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Virrr

Vitamine D3

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Hello,

I'm Ivo 40 years  from The Netherlands and CH-er. Had Chronic (6-8 attacks a day) CH from my 18th till approx. 30th.
After that it went away for about 10 years but long story short, I'm here for a reason.

Started the D3 regime last saturday and initially responded verry good from day 1. CH went away (even could consume alcohol) unitll I saw my neurologist.
He told me he had heared about the vit. D3 but didn't believe it could actually work.
Also he told me that it is a fact that the placebo effect among headache patients (migraine and CH a like) is much higher than in other groups (like 40%).
But he also told me I probably could do no harm so if it helped I should keep taking it.

Unfortunately the CH came back, still taking the loading dose 50.000 IE a day. (day 7 now)
Not all the extra supplements are available in The Netherlands over the counter so my question is which of the other supplements are mandatory? 

Are there numbers available on how many people that have CH returning after starting the vit. D3 regime?

 

Thanks

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I started d-3 a few weeks ago it has worked I still get shadow type headaches but nothing so bad I believe its very important to do the magnesium and k-2 I would ask Batch he is the one who gave me the info and seems to be very knowledgeable on this 

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Hey Virrr,

Thank you for the feedback.  Having CH return after an initial pain free response to the anti-inflammatory regimen is not uncommon and easily fixed.  It happens to roughly 5% of CHers starting this regimen.  What has likely happened is you've burned up available cellular concentrations of magnesium that's needed to hydroxylate (metabolize) vitamin D3 to its genetically active metabolite 1,25(OH)2D3. 

The simple fix is stop taking vitamin D3 loading dose for a day or two and double the magnesium dose to 800 mg/day split 400 mg in the morning with breakfast and 400 mg with the evening meal.  When you restart the loading schedule, continue taking 800 mg/day magnesium through the 12th day of the loading schedule, after which you drop the Vitamin D3 dose to an initial 10,000 IU/day maintenance dose and the magnesium back to 400 mg/day.  Doubling the Omega-3 fish oil can also help while on the 12-Day accelerated vitamin D3 loading schedule.  VocTeacher is spot on...  Vitamin K2 also helps.

If this doesn't get you back CH pain free, add 500 mg/day Quercetin.  It helps activate the vitamin D receptors (VDR) that are needed to continue the genetic expression that prevents CH.  If that doen't work, you may have picked up an allergy to something in your environment or diet.  Allergies release histamine in such large quantities, they make nearly all forms of CH prophylaxis ineffective. In this case, see your local chemist for a first-generation antihistamine like Diphenhydramine (Benadryl) and take at 25 mg every 4 hours for a week to ten days.  Second- and third-generation "non drowsy" antihistamines don't work as well as they cannot pass through the blood brain barrier to block histamine H1 receptors at the genetic layer.  Just be careful and not drive as this much Diphenhydramine will make you drowsy.  If you need to drive or be sharp as a tack during the day, wait until you're home for the day then take 50 mg Diphenhydramine as you walk through the door and another 50 mg at bedtime.

Regarding the placebo effect...  it happens with all forms of cluster headache prophylaxis not just vitamin D3.  As the raw efficacy of the anti-inflammatory regimen is 52% for a sustained pain free end point response and 80% for a significant reduction in CH frequency (an average of 3 CH/day down to 3 or 4 CH/week), both are well beyond the highest reported placebo response in CH of 14% to 43%, the lowest value was reported using the strict endpoint; cessation of headache attacks.  (Nilsson Remahl AI, Laudon Meyer E, Cordonnier C, Goadsby PJ. Placebo response in cluster headache trials: a review. Cephalalgia. 2003 Sep;23(7):504-10.)  Even if it was a placebo effect... you're still pain free so who cares... 

