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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> 123 Days PF And I Think I know Why
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Message started by Batch on Dec 10th, 2010 at 3:23am

Title: 123 Days PF And I Think I know Why
Post by Batch on Dec 10th, 2010 at 3:23am
I started an anti-inflammatory regimen of 3,000 mg to 4,000mg Omega 3 Fish Oil and 10,000 I.U. of vitamin D3 a day around the 4th of October and have been pain free ever since.

This could still be yet another, albeit a very pleasant, example of how the beast can change the game.  On the other hand, being the kind of guy that wonders why things like this happen, I've tested the water by skipping this daily regimen three times over the last three weeks, each time a week apart. 

Each time I skipped taking this anti-inflammatory regimen, I could feel the beast coming back within 24 hours of each skipped dose, usually at night shortly after an hour or so of sleep.  These attacks were very mild at Kip-1 to Kip-2 and cleared all by themselves in less than a minute after I got up and started breathing a little faster.  I also took the daily dose.

My rationale for starting this anti-inflammatory regimen came about when I noticed the earlier buffering regimen of calcium citrate tablets with vitamin D3, magnesium and zinc I took to elevate a low arterial pH, appeared to work much more effectively when I took the Omega 3 Fish Oil and got more direct sun. 

After some research, it appears the body can generate 10,000I.U. of vitamin D3 with as little as 10 minutes of direct sun on exposed skin.  See the following two links for more info on anti-inflammatory diets and supplements:

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My two previous two-week remissions occurred while I was spending a couple hours a day working in the yard or out on a boat with lots of direct sunlight...  both times wearing a tank top and shorts most of the day.

At that point I was convinced the calcium citrate tablets with vitamin D3, magnesium and zinc washed down with lemonade (high in citric acid) or margaritas (also high in citric acid), with or without the agave, was working as a buffer to elevate my arterial pH to lower the frequency and intensity of my cluster headaches.

Today, I'm convinced more than ever it's the vitamin D3 and Omega 3 Fish Oil that was, and still is, making the most difference by reducing the neurogenic inflammation associated with the pathophysiology of the cluster headache.

Again, this is still very anecdotal, and for sure, we're all wired differently, so individual reactions to this regimen may vary.  Having said that, ask your PCP or neurologist about giving this regimen a try.  So far for me, it appears to be an effective and inexpensive preventative. 

I hope this helps or at least provides food for thought.

Take care,

V/R, Batch

Title: Re: 70 Days PF And I Think I know Why
Post by wimsey1 on Dec 10th, 2010 at 7:12am
Sounds promising, Pete. Thanks, and keep us posted! Blessings. lance

Title: Re: 70 Days PF And I Think I know Why
Post by -johnny- on Dec 10th, 2010 at 12:10pm
question for the board.

is there anyway we can make  posts like this easier to find or make them more permanent? this is a brilliant post but if i were to refer to it in lets say a year from now it will be buried and hard to find.  just a thought

Title: Re: 70 Days PF And I Think I know Why
Post by Mike NZ on Dec 10th, 2010 at 12:56pm
Interesting results Batch.

Have you tried using just one of the two (vitamin D3 and Omega 3 Fish Oil) to see if both are needed or just one of them is?


-johnny- wrote on Dec 10th, 2010 at 12:10pm:
is there anyway we can make  posts like this easier to find or make them more permanent? this is a brilliant post but if i were to refer to it in lets say a year from now it will be buried and hard to find.


The moderators have mentioned a hall of fame posts forums or something similar that they are considering. If this happens then this post (like so many of Batch's) would be good candidates for it.

Title: Re: 70 Days PF And I Think I know Why
Post by mikstudie on Dec 10th, 2010 at 3:53pm
Great thread,Thanks...

Title: Re: 70 Days PF And I Think I know Why
Post by Ginger S. on Dec 10th, 2010 at 8:44pm

Mike NZ wrote on Dec 10th, 2010 at 12:56pm:
Interesting results Batch.

Have you tried using just one of the two (vitamin D3 and Omega 3 Fish Oil) to see if both are needed or just one of them is?


-johnny- wrote on Dec 10th, 2010 at 12:10pm:
is there anyway we can make  posts like this easier to find or make them more permanent? this is a brilliant post but if i were to refer to it in lets say a year from now it will be buried and hard to find.


The moderators have mentioned a hall of fame posts forums or something similar that they are considering. If this happens then this post (like so many of Batch's) would be good candidates for it.

Mike I tried Pete's Vitamin D3 2000IU and Omega 3 Fish oil regiment at his suggestion. 
I started out with a lower dose of the Vitamin D3 since I am smaller in stature than Pete is.  I started with 2 of the V-D3 and 3 Omega Fish oils per day.  This turned out to be too much  V-D3 for me so I lowered it to 1 V-D3 per day and kept the fish oil @ 3/day.  Still turned out to have too much of the V-D3 at  even one per day (no wonder I don't do well with too much sun don't need as much of the vitamin since I apparently get enough in my diet) on the chance that it was also too much Omega Fish oil I dropped it to two / day.  Not sure if it's just the end of my High cycle time (chronic so I always  have the CH almost daily) or if it's the Vitamin supplement Omega 3 Fish oil but I have notice a down tick in the number of hits I've gotten over the last week.

Thank You Pete for the suggestion on the vitamins it may have helped me, just in time too, was about to run out of this months rx's for both the nasal and my injectors of Imitrex. The Stash I'd built up after the huge refill I posted about a month or so ago is history!  Who knows if I hadn't started this regime right after we met I may be in a whole-nother world of hurt right now.  I may whined up adding 1 V-D3 per week, will have to see what the next week or two brings with the number of hits I get.

Title: Re: 70 Days PF And I Think I know Why
Post by Drew_Va on Dec 11th, 2010 at 7:46am
I'm in a cycle now (peaking it seems) and I  already  take 3000mg of Omega 3 daily (for years).  I upped the dosage yesterday to 4000mg and will add the D3 starting today. Will let y'all know how this turns out.

Title: Re: 70 Days PF And I Think I know Why
Post by starlight on Dec 11th, 2010 at 3:28pm
Batch,

I am so happy you are still painfree!  I am still taking 2 omega fish oil capsules and 5,000 iu vit D--am doing well but with using other meds too.   It was so helpful to me when I was down and out that you took the time to try to help me.  So glad for you that you are having continued success with your regimen.

Title: Re: 70 Days PF And I Think I know Why
Post by Batch on Dec 12th, 2010 at 5:21am
Mike,

Great question.  Between the Omega 3 Fish Oil and vitamin D3, it appears the vitamin D3 is likely the key factor.  I've run on 3,000mg to 4,000mg of Omega 3 Fish Oil a day in the past for five months without any vitamin D3.  I took it to combat a high total cholesterol side effect from taking rapamune (sirolimus) I was taking as a participant in a clinical study at NIH for an unrelated eye condition. 

Although Omega 3 Fish Oil helped clearly lower the frequency and intensity of my cluster headaches during that period, the results were not as dramatic as when I added the vitamin D3.  It did bring my total cholesterol down from 250 to 180 in less than two weeks and kept it there until I finished taking the sirolimus.

I've not tried to run on just the 10,000I.U. of vitamin D3 as yet.  I'll give it a try in January if things don't change and let you know either way.

Drew, thanks for giving this regimen a try.  That's the only way we can start getting past the anecdotal nature of my results from this regimen. 

I started taking the vitamin D3 in the morning before breakfast and it didn't become fully effective until the evening of the second day of 10,000I.U. a day.  I was averaging four attacks a night when I started this regimen.  The first night I had only two attacks and none the second night.

For 10 years while I was episodic, my cycles always ended in June so this change in cluster headache pattern is clearly not on the same schedule... but then the beast is good at changing the game... 

The only side effect I noticed so far from this regimen over the last two months is I've dropped 10 lbs.  Of course the extra physical activity of preparing our house for sale in Northern VA, packing out, and moving into the house I built in 1983 near Bremerton, WA could easily explain the weight loss.

Sarah, thanks for the kind words.  Glad to hear you're doing better.  I take it your oxygen therapy is working better with the new method.

I'm still humming right along at this point and watching Navy beat Army 31 to 17 made the day very special.

Take care,

V/R, Batch

Title: Re: 70 Days PF And I Think I know Why
Post by Lauren17 on Dec 15th, 2010 at 8:39am
I swear I could make a book from all of the posts of Batch's that I have printed out and put in our kit for next cycle! will be giving this a try for the next one of Lucas's cycle- we'll post the results.

Thank you. I wish there was a way to convey the sentiment behind that as stronger than the "thank you" we say when someone gets you a cup of coffee, for example. Were it a handshake, this thank you would be the 2 handed, knuckle crushing, edging on overly long kind! So thank you, Batch, I'm positive I'll have an opprotunity to say it again in the future.

Title: Re: 70 Days PF And I Think I know Why
Post by Batch on Dec 15th, 2010 at 1:12pm
Lauren,

Thank you for the kind words.  I'm happy you've found some of my post interesting enough to print. 

As far as the topic of this thread goes and the use of the anti-inflammatory regimen as a preventative...  the jury is still out...

I may have overlooked an obvious reason for the cessation of my cluster headaches...  I've been geezing so long I may have outlived the beast. 

The survey many of us took in 2008 indicates only 5% of cluster headache sufferers are 61 or older.  I wish we had worded the age question with additional age group categories or asked for date of birth.

Thanks again for the kind words and take care,

V/R, Batch

Title: Re: 70 Days PF And I Think I know Why
Post by thebbz on Dec 15th, 2010 at 1:35pm

Quote:
both times wearing a tank top and shorts most of the day.
[smiley=spit.gif] [smiley=spit.gif]
NO PLEASE NO!!! NOT the tank top and shorts again....OH the PAIN, make him stop.
Right on thread there Batch...couldn't help myself.
bb

Title: Re: 70 Days PF And I Think I know Why
Post by Barry_T_Coles on Dec 20th, 2010 at 9:19pm
BINGO Batch

I don't know why people say I'm slow! ;)

I have read through this thread a hundred times & only just twigged to the similarity to what I have been doing for the last couple of years; as long timers here may recall I started on a magnesium/calcium regime in April 2006 & had varying results with remission from high cycles (I'm chronic) until around July 2008 it was about that time that the Magnesium/Calcium supplements I was taking changed when the manufacturer added Vitamin D3 to the mix, I have now been 880 days in low cycle with only shadows & the occasional ice pick jab.

I haven't tried the fish oil supps as such but I do eat fish at least 3 times a week & enjoy my sardine & onion sandwich as much as 3 times a week as well.

Another anecdotal is that I live in a area where sunlight is pretty much constant all year round & work a job that is 60% office based 40% field work with weekends spent outside except for sleeping.

I wont say that this is the be all & end all of the C word but it has given me a pretty good life away from the constant bashings I was getting before & there are to many similarities to what Batch is achieving to ignore the possibility.

One other thing that i reintroduced into my diet was common table salt; I had gone away from salt after my daughter hounded me for years that it was going to harden the blood pump factory, I don't overdo the intake it's just enough to taste & I believe is helpful in the transmission of neurons.

If I wake up tomorrow with the brain in gear & think of anything else I'll let y'all know.

The tablets I am taking just an off the shelf from the supermarket or chemist and each contain,

" Calcium amino acid chelate 500mg
Calcium carbonate 375 mg
Magnesium amino acid chelate 125mg
Magnesium oxide-heavy 42.96mg
Vitamin D3 200IU"

Cheers
Barry

Title: Re: 70 Days PF And I Think I know Why
Post by wimsey1 on Dec 21st, 2010 at 1:52pm
Any thoughts on whether fish oil or D3 would/could be beneficial for migraines? For my wife. And just for grins, I will say I have had good luck with high units of B6. When I stopped taking the melatonin/B6 combo, they came right back. Anyone else using B6? Color me curious. lance

Title: Re: 70 Days PF And I Think I know Why
Post by eilif on Dec 29th, 2010 at 3:43am
Hi

Nice to see others CH have success with vitamin-D3. I have been pain free for 3 years after taking vitamin-D. But vitamin-D has some co-factors which are important to take together with the vitamin. The formula is:

5000-10.000 IU Vitamin-D3:Vitamin D is the "miracle nutrient" that activates your immune system

500 mg Magnesium Chloride Oil: The best way to get magnesium is via the skin. The absorption is 70% and only 10-20% when taking oral magnesium supplement. Act the same way as Verapamil. Is the natures own Calcium Channel Blocker with no side effects.
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45 µg Vitamin K2:
Vitamin K2 cleans calcium deposits from your arteries and deposits it in your bones.

3-9 mg Boron: To increase level of free testosterone.
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Zink

Vitamin D cofactors: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Title: Re: 70 Days PF And I Think I know Why
Post by George on Dec 29th, 2010 at 10:04am
Hiya again, Niels. 

Best,

George

Title: Re: 70 Days PF And I Think I know Why
Post by vietvet2tours on Dec 29th, 2010 at 1:54pm
Little feller is persistent.

        Potter

Title: Re: 70 Days PF And I Think I know Why
Post by Callico on Dec 29th, 2010 at 3:11pm
He may have gotten a little bit of corroboration.

Jerry

Title: Re: 70 Days PF And I Think I know Why
Post by eilif on Dec 29th, 2010 at 6:10pm
I think you guys have eaten too much mushrooms lately. Try some vitamin-D3 instead.

Best Eilif

Title: Re: 70 Days PF And I Think I know Why
Post by Brew on Dec 29th, 2010 at 6:16pm
What is that definition of insanity again? Trying the same thing over and over and always expecting a different result - yeah, that's it.

Title: Re: 70 Days PF And I Think I know Why
Post by Mike NZ on Dec 29th, 2010 at 7:00pm

Brew wrote on Dec 29th, 2010 at 6:16pm:
Trying the same thing over and over and always expecting a different result - yeah, that's it.


That is why quantum mechanics (physics) is so confusing as you'll probably get a different answer every time!

Title: Re: 70 Days PF And I Think I know Why
Post by Linda_Howell on Dec 30th, 2010 at 12:19am

Quote:
I think you guys have eaten too much mushrooms lately. Try some vitamin-D3 instead.


Time to give it a rest Neils.  ::)

Title: Re: 70 Days PF And I Think I know Why
Post by Batch on Dec 30th, 2010 at 3:23am
Hope all of you had a Very Merry Christmas...  and here's to a wonderful and Happy New Year!

Lance, even though I'm still PF after 86 days...  the jury is still out on the efficacy of the anti-inflammatory regimen of vitamin D3 and Omega 3 Fish Oil as a preventative for cluster headaches. 

Having said that, there are so many similarities between the pathophysiology of CH and Migraine that it may help migraine sufferers as well.  It's at least worth a try.  I've got Joyce taking the vitamin D3.  She's been on it since the end of November and so far has skipped her usual monthly migraine...

All you need to do is compare the side effects to see this regimen is much safer than taking verapamil as a preventative and sumatriptan succinate as an abortive.

Take care and Happy New Year.

V/R, Batch

Title: Re: 70 Days PF And I Think I know Why
Post by Batch on Dec 30th, 2010 at 5:10am
Barry,

Thanks for the update on your experience with calcium, magnesium and vitamin D3.  This is starting to get interesting.  There may be something about taking this regimen of minerals and vitamin D3 after all...  I was beginning to think I'd out geezed the beast.

On a more serious note, I'm still PF and still on the regimen of Omega 3 Fish Oil and vitamin D3.  Like you, I also eat fish a couple times a week.

In looking over what I've been doing differently that may be playing a role in the cessation of my cluster headaches, the two things that stand out are the vitamin D3 and a lot more physical activity. 

My tired old bones tell me every night about all the work I've been doing.   The other indication of increased physical activity is I haven't changed my eating habits yet I've still lost 20 lbs and 4 inches off my waist in the last two and a half months...

Take care and thanks for your insights.

V/R, Batch

Title: Re: 70 Days PF And I Think I know Why
Post by Erics.Parents on Dec 31st, 2010 at 8:37am
I have Omega 3  - Salmon Oil is that the same. 

Also, on another thread someone said that Vit. D3 boost Testosterone levels.

Title: Re: 70 Days PF And I Think I know Why
Post by Batch on Jan 2nd, 2011 at 8:49am
Denise,

Salmon Oil is high in Omega 3 and there appears to be more than anecdotal evidence that increased intake of vitamin D3 increases testosterone levels.

I hope Eric doing better.  Have any of these regimens had any effect on the frequency and intensity of his cluster headaches?

Take care,

V/R, Batch

Title: Re: 70 Days PF And I Think I know Why
Post by Yan on Jan 13th, 2011 at 1:58pm
Hi Batch......great read.

I stated to take Vitamin D3 and Omega 3 yesterday.... but got a first real attack during the night :(

A few questions:

-First, are you still PF?

-Do you take the 10 000 units of Vitamin D3 at once in the morning?

-The Omega 3 capsules I take have these ingredients:

Fish oil concentrate (anchovy, sardine, mackerel) - 1065 mg
Omega-3 fatty acids - 630 mg
Eicosapentaenoic acid (EPA) - 400 mg
Docosahexaenoic acid (DHA) - 200 mg

Now, I have no clue what is what here.....is it the total of all 4 ingredients that are all Omega 3s?

Thanks for the help, and hope you are still PF :)

Title: Re: 70 Days PF And I Think I know Why
Post by akage on Jan 13th, 2011 at 5:28pm
I've increased my dosage of D3 to 9000 IU (from my usual 5000 IU) for the last 2 weeks or so, unfortunately no effect on me, still getting hits.

Title: Re: 70 Days PF And I Think I know Why
Post by Batch on Jan 15th, 2011 at 2:56am
95 days and it swerkin...  We're all wired differently so it's not surprising this anti-inflammatory regimen may not work as well or at all with others... 

Then again, it may not be working at all and I've just outgeezed the beast.  I'm still taking the 3,000mg. (three 1,000mg. softgels) Omega 3 Fish Oil and the 10,000I.U. vitamin D3 (two 5,000I.U. softgels) every morning just in case it is working. 

I feel great.  I've dropped 30 lbs, 4 inches off my waist and I'm wearing Levi's that suffered severe shrinkage 20 years ago.  Of course the weight loss could be due to getting off my but and doing a little work laying up some fire wood before the heavy snow hits.

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In any case, I'm not complaining.

Take care,

V/R, Batch

Title: Re: 95 Days PF And I Think I know Why
Post by TarHeel-blues on Feb 5th, 2011 at 6:56pm
batch would you say this needs to be taken alone or can it be coupled with prescription preventatives such as lithium verapamil etc?

Title: Re: 95 Days PF And I Think I know Why
Post by Batch on Feb 6th, 2011 at 10:46am
THB,

As the skin can generate between 10,000I.U to 20,000I.U vitamin D3 in as little as 30 minutes exposure to direct sunlight and the fact that there are amazingly few contraindications for vitamin D3, I feel quite comfortable taking both the vitamin D3 and Omega 3 fish oil along with other medications.

BTW, I've been pain free for over 120 days since starting this regimen and at 67, I'm feeling and acting like a kid again.  I'm out in the woods nearly every day with my chainsaw and must have cut, split and stacked at least a couple cords of fire wood in the last two months.  I'm also still shedding weight.  Go figure...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Brew on Feb 6th, 2011 at 11:16am

Quote:
...I'm feeling and acting like a kid again.

Which makes Joyce a happy girl.  ;)

Say hello to her for us.

Title: Re: 123 Days PF And I Think I know Why
Post by TarHeel-blues on Feb 6th, 2011 at 1:24pm
and some really nice looking firewood it is,,im jealous

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Feb 6th, 2011 at 6:52pm
I've had Joyce on the same Omega 3 Fish Oil and vitamin D3 regimen since Christmas when she commented I was packing more wood... ::)  We also added the calcium citrate combo supplements about that time per several studies I've read.

Joyce has shed some weight as well and hasn't had a migraine in two months...  Now we're both running around like a couple kids... :D so the positive side effects of this regimen continue to multiply.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Feb 7th, 2011 at 2:58am
That's good news Batch.
I'm now 928 days or 2years 6 months.
This B3 sardine sanga's along with the magnesium/calcium may just yet prove worth while.

Cheers
Barry

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Feb 7th, 2011 at 3:37am
G'day Barry,

Thanks for the great comments.  The results of this regimen are clearly anecdotal at this point and will likely remain that way for a while until more folks try it with similar results...  Having said that, I think we're onto something good here.

Take care and Cheers,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Feb 7th, 2011 at 9:45am
I took Batch's suggestion and started the same supplement regimen.  To that my M.D. suggested adding 1,000mg Taurine 3x per day, 3,000mg Glycine at bedtime daily, and daily doses of Resveratrol, and Selenium.  I found an interesting article on Glycine and its relationship with GABA (the major inhibitory neurotransmitter of the brain) here:
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Anyway, long story short: anecdotally, my clusters started to become less numerous and less intense about three days after starting these supplements. No way to say with certainty that it wasn't some other lull or nearing the end of the cycle.  But I'm all for using the shotgun approach to get out of pain. 
Speaking of which, two days after the lessening of the ch's I got a script from my Doc for Prednisone and I've been totally PF for over two days now. 

I wish the pain weren't so agonizing for all of us so we could leisurely try one treatment at a time and thereby figure out what individual or combination of therapies, meds, etc...actually worked.

Thanks for your input Batch.  BTW from what source(s) did you come across that supplement info?

P.S. I'd like to know anyone's experience with Choline supplementation.
Thanks!
-Glassman

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Feb 7th, 2011 at 1:07pm
Hey Glassman,

Great input on this regimen and I'm glad to hear the prednisone taper is working for you.  It's typically 90% effective for most of us, but all bets are off when the taper ends unless there's another preventative in play at that point.  If there's no other intervention at the end of the taper, the beast has a propensity to come back with a vengeance.

As with most of my findings in the treatment of our disorder, I arrived at my conclusion on the effectiveness of the anti-inflammatory regimen of Omega 3 Fish Oil and vitamin D3 largely through first hand experience followed by searching through results from a lot of clinical studies to confirm my findings with sound medical evidence.

I had originally attributed several week long CH remissions to a buffering regimen of calcium citrate tablets that also contained vitamin D3, magnesium and zinc washed down with homemade lemonade... 

However, upon review of my logs I found there were two more factors that came into play during three of these remissions. The first was increasing the dose of the calcium citrate tablets up from three to four/day.  The other was two of the week-long CH remissions occurred while I wasn't taking the calcium citrate tablets but I was taking the Omega 3 Fish Oil while spending a good bit of time outside in direct sunlight wearing shorts and tank top working in the yard.

I connected the dots last October while I was here in Bremerton, Washington working on the house.  I realized that the CH remissions I'd attributed to the calcium citrate and citric acid buffer were more than likely due to the increased level of vitamin D3 from sunlight so I stopped by Costco and picked up a bottle of 2,000I.U. softgel capsules and started dosing at 10,000I.U. a day along with three of the 1000mg Omega 3 Fish Oil softgel capsules.

At that point I was in a high cycle with four CH a night at pain level 7 on the 10-Point headache pain scale and was aborting them in 6 to 7 minutes with oxygen therapy at flow rates that support hyperventilation. 

The first night after starting on the vitamin D3 the CH dropped to two.  The second night was PF and it's been that way ever since.  I've been chronic since 2004 and two weeks was the longest I'd spent in remission/very low cycle.

I based my 10,000I.U. dosage based on several articles on blood serum concentrations of 25(OH)D, which is the circulating Vitamin D metabolite that serves as the most frequently measured indicator of Vitamin D status.

Most of the recent research articles I've read support a much higher normal range than the present 50 to 80 nmol/L and an even higher range for a therapeutic level.  Part of their rationale is based on the fact that 30 minutes of direct sunlight results in serum concentrations of 25(OH)D in the 212 to 220 range.  That is the same range they see when dosing with 10,000I.U. vitamin D3/day.

There are 317 hits on vitamin D3 studies on ClinicalTrials.gov so there's a lot of interest on this topic.

Hope this helps.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by TarHeel-blues on Feb 7th, 2011 at 2:32pm
i know its way to early yet but on my 2nd night of this regimen i slept all night with no hits,cant even remember the last time i did that.

honestly it was just like your experience batch,they were cut in half the first night and gone the 2nd,,keeping my fingers crossed for tonight,
THANKS  so much for what you do here Batch,magic bullet or not at least your giving us some ammo,

why the heck after 10 yrs with the same neuro have none of this kinda stuff been suggested by him?

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Feb 7th, 2011 at 6:44pm

TarHeel-blues wrote on Feb 7th, 2011 at 2:32pm:
why the heck after 10 yrs with the same neuro have none of this kinda stuff been suggested by him?


Probably because he doesn't suffer like us.

I remember when I first started out on my run with magnesium a statement made by Helen (LeLimey) “If a cure is ever to be found for our condition it would come from this site” How prophetic that now seems to be.
Not that this is a cure but we hurt a lot less & I don't think it's just coincidental that 2 people thousands of km apart could be getting similar results.

As I said in an earlier post “around July 2008 was about that time that the Magnesium/Calcium supplements I was taking changed when the manufacturer added Vitamin D3 to the mix” That was when this current period of no CH hits started, prior to that the best PF time I had managed since going chronic in October 2004 was 297 days.

I have taken a slightly different route to batch but it seems we have arrived at the same destination with the common factor being D3.
As Batch has said about the sunlight being a major contributor I live in a sub tropical area & spend 50% of my working time out in the sun, so I get a lot of free D3.

I’m now going to add the Omega 3 fish oil supplements to my regime & see if they reduce my almost constant shadowing.

I’ll never ever know if I never ever go. ;)

Cheers
Barry

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Feb 7th, 2011 at 8:01pm
Batch's regimen got me thru a shi$$y high cycle this last go round...when even 02 was failing me. No question in my mind there is something to it. On or off cycle I take a daily Fish oil, magnesium, zinc, calcium citrate with D, and a regular daily vitamin.

Glad it's getting yout thru the night...that's a beautiful thing! :)

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by MITYRARE on Feb 7th, 2011 at 8:23pm
I have been tuned into this thread for some time and I am so happy you are getting relief Batch.

I am confident that in the not to distant future a preventive protocol that will help most CH patients will come as a result of the experiences on this forum.

Hormones, vitamins and supplements, psychedilcs...there is a key to treatment buried here somewhere...hopefully the scientists will try and keep up with the findings and experiences of people here and create an effective treatment for all.


paul

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Feb 8th, 2011 at 10:37am
I've noticed that when I'm in cycle, which is usually during the winter months, I have a strong craving to just stare at the blue sky on a bright sunny day (which we don't get all that often during the Central Ohio winters). At times I've sat in my car in a parking lot for up to two hours just looking at the sky (note: not directly at the sun!). On overcast days I sit in my plant room under the 400 watt grow light.  Though I'm not sure if there's an effect on the CH's, there's a definite and deep calming relief I feel during these "photosynthetic" moments.

The one time I got CH during the summer months was when I was working in a dark room most of the day (I'm also a massage therapist) and not seeing daylight but a couple of hours a day (thanks to my wife Kathy for making that connection).


Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Feb 8th, 2011 at 11:57am
Out of curiosity, I did some research on effects of light stimulation and the optic pathways leading to the hypothalamus and related areas. Which lead me to the following.

Apparently, not much is known, nor have many studies been done, about vitamin D receptors in the human brain.

Here's an abstract of a study from the Journal of Chemical Neuroanatomy which describes the location of vitamin D receptors in the human brain and the enzyme which is responsible for formation of the active form of the vitamin :
"The strongest immunohistochemical staining for both the receptor and enzyme was in the hypothalamus and in the large (presumably dopaminergic) neurons within the substantia nigra."

Interesting, since more research is pointing to defects in the hypothalamus as the source of CH's, and peoples claims of help from vitamin D.

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Feb 8th, 2011 at 11:59am
Sorry, I meant to also post the link to the above journal article:
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Title: Re: 123 Days PF And I Think I know Why
Post by thebbz on Feb 8th, 2011 at 6:44pm

Quote:
I teach Anatomy & Physiology and am always interested in discovering new information.

Wished I knew what you know, and you had a feather in your hat. ;)
signed
Jealous :)

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Feb 9th, 2011 at 8:24pm
Hey THB,

Outstanding news!  You've done what I hope more CH'ers will do by giving this regimen a try and your early results are icing on the cake.  At less than 10 cents a day for the two doses, lots of other proven health benefits and no real downside, this regimen is almost a no-brainer.

Although I've got my fingers crossed that your remission continues, I'm a realist, so I'm also long way from hoisting the victory banner.  We need to collect a lot more user evidence from CH'ers like you to prove this regimen is an effective preventative for CH before we can attract the interest and funding required to do the kind of clinical trials that will make treatments like this ready for prime time.

As an example, It's taken over $200 thousand dollars and four years from the time we collected enough user data on the demand valve method of oxygen therapy that proved it was better than 90% effective and three times faster than oxygen therapy at a flow rate of 15 liters/minute in aborting a CH, to get Dr. Rozen's study of this method started.

Unfortunately even very favorable results from this study won't give the demand valve method of oxygen therapy prime time status as an accepted acute treatment and abortive for cluster headache. 

It's going to take a gold standard clinical study with a randomized, double-blind, crossover, placebo controlled protocol and statistically significant results to convince clinicians, neurologists, payers, and government bureaucrats the demand valve method of oxygen therapy is not only safe and significantly more effective than oxygen therapy at ≤15 liters/minute, but that it's abort times rival that of imitrex injections at a fraction of the cost and without any side effects.

Bob Wold and the good folks at Clusterbusters have been doing the same thing for BOL.  They put up a big chunk of coin to make Dr. John Halpern's proof of concept/Phase I study of 2-bromo-LSD as a long term CH preventative possible.  That study completed with eye opening results.  Now they're working to get the Phase II study underway.

Long story made short, we've got a long way to go even with good participation before we can prove the Omega 3 Fish Oil and vitamin D3 regimen is an effective CH preventative beyond just anecdotal testimony.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by TarHeel-blues on Feb 9th, 2011 at 9:09pm
well i went from 10-12 hits a day all in the k-7 to k-9 range most of them coming at night robbing me of any real sleep to 1 k-3ish hit in the last 3 days,,
ive gotten more sleep in the last 3 nights than ive gotten the last 3 months combined,,AND IT FEELS GREAT!!!

early or not that kind of relief has mr batch high on my hero list for sure!!

if you come up wih any more regimens ill gladly be your guinea pig

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Feb 10th, 2011 at 3:21am
That's the type of news that I love to hear, may it continue.
I have altered my regime to include D3 & dropped one of the Magnesium/Calcium/D3 tabs & included omega 3 so we shall see what happens.

Cheers
Barry

Title: Re: 123 Days PF And I Think I know Why
Post by karma on Feb 15th, 2011 at 5:47pm
Jury's out but good results so far.
As a little background: Episodic and have been using RC seeds, O2, and caffiene. Since starting the seeds years ago the cyle is slow to develope and easily shut down for the most part. I was dosing every 3 days before staring and was able to extend to five days.
I added D3 and fish oil as described by Batch a week ago and stopped getting night hits right away. Energy boost is significant to the point of being almost to much at times.
I wouldn't soley depend on D3`and fish oil but it definetly seems to be helping the seed regime and sleeping is something to look forward to.

Title: Re: 123 Days PF And I Think I know Why
Post by MarkHW on Feb 21st, 2011 at 3:18pm
Hi All, my name is Mark.  I was on the CH boards years ago, but haven't posted in a long time.  My cluster has been doing much better since I moved from Ohio to Austin, Texas.  I even went a little over a year without an attack!

But.. I went to Ohio over the Christmas holidays and by the end of the trip I was in cycle.  Used prednazone to stop it for awhile, but the cycle returned after 2 boughts of steroids.

I was running out of patience and imitrex, so I checked out the site and saw the post on D3 & Fish Oil.  so, I decided to give it a try.  I started on 15000 IU D3 and 3 fish oil tablets (not sure dosage).  The clusters stopped, but I was so nauseous I couldn't get out of bed. 

I cut down to 10,000 IU D3 and 2 fish oil tablets and was better, but still very nauseous.  I then cut to 5,000 IU D3 and 1 fish oil tablet.  I was still nauseous and headaches returned.

After doing some research I cut the fish oil out and went back to 10,000 IU D3.  I'm now headache free again.  I'm considering going up to 15,000 IU of D3 again if need be because the nausea is pretty much gone.

I have both cluster and migraine and the D3 seems to be stopping both!

Thanks for this tip!!  I'll keep you updated on my progress!
Thanks again, Mark

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Feb 21st, 2011 at 3:50pm
Mark,
Funny, I'm from Ohio and went to Austin in January for a quick get away and came back with CH's!  (probably didn't help that I was there during one of the coldest spells in years!)
Anyway, I seem to be in remission now.  I too noticed upset stomach from doing more than 2,800 IU fish oil daily.  So I've cut back on the fish oil but but am still doing 12,000 IU vitamin D and that seems to be OK for my stomach.

Title: Re: 123 Days PF And I Think I know Why
Post by lori_p on Feb 25th, 2011 at 12:38am
Hi Batch & everyone,

I'd love to try this regimen & just wanted to know when you take your supplements during the day?  Do you take them all at once, or throughout the day? 

Thanks so much!
Lori

Title: Re: 123 Days PF And I Think I know Why
Post by Jair Crawford on Feb 25th, 2011 at 7:17pm
Man, the results people seem to be having from this are amazing!

I myself do not have CH, but I do take D3 every day because it is great for the immune system. This is really encouraging! I'd like to hear more updates!  :D

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Feb 25th, 2011 at 8:43pm
Thanks Lori & Jair
I was just about to bump this thread upward as I think the results that some are getting from this method are to significant to just be forgotten.

I take my sups spread out over the day, Batch will undoubtedly be along soon to fill in what I cant.

Cheers
Barry

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Feb 26th, 2011 at 1:24am
Thanks all for giving this regimen a try and for chiming in with your results.  I don't think it matters much when you take the Omega 3 Fish Oil and vitamin D3 softgels although taking them with a meal is probably a good idea. 

I take mine all at once in the morning before breakfast with a glass of OJ or cold water followed by a cup of my home roasted coffee. 

I'm brewing a wonderful blend of fresh roasted Colombian Supremo Popayan and Ethiopian Yirgacheffe this week.  I buy the green coffee beans in bulk so the average cost is still slightly under $5/lb for these two cultivars... even with the recent hike in commodity prices.

My coffee roaster is an $18 PopLite air popper from Wally-Mart with a little rabbit mesh to keep the beans from going into orbit so this is a low cost treat that's had Joyce and I hooked for the last 8 years.

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Again, thanks for giving the anti-inflammatory regimen a try and letting us know of your results.

On a related note for the CH'ers who live in Pennsylvania, Southern NY, NJ, DE, Northern VA, Western MD, WV, or Eastern OH, Dr. Todd Rozen is conducting a pilot study of the demand valve method of oxygen inhalation therapy for cluster headache. 

The study opened earlier this month at the Geisinger Center for Clinical Studies (CCS) at their Wyoming Valley facilities located at 1000 East Mountain Blvd, Wilkes Barre, PA  18711, but the response has been slow.

I realize the drive to the Geisinger CCS may be an inconvenience or show stopper for many of you, but if you're interested, this study will compare the results of oxygen therapy at a flow rate of 15 liters/minute with the new method of aborting cluster headaches administered by oxygen demand valve at respiration rates that support hyperventilation. 

Other than the out of pocket travel expense for two trips for the induction exam and out-brief, the folks at Geisinger will provide everything you'll need at no cost and you walk away with an Rx for oxygen therapy to boot.

The link for this study is listed below:

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If you decide it's not worth your time to participate or you're no longer in cycle, if you know any other CH'ers that live within driving distance from the CCS you think might be interested, give them a call or email...  Any help will do us all a lot of good as we need studies like this to prove oxygen therapy can be highly effective with very short abort times if the flow rate is high enough.  It will also help draw attention to our disorder and that is always a good thing.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Feb 26th, 2011 at 9:10am
As someone who bought his own demand valve I gotta say these kind of trials are critical. If there's any way you can participate please consider doing so. For yourself and for every CH'er who has been told 6 LPM is a high enough flow rate to abort. >:( The demand valve is nothing short of awesome! These kind of studies could one day make it a main stream prescription.

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by dereksgirl on Feb 26th, 2011 at 11:46am
not sure if this relevant, but I found this study interesting in regards to low flow rates for oxygen and its effect on Serotonin levels...

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DG

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Feb 27th, 2011 at 12:41pm
Interesting study, DG. Thanks for sharing it!

Title: Re: 123 Days PF And I Think I know Why
Post by Jair Crawford on Feb 27th, 2011 at 11:19pm
So how are the D3 trials going for you all? I'm really curious about this, I'll be asking for updates, just to give you a heads up. Don't let me become too annoying. :P

Title: Re: 123 Days PF And I Think I know Why
Post by red ryder on Feb 28th, 2011 at 5:05pm
As posted on the tread I started, I think there is something to Batch's D3 and cal-mag-fish oil. I brought the D3 up to 10,000 for last 3-4 days and last night I slept throught the night 7+ hours without a headache. In my 17 years of cluster headaches when in cycle I have always been hit at night at least once unless I took DHE or the cycle was over. I am only 3 weeks in to this cycle and this is great. No hits at all durring the day. I don't know how much the verapamil is playing part of that.                       Jay                           

Title: Re: 123 Days PF And I Think I know Why
Post by Skyhawk5 on Mar 3rd, 2011 at 7:07pm
Bump..

Title: Re: 123 Days PF And I Think I know Why
Post by wimsey1 on Mar 4th, 2011 at 7:22am
Good morning, Batch and all.  So as I posted the neuro had me titrating off verapamil by 40mgs/day every two weeks. I got down to 320mgs and the Beast came back big time...every day, then twice a day and once at night, then 3 times a day...and the same ol' same ol' pattern was reintroducing itself.  So I began upping the dose and have been back to 400mgs/day. But the hits just kept coming. Then I remembered the post on D3, and since there was this jar of soft gels sitting on my window sill...two days I took 10K units and I didn't get a hit all day or night...and yesterday, again 10K units, and hit free again. So I'll do it again today. It beats the pred taper I was thinking about. And I pray it will tame this beast, too. Blessings. lance

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Mar 4th, 2011 at 7:53am
Lance, I'm thrilled to hear of such great news!  I believe (more like hope)  my cycle has ended but I'm still on the D3 etc... just because I feel way better on it.
Hope it continues to work for you!
-Gary

Title: Re: 123 Days PF And I Think I know Why
Post by red ryder on Mar 4th, 2011 at 8:51am
Just thought I would let everyone know I have gone 5 days now without a headache after starting Batches formula. I am only 3 1/2 weeks into this cycle and as I stated before this is just eye opening. Only one mild shadow thurs. morning. Have not had to touch the O2. I even tapered down the verap from 400 to 320. Only other thing I am taking is 9mg melatonin at night. I hope this continues, thanks Batch and everyone for their input!!!!   jay

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 4th, 2011 at 10:54am
Jay, Lance, Mark, All,

Thank you for keeping us up to speed on your progress with this anti-inflammatory regimen.  This is exactly what I had hoped for and needed to hear.

I've done some research on the magnitude of the placebo effect and there are too few studies that look at it in isolation.  Most look at the placebo effect in context of a comparison with a therapeutic agent.   It's going to take a gold standard clinical trial (Randomized, Crossover, Double Blind, Placebo Controlled) to quantify the placebo effect with any precision that we may be experiencing with this regimen.

Having said that, there's sufficient evidence that quantifies the outside limits and magnitude of a placebo effect between 30% and 70%

To my way of thinking, if we as a group are achieving better than 75% efficacy from this regimen with either a CH pain free response or a significant reduction in the frequency, intensity and duration of our CH, then we are actually experiencing a therapeutic effect from this regimen.

The other way of looking at these results is...  Machs nicht!  Who cares if it's a placebo effect or a therapeutic effect...  the pain is gone!

Please keep the reports coming...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Mar 4th, 2011 at 1:18pm
Batch, and everyone...
I believe, Batch, that in your own way, you have done a small n, ABA design (pioneered by B. F. Skinner) with your own trials of being on and then off and on again the supplements and noting the changes in pain levels with each change in the administration of the supplements.
From the first page of your post on this topic: "Each time I skipped taking this anti-inflammatory regimen, I could feel the beast coming back within 24 hours of each skipped dose...."
This, at least according to what I remember from psych, is enough to indicate a significant effect. Maybe not enough to satisfy the "gold standard" but certainly more than enough to continue exploration.
I wasn't bold enough to face the beast again to do this myself.  But if anyone out there trying this supplement regimen wants to go off and note any changes in pain level then go back on and do the same, please let us know your results.

Title: Re: 123 Days PF And I Think I know Why
Post by Lauren17 on Mar 8th, 2011 at 9:56am
Lucas has picked up this regime as well.

He's finding the right balance between 2,000mg-4,000mg omega 3 and 8,000IU to 10,000IU D3 right now- will post again when we finalize dosage. He is out of cycle now, and unfortunately (wait- totally totally fortunately, I just mean unfortunately in relation to this research) his cycles still bounce around a bit. Sometimes it's 6 months sometimes it is 2 years. So we won't know if this prevents a cycle for him BUT he has been getting off cycle zaps for a few seconds and the occasional shadow- we'll see what this does for those. These are new for him, and both of us feel this means he has another cycle right around the corner- but that is based on solely a gut feeling. So we'll see. I'll bust out the Cluster Headache journal again to record our findings on this.

Fingers crossed ad a Thank You and good luck to all of you!

Title: Re: 123 Days PF And I Think I know Why
Post by julieknfla on Mar 8th, 2011 at 5:58pm
Hi to all, back here after amost a 4 year remission period. I had been in cycle again for 6 days when I found this post, and decided to try the cal-mag-d and fish oil. Was having two hits a night, ramping up to a kip 8 or 9. Using O2 to abort, which always works for me, within 10 minutes or so. I've decided holding off running to the neuro for my usual  pred taper and verapamil. I have always taken a multivitamin, but I am on day 4 of an added 7,200 IU of D, 1200 calcium, 2,000 fish oil, 750 Magnesium. Threw in 50Mg of zinc for good measure. I know it may be to early to tell, but I actually had only ONE mild hit last night, kip 4, used the O2 and was gone within 3 minutes! My shadows have eased up too! I can't tell you how ecstatic I am, and hopeful this is a long lasting effect. I am not afraid to go to sleep tonight. I will keep you posted. Hoping we all can find an answer and be PF!

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 9th, 2011 at 10:11am
Hey Julie,

That's great news...  Near as I can tell, this regimen reaches maximum effectiveness after two days of use.  Please keep us posted.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by oxyrunner on Mar 9th, 2011 at 10:56am
Last febuary I didnt have my usual CH's and couldn't work out why - until now. I was eating smoked salmon and poached eggs on toast for breakfast most mornings after my run ( bought the salmon reduced and would freeze it ). So I have started using the D3 and omega fish oil and within 24 hrs I am only having low grade shadows that come and go instead of the annoying heavy shadow that lasts all day, lets see if my 12-15am demon arrives tonight.

Title: Re: 123 Days PF And I Think I know Why
Post by Powermonkey on Mar 9th, 2011 at 2:34pm
Hello everyone, I'm new to the forum but I've been lurking for a few months.

I decided to try to the D3 regimen after reading this thread.  I've been at it for 4 days so far, and went from being in near constant pain from shadows and taking serious attacks at around midnight to... almost NOTHING.  I get an occasional, very mild, brief shadow every now and then, but aside from that, I'm pain free.  Quality of life has improved dramatically.

I've been taking 10,000 IUs of D3 a day in the form of 1 5,000 IU tablet in the morning, and one in the evening.

I won't rule out the possibility that I'm nearing the end of a cycle, but I'm honestly not willing to quit taking the d3 tablets to find out.  If anything changes, I will post in this thread.

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Mar 9th, 2011 at 4:36pm
Welcome to the boards Monkey, great news on the Vitamin D front. This is getting a little hard to ignore, do keep posting on your progress.

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 9th, 2011 at 10:38pm
Oxyrunner, Powermonkey,

Thanks for the "How Gozit" updates on your experience with this regimen.

I grew up here in the Pacific Northwest in the Puget Sound area so smoked salmon is always a regular.  I used to smoke my own and may start doing that again.

I like my smoked salmon on a toasted English Muffin with a big dollop of Dill Sauce topped with a slice of tomato and a slab of Tillamook sharp cheddar cheese.  I stick the whole contraption under a broiler to warm the smoked salmon and melt the Tillamook.  Wash that down with a cold  Pilsner Urquell or Alaskan Amber and you've got a meal fit for a king.

As far as the Vitamin D3 dosing goes, take a look at the attached paper by Dr Peter J Lewis, MD on vitamin D(3) Deficiency I found a few weeks ago.  It's an eye-opener.

Take care and please keep the updates coming.

V/R, Batch

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Vitamin_D_deficiency.pdf (41 KB | 128 )

Title: Re: 123 Days PF And I Think I know Why
Post by dereksgirl on Mar 10th, 2011 at 12:38am
Hurting hair’ during childhood (pain in the scalp when hair is brushed or combed)
shivers down my spine...
My 5th child (4yrs old) complains about this alot. I knew in the back of my mind it wasn't right, but couldn't imagine how "silly" I would sound as a mom if I mentioned it to a doctor! ALWAYS TRUST YOUR GUT  :) (He is also tired alot-I give him a liquid vitamin, but it hasn't helped as much as I would like.)

His poor little body isn't gettin what it needs...
Thanks for sharing that link.


Title: Re: 123 Days PF And I Think I know Why
Post by oxyrunner on Mar 11th, 2011 at 3:21am
Well just to update you all - 12-15am never happened, slept right through  :D . Only the odd little shadow. It could be that I was coming to the end of the cycle but I usually have shorter lived CH's getting all the time less intense and shorter lived until the final one lasts only 15 minutes, then they stop. This time they have stopped dead  ;D ;D. I'm gonna keep this regime up, oh and I may just have some smoked salmon and egg for breakfast.
Happy days

Title: Re: 123 Days PF And I Think I know Why
Post by julieknfla on Mar 11th, 2011 at 7:08am
This is my 7th day taking the cal-mag-D3. I did up my dose of the D up to 8,200 IU the 5th day, along with 10 mg and 1 benadryl at bedtime, as I was having shadows during the day, and light kip 4 attacks at night. Last night was my first PF night! (for this cycle which was in it's 12th day) I am convinced this works! Back in Nov of last year my GP had told me I was low on D. My bloodwork says vitamin D 25-OH Total 35 ng/ml. She advised me to start 2,000 IU extra D a day, but I bought the bottle and foolishly never started them. I live in Fla, but I also work in a dimly light rooms performing ultrasounds all day. Isn't it amazing that CH just may be caused by vit D defficiency, after all the years we may have suffered and it was so easily prevented? Please, everyone keep us updated on your progress on this regime, and to everyone who has posted their progress, thank you sooooo much!

Title: Re: 123 Days PF And I Think I know Why
Post by julieknfla on Mar 11th, 2011 at 8:30am
Also, keep in mind that even if you do get an a adequate amount of sunlight, as we grow older, our bodies are not able to process the sun into vitamin D as easily, according to my doc. I am anxious to have my levels tested again after being on the extra D3. I think a little caution is advised that we don't get to MUCH D, although I think it takes more than 3 months at high intake to cause problems. I intend to gradually reduce my dose.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 11th, 2011 at 11:41am
Julie,

Thanks again for two excellent posts.  Having a medical professional like you posting on this thread is adding the kind of feedback we need to hear. 

If you go through the attachment I added to this thread in post #73 you'll see both the therapeutic and maintenance dosage for vitamin D3 as well as the new target 25(OH)D3 levels suggested by Dr. Lewis.

He lists the following levels for 25(OH)D as a practical guide to diagnosis and management. The following 25(OH)D levels are in nmol/L:

  • <100 = Deficient
  • 100-200 = Optimal
  • 135-225 = Normal in sunny countries
  • 500+ = Potentially toxic (this would require a sustained daily intake >/= 40,000 IU)

[Note: To convert from nmol/L to ng/ml, divide by 2.5]

Take care and thanks again for the great post,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by ICY on Mar 11th, 2011 at 2:12pm
Well I have finally got my finger out and been to the health shop only D3 could find though was 10ug so will be starting on a low dose, ordered some 5000iu but gotta wait for them to be sent to me.

Will post results over next few days, heres hoping :)

thanks Pete :)

Title: Re: 123 Days PF And I Think I know Why
Post by River_Rat on Mar 11th, 2011 at 5:41pm
Hello everyone, it's been a long time since I've been on, almost forgot what they felt like, last night I couldn't even load a syringe my eye swelled shut and I begain to remember what a 9 or 10 was, I've been getting hit with 4's and 5's over the last couple weeks and was just hoping they would pass, I should know better I've been dancing for almost 30 years now. I went and grabbed D3 5000 and Omega3 1200 this morning. Starting today, I took 10K D3 and 3600 Omega 3 this morning and feel pretty good about my chances. Love you Batch I will keep you updated.......Norm

Title: Re: 123 Days PF And I Think I know Why
Post by ICY on Mar 12th, 2011 at 7:53pm
Day 2 of trying the new regime of 3000mg omega3 and 1500iu D3 have resulted in a virtually pain free day, I am currently in the second lot of Pred tapers, and the last 5 days onwards them have been tough, I am now down to the penultimate day of current taper and feeling quite good, still have a mild headache but nothing I cant cope with.

There looks to be some improvment and the only change is the D3 and Omega3.

This is possibly a coincidence as last year my cycle ended in March, so will keep taking for a couple of weeks then drop them and see if this horrid creature returns, if so then I am hooked on these suppliments for ever :)

Title: Re: 123 Days PF And I Think I know Why
Post by River_Rat on Mar 13th, 2011 at 10:24am
UPDATE AS PROMISED;

Day one; Took 10,000 i.u D3 and 3600 Omega3 fish oil, I had nothing until about 10pm then got nailed with a kip 6-7 it lasted 20-25 min, fell asleep and slept all night (nice) until my unual 6am

Day two, had a shadow most of the day but then at about 4 I decide to have a little Vodka (I haven't drank in about 6 weeks) after about 3 drinks the shadow went away and I got very drunk (FUN), went to bed and slept all night, I just woke up a few minutes ago and my head is clear, not even a shadow.

Day three; TBD FEELING GREAT. Headed to Wisconsin Dells in a few minutes I will update more when I get back, or if I can get online I will update while I'm there.

You Da Man Batch!

Title: Re: 123 Days PF And I Think I know Why
Post by Jair Crawford on Mar 13th, 2011 at 5:05pm
I am seeing a recurring pattern with everyone here who has tried this. Day one on the regimen, the intensity of the attacks seems to be going down by about half. Then on day two, everyone is posting that they are practically pain free. I mean, every. single. person. This is amazing!

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Mar 13th, 2011 at 8:39pm
I was talking to a friend yesterday who gets regular migraine headaches and went on D3 (2,000 IU/daily) two years ago.  She said her incidence of getting them went from from dozens per year to just a couple per year.  She further told me her M.D. was shocked that her D3 levels were within normal range.  He went on to say that only one other of his patients had normal levels, every other patient was far below normal.

Title: Re: 123 Days PF And I Think I know Why
Post by Dashawn on Mar 13th, 2011 at 8:41pm
First I just want to say hello. I have been almost CH free for 4 years and got my first headache this past Thursday. I honestly believe it has something to do with the changing of the seasons as Daylight savings time is today. So I cam across this thread and I started it on Friday.
I normally take a 1200mg fish oil everyday and have been taking it for the past 3 years. So Friday I went and for some Vitamin D3. Here's my schedule

Friday
4800 mg fish oil
15,000 IU of Vitamin D3
1 headache at 11:00pm
took 100mg Imitrex

Saturday
4800 mg Fish Oil
15,000 IU of Vitamin D3
1 headache at 10:30pm
took 100mg Imitrex

Sunday
4800 mg fish oil
15,000 IU of vitamin D3
1 headache at 12:30pm
took 100mg Imitrex

One thing I noticed is that my headaches are less severe. And they don't last as long. Also I noticed that the patterns are real sporadic. I'll let you all know if I get a headache tonight. I'm trying to take detailed notes on the time and how long they last.

Title: Re: 123 Days PF And I Think I know Why
Post by red ryder on Mar 15th, 2011 at 9:28am
Just wanted to let everyone know I have gone 2 weeks without a headache after starting this formula. My cycle usualy goes around 6-8 weeks this time only 2 weeks with headaches before starting the D3 etc... and none after the second day of taking the full amounts Batch recommends. I am starting to taper the verap down from 400 and now at 240 and still no headaches. The only other thing I am on is 6 mg melatonin at night.

In my 17 years of headaches this is by far the easiest cycle ever. I have no doubt there is something to this formula. Thanks for all your hard work and research Batch. I can't wait to try a cold beer in a week or so!!!!!!     Jay

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 15th, 2011 at 10:39am
Hey Jay,

That's great news!  Come up on Skype when you're ready and I'll join you in knocking back a cold brew face to face.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by red ryder on Mar 15th, 2011 at 2:39pm
Don't have the Skype yet. Need to get more tech. savy!! Again batch thanks I will let you know how the beer test goes in the next couple of weeks.    Jay

Title: Re: 123 Days PF And I Think I know Why
Post by dazza on Mar 15th, 2011 at 10:53pm
I live in New Zealand, the stongest 3D you can buy is 1000iu here so ordered some 5000iu on line from the USA only to have them held back  at Auckland international mail center. They say anything over 1000iu is prescription only  >:(

Title: Re: 123 Days PF And I Think I know Why
Post by Mike NZ on Mar 16th, 2011 at 3:52am
I've been taking 1000iU for a while, but really noticed my CHs have drastically dropped off over summer as I spend a lot more time outside, which with the bright sunlight we get here in NZ will mean that my body is also making lots of D3.

Title: Re: 123 Days PF And I Think I know Why
Post by River_Rat on Mar 16th, 2011 at 7:14pm
UPDATE AS PROMISED

Day 6, just got back from Wis Dells, had a couple shadows thats about it, I'm sure the chlorine from the inside water parks didn't help. Drank some dark beer, regular beer, vodka, red wine, and a bunnch of other stuff and the head is clear. I'm calling this a fix, I know my body, I either get hit or I don't and I'm not.

Good Luck to everyone I'm out ;D

I'll be back if I get hit again!

Thanks again Batch

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Mar 17th, 2011 at 2:45pm
Hi Batch

Thanks, the vitamin-d is amazing. I'm still CH free, now for 2½ years.  :)

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Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Mar 17th, 2011 at 4:37pm
A painful reminder to everyone on this board, we should not be so swift to disregard potential new treatments. Batch was not the first one to suggest Vit D as a potential treatment, the first person to suggest it was driven from the board a sa charlaton.

I don't claim there wasn't sufficient blame on both sides of the coin...if you feel driven to immediatley respond to this post....ask yourself if maybe you could have responded differently to the original post, and many people could have availed themselves of an effective treatment much sooner.

Won't argue the point...just something to think about.

Joe

edited to fix spelling

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Mar 17th, 2011 at 5:16pm
Hi Joe

I want to apologize my part that the vitamin D debate went off track. I will hope everybody will try the Batch formular and hopefully get the same result as I did.  :)

Title: Re: 123 Days PF And I Think I know Why
Post by MorDog on Mar 17th, 2011 at 6:16pm
Hello all,

Background: 16 years  episodic, went 25 months PF until the middle of this past February.  Mostly the night hits but sometimes just before or just after bed.  Also shadows, zaps, and the occasional regular headache.

I just read through this thread.  First let me say I am so glad this has worked for so many.  Coincidently I had already been taking Fish Oil with Omega 3 1000 mg and 2000 IU of D3 for some time just for the health benefits.  However, I still started my cycle and I am in my 5th week.  The only difference I have had this time is I seem to skip days with hits.  I might have 1 or 2 hits a day for 3 or 4 days in a row then be PF for 1 - 3 days until the hits come back.  I noticed the amounts you all are taking of the supplements are higher than what I am currently taking so I am going to try the higher doses and see what happens.  Hopefully I can get the same results as the rest of you.  I know we are all different and this may not work for me but I am willing to give it a go.

Title: Re: 123 Days PF And I Think I know Why
Post by julieknfla on Mar 17th, 2011 at 6:29pm
Well, Nhs, I am sure most of us realize Batch did not invent Vitamin D. :P  He was only stating what is working for him. I am very thankful that he started this thread. I believe this concept of how low blood serum vitamin D may be playing a part in CH, and the ca-mag-d-fish oil suggestion  be repeated OFTEN, or archived in an easy to find link like Johnny recommended. Alot of us come and go, and when we come here, we are looking for ways to deal with the beast. Through the years, I have used and appreciated so much advice given here; Barry suggesting taurine, Johnny and Linda Howell helping me to understand how to use the high flow oxygen in the most effective way and so many other helpful suggestions. Remember we are all here to help eachother!
I am still having pretty good luck with this regimen, I Have'nt had over a kip 4 since the fourth day of it. I'm sleeping better, and have had a BIG decrease in the frequency as well as intensity of hits. As Guiseppi stated it's not a cure, but in my opinion it's pretty close. Thanks again Batch!! :)  MorDog, I think you will notice an improvement on the higher dosage. I didn't notice a HUGE effect until I upped my dose to 8300 MG of D3, I did however, order a home testing kit recommended by the vitamin D council  to take in the next month or two.

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Mar 18th, 2011 at 4:22am
Hi Folks
Batch & I have been corresponding by PM & Email on this regime for some time as I wanted to get a good grip on just what Batch did in his research & his documentation & as I stated earlier in this thread

I started on a magnesium/calcium regime in April 2006 & had varying results with remission from high cycles (I'm chronic) until around July 2008 it was about that time that the Magnesium/Calcium supplements I was taking changed when the manufacturer added Vitamin D3 to the mix, I have now been 880 days in low cycle with only shadows & the occasional ice pick jab.”
What I haven’t been able to achieve is a stabilisation of my pH levels, I bought some Urine/Saliva test strips to monitor my pH levels & stayed away from food or substances that would raise my pH into the alkaline area but with no success.
The possible reason for this is I have gone into a high cycle just as I started monitoring but with some promising results; I got a minor hit 19/2/2011 at about a KIP 3 missed a couple of days then hit again & so on but only getting 2 hits that reached the KIP 8, the interesting thing is that I think this cycle may be coming to an end as I haven’t got a hit in over 34 hours only heavy shadowing.
If this is indeed the end to this cycle it will be the shortest high cycle I have had since going chronic back in late 2004 the previous shortest high cycle was 50 days, this one currently 27 days . & this has never happened in the past before the D3.

My Total best PF period was 940 days with only shadows & the occasional ice pick jab.

Another point that Batch made was the weight loss he achieved believed to have come from the fish oil sups’ I normally weigh 62 kilo dripping wet & I have dropped to 56.5 Kilo so I stopped taking the fish oil before I disappear down the drain pipe while showering.

What will be interesting is how long a remission Batch gets with this regime “ I hope its forever” but only time will tell & what is important is that if we can get lengthy remission periods & reduce the length of time we are dancing then that puts us in a better position than we could have hoped before.

PF time people.
Cheers
Barry

Title: Re: 123 Days PF And I Think I know Why
Post by wimsey1 on Mar 18th, 2011 at 8:02am
As those of you who have read my recent posts know, I went back into chronic cycle when my neuro decided to "test" the effectiveness of the verapamil I was taking. At the time I was taking 400mg/day and only getting hit once or twice every 3-4 days. So, down I went, over a 4 week period, to 320mg/day, and whooop, there it is! Daily hits; nighttime hits; chronic cycle ramping up into full swing.

So...I'm back up to 400mg/day, and before I try to go even higher on Verapamil, I'm going with Batch's regime.  I had begun the D3, now I've added the Fish Oil and Ca-Mg-Zn tabs as well. I'll let you know how it goes. Blessings. lance

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Mar 18th, 2011 at 8:12am
Best wishes for PF, Lance!

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 20th, 2011 at 4:16pm
Hey Barry,

Thanks for the kind words.  Measuring saliva pH can be a crap shoot at times as pH levels can and will jump around throughout the day and from day to day.  The best way to determine systemic pH using saliva pH as an analog is to do at least three measurements at the same time each day and average them. The sampling technique is also important.

In an attempt to characterize the role of arterial pH in the pathophysiology of cluster headache triggering and abort mechanisms, I conducted a small test by measuring the pH of my saliva before a cluster headache and five minutes after an abort with oxygen therapy at flow rates that support hyperventilation.  I also did this over a two-week period to see if there were any trends without any overt change in diet.

I started by collecting saliva pH measurements three times a day as an analog of arterial pH in order to generate a daily average.

I then measured my saliva pH after awakening with a cluster headache and again following the abort with this method of oxygen therapy plus 5 minutes to allow for the saliva pH to equalize with arterial pH.  The results of this two-week test are illustrated in the graphic below.

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The green line is my daily average saliva pH computed from measurements taken in the morning prior to breakfast, mid-day prior to lunch, and in the evening prior to going to bed.  I rinsed my mouth with water and waited 5 minutes prior to each of these pH measurements to ensure I minimized the effect of any contaminants that could skew the results in one direction or another.  For example if you take a swig of Coke or Pepsi then take a saliva measurement it will read very acidic with a low pH.

The red dots and lines in the above graphic represent my saliva pH measurements taken as soon as I awoke with a cluster headache and the blue dots and lines represent the saliva pH measurement taken 5 minutes after the abort with oxygen therapy.

All the cluster headaches occurred while sleeping and were between pain level 3 and 4 on the 10-Point headache (Kip) pain scale. I aborted all of them with oxygen therapy at flow rates that support hyperventilation (35-40 liters/minute) in 3 to 4 minutes to a pain free state.

I also added pulse oximetry readings starting on Day-7 taking readings at the same time as the saliva pH measurements.  The results are what I expected.  I suspect if I would have had use of a capnometer, I would have seen significantly higher ETCO2 readings than normal upon awakening with a cluster headache.  I also expect these ETCO2 reading would be clearly higher than after the abort with oxygen therapy at flow rates that support hyperventilation.  The reason for the low ETCO2 readings following an abort with this method of oxygen therapy is simple.   This method of oxygen therapy casts of CO2 faster than the body generates it through normal metabolism.

Days 5,10, and 11 I had no CH.  During the evening of Day 14 I had three CH.  This coincided with the day where my daily average saliva pH was lowest.

As you can see from all of the nights where I had a cluster headache this method of oxygen was able to elevate the pH of my saliva on every attempt.

Granted this data is clearly anecdotal with me being the only study subject.  Having said that, the data and results were consistent with what we expected.

Influencing systemic pH with diet and calcium citrate supplements is a horse of a different color as this process is largely metabolic in nature so it occurs at a much slower pace taking several hours where elevating arterial pH with hyperventilation takes only a few minutes.

There's enough medical evidence from a few studies to suggest calcium citrate and citric acid from lemonade or limeade acts as a buffer on the stomach's gastric juices and contents to raise their pH from 2.0 up to a pH of 4.9.  There are also a sufficient number of papers claiming a diet of alkaline forming foods can raise systemic pH.  See the following link:

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Ultimately, anything that can raise systemic pH to the high end of the normal pH of 7.35 to 7.45 or above should stimulate vasoconstriction and that should help lessen the frequency and intensity of cluster headache.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Mar 20th, 2011 at 6:24pm
THAT GRAPH IS BEAUTIFUL, BATCH, BRAVO!
What did you use to measure the pH? Litmus paper? If so what kind?
-Gary

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 21st, 2011 at 12:51am
Hey Gary,

I used the pH test strips from pHION at the following link:

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Shoot me an email and I'll send you the excel worksheet Michael Berger developed that I used during this test.  Update the date then fill in the data and it will build the graph automatically.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by River_Rat on Mar 21st, 2011 at 10:06am
Good Morning everyone, well the 10K I.U. of D3 and 3600 Omega 3 fish oil is started to wearing off. I was great and HA free, just a few shadows.

Short Recap........Started getting hit the mid to end of Feb, nothing big just a few short lived Kip 4's and 5's, I didn't really do anything about it until around the first part of March then started taking 400mg Verap, 200 in the morning and 200 at night no real change still had the Kip 4's - 5's short lived 20-25 minutes then on March 10th got slammed with a kip 9/10 that jarred my memory as the what these things can do. I logged on and read this thread. March 11th I started the D3 and Fish Oil as suggested and was pretty much clear, couple shadows k1to k2 but nothing to bad. I thought I was fixed, everything was fine for about 5 days so I was pf until the 17th then got slammed with a kip 8-9 after that one slipped away I had a kip 4ish shadow that never left, during this never ending kip 4 it would ramped up to a 7 to 9 three to 4 times that day. The evening of the 17th I decided to doubled my verap to 960 mg and have been pf since, I'm still taking the D3 and fish oil. So right now I'm taking 10K I.U. D3 and 3600 Omega 3 Fish oil and 960 MG Verap and so far so good I've now been PF for 4 days and nights. What are your thoughts on taking 960mg of Verap? Thank's in advance for you comments.

Title: Re: 123 Days PF And I Think I know Why
Post by Kimmie on Mar 21st, 2011 at 2:24pm
[size=14][/size]I know no question is a stupid question.
Being a 38yr old female (episodic)...

I take women's daily multi vitamins and in the summer I am constantly in the sun on the lake.
My weight is 121, so what would you recommend my beginning dosage od D3 and fish oil supplements start out to be safe?
I am not in cycle now, but loom the seasonal changes in Spring and Fall.
Here in Texas, as of current the air allergen quality is at it's highest (12).

I take Paxil, Alprazolam, and Remeron daily for anxiety and wonder about swinging in these supplements may do.

-Kimmie

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 21st, 2011 at 6:17pm
Hey Kimmie,

You're right... No such thing as a dumb question.

The short answer is 5,000I.U. vitamin D3/day as a maintenance dose and 10,000I.U./day for a therapeutic effect.  There shouldn't be any problem taking either dose with your other med's, vitamins. In fact, the vitamin D3 may help you ween off of the anxiety med's and help combat any allergy as well.  Magic stuff...  Free too if you go out in the sun in a swim suit for 30 minutes...  The skin can make the equivalent of 10,000I.U. in that short amount of time provided you're not using any sun block.

If you go through the attachment I added to this thread in post #73 you'll see both the therapeutic and maintenance dosage for vitamin D3 as well as the new target 25(OH)D3 levels suggested by Dr. Lewis and a lot more.

He lists the following levels for 25(OH)D3 as a practical guide to diagnosis and management. Take these figures or the paper along if you see your physician for a test.  25(OH)D3 is the vitamin D3 metabolite found in the blood. The following 25(OH)D3 levels are in nmol/L:

  • <100 = Deficient
  • 100-200 = Optimal
  • 135-225 = Normal in sunny countries
  • 500+ = Potentially toxic (this would require a sustained daily intake >/= 40,000 IU)

[Note: To convert from nmol/L to ng/ml, divide by 2.5]

Most of us on vitamin D3 are also taking 2000mg. to 3000mg. of the Omega 3 Fish Oil and two of the calcium citrate tablets formulated with vitamin D3, magnesium and zinc.

My wife is on this complete regimen and she doesn't have CH.  She's got more pep, getup & go and bounces around like a kid.  Me too for that matter.  This is also a healthy heart regimen you can take year round.

Download and read the paper by Dr. Lewis...  Very telling.

Take care and let us know what happens when your usual episodic cycle normally starts.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by oxyrunner on Mar 22nd, 2011 at 4:30am
Hi, just wanted to update you on how things are going - I started taking 10,000 i.u 3D, 2000mg omega 3 and 1 cal mag. CH stopped but the dosing caused constant nausea. I cut the dose by half and over the week the CH gradually came back until yesterday when I have 4, all about a kip 4 - 5 and all lasting nearly 2 - 3 hours!!!!! making it really difficult to work. ( does anyone else find they can't wear glasses whilst having a CH? ) So I am now trying 4000 i.u 3D, 1000mg omega, and 1 cal mag with breakfast and 6000 i.u 3D, 1000mg omega 3 and 1 cal mag with dinner, fingers crossed.

Title: Re: 123 Days PF And I Think I know Why
Post by skeevedout on Mar 22nd, 2011 at 11:30am
Hey all-
Just started with 10,000 IU D3 and 3000 Omega 3 Fish oil. I will post daily results for the next couple of days.
Best Regards to All

Title: Re: 123 Days PF And I Think I know Why
Post by red ryder on Mar 22nd, 2011 at 4:36pm
Beer test passed!!!!! Thanks everyone for the help, Batch I think you are definately on to something here with this formula. I was ready this time with the O2 and 25 lmp regulator. Wow only 2 weeks with the headaches all knocked out with the o2 at night, then started Batch's formula and nothing after the second night of his full strength formula. I promiss to stick around  this time, to see others trials with this and help when I can.   Jay

Title: Re: 123 Days PF And I Think I know Why
Post by skeevedout on Mar 23rd, 2011 at 9:14am
Hey all-
Reporting on my first night after using 10,000 u.i. B3 and 3000 u.i. of Omega 3. I got hit 3 times last night. The first being the most severe at a 7 or 8, the second a 5 or 6 and the third a 4 or 5 (1:30 am). Slept the rest of the night which IS an improvement. Took my B3 and Omega 3 doses this AM. I will report back tomorrow AM on tonight's results.
Best to All.

Title: Re: 123 Days PF And I Think I know Why
Post by Brew on Mar 23rd, 2011 at 9:24am

Quote:
Magic stuff...  Free too if you go out in the sun in a swim suit for 30 minutes...  The skin can make the equivalent of 10,000I.U. in that short amount of time provided you're not using any sun block.

Be forewarned, however - not the best method for extremely white guys like me who have just had their fourth basal cell carcinoma removed via surgery.

I think the capsules are a better alternative for my ilk.

Our parents were more concerned with keeping us out of the pool for an hour after we ate (lest we get "a cramp") than they were about keeping our basal layer of skin from being repeatedly damaged by the sun.

Title: Re: 123 Days PF And I Think I know Why
Post by Kimmie on Mar 23rd, 2011 at 12:43pm
Going to the supplement store :)

I'm assuming it is probably better to start my regimene now until waiting for cycle.

Thanks Batch! :)
xoxo

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Mar 23rd, 2011 at 9:12pm
Kimmie

This is the sort of thing we need to see happening, if by taking these sups you can defer or put off completely an episode it can only give others hope.
Fingers crossed that it goes well for you young lady.

Cheers
Barry

Title: Re: 123 Days PF And I Think I know Why
Post by skeevedout on Mar 24th, 2011 at 8:03am
Good Morning-
Well, last night (after two days of 3000 UI Omega 3 and 10,000 UI D3)-I had 4 visits from the beast, the first was nothing, a KIP 2 (at most) before bed, second hit was off the hook (9) and when it left I had a dull pain behind my eye and sinus till the next hit came (6 or 7). Got a few hours sleep till I was woken by one more mild hit (3 or 4, enough to wake me up). I am wondering wether or not I should continue w/the 3000 UI Omega 3 and the 10,000 UI D3.............

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 24th, 2011 at 10:57am
skeevedout,

Thanks for the feed-back.  Are you also taking the calcium citrate tablets formulated with vitamin D3, magnesium and zinc?  More that a few have found adding a couple of these tablets a day helps. 

There are other ways of measuring the effectiveness of this regimen...  For example, is your oxygen therapy working better with faster aborts? Do you feel better in general?

We're still collecting data on this regimen and although several CH'ers are experiencing a reduction in the frequency and intensity of their CH in the first two days after starting it, others appear to be taking a little longer.

