Hey Don,

The vitamin D3 doses we're talking about here for CH are relatively small...  Some relapsing-remitting multiple sclerosis (RRMS) sufferers take 100,000 IU/day vitamin D3 with a half-million IU loading dose... 

They also test their serum concentrations of 25(OH)D, calcium, magnesium and parathyroid hormone frequently to know when to cut back on the vitamin D3 dose before they reach vitamin D3 intoxication indicated by hypercalcaemia, or hypercalciuria...

Regarding the safety of the anti-inflammatory regimen at 10,000 IU/day vitamin D3 with a weekly loading dose of 50,000 IU (Total of 120,000 IU/week vitamin D3) as a CH preventative... 

"During a 2010 study done at the Maastricht University Medical Center, Maastricht, The Netherlands, Fifteen RRMS patients were supplemented with 20 000 IU/d vitamin D3 (140,000 IU/week) for 12 weeks. Vitamin D and calcium metabolism were carefully monitored, and T cell characteristics were studied by flowcytometry. All patients finished the protocol without side-effects, hypercalcaemia, or hypercalciuria. The median vitamin D status increased from 50 nmol/L (20 ng/mL) at week 0 to 380 nmol/L (152 ng/mL) at week 12 (P<0.001).

Conclusion/Significance  Twelve week supplementation of high dose vitamin D3 in RRMS patients was well tolerated and did not induce decompensation of calcium metabolism. The skewing towards an anti-inflammatory cytokine profile supports the evidence on vitamin D3 as an immune-modulator, and may be used as outcome measure for upcoming randomized placebo-controlled trials."

Hope this helps...  I also hope you pass the beer test once you've gone PF...

Take care,

V/R, Batch

First I wanted to say my D level tested at 15. The Dr. put me on 50,000 units 3x a week for 3 months. It is D2 NOT D3 and eventually the side effects made me stop. I was on it for two months. My PDoc wanted me to take 3-4 grams of fish oil in addition to this. So for those worried about these doses I had two Drs. working on this even before we knew I had CH or was dxed with Migraines. (See my new here post for more if you like)

I am in cycle. I am miserable. I upped my D3 to 10,000 from 5,000 about a week or so ago intuitively and my energy increased and depression decreased. My cycle was not changed by D3 alone. I googled and ended up here. I read this thread (part of it) PM'd with Batch and went to Walmart. I am starting with 1 pill of fish oil as I am so sick to my stomach from coffee and water loading today. I am NOT taking a multi with k, boron, etc yet. It seems to effect my xanax and panic in a bad way.

I have no O2. I have limited state assisted insurance. So seeing my Neuro is not gonna happen right now. My abortives are a combo of reglan/toradol/zanaflex/tramadol. My prophylaxis med is Neurontin.

So this is my stash of supplements for now:

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The D3 is 5,000. The calcium has a little in it too and 633 mgs of calcium. The Turmeric is for pain and my skin disorder. I am not even sure I remember why I am taking E other than my skin disorder.


I am not in pain right now. I am shadowed a little with a numb left side of face and slight droop to my left eye. I have a trashed cervical spine so weird numbness and things like my jaw spasming or snapping shut of it's own volition are a daily reality for me. Surgery isn't an option till after my SSDI court date in July.

Here's to hoping I get some sleep and am not back up in two hours. I wanted to thank Batch again. I was really hopeless earlier the pain was creeping up to 9 and my nine is different than KIP. I reach the 'why me' phase much faster than the KIP scale and a 10 is me being carried from my house by EMT's to the ER screaming so loud my neighbors thought it was a cat dying and thrashing against the hospital bed so hard my legs and arms sported bruises for two weeks. Yah 10 for me is worse than surgery. At least Dilaudid worked for surgical pain.

--DF

Don,

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Patience grasshopper... 

Without the lab test for 25(OH)D, it's difficult to say how long it's going to take for a favorable response. 

As Bill indicated it can take up to six weeks at 20,000 IU/day vitamin D3 to elevate serum 25(OH)D concentration up to and near the lower end of the response range for CH at 60-110 ng/mL.  There are a lot of factors involved and the starting level of 25(OH)D is one of them...