If you're the curious type and want to know for sure if this regimen is effective in preventing your CH or if it's the placebo effect... wait until you've been CH pain free for at least 2 weeks then stop taking this regimen...  If you're like me and many other CHers, your CH will return in 3 to 4 days and could take as long as a week.  When the CH returns (and it will), restart this regimen with a couple days at a 50,000 IU loading dose then drop back to your maintenance dose of 10,000 IU/day.  This will get you back CH pain free in a day...  two days tops.  I realize this sounds like a silly thing to do, but it will accomplish two things.  (1) It lowers the probability it was a placebo effect and (2) more importantly, it will give you confidence this regimen is actually working to prevent your CH.

When you've completed 30 days on this regimen see your PCP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH.  If there are any questions about these lab tests, give your PCP/neurologist a copy of the anti-inflammatory regimen CH (and Migraine) preventative treatment protocol from the following link: 

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

When you have these lab results in hand, please find the time to take the online survey of CHers taking this regimen to prevent their CH.  To start this survey, click on the following link.  We need results from CHers like you to convince neurologists this regimen is a safe and effective CH prophylaxis.
http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6

Thanks again, take care and please keep us posted.

V/R, Batch

Edited by Batch

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Hey Freud,

I've been providing outreach information about the anti-inflammatory regimen since December of 2010, a month after I developed it.   Since then I've received valuable feedback from from hundreds of CHers taking it.  Accordingly, this knowledge base provides answers to most questions.  The online survey of CHers taking this regimen to prevent their CH has been running continuously since December of 2011.  As of 1 Jan 2019, it's collected 293 completed and submitted surveys providing excellent clinical data.

With 80% of CHers who start this regimen experiencing a significant reduction in CH frequency from an average of 3 CH/Day down to 3 to 4 CH/week in the first 30 days and 50% of CHers starting this regimen experiencing a complete cessation of CH symptoms in the first 30 days, the anti-inflammatory regimen is the safest, most effective and least expensive CH prophylaxis available today.  Moreover, thanks to the feedback and some dedicated research on other supplements, we are now able to address the 20% who don't respond to this regimen in the first 30 days.  The most significant part of this regimen other than the vitamin D3 is diet.  An Atkins-Ketogenic diet with zero sugars, zero wheat products and limited carbohydrates makes a huge difference.  A Feb 2018 Italian study of 18 drug-resistant chronic CHers on this diet provided some eye popping results.

--------

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/

Introduction

Drug-resistant cluster headache (CH) is still an open clinical challenge. Recently, our group observed the clinical efficacy of a ketogenic diet (KD), usually adopted to treat drug-resistant epilepsies, or migraine.

Aim

Here, we aim to detect the effect of KD in a group of drug-resistant chronic CH (CCH) patients.
Materials and methods

Eighteen drug-resistant CCH patients underwent a 12-week KD (Modified Atkins Diet, MAD), and the clinical response was evaluated in terms of response (≥50% attack reduction).
 

Results

Of the 18 CCH patients, 15 were considered responders to the diet (11 experienced a full resolution of headache, and 4 had a headache reduction of at least 50% in terms of mean monthly number of attacks during the diet). The mean monthly number of attacks for each patient at the baseline was 108.71 (SD = 81.71); at the end of the third month of diet, it was reduced to 31.44 (SD = 84.61).
 

Conclusion

We observed for the first time that a 3-month ketogenesis ameliorates clinical features of CCH.

----------

I've been in contact by email with the Principal Investigator for this study and provided data on the efficacy of the anti-inflammatory regimen.  We're both confident combining both therapies will result in a jump in efficacy to over 90%.

Sooo....  To my way of thinking, starting the anti-inflammatory regimen is a good move.  Based on years of experience with this regimen, I'll wager your only regret will be you didn't start it sooner.

Take care and please keep us posted.

V/R, Batch

 

Edited by Batch

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Thanks for the response. 

The neurologist told me to take the vit d3 but to stop with the (extra) calcium. 
He was aware off the research available but it are almost all open study's but no double blind research so highly unreliable according 
to medical standards.


