Just wondering whether anyone on this site who suffers from CH has ever checked their Vitamin D and Calcium levels.

I am a long term (25 year, 2 cycles p.a lasting about 2-3 months per cycle) episodic CH sufferer and insisted on a medical last year.

Bloods revealed virtually no Vitamin D, inability to absorb calcium as a result, which has lead to Osteopaedia, due to an inability to absorb fat all as a result of an inefficient pancreas.  

I am now on Creon (pancreas extract) and 3 monthly Vitamin D boosts.  I am only 43 y.o and the 25% loss of height in my vertibrae (spine) suggests I have had this deficiency most of my life.

The good news is I have not had a CH for over a year now.  A first for me in 25 years.

Perhaps Vitamin D deficiency has something to do with it or perhaps I am only hoping?  Also have saved $5000 on Imigran (Imitrex) injections over last 12 months!   :) :)

Glad to hear it is working for you. There have been some preliminary reports that a calcium/D combo helps with migraine - that research is not very solid in and of itself, but it might be pointing to something that is real. Too bad that there aren't more studies, but it is something to consider - some people might benefit from such a regimen.


Quote:

Headache. 1994 Nov-Dec;34(10):590-2.    Alleviation of migraines with therapeutic vitamin D and calcium.    Thys-Jacobs S.    Two postmenopausal migraineurs who developed frequent and excruciating migraine headaches (one following estrogen replacement therapy and the other following a stroke) were treated with combination vitamin D and calcium. Therapeutic replacement with vitamin D and calcium resulted in a dramatic reduction in the frequency and duration of their migraine headaches.    PMID: 7843955 [PubMed - indexed for MEDLINE]

I have a severe vitamin D/ calcium/ potassium/ magnesium/ iron/b12/folate etc etc etc deficiency. To the point it's been considered life threatening on many occasions as people here know all too well! I'm currently on literally toxic doses of all of them.

I have noticed and commented here that when I've been dangerously low on these my hits have stopped and when I start to recover they return. I definitely believe there is a correlation however I also the the "cure" is infinitely worse than the condition!

A hit I can abort - the deficiencies have come close to aborting me!

My pancreas is fine - the cause for my problems is different. What type of vitamin D do they have you on?

I take a magnesium supplement at my neuro's suggestion, who also told me if I take Magnesium I should add a calcium/D supplement, which I do. I'm convinced it's reduced the intensity and frequency of my cycles.

Joe

When I had my hysterectomy in 2000 I was advised a year latter to go onto calcium and Vit. D. at a large dose to prevent osteperosis.  I have not had a ch since.  Howver, I am on a great prevetative and it could be attributed to that also.

that's interesting!i was thinking to ask the same question about vitamin D Defficiency!these tests i am taking the last month!
I am 28 years old.Male.chronic 15 years

here are the results
                                                                               normal
25(OH) Vitamin D3           10.5ng/ml                             20-32ng/ml

GP asked to repeat the test along with others
as he said that it's strange for these rates at this age

so next results came up two weeks later and picked them up just yesterday are

25(OH) Vitamin D3           8.18ng/ml                             20-32ng/ml

others
as PRL,TT3,T4,TSH,TPO,PTH,IN.PHOSPHORUS,TG and CALCIUM
came up normal (dont ask what are these.I have no idea :D)

Now i am at the point where i have to make an appointment with an
endocrinologist.I ll keep u informed.

This last cycle i had massive cravings for milk!

Never thought of it as anything CH realated.

I'm going to get some Calcium and vitamin D supplements today.

Doesn't matter if its related or not...still good for ya :)

I've got low vitamin D levels. For me, supplements do nothing.

How do I know this? We tried for 6 years to give me different supplements, my body flushes the stuff right out.

I -had- juvinille osteoporosis, from the age of 9. Only disocvered it at 14. Rickets was discovered at 16.

I hate my body. DX

Pixie-elf wrote on Mar 13^th, 2009 at 9:17pm:

. For me, supplements do nothing.

