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Cluster headaches substantially reduced by 10,000 IU of Vitamin D in 80 percent of people

Note by VitaminDWiki

  • His protocol has proven to reduce frequency and intensity in 80% of cluster headaches
  • He is gathering data for the use of the protocol with migraine headaches which are ~100X more common
       lifetime Migraine = 18%, lifetime Cluster = 0.1%

Update Jan 2017

SupplementDose
Vitamin D3 (Cholecalciferol)10,000 IU/day
(Adjust as needed to keep serum 25(OH)D near 80 ng/mL)
Omega 3 Fish Oil1000 to 2400 mg/day
(Minimum of EPA 360 mg/day, DHA 240 mg/day)
Calcium *220 to 500 mg/day
Magnesium400 - 800 mg/day (magnesium chloride, glycinate or oxide)
Vitamin K2 (MK-4 & MK-7)MK-4 1000 mcg/day,
MK-7 200 mcg/day (MK-7 preferred due to half-life)
Vitamin A (Retinol) *900 mcg (3,000 IU) for men,
700 mcg (2,333 IU) for women (Maximum Dose)
Vitamin B 503 month course,
after that, the 7 B vitamins in the Mature Multi will be sufficient
Zinc *10 mg/day
Boron *1 mg/day minimum, 3 mg/day optimum

* Included in the Mature Multi in sufficient quantity
 Download the CH Preventative Treatment Protocol PDF from VitaminDWiki


Poster to be presented at the Vitamin D Workshop in March 2017
10,000 IU/DAY VITAMIN D3 AND COFACTORS ARE EFFECTIVE IN PREVENTING CLUSTER HEADACHE
Batcheller, Pete. Bremerton, WA 98311

Objective: To present survey results of 187 CH sufferers (CHers) using a daily anti-inflammatory regimen of vitamin and mineral supplements including 10,000 IU/d vitamin D3, (cholecalciferol) and cofactors: Omega-3 fish oil, magnesium, zinc, boron, vitamin A (retinol) and vitamin K2 complex, 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 dedicated 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 before and after start of regimen along with essential demographic and epidemiological information. Participants advised to consult with PCP or neurologist before starting regimen and to ask for the 25(OH)D labs before and after ≥30 days of use or favorable response. Study design meets Dr. Heaney’s rules for assessing studies of nutrient effects.

Results: 81.3% of CHers reported significant reductions in frequency (≥70%), severity and duration of their CH. 54.5% reported remaining substantially pain free (PF). Mean 25(OH)D serum concentration 22.8 ng/mL before start of regimen. Mean 25(OH)D response after ≥30 days or favorable response was 83.4 ng/mL. Regimen effective for ECH (Episodic Cluster Headache) and CCH (Cluster headache), although ECHers enjoy a slightly higher efficacy of 87.0% vs. 62.7% for CCH. A stress test of 25(OH)D reserves after 13 months PF by stopping vitamin D3 intake resulted in CH recurrence after 8 days. 33% reported comorbidities. Histamine from allergic reactions appears to be a major nonresponse factor. First-generation antihistamines that cross blood brain barrier to block H1 histamine receptors improve response rate. No adverse events requiring medical attention reported.

Summary of Major Findings: This epidemiological study confirms an inverse relationship between serum 25(OH)D concentrations and cluster headache. At 50 cents/day, this regimen with 10,000 IU/d vitamin D3 and cofactors, is a safe, effective and well-tolerated CH prophylaxis. Favorable response rate exceeds published placebo effect for CH preventatives by wide margin. Regimen can be combined with most standards of care treatment strategies for CH. Although exact mechanism(s) of action remain in a target enriched, genetic expression environment, vitamin D3 has the potential to become a game-changing addition to the standards of care, evidence-based recommended treatments of CH and other primary headaches.

Note: This poster is similar to the one below presented April 2014


Email description to VitaminDWiki Sept 2013

My name is Pete Batcheller.  I'm a 69 year old retired Navy fighter pilot, call sign "Batch," and long time chronic cluster headache sufferer...   I haven't had a cluster headache since October of 2010 when I started taking an anti-inflammatory regimen of vitamins and minerals including 10,000 IU/day vitamin D3. 

