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MRUPE

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Hey MRUPE,

Welcome to Clusterbusters.  You've come to the right place.  We know what you've been going through and the good news is it just doesn't need to be that way.  You've already discovered the wonderful benefits of oxygen therapy.  I only wish more CHers would pressure their neurologists to obtain it.  As you appear to be taking a discerning approach in selecting a CH preventative treatment protocol, you may find the following of interest.

I'm heavily biased to suggest the anti-inflammatory regimen with vitamin D3 and the cofactors as a safe and effective method of controlling/preventing your CH. I'm also biased to suggest psilocybin as another safe and effective method of controlling your CH.  I've seen it work many times when all else failed.

As the guy who developed the anti-inflammatory regimen and started taking it in October of 2010, I consider this method of CH intervention a very safe bet.  I've been essentially CH pain free ever since.   I started providing information outreach on the benefits of this vitamin D3 regimen in December of 2010 and I've been running an online survey of CHers taking this regimen since December of 2011. 

As of 30 December 2018, 290 CHers had completed and submitted their responses to this survey.  The results are impressive to say the least.  In terms of raw efficacy, the 30-day response rate for the entire cohort finds over 80% of CHers starting this regimen experiencing a significant reduction in the frequency of their CH from a mean of 3 CH/day down to a mean of 3 CH/week.  Moreover, 52% of CHers starting this regimen experience a complete cessation of CH symptoms in the first 30 days after starting this regimen. 

It's significant to note that over the 10 years I've been providing information outreach on the benefits of this regimen in preventing CH, that there have been no reports of adverse events requiring medical attention and no cases of hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity.  I've analyzed the results of every RCT and study involving CH and migraines.  None of them including verapamil, have reported or concluded a level of efficacy that comes even close to matching the safety and efficacy of vitamin D3 in preventing CH.

The basic anti-inflammatory regimen supplements illustrated in the following photo haven't changed much since December of 2011 with the exception of vitamin D3.  I began suggesting the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 in July of 2018.

qX21Q7J.jpg

I began suggesting the Bio-Tech D3-50 after finding it was faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations.  It's also less expensive.

Now for the exciting news regarding the raw efficacy of this regimen in preventing CH.  I took a download of the survey database a week ago on 30 December and have been crunching the numbers ever since.  Surveys submitted during 2019 indicate a 30-Day favorable response rate of over 90% and complete cessation of CH symptoms at greater than 65%.  I'm not going to give the actual raw efficacy figures as I hope to publish these results at some point later this year and I don't want my manuscript rejected for self-plagiarism.  I've already had two of my manuscripts on this study rejected for this reason.

I know the medical evidence purists will say this was not a randomized, blinded and placebo controlled RCT, so lacks strength as medical evidence.  No argument.  However, as a CHer since 1994 and chronic since 2005, I'm not going to pole vault over mouse turds...  To CHers, there's no difference between a CH prevented by an intervention or placebo effect.  In short, I'll take the placebo effect any day to avoid the terrible pain of our disorder.  Moreover, as for the infamous p value reported in RCTs, that over 300 CHers from over 30 countries have enjoyed the same efficacy of this regimen over the last 9 years of this study, this level of efficacy is hardly a coincidence.

We've also made some adjustments to the treatment protocol.  I say "We" as none of this would have been possible without the participation of thousands of CHers here at Clusterbusters and CH.com over the last 10 years.  In a very real sense, this is your regimen and treatment protocol.  Direct feedback from CHers taking this regimen is so valuable.  For example, this feedback indicates the efficacy of this regimen increases with time and higher serum concentrations of 25(OH)D3 due to higher daily maintenance doses of vitamin D3.

These protocol adjustments have been simple, yet effective.  When I first started posting about the efficacy of this regimen in December of 2010, it was one size fits all with 10,000 IU/day vitamin D3 plus the cofactors.  The first adjustment involved starting this regimen with a 2-Week or 4-Week accelerated vitamin D3 loading schedule to elevate serum 25(OH)D3 more rapidly and achieve a favorable response more rapidly.  Over the next two years that loading schedule evolved to a 12-Day loading schedule taking 50,000 IU/day vitamin D3 for 12 days.  It was just as effective and took less time to reach a therapeutic effect.