In other cases, the problem is that the kidneys and liver don't convert the dietary forms of vitamin D to the really good activate forms.  Ordinary vitamin D from the diet has only 1/10th to 1/25th of the activity of the transformed versions.  

monty wrote on Mar 13^th, 2009 at 10:02pm:

Pixie-elf wrote on Mar 13th, 2009 at 9:17pm: . For me, supplements do nothing. In other cases, the problem is that the kidneys and liver don't convert the dietary forms of vitamin D to the really good activate forms.  Ordinary vitamin D from the diet has only 1/10th to 1/25th of the activity of the transformed versions.

Hmm...What about the vitamin D that has to do with getting sunlight? Even doing that, it didn't change anything.

I know Endocrineology tried me on whatever they could, and did tests to try to figure out the problem but just wound up deciding it was most likely part of my autoimmune disorder. (Which they still haven't figured out. 10 years and no progress on that end.)

I dont remember ever having my calcium or vitD levels tested, but I do take supplements of both as I've been on prednisolone/steroids for over 5 years. My calcium supplement was recently increased, can't say that it helped my CH.

Hi,

Calcium helps to alleviate muscular tension (as well as build bones, teeth, maintain healthy gums, a regular heartbeat & transmission of nerve inpulses)
A deficiency in Magnesium may cause migraines, as it relaxes muscles & blood vessels.
The body needs vitamin D to properly absorb calcium (sunlight causes vitamin D to be synthesized by the skin). A lack of vitamin D in turn affects the body's ability to absorb calcium & phosphorus (osteomalacia or rickets).This may affect people with malabsorption problems, not enough sunlight or a diet so low in fat that adequete bile cannot be manufactured & vit. D cannot be absorbed.

Any hoot, since being diagnosed w/CH. I have been taking this "potion" & is seems to be making a difference. Please take note that an excess of some vitamins, such as A can have dire consequenses. Read the labels, getting a book is better.
My vitamin Bible is "Prescrition for nutitional Healing:
by Phyllis A. Balch, CNC & James F. Balch, MD

I take: One source Complete Multi W/Ester C
          High Potency B-Complex w/ Folic Acid
          Magnesium 500 mg
          Vit. C 2000 mg
          Vit. D 1000 mg
          Selenium 200 mg
Hope this helps.

Deb [smiley=headbanger.gif]

I have a condition that CH is related to, but the jury is still out on that part.

I asked my doc to test my vit D levels, and they came back as practically non-existent. It was causing me all kinds of issues, extremely low energy levels, pain, tiredness, depression, little calcium absorption and an inability to get rid of a chronic sinus infection. My doc told me to take 1000 units a day and after 3 months increased it to 2000 units a day. I was taking D-3.

I also added calcium to it, twice the recommended dose, and it had 400 units of D in it. I also started on Centrum silver, which has 500 units of D in it, along with a bunch of other stuff. I also take a high potency B complex, vit B-12, 500 mcg x 3 a day. Along with fish oil capsules. All with my doc's approval.

My vit D level went back up to normal, and he is keeping me on 1200 to 2000 units per day still. I started feeling better after a few months, and even better when I increased the D and got back to normal.

I didn't notice any different in the amount or frequency of my hits, although I did go into high cycle while taking this. I believe it was more stress related.

If you are getting a blood test, ask  your doc to test for D. I'm maintaining my level currently, by keeping on the prescribed dose.

I have a theory that in the winter, part of the winter blues could be caused by a vit D deficiency due to lack of sunlight. No proof, just a theory.

There is a new study out on how vital vitamin D is to the body.It was just published last week. It plays a much bigger role than originally
thought. If I can find it ( I have it somewhere, damn it!)  [smiley=ohjez.gif]                     I will post it.

Deb

Yeah after hearing a story on NPR about how most people (in Amreica at least) have a serious vitamin D deficency I started to take some suppliments. I am not in cycle so i have no idea how it affected this, but I cna tell you I've never been sicker in my life the last 6 months and within two months of taking it I am starting to feel much better and I think it has something to do with the D.

The stuff is cheap, it is hard to take to much and it tastes good (I got a liquid).