What's a cluster headache?  A Cluster Headache is not just another headache.  Saying it’s just a migraine does a terrible disservice to a cluster headache sufferer…  The following narrative is all too frequently used to describe cluster headaches.

Imagine, your right eye is being pried out of its socket with a screwdriver jammed through your temple into the back of your eye... or the back of your eye is being stung by a swarm of killer bees. The eyelid above that eye is beginning to swell shut. You start squinting, the eye is tearing and your right nostril is running like a faucet.  You are convinced there is blood pouring out of your head.  The red-hot screwdriver is crushing into your right temple and into the eye, causing excruciating, horrible pain.  You can’t escape the pain and sleep is impossible so you pace from room to room, dance the cluster two-step in little circles, cry out in anguish, bang your head with your fists, fling yourself to the floor or rock in a fetal position until eventually the pain drains from you. 

The first few attacks come out of nowhere.  You don’t know what’s happening, but you’re convinced an artery in your brain has ruptured and death is only minutes away.

Waiting for the next attack to happen is a terrible, scary feeling loaded with fear and anxiety.  Sleep, when it is possible after an attack, is another source of fear. You know the attacks hit within the first hour of sleep so you sit there all night afraid to lie down.  Some think they will go mad sitting there exhausted until the next attack hits and the terrible pain starts all over again. 

The attacks come in clusters, an average of three a day (some experience six to eight attacks a day) for six to eight weeks a year among episodic sufferers, hence the name cluster headaches.  Chronic cluster headache sufferers experience these attacks 24 hours a day 365 days a year with very few short periods of remission that last less than a week.

The really tragic story is too many cluster headache sufferers experience these terrible attacks for years before being diagnosed.  The cluster headache disorder has a prevalence of less than one tenth of one percent so even most neurologists are unfamiliar with the cluster headache syndrome and all too often assume it’s some form of migraine after ruling out actual brain abnormalities with an MRI.  There is no known cure and until now, no known cause of this disorder.

Over the counter pain medications are useless and powerful opiates dull the pain but cannot stop the attacks.  Many cluster headache sufferers rate the pain of their attacks on a 10-Point Headache Pain Scale developed by “Kip” Kipple, a long time cluster headache sufferer.  A Kip-1 cluster headache is minor but they rarely stay at this pain level escalating to a Kip-7 in less than a minute.  A Kip-10 cluster headache is the most extreme. When the pain gets to a Kip-10, sufferers head for the Emergency Room. Many cluster headache sufferers contemplate suicide after weeks of daily attacks numbering six to eight a day at this pain level.

As I indicated above, I no longer suffer from these terrible headaches after starting what I call the anti-inflammatory regimen.  The complete list of supplements used in this regimen are shown in the following table.
Image

I maintain a 25(OH)D serum concentration around 85 ng/mL and this keeps me pain free from cluster headaches.

I'm not the only cluster headache sufferer (CH'er) enjoying the benefits of this regimen.  Since December of 2010 over 400 CH'ers have started this regimen and 80% of them have experienced a significant reduction in the frequency, severity and duration of their cluster headaches. Over 70% experienced a 24 hour pain free response and nearly 60% remain pain free.  This regimen works effectively and equally well for both episodic and chronic CH'ers.

I've been conducting two surveys of CH'ers using this regimen to prevent their cluster headaches.  The first is a running tally of posts on our cluster headache forum at clusterheadaches.com from a thread I started in December of 2010.  To date this thread has been viewed over 132,000 times with over 1500 comments posted...  A good 20% of the posts are mine in response to questions.

The following narratives provided by four CH'ers who have experienced the benefits of the anti-inflammatory regimen with 10,000 IU vitamin D3, add a personal dimension to the online survey results:
- - - - - - - - - - - - - - -
Introduction: The following comments come from 42-year-old chronic CH’er who started the anti-inflammatory regimen a year prior to this post… Prior to then, he was averaging six CH a day at very high pain levels that resulted in several trips to the ER over the last 5 years. He has suffered from CH since age 13 and wasn’t diagnosed as a CH’er until age 22. He started as an episodic CH’er and became chronic 5 years ago…

“It's been quite awhile since I have posted about my results. I apologize.

It was right around this time last year I found this thread and printed off the information and went to my Doctor. I am here to give you all an update and it's been way over due. First and foremost, Batch... I can't thank you enough!

