D3 Survey

[Psiloscribe]

We are very interested in your experience with the vitamin D3 regimen. If you would take a couple of minutes to answer the questions here, it would be much appreciated, and helpful to others with CH. You can post your answers here (cut and paste questions) or PM them to me or to CHFather.  Thank you!

To make this survey reliable, we would like to hear from you only if you tested the whole basic D3 regimen: something each day in the ranges of 10,000 International Units of vitamin D3; several calcium citrate tablets; and 3-5 mg. of Omega-3 fish oil. (WeÂ’re considering the lemonade/limeade to be optional.)

We are just as interested in hearing from you if the D3 didn’t work as we are if it did. 

1. Are you:

A. Chronic

B. Episodic

2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen:

A. Did nothing or nearly nothing for you.

B. Eliminated your headaches.

C. Helped with the severity of your headaches but didnÂ’t eliminate them.

D. Helped with the frequency of your headaches but didnÂ’t eliminate them.

E. Seemed to help for a while but then stopped showing anything positive. If this is true for you, how long did this improvement last before stopping?

3. If you experienced positive results, how long were you on the D3 regimen before you experienced them?

Thank you very much

Bob

[alleyoop]

1. Are you:

[highlight]A. Chronic[/highlight]

B. Episodic

2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen:

[highlight]A. Did nothing or nearly nothing for you.[/highlight]

B. Eliminated your headaches.

C. Helped with the severity of your headaches but didnÂ’t eliminate them.

D. Helped with the frequency of your headaches but didnÂ’t eliminate them.

E. Seemed to help for a while but then stopped showing anything positive. If this is true for you, how long did this improvement last before stopping?

3. If you experienced positive results, how long were you on the D3 regimen before you experienced them?

Although I did not experience positive results, I only took the regimen (including lemonade) for about a week.  The reason I quit after such a short time, is because I was actually getting hit harder and more often while on the D3. (of course this could have been nothing more than my cycle peaking)

Bobb

[razorPP]

1. Are you:

A. Chronic

2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen:

C. Helped with the severity of your headaches but didnÂ’t eliminate them.

D. Helped with the frequency of your headaches but didnÂ’t eliminate them.

3. If you experienced positive results, how long were you on the D3 regimen before you experienced them?

I have been chronic for 3 years, I tried in Oct / 2010 with d3 fish oil, and calcium, but it had no effect. This time with d3, fish oil, calcium citrate with magnesium and zinc and lemonade it worked. It took a month before I saw any results. I am going on four weeks mostly pf, I still get one weekly hit (1-2  kp) in the evening, but it's dull and a short lived ch, not the ice pick in the eye, and no ch the next day. I know I still have ch and it can hit me any time, I have and will use the knowledge here at CB to help fight it. holding on for change , peace

[kaboom]

1. Are you:

[highlight]A. Chronic[/highlight]B. Episodic

2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen:

[highlight]A. Did nothing or nearly nothing for you.[/highlight]

B. Eliminated your headaches.

[highlight]C. Helped with the severity of your headaches but didnÂ’t eliminate them.[/highlight]

D. Helped with the frequency of your headaches but didnÂ’t eliminate them.

[highlight]E. Seemed to help for a while but then stopped showing anything positive.[/highlight] If this is true for you, how long did this improvement last before stopping?

3. If you experienced positive results, how long were you on the D3 regimen before you experienced them?

Umm...am I allowed to choose more than one answer to a question??? I'm really not a rebel, it's just that my head enjoys confusing me. 

Like so many other things I've tried for CH, it's difficult to tell if this has had a positive affect on my CH or if its a coincidence.  When I first started the regimen, within 3 days it seemed that my pain levels dropped some. Right now I'm back in a high cycle but I've continued to stay on the vitamins just in case they may be helping with the pain levels.   

[Pixie-elf]

I'm chronic.

It made my hits worse. 

[1961mom]

1. Are you:

[highlight]A. Chronic[/highlight]

B. Episodic

2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen:

A. Did nothing or nearly nothing for you.

B. Eliminated your headaches.

[highlight]C. Helped with the severity of your headaches but didnÂ’t eliminate them.[/highlight]

[highlight]D. Helped with the frequency of your headaches but didnÂ’t eliminate them.[/highlight]

E. Seemed to help for a while but then stopped showing anything positive. If this is true for you, how long did this improvement last before stopping?

