Hell-Jee,

I'm not a physician or nutritionist... but I did stay at a Howard Johnson a few years back...

Seriously... all I can do is provide you information based on my experience with, and what I've learned over the last three years about vitamin D3, Omega-3 Fish Oil and the rest of the vitamin D3 cofactors: calcium, magnesium, zinc, boron, vitamin A (retinol) and vitamin K2 (MK-4 & MK-7).  Armed with this information, you can make your own decisions.

For starters, you've likely already discovered that most PCPs and too many neurologists have no real first-hand clinical experience treating patients with cluster headaches... That should be understandable... We suffer from an orphan disorder...  When patients present with a condition they've not treated previously... like cluster headache, most physicians use a cookbook approach with treatment recommendations from Standards of Care Guidlines...  Many of these guidelines are excellent...  That said, it all depends on when the cookbook (Guideline) was published...

Unfortunately, the same can be said for the benefits of nutrition and the use of supplements on the many health issues we face... 

This shouldn't be surprising either... Most medical school curricula provide an average of 1 hour on primary headaches and about the same amount of time on the use of nutrition as a mode of preventative and interventional treatments.

Furthermore, most of the exciting medical breakthrough discoveries in the last ten years have come as a result of molecular biochemistry at the cellular and nuclear level...  in short, rise of the genetic-based pharmaceutical companies...

To put this in perspective, the Human Genome Project wasn't declared substantially complete until April 2003 with sequencing of the last remaining chromasome not completed until May of 2006.

Getting back to the pharmacokinetics of vitamin D3, the real exciting stuff has come as a result of gold standard RCTs completed in the last five years and the use of vitamin D3 as a preventative for cluster headache didn't start until three years ago when I developed the basic anti-inflammatory regimen.

Moreover, until now, the only first hand information on the efficacy of vitamin D3 as a preventative for cluster headache has only been available here at CH.com.  Other sites like ClusterBusters and a couple cluster headache organizations in Europe have been watching.

Sooo... unless physicians have been taking CME specific to vitamin D3 and nutrition... they've likely never been exposed to the health benefits of vitamin D3 and the vitamin D3 cofactors.

With that as a preface... here's what I suggest.  VitaminDWiki provides the most complete and up to date compendium of all things vitamin D3 including excerpts, and links to the latest RCTs... 

For example, here's the link to the benefits of taking vitamin D3 to control cholesterol:

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The really cool thing about vitamin D3, 25(OH)D and 1,25(OH)2D3, (calcitriol), the active hormonal form of vitamin D3 is its capacity to stimulate genetic expression... 

In simple terms calcitriol triggers certain genes to produce products our bodies need to heal themselves and turn off genes to prevent them from making products that make us sick.

It's this capacity of vitamin D3 we think is responsible for the down-regulation/suppression of Calcitonin Gene-Related Peptide (CGRP) that studies have found elevated during cluster and migraine headaches. Dr. Peter Goadsby, M.D., one of the world's top cluster headache neurologists, conducted one of these studies.

In order to help make genetic expression happen, we need to supplement with adequate amounts of vitamin D3, calcium, magnesium, zinc, boron, vitamin A (retinol) and vitamin K2 (MK-4 & MK-7).  The following graphic provides a high level illustration of how this happens...

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You can find more about the synergy between vitamin D3, vitamin A and vitamin K2 at the following link:

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The founder of VitaminDWiki has been kind enough to post a web page on the use of vitamin D3 as a cluster headache preventative at the following link: 

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Proof Vitamin D Works - A list of links to RCTs studying the use of vitamin D3 to treat and prevent a long list of health problems:

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Finally, no discussion of vitamin D3 therapy is complete without discussing safety.  The following graphic tells the tale on safety of the doses we take.  Note that it's not just the dose but also the duration of dose that adds up...

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This graphic doesn't tell the whole story... It's not so much the dose and duration but rather how much 25(OH)D the body produces in response to these doses over time. 

Even that can be misleading as it's not the serum concentration of 25(OH)D that indicates toxicity...  It's the serum concentration of calcium... 

If you read through the papers on vitamin D3 toxicity you'll find there are no studies (RCT's) that intentionally set out to define the vitamin D3 dose and serum level of 25(OH)D that triggers a toxic reaction...  That would be unethical... 

Instead, they gathered data from cases of unintentional and accidental overdoses due to mislabeled or improperly prepared vitamin D3 that resulted in calcium serum concentrations above the normal reference range.  These cases were then used to approximate vitamin D3 dosing and 25(OH)D thresholds where a toxic reaction occurred as indicated by too much serum calcium and or too much calcium in the urine.

