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123 Days PF And I Think I know Why (Read 164906 times)
Batch
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Re: 70 Days PF And I Think I know Why
Reply #25 - Jan 2nd, 2011 at 8:49am
 
Denise,

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

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

Take care,

V/R, Batch
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Re: 70 Days PF And I Think I know Why
Reply #26 - Jan 13th, 2011 at 1:58pm
 
Hi Batch......great read.

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

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 Smiley
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Re: 70 Days PF And I Think I know Why
Reply #27 - Jan 13th, 2011 at 5:28pm
 
I've increased my dosage of D3 to 9000 IU (from my usual 5000 IU) for the last 2 weeks or so, unfortunately no effect on me, still getting hits.
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« Last Edit: Jan 13th, 2011 at 5:28pm by akage »  
 
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Batch
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Re: 70 Days PF And I Think I know Why
Reply #28 - Jan 15th, 2011 at 2:56am
 
95 days and it swerkin...† We're all wired differently so it's not surprising this anti-inflammatory regimen may not work as well or at all with others...†

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

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

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In any case, I'm not complaining.

Take care,

V/R, Batch
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Re: 95 Days PF And I Think I know Why
Reply #29 - Feb 5th, 2011 at 6:56pm
 
batch would you say this needs to be taken alone or can it be coupled with prescription preventatives such as lithium verapamil etc?
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Batch
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Re: 95 Days PF And I Think I know Why
Reply #30 - Feb 6th, 2011 at 10:46am
 
THB,

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

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

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #31 - Feb 6th, 2011 at 11:16am
 
Quote:
...I'm feeling and acting like a kid again.

Which makes Joyce a happy girl.† Wink

Say hello to her for us.
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Re: 123 Days PF And I Think I know Why
Reply #32 - Feb 6th, 2011 at 1:24pm
 
and some really nice looking firewood it is,,im jealous
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #33 - Feb 6th, 2011 at 6:52pm
 
I've had Joyce on the same Omega 3 Fish Oil and vitamin D3 regimen since Christmas when she commented I was packing more wood... Roll Eyes† 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... Cheesy so the positive side effects of this regimen continue to multiply.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #34 - Feb 7th, 2011 at 2:58am
 
That's good news Batch.
I'm now 928 days or 2years 6 months.
This B3 sardine sanga's along with the magnesium/calcium may just yet prove worth while.

Cheers
Barry
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #35 - Feb 7th, 2011 at 3:37am
 
G'day Barry,

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

Take care and Cheers,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #36 - Feb 7th, 2011 at 9:45am
 
I took Batch's suggestion and started the same supplement regimen.† To that my M.D. suggested adding 1,000mg Taurine 3x per day, 3,000mg Glycine at bedtime daily, and daily doses of Resveratrol, and Selenium.† I found an interesting article on Glycine and its relationship with GABA (the major inhibitory neurotransmitter of the brain) here:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register I teach Anatomy & Physiology and am always interested in discovering new information.

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
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #37 - Feb 7th, 2011 at 1:07pm
 
Hey Glassman,

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

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

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

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

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

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

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

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

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

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

Hope this helps.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #38 - Feb 7th, 2011 at 2:32pm
 
i know its way to early yet but on my 2nd night of this regimen i slept all night with no hits,cant even remember the last time i did that.

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

why the heck after 10 yrs with the same neuro have none of this kinda stuff been suggested by him?
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Re: 123 Days PF And I Think I know Why
Reply #39 - Feb 7th, 2011 at 6:44pm
 
TarHeel-blues wrote on Feb 7th, 2011 at 2:32pm:
why the heck after 10 yrs with the same neuro have none of this kinda stuff been suggested by him?


Probably because he doesn't suffer like us.

I remember when I first started out on my run with magnesium a statement made by Helen (LeLimey) ďIf a cure is ever to be found for our condition it would come from this siteĒ 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 ďaround July 2008 was about that time that the Magnesium/Calcium supplements I was taking changed when the manufacturer added Vitamin D3 to the mixĒ 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.

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

Iíll never ever know if I never ever go. Wink

Cheers
Barry
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Re: 123 Days PF And I Think I know Why
Reply #40 - Feb 7th, 2011 at 8:01pm
 
Batch's regimen got me thru a shi$$y high cycle this last go round...when even 02 was failing me. No question in my mind there is something to it. On or off cycle I take a daily Fish oil, magnesium, zinc, calcium citrate with D, and a regular daily vitamin.

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

Joe
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Re: 123 Days PF And I Think I know Why
Reply #41 - Feb 7th, 2011 at 8:23pm
 
I have been tuned into this thread for some time and I am so happy you are getting relief Batch.

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

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


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Re: 123 Days PF And I Think I know Why
Reply #42 - Feb 8th, 2011 at 10:37am
 
I've noticed that when I'm in cycle, which is usually during the winter months, I have a strong craving to just stare at the blue sky on a bright sunny day (which we don't get all that often during the Central Ohio winters). At times I've sat in my car in a parking lot for up to two hours just looking at the sky (note: not directly at the sun!). On overcast days I sit in my plant room under the 400 watt grow light.† Though I'm not sure if there's an effect on the CH's, there's a definite and deep calming relief I feel during these "photosynthetic" moments.

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

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Re: 123 Days PF And I Think I know Why
Reply #43 - Feb 8th, 2011 at 11:57am
 
Out of curiosity, I did some research on effects of light stimulation and the optic pathways leading to the hypothalamus and related areas. Which lead me to the following.

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

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

Interesting, since more research is pointing to defects in the hypothalamus as the source of CH's, and peoples claims of help from vitamin D.
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Re: 123 Days PF And I Think I know Why
Reply #44 - Feb 8th, 2011 at 11:59am
 
Sorry, I meant to also post the link to the above journal article:
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Re: 123 Days PF And I Think I know Why
Reply #45 - Feb 8th, 2011 at 6:44pm
 
Quote:
I teach Anatomy & Physiology and am always interested in discovering new information.

Wished I knew what you know, and you had a feather in your hat. Wink
signed
Jealous Smiley
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Re: 123 Days PF And I Think I know Why
Reply #46 - Feb 9th, 2011 at 8:24pm
 
Hey THB,

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

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

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

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

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

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

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

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #47 - Feb 9th, 2011 at 9:09pm
 
well i went from 10-12 hits a day all in the k-7 to k-9 range most of them coming at night robbing me of any real sleep to 1 k-3ish hit in the last 3 days,,
ive gotten more sleep in the last 3 nights than ive gotten the last 3 months combined,,AND IT FEELS GREAT!!!

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

if you come up wih any more regimens ill gladly be your guinea pig
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Re: 123 Days PF And I Think I know Why
Reply #48 - Feb 10th, 2011 at 3:21am
 
That's the type of news that I love to hear, may it continue.
I have altered my regime to include D3 & dropped one of the Magnesium/Calcium/D3 tabs & included omega 3 so we shall see what happens.

Cheers
Barry
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Re: 123 Days PF And I Think I know Why
Reply #49 - Feb 15th, 2011 at 5:47pm
 
Jury's out but good results so far.
As a little background: Episodic and have been using RC seeds, O2, and caffiene. Since starting the seeds years ago the cyle is slow to develope and easily shut down for the most part. I was dosing every 3 days before staring and was able to extend to five days.
I added D3 and fish oil as described by Batch a week ago and stopped getting night hits right away. Energy boost is significant to the point of being almost to much at times.
I wouldn't soley depend on D3`and fish oil but it definetly seems to be helping the seed regime and sleeping is something to look forward to.
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