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Batch

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Re: 123 Days PF And I Think I know Why
Reply #350 - Sep 1^st, 2011 at 3:20pm

Rune,

Awesome post! It carries far more impact on readers who have yet to give the anti-inflammatory regimen a try to prevent their cluster headaches than anything I can say...

You've set the bar for the rest of us with your persistence, your own research on vitamin D3 dosing and testing for the vitamin D3 metabolite therapeutic and maintenance levels. Well Done!

Take care,

V/R, Batch

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jhammer

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Re: 123 Days PF And I Think I know Why
Reply #351 - Sep 2^nd, 2011 at 9:30am

Day two: 2x5000iu D3, 2x1000mg fish oil, 2xB12 lozenges (for carpel and ulnar tunnel syndrome, forgot to mention these in my post yesterday).

No attacks at all, just a tiny little shadow of a shadow. I did wake up at the usual times but not because of the pain. And I was able to fall right back to sleep again.

I confess, I only read the first and last couple pages of this thread...WHY does this work? Is it the vitamin deficiency causing the headaches?

Thanks a ton for this information...maybe I can cancel my appt with the neuro Wink

~Jake

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« Last Edit: Sep 2^nd, 2011 at 9:31am by jhammer »

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Zeitgeist

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Re: 123 Days PF And I Think I know Why
Reply #352 - Sep 2^nd, 2011 at 11:49am

Jake, good news! But do not forget calcium and magnesium. Both are very important co-factors for vitamin D3. Intake of 10.000 IU D3 without calcium might be dangerous. The general effect of D3 is sharply reduced without magnesium. 500mg of both is advisable. 15-25mg of Zinc too. Batch covers this in several posts in this thread.

See also Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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(VitaminDCouncil.org) and Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

(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.

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« Last Edit: Sep 2^nd, 2011 at 12:00pm by Zeitgeist »

-zg

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jhammer CH.com Veteran Offline This is pure AGONY!!! Posts: 186 x1\|Pittsburgh\|USA\|usa\|447\|126\| Gender:	Re: 123 Days PF And I Think I know Why Reply #353 - 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.
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nhs CH.com Junior Offline I Love CH.com! Posts: 63	Re: 123 Days PF And I Think I know Why Reply #354 - Sep 3^rd, 2011 at 11:15am Hi When taking vitamin-D3 there is no need for taking calcium because the calcium from the food is absorbed more easy. I have been cluster free for allmost 3 years, and take 5000 IU vitamin-D3, 1000 mg Omega3, 500 Mg Magnesium, Zink and 3 mg Boron. No need for calcium here. nhs
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jhammer

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Re: 123 Days PF And I Think I know Why
Reply #355 - Sep 3^rd, 2011 at 5:01pm

Day 3 was not so good. I continued with the 2x d3 @ 5000iu. 2x 1000mg fish oil. I added 1x 500mg calcium 1x 500mg magnesium and 1x 50mg zinc. I also continued with the b12 lozenge.

I awoke with pretty intense shadows which evolved into about a kip6-7 cluster. It tapered down to about a 4 and stayed there for several hours.

I'm committed to it now though, I'll see how today goes. Maybe for this evenings dose I'll skip the calcium.

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Re: 123 Days PF And I Think I know Why
Reply #356 - Sep 4^th, 2011 at 3:23am

Posted in a thread in the general forum but it's probably more suitable for this thread.

I've been splitting up my D3 dosage between morning and afternoon. Would it be better if I took the whole 10,000 IU in one dose in the morning?

This is my current regimen:

Morning: 5,000 IU D3, 1000 mg Fish Oil, 300 mg Calcium Citrate (w/ 150 mg Mg, 7.5 mg Zn)

Afternoon: 5,000 IU D3, 1000 mg Fish Oil, 300 mg Calcium Citrate (w/ 150 mg Mg, 7.5 mg Zn)

Evening: 1000 mg Fish Oil

Does this look about right or am I missing something?

