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Michael63

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Re: 123 Days PF And I Think I know Why
Reply #2425 - Mar 24^th, 2016 at 12:24pm

Day 13 of the D3 loading dosage of 50,000iu and all the co factors. I have been using Batch's recommendation for the 2 week loading dose. After 6 days I had 3 days PF, then, a few days back to pleasing the demon. The attacks were not as painful as previously. I get a shadow but the daytime attacks have all but disappeared.

Question is, after I achieve the two week loading dosage, is it prudent to keep the 50,000iu going for another week or so. I am scheduled for blood work next week to attain my 25(OH)D. When I started the therapy regimen, it was 30 so I am hoping to get somewhere close to the 80 that seems to be the magic number.

Is there a problem continuing the 50,000 further?

After reading many of the posts on the D3 regimen, my results seem normal, as far as reoccurrence of pain.

So far, I am pleased.

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Radar63 CH.com Junior Offline I Love CH.com! Posts: 42 UK Gender:	Re: 123 Days PF And I Think I know Why Reply #2426 - Mar 24^th, 2016 at 4:56pm hoppy and Peter, Thank you I will try that. I do take a vit C supplement as well each day. P/F days to you all. Ian
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 123 Days PF And I Think I know Why Reply #2427 - Mar 24^th, 2016 at 5:32pm Hi Michael, Maybe try just taking 10000iu/day, and see how you go. Hoppy
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #2428 - Mar 25^th, 2016 at 3:33am

Michael,

We all respond to the anti-inflammatory regimen differently. Some are lucky and experience a pain free response within the first 24 hours... Others can take up to a month or more to achieve a pain free response.

The total loading dose is 600,000 IU of vitamin D3. If you've take that much at this point, drop back to a maintenance dose of 10,000 IU/day for another couple weeks to allow your 25(OH)D to reach a stable equilibrium then go in for labs of your serum 25(OH)D, total calcium and PTH.

We're looking for a 25(OH)D serum concentration around 80 ± 10 ng/mL, total calcium within its normal reference range and PTH near it's lower limit.

Take care and please keep us posted.

V/R, Batch

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MGP59DB

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Re: 123 Days PF And I Think I know Why
Reply #2429 - Apr 10^th, 2016 at 8:13am

I will also post here .
I just read thru a lot of this thread .
There is plenty of good information here .
I just want to say that I have responded very well to this D3 regimen . First time I have been PF for a week in the last 5 years .
Simply by taking Fishoil and D3 without a loading dose or serum checks.
Everyones metabolism is different , I have only been supplementing the D3 for 14 days and have been without an episode for 10 .
I was having chronic problems . Verapamil was helping but I don't believe it was addressing the root cause .
I hope this continues to work for me and the overall benefits of the regimen are far better than the pitfalls of other Meds I have tried.
Thanks to Batch for continuing to provide information to fellow sufferers .
Frankly I think this needs to be on the front page of every medical magazine in the country!
I will continue with this and tweek what I need to , I found the pot of gold at the end of the rainbow!

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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #2430 - Apr 10^th, 2016 at 11:44am Hi MGP, what a great pleasure to read your post and hearing that you too are pain free. Batch's relentless work has helped many of us. Are you not taking the other co-factors included in the regimen? All the best
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MGP59DB

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Re: 123 Days PF And I Think I know Why
Reply #2431 - Apr 10^th, 2016 at 7:37pm

No , I have not taken the other co-factors .
But I plan to use the full regimen and will pick up the other things tomorrow after work.
I do have some shadows poking around - but it is like muscle memory . I have had this pain for so long my body is almost like reaching for the pain that is not there . It misses its old friend ...but I do not.
I took a nice long nap today

woke up refreshed and pain free . That has not been the case for at least 2 years , I only took a nap expecting to wake in an hour with a big head ache.
My body needed something it wasn't getting naturally . And this is it .
I still cannot believe that 2 Neurologists , an ENT , 2 PCPs , and 3 Dentists among others did not mention the possibility of a Vit D deficiency.
When the Medical field is more interested in $ than in peoples well being , the world is in trouble , and we are in trouble.
Two and a half weeks ago a PCP told me that I can try it but doubts that it will help and shrugged. He did write me a script for Oxogen Therapy , a nice place down the road (affiliated with the hospital) would be happy to set me up with all the nice expensive equipment .
I have printed out the protocol and will throw it on his desk with the bill he gives me for a useless visit.
At this point , this week I am cutting my Verapamil in half . and if I have no ill effect I will reduce it even more .
I may be jumping the gun on this a bit , but after all the junk I have put into my body trying to get some relief and all the costs of these drugs that screwed up my head and body to no avail . I am mad at the whole system .
Gabapenton , Tramadol , Verapamil , Carbamazapine , Shooting saltwater thru my nasal passages , Steroids , I probably screwed up myself more by listening to Drs , I feel like a cash cow that was passed around the whole towns medical community.
In the end it was the VA who gave me the right Diagnosis and then they passed me thru their money Filters . 3 MRIs -CTscans - TMJ xrays - Neurologists etc. all at the taxpayers expense .
In the end it was my stupidity for not listening to this earlier and I caused myself another year of pain .
Sometimes the simplest solution is the right one. It all makes sense to me now .
Sorry I got off on a rant , I should be happy.