In nearly every case, authors reporting toxic levels build in a large safety margin...  For example, if the lowest threshold for vitamin D3 toxicity from any study (with or without peer review), was found to be 200 ng/mL, the "Safe" upper limit of the normal reference range is set at 100 ng/mL.

In short, the vitamin D3 experts, endocrinologists specializing in treating vitamin D3 deficient patients will say... vitamin D3 toxicity is very rare...

Finally, I've tried to put this on an apples to apples comparison of relative risk...  I was unaware of any deaths reported to the FDA over the last 9 years due to vitamin D3... so I checked a web site that tracks reports like this...  I think you'll find the following list an eye-opener...

From Q1 2004 to Q3 2012, (9 years), the FDA received adverse reaction reports on the following prescription medications and over the counter supplements:  Check out the following link to see for yourself.  Plug in prescribed and over-the-counter medications and supplements you’ve been taking… one at a time, to see what’s been reported to the FDA about these medications over the last 9 years. Click on the “Show More” button to see the entire list of adverse reaction reports for each choice.

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Prescription Medications Used To Treat Cluster Headache and Related Symptoms
Deaths due to VERAPAMIL                        229
Deaths due to DEPAKOTE                         168
Deaths due to TOPAMAX                            66
Deaths due to LITHIUM CARBONATE           56
Deaths due to LYRICA                              703
Deaths due to GABAPENTIN (Neurontin)    202
Deaths due to VALPROIC ACID                  194
Deaths due to BACLOFEN                         102
Deaths due to PREDNISONE                        513
Deaths due to PREDNISOLONE                     163
Deaths due to COUMADIN                           458
Deaths due to IMITREX                                 32
Deaths due to INDOMETHACIN                      18
Deaths due to OCTREOTIDE                       1317
Deaths due to CALAN                                  208
Deaths due to CLOMIPHENE CITRATE               8 Intra-uterine Deaths
Deaths due to PROPRANOLOL HCL                67
Deaths due to ATENOLO                              62
Deaths due to AMITRIPTYLINE                    184
Deaths due to PAXIL                                  357
Deaths due to LIPITOR                               865
Deaths due to CRESTOR                             238
Deaths due to NEXIUM                               357
Deaths due to AMBIEN                               243
Deaths due to PRILOSEC                                0
Deaths due to DIHYDROERGOTAMINE             0
Deaths due to OXYGEN                                  0

Over The Counter NSAIDs                  
Deaths due to NAPROXEN (Aleve)                142
Deaths due to ASPIRIN                               645
Deaths due to TYLENOL                              964
Deaths due to EXCEDRIN                            500
Deaths due to IBUPROFEN                           661

Over The Counter Supplements/Nutrients
Deaths due to MELATONIN                             0
Deaths due to MAGNESIUM OXIDE                  0
Deaths due to CALCIUM CITRATE                    Not Listed
Deaths due to BORON                                    Not Listed
Deaths due to VITAMIN A (Retinol)                 6
Deaths due to VITAMIN B (Complex)               2
Deaths due to VITAMIN B 12                          0
Deaths due to VITAMIN C                               0
Deaths due to Vitamin E                                 2
Deaths due to VITAMIN D3                             0
VITAMIN D3 TOXICITY                                   2
Deaths due to VITAMIN K                               2
Deaths due to VITAMIN K2                             Not Listed
Deaths due to ZINC OXIDE                             Not Listed

So there you have it...  The next time a nervous Nellie cries "Wolf" in a post about taking vitamin D3... at the doses we take in the anti-inflammatory regimen...  take a deep breath and remember the sage sayings...  Too much of anything isn't good... and... All things in moderation...

Good people of Clusterville... Our healthcare system is going down the dumper at a frightening pace...  The smart thing to do now is stay healthy.  The anti-inflammatory regimen is a very safe regimen with health benefits that go well beyond preventing cluster headaches.

And if you do get sick and need to see a doctor... be informed... Ask for an explanation of any prescribed medication including side effects.

Take care,

V/R, Batch

LAW,

Good question.  The short answer is yes, body mass does make a difference in dosing with vitamin D3.

That said, there's also variation in response to dose.  That makes taking a disciplined approach by seeing your PCP or neurologist to discuss the anti-inflammatory regimen and ask for the lab test of your 25(OH)D serum concentration.  Be sure to tell your PCP or neurologist you want to take vitamin D3 and not D2.  Some physicians will want to control this regimen by writing you a prescription for vitamin D2...  Be prepared to push back if this happens...  Vitamin D3 is roughly two times more effective than vitamin D2...  See the following links for details:

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Getting your 25(OH)D tested regularly (once a month) is a good idea until you reach a stable serum concentration in the "Green Zone" (60 to 110 ng/mL).  This is the range of 25(OH)D lab results reported by CH'ers who respond favorably to this regimen.  After that, get a 25(OH)D lab test once a year or if you fall out of remission...

