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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Vitamin D3 Therapy
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Message started by Clusterman59 on Oct 18th, 2012 at 12:13am

Title: Vitamin D3 Therapy
Post by Clusterman59 on Oct 18th, 2012 at 12:13am
Hey all!!
I have started the D3 therapy with Pete Batch and am going to try it completely on its own so there is no confusion if it works for me or not and going to give it 4 to 6 weeks, so wish me luck all and I will keep you posted I am so tired of taking meds that knock the crap out of me and have never helped my CH problems so I just pray this is the one for me as it's been 33+ years Chronic and at my wits end. I do have a treatment plan if this does not work so it's not like this its it and nothing else so I just need to know if this works on its own .......Johnny :-?

Title: Re: Vitamin D3 Therapy
Post by ttnolan on Oct 18th, 2012 at 12:40am
Good luck Johnny, it has worked for others!

Title: Re: Vitamin D3 Therapy
Post by Guiseppi on Oct 18th, 2012 at 9:12am
Fingers crossed for you Johnny. Keep the oxygen info we discussed in mind. Still the best abortive I've ever used.

Joe

Title: Re: Vitamin D3 Therapy
Post by Clusterman59 on Oct 18th, 2012 at 4:01pm
Yes Joe, I have my o2 ready at all times and have actually put my old o2 setup back together from when I was a diver. I used this setup for years when I was diving to hang off the boat at the end of a long dive day to help release nitrogen in my body so i didn't get the "Bends". I have a large welders o2 tank with dive regulator and has the ability for extreme high flow o2 and I have used it now for a week and it's made a huge difference in quickly stopping a CH.....Johnny :)

Title: Re: Vitamin D3 Therapy
Post by ttnolan on Oct 18th, 2012 at 4:47pm
Hey, I want one of those O2 set-ups! Diving regulator, I thought about it before... don't know why I didn't pursue it. I guess my question would be if any dive regulator is pure O2 compatible, or is there a specification for mixed (and pure) gas applications? With medical valves going for $200 or more, I am now very interested. And since I won't be diving with it, a crappy used up one would not scare me.

Title: Re: Vitamin D3 Therapy
Post by Brew on Oct 18th, 2012 at 5:05pm
Keep your eyes on ebay:

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Title: Re: Vitamin D3 Therapy
Post by Kevin_M on Oct 18th, 2012 at 7:43pm

Clusterman59 wrote on Oct 18th, 2012 at 4:01pm:
I have a large welders o2 tank with dive regulator and has the ability for extreme high flow o2 and I have used it now for a week and it's made a huge difference in quickly stopping a CH.....Johnny :)


Great going, Johnny.  Good to hear and hoping more upturns to come.     :)

Title: Re: Vitamin D3 Therapy
Post by shooky on Oct 19th, 2012 at 10:24pm
Way to go.

O2 is a blessing.

Title: Re: Vitamin D3 Therapy
Post by Clusterman59 on Nov 2nd, 2012 at 2:06am
I started the D3 16 days ago at an excellerated dosing at 50,000iu daily for 2 weeks and tapered back to 20,00iu daily along with the calcium citrate at 1000mg daily and 2400mg fish oil as recommended by Pete Batch as my CH was totally out of control I have been completely pain free for 13 days and counting!!! Whoooo Hoooooo!!!! This has never happened to me in almost 35 years of Being chronic!!! Thanks Pete your a bloody Genius!!.....Johnny ;)

Title: Re: Vitamin D3 Therapy
Post by Clusterman59 on Nov 6th, 2012 at 11:00am
20 Days PAIN FREE!!! I can't friggin believe it!!! This is AWESOME!!! THANKS PETE BATCH!!! ;)

Title: Re: Vitamin D3 Therapy
Post by PlayDoh on Nov 7th, 2012 at 1:29am
Just thought I'd share the results of the survey question 15 "has the regime helped you"

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yes 77.59% 45
No 22.41% 13
Number of respondents 58
Number of respondents who skipped this question 15 (don't understand how 15 people skipped the most important question  :-?)