As to continuing or not...  that's your call.  Like all other types of treatments for our disorder, none are 100% effective. 

To my way of thinking, it's all a matter of assessing the risk-benefit ratio. 

If the risk of harmful side effects is low and the benefits appear to offer only a marginal improvement...  it's a push.

If the risk of harmful side effects is relatively high and the benefits appear marginal...  you need to make a decision...  is the treatment worth taking?

If the risk of harmful side effects is low and the benefits appear high...  It's a no-brainer.

Would you continue to take verapamil if you were still experiencing the same number of heavy hits a night?

What I can say is this is a very healthy regimen with no harmful side effects and a high upside potential to keep you as healthy as possible.  My wife is on this same regimen and she doesn't have CH.  She feels great and bounces around the house and yard like a kid.  Me too for that matter.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by skeevedout on Mar 24th, 2011 at 11:19am
Batch-
Thanks for chiming in, I am not taking the calcium citrate tablets formulated with vitamin D3, (Is this the 10,000 I.U. w/the calcium citrate in one tab?), the magnesium nor the zinc. I will pick some of this up today. I did indeed decide to do another daily dose of 10,000 IU D3 and 3000 IU of Omega 3. I am not on any O2 or Verapimil (Doc gave me a script for Sumartripan (six single-shot inhalers) which worked like a charm while I had them (waiting to hear back about a refill [Insurance will only cover 6 a month but my doc says he is going to try to change that for me]). Have had CH since mid-20s, 49 now and over the last 10-15 years, attacks are less frequent and more manageable (till 2 weeks ago). Last bout w/the beast was 3 years ago. I will post tonight's adventures tomorrow AM.
Thanks Again and Best Wishes to All

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 24th, 2011 at 12:33pm
Hey Skeevedout.

Good question.  The complete regimen is actually a combination of two separate regimens I've used to lower the frequency and intensity of my CH...

I originally started using them to improve the abort times with oxygen therapy during high cycles where the aborts with oxygen therapy took longer than usual.

We think the anti-inflammatory regimen works to reduce the neurogenic inflammation in and around the trigeminal nerve that's associated with the cluster headache syndrome...   The buffering regimen elevates arterial pH making it more alkaline in the hopes of reducing the vasodilation also associated with the cluster headache syndrome. A low arterial pH (too much acid) tends to trigger vasodilation and that aggravates CH.

The anti-inflammatory regimen consists of 10,000I.U. vitamin D3 and 2000mg to 3000mg Omega 3 Fish Oil taken daily.

The buffering regimen consists of 2 to 3 of the calcium citrate tablets formulated with vitamin D3 (800I.U. in two tablets) magnesium and zinc washed down with citric acid from lemonade or limeade taken each day.  I've also used margarita mix as it has additional citric acid. 

The combination of calcium citrate and citric acid acts as a buffer on the stomach's gastric juice and contents elevating the mix from a pH of 2.0 up to 3.9.  The magnesium helps in this process as well.

Hope this helps clarify what I take on a daily basis.

Regarding oxygen therapy... it is the most effective and least invasive cluster headache abortive available to us.  It has no harmful side effects.  It's also the least expensive abortive and there's no limit on insurance coverage like there is on imitrex due to it's cost. 

If used at flow rates that support hyperventilation, oxygen therapy can result in abort times that rival the subcutaneous injections of imitrex (sumatriptan succinate).  I would typically abort my CH in 3 to 4 minutes with this method of oxygen therapy if I caught the CH early.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by skeevedout on Mar 24th, 2011 at 1:20pm
Thanks again Batch !!!
Just heard back from the Doc AND my Insurance Co. Insurance Co. says any more than six doses of the Sumartriptan is DANGEROUS/NOT SAFE, (I think that they just don't want to pay the $225 for six measly doses) so no more "Magic" cure for me. Doc is going to prescribe Verapamil. I have an appointment w/a Neurologist Mon. (like finally meeting the wizard of Oz) - will see what he has to say. Might have to look into O2 soon.
Thanks Again/Best Regards

Title: Re: 123 Days PF And I Think I know Why
Post by Mike NZ on Mar 24th, 2011 at 2:00pm

skeevedout wrote on Mar 24th, 2011 at 1:20pm:
Might have to look into O2 soon.


Don't just think about oxygen, do it. You'll soon see why so many of us who use oxygen so effectively to abort our CHs sing it's praises. Having used oxygen to abort CHs for over six months there is no way I want to go anywhere without a cylinder knowing I can be pain free in minutes (average is under 6 minutes) with no side effects.

Title: Re: 123 Days PF And I Think I know Why
Post by oxyrunner on Mar 24th, 2011 at 6:32pm
I think I have finally got my dose right and am now pain free  [smiley=2vrolijk_08.gif] . I take 6000 i.u D3, 1000mg omega 3 and 500mg calcium, 200mg magnesium with fruit juice at breakfast and the same again with dinner. I have no nausea, CH, or shadows, in fact I haven't felt this good since I dont know when.
Thanks Batch for the advise, it really helped.   [smiley=dankk2.gif]
I know this works because when I halved the dose my CH came back and within 2 days of taking the full dose again they stopped. I'm not brave enough to do it again - not for a while anyway.
I really hope everyone that reads this thread will give this a try - you may have to adjust the doses to suit you but in the end you have nothing to loose.

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Mar 24th, 2011 at 11:25pm

oxyrunner wrote on Mar 24th, 2011 at 6:32pm:
in the end you have nothing to loose.


Exactly: you will never know if you like banana ice cream if you never try it  [smiley=thumbup.gif]

Title: Re: 123 Days PF And I Think I know Why
Post by skeevedout on Mar 25th, 2011 at 7:28am
Same, same as last night. Today I will add calcium citrate, magnesium and zinc........

Title: Re: 123 Days PF And I Think I know Why
Post by julieknfla on Mar 25th, 2011 at 10:37pm
I have been TOTALLY PF a whole week now, even got to celebrate with a few beers yesterday!  I've been on the supps a total of 3 weeks today. According to my notes, I began taking 7,300 IU Of D3, 1200 mg calcium, 2,000 mg of fish oil, 750 mg magnesium, 50 mg zinc, Within 3 days the hits were fewer, and no more than a kip 4. I upped my D3 to 8,300 IU after the 5th day of beginning the supps, and started taking benadryl and 10 mg melatonin at night, after which I had a vast improvement where I was having PF nights about every couple of nights, with the hits I did get being so light I didn't even need my oxygen. 14 days after starting the supps, I was totally PF, This was only 3 weeks into my cycle-my last cycle lasted 8 weeks. Oh, and as an added benefit, I am sleeping more soundly than I ever have! I will begin lowering my vitamin D dose to about 5,000 IU until I take my vit d level.  I am a believer, thanks, Batch!  [smiley=clap2.gif]

Title: Re: 123 Days PF And I Think I know Why
Post by Brew on Mar 25th, 2011 at 10:40pm
Anybody know where to get D3 in bulk, i.e., at a decent price? 10,000 IU per day gets a bit pricey at retail.

Title: Re: 123 Days PF And I Think I know Why
Post by julieknfla on Mar 25th, 2011 at 10:58pm
walmart has their brand calcium citrate 630mg with 500 IU vitamin D (in 2 caplets) ALOT cheaper, than the name brands, although they are ALOT harder to swallow (horse pills).  They also have the 2,000 IU softgels D3-in a twin pack pretty cheap. And a multivitamin would add probably 800 IU of D 3  (mine does) I take a calcet petities 750 IU  vitamin D with 600 mg calcium per 3 tabs. Another easy-to swallow one is Citracal petites-500 IU of d, 400mg calcium in 2 tabs.

Title: Re: 123 Days PF And I Think I know Why
Post by dereksgirl on Mar 26th, 2011 at 12:11am
we get ours at Costco as Batch suggested. Good Brand name for a decent price. Not sure if there are any Costco's in your area though.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 26th, 2011 at 1:59pm
Oxyrunner, Julie,

More success stories...  We're starting to get the statistically significant numbers needed to grab attention among the leaders in the field of neurology specializing in CH... 

This is good!  In the mean time, we still have a few who are not experiencing the same favorable results from this regimen as others so I don't want to be too exuberant.  That said, it does appear we're on to a very healthy and inexpensive alternative when it comes to CH preventatives.

I'm still running the numbers and so far it looks like this regimen is well ahead of verapamil in effectiveness at better than 70% effective.  The Cluster Headache survey that 1134 of us took in 2008 indicates 371 CH'ers out of the 725 (49.7%) who took verapamil, rated it effective.

Brew,

I'm half Scott/Scotch and a member of the Over the Hill Gang on a mostly fixed income so I look for good deals.  I figure my daily cost of the combined regimen of Omega 3 Fish Oil, vitamin D3, and calcium citrate+ shown below at 16 cents. 

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I buy these items at Costco.  Sam's Club has some of these vitamins and minerals under Member's Mark label.  You can buy the Kirkland brand over the Internet from Amazon or go to Puritan's Pride web site. They carry the same items.

Costco has the best deal on the 5,000 IU vitamin D3 softgels
$6.99 after $2 OFF Trunature® Vitamin D3 5000 IU Extra-strength 500 Softgels  < 3 cents/day 20 cents/week

Sam's Club:
Member's Mark® Vitamin D-3 5000 IU - 400 softgels  $10.68  < 6 cents/day, <38 cents/week

Puritan's Pride SUNVITE™ MAXIMUM STRENGTH VITAMIN D (D-3) 5000 IU
500 softgels for $14 <6 cents/day,  <40 cents/week

Hope this helps.

Take care,

V/R, Batch


Title: Re: 123 Days PF And I Think I know Why
Post by Brew on Mar 26th, 2011 at 3:09pm
That helps quite a bit, Pete. I've been paying too much for D3.

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Mar 26th, 2011 at 4:14pm
Hi

If you don't take vitamin-d softgel's, it's very important that you take the D together with your meal, because vitamin-D is a fat-soluble vitamin.


Title: Re: 123 Days PF And I Think I know Why
Post by julieknfla on Mar 28th, 2011 at 5:32pm
Why is that? To keep from upset stomache? or to absorb  them better? Sorry for not understanding what you mean. I usually have to be careful what I take, as I am very stomache sensitive...I have had no problem taking the supps, although I did notice I had a problem on St. Patricks Day with the corned beef. I really belive nitrates are very bad during the cluster cycle, and afte reading about ph on batch's posts, I have been trying to eat all alot more alkaline forming foods. (which are better for me anyways)
  Batch, I really hope we are finding an answer...although I don't think the medical field will be to anxious to do a trial... doesn't make the pharmaceutical companies tons of money like verapamil and prednisone.

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Mar 28th, 2011 at 6:29pm
Hi Julie

Yes, the vitamin-D needs fat to get absorbed.

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Mar 28th, 2011 at 11:08pm
For some time now I have been trying to get a better balance of my pH but to no avail so a little looking around brought me to the food list below.
Breakfast this morning was fresh broccoli & a banana, saliva & urine pH before breakfast was 5.5 "acidic" one hour later pH for both was 6.4 "just below neutral".
I am going to continue with the Magnesium/Calcium/D3 as I have had such good luck with it over the last three years but will concentrate my food intake on the foods that leave an alkaline residual, I'll update how i am going .

A list of Alkaline foods can be found here or just google Alkaline foods.

Cheers
Barry

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Title: Re: 123 Days PF And I Think I know Why
Post by wimsey1 on Mar 29th, 2011 at 7:37am
I've been taking the D3, Fish Oil, and Ca/Mg?Zn tabs, but...while I'm sticking with the first two, I think I react badly to the Mg. This is the second time in a couple of years I've tried Mg and both times, I think it induced a more intense CH cycle and experience. No problems with D3 and Fish Oil, and they may actually be helping although I'm still getting a daily hit. I know that's not so bad (boy do I know) but I want to see how I do when I drop the Mg. If I find anything significant I'll post here. Prayers for us all! Blessings. lance

Title: Re: 123 Days PF And I Think I know Why
Post by ClosetCHer on Mar 31st, 2011 at 9:42pm
Batch,
Thanks for your original post and research into this possible treatment for the beast. I don't post here much but I recently started another cycle and I'm always looking for something new to try. I hate medications and refuse to take them, even if that means suffering the pain of the CH (which I do about 99% of the time). I normally get hit once in the morning and once in mid-late afternoon. I'm going to head to the nearest pharmacy tomorrow and pick up the items for this cocktail and see what it does for me. I'll post my findings in a week or so once the mixture has time to run its course.

Title: Re: 123 Days PF And I Think I know Why
Post by wildhaus on Apr 3rd, 2011 at 12:58pm
Pete!

Isn't it time you give Peter (Sandor) and Arne (May) a call.....

Michael

And.....  back to my obscurity.... and flying sailplans...

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 3rd, 2011 at 6:36pm
Michael,

It's getting close...  A few more success stories and I'll send the letter with the latest stat's to Doctors May, Sandor, and Rozen.

Hugs to Marta, JJ and Ben.

Take care my friend, and keep soaring those big Swiss mountain waves and thermals...

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 3rd, 2011 at 6:43pm
ClosetCHer,

Thanks for the kind words.  I share your dislike for the invasive CH meds.  As long as I've had oxygen at high enough flow rates to make for rapid aborts, I've always preferred instead to give my body what it needs to get well instead of what I wanted to prevent the pain.

Good luck with this regimen...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by primetime on Apr 5th, 2011 at 10:48am
I'm on board too.

Just started yesterday with Vitamin D3, Omega 3 and Calcium Citrate (plus magnesium, zinc, B6 and vitamin D). All this in addition to my Flinstone multi vitamin.  :)

Silly question, is the vitamin D that's in multi-vitamins the same thing as vitamin D3? In other words, can the vitamin D in the multi-vitamin be counted towards the 10,000 IUs of D3?

Title: Re: 123 Days PF And I Think I know Why
Post by ClosetCHer on Apr 5th, 2011 at 11:25pm
Batch/All,
Figured I'd give an update now that I've been trying the D3/Fish Oil regime since last Friday morning.

My cycle prior to starting this had been going for about a month and a half and had just started to ramp up. I was getting about around 2-3 attacks a day, fortunately only 1 was going above a KIP 5. I don't take any other type of medication, I don't have 02 right now (working on welding supply route), and I don't see a neurologist. My cycles occur in no regular pattern, last anywhere from 4-8 months, at one time I was chronic for 2 years, and have remission periods of 1 month to 1 1/2 years (the 1 1/2 years only happened once but I wish it would happen every time!)

I started on Friday by taking 10,000 IU of D3 (5 x 2,000) and 3,600 Omega 3 Fish Oil (3 x 1,200) and did that through Sunday. On Monday morning I increased the D3 to 12,000 IU.

On Friday and Saturday I had my regular 3 hits with one each day turning into a full CH (KIP level 7-8, 30 minutes long each). The other hits were mainly shadows with pain at a KIP 1-3 (very manageable). For Sunday, Monday, and today I've generally been pain free with some major shadowing. By major shadowing I mean almost all day, ranging from just a slight annoyance to the brink of transitioning into a CH. I've never experienced shadowing like this nor the feeling associated with it. The feeling is pressure/light pain on the left side of my head, right on my temple. About 5 times each day (Sun, Mon, Today) the shadowing seems to head towards a CH, sometimes increasing in pain for only a minute or so and sometimes dragging on for 30 minutes, making me wonder if it will become a headache or not. Only once, Today, did the peaking turn into a CH. The bout today lasted 30 minutes and I would describe it as a combined shadow/CH, about a KIP 6. That's the only way I can describe it because I hadn't experienced one like that before.

Since I've never experienced shadows like this nor have I been able to have 3 days PF during my cycle (minus the weird shadow/CH today), I'm assuming this is a result of the D3/Fish Oil regiment. I'll be honest and say that the constant shadowing is annoying, especially with the peaking that makes me wonder if it will turn to a CH or not. But on the other hand, I'd rather have that than 3 CHs that can possibly reach a KIP 10 (more near the end of my cycle). I'm wondering if I should increase my D3 to 15,000 IU, decrease D3, try to mix in the calcium citrate, or something else to tweak my results. Maybe too much D3 is causing the heavy shadowing or maybe I need more to eliminate the shadowing and accompanying peaks all together.

Batch/anyone have thoughts on this? I love feedback.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 6th, 2011 at 3:48am
Hey Primetime,

Welcome to the group...  We look fwd to a followup post on your results with this regimen... 

The answer to your question is Yes, your multivitamins likely contain vitamin D3, but the amount is so low I wouldn't worry about counting it... 

For example, two of the Kirkland brand calcium citrate tablets contain 800I.U. vitamin D3 and I still take the 10,000I.U. dose of vitamin D3 softgels. A few hundred I.U. over the 10,000I.U./day of vitamin D3 won't hurt and that's still be far below the mega-dose prescribed by some physicians. 

ClosetCHer,

I don't have an answer for the increase in shadowing you're experiencing, but it does appear to fit the pattern of a reduction in the frequency and severity of CH while on this regimen... 

As far as I'm concerned, a shadow is still a headache and I shot my shadows with oxygen therapy at flow rates that support hyperventilation.  It worked... 

Regarding increasing the dose of vitamin D3, I know a few folks including my daughter who were prescribed as much as 50,000I.U. vitamin D3 twice a week PLUS 5,000I.U. a day for unrelated conditions. 

Being fat soluble with a half-live of 27 days, the metabolite of vitamin D3 stays in our systems for a good while so I'm not concerned if I miss a daily dose.

Again, in keeping with the standard disclaimer, I'm not a doctor and the material covered in this post is for information purposes only.  Please see your PCP or neurologist to discuss vitamin D3 dosing over that listed on the label. 

Just be prepared for push-back as not all physicians are up on the latest dosing recommendations for vitamin D3 deficiencies.  They may think 2000I.U. vitamin D3/day is a "High" dose.

See Reply #73 dated Mar 9th on page 3 of this thread for a download copy of the pdf article by Dr Peter J Lewis, titled: "Vitamin D deficiency: more on diagnosis and management."  You may need to have a copy of this article handy if your physician gives you one of those YGBSM looks.

Please keep us posted...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by wimsey1 on Apr 6th, 2011 at 8:10am
Hey, Batch, do you have enough data yet to determine D3 dose ranges? I know 10k is the start. I'm up to 12k. You mentioned your daughter at 50k. Do you think there might be an effective range between the two? I'm going to up again today another 2k putting me at 14k/day. Still doing the fish oil as well. God bless! lance

Title: Re: 123 Days PF And I Think I know Why
Post by ClosetCHer on Apr 6th, 2011 at 10:36am
Batch,
Thanks for the help and the article. I'll keep my dosage of D3 between 10,000 and 15,000 IU for the next couple of weeks and note any positive or negative side effects. Like I said I'm working on the O2 situation which I hope to have resolved by the beginning of May. The problem with O2 is that I travel for work (2-3 weeks a month) and obviously can't take an 02 tank with me when the travel requires flying. I'll keep monitoring my cycle, reaction to the regime, and update the thread with my status.

Title: Re: 123 Days PF And I Think I know Why
Post by primetime on Apr 6th, 2011 at 11:09am
Thanks Batch....

I grabbed the wrong bottle of the shelf, my Vitamin D caps are only 1000 IUs, so I guess I'll have to pop a bunch of those. LOL

I remembered the specific supplements but not the amounts, so for the first couple of days I haven't been up to the therapeutic levels yet.

I'll adjust my amounts today and follow up over the weekend.

Title: Re: 123 Days PF And I Think I know Why
Post by Nants on Apr 6th, 2011 at 4:01pm
Batch, 

Please include my husband's experience as well... I posted this on the other site on 03/24:

D3 UPDATE!
After posting my last post, THAT night hubby had a mild headache but was able to sleep through it!  Yesterday some shadowing and "strange feelings/pains" BUT NO HEADACHE!!!  Two nights in a row with no Imitrex!  First "headache free day" he has had since January! Don't know what to think!      His cycle last time lasted 2 months... We are getting down to the line with ~ 3 months this time so not sure if coming off cycle now.  But this is what he is taking.

6,000 mg of fish oil - already been taking for triglycerides
15,000 IU of D3 - for a week now
300 mg of verapamil twice a day
300 mg of lithium twice a day

*** Past 3 /4 days he has tried taking between 5-10 IU of D3 during the day and then the rest at night.

He takes the fish oil, D3 and 2nd verap/lithium at dinner.

I know we aren't out of the woods yet but something is happening!  Just thought I would drop a quick update!


4/6 --  He stopped the Lithium a week ago.  As of today he has not had a headache!  Still has the shadows and mild pains but nothing full fledged!   :D

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 6th, 2011 at 7:04pm
Lance, ClosetCHer,

From the studies and articles I've read and data collected so far it appears the maintenance dosage for vitamin D3 is between 2,000I.U. and 5,000I.U.   I tend to agree with Dr Peter Lewis, MD from down under that 5,000I.U. of vitamin D3 is a good maintenance dose and that 10,000I.U. is a reasonable therapeutic dose with no reports of toxicity as long as there is sufficient calcium supplements taken at the same time.

From the data collected from CH'ers who are using this regimen, it appears that most of them are responding to the 10,000I.U. dose of vitamin D3 with measurable relief by 16 to 24 hours and significant relief by 40 to 48 hours with the most significant area of relief reported being a PF night's sleep.

Increasing the vitamin D3 dose above 10,000I.U. to improve the CH response has us in uncharted waters at this point.  There's just not enough data to support higher dosing rates one way or the other to improve the CH response. 

Granted there are physicians prescribing vitamin D3 as high as two doses of 50,000I.U. a week without any adverse reactions for other conditions.  However, this is usually done under controlled conditions with blood tests for the vitamin D3 metabolite, 25(OH)D3 and calcium to make sure the calcium supplements are sufficient to maintain proper levels.

If you think the full regimen of Omega 3 Fish Oil, vitamin D3, and the calcium citrate tablets with vitamin D, magnesium, and zinc is helping your CH and you want to increase the vitamin D3 dosage to improve the response, the best course of action would be to see your physician and ask for the 25(OH)D3 blood test.  The Vitamin D Council recommends that optimal health is supported by blood levels of 50-80 ng/mL (125-200nmol/L) as identified in a 25(OH)D3 vitamin D blood test.   Get this test along with a regular blood electrolyte test to make sure your calcium level is ok then repeat these tests after a month of higher vitamin D3 dosing.

If your initial vitamin D3 blood test for 25(OH)D3 shows you in the normal range of 50-80 ng/mL (125-200nmol/L), increasing the vitamin D3 dosage may not be necessary as your problem may be a low systemic pH.  In that case I would add another calcium citrate tablet to the basic regimen and start drinking homemade lemonade a couple times a day.  I've found that Baja Bob's sugar free Margarita mix works effectively as it has additional citric acid.

Hope this helps.

Take care,

V/R, Batch


Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 7th, 2011 at 1:39am
Hey Nants,

Thanks for the update with more positive results...  It's all adding up! 

Make sure your husband takes a couple of the calcium citrate tablets formulated with vitamin D3, magnesium and zinc along with the 10,000I.U. vitamin D3 softgels. 

This is important not only as a part of the regimen for CH, but also because the body processes calcium more rapidly with vitamin D3 so you need to supplement with calcium to prevent hypocalcaemia and to keep the blood electrolytes in balance.   I take mine with a glass of orange juice.

The Vitamin D Council reports that doses of 5,000 IU per day from all sources (sun, diet and supplements) are safe for most healthy people and that there are no reports of toxicity up to 10,000 IU per day. But the Council also warns that without calcium and magnesium in sufficient quantities, vitamin D supplementation will withdraw calcium from the bone...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Apr 7th, 2011 at 6:47am
Hi Batch

I don't take calcium supplement, because vitamin-D increases the calcium uptake from the food. Vitamin-D don't  withdraw calcium from the bone but adds calcium. Vitamin-D have some co-factors needed to work proberly, it's:
Magnesium, Vitamin-K2, Zink and Boron.

Regards
Niels

Title: Re: 123 Days PF And I Think I know Why
Post by primetime on Apr 7th, 2011 at 11:53am
A quick update....

I've been in a cycle since late summer, by far my longest and worst ever. I started on the regimen on Monday but I was a little bit low on the Vitamin D and Omega 3 for the first 2 days, I bumped up the amounts yesterday.

I've been woken up out of sound sleep with a cluster for the last 10 days at exactly 6:34 am.....EXCEPT FOR TODAY!!!

I hope this is a sign of things to come, I actually slept from 2am-7:30am for the 1st time in the last 6 months or so.

Now that I'm up to the correct levels, I'm hoping to see more results but I'll take the baby step.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 7th, 2011 at 3:37pm
Hey Primetime,

Thanks for the update...  I hope the pattern improves now that you're up to therapeutic dosing levels of vitamin D3

Niels, you're quite correct, vitamin D3 increases calcium absorption in the gut and serum so will help add calcium to bone matter.  I also agree the vitamin D3 co-factors are important as well and that's why I take the calcium citrate formulated with vitamin D3, magnesium and zinc...  That's why NIH recommends taking calcium supplements with vitamin D3 to improve bone mass and prevent osteoporosis. 

The Institute of Medicine also lists the Dietary Reference Intakes for Calcium and Vitamin D3 at 1000mg./day for men and 1200mg./day for women (1300mg./day if lactating) while taking 4000I.U./day vitamin D3.

The problem pointed out by the Vitamin D3 Council occurs with the higher therapeutic doses of vitamin D3 and minimal intake of calcium from all sources.  They agree vitamin D3 increases calcium absorption in the gut and that this leads to higher serum levels of calcium for bone development, but they also opine that in the absence of the needed calcium intake from food and supplements the opposite can occur.

If you read through the studies on vitamin D3 from deficiencies to mega-dose regiments ≥100,000I.U./week, there appears to be a pattern that too much or too little vitamin D3 can lead to osteoporosis.

As an example, one such study done in Australia where women ≥ 70 years of age were given a single dose of 500,000I.U. during the Fall through Winter time and a control group of women in the same age group were given a placebo.

The women taking the mega-dose of vitamin D3 suffered 31% more falls and 26% more bone fractures than women in the control group taking the placebo.  While one might be tempted to assume from these results too much vitamin D3 leads to osteoporosis, there may be other explanations for the increase in bone fractures...

While vitamin D3 dosing at this level has little to do with how we're trying to reduce the frequency and severity of our CH with the present regimen, the results of this study beg more questions than answers to the question is a lot more vitamin D3 better...  For example, the increase in falls could be due to vitamin D3 (cholecalciferol) intoxication.  The increase in falls could also be due to an increase in physical activity made possible by the vitamin D3 or a combination of both.  In short, this study leaves me with more questions than answers...

In closing there are two things to take away from this discussion as I see it, (1) we all need at least 1000mg. to 1200mg. of calcium from all sources a day.  (2) We also need to be critical when looking at the results and conclusions of clinical studies as it is easy to find similar studies arriving at different and sometimes opposing conclusions...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by primetime on Apr 8th, 2011 at 10:30am
Starting day 5 and things are looking up.

I actually got 7 hours of consecutive sleep last night and zero...that's right ZERO hits in the last 24 hours.

Batch...you're pretty much hero right now!!!  ;D

Title: Re: 123 Days PF And I Think I know Why
Post by Powermonkey on Apr 8th, 2011 at 1:48pm
Ok, I've been taking 10,000 IU of D3 daily for over a month now.  I built up the courage over spring break to stop taking it twice, for two days each time to find out what would happen.  Both times that I stopped taking it, I started shadowing more heavily by evening of the first day, and I took a full attack at night on the second day the second time I stopped taking the D3.  Both times the pain went away the day after when I resumed taking the D3.

Seems to me that in my case - D3 definitely is working.

Has anyone had NO success so far with it?  I think it would be interesting to hear about the cases that do not, since this seems to be working for so many people in this thread.

A comparison of medications, symptoms, etc taken by those that it does work for, and those that it does not work for could be useful for determining if there may be similarities between those that D3 helps and those that it does not.

Title: Re: 123 Days PF And I Think I know Why
Post by wishbone on Apr 8th, 2011 at 2:03pm
The jury is still out for me but I have only been taking the D3 for about 5 days now.  The 3rd day there seemed to be improvement, but yesterday was horrible back to HA during day every 3 hrs and then last night every 2 hours.  One thing of note however, is once in cycle the changes in barometric pressure, high humidity definitely cause me to have more hits and presently our weather is crazy with changes so this could be reason for not having the same positive affects on me as for many, because the 3rd day I thought it was really working (and it may be) because I went 7 hrs with not a hit.  Also of note, except for today, when hit I have been able to abort with O2 in a much shorter period of time.  Unfortunately today am in a big shadow period.

Wishbone

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 8th, 2011 at 4:06pm
Wishbone,

You're not alone.  I have at least one other heavy hitter having a similar response to this regimen.

Try shooting the shadows with oxygen therapy using the modified forced vital capacity tidal volume breathing technique we discussed in the call.  If you're able to blow away your shadows with this technique it may mean your arterial pH levels are too low.

Have you started drinking an 8 oz glass of lemonade with lunch and dinner as we discussed in the call?  This can help as there are two parts to the complete regimen.  The Omega 3 Fish Oil and vitamin D3 act as an anti-inflammatory to combat possible neurogenic inflammation in and around the trigeminal nerve.  The calcium citrate tablets containing magnesium and zinc act as co-factors to improve the effectiveness of the vitamin D3 and when taken with fruit juices high in citric acid act as a stomach acid buffer so should help elevate a low arterial pH. 

If the arterial pH is too low it tends to stimulate vasodilation and that can lead to an increase in the frequency and severity of your CH.  Elevating the arterial pH to the upper end of the normal range should act as a vasoconstrictor so would lower the frequency and intensity of your CH.

I've sent you a pH data collection spreadsheet so you can start tracking your saliva pH as an analog to arterial pH.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by wishbone on Apr 8th, 2011 at 4:15pm
Batch the O2 does not knock out the shadows, maybe temper them some, but still there. I have not today had the lemonade (ran out) but before all this week have been drinking about a quart a day.  One note however, I did not drink with meals just drank it during the day.

At this point I really do think my ph probably low but I also think the crazy weather has the demon happy.  Up until today I was getting better. Weather is suppose to break today so with more lemonade maybe the demon will rest a bit.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 8th, 2011 at 10:58pm
Wishbone,

Copy all...  and sounds like a plan (SLAP) with the lemonade.  I had the best response drinking it with lunch and dinner...  You might try taking the calcium citrate tablets right before lunch along with a glass of lemonade.  That will ensure a good buffering action.

You also may have better luck shooting shadows when the new InGage™ regulator comes in...

We'll figure out one way or another what's preventing this regimen from working properly for you.

Take care and hang in there. 

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by sandie99 on Apr 9th, 2011 at 9:10am
I just read through the whole thread. Very interesting read! Thanks for starting this, Batch. :)

Now, I've been planning to get Omega3 for me for a while. This gives me one excellent reason to do some more research on the brands available in here. I do take lots of vitamins already, some of them contain vitamin D. I need to look that up as well.

I suspect that I will find different doses in here. Usually our doses are much, much smaller, but let's see about that.

PF days to all,
Sanna

Title: Re: 123 Days PF And I Think I know Why
Post by oxyrunner on Apr 10th, 2011 at 4:37pm
I know I am still mid cycle because I have a very dodgey left eye and eyebrow every morning when I wake up!! Whether out of stupidity or curiosity I wanted to see what would happen if I stopped taking the D3 regime - I only missed the supplements for 1 day and sure enough the shadows started up again!! Straight back on the regime ( dont need a full blown CH to prove a point )  24 hrs later no more shadows.
Oh yes ~ I also passed the beer test :D, gonna try the vodka test next  ;D ;D

Title: Re: 123 Days PF And I Think I know Why
Post by Amanda07 on Apr 10th, 2011 at 8:25pm
OK so I'm almost too scared to say anything in case it hears me...

BUT...

I'm up to day 3 PF so far! 3000mg of Omega 3 and only 1000 IU of D3 a day and my shadows have virtually disappeared. The only thing I have noticed is that if I stay up too late at night, outside of my regular routine (which I have done a few nights this weekend), I get a niggle of pain from shadows...but I'm hoping that as it builds up in my system that might stop being a problem.

But OMG I feel a million times better and like this NATURAL path a LOT better then the anti depressants my neuro wanted to try me on next...

My question is for those on verapamil as well as this system - have you stopped your verapamil? I'm wondering when I should taper mine down and see what happens...

Title: Re: 123 Days PF And I Think I know Why
Post by River_Rat on Apr 11th, 2011 at 10:10am
I don't even know what to say but suppose I should say something, I started the D3 10K and 3600mg Fish oil  also talking 480mg verap and all was well for awhile (just starting my cycle) then I tapered off the verap and got slammed again so I started the verap again still not getting better, I upped my dose to 960mg verap and maybe just a little better but still getting hit hard, I then added the Calcium Citrate and they got worse I stayed on this cocktail for a few days but I swear the calcium made it worse for me so I stopped taking the calcium and just stayed with the 10K the 3600mg and the 960 verap it doesn't seem to be helping me anymore (maybe mid cycle), so 2 days ago I just stopped taking the verap because I didn't feel like it was helping me anyway, had a pretty rough night last night, hell I don't know I can't even type right now, I'm just taking trex shots to kill these things right now, I was running low and last night I was dancing with a 9ish but was trying to save my last shot (I usually only inject about 2.5 ml) I suffered through my 9 then shortly after that got hit again, it was climbing and at about 7 I injected just 1ml and it killed it. I think my plan now is to stay on the D3 10K and 3600 mg Fish oil, then just take the trex small dose as needed to kill the beast. I'm in hell................I am quite sure the next post will say something about 02, not going there again, has never worked for me NEVER, I've used it every possible way. I'm trying kudzu again. I've had 30 years of this shit and you would think they could find something, I'm guessing that I am at least half way through my cycle so I just need to hold on, there has never been a ryme or reason for these things with me, once I thought a chiropractor fixed them, once I thought schrooms worked, once I thought Kudzu worked, once I thought I hammered them so hard and so often with trex they just went away, who really knows. Sorry for the rant.

PFDN................Norm

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 11th, 2011 at 3:01pm
Norm,

Sorry you're having a rough time.  What brand of calcium citrate were you taking?  Some formulations contain calcium carbonate that makes it less effective as a buffer and the calcium carbonate can easily cause a GI disturbance unless taken with meals. 

In addition, the Kirkland brand of calcium citrate most of us are using also contains magnesium and zinc.  All three of these minerals are an important part of the regimen as they act as co-factors to improve the efficacy of the vitamin D3 therapy.

I understand you've tried oxygen therapy several time without any luck, but at what flow rate? 

If you've tried oxygen therapy at ≥25 liters/minute early in an attack using one of the O2PTIMASK™ kits with a 3 liter reservoir bag without getting an abort, you may have one or more comorbid conditions that override the oxygen therapy and making the anti-inflammatory regimen less effective... 

You're not alone on this count.  There are three other heavy hitters having similar problems with the anti-inflammatory regimen.  However, all three are successfully aborting their CH with oxygen therapy at flow rates that support hyperventilation.  They think the anti-inflammatory regimen has has helped shorten their abort times.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by River_Rat on Apr 11th, 2011 at 7:32pm
Hi Batch, I was a bit grumpy this morning when I made my last post, and for that I'm sorry. Anyway I looked all over and couldn't find the Kirkland brand and we do not have a costco here. I did end up at a nutrition store that had just about everything, I had my Blackberry with me and showed them the picture of the bottle they looked it up and found it so we compared the ingredients and we found the exact same thing from NOW, I/we did figure out the difference between the citrate and carbonate, this brand also has the same I'U of D3, Magnesium and zinc all the same, it could just be a coincidence that they got worse after taking the Calcium who knows. If there is one thing that I have figured out through the years for me at least is I never really know what actually works. I am still taking the D3 and the fish oil and who really knows maybe my head would be worse without it. The other thing that I know for sure is Imitrex has always killed them, sometimes I will rebound and I will shadow a lot from it but I only have about a month to go hopefully.  This might sound silly to you but the 02 thing is such a big hassle, I'm not opposed to trying it again sometime but last time I had that huge tank, hoses the newest greatest mask, bag & etc, it wasn't very portable and to top it off it didn't work and at that time 2009 I had all the new stuff. I am about half way through my cycle. As much as I don't want to suffer from the pain I think I would rather just take the trex this time around. I'll keep reading and I'll stay strong. I thank God for you and this site.

OH!! One more thing, my CH hit hard and fast but the longest one I have had this go around is about 30 min and that's a good thing, could it be the D3/Omega3  ;)

PFDN.................Norm

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Apr 12th, 2011 at 3:24am
Hi

It took me 3 months before I was pain free, with 5000 IU vitamin-D3 and 500 mg magnesium. So it can take some time to work.  ;)

Title: Re: 123 Days PF And I Think I know Why
Post by ICY on Apr 13th, 2011 at 4:56am
Just a quick update of where I am

Been taking 3000mg Omega3 and 10000iu D3 for a few weeks now, my headaches have just much less severe although I do still get them 4-5 per day, I seem to have a low level irritating headaches most of the day between the heavier pains, this seems to have happened since January however now the in between headaches seem to have gotten a bit stronger and the more severe headaches seem to have eased a couple of levels, I am just about to start verapamil at a rate of 120mg per day waiting for a prescription for Sumatripan injections, not on O2 yet, will be getting that sorted very soon if the verapamil and sumatripan dont work for me.

So my conclusion is that the D3 and Omega3 have had an impact in reducing the severity of my big hits, I will update once the Verapamil starts getting into my system.

Title: Re: 123 Days PF And I Think I know Why
Post by Radar63 on Apr 13th, 2011 at 2:44pm
Hi
Well this is my first post.  Have been a cluster head for over 10 years now.  I like many have spent absolutely thousands of pounds on various different treatments.  Through it all O2 was the only abortive that works for me.  No preventative has ever worked, tried Verap, Proponolol just going back to Neuro for next thing to try.

Finally as my condition has evolved (used to have one 6 week episode in June /July, now have been in a set of beast visits since early feb.) I have now found something that works!  Last week I was having attacks every 50 mins through the night about Kip 5 each time although some were Kip 7.  O2 always gets shot of mine in a max of 10 mins, sometimes literally in seconds.

Joined here a week ago, read Batch's advice and am taking the fish oil and the sodium citrate tablets, waiting on the vit D.  However since I started have gone 3 nights ago to 4 attacks, 2 nights ago to 2 attacks, and last night 1 attack.  Now as a maths teacher I understand sequences, but this is the best ever!

Am hoping against hope that I will be another success story.  Got some Ph strips, measured  my mid afternoon level, it was 6.75, then just before evening meal had a shadow, measured it then and was 6.  Downed a supermarket own brand version of Red Bull (20% of the price) and felt a lot better.  Kind of hoping that the regimen will eventually help with the shadows and day time Kip 3/4 attacks.

Thank you Batch, fingers crossed!!!!!!       

Title: Re: 123 Days PF And I Think I know Why
Post by primetime on Apr 13th, 2011 at 2:55pm
I think I've had a major breakthrough.

It's been exactly a week since I started on "therapeutic" levels of everything. I'm taking the following vitamins currently:

- 2 calcium citrate tabs with Magnesium, Zinc, B6 and D
- 3400 mg's Omega-3
- approx. 7500 IU's vitamin D (between the D3 supplement, multivitamin and calcium citrate tabs)

Since last Wednesday, I've had some spotty shadows and only 1 hit worth mentioning. Also, I've slept over 6 hours consecutively a night for 7 nights in a row.

Obviously, as with everyone on the board, the cluster experience is very individualized, same thing with treatments and their efficacy. I have to say that for me personally, this vitamin regimen has been nothing short of a miracle. For the last 7 days I've felt alive again and I haven't felt this way in months.

Title: Re: 123 Days PF And I Think I know Why
Post by MattyAA on Apr 14th, 2011 at 6:01am
Hey I got question, how do you intake D3? it it drops or liquid tincture? I seen some D3 here with 15.000 U.I and only one is tincture but it is with Benzyl alcohol as helper regeant or however you call it.


In Poland brand name is Devikap if you could look up on net and tell me if it is safe, alcohol part made me a bit worried, as despite me being episodic, I still am afraid to drink due to my university as I don't want to piss off headache and get it now that I really cannot afford any lost time.

Thank you in advance.

Title: Re: 123 Days PF And I Think I know Why
Post by primetime on Apr 14th, 2011 at 1:11pm
My vitamin D3 is coming from caplets.

Title: Re: 123 Days PF And I Think I know Why
Post by MattyAA on Apr 14th, 2011 at 5:29pm
Can you give me brand name?

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 14th, 2011 at 11:26pm
Radar, Primetime,

Great news.  Thanks for your updates.

Matty,  vitamin D3 (cholecalciferol) can come as a liquid, I used to get it under the brand name Drisdol and I took it with an eyedropper, liquid softgel capsules, or as a lower dose solid mixed with other vitamins or minerals.

I looked up and translated devikap… Devikap (Vitamin D3), is a liquid form of cholecalciferol  (15,000 IU / ml), 10 ml.  This liquid form of vitamin D3 should work just fine.  I would start out at a half ml (0.5ml.)/day.

You may find vitamin D3 in the liquid softgel capsules are easier to take.  Nature Made sells it's products in Europe so you may be able to order vitamin D3 over the Internet. The same with Nature's Bounty.  Both carry the 5,000I.U. vitamin D3 in liquid softgel form.  If no joy on these two brands, search the Internet for "cholecalciferol" or "cholecalciferolum" and "5,000I.U. liquid softgel capsules."

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by ClosetCHer on Apr 15th, 2011 at 11:12am
Batch/All,
Today marks two weeks that I've been on the D3/Omega 3 regime so I'll give an update. I've been taking 10,000 IU D3, 3,000 mg Omega 3, and 1 Calcium/Zinc/Magnesium combo. Just to note, I don't take any other medications or vitamins.

For the first two days, I still had 3 attacks each day in which 1 of those attacks on each day turned into a CH (K6-7). The other attacks were either heavy shadows or K1-2s.

From the third day until now, I have been PF (minus a trigger CH one night because I sat around chlorine too long. My fault). I have heavy shadows some days and other days I don't have any at all. On a few occasions I've had very close calls where the shadow was just about to change into a CH but went away. I've noticed that the shadows are very receptive to abortive treatments considering how far I am into the cycle. I don't have 02 right now so my main abortives are caffeine, exercise, and the rubbing of my eyes. Any type of exercise that raises my heart rate significantly for 4 minutes or more has eliminated any shadow or possible CH that I have tried it on. This usually never happens mid cycle and I think its a result of this vitamin regiment.

Other Clusterheads have taken a day or two off to see if the CHs return full blast. Call me weak (or smart), but I will not be doing that because I feel so great right now. I will continue to take this regiment until my cycle is over (whenever that is!) and will start up again when the Beast returns. Thanks Batch and everyone else who has posted!

Title: Re: 123 Days PF And I Think I know Why
Post by primetime on Apr 15th, 2011 at 2:15pm
Matty AA....

I'm just using generic, grocery store brand, vitamin D3 liquid capsules. Same for the omega-3 and calcium citrate.

All the effectiveness of the name brand, without the cost.

Title: Re: 123 Days PF And I Think I know Why
Post by Dreamofire on Apr 15th, 2011 at 8:31pm
Its been a few weeks now and I thought that I would report my personal findings. 

I have been taking 10,000I.U. D3 and 2000 mg Omega 3 with the calcium citrate +D3 with lemonade the (Batch Formula) now for a little over 2 weeks.  The beginning results were skewed because I was on a fairly lengthy stretch of high dose prednisone and depakote.  Prednisone previously had been stopping 90% of my attacks.  My goal was to try this in lieu of my depakote as I came off the Pred. My first three days of replacing the depakote with the (Batch Formula) was fantastic as I experienced 3 full pain free days.  Unfortunately as I continued to tapper off of the prednisone it was short lived and my percentage of hits have steadily increased as I decreased the prednisone dosage.  Two days ago I stopped the prednisone and my attacks are back to 100% of pretreatment.

Unfortunately I don't have the option of giving this anymore time on its own to work.  I have to provide for a family and I'm the sole income I have to be able to work.  So I've made my deal with the devil  [smiley=deal2.gif]and I'm on the prednisone again for month number 4.

Really cool though that a lot of people are getting some results with this Not sure why its not effective for me.  This cycle does seem to be more of an ass kicker than normal. Who knows maybe it will begin to work in the future.  I going to continue to take the Batch formula because I need the calcium and D3 with being on the steroids. So when this round of steroids comes down I shall re-evaluate.

PF Days to all...
Sean

Title: Re: 123 Days PF And I Think I know Why
Post by MattyAA on Apr 15th, 2011 at 9:02pm
Thanks Batch a lot! Will look it up and see, though Poland put D3 on prescriptions I heard last time I was to local pharmacy, so I will see if I can order it or not.

Thanks a lot for great piece of information Batch, you are great!

Matty

P.S Oh I would forgot to ask.

Lemonade you mentioned, will just squeezing lots of fresh lemons then adding few spoons of sugar then mixing it works? Or do you have some improved perhaps balanced ingridient to ingridient formula?

Though prolly I will make myself sound like an idiot :P Sorry if I ask for obvious things, but hey perhaps your lemonade is better than what I used to do  ;D

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 16th, 2011 at 12:25pm
Hey Matty,

Good question.  I make my own lemonade and sweeten it with Splenda™ an artificial sweetener to cut down on the carbohydrates.  I use a ratio of one part lemon juice to 4 or 5 parts water and one part Splenda™.  If you don't have Splenda you can use another sweetener or sugar then adjust to taste.

The following link has a great recipe for lemonade:

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It's important to understand the rationale for drinking lemonade with the calcium citrate supplements that also contain magnesium and zinc is to elevate arterial pH.   

If the arterial pH is below the normal range, this condition tends to stimulate vasodilation and that makes the CH triggering mechanism more effective so we tend to have a higher frequency of CH and they tend to be more severe.

An arterial pH at or slightly above the normal range of 7.35 to 7.45 tends to stimulate the vasoconstriction we need to help slow down and possibly prevent the onset of a CH.

The combination of citric acid from the lemon juice and calcium citrate forms a chemical buffer that will elevate the stomach's gastric juices from a pH of 1.0 - 2.0 up to a pH of 3.9 and stabilize it at that level for 5 to 6 hours. 

I've found that taking the calcium citrate tablets washed down with lemonade or orange juice in the morning, then drinking a glass of lemonade with lunch and another with dinner has the best results.

If you take this concept one step further, you can make a few simple changes to your diet during a CH cycle that can also help reduce the frequency, severity and duration of your CH.

In general you want to eat more alkaline forming food types and cut back on acid forming foods.  The simple formula is to cut back on red meat, (eat more fish and chicken), and eat more veggies.  Staying away from foods containing gluten, i.e., bread and peanuts may also help as these two food types have a habit of stimulating inflammation throughout the body and brain…

Barry_T_Coles posted the following link that provides an excellent acid-alkaline food list.

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Hope this helps.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by MattyAA on Apr 16th, 2011 at 2:13pm
Wow thanks a lot, off to shop to buy lemons and then back to do it, also will buy fresh cod and some veggies as you suggested, mhm... roasted chicken is on my mind too, I am just a bit worried if spices for roasted chicken like parika, powdered veggies and so on will fix a headache for me or not... hmmm

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 16th, 2011 at 10:38pm
Matty,

I wouldn't worry about spices...  I used a liberal dusting of "Texas Gun Powder" (ground smoked jalapeño pepper, a.k.a. chipotle) [smiley=cowboy.gif] and lots of garlic on my Peruvian style roasted chicken when I was in cycle and had no problems...  but then I go through a pound of fresh jalapeño peppers a week... some puréed fresh with garlic as a dip for the chicken and the rest stuffed with sharp cheddar cheese as "poppers."    [smiley=JAW_DROP.gif] Go figure.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Apr 18th, 2011 at 1:29pm
Was talking with a friend of mine two days ago. She's been on anti-depressants for quite a few years and noticed a decline in their effectiveness.  Her M.D. put her on a therapeutic dose of vitamin D3 at 100,000 IU per week.  After several weeks she noticed a considerable improvement. 
Interesting thing is that after three months at this dose her D3 levels were no higher than at the low end of the normal range.
It does seem to take some time to for some people to get the levels up to normal.
-Gary

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 18th, 2011 at 1:51pm
Gary,

Ask her if her doctor also prescribed supplemental calcium...  The Vitamin D Council recommends supplemental calcium be taken when treating vitamin D deficiency.  Without the calcium supplements, high doses of vitamin D3 can actually start removing calcium from bones...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Glassman on Apr 18th, 2011 at 5:01pm
Thanks Batch,
Yes, I remembered your earlier post about that. I did ask and she said that she has been taking Calcium all along.
-Cheers!

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Apr 19th, 2011 at 4:26pm
Hi,

Have just joined this site, and have just read (most of) this thread. One of my best friends is involved with a company in the UK that lead the production of Omega3, and they make a very good product. When he gets back from the States next week, I'm going to be hitting him up for a few bottles!

I'm a chronic sufferer, so will know pretty quickly if this regime is working or not. It sounds really interesting. Thanks for posting, will let you know I discover.

xx Renée

Title: Re: 123 Days PF And I Think I know Why
Post by ClosetCHer on Apr 19th, 2011 at 6:02pm
ReneeM,
Glad that you found us! As you read in the thread, the D3/Omega 3 has worked in various ways for me and many other Ch sufferers. From my experience, I would recommend that you try the regime for at least a week or two before making a verdict. I have noticed more improvements week after week and I worry that some people expect it to work overnight. Just my opinion! Good luck and I hope that it works for you!

Title: Re: 123 Days PF And I Think I know Why
Post by Heather Elise on Apr 19th, 2011 at 6:24pm
Hi,
I have been reading everything I can on this site and trying everything too...... SO happy that I found it!!! I'm an unemployed welder and only had 9 imitrex pills so I have really been hating life, been in cycle now for a month and a half. Started the D3 cocktail, 4 days ago and I'm feeling much better. I hope everyone has pfd. Thanks, for all the info.
Heather


Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 19th, 2011 at 11:12pm
Hey Heather,

Thanks for the update on your response to this regimen...  It never hurts to hear from someone capable of pouring heavy metal rods in a very bright arc lite...

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Apr 20th, 2011 at 5:35am
Hi again,

Right, I've had a chance to read more of this wonderful and amazing thread! Thank you, each and everyone who has posted and tired this regimen, and especially Batch. Thank you for giving me hope.

I'm not an expert on Omega3, but I have a very good friend who pretty much is. He's involved with a company that makes it. He's in the States at the moment (I'm in the UK). He'll be back in a couple weeks, and can answer any questions anyone has. I know he takes it twice a day, and he takes quite a lot. He says it increases his sex drive, among other things. He's 66, although you wouldn't know it, you'd think he was 48. Also, taking it in two smaller doses might help with the upset stomachs some people mentioned.

Interesting the comments about sunlight and Vitamin D. In England, the winters are very dark, and the days VERY short. My clusters are always at their worse Nov-Feb, and this year they were horrendous. I put it down to Topiramate not working, but it could have been lack of sun, and lack of Vitamin D. My mood droped, I was tired ALL THE TIME. I started taking Vitamin D a few months ago, which helped with my energy, but on its own didn't really make a change to my clusters.

I don't have the bottle in front of me to know if it was D3, or just D, not sure if there is a difference???? Or how much the difference is.

Anyway, I'm heading to the chemist now to buy some Omega3 and Vitamin D3.

My clusters are Chronic at the moment. So far this year, bad clusters have been a max of 9 days a part, more often 4-5 days a part. Today is day 10 since my last bad cluster. So I'm expecting one at any moment. I've had a few minor ones recently, the demon is flexing his muscles, getting ready. So maybe I can kill him before he gets a chance. That would be a nice trick.

I have a spreadsheet that I've kept since 1 Jan 2010. It tracks every headache, ice-picks, shadows, cluster and migraine, along with every medication I've taken, abortive, sleep patterns etc, etc, etc. All of that is then graphed and plotted over time. I will add this regimen to the charts and see what happens. Would be nice to flatline the demon.

Two months ago I had no hope and was planning my end. I have hope now. Thank you.

Renée

Title: Re: 123 Days PF And I Think I know Why
Post by Radar63 on Apr 20th, 2011 at 4:04pm
Hi all

Started the regimen a week or so ago, it cut back my attacks night after night, am now about a week into PF nights.  Shadows largely stopped at the weekend, but I know I am still in a period of attacks because yesterday morning I had to collect my daughter early and didnt take my morning dose until 10 when I got breakfast with her.  I had a shadow just as I was preparing the meal.
I feel so much more alive than I have done for so long, I feel so much more energy.
Have some really good Omega 3 oil (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE) am taking about 4000 mg a day with the combination horse softgels and D3.
Thank you so much to Batch for his advice and guidance I just so hope this works for others as well.  Many PF days to you all.
Ian ;D

Title: Re: 123 Days PF And I Think I know Why
Post by Roxi on Apr 20th, 2011 at 6:09pm
In a cluster cycle now.   It has been 3 1/2 years.  Longest I have every went in past 30 years.  Though I was done with it.  Just some suggestions on treatment.  Of course you have probably all tried predisone.  It helps me at the start of cycle.  I stay on Verapramil all the time.  What really helps me is Keppra.  It is an antiseizure medication.   Dont have any side effects from it.   It is in generic now so not to expensive.  500 mg AM and PM.  If you can get your doctor or neurologist to prescribe it, it is really worth trying.  My neurologist started prescribing it about 5 years ago to her cluster patients, acute and chronic forms and has gotten great feedback from it.

Title: Re: 123 Days PF And I Think I know Why
Post by wishbone on Apr 20th, 2011 at 7:58pm
Well I thought I was going to be able to report something really positive until last night and I got hit with a 9K that I could not abort with O2 and had to resort to zomig and O2 which did abort finally.  Up until then my attacks (although still not less frequently) had been reduced to 4-5K and I was able to abort rather quickly with O2.  Our weather here in Birmingham, AL has been crazy (tornados everywhere around) and maybe the changes in barometric pressures had something to do with last night's hit.

I am keeping faith that this regime will work and still think it has been positive on reducing the level of hit.

Take care all and I pray this regime is working for most to provide some PF time, Wishbone.

Title: Re: 123 Days PF And I Think I know Why
Post by Mike NZ on Apr 21st, 2011 at 5:00am
I've been following this myself too (not just suggesting others try it).

For the last two weeks I've been taking 3000IU of vitamin D (plus getting plenty more from the sun here in NZ), 4500mg of fish oil, 266mg of magnesium, 133mg of calcium and 5mg of zinc (last 3 are combined in a tablet) each day.

Although I started reducing my verapamil at the same time I started this, down to 360mg from 480mg, I've continued to be CH free (33 days now after 11 months of CHs). I've had the number of ice pick headaches I get drop off to virtually nothing (1 a week?).

I'm now feeling pretty good, am looking to reduce my verapamil again and am no longer quite joined at the hip to my oxygen cylinder.

Whilst I can't put 100% of the credit on this method, it certainly seems to be helping.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 21st, 2011 at 8:36am
Hey Renée,

I like your style...  Flatlining the beast is clearly a goal we all share... And all of us who have suffered from CH for any length of time without benefit of a meaningful method of intervention have looked over the edge at one time or another...

What I find most amazing is that when you finally do come across something that works well enough to not only control the beast, but give you back a quality of life you didn't think possible with CH...  Everything changes for the better...  and you enjoy life so much more than ever... 

It's like having an Angel flying cover for you...  to assassinate the beast...  making all the fear and anxiety associated with the next CH a thing of the past...  And if the beast does manage an appearance...  no biggie... Just blow it away with oxygen therapy at flow rates that support hyperventilation.

As far as reports on the efficacy of this regimen go...  the numbers just keep getting better.  Ian, with your report, we're pushing 80% efficacy with no real side effects or adverse events reported.  That's a heck of a lot better than verapamil at 50% efficacy and all kinds of side effects!

I know we still have a few folks who also suffer from comorbid disorders that can prevent the full response so many others are experiencing so I'll continue to look for other possible solutions.

In the mean time for others thinking about trying this regimen for the first time... please discuss it with your PCP or neurologist...  I'm not a doctor...  or a snake oil salesman...  just another CH'er like you.

For those of you who find this regimen is making a difference, be sure to discuss it with your PCP or neurologist as well...  they might just learn something new...  and be better prepared to help the next CH'er who walks in to the office with a red eye, drooping eyelid and saline gush complaining about a screwdriver lodged behind the eye...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Apr 21st, 2011 at 8:53am
Batch,

Is someone keeping a record (a detailed record) of how many people are trying this regimen, what doses they are taking, how long for, how effective it has been, what other preventatives they are taking it with, success/faulure/PF days, etc.? You mention 80% success in your last post. Is that an accurate figure or a WAG? (wild arse guess).

Have an appointment with my GP on tuesday to get a higher prescrip of Vitamin D3 and see about Oxygen. She's really helpful, so the D3 shouldn't be a problem, not sure what she'll say about the Oxygen.

Renée

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 21st, 2011 at 11:32am
Renée,

"Pushing 80% efficacy" with this regimen is better than a SWAG...  The raw numbers for folks trying this regimen who have either posted here on CH.com or directly to me via PMs, Skype, or Email with positive results of either a significant reduction in the frequency and intensity of their CH or gone into a CH PF remission is 23 out of 29 or 79.3%...

The most common comment is PF sleep...  followed second by an uplift in energy...

I've not kept track of how closely folks are following the regimen I use, but it appears the vitamin D3 dosing is between 5,000 and 15,000 I.U.

Until we can get a formal, gold standard (randomized, crossover, double blind, placebo controlled) study funded, started, and completed with published results, all we're doing at this point is collate anecdotal information. 

Having said that, what's significant at this point even as an informal survey is the efficacy is far greater than what might be expected from the highest possible placebo effect, and that there have not been any adverse events reported...

That makes this is a very positive first step as it provides me with the kind of data I need to go out dialing for dollars to fund such a study.

I hope you had good luck with your doctor today.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by primetime on Apr 21st, 2011 at 2:21pm
Another update....

I settled in at 7000 IUs Vitamin D, 3400 mg's Omega-3 and 2 Calcium Citrate tablets (Magnesium and Zinc included). In the span of about 2 weeks, I had one hit worth mentioning and no shadows. This was down from 4-7 hits a day since last August.

Things changed on Tuesday. I woke up at 7am with a kip 5 and then fell right back into my usual pattern, 5 hits total. Same thing on Wednesday and I've had 3 hits today.

I'm on the last of my vitamin D and Omega 3, so I'll restock today but I think I'm going to increase my vitamin D to 10,000 IUs to see if can corral the beast again.

Cross your fingers for me because the pain free days were unbelievably awesome and I want them back!!

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Apr 25th, 2011 at 8:19am
I'm at 4,000mg Omega3 and 8,000 IU Vitamin D3, and am still getting attacks, albeit more mild than before. And shorter, probably half strength and half duration. Seeing my GP on Tuesday (tomorrow) to see about getting prescribed 10,000 IU Vitamin D3 as it is difficult to get over the counter without taking a handful of tablets each day. The strongest dose I can find is 1,000 IU tablets - yeah, 10 a day!

So, my hope now has a dent in it and my optimism is not is not so high. But will get on 10,000 IU and see how that goes after a few days. At least I'm chronic, so if this works, I'll know for sure before long.

Taking one day at a time at the moment.

Renée

Title: Re: 123 Days PF And I Think I know Why
Post by wishbone on Apr 25th, 2011 at 8:28am
As always confusion exists regarding the Demon.  I have been on the regime for about 3 1/2 weeks now and had been getting anywhere from 10-18 hits a day.  This past Monday night I got hit with a 9-10, so bad I could not abort as usual with O2 and resorted to a zomig nasal spray.  The HA broke after taking and continuing O2.  I only had 2-3 hits the next 3 days and then Fri, Sat & Sun no hits.

So here in the big confusion for me.  I am eposodic and my cycles usually run for 3 months.  This is the end of the third month, so now I have no idea if the regime worked or if my cycle is ending on its own.  Regardless if my PF days continue I am going to continue the regime but reduce the D3 down from 20,000 IU to 5,000 and take only 2 Calcium Nitrates.  I will continue with 3,600 mg of Fish Oil.

For those of you in doubt I would encourage you to try because everything about me medically, I am also in the only 2% or 5% that something does not work.  I state again, however the regime may have worked because 2 cycles ago my cycle lasted 6 months.  I also recognize that the Demon may have just taken Easter off and will attack again with vengeance, but with what I have been going through the 3 day respite is so enjoyable.

I wish all PF days and only pray this cycle truly is ending. 

Wishbone.

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Apr 26th, 2011 at 8:08am
I saw my GP this morning, in hopes she could prescribe a higher single dose of Vit D3. The highest I could find on the shelf was 1,000 IU tablets, and was getting fed up taking a handfull each day. But alas, she couldn't even prescribe that! The highest in her books was around 400 IU.

So, I did what I should've done to start with and turned to the Internet. I found this site, and placed and order: (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE)

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5,000 IU tablets, 180 each in a bottle for less than £10. They also have a US and Euro currancy site. So, problem solved.

I shall be fully on the regimen by the end of the week.

Lots of fingers crossed.

Renée

Title: Re: 123 Days PF And I Think I know Why
Post by Knuckles on Apr 27th, 2011 at 9:33am
Thank you! 

This has made a huge impact on me as well.  I've been using D3 and Omega 3's for almost a week and have fewer and less intense headaches than when I started.

In fact, I actually went all day yesterday without an attack. I did have a few minors through the night (when they are usually the worst).

Title: Re: 123 Days PF And I Think I know Why
Post by wimsey1 on Apr 28th, 2011 at 8:38am
Hey Batch, one of your heavy hitters reporting in...I've been on 10KIU's of D3, 3600 for Fish Oil, and 1000mgs Calcium daily for over a month. My reason for posting is this: at first, I was looking for the magic bullet that would end the daily hits. But I've changed my criteria, and I'm wondering about other chronics as well. Once I upped my verapamil to 560mg/day, and added this regime, I've noticed I'm back to 2-3 hits/day instead of 4-6 +nighttime hits, and abortable after 2-3 minutes of O2. This is so much better than just one month ago. Of course I'd rather have no pain, no interruptions, no hits...but something is working here and I'll keep it going. Seems to me pain free might not oughta be your only criteria for success...moderating hits for chronic at least is quite helpful as well. So again, thanks for all you do, Pete and keep the stats comin'! Blessings. lance

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 28th, 2011 at 9:00am
Knuckles,

That's great news.  Thanks for sharing it with us. 

There are two goals of this regimen, lowering inflammation and elevating arterial pH to the high end of the normal range.  As diet can affect arterial pH, switching to a more alkaline forming diet may help this regimen to be even more effective.

Barry_T_Coles commented on this thread with the following link to food types you can eat to help elevate systemic/arterial pH:

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Hope the suggested food types shown at this link help improve your response to this regimen.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Apr 28th, 2011 at 9:48am
Hey Lance,

Thanks for the update.  As a chronic type with heavy hitting cycles that caused my abort times with oxygen therapy to jump from 3 to 4 minutes up to 12 to 14 minutes, my initial motivation for using this regimen was to make my CH more manageable with oxygen therapy at flow rates that support hyperventilation, lower the abort times and cut down on the number of hits while sleeping.  Going PF was a total surprise.  I went from a consistent 4 hits a night to PF in 48 hours..

You do bring up another good point that I commented on in the thread on warfarin that may be worth repeating.  Essentially, there is no silver bullet...  Having said that, there appear to be a number of things we can do to make our CH more manageable if we take a more holistic approach.

The first is not to treat our CH in isolation.  In other words, it's becoming clear that diet can play a role.  A diet high in acid forming foods can bias our systemic/arterial pH to the lower end of the normal range and that may be all it takes to push us into a heavy hitting high cycle.

Accordingly, a change in diet to eat more alkaline forming food types listed in a link in my post above to Knuckles might be all it takes to make this regimen even more effective.

Comorbid disorders can also impact CH medications including oxygen therapy making them less effective.  In working with the heavy hitting CH'ers who have not had a significant improvement with this anti-inflammatory regimen after more than a week, we found they all share one or more of the same comorbidities.

These comorbid disorders include cardiac, renal, and thyroid insufficiencies as well as COPD and diabetes.  Moreover, these same CH'ers also tend to be refractory to other CH preventatives and abortives.

There appears to be concurrence on at least some of the comorbid disorders we noted as a multivariate analysis conducted by Zidverc–Trajkovi JJ et al. and reported in an article titled: Comorbidities in cluster headache and migraine, Acta Neurologica Belgica, 04/18/2011, that chronic sinusitis and diabetes mellitus, adjusted by gender, age and duration of headache, are more frequently associated with cluster headache(CH) than with migraine.

The interesting thing about the comorbid disorders we've noted with respect to the anti-inflammatory regimen is they all have the potential to lower arterial pH.

The sinusitis reported by Zidverc–Trajkovi JJ et al. is also of interest as it may be an indication of an inflammatory reaction that could easily encompass the sphenopalatine ganglion located in the back of the nasal passage and possibly spread to the trigeminal ganglion as the two nerve bundles are directly connected to each other by a branch of the trigeminal nerve.

What all this points out to me, is that as cluster headache sufferers, we need to make sure our PCPs and neurologists take a more holistic approach in treating our disorder to include looking for other comorbid disorders that can easily prevent CH medications from working effectively. 

In short, if we have one of these comorbid disorders, they need to be treated at the same time as our CH or it's entirely possible the medications prescribed for our CH will not have the desired therapeutic effect.  Some food for thought...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Apr 28th, 2011 at 4:23pm
Hi

It seems that vitamin-D3 supplementation might increase testosterone levels.

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Best Niels

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Apr 29th, 2011 at 3:56am
Thanks Niels, interesting article.

I'll try not to get too side tracked, might be best to start a new thread on this perhaps, but it might be on topic, or at least dove tail in.

I was born a man, started taking a set of hormones in 2006 to stop my testosterone, and another set to highly increase my oestrogen in preparing to become a woman. It is suspected, by a team studying the brain in the Netherlands, that this process alters the Hypothalamus in some people. The first oestrogen tablet I was on was fine, but then a doctor switched my prescription, and before long I started getting clusters and daily chronic headaches. It took us awhile to pin point the cause, and switch me back to the safer version of the hormone, but by then, the damage was done.

But, I do strongly believe that Clusters are very much hormone (specifically testosterone) and Hypothalamus linked. I'm sure we all know cluster are believed to be triggered by the Hypo. And they strongly believe the transition process transsexuals go through alters the Hypo, and my neuro knows several transsexuals with clusters as a result of hormones we took.

So, if Vit D3 restores some of the Testosterone I've deprived my system of, and that helps, that might make sense.

One way of checking your Testosterone levels yourself: Maybe not so noticeable in men as it will be in women. Fingernail strength is directly linked to the level of T in your system. The stronger your nails, the more T you have. I used to have wonderful strong nails before I transitioned and had surgery. Now, I have very little T, and have brittle useless nails. Will be watching to see if Vit D3 helps with my nails.

Renée


Title: Re: 123 Days PF And I Think I know Why
Post by Radar63 on Apr 30th, 2011 at 1:47pm
Hi Batch

Just checking in.  Still completely pain free, had a few shadows during the last few days however they are minor and essentially seem to last the duration of a pulse.  Perhaps that means my issue is perhaps inflammation related along with the Ph levels.  Interesting reading Renee above, my finger nails have been brittle since I started the current cluster (since Feb).  Interesting.
Have found now that being on the regimen for 3 weeks has had a number of other positive benefits, the main one being extra energy, my teeth seem somehow firmer and stronger without any little aches that I used to get all the time.
Am waiting to get an appointment with the neuro to let him now that I have entirely different clusters, in fact that I may have gone chronic but there is this wonderful gentleman in the US who has enabled me to sleep, smile and enjoy life.  I so hope the regimen will also help others as it has me.  I have also passed the wine and beer test!
Thank you again and deep wishes of pain free days to you all.
Ian :D

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 2nd, 2011 at 6:51am
Ian,

Thanks for the update...  Knowing your response to this regimen continues to be favorable without any adverse side effects is great news...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Ricardo on May 2nd, 2011 at 3:14pm

Powermonkey wrote on Apr 8th, 2011 at 1:48pm:
Seems to me that in my case - D3 definitely is working.

Has anyone had NO success so far with it?  I think it would be interesting to hear about the cases that do not, since this seems to be working for so many people in this thread


No success on my end.  I wonder if it's a little early to be claiming an 80% success rate.  I'm betting people that have gotten help are a lot more likely to post about it

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on May 3rd, 2011 at 10:13am

Ricardo wrote on May 2nd, 2011 at 3:14pm:

Powermonkey wrote on Apr 8th, 2011 at 1:48pm:
Seems to me that in my case - D3 definitely is working.

Has anyone had NO success so far with it?  I think it would be interesting to hear about the cases that do not, since this seems to be working for so many people in this thread


No success on my end.  I wonder if it's a little early to be claiming an 80% success rate.  I'm betting people that have gotten help are a lot more likely to post about it



I've had improvement, I think. Still a bit early to tell, and I also still need to add zink to the mix. But, I was looking at my cluster headache graph this morning before work, and noticed an interesting trend.

Over the last 16 months, every cluster cycle has a very clear pattern of increasing spikes on the graph. For example a 1, 3, 4, 6, 8, 10 type pattern. This repeats and repeats and repeats so that the graph looks like a series of hills all leaning to the right. But, since starting the Batch 3 Regimen, there is suddenly this hill leaning to the left. I have one set of numbers going down, an 8, 6, 4 type grouping. Never had that happen before. EVER!

Renée

Title: Re: 123 Days PF And I Think I know Why
Post by chrisw on May 4th, 2011 at 10:12am
as soon as I read this,  i ran out and bought the supplies, and started the regimin.  It hasnt helped me at all.  I have had to rely on cafergot to help at night or i was getting hit every 45 min all night long.  I gave it two weeks to kick in to test it to see if it would help.  However,  I have to take anti convulsants since I have epilepsy,  and i dont know if that affects it.  It does affect "clusterbusting".  so maybe it also affects this type of regimin.

oh well, it was worth a try.

christine :(

Title: Re: 123 Days PF And I Think I know Why
Post by RichardN on May 4th, 2011 at 4:22pm
Hi Batch

  Have been trying to catch up on what's new with CH . . . been away from the board . . . and apologies to all for "laying down my oar" for so long.

  Good news is that for the past two years I've been mostly PF.  In 2010, only used 30 "E" tanks . . . so far this year, have 5 empties . . . all hits have been low level and easily killed in a few minutes with the 02.

  How this relates to your thread?  About two years ago my GP prescribed large doses of D3 (can't find the bottle, but may have been 15-20,000 IU).  Since then, I take 5,000 IU per day, plus a multivitimin (which I've taken since going on water therapy 5/04).  It's been a year since I've had a real "dance" with the beast . . . and I do try and eat fish 2-3 times a week.

  This past week, have used one tank (several low level hits), as I've been ill with some chest congestion and pollen related sinus/eyes/throat problems . . . which pretty much put me down and out . . . and when I'm sleeping, I'm not drinking the water at my normal levels . . . so not surprised at the hits . . .BUT . . . they're all low level hits.   Two years ago, a reduction in water intake would/could trigger a series of attacks (Kip 5-8+).

