Todd, Kudzu, Gregg, ClusteredChef, and Michael,

Thank you for the SITREPs and the results of your 25(OH)D labs while on the anti-inflammatory regimen.  This is really helping to define the optimum 25(OH)D range for CH'ers and the efficacy of this regimen.  That includes reports that "It's not working" or "No Change" as they help define the lower bounds.

I've been collecting data on 25(OH)D levels reported here at CH.com and by direct email with respect to CH activity for the last few months.   

For the CH'ers who were experiencing active CH attacks and had the lab test for 25(OH)D done either before starting this regimen or within a few days after starting it.  So far, all were ≤ 105 nmol/L (42 ng/mL).  In short, this data supports a general statement, that all of the CH'ers who reported their results of this lab test with active CH, were vitamin D3 deficient... 

Think about that for a minute... Is the relationship coincidental as most of us are vitamin D3 deficient unless we're supplementing or one of the outside trades out in the sun with skin exposed for several hours a day... or is the relationship causal? 

Could CH be like Rickets where a vitamin D deficiency or impaired metabolism of vitamin D3 causes a softening of bones in children...  or in our case, where something in the pathophysiology of cluster headache is enabled by the same deficiency or impaired metabolism of vitamin D3, magnesium, phosphorus or calcium?   You decide...

CH'ers who have gone pain free dosing on vitamin D3 at 10,000 I.U./day and had this test done after 30 to 90 days while on this regimen reported 25(OH)D levels in a range of 150 nmol/L, (60 ng/mL) up to 225 nmol/L, (90 ng/mL)...  Todd, you're in the zone...  Good on you... 

We still have exceptions...  One CH'er who has been working closely with his primary care physician and having his 25(OH)D as well as Chem panel and CBC tests done monthly, reported his 25(OH)D at 295 nmol/L (118 ng/mL) at the 90 day mark while dosing at 10,000 IU/day vitamin D3. 

As high as these levels may sound, they're well below the vitamin D3 intoxication threshold of 500 nmol/L (200 ng/mL).  Although he's not completely free of his CH, he's not lost any time away from work because of them and the few CH he does have are easily managed with oxygen therapy. 

We're learning a lot about the effect of this regimen on CH... and there's clearly more to be learned.  Time to a therapeutic response, (experiencing a significant reduction in the frequency and severity of their CH or going pain free), has been reported by most at between two days and three weeks with the majority experiencing relief from their CH by the end of the second week.  A few have taken longer.

We've also learned from a number of studies that we would need to take significantly higher doses of vitamin D3 than 10,000 I.U./day to reach the lower threshold for vitamin D3 intoxication. 

The Vitamin D Council at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or lists the toxicity threshold level at 500-750 nmol/L, (200-250 ng/mL).  Lots of great information about vitamin D3 and the cofactor mineral supplements on this site.

Another great site for vitamin D3 information is Grassroots Health at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Their home page features a plot of 3667 people who have had lab tests for 25(OH)D collected every six months during their participation in an international survey hosted by GrassRoots Health that started in 2008. 

The voluntary participants in this survey have been taking a range of vitamin D3 doses from zero to 10,000 I.U./day while having their 25(OH)D level tested every six months.  There's a $60 fee each 6 months for sponsorship in the 5 year project which includes a complete new 25(OH)D test kit, new questionnaire entry and reporting of results.

The most significant finding from this survey is all participants dosing at ≤ 10.000 I.U./day vitamin D3 have remained below the vitamin D3 intoxication threshold of 500 nmol/L (200 ng/mL) 25(OH)D.

I found the attached paper on Anticancer Research titled: Vitamin D Supplement Doses and Serum 25-Hydroxyvitamin D in the Range Associated with Cancer Prevention that used data from the GrassrootsHealth survey above.  It has a table that shows that over 300 participants have been dosing at 10,000 IU/day as illustrated in the graph on the GrassrootsHealth home page, many for more than a year at this point...  and all remain below the vitamin D3 threshold for toxicity. 

I've sent the authors of this paper an email asking for a breakout of participants dosing at 10,000 I.U./day with their 25(OH)D response curve over time in six-month increments as far out in months as the data supports... I'll let you know if and how they respond...

The raw efficacy of the anti-inflammatory regimen as a CH preventative is encouraging...  As of the end of October, nearly 100 CH'ers have reported starting this regimen here at CH.com, at ClusterBusters, or directly to me by email.  70% reported a significant reduction in the frequency and severity of their CH and most of them have gone pain free. 

Granted these results are anecdotal and some of the successes could be due to end of cycle or to a lesser extent, the placebo effect... as Michael pointed out.  Nonetheless, the dramatic change in quality of life experienced by the 70% while on this regimen is difficult to explain any other way...

9 CH'ers have reported it didn't work and stopped taking the regimen.  None of them reported having their 25(OH)D levels tested.  4 of these 9 gave up after two weeks.  2 of the 9 may have experienced allergic reactions to one or more of the anti-inflammatory regimen supplements.  The remaining 3 reported other medical problems.  It's possible that some comorbid conditions interfere with this regimen. 

It's comments like this that add more definition to the efficacy not to mention good reason to see your PCP or neurologist about this regimen.  And when you do, have the 25(OH)D and other labs done if you've been on this regimen for more than a month and have not experienced a reduction in the frequency or intensity of your CH.

