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KHeller CH.com Newbie Offline I Love CH.com! Posts: 11 Denver Metro, Colorado Gender:	Speaking of Vitamin D... May 24^th, 2012 at 1:54pm What type and how much are you taking? I'm in the process of getting a diagnosis. I have a CT scan next week but my doc is 98% sure I'm experiencing Cluster Headaches. Just got my lab results back today and my Vit D is very low at 19!! The nurse said she was going to call in a script for D3. Not sure what the dosage is.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Speaking of Vitamin D... Reply #1 - May 24^th, 2012 at 2:33pm A script for D3? Phooey. You can buy it at CVS or Walgreens, and they usually have buy one get one free sales going on - almost all the time.
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KHeller

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Re: Speaking of Vitamin D...
Reply #2 - May 24^th, 2012 at 2:39pm

I know; I was found to have low VitD a few years ago when I was going through infertility. I took an OTC from the pharmacy.

I'm guessing the doc must be calling in a really high dose or something..? Dunno. At any rate, I"ve already met my deductible for the year (birth of baby), and so it won't cost me anything as a script.

What dosage is everyone taking?

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« Last Edit: May 24^th, 2012 at 2:43pm by KHeller »

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Batch

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Re: Speaking of Vitamin D...
Reply #3 - May 24^th, 2012 at 3:20pm

Hey KHeller,

Good question... and you're clearly vitamin D3 deficient...

The anti-inflammatory regimen kit of supplements shown below calls for 10,000 IU/day vitamin D3 with a minimum of 500 mg/day calcium (calcium citrate preferred as two of these tablets also contain the cofactors magnesium 60 mg/day, zinc 10.mg.day and 1 mg.day boron).

I buy them all at Costco for a total of $35 or 20 cents a day for a 5 month supply,

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Take two of each...

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If you don't have a favorable response by a week to 10 days and you're not having any problems, you can do like many other CH'ers have done on this regimen and up the vitamin D3 dose to 15,000 or 20,000 IU/day with a once a week loading dose of 50,000 IU in place of that day's dose.

This will speed up the process of building the serum concentration of your 25(OH)D reserves towards the target range of 60 to 110 ng/mL where CH'ers on this regimen typically have a significant reduction in the frequency and severity of their CH... Most of them have gone pain free.

Given you're starting at a 25(OH)D serum concentration of 19 ng/mL, it could take you as long as 3 weeks to a month to meet the target range for a favorable reaction using the higher dosing strategy above... At 10,000 IU/day vitamin D3 it could take longer at 5 to 6 weeks.

The only note of caution is you could exceed your annual deduction... fertility tends to go up on this regimen...

Take care and please keep us posted.

V/R, Batch

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Speaking of Vitamin D... Reply #4 - May 24^th, 2012 at 3:29pm The only note of caution is you could exceed your annual deduction... fertility tends to go up on this regimen... Mr Batch Sir, you are a classic!!! Joe
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KHeller CH.com Newbie Offline I Love CH.com! Posts: 11 Denver Metro, Colorado Gender:	Re: Speaking of Vitamin D... Reply #5 - May 24^th, 2012 at 5:09pm The only note of caution is you could exceed your annual deduction... fertility tends to go up on this regimen haha! Not something I'm concerned about LOL Thanks for sharing!
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Speaking of Vitamin D... Reply #6 - May 24^th, 2012 at 5:34pm I was taking 20,000 i.u. per day with a 50,000 i.u. loading dose once a week. Did that for about a month. I'm now back down to 10,000 i.u. per day along with the calcium citrate, magnesium and zinc. All over the counter. And I've been pain free for about a month now.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Speaking of Vitamin D... Reply #7 - May 24^th, 2012 at 5:46pm And I've been pain free for about a month now. Well that's the best damn news I've heard in quite some time! Joe
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Headbanger

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Re: Speaking of Vitamin D...
Reply #8 - Oct 5^th, 2012 at 7:44am

I started the D3 regiment 3 days after my cycle began. I am into week 3 and have been pain free almost since the beginning. I never thought I would find anything that would defeat the beast, but, it seems I have.I didnt do anything different other than the vitamins. I still have my o2 and still take my Verap. Note...I have not used oxygen once this cycle.
A big thank you to Batch for posting the vitamin info and helping me to slay the beast. May it be forever asleep. Kirtis