I attribute the increase in the raw efficacy of this regimen and CH preventative treatment protocol to the switch to the Bio-Tech D3-50 and the 12-Day accelerated vitamin D3 loading schedule.

My analysis of survey data through the end of 2018 indicated the mean 25(OH)D3 serum concentration for Episodic CHers experiencing a favorable response to the anti-inflammatory regimen was 80 ng/mL while the mean 25(OH)D3 serum concentration for Chronic CHers experiencing a favorable response to the anti-inflammatory regimen was 90 ng/mL.  Clearly, one size does not fit all... Accordingly, I've made the following changes to the vitamin D3 dosing strategy regarding the target 25(OH)D3 serum concentration ranges and accelerated vitamin D3 loading dose duration ranges.

Episodic CHer Target:  80 to 100 ng/mL - Load at 50,000 IU/day for 12 - 14 days

Chronic CHer Target:  90 to 120 ng/mL - Load at 50,000 IU/day for 14 - 16 days

Migraineur Target:  100 to 140 ng/mL - Load at 50,000 IU/day for 16 - 18 days

It's important to understand these suggested 25(OH)D3 serum concentration target ranges and loading schedules are starting points for the average CHer.  Many of us (like me) will require a higher 25(OH)D3 serum concentration, a longer period of loading at 50,000 IU/day and a higher maintenance dose to experience and maintain a CH pain free response.  

At the completion of these loading schedules reduce the vitamin D3 intake to an initial maintenance dose of 10,000 IU/day with the oil-based liquid softgel vitamin D3 formulations or if you're taking the suggested Bio-Tech D3-50, you'll need to take one (1) of these 50,000 IU water soluble vitamin D3 capsules a week.  Doing the math, that works out to an average dose of 7,140 IU/day.  Given the higher bioequivalence of the D3-50, this should be sufficient for most CHers.  Changing the dose is a simple matter of adding or subtracting a day or more between doses.

The following chart illustrates the last three years worth of my labs for serum 25(OH)D3, calcium and PTH.  As you'll see, as a chronic CHer, I've maintained my 25(OH)D3 well above 120 ng/mL.  It's been as high as 188 ng/mL to remain CH pain free during a major allergic reaction to mold spores. I've averaged 150 ± 4 ng/mL for the first 7 months of 2019.

hVz4sJb.jpg

If you haven't gotten the message from my labs, don't be afraid to take your serum 25(OH)D3 concentration as high as needed to experience a lasting CH pain free response.  My PCP has no problems with my 25(OH)D3 serum concentration this high as long as my serum calcium remains within its normal reference range (in the green), and it has as you can see in my charts above.  You'll also note that my serum PTH mirrors serum calcium.  This inverse relationship between serum 25(OH)D3 and PTH concentrations indicates normal calcium homeostasis. In short, when serum calcium goes up to a high normal, serum PTH drops to a low normal.  This is a classic indication of calcium homeostasis in action that helps prevent hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity.

Before I go any further, it's essential for CHers to see their PCP/GP or neurologist, whoever has the best visibility of their overall medical history and prescribed medications if any, to discuss this regimen before starting it and to ask for a set of labs for serum 25(OH)D3, calcium and PTH.   It's not uncommon for some physicians to avoid recommending this regimen or even suggest CHers not start it and that's perfectly natural. They're concerned about malpractice suits.  If you feel strongly enough about starting this regimen, have your doctor note any concerns in your medical records, but try to make your doctor part of your team while starting and continuing this regimen. 

You'll need another set of labs for your serum 25(OH)D3, calcium and PTH, 30 days after starting this loading schedule.  Ask your PCP/GP or neurologist to have your lab orders for 25(OH)D3, calcium and PTH sent to the nearest Quest Diagnostics collection center.  

The rationale for doing this is simple.  Quest Diagnostics uses the 25(OH)D Liquid Chromatography Dual Mass Spectroscopy (LC-MS/MS) assay that's good to a maximum  25(OH)D (combined D2 and D3) serum concentration measurement of 512 ng/mL.  The DiaSorin 25(OH)D assay used in most medical clinics can only measure 25(OH)D up to a maximum serum concentration of 117.4 ng/mL.  As you may need a higher 25(OH)D3 serum concentration than 117.4 ng/mL, the LC-MS/MS assay for 25(OH)D3 is the only way to go. Try to get copies of your labs sent to you so you can track your progress.  If you register at MyQuest, it's free, at the following link, https://myquest.questdiagnostics.com/web/home you'll have access to all your lab results as soon as your doctor has acknowleged their receipt.