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« Last Edit: Apr 10^th, 2016 at 7:40pm by MGP59DB »

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 123 Days PF And I Think I know Why Reply #2432 - Apr 11^th, 2016 at 12:12am Hi MG, Rant as much as you like, after reading your post, you have more than enough reasons to be mad at the medical system. Wishing you pain free years ahead. Hoppy
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #2433 - Apr 11^th, 2016 at 1:05am

Hey MGP,

I share your frustration that more neurology and headache journals are not covering the obvious relationship between cluster headache and a vitamin D3 deficiency.

Moreover, if that relationship attracts interest, then the fact that taking 10,000 IU/day vitamin D3, Omega-3 fatty acids and the vitamin D3 co-factors to treat that deficiency is also a very effective cluster headache prophylactic, should deserve front page billing...

Making progress on such an article has been a slow uphill battle. I managed to get an abstract of results from the online survey of 110 CHers (190 as of 3 March 2016) taking this regimen to prevent their CH published in the American Academy of Neurology's journal Neurology at the following link: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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I was also invited to make a poster presentation at the 2014 AAN Annual Meeting in Philadelphia, PA in April of 2014. The poster presentation was well received and I've had a few neurologists start suggesting this regimen since then.

We face two major problems going forward with more articles like this. The first is obvious... no gold standard RCTs using vitamin D3 at a dose of 10,000 IU/day as the intervention for cluster headache. Even if such an RCT were possible, funding will be a problem and it's doubtful there would be sufficient participation to power such a study.

In addition, there is also a clear and present bias against treating a wide variety of medical conditions with vitamin D3 at therapeutic doses. Part of that bias is either built into the curriculum with disinformation about vitamin D3 or courses in vitamin D3 therapy are absent at nearly every contemporary medical school.

This bias is widespread frequently taking the form of fear mongering articles warning against the “dangers” of taking pharmacological doses of vitamin D3.

This bias also takes the form of opposition research as evidenced by the number of studies concluding U-shaped, J-shaped and reverse J-shaped mortality curves associated with increasing doses of vitamin D3 and resulting higher 25(OH)D serum concentrations.

An author of one of these opposition research studies had a clear conflict of interest being employed by several large Pharmaceutical firms.

This is all very disconcerting when you consider the fact that the FDA Adverse Event Reporting System (FAERS), has yet to report a single death attributed to vitamin D3.

In the mean time, providing outreach with information about the effectiveness of the anti-inflammatory regimen here at CH.com and Clusterbusters is paying off. It has attracted an estimated 500 CHers to this regimen since December of 2010. Many like you who are amazed at the simplicity and effectiveness of vitamin D3 as a CH preventative.

I'm also working on a paper titled: Why Most Clinical Trials Listing Vitamin D3 (Cholecalciferol) as the Intervention, Fail to Conclude Improved Clinical Outcomes Favoring the Benefits of Vitamin D3. It's based in part on a survey of RCTs and CTs registered in clinicaltrials.gov.

The good news is there have been 760 RCTs, CTs and OS listing vitamin D3, (Cholecalciferol), as the intervention registered in clinicaltrials.gov between 01/01/2000 and 12/07/2015. 730 of these studies have been registered since January of 2005. 380 of the 760 studies are listed as completed and 60 are listed as having results.

The following chart provides a early look at some of the results.

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The other good news as the above chart illustrates, is the vitamin D3 genie is out of the bottle...

I hope to have this paper published later this summer.

Take care and hang in there. It's posts like yours that help attract more CHers to this regimen.

V/R, Batch

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« Last Edit: Apr 14^th, 2016 at 7:38pm by Batch »

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MGP59DB

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Re: 123 Days PF And I Think I know Why
Reply #2434 - Apr 11^th, 2016 at 6:13pm

Ha Ha , I came back to this today expecting to hear some less than favorable responses to my little rant .
I actually did have a couple of little problems overnight , I mean I woke up with just a minor hurt that faded within five minutes when I sat up . I did get the other co-factors today and will set up a different schedule to take these with a meal . As I have been doing it in the morning when I eat very little food until 4-5 hours later . I need to shift it over to when I get home from work for convenience and because I always make a good meal then .
It also could be that I have dropped from 480mg of Verapamil to 240mg yesterday.
Plus the weather factor. I will give myself a chance to level off for a few weeks .
I am going to be doing a total of 17K D3 for the next two weeks , then drop to 12K maintenance with the other co-factors .
I will keep you informed.