For what it is worth.

i found it!
Exciting new research suggests that vitamin D may offer protection against some types of cancer, including breast and prostate cancers and, in particular, colorectal cancer. How vitamin D fights cancer isn’t known for sure, but it “helps reduce cell proliferation and differentiation, and it may reduce inflammation,” says Edward Giovannucci, M.D., professor of nutrition and epidemiology at the Harvard School of Public Health in Boston. Giovannucci, whose work has reported increased risks of digestive system cancers among people with low vitamin D levels, threw down the gauntlet in a keynote speech at the American Association of Cancer Research in 2004. “I would challenge anyone to find an area or nutrient or any factor,” he said, “that has such consistent anti-cancer benefits as vitamin DResearch is also revealing vitamin D’s promise in autoimmune disease. For example, a sufficient level of vitamin D may confer some protection against developing multiple sclerosis (MS), a neurologic disease affecting over 2 million people worldwide. Last year, in a study based on blood samples from more than 7 million military personnel, researchers from the Harvard School of Public Health found that those with the highest blood levels of the vitamin were 62 percent less likely to develop MS than those with the lowest vitamin D levels.Experts are not sure about how vitamin D protects against autoimmune diseases, but believe that it may serve as a brake on the overactive immune cells. “Vitamin D may decrease the development of type 1 T-helper cells,” explains Charles Stephensen, Ph.D., a research scientist at the USDA’s Western Human Nutrition Research Center at the University of California, Davis. These cells are involved in protective immune responses, “but they may also initiate autoimmune disease, especially in people who may have a genetic predisposition.”

Deb

Great post Deb., as I've mentioned before, I'm convinced my regimen of magnesium, calisum and vitamin D has reduced both the frequency of my hits during a cycle, and the intensity of those hits. My case is strictly anecdotal, hardly qualifies as a "publishable medical study" but I've seen enough similar posts that I'm not stopping this regimen anytime soon.

Joe

just started vitamin D3 pills a few hours ago but i need some help.
I have to take one pill of 0.50 mcg once a day.
Unfortunately i can't understand the quantity if it is too much or too little.what is mcg and how much is it in mg??should i increase it?
The doc was not much of co operative and if anyone can help me with this it would be deeply aprecciated.i am tired and fed up with the doctors :(

purpleydog wrote on Mar 14^th, 2009 at 7:28pm:

I have a theory that in the winter, part of the winter blues could be caused by a vit D deficiency due to lack of sunlight. No proof, just a theory

Quite plausible.  The seasonal influenza patterns are linked to sunlight/vitamin D, and it appears that supplementing with D greatly reduces the risk of flu.


Quote:

J Nutr Health Aging. 1999;3(1):5-7.    Vitamin D vs broad spectrum phototherapy in the treatment of seasonal affective disorder.    Seasonal Affective Disorder (SAD) is prevalent when vitamin D stores are typically low. Broad-spectrum light therapy includes wavelengths between 280-320 nm which allow the skin to produce vitamin D. This study was designed to test the hypothesis that vitamin D deficiency might play a role in SAD. A prospective, randomized controlled trial was conducted in a group of 15 subjects with SAD. Eight subjects received 100,000 I.U. of vitamin D and seven subjects received phototherapy. At the onset of treatment and after 1 month of therapy subjects were administered the Hamilton Depression scale, the SIGH-SAD, and the SAD-8 depression scale. All subjects also had serum levels of 25-hydroxyvitamin D (25-OH D) measured before and 1 week after intervention therapy. All subjects receiving vitamin D improved in all outcome measures. The phototherapy group showed no significant change in depression scale measures. Vitamin D status improved in both groups (74% vitamin D group, p < 0.005 and 36% phototherapy group, p < 0.01). Improvement in 25-OH D was significantly associated with improvement in depression scale scores (r2=0.26; p=0.05). Vitamin D may be an important treatment for SAD. Further studies will be necessary to confirm these findings.

I take D3 as well. I am unsure the practical real-world difference in 3 or 2 though

Anyone?

I think that D3 is closer to the mammalian form, but both have vitamin D activity. D2 is ergocalciferol, from fungi.

Vitamin D2 is ergocaliciferol, which comes from food sources.
Vitamin D3 is cholecalciferol, which is synthesized by the skin, in response to the suns ultra violet rays; and a synthetic form identified as vitamin D5. Of the three, vitamin D3 is considered the natural form of vitamin D and is most active.

