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

Sounds promising, Pete. Thanks, and keep us posted! Blessings. lance

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

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 10^th, 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.

Great thread,Thanks...

Mike NZ wrote on Dec 10^th, 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.

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.

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.

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

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.

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

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

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

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

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 or END PRINTPAGE

Hiya again, Niels. 

Best,

George

Little feller is persistent.

        Potter

He may have gotten a little bit of corroboration.

Jerry

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

Best Eilif

What is that definition of insanity again? Trying the same thing over and over and always expecting a different result - yeah, that's it.

Brew wrote on Dec 29^th, 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!

Quote:

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

Time to give it a rest Neils.  ::)

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

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

I have Omega 3  - Salmon Oil is that the same. 

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

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

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 :)

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.

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

batch would you say this needs to be taken alone or can it be coupled with prescription preventatives such as lithium verapamil etc?

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

Quote:

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

Which makes Joyce a happy girl.  ;)

Say hello to her for us.

and some really nice looking firewood it is,,im jealous

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

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

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

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

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

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?

TarHeel-blues wrote on Feb 7^th, 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

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

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

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).

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.

Sorry, I meant to also post the link to the above journal article:
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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 :)

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

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

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

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.

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

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.

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

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

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

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

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

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

Interesting study, DG. Thanks for sharing it!

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

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                           

Bump..

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

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

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

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

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.

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!

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!

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

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.

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.

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

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

---

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.

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

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!

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.

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

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 :)

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

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 :)

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!

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!

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.

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.

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

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

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

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  >:(

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.

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

Hi Batch

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

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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

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.  :)

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.

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.

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

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

Best wishes for PF, Lance!

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

THAT GRAPH IS BEAUTIFUL, BATCH, BRAVO!
What did you use to measure the pH? Litmus paper? If so what kind?
-Gary

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

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.

[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

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

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.

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

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

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.

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.

Going to the supplement store :)

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

Thanks Batch! :)
xoxo

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

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.............

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

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

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

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

skeevedout wrote on Mar 24^th, 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.

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.

oxyrunner wrote on Mar 24^th, 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]

Same, same as last night. Today I will add calcium citrate, magnesium and zinc........

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]

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.

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.

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.

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

That helps quite a bit, Pete. I've been paying too much for D3.

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.

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.

Hi Julie

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

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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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

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.

Pete!

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

Michael

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

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

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

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?

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.

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

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

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.

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.

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

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

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

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

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.

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

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

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.

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

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

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.

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

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

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

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...

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

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

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

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.  ;)

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.

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!!!!!!       

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.

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.

My vitamin D3 is coming from caplets.

Can you give me brand name?

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

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!

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.

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

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

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:

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

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.

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

Hope this helps.

Take care,

V/R, Batch

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

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

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

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

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!

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

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!

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

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

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

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 or END 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

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.

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.

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.

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

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

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

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!!

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

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.

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 or END 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

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).

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

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

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

Hi

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

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Best Niels

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

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

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

Powermonkey wrote on Apr 8^th, 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

Ricardo wrote on May 2^nd, 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

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 :(

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

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

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

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

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...

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

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!

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

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

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

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.

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

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.

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.  :)

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

Bobb,


alleyoop wrote on May 14^th, 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 14^th, 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

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

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

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

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

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

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

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 or END 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

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:

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

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

Hope this helps.

Take care,

V/R, Batch

---

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:

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

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

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

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

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

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

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...

Hey Amanda,

Good question.

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

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

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

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!

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

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. :)

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 

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

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

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

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

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. 

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. 

[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

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

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

Guiseppi wrote on Jun 28^th, 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).

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 3^rd, 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.  :)

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).

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

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?

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

thanks Batch.

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...

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

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.

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

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

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

sandie99 wrote on Jul 14^th, 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

sandie99 wrote on Jul 14^th, 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

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

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-)

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

Thanks Barry & Joe! :)

Btw, I don't know how to blush... ;D

PF days to us all,
Sanna

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

Hope this helps.

Take care,

V/R, Batch

---

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.

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

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.

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 or END 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

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

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

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

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

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

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

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!

You're awfully brave to do the booze test one day after a pf day. Most usually wait two weeks.

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

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

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

Wow Zeit, that's fantastic news. This cocktail is really starting to get people's attention!!! :o

Joe

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

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!

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.

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

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

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

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

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....

ANOTHER PF night! Woo hoo. No shadows today..nothing.
I feel amazing :)
xoxo

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

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

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.

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

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

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...

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

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

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

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?

Mike NZ wrote on Aug 8^th, 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

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

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.

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.  ;)

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

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.

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

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.

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

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.

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

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... :)

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 or END 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.

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!

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

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.

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.

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.

Thank you, Brew. :)

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

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

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

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

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

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.

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.

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

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.

Zeitgeist wrote on Aug 22^nd, 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

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

I don't like lemonade.

Will orange juice, tangerine juice, and/or grapefruit juice work?

It is my understanding that limeade is an acceptable substitute.

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

LasVegas wrote on Aug 23^rd, 2011 at 10:38pm:

I don't like lemonade. Will orange juice, tangerine juice, and/or grapefruit juice work?

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.

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. ;)

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.

Dixie Angel wrote on Aug 24^th, 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?

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 or END 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

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]

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

godsjoy777 wrote on Aug 26^th, 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

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

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.

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

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?

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

OK, will do, thanks Batch :)

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?

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 or END 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

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!

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

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

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 or END PRINTPAGE (VitaminDCouncil.org) and START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END 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.

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.

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

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.

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?

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.

Thanks Zeitgeist.  Great info!

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

Coach Bill,

Seven out of ten Busters reported a favorable response.

Take care,

V/R, Batch

Actually, only three "busters" completed a short survey and one out of three reported positive results.


Bob

Pinkfloyd wrote on Sep 6^th, 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.

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!

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 or END 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

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

hiya jake, have you done any blood work done before you started this regimen?

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...

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

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?

jhammer wrote on Sep 2^nd, 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 :)

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.

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