Edit: Like I was saying before , I see the wisdom in this protocol now . And why it has made such an effect on me personally . I live in a Northern geographic location with little sun in the winter . I have lived in the sunny regions for a lot of years . I now work indoors as opposed to out of doors . I tend to spend a lot of time in the sun during the summers here working in my gardens and such . Explains why things tend to be better during the summer months.
I did have an injury to the left side of my head quite a few years back . That is where the pain is .

Verapamil did help me a lot , it made the episodes shorter and less frequent , my concern is what it is doing to the rest of my body that doesn't need it. As with all of the other Meds that fixated on the entire nervous system not just the painful areas.
Like it doesn't make a hell of a lot of sense to prescribe a Med. that lists increased suicidal tendencies as a side effect to someone who has the 'Suicide' headache syndrome. ??

I don't know if this will fix it or stop it , but so far it looks good and I like the fact that I can get off the stuff that is not so good for me.

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« Last Edit: Apr 11^th, 2016 at 6:43pm by MGP59DB »

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MGP59DB

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Re: 123 Days PF And I Think I know Why
Reply #2435 - Apr 16^th, 2016 at 8:49am

Another week gone by and more good news . So far so good . I had 1 - 8+ episode out of the blue , but heck 1 episode in 3 weeks over a level 2-3 is damn good in my book.
I will stay on this protocol !! Seems lowering the Verapamil has made little difference .
I am sleeping without incidence , that in itself is worth it .
If you are debating whether or not to give this a try , don't wait anymore , do it .
It has made a big difference in my condition .

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Michael63

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Re: 123 Days PF And I Think I know Why
Reply #2436 - Apr 28^th, 2016 at 7:12pm

Just a quick update on my experience with the D3 regimen.

Started the D3 on or about the 10th of March. Roughly 6 weeks now. First week was so-so as to results, but the episodes were reduced pain and frequency. After an adjustment that I talked to Batch about, increasing the Fish Oil, things only got better.

After the first week of skepticism and continued use, I started having pain free days. 2 here, 3 there for about 2 weeks. The episodes were very minor and the ones at night only required me to sit on the bed and let my feet hang.

Time passes and into weeks 3 and 4 even the shadows are non existant.

I have been pain free now since the 10th of April.

You have a skeptic converted into a believer.

I know there has been a lot of technical information that was put on this site, but if one follows the basics of the theories, I am confident that others will have a degree of success.

No matter, I am one happy man who is no longer afraid to go to bed.

Thank YOU everyone.

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #2437 - Apr 28^th, 2016 at 7:30pm Michael, Great news.... Congrats. Now never go off the regimen. Peter.
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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #2438 - Apr 29^th, 2016 at 2:00am Hi Michael, I love reading a post like yours. Sounds just like what i would have written 3 years ago, and like many others that have started Batch''s life saving D3 regimen. Yippie All the best
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pattik

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Re: 123 Days PF And I Think I know Why
Reply #2439 - Apr 29^th, 2016 at 12:16pm

Batch wrote on Feb 8^th, 2016 at 10:08pm:

The reason for the loading dose of vitamin D3 is simple... Infections trigger an immune response that sucks up vitamin D3 and it's metabolites like there was no tomorrow... and this creates a competition that can leave insufficient levels of vitamin D3 to prevent CH.

I know it's hard to prove a negative, but I just experienced an amazing recovery from a nasty spill. Two weeks ago I tripped and hit the sidewalk hard while walking my dog--many abrasions and a contusion on a hand, and a wrenched shoulder and back (which are already in rather delicate shape). I did all the expected things, like immediate ice for swelling and antibiotic ointment and bandaids. I doubled my D3 dose to 20K and increased magnesium for four days. The speed of the healing was remarkable, and I was especially impressed with the lack of damage to my shoulder and back. There are many great side-effects to this regimen.

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Joshua

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Re: 123 Days PF And I Think I know Why
Reply #2440 - May 2^nd, 2016 at 12:17pm

Probably my last post to this thread unless circumstances require it - BUT - been pain free since end of Feb due to D3 regimen, no doubt.

Thanks, Batch! It took some tinkering and an extended (4 weeks) period of 50,000/IU in order to stabilize, but am now doing the once weekly load and 20k daily. Will eventually go down to 10k probably after getting a blood test.

That's all for now! Looking forward to providing support and encouragement for others.