After reviewing the information, my Doctor brought me in and tested my D3 serum level, it was very low. I began the regimen and the very first night I had an uninterrupted night of sleep, something I haven't experienced in a very long time. A week later the beast up and left my body and took the shadows with him as well. Now, a year later I am still pain free and living like I have never lived before.

I am actually almost in tears writing this because since the age of 13 CH has disrupted every single aspect of life for me. Relationships, work and social activity were devastated and tested to their limits. There were several occasions where instead of buying my injections I contemplated of using the money to buy a gun instead. I am now 42 and life has just begun.

I am back to work full time and am in the process of opening up my own business. A dream that I have always dreamed. I can now finally say I love life, and that is something that I thought was never again going to be possible. I am happy to say that my Doctor is also using this therapy with a few of his migraine patients successfully.

Once again, Batch... you sir have saved my life. I am forever indebted to you. If I could meet you I would give you the biggest hug of your life. I can only hope that the rest of you find the same results and can experience life the way it is suppose to be. Take care every one and pain free days for all of my fellow CH sufferer's!”
- - - - - - - - - - - - - - -
Introduction: The next comments come from a 42-year old male episodic CH’er who has suffered from cluster headaches since age four.

“Just wanted to provide an update for everyone. I started on the regiment in early April or late March of 2012 in anticipation of my cycle (which comes every other year). I started taking 12,000iu D3 daily and added a 20,000iu once a week loading dose. My cycle never started and in Nov of 2012 I got my levels checked and they were at 140!

I eliminated the loading dose and since about the first of the year have cut my daily dose down to 8000iu. I got my blood work done again 2 weeks ago and it came back at 112. My cycle still has not appeared and I have now passed 3 years since the end of my last cycle. I almost feel guilty that I've been pain free all of this time when so many others are still suffering. I can't thank Batch enough for all of his work. I was skeptical when I first read his initial post. After all, we've all heard about fly by night "cures". But after reading how many people were being helped I figured I'd give it a try (but still stock up on my prednisone and verapamil). I know that things can change, and that, for now, there is no "cure". But, it's over a year later I've still got those prescription bottles collecting dust in my medicine cabinet. Thanks again Batch!”
- - - - - - - - - - - - - - -
Introduction: The following comes from a 63-year old female episodic CH’er who has suffered from cluster headaches for 31 years. Without intervention, she averaged 2 attacks/day over a 42-day cycle with a pain level average of 5 using the 10-Point Headache Pain Scale.

“Greetings!
I'm overdue to weigh in on my experience with the D3 regimen.
In a nutshell, I have been episodic since 1982- on average, once a year for 6 weeks at a time (usually in spring or fall). In all that time, I have skipped only 3 years. I have been unable to tolerate the side effects of standard preventative meds, so I was eager to try D3.
A year ago I started the D3 regimen right at the beginning of the episode without getting the blood test. The cycle was significantly altered for the better- -1/3 the usual number of attacks, most of which were of a very low pain level. The only negative was the cycle lasting an extra week.

I remained on the regimen after the cycle ended- -taking 15,000 IU's of D per day up until I had my blood tested and got a result of 96 ng/mL. With such a good number, I dropped back to 10,000 IU until just before my next episode was due in May of this year (then back up to 15,000 IU). Results: SPECTACULAR. Three or four barely noticeable twinges broke through over the last 2 months--just enough to let me know the cycle was still there. Interestingly, my usual associated symptoms were there, like tearing, stuffy nose, poor sleep and pronounced temperature swings. But no pain. So I'm confident the D3 did what it was supposed to do with no side effects.

So after 31 years of standard preventatives failing me, I feel like a new person with hopes of having 6 more weeks a year to enjoy my life. Knowing that CH can morph around most everything a person tries, I'm still pretty jaded. But as I happily watch my oxygen tanks gathering dust from disuse, I'll take this result for as long as I can.”
- - - - - - - - - - - - - - -
Introduction: The final example comes from a 51-year-old male in Germany who has suffered from chronic CH for 13 years. He posted the following on Saturday, 28 Sept. 2013. He also provided an excel graphic he prepared illustrating the effect of vitamin D3, Omega-3 Fish Oil and vitamin A on the monthly frequency of his CH attacks compared to previous years using only verapamil as a preventative.
“Thank you, Batch!