Deb

wrote on Mar 20^th, 2009 at 11:13am:

Vitamin D2 is ergocaliciferol, which comes from food sources. Vitamin D3 is cholecalciferol, which is synthesized by the skin, in response to the suns ultra violet rays; and a synthetic form identified as vitamin D5. Of the three, vitamin D3 is considered the natural form of vitamin D and is most active. Deb

Almost.  D3 is also present in some foods - fish, animal liver. And from our own skin when get sunlight.

D2 is from plants and fungi, although plants are pretty poor source on the whole, and the common button mushroom won't have much unless it is grown with lots of light. But there are yeasts and other mushrooms that do contain a good dose of D2.

Some have suggested that D2 is inferior to D3. There could be subtle differences, I am not sure. But if it is labeled as vitamin D, it has vitamin D activity.


Quote:

ust started vitamin D3 pills a few hours ago but i need some help. I have to take one pill of 0.50 mcg once a day. Unfortunately i can't understand the quantity if it is too much or too little.what is mcg and how much is it in mg??should i increase it?

Usually, vitamin D is measured in IU, not milligrams. This is because different forms have very different weights. The IU is a measure of activity, not weight.

The daily allowances or their equivalents are usually between 200 to 600 IU per day. Elderly people who don't get much sun are often told to take 1000 IU.  I take 2000 or 3000 IU a day for flu prevention/bones/heart care.

Getting 15 minutes of full body sun will result in much higher doses (I don't remember the amount - 15,000 or 100,000 IU come to mind, but not sure).  After 15-30 minutes of sun, exposed skin maxes out production, so regular moderate exposure is better than occasional longer exposure.  

Thanks to all for replying to my original question.

I am amazed at how many CH sufferers have a serious Vitamin D deficiency. -  Maybe too much of a coincidence to ignore, however many people do have this D3 deficiency.  I would be interested in a study that measured the incidence of D3 deficiecny in CH sufferers v the incidence of D3 deficiency in non CH sufferers.  It would be the only way to measure.

It is thought that CH sufferers have a "faulty" hypothalamus, which is the body's regulator.  Perhaps the deficiency of a critical element such as Vitamin D can cause this hypothalamus irregularity.

My Vitamin D levels were pracitcally non-existent.  I was placed on a massive Vitamin D boost (100,000? or 500,000? units in liquid syringe form orally taken) every 3 months and also a daily tablet of 1000 IU D3.

I was not put on this to cure CH.  It was put on it to extend my lifespan.  ie - No Vitamin D = cancer, osteoporosis, depression, lethargy and certain premature death.

I guess I am still hoping it has something to do with CH as I have not had an attack for over 1 year now.

Thanks

Loads i agree with you.Maybe there is something here with D defficiency that should be studied further more.And to tell the truth
i hope this proves to be my magic bullet

On the other hand sorry if i mess with your topic but i just did some math and i cant understand what's going on.
According to this page
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and this
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i am taking 0.50 μg of alfacalcidol(1α - hydrovitamin D3)
0.50μg = 0.50 mcg = approximately 20 IU once per day(maybe)

is it my idea or does this sound ridiculously low???? :(
i paid 200 euros for blood tests and i get the feeling that doc doesnt even bother to treat me seriously  >:(

Black, I think your Maths is right.

My bottle says:  each tablet contains 25mcg cholecalciferol (equivalent to D3 1,000 IU)

As I said, my 3 monthly boosters are either 100,000 IU or 500,000 IU (cant remeber which) and I take 1,000 IU in tablet form daily.

You are taking 20 IU daily? Seems strange to me, but I am not a doctor.

black wrote on Mar 20^th, 2009 at 7:24pm:

Loads i agree with you.Maybe there is something here with D defficiency that should be studied further more.And to tell the truth i hope this proves to be my magic bullet On the other hand sorry if i mess with your topic but i just did some math and i cant understand what's going on. According to this page START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and this START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE i am taking 0.50 μg of alfacalcidol(1α - hydrovitamin D3) 0.50μg = 0.50 mcg = approximately 20 IU once per day(maybe) is it my idea or does this sound ridiculously low???? :( i paid 200 euros for blood tests and i get the feeling that doc doesnt even bother to treat me seriously  >:(

From this page (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE), your math looks right. 5 micrograms = 200 IU, so 0.5 micrograms = 20 IU.  