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Zeitgeist

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Re: 123 Days PF And I Think I know Why
Reply #357 - Sep 4^th, 2011 at 10:16am

slacker032 - This is my impression

D3: Important to take with food (some fat), but as D3 is stored in the body, it is not important when.

Mg: Best to split as Mg is consumed after 6-8 hrs
Zn: I don't know.
Ca: Often recommended to take in the evening
Omega 3: I don't know.

As for whether Ca is necessary or not: As far as I understand it depends on what food one eats, amount of milk etc.

Apparently we need to get more info. on this. Googling is not necessarily helpful as much D3 information is very bone-/rickets-fixated and based on "old D3 truths".

However, vitamin K2 is important as it helps directing Ca to the bones/teeth and away from the blood vessels. VitaminDCouncil and others also mention Boron and small amounts of Vitamin A as D3 co-factors.

I have begun splitting, but the first 60 days I consumed the entire cocktail for breakfast with very good effect.

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-zg

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slacker032 CH.com Old Timer Offline Posts: 325 Los Angeles, CA Gender:	Re: 123 Days PF And I Think I know Why Reply #358 - Sep 4^th, 2011 at 3:52pm Thanks Zeitgeist. Great info!
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coach_bill

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Re: 123 Days PF And I Think I know Why
Reply #359 - Sep 4^th, 2011 at 11:31pm

Thanks Batch,

It's clear that i'm a Seed user and Shroom user (when was available). Last march was the last dose of any kind. I use mag supplement pills along with cal,d3 1000iu. Ive been reading this post and was wondering if ant other clusterbusters have tried this with success.

I'm not far from the recipe with the mag,cal,d3 i take and would be easy to start.

Thanks, Coach Bill

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boy i cant wait till it's my turn to give him a headache. paybacks a bitch

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #360 - Sep 5^th, 2011 at 2:15am Coach Bill, Seven out of ten Busters reported a favorable response. Take care, V/R, Batch
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Pinkfloyd CH.com Hall of Famer Offline comfortably numb Posts: 1626 x0\|\|USA\|\|\|\|IL,Illinois Gender:	Re: 123 Days PF And I Think I know Why Reply #361 - Sep 6^th, 2011 at 1:05am Actually, only three "busters" completed a short survey and one out of three reported positive results. Bob
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slacker032 CH.com Old Timer Offline Posts: 325 Los Angeles, CA Gender:	Re: 123 Days PF And I Think I know Why Reply #362 - Sep 6^th, 2011 at 1:15am 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.
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matt25holland CH.com Newbie Offline I Love CH.com! Posts: 11	Re: 123 Days PF And I Think I know Why Reply #363 - Sep 6^th, 2011 at 2:11am going off to have my blood drawn in half an hour to check my vitamine D levels, will get the results back in a week, will keep you guys posted!
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #364 - Sep 6^th, 2011 at 5:04pm

Bob,

I read the three responses to your survey… their results are included in the following tally.

The seven out of ten figure came from the thread titled: "Dramatic vit D3 megadose success stories at ch.com" at the following link: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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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

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jhammer

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Re: 123 Days PF And I Think I know Why
Reply #365 - Sep 7^th, 2011 at 12:12pm

I have some catching up to do...Same regimen (forgot to mention that I've been splitting it between morning and evening). Day 4 was pretty good, just some minor shadows, day 5 was great all day until I had some dessert my Uncle made. Turns out the strawberries were soaked in some sort of liquor...DOH! However the attack did not last long at all.

Since then, nothing but some minor shadows every now and then. I have added the Clonzepam back in (1/2 of a 1mg tablet 2 hours before bed). I doesn't seem to hurt anything and it allows me to sleep all night long. If I take it any later than I run the risk of being late to work Wink

. 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

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matt25holland CH.com Newbie Offline I Love CH.com! Posts: 11	Re: 123 Days PF And I Think I know Why Reply #366 - Sep 8^th, 2011 at 7:34am hiya jake, have you done any blood work done before you started this regimen?
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jhammer

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Re: 123 Days PF And I Think I know Why
Reply #367 - Sep 9^th, 2011 at 2:51pm

No, but I think I'll request it at my appt. next week. Aside from vitamin D3 I'll ask for vitamin B levels. I understand that your body can only store 4-5 years of B12...I had my Gall Bladder removed about 4 years ago. Supposedly that could cause some absorption issues. I'm wondering if there is a more comprehensive test for all vitamins that could be done...