The following chart developed by Dr. Robert Heaney, MD, illustrates the "average" 25(OH)D response to dose of vitamin D3 over time.  I've overlaid this chart with color bands.  The red band represents the range of 25(OH)D lab results taken before starting this regimen and the green band represents the range of lab results taken after a significant response to this regimen.

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If you follow the top curve for a dose of vitmain D3 at 10,000 IU/day, you'll see it takes weeks for the average person to reach the green zone assuming the starting serum concentration of 25(OH)D is low.

As the goal of this regimen is to elevate 25(OH)D into the green zone and keep it there in order to prevent cluster headache, getting there as fast and safely as possible is a reasonable approach.

Several CH'ers have used an accelerated dosing schedule of 20,000 to 25,000 IU/day vitamin D3 plus a loading dose of 50,000 IU vitamin D3 once a week on top of the daily dose to elevate their 25(OH)D serum concentration into the green zone as rapidly as possible.

For reference, a 50,000 IU loading dose is common and considered conservative...  If the vitamin D3 loading dose is computed based on weight and a final serum concentration of 70 ng/mL, the loading dose can range from 100,000 IU/week for a 150 lb person to 140,000 IU/week for a 200 lb person.  See the following link for additional details:

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It's important to get another lab test for 25(OH)D after a month on any accelerated vitamin D3 dosing schedule.  At that point you can adjust the vitamin D3 dose accordingly. 

If you're unable to get this second lab test at that point, it's prudent to drop back to a maintenance dose of 10,000 IU/day. 

As you can see from the chart above, a 10,000 IU/day dose of vitamin D3 should eventually result in a stable 25(OH)D serum concentration around 85 ng/mL. That's the optimum serum concentration for CH'ers.  It also provides sufficient reserves in the event of a viral infection (colds, flu) which can cause your immune system's T-Cells to deplete 25(OH)D rapidly in response to the viral infection and still leave enough to prevent CH.

If 10,000 IU/day vitamin D3 elevates your 25(OH)D above 90 ng/mL, drop the vitamin D3 dose to 8,000 IU/day and test again after a month.  This is called "tuning" the regimen. 

The half-life of 25(OH)D at these serum concentrations is likely little more than a week so 25(OH)D levels can drop rapidly... It's easy (and a lot less painful) to lower serum 25(OH)D concentrations than it is to raise them...

As with any treatment, if you experience any serious problems/reactions, stop the regimen and see your PCP or neurologist. 

The most common reported side effects are an upset tummy and loose bowel.  The upset tummy is usually due to the Omega-3 Fish Oil, and the loose bowel is due to magnesium which has a known side effect of osmotic diarrhea if too much is taken.

If either of these side effects occur, stop taking the Omega-3 Fish Oil or Magnesium supplements as appropriate until the side effect clears.  Wait a few days to a week then add back half the original dose.  This is also part of the regimen "tuning" process.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Hey Jair,

Yes I remember you and sorry I missed your last post...  I took the complete anti-inflammatory regimen with 10,000 IU/day vitamin D3 for two years and my highest 25(OH)D serum concentration was 85 ng/mL in mid summer.  Over the last year I've increased the dose to an average of 15,000 IU/day and my last 25(OH)D lab test was 92 ng/mL.

Even though you're taking 10,000 IU/day vitamin D3, it's still prudent to see your PCP for the 25(OH)D lab test at least once a year.

Take care and please keep us posted.

V/R, Batch

Hey Sue,

Good questions and thanks for the clarification...  373 nmol/L 25(OH)D, (149.2 ng/mL) is a little high... but no big deal as long as your total calcium stays within the normal reference range.  The important thing is staying PF...

To convert nmol/L to ng/mL, divide by 2.5

The half-life of 25(OH)D is much shorter at higher serum concentrations, i.e., it drops rapidly without supplementation. 

Accordingly, dropping your vitamin D3 intake to 15,000 or 10,000 IU/day should bring your serum concentration of 25(OH)D down just fine. 

Drop your vitamin D3 dose to 15,000 IU/day for a week.  If there's no breakthrough recurrence of your CH... drop your vitamin D3 intake to a maintenance dose of 10,000 IU/day.  It can take two to three weeks to stabilize.

As always, check with your PCP after a month at the lower dose to make sure your 25(OH)D is near 85 ng/mL, (212.5 nmol/L).

Hope this helps,

Take care,

V/R, Batch