  A note to those that don't know my history.  I'm 64, came here 2/02 after 13 months mis-diagnosis . .  6-8 attacks daily, sometimes 3-5 at night, Kip 5-9, most 20-45 min. and the occasional 1-2+hr horror.   After wife found this site, got Verapamil & 02 script and started being able to have some control of the beast.  3/03 almost died from viral meningitis, 5/03 diagnosed w/bladder cancer . . . surgeries, bcg treatments, then finally radical cystectomy (removed bladder and prostate . . . I DO NOT have a stoma, but have to self cath 4-5 times a day . . . still beats having a bag stuck to my stomach), followed by 3 months chemo.  All this time, I was taking the Verap and always had my 02, but after the surgery, my attacks were less frequent and intense.  Prior to the chemo, I stopped several meds (including the Verapamil) . . . attacks still manageable with the 02 (and ice) . . . thought it might have been the chemo "juices" . . . nope . . . the water! . . . which is required in large amounts to keep my neo-bladder and kidneys flushed to cut down on UTIs (have had several).   I still will tell folks not to discount "water X 3", but always with the warning, "it IS NOT easy to do.

  I think you've got something with the D3, and if I can find some smaller fish oil capsules (can't tolerate the big ones), will start adding that to my daily regimen.

  Thanks again,

    Be Safe,   PFDANs

     (mostly pf) Richard

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 5th, 2011 at 2:23am
Hey Richard,

Thanks for the update. According to a number of Integrative physicians and dietitians who recommend vitamin D3 supplements, 5,000 I.U. is a perfectly good target maintenance dose.

Your diet sounds a lot like mine with the exception of my choice of fluids...  OJ and coffee in the morning (I roast my own green coffee beans), lemonade...  or occasionally margarita mix (sometimes with tequila) for lunch, water and a couple cans of diet coke during the day... at least one or two with some Demerara rum any time the sun's over the yardarm, and a glass of wine a couple times a week with dinner.

It sounds like you know your body a lot better than most so my guess is you'll titrate the dose of the other supplements accordingly.

There are still a lot of unanswered questions about this regimen... like why it works well for some and not as well for others...  or why CH'ers who don't benefit from taking this regimen appear to have similar comorbidities...  but we're working on ways to connect the dots.

Take care and thanks for the update...

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by beautyofthebeast on May 8th, 2011 at 6:35am
Fantastic thread...thank you so much Batch for posting  :-*

My story so far..........

I have been episodic for 25 years, each bout lasting approx 3-4 months. I have been in cycle since Nov 2009, so believe I am now chronic. I was taking 960mg verapamil, O2 and Imi injections to control the 3-4 daily hits.

After reading this post 5 weeks ago, I went to my local pharmacy and bought the Omega 3 fish oil caps and vitamin D tablets.

I started taking 4000mg omega 3 fish oil and 2 x 25 ug (2 x 1000 iu) as well as the verapamil.

After a few days, the beast was gone and has been ever since  ;D.  I have tapered the verap dose and now take only 240 mg daily and hope to reduce this further.
I have passed the beer test and the G&T test  :D  ;D feel less tired and can now go to the loo again  :-[

So far, amazing...I will keep you updated.

Adrienne xx




Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 8th, 2011 at 1:22pm
Hey Adrienne,

Great feeling isn't it? 

Good on you for giving this regimen a try and reporting the results.

It's going to take a week or two...  but I hope to have an on-line survey tool available on this regimen so that folks who've tried it can report their results. 

This should help us to collectively get our arms around this regimen so we can answer the question of efficacy more accurately and the dosing levels that appear to work best. 

The really important information this survey will provide will come from the folks who don't get the same response as you or me... I suspect the same list of comorbidities will solidify and that will provide the folks researching cluster headache with a new perspective and areas to investigate.

With information in hand from a survey like this, we'll be able to take the next steps towards a study... 

Again, thanks for the feedback...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Amanda07 on May 8th, 2011 at 7:59pm
SO I thought I'd give a quick little update - I was on 4000 IU of VD3 and 3000 of Omega Fish Oil (now on 4500 because I'm taking the liquid form) and I was completely pain free for 13 days...then suddenly my shadows were back in force, I have no idea why! I've upped to 5000IU for the last 3 days and I'm hoping to go back to PF (because my GOD was that wonderful) but so far no luck. Any ideas why it would have been working wonderfully and then suddenly gone kaput?

Prior to the 13 days, I had been on lower amounts - I started at 1000 IU and then when I had a day of light shadows, I upped the dosage which was working. Between each upping of a dose, the pain free time became longer...And within 2 days I would see the results of the upping. This time I'm 3 days out from upping to 5000 IUs and it hasn't really changed much. I'm only getting lower level kips but that's normal for me. I would love to hear anyone's thoughts...

Title: Re: 123 Days PF And I Think I know Why
Post by wishbone on May 8th, 2011 at 9:46pm
You did not mention that you were taking calcium citrate.  This you need to do, but maybe you should really increase you dose of D3 to 10,000 IU per day for a couple of weeks.  Also are you drinking lemonade with lunch and diner?  Not to bore everyone with my questions, but I actually started with 20,000 IU of D3 per day for 3 weeks, along with 3,600 mg of Fish Oil and 3000 mg of Calcium Citrate.  I think it worked so now I am on a maintenance dosage of D3 which is 5,000 IU per day. 

Bottom line you are at best now just taking the maintenance dosage and not the the wham bam dosage of D3.

Good luck and I hope and pray you are PF and Shadow free soon
Wishbone

Title: Re: 123 Days PF And I Think I know Why
Post by stingynina on May 11th, 2011 at 5:02pm
I am an in home care provider and I have a client who has been suffering this head pain for years, and just last week was diagnosed with CH.  After all this time....they kept saying it was sinus...blah blah blah....well...FINALLY this crackpot doctor sent him to a neurologist.....they put him on prednisone (sp) and vicodin.  He has these every few minutes all day long.  After reading up on CH, and finding this thread, I called him right away and told him about the Fish Oil and vitamin D3.  What does he have to lose except the crippling pain of CH?  He is 87 years old.  I will keep you posted on his results.  Thanks for the insight Batch!

Title: Re: 123 Days PF And I Think I know Why
Post by RichardN on May 11th, 2011 at 9:18pm
Stingynina

  Thanks for taking the effort to help your patient.

  The D3 & Omega3 regimen does look very promising and I believe it's responsible for my current (mostly) pf period.  Have been chronic since 1/01 and this place saved my life.  Take another step:

  See if you can find a way to get him oxygen.  Is a miracle abortive for most of us . . . please read more about it's use/effectiveness.

  Would you post another introduction (or copy your post and post it)  on this board (Meds/Therapies) . . . or the "Getting to Know ya" board? . . . more foks will see/read the thread and you'll get numerous suggestions .  .  . and here, they come from people who truly know his pain.

   Be Safe.

     Richard

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 12th, 2011 at 4:58pm
87 !!!  Yikes !!!  :o

Stingynina, at this point I thought my going into remission was either due to this regimen or I'd outgeezed the beast...   Looks like my age may not be a factor given your home care client's age with CH...

Please keep us posted on the results if he gives this regimen a try.

Thanks and take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on May 13th, 2011 at 6:52am
In addition to Batch's Omega3 Regimen, I'm also taking 250mg Topiramate each day (125 morning and night). The longest gap between attacks is about 9 days before starting on Omega3/D3, and since then I'd probably gotten to 12-13 days when I missed a couple morning doses of both Omega3 and Topiramate.

If you know anything about Topiramate, altering the dose (or missing a dose) messes with your equilibrium. I thought it a bit odd that I felt off balance this week. Just slightly, needing to put my hand on the desk to steady myself, or nearly walking into a filing cabinet at work. Not quite dizzy, just slightly off kilter. Wasn't till I went to take my evening dose that I realised I'd missed my mornings.

But, more than that, it also might explain the killer clusters of the last two evenings. I haven't been on the Omega3 regimen long enough to say for sure that it has made a difference, so this might all be premature. But since January, the longest I've gone is 9 days cluster free. And since being on Omega3 I've gone more than 12 (will need to check my calendar later to be sure of the numbers). But then when I miss a dose or two I get hit. Well, makes it interesting.

Granted, it could just be that the gap is getting a bit longer of its own accord and the Omega3/D3 is having no effect. Will know more in a month or two when I've had time to give it a proper test.

Oh, and just to add, I haven't yet added zinc to the mix. I know that is part of the regimen, and probably will one day. But seems to be effective for me without it, so far.

Renée

Title: Re: 123 Days PF And I Think I know Why
Post by bejeeber on May 13th, 2011 at 11:12pm
Good call stingynina about getting the 87 year old on the vitamin D3.

Those are some hellacious drugs to have been prescribed to an 87 year old. I hope O2, D3 etc. can provide relief instead.

I'd never heard of an 87 year old with CH before. A sit scary for those of us who've been hoping for a complete remission if we reach elderly status, as apparently is often the case.

Title: Re: 123 Days PF And I Think I know Why
Post by scottr1966 on May 14th, 2011 at 3:06pm
Hey guys, I have not been here in a while and I have never posted much here. I have been actively engaged at cluster busters for about a year. On the vitamin regimen, I had started the D3, Fish Oil, Magnesium/Calcium a couple of weeks ago. Initially I took only 800iu of D3 along with 3600mg Fish Oil, and a Calcium/Mag/Zinc combo per day. I don't know if any one else has had this side effect but my tongue and throat became kind of raw so I stopped the whole regimen and it cleared up. I wonder which of these supplements caused that or was it the combo of them all? I may just re-start with the D3 and see what happens. Then begin to incorporate the others, any thoughts on this?

Also I was nauseous. Is this the D3?  Never mind. I took one 5000iu pill today and I am nauseous. Of course I take all this with food.

Thanks,
Scott

Title: Re: 123 Days PF And I Think I know Why
Post by alleyoop on May 14th, 2011 at 3:13pm
OK, just for the record, here are my results:

I took the following for 10 days:

10,000 i.u. (2-5,000) D3 - Nature's Bounty

3600mg (3-1200mg) Fish Oil - Omega 3&6 - Nature's Bounty

2 Calcium Citrate tablets - Kroger store brand - containing
630mg calcium
500 i.u. vitamin D
10mg sodium

At least 2 20oz glasses of fresh squeezed lemonade



I am in high cycle and was averaging 2 to 4 hits daily.  After 3 days, my activity actually picked-up to 4 to 8 hits daily.  I also started having up to 4 wake-up hits per night.  Six days of this convinced me that the regimen was not only not working for me, but possibly making it worse.

As soon as I stopped, the hits started decreasing, but that may well be coincidental.  I busted with a half gram of psilocybin taken on my last bad night, and it seems to have done the trick.  It has now been 10 days post D3 regimen, and I am having more PF days than otherwise.  Also the wake-up hits have stopped.  This by no means means that this D3 regimen doesn't work; it just didn't work for me.  It could be that my cycle is winding down, and that it coincided with stopping the alkaline regimen.  At any rate, I am not complaining.  The meds that I take daily could also possibly be responsible for my lack of success (see Caveat).

Caveat:
The following meds are taken daily:

AM:
verapamil 240mg
clomiphene citrate 50mg
folic acid 800mcg
omeprazole 80mg

PM:
verapamil 240mg
melatonin 9mg
simvastatin 40mg
ambien prn

I am happy that there have been so many success stories with D3; it just didn't seem to work for me.  :-/

bobb

P.S.
I don't know if the fact that I was using a calcium supplement that didn't include magnesium and zinc, had anything to do with it or not.

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on May 14th, 2011 at 4:04pm
Hi bobb

It took me 2 months to get pain free with 5000 IU vit-D3 and 500 mg magnesium. Now 2½ years later still no CH.  :)

Title: Re: 123 Days PF And I Think I know Why
Post by alleyoop on May 14th, 2011 at 6:28pm
Thanks for the feedback nhs!  I'll definitely give it another go, and use the right calcium supplement this time.  I'll also give it a couple of months and report back here what happens.

bobb

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 15th, 2011 at 5:39pm
Bobb,


alleyoop wrote on May 14th, 2011 at 3:13pm:
I don't know if the fact that I was using a calcium supplement that didn't include magnesium and zinc, had anything to do with it or not.


Magnesium and zinc both play a significant roll in this regimen.  Magnesium is involved in many of the cluster headache related processes and zinc is essential not only for for our immune systems, it's also a key element in carbonic anhydrases, an enzyme we need for hemoglobin to function effectively in releasing carbon dioxide into exhaled breath.

I've found the Kirkland brand of calcium citrate formulated with additional vitamin D3, magnesium and zinc works best for me.  I get it along with the rest of this regimen at Costco...  In a pinch you can also use Citracal Plus Bone Density Builder™ as it has a similar formulation of the above components.

Most of the CH'ers who have followed this regimen at the doses I take reported an improvement in 24 to 48 hours.

That you haven't responded to this regimen is not surprising.  It could be due to the missing magnesium and zinc, a low arterial pH or both.  It could also be due to an irritant or allergic reaction that's in your environment or food that's resulting in a level of  neurogenic inflammation that will take longer to overcome with this regimen.  Peanuts and gluten are two potential allergens you might want to avoid for a while to see what happens



alleyoop wrote on May 14th, 2011 at 3:13pm:
The following meds are taken daily:

AM:
verapamil 240mg
clomiphene citrate 50mg
folic acid 800mcg
omeprazole 80mg

PM:
verapamil 240mg
melatonin 9mg
simvastatin 40mg
ambien prn

I am happy that there have been so many success stories with D3; it just didn't seem to work for me.


You'll have to forgive me for laughing at the laundry list of med's you're taking a.m. and p.m.   I'm not making fun of you because many years ago when I was first diagnosed with ECH...  I did the same thing.  I had two pill caddies, an a.m. and p.m. caddy, both loaded for my week's supply laundry list of meds.

It didn't take long for me to discover the preventatives had too many adverse side effects...   Too little relief and too many onerous side effects...  In short the risk:reward ratio sucked...  and I was still getting hit.

I stopped taking all the prevents, accepted the fact that I was going to take hits, but was very confident that oxygen therapy at flow rates that support hyperventilation could abort my CH very reliably in an average of 3 to 7 minutes depending on the pain level.

I still kept imitrex (sumatriptan succinate) handy for the times I was trapped away from my oxygen therapy kit like during air travel where I would get nailed on every flight.  There were also times in the early years where I was taking the maximum daily dose of imitrex tablets for so long I developed angina.

I also see you're taking statins...  Your cardiologist or PCP must think that's the only way to keep your cholesterol in check... 

I went through a bout of elevated cholesterol and triglycerides during a clinical study for an unrelated condition at NIH.  Part of the study protocol called for sirolimus (rapamune), an immunosuppressant normally given to kidney transplant patients to prevent rejection.  It has a well known side effect of jacking up cholesterol and triglyceride levels...  and it did.  My total cholesterol jumped from 167 to over 250 and my triglycerides climbed well above the normal levels in one week on sirolimus.

The Principal investigator for this study gave me two options...  Go on statins (neither of us wanted to do that), or go on a low cholesterol diet with Omega 3 Fish Oil. I cut out sugars and limited intake of carbohydrates. 

I ate lots of green & yellow veggies lean meat, chicken, and fish.  I also started taking 3600 mg. Omega 3 Fish Oil and a natural plant sterol called Cholestoff.

In two weeks my total cholesterol was below 190 and my triglycerides were back in the normal range.  A month after starting this regimen, my total cholesterol was below 150...  and I was still taking sirolimus...  What I'm saying is there are other ways to reduce cholesterol levels...  you just need to discuss this with your cardiologist or PCP.

All that is history...  Since starting the anti-inflammatory regimen I no longer need to take any of the abortives...  and that includes oxygen. 

The light came on shortly after starting this regimen last October...  For over 16 years I'd been taking very potent and very expensive medications with all kinds of side effects because my neurologists and I though they were needed...  yet I was still getting hit...  What I wasn't doing was giving my body it needed.

The physicians who practice integrative medicine are clearly on to this as well.  They still treat with many of the same pharmaceuticals but only in moderation and only if the more holistic methods of diet, vitamins and mineral therapy are not achieving the desired therapeutic effect.

Accordingly, since last October I've taken only the anti-inflammatory regimen...  My goal was to come off all the invasive med's and control my CH through more holistic methods... 

It's working...  My wife takes it as well and she doesn't have CH.  Both of us feel great, we're loaded with energy and both of us have lost weight.  My guess is the weight loss is due to the increased activity made possible by this regimen.

Hope this helps.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by RichardN on May 15th, 2011 at 7:17pm
A bit of an update

I mentioned that I haven't had a real "dance" with the beast in over a year.  Friday, I called my pharmacist to ask when I got my script for D3 (I think 20,000 IU per day for a month) . . . 1/13/10 . . . fourteen months ago . . . have been taking 5,000 IU per day since.

What hits I am getting are all VERY low level and killed quickly with the 02  . . .  and can go a week or more without any sign of the beast.

So  . . . am going to alternate 5K & 10K IU daily and add the omega 3 fish oil (my druggist is going to order the smaller capsules for me . . . can't tolerate the big ones), and the calcium citrate.

You may have found a "magic bullet" for many Batch (especially for Auban Bird I hope).

Will keep you apprised.

   Be Safe . . . CONTINUED PFDANs

       Richard

Title: Re: 123 Days PF And I Think I know Why
Post by dewalt on May 15th, 2011 at 9:15pm
This is my first post I've been having ch for 23 years I'm taking depakote 500 mg one in the morning and one at night and verapamil 240mg in the morning I started taking vitamin d3 10000iu and omega3 fish oil 3000mg last monday with no results still having 4 to 5 hits a day started the caltrate yesterday will let you know how it turns out

Title: Re: 123 Days PF And I Think I know Why
Post by AubanBird on May 15th, 2011 at 9:30pm
wow.   i just got done reading all nine pages.  i didnt do that before i started on the D3/fish oil.  i just saw vitamin D3 and fish oil was working for someone and remembered somebody talking about vitamin D and headaches on a family talk show adn though "why not?  cant hurt..."  i didnt expect for the headaches to completely go away!  i had no ideah it was working for so many people.  i guess its good i have an open mind...  then again, my opend mind lends me to trying things like capsaicin.  to be fair though, the incredible caughing and sneezing fits the first few times i squirted the stuff('chets gone made' from tiajuana flats) up my nose did seem to abort them...  anyway, im glad i landed at this site.  i do have a question though, does anyone know if kidney and liver damage would effect vitamin d levels?  i only ask because of my medical history, with my CH getting really bad after my kidneys and liver almost failed due to rhabdomyolisis.  i have no ideah how i recovered from that injury, as the doctors werent even sure i would live when they first wheeled me in.  just stubborn i guess.  i know the huge lactic acid buildup from that accident wreaked havoc on my arterial ph...  anyway, ill continue posting progress on my intro thread, in "getting to know ya"
Bird

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 16th, 2011 at 11:21am
Hey Bird,

The body synthesizes its own vitamin D3 in the skin when exposed to the UV in direct sunlight and can make 10,000 I.U. in as little as 30 minutes if no sun block is used.  Omega 3 fatty acids are present in highest concentrations in cold water fish like herring, sardines and salmon.

There shouldn't be any worry about toxicity dosing with 10,000 I.U. of vitamin D3, but it's a good idea to consult with your doctors given your history of compromised renal and hepatic functions before you start this regimen. 

You should include the calcium citrate tablets formulated with magnesium and zinc.  The extra calcium and magnesium is needed with higher doses of vitamin D3 in order to build and maintain bone mass.  Zinc plays a role in several functions in the body including the immune system and it's also an essential element in carbonic anhydrase, an enzyme that helps transport carbon dioxide from the body to the lungs for release in exhaled breath.

Hope this helps.

Take care, 

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 16th, 2011 at 12:25pm
Dewalt,

Are you also taking the calcium citrate formulated with additional vitamin D3, magnesium and zinc?  It appears these mineral supplements are essential parts of this regimen.

If you are taking it, you might want to check through this thread for some posts I made on comorbidities.  You can use the search box at the upper left part of this page to search for links discussing the comorbidities CH'ers are reporting who are not seeing the same results as others with this regimen.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by dewalt on May 16th, 2011 at 5:06pm
I started taking the citracal with d3 magnesium and zinc saturday the ch's were a little less severe today aborted pretty quickly with oxygen can you explain more about the comorbidities it seems like cutting grass always triggers a headache even with a mask this cycle as been the worse i have ever had and the longest 4and half months usually 3 months nothing has seemed to work

Title: Re: 123 Days PF And I Think I know Why
Post by AubanBird on May 16th, 2011 at 8:42pm
thank you for your reply batch.  i just got done looking up everything i could about vitamin D production, most of it by looking up things on this page:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

it left me with far more questions than answeres, but it was a good start for my quest for knowledge.  it also left me wishing i kept all those textbooks on biochemistry...(i was a wierd kid...)
-Bird

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 17th, 2011 at 12:25am
Dewalt,

A rough tally of folks who have not had a marked decrease in the frequency or severity of their CH after a few days on this regimen revealed a not too surprising finding...  They all suffered from one or more of the same group of comorbid conditions/disorders that ranged from cardiac insufficiency with stents and pacemakers, diabetes, thyroid insufficiency, renal insufficiency, COPD, and some I suspect are having an allergic reaction to some form of allergen.

The interesting thing about these disorders is they either have the capacity to lower arterial pH which results in a general vasodilation, or they result in a general inflammation that likely spreads to the trigeminal ganglion area that also triggers vasodilation.

In either case the level of vasodilation and inflammation is such that this regimen is unable to overcome it.  If you think about it, there are folks who do not get relief from taking prednisone...  and that's a very powerful anti-inflammatory.

The first thing I'd suggest is to contact your PCP and get an annual physical with a good lab workup including a complete chem panel & CBC.  Even if you're already taking 5,000 to 10,000 I.U. vitamin D3 a day, having your 25(OH)D serum levels checked to verify your level of of this vitamin D3 metabolite is a good idea and will help you calibrate the dosage. 

The attached paper on vitamin D3 deficiency provides the suggested levels for the 25(OH)D test.  Bird, you might find this paper interesting too.

Other than that, cutting out all forms of gluten, sugars (fresh fruits like oranges apples and bananas are OK), and peanuts for a start might help as these are common causes of allergic reactions. 

A diet high in alkaline forming and anti-inflammatory foods might also help.  A good listing of these food types can be found at the following links:

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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Hope this helps.

Take care,

V/R, Batch

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Vitamin_D_deficiency.pdf (41 KB | 128 )

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 17th, 2011 at 2:01pm
Hey Scott,

Thanks for the post on the vitamin D3, Omega 3 Fish Oil and calcium supplements.  Sorry to be so slow in responding. 

STOP TAKING VITAMIN D3 !!!  It appears from the symptoms you've listed, you are having an allergic reaction.  If any of the symptoms persist see your doctor asap. 

The incidence of reactions to vitamin D3 are relatively low but they do exist.  Be sure to read page 2 and 3 of the following link for reactions and possible interactions with other medications or comorbid conditions:

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The reaction may be due to the vitamin D3 (cholecalciferol), but it could also be a reaction to one or more of the other ingredients of the vitamin D3 liquid softgels you're taking.

Depending on the mfgr...  the other ingredients include but are not limited to: propylene glycol, soybean oil, gelatin, or vegetable glycerine.

What brand of vitamin D3 are you using and what are the other listed ingredients?

What brand of calcium citrate mineral supplements were you taking? 

If you were using the Kirkland brand, two capsules contain 800 I.U. vitamin D3.  If you had no reaction to this formulation, it could be one or more of the other ingredients in the vitamin D3 liquid softgels that's causing the allergic reaction.  This brand of calcium citrate also contains propylene glycol so if there was no reaction, it may not be the propylene glycol that's causing problems.

Finally, did you have any problems taking the Omega 3 Fish Oil?

Thanks again, and please keep us posted. 

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by dewalt on May 17th, 2011 at 7:13pm
Thanks Batch. I will call my pcp tomorrow and set up an appointment for a physical and will let you know how it comes out. I'm going to take this information with me and discuss it with him

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 18th, 2011 at 2:39am
Dewalt,

Good move!!!  As I've said before and I'll say it again...  I'm not a doctor. 

I started this post to let fellow CH'ers know what was working for me. If my results made it sound good enough to try...  I suggest a talk with your primary care physician or neurologist first... 

Even over-the-counter vitamins, minerals and supplements can produce a reaction as we've already seen in some of the comments...

In the age of medical specialization, it's not inconceivable to see several specialist who don't have the big picture with respect to your overall health or have a complete tally on all the medications you're taking...

It's kind of like the three blind men coming up to an elephant...  One blind man claimed the animal was docile and has very big ears...  The second blind man claimed the animal has a marvelous prehensile nose that can suck peanuts right out of your hand...  or pocket...

The third blind man wasn't having anything to do with the descriptions provided by the first two blind men...  He thought this was a vile and disgusting animal...  saying...   "I pulled on its tail and got showered with very large and smelly Nairobi trail markers...

My analogy might not be spot on...  but the point I'm trying to make should be very clear...  We all need a physician who keeps tabs on all that ails us and all the medications we're taking... even OTC meds, vitamins, and minerals...

The Navy thought so much about this concept they came up with Flight Surgeons...  Doctors who completed med school, internship, and then the Navy stuck them in the cockpit of an airplane and taught them how to fly so they could understand what we pilots were going through from a medical, physiological and psychological perspective...

I learned the basic rule a long time ago... There are no secrets between me and my Flight Surgeon... 

It was not uncommon to take the Squadron Flight Surgeon up on a hop in one of our jets...  If nothing else, it proved he... or she... was just as spellbound over the magic of flight as we were...

Make it a point to discuss your cluster headaches and any other medical condition you may have along with all the prescribed and OTC med's you're taking with your primary care physician (PCP).  It just makes good sense...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Radar63 on May 23rd, 2011 at 3:49pm
Hi Batch

Just checking in, still completely pain free, lots of days now.  Pretty sure I am out of the episode, would ordinarily be due another batch in the next four weeks.  Feeling great, less tired, skin is great, teeth feel wonderful, joints are free and smooth.  Partner is just asking when it will stop me farting!
Seriously I have had complete relief since i started taking the regimen.  Have spoken to a couple of friends one who has really acute migraines nad they are trying as well.  Will get back to you with their results.
Wondering when I send my O2 back, think I will wait until I have missed for a long time.
Thank you again for sharing.
Ian ;D ;D ;D ;D

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 25th, 2011 at 1:29pm
Hey Ian,

Thanks for the update.  Wonderful feeling isn't it?  My oxygen kit has been sitting in the corner under a dust cover since last October...   

Feed partner the same regimen along with some oatmeal with extra oat bran and try for a duet.

I'm keenly interested in reports from migraneurs on this regimen.  There's reason to suspect it will help them too.

Take care and thanks again for the update.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Amanda07 on May 28th, 2011 at 8:16pm
Hi guys! I have a question about the zinc and magnesium...is there a certain level we should be taking or aiming for? I'm currently taking just a zinc, B6 and magnesium tablet because my chemist had run out of the calcium/mag/zinc/vit d one and I'm wondering whether this is affecting the level of success...when searching for something to take until they get the others back in, I wasn't sure what levels of mag and zinc I should be looking for. Any thoughts?

I am doing better since I started the mag and zinc, but haven't returned to the blissful pain free days I original had - still getting annoying shadows...

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on May 29th, 2011 at 11:42pm
Hey Amanda,

Good question.

The ingredients for the anti-inflammatory regimen I started are shown below.  I get them at Costco.

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The calcium citrate tablets (2 each) that I take daily contain 500 mg. calcium, 800 I.U. vitamin D3, 80 mg. magnesium, 10 mg. zinc and a trace of copper...

The Kirkland brand formulation with calcium citrate easier on the tummy than calcium carbonate, it satisfies the additional calcium required when dosing with vitamin D3 at or above 5,000 I.U. and the calcium citrate also acts as a buffer on the stomach's gastric juices when washed down with lemonade or limeade high in citric acid.

If you can't get the Kirkland brand of calcium citrate, Citracal Plus Bone Density Builder® is formulated with similar levels of each ingredient. If you can't get either brand, try to match the ratio of ingredients listed above.

Hope this helps.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Amanda07 on May 30th, 2011 at 8:23am
Thanks so much Batch! I'm in Australia so I find it difficult to match brands (without buying online) so I'll be able to search for something similar with those amounts.

The tablets I'm using at the moment while waiting on the restock of the citrate tablets contain Zinc sulfate monohydrate 15.6mg (equiv. to elemntal zinc 5.7mg), B6 25mg and Magnesium oxide - heavy 51.5mg (equiv. to elemental magnesium 30mg) and I take these three times a day. So while I'm taking more zinc then your tablets, the mag still seems a little low (going off the elemental numbers)

Hopefully they have the citrate back in when I go down tomorrow!!!

I will say that although I'm still getting shadows, I'm slowly tapering off my verapamil and nothing is getting worse which definitely means that the regime is doing something, not the verapamil. Hopefully when I get all the numbers right for a while, I'll go back to PF!

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on May 30th, 2011 at 7:41pm
Hi Amanda

Didn't realise you where from Oz.

I use the Natures own brand Magnesium/Calcium  & separate Zinc from Woollies; cheaper than the Chemist or Health food shops.
I haven't been able to find a combo of the 3 Vits, one thing to remember is if you take Magnesium alone for any length of time you will need to supplement with Calcium as the Magnesium will block the natural intake of the Calcium & cause muscle & joint pain.

Cheers
Barry

Title: Re: 123 Days PF And I Think I know Why
Post by Amanda07 on May 31st, 2011 at 6:39am
Hey Barry! Thanks for that! And yep, Aussie through and through :)

Yes I was considering a mag/cal and a separate zinc...or a mag/zinc and separate cal. I did find one with the bunch today, but didn't purchase it just yet. I might write down the levels in it when I go past the chemist tomorrow and then run it by everyone before purchasing...I can't remember the numbers off the top of my head! It might work out better to have them separate. :)

Title: Re: 123 Days PF And I Think I know Why
Post by sandie99 on Jun 7th, 2011 at 2:25pm
Batch,

This trial is now known here in Finland, too. I checked one Finnish ch site and there it was, one other clusterhead had added it there. :)

So I'm not the only Finn who knows about this and can check it out. I added omega3s into my daily vitamin regimen in early April and results are clear: it helps me, too.

Only the flu (which begun last week) brought ch back. Otherwise, I only got problems when I was visiting my aunt and was not able to take my vitamins on time.

PF days to all,
Sanna 

Title: Re: 123 Days PF And I Think I know Why
Post by Brew on Jun 7th, 2011 at 2:32pm

Quote:
I only got problems when I was visiting my aunt and was not able to take my vitamins on time.

I can only conclude that you should NOT visit your aunt anymore. She sounds like a tyrant.  ;D

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jun 7th, 2011 at 7:11pm
Sanna,

Thank you for the SITREP on the anti-inflammatory regimen from Finland and that it's working for you.  Great News!

I hope to have an Internet survey site set up in the next few weeks to capture some data on this regimen from CH'ers who have given it a try...  That way when I take the results to the leadership of the International Headache Society, we might just generate enough interest for a multi-site international study of this regimen... 

Favorable results from a study of this regimen could result in its expanded use worldwide as a more effective, less expensive and healthy alternative to the more invasive medications prescribed for CH today.

Thanks again for the update and take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by oxyrunner on Jun 23rd, 2011 at 4:11am
Hi,
I just wnted to update you on my latest Dr visit. I have been on 14,000iu D3 for 4 months so they sent me for some blood tests. It turns out that my vitamin d levels are so low they are "through the floor" and "little old ladies that never get sunlight and are being tube fed have higher levels".
Calcium, magnesium etc were all within the normal range. So I have been prescribed 20,000iu daily with a view to further blood test in 3 months. Has anyone else had this blood test and if so what were the results?
Also, due to the wonderful Batch and his vitamin regime, my Dr has prescribed this to another CH and he is now also pain free  ;D

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jun 23rd, 2011 at 2:18pm
Oxyrunner,

Outstanding feedback!  Thank you!  The blood test for 25(OH)D, the serum level metabolite of vitamin D3 is the only other way of knowing you're taking an effective therapeutic dose other than experiencing a marked reduction in the frequency and severity of your CH, or better yet, going into a pain free remission. 

Having your doc up your vitamin D3 dose to 20,000 I.U. a day and prescribe this regimen for another CH'er who went pain free using it is a great endorsement.

A quote from the paper by Dr. Peter J. Lewis, MD on vitamin D3 deficiency is worth reading again...

He suggested that all patients should have their vitamin D levels routinely checked at least once or twice a year.

"As a practical guide to diagnosis and management, I would suggest the following (25OHD levels in nmol/L):

• <100 = Deficient
• 100-200 = Optimal
• 135-225 = Normal in sunny countries
• 500+ = Potentially toxic (this would require a sustained daily intake ≥ 40,000 IU)

[Note: To convert to nmol/L to ng/ml, divide by 2.5]

As far as treatment is concerned, a good rule of thumb (based on my personal experience of treating 100’s of vitamin D deficient patients) is that a dose of 1,000 IU of cholecalciferol (vitamin D3) will raise 25OHD
levels by approximately 10 nmol/L over 3 months.

Thus, an appropriate individualized dosage can be easily calculated. Therefore, for a patient with an initial blood level of 50 nmol/L, a daily dose of 10,000 IU/day would be required to raise their 25OHD level to about 150 nmol/L (i.e. the middle of the optimal range) over 3 months."

In another paper he indicated an even higher dose of vitamin D3 would raise the 25OHD level even faster...

Again, many thanks for the outstanding feedback.  Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Kay Jay on Jun 25th, 2011 at 2:14am
Batch,

I suck at reading my email lately. somehow my blackberry has a permanent x for all internet functions so i'm not receiving my emails in a a timely manner. i did get your email just like 5  min ago. thanks for providing me with that info. i feel stupid that i read it after i made my dumb thread :-/ . i'm going to look into your detailed regimen and try to acquire all that is needed. hopefully this does work for me and thanks for paying attention to detail on what has worked for you. 

Title: Re: 123 Days PF And I Think I know Why
Post by Garys_Girl on Jun 27th, 2011 at 11:24pm
Well, the pred never worked for Gary, but I'm armed with the needed supplements, and I started Gary on D3 and Citrical Plus (with mag and zinc) today.  The max Omega 3 I found was 300mg so didn't bother.  Hopefully I'll be able to add it tomorrow.

I'm 99.9% sure he's got some kind of undiagnosed comorbid thing going on because of the insane fever episodes he still has.... but we'll give it a few months.

Heck - expect it'll make me feel better.  Maybe I'll sleep through the night. 

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Jun 28th, 2011 at 9:36am
[smiley=hug.gif] Gary's Girl you are an amazing supporter. Sending positive vibes your way that you guys can get a handle on this damned thing.

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by dereksgirl on Jun 28th, 2011 at 11:06am
Hi Batch, glad to hear you are still PF!!
I thought I'd share my non CH experience with VD3, its been making me wonder...

A couple months ago after recognizing my 4yr deficient, we started giving him the liquid form from costco. He loved it and and would drink as much as we would allow him, so he had some very high doses. Nothing. Then about 6 weeks ago I started to feel an extreme fatigue return that I had experienced after my last pregnancy. (15 months ago)I had had my blood checked and was VERY low on VD3, my level was 23. I would literally drop to the floor in tears, not sure I could even crawl to my bed or the couch. (1st time I had ever had that checked or thought about it-lucky for me I was seeing midwives instead of docts or I probably would have been told it was my iron levels ;D) Anyways - so I knew the feeling and started taking the VD3 I had bought per Batches regimen for Derek (who has ECH). I also started to give it to my 4yr old, surprisingly he had no problem swallowing the pills and likes taking them (he is reading this right now and has reminded me that I don't have a 4yr old - he turned 5 this month  ;D ;D ;D)

What I expected was for our "tiredness" to go away (and Josiah's "hurting scalp" that I didn't know until reading one of Batches posts is a sign of VD3 deficiency).
What I didn't expect was for both of our sleeping patterns to be completely corrected. Josiah has ALWAYS had a hard time staying asleep. Since he was 2 and out of the crib he would get up and rock in his chair or go down and rock on the couch. (before then he would sit in his crib and bang his head. He broke 2 baby swings with his excessive banging. If we had him in the play pen he would bang so hard it would move across the room. He always had a knot on the back of his head. We have had him checked for autism-he really is perfectly normal besides this one weird trait) He always bangs his head back and forth when he is tired. He also would always be awake by 5am or sometimes earlier. Needless to say he was exhausted and jittery through out the day. Since being on VD3 he is sleeping in till about 7 am every morning - has not complained of his scalp hurting and we have not found him in his chair or on the couch...

It has had the opposite effect on me. I have ALWAYS had a very hard getting up in the mornings (we home school so can start our days later) It has always bothered me (and my hubby-I can be REALLY hard to wake up  :-/) but who can change when they wake up? Thought I was just a night owl. But since being on high doses (3-6000mg/day) My "clock" has reset all on its own. I have waken up at 5:30-6:00 every single day for the last 3 wks. I remember this happening 15 months ago when I doses on the VD3, but chocked it up to "more energy" as I had not found this sight and was not aware of the link it might have with the hypothalamus...but this time I wonder if the VD3 is doing more than just affecting the blood vessels, it seems to be having a direct affect on our internal clock...
PF wishes to all,
-DG

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jun 29th, 2011 at 5:59am
Hey DG,

What a wonderful post.  Thank you for taking the time to share it with us. 

It's good to hear the anti-inflammatory regimen and vitamin D3 have other marvelous health benefits over and above preventing cluster headaches or reducing their frequency.

I hope your post will encourage more CH'ers to give this regimen a try.

Take care and thanks again for the wonderful post.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Garys_Girl on Jul 3rd, 2011 at 3:10pm

Guiseppi wrote on Jun 28th, 2011 at 9:36am:
[smiley=hug.gif] Gary's Girl you are an amazing supporter. Sending positive vibes your way that you guys can get a handle on this damned thing.

Joe


[smiley=hug.gif] back at ya, and thanks!  But LOL, this time around I took a different tack.  Physical activity triggers his clusters, so he's gained some (ok, a lot) of weight.  I told him this is a weight loss regimen.  This way... he doesn't get his hopes up, he doesn't get to a point where he says "this isn't working, I'm not taking those anymore."  He might want a "magic bullet" to work quickly - but weight loss can take months and months and months....   :)

I've been making home-made lemonade that he is loving, so we're pumping him full of that.  He starts his morning with fresh-squeezed (yes, VALENCIA!) oranges (the health food store keeps them in stock).

We're still without insurance, so I gabbed with the health food store lady... and after doing the research (there is some, interestingly), I ordered and should receive shortly Twin Labs Tribulus Terristris extract - may have been discussed on these boards somewhere, but it apparently helps boost free testosterone back to normal levels.  AND I stuck him back on melatonin at night.  He got sick of taking it because it wasn't helping - now he doesn't even realize he's taking it LOL.  I just keep handing him pills.

My point, through all this blathering, is that hopefully, OVER TIME, as Barry and... Niels? - have experienced, this may help. They all seem to impact the proper hormone balance in the system (D3 is actually not a vitamin, but a non-sex hormone)... and we're not looking for pain free.  As one of the other heavy hitters pointed out, just lowering the frequently (or duration) of his hits would be wonderful.  *nodding*  Or, as Batch has tried to help us with before... just getting 02 to work again would be great (still have the M60 tanks and the on demand valve - and the Clustermask).

Title: Re: 123 Days PF And I Think I know Why
Post by bejeeber on Jul 3rd, 2011 at 3:20pm
Gary's Girl - just checking with ya, what sort of melatonin dose range are you thinking of? Asking because last time I tried melatonin I gave up on it, only to learn later that the 9 mg dose I was taking that I thought was 'maximum', was pretty low compared to others who had gone all the way as high as 21 mg before obtaining relief.


Garys_Girl wrote on Jul 3rd, 2011 at 3:10pm:
we're not looking for pain free


I realize how nobody wants to have high hopes dashed, but I'll keep fingers crossed that you'll do better than you're looking for.  :)

Title: Re: 123 Days PF And I Think I know Why
Post by Garys_Girl on Jul 3rd, 2011 at 4:47pm
Thanks.  :)

We had him on 9, then 10 then 15mg for a long time.  Then I started experimenting with immediate release vs. extended release.

Right now I'm just giving him 10mg - 5 immediate release and 5 extended release.

Edited to add: re: the testosterone.  In numerous blood tests along the way, his testosterone levels were normal.  Then last year they dropped like a rock.  We have no idea what changed.  He got fed up of docs, journals, feeling like a guinea pig and a pin cushion, so when the androgel ran out, he never got tested again.  But it's definitely low - and Renee's post about brittle finger nails confirms that.  The terribulus terrestris extract has been shown to increase it back to normal, but not above - so it may help Gary (but wouldn't help people with normal levels who want to boost them, which apparently people do.  Whatever LOL).

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Jul 5th, 2011 at 9:11am
I've started taking 3-4000 mg fish oil (70% Omega 3), 180 mcg D3 (7.200 IU), 500mg calcium/magnesium and 1500mg Taurin.  My attacks mostly come while asleep. Some non-nocturnal attacks, usually fended off with 0.33 L Red Bull.

day 0: 4 heavy attacks per night (before starting)
day 1: 3 heavy attacks per night
day 2: 1 heavy, 1 moderate
day 3: 1 light (no Imitrex inj)
day 4: No attacks (no wake up), shadows in the morning.
day 5: Still nothing. I'm beginning to believe.

I've been episodic since 1990. 8-12 weeks cycles and blessed with 12-24 PF months and maybe 5 attacks a week on average.  Always left side. The last years I've experienced instabilities: several side changes, short cycles outside the scheme. The last year I've had lots of clusters with less than a month remission time. I believe that means I've become chronic. On the bright side, many of my attacks have been moderate enough to stay away from Imitrex. Even if I inject only 2mg, there is payback time to be expected from every shot.
Due to the manageability of my episodic cluster, I've never used O2. I am in the process of getting it now.

So far the D3 regimen feels promising. Absolutely no side-effects either, besides restlessness  :).  I will stay loyal to the regimen and report back.

Thanks for all excellent advices!  Rune

Title: Re: 123 Days PF And I Think I know Why
Post by Lawrence on Jul 5th, 2011 at 3:49pm
Hey guys....
I mostly lurk now.....just had to comment on Batch's amazing post....

I see so many numbers being thrown....what are the recommended numbers for starting this regimen, and what is the maintenance recipe?


The "recipe"
10,000 IU of Vitamin D3
3600 mg of Omega 3 fish oil
how much calcium citrate?


Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jul 6th, 2011 at 10:39am
Hey Lawrence,

Good question.  I've found that keeping the proportions/ratios of this regimen's ingredients the same is key.  If we start with the critical component, vitamin D3, a maintenance dose could be 5,000 to 10,000 I.U./day, 500 mg. calcium/day is needed. 

I chose 10,000 I.U. vitamin D3 as a conservative therapeutic dose, but I know several folks who take 15,000 to 20,000 I.U./day for therapeutic reasons. 

How much vitamin D3 you take for a maintenance dose depends on your other sources of vitamin D3 with the primary source being how much direct sunlight you get on exposed skin...  Your skin makes vitamin D3 for free...  (like 10,000 I.U. in as little as 30 minutes of direct sunlight in a bathing suit with no sun block...)

Age is also a factor in determining how much vitamin D3 we need...  As we get older, we need more vitamin D3 so the maintenance dose goes up. 10,000 - 15,000 I.U./day is not unreasonable.  My wife takes 15,000 I.U. vitamin D3 a day and claims she feels much better at that dose than at 10,000 I.U./day.  At 15,000 I.U. vitamin D3 a day she runs around the house and yard like a kid again...  and she doesn't have CH...  but she is a migraineur...

Back to your question on how much calcium citrate...  One of the many properties of vitamin D3 is it works in the gut to put more calcium into the blood stream.  Accordingly, 5,000 to 10,000 I.U. vitamin D3/day will require a minimum of 500 mg. calcium/day.  That's two of the Kirkland brand calcium citrate tablets formulated with additional vitamin D3, 80 mg. magnesium and 10 mg. zinc.  The magnesium and zinc are also essential elements and are listed as co-factors in vitamin D3 therapy.

2000 to 3000 mg. Omega 3 Fish Oil should be good for both a maintenance and therapeutic dose. 

When my cholesterol, triglycerides, and BP shot up into the red zone due to a medication I was taking that had a side effect of elevating these values, rather than taking a STATIN, my doctor and I chose a low cholesterol diet and a regimen of 3000 mg. Omega 3 Fish Oil and two of the CholestOff plant sterol tablets a day.  I was back in the green in two weeks.

The best way to accurately determine your vitamin D3 requirement is to ask for a blood test of 25(OH)D, the serum level metabolite of vitamin D3 the next time you see your PCP or neurologist.  The FDA recommended levels for this test are too low.  Nearly all the vitamin D3 gurus say our 25(OH)D levels should be in the 100 - 200 nmol/L range.

As a practical guide to diagnosis and management, Dr. Peter Lewis suggests the following (25OHD levels in nmol/L) be used as a guide:

• <100 = Deficient
• 100-200 = Optimal
• 135-225 = Normal in sunny countries
• 500+ = Potentially toxic (this would require a sustained daily intake >/= 40,000 IU)

[Note: To convert to nmol/L to ng/ml, divide by 2.5]

Hope this helps.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Lawrence on Jul 7th, 2011 at 6:19pm
thanks Batch.

Title: Re: 123 Days PF And I Think I know Why
Post by Lawrence on Jul 12th, 2011 at 1:31am
Hello to all
I have been trying this anti-inflammatory regime for 5 days now.

10,000 IU of Vitamin D3
3000 mg of Omega 3 fish oil
600 mg of Calcium Citrate with zinc, mag, and d3

I have had little to no results with it so far.
I am also on 480 mg of verapamil daily.


I'll keep trying to see if it kicks in tho...

Title: Re: 123 Days PF And I Think I know Why
Post by RichardN on Jul 12th, 2011 at 3:00am
Hi Batch

  Checking in with some bad news.  Although I am still willing to give the D3 some credit for my reduced attacks (see my post on page 9 of this thread), sad to report the beast must have read it too and remembered where I live . . . he's back with dancin' shoes on . . . will post/rant on the "Cluster Specific" board.

  I did add omega 3 fish oil & started taking zinc (50mg) & magnesium (250 mg), which we had on hand . . . the multivitamin I've taken for at least five years does contain zinc (15 mg) & magnesium as magnesium oxide (120 mg) . . . . they claim the zinc is 100% daily value and the magnesium as 30%.

  Any possibility the additional zinc & magnesium may have kicked off this series of nasty attacks?  Quit both a week ago . . . he's still kicking my butt.

  I too drink plenty of coffee, tea and usually take my meds with milk, plus plenty of water.

  REALLY hate to report the above.  Six "E" tanks got me through end of May (for the year) . . . 25 tanks for June til now . . . CRAP!

  Be Safe,   PFDANs

     Richard

Title: Re: 123 Days PF And I Think I know Why
Post by ClosetCHer on Jul 12th, 2011 at 4:41pm
Batch/All,
Just wanted to drop in and give a quick update since I haven't been on the site in a number of months.

I've been taking 3,000 mg of Omega 3, 10,000 I.U. of D3 and the calcium citrate since the first week of March, 2011. I am pleased to say that since that date, I have had only 3 CHs and those were all within the 1st week following the start of the regime. Minus those 3 CHs, I've been PF for over 4 months now and enjoying every minute of it. After being chronic for nearly 3 years or so, I never thought I could be free from the beast. I get occasional shadows here and there, but those are weak and never drive me to caffeine like they previously did. This feels like a miracle!

Batch.......Being that I was chronic, is there any reason for me to STOP taking the regime at any time? Or can I continue to take it indefinitely without worries of complications, side effects, etc?  I read into the items in the regime and couldn't find anything that said I couldn't take them unless I was sick or on other meds, which I'm not.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jul 13th, 2011 at 5:52pm
ClosetCher,

Outstanding news and there's no reason to stop this regimen.  In fact, there's every good reason to continue taking it for the rest of your life...  Nothing could be better or more healthy for you... 

Our hearts, circulatory systems, brain, eyes, lungs, bones, immune system and I'm sure a lot more organs and bodily functions are loving us for taking this regimen. 

I was chronic for 6 years and went PF the second day of this regimen last October.  I'm still PF and I've taken it every day since then and so has my wife Joyce... 

She decided to up the vitamin D3 dose to 15,000 I.U. because it makes her feel better...  and she doesn't have CH...  Instead... she's bouncing around the house & yard like a kid...  I've had to up my vitamin D3 dose to 15,000 I.U./day just to keep up with her...

The vitamin D3 gurus claim 5,000 to 10,000 I.U. vitamin D3 a day from all sources is a good maintenance dose and 10,000 to 15,000 I.U. vitamin D3 a day a therapeutic dose.  If you're not getting a half hour or more direct sun a day... 10,000 I.U. is likely a good maintenance dose.

The only real way to know is the next time you see your doc, ask for a blood serum test for 25(OH)D, the metabolite of vitamin D3.  If you're between 100 and 200 nmol/L, you're dosing correctly...

If you want to cut back to a daily regimen of 2000 mg. Omega 3 Fish Oil, 5,000 I.U. vitamin D3, and 500 mg calcium (two of the calcium citrate tablets), it should work just fine... 

Take care and thanks again for the wonderful news.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jul 13th, 2011 at 7:35pm
Richard,

Sorry to be so slow in responding, but where's the calcium citrate?  Did I miss something?  You need a minimum of 500 mg. calcium/day if taking vitamin D3 at doses ≥5,000 I.U. day.

The calcium citrate in this regimen serves multiple purposes.  The two most important are it's part of a buffering system and also a co-factor with the vitamin D3.

Without the calcium citrate, your arterial pH can drop like a rock stimulating more vasodilation and that makes for a higher frequency of more severe CH.  Washing down the calcium citrate tablets with lemonade, limeade, or margartia mix should help.  All three of these are high in citric acid content.  When the calcium citrate and citric acid hit the stomach they buffer the stomach's gastric juices (Hydrochloric acid at a pH of 1.0 to 2.0) up to a pH of 3.9.  That's a log number so that makes the stomach roughly 80 times less acid. 

Lawrence, you might want to start pushing lemonade with your calcium citrate as well...  Everything else looks fine from here.

Take care,
V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by sandie99 on Jul 14th, 2011 at 4:13am
Little update from here: still happily PF. :)

It's great that other people are giving this a go. We're all different, but I hope it will work for may of us.

PF days & nights to us all,
Sanna

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Jul 14th, 2011 at 4:22am

sandie99 wrote on Jul 14th, 2011 at 4:13am:
Little update from here: still happily PF. :)

It's great that other people are giving this a go. We're all different, but I hope it will work for may of us.

PF days & nights to us all,
Sanna


That's good news Enjoy :)

Cheers
Barry

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Jul 14th, 2011 at 10:28am

sandie99 wrote on Jul 14th, 2011 at 4:13am:
Little update from here: still happily PF. :)

It's great that other people are giving this a go. We're all different, but I hope it will work for may of us.

PF days & nights to us all,
Sanna


great news from our blushing newlywed! ;)

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by godsjoy777 on Jul 14th, 2011 at 3:48pm
Hi gang,
Long time no see....I actually skipped the cycle last year.....only to have the beast return 2 weeks ago...:-(  Something like 20 years now of fighting him.  :'(

OK....I am 2 weeks into this cycle.  I work for a Physician that has recommended for all her patients to take 3000mg-4000mg of EPA/DHA.  I have only been taking 2000mgs. She also checks Vitamin D3 levels and most patients are on some form of Vitamin D3 now.  She likes to see the levels over 50 and under 100.  I have also only been taking 5000IUs of Vitamin D3......soooooooooo I will be increasing my Vitamin D3 to 10,000 IUs and double my EPA/DHA and see what happens.  She also recommends that you take the Vitamin D3 with food for better absorbtion....I will let you know what happens.

I soooooo appreciate you all who trying to find better ways to live with this beast.  I don't like being on all sorts of pharmaceuticals and O2 is the abort of choice. 

Blessings!
Karen

Title: Re: 123 Days PF And I Think I know Why
Post by Pfunk on Jul 15th, 2011 at 12:52am
I started taking this stuff on the 14th of June and am happy to say that I have been relatively PF since. I have only had 2 major hits since. Both times were on days when I either skipped by accident or, like last night had a stomach bug and really couldn't keep anything down. However, once I started back, I could definitely tell a difference. This stuff realy works. For the first time in as good while, I have not missed one day of work while in cycle :). Much luv and PF wishes to all.

Pfunk 8-)

Title: Re: 123 Days PF And I Think I know Why
Post by Jair Crawford on Jul 20th, 2011 at 12:40am
Batch I have a question, not about CH, but about Vitamin D3 specifically.

I have heard SO many different things about what the toxic dose is, that I don't know what to believe. I'm taking 2000 IU a day. Here I read that you're fine as long as you don't take 40000 IU a day or more. But then some people say that if you take like, 1000 IU or even 500 IU, that you must get your blood checked to check your levels every month in case you don't overdose.

So... what exactly IS the limit? Is there even a limit? And why is there so much inconsistencies with regards to what a safe amount of D3 is? lol

I'm taking D3 just because I've read that it's really really good for you. And if I can safely take more than 2000 IU a day, then I will gladly do so. But I've heard so many things that I'm a little bit wary of doing that. lol

Title: Re: 123 Days PF And I Think I know Why
Post by sandie99 on Jul 20th, 2011 at 4:13am
Thanks Barry & Joe! :)

Btw, I don't know how to blush... ;D

PF days to us all,
Sanna

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jul 21st, 2011 at 7:00am
Hey Jair,

Good question.  From what I've learned... unless you're a cotton picking roofer or a life guard...  i.e., someone who works for a living outside in direct sunlight...  you're likely vitamin D deficient.

I'm not a doctor so I go to the experts in this area with questions like this.

Dr Peter J Lewis, an Integrative physician in Australia is one of my favorites.  I've been in contact with him on the anti-inflammatory regimen for cluster headache and specifically on the topic of vitamin D3 maintenance and therapeutic dosing.

The simple answer is 5000 to 10,000 I.U. is a good starting point as a maintenance dose of vitamin D3 from all sources and 10,000 I.U. of vitamin D3 from all sources is a good starting point for a therapeutic dose.  Taking daily doses of vitamin D3 higher than 15,000 may not be helpful for some of us as excess oral vitamin D3 is excreted in the bile.

Again, these are starting points.  I know several folks including myself who use a daily maintenance dose of 10,000 I.U. vitamin D3.  My wife takes 15,000 I.U. vitamin D3 daily with no adverse effects...  She claims it makes her feel better...  The only problem I have with her taking that dose is it gives her so much energy it's difficult for me to keep up with her.

The only real way to determine optimum dosing is to see your doctor and have your blood tested for 25(OH)D, the vitamin D3 metabolite. 

As a practical guide to diagnosis and management, Dr. Lewis suggests the following (25OHD levels in nmol/L):

• <100 = Deficient
• 100-200 = Optimal
• 135-225 = Normal in sunny countries
• 500+ = Potentially toxic (this would require a sustained daily intake >/= 40,000 IU)

[Note: To convert to nmol/L to ng/ml, divide by 2.5]

As Dr. Lewis treats vitamin D3 deficient patients and monitors their 25(OH)D levels regularly, he comments, "It is my experience that an ongoing dosage of 5,000-10,000 I.U. of cholecalciferol daily may frequently be required to maintain optimal 25(OH)D levels, especially in obese, elderly and darker skinned patients."

I've attached a hand out Dr. Lewis sent me last week that he provides to his patients that covers much of this.

The Vitamin D Council recommends that optimal health is supported by blood levels of 50-80 ng/mL (125-200nmol/L) as identified in a 25(OH)D3 vitamin D blood test.   Get this test along with a regular blood electrolyte (chem panel) test to make sure your calcium level is ok then repeat these tests after a month of higher vitamin D3 dosing to ensure dosing is sufficient. 

The vitamin D3 council also recommends calcium supplements containing magnesium and zinc be taken when supplementing with vitamin D3.  From my experience, 500 mg. to 1000 mg. calcium is a reasonable dose.  I find the calcium citrate form is well tolerated and easiest on the gut.

You can find a lot more information on vitamin D3 at the following links:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Hope this helps.

Take care,

V/R, Batch

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=VITAMIN_D_-_Dr__Lewis.pdf (186 KB | 14 )

Title: Re: 123 Days PF And I Think I know Why
Post by gardengal on Jul 21st, 2011 at 11:13am
I do landscaping for a living all summer and would think I get enough vit D. Admit I only took the vit d and fish oil for 2 days, but noticed nothing. I was a little afraid of overdosing too.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jul 21st, 2011 at 2:28pm
Gardengal,

Unless you do your landscaping in a bathing suit without any sunblock...  in which case, please come help me... you may not be getting as much natural vitamin D3 from UVB as you think.

Dr. Lewis dismisses claims that folks living in Northern Australia get enough natural vitamin D3 because they live so close to the equator...  He sees folks with farmer's tans that still test below 100 nmol/L 25(OH)D.

The 10,000 I.U. vitamin D3 I took along with the Omega 3 Fish Oil and calcium citrate as a therapeutic dose for my cluster headaches and still take today is a conservative dose... 

Per my post above listing the optimum levels of 25(OH)D as suggested by Dr. Lewis, most of us would need to take & make ≥40,000 I.U. vitamin D3/day for up to three months before our 25(OH)D would reach the potentially toxic level ≥500 nmol/L of 25(OH)D.

The only way to know for sure is to see your doctor and have your 25(OH)D level checked...  ask also for the chem panel & cbc test so you can make sure your calcium, other key minerals and electrolytes are in the normal range. 

This same test will also give you cholesterol and triglyceride levels...  If you've been taking the Omega 3 Fish Oil and vitamin D3, your cholesterol and triglyceride levels will likely be in great shape.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Jair Crawford on Jul 21st, 2011 at 2:35pm
Thanks for the info, Batch. The main reason I asked is because a friend of mine used to take 10,000 IU a day but then his doctor was like "DUDE what're ya doing?!? That's too much" and he took his dosage way down. lol I guess not all docs know the potency level of D3. I told one friend of mine who gets migraines about your regimen, and he said "Dude, that much D3 will kill ya." I guess more people need to learn that vitamin D3 is not as potent as they might think.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jul 21st, 2011 at 5:32pm
Jair,

Send your friend the pdf hand out file prepared by Dr. Lewis that I attached to my reply to your post on what's a toxic dose of vitamin D3. 

Dr. Lewis is one of a growing number of physicians who recognize the importance of maintaining healthy levels of vitamin D3 that are significantly higher than the FDA's outdated MDRs.

The Vitamin D Council at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE covers this topic best with the following statements: 

"Can too much vitamin D be harmful? Yes, it certainly can - though anything can be toxic in excess, even water. As one of the safest substances known to man, vitamin D toxicity is very rare. In fact, people are at far greater risk of vitamin D deficiency than they are of vitamin D toxicity."

and

"Toxic doses

What exactly constitutes a toxic dose of vitamin D has yet to be determined, though it is possible this amount may vary with the individual.

Published cases of toxicity, for which serum levels and dose are known, all involve intake of ≥ 40000 IU (1000 mcg) per day. 1 Two different cases involved intake of over 2,000,000 IU per day - both men survived.

Serum levels: upper limit and toxicity threshold

Upper limit for a substance is the amount up to which is considered safe and without risk of adverse effects in the majority of the population.

Toxicity threshold for a substance is the amount beyond which over-saturation occurs and symptoms of toxicity manifest.

These values for 25(OH)D are as follows:

    Toxicity threshold level - 200-250 ng/mL (500-750 nmol/L)
    Upper limit - 100 ng/mL (250 nmol/L)

The large range between 25(OH)D’s upper limit and its threshold value implies a degree of safety at serum levels up to 100 ng/mL (250 nmol/L), since concentrations twice this amount have yet to ever be associated with toxicity.

In animal models, serum concentrations have reached as high as 400-700 ng/mL (1,000-1750 nmol/L) before toxic effects (severe hypercalcemia) were observed."

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Lawrence on Jul 22nd, 2011 at 12:05am
I've been on this regimen for about 1 1/2 weeks.

It took awhile for it to get into my system.

I had to increase my vitamin d3 to 15000 IU's a day.

Now, my 3 hits a day have turned into a strong daily shadow.

so there is finally some progress for me, using this. thanks Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Ken_DFA on Jul 22nd, 2011 at 11:43am
Batch,
 
Just wanted to quickly chime in and relate my experience using your regimen.  First off, THANK YOU for your efforts to find new avenues for treatments.  You're helping to improve the lives of others and that is incredible.
 
This year's cycle caught me totally by surprise.  I started the regimen approximately one week into the cycle.  At the same time, my order from Iamshaman  came in and I began dosing with RC on a weekly basis.
 
From the point where I started busting and taking the daily regimen, the severity of my hits dropped by about two K's.  Headache frequency decreased by roughly 25% with each subsequent week.  I went from getting hit twice a day to getting hit once a day and at this point (fifth week in), I haven't gotten a true headache in about 8 days. 
 
Backing up a bit, I cluster-busted my last cycle back in '09 using RC seeds and experienced the same decrease in headache frequency with weekly RC doses.  What I did not experience in '09, however, was the drop in headache intensity.  Even though the hits were dropping in frequency as time wore on, the intensity of the headaches continued to be in the K8-9 range - right up to the end of the cycle.
 
I therefore attribute this cycle's drop in headache intensity to the effectiveness of your regimen.  Likewise, I attribute the decrease in frequency of hits to the RC seeds, because I experienced the same thing in '09. 
 
That's just my gut feeling.
 
So while the regimen didn't instantly kill my headaches as it has for others posting on here, I will definitely put this into the "works" category and start the regimen again as soon as a new cycle begins (hopefully, not for another two years!!!!!).  The ability to knock a hit back from K8 down to a K6 is very significant as far as I'm concerned.
 
With much gratitude,
-Ken

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jul 22nd, 2011 at 12:48pm
Hey Lawrence,

Thanks for the feedback...  Hopefully the constant shadow will fade to a completely PF response in a week or two.

From reports like yours, it appears that some CH'ers don't respond to this regimen as fast as others.  In stead of a marked reduction in CH frequency and severity or complete remission after 48 hours...  some CH'ers are taking one to two weeks to get the same response.

Exactly why this happens is still unknown, but from the info exchange I had with Dr. Patterson in Australia, it appears the extra time is needed to build 25(OH)D3 levels in the fatty tissues to a sufficient level to allow serum levels to remain constant at a therapeutic level. 

Dr. Lewis also indicated it can take up to a month for 25(OH)D3 levels to build from >100 nmol/L to 150-200 nmol/L when dosing at 10,000 I.U./day.  Accordingly, this would also explain why some CH'ers who skip a dose during the first few weeks experience breakthrough cluster headaches or shadows.  This might also explain why it took a vitamin D3 dose of 15,000 I.U./day for you to start experiencing the benefits of this anti-inflammatory regimen on your cluster headaches.  Once you reach a totally PF response, you may be able to drop back to 10,000 I.U./day as a maintenance dose.

My wife takes 15,000 I.U./day without any adverse effects...  She claims it makes her feel better with a lot more energy.

Thanks again for the update.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jul 22nd, 2011 at 2:14pm
Hey Ken,

Thank you for the feedback and analysis of your response to the anti-inflammatory regimen.  I'll jump to the point and wager you will not experience a CH cycle next year if you stay on this regimen.  I intend to stay on it for the rest of my life.  My wife also takes it and she doesn't have CH.

At less than 20 cents a day, >80% efficacy and no adverse side effects, it's good for the eyes, brain, bones, heart, lungs...  you can't say that for any of the other CH preventatives...

If you read through my reply to Lawrence, you'll see that it can take a couple weeks and sometimes a little longer build the serum concentration of 25(OH)D3, the vitamin D3 metabolite, up to a therapeutic level.

Hope this helps.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by stel on Jul 22nd, 2011 at 6:23pm
I'm on day 5 of this plan and so far no results - still getting 3 or 4 hits at night and occasional, less painful CHs in the day. 

I did want to mention something that my husband's doctor told him recently. He said that he recommends that people only take fish oil from Norway. He said that many fish oil supplements are now coming from China and they can be suspect...sometimes not fish oil at all. 

The person who posted about having an adverse reaction made me think about this. 

I'm still hopeful this will work for me! Stella

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jul 23rd, 2011 at 6:54am
Hey Stella,

Thanks for the post.  I share your aversion to food stuffs coming from China...  I did a good bit of research on the source of Omega 3 Fish Oil ingredients.  It turns out that most of the processed fish oil sold here in the US for use in the molecular distillation processing that yields Omega 3 Fish Oil comes from sardines, herring, and anchovies caught off the coast of Chile...

Nature Made is up front on it's assay for heavy metals listing it on the label and as a US firm...  I have no problem with their Omega 3 Fish Oil.  I take it daily...   

From my earlier posts on this page, you'll see that it can take some CH'ers a week or two and for others, as much as a month or two before the beneficial effects of this anti-inflammatory regimen start to manifest.   

It's still a theory at this point and like many of you, I'm still learning about this regimen, but until we get some before and after blood tests, it appears that CH'ers, who have very low 25(OH)D levels, tend to take longer to experience the benefits of this regimen at a dose of 10,000 I.U. vitamin D3/day. 

As 25(OH)D, the metabolite of vitamin D3 is fat soluble and is stored in the fatty layer under the skin, it appears the fat absorbs much of the initial dosing of the serum concentration of 25(OH)D and it doesn't build up to a therapeutic level in the serum to affect CH patterns until the fatty layer is nearly saturated.

Dr. Lewis points out in his paper  "Vitamin D Deficiency: more on diagnosis and management" that I've posted several times in this thread "...For a patient with an initial blood level of 50 nmol/L, a daily dose of 10,000 I.U./day would be required to raise their 25[OH]D level to about 150 nmol/L (i.e. the middle of the optimal range) over 3 months."

A few CH'ers who have discussed this regimen with their physician and had their 25(OH)D levels tested, reported they've been prescribed 20,000 I.U. vitamin D3/day to speed up the process of elevating their serum 25(OH)D.

Once you've been on this regimen for a month or so, the half life of 25(OH)D is roughly three weeks.  What that means is after a month, if you skip/miss a dose, it's no biggie...

Hope this helps and hang in there.  This is a very healthy regimen with more health benefits that just controlling your CH.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by stel on Jul 25th, 2011 at 12:20pm
Batch et al;
Just a quick update. The night after I posted that I'd not seen any let up as yet, I went through a night with no hits at all!  I rejoiced, not caring if it was the regimen or the end of this cycle.

So the next night I celebrated/tested it, and had a strong rum cocktail before dinner. I got three mega-hits before midnight.   :(

Last night I skipped cocktail hour and had one glass of white wine with dinner - no headaches all night!  :D

So perhaps it's working or it's the end of this round...I'll stay on the regimen for awhile and then go off and see what happens.  Thanks, Batch!

Title: Re: 123 Days PF And I Think I know Why
Post by Brew on Jul 25th, 2011 at 1:00pm
You're awfully brave to do the booze test one day after a pf day. Most usually wait two weeks.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jul 25th, 2011 at 3:15pm
Hey Stel,

Thanks for the feedback.  If you'll do a little reading on the benefits of vitamin D3 and Omega 3 Fish Oil, you'll find there are a lot of very good reasons to continue with this regimen daily for the rest of your life...  That's what I'm doing and so is my wife...  and she doesn't have CH.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Skyhawk5 on Jul 26th, 2011 at 2:40am
I sitll can't believe it's true. I have been applying Batch's advice for a few years now. I have the best O2 setup I can afford and it works wonders.

When I read about the D3, I thought, how can this work. Well after I had 3 wakeup calls to O2 in the month of May, me and my wife knew it was coming.

I started the program on May 29, 11, and have not been awakened to a CH since. For the last 6 yrs I have had Summer time cycles of 6+ mnths.

Not this Summer !!!!!!            , Don

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Jul 26th, 2011 at 5:39am
Hi all

Just an update.  I started on the Anti inflammatory regimen around Jul 1st. I have had attacks all 2011 with some in-between PF weeks.  June being particularly evil.

The effect was significant after a couple of days.  I have not been completely PF, but the frequency is radically lower.  KIP scale mark too. 

I have passed the beer test several times. 

Yesterday I had an appointment with my neurologist and we talked about the D3 coctail.  She got very interested. I got a prescription for 5000 IU units. In Norway the strongest OTC units are 400 IU - meaning I have to swallow 25 tablets every day  :-/ No more of that now :-)

Bottom line: I'm quite convinced this regimen works for me.

I take
3000mg Fish Oil (70% Omega 3), 500mg Magnesium citrate, 500mg Calcium, 10.000 IU D3, 1500mg Taurin, 25mg Zinc

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Jul 26th, 2011 at 8:57am
Wow Zeit, that's fantastic news. This cocktail is really starting to get people's attention!!! :o

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jul 27th, 2011 at 9:47am
Rune, Don,

Awesome news!  I'm very happy for both of you... 

I know how you're feeling and what it's like to wake up from a pain free night's sleep wondering if you're really done with the beast...  You look over your shoulder with a grin on your face like a kid who just found a $20 dollar bill on the ground... 

After a few weeks... you'll begin to realize this regimen is really working and crack an even bigger smile.  From then on you'll just keep on trucking without looking back...  It's a wonderful feeling...

I thought hyperventilating with 100% oxygen was a game changer when I developed the initial procedure for this method of oxygen therapy in 2005 to abort my CH.  It gave me back a quality of life and sense of control I didn't think possible with cluster headaches...  In 2008 we conducted the informal pilot study where more CH'ers tried it with similar results so I knew it wasn't just a one-off lark...  it really works.

I know nothing lasts for ever...  but at this point,  I'm declaring Game Over with my cluster headaches thanks to the anti-inflammatory regimen... 

I've been PF since last October and I'm still on this regimen...  I intend to stay on it for the rest of my life...  A lot of other CH'ers are reporting similar results with this regimen so I'm not alone and this isn't just a one trick pony either...  It works!

I've been keeping a running tally of the results posted here at CH.com, sent to me by email and PM as well as reports from the good people and fellow CH'ers at ClusterBusters who have also given this regimen a try. 

The significant finding so far is the efficacy of this anti-inflammatory regimen is a function of time...  Some CH'ers reported a favorable response in two to three days after starting this regimen while others reported it's taken two to three weeks and longer to achieve the same favorable response.

Although CH'ers who took the complete regimen had the most success, vitamin D3 appears to be one of the key ingredients and it's clearly the long pole in the tent of this anti-inflammatory regimen.

In my exchange with Dr. Peter Lewis, MD an Integrative physician who specializes in the treatment of vitamin D3 deficient patients, he indicated that based on his experience treating vitamin D3 deficient patients, it can take up to three months at a dose of 10,000 I.U./day vitamin D3 to elevate a vitamin D3 deficient patient's 25(OH)D from 50 nmol/L  (deficient) up to 150 nmol/L (middle of normal range).

The fact that this regimen is working well for both episodic and chronic CH'ers is further proof of its efficacy.  I also expect the CH'ers who have not had an immediate response to this regimen will start experiencing a reduction in the frequency/severity of their CH if they continue taking it.

I hope to have an on-line survey up on the Internet in a few weeks for the CH'ers who've tried this regimen and will post the link when it's ready.  Capturing this data in a standardized format will help dig the fly crap out of the pepper...  We'll need the cleanest results possible in order to help generate the funding for a formal clinical study.