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Speaking of Vitamin D... Reply #9 - Oct 5^th, 2012 at 9:15am That's great news! Going on about month 30 of my current remission...which corresponds to when I started the original Batch regimen. I aint changing nuthin!!! Joe
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shooky CH.com Veteran Offline 33 years of CH. Posts: 193 TLV Israel Gender:	Re: Speaking of Vitamin D... Reply #10 - Oct 5^th, 2012 at 2:25pm I've started taking a D3 supplement last week in the form of drops (200/400 i.u. a drop, in olive oil / glycerin). That's a very good (and cheap) solution when high dose capsules aren't available. Will post about it's effectiveness in a few weeks.
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japanzaman CH.com Veteran Offline I Love CH.com! Posts: 210 Fukuoka, JAPAN Gender:	Re: Speaking of Vitamin D... Reply #11 - Oct 7^th, 2012 at 8:24am I use Nutrigold D3 5000 IU per day. I picked the brand because it was the cheapest Amazon had and I was ordering from overseas. My last cycle ended abruptly upon starting taking the D3. I don't take any of the other supplements. It may have just been the natural end of the cycle, but that seems very coincidental.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Speaking of Vitamin D... Reply #12 - Oct 7^th, 2012 at 9:28am Quote: I don't take any of the other supplements. You may want to rethink that. Metabolism of vitamin D in the human body requires minerals (calcium, zinc, magnesium, boron). If you don't increase your intake of these, the metabolic process will take them from somewhere - your bones.
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Sara Olson CH.com Newbie Offline I Love CH.com! Posts: 1	Re: Speaking of Vitamin D... Reply #13 - Oct 10^th, 2012 at 1:19am Yes the patient suffering from Cluster headache also has low magnesium and melatonin in there blood level. My physicians has also prescribed me some other supplements like Melatonin and Magnesium.
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Batch

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Re: Speaking of Vitamin D...
Reply #14 - Oct 10^th, 2012 at 7:54am

Hey Sara,

Welcome aboard CH.com and great first post! I like the supplements your physicians prescribed...

Magnesium is one of the more important vitamin D3 cofactors that should be taken along with calcium, zinc, vitamin A, vitamin K2 and boron when supplementing with vitamin D3. These cofactors all play a role in vitamin D3 metabolism and calcium homeostasis.

What was your 25(OH)D serum concentration and how much vitamin D3 did your physicians prescribe?

I'm assuming you were vitamin D3 deficient so it's always interesting to know how physicians treat this deficiency.

Take care and please keep us posted.

V/R, Batch

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nomoreclusters

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Re: Speaking of Vitamin D...
Reply #15 - Oct 11^th, 2012 at 8:31am

My husband is in the midst of the worst cycle he has ever had. The headaches are coming during the day now and lasting for 1.5 to 2hrs in duration. The pain is a 11 on a scale of 1-10. We started the D3 regimen described here yesterday along with a strong dose of prednisone and depakote. Just wondering if anyone has experienced nausea from the heavy dose of vitamins - it is likely the other drugs but I was just curious. He took 20K IU D3, 2400mg fish oil, and the recommended calcium nitrate...all at once. Is this correct?

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Re: Speaking of Vitamin D...
Reply #16 - Oct 11^th, 2012 at 9:26am

I've learned to eat at least a bowl of cereal with my regimen. I'm on a maintenance dosing of 5000 D-3, fish oil, zinc, calcium, magnesium and a daily vitamin. On an empty stomach it's all I can do not to ralph it all back up! If I'm skipping breakfast for whatever reason I'll wait and take them with lunch. Hope it helps him the way it's helped me.

Oxygen? Still the cheapest, most consistently effective abortive for me. I average 6-8 minutes from onset of attack to completely pain free just huffing the 02. Beats the hell outta the old 90 minute rides!

Joe

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-dvb-

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Re: Speaking of Vitamin D...
Reply #17 - Oct 17^th, 2012 at 5:26pm

nomoreclusters wrote on Oct 11^th, 2012 at 8:31am:

Just wondering if anyone has experienced nausea from the heavy dose of vitamins - it is likely the other drugs but I was just curious. He took 20K IU D3, 2400mg fish oil, and the recommended calcium nitrate...all at once. Is this correct?

With regard to nausea, the fish oil seemed to be the culprit for me. I take them all at once, but either close to a meal, or with at least a little something in my stomach.

*edit* - what Joe said....

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« Last Edit: Oct 17^th, 2012 at 5:28pm by -dvb- »

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shooky

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Re: Speaking of Vitamin D...
Reply #18 - Oct 19^th, 2012 at 10:23pm

Bothe Prednisone and depakote can make you nauseous. It's important to take them on a full stomach, and I think it's also best to separate them from the supplements. Using a soft OTC anti-acid med (not with the supplements) might also be a good idea, especially since CH'ers tend to have a lowered blood PH, which contributes to the vasodilation of blood vessels.

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