But I think something else may be going on - you might be using a semi-synthetic form of vitamin D that is longer lasting and more powerful.  Check on that first - in a few studies I have found on alfacalcidiol, the doses used were quite low (0.25 - 1 micrograms), yet there was a change in bone density, blood calcium, etc.   I know for psoriasis, there are semi-synthetic forms that are used in incredibly small amounts, because those just keep bouncing around in the body hitting the vitamin D receptors while regular vitamin D gets inactivated.    

Thanks both of you!
I guess i 'll stick with this dosage for the next three months and then i ll take another test to see how it is going.Hope this works for ch :-/    

Has anybody else tried a Vitamin D 500,000 IU shot for cluster headaches?

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cluster wrote,

Has anybody else tried a Vitamin D 500,000 IU shot for cluster headaches?


G,day All,
I'm certainly confused [smiley=confused.gif] this time.
500,000iu of vitamin D taken all at once. Have i got hold
of the wrong end of the stick.?

Hoppy.

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Effect of a Single Oral Dose of 600,000 IU of Cholecalciferol on Serum Calciotropic Hormones in Young Subjects with Vitamin D Deficiency: A Prospective Intervention Study.

J Clin Endocrinol Metab. 2010 Jul 21.
Cipriani C, Romagnoli E, Scillitani A, Chiodini I, Clerico R, Carnevale V, Mascia ML, Battista C, Viti R, Pileri M, Eller-Vainicher C, Minisola S.

Departments of Clinical Sciences (C.C., E.R., M.L.M., S.M.) and Dermatology (R.C.), University of Rome "Sapienza," 00161 Rome, Italy; Units of Endocrinology (A.S., C.B., R.V.), Internal Medicine (V.C.), and Clinical Chemistry (M.P.), Instituto di Ricovero e Cura a Carattere Scientifico (IRCCS) "Casa Sollievo della Sofferenza" Hospital, 71013 San Giovanni Rotondo, Italy; and Department of Medical Sciences (I.C., C.E.-V.), University of Milan, Fondazione Policlinico IRCCS, 20122 Milan, Italy.

Context: Effects of vitamin D repletion in young people with low vitamin D status have not been investigated so far. Objective: We evaluated the effect of a single massive dose of cholecalciferol on calcium metabolism at 3, 15, and 30 d, compared to baseline.

Design and Setting: We conducted a prospective intervention study in an ambulatory care setting.

Participants: Forty-eight young subjects with vitamin D deficiency participated in the study.

Intervention: A single oral dose of 600,000 IU of cholecalciferol was administered to each subject.

Main Outcome Measures: We evaluated serum changes of 25-hydroxyvitamin D [25(OH)D], 1,25-dihydroxyvitamin D, calcium, and PTH induced by a single load of cholecalciferol.

Results: The 25(OH)D level was
15.8 +/- 6.5 ng/ml at baseline and became
77.2 +/- 30.5 ng/ml at 3 d (P < 0.001) and
62.4 +/- 26.1 ng/ml at 30 d (P < 0.001).
PTH levels concomitantly decreased from 53.0 +/- 20.1 to 38.6 +/- 17.2 pg/ml at 3 d and to 43.4 +/- 14.0 pg/ml at 30 d (P < 0.001 for both). The trends were maintained in a subgroup followed up to 90 d (P < 0.001). Mean serum Ca and P significantly increased compared to baseline, whereas serum Mg decreased at 3 d. 1,25-Dihydroxyvitamin D significantly increased from 46.8 +/- 18.9 to 97.8 +/- 38.3 pg/ml at 3 d (P < 0.001) and to 59.5 +/- 27.3 pg/ml at 60 d (P < 0.05).

Conclusions: A single oral dose of 600,000 IU of cholecalciferol rapidly enhances 25(OH)D and reduces PTH in young people with vitamin D deficiency.
PMID: 20660032

The accelerated vitamin D3 dosing schedule of 20,000 IU/day with a 50,000 IU loading dose once a week still works fine.

If you work with a physician and schedule lab tests for 25(OH)D, total calcium and PTC you can increase the vitamin D3 loading dose to 100,000 IU or 150,000 IU once a week.

Take care,

V/R, Batch