Take care,

V/R, Batch



Title: Re: 123 Days PF And I Think I know Why
Post by Lauren17 on Jul 29th, 2011 at 10:15am
Lucas has been pain free since his cycle in the fall- a few twinges here and there, but no new cycle materialized, and nothing that could really be considered a shadow even. His cycles bounce around, sometimes it's 6 months, sometimes it's 2 years between, so it will be a long time before we know for sure with this, but we'll keep at it. I'll keep updating periodically!

Thanks!

Title: Re: 123 Days PF And I Think I know Why
Post by julieknfla on Jul 31st, 2011 at 8:20pm
I have been checking in to see how others have fared with your regimen, Batch, and I will always credit my breaking of my last CH cycle with this regimen. Being overly cautious, I lowered my intake to 2,000 Iu of D3 a day a month after being PF, and am still taking the Calcium, magnesium and fish oil-and feel great!!  I am looking forward to your survey. Would be awesome to get a real trial where even more people could be helped.

Title: Re: 123 Days PF And I Think I know Why
Post by godsjoy777 on Aug 1st, 2011 at 8:47am
Hi Everyone!

I am 5 weeks into a "usual" 12-16 week cycle....Thank you Batch et all for all the info on more natural treatment.  Last cycle I read up on Batch's research on Hyperventilating (sp) on the O2 rather than just sucking at 15 liters.  I bought a higher regulator which came with the bigger bag to hold the precious O2.  I just got the part about STAYING on the O2 for at least 15 minutes rather than just getting the hit taken care of.  I think this has helped with the rebound hits all night long.  I only had one right as I was going to bed and one more 4 hours later....This sure beats one every hour and a half!!!  This cycle I have been reading up on the Vitamin D3 and Fish Oil....Although I do take both, I have started to ramp it up.
I will keep you posted as to my success in beating this beast earlier in cycle.  I sure do love all you guys....and appreciate the support.
Dallas/Fort Worth would be a great place to have another Cluster meeting.....I met a few of you at the last meeting in Dallas....C'Mon back down here...   ;)

Blessings!
Karen

Title: Re: 123 Days PF And I Think I know Why
Post by Jenny G on Aug 4th, 2011 at 6:49pm
Day 3 of Batch's regime.

I had my first PF night last night.  :D
Not even any shadows today.

According to my last 6 cycles, this should be "hell week" for me with 5-6 headaches a day at a k8-10. I noticed an improvement almost immediately with duration of headache, "K" rating, and frequency of headaches.

I THANK YOU "Batch" for reading one of my posts on this forum and taking the time to send me a personal email (that was so very cool of you). I may have otherwise passed right over this valuable recipe.

I will report back in a few days and changes/ success.
PF days & nights to all of you! I hope to be another success story

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Aug 4th, 2011 at 7:47pm
I THANK YOU "Batch" for reading one of my posts on this forum and taking the time to send me a personal email (that was so very cool of you). I may have otherwise passed right over this valuable recipe.

Yeah....he does that  alot. ;)

Great news Jenny, senidng hopes and vibes it continues for you.

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 5th, 2011 at 4:01am
Hey Jennifer,

Thank you for the kind words...  I'm glad you though enough about the ant-inflammatory regimen to give it a try and so very happy you responded so well to it. 

It's success stories like yours that will clue more CH'ers into finding out first hand just how effective this regimen can be.  Thank you.

Based on the feedback I've received so far, I'm very confident you'll remain pain free.

Take care and please keep us posted. 

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Yan on Aug 5th, 2011 at 11:32am
This is like my 4th time trying this regimen since January, and I will try to stick to it more than 5-6 weeks..... :)

This time, I switched brand of vitamin D.......

Last night was the first time since March that the beast didn't woke me up after 1.5 - 2 hours of sleep..... I woke up to a start of an attack 5 hours after going to bed.....that felt so strange.... :)

I started Topamax about a week ago (added to Verapamil and Divalproex), so I do not know for sure the vitamin D is helping me or not....

Title: Re: 123 Days PF And I Think I know Why
Post by Jenny G on Aug 5th, 2011 at 4:48pm
ANOTHER PF night! Woo hoo. No shadows today..nothing.
I feel amazing :)
xoxo

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 5th, 2011 at 9:08pm
Hey Jennifer,

Thank you for the update.  It's a wonderful feeling isn't it.

The important thing now is stay on this regimen.  It's not a cure.  That said, I think you'll find this regimen has other healthy benefits after a few more weeks that will convince you to stay on it. 

My wife started taking it when she saw what it was doing for me weeks after it stopped my CH.  She feels better, sleeps better, and has more energy.  She bounces around the house and yard like a kid again. 

When you look at all the other potential health benefits from taking this regimen, it's a no-brainer...  We're on it for life.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by godsjoy777 on Aug 8th, 2011 at 12:00am
Still on my 4000 IUs of Fish Oil, 15-20000 IUs of Vitamin D, Calcium Citrate and lemonade....Been on it about a 7-10 days ( I'll have to check my calendar).  Still getting about 3 hits per night....Still trying to stay on O2 longer (its hard to fight sleep when the pain leaves).  Yesterday was particularly hard as I was getting hit in the middle of the day at a family party about an hour from home.  I didn't bring my O2 but took a Teximet.  It worked but made me fool so weird and not so good the rest of the day.  Still waiting on my Sansert to arrive....sigh.  I have to fly wo Mississippi next weekend with my husband and not looking forward to it.  He is performing a wedding for some friends.  Fortunately the best man lives here and has volunteered to take my O2 with them as they are driving instead of flying.  Such a hassle to do anything or go anywhere.  I guess that is why I usually stay home during this season.

Sorry for the whining....It used to be much worse back in the first couple of years when I didn't have O2 and didn't know what these horrible things were....I've come a long way these 20 years worth of the beast and I have learned most of what I know from you wonderful people...Thank you!
Blessings y'all
Karen

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 8th, 2011 at 9:51am
Hey Karen,

Please believe me, I know what you're going through.  I went through a similar scenario July - September of last year with airline travel to Zurich, Hamburg, Reno, Seattle and Ketchikan, Alaska. You have the advantage of already starting the anti-inflammatory regimen so have a leg up on what I was going through.  I got nailed on nearly every flight...

What I'd suggest at this point is hang in there and don't let CH change your plans...  You'll get through this one way or another.  The first thing I'd do is have my blood tested for 25(OH)D levels.  This will let you know where you stand with respect to how much longer it's going to take for the anti-inflammatory regimen's vitamin D3 to achieve a therapeutic level of 25(OH)D.

The second thing I'd do is start on an anti-inflammatory and alkaline forming diet.  The following links will point you in the right directions.

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I'd also avoid food stuffs containing gluten and peanuts until you get your CH totally under control.  While you may not be having a noticeable allergic reaction to these food types with clear or apparent symptoms, it's still possible you're having a reaction and although low, it's high enough to affect the frequency and severity of your CH.

Finally, I've found that ordering oxygen cylinders to have them available at travel destinations is easy and comforting.  Between LifeGas - OxyTravel™ and Apria I've had oxygen cylinders waiting for me at all my travel destinations across Europe, Alaska and here in the lower 48.  The important thing and a MUST... is to have a copy of your Rx for oxygen therapy and that it states it is for your CH, so you can fax or scan to pdf and email to the provider. 

I also ask for the aluminum M60 or aluminum M-size cylinders.  At 23 lbs, the aluminum M60 is light enough to carry from room to room and they hold 1700 liters of oxygen so are good for 8 to 9 aborts. The aluminum M weighs in at 41 lbs so is still luggable, but with a capacity of 3450 liters, it's good for up to 20 aborts...

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Taking my oxygen regulator and mask through TSA security is usually event free.  I tell the TSA attendant at the security check point there's an oxygen regulator in my carry-on bag as I push it towards the the X-Ray machine. They may want to look at it so I keep the regulator and mask in ziploc bags on top if they want to open the carry-on bag.

That leaves the actual flights with the inevitable CH that hit.  Expect them to occur and plan accordingly.  You've got the fast acting oral triptans, I carried a nasal spray applicator for each leg of air travel. I also alerted the flight attendants while boarding that I'm a cluster headache sufferer and will need a couple glasses of ice and an ice bag when one hits.

I've also found that hyperventilating with air at forced vital capacity tidal volumes can help.  It won't stop the CH, but it can help hold the pain in check and keep it from becoming a head-banger.

With luck, your CH will start responding to the anti-inflammatory regimen making most of the actual travel preparations a secondary safety net.

Take care and please keep us posted,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Mike NZ on Aug 8th, 2011 at 4:15pm
I've found flying to be a time when I've never had a CH or even shadows, so it's a time I look forward to. I've done 59 flights so far this year, with this week being only the second one this year I've not flown.

Does this make it count as a preventive for me?

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Aug 8th, 2011 at 4:29pm

Mike NZ wrote on Aug 8th, 2011 at 4:15pm:
I've found flying to be a time when I've never had a CH or even shadows, so it's a time I look forward to. I've done 59 flights so far this year, with this week being only the second one this year I've not flown.

Does this make it count as a preventive for me?


Damn....It'd sure make me a frequent flyer! ;D

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by godsjoy777 on Aug 10th, 2011 at 8:37am
Thanks again y'all for your tips and support.  The flight I need to be on will only be about 1 1/2 hours....not a biggie and daytime is "usually" ok for me right now anyway.  I have friends bringing the O2 tanks and I am still waiting on the Sansert to come in the mail....Again....I could kick myself for not trying to order it sooner.  I am saving my precious Trex for the weekend that we are out of town and then maybe the Dr will give a few more samples...

During one of my hits last night I was thinking about a medical shake mix we have at the office called InflameX....Supposed to help with inflamation....gonna try it as I'm on the ramped up Vit D and Fish Oil already....I DO know I have inflamation due to a Bioimpedence test that shows a lot of Extracellular water (inflamation) in my system.  Along with trying to stay on high alkaliene (sp) foods....and PRAYER....

Batch....I have access to my medical file at work and I will look at the last Vitamin D lab result....Pretty sure it was ok....but I have ramped up the amount anyway.

Blessings!
Karen

Title: Re: 123 Days PF And I Think I know Why
Post by cyph on Aug 10th, 2011 at 4:36pm
Well, it may be premature to present my info, but here it is.

I'm a 38 year old male and a few  weeks ago I caught a sinus infection accompanied by 4 days with a fever.

After fighting it off and being symptom free for about 3 days, I woke up 9 days ago at 3:30 AM with a headache that I would discover had all of the hallmarks of a cluster attack.  I knew nothing about it at the time, but I'd be driven to visit my doctor after 6 straight days (this past Sunday) of H/A at midday always focused on the same side and behind my eye.

Still unaware of CH, I was relieved when the doctor prescribed me an antibiotic, tylenol with codeine and a muscle relaxer as he was under the impression that the H/A was a complication due to the sinus infection.

Well, Tuesday and 2.5 days into my antibiotic with the painkiller and I'm having the worst episodes yet.  Monday I suffered two debilitating hits in quick succession that took me near 6 hours to recover from.  And yesterday, Tuesday, I tried to go to work and was hit there earlier than usual, 9AM instead of around noon.

In light of this lack of success (worsening, in fact) with the prescriptions, I looked Monday online to see if my symptoms were more indicative with migraines.  While I've not been formally diagnosed, with some dismay I discovered that the symptoms coincide with CH.  And, of course, that's what led me to this forum.

Well, desperate to try anything that I could on short notice as the earliest neuro appt I could get was for next Friday, I looked into this thread and others on abortives.  So starting yesterday, I added a D3 supplement.  I only had about 1500IU I could take last night and this morning, but have picked up the 5000IU tabs today.  I took one with calcium at lunch and will start a regular 10,000IU with calcium for short term efforts.

I've felt the typical tugging at my eye (shadows as I've learned) as a relative constant today.  And on a couple of occasions that it's threatened to spike I have managed to fend off the attack by downing black coffee (probably 5 cups today) but I'm encouraged by the ability to actually have a pain free day (knocks wood) thus far as I'm more than 24 hours removed from my last full-blown attack.  My first in 9 days  :)

Thanks for the info here and I'll probably find myself lurking these forums more often.

Title: Re: 123 Days PF And I Think I know Why
Post by rosie89 on Aug 11th, 2011 at 3:11am
Hi,

My name is Rosie and me and "THE BEAST" are brand new friends. My fiance just started getting the CH's this month- he's 29. We were scared poopless for a couple weeks because we didn't know what they were, then on his first KIP-9/KIP-10 I took him to the ER. They referred him to the neurologist a week later (with only 15 percocet to hold him over until he was seen- it was TERRIBLE) and then he was diagnosed.
He's now on the prednisone taper and taking indomethacin 3 times a day starting today as preventatives, and percocet as needed. Doc didn't want to prescribe us O2 because it's "inconvenient", but after lurking this site for a couple days, the neuro may be getting a bossy fiance call from me soon to get that script in.  >:( ADDITIONALLY, he got the imitrex injection kit ($190!!!!!! for TWO injections!!! Sorry, I'm new to this and feel the need to whine to people who know what I'm talking about. Whining over with now, promise.) and had his first shot today at a KIP 8. It helped for a little bit.

SO, onto the topic.

I will be starting him on Batch's regimen promptly in the morning. He's actually ASLEEP right now and has been for a couple hours (knock on wood). I'm gonna start him with 10,000 IU VD3, 3600mg fish oil and the Calcium citrate with some lemonade. I will update in a couple days and see how it goes.

This is all very scary because since this is his first experience with CH's we have no idea when they're due to "let up", if he's chronic/episodic, what to expect at all. I'd rather try to scare the beast away with a bunch of vitamins than have to find out the hard way all the excruciating details. I feel so helpless watching him in this much pain.

Sorry for the novel. Needed to vent.

PS- please let me know if I am inadvertantly poisoning him due to some obscure drug reaction. It'd be nice to know, as I'd like him to live.  ;)

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 11th, 2011 at 6:35pm
Karen, Copy.

Cyph, Thanks for the feedback...  Hang in there and please keep us posted.

Rosie, Great post!  Physicians who refuse to prescribe oxygen then give a lame a$$ excuse that it's too "inconvenient" or not effective need some remedial CME...  Continuing Medical Education.

If you buy your own high flow rate regulator, I use a 0 to 60 liter/minute unit from Flotec, and have your own non-rebreathing mask like the O2PTIMASK™ kit with 3-liter reservoir bag for $37.50 here at the CH.com Store at the left, the cost/abort with a $30 M-size oxygen cylinder is $1.00 tp $1.50 before insurance.  That beats the heck out of $90/injection before insurance or splitting the dose in thirds.

Hang in there and check your PM...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Jenny G on Aug 13th, 2011 at 1:31pm
Update here, I am about 1 week into the D3 vitamin therapy. My D levels did not test low according to my doctor, I am at 63 (even though Batch's research says 100 is optimal). I am taking the vitamins therapy anyway.

While the attacks have not stopped completely I can go about 48 hours without anything, not even a shadow. The CH that I do get are never more than a kip 2-3 and are babies compared to where I would normally be at during this point in my cycle.

I am at just about 3 weeks in, my cycles have typically lasted 3-4 weeks. I am hoping they are almost gone as I seem to be in the "tapering down" part of the cycle.

This cycle (knock on wood) has been the easiest to deal with in 20 years. I definitely believed without Batch's help I would have had an awful last week.

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Aug 13th, 2011 at 3:44pm
Fantastic news Jenny. I'd keep with Batch's routine even if the beast is done with you this go round. It would be interesting to see if you can skip a cycle with it. Hoping he leaves you in peace for a while.

JOe

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Aug 14th, 2011 at 8:00pm
Many thanks to Batch for being the guinea pig and creator of this natural regimen that appears to be very helpful to many who've tried it. 

I've just finished reading all 13 pages of this thread and am eager to try it beginning next Friday AKA Payday. ;)

My only concern is that a cycle may begin before a month or so where my blood levels would become therapeutic, resulting in me having to start a Pred taper with Verapamil.

One other concern is weight loss I believe I read somewhere in this 13 pages.  I've just lost 60 lbs just in the last 5 years and am too thin due to pain pills for spine injury.  Certainly do not need to lose more weight!  What exactly from this regimen caused weight loss?  I might want to avoid that?!

Thanks again Batch!

PS  We should sticky this thread.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 15th, 2011 at 12:35am
LV,

Thanks for the kind words...  and don't worry about the weight loss unless the extra energy from the vitamin D3 results in your running a half marathon a day or training for Iron-Man competition. 

Moreover, why wait until payday?  Smith's Market at the corner of West Tropicana and S. Jones has some small bottles of 5000 I.U. vitamin D3, Omega 3 Fish Oil, and Citracal Plus that will work just fine…  If you venture further West to Costco at 801 South Pavilion Dr, you can pick up a two-month's supply of all three ingredients for less than $20.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Aug 15th, 2011 at 1:51am
Batch you are so cool  8-)

When you next visit family look me up and we'll definitely enjoy great conversation and laughs over a few cold brews.

I didn't realize all 3 were so inexpensive.  Off to Costco tomorrow, I live right around the corner.

Title: Re: 123 Days PF And I Think I know Why
Post by Radar63 on Aug 15th, 2011 at 3:31pm
Hi Batch

Ian here, I was on here about two months ago.  Just reporting in that I am having my first completely pain free summer for 15 years.  Still taking the regimen, if I forget or try backing off I get some really small almost unnoticeable but tell tale shadows.  Being able to function and enjoy a summer, we are even thinking about going on holiday next year.  Have been trying to see a neuro to pass on the info but they are to busy unfortunately, so have emailed them.

Thanks again mate, you have changed my life.

Ian

Title: Re: 123 Days PF And I Think I know Why
Post by Dixie Angel on Aug 15th, 2011 at 9:41pm
Just picked up my Vitamin D3, Omega 3 Fish Oil caps, and calcium citrate tablets tonight at the store. Will be starting the regimen in the morning. Wish me luck. I really don't want to start on the Verapamil and the Prednisone if I can stop these clusters a more natural way... :)

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Aug 16th, 2011 at 6:48pm
Hi
Did some search & read adn came across this short Danish blog. "Cluster Headache Cure": START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE. 

It seems to provide some scientific explanation on why D3 has this marvelous effect.  Apparently there is a correlation between high production of Nitric Oxide (NO) and cluster.  Among other things, vitamin D3 inhibits the NO production.


Title: Re: 123 Days PF And I Think I know Why
Post by rosie89 on Aug 16th, 2011 at 7:42pm
Hi All!!

Update to the fiance's situation...

He has had shadows since he started the regimen, every day. They are definitely better though, only go up to a pain level of 2 or 3, VERY occasionally a 4 comes around. I have not seen the beast at all since he started the regimen, though he started it on the same day as the Prednisone taper. He still has about a week left of the Prednisone, so we'll see what happens once he is off of it. I'm trying not to get excited yet until we know if it's the vitamins or the Prednisone that is making the difference. I will definitely keep you updated though!

Title: Re: 123 Days PF And I Think I know Why
Post by godsjoy777 on Aug 17th, 2011 at 3:35pm
Wow...That article on the role N.O. plays in clusters in very interesting...

I have been on D3, Fish Oil, Calcium Citrate and Magnesium for about 2 weeks now....I was drinking the Lemonade and stopped it last weekend when I traveled to Mississippi....I realized it and started back on the lemonade and trying to get more alkalized....Last night I had a small hit as I was going to bed and only one more in the middle of the night....Not bad for someone who often got 3-5 hits per night....I am even considering NOT taking the Sansert when it arrives as I want to keep a clean body as drug free as possible if I can....Thank you Batch et all for going for the prize....Pain free is the prize and control of our body.

Karen

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Aug 17th, 2011 at 8:36pm
I spoke with my pharmacist today about this natural regimen and she completely agreed it would be helpful.  She even understood the importance of the lemonade.

Title: Re: 123 Days PF And I Think I know Why
Post by Dixie Angel on Aug 18th, 2011 at 11:27am
I am having only shadows now. I had gone back on the Fish Oil I was taking for something else before I picked up the Vitamin D3 and calcium citrate with the added D3, magnesium, and zinc. It made my clusters a lot shorter in duration. Now that I have the D3 and the calcium citrate, I am experiencing only shadows. The past two nights I have not been awakened with the piercing pain of clusters. I had had at least three clusters a night (sometimes as many as nine) since July 8. I am so excited! [smiley=clap2.gif]

Could you remind me once more the importance of the lemonade drinks? I had forgotten about that part when I started this regimen two days ago.  [smiley=embarassed.gif]

Batch, thank you so much for sharing your remedy on getting a handle on the clusters.  [smiley=hug.gif] I cannot tell you how much it means to be able to anticipate sleeping now when I dreaded the nighttime hours before the regimen.

Title: Re: 123 Days PF And I Think I know Why
Post by Brew on Aug 18th, 2011 at 11:45am

Quote:
Could you remind me once more the importance of the lemonade drinks? I had forgotten about that part when I started this regimen two days ago. 

Drinking something relatively high in acid content will naturally help to lower arterial pH levels.

Title: Re: 123 Days PF And I Think I know Why
Post by Dixie Angel on Aug 18th, 2011 at 12:09pm
Thank you, Brew. :)

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 19th, 2011 at 5:26pm
Hey Ian,

Thanks for the update.  I think you'll find this regimen has other benefits that will keep you on it for life.

Karen,

Good on you for sticking with this regimen…  It looks like it's starting to work.  If your CH respond like mine and many others have, you should be completely pain free in a few more days.

Dixie Gal,

Thanks for the feedback.  That’s great news.  Stick with this regimen even after your CH subsides completely.  Unlike other CH Rx drugs, this regimen is very healthy for you and it has no adverse side effects.  And at less than 20 cents a day...  it's also very affordable.

Rosie,

I'll add your fiancé's results to the tally when he completes the prednisone taper…  no telling at this point which method is working or working best.

LasVegas,

Thanks for the feedback from your pharmacist.  It's always good to hear endorsements from a medical professional on matters like this.  The comment on lemonade in particular.

Zeitgeist,

I found the article on vitamin D3 and nitric oxide last December when I was looking through studies on possible mechanisms in play with the anti-inflammatory and buffering regimen. 

I also found two more studies that point to the capacity of vitamin D3 to suppress or down regulate calcitonin gene-related peptide (CGRP) and vasoactive intestinal polypeptide (VIP), both of which are elevated during a cluster headache.

Doctors Peter Goadsby, MD and Lars Edvinsson, MD conducted a study that measured blood levels of CGRP and VIP in the external jugular vein and found both were elevated during a cluster headache attack.

Attacks were treated with either oxygen inhalation, sumatriptan or an opiate. Thirteen patients were studied of whom 10 were male and three female. All had well-established typical attacks of cluster headache when blood was sampled.

The results they reported in 1994 from this study should be of interest to all CH'ers and the physicians treating them.

" Treatment with both oxygen and subcutaneous sumatriptan reduced the CGRP level to normal, while opiate administration did not alter the peptide levels.

These data demonstrate for the first time in vivo human evidence for activation of the trigeminovascular system and the cranial parasympathetic nervous system in an acute attack of cluster headache. Furthermore, it is shown that both oxygen and sumatriptan abort the attacks and terminate activity in the trigeminovascular system."

I'm sure there are other mechanisms in play with this regimen but the neurochemistry gets real hairy so I've decided to leave that aspect of this regimen to the real experts and concentrate on documenting it's efficacy.

To date based on the available data, the raw efficacy of this regimen is 75% with the margin of  uncertainty at ± 15% due to the 11 CH'ers who reported starting the regimen and staying on it, but who have not reported a favorable response.  It also appears to work equally well for both episodic and chronic CH'ers.

Take care,

V/R, Batch


Title: Re: 123 Days PF And I Think I know Why
Post by RichardN on Aug 19th, 2011 at 6:15pm
Batch

  Wanted to report on this thread what I just posted on a thread by newbie Glenna.

  Have had no attacks last two days or nights.  Small shadow this morning knocked out with 02 in a couple of minutes.

  I jacked up the regimen three days ago.  Now taking 10K D3 morning & evening . . . 1200 mg fish oil (morning) . . . and Citracal Plus morning & evening.  Have been out in the heat/humidity both days without attacks (which has been impossible last several weeks).

  My plan is to continue on the higher dosages and if continued success possibly taper down . . . but right now ecstatic over some PF time.

  THANK YOU!

    Be Safe,   PFDANs

      Richard

Title: Re: 123 Days PF And I Think I know Why
Post by godsjoy777 on Aug 19th, 2011 at 11:05pm
Batch et all,
Just a note....I have had no hits in the last 48 hours....2 pain free nights! meaning no hits Wed night ....shadowed all day thursday but no more hits Thursday night and all day today (Friday) feeling great!
I am 6 weeks into a "usual" 12 to 16 week cycle and it appears to be broken....2 days and counting....Drinking my lemonaide right now ..... ;)   
Blessings y'all!
karen

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 20th, 2011 at 12:01am
Hey Richard,

Great news!  It's a wonderful feeling isn't it?  Stick with it and you'll find there are other benefits from taking this regimen.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by godsjoy777 on Aug 21st, 2011 at 6:51pm
Well....2 nights without attacks and then 2 nights after with 2....Still better than 5 per night....Will continue the regamine and see what happens.

Blessings,
Karen

Title: Re: 123 Days PF And I Think I know Why
Post by Mike NZ on Aug 22nd, 2011 at 12:32am
This seems to be working for me. A couple of days ago I had my first CH in 153 days (only a K6), after previously having CHs every few days (verapamil preventive) for 11 months. I am still taking the verapamil, but also vitamin D3, magnesium, calcium and omega 3.

Whilst it is impossible for me to tell if it was a cycle finishing, I've had shadows fairly often (typically from daily to every 2-3 days), so I suspect that it could be the combination of medication and supplements that is working.

To me, the cumulative evidence being reported is indicative of a successful approach.

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Aug 22nd, 2011 at 4:46am
Batch - thanks for the insights into the science.  It's important for me to be able to explain why the regimen works.  Still not quite able, but  :)

In real numbers, how many people have tried the regimen?


I'm still fine after 48 days.  After the regimen took effect after 2-3 days, I've only had one night hit (KIP 6-7), and that was when going to sleep after being awake 35hr.  I have had some shadows and KIP 1-2. I have been 100% with regard to the regimen. I do believe some of the shadows/minor attacks are due to empty stomach.  So not 100% PF, but very close.

I've added 45 mcg vit. K2 to the "recipe" - as it is believed to help direct all the calcium to the skeleton instead of calcifying veins etc. I also ponder adding Boron as it  keep showing up as vit D3 co-factor.

Title: Re: 123 Days PF And I Think I know Why
Post by godsjoy777 on Aug 22nd, 2011 at 8:25am
so sad...4 hits last night....getting frustrated but I know it will end in time anyway....staying on the regimin....Its all about being as healthy as I can be no matter what!
Blessings,
Karen

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Aug 22nd, 2011 at 3:09pm
I'm sorry to hear that, Karen.

I read somewhere that magnesium is critical for D3 to work.  But many tablets contains magnesium oxide. Magnesium oxide is said to be particularly difficult to absorb.  Only 4-5% is absorbed, I read somewhere.

We have almost the same story with Calcium.  Some forms are hard to absorb.  The Calcium Citrate is said to be easy to absorb.

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Aug 22nd, 2011 at 7:04pm

Zeitgeist wrote on Aug 22nd, 2011 at 3:09pm:
I'm sorry to hear that, Karen.

I read somewhere that magnesium is critical for D3 to work.  But many tablets contains magnesium oxide. Magnesium oxide is said to be particularly difficult to absorb.  Only 4-5% is absorbed, I read somewhere.

We have almost the same story with Calcium.  Some forms are hard to absorb.  The Calcium Citrate is said to be easy to absorb.

Your right ZG on both counts; if possible try to get hold of the citrated products for any of the vitamins taken, I found this out many years ago when I first went on the Mag/Cal/D3 trail.
And remember if you are taking Mag you also need to take Cal or you will end up with muscle & joint soreness.

Cheers
Barry

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 22nd, 2011 at 8:57pm
Hey Karen,

What a bummer...  I know you're working hard to make this regimen work.  Barry and Zeitgheist are correct, some salts of calcium and magnesium have less bioavailability.  If you're taking two of the Krikland brand of calcium citrate a day, both the calcium and magnesium should be readily absorbed.  You'll get the proper amount of zinc as well.

You've got a couple options.  Increase the number of calcium citrate tablets from two to four and see what happens.

The other option is to find some magnesium gluconate or magnesium citrate tablets.  Most of us get plenty of magnesium if we eat green veggies, leafy salads, peas and beans...  Having said that, a little more magnesium shouldn't cause any problems...

Bumping the total intake of supplemental magnesium up to 300 mg/day meets the RDA for magnesium yet is still below Tolerable Upper Intake Level (UL) for supplemental magnesium.  This should help the vitamin D3 to be even more effective.

Taking the calcium citrate and magnesium tablets a half hour prior to the evening meal with a glass of lemonade should help increase the bioavailability.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Aug 23rd, 2011 at 10:38pm
I don't like lemonade.

Will orange juice, tangerine juice, and/or grapefruit juice work?

Title: Re: 123 Days PF And I Think I know Why
Post by Brew on Aug 23rd, 2011 at 10:57pm
It is my understanding that limeade is an acceptable substitute.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 24th, 2011 at 12:27am
Margarita mix works best.  Jose Cuervo original lime margarita mix is great... but at 500 calories per 8 oz. you'll need to run a couple half marathons a week to keep from turning into a blimp...

I found that Baja Bob's sugar free margarita mix packets at less than $5/half gallon work best with no calories for sugar...  of course I do prefer to add the fermented and distilled agave to the mix...  :o :D ::).

That way when you do get hit, you've got a heck of a good excuse...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Aug 24th, 2011 at 12:37am

LasVegas wrote on Aug 23rd, 2011 at 10:38pm:
I don't like lemonade.

Will orange juice, tangerine juice, and/or grapefruit juice work?


Title: Re: 123 Days PF And I Think I know Why
Post by aprildawn on Aug 24th, 2011 at 3:34pm
Hi all, just got done with a stubborn cycle. Usually comes once a year. I have thought about trying the D3 regimen & was wondering if this is continued after a cycle is done. I am on preventatives all of the time & would like to get off them if possible. Thanks for any information. Have a PF day.

Title: Re: 123 Days PF And I Think I know Why
Post by Dixie Angel on Aug 24th, 2011 at 4:10pm
I have had one cluster since starting this regimen. I take no other medicines for CH and have to say that I am thrilled to be able to say that.  :)

I, too, am wondering if orange juice, tangerine juice, and/or grapefruit juice will work instead of the lime/lemon ades. I do know that if you are taking blood pressure pills, though, that it is not a good idea to drink grapefruit juice with some.  ;) Something about it makes the bp pills build up in your system. ;)

Title: Re: 123 Days PF And I Think I know Why
Post by Melvin on Aug 24th, 2011 at 5:05pm
I was recently given a diagnosis of cluster headaches after being mis-diagnosed with sinus infections three times in the last year, and having a headache for roughly two weeks.  The pain was unbearable, went to the ER and they prescribed hydrocodone which only made things worse.  Went to the neurologist and was given what my wife called a sobriety test and a prescription to something that just made me sick.  I ran across this thread, and realized that I already take a multi and fish oil daily.  I also realized that since I sit at a desk most of the day my body gets no vitamin D so off I went.  I bought a bottle of 5000iu vitamin and some calcium/mag/zinc pills.  Started taking them on Friday night, by Sunday my headaches were little if any and I haven't had one since (today is Wednesday).  Thank you so much!  I told my sister yesterday that I've gotten my first two full nights of sleep in about a month.  Oh I've also been making it a point to drink lemon or lime in my water in addition to lots of lemonade.

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Aug 24th, 2011 at 9:32pm

Dixie Angel wrote on Aug 24th, 2011 at 4:10pm:
I, too, am wondering if orange juice, tangerine juice, and/or grapefruit juice will work instead of the lime/lemon ades. I do know that if you are taking blood pressure pills, though, that it is not a good idea to drink grapefruit juice with some.  ;) Something about it makes the bp pills build up in your system. ;)


Glad I am not alone on the distaste ofr lemon/lime. 

I've been cautioned of not drinking grapefruit juice w/ meds such as Verapamil that impact blood pressure. 

Just thought OJ or tangerine juice are both acidic and would do the job equally as lemonade/lime, etc. 

Anybody experienced (successful or not) w/ OJ or tangerine juice w/ this regimen?

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 25th, 2011 at 4:23am
LV, All,

Regarding dislike of lemon and lime juice...  Any juice containing citric acid will work just fine.  Obviously, the higher the citric acid content the better... The following link may provide alternatives to lemonade and limeade:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

I've found that Pomegranate juice makes for a good alternative source of citric acid.  It's also frequently labeled as a healthy heart juice to boot...

Melvin, Great news! Thank you for the feedback.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Dixie Angel on Aug 26th, 2011 at 7:08am
LV, it is not that I dislike lemon-lime drinks, it is that I don't want to have to give up my weekly margarita night because of developing a dislike from having to drink it. I was to the point that I thought I wasn't ever going to be able to drink another cup of coffee after drinking it by the pot until I found this message board. ;D

I have been cluster-free since last Friday. :) Batch, thank you so much for this topic. [smiley=hug.gif]

Title: Re: 123 Days PF And I Think I know Why
Post by godsjoy777 on Aug 26th, 2011 at 8:24am
Wednesday evening got hit when the barametric pressure changed due to some unexpected rain (we are in drought season).  I was at a restaurant to celebrate my daughter's 27th birthday.  No O2 available so I got into my secret, 'though dwindling stash of Treximet and took one.  I had to go out in the parking lot and pace and push my head against a pole until it started to subside.  I don't ever want to be without O2....so now that I am in the last 3rd (hopefully) of my cycle (4 to 8 weeks left), I am taking my O2 to work and everywhere I go now.  No more hits that night (but felt all swollen from the trex)....but the beast made up for it last night with 5 hits.....sigh.  Still drinking lemon water all day and night, and all my supplements.  I will do it just because I know it's good for me...Still hoping for it to kill the clusters.
Tired,
Karen

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Aug 27th, 2011 at 12:30am

godsjoy777 wrote on Aug 26th, 2011 at 8:24am:
Wednesday evening got hit when the barametric pressure changed due to some unexpected rain (we are in drought season).  I was at a restaurant to celebrate my daughter's 27th birthday.  No O2 available so I got into my secret, 'though dwindling stash of Treximet and took one.  I had to go out in the parking lot and pace and push my head against a pole until it started to subside.  I don't ever want to be without O2....so now that I am in the last 3rd (hopefully) of my cycle (4 to 8 weeks left), I am taking my O2 to work and everywhere I go now.  No more hits that night (but felt all swollen from the trex)....but the beast made up for it last night with 5 hits.....sigh.  Still drinking lemon water all day and night, and all my supplements.  I will do it just because I know it's good for me...Still hoping for it to kill the clusters.
Tired,
Karen

HI Karen
Hang in there i'm sure it will start working in due time, i went for aboit 6 months before I got a decent break, but when that break come it was great & the breaks have been getting longer each time.

Cheers
Barry

Title: Re: 123 Days PF And I Think I know Why
Post by godsjoy777 on Aug 28th, 2011 at 9:38am
Well, The Sansert finally arrived and though I started it on Friday night....I had 3 hits right before starting it....Slept like a baby all night and again last night....Cluster free....Still taking th Vit D & Fish Oil etc...just because it is good for me.  I am hoping I don't have to ramp up the Sansert and just stay at 2 mgs daily until I am pretty sure the season is over...Praying....Sleep felt reeeeeally good!
Blessings to all,
Karen

Title: Re: 123 Days PF And I Think I know Why
Post by jman1980 on Aug 29th, 2011 at 5:41pm
i have been wanting to post here for the past week, but my internet was down but its back up now. i started this regimen last week and it is a godsend. Since i have started this regimen, i have only had one full attack, and several that started but never got intense. i am truly amazed that something this simple and easy to get has worked when nothing i got from my doctor did. i wish this would work for everyone, and i feel it deep in my heart for those it doesn't work for. for those it doesn't work for, i truly hope that you all find something that does sometime soon, and i will keep you all in my heart and prayers.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 29th, 2011 at 7:02pm
Hey JMan,

Thanks for the feedback...  I'm glad to hear the anti-inflammatory regimen is working well for you...  As you continue to take it you'll find like me and many others, there are additional wonderful benefits that will keep you taking it for the rest of your life...  It's that healthy for us!

As far as we can tell at this point with over 75 CH'ers reporting, it is not a matter of "IF" it will work, but more a matter of "WHEN." 

It appears there are some CH'ers with very low 25 hydroxyvitamin D3 a.k.a. 25(OH)D levels (the serum metabolite of vitamin D3), and that it can take as long as three months to elevate this metabolite up to the middle of the normal range 100-200 nmol/l (40-80 ng/mL) to achieve a therapeutic response to their CH.  If in doubt, see your PCP to have your blood tested for 25(OH)D levels.  Anything less than 100 nmol/L is deficient and this appears to make the frequency and severity of CH much higher.

Most CH'ers are experiencing a favorable response to this regimen in the first two weeks after starting it and nearly all have eventually gone pain free.  That includes the chronic types...

Others have reported it took upwards of a month to achieve a significant level of relief from their CH.

The bottom line is don't get impatient and quit this regimen if you don't have an immediate response after starting it...  Good things are well worth the wait...

Thanks again for the feed-back.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Aug 29th, 2011 at 10:11pm
Bought delicious tangerine juice, not from concentrate, at Trader Joes this afternoon.  Yummy for this regimen. :D

Here's a question...should these 3 vitamins be taken w/ food or does it not matter?

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Aug 29th, 2011 at 11:41pm
LV,

It doesn't really matter when you take the vitamin D3 and Omega 3 Fish Oil...  What makes the most sense is to take the calcium citrate and juice prior to the evening meal.  You'll get the best buffering action that way on the hydrochloric acid the stomach makes to digest food.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Aug 30th, 2011 at 1:00am
OK, will do, thanks Batch :)

Title: Re: 123 Days PF And I Think I know Why
Post by jhammer on Aug 31st, 2011 at 10:19am
Looks like I'm headed to the vitamin store after work!  I'll report any success/failure.  I should stay away from calcium though since I'm prone to getting kidney stones, will that screw up my chances?

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Aug 31st, 2011 at 11:48am
I had my blood tested after 55 days on this regimen. I got the results today, a week later. D(25-OH) is now at 225,2 nmol/L.  Which is good! Unfortunately pre-regimen levels are unknown, but I suspect they were very low.  I consider reducing D3 intake to maintenance level, 5.000 IU.

As for the nightly encounters with my old nemesis Mr. Cluster, the Great Terminator of Appointments: Almost completely gone.  Generally, after 62 days under regimen, and after the 2-3 initial days before full effect:

  • 4 moderate hits during sleep/night. But - all those coincides with me having burnt midnight oil.
  • A few low KIP scale hits during day
  • Some shadows of no consequence.
  • No Imitrex injections(!) No treatment except for some Red Bulls.
  • Countless hours of wonderful sleep


I've been in 'cycle' more or less non-stop since July 2010 after 20 years of being straight episodic. The regimen have had a dramatic and practically instant effect. The timing couldn't have been better - just as I was about to conclude that I could not possibly continue working as an IT professional. All of a sudden "The Future's So Bright (I Gotta Wear Shades)"  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE  (I know this is scientifically to early to call, but one day this song might be the anthem for clusterheads of the world  :) )


Thank you Batch, and all the other test pilots. I really owe you one for bringing this game-changer to town!

br/Rune






Title: Re: 123 Days PF And I Think I know Why
Post by jhammer on Sep 1st, 2011 at 8:54am
This must be a coincidence, there's no way this could have worked the first day...yesterday I took 2x5000iu D3 gelcaps, and 2x1000mg fish oil (omega 3) gelcaps, along with 3x200 mg ibuprofen and 2x400mg turmeric capsules last night.  I also took one of my wife's Clonazepam (she gets panic attacks) I think it was 10mg, to help me sleep.  It was the first time I slept the whole night in 4 days!

Now that I take more pills than my grandmother, I can probably skip dinner ;)

I'll keep up the regimen (minus the Clonazepam unless needed) and report back any progress.

Thanks!

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Sep 1st, 2011 at 3:20pm
Rune,

Awesome post!  It carries far more impact on readers who have yet to give the anti-inflammatory regimen a try to prevent their cluster headaches than anything I can say...

You've set the bar for the rest of us with your persistence, your own research on vitamin D3 dosing and testing for the vitamin D3 metabolite therapeutic and maintenance levels.   Well Done!

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by jhammer on Sep 2nd, 2011 at 9:30am
Day two: 2x5000iu D3, 2x1000mg fish oil, 2xB12 lozenges (for carpel and ulnar tunnel syndrome, forgot to mention these in my post yesterday).

No attacks at all, just a tiny little shadow of a shadow.  I did wake up at the usual times but not because of the pain.  And I was able to fall right back to sleep again.

I confess, I only read the first and last couple pages of this thread...WHY does this work?  Is it the vitamin deficiency causing the headaches?

Thanks a ton for this information...maybe I can cancel my appt with the neuro ;)

~Jake

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Sep 2nd, 2011 at 11:49am
Jake, good news!  But do not forget calcium and magnesium.  Both are very important co-factors for vitamin D3. Intake of 10.000 IU D3 without calcium might be dangerous.  The general effect of D3 is sharply reduced without magnesium.  500mg of both is advisable.  15-25mg of Zinc too. Batch covers this in several posts in this thread.

See also START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (VitaminDCouncil.org) and START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (Vitamin D Wiki).

Batch - Thanks!  You have been quite convincing yourself, rest asured!

Now we need to spread the word :-)  I'll continue experimenting.  For instance there seems to be a debate on what form of magnesium is most effective.  Also having 250mg  in the morning and evening is better than a single dosis of 500mg.

Title: Re: 123 Days PF And I Think I know Why
Post by jhammer on Sep 2nd, 2011 at 12:05pm
I'm a little scared of the calcium because I get kidney stones (though I'd rather pass 100 of those before getting another cluster).  I'll give it a go though, thanks for the tips.

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Sep 3rd, 2011 at 11:15am
Hi

When taking vitamin-D3 there is no need for taking calcium because the calcium from the food is absorbed more easy. I have been cluster free for allmost 3 years, and take 5000 IU vitamin-D3, 1000 mg Omega3, 500 Mg Magnesium, Zink and 3 mg Boron. No need for calcium here.  ;)

nhs

Title: Re: 123 Days PF And I Think I know Why
Post by jhammer on Sep 3rd, 2011 at 5:01pm
Day 3 was not so good.  I continued with the 2x d3 @ 5000iu. 2x 1000mg fish oil.  I added 1x 500mg calcium 1x 500mg magnesium and 1x 50mg zinc.  I also continued with the b12 lozenge. 

I awoke with pretty intense shadows which evolved into about a kip6-7 cluster.  It tapered down to about a 4 and stayed there for several hours.

I'm committed to it now though, I'll see how today goes.  Maybe for this evenings dose I'll skip the calcium.

Title: Re: 123 Days PF And I Think I know Why
Post by slacker032 on Sep 4th, 2011 at 3:23am
Posted in a thread in the general forum but it's probably more suitable for this thread.

I've been splitting up my D3 dosage between morning and afternoon.  Would it be better if I took the whole 10,000 IU in one dose in the morning?

This is my current regimen:

Morning: 5,000 IU D3, 1000 mg Fish Oil, 300 mg Calcium Citrate (w/ 150 mg Mg, 7.5 mg Zn)

Afternoon: 5,000 IU D3, 1000 mg Fish Oil, 300 mg Calcium Citrate (w/ 150 mg Mg, 7.5 mg Zn)

Evening: 1000 mg Fish Oil

Does this look about right or am I missing something?

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Sep 4th, 2011 at 10:16am
slacker032 - This is my impression

D3: Important to take with food (some fat), but as D3 is stored in the body, it is not important when.

Mg: Best to split as Mg is consumed after 6-8 hrs
Zn: I don't know.
Ca: Often recommended to take in the evening
Omega 3: I don't know.

As for whether Ca is necessary or not: As far as I understand it depends on what food one eats, amount of milk etc.

Apparently we need to get more info. on this.  Googling is not necessarily helpful as much D3 information is very bone-/rickets-fixated and based on "old D3 truths". 

However, vitamin K2 is important as it helps directing Ca to the bones/teeth and away from the blood vessels. VitaminDCouncil and others also mention Boron and small amounts of Vitamin A as D3 co-factors.

I have begun splitting, but the first 60 days I consumed the entire cocktail for breakfast with very good effect.

Title: Re: 123 Days PF And I Think I know Why
Post by slacker032 on Sep 4th, 2011 at 3:52pm
Thanks Zeitgeist.  Great info!

Title: Re: 123 Days PF And I Think I know Why
Post by coach_bill on Sep 4th, 2011 at 11:31pm
Thanks Batch,

It's clear that i'm a Seed user and Shroom user (when was available). Last march was the last dose of any kind. I use mag supplement pills along with cal,d3 1000iu. Ive been reading this post and was wondering if ant other clusterbusters have tried this with success.

I'm not far from the recipe with the mag,cal,d3 i take and would be easy to start.

Thanks, Coach Bill

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Sep 5th, 2011 at 2:15am
Coach Bill,

Seven out of ten Busters reported a favorable response.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Pinkfloyd on Sep 6th, 2011 at 1:05am
Actually, only three "busters" completed a short survey and one out of three reported positive results.


Bob

Title: Re: 123 Days PF And I Think I know Why
Post by slacker032 on Sep 6th, 2011 at 1:15am

Pinkfloyd wrote on Sep 6th, 2011 at 1:05am:
Actually, only three "busters" completed a short survey and one out of three reported positive results.

Bob


I'm trying this regimen (along with Co-Q10 and B2) in conjunction with Busting for a particularly nasty cycle.  I'll let you guys know how it goes.



Title: Re: 123 Days PF And I Think I know Why
Post by matt25holland on Sep 6th, 2011 at 2:11am
going off to have my blood drawn in half an hour to check my vitamine D levels, will get the results back in a week, will keep you guys posted!

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Sep 6th, 2011 at 5:04pm
Bob, 

I read the three responses to your survey…  their results are included in the following tally.

The seven out of ten figure came from the thread titled: "Dramatic vit D3 megadose success stories at ch.com" at the following link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

I counted the number of CH'ers who posted they were going to try this regimen and the number CH'ers who posted a response to it.  I didn't count the CH'ers who posted a response I had already counted here at CH.com.

11 posted they would start the regimen
7 posted they had a favorable response
1 posted it made his CH worse but only took it for 1 week commenting may have gone into high cycle
2 didn't post any results

I just completed another search of your site using "D3" and "Work" or "worked" as search terms for the year and came up with another 11 CH'ers of whom seven had a favorable response, one no-change, and two didn't post any results.

That brings the present rough running totals at your site to:

21 posted they would start it
14 posted they had a favorable response
1 posted it made his CH worse but only took it for 1 week commenting he may have gone into high cycle
1 posted a negative response after 1 week
1 posted a favorable response then a negative response but was still trying
4 didn't post any results

It's not clear how many were busting at the time or if the episodic types were nearing end of cycle.

It also appears many of the CH'ers who tried this regimen were expecting a rapid response...  From the medical literature I've read, it can take as long as 3 months to elevate 25(OH)D levels from < 50 nmol/L up to 150 nmol/L, the center of the optimum range of 100-200 nmol/L (40-80 ng/mL) at a daily dose of 10,000 I.U. vitamin D3.

Hope you have a wonderful Conference in Chicago

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by jhammer on Sep 7th, 2011 at 12:12pm
I have some catching up to do...Same regimen (forgot to mention that I've been splitting it between morning and evening).  Day 4 was pretty good, just some minor shadows, day 5 was great all day until I had some dessert my Uncle made.  Turns out the strawberries were soaked in some sort of liquor...DOH!  However the attack did not last long at all. 

Since then, nothing but some minor shadows every now and then.  I have added the Clonzepam back in (1/2 of a 1mg tablet 2 hours before bed).  I doesn't seem to hurt anything and it allows me to sleep all night long.  If I take it any later than I run the risk of being late to work ;).  Last night I got home late from a meeting and missed my opportunity so I woke up at the usual times for an attack but completely pain free.

I can't wait to see my neuro next week, perhaps he'll order some blood work to determine D3 levels...

~Jake

Title: Re: 123 Days PF And I Think I know Why
Post by matt25holland on Sep 8th, 2011 at 7:34am
hiya jake, have you done any blood work done before you started this regimen?

Title: Re: 123 Days PF And I Think I know Why
Post by jhammer on Sep 9th, 2011 at 2:51pm
No, but I think I'll request it at my appt. next week.  Aside from vitamin D3 I'll ask for vitamin B levels.  I understand that your body can only store 4-5 years of B12...I had my Gall Bladder removed about 4 years ago.  Supposedly that could cause some absorption issues.  I'm wondering if there is a more comprehensive test for all vitamins that could be done...

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Sep 10th, 2011 at 12:18pm
Jhammer,

When you ask for the blood test for 25-Hydroxyvitamin D, also called 25(OH)D, you should also ask for a Chemistry Panel plus complete blood count (CBC).  That way you'll have info on your electrolytes, calcium, and magnesium levels.  This is important as it will tell you if you need to add more calcium and or magnesium to your daily supplements.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by 1961mom on Sep 11th, 2011 at 5:34pm
I'm a little scared of the calcium because I get kidney stones (though I'd rather pass 100 of those before getting another cluster).  I'll give it a go though, thanks for the tips....

Would the vitamin k2 be helpful for this?

Title: Re: 123 Days PF And I Think I know Why
Post by 1961mom on Sep 11th, 2011 at 5:35pm

jhammer wrote on Sep 2nd, 2011 at 12:05pm:
I'm a little scared of the calcium because I get kidney stones (though I'd rather pass 100 of those before getting another cluster).  I'll give it a go though, thanks for the tips.


Sorry Jhammer... I meant to quote you, not copy & paste :)

Title: Re: 123 Days PF And I Think I know Why
Post by bhb on Sep 12th, 2011 at 2:37pm
after a couple of weeks of doing this I haven't had a really bad hit in the last 4 days and none, zero at night. Oddly I still wake up at the times I was getting them but no pain I can go back to sleep. A few minor hits during the day that a Red Bull and a few deep breaths in 5 minutes gone. I also haven't had any of those horrible day long shadows that just wear me out.

I also know that it's not just the end of my cycle, right now I'd be at the high point looking at a least a month to go.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Sep 13th, 2011 at 8:21pm
Hey Bhb,

Thanks for the feedback and good on you for staying with this regimen long enough to give it time to work.  Wonderful feeling isn't it?

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by jhammer on Sep 14th, 2011 at 2:37am
I had my neurological appt. And was somewhat less than impressed with the dr's response to my request for blood work.  He said that 'no one does that', regarding checking vitamin levels, etc...

I go to a research hospital to see the neuro.  Everytime I visit he has some medical students examine me first and then he comes in and goes over their findings with me.  This time there was a well informed student who seemed to know quite a bit about the vitamins and minerals I was taking.  He also mentioned that they were most likely responsible for my arrhythmia acting up since magnesium is one of the 'ions' that causes the heart to actually beat.  So I'll knock that one down a bit.  He also suggested that I take my recipe to my PCP and ask them for some advice 'cause the neuro wouldn't be interested...he was obviously right.

The good news is that I haven't gotten hit by the beast in over a week.  The Dr. Wanted to put me on Depakote again but I told him 'no thanks, I'll stick with what I'm doing now' :)  I asked for some abortive meds in case I come across some malicious strawberries again so he prescribed immitrex injections and oxygen later if that doesn't work.

Title: Re: 123 Days PF And I Think I know Why
Post by Mike NZ on Sep 14th, 2011 at 2:54am

jhammer wrote on Sep 14th, 2011 at 2:37am:
I had my neurological appt. And was somewhat less than impressed with the dr's response to my request for blood work.  He said that 'no one does that', regarding checking vitamin levels, etc...


So ask why not? Then ask again...

With the interest from one of the medical students, get hold of their details and work with them. Feed them with information and they will no doubt be eager to learn as much as possible.


jhammer wrote on Sep 14th, 2011 at 2:37am:
he prescribed immitrex injections and oxygen later if that doesn't work.


Get oxygen now.

It's a life changer in being able to kill off CHs quickly, cheaply and with none of the side effects from imitrex.


Title: Re: 123 Days PF And I Think I know Why
Post by oxyrunner on Sep 14th, 2011 at 3:48am
Hi all, I haven't checked in for a while so thought I would update you - cycle ended last week - took 8 months this time instead of the usual 5 weeks!! Typically I got to meet my headache specialist yesterday. He was very knowledgeable about all the meds and oxygen etc and has instructed my Dr to arm me with a list of drugs before my next cycle begins - BUT when I mentioned the vitamin D3 regime he told me it wont have any effect on CH!! I told him how it has "saved me" from  months of pain and that I had not needed to take any drugs since the D3 took effect and he suggested that this was purely coincedental at which point I said I was not prepared to stop the regime to prove my point.
Im just a bit cross (dissapointed) that someone so well informed could be so narrow minded, happy to dish out drugs but not prepared to even consider there is a cheaper, healthier alternative.
What Batch has doing here is fantastic but its gonna take time to get the medical profession to get on board.
PF times everyone - keep taking the vitamins x

Title: Re: 123 Days PF And I Think I know Why
Post by bhb on Sep 14th, 2011 at 8:07am
Batch

It is a GREAT feeling to get ones life back. Now I can really enjoy the games - GO PACK GO

I was unsuccessful in getting my PCP to do blood work and I'm still waiting for my appt with my headache Dr. Called back in July when they started and soonest appt was Oct 21st, I'm actually thinking of canceling as she's not on board with o2 unless I'm in the ER. Too bad she's the only one anywhere near me, but as I got the welders o2 it doesn't matter and I have to decide if I'm going to tell her. That's something else I haven't needed to do in the last few days. This regime really works for me. I'm just so happy and not even our worst customer could get to me yesterday and he sure tried.

Title: Re: 123 Days PF And I Think I know Why
Post by jhammer on Sep 14th, 2011 at 11:07am

bhb wrote on Sep 12th, 2011 at 2:37pm:
after a couple of weeks of doing this I haven't had a really bad hit in the last 4 days and none, zero at night. Oddly I still wake up at the times I was getting them but no pain I can go back to sleep.


Have you taken any kind of sleep aid?  I cannot fall back asleep at all, I try like hell for hours but to no avail.  I want to get away from the clonzepam if I can but I haven't found anything gentler that will actually keep me asleep all night and let me wake up without feeling grogy.

Thanks,

~Jake

Title: Re: 123 Days PF And I Think I know Why
Post by bhb on Sep 14th, 2011 at 11:48am
No so far I go right back to sleep within 10 minutes. I do keep a fan running on low for the white noise as I found many years ago it helped me sleep.

Title: Re: 123 Days PF And I Think I know Why
Post by tgdurst on Sep 16th, 2011 at 5:28pm
Batch first THANKS. I am a episodic suffer here. I come back to visit every 2-3 years and you all are always here always helpful.

I started the "batch" on Tuesday after a serious 8-9 attack on Monday night. So far one light headache on the 14th is it. My one question is: When does the anxiety of another hit go away? This cycle has been weird to me though. It takes two days off and then POW it hits me again. Tonight will be two days off so I am praying this is the ticket. Either way the D3 has me feeling great during the day so its worth it alone. I will post tomorrow with the results of tonight.

Title: Re: 123 Days PF And I Think I know Why
Post by tgdurst on Sep 17th, 2011 at 8:14am
Well my update. True to form I got a MILD hit this AM of about 2-3 and now mild shadows. This is better than the 8-9 and the very first thing I did when it woke me up was take my "batch" then hit a Monster drink. I do not have O2 and I was hoping that this would allow me to avoid it. I a month into my cycle so I hope it is over soon. You all have a great day.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Sep 17th, 2011 at 8:57am
Hey Tgdurst,

Thanks for the feedback and kind words.  I suspect your anxiety over the next hit will end and you'll stop looking over your shoulder like David Janssen in The Fugitive after a week or so...  It took that long for me to finally realize this was a lasting and very healthy method of preventing my CH...

I've been keeping a running tally of responses to this regimen and so far the time to a favorable response appears bell shaped as expected with most folks reporting a significant decrease in the frequency and severity of their CH during the second week or they've gone pain free.  A few have reported favorable responses after two days and a few more have taken up to three weeks before they had a favorable response.

The time to a favorable response appears to be directly related to the serum level concentration of 25(OH)D, the metabolite of vitamin D3.  Data is sketchy at this point as only a few have managed to see their doctor for the 25(OH)D lab tests.  The few that have seen their doctor for this lab test indicated their levels of this metabolite were low.  A couple CH'ers who have been pain free for a month who also had their 25(OH)D levels tested reported they were at the upper end of the 100-200 nmol/L (40-80 ng/mL) normal range.

Hang in there and consider staying on this regimen as long as you can afford the 20 cents a day cost...  It has many healthy benefits beyond preventing CH as you've already noted.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by tgdurst on Sep 18th, 2011 at 7:15am
Update #2 woke up last night 1:48 super mild could have slept through it. Woke up at 6AM (kids soccer game) hit with a 6-7 (still with me) Monster and exercise  is all I can do. This sucks. Still on the "batch" and will be no matter what I have faith that this will work before my cycle is over.

Title: Re: 123 Days PF And I Think I know Why
Post by ClosetCHer on Sep 18th, 2011 at 1:55pm
tgdurst,
Seems like your having problems with night attacks, same as me. Read the post about 4 below this one about melatonin, time release or regular. That might help alleviate the pain of waking of with a CH in the middle of the night and remember to wait a couple of days or more for it to work. I'm doing that right now!

Title: Re: 123 Days PF And I Think I know Why
Post by Radar63 on Sep 19th, 2011 at 5:05pm
HI Batch

Ian here (UK, episodic on the "Batch" since April, pain free still).  TO all those who are not quite there with it please persist, it is so worth it.  My body feels supple, I have no niggles, my mind is bright quick and always alert, I sleep really well and I am so happy.  Batch my neuro has now taken the details including this blog and is recommending persistent CHers try the treatment, he even asked me for my souce of meds (try START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE for the St Clements fish oil if yours repeats on you, zero fish taste, no burps).

Be persistent and keep with it, this really works.

Ian :D

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Sep 20th, 2011 at 9:46am
Ian,

Thanks for the wonderful update and for spreading the news that this regimen really works...  It's refreshing to hear that another neurologist sees the benefits of this regimen and the notion that Integrative and Holistic medicine has a place in the treatment of our disorder.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by tgdurst on Sep 22nd, 2011 at 6:07am
My latest update. So for 3+ days NOTHING except paranoia. Yesterday should have been my pain day (like we can tell when it will hit) but nothing but fear hit me all day. I thought every eye twitch and extra bit of heat would bring the beast but nothing has been here for 3 days. So far so good.. if all is well on Sunday.. I will do my test.. run a 5K..

Thanks again all..

Title: Re: 123 Days PF And I Think I know Why
Post by shaggyparasol on Sep 23rd, 2011 at 1:55am
Hey there Batch and crew. 

I have been following this thread a bit and hoping it leads to another weapon in our cluster arsenal.  I figured I would add my recent experience to the mix. 

First off, I have been episodic for 27 years.  About 3 years ago I started on the Cluster Buster protocol and have beaten the pain back to almost nothing.  I still get occasional shadows and need to be careful about taking my medicine at proper times.

Currently I am in my cluster cycle (not getting any hits, but shadowing a bit and dosing with seeds and fungus).  I just had a check up with my Doc (naturopath and no real familiarity with CH) and the blood test showed:
-low vitamin D. 30 ng/ml (30-100 normal).  Doc suggested vitamin D supplements.
-low cholesterol 128 (normal 125-200).  Doc suggested Flax seed oil (omega 3) and unrefined sesame/sunflower oil for Omega 6.
-Another reading showed very acidic blood.  In addition my dentist yesterday filled some teeth where he thought something acidic had been eating away at the tooth.  We couldn't figure out what I had eaten and he thought maybe acidic saliva could be the cause.

My doc suggested a teaspoon of baking soda (non-aluminum) each day to raise the ph. 

It would be interesting, as others have noted, to get more info on the clusterheads and the various blood values during and between cycles to see how much is explainable.

Anyhoo, wanted to throw some more into the mix. Hope everyone is feeling good. :)

--The Shaggy

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Sep 23rd, 2011 at 2:42am
Hey Shaggy,

Thanks for the post and results of your 25-Hydroxyvitamin D3 test.  Your naturopath is spot on... with one small exception that's subject to reasonable discussion... 

The experts at the Vitamin D Council and many of Integrative/Naturopathic physicians who frequently treat patients deficient in vitamin D3 (really the super hormone) all claim that the normal reference range should be 40 to 80 ng/mL and as high as 90 ng/mL for lifeguards and folks who run around in swimsuits much of the day in the mid latitudes...  According to them, you're deficient.

The anti-inflammatory regimen is actually two regimens in one...  The anti-inflammatory part combines the properties of Omega 3 Fish Oil and vitamin D3 to provide the anti-inflammatory stimuli...  To be effective, the experts say you also need to dose with calcium, magnesium and zinc to gain the full benefit of the vitamin D3.  A few other Integrative/Naturopathic physicians also suggest vitamin K with the above regimen...

The second part of the anti-inflammatory regimen occurs you combine the calcium citrate used in this regimen with lemonade, limeade, or any other fruit juice high in citric acid.  They combine in the stomach to form a buffer that elevates the arterial pH...  This is essential when it comes to controlling cluster headaches as an elevated arterial pH stimulates vasoconstriction and that works against the cluster headache triggering mechanism.

The Omega 3 Fish Oil is also a great regulator of cholesterol.  It helps balance the HDL and LDL while lowering the really bad triglycerides... Lots of studies on the use of Omega 3 Fish Oil to control cholesterol at NIH...

If you'll give this regimen a try, I'll wager your shadows will be a thing of the past...  It works that well...  You just need to give it a little time.  Studies have shown it can take as long as three months to elevate serum levels of 25(OH)D from 20 ng/mL up to 60 ng/mL at a daily dose of 10,000 I.U./day.

Most of the CH'ers who have found relief from their cluster headaches and gone pain free using this regimen have done so near the end of their second week;

Thanks again for the post.  Again, it sounds like your Neuropath is spot on with his assessments and recommendations...

You might find the paper by Dr. Peter Lewis of interest.  It discusses the tests for 25-Hydroxyvitamin D and dosing.  To convert nmol/L to ng/mL divide by 2.5.

Take care,

V/R, Batch


http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=VITAMIN_D_-_Dr__Lewis.pdf (186 KB | 14 )

Title: Re: 123 Days PF And I Think I know Why
Post by coach_bill on Sep 23rd, 2011 at 10:14pm
Batch,

I remember reading in the post that you maybe switching to just the d3 @10,000 I.U daily to see if was just the d3. Did you try this yet? has it worked?

Thanks, Coach Bill

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Sep 24th, 2011 at 6:16am
Coach Bill,

The short answer is no...  I've stayed on the full regimen for nearly a year.  My wife has been taking the same regimen for nearly that long and she doesn't have cluster headaches...  She did have migraines, but they appear to be a thing of the past like my cluster headaches.

After reading more about vitamin D3, it was clear that supplementing with calcium, magnesium and zinc was essential for the body to process vitamin D3 effectively. 

I've also taken Omega 3 Fish Oil for several years and found it had a moderating effect on the frequency of my cluster headaches so I saw no reason to stop taking it.  Omega 3 Fish Oil is also very effective at keeping my cholesterol levels in balance and in the normal range.

In short, there are too many benefits from taking the entire regimen to change anything...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by tgdurst on Sep 27th, 2011 at 6:11am
My next update: 1 week pain free..then I decided to work out - on of my old triggers - each day after I worked out woke up with a mild 1-2 2-3 headache just enough to piss me off. I got hit last night 2:20 after a workout in the afternoon. So my triggers are still triggers it would appear. But the outcome is much better (although I am still beat sitting here at work) still on the batch..cant see a reason to stop.. now the question is, do I stop working out again or deal with the 2-3 headache the next day???

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Sep 27th, 2011 at 3:04pm
Thanks for the update...

Give this regimen another week or two an you'll have so much energy... you'll need to run...  and there won't be any CH...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

I was cutting fire wood and packing it out of the woods to load my pickup several times a week after six weeks on this regimen...  and no CH!

You're still building 25(OH)D levels, and given the fact you got hit during and after running, you're likely still boarder line vitamin D3 deficient.

Our bodies consume roughly 5,000 I.U. vitamin D3/day...  At a therapeutic dose of 10,000 I.U. a day it can take up to three months to reach the center of the normal reference range of 100-200 nmol/L (40-80 ng/m>).

If you've got the time, ask your doctor for a lab test of your 25-Hydroxyvitamin D, a.k.a. 25(OH)D, and you'll know for sure where you are in the process of going pain free for good.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by jhammer on Sep 29th, 2011 at 10:00am

shaggyparasol wrote on Sep 23rd, 2011 at 1:55am:
...In addition my dentist yesterday filled some teeth where he thought something acidic had been eating away at the tooth.  We couldn't figure out what I had eaten and he thought maybe acidic saliva could be the cause....


Interesting, I have the same condition.  My dentist tells me that me teeth have 'decalcified' due to acidic drinks or something.  I've been using Pro-namel for a couple years now which helped re-mineralize the teeth.  But aside from that, I'd be interested to have my blood tested for that as well.

~Jake

Title: Re: 123 Days PF And I Think I know Why
Post by shaggyparasol on Sep 30th, 2011 at 11:31am
Hi Jake.  I think it would be really interesting to do a very thorough study of us clusterheads and look for common threads.  We do it on our own on the web and at conferences, but a medical study with dental, blood tests etc.  All the stuff we are thinking may play a part in the attacks.

I just went through some frequent shadows/oncoming cycle.  Every 11 months now it seems to try to sneak back in.  2 doses of RC seeds and 2 light/medium doses of mushrooms and the shadows have been gone for about 2 weeks now.  Beer test coming soon.  I also started on 4-8,000 iu's of vit D (may ramp it up, need to read more about it) and 1/2 teaspoon of baking soda (with lemonade Batch) daily to lower acidity.  Life is good for now (3 years actually).

All the dental stuff sucks, but my teeth feel back to normal and hopefully I will get the ph thing under control a bit.

Take it easy cluster friends! ;)

--The Shaggy :)

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Oct 1st, 2011 at 7:20am
Hi all!  I had my blood tested again.  All values are normal, except for Vit. D.  Also - all calcium related values are normal. 

I've been very loyal to Batch' regimen for 3 months now. One month ago my vit D level  (25-OH) was 225 nmol/L. Now it's 295 nmol/L.  That's 
90 and 118 ng/m - both well beyond the reference values - 100-200 nmol/L  (40-80 ng/m).

So my Vit D levels are perhaps too high.  I will begin taking only 5.000 IU every other day.

As for Mr. Cluster - he's still around. I've had  some occasional shadows and some very few hits in the lower KIP area.

This pattern is radically new in my 20+ yrs Cluster career, so as for me, there is no doubt left about the effectiveness of this regimen. The root cause of cluster headaches is apparently not affected, but the symptoms most certainly are. I now live a normal life and informing people that I suffer from cluster headaches almost feel artificial, i really don't suffer at all.

As for other notable effects: Sleep, mood and general health  are affected. Quality of sleep has become exceptionally high. I sleep like a happy child. Also falling in sleep - my usual problem - is generally much easier.  My spirit is higher, no streaks of depression. I'm also quire sure that by body now easily fends off the common cold.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Oct 2nd, 2011 at 4:00pm
Rune,

Awesome post...  Talk about a game changer...  You're taking us into uncharted waters with respect to controlling CH with this vitamin D3 based regimen.  You've also made two important points that other CH'ers need to understand and remember:

1.  This regimen isn't 100% effective for everyone...  but it can reduce the frequency and severity of cluster headaches to acceptable levels...  without adverse side effects...

2.  Rune has also taken a proactive approach to this regimen with regular tests for 25(OH)D and is adjusting his dose for vitamin D3 accordingly.

Rune has also done his homework... Although he's exceeded the 25(OH)D upper limit of 100 ng/mL (250 nmol/L), he knows he's still a long way from the toxicity threshold level - 200-250 ng/mL (500-750 nmol/L) or the record... according to the experts at the Vitamin D Council... 

It appears the record holders are two Multiple Sclerosis sufferers who were self-dosing on 2,000,000 I.U./day to control the onerous symptoms of their disorder - both men recovered...

See: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

This is a good read for everyone on the anti-inflammatory regimen or contemplating starting it. 

The last thing we want is bum gouge/misinformation floating around that spooks CH'ers away from giving this regimen a try...

As the Vitamin D3 Council states on the topic of vitamin D3 toxicity... 

"Can too much vitamin D be harmful? Yes, it certainly can - though anything can be toxic in excess, even water. As one of the safest substances known to man, vitamin D toxicity is very rare. In fact, people are at far greater risk of vitamin D deficiency than they are of vitamin D toxicity."

Take care and thanks again Rune.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Edgordon on Oct 4th, 2011 at 12:18am
I have had CH for 20 years. I was finally diagnoised in 2004 after going to the emergency room 3 times in two weeks. After that my doctor prescribed me prednisone. I took prednisone until the cycle ended, which was only a guess. After 30 days I would start the taper down from 50ml per day. If I started to feel shadows I would ramp back up for two more weeks. That is all I have ever had for managment of CH and it had worked  until recently. It stopped working and I had forgotten how painful CH can get untreated. I found this website and am I ever thankful. I asked for help and had many people respond. Like start this regiment. Since I can't afford a doctor and the meds right now I have been looking for an alternative that is affordable. I started the "BATCH" regiment today. This may be coincidence, But Even tonight, I do not have the shadow ache that I normally get every night. I will keep everyone updated every day.   

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Oct 4th, 2011 at 4:07am
Hey Ed,

Thanks for the post and good move on starting the anti-inflammatory regimen.  I think you're going to like it a lot.

BTW, I live 70 miles North of you between Bremerton and Silverdale near a wide spot in the road called Tracyton.  Shoot me a PM and let's see if we can arrange a rendezvous.  It's always a hoot to meet another CH'er.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by tgdurst on Oct 8th, 2011 at 1:15pm
Next update.  End of 3 weeks. Pain free days for 2.5 weeks now. For the most part pain free night 2 times woken up with 1 or 2 slight headaches this always follwed a hardworkout during the day or a run.  I upped my D3 to 15000iu Wednesday and have been great since. Killer workout yesterday slept late today Ifirst time in months) and took a 5 mile run today. If I make it through tonight then I consider myself golden. I will keep D3 up to 15000 for another week then drop it down to 10000 again. Batch I am sceduling a blood test just so you/we can keep adding data to this and help others.  You all have a great (hopefully) pain free day.

Todd

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Oct 8th, 2011 at 3:54pm
Hey Todd,

Outstanding sitrep...  and good on you for scheduling the 25(OH)D test.  We need all the data points possible to determine the optimum therapeutic range for CH'ers.

I've been PF for a year and 4 days on this regimen.  :)

Take care and thanks again for the update.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by indigotony on Oct 9th, 2011 at 3:32am
Hi
The beast returned 10 days ago
3 a night 6 to 7 on the kip scale
Not on meds apart from rizatriptan
Started the omega 3 and multiple vitamins 3 days ago, now got d3, 2200iu, start them today,
Also had a bath in Epsom salts, another post.
Last night, sleep, all night, awoke feeling great.
I hope it continues, thanks for the tip
Tony

Title: Re: 123 Days PF And I Think I know Why
Post by British Isles on Oct 9th, 2011 at 2:43pm
Congrates on finding a way to destroy the beast. I have tried that method and it kinda helped me for a while. Now I go to a acupuncturist and get 4 shots of 1cc of vitamin E to the nerve bundles above my eye and in my temple and so far no attacks for two years.
It feels great to know that you don't have to experience the pain anymore!!!!

