The following links from the VitaminDWiki News Letter provide some interesting reading...  particularly for CH'ers using the anti-inflammatory regimen to control their CH.

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Take care,

V/R, Batch

Thanks Batch! :)

I have some input on this.

I've used D3 since my last cycle in 2011-2012.  At the time, the 10,000 IU daily D3 regimen ended the cycle almost immediately, and it kept the attacks away ENTIRELY up until a few weeks ago.  If I stopped taking it for a few days, I'd start to shadow again.  If I started taking it again, I'd stop.  There was a noticeable correlation.

I don't know what has happened.  (I haven't read the posted links yet) I don't know if the D3 never truly worked and it was all in my head, if my body has adapted, if I'm on some sort of super cycle or what...  Now it doesn't matter.  It has seemingly no effect at all.

That said...  I have noticed other benefits.  My immune system has benefited tremendously.  I very rarely get sick!  Prior to taking the D3 daily I caught everything that came by.  I will continue taking it.  That could be a coincidence as well but... I don't feel like it is.  There certainly haven't been any negative side effects from it.

Hey PM,

You're not the only CH'er to comment about the noticeable correlation between taking vitamin D3 and experiencing a cessation of your CH... or stopping this regimen and having your CH return...

You're also not the only CH'er to comment on experiencing the obvious health benefits of taking vitamin D3...

The statistically significant numbers involved in both cases favor causality rather than coincidence, so it's "not in your head" or mind games if you'll forgive the doubletalk... 

That said, there is an apparent adaptation... at least with respect to the loss of effectiveness of this regimen...  It's also likely that this adaptation did take place in your head... and elsewhere in your body... I'll try to explain...

I've been exchanging survey data with Dr. Stasha Gominak, MD, a neurologist in Tyler, TX.  She's been treating her patients with a vitamin D3 regimen similar to what we've been taking, except she's been doing this for over 6 years... She's also added another vitamin supplement.

She discovered an interesting phenomenon where some of her patients who were completely pain free on this vitamin D3 regimen experienced a gradual return of their neurological symptoms after two to three years.  There were no obvious changes in dose or life style...  The regimen apparently just stopped working and the symptoms returned.

It took a while then one of her patients called to say the regimen was once again working as it had in the past.  After a series of Q & A, Dr. Gominak focused on vitamin B12 and the rest of the vitamin B complex this patient had started taking. 

Lab tests confirmed nearly all of her patients who experienced a relapse while on the vitamin D3 regimen were deficient in vitamin B12 and likely most of the other B complex vitamins.  She also found that patients who didn't respond to this regimen did so after adding vitamin B 50.

She started prescribing the vitamin B 50 complex to address the apparent deficiencies...  and the vitamin D3 regimen started working once again! 

A few months later there was another setback...  If her patients stayed on the vitamin B 50 for more than three months... the neurological symptoms returned once again...  After some additional tests, Dr. Gominak confirmed that too much B 50 becomes counter productive.   She eventually settled on a three month course of treatment with vitamin B 50...

Rather than trying to explain her theory on the mechanism of action involved with vitamin B 50... it involves friendly colonies of flora and fauna living in our GI tract...  watch the videos of her presentation on "Sleep, Chronic Pain and Headaches" at the following link:

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When you finish that, read the article, "The human microbiome - Me, Myself, Us" at the following link then you decide:

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The bottom line...  adding a three month course of the vitamin B 50 complex isn't for every CH'er...  If the present anti-inflammatory regimen is preventing your CH...  it's not broken, so don't try to fix it...

If, on the other hand, the anti-inflammatory regimen hasn't resulted in a CH pain free response with your 25(OH)D between 70 and 80 ng/mL, (175 to 200 nmol/l) or this regimen worked great for a couple years then stopped working... then the three month course of vitamin B 50 may be just what you need...  Talk with your PCP or neurologist.

Take care and please keep us posted.

V/R, Batch

Hi Batch,
I take two Executive B stress formula tabs one in morning and one at lunchtime every day.I have been doing this for
decades, I still got CH's until starting the D3 regime and
now CH free. Do you think I should stop taking the vitamin
B?