SIX weeks pain free today and my annual “summer peak” of CH attacks was avoided this year and I think Batch knows why!

Since summer 2000 I suffer from chronic CH, diagnosis was in July 2005. Since then I take verapamil daily between 120-480mg/day. This usually works quite well but every year during the summer the CH gets that bad that the verapamil does not seem to work anymore. This year in June I started the “Anti-inflammatory regimen”, in addition to the verapamil, with a very good result.

My Vitamin D3 (25-OH) values were as follows:
May 17, 2013: 20.2 ng/ml
August 21, 2013: 67.7 ng/ml

Starting from June 18, 2013 I took Vitamin D3 = 10,000 IU + Omega-3 = 2,400 mg (EPA 360 mg, DHA 240 mg) + Vitamin A = 800 mcg (2,667 IU) daily.

Twice I started the calcium + magnesium supplementation but discontinued this after a couple of days because of an increasing number of attacks. I took the calcium + magnesium supplementation hours after taking the daily verapamil, but this may still have a negative effect on the efficacy of the verapamil? After the discontinuation of the calcium + magnesium supplementation the number of attacks was reduced again from the following day.

Side effects from the Vitamin D3 + Vitamin A + Omega 3: I feel less tired during the day than I felt tired during the day earlier this year! – No adverse events, no negative side effects at all.

Since yesterday I reduced the daily verapamil dose from 480mg to 360mg and if everything goes well, I will continue to reduce my daily verapamil intake during the next months.

Please find attached a graph with my attacks per month from the beginning of 2011 until now.
Image
Again, Thank you VERY much, Batch!
Pf wishes”
- - - - - - - - - - - - - - -
I started the second survey in December of 2011.  It's an online survey of CH'ers who have used this regimen for at least a month.  As of 1 June, 109 CH'ers have completed this survey.  The survey questionnaire has the essential demographic and epidemiological questions along with lab results for 25(OH)D before and after starting this regimen to better frame the efficacy result.  The results of the online survey are consistent with the tally of posts from the link above at CH.com.  Both indicate 80% of CH'ers who start this regimen experience a significant reduction in the frequency, severity and duration of their cluster headaches.

The online survey results are providing some interesting information.  For example, of the CH'ers who obtained the 25(OH)D lab test before starting the anti-inflammatory regimen, averaged a 25(OH)D serum concentration of 24.3 ng/mL, (60.75 nmol/L).

At face value, finding CH'ers are vitamin D3 deficient isn't all that newsworthy considering more than 50% of the US population is also vitamin D3 deficient.

Where the survey results get interesting are responses from CH'ers who experienced a favorable response to the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and then went in to see their PCP or neurologist for the 25(OH)D lab test...  Their average serum concentration of 25(OH)D was 79.0 ng/mL, (197.5 nmol/L).  The other interesting finding is I have at least a dozen migraineurs using this regimen to successfully prevent their migraine headaches... my wife included. She was a 20 year chronic migraineur until she started the anti-inflammatory regimen in December of 2010...  She hasn't had a single migraine since.

Response times to this regimen appear consistent with the time course serum 25(OH)D response to dose of vitamin D3 developed by Dr. Robert Heaney, M.D.


Image Image


Although this is an uncontrolled observational survey with self reported information, the empirical data suggest a causal relationship between a vitamin D3 deficiency and cluster headache.  Moreover, the causal relationship is further supported by having CH'ers experiencing a lasting pain free response to this regimen stop taking supplemental vitamin D3.  Doing this results in a recurrence of cluster headaches after 7 to 8 days among chronic CH'ers... 

I've intentionally stopped taking vitamin D3 six times over the last 34 months as burn down tests of my 25(OH)D reserves.  The results have been the same every time...  My cluster headaches returned after 7 to 8 days without supplemental vitamin D3 and continued unabated until I resumed the anti-inflammatory regimen with a minimum of 10,000 IU/day vitamin D3 and usually a 50,000 IU loading dose.

I've bounced these survey results off Dr. Robert Heaney, MD.  Robert has been kind enough to mentor me on the pharmacokinetics of vitamin D3.  I've also used his rules for assessing studies of nutrient effects:

1.   The hypothesis to be tested must be that a change in nutrient status (not just a change in diet) produces the sought-for effect.
Taking 10,000 IU/day vitamin D3 resulted in 80% of participants experiencing a significant reduction in frequency, severity & duration of CH.