Title: Re: 123 Days PF And I Think I know Why
Post by Dirty on Oct 16th, 2011 at 4:43pm
I am new here and have a lot more reading to do.  I just wanted to give my 2 cents.  On Friday of this week, I started taking omega-3 fish oil and vitamin D3 10,000IU. I am also on pridnisone, verapamil, redbull, Bronkaid and   exercise.  All I know is my KIP has gone way down.  I just had my daily afternoon attack.  I slamed monster energy drink and took a Bronkaid the minute I felt something weird  (a shadow).  The pain went to about a 4  and then the DIRTY cluster evaporated.  I didn't take a imitrex for the first time.  :-) i want to say something is finally working.  Could it be the vitamins already? or is my cycle ending? Only time will tell.

Title: Re: 123 Days PF And I Think I know Why
Post by Jair Crawford on Oct 17th, 2011 at 10:20pm
Ok, so, at one point this past August, I was taking about 15000 IU of D3. I think it was about a week or two at the most. I went down to 10000 IU though and then eventually down to 5000 (which I am still taking now) simply because I need to save money and ration my vitamins. LOL (I'm a college student. lol) But also, when I was taking the higher doses, I didn't really notice that much of a difference energy-wise. I know Batch, you said your wife is taking 15K and has more energy. I didn't really notice much difference at all. Was I simply not on the higher dose for long enough? Or was it because I hadn't added the Omega3 and the rest to the regimen?

Something I have noticed. (And for those who don't know, I don't use D3 for CH because I don't have CH, but I've heard so many good things about D3.) A lot of colds and bugs have been going around my school this year. At one point I got pretty stuffy and had some sinus pressure, but that's as bad as it got while everyone else was like, out sick. lol So, this stuff really does boost your immune system. That much is for sure. I'm noticing that even with just taking 5000 IU.

Another thing. I've been telling friends and familly about D3 and how they should take it for health benefits. Then I mention the number 10000 IU and they freak out and say that's too much. So, I tell them "No no no, you see, I was on this forum online..." and they're like O_O "A FORUM on the internet??? You NEVER get medical info on an online forum! Only trust professionals!" and they end up listening to their doctors that say 10000 IU is too much. -.- How do I convince people that their doctors are wrong and the internet (in this case) is right? LOL

Also Batch, have I ever told you that your avatar is made of pure epic win? I think I have. But I felt the need to say it again. XD

Title: Re: 123 Days PF And I Think I know Why
Post by Dirty on Oct 17th, 2011 at 11:00pm
Last Friday night I went to the er with a DIRTY CLUSTER 10 kip.  I told them what medication I was on (imitrex 100 mg TAB prescribed on 10/13/2011, prednisone 20 mg Tab prescribed on 10/10/2011 34 total pills starting with 4 a day then slowly dose down? , verapamil tab 120mg prescribed on 10/14/2011) and then they gave me an iv.  The cluster went away after 45 minutes and lots of throwing up.   I was released from the ER and about 3 to 4 hours later I had another 8 kip DIRTY cluster headache.  I did a lot of reading on here that night and Saturday morning I purchased and took the vitamins. I also purchased Bronkaid, and redbulls.  Anyway, I have not had a cluster headache.  My right eye doesn't feel blury and the right side of my brain feels great.  i actually enjoyed life a little today.  Also, I had 36 treximet tab pills that I had saved my last cluster attacks 18 months ago.  I had them stored in my safe.  When those pills ran out about 2 or 3 weeks ago, thats when I went to the comunity health center.  So I have been in my cycle for about 5 weeks I guess.  I am taking the prednisone and verapamil on top of the vitamins. Also redbulls and a total of 2 bronkaids tablets.   I was told my medication was low doses.  That is why I am posting.  my last cycle 18 months ago lasted a few weeks longer than this cycle at 5 weeks.  I honestly feel in my heart and soul the vitamins are the answer.  I have oxygen and imitrex on stand by though.  I have a doctors appointment tomorrow and I plan on stopping all medication soon.  Redbulls, exercise and vitamins are the route i'm going.  Any thoughts,  explanations, or input would be highly appreciated.  thanks in advance.  Hopefully no more DIRTY HEADACHES..............

Title: Re: 123 Days PF And I Think I know Why
Post by Jair Crawford on Oct 17th, 2011 at 11:10pm
@ Dirty, have you added the Magnesium and Calcium Citrate to your daily vitamins? Make sure you follow Batch's instructions very clearly with the formula. Very wise, he is.

Title: Re: 123 Days PF And I Think I know Why
Post by wolfpack on Oct 18th, 2011 at 5:54pm
This has not worked for me, in the least?  In fact, the CH'S seem to have gotten more severer.  6 weeks now on this regimen.  Maybe my blood pressure med and Zoloft, have something to do with it?? 
I am so happy it's helped some others though and I wish you all the best.  I get so anxious just to even sign on here, but I want to contribute in any way that I can, in hopes we will ALL have help in the near future! 

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Oct 18th, 2011 at 9:27pm
Welcome to the board Wolfpack, what else do you have to treat your CH? Oxygen? A good prevent med? As with it seems every other CH treatment, we haven't found anything that works for everyone, just the nature of the beast. But there's so much out there to try, would hate to see you miss out on any of the more popular treatments out there.

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by Dirty on Oct 19th, 2011 at 11:54am

Jair Crawford wrote on Oct 17th, 2011 at 11:10pm:
@ Dirty, have you added the Magnesium and Calcium Citrate to your daily vitamins? Make sure you follow Batch's instructions very clearly with the formula. Very wise, he is.


Before my cluster cycle even started I felt like chit a couple months ago.  Something was wrong with me but I couldn't explain it.  Then about 5 weeks ago my cycle started.  I started taking vitamins last Saturday morning after being released from the ER.  I have been pf since then and never felt better.  More energy and a positive outlook on life.   I haven't added the Magnesium and Calcium Citrate to my daily dose until today.

My doctor yesterday gave me a script for oxygen and imitrex for the next cycle even though I am pf. I figure I would stock pile up now.  At this time, I feel so good I don't need to make an appointment with the neurosurgeon.  My cycle is 5-8 weeks with clusters every 18 months for the last 10 years.  So in about 18 more months, I will know for sure if the vitamins are the miracle answer for me.  ;D  I will never stop taking the vitamins  8-)  Thanks for your help.  I LOVE YOU BATCH. LOl peace  :D

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Oct 19th, 2011 at 3:32pm
Interesting comments…  I'll start with the obligatory disclaimer that I'm not a doctor and you should see your PCP or neurologist about this regimen… 

Having said that, I did stay at a Holiday Inn a few years ago, and I'm a long time CH'er like many of you with the last six years as a chronic type averaging 3 CH/day over that period…  Fortunately, my CH aborted easily and rapidly with oxygen therapy at flow rates that support hyperventilation…  I took no other CH meds… 

All that ended last October, two days after I started this regimen…  I've been PF ever since…

I'll address your comments in order.

Tony, it's been over a week since your last post on this topic…  Howzit?  If you respond like 78% of the others who reported this regimen effective, you should be in tall cotton about now and free of the beast…  Please let us know…

Hey Dirty, I'm delighted at your response to vitamin D3 therapy and thank you for the kind words. 
Several of us experienced a favorable response to the anti-inflammatory regimen within 48 hours…  Most CH'ers who started this regimen experienced relief near the end of the second week, and a few have taken over a month…  As near as we can figure, this is likely due to the initial level of 25-Hydroxyvitamin D, a.k.a. 25(OH)D, the serum level metabolite of vitamin D3. 

The normal reference range for 25(OH)D is 100-200 nmol/L (40-80 ng/mL).  However, reports from CH'ers who have gone pain free on this regimen and had the 25(OH)D test done at the three month mark were mostly in the 150-225 nmol/L (60-90 ng/mL) range.  A few overshot this target range with 25(OH)D levels between 250 - 295 nmol/L with no adverse effects… 

There's also sufficient clinical evidence that indicates that it can take up to three months at a therapeutic dose of 10,000 I.U. vitamin D3 to elevate 25(OH)D levels from 50 nmol/L up to 150 nmol/L.

Jair, Good point about taking the calcium and magnesium supplements…  Both are important when taking vitamin D3.  The vitamin D3 Council suggests a total daily intake of magnesium at 500 to 700 mg.  Given magnesium is present in green veggies, a daily supplement of 400 mg. magnesium should be sufficient.  They also recommend zinc and vitamin K as the other two cofactors that help the body metabolize vitamin D3 into 25(OH)D and process it effectively.

There's also nothing scary about a vitamin D3 dose of 5,000 to 10,000 I.U./day or 25(OH)D levels in the 150-225 nmol/L range as they're consistent with measurements taken on lifeguards who spend an average of 6 hours in the sun.

25(OH)D levels this high are also well below the toxicity threshold range of 500-750 nmol/L, (200-250 ng/mL).  If your 25(OH)D level climbs to the 200-225 nmol/L range, or you've been on this regimen for three months, whichever occurs first, lower the daily dose of vitamin D3 to 5,000 I.U. 

A bathing suit clad person's skin can make 5,000 to 10,000 I.U. of vitamin D3 in as little as 30 minutes exposure to the UVB in direct sunlight….  There are studies that prove this as well…

Folks at the Vitamin D Council also have evidence from studies to substantiate the fact that we normally metabolize the equivalent of 3000 to 5000 I.U. vitamin D3 a day…  That makes a daily intake of 5,000 I.U. vitamin D3, a maintenance dose.

See the following link for the Vitamin D3 Council page on vitamin D3 intoxication. If you read through all the tabs on this site, you'll be an expert on how to supplement with vitamin D3:

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As far as taking this regimen along with other CH meds goes… There shouldn't be any problems.  There are no significant contraindications listed…  Prednisone may slow the rate at which vitamin D3 is metabolized into 25(OH)D, but a therapeutic dose of vitamin D3 at 10,000 I.U./day should provide a sufficient margin.

In addition, taking the calcium supplements in this regimen may lessen the therapeutic effect of verapamil.  Having said that, the data collected in this area came from a clinical study of heart patients taking verapamil…  not CH'ers…  Taking the calcium and fast acting verapamil 8 to 10 hours apart should help prevent any significant interference between the two.

Hey Wolfpack, let me echo Joe's Welcome Aboard…  and hang in there…  A couple of CH'ers were on this regimen for nearly two months before they started having a favorable response…  Both were chronic so the cessation of their CH wasn't due to end of cycle.

The best course of action is to see your doctor and have the 25(OH)D lab test done… You may as well ask for a chemistry panel + complete blood count (CBC) at the same time.  This will give you and your doctor a good look at your 25(OH)D level as well as electrolytes, calcium and other values to make sure there are no other deficiencies or insufficiencies.

If you haven't had a favorable response by the three-month mark or have been your doctor for the 25(OH)D test, drop the daily vitamin D3 intake to 5,000 I.U.

Also remember, this regimen is not 100% effective for everyone.  Like Joe said, "we haven't found anything that works for everyone…"  To that I'll add… we're getting close.  We have a few CH'ers with 25(OH)D levels above the optimum range of 150-225 nmol/L who have experienced a marked reduction in CH frequency and severity, but still have occasional low level CH.

Why this happens and why some CH'ers do not have a favorable response to this regimen even with 25(OH)D levels in the optimum range is clearly the subject of further research.  A low arterial pH from diet or another conditions is a possible reason.  Comorbid disorders like thyroid insufficiencies may also play a roll.  The sooner we get this regimen into a formal clinical study, the better.
 
This is still a healthy regimen worth taking even if it doesn't prevent CH.  All you need to do is compare its risk-reward ratio with verapamil and some of the other off-label CH preventatives…   

Moreover, even though this regimen didn't prevent CH completely for some, they felt it reduced the frequency and severity to a level that gave them back a quality of life they didn't think possible with CH. 

They also report other favorable responses to this regimen such as fewer colds, they sleep better, depression is gone, more energy, and an overall sensation of wellness.  What's not to like about that? 

See your PCP or neurologist for the 25(OH)D lab test then take it from there…

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Jair Crawford on Oct 19th, 2011 at 7:04pm
Ok so do you think the reason that I wasn't really 'noticing' anything with the higher dose of D3 was because all I was taking was the D3 alone, without the Omega3, Magnesium, and Calcium Citrate?

And thanks for the links! Hopefully that'll convince people that D3 really isn't as easy to OD on as they think. lol

Title: Re: 123 Days PF And I Think I know Why
Post by wolfpack on Oct 19th, 2011 at 7:29pm
Thanks for the words of encouragement!  I REALLY appreciate it!  Called the doc for another round of Prednisone today and will start Depakote (haven't been on this for 2 years) once I am finished with the Predisnone.

I will continue with the regimen.  Maybe I am a "slow" taker! Today, I skipped everything.  Used my Zomig nasal spray about 3:00.  These have been the difference from going insane or leading a "so called" normal life.

What I don't get is this?  What are the ingredients of Predisone that makes "the Beast" disappear? And, the RedBulls?  There seems to be this nerve that is ending up somewhere that it shouldn't be on the right side of my eye.  It's been 8 years now and I feel like I have tried everything!!

Yes, got my physical last year and vitamin d was very low.  So, started getting that corrected. Saw another study about testosterone.  Mine was extremely low (I am 45) . Started that regimen and the "beast" was gone for almost a year, so I thought that was the answer, but then it returned.  Testy levels are norm now, but the CH's are still around. 

There has got to be something with the ingredients that help us:  Testy Med's, RedBull, Prednisone, Vitamin D3, Calcium?? What is the combo between these things?? 

Will report back.  And again, I am so thankful to all of you that are giving suggestions/ideas to help us ALL!

Title: Re: 123 Days PF And I Think I know Why
Post by Mike NZ on Oct 19th, 2011 at 11:04pm

wolfpack wrote on Oct 19th, 2011 at 7:29pm:
Called the doc for another round of Prednisone today and will start Depakote (haven't been on this for 2 years) once I am finished with the Predisnone.


You normally start the two preventives at once, with the prednisione being effective until the other has chance to build up. Check with your doctor about what you should be taking and when.


wolfpack wrote on Oct 19th, 2011 at 7:29pm:
What are the ingredients of Predisone that makes "the Beast" disappear? And, the RedBulls?


For Red Bull it's the caffeine and taurine that do the "magic". I'm sure that the carbonation helps increate teh rate at which they are absorbed, making them effective quicker.

Title: Re: 123 Days PF And I Think I know Why
Post by Brew on Oct 19th, 2011 at 11:38pm

Quote:
Prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug. It is used to treat certain inflammatory diseases and (at higher doses) some types of cancer, but has significant adverse effects. Because it suppresses the immune system, it leaves patients more susceptible to infections.

It is usually taken orally but can be delivered by intramuscular injection or intravenous injection. It has a mainly glucocorticoid effect. Prednisone is a prodrug that is converted by the liver into prednisolone, which is the active drug and also a steroid.

Title: Re: 123 Days PF And I Think I know Why
Post by lsarver3808 on Oct 25th, 2011 at 7:37am
Start my husband on this on Saturday.  Didn't add the calcium citrate until yesterday as I had a brain fart and missed it.  Since then he as slept through the night every night.  Has had some other hits though.  This cycle was acting strange to start with.  He is about 1.5 weeks into a usual 5-6 week cycle.  Obviously hoping that adding the missing factor will make things even better.  When I say this cycle was acting strange, I mean  he was getting hits but they were lower level on the kip scale.  They didn't ramp up like they usually do.  The night before he started Batch's program, he was up every 2 hours getting hits all night long though which was the worst it had gotten thus far in this cycle.  Since then, he has only gotten 1 hit per day, last night was a bad one though.  My fingers and toes are crossed that this will work for him....Will update more when a little further into this cycle.

Title: Re: 123 Days PF And I Think I know Why
Post by wildhaus on Oct 25th, 2011 at 1:34pm
Started on Pets’s regime….. not voluntarily…..  it was rather a complot between my wife (Marta) and Pete… 

the disadvantages of the fast communication (e-mail  / Skype etc.)

Marta  had all the remedies shipped Fed Ex or DHL (don’t know)  from the USA to Switzerland…..

now I am on a strict regime – and under tight control….. 

Pete, wonder if I will see a “wonder”….. or even just a small improvement…..  it will be very welcome.

Michael



Pete, big fonts....  ::)

Title: Re: 123 Days PF And I Think I know Why
Post by Jimi on Oct 25th, 2011 at 3:29pm
I hear a voice crying out from the wilderness. :)

Hello Michael. [smiley=wave.gif]

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Oct 25th, 2011 at 10:58pm
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 Ya gotta love a smart wife...

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Oct 27th, 2011 at 11:04am
Hi Batch, and gang.

Batch, it is amazing and wonderful to hear you have been PF for a year!!

I tried this regimen several months ago, but the Vitamin D3 clashed with my high dose of Topiramate, and the result was it turned my urine on fire. During the time I was able to take it, it did seem to take affect within 2-3 days, and did seem to flat-line the demon.

But, here I am, several months on and have increased my Topiramate to 400mg a day, and I'm still getting attacks, well, I wish I could say I were still getting them at my normal rate of every 3 days. But they are really more often than that.

So, I'm going to wean myself off Topiramate and give this this regimen a try. And you know, I actually have more faith in this than anything else at the moment.

xx Renée

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Oct 28th, 2011 at 10:02pm
Over 1 month ago started this regimen with 15K IU D3, Magnesium Citrate 500MG, Omega3 3600MG, Calcium Citrate 500MG, all washed down w/ a tall glass of lemonade containing 12% juice with dinner.

Still no relief and am in very high cycle.

Got online and went to LabsMD at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE and ordered the 25(OH) D test for this Monday.  Cost $59 bucks and should post findings on this thread no later than Wednesday.

Title: Re: 123 Days PF And I Think I know Why
Post by Kudzu on Oct 29th, 2011 at 9:25pm
Been suffering with CH for years now.  Realized this past week that the headaches I was getting in the Navy after swimming were minor CH.  I've been on Verapamil and Imitrex for three years now.  Last week it's as if I hadn't been taking anything.  A 9-10 hit.  It was about 6pm and my wife was up and got to experience the whole begging for mercy.  Decided to come back here and see if there was any other meds and found this thread.  Started the regimen immediately but without the Calcium.  I assumed one of my joint pills was calcium.  I suffered a 5 at 6am on Thursday.  That night my wife and I bought exactly what we needed and I started the official regimen Thursday night.  Cycle should be in full effect but seems to have just stopped.  By this point I should have had a CH Thu, Fri, and today but so far so good.

Thanks so much, so far for the work on this.  I have not been able to carry any significant amount of sick or annual leave because of CH.  Even cost me a job almost 10 years ago.  I was very nervous because I just started a new job and the dragon awoke with a vengeance.  Who knew the dragon just needed to be fed some vitamins/minerals?

Anyhow, I will keep taking this because I prefer this regimen than the Verapamil/Imitrex + whatever else they decide to give me.  My neurologist is good and open to new ideas so I will share with her on Tuesday.  Not enough time to prove much of anything but as long as I'm pain free, I'm happy...so is my wife.  :)

Title: Re: 123 Days PF And I Think I know Why
Post by tgdurst on Oct 30th, 2011 at 12:32pm
Batch just checking in. I am STILL pain free THANK GOD (and Batch) and I got my blood test about 2 weeks ago and have yet to get it from my Dr. after 3 phone calls and 3 emails etc. I WILL get them this week and post the D3 results here.

Title: Re: 123 Days PF And I Think I know Why
Post by tgdurst on Oct 31st, 2011 at 5:54am
Name                                   Value              Reference Range
Vitamin D, 25-Hydroxy            63.0            32.0-100.0 ng/mL

and as if by magic it comes this AM. It looks good now.. I have/had no frame of reference to start from though but I am sure it was not within range.

Title: Re: 123 Days PF And I Think I know Why
Post by ClusteredChef on Oct 31st, 2011 at 10:00pm
Hey all, I've taken the time to read this whole thread. It seems your definitely on to something here. I to have started the regimen 2 days ago. However my cycle appears to be winding down as the daily attacks had stopped and was enjoying PFDAN here and there for a couple of days at a time. I was attacked the first night but last night was PF.
I'm a big guy 6'2" over 250# So I went with 20000 IU D3, 4800mg Omega 3, Magnesium Citrate 400mg in pill form in the morning and 375mg at nite in the form of a powder drink mix at night, Calcium Citrate formulated with Mag, zinc, and D3 500mg. Everything seems to be going better. Last night I slept like a baby. During my cycles I don't ever sleep well even on PF nights. Its like I wake myself up just to make sure I'm not in pain. I do this every 90 mins-2 hrs. And as we all know how much of a toll that puts on you after awhile.

Thank you to everyone who has made this site possible. Before I found it I was a wits end. I was really close to being another statistic to the nickname of these damn headaches. This site and the people involved with it have given me hope and that really means alot when you become that desperate. Thank you all.

Wishing all PFDAN
Daivd

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Nov 2nd, 2011 at 7:51pm

LasVegas wrote on Oct 28th, 2011 at 10:02pm:
Over 1 month ago started this regimen with 15K IU D3, Magnesium Citrate 500MG, Omega3 3600MG, Calcium Citrate 500MG, all washed down w/ a tall glass of lemonade containing 12% juice with dinner.

Still no relief and am in very high cycle.

Got online and went to LabsMD at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE and ordered the 25(OH) D test for this Monday.  Cost $59 bucks and should post findings on this thread no later than Wednesday.



Yesterday after they drew my blood, was told results could take up to 9 days.  Just received results in less than 24 hours.  Truly exceptional company and highly recommend-see link above.
----------------------------------------------------------------
"Result: 103.0 HIGH
Reference Interval: 32.0--100.0

Effective 11/21/2011, Vitamin D, 25-Hydroxy reference intervals will be changing to 30--100

Recent studies consider the lower limit of 32.0 ng/mL to be a threshold for optimal health.
Hollis BW.  J Nutr.  2005 Feb;135(2) :317-22."
----------------------------------------------------------------
About 6 or 7 weeks of this anti-inflammatory regimen and am in high cycle with 6 to 12 attacks daily.  Obviously no benefit thus far but will continue in hope it eventually helps.

Title: Re: 123 Days PF And I Think I know Why
Post by wildhaus on Nov 3rd, 2011 at 2:03pm
Hi all,

I am now just over 3 weeks into Pete's and my wife's CH - [pH] boot camp therapy..
It seems as things are somewhat better, hardly any day time CH episodes, And if day episode, a low level and short, easily treated with O2, at 40lpm. Within 5 min. including extra time to abort, not only the symptoms (pain),but the cause!

As for the night, don't have it totally under control, pain level during a CH episode is distinctively diminished and easily treated with O2, at 40lpm. Within 5 min. including extra time to abort, not only the  symptoms (pain),but the cause!

It is too short of an experience, to pass an objective and realistic
statement,it does seem to work, and provide the sought-after relief (partial relief),even if it is just the placebo effect.

Open is the lab work, testing and supervising the various levels cardinal to This procedure, as well as avoiding any adverse effect that might accrue.   

I would like to point out:

•      The anti-inflammatory properties of Omega 3 Fish Oil and the synergistic effect of the calcium citrate in this regimen on CH when taken together juice high in citric acid to lower arterial pH may be playing an important role in lowering the frequency and severity of my CH.

•      I'm already dosing continuously on vitamin D3 and calcium due to osteoporosis due to an allergic reaction resulting from the betamethasone used in the occipital nerve blocks I was having to combat CH.  The D3 is coming from an implanted reservoir and not orally...  The vitamin D3 reservoir has been keeping my 25(OH)D well within the normal reference range.

•      As a 7/24 chronic heavy hitter for over 5 years, I've tried everything including a greater occipital nerve implant stimulator and I was still getting slammed...  After three weeks on this regimen, I'm experiencing a noticeable reduction in the frequency and severity of my CH.

•      I [try to] remain objective...  My CH are not gone, but they are clearly less frequent, less severe and easily  manageable with oxygen therapy at 40 lpm... Perhaps giving my body what it needs to combat CH is a better course of action than using the nuclear option on the symptoms...


And back to work and sore the sky with a sailplane……… and my obscurity…..



Michael


Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Nov 4th, 2011 at 6:07am
Todd, Kudzu, Gregg, ClusteredChef, and Michael,

Thank you for the SITREPs and the results of your 25(OH)D labs while on the anti-inflammatory regimen.  This is really helping to define the optimum 25(OH)D range for CH'ers and the efficacy of this regimen.  That includes reports that "It's not working" or "No Change" as they help define the lower bounds.

I've been collecting data on 25(OH)D levels reported here at CH.com and by direct email with respect to CH activity for the last few months.   

For the CH'ers who were experiencing active CH attacks and had the lab test for 25(OH)D done either before starting this regimen or within a few days after starting it.  So far, all were ≤ 105 nmol/L (42 ng/mL).  In short, this data supports a general statement, that all of the CH'ers who reported their results of this lab test with active CH, were vitamin D3 deficient... 

Think about that for a minute... Is the relationship coincidental as most of us are vitamin D3 deficient unless we're supplementing or one of the outside trades out in the sun with skin exposed for several hours a day... or is the relationship causal? 

Could CH be like Rickets where a vitamin D deficiency or impaired metabolism of vitamin D3 causes a softening of bones in children...  or in our case, where something in the pathophysiology of cluster headache is enabled by the same deficiency or impaired metabolism of vitamin D3, magnesium, phosphorus or calcium?   You decide...

CH'ers who have gone pain free dosing on vitamin D3 at 10,000 I.U./day and had this test done after 30 to 90 days while on this regimen reported 25(OH)D levels in a range of 150 nmol/L, (60 ng/mL) up to 225 nmol/L, (90 ng/mL)...  Todd, you're in the zone...  Good on you... 

We still have exceptions...  One CH'er who has been working closely with his primary care physician and having his 25(OH)D as well as Chem panel and CBC tests done monthly, reported his 25(OH)D at 295 nmol/L (118 ng/mL) at the 90 day mark while dosing at 10,000 IU/day vitamin D3. 

As high as these levels may sound, they're well below the vitamin D3 intoxication threshold of 500 nmol/L (200 ng/mL).  Although he's not completely free of his CH, he's not lost any time away from work because of them and the few CH he does have are easily managed with oxygen therapy. 

We're learning a lot about the effect of this regimen on CH... and there's clearly more to be learned.  Time to a therapeutic response, (experiencing a significant reduction in the frequency and severity of their CH or going pain free), has been reported by most at between two days and three weeks with the majority experiencing relief from their CH by the end of the second week.  A few have taken longer.

We've also learned from a number of studies that we would need to take significantly higher doses of vitamin D3 than 10,000 I.U./day to reach the lower threshold for vitamin D3 intoxication. 

The Vitamin D Council at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE lists the toxicity threshold level at 500-750 nmol/L, (200-250 ng/mL).  Lots of great information about vitamin D3 and the cofactor mineral supplements on this site.

Another great site for vitamin D3 information is Grassroots Health at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Their home page features a plot of 3667 people who have had lab tests for 25(OH)D collected every six months during their participation in an international survey hosted by GrassRoots Health that started in 2008. 

The voluntary participants in this survey have been taking a range of vitamin D3 doses from zero to 10,000 I.U./day while having their 25(OH)D level tested every six months.  There's a $60 fee each 6 months for sponsorship in the 5 year project which includes a complete new 25(OH)D test kit, new questionnaire entry and reporting of results.

The most significant finding from this survey is all participants dosing at ≤ 10.000 I.U./day vitamin D3 have remained below the vitamin D3 intoxication threshold of 500 nmol/L (200 ng/mL) 25(OH)D.

I found the attached paper on Anticancer Research titled: Vitamin D Supplement Doses and Serum 25-Hydroxyvitamin D in the Range Associated with Cancer Prevention that used data from the GrassrootsHealth survey above.  It has a table that shows that over 300 participants have been dosing at 10,000 IU/day as illustrated in the graph on the GrassrootsHealth home page, many for more than a year at this point...  and all remain below the vitamin D3 threshold for toxicity. 

I've sent the authors of this paper an email asking for a breakout of participants dosing at 10,000 I.U./day with their 25(OH)D response curve over time in six-month increments as far out in months as the data supports... I'll let you know if and how they respond...

The raw efficacy of the anti-inflammatory regimen as a CH preventative is encouraging...  As of the end of October, nearly 100 CH'ers have reported starting this regimen here at CH.com, at ClusterBusters, or directly to me by email.  70% reported a significant reduction in the frequency and severity of their CH and most of them have gone pain free. 

Granted these results are anecdotal and some of the successes could be due to end of cycle or to a lesser extent, the placebo effect... as Michael pointed out.  Nonetheless, the dramatic change in quality of life experienced by the 70% while on this regimen is difficult to explain any other way...

9 CH'ers have reported it didn't work and stopped taking the regimen.  None of them reported having their 25(OH)D levels tested.  4 of these 9 gave up after two weeks.  2 of the 9 may have experienced allergic reactions to one or more of the anti-inflammatory regimen supplements.  The remaining 3 reported other medical problems.  It's possible that some comorbid conditions interfere with this regimen. 

It's comments like this that add more definition to the efficacy not to mention good reason to see your PCP or neurologist about this regimen.  And when you do, have the 25(OH)D and other labs done if you've been on this regimen for more than a month and have not experienced a reduction in the frequency or intensity of your CH.

The remaining 21% are still in the hunt.  They haven't experienced the same favorable response as the others, but they're still taking this regimen... and building 25(OH)D levels...  That implies a margin of uncertainty to the 70% efficacy of ±21% as these CH'ers could go either way...

The simple fact is we don't know if CH'ers in this category are going to respond more completely or not at all to higher 25(OH)D levels.  The good news is the Grassroots Health data appears to give us room to try without fear of experiencing vitamin D3 intoxication...

That said, even though dosing on vitamin D3 at 10,000 I.U./day is far less risky than taking verapamil, depakote (Valproic Acid), or the off-label anticonvulsants frequently prescribed to prevent CH... pushing 25(OH)D levels higher than 200 nmol/L (80 ng/mL) should be done under a physician's supervision with monthly labs for 25(OH)D, Chemistry Panel and CBC.

I think Michael hit on an important point...  Giving our body what it needs to combat CH may be a lot better than taking the more invasive prescription medications with onerous side effects to control the symptoms...

That brings me to the closing point... I'm just an old retired fighter pilot and not a doctor even though I did stay at a Holiday Inn a few years ago...  but I've learned a few things over the years that tend to keep life in balance...  A 70% solution is like low hanging fruit... if it works...  go for it and stick with it...  If you screw up...  unscrew it if possible... 

Moreover, one of life's more enjoyable moments for a pilot is walking out the door saying... "I'm out to launch" like Michael did... then take a sail plane up for a few hours of breathtaking circuits over the Alps... with only the sound of your breath and wind over the canopy in your ears... Awesome...

There's little in life that compares with strapping on an aircraft and slipped the surely bonds... as the prayer goes...  Flying through the sky leaving life's problems behind you on the ground does something to you... 

The joy of flying and sense of freedom it brings is so exhilarating it leaves you with a heightened sense of awareness... In that respect, it's a lot like going pain free from cluster headaches and knowing why... You're in control...

Thanks again and take care.

V/R, Batch

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=12928garland021811-D3vs25_OH_D.pdf (121 KB | 3 )

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Nov 4th, 2011 at 7:10am
Hi Batch

I think that the remaining 30 % that haven't experienced the same favorable response could be that they still using drugs like prednisolone etc.. One of the actions of vitamin-D is to get rid of synthetic components in the body. Therefor you often see that prednisolone users have very low level of vitamin-D. Studies have also shown that drugs don't have the same affect in the summer period do to higher vitamin-D level.

Title: Re: 123 Days PF And I Think I know Why
Post by SD1 on Nov 5th, 2011 at 4:01pm
Hello to all. My previous episode of clusters was back in march/April of this year. I started taking 10,000 d3 and 3600 omega 3. Upon 2 days of doing so, my cluster faded and in less than a week, they were gone. Life was great. On may 31st, my wife gave birth to a beautiful baby girl. I felt like Batch had saved me just in time. Fast forward to last Friday, October the 28th. I woke up at 3am with a very minor kip 1/2. Wasn't even sure if it was a cluster. I was able to lay back down and fell asleep again. The next couple nights, awoke with kip 3/4s. Hit the oxygen and was able to sleep. Came back here to read up to see if anyone else has had the beast returned and noticed that I was missing a big part of of the regimen.  I added calcium citrate with mag and zinc to my daily routine. It was 2 days of doing so, and I only had minor Clusters. Then, at about 12:30 last night, I was hit with an 8/9 for 2 hours. I tried O2 3 times and even took an imitrex. Nothing helped. My wife sat up with me while the baby slept. As soon as the beast left, I was exhausted and wanted to finally sleep, but my daughter woke up and it was my turn to take care of her since my wife had to work in the early morning. Sorry for the ramble. It just makes me nervous to be in full blown season again with a baby that counts on me to be able to provide care. Has anyone else that had prior success have the beast return? Is there something I should be doing that I'm not? Any suggestions are greatly appreciated.

FYI, 90% of my season have been left side. This time around, right side. Not taking verapamil or anything else.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Nov 6th, 2011 at 5:32pm
SD1,

Thanks for the SITREP...  You've provided a new datum and another dimension to the range of effectiveness this regimen has to prevent CH.  I read all the posts on this regimen I can find.  So far, you're the first that's had a relapse while still taking it.  There's usually a reason for a change in CH patterns like this...  The trick is to determine what it is... then do something about it.

From the information I've collected so far, it's clear there are limits to the effectiveness of this regimen as an anti-inflammatory.  If you compare it with a prednisone taper... we found that during the Cluster Headache Survey 1134 of us took in late 2008, 384 (56.39%) out of 681 rated it as effective.  So far, 70 out of 100 have CH'ers have rated the anti-inflammatory regimen effective.

Increasing the vitamin D3 dose above 10,000 IU/day doesn't appear to increase effectiveness and the data is still inconclusive as to higher doses working faster.

However, adding the Omega 3 Fish oil, another anti-inflammatory, along with the calcium citrate, magnesium and zinc, known vitamin D3 cofactors, did increase the overall effectiveness of vitamin D3.

Several CH'ers found that taking juice high in citric acid along with the calcium citrate helped as well.  As this combination forms a buffer that can elevate arterial pH, it suggests the two mechanisms in play that this regimen can alter to provide relief from CH are neurogenic inflammation and a low arterial pH.

That said, here are a few things I would try in the event of a relapse: 

For starters, I would have my doctor order the lab test for 25(OH)D, or I would go on the Internet and order this test from one of the on-line medical labs. I've found there are essentially two methods for this test you can order.  One requires you to go to a local facility for a blood draw and the other uses a blood spot test kit they mail to you so you can do the collection yourself at home with a small blood spot then mail the dried blood spot back for analysis...

Seeing your doctor for a Chemistry panel and CBC lab test is also a good idea.  These lab tests can provide you and your doctor with calcium and electrolyte levels as well as other indications of potential comorbid conditions that may be interfering with this regimen.

Knowing your actual 25(OH)D level will help.  The experts who have studied thousands of people taking oral vitamin D3 at doses up to 10,000 IU/day, say that serum level concentrations of 25(OH)D stop climbing and level off after 5 months at vitamin D3 doses of 5,000 to 10,000 IU/day. 

They also indicated the mean 25(OH)D level after 5 months at a daily dose of 10,000 IU/day would be 225 nmol/L, (90 ng/mL), or equal to that of a Southern California life guard, but that variations in rates of metabolism and other factors could push this level up to as high as 300-350 nmol/L, (120-140 ng/mL).  They were also emphatic in saying that in all the test data they'd observed for vitamin D3 doses up to 10,000 IU/day, all were safely below the lower threshold for vitamin D3 intoxication at 500-700 nmol/L, (200-280 ng/ml).

The next thing I would try is taking the calcium citrate with lemonade, limeade, or another fruit juice high in citric acid.  If I was already doing this, I would add another one or two of the calcium citrate tablets along with the fruit juice for a week or two in order to increase the buffering effect.

One of the indications that a low arterial pH may be the culprit is oxygen therapy becomes less effective and aborts take much longer when arterial pH is low.  This happens even when using oxygen flow rates that support hyperventilation using proper breathing techniques.

If that didn't work I would try benadryl (diphenhydramine), an antihistamine, in case an allergic reaction was interfering with the anti-inflammatory regimen.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Nov 6th, 2011 at 5:47pm
How does this anti-inflammatory regimen interact with Verapamil?  Calcium citrate?  Dosage times of day to benefit most?  etc.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Nov 7th, 2011 at 5:30am

LasVegas wrote on Nov 6th, 2011 at 5:47pm:
How does this anti-inflammatory regimen interact with Verapamil?  Calcium citrate?  Dosage times of day to benefit most?  etc.


There's the beauty of naturally occurring supplements...  there are very few contraindications...   That said, this is is a good question to ask the physician who prescribed verapamil for your CH...  Your physician will likely say take them at different times to lessen any possible interference... 

A search of available open source information on the supplements in this regimen turned up very little and when you consider the fact that even water can be hazardous if you drink too much...  the phrase "all things in moderation" comes to mind.

The only thing that rang a bell was a moderate contraindication between verapamil and calcium supplements as you pointed out in your question... 

In the process of running this contraindication to ground I found the following on the Mayo Clinic site:

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"When given through an intravenous (IV) line, calcium may decrease the effects of calcium channel blockers, such as nifedipine (Adalat, Procardia), verapamil (Calan, Covera-HS, others), diltiazem (Cardizem, Dilacor XR, others) and others. In fact, IV calcium is used to help reverse calcium channel blocker overdose. There's no evidence that oral calcium supplements interfere with calcium channel blockers. To be safe, check your blood pressure regularly if taking calcium channel blockers and calcium supplements at the same time."

The only other note of caution should go without saying...  See your primary care physician or go to the ER if you think you're having a reaction to any medication including the supplements in this regimen.

Hope this helps.

Take care,

V/R, Batch


Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Nov 7th, 2011 at 11:42am
Thanks for your reply Batch!

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Nov 7th, 2011 at 12:18pm
The only mistake in this treatment is to add calcium citrate. This is usually not necessary if you get enough from your diet, which most do. One of the actions of vitamin D is that you absorb more calcium from your diet and an extra supplements will only increase the risk of developing heart / vascular diseases.  ;)

Title: Re: 123 Days PF And I Think I know Why
Post by SD1 on Nov 7th, 2011 at 12:29pm
Batch, thank you so much for the response.  Ive been on the calcium citrate, mag, zinc for a few days and still waking up with clusters.  I am also inquiring with my Dr. to have Ph levels measured.  I will pick up some lemonade today and see how I do with that.  I was hit last night but was able to abort with O2 only to have it return about 2 hours later in which I took an imitrex and hit the O2 again.  I was good about 30 min later.  One thing that I have noticed is that I am only being attacked at night.  Shortly after I fall asleep. Previous seasons have been both day and night.  During the day, not even a shadow.  And as mentioned before, this time around is on the opposite side of the head for me than normal (right side).  I've been holding off taking verapimil and even the water treatment (both have done well for me in the past) to try to see if I can get the vitamin d regimen dialed in.  Again, thank you and I will keep you posted. 

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Nov 7th, 2011 at 12:58pm
SD1,
I'm going to chime in here and others may pickup addtl advice.  I have been on this anti-inflammatory regimen for almost 2 months and have not received any benefit to my CH's whatsoever.  In fact my attacks have gotten more intense and more frequent in these past few weeks.

Even though I have not received CH benefit from this regimen, I still swallow my 13 tablets on a daily basis in hopes it helps my CH's.  Regardless of CH's, this regimen is natural and healthy for other areas of my body.

I too had the same thought as you....hold off on the Verapamil in hopes this natural anti-inflammatory regimen kicks in fast as reported beneficial to others. 

For me, this was a torturous mistake!  I am in week 13 of a very high cycle (8+ attacks daily) and started Verapamil last week which I understand may take 2 weeks to hopefully become effective.  I waited to start the Verapamil as I would prefer something non-harmful such as this regimen opposed to Verapamil which does have medical risks/side effects to the user.  I'm sure you can easily do the math, I have regretfully gambled on this regimen, holding off on Verapamil, while being tortured many times daily for many weeks in hopes this regimen would help. 

My experience gambling on this regimen, holding off on preventative meds such as Verapamil, has cost me thousands of dollars of time away from work, hostile conflicts with my boss and potentially being terminated from my job, a loss of 4+ yr relationship with girlfriend, countless nights sleep, public humiliation, unproductivity in every aspect of my life and extreme emotional stress to dear family.

Personally, I would not wait on holding off a transitional med (Prednisone taper) and preventative treatment (Verapamil, Lithium, etc) for your CH's in hopes this new regimen may/not work for you. 

What if you are like me and the regimen is not effective?  Then you just prolonged the torture by the DRAGON. 

The decision is obviously yours, but this is my unfortunate experience hoping this new regimen would be effective.  I personally could not endure the torture and be patient any longer for something that may/not be effective, and therefor started Verapamil which there is no guarantee this will be effective either, but has helped me in past cycles and has proven to be the best line of preventative defense for most CH sufferers.

Your night time attacks by the DRAGON are common because your co2 levels rise as you relax and go into REM sleep about an hour or two after you fall asleep. 

O2 therapy when used properly-hyperventilating with a NON-rebreather mask at high flow rates (25--40 lpm) should be of assistance with your night time attacks. 

O2 therapy requires ALOT of patience and ALOT of effort, particularly in middle of the night when you are very tired.

However, the alternative abort is a triptan med such as Imitrex injections which should abort the attack much faster than o2 without the time and effort, yet will most likely result in rebound attacks an hour later.

I am just one of few that this regimen has not proven beneficial, and it may very well provide relief for you as it has proven very effective for others, there is always hope!

That's my 2 cents...Good Luck!

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Nov 7th, 2011 at 2:01pm
Hi LasVegas

For some the  anti-inflammatory regimen can take up to 6 months to work. 

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Nov 7th, 2011 at 2:07pm

nhs wrote on Nov 7th, 2011 at 2:01pm:
Hi LasVegas

For some the  anti-inflammatory regimen can take up to 6 months to work. 


I'm not advocating not trying it, just sayin when one is cycle, might not want to gamble on this alone!

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Nov 7th, 2011 at 2:40pm
SD1,

The night CH attacks are a classic indication of low arterial pH and low oxygen levels.  When we sleep most of us go through a two hour cycle reaching REM sleep around an hour after falling asleep.  Not so strangely, that's when the CH hit...  The simple reason... and there are others...  is this, during sleep, our respiration rate drops to it's lowest with the smallest tidal volume of inspired breath... This results in less oxygen and a slight buildup of CO2.  For CH'ers, this is the perfect storm.

As CO2 disassociates into carbonic acid in blood serum...  this shifts the pH of arterial blood lower.  To make matters worse, a low arterial pH also limits the ability of hemoglobin to transport oxygen...  If you toss in a dietary condition or a comorbid condition that results in lower arterial pH, you're solidly behind the 8 ball and will get hammered.

Increasing the calcium citrate by a tablet or two and washing it down with lemonade will help elevate arterial pH.  There are alkalizing diets that will help as well.  See the chart for alkaline forming food types in the table at the end of the following link:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

As far as going in to see your doctor for a pH test...  it's a single shot in the dark that will only flag pH levels outside the reference range (7.35-7.45).  Our pH will flux widely throughout the day and from day to day. 

The best way I've found to track my pH is at home was using pH test strips to measure saliva pH.  It tends to parallel arterial pH but lags behind changes in arterial pH by 10 to 15 minutes, the time it takes the salivary glands to produce saliva from the blood stream.

I've an excel worksheet that will help track your daily average saliva pH by taking a measurement three times a day, morning before breakfast, around noon before lunch, and in the evening prior to going to bed.  When you average these three measurements you'll have a daily average.  Shoot me a PM with your email address and I'll send it to you.

The excel worksheet also has an entry for a pH measurement at the start of a CH attack and 5 minutes after completing an abort with oxygen therapy.  If you track your pH for a couple weeks you notice that as the daily average drops, the frequency of your CH will go up.  You'll also notice an increase in saliva pH (more alkaline) 5 minutes after you complete oxygen therapy.  All these entries will plot on another tab and will look like the following chart:

This chart covers a two week period where I took the three saliva pH measurements each day for my daily average saliva pH and also the pH changes associated with the first CH attack of the evening.

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The green line was my daily average pH.  The red line and dots represent saliva pH at start of a CH and the blue line and dots represent saliva pH 5 minutes after completing oxygen therapy.  The percentage figures represent the pulse oximetry readings taken upon waking with a CH and 5 minutes after completing oxygen therapy.

The link to PHION for the test strips follows:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Nov 7th, 2011 at 4:08pm
Hi Batch

Very interesting reading about the PH level and CH attach. One of the quickest ways to raise PH is to take a teaspoon of baking soda in a glass of water. Have you ever tried this doing a CH period?

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Nov 7th, 2011 at 6:38pm
No, but I chewed through a half bottle of Tums one night trying to get my stomach pH and calcium levels up after running out of oxygen... 

Calcium carbonate is nearly as good as sodium carbonate as an antacid and tastes a lot better...  I've found the buffering properties of calcium citrate and citric acid from lemonade last longer...

I was one hurt'en scooter that night after falling asleep following a particularly onerous hit only to wake up two hours later with another equally nasty hit in progress to find the cylinder pressure gauge on zero... 

I'd pulled a Delta Sierra and fallen asleep with the cylinder supply valve open with the regulator set at 25 liters/minute... 

I switched from 8 E-size to three M-size cylinders on hand the following morning and picked up a demand valve later that week.  A demand valve is great in that respect...  no suck... no flow...

Take care,

V/R, Batch


Title: Re: 123 Days PF And I Think I know Why
Post by lsarver3808 on Nov 9th, 2011 at 7:56am
Going to say this is not working for my husband.  Seemed it was making them lighter but he is now having the worst ever.
:(  I SOOOOO wish there were something I could do to help him!  This is horrible!

Title: Re: 123 Days PF And I Think I know Why
Post by anthony g on Nov 9th, 2011 at 8:30pm
I have been doin vit d3 10,000 iu and fishoil for well over a year. I dont really know if it helps or not. I still have headaches but perhaps they would be more frequent and intense if I havent been on the regime. The whole headache thing is so confusing and what works may not work for the next person. That being said there is certainly no damage from this regime and I will continue to do it. It hads helped alot of people on the board just wanted to give my input.
anthony

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Nov 25th, 2011 at 7:14pm
I had an attack today. It came from nowhere manifested itself as a mini-version of a cluster headache attack.  It lasted for less than 15 minutes.  I've had a few of those in the recent months, and I love them.  Not even sure if the correct term is 'shadow'. Whatever - these tiny things of no consequence is what is left of the mighty cluster beast that ravaged my life at will.  I believe it's more than a month since this last reminder, and much more than a month since the last real CH attack.

In fact I'm about to cross the 150 days line. It's almost 5 months since I started eating D-vit, magnesium, fish oil, calcium and zinc every day - the Batch regimen.  So yes, I love my tiny CH-attacks.  They remind me that I am still a CH sufferer, I'm still a chronic, it's not gone. But i can compare the last 5 months with 5 months preceding them. Take 30.jan to 30.jun Many of these ~150 days where true evil.  In two of those days I had more encounters with  You-Know-Who that I've had the last ~150 days. And that's quantity, as for quality: I've had 6 real attacks,. Non of them has justified a Imitrex injection but have been bearable with Red Bull,

I know it is still to early to  conclude, and I've read the remarks from experienced folks about the Beasts ability to morph.

But so far, so good - that is: SO GOOD.  And frankly, right now those insane clusternights seem unreal, like fiction

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Nov 26th, 2011 at 12:14pm

Zeitgeist wrote on Nov 25th, 2011 at 7:14pm:
I had an attack today. It came from nowhere manifested itself as a mini-version of a cluster headache attack.  It lasted for less than 15 minutes.  I've had a few of those in the recent months, and I love them.  Not even sure if the correct term is 'shadow'. Whatever - these tiny things of no consequence is what is left of the mighty cluster beast that ravaged my life at will.  I believe it's more than a month since this last reminder, and much more than a month since the last real CH attack.

In fact I'm about to cross the 150 days line. It's almost 5 months since I started eating D-vit, magnesium, fish oil, calcium and zinc every day - the Batch regimen.  So yes, I love my tiny CH-attacks.  They remind me that I am still a CH sufferer, I'm still a chronic, it's not gone. But i can compare the last 5 months with 5 months preceding them. Take 30.jan to 30.jun Many of these ~150 days where true evil.  In two of those days I had more encounters with  You-Know-Who that I've had the last ~150 days. And that's quantity, as for quality: I've had 6 real attacks,. Non of them has justified a Imitrex injection but have been bearable with Red Bull,

I know it is still to early to  conclude, and I've read the remarks from experienced folks about the Beasts ability to morph.

But so far, so good - that is: SO GOOD.  And frankly, right now those insane clusternights seem unreal, like fiction


I don't know if I should laugh or cry when you call a <15 minute cluster a mini-cluster and you are grateful for them. When I read posts on this board, and I see how bad 'true' cluster headache sufferer's have it, I my heart breaks for you. Nearly all my clusters are about 15 minutes long. The rare ones are 30 minutes long, or longer. When they first started, 5 years ago, they were 30-45 minutes, and sometimes longer. I know this might put me into the SUNCT category, but other characteristics about my clusters define them as clusters. My doc and I struggle to put a clear name on them, and the closest we come to is cluster. But short clusters.

The downside is, abortives don't work because there isn't time for them to take affect. But I digress.

I'm about 2 weeks away from being able to start on Batch's Regimen. I had tried it back in May, but the Vitamin D3 clashed heavily with the Topiramate I'm taking, turning my urine to fire. But in 2 weeks I'll be off Topiramate, and able to try the anti-inflammatory regimen properly.

Batch, or someone, could you post a very clear, concise recipe of what to take? I know the basic ingredients are Vitamin D3 (10,000 IU) Omega3 (3,000-4,000mg) zinc and magnesium. But I've never been clear on how much zinc and magnesium. Also, if it has changed in the year it has been around.

I'm chronic, and get clusters every 2-3 days on average. So if this works, and it seemed to last time I tried it, I'll know pretty quickly. I've had about 220 attacks so far this year.

Thanks,
Renée

Title: Re: 123 Days PF And I Think I know Why
Post by Tate on Nov 26th, 2011 at 12:29pm
Hi Renee,

I am on Topamax, but am planning on starting the Batch plan. Do you know if the experience you had with D3 and top is common?

Thanks and good luck to you!

Tate

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Nov 26th, 2011 at 2:49pm

Tate wrote on Nov 26th, 2011 at 12:29pm:
Hi Renee,

I am on Topamax, but am planning on starting the Batch plan. Do you know if the experience you had with D3 and top is common?

Thanks and good luck to you!

Tate



I don't know if it is common, when I mentioned it to my GP, she didn't know why my urine reacted that way. But, when I mentioned it to my neuro, he knew right away. 'Oh yeah, that would be the Topriamate reacting with the D3.'

If I built up the D3 slowly, it wasn't so bad. And even if I jumped up to 10,000IU, after 4 days, the burning would pass. But, if I missed even a single dose, it would take another 4 days to adjust again. And, it didn't burn when I went wee, but afterwards, after I left the toilet for about 5-10 minutes. Was really weird. It helped to use a wet wipe and not just TP.

My problem was, I was under a lot of stress at the time during a tough project, so had a lot going on, and just didn't need that on top of everything else. But now I'm in a better place.

xx

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Nov 26th, 2011 at 3:27pm
Hi Renée

What I meant with "mini cluster" goes for both intensity of pain and time. What I experience is undoubtedly a CH attack, but it is scaled down. 

The Batch regimen consists of two parts

1) D3 and co-factors

  • 5-10.000 IU vitamin D3
  • 500 mg magnesium (must be more if magnesium oxide is used due to very low bio availability)
  • 15-25 mg Zinc


2) Anti-inflammatory and PH regulating

  • 3000 mg Omega 3 fish oil
  • 500 mg Calcium (calcium citrate is what Batch uses)


Of those D3 and magnesium is the most important. If possible, take magnesium i two doses.

Rune


Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Nov 26th, 2011 at 4:56pm
Thank you. That is an excellent summary! I can work from that. Didn't know about the calcium, and didn't know the Magnesium was so important.

Right, I have a bit of shopping to do.

My clusters are short, but often ultra intense. In fact, I just had a 30 minute one I would class as a 10 on a scale of 10 (I don't use the KIP scale, but that probably works here). It's now an hour or so later, and I'm still recovering, eyes watering, and a total mess. The same is often true for the ones that last 5, 10 or 15 minutes. They can be really short, but knock me for a 6 and take a couple hours to recover from.

And I can have anywhere from 1-5 in a day, and I think the most I've had in 48 hours is about 12. Although, 1-3 is normal. Well, nothing is 'normal' for the demon. Just last quarter's routine.

Renee

Title: Re: 123 Days PF And I Think I know Why
Post by Tate on Nov 26th, 2011 at 5:11pm
I have been slowly moving towards adopting the PH Balance diet...all about acid and alkaline....what we are talking about here with the supplements. Have any of you tried this diet or the machine that balances your drinking water?

Tate :)

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Nov 26th, 2011 at 8:22pm
Hey ZG,

Another great update...  Thank you for telling us more about your experience with this regimen after 150 days.  This is important information for us.  So far, I've not seen any reports of a relapse after going pain free for more than a few days.  I've been on the anti-inflammatory regimen for over 13 months and have been pain free of my CH since the second day.

I've been in contact with the folks at GrassRootsHealth regarding their D*action Project where 3667 people volunteered to have their 25(OH)D levels tested every 6 months and fill out a questionnaire with each test.  Many of these people have been participating since the project started in 2008.

As you can see from the results plotted below tracking 25(OH)D serum levels vs vitamin D3 dose, none of the participants in this project have had any tests come back even close to the lower threshold for vitamin D3 intoxication at 200 ng/mL while dosing up to and including 10,000 IU/day.

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I've been in contact with Mia Ferreira, the Outreach Program Director at GrassRootsHealth, and she indicated there have been 436 individual participants who have completed at least one test/questionnaire indicating an intake of 10,000 IU/day or more. Of them, there have been 47 participants with at least two consecutive tests indicating an intake of 10,000 IU/day.  Again, none of the participants dosing on vitamin D3 at 10,000 IU/day have reported their 25(OH)D levels anywhere near the 200 ng/mL lower threshold for vitamin D3 intoxication.

I've also been in contact with Dr. Robert Heaney, MD.  He completed a study of three groups dosing on vitamin D3 at 1,000, 5,000 and 10,000 IU/day and a control group that didn't take any supplemental vitamin D3 over a five month period tracking their serum 25(OH)D levels periodically.  His results are illustrated in Figure-1 in the attachment below.  His study basically shows that 25(OH)D levels reach an equilibrium and plateau by the end of the 5th to 6th month.

Moreover, for the group dosing at 10,000 IU/day vitamin D3, the mean 25(OH)D level reached after 150 days was 90 ng/mL, (225 nmol/L).  For some of the CH'ers and their physicians who are concerned about 10,000 IU/day vitamin D3 being a high dose, this should be comforting information. 

Of course the best thing to do is to see your PCP or neurologist to have this lab test done 30 to 60 days after starting this regimen to be sure where you stand.

However, you need to be aware that although the reference range for this test is fairly standard among the medical diagnostic labs, these reference ranges are not calibrated for cluster headaches and they are also listed in two different units of measure, ng/mL here in the US and nmol/L in the EU and elsewhere... 

For example, one CH'er who had been on this regimen for over thirty days without any relief, had this test done and the results are shown below:

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He figured because the lab test said his 25(OH)D level was normal, the anti-inflammatory regimen wasn't going to work for him...

From the data on 25(OH)D levels we've collected so far, it appears several CH'ers with active CH are testing at 40 to 42 ng/mL, (100 nmol/L) and that of CH'ers who have gone pain free on this regimen and had this test, none are below 60 ng/mL, (150 nmol/L).

It also appears the average response time to a significant reduction in CH frequency and severity or going pain free is near the end of the second week with some going pain free in as little as two days after starting this regimen and others taking upwards of a month for a significant response.

Hope this helps.

Take care,

V/R, Batch


http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Am_J_Clin_Nutr-2003-Heaney-204-10.pdf (134 KB | 20 )

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Nov 27th, 2011 at 8:39am
Renee

What you tell about your CHs is terrible.  I really hope this regimen works for you!

I cannot explain all the interactions between vitamin d and magnesium, but I've understood they are many and significant.

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Nov 29th, 2011 at 2:19pm

Tate wrote on Nov 26th, 2011 at 5:11pm:
I have been slowly moving towards adopting the PH Balance diet...all about acid and alkaline....what we are talking about here with the supplements. Have any of you tried this diet or the machine that balances your drinking water?

Tate :)


Hi Tate,

I don't know about a machine that balances your drinking water. I add Liquid Chlorophyll to my water, usually about once a day, although my nutritionist says I should probably do it more often. I did a PH test a couple months ago and I scored pretty high on the acid side of things. A result probably of the high dose of Topiramate and poor diet I was on. Have switched (mostly) to a Blood Type diet, which has helped me a lot. The Liquid Chlorophyll is designed to balance the PH, and according to my nutritionist friend, cancer and other bad things can't live in a body that has a well balanced PH level.

Renée

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Nov 29th, 2011 at 2:27pm

Zeitgeist wrote on Nov 27th, 2011 at 8:39am:
Renee

What you tell about your CHs is terrible.  I really hope this regimen works for you!

I cannot explain all the interactions between vitamin d and magnesium, but I've understood they are many and significant.


Thanks zg. It is my last hope.

I'm single, and although I have many close friends, I rarely have anyone in my life around when I have clusters. And I'm really finding it to much to bear on my own. I give myself about another year if it keeps on like this and nothing changes in my circumstances.

So, not much pressure on Batch's formula or anything.

Renée

Title: Re: 123 Days PF And I Think I know Why
Post by Tate on Nov 29th, 2011 at 2:50pm
Renee,

Writing to you from the waiting room of a new dr! I too just started the oxygen chlorophyll drops in my water. The green drops, right? We shall see what all of this does. I have completely changed my diet, as I said... Don't know know if that will have any effect. Trying to stay away from any foods on the acid side of things...

I hear your frustration and feel your pain. Please know that many are looking out for you. :)

Let me know how things are going!

Do you have the strips to check your ph levels??

Tate! :) :)

Title: Re: 123 Days PF And I Think I know Why
Post by ReneeM on Nov 29th, 2011 at 3:02pm

Tate wrote on Nov 29th, 2011 at 2:50pm:
Renee,

Writing to you from the waiting room of a new dr! I too just started the oxygen chlorophyll drops in my water. The green drops, right? We shall see what all of this does. I have completely changed my diet, as I said... Don't know know if that will have any effect. Trying to stay away from any foods on the acid side of things...

I hear your frustration and feel your pain. Please know that many are looking out for you. :)

Let me know how things are going!

Do you have the strips to check your ph levels??

Tate! :) :)


Thanks, and I hope the new doc works out. Always worth taking the time to find the perfect doctor.

My LC is black actually, or a very, very dark blue maybe. Has a peppermint taste. I don't have the strips, but my nutritionist is an acquaintance, and I'm ghost writing his autobiography. So getting my PH checked from time to time isn't a problem. 

xx Renée

Title: Re: 123 Days PF And I Think I know Why
Post by SD1 on Nov 29th, 2011 at 3:19pm
Hello to all.  just a quick update.  im still taking the regime of 10k d3, 3600 omega 3 and calcium citrate/mag/d3 daily along with a tall glass of lemonade.  still getting slammed since 10/28. getting hit daily with the last few being kip 9/10's!!!  i started taking verap 400 daily about 2 weeks ago and it dosent seem to help at all. oxygen at flow rate of 25 has not been working even using the hyperventalating method.  my only savior has been imitrex injections which have worked every time.  somthing is really different about this season vs my previous.  like mentioned before, the beast has been hitting me on the right side vs the left side which has only happened one other time in my 12 years of clusters.

batch, what are your thoughts on me stoping the regime for about a week and starting it again to kind of reset things?

Title: Re: 123 Days PF And I Think I know Why
Post by Tate on Nov 29th, 2011 at 5:33pm
Renee,

Your drops sound WAAAY better than mine. :) Mine are tasteless for the most part, but ya kind of have to knock it back.

So, you are a writer? Cool!

The doctor was amazing. I really liked him. I am going to post about it as soon as I can figure out the appropriate spot.

Hope you are feeling better.

Tate :) :)

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 2nd, 2011 at 3:45am
SD1,

Sorry for the delay in responding...  We were on travel for Thanksgiving and didn't get home until late Tuesday evening/early Wednesday a.m.  Have been trying to catch up ever since...

Hang in there on the anti-inflammatory regimen... I've sent you a PM.  You may need to titrate up on the vitamin D3 dose...  Discuss it with your PCP/neurologist and/or shoot me a reply if you have questions. 

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 7th, 2011 at 2:47am
Day 1 of Batch's Batch of vitamins. 8-)
I had a hard time finding the "right" ones to buy. The Walmart "Pharmacist" wasn't that helpful unfortunately. He told me that Calcium-Citrate and Calcium-Carbonate are essentially the same thing, and that the Citrates are 'Salts', but even sounded doubtful of that.

I'd like to do my part and list actual products available at most North American pharmacies. So that if someone with little to no knowledge of Vitamins, like myself, wants to give this a shot, they wont have to educate themselves as much, or to begin with.

I got all these at Walmart for $45.

I learned that its not so much the 1,000 mg of fish oil that is pertinent, but rather the EPA and DHA Acids. For example my bottle lists 500 mg of Omega 3 Fatty acids. Providing 300 mg of EPA and 200 of DHA. (Derived from 1,000 mg of fish oil.
Jamieson Omega Omega-3 Select 1, 000 mg 150 capsules
$19

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I got these Calcium Citrate for $13.67
Calcium Citrate 300 mg/200 IU   High Absorption  180 Tablets
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I also got some
One A Day Men Iron Free with More Selenium Advanced Multi Vitamin 90 Tablets
Cause I seen on this thread that someones Dr recommended Selenium in addition.

$11
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I had several options, but I just got what Batch listed. For example theres Calcium from multiple sources, like Citrate, carbonate and a couple others. Also others that don't list "Vitamin D3" just Vitamin D.
Calcium Carbonate with Vitamin D, 500 mg/200 IU
or
Calcium Vitamin D3, Easy Absorption, Krebs Cycle
or see all the Calcium vitamins I had to chose from here
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Even the Omega 3's were tough to chose from. Regular stregth, extra, Super, yet the mg's seem to be misleading.

I guess I'll have to get educated, and perhaps someone can help me out. Although I'll give Google a work out, and read till my eyes bleed and I get so well-read that I end up more confused then I am now. lol

Citrate, Carbonate, ferate, Omega 3, Omega 3 with fish oil, Fish oil only, 300mg/200 IU, 500 mg/200 IU, mcg, ect, ect.  :o

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Fingers Crossed, and Thanks for all your work Batch.

Title: Re: 123 Days PF And I Think I know Why
Post by Barry_T_Coles on Dec 7th, 2011 at 7:02pm

Batch wrote on Nov 26th, 2011 at 8:22pm:
  His study basically shows that 25(OH)D levels reach an equilibrium and plateau by the end of the 5th to 6th month.

Take care,

V/R, Batch


Interesting; I started my regime of Mag/Calc/D3 on Friday 14,April 2006 but continued to get hit off & on until Monday, 2 October 2006 (Six months to the day almost).
I then had a 297 day break before I hit a high cycle again.

Hmm coincidental, I think not maybe.

Cheers
Barry

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 7th, 2011 at 8:36pm
Hey PlayDoh,

Glad you're giving the anti-inflammatory regimen a try.  By tomorrow you may be doing even better.  Response times for the anti-inflammatory regimen range from two days to three weeks with a few trickling in after four weeks.  The majority go pain free by the end of the second week.

For reference, calcium citrate is the preferred salt of calcium.  It's easier on the gut than calcium carbonate which needs to be taken with food.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 8th, 2011 at 2:13pm
So I've been getting hit 4 -5 times during the night like Kip 7-9 the past 2 weeks, and the odd one during the day. I started the regiem at dinner time on the 6th. That night I got 2 kip 1-2's and 1 kip 3-4.

Tonight I got 0!
PF and I feel great. Although I have a pretty painful ear infection at the moment, but Advil does the job for that.

I swear if you were next to me Batch, I'd kiss you.  :-* lol

I was thinking that if you told me 5 - 10 years ago that Oxygen and Vitamins would be great treatments for these "headaches" I would have laughed in your face. Yet I'm SO thankful. I have a heart condition and I can't handle the heavy drugs like Imatrex.

I'll keep everyone up to speed, and I'll be spreading the word.

For what its worth, I had success with Mushrooms the past year, but after taking some 3 weeks ago, my nightly kip 3's instantly jacked up to kip 9's. I even tried them again a week later and it didn't do anything.

Even for one day PF, Thank you Thank you Thank you Batch.

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Dec 9th, 2011 at 2:53pm
Hi all!
I've had a look at my  blood values again.  Vitamin D (25-OH) is now at 271 nmol/L (). That's slightly down from 295 two months ago. But not as much as I'd believed as I reduced the intake to 7500 IU from Oct 1st.

Anyway, after having been extremely loyal to this regimen for 160 days, it seems "to much vitamin D." is among the least of my worries. In the last 50-60 days I have had no new instances of nocturnal CHs, only some lighter "reminders".

Above all I hope this regimen prove helpful for the lot of you.  It really troubles me that it obviously isn't for some +- 25%. We really do lack the scientific insights to explain this. Some day I guess we'll hear a horse coming in the distance.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 9th, 2011 at 2:53pm
Hey Playdoh,

Wonderful news!  We're all very happy for you.  The way I see it after 14 months on this regimen...  you've got two choices...  Come off the anti-inflammatory regimen when you think your cycle is over and take your chances...  or... play the odds and stay on this regimen for the rest of your life like me...  If you do this, the odds are 70% in your favor that the next cycle will never happen and you'll be PF for life...  not to mention in a lot better health. 

Check with your cardiologist for a round of tests including the lab test for 25(OH)D, the serum level metabolite of vitamin D3, after you've been on this regimen for at least a month... 

By then you'll notice you have a lot more energy and will feel the urge to be more active...  See your cardiologist before you follow that urge...  and when you've done that and start to be more active, you might experience another pleasant surprise like I did and start shedding pounds and inches from the waist line.

Take care my friend.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Eric Hanson on Dec 9th, 2011 at 9:31pm
Batch,

I read a post on CB's web site with a listing of the ingredients for anti inflamatory regimine.

Here is the link:
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Unfortunatly I started the D3 and Fish Oil along with a 120 MG Pred Taper, 10 MG of melatonin, and lithium.  Irregardless of what is to blame for the immediate seccation of my headaches as I was beginning week 3 of the worst bout I have ever had.  3 to 4 kip 8-9s per day. 

I have been pain free for 5 days now and if continued this will be the shortest CH bout I have ever had.  The last one going strong for nearly 4 months.

This is what the list indicates I should take:  Please correct me if I am wrong. 

10000 I/U per day of D3
2500 - 3000 MG/Day Fish Oil
400 MG/Day Magnesium
Calcium Citrate 500 MG/Day
Zinc in the Calcium 10 MG/Day

The recipe also calls for Vitamin K @ 120 mcg/day.  That is the one that I am unable to find at my local pharmacy. 

Is the Vitamin K a critical piece of the puzzle and what is the best place to purchase it?  The local Wallgreens does not carry any form of vitamin K. 

Please let me know what you think.  And thanks for all you do on this board and beyond.

Eric

Title: Re: 123 Days PF And I Think I know Why
Post by Callico on Dec 10th, 2011 at 11:16am
Eric,

Try swansonvitamins.com  I started with them several years ago when I was using Kudzu.  They give awesome service and will price match anything on the web.  I found their prices to normally be below anything I could find at WalMart.

Jerry

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 10th, 2011 at 12:54pm
Hey Eric,

Thank you for passing your results after taking the anti-inflammatory regimen.  Given the typical response times and efficacy for this regimen compared to that of prednisone, I'd say the odds are 70:50 the anti-inflammatory regimen is responsible for the cessation of your CH.

I hope you find as my wife and I do...  that this is a daily regimen for life...  Lots of good health benefits and you'll feel a lot better too with more energy each day.  You'll also find you sleep a lot better too.

Regarding the more succinct list of supplements posted on ClusterBusters for the anti-inflammatory regimen, I've been remiss...  I sent them the updated list and dosing schedules but have yet to post it here at CH.com.

I've been working on an update to this regimen complete with an overall treatment protocol for CH and dosing strategies...  Unfortunately this takes time as I'm vetting the final version through several experts in vitamin D3 therapy and among neurologists who specialize in treating CH'ers.

What I can say at this point is the supplements and daily doses in your post are correct if you add Boron.  Vitamin K (actually vitamin K2) is one of the cofactors required in vitamin D3 therapy along with magnesium, zinc and boron.

If you use the Kirkland brand of calcium citrate from Costco, you get all of the macrominerals and micro minerals you need with the exception of enough magnesium.  Two of the Kirkland brand calcium citrate tablets contain the following assay:

500 mg.  Calcium
800 I.U.  Vitamin D3
  60 mg.  Magnesium
  10 mg.  Zinc
    1 mg.  Copper
    1 mg.  Manganese
    1 mg.  Boron

The Vitamin D Council suggests 500 mg. magnesium/day so if you use the Kirkland brand of calcium citrate, pick up a bottle of magnesium citrate or magnesium gluconate and take 400 mg/day.

That brings the total list of supplements and doses used in this regimen up to the following:

Anti-Inflammatory Regimen Basic Dosing Guide:

Disclaimer:  The following Anti-Inflammatory Regimen, treatment protocol and dosing guide to prevent cluster headaches are provided for information purposes only.  Discuss them with your primary care physician (PCP) or neurologist whoever is most aware of your overall medical health and other prescribed medications before starting this regimen.

If possible, have your PCP or neurologist schedule a lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D before starting this regimen.  This is the serum level metabolite of vitamin D3.  The normal reference range for 25(OH)D in the US is 30-100 ng/mL, (50-200 nmol/L in the EU, UK and elsewhere.  However, CH'ers presenting with active CH have had test results for 25(OH)D come back as high as 43 ng/mL, (107 nmol/L).

Based on reports from CH'ers who have had a favorable response to this regimen, the optimum therapeutic target range for 25(OH)D for CH'ers to remain pain free appears to be 60 to 90 ng/mL, (150 to 225 nmol/L).  It can also take as long as three months to elevate 25(OH)D levels from 20 ng/mL to 60 ng/mL (50 to 150 nmol/L) at a daily dose of 10,000 I.U. vitamin D3.  Some CH'ers may need a higher daily dose of vitamin D3

Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360 mg/day, DHA 240 mg/day)
Vitamin D3 *      - 10,000 IU/day
Calcium **         - 500 mg/day (calcium citrate preferred)
Magnesium         - 400 mg/day (magnesium citrate or magnesium gluconate)
Vitamin K ***     - 120 mcg/day
zinc                    -   10 mg/day
Boron                 -     1 mg/day   

This regimen can be taken any time of the day, but it's best taken in the morning with an 8-oz glass of lemonade, limeade, or any fruit juice high in citric acid sweetened with with a little honey.  Honey is a natural source of Boron, which is listed as one of the "cofactors" along with magnesium, vitamin K and zinc. 