Joshua

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koctail

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Re: 123 Days PF And I Think I know Why
Reply #2441 - May 5^th, 2016 at 2:37pm

I was doing some research on ways to boost my Testosterone and one of the suggestions was Vit D3. I know low T has been discussed before as potentially related to CH, so maybe Vit D3 does more than just the anti inflammatory benefits? Also flax seeds and Turmuric/Curcumin supplements were recommended. The Turmuric is an anti-inflamm. I have been taking both of these as well. Anything else naturally that may be a Testosterone booster?

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #2442 - May 6^th, 2016 at 2:13pm

Pattik, Joshua,

Thanks for the great feedback. It's clear the health benefits of vitamin D3 go well beyond preventing CH. Joshua, you're helping confirm what I've suspected for nearly five years... that many of the CHers who don't respond to the anti-inflammatory regimen need higher doses of vitamin D3 to achieve a CH pain free state...

If you want to read about a jaw dropping example of treating patients with a devastating autoimmune disorder like multiple sclerosis with high dose vitamin D3 and achieving a complete remission in 95% of the patients, check out the following Vitamin D Wiki link:

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Michael, I think you're on the right track trying to increase your testosterone naturally with the anti-inflammatory regimen and other supplements. Once you understand the primary vitamin D3 mechanism of action involves genetic expression, you'll see one of the many benefits of the anti-inflammatory regimen includes testosterone production.

Genetic expression made possible by vitamin D3 is where the active hormonal form of vitamin D3, 1,25(OH)2D3 attaches to a gene at a vitamin D3 receptor (VDR). This unlocks the cells genetic library of instruction and the cell starts executing them.

The resulting cellular activities include replication, differentiation, up-regulation and down-regulation of genetic products, peptides and chemical messengers, and apoptosis, programmed cell death.

With that in mind, testosterone production starts in the hypothalamus with the production of gonadotropin-releasing hormone (GnRH). GnRH in turn stimulates the pituitary gland to produce the luteinizing hormone (LH) and follicle-stimulating hormone (FSH). LH and FSH in turn stimulate the testis to synthesize testosterone. This same process also works for women with the production of testosterone, estrogen and progesterone... which is why I urge caution when couples of childbearing age go on this regimen... Fertility goes up.

None of this is possible without vitamin D3... Zinc and vitamin A (retinol) also play essential roles in testosterone production. Sound familiar? After that, sleep and resistance training aid in the increased production of testosterone.

Ultimately testosterone production peaks in the late teens and stays high through age 25. After age 25, there's a slow but steady decline in testosterone production... The following link illustrates testosterone levels by age.

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If you think your testosterone levels are low, see an endocrinologist for a complete workup with the endocrine/hormone panel of lab tests.

Hope this helps.

Take care,

V/R, Batch

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #2443 - May 23^rd, 2016 at 10:18pm

For CHers who have been on the anti-inflammatory regimen for at least a month, if you haven't already done so, please take the survey listed on page 1 of the following link.

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Be sure to see your PCP for a 25(OH)D lab test if possible... The 25(OH)D lab results are a very important part of the survey data.

In addition... there are nearly 100 CHers who started this survey, but never completed it. If you fall into this category, please go back into your survey, answer as many questions as possible then click the submit button.

Many thanks,

V/R, Batch

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« Last Edit: May 23^rd, 2016 at 10:31pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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cc45713 CH.com Newbie Offline I Love CH.com! Posts: 20 Gender:	Re: 123 Days PF And I Think I know Why Reply #2444 - Jun 1^st, 2016 at 11:02am Hi everyone. I'm due for my next cycle in about a month and wanted to get a head start on the d3 regimen. Where can I find the latest d3 regimen guide?
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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #2445 - Jun 1^st, 2016 at 11:32am The following link should give you all you need to know to get started. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or The info you want is about half way down, updated in April 2016. Come back with questions and keep us updated. Peter.
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adamv

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Re: 123 Days PF And I Think I know Why
Reply #2446 - Aug 9^th, 2016 at 2:22pm

Greetings all, 4 year ECH sufferer looking to give the regimen a try shortly after 4 months into my latest episode.

I am curious if there is a link to currently available survey results/conclusions where I can view them? I haven't been able to find anything more than Batch's post on the regimen itself, which I cannot tell how current nor if there's an update since the original post somewhere buried in the 22 pages of posts.

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #2447 - Aug 9^th, 2016 at 4:28pm Adam, Here's the latest: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Get started soon, Peter.
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adamv CH.com Newbie Offline I Love CH.com! Posts: 12 USA Gender:	Re: 123 Days PF And I Think I know Why Reply #2448 - Aug 9^th, 2016 at 5:01pm Thank you Peter, I posted a question over there regarding the B 50 course...some clarity on the original post may prove helpful to first timers like me.
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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: 123 Days PF And I Think I know Why Reply #2449 - Sep 8^th, 2016 at 8:00pm Wondering if anyone knows why Batch has not been on here since Aug 26th. Judy
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