The upper response curve dashed line in the chart below is just an estimate, but it should be close depending on your starting concentration of serum 25(OH)D.

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At 20,000 IU/day and a 50,000 IU loading dose once a week, I'm guessing 10 days to two weeks ± 5 days for a significant reduction in the frequency and severity of your CH... 

Stick with the above dosing schedule for now.  20,000 IU/day should work just fine.  If there's still no response by next Sunday, take another loading dose.

Try to get the lab test for 25(OH)D so we can anchor the curve... 

Regarding when to take the regimen...  It really didn't matter for me...  I tried it mornings, evenings and split between them...  Your choice...  Taking the calcium citrate tablets with a glass of lemonade might help as this tends to elevate arterial pH a little.

Regarding the GI disturbance...  skip the Omega 3 Fish Oil for a few days and see what happens...  If that stops the jet propulsion...  try taking one Omega 3 softgel every other day. 

We have natural flora and fauna (bacteria) living in our GI tract that actually aid in digestion.  Too much of one type and not enough of the other could be the reason for the GI tract disturbance...  Giving the GI tract a little time to adapt may be all that's needed. 

If the Omega 3 softgels are still causing problems after a week to 10 days, it's dealer's choice whether to continue taking it or skipping this part of the regimen...

Take care and please keep us posted.

V/R, Batch

woke up thank you alarm clock hit with another right side hit. WTF. Hey brain you are a left sider remember...Well it's gone now, no fade just poof gone. Right eye still not  perfect but nose is clear after crying for twenty minutes. So I upped the fish oil to two pills. Hubby bought me a bag of lemons for my ph level but they are hard as bricks, not even close to ripe. Since my first step this cycle is guzzling water I need to get some lemon in there. Then make coffee as soon as I can see, get my meds, then take my supps. This has been my last two or three days. I am not sleeping hardly at all at night. But being disabled and not working means I am lucky enough to be able to sleep when I can, when the pain goes away and I fall into bed exhausted. About ten am.  I know my PH is way off without the strips. My eating was horrible I was binging like mad thank you crazy psych meds. Soon as I upped my D3 I was in control. Hmmm something to this I think.


I have noticed little change except yesterday my alarm right side hit slithered over to the left side. Today no fade or slide just gone. So that is a plus.

So today

supps

10,000 units D3 - I may add another pill later if I keep getting hit

2 630 MG of calcium (so far the calcium isn't making the xanax not work. A big plus)

2 1200MG of fish oil (I have taken upwards of 5-6 G a day before without getting sick to my stomach. I think it's the D3 making me queasy.)

The thought of eating during or after a hit is impossible for me. I am using heavy cream in the coffee hoping it offers enough fat for the D3 to absorb. I can add coconut oil to it if I have to and Black Strap Molasses. Still not brave enough to go back on my multi yet. It destroyed the panic killing ability of my xanax last time.

Tammy,

That's a great question...  Vitamin D2 (ergocalciferol) and vitamin D3 (cholecalciferol) are two very different supplements.  The anti-inflammatory regimen is based on vitamin D3, the only free vitamin as it's easily made in our skin when exposed to the UV-B in direct sunlight.

Vitamin D2 will not help prevent your cluster headaches.  Take a look at the following link at the Vitamin D Council web site then call your doctor and tell him you want to switch to vitamin D3. 

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While you're at it, ask for the lab test for 25(OH)D, the serum level metabolite of vitamin D3.  The normal reference range for 25(OH)D is 30-100 ng/mL, but we've had CH'ers with active CH test as high as 55 ng/mL.

CH'ers who have gone pain free of their CH while taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and then gone in for this lab test have all come back with 25(OH)D concentrations of 60 to 110 ng/mL.

This is a very safe and very healthy regimen.  The doses of vitamin D3 suggested in this thread result in 25(OH)D concentrations well below the lower threshold for vitamin D3 intoxication of 200 ng/mL.