3. If you experienced positive results, how long were you on the D3 regimen before you experienced them?

[highlight]I began the D2 (prescription is D2 & converts to D3) of 50,000 iu per week for 12 weeks August of 2010, then continued with OTC D3 and am still taking about 8,000 iu per day.  I've had no nausea and feel it's helped longterm, reduce severity for sure![/highlight]

[FRUSTRATED123]

1. Are you:

A. Chronic

2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen:

C. Helped with the severity of your headaches but didnÂ’t eliminate them.

D. Helped with the frequency of your headaches but didnÂ’t eliminate them.

3. If you experienced positive results, how long were you on the D3 regimen before you experienced them?

I would slay within a week i noticed a slight difference.

I cheated and went on prednisone for a while cause i NEEDED relief BAD!!  i am fortunate in that i have a high tolerance for steroids and not many side effects.

Unfortunately, the devil is back (3 days after i stopped the steroids)  but the intensity isn't as bad (knock on wood) and i think due to the supplements.

I also have had alot of relief using magnesium oil.  I rub it on my face head and neck when i feel an attack coming on and it really does help.

the best place to purchase this is puremagoil.com

My best wishes to all for PF days ahead.

GOD knows they have only been back since Oct 13th, but are dragging me to the ground as usual.

Thanks to everyone for their postings.. It helps a lot to know they are others that understand what i am going through.

[Ken]

1. Are you:

[highlight]A. Chronic[/highlight]

B. Episodic

2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen:

A. Did nothing or nearly nothing for you.

B. Eliminated your headaches.

[highlight]C. Helped with the severity of your headaches but didnÂ’t eliminate them.[/highlight]

D. Helped with the frequency of your headaches but didnÂ’t eliminate them.

E. Seemed to help for a while but then stopped showing anything positive. If this is true for you, how long did this improvement last before stopping?

3. If you experienced positive results, how long were you on the D3 regimen before you experienced them?

It took only 2 days.  Likewise it takes only ~2 days of not taking D3 to experience serious attacks again. 

I've been taking 10,000 IU D3 for almost 7 months now.  It thankfully hasn't decreased in its effectiveness yet.  Every now and then I stop taking it for a few days to make sure that I'm still having clusters.  So far, I would still be miserable if it weren't for the D3.

[CHfather]

Thanks, Ken!  So glad to hear you're getting some relief from this.  From your post, I'm wondering whether you're doing the whole regimen as it is now recommended:

Precise specifics are a bit of a moving target, as experimentation teaches more about what works and what doesnÂ’t, but here are the elements of what is currently recommended for people who are in cycle.

     1.  About 10,000 international units per day of vitamin

          D3, taken with food.

     2.  2 or 3 calcium citrate tablets per day (at least 500

          mg. of calcium), with or without food. These tablets

          should also contain magnesium and zinc, and they

          often also contain a small amount of vitamin D3.

     3.  2,000-3,000 mg per day of Omega-3 fish oil, with

         food.

     4. Two glasses of lemonade or limeade per day, taken

         with meals. (Other high-citrus juices are also

         acceptable, but lemon and lime are said to be higher

         in citric acid content. Batch has said that he also

         favors margarita mix.)

[red]

i've had ch's for about 15 years now.

cycles always lasted approx 6 weeks every 18 months or so.

this time it's hung around for over 4 months, which led me to join the forum.

bejeeber advised me to take up the D3 regime.

within a few days of taking D3 with calcium/zinc/magnesium supplements the main symptoms have disappeared. thanks bejeeber, excellent advice which i'm very grateful for.

still in the cycle i think because of shadows about twice a day/night.

i've found that a heaped teaspoonful of powdered ginger mixed with a little water and downed as a shot will clear a shadow within a few minutes. i'm amazed something so simple can be so effective.

at 4 months i'm in uncharted territory so have no idea if, when or how ch's will appear in the future.

whether D3 would be helpful when the cycle is at its peak i really don't know but for now it seems to be working.

i'll update with any further observations as things develop.

good luck to all on the forum and thanks to chorlton steve for the ginger tip.

[raquelinkansas]

B. Episodic

C. Helped with the severity of your headaches but didnÂ’t eliminate them.

D. Helped with the frequency of your headaches but didnÂ’t eliminate them.

Actually stopped a cycle that was starting up within a couple of weeks BUT when I quit taking the regimen it came back in about 3 weeks. I got right back on it. IT IS MOST DEFINATELY HELPING!  NOTHING OVER A LEVEL 5 AND NO MORE THAN TWO A NIGHT! 