Hoppy. 

Hey Hoppy,

As long as you're still pain free using the original anti-inflammatory regimen plus the stress formula... I wouldn't change anything.

Take care,

V/R, Batch

Thanks Batch.

hi guys,
             well just back from 2 weeks holiday and very relaxed !!
  had a little shadow on one of the days while I was away, a red bull fixed that !  im still on the verapamil, and as I was leaving our cabin at 5.00 am every morning heading out in the boat,so I forgot to take my verapamil for three days, normally take it after my morning cereal, but I found it hard eating that early in the morning.
so I was virtually getting verapamil withdrawl headaches.
im actually going into my doctor next week to discuss withdrawing from verapamil, so I was thinking batch, because my reaction to the vit d3 regime hasn't been as quick as most,  im going to get the normal test for d3 levels, but maybe it would be a good idea to test my vit b levels while im at it  ? 
I recently added the super k  and also got the Kirkland mature multi brand that you are taking.
im really happy overall with the regime, my levels at my last test were just on 200 nmol, but I have had issues with shadows, as per previous posts,  certainly my cycles have been a hell of a lot less than pryor to taking the regime and apart from one while I was away, which im putting down to verapamil withdrawl, ive been pain free since mid January.
I would be very interested to see what my levels of B are, and this could very well be why it hasn't completely made me pain free.
look, I know that the d3 regime is working for me and I would not hesitate in recommending it to those who have not tried it,  but as you said batch, things need tweeking every now and then, like the life extension super K which was recently added. and certainly as far as other health benefits goes, my wife has had two horrible flue's recently which did the rounds at her work, I would always then catch it off her, but this time, nothing, not even so much as a nose cold !I just went up to 15000 from 10000 d3 and sailed thru it.
i'll keep you informed of what my results for vit b are batch.
kindest regards
colin

Hey Colin,

I love detailed feedback like yours.  Great questions too.  The whole vitamin B thing is new to me. That said, the logic and clinical evidence behind vitamin B complex repletion therapy makes good sense. 

Dr. Gominak has given us a tremendous leg up on the need for vitamin B complex based on her clinical experience finding vitamin B deficiencies among her patients taking a similar vitamin D3 regimen.

Deficiencies like this may be part of the reason why some CH'ers who try the anti-inflammatory regimen don't respond and why some CH'ers who don't experience a complete pain free response.

As far as obtaining the vitamin B12 lab test...  Dr. Gominak orders both the 25(OH)D and B12 lab tests for all her new patients with sleep, chronic pain or headache disorders.

Take care and please keep us posted.  It's feedback like yours that helps make the anti-inflammatory regimen more effective for all of us.

V/R, Batch 

thankyou batch for your response and kind words, I think that your input into what you have done for many many people here is what needs applauding,   for me, life changing.
im booked in at the doctors next week, ill get a script for both the b12 and 25 ohd test, should only take a few days to get results back after that.
ironically, after I posted last nite, I sat down with some south African bilton, which is a cured meat product, well within a couple of hours I had shadows all damn night and they gradually faded out today !  lol
I think im one of those people that took along time for the vit d3 regime to kick in and ide put it down to an improvement of about 80,.  now that's fantastic, but im enjoying the tweeking and now the link to vit b with its potential of being " the missing link "  lol
my results will be interesting, i'll definitely post them up here for you to see batch.
thanks again for your imput
regards
colin.

hi batch,
  well I was in at my doctors this morning, got a plan to tapper off verapamil. then explained to her about vit b
she went thru her records and found that in may last year when I initially got my first blood test before starting the vit d3 regime, she tested for vit b12. the results then were
  pmol/l 320.   the ref range is ( 150-700)
so I suppose I was in the middle.  I took a new blood test while I was there and im back next Thursday for the results, but my question is what would be the target range and is the reference range for b12 (150-700)  out of date like the vit d3 range ? or should I say the deficiency figure  ?.
interested in your feedback batch
regards
colin
 

Hey Colin,

Good question... 150 to 700 pmol/L and 120 to 700 pmol/L are listed by several sources as the normal reference range for vitamin B12.

