Chris,

Sorry this regimen hasn't been effective for you...  It's entirely possible it won't for some reason...  There are no absolutes except for death and taxes, and the CH is clearly not an exception when it comes to preventatives. 

From my earlier post today, the efficacy of this regimen as a CH preventative is 88% for episodic CH'ers and 66% for chronic CH'ers.  In going over your posts for the last seven months it appears you're either chronic or about to be so.

Brew brought up a good point on the units of measure used in your 25(OH)D lab results.  However, from your earlier posts and the fact you live here in the US where most diagnostic labs measure 25(OH)D in mass (ng/mL), rather than molarity, (nmol/L), I'll assume your results are in ng/mL.

It also appears you've been taking the cofactors and tried the higher vitamin D3 dosing strategy at 20,000 IU/day to no avail.  I'll also assume you've access to sufficient oxygen to abort your CH.  Have you tried taking some vitamin A?  Being an old foggy, I take a Centrum Silver tablet a day as this multivitamin is also formulated with vitamin A and vitamin K.

All this leads me to a few questions and suggestions.  What's the frequency and severity of your CH?  What's the wake/sleep spit in occurrence? Basically, what is your quality of life with cluster headaches?

For well over five years after I turned chronic, I was content to use oxygen therapy at flow rates that support hyperventilation ~ 40 liters/minute, as my only CH intervention. 

I'd tried all the mainstream preventatives.  I found the risk|reward ratio for these medications unacceptable and the side effects onerous... so I stopped taking them completely.

I accepted the fact that I had CH and as the majority of my aborts with this method of oxygen therapy were under 7 minutes, the quality of life was reasonably good...  until I found vitamin D3 was so effective in preventing my CH.

What keeps me motivated now is trying to figure out why this regimen doesn't work for some CH'ers.  What I've noticed so far is the relationship between a non-response to this regimen and the existence of one or more comorbid medical conditions.  Some of these comorbid conditions may be subclinical or asymptomatic.  In other words, you could have one and not know it's there as you feel fine.

One of the more common comorbid conditions reported by CH'ers who don't respond to this regimen involves a thyroid and or parathyroid insufficiency.  The hormones from these two endocrine organs play essential roles in calcium homeostasis and vitamin D3 metabolism.

Hepatic and renal insufficiencies can also be a problem as vitamin D3 is first metabolized in the liver to 25(OH)D and then in the kidneys to 1,25(OH)2D3.

As your 25(OH)D response to vitamin D3 appears normal, I think it's relatively safe to say your liver appears to be working just fine...

I'm not a doctor so would suggest you see an endocrinologist for a complete workup.  Finding an endocrinologist who will work with you to run down all the possible avenues of interference with vitamin D3 metabolism would be great.

If you find your calcium and parathyroid levels are within the normal reference range, it might be worth pushing your serum concentration 25(OH)D a little higher...

There's a handful of chronic CH'ers who didn't experience a significant favorable response in their cluster headache patterns until they elevated their serum concentration of 25(OH)D up to and above 110 ng/mL.
 
The lower threshold for vitamin D3 intoxication, (indicated by higher than normal calcium levels), is 200 ng/mL, so you've still got a significant safety margin to explore.  From the available RCTs on this topic, it would take a sustained vitamin D3 dose greater than 40,000 IU/day to encounter vitamin D3 intoxication.

Take care, hang in there and please keep us posted.

V/R, Batch

Fred,

The short answer is yes...  The cutaneous vitamin D synthesis from solar radiation is the only "free" vitamin...  Spending more time in the summer sun will increase the production of cutaneous vitamin D3.

That said...  it needs to be quality time near mid day (10 AM - 2 PM) during the summer months clad in a bathing suit without any sun block.

10 minutes a side should be sufficient to generate the equivalent of 15,000 to 20,000 IU of cutaneous vitamin D3.  Any more time than that and the risk of skin cancer starts going up...

The other rule of thumb is if you get a sun burn in 20 minutes, don't stay exposed for more than 10 minutes a side if reclined.

I lived in Northern VA not far from Alexandria in Lake Ridge...  I also used to frequent some of the watering holes near the Torpedo Factory and found the cuisine at Le Gaulois better than average...

That said, there's not enough high angle sun at that latitude for five to six months of the year...

Skin type also plays a role...  See the following link at the Vitamin D Council for a more detailed explanation...