I'm still taking de 10.000 IE dose every day and the attacks are now down to minimum. (I can even enjoy a beer now)
Hard to say it because off the vit. d3 but í'm anxious to stop it just to see if it works.
Last few weeks where hell. So I'm taking my chances, I'm a bit skeptical but you're work does sound convincing.

I really hope it could be proven some day!

 

 

 

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Hi Virr! I have been on the D3 Regimen for years now. Since 2011 or 2012, can't remember for sure. I have my D3 levels checked yearly. This year my number was 124 measured by US standards. This was higher than my normal 103. So, I decided to cut back on the D3 to 5,000/day instead of the 10,000/day I have been taking. Guess what? I have been slammed with O2 resistant hits. Normally I am nocturnal, but these were hitting day and night. So, upped my D3 again and took a dose pack of Prednisone. 

It has taken 6 days to get back on track mostly. I am not pain free yet, but I am getting there. 

Now, you might ask why I did this. Because the doctors stick with 100 as a top number here. Above is safe if your other tests are good. But, I listened to my old doc and sent myself straight to Hades. Never again unless something unforeseen steps up and messes with it!  The medical profession needs to catch up and keep up. They do not and likely will not. You are your own best advocate. 

ATB 

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Hey Spiny,

I've kept my 25(OH)D serum concentration between 127 ng/mL and 188 ng/mL for the last 5 years and currently 163 ng/mL.  In that time my serum calcium remained within its normal reference range so no hypercalcemia a.k.a., vitamin D3 intoxication/toxicity.  My PCP is ok with my 25(OH)D this high as long as my serum calcium remains in the normal reference range.  He still makes a notation in my medical record that he suggested a lower vitamin D3 dose.  This is a CYA action.  Accordingly, there's nothing wrong with a 25(OH)D serum concentration of 124 ng/mL as long as it keeps you CH pain free and your serum calcium remains within its normal reference range.

Regarding the return of your CH after lowering the vitamin D3 dose.  You just discovered the therapeutic dose that keeps you CH pain free.  A couple days at a loading dose of 50,000 IU/day will get you back CH pain free a lot faster...

Take care and please keep us posted

V/R, Batch.

 

Edited by Batch

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I have been on batch’s regimen for a few years now and am completely pain free. I have been reading posts on this site and just registered. Just completed survey. Thanks batch. I have passed this info on to the few others I know who suffer.

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@Virrr - I started the D3 regimen early last December. After 2 weeks, I noticed a big difference: The D3 regimen had effectively aborted my cycle. I am still on the D3 regimen, and I still get cluster headaches, but they are tolerable and nowhere near as painful as they had been before I started D3. They either go away on their own, or I can treat them with 400 miligrams of ibuprofen. I no longer need to take Relpax (a triptan). For me, the D3 regimen has been a breakthrough. 

 

@Batch - Thanks for the additional instructions on the D3 regimen. I found them very helpful. 

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Can't even begin to thank Batch enough!! He's probably saved many lives with his d-3 regiment. I am 65 now and my clusters started in my 30's. Took forever to get diagnosed and then they gave me prednisone which after taking the headaches came back. Tried it all and when I first saw Batch with his vitamin regimen I laughed and thought he was nuts, but I was willing to try anything at that point. Lo and behold in less than a week the headaches subsided and went away. Can't thank Batch enough for what he has done for me and other sufferers. By the way I am episodic... Not chronic. 

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I also cannot thank Batch enough i was contemplating suicide my cycles usually lasted 4-10 months and i was at my wits end. Since starting the regimen ive had about 4 attacks in about a month and a half, instead of once or twice a day, and now almost 2 weeks without an attack! The cofactors he recommends are all very important. I take the d3 10,000 every 6 days.

Magnesium 400-800 a day.

Advanced K2 once

A mature multi to get the Zinc and Boron? 

And the fish oil omega 3 two times a day

Along with a probiotic once a day

Never would i have thought that vitamins would be of such help when literally nothing else would.

I still get shadows but ill take a shadow anyday compared to an attack daily.

Thank you Batch your a life saver!

 

 

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