I'll be posting the above changes to the existing protocol posted on my webpage at vitaminDwiki.com later this month at the following link, ttp://is.gd/clustervitd.  You can download the existing treatment protocol by clicking on the following link. 

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

It's interesting to note that since I posted this treatment protocol on 21 Jan, 2017, nearly three years ago, readers of my web page at vitaminDwiki have downloaded 43,387 copies of this treatment protocol... Doing the math, that's an average over 45 downloads a day.  I've no idea how many CHers or migraineurs are following this treatment protocol.  That said, if the rule of "one out of ten" applies, > 4000 headache sufferers are following this regimen.

In closing this epistle to vitamin D3, the other great news is it appears there's going to be a gold standard RCT conducted on this regimen as a CH prophylaxis later this year.  When the result of that RCT are published, I'm confident you'll have ample medical evidence to take to your PCP/GP or neurologist.

Take care and please keep us posted should you decide to start this regimen.

V/R, Batch

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Ha ha ha ha ha! @Batch would they do that? Then again.... 1 pill once daily (or once every month or so) would be simple. The fact it would be profitable would drive research into ch... I love it when anyone does research into ch.

Edited by Brain on fire
Rethought response

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Thanks for the information Batch. I’m happy to hear there is a potential controlled study looking into the D3 regimen. I’ll be paying attention. 
 

As someone that follows evidence and research methods I appreciate your humility when discussing your findings/work.

I also appreciate your comments on the “placebo effect.” The subjective experience that is “pain” is challenging measure objectively. My stance is if we can, we should attempt to control for these effects. Given the amount of non sense and charlatans out there taking advantage of people in pain, we should do our best to be transparent in what we do and don’t know. 
 

Thanks again and I look forward to learning more from everyone here.

 

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Hey MRUPE,

Thank you for the kind words.  All humility aside, if the CH beast is jumping ugly making your life miserable, you're missing a very safe and effective CH prophylaxis by not starting the anti-inflammatory regimen.  I'm a 75 year old retired Navy fighter pilot, with a degree in Chemistry, a CHer since 1994, chronic since 2005 and a pragmatist.  If I were faced with a CH intervention offering 80% to 90% efficacy that's proven to be safe and effective over the last 10 years with direct feedback from over 300 CHers from 30 different countries including lab test data, I'd go for it.  But that's just me. 

I'm confident the Gold Standard RCT of this regimen currently in planning as a CH prophylaxis will confirm the results from the present Pre-Post, Open Label Intervention study that's been running for the last 9 years. Waiting for the results of this RCT while the CH beast jumps ugly three or more times a night, even with oxygen therapy for another year makes no sense to me.  It's going to take that long.  At last count, there are 5 doctors taking this regimen to prevent their CH and two of them are neurologists.

This regimen is so safe, I've had my entire family and close friends taking it since 2011.  That includes my daughter and niece who have been on this regimen since 2011.  Between them they've gone through three flawless pregnancies and deliveries.  Their OB's were concerned at first over the 10,000 IU/day vitamin D3 dose.  However, after each of them had two sets of labs for 25(OH)D3, calcium and PTH and the results all came back in the green coupled with the flawless pregnancies, deliveries and super healthy babies, these two OBs are now suggesting the anti-inflammatory regimen to all their expectant and potential mothers in waiting.

At this point I have three grand babies who were bathed in maternal vitamin D3 from conception through breastfeeding.  We're talking babies with Einstein intellect, Olympic class physical development and T-Rex immune systems... they just don't get sick.  They now take vitamin D3 at 50 IU/lb of body weight/day plus a multi-mineral and vitamin chewy.  Fred, a.k.a., Winefred, her photos shown below, is the oldest now at 6.  She was speaking fluent Hochdeutsch at age two, attended pre-kindergarten at age 4 in Heidelberg Germany where only German was spoken.  Little brother Orrin, now 2 is also bi-lingual.

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Take care and please keep us posted.

V/R, Batch

Edited by Batch

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