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

Take care,

V/R, Batch

Adamt,

Thanks for the wonderful update...  That said, I'm confident the odds are high your doctor will get his or her knickers in a wad and place me on some kind of shit list when you say you came off the Rx med's for CH without first consulting with him or her.

I'm not worried about me...  but I do want you to be able to ask for the lab test for 25(OH)D without running into a hornet's nest response.  Perhaps you can ask for the 25(OH)D lab test first and have the script in hand before you say you stopped all the other CH med's.

In the long run it's better for all of us if we can coax and cajole the PCPs and neurologists who treat us into thinking outside the box on the apparent causal relationship between a cessation of CH and a serum concentration of 25(OH)D elevated into a range of 60 to 110 ng/mL.

The sooner they find this method of preventing CH is effective, the sooner they'll have another arrow in their quiver to treat the next nubie who presents with CH.

In regard to telling your friend with migraines about this regimen...  Go for it... but please tell him to ask his PCP or neurologist for the 25(OH)D lab test. 

The sample size of migraineurs I'm tracking who are taking this regimen is small, but the efficacy is 100%.  So far every migraineur who has started this regimen has stopped having migraines.

Take care and please keep us posted.

V/R, Batch

Hey Darrell,

Good question.  The lab results you've listed sound like they're coming from a Basic Metabolic Panel (CHEM-8).  If you look at the printout of your lab results they should appear under a banner (panel) grouping titled Chemistry Panel and or CBC.

The lab test for serum vitamin D3, (cholecalciferol), is a bit of a canard or half-duck, as it's not really a vitamin and not yet a hormone...  That said most medical diagnostic labs list the test for vitamin D3/25(OH)D in their endocrine/hormone panel.  Ask your PCP or neurologist for this lab test at the next opportunity.

What's actually measured or assayed is the serum concentration of a vitamin D3 metabolite, 25-Hydroxyvitamin (D2+D3), a.k.a. 25(OH)D or calcidiol.

Most US medical diagnostic labs will list the normal reference range for 25(OH)D as 30 to 100 ng/mL.  Less than 30 ng/mL (75 nmol/L) is considered insufficient/deficient...  A 25(OH)D serum concentration greater than 100 ng/mL, (250 nmol/L) is considered excessive...  and unexplored... 

It's kind of like the early nautical charts used and created by explorers in the 1400s...  The margins were frequently annotated with "Beyond here there be dragons... "

There are several studies that have concluded it would take a 25(OH)D serum concentration greater than 200 ng/mL, (500 nmol/L) to reach the lower threshold of vitamin D3 toxicity... 

This is where the serum calcium and PTH (parathyroid hormone) lab tests would come into play as vitamin D3 intoxication would be clinically indicated by a serum calcium concentration above the normal reference range.  PTH would also be at the low end of its reference range or below...

What we need as cluster headache sufferers, in order to remain pain free, is a 25(OH)D serum concentration of 60 to 110 ng/mL.  From the empirical data I've collected to date, at least 80% of us on the anti-inflammatory regimen will be CH pain free in this range. 

That said, I've a couple chronic CH'ers with intermittent CH attacks, pushing the outer limits of the anti-inflammatory regimen with vitamin D3 intakes of ≥25,000 IU/day and significantly higher concentrations of 25(OH)D...  One at 130 ng/mL, (325 nmol/L) and the other at 160 ng/mL, (400 nmol/L). 

Both are doing this under close medical supervision with labs every two weeks.

At this point neither of them has had any indications of vitamin D3 intoxication... Nonetheless, their endocrinologists are running around with their radars in high PRF mode and sonars actively pinging like nervous Nellies...  So far... No dragons...

Take care and please keep us posted,

V/R, Batch

Darrell,

Good move on getting the lab test for 25(OH)D... 

What you're looking for in the Omega 3 Fish Oil is the available EPA (Eicosapentaenoic Acid) and DHA (Docosahexaenoic Acid) per serving size.  These are the two fatty acids that have the best anti-inflammatory properties... They also help lower total cholesterol...

Any serving size of Omega 3 Fish Oil, usually two liquid softgel capsules, should contain at least 360 mg EPA and 240 mg DHA per serving.  After that, calculate the cost per serving at these EPA and DHA values for the best bang for the buck.

I've done that and the Nature Made™ Omega 3 Fish Oil has the best bang for the buck at Costco.  Otherwise take a calculator with you when you go shopping...

Take care,

V/R, Batch