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #368 - Sep 10^th, 2011 at 12:18pm

Jhammer,

When you ask for the blood test for 25-Hydroxyvitamin D, also called 25(OH)D, you should also ask for a Chemistry Panel plus complete blood count (CBC). That way you'll have info on your electrolytes, calcium, and magnesium levels. This is important as it will tell you if you need to add more calcium and or magnesium to your daily supplements.

Take care,

V/R, Batch

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1961mom CH.com Junior Offline I Love CH.com! Posts: 39 Eugene, Or Gender:	Re: 123 Days PF And I Think I know Why Reply #369 - Sep 11^th, 2011 at 5:34pm I'm a little scared of the calcium because I get kidney stones (though I'd rather pass 100 of those before getting another cluster). I'll give it a go though, thanks for the tips.... Would the vitamin k2 be helpful for this?
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1961mom CH.com Junior Offline I Love CH.com! Posts: 39 Eugene, Or Gender:	Re: 123 Days PF And I Think I know Why Reply #370 - Sep 11^th, 2011 at 5:35pm 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
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Re: 123 Days PF And I Think I know Why
Reply #371 - Sep 12^th, 2011 at 2:37pm

after a couple of weeks of doing this I haven't had a really bad hit in the last 4 days and none, zero at night. Oddly I still wake up at the times I was getting them but no pain I can go back to sleep. A few minor hits during the day that a Red Bull and a few deep breaths in 5 minutes gone. I also haven't had any of those horrible day long shadows that just wear me out.

I also know that it's not just the end of my cycle, right now I'd be at the high point looking at a least a month to go.

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #372 - Sep 13^th, 2011 at 8:21pm Hey Bhb, Thanks for the feedback and good on you for staying with this regimen long enough to give it time to work. Wonderful feeling isn't it? Take care, V/R, Batch
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jhammer

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Re: 123 Days PF And I Think I know Why
Reply #373 - Sep 14^th, 2011 at 2:37am

I had my neurological appt. And was somewhat less than impressed with the dr's response to my request for blood work. He said that 'no one does that', regarding checking vitamin levels, etc...

I go to a research hospital to see the neuro. Everytime I visit he has some medical students examine me first and then he comes in and goes over their findings with me. This time there was a well informed student who seemed to know quite a bit about the vitamins and minerals I was taking. He also mentioned that they were most likely responsible for my arrhythmia acting up since magnesium is one of the 'ions' that causes the heart to actually beat. So I'll knock that one down a bit. He also suggested that I take my recipe to my PCP and ask them for some advice 'cause the neuro wouldn't be interested...he was obviously right.

The good news is that I haven't gotten hit by the beast in over a week. The Dr. Wanted to put me on Depakote again but I told him 'no thanks, I'll stick with what I'm doing now'

I asked for some abortive meds in case I come across some malicious strawberries again so he prescribed immitrex injections and oxygen later if that doesn't work.

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Mike NZ

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Re: 123 Days PF And I Think I know Why
Reply #374 - Sep 14^th, 2011 at 2:54am

jhammer wrote on Sep 14^th, 2011 at 2:37am:

I had my neurological appt. And was somewhat less than impressed with the dr's response to my request for blood work. He said that 'no one does that', regarding checking vitamin levels, etc...

So ask why not? Then ask again...

With the interest from one of the medical students, get hold of their details and work with them. Feed them with information and they will no doubt be eager to learn as much as possible.

jhammer wrote on Sep 14^th, 2011 at 2:37am:

he prescribed immitrex injections and oxygen later if that doesn't work.

Get oxygen now.

It's a life changer in being able to kill off CHs quickly, cheaply and with none of the side effects from imitrex.

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