Your lab results for vitamin B12 are far from being considered deficient so I wouldn't worry about taking vitamin B 50 at this time.

I would suggest you double the Omega-3 Fish Oil to 2000 mg/day. 

Take care and please keep us posted.

V/R, Batch

hi batch,  thanks for your response
ive actually been taking two tablets of fish oil extra strength since January, each tablet has epa 270mg epa and 180mg dha.
I have been doing some research on b12 thru google and came up with some interesting stuff. the mention of deficiencies interfearing with our obsorbtion of melatonin and direct link to neuro areas,  really interesting.
on wikapedia there were some studies done in the mid 90's that 2 Japanese doctors did, and believed that patience were showing b12 deficiency symptoms at much higher than the minimum accepted level.
they concluded independently that 550 and 600 pg/mL were considered minimum recommended levels.
batch, it was quite interesting researching b12
I must admit, I am only just about to watch the links you put up on doctor Gominak's findings so i'll watch that with interest.  I just wonder whether the recommended minimum levels of b12 are similar to the vit d3 minimum range level ? I mean if we were all sitting on 50 nmol of d3 level, the regime wouldn't have an effect, from what ive read, its similar to d3 where intoxication levels are high and with know major side effects, so I was just thinking that if my levels are around the same as my previous test
( 320 pmol/L ) then would it not be interesting to titrate up maybe just for a month, rather than the 3 months doctor Gominak recommends and get my levels up near the top range to see if there was any improvement, similar to the green area for vit d3 ?    or am I grasping at straws    lol
  be interesting to find out if doctor Gominak has before and after levels, as she said she tests for both at the beginning.     perhaps I should watch the links u provided, she probably makes mention  lol    jumping the gun
cheers batch
colin
 

wow batch !
  just watched the video's from doctor gominak !!
  brilliant watch
thoroughly recommend everyone to take the time and go thru them....
thankyou for posting batch

regards
colin

Colin,

Roger "Wow" after watching Dr. Gominak's videos...  They hit me the same way...

Check the serving size on your Omega-3 Fish Oil...  If it's a serving size of 2...  Take four of them...

Agree, a month of Vitamin B 50 sounds like a plan...

Take care and please keep us posted.

V/R, Batch

hi batch,
            my fish oil says extra strength 1500mg,
equivalent epa+dha = 450mg total per tablet.  so I thought that 2 would be the max I could take ?  im sure happy to pop down another one as well ?
batch, i'll wait to next week for the b12 test result, and also interested in what my result for d3 as it was interesting what dr gominak said about keeping the d3 levels between 60 and 80,  I was sitting on 200 nmol before my last test, but I did titrate up for a week in January when I got bad shadows. she also stated in the video that any levels of b12 below 500 pg/ml needs to be lifted,  so if I convert my last years level im about 420 pgml. so depending on the result, presuming its the same, i'll do a month on b 50 then test again, I to think its worth the try, if its the final string to eliminating my monthly shadows, then the same course of action could help others that don't quite go pain free.
here in Australia, with our medicare, the total cost to see the doctor and get a blood test there at the doctors rooms comes to about $36, after rebates, of course I will have to return to get the results, but its worth every penny.
thanks batch, i'll keep you updated
regards
colin

Kudos to Dr. (h.c. (?) ) Batcheller!  ;)


Quote:

Peter Batcheller: A Survey of Cluster Headache (CH) Sufferers Using Vitamin D3 as a CH Preventative (P1.256) OBJECTIVE:To present survey results of 110 CH sufferers (CH'ers) using a daily anti-inflammatory regimen of vitamin and mineral supplements including 10,000 IU/d vitamin D3, (cholecalciferol) and Omega-3 fish oil as a CH preventative.BACKGROUND:Cluster headache is one of the most painful and disabling headache disorders known to man. Results from an informal survey CH’ers using the anti-inflammatory regimen as a CH preventative indicated a surprisingly high efficacy. A survey was needed to qualify and quantify the efficacy of this regimen.DESIGN/METHODS:A questionnaire was developed to capture efficacy, 25(OH)D lab results along with essential demographic and epidemiological information. Participants were advised to consult with their PCP or neurologist before starting this regimen and to ask for the 25(OH)D lab tests before and after 30 days of use or a favorable response.RESULTS:80% of CH'ers reported significant reductions in frequency, severity and duration of their CH. 60% reported remaining substantially PF. Average starting 25(OH)D was 23.4 ng/mL. Average 25(OH)D response after 30 days or favorable response was 76 ng/mL. Regimen appears equally effective for both ECH and CCH, although ECH'ers enjoy a slightly higher efficacy of 85% vs. 70% for CCH. A stress test of 25(OH)D reserves after 13 mo. PF, resulted in a return of CH after 8 days without vitamin D3. 33% reported comorbidities. There were no major adverse events reported.CONCLUSIONS:Empirical data suggest a possible causal relationship between a vitamin D3 insufficiency/deficiency and cluster headache. At <30 cents a day, this regimen with 10,000 IU/d vitamin D3, is safe, effective and well tolerated. It can be combined with most standards of care treatment strategies for CH. As such, it has the potential to become a new game-changing addition to the standards of care evidence-based recommended treatments of CH and other TACs Disclosure: Dr. Batcheller has nothing to disclose. Monday, April 28 2014, 3:00 pm-6:30 pm Copyright © 2014 by AAN Enterprises, Inc. Source: Peter Batcheller: A Survey of Cluster Headache (CH) Sufferers Using Vitamin D3 as a CH Preventative (P1.256)] - Neurology. 2014; 82:P1.256. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

What can I say...  I told them I was just an old Navy fighter pilot who got tired of his cluster headaches and decided to try something new to treat them...

V/R, Batch

Hey all long time reader. I started the vitamin D regimen when I was diagnosed as vitamin D deficient in the midst of a particularly severe bout of cluster headaches Christmas 2012. I took the heavy duty doses of the prescription strength pills and my wife ran across this site and we read about the regimen and thought I was a particularly good candidate for doing it.
I was never headache free for more than 8 months continuous since the onset of my cluster headaches in 1998. It was 15 months until I started having headaches again about 3 weeks ago. But I just had my levels tested before the onset and I was at 57. The only thing that had changed in that time is in February I started taking methotrexate for Psoriatic Arthritis and I misread the instructions on the Folic Acid and instead of daily I took it weekly. Since then all hell broke loose, The first 4 days were absolute hell, headaches only at night, but the oxygen was only relieving the pain for an hour and a half and the 4 mg sumatriptan injections only worked for 3 hours. Sleep was impossible.
I got a kenalog injection after day 4 and it lasted for 4 days. 2 days of having headaches again and I got another kenalog injection and about this time I started taking my daily dose of Folic acid. The headaches went away for 3 days and have been low grade for the week since. I have changed my diet to get more vegetables and fruits and taking Emergen C with glucosamine. One headache per night is bearable if I use Sumatriptan, but the oxygen still only works for about an hour and a half.

TONIGHT I WILL TAKE MY WIFE'S B Complex!!!!!!!

I just wanted to add my story and pray I can regain the peace that I had for 15 months after I started the Vitamin D.


EDIT-
I should add the Kenalog injections at the pain clinic are the first ones I have ever got. when I had the horrible CH's 15 months before this set I went to the pain clinic to see if this would helpl Anyone else ever have a kenalog shot in the nerve in the back of the neck?

Hey Want2ride,

Interesting post.  I've a few questions, comments and a couple suggestions you may want to discuss with your PCP and physicians at the pain clinic.

You indicated you started the anti-inflammatory regimen with "prescription strength pills."  Was the vitamin D a prescription or an over the counter brand?

Vitamin D2, (ergocalciferol), requires a prescription where vitamin D3, (cholecalciferol), can be purchased off the shelf/over the counter.  Vitamin D3 is also far more effective in treating a vitamin D3 deficiency than vitamin D2.