2.  Basal nutrient status must be measured, used as an inclusion criterion for entry into study, and recorded in the report of the trial.
25(OH)D serum concentration measured before and after

3.  The intervention (i.e., change in nutrient exposure or intake) must be large enough to change nutrient status and must be quantified by suitable analyses.
Minimum starting dose of vitamin D3 10,000 IU/day, 25(OH)D measured

4.  The change in nutrient status produced in those enrolled in the trials must be measured and recorded in the report of the trial.
25(OH)D 24.3 ng/mL before starting regimen... 79 ng/mL after

5.  Co-nutrient status must be optimized in order to ensure that the test nutrient is the only nutrition-related, limiting factor in the response.
Vitamin D3 cofactors at RDA included

I've prepared a manuscript of the survey results if you're interested.  Would you consider citing this unpublished manuscript at VitaminDwiki?
I'm sure you're aware that Big Pharma and the medical evidence mafia will attack the survey and results...
Thank you for your time,
Kind regards,
Pete "Batch" Batcheller.


Poster he presented April 2014

A Survey of Cluster Headache (CH) Sufferers Using Vitamin D3 as a CH Preventative (P1.256)
Peter Batcheller1
Neurology April 8, 2014 vol. 82 no. 10 Supplement 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 蠅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 蠅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

His update April 2015 - with supplement summary

Supplement Dose
Vitamin D3 (Cholecalciferol)10,000 IU/day
(Adjust as needed to keep serum 25(OH)D > 60 to 80 ng/mL)
Omega 3 Fish Oil1000 to 2400 mg/day
(Minimum of EPA 360 mg/day, DHA 240 mg/day)
Calcium220 to 500 mg/day (calcium citrate preferred)
Magnesium500 mg/day
(magnesium malate, magnesium glycinate or magnesium citrate)
Vitamin K2 (MK-4 & MK-7)MK-4 1000 mcg/day,
MK-7 200 mcg/day (MK-7 preferred due to half-life)
Vitamin A (Retinol)900 mcg (3,000 IU) for men,
700 mcg (2,333 IU) for women
Vitamin B 503 month course
Zinc 10 mg/day
Boron 1 mg/day

VitaminDWiki Agrees with most of the above, but


We're now pushing 700 users of this regimen and the efficacy is inching up towards 85% for a significant reduction in the frequency of CH from an average of 3 attacks every 24 hours down to 3 a week. We're still hold at 60% experiencing a lasting pain free response... If I can get to a few more of the non-responders and get them started on a regimen of benedryl (due to allergies) , I'm confident I can bump up both figures by at least another 5%.

Migraine Headaches associated with metal excess/deficiencies - July 2015

Compared blood levels of 25 with migraines to 25 without

Metal MigraineNo Migraine Ratio
Cadmium 0.36 ug0.09 ug 4X MORE
Iron0.97 ug0.48 ug2X MORE
Lead1.48 ug0.78 ug 2X MORE
Magnesium10.6 ug34.5 ug 3.5X LESS
Zinc0.24 ug 5.77 ug 24X LESS

Verbal update Nov 2016 - Curcumin helps

Addition of Curcumin helps many of those with cluster headaches who had gotten little/no benefir from Vitamin D, Magnesium, etc

See also web

http://www.clusterheadaches.com/
Austrailia forum discussion on this solution

Short url = http://is.gd/clustervitd

Attached files

ID Name Comment Uploaded Size Downloads
7708 CH Preventative Treatment Protocol for Neurologists - Jan 2017.pdf PDF 2017 admin 21 Jan, 2017 21:29 504.27 Kb 4232
3058 CH_hits_per_month.jpg admin 30 Sep, 2013 01:29 137.10 Kb 40951
3038 Cluster response.jpg admin 25 Sep, 2013 04:50 78.05 Kb 37490
3037 Replace.jpg admin 25 Sep, 2013 02:17 32.61 Kb 35026
3036 Cluster T1.jpg admin 25 Sep, 2013 00:44 57.97 Kb 40032
3034 Cluster F1.jpg admin 25 Sep, 2013 00:43 96.77 Kb 1075
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