The remaining 21% are still in the hunt.  They haven't experienced the same favorable response as the others, but they're still taking this regimen... and building 25(OH)D levels...  That implies a margin of uncertainty to the 70% efficacy of ±21% as these CH'ers could go either way...

The simple fact is we don't know if CH'ers in this category are going to respond more completely or not at all to higher 25(OH)D levels.  The good news is the Grassroots Health data appears to give us room to try without fear of experiencing vitamin D3 intoxication...

That said, even though dosing on vitamin D3 at 10,000 I.U./day is far less risky than taking verapamil, depakote (Valproic Acid), or the off-label anticonvulsants frequently prescribed to prevent CH... pushing 25(OH)D levels higher than 200 nmol/L (80 ng/mL) should be done under a physician's supervision with monthly labs for 25(OH)D, Chemistry Panel and CBC.

I think Michael hit on an important point...  Giving our body what it needs to combat CH may be a lot better than taking the more invasive prescription medications with onerous side effects to control the symptoms...

That brings me to the closing point... I'm just an old retired fighter pilot and not a doctor even though I did stay at a Holiday Inn a few years ago...  but I've learned a few things over the years that tend to keep life in balance...  A 70% solution is like low hanging fruit... if it works...  go for it and stick with it...  If you screw up...  unscrew it if possible... 

Moreover, one of life's more enjoyable moments for a pilot is walking out the door saying... "I'm out to launch" like Michael did... then take a sail plane up for a few hours of breathtaking circuits over the Alps... with only the sound of your breath and wind over the canopy in your ears... Awesome...

There's little in life that compares with strapping on an aircraft and slipped the surely bonds... as the prayer goes...  Flying through the sky leaving life's problems behind you on the ground does something to you... 

The joy of flying and sense of freedom it brings is so exhilarating it leaves you with a heightened sense of awareness... In that respect, it's a lot like going pain free from cluster headaches and knowing why... You're in control...

Thanks again and take care.

V/R, Batch

SD1,

The night CH attacks are a classic indication of low arterial pH and low oxygen levels.  When we sleep most of us go through a two hour cycle reaching REM sleep around an hour after falling asleep.  Not so strangely, that's when the CH hit...  The simple reason... and there are others...  is this, during sleep, our respiration rate drops to it's lowest with the smallest tidal volume of inspired breath... This results in less oxygen and a slight buildup of CO2.  For CH'ers, this is the perfect storm.

As CO2 disassociates into carbonic acid in blood serum...  this shifts the pH of arterial blood lower.  To make matters worse, a low arterial pH also limits the ability of hemoglobin to transport oxygen...  If you toss in a dietary condition or a comorbid condition that results in lower arterial pH, you're solidly behind the 8 ball and will get hammered.

Increasing the calcium citrate by a tablet or two and washing it down with lemonade will help elevate arterial pH.  There are alkalizing diets that will help as well.  See the chart for alkaline forming food types in the table at the end of the following link:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

As far as going in to see your doctor for a pH test...  it's a single shot in the dark that will only flag pH levels outside the reference range (7.35-7.45).  Our pH will flux widely throughout the day and from day to day. 

The best way I've found to track my pH is at home was using pH test strips to measure saliva pH.  It tends to parallel arterial pH but lags behind changes in arterial pH by 10 to 15 minutes, the time it takes the salivary glands to produce saliva from the blood stream.

I've an excel worksheet that will help track your daily average saliva pH by taking a measurement three times a day, morning before breakfast, around noon before lunch, and in the evening prior to going to bed.  When you average these three measurements you'll have a daily average.  Shoot me a PM with your email address and I'll send it to you.

The excel worksheet also has an entry for a pH measurement at the start of a CH attack and 5 minutes after completing an abort with oxygen therapy.  If you track your pH for a couple weeks you notice that as the daily average drops, the frequency of your CH will go up.  You'll also notice an increase in saliva pH (more alkaline) 5 minutes after you complete oxygen therapy.  All these entries will plot on another tab and will look like the following chart:

This chart covers a two week period where I took the three saliva pH measurements each day for my daily average saliva pH and also the pH changes associated with the first CH attack of the evening.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

The green line was my daily average pH.  The red line and dots represent saliva pH at start of a CH and the blue line and dots represent saliva pH 5 minutes after completing oxygen therapy.  The percentage figures represent the pulse oximetry readings taken upon waking with a CH and 5 minutes after completing oxygen therapy.

The link to PHION for the test strips follows:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Take care,

V/R, Batch

No, but I chewed through a half bottle of Tums one night trying to get my stomach pH and calcium levels up after running out of oxygen... 

Calcium carbonate is nearly as good as sodium carbonate as an antacid and tastes a lot better...  I've found the buffering properties of calcium citrate and citric acid from lemonade last longer...

I was one hurt'en scooter that night after falling asleep following a particularly onerous hit only to wake up two hours later with another equally nasty hit in progress to find the cylinder pressure gauge on zero... 

I'd pulled a Delta Sierra and fallen asleep with the cylinder supply valve open with the regulator set at 25 liters/minute... 

I switched from 8 E-size to three M-size cylinders on hand the following morning and picked up a demand valve later that week.  A demand valve is great in that respect...  no suck... no flow...

Take care,

V/R, Batch