My Regimen:  D3, Calcium, Fish Oil, Magnesium.

[davidj]

1) Episodic

2) reduced both duration and frequency as well as intensity also made O2 more effective.

3) within a few days, however added 1200mg of kudzu 3 times daily to the regiment.

4) I feel it also really helped with my post dose hits.

I chronicled my experiment with D3, kudzu and busting in the theory and implementation section.

David

[clusterdad]

Please advise...I see on here 2 different mg for the fish oil. The main post says 2-3 mg....but later on in these posts it states 2000-3000mg.

Just now starting this.

Thank you

[PlayDoh]

1. Are you:

A. Chronic

B. [highlight]Episodic[/highlight]

2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen:

A. Did nothing or nearly nothing for you.

B. [highlight]Eliminated your headaches[/highlight].

C. Helped with the severity of your headaches but didnÂ’t eliminate them.

D. Helped with the frequency of your headaches but didnÂ’t eliminate them.

E. Seemed to help for a while but then stopped showing anything positive. If this is true for you, how long did this improvement last before stopping?

3. If you experienced positive results, how long were you on the D3 regimen before you experienced them?

[highlight]2 days[/highlight]

[PlayDoh]

Please advise...I see on here 2 different mg for the fish oil. The main post says 2-3 mg....but later on in these posts it states 2000-3000mg.

Just now starting this.

Thank you

its 2000 to 3000 mg, which is usually 2 to 3 pills

[Jeno Peterson]

1. Are you:

A. Chronic

2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen:

A. Did nothing or nearly nothing for you.

3. If you experienced positive results, how long were you on the D3 regimen before you experienced them?

I have suffered clusters for 18 yeas now. (Twice a year, 2-8 weeks, at least one headache per day, 4am, almost like clockwork.)

I was not really aware that there was a "regimen" but I have been taking 10,000 iu D-3, 3-4 mg Omega-3, a Super B-Complex, and 20-30 mg of Melatonin for years. My Doctor got me started, the D-3 is a no brainer if you avoid sunlight (I do). The fish oil and Super B help with my digestion. The muscle spasms I get in my face make it very difficult to eat. I drink most my meals, and I am NOT talking Budwiser.

Bottom line for me, nothing stops them. I have taken just about every drug on the list. Some, in super high doses under the supervision of my neurologist. The side effects scare me, but not as much as the pain does (I wake up, waiting for the CH's once they start.). And, there seems to be no way to avoid the triggers. Light, sound, smells, stress, basically anything in normal day to day life can trigger a headache. In the last 4 years, I have been getting more migraines in between clusters.

Botox is the next thing they want to try, but I just don't see many positive results in the trials I have read.

I hope you all have better results than I have.

Jeno

[MJ]

I am a chronic episodic.

I decided to try the D3 regimen as a preventive out of cycle.

after just 3 days i started having ice pick type hits and regular headaches. at 5 days I experienced a single short cluster and promptly gave up that idea. no headaches after stopping.

Never tested for Vita D deficiencies but suspect I get adequate D through sun and sustenance.

[mikesal]

1. Are you:

A. [highlight]Chronic[/highlight]

B. Episodic

2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen:

A. Did nothing or nearly nothing for you.

B. Eliminated your headaches.

C. [highlight]Helped with the severity of your headaches but didnÂ’t eliminate them[/highlight].

D. [highlight]Helped with the frequency of your headaches but didnÂ’t eliminate them[/highlight].

E. Seemed to help for a while but then stopped showing anything positive. If this is true for you, how long did this improvement last before stopping?

3. If you experienced positive results, how long were you on the D3 regimen before you experienced them?

It was several months before I noticed solid results.  The key is to stay the course since it will take time for the process to ramp up and make a difference.

MikeSal

[Brad]

1. Are you:

A. Chronic

[highlight]B. Episodic[/highlight]

2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen:

A. Did nothing or nearly nothing for you.

[highlight]B. Eliminated your headaches.[/highlight]

C. Helped with the severity of your headaches but didnÂ’t eliminate them.

D. Helped with the frequency of your headaches but didnÂ’t eliminate them.

E. Seemed to help for a while but then stopped showing anything positive. If this is true for you, how long did this improvement last before stopping?

3. If you experienced positive results, how long were you on the D3 regimen before you experienced them?

[highlight]It took about a week the first time.  On the second time less than a year later it was almost overnight minus a mild hit and some morning shadows.[/highlight]