If you miss a dose, take it asap.  It's important to keep building 25(OH)D levels and to keep them in the therapeutic range.

The list of micronutrients, macrominerals and micro minerals in this regimen are all important and each plays a role in making this CH preventative as effective as it is.

For example, the 500 mg. calcium in this regimen is essential as vitamin D3 pulls calcium from the gut and puts it into solution in the blood.  If you supplement with vitamin D3 and the total intake of calcium from all sources is not sufficient, the vitamin D3 will start leeching calcium from the bones...  Hmmm...  that's not good...

With the exception of vitamin D3 and Omega 3 Fish Oil, nearly all of the
remaining supplements are readily available in sufficient quantity in a good healthy well balanced diet of meat, fish, poltry, green veggies, cheese, oysters and honey.

For example, you can get your daily vitamin K requirements from green veggies or a slice of good Swiss cheese.   You'll get all the boron you need from a teaspoon of honey and a half dozen oysters, preferably raw on the half-shell with a dash of hot sauce... will give you a week's supply of zinc.

The Vitamin D Council indicates these cofactors help in metabolizing vitamin D3 into 25(OH)D and the calcium supplements aid in maintaining calcium homeostasis.  The calcium citrate and citric acid in the lemon juice or lime juice also combine to form a buffer in the stomach that can help elevate arterial pH which aids in stimulating vasoconstriction in and around the trigeminal nerves.  See the following link at the Vitamin D Council for an explanation of the vitamin D cofactors and their natural sources:

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Notes:
(1)  Medication Interactions and Contraindications:
     * Reactions to vitamin D3 are very rare as skin exposed to the UVB in direct sunlight produces vitamin D3 naturally.  However, if you are allergic to sunlight, do not start this regimen without contacting your PCP or neurologist first.  If you experience a reaction to this regimen including and not limited to, an upset stomach for more than a day, swelling in and around the mouth or face, or an obvious allergic reaction, discontinue the entire regimen and contact your family physician.

  **  If you are presently taking verapamil as a cluster headache preventative or for a heart condition, studies have shown that after repetitive dosing with verapamil, the serum half-life can be in a range from 4.5 to 12 hours.  Other studies indicated calcium supplements interfere with calcium channel blockers like verapamil.  Calcium gluconate is also used to treat reactions to oral verapamil.  Accordingly, in order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 hours.  Again, discus this regimen with your PCP, neurologist, or cardiologist to work out an optimum dosing schedule.

   *** If you are presently using blood-thinning drugs such as Warfarin or Coumadin for cluster headache or for a heart condition, vitamin K is generally contraindicated.  However, studies have found vitamin K2 to be an effective stabilizer in anticoagulant therapy, proving beneficial in situations of over-anticoagulation or when the response to therapy has been variable.  See your PCP, neurologist, and or cardiologist before starting this regimen if you are presently taking blood-thinning drugs.

(2)  Safety: This regimen is safe and well tolerated with many potential healthy benefits.  However, some physicians and CH'ers may be concerned about the apparent "high" dose of vitamin D3.  There are several studies that have clinically proven that the skin of a fair skinned adult clad in a bathing suit without sun block and exposed to the sun's UVB at midday, can generate 10,000 I.U. vitamin D3 (cholecalciferol) in as little as 15 minutes.  A recent study based on data from the GrassRootsHealth project of 3667 people taking vitamin D3 at various doses concluded:  Universal intake of up to 40,000 IU vitamin D per day is unlikely to result in vitamin D toxicity.

The folks at GrassRootsHealth START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE recently published the results of their D*action Project where 3667 people have been taking vitamin D3 and having their 25(OH)D levels tested every 6 months since 2008.  Participants also fill out questionnaires with each lab test to capture the essential demographic and epidemiological information.  439 of these D*action project participants reported taking vitamin D3 at doses up to and including 10,000 IU/day.  43 participants have had two or more consecutive tests for 25(OH)D while dosing on vitamin D3 at 10,000 IU/day.

As you can see in the graph illustrated on the GrassrootsHealth home page shown below, none of the 3667 participants dosing at 10,000 IU/day or less had lab tests for 25(OH)D anywhere near the lower threshold for vitamin D3 intoxication at 200 ng/mL, (500 nmol/L).

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I've attached a study titled: Vitamin D Supplement Doses and Serum 25-Hydroxyvitamin D in the Range Associated with Cancer Prevention by Garland et. al, that's based on the GrassRootsHealth D*action Project data as further proof that long term use of vitamin D3 at doses as high as 10,000 IU/day are very safe.

(3) Efficacy and Response Time.  70 out of the 100 CH'ers (both episodic and chronic), who have tried this regimen over the last year have had a significant reduction in the frequency and severity of their CH and better than 90% of them have gone pain free.  Typical response times to this regimen range from two days to three full weeks with the majority occurring by the end of the second week.

As this regimen has many other health benefits beyond being 70% effective as a cluster headache preventative, it's best to stay on it as long as possible if not for life...  There have been a handful of CH'ers who took over a month to respond to this regimen and several clinical studies have shown it can take upwards of three months to elevate 25(OH)D levels from 20 ng/mL to 60 ng/mL, (50 to 150 nmol/L).  Moreover, chronic CH'ers who stop taking this regimen after an extended period of use greater than six months, may experience a relapse with a resumption of CH in as little as a week...

(4) Mechanism of Action.  The precise mechanism of action of the anti-inflammatory regimen in preventing cluster headache remains to be fully determined, but it includes the following two possible mechanisms:

Omega 3 Fish Oil and vitamin D3 (cholecalciferol) are well documented as having anti-inflammatory properties.  It is possible these properties counteract the neurogenic inflammation present in the cluster headache syndrome.

In addition, at least two studies have pointed to the capacity of vitamin D3 to suppress or down regulate calcitonin gene-related peptide (CGRP) and vasoactive intestinal polypeptide (VIP), both of which are elevated during a cluster headache.

(5) Comorbidities:  Some comorbid conditions may interfere with the capacity of the anti-inflammatory regimen to prevent CH.  Some of these medical conditions include but are not limited to: cardiac, thyroid, renal, hepatic, and pancreatic insufficiencies. Sub-clinical allergic reactions and sinusitis are also suspect.  If you presently suffer from one or more of  these medical conditions, work with your PCP to resolve them as this may increase the likelihood of favorable response to the anti-inflammatory regimen.

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=607_full.pdf (160 KB | 20 )

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 10th, 2011 at 5:18pm
I swear you deserve a Nobel prize for all of this work. I think you missed your calling as a Dr.
Thanks for all of the info, should take me a week to digest it all. 8-)

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Dec 10th, 2011 at 6:59pm
Hi

The calcium is not needed in the regimen if you are eating/drinking milk products. If your diet intake is below 500 mg it's essential to take some calcium supplement otherwise it's not. Most people (90%+) get enough.

The calcium lie:
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Title: Re: 123 Days PF And I Think I know Why
Post by 69Strat on Dec 10th, 2011 at 10:37pm
Two weeks in on Batch's formula. 1st week, not much. This week, distinct reduction in intensity. 8-9 down to 3-5ish. Also upped verap to 480mg and lithium to 900mg. Insurance company pays for shots, but no oxygen. They said clusters aren't a recognized condition. Why they cover shots is beyond me. I was going to argue the cost benefit of oxygen, but am afraid they'll pull the shots if they figure it out.

Chronic since 2004. I was high cycle since Oct. HA every 2-3 hours, 24/7. Worst ever. Even the daytime wasn't spared, which was unusual. Now I see some light at the end of the tunnel. Hope it's not a train.

I'm thinkin' the D3 regimen is the savior, but staying on other meds for now. If they go away completely I'll consider dropping the meds. They haven't done that in 7 years.

Thanks again Batch!  :D


Title: Re: 123 Days PF And I Think I know Why
Post by Eric Hanson on Dec 10th, 2011 at 10:43pm
Batch,

I first of all cant thank you enough for your help with this remedy. 

I do however still need some more clarification regarding the K2.  There are many varieties available from the Swanson Health products website that was recomended by another poster. 

Can you tell me exactly what brand of product you use?   I want to get the recipe exactly as you use right down to the brand of product.   I have every mineral covered except the K. 

Thanks again for your help and I hope you are having a nice weekend.

Eric

Title: Re: 123 Days PF And I Think I know Why
Post by Mike NZ on Dec 11th, 2011 at 12:46am

69Strat wrote on Dec 10th, 2011 at 10:37pm:
Insurance company pays for shots, but no oxygen. They said clusters aren't a recognized condition.


If it's not recognized then why are cluster headaches classified as a primary headache by the International Headache Society - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE ?

Similarly, why are there over 2500 hits for cluster headache on the US National Library of Medicine (PubMed) - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE - many of which are describing medical research refereed and published in medical journals?

Of course the insurance company knows better...



Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 11th, 2011 at 3:08am
69Strat,

Hang in there... and see my PM to you.  Regarding the oxygen...  It sounds like your medical insurance company is trying to bluff you...  If you have a valid Rx for oxygen therapy signed by your doctor and your insurance company is refusing to cover it, ask for the name and address of their physician in writing who decided to disregard your doctor's written orders...

While you're at it, you can send your insurance company the following link from the U.S. Department of Health & Human Services National Guideline Clearinghouse.  It's the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.   This standard of care guideline lists oxygen therapy at 15 liters/minute as the first abortive of choice for the acute treatment of cluster headache.

This guideline also contains the following chart showing the standard of care treatments for cluster headache:

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You can also play the code game with them... 

Diagnostic and Treatment Codes

  Diagnostic Codes

    ICD-9-CM Diagnosis Codes:
        Episodic Cluster Headaches – 339.01
        Chronic Cluster Headaches  – 339.02

   ICHD-II Codes:
       Episodic Cluster Headaches – 3.1.1
       Chronic Cluster Headaches  – 3.1.2

   ICD-10 NA Codes:
       Episodic Cluster Headaches – G44.01
       Chronic Cluster Headaches  – G44.02

The following codes for treatment and procedures are applicable to most private medical insurance guidelines are included below for informational purposes.  Inclusion or exclusion of a procedure, diagnosis or device code(s) does not constitute or imply member coverage or provider reimbursement policy.  Refer to your medical insurance contract benefits in effect at the time of service to determine coverage or non-coverage of these services as it applies to an individual member.

Playing Hard Ball When Calling Your Medical Insurance Company

The following is a modified version of an article from a 2007 OUCH Newsletter

1. Record your conversation with them about obtaining home oxygen therapy. Be upfront with them that they are being recorded. Be sure to have your policy in front of you, and know it. They may quote clauses in it that do not exist. If they quote from it let them know it is in front of you and ask exactly where in the policy they are quoting.

2. Ask for names when talking to representatives, both first and last. The insurance companies may make statements that turn out not to be true when they deny you your oxygen therapy. In my opinion this is their Achilles’ heel.  In my experience they do not want to give their full names out, if they don’t give you their name ask for their supervisor, or their supervisor’s supervisor.

3. One of the first statements that they may make is to site the fact that Medicare does not cover oxygen therapy for cluster headaches and that insurance companies are allowed to use this rule.  Unless you are on Medicare and have no secondary medical insurance, this rule may not apply to you.

4. They may also tell you that hyperbaric oxygen therapy is not covered.  While this is true, your doctor has prescribed normobaric oxygen therapy at one atmosphere barometric pressure and this method of oxygen therapy is covered.  If they quote from the FDA Legend they are making the implication that limiting oxygen therapy it is a federal regulation. This is not the case; this is where asking for the representative’s name is important. Would you want to be on the record quoting non-existing federal regulations to deny someone a lawfully prescribed medication?

5. Have your medical insurance policy/plan booklet in front of you when you call. If they tell you the limits are in your policy, tell them you have it in front of you, and ask them exactly where it is.

6. By changing or failing to honor your attending physician's orders as expressed in the prescription he/she wrote, they are practicing medicine without a license. When they tell you they have a review panel that includes a physician, the physician on their panel is committing malpractice since he's changing your attending physician's orders as expressed in the prescription when he's never examined you. Ask for that physicians name and credentials, and request to speak to him directly.

7. Another common mistake made by the insurance companies is that they are treating you as a COPD sufferer.  You may have to point out several times that you do not suffer from COPD and your blood oxygen levels are fine, but you do suffer from cluster headaches. Treating them as one and the same is a medical mistake.

9.  Remember that you are your own best advocate.  Be assertive yet polite. When given an untrue statement, tell them that it is untrue and ask from whom they are quoting and ask to speak to that person directly.  Ask them if they are sure they want to be on the record quoting that statement.  Remind them that the monthly cost of coverage for triptan injections runs from $680 to $2550 and that a month’s supply (4 M-size Oxygen cylinders) costs less than $160.  Also remind them of the cost of an ER visit, mention to them that you would have no choice but to go to the ER for the attacks. 

10. If you are still not getting any satisfaction, ask for the form and web link containing the procedures for challenge a coverage limitation.  They are required by law to provide you with this information.  Also ask for the phone number for the National Association of Insurance Commissioners covering your insurance company.  You can find this at the following link if they can’t come up with a number:

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    Healthcare Common Procedure Coding System (HCPCS) Codes

        Equipment:
           E0424-E0425 Stationary compressed gaseous oxygen system
           E0430-E0431 Portable gaseous oxygen system

       Contents:
          E0441 Oxygen contents, gaseous, 1 month’s supply = 1 unit

      Modifiers:
         QG - Prescribed amount of oxygen is greater than four liters per minute (LPM)


NHS,  You're correct about most folks getting enough calcium from milk and cheese...  It's the folks who don't that are cause for concern given the 10,000 IU/day vitamin D3.  As long as there's no reaction, the additional calcium won't hurt.

Eric, I don't take vitamin K/K2 as I chow down on lots of green veggies and we go through a lot of cheese around here... so I'm not much help on what brand of vitamin K2 to get... 

The role of this micronutrient is important, but it appears to be readily available at more than the dose required in veggies and Swiss cheese... 

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Vitamin K2 from any major name brand mfg. should work just fine.

Hope this helps,

Take care,

V/R, Batch


Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 11th, 2011 at 4:30am
So..... I guess I need to go Vitamin shopping perhaps. Aparently I've only been taking like a tenth of the D3 I should.
Heres what I've taken for 4 days

Omega 3 fish oil   4000  EPA 1200  DHA 800
Vitamin D3          1,200 IU / 30 mcg
Calcium              1,200 mg
Magnesium         100 mg
Vitamin K           0
zinc                  15 mg
Boron                0

I only have Calcium Citrate with Vitamin D3 and my "one-a-day" as a source of D3. The Calcium's have 200 UI each of D3 and I've taken 4 a day. And the one-a-day has 400 UI / 10 mcg. 30 mcg total.

I just seen Batch's picture of his Vitamins and he has a 5000 IU D3 bottle.
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I wonder if its odd I've had success? I do have a healthy diet, not awesome I guess, but mostly good home-cookin.
Back to the Vitamin Isle      :-?

Title: Re: 123 Days PF And I Think I know Why
Post by anthony g on Dec 11th, 2011 at 8:48am
I have been taking 10,000 iu vit d along with calcium/mag and fishoil. I was on verap of awhile and having contstant daily shadows. Something was telling me that the verapamil was doing more harm than good in reference to the constant shadows. I was talkin with my good friend batch and decided with my doc's approval to come off verap. Batch told me to up my d to 20,000 so i did. Guess what my constant shadows are MUCH better since. Coincidence? I dunno just yet but I believe it has an inpact for sure. I am also on 450mg lithium a day so I will keep u all posted!!
Anthony

Title: Re: 123 Days PF And I Think I know Why
Post by jon019 on Dec 11th, 2011 at 3:23pm
The above...WOW...just WOW...that there is a plan to go to battle with...textbook detail...concise and profound. Pete knows and provides....daily. Boy howdy...GOOD stuff!

Would add only a couple of other thoughts. In my own experience with the "evil empire"....at least 6 health insurance providers...only one covered O2 without question. All the others.... it was a fight.

1) They are gonna be thinking "migraine"..no matter what you say or what the diagnosis is. You must dissuade them of this fantasy....repeatedly...showing diagnosis...and...

2) With a Doc that's got your back. Took 20 yrs for me to find such...I'm a lucky man, but also a persistant, determined...and sometimes pissed off patient. If you don't advocate for yourself...aint no-one else gonna. When I showed some later denials (O2 and Zomig) to my treating neuro...she got as pissed as me and wrote a scathing letter indicating what treatment was needed, medically appropriate, and if they wished to dispute her...bring it on...you will lose! Better than any med...that letter...find yourself a headache specialist...with a head and a heart..it aint easy...neither is ch. BTW...they didn't lose...didn't want to fight anymore...they gave up... only a couple of days later...I have the E-tanks to prove it.

3) If you work for a company that provides health insurance...then it is likely to have been purchased through a "broker". Despite what seems logical...hey, I'm a customer of your insurance co...it AINT true. They really don't care a damn about you. The BROKER is their customer. Took me a while to realize that...and then I used that to my advantage. The broker wants to please their customer...YOUR company....and therefore YOU.  I hammered that broker, with the help of my HR dept, through resistance that was puzzling. Took a while and some angst...but I got what I needed..for ch...and later another condition.

Best,

Jon


Title: Re: 123 Days PF And I Think I know Why
Post by oxyrunner on Dec 12th, 2011 at 9:57am
Hi, I haven't posted on here for a long time, everything was going along quite nicely with Batch's regime. 11 months into cycle  :-[ (usually last 6 weeks) and always on the left side. This week the headache has shifted to the right side, the shadow, numb nose, the annoying occassional reminder behind my eye etc !! I have had more D3 bood tests and they have come back as 279 nmol/L. This is quite high I think and my Dr wants to see me to discus things. The only problem is - I am taking 14,000iu D3 daily split into 2 doses plus the omega oils, zinc magnesium and calcium and if I reduce it at all the CH rears its ugly head within 2 days  >:( . I'm concerned that I will have to stop taking the vitamins. I would not have been able to function at work this year without taking them as I was having 5 CH a day all lasting between 2 - 3 hours. Just wondered what the highest D3 results have been on here and whether anyone has stopped taking it?

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Dec 12th, 2011 at 10:52am
Hi oxyrunner

There is no reason to stop taking the vitamins, but you have to lower your vitamin-D3 intake to 5000 IU per day. It's enough to maintain a optimal vitamin-D level.  ;)


Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Dec 12th, 2011 at 11:19am
Hi Oxyrunner
After 3 months on the regimen, 10.000 IU + sun, as this was summer months, my D3-level was 295.  I reduced daily intake to 7.500 (10- and 5.000 every other day).  1.5 months later my D3 level is a 271 nmol/L
I plan to keep using 7.500 and reduce to 5.000 when the summer arrives in 2012.

Title: Re: 123 Days PF And I Think I know Why
Post by Eric Hanson on Dec 12th, 2011 at 4:00pm
Update;

I have been on a number of different treatments all at once so I know that determining which is working is all but impossible. 

But here is where I am at. 

I started the 123 method along with a 120 mg pred taper, lithium 900 mg p/d, 10 mg Melatonin at night, and two occipital nerve blocks, the latest on the 8th. (I am not sure what the two chemicals he injected were but I know that they were not lidocain or botox)  However my head was very anestetically numb on the entire back/upper right side.   

The lithium levels were tested and found to be well below theraputic ranges however my Neuro explains that the lithium is more to keep me from going insane on the pred than as a CH prevent.  He is right, I handeled the pred with not so much as a crazy thought.  It actaully has not been a bad experience so far. 

I had a total stoppage of all head aches about 3 or 4 days into the treatments.

I am down to 30 mg Pred per day doing a doctor prescribed "self taper" today being the second day, and I  have added in the swiss cheese for vitamin K2.  I also upped the D3 frm 10000 IU per day to 15000 IU per day this morning.  As I live in Minnesota and we are not getting alot of sun these days. 

After going nearly 6 days without a HA, I was then hit Saturday morning with a very strange KIP 7-8 that didnt respond to the o2 and was equally as stubborn to the 2-3 mg Imitrex self inject.  Taking about 30 minutes to completely clear up.  I was then hit again today Monday with a KIP 5-8 that also took about 20 minutes for the 4mg auto inject to clear things up.  The times for the Trex are about 10 to 15 minutes longer than usual.

I again am following the 123 regimin to a T using all of the required minerals and vitamins. 

Clearly I am not out of cycle or the woods yet.  But still not getting hit as hard as I was prior to trying anything. 

Please respond if anyone has some input, comments, or advice.   

Thanks,

E


Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 12th, 2011 at 4:24pm
Hey Oxyrunner,

Good question...  If I were you...  I'd stay the course...  The risk:reward ratio is working in your favor if you have a better quality of life since starting this regimen...  And if the QoL isn't high enough...  you may need a higher dose of vitamin D3...

My wife takes 15,000 IU/day vitamin D3 and has done so for over a year.  She feels great, looks great and has more energy than I've seen in her in many years.  She's also kicked the heck out of 75 and turns 76 next week.  Her doctor told her to "keep doing whatever you're doing...  your labs look like their coming from a much younger woman."  That made my wife real happy...

When you see your doctor tell him you want to remain at the lowest dose of vitamin D3 that provides a therapeutic response to your CH (like mostly pain free) as long as your 25(OH)D level remains below the lower threshold for vitamin D3 intoxication at 500 nmol/L, (200 ng/mL).  If that dose is 14,000 IU/day...  Then that's the dose I'd take.

If your doctor is still having angst after hearing this...  Tell him you'll be happy to come in for another 25(OH)D lab in six months or if you appear to be having a reaction...

If you don't want to play Stump the Dummy with your doctor, go to the following link at the Vitamin D Council and get smart:

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I love their opening statement... and another further down the above page: "Can too much vitamin D be harmful? Yes, it certainly can - though anything can be toxic in excess, even water. As one of the safest substances known to man, vitamin D toxicity is very rare. In fact, people are at far greater risk of vitamin D deficiency than they are of vitamin D toxicity."

"Toxic doses

What exactly constitutes a toxic dose of vitamin D has yet to be determined, though it is possible this amount may vary with the individual.

Published cases of toxicity, for which serum levels and dose are known, all involve intake of ≥ 40000 IU (1000 mcg) per day.   Two different cases involved intake of over 2,000,000 IU per day - both men survived."

The whole issue over how much vitamin D3 to take and how high we should let our 25(OH)D go has unfortunately fallen into the hands of four big government, nanny-state bureaucrats on the Food and Nutrition Board at the Institute of Medicine and not in the hands of the thousands of physicians who treat patients with vitamin D3 deficiency on a daily basis over several years...

If you want to put this in perspective...  and there are several sides to this perspective depending on who/what you are...  i.e. CH'er, Big Government Bureaucrat, Physician, or Big Pharma...  let's take the use of verapamil as a CH preventative...

Until a couple years ago, neurologists just kept prescribing verapamil in higher doses... until we said "Ah", "Ugh" or fell on the floor clutching our chest...

Then in 2007, Goadsby et al. published a study on CH'ers taking verapamil as a preventative that found the following:


Results: Of three hundred sixty-nine patients with cluster headache, 217 outpatients (175 men) received verapamil, starting at 240 mg daily and increasing by 80 mg every 2 weeks with a check electrocardiogram (EKG), until the CH was suppressed, side effects intervened, or to a maximum daily dose of 960 mg. One patient had 1,200 mg/day. Eighty-nine patients (41%) had no EKGs. One hundred eight had EKGs in the hospital notes, and a further 20 had EKGs done elsewhere. Twenty-one of 108 patients (19%) had arrhythmias. Thirteen (12%) had first-degree heart block (PR > 0.2 s), at 240 to 960 mg/day, with one requiring a permanent pacemaker. Four patients had junctional rhythm, and one had second-degree heart block. Four patients had right bundle branch block. There was bradycardia (HR < 60 bpm) in 39 patients (36%), but verapamil was stopped in only 4 patients. In eight patients the PR interval was lengthened, but not to >0.2 s. The incidence of arrhythmias on verapamil in this patient group is 19%, and bradycardia 36%. Conclusion: We therefore strongly recommend EKG monitoring in all patients with cluster headache on verapamil, to observe for the potential development of atrioventricular block and symptomatic bradycardia.

Now...  How many of us received a prescription for verapamil prior to 2007 and were told to have an EKG to establish a baseline and to have a second EKG after reaching a therapeutic dose?   

My guess is the answer was zero... unless your cardiologist was treating your CH...

Let's try another analogy...  Which is bigger... a bread box or a house?

A house of course...  All Y'all got that right.

Now... which of the following two things we can take to prevent our CH has a bigger risk of death, Vitamin D3 or Verapamil?

If you said verapamil...  Good on you...  Now for the bonus question...

How much bigger?

You'll see what I mean if you take a look at the following link that provides statistics on adverse reactions and side effects attributed to verapamil as reported to the FDA.

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The links relating to death and verapamil are sobering:

Index of reports > Cases resulting in death (133)
         Completed Suicide (104),  Cardiac Arrest (12),  Drug Toxicity (10),  Poisoning (10),  Cardio-Respiratory Arrest (6),  Intentional Drug Misuse (5),  Poisoning Deliberate (5),  Medication Error (5),  Respiratory Arrest (5),  Intentional Overdose (4)

Kind of blows your mind a bit... doesn't it?  Now I'm not a doctor and you'll notice I didn't say "Don't take verapamil..."  It's a valuable medication when prescribed properly.  But when you compare the risk:reward ratios between verapamil and vitamin D3...  there's two reasonable options but really one good option...

Soooo...  in my book...  It all comes down to quality of life and the risk of keeping it high or at least acceptable so we can function like normal folks do...  If the risk is low in maintaining this level of QoL when preventing your CH...  it's a no brainer...  You decide then talk with your doctor...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 13th, 2011 at 9:46pm
Yikes. I now better understand why my Dr and Cardiologist fanatically said NO WAY to verapamil. I have a stubborn case of recurrent SVT, (Super ventricular tachycardia), which means Atria tachycardia (upper heart) and its the 'nuisance' form. Ventricular tachycardia is the one that kills. bradycardia is very scary (too slow HR), I've been boarder-line once, during surgery. Not a good feeling, even while sedated.

Great info, and its amazing EKG's are not done for 100% of patients. It takes 10 seconds, and a sheet of paper. I could give myself one if you left me alone with the machine for 10 mins. Its harder to hook-up a printer then an EKG. lol

Just on the basis of risk, vs cost of doing an EKG.

Title: Re: 123 Days PF And I Think I know Why
Post by oxyrunner on Dec 15th, 2011 at 3:54am
Thanks for the info Batch - I love you your updates, the're like a mini encyplopedia.  ;)

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 15th, 2011 at 1:10pm

oxyrunner wrote on Dec 15th, 2011 at 3:54am:
Thanks for the info Batch - I love you your updates, the're like a mini encyplopedia.  ;)


lol. Great analogy. I agree.

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Dec 15th, 2011 at 5:08pm

oxyrunner wrote on Dec 15th, 2011 at 3:54am:
Thanks for the info Batch - I love you your updates, the're like a mini encyplopedia.  ;)



I always warn people...Batch's posts are long, technical, wordy....read them anyways, they're worth it! ;D

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Dec 16th, 2011 at 1:48pm
Survey completed.

My experience is...3 months at Vitamin D 15,000 IU daily = no improvement.

increased Vitamin D to 25,000 IU for past 2 weeks = no improvement.

going to quit regimen as it is ineffective for me. Undecided

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 16th, 2011 at 3:15pm
LasVegas
None of my business I suppose, but did you try the whole regime or just D3?
I ask because I'm not sure what ingredient is doing me more good then the other, since I was only taking 1200 IU of D3 with
Calcium Citrate w/D3 (1200 mg Calcium, 5 mcg of D3)
Omega 3 (2000 mg derived from 4000 mg of fish oil) 1200 EPA + 800 mg DHA, but I cut back one pill (1/4 total amount)
Multivitamin with extra Selenium (Men's One-a-day)
Ingredients
Vitamins:
    Vitamin A (as acetate).........4000 IU
    Beta-Carotene .....................1000 IU
    Thiamine ).............................2.25 mg
    Riboflavin .............................2.55 mg
    Vitamin B6 .................................3 mg
    Vitamin B12..............................9 mcg
    Vitamin C..................................90 mg
     Vitamin D.................................400 IU
    Vitamin E.....................................45 IU
    Folate........................................0.4 mg
    Niacinamide.............................20 mg
    Panthothenic Acid...................10 mg
    Minerals:
    Chlorine.....................................34 mg
    Chromium............................150 mcg
    Copper........................................2 mg
    Iodine.....................................0.15 mg
    Magnesium............................100 mg
    Manganese.............................3.5 mg
    Molybdenum...........................42 mcg
    Potassium...........................37.5 mcg
    Selenium.............................87.5 mcg
    Zinc.......................................15 mg

I got immediate CH relief and I was in the middle of a bad bout. I had taken psilocybin since it busted my clusters the past 2 times, yet the last time it made my CH's much worse. Perhaps the combo of psilocybin and the Vitamin regime helped me, yet I feel the regime deserves all the credit.

I'm not suggesting what I take(n) would be any better then what you've tried, yet from your Dopamine post I'd suggest trying more Magnesium, perhaps.

I know I'm going to look in to whether I can/could/should increase the amount of Magnesium.

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Dec 16th, 2011 at 3:39pm
D3 without magnesium may prove not to have the desired effect.  Magnesium is the singlemost important D3 co-factor. Unless your food is very rich on magnesium, do not skip it in this regimen. And if you do, make sure you say it out load. No point blaming the gaz for not working on your car if you're out of oil.

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Dec 16th, 2011 at 4:27pm
PlayDoh,
Yes, i've done the entire regimen and have had numerous phone conversations as well as in-person discussions with Batch.  I've done everything correctly, yet no relief. 

This regimen has provided excellent results for many, however is not 100% effective for everybody; just like Verapamil/o2/etc is not 100% effective for everybody.

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Dec 17th, 2011 at 10:05am
Sucks vegas, but yeah, the nature of the beast. We still haven't found that magic 100% silver bullet. :'(

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Dec 17th, 2011 at 10:16am

Guiseppi wrote on Dec 17th, 2011 at 10:05am:
Sucks vegas, but yeah, the nature of the beast. We still haven't found that magic 100% silver bullet. :'(

Joe


and we probably never will Joe because there is a lack of awareness, $, neurological education and research/development

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 17th, 2011 at 2:33pm

LasVegas wrote on Dec 16th, 2011 at 4:27pm:
PlayDoh,
Yes, i've done the entire regimen and have had numerous phone conversations as well as in-person discussions with Batch.  I've done everything correctly, yet no relief. 

This regimen has provided excellent results for many, however is not 100% effective for everybody; just like Verapamil/o2/etc is not 100% effective for everybody.


Damn, I'm truly sorry to hear that. I think that's one of the most puzzling aspects of CH, is the disparity in treatments efficacy.

I wonder how it ranks among ailments in that aspect?

Kudos for giving it a try and helping out with feedback.

Title: Re: 123 Days PF And I Think I know Why
Post by Chad on Dec 20th, 2011 at 6:19am
Batch,  first off, thanks for your info on this.  I'm starting a cycle now and would like to try this along with my rc seeds that I use regularly as maintenance.  The seeds seem to help with the cycles as they have been easier to manage the past couple of years.  My question and maybe somebody already asked, but what about plain vitamin D or is D and D3 the same?  I'm a dummy when it comes to vitamins.  I already take 2000 mg fish oil/day and 2400mg of red yeast rice/day to manage my cholesterol along with with jogging a couple times of the week.  I wonder if my change of lifestyle has helped my CH.  My remission has been 1.5 years compared to the usual 6 months.  I do want to try this immediately because my goal like every bodies is to control this beast as fast as possible w/o using pharma drugs.  Thank God for my O2.  It never lets me down.

Title: Re: 123 Days PF And I Think I know Why
Post by Eroc on Dec 20th, 2011 at 7:26am

Batch wrote on Dec 10th, 2011 at 12:54pm:
.

For example, the 500 mg. calcium in this regimen is essential as vitamin D3 pulls calcium from the gut and puts it into solution in the blood.  If you supplement with vitamin D3 and the total intake of calcium from all sources is not sufficient, the vitamin D3 will start leeching calcium from the bones...  Hmmm...  that's not good...



I am not a doctor but engaged in a conversation with my father in law who was almost admitted to the hospital for too much calcium.  He is being treated for a slow growing cancer of some sort that he has had for more than ten years. 

I found this information at the following link:
Vitamin D promotes calcium absorption in the gut and maintains adequate serum calcium and phosphate concentrations to enable normal mineralization of bone and to prevent hypocalcemic tetany. It is also needed for bone growth and bone remodeling by osteoblasts and osteoclasts [1,2]. Without sufficient vitamin D, bones can become thin, brittle, or misshapen. Vitamin D sufficiency prevents rickets in children and osteomalacia in adults [1]. Together with calcium, vitamin D also helps protect older adults from osteoporosis.

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The two pieces of information appear to contradict each other. 

Batch could you help clear this up as I am sure you have seen this before?

Thanks

7 Days PF

Eric

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Dec 20th, 2011 at 8:14am
Hi Eric,
I've mentioned it several times, that most people get enough calcium in their diet. We have discussed the issue at VitaminDcouncil a couple of years back, and the conclusion was that most people taking vitamin-D, DON'T need extra calcium.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 20th, 2011 at 4:54pm
Most folks who eat a healthy, well-balanced diet get sufficient calcium.  However as we get older, we need additional calcium to help prevent osteoporosis.  Most calcium supplements also contain 600 to 800 I.U. vitamin D3 to help push the calcium supplements into the blood stream.

The Food and Nutrition Board at the Institute of Medicine set the Dietary Reference Intakes (DRIs) for vitamin D3 and calcium in 2010.  Understand that the four members of the FNB who set these DRIs are recognized experts in nutrition and biochemistry.  Three of them come from tenured professorial positions academia and one from big government (FDA and NIH-DHHS).  In short, they're not medical doctors nor do they test and treat patients for vitamin D3 deficiencies on a routine basis...  but they want to control what you take when it comes to USP vitamins and minerals.

You'll find the DRIs for calcium and vitamin D3 at the following link:

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It's interesting to note that the DRIs call for ~ 1000 mg/day calcium and a staggering 600 IU/day vitamin D3.  Moreover these experts also decided that the safe tolerable upper limit (UL) daily intake for these two supplements are 2000 mg/day calcium and 4,000 IU/day vitamin D3.

You're probably wondering why the political circumlocution and why doesn't he answer the question...

Here it is...  The experts in vitamin D3 therapy talk about a 95% dose...  In other words, in order to ensure that adequate calcium levels are met for 95% of the population and the average requirement for calcium is 800 mg/day, then we need a total of 1000 mg/day calcium from all sources, i.e. dairy products and supplements to ensure 95% of the population has enough calcium. 

However, when you consider that 10,000 IU/day vitamin D3 will drive more calcium from the gut into solution than normal, you're faced with two choices and their consequences... 

Take more calcium... when it may not be needed...  or take too little calcium and run the risk of vitamin D3 leaching calcium from bones when too little calcium is available in the gut...

The anti-inflammatory regimen calls for 500 mg/day of calcium citrate...  Sounds reasonable to me...  you decide.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Dec 21st, 2011 at 7:06am

Quote:
Take more calcium... when it may not be needed...  or take too little calcium and run the risk of vitamin D3 leaching calcium from bones when too little calcium is available in the gut...


If your not getting enough calcium from your diet, it's very important to get a calcium supplement. But with 10.000 IU of vitamin-D3 and a normal diet most people get all the calcium needed, and nothing are lost from the bones but calcium are added. Most people don't get enough magnesium, so the 500 mg extra calcium you recommend will offset most of the extra magnesium supplement, and the cal/mag imbalance is still present. So the extra calcium makes no sense.

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Dec 21st, 2011 at 9:12am

nhs wrote on Dec 21st, 2011 at 7:06am:
Most people don't get enough magnesium, so the 500 mg extra calcium you recommend will offset most of the extra magnesium supplement, and the cal/mag imbalance is still present. So the extra calcium makes no sense.


Hi nhs.  I know D3 will heighten the uptake of Ca. But what is the role of Mg here?  Why imbalance, and what is the effect?

Thanks!

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Dec 21st, 2011 at 2:36pm
Regarding D3 dosing:  Dr. John Cannell at the Vitamin D Council states the general rule:

... proper maintenance dosage(25mcg (1,000 IU/10 kg per day)

From this recent article:
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Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Dec 21st, 2011 at 3:37pm

Quote:
Hi nhs.  I know D3 will heighten the uptake of Ca. But what is the role of Mg here?  Why imbalance, and what is the effect?


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Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 21st, 2011 at 11:21pm

nhs wrote on Dec 21st, 2011 at 7:06am:
But with 10.000 IU of vitamin-D3 and a normal diet most people get all the calcium needed

Define "Normal Diet". I would assume, from the people I know, that "Most" people don't even drink milk anymore.

I don't think its wise to Generalize "Most People", and I don't see the point in arguing that a Calcium supplement is unnecessary. If you feel its unnecessary, don't take it, simple as that.
1000 mg/day calcium is quite a bit, and considering vitamin D3 will drive more calcium from the gut into solution than normal its seems logical that a Calcium supplement IS necessary in most circumstances.

Even if its not necessary, its understandable that its recommended. All supplements are "Unnecessary" if your diet is sufficient, its up to you to determine if you should take one or not.

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Dec 22nd, 2011 at 7:43am
If you are low in vitamin-D, only 20-30% of the diet calcium is absorbed from the gut, so when the vitamin-D level increases, the calcium absorption will increase the absorption from the remaining 70-80% calcium from your diet. Vitamin-D sufficiency may be more important than high calcium intake in maintaining desired values of serum PTH. Vitamin-D have a calcium sparing effect and as long as vitamin D status is ensured, calcium intake levels of more than 800 mg/d may be unnecessary for maintaining calcium metabolism. So taking vitamin-D, don't need extra calcium from supplement, if your diet contains 800 mg of calcium.

Title: Re: 123 Days PF And I Think I know Why
Post by bsic on Dec 22nd, 2011 at 10:39am
Im heading to the doc tomm to get routing bloodwork done for high cholesterol.

I can use this opportunity to get other things measured which you are interested in.

I just started this regimen three days ago.  What specific things would you guys be interested in seeing as far as bloodwork goes?

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 22nd, 2011 at 1:39pm

bsic wrote on Dec 22nd, 2011 at 10:39am:
What specific things would you guys be interested in seeing as far as bloodwork goes?

25(OH)D serum levels


25-hydroxy vitamin D test

The 25-hydroxy vitamin D test is the most accurate way to measure how much vitamin D is in your body.

In the kidney, 25-hydroxy vitamin D changes into an active form of the vitamin. The active form of vitamin D helps control calcium and phosphate levels in the body.

This article discusses the blood test used to measure the amount of 25-hydroxy vitamin D.
How the Test is Performed

Blood is typically drawn from a vein, usually from the inside of the elbow or the back of the hand. The site is cleaned with germ-killing medicine. The health care provider wraps an elastic band around the upper arm to apply pressure to the area and make the vein swell with blood.

Next, the health care provider gently inserts a needle into the vein. The blood collects into an airtight vial or tube attached to the needle. The elastic band is removed from your arm.

Once the blood has been collected, the needle is removed, and the puncture site is covered to stop any bleeding.

In infants or young children, a sharp tool called a lancet may be used to puncture the skin and make it bleed. The blood collects into a small glass tube called a pipette, or onto a slide or test strip. A bandage may be placed over the area if there is any bleeding.
How to Prepare for the Test

Do not eat for 4 hours before the test.
How the Test Will Feel

When the needle is inserted to draw blood, some people feel moderate pain, while others feel only a prick or stinging sensation. Afterward, there may be some throbbing.
Why the Test is Performed

This test is done to determine if you have too much or too little vitamin D in your blood.
Normal Results

The normal range is 30.0 to 74.0 nanograms per milliliter (ng/mL).

Note: Normal value ranges may vary slightly among different laboratories. Talk to your doctor about the meaning of your specific test results.

The examples above show the common measurements for results for these tests. Some laboratories use different measurements or may test different specimens.
What Abnormal Results Mean

Lower than normal levels suggest a vitamin D deficiency. This condition can result from:

    Lack of exposure to sunlight
    Lack of adequate vitamin D in the diet
    Liver and kidney diseases
    Malabsorption
    Use of certain medicines, including phenytoin, phenobarbital, and rifampin

Low vitamin D levels are more common in African-American children, particularly in the winter, as well as in infants who are exclusively breastfed. Low vitamin D levels have also been associated with an increased risk of developing cancer. For more information, see the article on vitamin D deficiency.

Higher than normal levels suggest excess vitamin D, a condition called hypervitaminosis D.
Risks

Alternative Names
25-OH vitamin D test; Calcidiol 25-hydroxycholecalciferol test

From
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Title: Re: 123 Days PF And I Think I know Why
Post by Cosworth on Dec 22nd, 2011 at 4:18pm
Question for Batch or anyone.. I've been on a Fish Oil Regimen for a while for joint issues. My doctor recommended taking supplements that would provide betwen 3 and 4 grams combined of omega 3's. This requires much higher doses than recommended as part of this regimen. (I typically take between 2 and 3 grams of Omega 3's).   My question is whether taking significantly more fish oil would have any known negative consequence to this regimen?   

Background:  Longtime reader though i don't post much. Just entering a cycle.. :( I've been episodic sufferer with fairly consistent timing over the past 20 years typically early fall to early spring onset, usually one cycle a year lasting 10-14 weeks. As usual, i start getting hit and i come back to this wonderful board because it's the only place i feel like there is any understanding... and as always i feel a little guilty about having been away.  I'm determined to fight this latest cycle with all known natural treatments (that i can actually get) before going the way of prednisone, etc. I'm excited to try this regimen, and am just wondering if upping the fish oil portion presents any known problems?

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Dec 22nd, 2011 at 5:26pm
Cosworth

Hi.  I don't think your amount of Omega 3 will have any negative effect on the regimen. If any effect, a positive is more likely.

I think it's very common to be on-board when in cycle and the gradually get off-board  :)

I really hope the regimen works for you.  Very interesting that your cycle has just begun, because if the regimen kicks in, you'll know it's not the regular end of cycle.  Good luck!


Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 22nd, 2011 at 6:12pm
I started off taking 4000 MG (4 Grams) of Omega 3, but now in the name of conservation I take 3000 or 3 pills.

The Omega 3 I have is "select" and it has a higher concentration of EPA and DHA then most, I assume. Batch recommends EPA 360 mg/day, DHA 240 mg/day from 2000 to 2400 mg/day of fish oil a day.

My Omega 3 have 500 mg of Omega 3 (EPA 300 and DHA 200) from 1000 mg of fish oil, in each pill. I take 3 now, but took 4 a day for a week

So I'm taking EPA 900 and DHA 600, and took EPA 1200 and DHA 800 with no ill effects at all. I'm sure my bad Cholesterol took a good hit, and is still getting reduced, which can only be a good thing.

Just an early calculation by me, seems that around 75% of people find it works for them, and a good portion of those are PF. Give it a fair try and theres a good chance it will help, and even if not, it does a body good.  ;)

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 23rd, 2011 at 3:01am
NHS,

I suspect we're in violent agreement.  The basic anti-inflammatory regimen I developed calls for the Kirkland brand of calcium citrate as it is formulated with additional vitamin D3, magnesium and zinc, along with the trace minerals copper and boron to help maintain electrolyte homeostasis. 

When I ran this regimen by some of the leading experts in vitamin D3 therapy, it got a green light and a suggestion to add more magnesium...  which I have done with the "complete" version of this regimen by adding 400 mg. magnesium citrate or magnesium gluconate.  This brings the calcium-magnesium ratio close to 1:1, so there should be no imbalance for most CH'ers who use this regimen unless they have other medical problems listed below.

There's no clear consensus as to the ideal ratio of calcium to magnesium when it comes to taking these two supplements, save for a range of 4:1 to 1:1.  In addition, the Linus Pauling Institute for Micronutrient Research for Optimum Health suggests that adults 31 years and older have an RDA for magnesium equal to 420 mg/day for men and 320 mg/day for women.  They site a study where 600 mg/day magnesium helped prevent migraines. For reference, the IOM RDIs for magnesium in this same age group are 420 mg/day for men and 320 mg/day for women.  From my own experience, taking too much magnesium is easy to spot... as going over these values can result in osmotic diarrhea.

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The Linus Pauling Institute also contends:


"The active form of vitamin D [calcitriol - 25(OH)D] may slightly increase intestinal absorption of magnesium. However, magnesium absorption does not seem to be calcitriol-dependent as is the absorption of calcium and phosphate. High calcium intake has not been found to affect magnesium balance in most studies. Inadequate blood magnesium levels are known to result in low blood calcium levels, resistance to parathyroid hormone (PTH) action, and resistance to some of the effects of vitamin D."

"Magnesium deficiency in healthy individuals who are consuming a balanced diet is quite rare because magnesium is abundant in both plant and animal foods and because the kidneys are able to limit urinary excretion of magnesium when intake is low. The following conditions increase the risk of magnesium deficiency:

Gastrointestinal disorders: Prolonged diarrhea, Crohn's disease, malabsorption syndromes, celiac disease, surgical removal of a portion of the intestine, and intestinal inflammation due to radiation may all lead to magnesium depletion.

Renal disorders (magnesium wasting): Diabetes mellitus and long-term use of certain diuretics (see Drug interactions) may result in increased urinary loss of magnesium. Multiple other medications can also result in renal magnesium wasting.

Chronic alcoholism: Poor dietary intake, gastrointestinal problems, and increased urinary loss of magnesium may all contribute to magnesium depletion, which is frequently encountered in alcoholics.

Age: Several studies have found that elderly people have relatively low dietary intakes of magnesium. Intestinal magnesium absorption tends to decrease with age and urinary magnesium excretion tends to increase with age; thus, suboptimal dietary magnesium intake may increase the risk of magnesium depletion in the elderly."


Finally, this is a therapeutic regimen.  There is more than sufficient medical evidence to prove that a dose of vitamin D3 at 10,000 IU/day will result in a safe and stable level of 25(OH)D... ~ 90 ng/mL, (225 nmol/L) if the starting level is 26 ng/mL, (65 nmol/L).  At these levels, supplemental calcium and magnesium are prudent as are the other vitamin D3 cofactors. 

The only way to know for sure if this regimen is suspected to be creating an imbalance is to have a Chemistry Panel & Complete Blood Count (CBC) lab test done along with the test for 25(OH)D.  The test for Parathyroid Hormone (PTH) might also be a good idea as PTH plays a significant role in calcium homeostasis.

Hope this helps...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 23rd, 2011 at 4:49am
Hey Cosworth,

The amount of Omega 3 Fish Oil you're taking should work just fine without any problems.  I originally started this regimen with 3000 to 4000 mg (3 to 4 grams) of Omega 3 Fish Oil but dropped the dose to 2000 - 2400 mg/day to keep things simple when it appeared that amount worked just as well.

Please keep us posted on your results.  The survey of this regimen indicates CH'ers start experiencing a marked reduction in the frequency and severity of their CH in less than 24 hours to 10 days and most are pain free before the end of the third week.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Dec 23rd, 2011 at 5:49am

Magnesium:
A Key to Calcium Absorption

By Nan Kathryn Fuchs, Ph.D.



One of the most popular minerals in the news today is calcium, needed for strong bones and teeth. We are told to take increased amounts in our diet as a supplement to prevent osteoporosis and eliminate muscle cramping during menstruation or from over-exercising. Yet, calcium alone is often not enough. Without magnesium, calcium may be not fully utilized, and underabsorption problems may occur leading to arthritis, osteoporosis, menstrual cramps, and some premenstrual symptoms.

Perhaps the single most significant reason calcium malabsorption is so common today is due to a discrepancy between what we eat and how we digest and absorb the nutrients in our food. Our diets today are very different from those of our ancestors though our bodies remain similar.

Thousands of years ago, our ancestors ate foods high in magnesium and low in calcium. Because calcium supplies were scarce and the need for this vital mineral was great, it was effectively stored by the body. Magnesium, on the other hand, was abundant and readily available, in the form of nuts, seeds, grains, and vegetables, and did not need to be stored internally.

Our bodies still retain calcium and not magnesium although we tend to eat much more dairy than our ancestors. In addition, our sugar and alcohol consumption is higher than theirs, and both sugar and alcohol increase magnesium excretion through the urine. Our grains, originally high in magnesium, have been refined, which means that the nutrient is lost in the refining process. The quality of our soil has deteriorated as well, due to the use of fertilizers that contain large amounts of potassium a magnesium antagonist. This results in foods lower in magnesium than ever before.


ARTHRITIS AND OSTEOPOROSIS

Two major health problems, arthritis and osteoporosis, may be caused in part by a magnesium deficiency. When you look at how calcium is absorbed these problems become easier to understand, and often can be controlled through diet.

Magnesium is needed for calcium absorption. Without enough magnesium, calcium can collect in the soft tissues and cause one type of arthritis. Not only does calcium collect in the soft tissues of arthritics, it is poorly, if at all, absorbed into their blood and bones. But taking more calcium is not the answer; it only amplifies the problem. In fact, excessive calcium intake and insufficient magnesium can contribute to both of these diseases. Magnesium taken in proper dosages can solve the problem of calcium deficiency.
When calcium is elevated in the blood it stimulates the secretion of a hormone called calcitonin and suppresses the secretion of the parathyroid hormone (PTH). These hormones regulate the levels of calcium in our bones and soft tissues and are, therefore, directly related to both osteoporosis and arthritis. PTH draws calcium out of the bones and deposits it in the soft tissues, while calcitonin increases calcium in our bones and keeps it from being absorbed in our soft tissues. Sufficient amounts of magnesium determine this delicate and important balance.

Because magnesium suppresses PTH and stimulates calcitonin it helps put calcium into our bones, preventing osteoporosis, and helps remove it from our soft tissues eliminating some forms of arthritis. A magnesium deficiency will prevent this chemical action from taking place in our bodies, and no amount of calcium can correct it. While magnesium helps our body absorb and retain calcium, too much calcium prevents magnesium from being absorbed. So taking large amounts of calcium without adequate magnesium may either create malabsorption or a magnesium deficiency. Whichever occurs, only magnesium can break the cycle.

In experiments reported in "International Clinical Nutrition Review," a number of volunteers on a low-magnesium diet were given both calcium and vitamin D supplements. AU the subjects were magnesium-depleted and although they had been given adequate supplements, all but one became deficient in calcium. When they were given calcium intravenously, the level of calcium in their blood rose, but only for the duration of the intravenous feeding. As soon as the intravenous calcium was stopped, the levels calcium in the blood dropped. However, when magnesium was given, their magnesium levels rose and stabilized rapidly, and calcium levels also rose within a few days - although no additional calcium had been taken.
Dr. Guy Abraham, M.D., a research gynecologist and endocrinologist in premenstrual syndrome and osteoporosis has found strong evidence to suggest that women with osteoporosis have a deficiency of a chemical that is made when they take twice as much magnesium as calcium. In fact, he has found that when calcium intake is decreased, it is utilized better than when it is high. Dr. Abraham is one of many doctors and biochemists who advocate taking more magnesium to correct calcium-deficiency diseases.

A magnesium-rich diet can be helpful both for arthritis and to help prevent osteoporosis. This consists of nuts, whole grains such as brown rice, millet, buckwheat (kasha), whole wheat, triticate, and rye, and legumes including lentils, split peas, and a varieties of beans. A whole grain cereal or bread in the morning, a cup of bean soup at lunch, a snack of a few nuts, and serving of brown rice, millet, or buckwheat with dinner should help increase magnesium when a deficiency is suspected

Title: Re: 123 Days PF And I Think I know Why
Post by Cosworth on Dec 26th, 2011 at 1:00pm
Hey Batch,

Thanks for the info and reply - I've been away from my computer due to the holidays but I do have some interesting news to report. You mentioned a survey so if there is somewhere else i should be updating results let me know.  So,  I started the regimen (minus the magnesium which I still need to pick up) the day after i posted which was the 23rd i believe. As I mentioned, I am 99% sure as a long time CH sufferer that i was entering my cycle.  My cycles are pretty good bell curves with the beginnings having major shadowing which typically noticeable all day punctuated with minor clusters kip 1-3 that don't last a long time. My cycles progress to where in the peak weeks I'm usually getting hit 3-5 times a day with CH (kip 6-9) that typically last 1-1.5 hrs. with no O2.  Since discovering O2 about 5 yrs ago i get my e tanks filled and have pretty good success aborting within 20-30 minutes (usually).  Anyway, I am not sure but I think I have noticed a reduction in the shadowing since starting this regimen a few days ago. I'm still having shadows, but they don't seem to be progressing as i would normally expect them to.  In addition, i've done something the last couple of nights that i typically could never do once a cycle started which is have a couple of  drinks each of the last three nights.  Having a cycle start up right before the holidays when I am finally getting a few days off work and looking forward to a little festivity with the family was a real bummer and i guess in my own stupid way to defy the beast i decided i was going to make the beast prove he was back before deciding it was time to go on my yearly 3 month alcohol-free period.  (Alcohol always been a sure-fire trigger for me).  I'm very excited by the results i've read about and am really hoping it works for me.  I temper this with the knowledge that i have had cycles begin as usual with shadowing, etc. and then for inexplicable reason stop.. and wait a month or so and then begin again for real.  That's why i said i was 99% sure my cycle had begun. Usually once the heavy shadowing is at hand it's a done deal that i'm going to begin a cycle.   So, I just wanted to say thanks. Like so many others, anything that offers some hope to stop these @#% CH's is truly a Godsend.  I'm curious if other Episodic sufferers have been able to eliminate cycles completely to where this regimen has actually "busted" a cycle? 

Title: Re: 123 Days PF And I Think I know Why
Post by 69Strat on Dec 27th, 2011 at 6:06pm
Week 5. Just upped to 20,000 IU D3 at Batch's suggestion. Was chronic, 6+ per day up to Kip 8-10. Almost vanished during the day. Still have a 1 AM and 4 AM hit at about Kip 3-4. Remarkable improvement!

Title: Re: 123 Days PF And I Think I know Why
Post by MemyselfandI on Dec 27th, 2011 at 9:30pm
Hi All,
Has anyone considered adding B2 (Riboflavin) to the regimen?  I've noticed a lot of information online that it can help with migraine headaches.  I wonder if it would have the same effect for clusters?  Maybe adding B2 would help those who have been able to achieve a reduction in intensity but not able to go pf actually go pf.   
I've been in cycle for the last two months and on the D3 treatment for the last two weeks.  The reduction in intensity of the beast has been amazing.  I had a hit this morning and actually debated with myself if I needed to take an abortive to kill it or just live with it.  I'm hoping that a third week on the D3 I will be able to achieve pf status. 

Second question for the group.  How important is the vitamin K for the regimen?  I am unable to find it in Canada.  I don't think the government allows the sale of it. 

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 28th, 2011 at 12:20am
MM&I, 69Strat, Cosworth,

Your responses so far are what I've come to expect.  Not sure how much effect vitamin K has on all this, but it's becoming clear magnesium is essential to metabolize vitamin D3 into 25(OH)D effectively.  If you haven't added extra magnesium to bring the total supplement up to ~ 400 mg/day magnesium, do so...

From the data collected so far, it appears this regimen is equally effective for episodic and chronic CH'ers.

Hang in there the three of you and I'm sure you'll find the response to this regimen will improve even more...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Eroc on Dec 30th, 2011 at 1:00am
Batch,  I know you are a busy person helping many people who post here as I am also a busy guy with work and all.  So I will try to summarize as best as I can.  I started multiple treatments at the same time Lithium @ 900 mg p/d, 120 mg pred taper, 2 occipital nerve blocks, 10 MG melatonin at bedtine, and your regimine.  For that reason I am not able to complete the survey as I dont know what works.  I am still on the lithium and your regimin.  I also was able to find the K2 but am not taking the full dose as it is really expensive.   After starting all of those treatments my CH's halted quite rapidly.  I believe without checking my records that it was day 4 or 5 of the pred taper (3 days at 120 mg then taper by 10 mg P/d) and day 2 or 3 of the 123 regimin. 

I have been HA free for 16 days.  However I have been having daily what I believe to be some sort of non developing sinus infection/pressure that OTC meds seem to help with.  I dont seem to have many of the other symptoms of a sinus infection and it is also pressure that switches sides.  I do have a bit of a cough but basically no other symptoms. 

Tonight as I have tomorrow off I decided to give the whiskey test a try.  I feel as though I am shadowing but it is still very strange.  As I palpate my right eye (cluster side) it is much more sensetive than the left.  That coupled with the sinus pressure if that indeed is sinus pressure I am going to guess that I am not out of cycle yet and either the 15000 IU of D3 regimine or the lithium is doing its job.  I will update you tomorrow if I get hit while sleeping but I am crossing my fingers.  I am also thinking of upping the D3 to 20000 IU to see what happens there.  I am also going to schedule an appt with my GP to see if I should go on some antibiotics to see if that clears up the sinus pressure.  That pressure is deffinetly different than CH pain.  Again though it doesnt seem to be getting better or worse.  When I do have that appointment I will get my 25 OH D3 levels checked to report back to you. 

Additionally todays "vodka" test included several "rounds" of theraputic treatment.  Much needed as this is a very stressfull time of the year at work.   ;) 

Your input is welcome but I basically wanted to update you regarding my progress with this bout.  I am episodic with 2+ yrs between bouts.  32 YOA and this is my 5th diagnosed bout. 

Thanks again and boy do I hope that your D3 research leads to more CH research and perhaps someday an effective treatment for all.  (Insert C word) ;D 

Eric

P.S. Shout out to NHS as well.  I read "The CH cure?"  Pretty strong opposition over something that in the long run seems to be a breakthrough for many. 

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 30th, 2011 at 6:03pm
Hey Eroc.

Thanks for the wonderful post.  I'll try to be objective in my assessment of your present CH response to all the med's you've taken and are presently taking...  However, as I have a dog in the fight...  I'm sure some folks will still say I'm biased.

There's a simple and easy way to prove what's working... and what isn't...  between the lithium carbonate and the anti-inflammatory regimen in preventing your CH...  I've already tried the following stress test just to prove it to myself...

Stop taking the anti-inflammatory regimen...  My guess is within 24 to 48 hours you'll have depleted the reserves of 25(OH)D you've built up and be back in a high CH cycle with a solid CH hit...

Not to worry...  At the first sign of a hit, gobble down the regimen with the 20,000 IU/day vitamin D3 you were taking and bite down on a couple of the vitamin D3 softgel capsules to release the contents into your mouth and under your tongue for 30 seconds then wash it down with some juice or water. 

If your CH behave like mine...  you'll abort the hit in short order... like in less than 20 minutes with some deep breathing, and go back to being pain free...

After that... you and your doctor can decide what to do about whether or not to continuing taking the lithium carbonate...  As good as lithium carbonate can be for some CH'ers...  the odds are it wasn't responsible for your going pain free so rapidly...

You can wait until the new year before to try this stress test just in case I'm wrong about how fast you'll respond to the resumption of the anti-inflammatory regimen...  no sense in putting some good drinking time at risk on my count... 

When you're done with this stress test and have your 25(OH)D level tested... you can take the anti-inflammatory survey and provide us with your results...  one way or the other...

I've already got the results of your stress test sealed in an old Mayonnaise jar buried out by the woodshed.

Take care, have a pain free Happy New Year...  and please keep us posted...

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 30th, 2011 at 6:36pm
Pill (tablet) vs Soft-gel? At my local Wally-World they had Vitamins for 40% off, but there tablets. I asked the same Pharmacist who was less then helpful last time I ask, and he said that it wouldn't matter.

I asked him if I was taking them everyday, if it would really matter, since he said that the soft-gels are faster acting. I figured since my levels should be good when I'm done with the soft-gels, tablets should be good to 'maintain' my levels.

I thought of maybe taking half soft-gel, half tablet also.

Any thoughts?

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 30th, 2011 at 6:43pm

Eroc wrote on Dec 30th, 2011 at 1:00am:
I have been HA free for 16 days.  However I have been having daily what I believe to be some sort of non developing sinus infection/pressure that OTC meds seem to help with.  I dont seem to have many of the other symptoms of a sinus infection and it is also pressure that switches sides.  I do have a bit of a cough but basically no other symptoms.  


I'm not drawing conclusions, yet it may be worth noting that I also got an infection right after starting the regime. I got a bad ear infection, almost the day after starting. That might be too soon to be a result of, yet I haven't had a ear infection in almost 20 years.

I did have a mild cough for about a week after my ear cleared up, and even brought up some Flem, which would suggest mild bronchitis. Yet it was only once I coughed it up, and I've been infection free for a couple weeks now, and still PF.  ;D

Perhaps a mild infection is a possible side-effect?

I joked that the CH demon made his last stand in my ear before he got evicted from my head. lol. Well worth the trouble, either way.

I'm glad your getting relief also.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 30th, 2011 at 9:25pm
PlayDoh, Eroc,

Regarding the congestion, coughing, ear infection and sinus squeeze...  Cause and coincidence are two different animals...  I've not seen anything about the above conditions in the literature about vitamin D3 except to use it as a treatment or preventative for them.

There is a slight possibility of a mild allergic reaction to the vitamin D3.  This is relatively rare and you would have already known about it long before taking any vitamin D3 as you would be allergic to the UVB in sunlight.  In short you would experience some kind of skin reaction with itching, inflammation, swelling and blisters nearly every time your skin was exposed to direct sunlight for more than a few minutes.

Signs of an allergic reaction to vitamin D3 supplements would include: hives; difficulty breathing; swelling of your face, lips, tongue, or throat...  If you experience any of these symptoms, stop taking the entire anti-inflammatory regimen and see your doctor or PCP.

There's an easy way to see if you're having an allergic reaction to cholecalciferol...  Take a ball-point pen and draw a half-inch diameter circle on the inside of your forearm six to eight inches up from the wrist.  Then cut the tip off of a vitamin D3 softgel capsule and squeeze a drop into the circle.  Rub it in with a Q-tip or clean cotton ball and check it after 24 to 48 hours...  If you're using a tablet form of vitamin D3 crush a tablet between two spoons and add a few drops of water to make a paste then take a Q-tip and dab a bit of the paste in the circle and rub it in.

Signs of an allergic reaction would be redness and a slight swelling of the skin inside the circle. 

Now... before someone goes hyper over this...  there are any number of skin creams and lotions available that are formulated vitamin D3...  Again, see your PCP or neurologist if you think you're having an allergic reaction

PlayDoh... regarding tablets or liquid softgel forms of vitamin D3...  Your WallyWorld pharmacist is correct.  The liquid softgel capsules go into solution much faster... 

Having said that... we're talking vitamin D3 for its preventative effect and not as an acute treatment/abortive...  In this case we're taking enough vitamin D3 (cholecalciferol) so our body can metabolize it into its primary metabolite, 25(OH)D for use and storage to build up reserves...

Think about vitamin D3 and 25(OH)D as being akin to a bear eating lots of salmon during the summer and getting fat...  During the winter when the bear hibernates...  his body burns the fat. 

We do much the same thing with the 25(OH)D.  During the winter months when we can't get exposed to sufficient sunlight while clad in a bathing suit w/o sun block to make more vitamin D3...  so our liver and kidneys can metabolize it into 25(OH)D...  we burn our reserves of 25(OH)D.

Hope this helps.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by bsic on Dec 30th, 2011 at 10:48pm
10 days in and actually have been seeing an increase in frequency and intensity. :(. Still keeping the faith and taking the regimen daily

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Dec 30th, 2011 at 11:37pm
Thanks Pete.

bsic
Hang in there, it could take 30 days or more to get your levels right, and start to notice any effect.

Perhaps you might consider increasing your D3 intake to say, 15000 or 20,000 IU as I've read others have done. I'm sure Batch will advise you on the matter, if prudent. If he has the time, that is.

Title: Re: 123 Days PF And I Think I know Why
Post by bsic on Dec 31st, 2011 at 8:14pm
Just got my blood work back from last week.  When I got it tested last week, a few days into the regimen, my D levels were at 20!

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Dec 31st, 2011 at 10:12pm

bsic wrote on Dec 31st, 2011 at 8:14pm:
Just got my blood work back from last week.  When I got it tested last week, a few days into the regimen, my D levels were at 20!

Was the 25(OH)D concentration in ng/mL or nmol/L?  In either case you're deficient in vitamin D3...  Big Time!

Check your PM InBox tomorrow morning.

Take care,

V/R, Batch


Title: Re: 123 Days PF And I Think I know Why
Post by bsic on Jan 1st, 2012 at 9:14am
Hey Batch,

It's in ng/mL, 20.9 to be exact.  Look fwd to your pm!

Happy new yr!

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 1st, 2012 at 1:34pm
Hey Bsic,

Happy New Year to you too...   PM sent.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Dorothy on Jan 4th, 2012 at 8:08am
It's been quite a while since I checked in here (long remission) and because I've found some really helpful info on these forums in the past - I came to find any I could pass on to someone who seems in desperate straits.  His Health Ins have stopped paying out for his meds and 02.  I couldn't believe all the stuff I found about the Vitamin D3 therapy.  I have osteoporosis and I am very remiss in taking my D3 but I'll be taking it from now on - along with some additional Omega 3.  Batch, I have used your oxygen advice to show people and had great results with it - I showed it to the manager of my oxygen provider - it was easier than trying to explain to him about hyperventilation being necessary and the info about C02 build up etc.  I just printed some of your stuff out and happily he read through it all.  He even came out to visit me and took it all on board.  He now liases with OUCH as they try to improve 02 therapy in the UK.  It's fantastic there are people like you out there battling the beast. 

Happy New Year!

Dorothy

Title: Re: 123 Days PF And I Think I know Why
Post by IndianaJohn on Jan 4th, 2012 at 1:35pm
Hi, I could use a little help please...

I am not sure I have the correct formulations for the D3 regimen.  I tried it starting Dec. 10 and found no relief.  This is what I bought at Walgreen's and the dosage below:

Current D3 Vitamins

D3                  Brand:  Finest Natural®, 5000 IU soft-gels, D3 as cholecalciferol. X2

Omega 3 Fish Oil      Brand:  Finest Natural®, 1000 mg soft-gels, 600 mg Total Omega-3 Fatty Acids, NO LISTING for EPA or DHA. X2

Calcium      Brand:  Walgreen's, Calcium Citrate Plus with Magnesium tablets. X1
     Vitamin D3 (as cholecalciferol) 250 IU
     Vitamin B-6 (as pyridoxine hydrochloride) 10 mg
     Calcium (calcium citrate) 500 mg
     Magnesium (magnesium oxide) 80 mg
     Zinc (zinc oxide) 10 mg
     Copper (copper gluconate) 1 mg
     Manganese (manganese gluconate) 1 mg
     Boron (sodium borate) 1 mg

Magnesium      Brand: Nature Made®400 mg soft-gels X1

Potassium      Brand: Finest Natural®, Potassium Gluconate 595 mg (99 mg as Elemental Potassium), tablets. X1

8 oz. glass of lemonade from concentrate.

OTHER
Melatonin,       Brand: Nature Made®, 3 mg tablets. X2-4 at bedtime

Alive Men's energy mulitvitamin.

Next I kind of have a recent timeline of where I am at.

Current Timeline

Dec. 10, 2011      Started detox.  Off of all meds.  Started D3 regimen.

Dec. 29, 2011      Went to the doctor and got 60 mg Prednisone taper and 480 MG Verapamil ER.  Blood taken for Testosterone, CBC w/ sed rate, and 25(OH)D.  Received Oxygen set up for CH.  STOPPED D3 REGIMEN and Melatonin.

Jan. 1 – Jan. 2, 2012 Two nights no CH.
Jan. 3, 2012 Received blood test results.
Testosterone 401 – on low side
CBC normal
Sed rate normal, no inflammatory markers
25(OH)D = 31.8 ng/ml
Today, Jan.4, I talked to my GP about the result and I decided to restarted the D3 regimen at the above dosages. 

I am sorry this is so long, please bear with me.  My first question is about Vitamin K and Potassium.  Are they the same?  Am I over doing it with amount I'm taking above?  I realize my PF nights are more than likely due to the Pred.  But I was surprised my D3 levels were so low.  My next question is, are the formulations I bought adequate to cover the requirements of the D3 regimen?  Do they cover the basics?  Am I doing anything wrong?


Any insights or suggestions would be greatly appreciated....

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 4th, 2012 at 2:04pm
Hey Dorothy,

Thank you for the kind words...  but it's CH'ers like you who take the bull by the horns to educate doctors and home oxygen therapy providers that are making the real difference... 

You're providing the latest in continuing medical education (CME) with respect of oxygen therapy with hyperventilation as a safe and effective CH abortive, and the anti-inflammatory regimen as a safe and effective CH preventive.  Please keep it up... all physicians are required to accomplish CME each year...

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 4th, 2012 at 2:23pm
Well Like so many on here, I haven't been on in a while. So log in fact I had to re-register. Anyways quick history. 30 plus year episodic. And like so many others, things that worked before don't work again. As I hit my 50's I was hoping for it to go away. My father who had CH went into remission at 49. While my last 3 cycles have been what I would call mild, this one right now is not. My cycle's and triggers seem to be different than most but after years and years of trying to figure it out I was pleasantly surprised to find This post. I have tried most preventative and abortive med's and what I've found at least for me anyways, that they seem to just prolong my cycle, so I don't use them anymore. So the whole vitamin thing is right up my alley. Started 10,000 IU of D3 and 4000 Omega 3 a week ago. The first couple of day's seemed like it was helping but it seems to be waring off. Of course I hadn't read the whole post through and didn't realize that calcium, Magnesium is needed as well so I started that today as well as Lemonade. Let you know what Happens............ On a side note, Batch. You and so many others on here are more valuable to me than any of the nuero's I've been too. Most of the time I feel like I know more about CH than they do. In any case I thank you all for sharing what helps you get through these things......

Best regards
Rick

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 4th, 2012 at 2:24pm
Hey John,

Thank you for the "SITREP." You've got the right stuff...  The regimen you've selected is correct as well.  Your 25(OH)D lab results tell the story...  While the normal reference range for this metabolite of vitamin D3 is 30 to 90 ng/mL, the data I've collected from CH'ers who have gone pain free on this regimen suggests the target therapeutic range for a favorable response to this regimen is 60 to 90 ng/mL.  Restarting the anti-inflammatory regimen was a good move...

You need to increase your 25(OH)D concentration by 30 ng/mL.  Talk with your doctor about this...  At a vitamin D3 dose of 10,000 IU/day, it could take as long as two weeks for you to build 25(OH)D concentration to 60 ng/mL.  Doubling the daily dose to 20,000 IU/day might get you there a little faster...  Some CH'ers are working through their PCP and dosing as high as 30,000 IU/day...

I know that may sound like a lot...  but our skin can make 15,000 IU vitamin D3 in as little as 15 minutes of direct sunlight clad in a bathing suit...  so in reality...  30,000 IU/day of vitamin D3 is no biggie...  Please keep us posted...

The basic rule of thumb is have your 25(OH)D concentrations tested every 30 days if you exceed 10,000 IU vitamin D3/day.  And when you do go PF, drop the dose back to 10,000 IU/day.  That should hold you in the target therapeutic range.

Thanks again for the SITREP and take care

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 4th, 2012 at 5:06pm
Hey Rick,

Thanks for the kind words.  We CH'ers have the advantage over most of the neurologists who treat us...  Necessity is the mother of invention, and pain is a great motivator... 