How much vitamin D are you presently taking?  Most CH'ers find 10,000 IU/day is more than sufficient to prevent their CH as long as there are no other competitors for the vitamin D3...  In your case with psoriatic arthritis, 10,000 IU/day vitamin D3 may not be enough...

Are you still taking methotrexate?  I'm not a doctor, but in 1986 I watched my 12 year old daughter go through chemotherapy for acute myeloid leukemia (AML). Methotrexate was the primary agent in the cocktail of chemotherapy drugs in her treatment protocol.  The effects were brutal, but there was no alternative at the time. 

I asked a lot of questions and did a lot of reading on methotrexate mechanism of action...  Methotrexate is an antimetabolite and antifolate drug.  In other words... it kills cells in the process of cell division.  As cancer cells multiply significantly faster than normal cells throughout the body, they are most affected..  Methotrexate also acts by inhibiting the metabolism of folic acid.

Both of these mechanisms have the potential to aggravate cluster headache as you've already found.

You may want to discuss the following links with the physician treating your psoriatic arthritis.

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Kenalog is a potent corticosteroid that acts as an anti-inflammatory...  There's usually a limit on the number of steroid injections due to some onerous side effects so it may be more beneficial to elevate your 25(OH)D serum concentration with higher doses of vitamin D3.

Regarding the B complex...  Dr Stasha Gominak, MD, a neurologist in Tyler, TX has been treating her patients with a vitamin D3 regimen very similar to the anti-inflammatory regimen.  The only real difference is she adds a three-month course of vitamin B 50.  This is a formulation of 50 mg of all seven B vitamins...  Check the label on your wife's B complex.

Take care and please keep us posted.

V/R, Batch

Thanks for the feedback. After this post I will follow your links. I started with the 50k 2x week of the vitamin d2 (prescription) at the direction of my local doctor since I was deficient at the time. I took it for about a week to week and a half before the cessation of the CH cycle. it wasn't until the end of the cycle that I read about the d3 regimen you recommended with the vitamin d, fish oil, k, magnesium, calcium, boron (from my dad's home raised honey). I also took a multi and "Emergen-C" with the Emergen-C 2-3 times weekly. I did substitute the prescription strength ones until they were gone at the beginning and i got tested after 2 months to check my levels (don't remember what it was then, but I have been in the low 60's most every time since with the 10k dosage of vitamin d daily.

Since Psoriatic Arthritis destroyed my knee after I quit taking my Humira for 5 months while waiting for meniscus surgery (now we both know not to go off it that long). When you go back on it after a lengthy absence it is lucky to work at 70% effectiveness when resumed (I suspect less in my case). I since went to a rheumatologist who put me on methotrexate to work in tandem with the humira to prevent destruction of other joints. Methotrexate is supposed to be taken with Folic acid (another b vitamin) to mitigate the side effects. I have been taking the recommended doses for the last month after I realized that I was taking 1/week rather than 1/day.

I also noticed that not always but sometimes processed foods (with added nitrates) and foods that are naturally high in nitrates (like grapes) tend to increase the regularity and intensity. Yesterday I was a bad boy and got them from multiple sources and last night I paid for it after 3 days of only 1-2 per day (at night only).
I took a B-complex last night.
15 mg Thiamin (b1)
17 mg riboflavin (b2)
200 mg of niacin
20 mg b6 (as pyridoxine Hydrochloride)
400 mcg Folic Acid
60 mcg  B-12 (as cyanocobalmin)
100 mg of panthothenic Acid (as d-calcium Pantothenate)
60 mg calcium
3 mg vitamin co-factor blend

WHEW I took a lot of Chem in college and that was still tough to type out.

I had a feeling I needed a little higher dose of vitamin D since my last test (57) was somewhat lower than the 15 month average(62-65).
Thanks for the feedback.

Another chemist...  I love it...  My chemistry and more importantly my biochem is sadly dated circa '65...  So much has happened since they cracked the human genome and the advent of molecular cellular biology...