If you want to read more about vitamin D3 intoxication and related symptoms, read the following link...

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There are studies out now that say you would need a daily dose of vitamin D3 greater than 40,000 IU/day for several weeks to three months before reaching serum concentrations of 25(OH)D that would send your calcium metabolism into a warp.

Putting this in perspective, "As one of the safest substances known to man, vitamin D3 toxicity is very rare. In fact, people are at far greater risk of vitamin D3 deficiency than they are of vitamin D3 toxicity."

Regarding no hope for you...  Lose the thought...  The odds are in your favor that you'll have a favorable response to the anti-inflammatory regimen with 10,000 IU/day vitamin D3 in less than two weeks... 

Even then, if you reach two weeks without a significant reduction in the frequency and severity of your CH, bump the vitamin D3 dose up to 20,000 IU/day...  It's taken a few chronic CH'ers up to six weeks at 20,000 IU/day to go pain free...

Take care and please keep us posted.

V/R, Batch

Darkfire...

Interesting responses...  Not many CH switch-hitters so you're among a very elite group...  I suspect the situation will improve and you'll be PF in not too much time...

Don, hang in there...  Did you have a blood draw for the 25(OH)D lab test?

MM&I,  Thanks for the SITREP...  It's a wonderful feeling being PF that long isn't it? 

Regarding indulging on triggers...  There were times in the early 70's when... when I was younger, (and a lot more foolish), when the USS Hancock would pull into NAS Cubi Pt, in the Philippines after a month or more of round the clock flight Ops on Yankee Station off the coast of Vietnam...  when we would try to drink the San Miguel Brewery out of their Pale Pilsen...

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No matter how hard we tried, we were never successful, but we did end up with a condition the next morning, before CH so it wasn't a shadow... called a hangover...

As I recall it took several Cubi Specials the next day, a delightful concoction of orange juice, pineapple juice, mango juice, cranberry juice, grenadine and equal parts rum to start the healing process. 

That process also included munching on two or three Cubi Dogs, a wonderful hot dog with all the toppings, while simultaneously conducting ray recoveries and combat naps at the Cubi BOQ Pool...  No shortage of vitamin D3 in those days...

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By 1700 we were usually sufficiently recovered to don our Hong Kong made finest for another night's attempt to drink the San Miguel Brewery dry...

Hey Amy,  great news...  It's tough for an episodic CH'er to tell whether it was end of cycle or the regimen that made the pain go away... 

You've already figured out the best way to tell for sure by staying on this regimen...  Having said that, I think you'll find the anti-inflammatory regimen is a steal at 20 cents a day and well worth taking for the rest of your life...

Take care,

V/R, Batch

Tammy,

If your primary care physician ordered the 25-Hydroxyvitamin D, a.k.a. 25(OH)D lab test and the results were low, it would help to know the actual concentration.   It's usually expressed in ng/mL, but it's also occasionally expressed in nmol/L.  Your physician's office staff should be able to confirm the type of lab test and actual results.  Call them.

I'm not a doctor so you need to address taking vitamin D3 on top of vitamin D2 with your primary care physician. 

Again, there's a difference between vitamin D2 and vitamin D3.  What I can also say is CH'ers who have used the anti-inflammatory regimen to go pain free have all used vitamin D3...

"According to the latest research, D3 is approximately 87 percent more potent in raising and maintaining vitamin D concentrations and produces 2- to 3-fold greater storage of vitamin D than does D2. Regardless of which form you use, your body must convert it into a more active form, and vitamin D3 is converted 500 percent faster than vitamin D2. Vitamin D2 also has a shorter shelf life, and its metabolites bind poorly with proteins, further hampering its effectiveness. "  see the following link for more info:

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Take care and please keep us posted

V/R, Batch

Tammy,

Good on you for calling to get the lab results...  A 25(OH)D serum concentration of 22.2 ng/mL is clearly deficient.

The sooner you start taking vitamin D3, calcium, and the cofactor supplements the better...

Take care and please keep us posted.

V/R, Batch