Few neurologists suffer through very painful conditions like ours... Finding one who does like Dr. Todd Rozen, M.D., a chronic migraineur, is like finding a kindred spirit who really understands what we face on a daily basis.  Makes a big difference... The rest we'll just need to educate for now.

As I've indicated in earlier posts on the anti-inflammatory regimen with vitamin D3...  having the lab test for 25(OH)D is a big help in knowing where you are in the process of building sufficient levels of this vitamin D3 metabolite we need to reach a therapeutic response.   

And if you are fortunate enough to number among the 70% of CH'ers who respond to this regimen, be sure to take the survey after you've had a significant reduction in the frequency and severity of your CH or gone PF for a week or so.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Dorothy on Jan 4th, 2012 at 7:19pm
Maybe if I start on this I won't go into cycle.....

Thank you for the advice Batch, I've passed on the link to a few people.   :)

Title: Re: 123 Days PF And I Think I know Why
Post by bsic on Jan 5th, 2012 at 8:41am
15 days in, upped my dosage of D on Sunday and am taking all the supplements.

Seems to be fewer and less intense hits.  1-2 hits per night which O2 is handling great but still need imitrex for some.  Prior to that, it was 3-4 hits per night and O2 didnt really touch them. Think Im making progress or just ending my cycle-- either way im happy.

This has been the longest and most brutal of all my years with CH.  I cant WAIT until its over.

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 5th, 2012 at 10:39am
Hey Batch, I have a question for you. When do you take the calcium/mag/zinc and lemonade? Before, with or after the vitamins?

Thanks in advance
Rick

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Jan 5th, 2012 at 12:22pm

RTD wrote on Jan 5th, 2012 at 10:39am:
Hey Batch, I have a question for you. When do you take the calcium/mag/zinc and lemonade? Before, with or after the vitamins?

Thanks in advance
Rick


Rick,
I can answer that...WITH ;)! 
13+ of these horse pills all washed down with a tall glass of lemonade!  Good Luck!
-Gregg in Las Vegas

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 5th, 2012 at 12:32pm
Thanks Gregg............. You live in Las Vegas huh? Me too. 8-)

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Jan 5th, 2012 at 12:46pm
Hi Rick,
Yes, almost 20 years here in Sin City.  Anytime you want to get together for coffee, discuss ignorant Las Vegas neuros, etc; send me a PM and will meet and greet.
-Gregg

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 5th, 2012 at 1:24pm
So I take it you wouldn't recommend any LV Nuero's.... A meet and greet would be great.

Cheers
Rick

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Jan 5th, 2012 at 1:43pm
Rick,
Unfortunately, I have not found anybody who isn't ignorant and also egotistical prohibiting themselves from being educated by a 32 yr experienced CH sufferer.

Check your PM inbox for my phone #.
-Gregg

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 5th, 2012 at 10:14pm
Hey Dorothy,

Thanks for the plug...  Having more CH'ers try this simple regimen is going to result in more CH'ers discovering just how effective it can be in preventing CH...

Rick, Gregg, glad to see you two have made a connection.  I'm sure you'll have much to exchange as a meet between CH'ers is always a hoot.

Rick, regarding when to take the anti-inflammatory supplements...  As long as you're taking calcium citrate and no more than 500 mg in one dose, you can take it any time of the day...  If you're looking to maximize the buffering effect of calcium citrate and citric acid from lemonade or other fruit juice high in citric acid, taking the calcium citrate is best done an hour to half hour prior to the evening meal washed down with the lemonade.  This will have the calcium citrate completely dissolve and the buffer active when the stomach starts producing more acid to help digest the food you eat.

If you're taking calcium carbonate, it's best taken with food as this form of calcium requires an acidic pH to dissolve.  In short, take it just prior to or just after the evening meal.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 6th, 2012 at 12:05am
So I've been having a problem with, um, regularity which has become an issue for a few months before starting the regime. Yet 3 days ago I took some Ex-lax "gentle nature" with senna. I took some a couple hours after dinner, say 7 and again before bed at 11.

I also take an anti-depressant (SSRI), and I could feel withdraw symtoms just before I went to bed. SSRI's have a very short half-life, meaning they wear off and are out of your system in a day or so. Now when I woke up the next day, I felt like I hadn't taken an anti-depressant in 2 days, the withdraw symptoms were so bad.

Did I mention I got 2 kip 1-3's that night also? That tells me the regime is definitely keeping me PF, and I'm still in cycle.

The moral of the story is if your digestive system isn't operating normally, then your D3 regime probably wont be as effective. And, stay away from laxatives, at least during the first couple months or so.

I think I'll bump myself up to 15,000 IU D3 till I see my Dr in a couple weeks. I seem to be just getting enough D3 to stay PF. Yet that's a guess.

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Jan 6th, 2012 at 12:17am
Playdoh,
I think you make a great argument to speculate. 

Many Verapamil users get constipated as a side effect of the med.  I was one of the lucky ones and increased my daily fiber to avoid constipation. 

If your theory is correct, maybe that is why this vitamin regimen did not work for me. 

Curious what Niels and Batch have to say about your theory!? ::)

-Gregg in Las Vegas

Title: Re: 123 Days PF And I Think I know Why
Post by Dorothy on Jan 6th, 2012 at 5:33am
I'm loving these posts, it's all so positive!  I've been looking at OUCH's facebook page and there's a lady on there who is taking the high dose vitamin D3 so the word is getting out  :)

Title: Re: 123 Days PF And I Think I know Why
Post by Dorothy on Jan 6th, 2012 at 5:36am
someone has just asked me for the link  :)

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Jan 6th, 2012 at 9:10am
Keep spreading the good news!  ;) I'm convinced the regimen is why my fall cycle never materialized, I'm a year rounder on this regimen for good.

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 6th, 2012 at 10:47am
Batch,
I don't know if I'm doing this wrong and unfortunately sometimes don't understand your vast knowledge of how this all works. I started the with 10,000 IU-D3/4000 omega3 a week ago. Went and got the Nature Made Calcium 333mg/Mag 133 mg/zinc 5 mg/D3 200 IU and started taking that 3 days ago. Took 1 the first day. 2 the next 2 days. I'm a little confused on the difference between Calcium Carbonate and Calcium Citrate. In any case I notice you said in an earlier post no more than 500 mg of Calcium, which by taking two a day I'm getting 666 mg. Is that too much? Should I change to Calcium Citrate?... The reason I ask is because I'm not having much success and while I know some things work for some and not for others, I want to give this regime a fair shake to work especially since there seems to be zero side effects. Through the years and all the stuff that I've tried and had work one time and not the next I'm not surprised. I appreciate you taking the time with this and your patience with me.

Thanks
Rick

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 6th, 2012 at 4:47pm
Hey Rick,

Good questions and I'm glad you've started the anti-inflammatory regimen...  I think you'll find that was a wise decision...

It looks like I should have explained the calcium dosing strategy a little better... 

For starters... You're ok in splitting the calcium supplement dose to twice a day...   The calcium to magnesium ratio is also excellent in the supplements you're taking...  There's no consensus on the best calcium to magnesium ratio but it appears that anywhere in a range of 4:1 down to 1:1 is acceptable. 

According to the experts at the Vitamin D Council, magnesium is one of the most important "Cofactors" that enable vitamin D3 to be metabolized into 25(OH)D.  Vitamin K2, Zinc and Boron are the other cofactors.

See:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE for an explanation of why we need to take these cofactors when taking vitamin D3.

This link also has another link to ZRT Labs where you can order a 25(OH)D home blood spot test kit for $65 and you don't need an Rx or a trip to the doctor's office...  I have two of the kits sitting next to my computer...

Regarding the dosing limits on calcium... The body can only process 500-600 mg of calcium effectively in a single dose...  any more than that and the excess calcium goes down the drain without doing any good...  No bad side effects... you're just not getting the best bang for the buck...

As far as the difference between calcium carbonate and calcium citrate...  Both can be effective, but you get better bioavailability (better absorption so more reaches your system) with calcium citrate or calcium gluconate than with calcium carbonate.  Calcium carbonate has a stronger chemical bond that requires a low pH (more acid) to break down or disassociate into it's ionic components and into the bloodstream...  Accordingly,  calcium carbonate should be taken with food so the hydrochloric acid in the stomach can break it down...

You're doing great at this point and the only thing I'd suggest is to ask your PCP or neurologist for the lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D so you'll know where you are in the process of elevating the level of this vitamin D3 metabolite up and into the therapeutic range for cluster headache.

Data I've collected from CH'ers who have gone pain free of their CH while taking this regimen and posted the results of their 25(OH)D lab tests, suggest the target therapeutic range of 25(OH)D concentrations needed to remain PF of cluster headache is 60-90 ng/mL, (150-225 nmol/L).

Assuming normal kidney and liver functions, the average adult will metabolize vitamin D3 into 25(OH)D and increase its serum concentration by 0.444 ng/mL/day at a dose of 10,000 IU/day vitamin D3...

So let's use the following example to show why some CH'ers respond to this regimen in a few days while others take up to three weeks to a month... or much longer before going PF.

Let's say your 25(OH)D tested at 20 ng/mL before starting the anti-inflammatory regimen and you need to have it at 60 ng/ml in order to be PF from your CH.  That means you need to increase the concentration of your 25(OH)D by 40 ng/mL.

If you do the math...  Divide 40 ng/mL by 0.444 ng/mL/day and you get 90 days...  That means it could take 90 days at a dose of 10,000 IU/day vitamin D3 to experience a favorable reaction to the anti-inflammatory regimen... because it would take that long to build 25(OH)D reserves to a therapeutic concentration...

Although responses to the On-Line Anti-Inflammatory Regimen Survey are coming in slower than I'd hoped, the time to respond to this regimen is holding consistent. 

So far the Survey data suggests that most CH'ers will respond to the anti-inflammatory regimen with a significant favorable change in CH patters within 10 days after starting this regimen and nearly all who do have a favorable response, are pain free by the end of the third week...  Two have taken as long as a month.

Bottom line...  take the test for 25(OH)D even if you've already started the anti-inflammatory regimen...  and take it again after you've gone pain free.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by MemyselfandI on Jan 6th, 2012 at 8:45pm
Hey Gang,
I had an interesting email from my pcp today.  Two days ago after 3 weeks on the vitamin d therapy I had my 25(OH) D level tested.  (She didn't leave me the units for the level but since we're in Canada I'm going to assume that the level is in nmol/L so I'll convert to ng/ml for simplicity)  The vit D level was at 23.6 ng/ml. 
I have noticed since the start of the therapy that the headache intensity has dropped.  At 2.5 weeks I was wondering why I was still getting milder hits.  I can see the reason now.  Even at the low Vit D level I had a hit yesterday that I was able to kill off with just tylenol. 
I'm excited to try and get my D level up to the optimal level in the 60 - 90 ng/ml range.  I might even be able to break out the alcohol again. 


Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 6th, 2012 at 9:33pm
Hey MM&I,

Great SITREP!  Woo Hoo!!!  I still find it very exciting to hear that this simple regimen of vitamin D3 and mineral supplements has given another CH'er back a quality of life none of us thought possible with CH...

The important thing to remember now before you get cocky like I did and stop taking this regimen... (I did it as a stress test of my 25(OH)D reserves and got nailed 8 days later...) is the anti-inflammatory regimen not a cure...  It's only a preventative and you still have CH.

You'll need to stay on this regimen for life if you're a chronic CH'er...  and there are several episodic CH'ers who are staying on this regimen while out of cycle with the hope it will prevent the next cycle...

Accordingly, if you can swing it, try to have your 25(OH)D tested again after going pain free and staying that way for at least a week...  We're all a little different in the rates that we produce and burn 25(OH)D...  so this lab test should give you the lower boundary of your 25(OH)D therapeutic range for CH...  That will be an important number to remember as will the number of days it took to get there and go pain free at a vitamin D3 dose of 10,000 IU/day.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by MemyselfandI on Jan 7th, 2012 at 9:29am
Thanks for the kind words Batch,
I was 23.6 ng/ml after three weeks on the therapy.  Using your .444 ng/ml/day as a rough guide I've raised my 25(oh) D level 6.6 ng/ml in three weeks.  That appears, for me, to drive the beast down.  I'm hopeful that another couple of weeks on the regimen those mild hits will disappear. 
Another interesting thing that my pcp suggested in the email that I take vit d (she must have forgotten about me telling the dose I was on) to raise my D level to a minimum of 32 ng/ml. 
I want to throw out a hypothesis that I would love to hear what the group thinks.  What if CH, for some of us, isn't the disease but a symptom?  For those of us that the vit D regimen has been successful, perhaps the CH is the result of an extremely low Vit D level.  Maybe keeping our vit D levels in the 60 to 90 ng/ml will keep the beast at bay.   

ttyl  :)

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 7th, 2012 at 10:22am
MM&I,

Interesting hypothesis... I've had similar thoughts...  On face value, the relationship between 25(OH)D levels and CH appears closely akin to that of rickets where a lack of vitamin D, calcium or phosphates leads to softening and weakening of the bones.

Unfortunately, there are so many factors and interrelated neurochemical processes involved in the pathogenesis of cluster headache, there's no way I can get my head around them, let alone understand how they relate to increased levels of 25(OH)D...  Why 30% of the CH'ers who try this regimen don't respond begs even more questions...

That's why I've opened up a few of the giants in the field of neurology specializing in our disorder with information about this regimen... I've sent them the response data I've collected so far from CH'ers like you who have taken the ant-inflammatory regimen with vitamin D3 and had their 25(OH)D level tested along with my own observations. 

Hopefully we can come up with the funding to buy them the time and facilities needed to answer questions like yours.

Take care and ttfn,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 7th, 2012 at 10:33am
Thanks for the info on the Calcium Batch. I think I'm understanding it now. I'll keep plugging away on this and remain hopeful. Its actually cheaper for me to get the 25(OH)D test done at the doc. I need to get him to script me some O2 anyways. I definitely wanna try that again as I don't think I gave it a fair shake the first time around.................. On a side note I had to chuckle a little bit when I read how many of us use the "Beer Test" when we think the cycle is over.......... I thought I was the only one. ;)

Title: Re: 123 Days PF And I Think I know Why
Post by bsic on Jan 8th, 2012 at 8:53am

bsic wrote on Jan 5th, 2012 at 8:41am:
15 days in, upped my dosage of D on Sunday and am taking all the supplements.

Seems to be fewer and less intense hits.  1-2 hits per night which O2 is handling great but still need imitrex for some.  Prior to that, it was 3-4 hits per night and O2 didnt really touch them. Think Im making progress or just ending my cycle-- either way im happy.

This has been the longest and most brutal of all my years with CH.  I cant WAIT until its over.


About 2.5 weeks in now-- upped my D3 to from 15,000 to 20,000 UI on Thursday.  Friday was my FIRST PAIN FREE NIGHT since early Dec.    And followed by a second last night!!

I did get VERY weak hits shortly after waking up in the AM (fully rested, i might add!).  But they were aborted in 2-3 min with O2, incredibly fast.

Just thought id share-- if you dont see results in a few days dont get discouraged, keep the regimen up and possibly increase your D3!!

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Jan 8th, 2012 at 9:29am
Great news to start a Sunday with. Keep beasty in full retreat! ;)

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 8th, 2012 at 1:47pm
Here's some food for thought. When I first started this regime I was only taking 1200 IU of D3 for almost the first week. Yet at day 2 I was PF. I was taking 1200 mg of Calcium Citrate with D3 (200 IU). In 4 pills (300 mg Calcium times 4). I was also taking 4 1000 mg Omega 3 and a multi-vitamin.

Since I realized that it only takes a single missed day to get Pain again, I thought I'd taper each ingredient to find which ingredient(s) were doing me the most CH-free benefit.

Well yesterday I only took 2 Calcium Citrate with D3 pills (600 mg Calcium) and this morning I have a definite shadow/ baby CH.

I've only had pain when I either delayed my daily dose by over 12 hours, or when I took a laxative, so I think its noteworthy.

ATTN Las Vegas, MM&I, and all others not getting relief or complete relief from the regime. I would consider increasing your Calcium Citrate intake to 1200 mg, since for me I suspect its potentially the "Main ingredient" and 600 mg doesn't seem to be enough.

I don't like to go against anything Batch suggests, yet my results seem pretty clear.

Perhaps there are 2 or more ways to be D3 deficient? Since D3 needs Calcium to get absorbed, perhaps being Calcium deficient get you to the same place, D3 deficient. Yet taking more D3 wont eliminate your deficiency.

Either way, I've been taking 1200 mg of Calcium Citrate for almost a month now, and have had no ill effects of doing so.

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Jan 8th, 2012 at 3:49pm
PlayDoh - I believe the key component, besides D3, is magnesium. It has critical impact om how the body uses the D3.  If your really want to experiment, drop Mg.

Magnesium is best taken i two doses, morning and evening. I've been doing that for more than a month now, and haven't had a single shadow.


Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 8th, 2012 at 3:59pm
At first the only Magnesium I was taking was in the multi-vitamin at 100 mg. That's not a tiny amount I suppose, but its nearly as likely a key-component.

Since then I've upped my Magnesium 500 mg with separate Magnesium supplements, so now I'm at 600 mg.

Thanks for the suggestion, I'll be doing some more experiments, for my own curiosity.

Title: Re: 123 Days PF And I Think I know Why
Post by nhs on Jan 8th, 2012 at 7:32pm
Hi PlayDoh

I have been pain free for 3 years and started my treatment with vitamin-D3 and Magnesium. Later I added Zinc and Boron to my regime.

I havn't taken any Calcium besides what I get from my diet. To much Calcium from suplement and milk, is maybe one of the major factors in a lot of diseases. Vitamin-D3 don't need Calcium to get absorbed, but when taking Vitamin-D3, you will get more Calcium absorbed from your diet.

At the moment I take:

7000 IU Vitamin-D3 (Vitamin-D level = 60 ng/ml)
600 mg Magnesium Citrate (Don't take Magnesium Oxide)
30 mg Zinc Citrate
3 mg Boron

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 9th, 2012 at 8:45am
Don't know if its because I changed from Calcium Carbonate to Calcium Citrate or because I upped my D3 dose from  10,000 IU to 15,000 IU or because I met another Cluster head for the first time but I had a real good day/night yesterday. Only 1 five minute k2 last night. Hopefully this is really starting to work for me................ Really enjoyed meeting Las Vegas Gregg and his girlfriend yesterday.

Rick

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 9th, 2012 at 4:38pm
Awesome Rick. Calcium Citrate is a lot better from what I read, as its gets absorbed much easier. I read if you put a pill in some sider-vineger (which is similar to stomach acid) and check it in an hour to see if its dissolved, you can see how Calcium Citrate is better then Carbonate.

Was only 2 days till I went PF, so fingers crossed for ya.

Title: Re: 123 Days PF And I Think I know Why
Post by MemyselfandI on Jan 9th, 2012 at 10:18pm

PlayDoh wrote on Jan 8th, 2012 at 1:47pm:


ATTN Las Vegas, MM&I, and all others not getting relief or complete relief from the regime. I would consider increasing your Calcium Citrate intake to 1200 mg, since for me I suspect its potentially the "Main ingredient" and 600 mg doesn't seem to be enough.

I don't like to go against anything Batch suggests, yet my results seem pretty clear.

Perhaps there are 2 or more ways to be D3 deficient? Since D3 needs Calcium to get absorbed, perhaps being Calcium deficient get you to the same place, D3 deficient. Yet taking more D3 wont eliminate your deficiency.


That is a very interesting observation you have found.  I've found over the last few days that the vit d regimen has been very effective.  I've been pf for the last three days.  As I mentioned to Batch in a previous post perhaps CH for some of us isn't the disease but a symptom.  In your case it could be low calcium.  I've had a full blood workup from my doctor at the start of January (including 25(OH)D and free testosterone) and the only item to come back low was the Vit D. 
I think it's important to try and look at all aspects of our health and eliminate any issues.  After suffering with CH for 10 years I finally got off my butt a couple of years ago and utilized my health care system to get to the bottom of a couple of issues.  After years of nagging I finally allowed my wife (a nurse) to book me a sleep study and talk to a sleep specialist.  The results from the sleep doctor were crazy.  It turned out that while I slept my O2 levels were dropping into the very low 70's when I slept and I had an upper airway restriction that prevented me from breathing through my nose while I slept.  After surgery to repair the upper airway restriction and CPAP to control the night time airflow I had knocked the CH down to two major episodic hits per year.  Talking with my sleep doctor a couple of weeks ago there is some early studies looking into the link between sleep apnea and CH.  I was told that 1 in 7 people usually need CPAP to prevent OSA and some of those could be triggering CH.  If we are using O2 to hyperventilate to abort perhaps lack of O2 is causing. 
I've looked into the upper airway restriction a little bit and my information shows that mouth breathing can cause a change in the blood gas levels.  As Batch has shown earlier in the thread a small change in the PH of the body can have a dramatic effect on CH. 
I'm not trying to imply that this will work for everyone but the OSA, airway issue and low Vit D level all seemed to be contributing factors for CH for me.  Hopefully with these issues out of the way I may have finally gained an upper hand on the beast. 
I am excited to see the prospects of what the next year will bring.  Hopefully many more pain free days ahead.

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 10th, 2012 at 10:55am
Its almost like I'm afraid to post my progress with the vitamins for fear of jinxing it but I feel like it just might be having some effect. I do feel like the Calcium citrate is having a much better effect than the carbonate. In any case after having only a short K2 the day before, yesterday was a short lived K3 during the day and a 5 minute K2 in the early evening before bed. Slept good all night which is what is starting to make me a believer. ........ Fingers crossed

Rick ;)

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 10th, 2012 at 11:11am
Hey Rick,

The news from you just keeps getting better...  I wouldn't worry about jinxing your present CH pattern...  as long as you continue with the vitamin D3 and the rest of the cofactor mineral supplements.

What brand of calcium citrate are you taking?  If it's the Kirkland brand of calcium citrate, two tablets (500 mg. calcium) also contain 800 I.U. vitamin D3.  If another brand, check the assay for vitamin D3.

I suspect the improvement in your CH pattern with the drop in frequency and severity of your CH is due to the extra vitamin D3 in the calcium citrate tablets.

If I'm correct, you should be able to go completely PF by adding another 5,000 IU/day vitamin D3 to your present intake of this supplement.

Please let me know.

And for the rest of the readers, if you've been using this regimen and haven't taken the Anti-Inflammatory Survey at the following link, please do so...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

I figure there are at least another 75 to 80 of you out there who haven't taken this survey.
Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 10th, 2012 at 11:26am
Okay Batch, now I'm getting confused again. I thought you said only 500 mg Calcium citrate a day? That we can't absorb more than that. I should be taking 2 day? Like a morning and evening thing? Also I'm at 15000 IU D3 now. You suggest an additional 5000 IU a day? And yes it is the Kirkland brand Calcium citrate.

Thanks again Batch
Rick

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Jan 10th, 2012 at 11:29am

RTD wrote on Jan 9th, 2012 at 8:45am:
Don't know if its because I changed from Calcium Carbonate to Calcium Citrate or because I upped my D3 dose from  10,000 IU to 15,000 IU or because I met another Cluster head for the first time but I had a real good day/night yesterday. Only 1 five minute k2 last night. Hopefully this is really starting to work for me................ Really enjoyed meeting Las Vegas Gregg and his girlfriend yesterday.

Rick



RTD,
Good to meet you too brother.  Hopefully this vitamin regimen works for you.
-GTD ;D

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 10th, 2012 at 11:39am
Gregg,

I have a feeling we'll be bro's for life. We're too much alike. Plus wifey wants to meet you two.

Rick

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 10th, 2012 at 1:26pm

RTD wrote on Jan 10th, 2012 at 11:26am:
Okay Batch, now I'm getting confused again. I thought you said only 500 mg Calcium citrate a day? That we can't absorb more than that. I should be taking 2 day? Like a morning and evening thing? Also I'm at 15000 IU D3 now. You suggest an additional 5000 IU a day? And yes it is the Kirkland brand Calcium citrate.

Thanks again Batch
Rick


2 a day (500mg of Calcium) is the recommendation. spreading them out is probably a good tactic. And I'm pretty sure he's suggesting 20,000 IU of D3.

Yet check your Calcium Citrate bottle to see how much Vitamin D(3) is in them. then subtract 20,000 from how much is in your Calcium Citrate total, and then take the resulting numbers worth of D3 supplement.

I.E   Calcium Citrate pill contains  250 mg Calcium and 400 IU of Vitamin D(3) then 2 pills are 500 mg Calcium Citrate and 800 IU Vitamin D(3)

20,000 IU recommended intake, minus 800 from Calcium pills = 14,000 IU D(3) you need to supplement with D3 pills.


If it's the Kirkland brand of calcium citrate, two tablets (500 mg. calcium) also contain 800 I.U. vitamin D3.

If I'm correct, you should be able to go completely PF by adding another 5,000 IU/day vitamin D3 to your present intake of this supplement.

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 10th, 2012 at 1:43pm
Well I did another experiment yesterday/today. I took only 900 mg of Calcium Citrate yesterday, and again this morning I had a Kip 1.

I'm afraid to miss a day of Calcium all together, but I suppose I should later. I know a couple times in the past month I took only 600 mg of Calcium, and a couple times I got small hits, but I didn't keep a diary (never have), so maybe I just didn't connect the dots earlier.

I've been looking at my diet to see how much Calcium I'm getting and its not a lot. I certainly don't eat my "5-6 fruits and veggie servings a day", plus I usually don't eat until dinner time, which also isn't good.

Too much calcium can be harmful, so please don't think I'm suggesting everyone take 1200 mg, and although some sources I've read concur with Batch's "500 mg is all the body can absorb at once", my head seems to disagree.

A good source (JAMA) suggested "no more than 1.2 to 1.5 grams per day" (1200 mg to 1500 mg).

So it seems my 1200 with little diet intake, is safe and withing guidelines.

If your not PF with the 500 mg Calcium, within a month or so, I think its worth a try. It seems to be immediate results for me, as in the pills I take today effect me completely tomorrow. So if you did give 1200 mg Calcium a try and didn't see results right away, I wouldn't suggest you continue for more then a week.

And again, I'm not a Dr or have any medical education. It would be best to discuss it with someone who is educated, like a Dr or Pharmacist.

I'm also basing this on 2 separate days of "conclusion", which isn't definitive by any standard. Yet if your head is splitting, I think trying safe, but unproven therapies is worthwhile. I know I'd try it in a heart beat.

Title: Re: 123 Days PF And I Think I know Why
Post by IndianaJohn on Jan 10th, 2012 at 1:52pm
Just to add my own 2 cents worth....

I am on the D3 regimen at 30,000 IU/day in order to get my levels up before my Pred taper runs out.  I was having some pretty good shadows and other minor HA's.  I increased my calcium dosage from 500 mg/day to 1000 mg/day and the shadows stopped.

So there may indeed be a connection....

John

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 10th, 2012 at 2:02pm

MemyselfandI wrote on Jan 9th, 2012 at 10:18pm:
That is a very interesting observation you have found.  I've found over the last few days that the vit d regimen has been very effective.  I've been pf for the last three days.  As I mentioned to Batch in a previous post perhaps CH for some of us isn't the disease but a symptom.  In your case it could be low calcium.  I've had a full blood workup from my doctor at the start of January (including 25(OH)D and free testosterone) and the only item to come back low was the Vit D. 
I think it's important to try and look at all aspects of our health and eliminate any issues.  After suffering with CH for 10 years I finally got off my butt a couple of years ago and utilized my health care system to get to the bottom of a couple of issues.  After years of nagging I finally allowed my wife (a nurse) to book me a sleep study and talk to a sleep specialist.  The results from the sleep doctor were crazy.  It turned out that while I slept my O2 levels were dropping into the very low 70's when I slept and I had an upper airway restriction that prevented me from breathing through my nose while I slept.  After surgery to repair the upper airway restriction and CPAP to control the night time airflow I had knocked the CH down to two major episodic hits per year.  Talking with my sleep doctor a couple of weeks ago there is some early studies looking into the link between sleep apnea and CH.  I was told that 1 in 7 people usually need CPAP to prevent OSA and some of those could be triggering CH.  If we are using O2 to hyperventilate to abort perhaps lack of O2 is causing. 
I've looked into the upper airway restriction a little bit and my information shows that mouth breathing can cause a change in the blood gas levels.  As Batch has shown earlier in the thread a small change in the PH of the body can have a dramatic effect on CH. 
I'm not trying to imply that this will work for everyone but the OSA, airway issue and low Vit D level all seemed to be contributing factors for CH for me.  Hopefully with these issues out of the way I may have finally gained an upper hand on the beast. 
I am excited to see the prospects of what the next year will bring.  Hopefully many more pain free days ahead.


Very, Very interesting! I've thought about sleep issues for a long time. I posted a survey on sleep positions, as I figured my stomach sleeping could be a culprit.

At first, 12 years ago, I only got a CH when I either drank alcohol, or took a nap at lunchtime. I would nap on this couch at work, and later suspected my neck position could be responsible.

Now a days I snore, and often wake up with a dry-stuffed nose, and I also get night hits almost exclusively. Coincidence?

I like your train of thought, that perhaps CH'ers have a trigeminal nerve that's constricted or something, that causes it to be irritated when inflamed by blood pressure or CO2 levels. From multiple sources.

I read about a woman who had part of her trigeminal nerve severed via surgery and part of her face is numb. She's been CH pain free for over 5 years.

Now perhaps our trigeminal nerve, or its surroundings is the factor that makes a CH possible. And if conditions cause pressure on it, the result is a CH. Maybe for some there are multiple "conditions" that cause pressure/CH. Maybe for some its a form of sleep apnea or poor breathing while sleeping?

Like you said, CH is the symptom, not the condition. That might offend some people, who feel it belittles their pain, yet really its semantics.

Its likely, IMO, a symphony of conditions that precipitate a CH.

I hope I'm not 'Hi-Jacking' this tread, yet at 22 pages I think its too late to worry about that. lol

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 10th, 2012 at 2:08pm
PlayDoh
CH.com Junior
**




     




2 a day (500mg of Calcium) is the recommendation. spreading them out is probably a good tactic. And I'm pretty sure he's suggesting 20,000 IU of D3.

Yet check your Calcium Citrate bottle to see how much Vitamin D(3) is in them. then subtract 20,000 from how much is in your Calcium Citrate total, and then take the resulting numbers worth of D3 supplement.

I.E   Calcium Citrate pill contains  250 mg Calcium and 400 IU of Vitamin D(3) then 2 pills are 500 mg Calcium Citrate and 800 IU Vitamin D(3)

20,000 IU recommended intake, minus 800 from Calcium pills = 14,000 IU D(3) you need to supplement with D3 pills.


If it's the Kirkland brand of calcium citrate, two tablets (500 mg. calcium) also contain 800 I.U. vitamin D3.

If I'm correct, you should be able to go completely PF by adding another 5,000 IU/day vitamin D3 to your present intake of this supplement.





Thanks for your imput. Yes it is the Kirkland brand which says 500 mg on the bottle but of course I didn't read the serving size say's 2 pills a day so I'll give that a go. I'm going to wait 1 more day on the D3 because I just upped it too 15000 IU   (3 5000 IU)2 days ago and want to give that one more day. So in actuality I'm on 16600 a day because of the 800 IU in the calcium.

Thanks again
Rick ;)

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 11th, 2012 at 9:51am
Unfortunately yesterday wasn't so good. 2 daytime K 3-4's and 2 nighttime K6-7's. The only thing I did different was taking 2 of the Calcium citrate instead of one. I'm gonna try going back to the 1 CC see if that changes things and also increase to 20.000 IU D3............... Still hopeful.

Rick

Title: Re: 123 Days PF And I Think I know Why
Post by Chad on Jan 11th, 2012 at 2:03pm
When I first started this regimen at the very beginning of my cycle 4 weeks ago, it seemed to work almost immediately, however I'm still in cycle getting hit 3-4x/day.  Mainly though the night.  I am also dosing with rc seeds every 5 days.  My vitamin D3 intake is now 15,000 iu, 500 mg calcium citrate and 500 mg magnesium.  I took Batches survey 3 days after the start of the regimen and I should have waited because I am not getting relief up to this point.  I got the usual dandy hits after dosing, but a great nights sleep.  Usually by day 3 the seeds bog down the cycle.  I think I will try increasing the calcium citrate to 1000mg spread out over the day to see what happens.  I got nothing to lose.  This is always an experiment with hope :)

Title: Re: 123 Days PF And I Think I know Why
Post by Cosworth on Jan 11th, 2012 at 2:08pm
Here's my update: I think I jumped in here around p. 20 or so :)  I began heavy shadowing around Dec.22nd (or so) and was quite sure cycle was starting. I'm Episodic and tend to get one long cycle (2-3 months) each year.  I began the vitamin regimen pretty quickly upon learning about it and i'd say by the 24th I was on board.   I'm doing around 11,ooo IU's D3, 600 mg. Calcium citrate (all at once), Multivitamin, 500 mg. Magnesium, plus around 3000 mg Omega 3's (fish oil) per day.  I actually take the fish oil during the morning and night.  I have not had a significant hit (no more than a kip2) since this started. I have continued to shadow off and on pretty consistently each day which if nothing else confirms for me 100%  that I was definitely beginning a cycle. I wondered if this could have been a "false start" to a cycle which has happened to me before but I think now this was definitely a cycle starting and by now i'd usually be in full blown 2-5 clusters a day in the 6+ kp range.   I'm wondering which would be the #1 item in the regimen to increase to try and stop the shadowing?  I guess i'll start one at a time to increase and hopefully i'll be able to isolate which one does the trick! I' m so hopeful that this may be a long term solution to this disease and that it will provide relief to many of you out there on this board.   (Batch, gonna go take the survey)

Title: Re: 123 Days PF And I Think I know Why
Post by Cosworth on Jan 11th, 2012 at 2:12pm
I saw someone post earlier (and now i can't find it) about what type of Magnesium to take. I'm taking Magnesium Oxide. I think the poster said don't take this type and instead take Magnesium Citrate?   Can anyone answer this one? Is Magnesium Oxide bad?   

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Jan 11th, 2012 at 2:15pm

Cosworth wrote on Jan 11th, 2012 at 2:12pm:
I saw someone post earlier (and now i can't find it) about what type of Magnesium to take. I'm taking Magnesium Oxide. I think the poster said don't take this type and instead take Magnesium Citrate?   Can anyone answer this one? Is Magnesium Oxide bad?   


Magnesium Citrate is what is recommended for this vitamin regimen.

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 11th, 2012 at 3:18pm
Chad,
I hope it works for you, and interested to say the least. Would you say your diet could be lacking in Calcium? I've never given it much thought, but I have to admit mine is certainly lacking.

Title: Re: 123 Days PF And I Think I know Why
Post by Chad on Jan 11th, 2012 at 3:38pm
Playdoh,  I need to research my diet more.  I eat the same thing almost daily.
I start with whole wheat peanut butter toast for breakfast, then a banana for snack.  Salad or tuna sandwich for lunch, yogurt for snack, balance meal for dinner.  I refrain from milk and eggs due to my cholesterol. So, I need to see how much calcium is in these foods as I'm a nutritional idiot, lol!  I'm increasing my calcim citrate today to 1000mg.  I already took 500 and looking to take another 500 at bed time.

Title: Re: 123 Days PF And I Think I know Why
Post by Chad on Jan 11th, 2012 at 3:40pm

LasVegas wrote on Jan 11th, 2012 at 2:15pm:
Magnesium Citrate is what is recommended for this vitamin regimen.

...recommended, but is the mag oxide ok?

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Jan 11th, 2012 at 3:42pm

Chad wrote on Jan 11th, 2012 at 3:40pm:

LasVegas wrote on Jan 11th, 2012 at 2:15pm:
Magnesium Citrate is what is recommended for this vitamin regimen.

...recommended, but is the mag oxide ok?


Don't know, Batch and Niels would be the two to ask as they created this vitamin regimen.  Might want to PM them with your inquiry for fast reply ;)

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 11th, 2012 at 5:25pm

Chad wrote on Jan 11th, 2012 at 3:38pm:
Playdoh,  I need to research my diet more.  I eat the same thing almost daily.
I start with whole wheat peanut butter toast for breakfast, then a banana for snack.  Salad or tuna sandwich for lunch, yogurt for snack, balance meal for dinner.  I refrain from milk and eggs due to my cholesterol. So, I need to see how much calcium is in these foods as I'm a nutritional idiot, lol!  I'm increasing my calcim citrate today to 1000mg.  I already took 500 and looking to take another 500 at bed time.



That's pretty healthy compared to mine, yet I have no idea how much calcium is in any of those either.

I too avoid milk, yet I suppose I should try a glass here and there. I have a 15 month old daughter so there's plenty of the white stuff around. lol

I read something interesting lately, that Dr's entire education on diet is a one course, like a 3 hour lesson. And that most of the info is generated by the Dairy and Meat producers.

Not sure about the last part, but its sad to think that Dr's are trained nearly completely to use the Prescription pad. Although that might not be fair to say, since one could argue that Dieticians are a Dr's only necessary tool regarding diet issues.

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 11th, 2012 at 8:45pm
I wish 2-3 months was a long cycle for me :-/

I'm like 6-7 months.

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Jan 11th, 2012 at 10:51pm

Cosworth wrote on Jan 11th, 2012 at 2:12pm:
I saw someone post earlier (and now i can't find it) about what type of Magnesium to take. I'm taking Magnesium Oxide. I think the poster said don't take this type and instead take Magnesium Citrate?   Can anyone answer this one? Is Magnesium Oxide bad?   


Magnesium Oxide is not bad, but it is considered to have very low "bio-availability".  Only 4-6% is absorbed.  I avoid it. Magnesium  chloride, lactade, citrate, sulfate, malate, glycinate are all considered to be better.  Generally also more expensive.

Getting Mg from food is best, I suppose.  See Table 1 from extensive list of  good Mg sources:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 12th, 2012 at 9:44am
ShazBot!  It sounds like we're approaching agreement... However, I think it's wise to review the bidding and rationale for the dosing strategies used in the anti-inflammatory regimen of vitamin and mineral supplements.

Just in case some of the comments have thrown a head & shoulder fake to readers coming late to this discussion... the Basic and Complete Anti-inflammatory Regimen Treatment Protocol and Dosing Guide is located at the following link:

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Let me start by saying the basic anti-inflammatory regimen amounts to a conservatively stacked deck as a CH preventative with respect to the supplement doses and their ratios.  With the exception of the vitamin D3, the remaining supplements are at or below their respective Recommended Dietary Allowances (RDA).   

I arrived at the composition of the present basic regimen after consulting with with experts in nutrition, endocrinology, and integrative medicine.  As we gather more information, I expect there will be room for fine tuning the amounts and ratios of these supplements.  The beauty of a forum like this is that there's room for differing opinions on this regimen... like taking more calcium or not taking any at all.  What's even more important, is the rationale behind these opinions, and are the results repeatable.

That said, when we contrast the efficacy of this regimen with the leading standards of care preventative, verapamil,  the present regimen is doing just fine.  That 70% of the 100 + CH'ers who started this regimen have a significant reduction in the frequency and severity of their CH, and that 66% of them are pain free and remain that way trumps verapamil with at best 50% efficacy per the results of the Cluster Headache Survey 1134 of us took.

So let's review the present regimen.  The suggested dose for vitamin D3 is 10,000 IU/day. This is a very safe therapeutic dose.  That amount may be a little high for a maintenance dose for some CH'ers while others may require an even higher dose to stay pain free... and that suggests an even higher therapeutic dose...  If you look at the following graph of 25(OH)D response to vitamin D3 dose, you'll see what I mean.  It doesn't take too much imagination to draw another curve for a dose of 15,000 or 20,000 IU/day vitamin D3 to see that the initial rise in the slope of 25(OH)D concentration is steeper and that it arrives in the green zone at 60 ng/mL in much less time.

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I've overlaid lab test results for 25(OH)D from several CH'ers before and after going pain free using the anti-inflammatory regimen.  What this graph tells us follows:  For a given daily intake of vitamin D3, we reach a corresponding serum level of 25(OH)D, that it reaches equilibrium and stabilizes at a steady state value after 5 to 6 months.  What it also tells us is the higher the daily intake of vitamin D3, the rise in 25(OH)D is faster, it reaches the green zone in fewer days, and the resulting stable serum level of 25(OH)D is higher after 5 to 6 months.

The important thing to remember about supplementing with vitamin D3 is that without a lab test for 25(OH)D, it's principal metabolite, our only measure of merit is the dose related response as evidenced by a favorable change in CH pattern, i.e., reduction in frequency and severity of CH with the goal of going completely pain free and staying that way. 

The second point is to correlate lab test results of 25(OH)D concentrations to a change in CH pattern that's keeping the beast away if the level is high enough. 

From the data I've collected thanks to many of you who've had this lab test and posted the results, the target therapeutic range to stay pain free appears to be 60-90 ng/mL (150-225 nmol/L) for most of us...  Some may require an even higher concentration upwards of 120 ng/mL, (300 nmol/L) and some may require slightly less.  This is the data I used to generate the green color band in the chart above.

What we do know at this point is there are CH'ers who's 25(OH)D concentration was 42 ng/mL and they were still experiencing frequent CH.  I used this data to anchor the upper boundary of the pink color band in the above graph.  I'd also like to point out that as more CH'ers try this regimen and have the lab test for 25(OH)D, these color bands will take on better resolution.

The real question now is what is the best dosing strategy to elevate our 26(OH)D concentration into the pain free green zone as safely and rapidly as possible without upsetting the apple cart by taking too much of one or another of the supplements and disturbing their balance. 

The following graph from the most recent study by Garland et al, on vitamin D3 dosing and 25(OH)D response measured every six months as collected by the GrassRootsHealth D*Action study, paints an interesting picture:

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I've drawn a line from 60 ng/mL 25(OH)D concentration to the lower 95% probability boundary and from there down to the daily dose required to reach that concentration.  From this you can see that in order to ensure the probability that 95% of the dosing population reaches a serum level of 60 ng/mL, they would need to dose at 20,000 IU/day.

Clearly calcium and the vitamin D3 cofactor minerals magnesium, zinc and boron play a role in optimum metabolism of vitamin D3 into 25(OH)D, and from the recent posts, the amount of calcium supplements and the cal-mag ratio also appears to be an important factor.

We also know from the results of several published studies on serum level 25(OH)D response to vitamin D3, that a therapeutic dose of 10,000 IU/day is safe and not likely to result in vitamin D3 intoxication associated with 25(OH)D levels of 200-300 ng/mL with hypercalcemia and hypercalciuria. 

In fact, there are other studies that have shown that starting and 20 week serum levels of calcium were unchanged when taking vitamin D3 at 10,000 IU/day.  The most recent study of the 25(OH)D response to vitamin D3 doses as high as 40,000 IU/day concluded that a long term sustained daily intake this high is also safe and unlikely to result in vitamin D3 intoxication.

At face value, that leaves us with a safe therapeutic vitamin D3 dosing range of 10,000 to 40,000 IU/day.  However like so many other systems in nature, the law of unintended consequence comes into play when we upset the balance of these systems by increasing the quantity of one of the reactants in that process.  For example, increasing the daily intake of vitamin D3 also drives more calcium into solution from all sources and if the extra calcium isn't available in the gut, this process takes it from our bones. 

Calcium homeostasis, the processes by with the body maintains serum calcium levels in a narrow range of 2.2 to 2.6 mmol/L is much like other homeostatic processes in the body.   These include the homeostatic processes that maintain our body temperature at 98.6º F, our arterial pH in a range between 7.35 and 7.45, and blood glucose levels between 64.8 and 104.4 mg/dL.

Accordingly, as calcium homeostasis can and will extract calcium from the bones in order to maintain optimum serum calcium levels if insufficient calcium is available in the gut from dietary sources, it's prudent to supplement with calcium when supplementing with vitamin D3.  (See following link for a paper on calcium homeostasis, PTH and Calcitonin.)

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That begs the questions, How much calcium? and If I add calcium, how much magnesium should I take to maintain adequate vitamin D3 metabolism to make the 25(OH)D needed to remain pain free?

I'm not a doctor or a nutrition expert.  However, in reviewing available information on this topic and talking with some experts, there are several recommendations for calcium supplements that range from 500 to 1000 mg/day.  From what we've learned about the anti-inflammatory regimen, calcium citrate is the preferred form of calcium supplement to take and 500 mg/day appears to be adequate.

Magnesium supplements and the cal-mag ratio are another story.  Suggested cal-mag ratios range from 2:1, 1:1 and 1:2.  Moreover, there's no clear consensus.  If you're taking two of the Kirkland brand of calcium citrate tablets, you're getting 500 mg/day calcium and 60 mg/day magnesium.  (You're also getting the required zinc and boron).  That may not be enough magnesium for some of us which gets us back to the question of how much more magnesium should we add?

The RDA for magnesium is 420 mg/day for men and 320 mg/day for women, and as magnesium is readily available in green leafy vegetables, whole grains, nuts, meat, starches, and milk, without a lab test, it's difficult to tell.  From my experience, 200 mg of additional magnesium is fine but 400 mg starts getting iffy...

In reality, the answer here is easy... Your bowels will tell you when you've taken too much supplemental magnesium...  In other words, it's like rolling the dice in a crap shoot... and that analogy is spot on... Take the right amount, you win, and everything works better.  Take too much and you crap out...  In other words, you'll find yourself taking small steps with great trepidation towards the dumper...  [smiley=moonwiggle.gif]

The reason for this behavior is simple...  You'll get loose as a goose with explosive watery stool if you take too much magnesium.  [smiley=JAW_DROP.gif] 

That reminds me of Uncle Miltie... the comedian and actor Milton Berle, who joked about a commercial for the BVD brand of underware by saying... "At my age...  I've done everything in my BVDs..." with a big smile...

I'll close on that note of bathroom humor... but I will make another request of the CH'ers who've tried this regimen, to take the Anti-Inflammatory Survey if they haven't already done so...  We need this information and there are at least another 70 of you out there who haven't taken this survey.

Take care,

V/R, Batch



Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 12th, 2012 at 4:50pm
Awesome, as usual post Batch. I know your not a Dr, or headache specialist, but you could've fooled me. I dub thee "CH Guru". lol

To be clear on my posts regarding Calcium, I'm only explaining what I've been taking and the results I've inferred form the short month I've been taking the regime.

In no way, shape or form do I intend to offer an alternative, or contradict Batch's advice, and suggestions.

My suggestion on taking 1200 mg of Calcium is to those who don't find relief or complete relief from the Standard dosages after a fair amount of time. And from what I've read "19 - 50 years: 1,000 mg/day" is recommended and "2,000 - 2,500 mg a day appears to be safe for adults."
via
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Its not wise to take anything, including Calcium, in excess of what is 'needed'. Use your discretion and calculate what your usual diet provides, and supplement, or do not supplement accordingly.

I say all this in attempt to not confuse or appear to persuade anyone to just take 1200 cause it simply "seems" to be effective for myself.

Title: Re: 123 Days PF And I Think I know Why
Post by MemyselfandI on Jan 12th, 2012 at 9:17pm
Thank you Batch for posting the chart.  I had been looking everywhere to find that information. 
After a few pf days the beast has returned for the last few nights.  It is still fairly mild compared to how he usually was but just enough to force you to wake up and abort. 
Just over a week ago I had my 25(OH) D level tested and it was 23.6 ng/ml.   I'm estimating that it's probably sitting 27 ng/ml area now.  I still have a quite a way to go to get out of the active CH area.  I increased the Vit D level yesterday to 15000 iu/day to try and speed up the process.  If I increase even more to 20 000 iu/day should I add extra calcium and magnesium?
It is interesting to note that when I was pf I was healthy but this past weekend came down with a bad cold.  I wonder if increased mouth breathing has effected my PH level bringing the beast back....

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 13th, 2012 at 6:26am
MM&I,

Good question...  Upping the daily dose of vitamin D3 to 15,000 or 20,000 IU/day should get you into the green zone and hopefully pain free a little faster.  However, I don't think there's any need to increase the supplemental calcium intake above 500 mg/day at 15,000 IU/day vitamin D3 unless your diet is low in dairy products and food types high in calcium.   My wife and I take 15,000 IU/day vitamin D3 and 500 mg/day calcium is working just fine for both of us.

That said, when you reach 20,000 IU/day vitamin D3, it's likely a prudent move to bump the calcium supplements up to 750 mg/day and magnesium supplements up to 200 mg/day over the 90 mg. of magnesium you get from the calcium citrate tablets if you use the Kirkland brand or a similar formulation from Citracal.

What we're guarding against here with the extra calcium is the loss of bone mass.  Unfortunately, this is a relatively slow process and there's no good way of determining the impact of higher doses of vitamin D3 on bone mass without an ultrasonic bone density scan to determine a baseline and subsequent scans to see if there's any change.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Jan 13th, 2012 at 11:12am
I just got the results from the latest blood test.  Vit. D (25-OH) is now at 212 nmol/L. 

I eat 5.000 and 10.000 IU every other day, and have done so since oct.1. From jul 1. to oct 1, it was 10.000 IU a day.

aug 24: 225 nmol/L
sep 28: 295  nmol/L
dec 05: 271 nmol/L
jan 05: 212 nmol/L  and for the first time my CA values are beyond normal range at 2,59 mmol/L - maybe because I've begun drinking milk again. I actually take only 166 mg CA. I have no explanation for the sharp decline in Vit D. levels   -20% in one month. But all December I've been sick with shingles. That may be the explanation.

I have been 100% PF since mid October and almost instantly 94% PF from July.

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 13th, 2012 at 1:23pm
Well unfortunately I seem to be getting worse. Days are okay but have gotten 4 HA a night the last few nights. I'm taking 20,000 IU D3, 500 mg Calcium Citrate w/ the mag, zinc and D3 daily.  Going for the 25 (OH) d test this morning and going to get a script for O2. Going to give that a go again. The last time I tried it (4 years ago), I did it wrong as I found out from Gregg. On the other hand I'm quite used to things not working  and just dealing with it so no surprise. I'll keep up with the vitamins anyways at least until I get the test results.......

The shitty part about this cycle is as an episodic for the last 30+ years is I just got over a 6 month right side cycle about 6 weeks ago only to go into a left side cycle 3 weeks later. Still hopeful though.

Rick  ;)

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Jan 13th, 2012 at 3:36pm

RTD wrote on Jan 13th, 2012 at 1:23pm:
Well unfortunately I seem to be getting worse. Days are okay but have gotten 4 HA a night the last few nights. I'm taking 20,000 IU D3, 500 mg Calcium Citrate w/ the mag, zinc and D3 daily.  Going for the 25 (OH) d test this morning and going to get a script for O2. Going to give that a go again. The last time I tried it (4 years ago), I did it wrong as I found out from Gregg. On the other hand I'm quite used to things not working  and just dealing with it so no surprise. I'll keep up with the vitamins anyways at least until I get the test results.......

The shitty part about this cycle is as an episodic for the last 30+ years is I just got over a 6 month right side cycle about 6 weeks ago only to go into a left side cycle 3 weeks later. Still hopeful though.

Rick  ;)


Rick,
Remain strong and let me know if you need anything locally.
-Gregg

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 13th, 2012 at 4:07pm
Hey Rick,

Sorry you're still having night hits...  Good move on having your 25(OH)D concentration tested...  That's the beauty of this regimen.  You can actually measure your progress with the results of this test. 

Starting back on oxygen therapy is also a good move.  Gregg has the breathing techniques down pat so you'll likely have much better results aborting your CH at higher oxygen flow rates that support hyperventilation.

Try taking at least half the vitamin D3 in the evenings before bed.  I'm beginning to think the serum concentration of cholecalciferol (vitamin D3) may be playing a role in preventing CH before the liver and kidneys metabolize it into 25(OH)D.  Adding another tablet of the calcium citrate might help as well.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 13th, 2012 at 5:15pm
Hey Rune,

Sorry about the shingles...  another of life's more unpleasant maladies...  Joyce got hit with them in 2005 and it traveled down the nerves in her pitching arm...  She was a starting pitcher on her Congressional League Slow Pitch team for many years in the Washington DC area so had an excellent throwing arm...

After the shingles she picked up a wicked hitch in her delivery.  We now call her "Wild Thing."  No telling where the ball will go but it gets there with a lot of heat...

There may be a link between the drop in 25(OH)D and spike in total calcium...  Calcium homeostasis is normally very good at maintaining total serum calcium in a narrow range of 2.1 - 2.2 2.6 mmol/L so something is out of balance...  Did your labs include a test for Parathyroid Hormone (PTH) or magnesium levels? 

Take care and please keep us posted.

V/R, Batch



Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Jan 14th, 2012 at 6:45am
Hi Batch. 
Sorry about Joyce. Shingles are truly a bizarre illness. And I have of course wondered if it somehow is related to CH, but not found any link :-)

As a matter of fact I've measured both Mg and S-PTH. Mg is steady at  0.9 mmol/L. PTH more varied:

sep 28: 2,0  pmol/L
oct 27: 2,4 pmol/L
dec 05: 2,1 pmol/L
jan 05: 1,9 pmol/L

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 14th, 2012 at 9:43am
Last night was better, only 2 HA. Over the years my CH have  changed but the last few years, one thing has remained constant. I seem to get hit shortly after I eat and during the digestion process. So I only eat in the evening so I can deal with work stuff during the day. Like if I eat at 6:00 I'll get hit several times between 8:00 and 2:00. Like a 6 hour window depending when I eat. If I don't eat I either won't get hit or if I do, just one very mild hit. Anyone else relate to that or is it just me?

Anyhow went for my 25(OH)D test yesterday. Should have results sometime next week. And of course it was a fiasco explaining the O2 thing to my doc and doubt the insurance will cover, which is fine I'll just pay for it. It is a strange thing to be explaining to a doctor the proper treatment for something though.

Rick

Title: Re: 123 Days PF And I Think I know Why
Post by Guiseppi on Jan 14th, 2012 at 11:48am
It is a strange thing to be explaining to a doctor the proper treatment for something though.

Good on you for taking the initiative and being your own advocate. We say it a lot, but it bears repeating. Sitting in front of your doc and saying "fix me" with CH, is a sure fire recipe for a LOT of pain.

Joe

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 14th, 2012 at 4:54pm

Zeitgeist wrote on Jan 13th, 2012 at 11:12am:
aug 24: 225 nmol/L
sep 28: 295  nmol/L
dec 05: 271 nmol/L
jan 05: 212 nmol/L  and for the first time my CA values are beyond normal range at 2,59 mmol/L - maybe because I've begun drinking milk again. I actually take only 166 mg CA. I have no explanation for the sharp decline in Vit D. levels   -20% in one month. But all December I've been sick with shingles. That may be the explanation.

Sorry about the Shingles, my Mom had them in her eye and nearly went blind.

I wonder if sun exposure might explain your lower Vit D levels? Yet the Aug to Sept increase wouldn't jive with that assumption unless your levels were still increasing until they 'leveled off' between Aug & Sept.

Its very interesting so see fluctuations like that, and thanks for sharing. Kudos for getting tested so often.

Dairy and drinking milk seems to be the best way to get Calcium, 8-ounce glass of milk = 300 mg of calcium, so no surprise on the Calcium levels. I'd guess (without knowing your diet at all) that your getting 600-1200 mg of Calcium. Nice to see the translation to blood levels.

How much dairy to you consume in a day, if you don't mind me asking?

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 15th, 2012 at 7:11am
Hey Rune,

I want to thank you again for making your lab data available. It's very exciting to see the actual lab results of the anti-inflammatory regimen with vitamin D3 over time... More so knowing you're also PF...

I've sent you a paper on calcium homeostasis and a study by Dr. Robert Heaney, M.D.  I've pasted an excerpt from that study below.  Dr. Heaney is one of the Grand Masters of vitamin D3 therapy and research.  The findings below come from his 2003 study of four vitamin D3 dosage groups:  Group 1 taking no vitamin D3; Group 2 taking 1000 IU/day; Group 3 taking 5000 IU/day; and Group 4 taking 10,000 IU/day:

"Serum PTH rose by 6% during the winter in the zero-dosage group (from a beginning value of 32 pg/mL; P = 0.05), was unchanged in the intermediate-dosage groups, and fell by 24% in the highest-dosage group (from 29.5 pg/mL; P < 0.001). Across all groups, the change in PTH was inversely correlated with the actual cholecalciferol dose (P < 0.01). Serum calcium was measured at each visit in the 2 higher-dosage groups, but it did not change significantly from baseline (x–: 9.6 mg/dL) at any time point at either dose. The first and last serum calcium values for the 31 participants in the higher-dosage groups are shown in Figure 4. No value rose above the upper limit of normal, and, as is visually evident, treatment did not increase the dispersion of serum calcium values."


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Date    Vitamin D3    25(OH)D        PTH             Ca               Mg
Aug 24  10K  IU/d   225 nmol/L      
Sep 28  10K  IU/d   295 nmol/L  2.0 pmol/L    Normal        0.9 mmol/L
Oct 27  7.5K IU/d                      2.4 pmol/L    Normal        0.9 mmol/L
Dec 05  7.5K IU/d   271 nmol/L  2.1 pmol/L    Normal        0.9 mmol/L
Jan 05  7.5K IU/d    212 nmol/L  1.9 pmol/L  2.59 mmol/L  0.9 mmol/L

If I've captured the data accurately from your posts... I'd say your labs summarized in the table above, appear normal and consistent with your vitamin D3 intake and the resulting serum calcium levels.

The normal reference range for PTH is 1.1 - 7.5 pmol/L.  As your PTH levels are in the lower end of this range and PTH elevates to raise serum calcium via bone resorption and renal calcium reabsorption, it's likely the lower PTH levels reflect the higher serum calcium level as less of the PTH is needed.  The last total serum calcium listed as "High" at 2.59 mmol/L is still within the normal reference range of 2.1 to 2.6 mmol/L from available texts and Figure 4 above.  I had a typo in my previous post on the normal range of serum calcium concentration.

The drop in serum 25(OH)D appears to be consistent with the lower daily dose of vitamin D3 that you started after 1 Oct, and the gradual depletion of 25(OH)D reserves built up during the first three months at the higher vitamin D3 dose of 10,600 IU/day.  The accelerated drop in 25(OH)D indicated in your last labs could easily be due to an increased depletion of 25(OH)D reserves associated with a reduction in endrogenous vitamin D3 produced by the skin due to the absence of UVB exposure from lower angle sunlight there in Norway during the Winter months. 

I expect your serum 25(OH)D concentration will continue to drop until it reaches an equilibrium consistent with an average vitamin D3 dose of 7,500 IU/day.  Based on the vitamin D3 study results published by Dr. Heaney shown below and interpolating between a dose of 5,000 IU/day and 10,000 IU/day with the dark dashed line, I estimate that your 25(OH)D concentration will reach equilibrium and stabilize around 180 nmol/L ± 10 if you continue at an average vitamin D3 dose of 7,500 IU/day.

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This is exactly the kind of information we hope to collect in a formal study of this regimen's capacity to prevent CH compared with the prevailing standards of care preventative treatments shown in the following table.

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Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Jan 15th, 2012 at 7:51am

PlayDoh wrote on Jan 14th, 2012 at 4:54pm:

How much dairy to you consume in a day, if you don't mind me asking?


I estimate 16 ounces a day.  Except for milk, only butter.


Batch!  Fascinating - thanks!  You've got the numbers right. I will continue with the same amounts and take a new test in a month or so.

Title: Re: 123 Days PF And I Think I know Why
Post by JackBurton on Jan 15th, 2012 at 3:56pm
Hi!

I was diagnosed with CH in the ER 2 weeks ago, then saw my PCP 6 days ago and was set up with O2, prescribed 180 mg verapamil to start and a 15 day prednisone tape starting at 50 mg. The next day I started researching cluster headaches, found this forum. I found this thread very interesting and took lots of notes and started the anti-inflammatory regimen to the best of my ability about 5 days ago. I have supplements from various previous experiments to feel better, so they're not exactly has been suggested but I am okay with using them for now to save money.

Okay, long intro done, now to my question. Am I doing this right? I am taking:

Barleans Fish Oil Omega-3 1000 mg each; 2-3 a day with meals

Kirkland Vitamin D3 2000 IU; 2 with 2 meals a day, 1 at bedtime = 10,000 IU

Womens One a Day multivitamin which has:
1000 IU vitamin D3
25 mcg vitamin K
50 mg magnesium
15 mg zinc
500 mg calcium (elemental)
So that brings my D3 total up to 11,000 IU a day

I have a calcium-magnesium supplement but it's calcium carbonate with magnesium oxide, so absorption seems to be an issue. Plus with the verapamil its driving me crazy to figure out the best time to take it. Instead right now I am skipping it (the cal/mag supplement, not the verapamil) and using a magnesium supplement to see if I can approximate a 2:1  cal/mag ratio with the calcium in the multivitamin. Magnesium citrate 200 mg once a day, which is 500 mg calcium to 250 mg magnesium. I don't know if that is enough?

I also take a b complex vitamin for general health and energy, and have started taking 6 mg melatonin at night.

Thanks.


Title: Re: 123 Days PF And I Think I know Why
Post by IndianaJohn on Jan 15th, 2012 at 4:50pm
I usually take the vitamins in the morning with a glass of OJ and then I take my verapamil at dinner.  The timing of the verapamil seems to be working for me as my night hits are being controlled fairly well.

Batch will probably weigh in on your formulations, but your magnesium seems low.  I take 400 mg/day.  I also take up to 15 mg melatonin a night.

Hope your getting some PF time.

John

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Jan 15th, 2012 at 5:47pm
FYI to the newbies on this regimen...Calcium citrate alone on an empty stomach has been known to cause nausea.  Take the vitamins with food! ;)

-Gregg in Las Vegas

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 16th, 2012 at 3:17am
Zeitgeist - Thank you for your answer.

JackBurton - I would highly recommend you grab some Calcium Citrate. I take Calcium Citrate with D3 300mg/200 IU. All the vitamins I take cost me roughly about $30 a month (Canadian), yet I'd pay ten times that no problem.

FWIW. I take all 1200 mg of Calcium Citrate with D3 in the morning or early afternoon, almost always on an empty stomach and have never had nausea.

I take all vitamins / supplements in the Morning or early afternoon all at the same time, with juice or water. No nausea or stomach issues at all. I was worried at first after reading this thread, since it seemed to be an issue with people. I now think that its more the exception, yet I'm just guessing there.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 16th, 2012 at 4:55am

JackBurton wrote on Jan 15th, 2012 at 3:56pm:
Okay, long intro done, now to my question. Am I doing this right? I am taking:

Barleans Fish Oil Omega-3 1000 mg each; 2-3 a day with meals

Kirkland Vitamin D3 2000 IU; 2 with 2 meals a day, 1 at bedtime = 10,000 IU

Womens One a Day multivitamin which has:
1000 IU vitamin D3
25 mcg vitamin K
50 mg magnesium
15 mg zinc
500 mg calcium (elemental)
So that brings my D3 total up to 11,000 IU a day

I have a calcium-magnesium supplement but it's calcium carbonate with magnesium oxide, so absorption seems to be an issue. Plus with the verapamil its driving me crazy to figure out the best time to take it. Instead right now I am skipping it (the cal/mag supplement, not the verapamil) and using a magnesium supplement to see if I can approximate a 2:1  cal/mag ratio with the calcium in the multivitamin. Magnesium citrate 200 mg once a day, which is 500 mg calcium to 250 mg magnesium. I don't know if that is enough?


Hey JB,

You're doing just fine and you've got all the supplements down pat...  Everything should be looking good in no time!

As Old Jack would say:

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    "What the Hell...  It's all in the reflexes..."

Not too many gals dig John Carpenter flicks... or is there a connection we can't see?

In any event, with all the goodies you've got to keep the beast away...  something is bound to work and this should be a cake walk near the Great lake.

Take care and keep us posted.

V/R, Batch


Title: Re: 123 Days PF And I Think I know Why
Post by JackBurton on Jan 16th, 2012 at 1:50pm
Wait, are you saying there are people out there who don't like John Carpenter films?  :o

Big Trouble in Little China is one favorite movies. I am a total and cheerful dork. Maybe a geek?  Well, up until my head decided to start plotting to drive me miserable and in agonizing pain. I want to get back to baseline so I can geek it up again.


Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 16th, 2012 at 3:49pm
Hmmm...  Geek... a total and cheerful dork... likes John Carpenter flicks including Big Trouble in Little China... lives by a Great Lake...  What's not to like about that?  You're my kind of CH'er...  :)

Now we gotta get you in control of the beast so there are no more "dark and stormy nights when the lighting's crashing and the thunder's roaring and the rain's coming down in sheets thick as lead"

Besides that...  none of us want a big ol' hairy scary beast climbing around the backside of our sleeper cab... when the earth shakes and the poison arrows fall from the sky and the pillars of heaven shake...

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[smiley=yikes.gif]

Even if we can take it...

Hang in there JB...  and please keep us posted.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Cosworth on Jan 18th, 2012 at 10:55am
Without going back through this entire thread, can anyone comment on incidence of nausea being reported?  I've been doing the regimen for about four weeks now and over the last week or so i'm finding that i'm nauseos a LOT.  I take 10,000 iu's of D3, 650 mg. Calcium citrate, 400 mg. magnesium citrate, multivitamin, 2 fish oil capsules which provide 1200 mg.  I typically take another dose of fish oil, plus vitamin C before bed, but i've stopped doing that because my stomach's been so torn up.  I'm really bummed. Shadows are increasing, and i'm not sure if the regimen is what's making me feel so lousy.

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 18th, 2012 at 2:55pm
It doesn't seem like nausea is that prevalent, yet perhaps most people take the regime with food, which should help with stomach upset / nausea.

Do you take your with food? If not, try that.

I'm still not 100% clear on everything, yet perhaps your 'fish oil' isn't ideal. Does it give you a DHA and EPA count? Its kinda like vitamin D, which from what I've learned is the same as D3. unless I'm mistaken. Yet when you look at the vitamin shelf there are Vitamin D bottles beside D3 bottles.

Also there's half a dozen different Omega 3 / fish oil bottles that probably all have the same thing inside them.

I would suspect the Fish oil would be the cause of Nausea, so try to take those with food, and I don't think you need 4 pills worth. I'd try switching brands and get a Omega 3 'select' so you don't need as much 'oil' to get the desired ingredients (DHA and EPA).

My 3 pills of Omega 3 'select' provide 900 mg EPA (300 each) and 600 mg of DHA (200 each), with 1500 mg Omega 3 fatty acids (500 each) (derived from 1000 mg of pure molecularly distilled sardine and anchovy oil). Their "Jamison" brand.

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Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 18th, 2012 at 4:11pm
So Batch, I got my 25(OH)D test results back and they came in at 58 nmol/L. Curious what to think. While I have had some good days in the last week, yesterday was one of the worst. I had the worst HA I've had in the last 3 years. In your opinion where am I at with a result of 58? Should it be higher? Should I keep going?

Oh a side note my new buddy Gregg helped me out with getting the O2 and I should have my new mask tomorrow (man I could have used it yesterday) so I should be good to try to fight back. 


Thanks in advance
Rick

Title: Re: 123 Days PF And I Think I know Why
Post by CC_stole_my_Harte on Jan 18th, 2012 at 4:15pm
I'm only to page 6 on this thread but I just had to post because I'm so excited! I went out just now and got all the supplies. I also got some redbull for hubby to drink before o2 (we are new to o2 and I aborts but does not "stick." they come back). I am currently drinkIng one of the redbull myself because I've Been unable to sleep since his remission ended and life is kind of a drag for both of us right now...

So he had his first HA in 3.5 years on Saturday. Before remission he had them from age 6 till age 28. Always episodic and following the same 1 mo on/ 3 mo off schedule. No hit Sunday night. Then got hit Monday night @ a 7+. Tuesday he tried to nap on a break at 9 am and 30 min later got an attack. So I ran out and spent $330 rigging up some welders o2 for him. Another hit started Tuesday afternoon, stopped by the o2.

Last night he had to attempt aborting with o2 THREE times before it went away. And then twice again today. The beast doesn't like to be pushed back, he just throws a temper tantrum later >:(

As soon as he gets back from his testosterone shot I will give him all these supps!

I'm really hoping for a quick reaction time. He has been working his ASS off preparing for a CrossFit competition this weekend that he could place well in. The HA could ruin all his hard work :(

I'll chime in tomorrow!

Title: Re: 123 Days PF And I Think I know Why
Post by MemyselfandI on Jan 18th, 2012 at 5:47pm
RTD,
You are in the same situation I am in.  At the start of January I tested at 58nmol/l.  Unfortunately we have to build up to a vit d level of 150 nmol/l to be at the low end of where most people are going pf.  Hopefully you've been able to see some reduction in intensity of the beast as your 25(oh) d levels are slowly increasing. 
I'm still getting hit daily.  Usually they are mild but on occasion the beast will come back with a larger bite.

Hang in there, you'll get there soon :)

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 18th, 2012 at 5:48pm
RDT, that's low. I think its 23.2 ng/ml. Ideally you want 90 ng/ml, if I'm not mistaken, so I'd say your very low.

CC_stole_my_Harte, I would tell him to avoid 'naps' they always bring on a CH for me and many others. I know we all need sleep, but if possible try to avoid it.

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 18th, 2012 at 5:59pm

MemyselfandI wrote on Jan 18th, 2012 at 5:47pm:
RTD,
You are in the same situation I am in.  At the start of January I tested at 58nmol/l.  Unfortunately we have to build up to a vit d level of 150 nmol/l to be at the low end of where most people are going pf.  Hopefully you've been able to see some reduction in intensity of the beast as your 25(oh) d levels are slowly increasing. 
I'm still getting hit daily.  Usually they are mild but on occasion the beast will come back with a larger bite.

Hang in there, you'll get there soon :)




That's interesting cause my doc called and said my level is normal at 58 But i thought I saw somewhere on this thread a level between 60-90 is what were shooting for..... I had had a few days of milder hits until yesterday and then BOOM K10. I'm going to keep at it but highly considering Verapimil again.

Rick 

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 18th, 2012 at 6:01pm

PlayDoh wrote on Jan 18th, 2012 at 5:48pm:
RDT, that's low. I think its 23.2 ng/ml. Ideally you want 90 ng/ml, if I'm not mistaken, so I'd say your very low.

CC_stole_my_Harte, I would tell him to avoid 'naps' they always bring on a CH for me and many others. I know we all need sleep, but if possible try to avoid it.




Yep no naps!!! And that sucks because I love naps >:(

Title: Re: 123 Days PF And I Think I know Why
Post by CC_stole_my_Harte on Jan 18th, 2012 at 7:31pm
I don't think he had an issue with naps before, but it seems to be an issue now.  Definitely avoiding for now.  "Anxiously" awaiting tonight to see if the D3, combined with redbull before 02 will help him get some blessed sleep tonight.  Course I probably still won't be getting any :-/  Anytime he so much as twitches I am wide awake.

Title: Re: 123 Days PF And I Think I know Why
Post by MemyselfandI on Jan 18th, 2012 at 8:47pm

RTD wrote on Jan 18th, 2012 at 5:59pm:
That's interesting cause my doc called and said my level is normal at 58 But i thought I saw somewhere on this thread a level between 60-90 is what were shooting for..... I had had a few days of milder hits until yesterday and then BOOM K10. I'm going to keep at it but highly considering Verapimil again.