The following VitaminDWiki link will take you to a persuasive argument for vitamin D3 rather than prescription strength vitamin D2:

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The B complex you're taking will likely work given enough time...  but the doses of most are a bit light to overcome deficiencies except in the long run... Vitamin B 50 or B 100 are more like a 5 lb sledge hammer as opposed to the tack hammer approach you're taking.

If you're still getting hit...  bump the vitamin D3 intake to 20,000 IU/day for a couple weeks.  That should jack your 25(OH)D up around 75 to 80 ng/mL.

I've found that popping 15,000 to 20,000 IU, (3 to 4) of the 5,000 IU vitamin D3 liquid softgel capsules between the back teeth and holding the contents between the cheek and gum for 15 to 20 minutes without swallowing or drinking any fluids improves absorption...  If you try this at the onset of a CH, you'll find vitamin D3 also works as an abortive.

Take care and hang in there.

V/R, Batch

Batch wrote on Apr 10^th, 2014 at 6:28pm:

What can I say...  I told them I was just an old Navy fighter pilot who got tired of his cluster headaches and decided to try something new to treat them... V/R, Batch

Hey Batch,

don't worry, be happy!  :) We know you are treating us better, than most "doctors" do. Actually I think you would deserve a "Dr. honoris causa".  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I think it is just brilliant that you have the chance to present the Vitamin-D3 treatment at the largest neurology congress worldwide, the AAN 2014 Annual meeting. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Folks, the abstract which I quoted above is the "Poster Abstract" of what Batch will be presenting at the AAN 2014. Please give Batch a big hand of applause!

pf wishes and all the best for the presentation!
Friedrich
   

Friedrich,

Many thanks my friend...  Just getting the abstract accepted and published by AAN has been a small miracle...

I've made all the reservations, paid my membership in AAN and the conference registration...  All I need to do now is finalize the poster, email it to the printers who support the poster sessions... and have some custom business cards printed for the event.

This should be a hoot... That said, I'm still cautious about how well received my presentation of this poster will be... 

Having been in the advanced technology business for over 20 years and done more 3-day trade shows as an exhibitor than my feet would care to remember...  I'll consider 10% of the neurologists walking by this poster stopping to ask a question as a success...

There's usually a media presence... so I'll maintain a sharp lookout...  A followup article to further spread the news about the efficacy of this regimen in preventing CH and migraines would amount to a home run for all CH'ers and migraineurs...

Take care and thanks again for the kind words...

V/R, Batch

I think that having your abstract published by such a prestigious group is, by itself, simply awesome. Showing a printed version of it to my doctors will really smooth the path to being listened to and taken seriously re: the anti-inflammatory regimen. Major kudos, Batch!

What's happening with this? I can't find the article itself, only a correction to the article, published in june, which says that "Mr. Batcheller has nothing to disclose." Have the neurologists busted Batcheller's idea?!? Please tell me that they have not...

Hey Jul,

The abstract is all that's been published so far.  I did present a much more informative poster presentation (equivalent to a 4 foot by 6 foot slide) at the AAN Annual Meeting last April and it was well received.

The statement "Mr. Batcheller has nothing to disclose." basically says neither big pharma, one of the vitamin manufacturers or any other company/corporation paid me to say anything.  In other words, the data is unbiased by any external interests or influences.  The way it should be.

Moreover, the cost of the abstract submission, printing the poster, round trip air fare from Seattle to Philadelphia, three nights of room, meals and cab fare came out of my pocket...

I'll be submitting the final manuscript for publication in a few weeks.  Not sure which of the neurology journals is going to print it... but I'll get it printed one way or another.

In the mean time I'll be happy to send a pdf copy of the draft manuscript to any CH'er who needs it to convince a neurologist to take interest... 

I can say that Dr. Todd Rozen, MD, who heads the Headache Center at the Geisinger Neurosciences Institute, Wilkes-Barre, PA, tolls me in April that he's been treating his chronic CH patients with vitamin D3 for over a year...  He's seeing the same response rate...

Take care,

V/R, Batch

Ok thanks a lot for the info. Please keep us updated on the journal and date of publication!