Rick 

My pcp had wanted me to take 1000 iu of vit d to get my level up to 80 nmol/L.  She considered that good.  Still well below what people are finding is necessary.  According to Batch's chart it will take approximately 40 days, at 10000 iu vit d/day, to reach the 150 nmol/L. 
I'm curious why your doc had given the 25(oh)D level in nmol/L.  I see that you're in America where typically the vit d level is expressed in ng/ml.  The rest of the world typically uses nmol/L. 

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Jan 19th, 2012 at 1:09am
Rick,
Could it have been the buffet lunch?  Hope not, cuz i'm game for Friday if you got time!?

On the Marshall Protocol study site, 25-D levels are typically discussed using ng/ml units rather than pmol/L. The ratio between the two units is: 2.4 ng/ml = 1 nmol/L. To convert nmol/L into ng/ml, multiply by 0.40, as you see in this example based on RTD's test result:

58 nmol/L * .40 = 23.2 ng/mL

My D test result was 103.0 ng/mL and flagged as HIGH.  My lab report stated "recent studies consider the lower limit of 32.0 mg/mL to be a threshold for optimal health."

This vitamin regimen is not 100% effective, despite it working for many.  Personally, I would not wait/gamble on this to be your #1 preventive and go with the Verapamil.

Hope tonight is PF for you.  Did the o2 mask arrive yet?
Talk tomorrow.
-Gregg

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 19th, 2012 at 8:17am
Gregg,

1:09 am? Dam you stay up late. Yeah its my bad on the nmol/L   ng/mL Thing. My doc called me with the results so I'm sure it was ng/mL. It was his office girl who initially called and just said my levels were fine. I had to ask her for the number, so I'm sure it was the ng/mL range.... Didn't get the mask yet, hopefully today.

Friday sounds good, I just have to be more careful of what I eat. I should have known better. Besides I finally got the building permit for that job so I will be out of town a lot over the next month so I'd like to get together before this weekend. It does my brain good to talk to someone who knows what we deal with.  ;)

I'll call you later this morning
RTD

Title: Re: 123 Days PF And I Think I know Why
Post by Dorothy on Jan 19th, 2012 at 11:41am
Hi folks!

I just started taking these supplements last week in the hope that I might not even go into cycle.  OMG they are huge capsules to swallow!  Well if I don't choke to death in the meantime I'll let you know whether I eventually do go into cycle or not.... :P

Dorothy

Title: Re: 123 Days PF And I Think I know Why
Post by Zeitgeist on Jan 19th, 2012 at 12:50pm
This regimen is more than vitamin D. I don't know what my levels were back in late June when I begun following the regime, having to eat 18 pills á 400 I.U (max allowed in Norway).  But I know where I came from, May and June being particularly evil, and the last 12 months my first encounter with the chronic version of CH.

However - my point is: The effect of the regimen was instant and I was PF the third night.  One may wonder why, because building up the optimal levels of Vit D serum takes time. That's why I sometimes get the feeling that  Ca and Mg don't get the credit the probably deserve, especially Mg.  I actually broke out of a vicious cycle and a cycle of cycles (chronic CH) in a matter of days. That's close to busting if you ask me.

Another important point:  Split Mg in one morning and one evening dose, and always eat Vit D with food, preferably with fat.

Title: Re: 123 Days PF And I Think I know Why
Post by LasVegas on Jan 19th, 2012 at 12:51pm
Rick,
Go to your profile settings and reset your clock.  I wrote that at 10:09pm, your profile must be set for EST, adjust it to PST for accuracy.

Speaking of time, don't you think you've given this vitamin regimen enough chance and it's time to start the Verapamil?  You don't have to stop it completely as there are addtl health benefits besides CH's. 

What if you're like me and this vitamin regimen is worthless for CH's?  I had the longest cycle in 32 years of suffering because I took the gamble relying solely on this vitamin regimen would work for me and prolonged taking Verapamil until i couldn't take it anymore. 

You've now got local support and a new friend here to help.

-Gregg

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 19th, 2012 at 2:17pm
Hulk,

Adjusted the clock. probably going to try the verap soon although I may have to run off to Cali as my mom is not doing very well. Having some tests done on her liver right now and may be admitted later today. I'll know more later


RTD

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 19th, 2012 at 2:20pm

PlayDoh wrote on Jan 19th, 2012 at 1:40pm:

Zeitgeist wrote on Jan 19th, 2012 at 12:50pm:
However - my point is: The effect of the regimen was instant and I was PF the third night.  One may wonder why, because building up the optimal levels of Vit D serum takes time. That's why I sometimes get the feeling that  Ca and Mg don't get the credit the probably deserve, especially Mg.  I actually broke out of a vicious cycle and a cycle of cycles (chronic CH) in a matter of days. That's close to busting if you ask me.


I very much agree, and 5 times I've dropped my Ca intake in half I get shadows the same night. I'm thinking 5 times can't be coincidence, yet it is possible.

Since Calcium uses D3 to get absorbed, I'm thinking perhaps its helping by just increasing Ca absorption. Perhaps even if you get enough Ca in your diet, but are D3 deficient, you end up not getting enough Ca in your system. Which would explain why some don't need much or any Ca supplements, yet get relief from D3.

This is all speculation, and I almost feel like I'm 'stepping on toes' by doing so, but I can't help but follow the logic. Like you said, if D3 takes a prolonged time to reach increased levels, the almost instant response doesn't seem to make sense.

I've been taking a look at my diet, and I'm now aware of how little Ca I get on a regular basis.

Food for thought  ;)



I thought it was the other way around. The D3 needs the calcium to get absorbed :-?

Rick

Title: Re: 123 Days PF And I Think I know Why
Post by hangup27 on Jan 19th, 2012 at 11:23pm
There was too much good info in this thread to follow each post. BUT...

I started taking D3, Omega 3 Fish oil, and melatonin ( at night). Seems to have helped.

( could also be verapamil taking effect)

Thanks for all the info.

Title: Re: 123 Days PF And I Think I know Why
Post by Cosworth on Jan 19th, 2012 at 11:43pm

PlayDoh wrote on Jan 18th, 2012 at 2:55pm:
It doesn't seem like nausea is that prevalent, yet perhaps most people take the regime with food, which should help with stomach upset / nausea.

Do you take your with food? If not, try that.


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Mr Doh, thanks for the reply. Yes, do take with food so I'm not sure what it is either. I actually had been on fish oil prior to starting the vitamin regimen as my orthopaedic surgeon (knee troubles) recommended high doses (2-3 grams) per day.  I read a lot about fish oil supplements and have tried several - the current one being a nordic naturals brand.  These are highly purified as you mentioned so you are getting a lot more DHA and EPA per 1000 mg. of oil.  For example one brand has 650 mg EPA/450 DHA /180 "other omega 3's in every 2000 mg of oil.   I have another much cheaper brand (Nature Made) that is 720 mg of omega 3's  (360 EPA/300 DHA/60 "other") per 1200 mg of oil.  So, don't think it's the fish  oil as it never bothered me before, but who knows?  If you do some on-line reading about the whole fish oil market it can get really confusing as all the "high end" (read most expensive) brands claim their product is the best, most bi0-available, blah blah.  I may just have to start experimenting taking away one item at a time from the regimen. I hate to do this as I believe it was helping me.  But, the bad news is I increased from 10,000 iu's to 20,000 iu's this week of D3 because i've had almost constant shadows last couple days and even occasionally that really low level headache kip 1/2 that just breaks through for a bit but then fades.  Frustrating as hell. 

Title: Re: 123 Days PF And I Think I know Why
Post by CC_stole_my_Harte on Jan 20th, 2012 at 8:17am
Ok, just an update!  Today is the start of day 3 on D3 regamin, and we had a pain free night last night!!  Hoping this continues!!!!!

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 20th, 2012 at 10:05am
Awesome news CC and hangup27!

I think my Calcium theory took a hit this morning, pun intended. I got a typical shadow that I was attributing to reduced Ca intake, yet I took 1200 mg yesterday.

I should have known better to think I had something partially 'figured out', and more over to share my advice on the topic.

Not to mention its splitting hairs, and however it works, or whatever role Ca, D3, or Omega 3 have, the combination works. Nuff said. ;)

Title: Re: 123 Days PF And I Think I know Why
Post by Cosworth on Jan 20th, 2012 at 11:30am
For Batch - just wondering if there is any evidence anecdotal or based on surveys from Episodics indicating any change in the duration of their cycle while doing this regimen. I've been on the regimen for a month now, and while I think it's stopping my CH's, i'm having much longer shadowing periods - for hours i will have heavy shadows that for me i typically only got early in a cycle and a little at the end.  My cycles have always been a bit of a bell curve, ramping up pretty quickly, staying bad (4+ hits a day) for 6-8 weeks and in total lasting 10-14 weeks on avg.  The longest cycles i've ever had seemd to be where i would use prednisone in the middle to attempt to kill the cluster but seemed to always only extend the cycle by the amount of time i was on the meds.  I guess my fear is that the regimen is similarly supressing the beast but by not letting it out to run it's course then it's actually extending the cycle.  I'm considering trying a busting method soon to see if i can stop the much more subtle (but nearly constant) pain i'm having now.  I guess i need to find time to sit and read all 25 pages of this thread

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 20th, 2012 at 1:03pm

Cosworth wrote on Jan 20th, 2012 at 11:30am:
For Batch - just wondering if there is any evidence anecdotal or based on surveys from Episodics indicating any change in the duration of their cycle while doing this regimen. I've been on the regimen for a month now, and while I think it's stopping my CH's, i'm having much longer shadowing periods - for hours i will have heavy shadows that for me i typically only got early in a cycle and a little at the end.  My cycles have always been a bit of a bell curve, ramping up pretty quickly, staying bad (4+ hits a day) for 6-8 weeks and in total lasting 10-14 weeks on avg.  The longest cycles i've ever had seemd to be where i would use prednisone in the middle to attempt to kill the cluster but seemed to always only extend the cycle by the amount of time i was on the meds.  I guess my fear is that the regimen is similarly supressing the beast but by not letting it out to run it's course then it's actually extending the cycle.  I'm considering trying a busting method soon to see if i can stop the much more subtle (but nearly constant) pain i'm having now.  I guess i need to find time to sit and read all 25 pages of this thread



That is an interesting point you bring up. Through the years I have always equated any treatments I've tried, both abortive and preventive as prolonging my cycle. Other than busting I haven't used either in 4 years. I haven't used Imetrex or the like in at least 6 years as I hated the rebounds and felt it extended my cycle.   My last 3 cycles leading up to this year have been milder and shorter (3 months which is short for me) than years past. I attributed this to my age (52). My father who also had these stopped getting them at 49. So I started believing maybe I'm getting to that point. This years cycle or should I say cycles have been much worse. I say cycles because I had a 6 month right side cycle that ended in early December only to start a left side cycle 3 weeks later which I'm now dealing with. Been on this vitamin regime for a little over 3 weeks now, and seem to be having no luck. While I am very happy it works for many of you, I am seriously considering going back on verapimil due to the severity of this particular cycle. Having said that I am now set up with the O2 Thanks to my new best buddy Gregg who not only helped me with how to get supplies but also explained the proper use. I now know I did it wrong the first time I tried it before so I'm at least happy to have that. Also so very lucky to have a wife that puts up with me and them.

Rick ;)

Title: Re: 123 Days PF And I Think I know Why
Post by anthony g on Jan 20th, 2012 at 7:35pm
Just wanted to share my story with you guys. I have been on vit D3 for probably about a year and a half when my doc down in florida at the time had me on 50,000 iu a week. After coming back to ny and discussing with my good friend batch we decided to take 10,000 iu a day along with the cal/mag fishoil. I have to say Im not the "typical chronic" but I am a typical "chronic stuck cluster shadows" although aint nothing typical about ch! :D For me Im not really sure if the D3 regime is what kept the beast from coming at higher kip levels or not but the regime definitely did not bring me pain free for sure. That being said it helps ALOT of people but not ALL. I continue to take it cause I know there is some benefit to it. I guess I am one of the 30% that it doesnt totally clear my head :( I hope anyone who tries this great protocol that it works for some pf times!!
Just wanted to give some input.
Best to all
Anthony

Title: Re: 123 Days PF And I Think I know Why
Post by 69Strat on Jan 20th, 2012 at 7:54pm
Been on Batch's regimen for 6 weeks. First two weeks, not much help. Next 3 weeks big improvement. Only 2 HAs/day and just Kip 3 or so. I'm chronic and have had up to 8 HAs in a 24hr period with some killers. I decided to try a little test a week ago and weaned off the 900mg of lithium I'd been taking since around the time I started the D3 trial. Oops. HAs back. 4 per day about Kip 5. Thoughts? Obviously I've considered the lithium was the preventative and the D3 hasn't helped as much as I thought.

Thanks!

Title: Re: 123 Days PF And I Think I know Why
Post by Mike NZ on Jan 20th, 2012 at 8:17pm
It could be the combination of the two that is so effective for you.

I use both this method plus verapamil as preventives that together are working great for me. Reducing either seems to have a negative impact for me.

Title: Re: 123 Days PF And I Think I know Why
Post by 69Strat on Jan 20th, 2012 at 11:44pm
Think you're right. Back on Lithium.

Title: Re: 123 Days PF And I Think I know Why
Post by RTD on Jan 22nd, 2012 at 10:21am
Well I'm going to give in and go back on the Verapimil. The vitamins just are not helping me at all. This is as bad of cycle as I've had in years. Don't know if I should stay on some kind of vitamin dosage with the verap. I heard something about the Calcium interacting with the verap in a bad way and don't know about mixing the two. I haven't felt this helpless to these things in a long time.

Rick

Title: Re: 123 Days PF And I Think I know Why
Post by j.p.m. on Jan 26th, 2012 at 11:33pm
12 days on the regimen, and I've been almost completely PF.  I've even been able to taper the Verapamil from 240mg to 80mg per day without any adverse affect.  I think it has helped increase my energy levels and mood as well.   Between the 02 and now this, I've gotten more help from these message boards than all the doctors I've seen combined.  Huge thanks to all, and keep spreading the word.

-JPM


Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 27th, 2012 at 12:31am
That's awesome J.P.M. I too have found more relief and support from this site and its members then any medical resources.

If you could, please take the survey and share your results. It only takes 5 mins, and is completely anonymous.

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Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Jan 27th, 2012 at 1:41am
Cosworth, RTD, Hangup, Jamie, 69Strat, j.p.m., All,

Great news from CH'ers new to this regimen, and as always, good questions and comments.  Good on the new CH'ers who started this regimen and found it effective.  Your comments carry far more weight with CH'ers standing on the sideline wondering what to do than anything I could say. 

Please forgive the delay in responding.  I've run some of the questions and comments by experts in this area in order to make sure I address them as best possible. 

Like PlayDoh has asked, we still need more folks to take the survey if they've been taking the anti-inflammatory regimen for a month, had a significant reduction in the frequency and severity of their CH, or gone pain free, whichever occurs first.  It's at the following link:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

With around a third of the survey responses I expected, there's nothing in the comments that suggest this regimen extends an episodic cycle.  On the other hand and to the contrary, there's more than sufficient evidence from the survey that this regimen cut the cycle short for the majority of the episodic CH'ers.

Based on the lab results many of you have posted, PM'd, or sent by email, the optimum target therapeutic range for 25(OH)D concentration for CH'ers to remain pain free appears to be 60-90 ng/mL, (150-225 nmol/L).  This is a higher concentration than the lower threshold of 30 ng/mL, ~ 50 nmol/L, used to express the normal reference range typically listed by medical diagnostic labs when they give you the results of your tests for 25(OH)D. 

I also have lab test data on 25(OH)D concentrations from CH'ers who were still having active CH...  The highest concentration reported in this category was 42 ng/mL, (105 nmol/L).

Accordingly, if your lab results come back at less than 60 ng/mL, (150 nmol/L), that could easily explain why the beast is hammering out a tattoo with barbed drumsticks on the backside of your eye.  If your labs come back at 30 ng/mL, (75 nmol/L) or less...  it's a no brainer... you're clearly deficient… but some of you already know that.  If you haven't taken the time to ask for this lab test...  you may be whistling in the dark...

Just be aware that most physicians will look at your lab results for 25(OH)D and tell you any concentration over 30 ng/mL or 51 nmol/L is in the "Normal" range...  when you know it needs to be higher.

What I've been trying to say is that for a CH'er who wants to be pain free of the beast and remain that way, the data collected so far suggest that we need to have our 25(OH)D concentration at or above 60 ng/ml, (150 nmol/L)... 

Even after we've had a favorable response, we'll still need to continue taking this regimen with a vitamin D3 dose that keeps building our 25(OH)D concentration so that it stabilizes in a therapeutic range.

That some medical diagnostic labs here in the US express concentrations in molarity/volume vs mass/volume may reflect some kind of Eurocentrism... or it may be just a simple matter of the type of test procedure they use... or that they're owned by a European corporation... 

I don't know... and it doesn't really matter...  they could express the 25(OH)D concentration in stones per cubit, furlongs per fortnight or miles per gallon... as long as it converts to a range of 25(OH)D concentration equivalent to 60 to 90 ng/mL, (150 to 225 nmol/L).

The dose of vitamin D3 we take to get into this range and have a therapeutic response appears to be the underlying question in many of the recent posts...  Calcium and the other mineral supplements, i.e., cofactors, appear to be a related topic as is whether or not to continue taking other prescribed CH preventatives.

Take a close look at the following chart that came from a 2003 study published in the American Journal of Nutrition (attached) on the 25(OH)D  response to oral dosing with vitamin D3 conducted by Dr. Robert Heaney, M.D.  Dr. Heaney is one of the Nations top endocrinologists dedicated to the study vitamin D3 as it relates to our overall health.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

I've modified his original chart to show 25(OH)D concentrations in both ng/mL and nmol/L.  I've also overlaid the color bands that reflect 25(OH)D lab results provided by many of you both before and after going pain free while taking the anti-inflammatory regimen with vitamin D3.

There are a few things you need to take away from this chart.  The first point is if you're in the pink zone and getting whacked by CH day and night...  you need to have a sufficient intake of vitamin D3 for the resulting 25(OH)D concentration to reach and stabilize in the green zone.

The second point is how much vitamin D3 to take in order to get into the green zone.  As you can see from the chart, a vitamin D3 dose of 1,000 IU/day is not going to get you there...  In short, that dog won't hunt...

Moreover, a dose of 5,000 IU/day may or may not get some of us into the green zone... The other problem with a vitamin D3 dose this low is it could take two to three months to find out...  Given that most CH'ers, myself included, are an impatient lot, and we expect immediate results when we try a new treatment for our CH...  waiting that long for a response to a medication is UNSAT, a non-starter, and an unfortunate reason to say this regimen doesn't work when it may have had the dose been high enough.

That leaves us with a conservative vitamin D3 starting dose of 10,000 IU/day.  As you can see, each higher dose of vitamin D3 results in a steeper slope of the initial 25(OH)D response curve and a higher equilibrium end state.   It doesn't take much imagination to see that a dose of vitamin D3 higher than 10,000 IU/day should have an even steeper initial response curve.  Now I'm going to use the results of another study to show how to optimize the vitamin D3 dose into a statistical slam dunk if needed.

Take a look at the following chart also developed by Dr. Heaney from the 2011 study by Garland et al, published in the American Journal of Nutrition (attached).  It's based on data collected by GrassRootsHealth in their D*Action Project where 3667 people paid to have their 25(OH)D levels tested every six months while taking various doses of vitamin D3 up to and including 10,000 IU/day and higher.

See the following link for details of the D*Action Project: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

I've modified this chart by drawing a line from a 25(OH)D concentration of 60 ng/mL to a point where it intersects the lower boundary of the 95% probability band around the 25(OH)D response curve from all doses of oral vitamin D3.  I've also drawn a second line from that point down to the vitamin D3 dose needed to reach that 25(OH)D concentration.  As you can see, that line comes down at a vitamin D3 dose of 20,000 IU/day.

Here's the take away...  While a vitamin D3 dose of 10,000 IU/day is effective, and it will get most of us into the green zone, i.e., 25(OH)D concentration ≥ 60 ng/mL, (150 nmol/L) and for at least 70% of us who do respond with a significant reduction in the frequency and severity of our CH or go pain free...  a vitamin D3 dose of 20,000 IU/day will get 95% of us into the green zone... and likely a little faster.

What to do?  Let me first start with the obligatory non-disclaimer:  I'm not a doctor nor am I licensed to practice medicine or nutrition in the venue in which you reside... even though I did stay at a Holiday Inn a few years back...  ::)

Talk with your PCP or neurologist... whoever knows the most about your overall medical history, your CH and prescribed medications. 

I say this for two reasons...  The first is to keep my butt out of jail... and the second is to start spreading the news within the primary care and neurological community of practitioners treating CH'ers that we have a growing body of evidence that suggests this regimen of vitamins and minerals actually works to prevent CH.

You may be conducting nutritional CME with a few of them... Having said that, most physicians should be receptive and even fascinated when you explain what you want to do and why.  Provide the above data and analysis then prove it by asking for the lab test for 25(OH)D if you haven't already done so.

Now for the rest of the answer on what to do... and why... The general rule with respect to medications and supplements is to take a conservative approach...  meaning take only as much as needed to achieve a therapeutic response.  The best way to do that is start at a low dose and titrate up with progressively larger doses.

We're all a little different and we react differently to some medications...  we've heard that many times in many posts here on CH.com.

Having said that, let me challenge the conventional wisdom behind that statement... We're all carbon-based units and we all have the same number of chromosomes...  That means we should all respond to the same physiological rule sets that control human life...  under normal conditions.

For example, we should all respond to the same dose of vitamin D3, with the same eventual range of serum concentrations of 25(OH)D.  Studies have proven that.  Remember, vitamin D3 is the only "Free" vitamin.  Our bodies generate in the skin when exposed to the UVB in sunlight.  Also recall that vitamin D3 is not a true vitamin. It's actually a hormone precursor, and as such, our bodies need the cofactor minerals to generate it in sufficient quantity.

I can hear the wheels turning...  Where are we going with this discussion?  Here you go…  If we're all so different as CH'ers, and we all respond differently to some medications... then will someone please 'splain to me the following:  If we're all so different...  Why is it that we all have, under normal conditions, the exact same body temperature of 98.6º F (37º C), the same arterial pH of 7.35 to 7.45, the same serum calcium at 2.1 to 2.6 mmol/L... and the list goes on...

So lets review the bidding...  So far, 70% of the CH'ers who start this regimen have a favorable response with a significant reduction in the frequency and severity of their CH.  95% of them found relief within the first 10 days with some in as little as 24 to 48 hours.  88% of these CH'ers enjoyed a 24-hour period pain free of their CH within the first 20 days...  Of them, 66% have remained pain free.

Most of these CH'ers were taking 10,000 IU/day vitamin D3, but there are growing number of CH'ers who are following the treatment protocol I posted and have titrated up on their vitamin D3 dose...  some up to 30,000 IU/day.

It's ok to increase the dose of vitamin D3 above 10,000 IU/day, but only after 10 days to two weeks just to make sure there's no delayed reaction and that you've given your kidneys and liver time to come up to full production of 25(OH)D.  Even then, it's best to titrate up on the vitamin D3 by 5,000 I.U. every three to four days. 

If your CH pattern responds favorably or you reach 30,000 IU/day whichever occurs first, stay at that dose.  Also make sure you tell your PCP or neurologist...  You'll also need another lab test for 25(OH)D in 30 days along with calcium and parathyroid hormone (PTH).

Calcium...  Why is it part of this regimen?  Simple...  Most of us don't get enough of it from dietary sources.  The calcium citrate and citric acid in lemonade or limeade also forms a buffer in the stomach that can elevate arterial pH making it less acid and more alkaline.  Calcium citrate is also easier on the gut and doesn't need to be taken with food like calcium carbonate.

Calcium is the most prevalent mineral in our bodies and 99% of it is in out bones.  Our nerves wouldn't function if the serum concentration of calcium is too low or too high.  Calcium homeostasis keeps our serum concentration in a narrow range of 2.1-2.6 mmol/L, (8.4-10.5 mg/dL).  The two primary controllers in this process are calcitonin and parathyroid hormone.

If we perturb that homeostatic balance of serum calcium concentration by dumping more vitamin D3 and it's active metabolite 25(OH)D into the blood stream, they trigger a reaction that absorbs more calcium from the gut into the bloodstream...  If sufficient calcium is not present in the gut...  this process will take it from the bones...

If there's sufficient calcium in the gut, calcium homeostasis with its primary controllers, calcitonin and parathyroid hormone, takes control. Excess serum calcium is either added to the bones through accretion, or the kidneys excrete it...

Finally, as most of us will need to stay on a daily dose of vitamin D3 to remain pain free of our CH for years if not longer...  it's prudent to include at least 500 mg. of supplemental calcium to help prevent bone loss...

Why do we need the cofactors, i.e., magnesium, vitamin K, zinc and boron?  Simple... The Vitamin D Council says we do...  These supplements all play a role in the kidneys and liver as they metabolize vitamin D3 into 25(OH)D. 

How much to take is a good question.   I thank my dumb luck of selecting the Kirkland brand of calcium citrate as my source of supplemental calcium.  Two of these tablets provides 500 mg/day calcium, some extra vitamin D3, magnesium, zinc and boron...  It may be a little light on magnesium and there's no vitamin K...  but that's an easy fix.

Omega 3 Fish Oil has anti-inflammatory properties that may be helping to hold down the neurogenic inflammation that's part of the cluster headache syndrome.  It also does wonders in controlling and lowering the triglycerides or fatty lipids we burn for energy, store as fat, or that clog the arteries in our hearts...

That brings us to the frequently prescribed CH preventatives...  So far, none of them appear to interfere with the anti-inflammatory regimen... As long as a prescribed preventative is effective... continue to take it...  If it's not effective...  ask yourself... "Why am I taking it?"  Talk with your PCP or neurologist about tapering off of preventatives that are clearly not working...  after you've been on the anti-inflammatory regimen for at least a week to 10 days...

There's always going to be a red flag raised on taking calcium supplements with verapamil...  This is really a non-problem...  There are a lot of folks taking verapamil for a heart condition...  and they still need calcium supplements for one reason or another.  If their cardiologists can come up with a treatment schedule that permits them to take both verapamil and calcium supplements...  your neurologist ought to be capable of doing the same thing...   If you're unsure, skip the calcium and see what happens…

Finally we have the comorbid conditions... i.e., medical conditions you may have other than CH...  In other words, not normal... Some of these medical conditions are unrelated...  others can clearly have an impact on CH patterns and treatments.

From the above discussions, medical conditions that affect the GI tract, kidneys, liver, thyroid, and parathyroid may have an impact on the body's capacity to metabolize vitamin D3 into 25(OH)D...  There are several others with the potential to cause problems like diabetes, COPD, sinusitis, and allergic reactions...

The bottom line here follows...  If the anti-inflammatory regimen has not resulted in a favorable response with a reduction in the frequency and severity of your CH after 30 days or less...  there may be a good reason... other than... "It didn't work for me..."  Ask your PCP or neurologist to look for it.

Hope this helps,

Take care,

V/R, Batch


http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Garland.pdf (160 KB | 0 )

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Jan 27th, 2012 at 3:23am
I feel like printing that post out a few hundred thousand times and mailing it to every CH'er, Neurologist, Doctor and pharmacist alive today.

You always seem to sum up every bit of pertinent info, in the most clear and easy to understand way. I wholeheartedly believe you should write a book and/or medical journal.

I recently watched a TV show (The Nature of things with David Suzuki), about Autism (Autism Enigma). Out of all the experts and scientists, it was a mother of an autistic child who did research. She noted how her Autistic child had abnormal stools and learned of a bacteria in the gut that could be responsible.

She hypothesized that this bacterial imbalance could play a role in Autism and wrote numerous medical researchers regarding the matter. Only one took her notion seriously and actually implemented a study. Low and behold the children's autism nearly disappeared and they became almost normal while taking medication to effect the stomachs bacteria appropriately. However the effects eventually 'wore off', sort to speak, due to the nature of resiliency.

Yet this Gut-Brain-Autism relationship is now at the forefront of Autism research. All started by a house-wife. I love it.

Sorry to get off track, but I think someday the world of CH will look back at Batch's work, and to some extent NHS, as the catalyst of great understanding and effective treatment.

I can't thank you enough for your work Batch. You have in no exaggeration, have given me a great part of my life back. To be PF is such a blessing, and I rejoice in it every morning I wake up fully rested and not drained of most of my energy and optimism for the future. I have a 1 1/2 year old whom I now get to spend even more time with. I could go on for hours listing the ways my life is better, and its only been just over a month.

"Thank you" seems such a weak reward I can give, yet if my sincerity can somewhat strengthen that reward, I hope it does.

Title: Re: 123 Days PF And I Think I know Why
Post by jonmach on Feb 1st, 2012 at 10:56am
Great Thread
I have been controlling the beast with pharmaceutical grade nutritional for 10  years.  oxygen has been an incredible friend for years.
I take quite the regimen of nutritional 3 things being the key to effectiveness
1. Omega 3 fatty acids.    there are many on the market but few that have the proper dosages of DHA vs  EPA. and the process and origin of where and how they are farmed and produced.  also Oleic acid are Omega 9 fatty acids and a key to helping the DHA EPA enter the system effectively.  the Pharmaceutical grade avail by prescription only are your best bet.  or email me and i will hook you up with the best on the market OTC.
2. OPC's very high powered antioxidants.  great anti inflammatory qualities with better saturation of O2 on the cellular level being key.  Oxygen therapy on the cellular level
OPC's again ingredients quality and quantity are key.  email me and i will share the best i have found.
3. Vit D3 with k2 this is very good for cardiovascular health and healthy arteries.  once again o2 on the cell level.  Sun Shine in a bottle.  once again quality is key and i can help with what i have found to be the best. 
i also utilize an antioxidant called Orac similar to OPC's Different family.  also use Colloidal minerals a multi vit and Co-Enzyme Q 10 also for cardiovascular health and o2 efficiency.
I have taken control of the beast for better than a decade with my regimen and forgot just how bad things can get till last year when i got lazy with nutritional for 6 months.  got a visitor i never wanted to see again.  back on track and am in cycle now with no break thru.  i would say i spend 180 to 220 dollars a month and what i recieve for this investment is pricless.  been to hell and back a few times in this game.  I have been off all pharmaceuticlas since 1998. Hope this helps and am here for anyone who needs me.
GOD BLESS YOU ALL
719 243 3229 / bushido39@yaoo.com
Jon M

Title: Re: 123 Days PF And I Think I know Why
Post by RichardN on Feb 13th, 2012 at 10:47pm
Hi Batch

  I'm back online after several months. 

  First post has to be a THANK YOU.  The last 02 tanks (six "E"s) I got was 10/14/11 . . . . I would have had at least two full tanks when I got them.  I currently have two full and one partially full tanks.  This past summer  was horrendous and was using 2-3 tanks daily . . . many faster-than-normal Kip 8s.

  PAIN FREE SINCE SECOND WEEK OF NOVEMBER!   . . . after being chronic since 1/01 . . . normal triggers aren't affecting me (exhaust fumes, solvents, etc.) . . . I've even had a couple of double brandy/water drinks this past two weeks (Still nervous about the "beer test"). . . . I'm ecstatic . . .pretty sure I can get used to this . . . . . and if this (unaccustomed) PF time continues I'm optimistic about working again.

  Thanks again, and now that my puter' is up and running again I'll be back in the boat grabbing an oar.

   Be Safe,    PFDANS

      Richard

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Feb 17th, 2012 at 6:29am
Hey Richard,

Thanks for the update...  Three months PF...  Woo Hoo...  That's exactly the kind of success story I love to hear from a CH'er taking the anti-inflammatory regimen... 

I'm particularly happy you're optimistic about going back to work...  It's an amazing feeling isn't it?

Now you're in the same boat and along for the ride with me and all the other CCH types who responded to this regimen...  It's a wonderful cruise ship called Excellent QOL...  Something none of us thought possible with CH.

The admission price for this pain free pleasure cruise is you'll just need to stay on this regimen a good while if not for life like me, but that's a small price to pay as we both still have CCH.  It's the vitamin D3 that's keeping us PF and likely keeping us a lot more healthy in the process.

And PlayDoh...  Thanks again for the kind words.  The proof is in the pudding... It's not what I've been saying, it's what so many other CH'ers, like you and Richard, are telling us about their response to the anti-inflammatory regimen that counts most.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Danish girl on Feb 23rd, 2012 at 9:14am
Ok here goes.
I,m new here and not a sufferer myself, but married to one the last 15 years. He only got diagnosed in 2010, so we're still trying to work out what works and what doesn't....though he has known the beast for ever. It was just diagnosed as migraine earlier on.

I read about this on the danish forum, where the well known NIels has been very active "selling" the D-vitamine-treatment. So now I've spend the last 48 hours reading in this forum, trying to get an overvue of just a small amount of all the information in here. And what a great place to be  :D I'm overwhelmed!

Well, we started the treatment with a smaller amount of D3, magnesia, zink, omega3 and so on 6 nights ago, after the first week of a cycle building up. And after adjusting the D3 to a slightly higher dose, my husband has only had 2 small attacks the last 2 days - and is at work today! Something that would NEVER have occurred during his "normal" 5-7 weeks cycles.  :o

So we're VERY optimistic and continues.

Thank you so SO much for this great source of knowledge and inspiration. And thanks to all sharing their experiences in here.
Love from Denmark :)

P.S. he's also on the O2 (- this is what all CH-sufferers is offered to have for treatment in Denmark - combined with verapamil and different sumatriptan products.) The O2 is delivered and everything :D
Hooray for free healthcare - even though we then have to pay 38% in taxes to our government  :o...as the lowest income tax.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Feb 23rd, 2012 at 12:36pm
Hey there Danish Girl,

Thank you for the wonderful news about your husband's response to vitamin D3 and the other supplements.  Niels is spot on recommending this regimen.  He tried to tell us about the use of vitamin D3 as a CH preventative in 2009...

Take your husband in for the lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D, the serum level metabolite of vitamin D3.  As he is still having an occasional CH, I'm guessing his concentration of 25(OH)D will be somewhere between 40 and 60 ng/mL, (100 and 150 nmol/L).

Thanks again for the wonderful news.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by PlayDoh on Feb 25th, 2012 at 4:02pm
I had an appointment at the University hospitals Headache clinic, yet I've been PF for over 2 months now. I brought in a list of the regime ingredients, and told the Neurologist how it stopped my cluster in 2 days.

She didn't seem to be that impressed, or already knew about it. It was a pretty quick appointment, and she only had time to let me know what to do if I get another cluster. She actually said to me, "if your clusters return", in a manor that implied the regime may keep them away. Even though I didn't suggest that.

She showed me a list of Vitamins that they give to people with "normal headaches". It had everything but Omega 3 and Calcium. Yet only 2000 IU of D3 was suggested.

Its at least interesting to note that I went PF while only taking the regime with only 1200 IU of D3, by accident. Also that she reminded me that Verapamil is the 'go-to" medication, which is a Calcium-Channel Blocker. I continue to suspect that Calcium has a large role to play in my relief, yet the interactions of Calcium and D3 make distinction almost moot.

I feel I should have been more explicit about the Regime, but I was shocked when even the nurse asked me if I was taking supplements while filling out the chart for the Dr.

Great News on the success Danish girl and RichardN. Dont forget to take the survey if you can spare 5 mins of time. Its best to wait a couple weeks of being on the regime, or longer.

Title: Re: 123 Days PF And I Think I know Why
Post by MemyselfandI on Feb 25th, 2012 at 9:54pm
Hey Gang,
I have good news to report.  It's taken almost 9 weeks and I've finally had a week and a half that is pain free.  I think the regimen has been successful for me. 
My current cycle started at the start of November and none of the standard verpamil/prednisone treatments were able to break it.  After 3 weeks on the Vit D treatment my 25(OH) D level was at 23.5 ng/ml.  Over time on the vit d regimen the headache intensity dropped over time and I started to have pf days.  The longer I stayed with the treatment the greater number of pf days that I was having.  It got to a point that I didn't need an abortive for the mild hits. 
I did up my dose of vit d (to 15k) for almost 1.5 months to get my 25(oh)D up into the safe zone faster.  Now that I've been pf I've started to wean back down. 

I did notice something interesting.  During the phase when I was raising my vit d level the hits were getting milder.  When I came down with a cold, that caused me to breath through my mouth (which can effect your body's ph) the intensity and frequency of the hits increased.  Now during this time I would estimate that I was still on the edge of the active cluster headache territory, according to Batch's chart.  It maybe coincidence but something to keep in the back of our minds. 

I did make one change to the regimen.  I upped the dose of magnesium to 400mg/day.  I had read at a number of different natural health sites that people taking 400mg/day of magnesium had beneficial responses to various types of headaches. 

Next time I'm in to see my pcp I will try to get her to run the 25(oh)d test to see where the level is while pf. 

Who would have thought that such a simple regimen could have such a positive effect for such a number of people.  Thank you to all those people who have helped further this treatment.  It really does make a big difference to so many people. 

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Feb 27th, 2012 at 10:11am
Hey MM&I,

Great status report on your experience with the anti-inflammatory regimen.  I'm happy it's working well for you.  The fact that you had a serum concentration of 23.5 ng/mL 25(OH)D after three weeks on this regimen certainly explains why it took 9 weeks to finally go completely pain free...

That's a great message and lesson in patience for a lot of the CH'ers who have yet to respond to this regimen or gave up taking it when they didn't have a favorable response after three to four weeks.

Dr. Peter Lewis, M.D., an integrative physician in Australia who regularly treats patients deficient in vitamin D3 indicated he has seen many cases where his patients started vitamin D3 therapy at 10,000 IU/day with a 25(OH)D serum concentration of 20 ng/mL, and it took up to three months to reach 60 ng/mL.

According to Dr. Robert Heaney, M.D., one of the Jedi Masters of vitamin D3 therapy, there are a lot of factors involved in building 25(OH)D levels.  These factors range from the vitamin D3 dose, the rate at which vitamin D3 is metabolized by the kidneys and liver into 25(OH)D, how fast the body consumes 25(OH)D and how fast the body's fatty tissues absorb it.

If you throw in a comorbid medical condition that affects the kidneys, liver, or thyroid...  all bets are off on how long it will take to elevate the serum concentration of 25(OH)D to therapeutic levels sufficient to prevent CH.

Even a common cold appears to have an affect on my CH.  My headache logs before I started the anti-inflammatory regimen indicated the same increase in frequency and severity during a cold as you experienced. 

When I asked my doctor at NIH if he knew why that happens... (he also has a Ph.D in immunology), He explained the inflammation associated with a viral infection like a cold (viral rhinitis), could easily spread beyond the upper respiratory tract including the sphenopalatine ganglia that link directly to the areas in and around the trigeminal nerves that affect the cluster headache.

Take care and thanks again for the update.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Callico on Feb 28th, 2012 at 10:35pm
I've been on the program for several weeks now and no change.  If anything the beast has awakened.  The last 5 weeks have been brutal.  However, I had blood work done today, so I'll be hearing from the Dr soon about the D3 levels.  I'm planning to up the dosage substantially to see if I can get any relief then.

So glad to hear from all that it works for!  I always rejoice at good fortune.  It gives hope that one day I'll find the magic bullet too.

Jerry

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Feb 29th, 2012 at 1:55am
Hey Jerry,

Hang in there...  Having an old hand CH'er like you give this regimen a try is encouraging...  Knowing your 25(OH)D levels is an important indicator.

Upping the vitamin D3 dose might just speed up the process...  Several CH'ers have done this with success by taking 15,000 IU/day for 3 to 5 days to see if that works, then increasing the dose to 20,000 IU/day.  And don't forget to take the caldium, as well as the cofactor minerals, magnesium, zinc and boron.

9 weeks to three months for a favorable response is not unreasonable if the initial 25(OH)D levels were lower than 30 ng/mL

The other thing to check involves other possible comorbid medical disorders.  CH'ers who have had lengthy response times or not responded at all to this regimen, have also suffered from one or more conditions affecting the heart. liver, kidney, thyroid, pancreas, allergies or digestive disorders...

Again, hang in there and Semper Fi

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by bsic on Mar 3rd, 2012 at 10:35am
Guys,

Some information on my history with this regimen.  I can say with 100% certainty that it works, but i also am wondering if it is prolonging my cycle. 

This current cycle has gone for 3X my typical and still going strong.

  • ~Dec 1, my cycle starts.
  • Mid Dec i read this very thread
  • Dec 22nd I measure my 25OHD and start the regimen at 10000IU.

At the time i started it, my 25OHD was 20.9 ng/ml.  I started taking 10000UI and initially my attacks intensified.. after a week or so they started aborting much faster with O2 than they had before the regimen.  But still waking up 3-4 times per night.

  • Jan 1st : I then tried increasing to 20000IU 

Within 2-3 days, they tapered off to 1-2 hits per day, VERY light (kip1-2), and a few min on the O2 nailed em.  I kept this up for a few weeks.

  • Jan 15th - pain free period begins for a few days for the first time. 

I had my 25OHD measured again on 1/30.. this time, it was 104.  Most nights PF, some with weaker attacks near my normal wake time, and a few rare days where a stubborn one popped up.   But very tolerable and far better.

  • Feb 5th, they all but disappeared. 
  • Feb 9th, I lowered my D back down to 10000IU for three days

After those three days I was getting hit again!  And hit BAD.  Moving up to kip4-6, and getting 2-3 at night.  I increased back to 20000, and over the next 1-2 weeks id have some good nights, some bad.

  • Feb 12th, increase back to 20000IU

Over the next 10 days- some nights good, some not so good.  None awful.  A couple hit Kip7 but O2 nailed em fairly quickly.

  • Feb 24th, pain free again... 100%.  I go 7 nights PF without a trace of even a shadow.


And on top of that, i just FELT good.  Felt like i did physically/emotionally before the cycle started in Dec.  I felt like ME again for the first time... the previous pain free periods had me cautiously optimistic, but still felt tired, cranky, depressed, and just not myself.  But this time was different-- 7 days of feeling great, no pain, just out in the clear.  Life is good... right?


  • March 1, I go one night where I (accidentally) skip the regimen.
  • March 3rd (today) got hit twice again.  





So the conclusion is definitely that the D regimen helps.  Every time i reduce or stop taking it, ~2 days later I get hit again.   So it WORKS.  For me.


BUT- -- i have NEVER EVER had a cycle nearly this long.  Usually 3-5 weeks total.  We are on week 15.   

So I am not only fearful that this D is pronlonging my cycle, but at SOME POINT my 25OHD is just going to get to toxic levels.  Ive been taking 20000IU for months now.  I cant keep taking that much, but its apparent that if i stop, my CH will come back quickly.

If you have the same type of story, please SHARE here so all are well informed.

Bill

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 4th, 2012 at 4:40pm
Hey Bill,

Thank you for the excellent feedback on your experience with the anti-inflammatory regimen.  This is exciting info...

Let's start with your initial concentration of 25(OH)D at 20.5 ng/mL...  You were clearly vitamin D3 deficient...

From the data I've collected so far, an initial increase in severity like you experienced happens about 5% of the time...  We don't know why this happens just yet.

However, the first favorable response with a reduction in the frequency and severity of your CH at a little over 3 weeks given your your initial 25(OH)D level and dose of 20,000 IU/day is consistent with response times for other CH'ers who had a favorable reaction to the anti-inflammatory regimen.

Regarding your concern about reaching a toxic level of 25(OH)D...  The best available information from several studies indicates the lower threshold for vitamin D3 intoxication is 200 ng/mL, (500 nmol/L). 

We all respond to vitamin D3 with slightly different 25(OH)D response rates, but the response curves are all shaped much the same just shifted higher or lower.  They all tend to reach an equilibrium at the six month mark as the slope of the curve reaches zero and goes essentially flat.

Your 25(OH))D concentration that tested at 104 ng/mL after 39 days looks about right according to the equation for estimating 25(OH)D response shown in the following chart.  This formula was developed by Dr. Robert Heaney M.D., one of the Jedi Masters of vitamin D3 therapy:

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I used his 25(OH)D response formula adjusted for a vitamin D3 intake of 20,000 IU/day shown as the dashed line in the chart above and plotted the results of your two lab tests at day 0 and day 40.  As you can see there's a good agreement.  I then extrapolated the 25(OH)D response out to the six month mark.

Again this is just a rough estimate, but it appears your 25(OH)D concentration will reach equilibrium near 147 ± 20 ng/mL by day 180 at a dose of 20,000 IU/day.

I'm not a doctor so the only way to know for sure where your 25(OH)D concentrations stands at this point is to get tested again, only this time ask for a chemistry panel lab test with CBC (complete blood count) so your doctor can check your calcium and magnesium levels as well as to make sure your other lab values are within the normal reference ranges.  A test for your parathyroid hormone (PTH) level is also a good idea.

The attached study by Garland et al, concluded that "Universal intake of up to 40,000 IU vitamin
D per day is unlikely to result in vitamin D toxicity.
"

There's also an excellent discussion of vitamin D3 toxicity at the following Vitamin D Council link:

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Now for the exciting part...  As it appears you've reached a therapeutic response at 25(OH)D concentration ~115 ng/mL, you're going to need to work with your doctor to determine the optimum maintenance dose of vitamin D3 to remain pain free of your CH.

As long as your 25(OH)D serum concentration remains below the 200-250 ng/mL threshold for vitamin D3 intoxication and your serum calcium level remains within the normal reference range, you're likely safe continuing a therapeutic dose of 20,000 IU/day vitamin D3 at least until your next lab test.  Having said that, a monthly test of your 25(OH)D serum concentration is prudent.

Discuss this with your doctor and show him this post along with a printed copy of the attached article by Garland et al.

As your goal now is to determine an optimum maintenance dose of vitamin D3, when you've reached the point where you've remained PF for at least a month at a vitamin D3 dose of 20,000 IU/day, test your 25(OH)D level then reduce your vitamin D3 intake down to 15,000 IU/day then test again after a month. 

If you remain PF at a vitamin D3 dose of 15,000 IU/day, your 25(OH)D concentration should stabilize around 120 ± 15 ng/mL at the six month mark.

Take care and please keep us posted.

V/R, Batch

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Garland.pdf (160 KB | 0 )

Title: Re: 123 Days PF And I Think I know Why
Post by Callico on Mar 5th, 2012 at 8:49pm
Hi Pete,

Thanks for the kind words about me being old (or whatever you said  :D)  i saw my GP (resident) today and she also called in her attending Physician.  They were a little concerned about the amount of Vit D I was taking and were afraid I would go over 100 ng/ml if I continue.  I was at 73.3.  I'm not concerned about toxicity, but my wife was in the room and I'm getting a bit of flack.  Would you suggest going to 20,000IU or should I try 15,000 for a while first? 

I really appreciate what you are doing here.  I was trying a different regimen that did not pan out, else I would have been trying this one sooner.  I had wondered if there might be something to the Vit D theory when Niels first broached it when I got thinking about the much higher incidence of CH in the Northern and Southern climes where sunlight is limited for longer periods of time. 

I do hope this works.  Being an "old hand" as you said, I'm about to run out of options.

BTW, the doc also got the wife wound up about O2 usage today too.  He thinks 40 lpm is way to much, saying once the blood is oxygenated it can't do anything else for you.  I know better, as do you, and he was not interested in any papers on it either.  I think the next time I go in I'll be taking some of your work in with me and educate him whether he wants it or not.

All the best,
Jerry

Title: Re: 123 Days PF And I Think I know Why
Post by Mike NZ on Mar 6th, 2012 at 2:51am

Callico wrote on Mar 5th, 2012 at 8:49pm:
BTW, the doc also got the wife wound up about O2 usage today too.  He thinks 40 lpm is way to much, saying once the blood is oxygenated it can't do anything else for you.


Well once a doctor starts ignoring published scientific papers from reputable, peer reviewed journals it says that it's time they changed their title from doctor to something more applicable to someone practicing pseudo-science.

We know what works and there is clear medical evidence to back it up.

Mind you, I was told that anything over 10lpm would make my blood boil by one medical "professional" and another said that oxygen was a dangerous drug that people should be weaned off!

Title: Re: 123 Days PF And I Think I know Why
Post by Callico on Mar 6th, 2012 at 10:53am
Mike, I don't think it is so much ignoring the articles as not even reading them.  CH is not his line of practice and I am just one of many patients he deals with as Attending Physician to several Residents.  Fortunately, my Neuro is more knowledgeable and understands O2 usage.  He is the one who gave me the script for O2.  His only question was "How much do you want me to write it for?"

Jerry

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 8th, 2012 at 2:53pm
Hey Jerry,

Thanks for the update…  and sorry to be so slow in responding…  I've been trying to compile some of the anti-inflammatory regimen survey data for the last few days…

Regarding how much vitamin D3 to take…  It's dealer's choice on whether to take 15,000 or 20,000 IU/day of vitamin D3.  The higher daily dose might push you into remission a bit faster, but in either case, it's wise to have the 25(OH)D lab test every month until it reaches equilibrium and stabilizes around the six month mark. 

If you can tell me the number of days you were taking 10,000 IU/day vitamin D3 before your last test for 25(OH)D I can work up an estimate on the rate you're building this metabolite and where it will reach equilibrium and stabilize at a given dose of vitamin D3.

It's not surprising that your physicians got antsy about your 25(OH)D serum concentration going over 100 ng/mL.  Staying within the "normal" reference range for medical diagnostic lab results is generally considered a safe medical practice. 

The best information available indicates the vitamin D3 intoxication lower threshold for 25(OH)D concentration is 200 ng/mL.  That would take a vitamin D3 dose >40,000 IU/day for at least 3 months...

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Read through the References at the bottom of this page...

To put the "risk" of hypervitaminosis from vitamin D3 in perspective...  There was one death in 2004 attributed to vitamin D3...  it was a child and mistakenly given over 1,000,000 I.U. vitamin D3. None since...

At nearly the same time, there were 59 confirmed deaths due to aspirin poisoning in 2003 and 147 deaths known to be associated with acetaminophen-containing products (Tylenol).

Health risks from a vitamin D3 deficiency are far greater...

It's also not surprising that your physicians opined that an oxygen flow rate of 40 liters/minute is too high when it comes to oxygenation of hemoglobin…  That's entirely true, but unfortunately that opinion doesn't consider carbon dioxide levels that require a greater level of lung ventilation to reduce than provided by an oxygen flow rate of 15 to 25 liters/minute.

If you challenge most physicians why the upper boundary of the 25(OH)D reference range is set at 100 ng/mL, most will give you a blank look like you're speaking in tongues…  Many physicians are frequently a little confused at who to believe when it comes to interpreting 25(OH)D lab results and it's not their fault. 

Testing for vitamin D metabolites has exploded over the last few years with some diagnostic labs reporting an increase from a few hundred tests for 25-Hydroxyvitamin D a month three years ago to over 12,000 a month in 2011. 

Add in the confusion factor of whether or not to use total Vitamin D or D2/D3 and the number of questions starts going up.  Immunoassays and protein binding assays can only report total.  Total vitamin D has been the only measurement available for years and it appears to be the most widely accepted.  However, chemical assays can report both vitamin D2 and D3. Whether or not that’s needed is controversial.

Compound that with at least five different assay methods and no clear standards until 2009 when NIST stepped in.  The National Institute of Standards and Technology (NIST), in collaboration with the National Institutes of Health's Office of Dietary Supplements, developed a new reference sample for vitamin D in blood serum to help laboratories validate the accuracy of their test methods.  The NIST Standard Reference Material (SRM) 972, “Vitamin D in Human Serum,” represents a first step toward standardization of vitamin D testing.

From the limited research I've done on the topic of interpreting 25(OH)D results, the lower category where Deficient is less than 20 ng/ml, (50 nmol/L) and Insufficient is defined as 20-30 ng/mL,.  It appears these categories are based on epidemiological studies of bone malformation in children (rickets) and bone weakness, softness, or fracture in adults (osteomalacia) relative to vitamin D3 intake.  It also appears the "Normal" reference range of 30-100 ng/mL is based on population samples of "Normal" people… 

Unfortunately, that begs the question…  Which population of "Normal" people?  A population sample from Southern California or Arizona can have a "Normal" reference range that will vary significantly from a population sample from Massachusetts or Main simply due to the difference in available incident UV-B in sunlight and lifestyle.

Now for the good news…  There are a growing number of vitamin D3 experts like doctors Heaney, Garland, Vieth, Cannell, Hollis and Holick who are trying to bring about a better understanding of vitamin D3 testing, dosing, deficiency and the pharmacokinetics of vitamin D3.  More importantly, how best to treat vitamin D3 deficiency, and how to interpret lab tests for 25(OH)D in concert with related lab tests for calcium, magnesium, phosphorus and parathyroid hormone (PTH). 

Google any of the names of any of the above along with "vitamin D" and you'll find the results from a number of studies conducted over the last 10 years with some very compelling conclusions that support higher doses of vitamin D3 and the safety of higher concentrations of 25(OH)D.

It's no secret that I favor the use of safer and more natural non-invasive methods of controlling our disorder as opposed to the very powerful prescription medications with all their side effects.  That's why I've spent over five years explaining why oxygen therapy at flow rates that support hyperventilation is safe and so much more effective than oxygen therapy at the lower flow rates.

What I've been trying to do over the last year is try to establish a causal link between our cluster headache disorder and a vitamin D3 deficiency…  At this point, thanks to well over 150 CH'ers here at CH.com and another group of CH'ers at ClusterBusters…  that causal link had gone well past being anecdotal…  It's very real.

The next challenge has been to try to establish the 25(OH)D concentration threshold where most of the CH'ers who responded to the anti-inflammatory regimen either experienced a significant reduction in the frequency and severity of their CH or went pain free.  So far CH'ers who have had this lab test while still experiencing active CH have mostly seen their results come back at < 30 ng/mL, (75 nmol/L), but a few have tested as high as 42 ng/mL, (105 nmol/L) 25(OH)D while still experiencing active CH.

The lower threshold for CH'ers who started the anti-inflammatory regimen and experienced a favorable CH response to this regimen with vitamin D3 at 10,000 IU/day with a significant (>60%) reduction in the frequency and severity of their CH, appears to be at a 25(OH)D concentration of ≥ 60 ng/mL, (150 nmol/L). 

However, having said that, there have been a few chronic CH'ers, previously diagnosed as intractable to all the mainstream preventatives and abortives except for oxygen therapy at flow rates that support hyperventilation. who took much longer to experience a favorable response to this regimen and their 25(OH)D concentration has tested > 100 ng/mL. 

Given the data collected so far, the optimum target therapeutic range for 25(OH)D concentration to be free CH pain or at least significantly a reduced number of CH that require only a few minutes of oxygen when they do occur…  appears to be 60-100 ng/mL, (150-250 nmol/L) as shown in the following chart.

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Enough for now…  Take care and please keep us posted.

V/R, Batch


Title: Re: 123 Days PF And I Think I know Why
Post by Callico on Mar 13th, 2012 at 11:48pm
It is a little soon to draw any real conclusions, but following my Drs appt of last Monday I started slipping in an extra 5,000 IU of Vit D bringing me up to 15,000 units (without telling the wife).  Thursday and Fri were much improved over what I have been experiencing for the last 7 weeks, but I can't say for sure that my high cycle ended.  However, Sat I had only one hit of about a k4 and Sun and Mon were basically PF.  I came down with a bad cold over the weekend and Mon was in bed all day and basically didn't eat, so I didn't take my meds either, including the vitamins.  Today, Tues, I got hit twice, about a K4-5.  Time will tell, and it may be that as with every other methodology I've tried I get good results for a couple of months and it is back, but I am encouraged.

One reason I have not been much of a supporter around here the last year or so has been that I've just gotten to the place I couldn't handle it any more.  I came around for the support and to see what was happening with people and to cheer for others who were having successes, but I just didn't have it in me any more to be the kind of support I used to like to be.  I can't remember the last time I went on the introductions page, just because I can't handle all the newbies coming in with all that they need.  Sometimes the well just runs dry.

I said all of that simply to say this.  I am so grateful for those of you who have been involved in this work, in the O2 work, in ClusterBusters, and the Testosterone project.  You have kept hope alive, even when I didn't have any to give out to others.  I thank you from the bottom of my heart.

Jerry

Title: Re: 123 Days PF And I Think I know Why
Post by Joe-P on Mar 14th, 2012 at 11:57am
Batch, thanks for your initiative and motivation for researching these data. 

Is there any indication that taking only vit D supplements would succeed in interupting the CH cycle? 

Title: Re: 123 Days PF And I Think I know Why
Post by Callico on Mar 14th, 2012 at 3:22pm
Joe, I'll not speak for Batch, but I know you will need to supplement calcium or the Vit D will strip it from your bones. 

Jerry

Title: Re: 123 Days PF And I Think I know Why
Post by Joe-P on Mar 15th, 2012 at 6:59am
I didn't know that and it is good to know.  I was wondering about taking Vit D only, because the fish oil doesn't agree with me.  Thanks for providing the info. 

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 15th, 2012 at 2:19pm
Hey Jerry,

I suspect by now you've had a few less CH as the regimen starts to take hold...  Bumping the vitamin D3 dose up to 15,000 IU/day should be sufficient to speed things up without any worry about vitamin D3 intoxication. 15,000 IU/day is still at the low end of the therapeutic scale for vitamin D3.

I just finished reading a study of 40 patients suffering from relapsing MS and they were taking 40,000 IU/day vitamin D3 and 1,000 mg/day calcium for six months before dropping back to 10,000 IU/day.  No evidence of vitamin D3 intoxication...

Joe, in response to your question...  there's every reason to suspect taking just the vitamin D3 will work to prevent CH...  The down side of doing so is the potential for loss of bone density over time... 

Vitamin D3 affects calcium homeostasis... It pulls calcium from the gut and pushes it into the blood stream...  If sufficient calcium is not available in the gut, calcium homeostasis will pull it from the bones...

As calcium is one of the most important minerals needed for a multitude of bodily functions, our bodies have sophisticated mechanisms to control blood calcium concentrations in a very narrow range.

The overall process is called homeostasis and hormonal control of calcium homeostasis requires parathyroid hormone (PTH), 1,25-dihydroxy Vitamin D3 (Vitamin D3), and Calcitonin.

Taking 500 to 1,000 mg/day calcium won't hurt anything and it provides a good insurance against bone loss.  If you have problems taking calcium supplements, there are plenty of food types you can eat with high calcium content that would bring your total daily calcium intake up to 500 mg/day.

It's also best to take the cofactor minerals, magnesium, zinc, and boron as they enhance the process of metabolizing vitamin D3 into 25(OH)D and on to it's active hormonal form.

The best thing to do is talk with your doctor and have him order up lab tests for 25(OH)D, calcium, magnesium and PTH after you've been on this regimen for 30 to 90 days. 

The optimum therapeutic range for 25(OH)D where most CH'ers experienced relief from their CH is a concentration of 60-90 ng/mL.  Having said that, I've seen lab results from a few Chronic CH'ers who didn't respond until their 25(OH)D reached 110 ng/mL.

Although 110 ng/mL is above the normal reference range for 25(OH)D, it is still well below the lower threshold for vitamin D3 intoxication at 200 ng/mL.   At 200 ng/mL 25(OH)D, calcium homeostasis goes out of whack with elevated serum calcium and lots of calcium pumped over the side in urine...  However, that would take over 40,000 IU/day vitamin D3 for most of us...

In order to reach the obvious goal of the anti-inflammatory regimen and prevent CH, we need to find the lowest level of 25(OH)D that keeps us pain free then continue to take whatever dose of vitamin D3 that can maintain that level.   Again that would be a serum 25(OH)D concentration of 60 to 90 ng/mL and the best available response data indicates we would need to take between 5,000 to 10,000 IU/day to maintain that concentration of 25(OH)D.

This is why it's wise to work with your PCP to get a lab test as soon as you experience a favorable response to have your 25(OH)D concentration measured. At that point you can lower your vitamin D3 dose by 5,000 I.U. and see what happens. 

If you're still pain free after 30 days, get another lab test for 25(OH)D.  If your CH return, and I've had this happen, just bump the dose back up by 5,000 I.U.

Hope this helps.

Take care,

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Joe-P on Mar 15th, 2012 at 3:04pm
Thanks for answering.  The biochemistry I have seen here is always fascinating.  I usually am able to prevent my cycles using melatonin, nortriptyline, and cyproheptadine (2x day), but 2 of them are pharmaceuticals and I'd prefer more natural ways.  Thanks again for replying.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 15th, 2012 at 7:50pm
Joe,

I'm with you...  Giving our bodies the supplements and micronutrients they need to make us healthy is a lot better than taking invasive medications we think will make us feel better... but all to frequently don't without a some undesirable side effects.

Take care and hang in there.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Callico on Mar 17th, 2012 at 1:38am
I think it is working.  However, it appears to this uneducated and ignorant mind that it is not killing the CH, but just keeping it at bay.  I don't drink, so I didn't give it the beer test, but I gave it the Bacon test tonight.  WRONG move!  About 30 mins later (after I had thought I had beat it) here came a K7, and I forgot I had an energy drink in my pocket.  I let it get a good hold before trying to kill it with the 5hr Energy and it only kicked it down to about a K4 that lasted for over 3 hours.  Memo to self:  No more Bacon! >:( :'(  Maybe I'll bump it up to 20k IU and give it another try. :D  Of all things, I've missed Bacon for the last 10+ years.

Jerry

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 17th, 2012 at 5:39pm
Hey Jerry,

Thanks for the update.  You're spot on by saying this regimen keeps CH at bay...  I've done enough stress tests of my 25(OH)D reserves by stopping this regimen cold turkey to come to the same conclusion. 

I tried the first such test last November after 13 months of being pain free and was rewarded with a classic Kip-7 eight days after I stopped taking the regimen. 

I repeated the stress test two more times over the following two months and both times it only took 24 to 36 hours without vitamin D3 for the beast to come a knocking...  My conclusion is I'm still a chronic CH'er even though I'm pain free, and that as long as I maintain a therapeutic level of 25(OH)D, I'll remain pain free.  For me that appears to require 10,000 IU/day vitamin D3.

I think you're presently at the tipping point as I call it, where you're almost but not quite in the safe green zone with a high enough serum concentration of 25(OH)D to completely prevent your CH. 

Try to snag another lab test for 25(OH)D sometime over the next week to 10 days so you'll know what your threshold is to remain CH PF for future reference...

I've never heard of the "Bacon Test" for CH as a trigger, but then why not?  It even makes sense.  The extra sodium chloride in bacon could easily cause shifts in serum calcium levels and the sodium nitrite used in the bacon curing process could also be a culprit in nitric oxide (NO) production.

I suspect that after a month or so being pain free on this regimen, you'll be able to do the bacon test again with pleasant results.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Plakatboy on Mar 19th, 2012 at 2:50am
Started on the regimen on the 2nd day of this cycle. Now is the 7th day.

Getting low KIPs headache during daytime. Throughout the day I will experience the breakout feeling which subsides after a while.

Nighttime is a different story. 30 to 60 mins after sleeping, I will be awaken by the breakout feeling and if un medicated, developed into a KIP 5 to 6. The HA recurs every hour after sleeping.

Not sure but the regimen seems to help with day attacks but is not doing much to the frequency of night time attacks.

Anyone facing the same situation? Any suggestion?

Title: Re: 123 Days PF And I Think I know Why
Post by wildhaus on Mar 19th, 2012 at 7:27am
Hi,
 
I have been on this regimen for just over 6 months. My doctors tell me that amount of time rules out any possible placebo effect…

I suffer from the extreme sort of CH and was diagnosed as intractable CCH.  Without medication I averaged up to 8 (and more) episodes a day at an average high pain level of kip 8 and an overall average pain level of Kip 6. The CH last 45 to 50 min without abortive treatment and are accompanied with all the classic CH symptoms we know so well.

I have undergone treatment with almost all the schoolbook standards of care preventative medications for CH, and was a guinea pig to some new and "innovative" treatments. 

My candid assessment of all the CH preventative medications follows:  None were really effective.  Some provided limited relief for a while others did not.  The few that were relatively effective with moderate to good effectiveness in preventing my CH all carried unacceptable side effects. 

When it was clear I was essentially intractable to the standard CH preventative medications, my neurologists suggested blockades…   The occipital nerve block with betamethasone provided a week to 10 days relief but nearly destroyed my endocrine system and it triggered a rapid bone mineral density loss.

One of the more "innovative" treatments included the implantation of a bi-lateral ONS (Occipital Nerve Stimulator). 

The ONS implant required months of "tuning" to load the most effective stimulation patterns, but even then I became a slave to the ONS as it required constant attention during the day to provide what I consider a moderately effective method of preventing painful attacks.  During the night while sleeping it was useless. By the time I woke up the pain was beyond control with ONS.  It has since been surgically removed as its overall day and night effectiveness was far less than I had expected.
 
None of the treatments provided a sustainable magic bullet, or gave me a full (even limited) success in preventing my CH…
 
The only treatment I have not tried is the CB alternative.  It's not that I don’t think it could give me some relief, it is just not compatible to my job requirements,

I do need my job… 
 
All treatments had one or more undesirable side effects, that made the risk-reward ratio unfavorable so the choice to continue or discontinue the treatment easy.
 
The anti-inflammatory treatment (for me) is not a magic bullet.

BUT

I am under very close control and monitoring by doctors in the endocrinology department at KSSG (Kantonspital St. Gallen Switzerland). Even with this disciplined approach, I have the flexibility of adjusting doses of the “ingredients” and this has allowed me to achieve a steady (at the moment) 80-85% reduction in the frequency of my CH episodes.  It has also resulted in a significant (over 50%) reduction in the pain level of the remaining episodes… nothing over Kip 5 anymore.

I achieve all of the above without any apparent undesirable side effects. On the contrary, my bone density (monitored as well) is improving and my current overall sense of well-being is very good.
There is still the last bad habit – smoking - a habit I should give up and I might feel even more energetic…  but then, one beast at a time…
 
To all who haven't tried the anti-inflammatory treatment and would like to give it a chance, it can take time (in some cases) to achieve significant results.  For me it took over 4 months and a lot of discipline. 

However, the flexibility of dosing the “ingredients” to achieve the current results, and knowing there is room for better results makes the continuous disciplined work of adjusting my anti-inflammatory treatment to the situation and the lab tests every three months well worth the effort.
 
The anti-inflammatory treatment is giving us (in conjunction with high Flow O2 abortive) a substantial weapon to battle our common malady with substantial results (over 70%) and that is more than we achieve (statistically) than most of the standard of care treatments, without any (seemingly) adverse side effects, or any unwelcome legal issues.
 
The cost of this regimen is negligible in comparison to any of the current standard of care meds. It is affordable to any person, even without health insurance.  My cost is just under 50 cents (US) a day (and I buy the supplements over the internet and they are flown from the USA to Switzerland via Fed Ex or DHL).  It is the cost (more or less) of one cigarette (in Switzerland), and way less than the cost of a beer in Switzerland !!!
 
When it's all said and done, I know I still suffer from cluster headache !!!  However, I'm no longer intractable and that by itself gives me a whole new outlook on life. 

The anti-inflammatory regimen gives me a confident level of control in preventing my CH and the few that do leak through are easily controlled with oxygen therapy at flow rates that support hyperventilation. 

The bottom line is I now enjoy a quality of life that lets me function effectively at work, at home with my family, and while doing things I enjoy like skiing with my sons and flying a sail plane over the Alps.

If you haven't already tried it, I urge as many of you to give this alternative a try, and even if you have tried it for one or two weeks and given up…  try it again…  It can take time to be effective for some of us, particularly the chronic types.  In some cases like mine, it can take several weeks, but the wait is worth it.   

It also takes a disciplined approach with lab tests and patience. There are no apparent risks and it is statistically a very cost effective preventative you can live with for as long as it takes…  or longer!


Michael


(copy - Pete)

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 19th, 2012 at 7:29am
Plakatboy,

Thanks for the feedback and hang in there...  From the data collected so far, the average time for an episodic CH'er to respond to this regimen with a decrease in the frequency and severity of their CH is 8 days, but some have taken much longer. 

Have you seen your PCP for the lab test for 25(OH)D?  Nearly all CH'ers with active CH who gone in for this test have have come back with 25(OH)D concentrations lower than 30 ng/mL and there have been a few who tested as high as 42 ng/mL. 

CH'ers who have gone pain free on this regimen and then had this test have all had their results come back at >60 ng/mL.

Several studies have shown it can take as long as 90 days for some people to elevate their 25(OH)D from 30 to 60 ng/mL at a vitamin D3 dose of 10,000 IU/day.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by Plakatboy on Mar 20th, 2012 at 6:21pm
Hi batch,

Thanks for the reply.

This cycle I'm using the D3 regimen with red bull and cafergot as abortives. I am not sure if i'm taking too much caffeine cos I am going thru 4 to 5 night attack with the last one especially bad at KIP8-9. The pain continued for the next 90mins after the cluster pain subsides , though it is throbbing in nature instead of constant.

I am not sure if I am having rebounds or that you are paying back for lighter intensity during the day.  cos this has never happen before . I have mainly aborted attacks with red bull so far and is well within the limit for cafergot.

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 21st, 2012 at 10:55pm
Plakatboy,

The most effective abortive is oxygen therapy at flow rates that support hyperventilation.  See your PCP or neurologist for a prescription for oxygen therapy. 

Ask for 15 to 25 liter/minute oxygen flow rate, but be prepared for possible push back.  At 4 to 5 hits a night you're also going to need at least three of the larger M-size medical oxygen cylinders for a one month supply if your insurance will cover it.  The smaller E-size oxygen cylinders are only good for three aborts...  The M-size should be good for 20 to 30 aborts depending on the flow rate.

If you don't have medical insurance, you can always go the Welder's O2 route.  Harbor Freight Tools caries the oxygen and you can also get one of their welder's O2 regulators for $35.   

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These puppies have enough flow rate to blow your shirt tail out.  You'll just need to do a little trial and error to find the best regulated pressure for the fastest abort.   They also have the GCG-540 cylinder attach fitting that will work with the larger medical oxygen cylinders (M/H/K) and all welding O2 cylinders.

Accept a lower flow rate if that is all that's offered as you can always buy a good 25 liter/minute regulator for less than $50.  You'll also need a good mask and the $27.50 O2PTIMASK™ kit available at the CH.com store at the left is the best there is.

Take care and please keep us posted.

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by -dvb- on Mar 22nd, 2012 at 5:31pm
Hello,

  New-ish here. Started the D3 regimen Feb. 29th. Noticed a reduction in the severity of CHs about 4 days later, and have been reletively PF for the past week and a half (maybe the cycle is ending but I'm not stopping the D3 to find out if it is or isn't). Have yet to get the 25(OH)D test, but hope to soon. Was only formally diagnosed with CH yesterday, but a family history led me here (also having to wait over a month for an appt. with a Neuro). Printed out Batch's post #637 and gave it the doc...he seemed somewhat receptive to it and asked if he could keep it (of course, why do you think I printed it out for YOU).

Just wanted to say thank you to Batch and everyone else at this site. I hope to be able to provide with you more info soon..plan to wait the full month prior to filling out the survey.

Thanks,

-d

Title: Re: 123 Days PF And I Think I know Why
Post by Batch on Mar 23rd, 2012 at 11:25am
Hey DVB,

Thanks for the feedback and sharing the news about the anti-inflammatory with your doctor. 

Who knows, if this keeps up, more CH'ers and their doctors will discover how well this regimen really works for 20 cents a day...  We'll know just how many CH'ers when the big pharma's and their lobbying arm come gunning for me...  Wait until the migraineurs discover how well this regimen works for them.

Take care and please keep us posted

V/R, Batch

Title: Re: 123 Days PF And I Think I know Why
Post by -dvb- on Mar 23rd, 2012 a