Title: Re: Vitamin D3 Therapy
Post by Batch on Nov 7th, 2012 at 5:56am
Thanks PlayDoh,

We need another 50 CH'ers who have been using the anti-inflammatory regimen with vitamin D3 for at least a month to complete this online survey including answering the question on efficacy.

By my estimates there are over 250 CH'ers here at CH.com and even more on Facebook who have started this regimen... If you're one of them and you haven't taken the time to take this survey...  please do so.

Although a survey like this carries little weight with the medical evidence mafia...  the magnitude of the empirical data should be sufficient to shake a few neurologists, who specialize in cluster headache and who are not dependent on big pharma for research funding, into action.

Finally, there are too many CH'ers who have commented that their neurologists appear clueless when it comes to treating patients with our disorder...  Here's your opportunity to do something about it. 

To take this survey, click on the following link.  It will take less than five minutes of your time and it could potentially save countless numbers of people with our disorder from suffering needless agony:

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If you experience problems taking this survey or want to comment about it, respond to the following post: 

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If you want to make a comment about your response to this regimen, please make it to the original "123 Days PF...  " post at the following link:

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Thank You and take care.

V/R, Batch

Title: Re: Vitamin D3 Therapy
Post by shooky on Nov 9th, 2012 at 10:12am
Batch, is the Calcium in the regimen crucial also to people who's Calcium blood level is stable in the middle of normal range? Or is it only for those who has both D3 and Calcium deficiency?

Title: Re: Vitamin D3 Therapy
Post by Batch on Nov 9th, 2012 at 1:43pm
Hey Shooky,

Good question...  Calcium homeostasis and total calcium serum concentration are nearly as tightly controlled as your body temperature of 98.6 F...

Your total calcium serum concentration will remain constant even if you had no dietary calcium intake... 

Calcium homeostasis would pull the needed calcium from your bones.  It would keep the serum calcium concentration constant and in the normal range until your bones turn to jelly... and your teeth fall out...

Soooo....  If you're a cheese head (you eat lots of cheese), drink lots of whole milk, eat bales of green and yellow veggies and bushels of whole grains...  to keep your total dietary intake of calcium at or above the RDA of 1000 mg/day...  there's no need to take any calcium supplements...

Otherwise... the 5 cents a day for the 500 mg of calcium contained in the two calcium citrate tablets (formulated with magnesium, zinc and boron) called for in the anti-inflammatory regimen, is a prudent insurance against bone mineral density loss.

The other vitamin D3 cofactors ARE an important part of this regimen...

Hope this answers your question...

Take care,

V/R, Batch

Title: Re: Vitamin D3 Therapy
Post by shooky on Nov 9th, 2012 at 8:11pm
Yeah, that's a pretty good answer Batch. Thank you.




Title: Re: Vitamin D3 Therapy
Post by Chad on Nov 10th, 2012 at 7:20am
Batch my neuro is in full support of your regimen.  She had my levels tested for D3 and it measured 34 so she had me tone down my dose to 1000 IU/day.  I've been PF since last December, however that is normal.  I usually get hit once every 12 months.  This will be the test as this time approaches.  I'm always stocked on the O2 and that's my abortive weapon of choice.  What was interesting at my last neuro visit was that she encouraged to take vitamin B12 as well.  Has anybody heard anything about B12 being a factor?
I'm lucky to have a neuro who supports my beliefs of anti-pharma.

Title: Re: Vitamin D3 Therapy
Post by Brew on Nov 10th, 2012 at 9:11am
34 - if you're talking ng/mL - is still not to the range that most clusterheads find to be therapeutic (60-110 ng/mL, if I recall). I know for a fact that I did not experience long-term, solid relief until mine went over 70.

Title: Re: Vitamin D3 Therapy
Post by Chad on Nov 10th, 2012 at 10:02am

Brew wrote on Nov 10th, 2012 at 9:11am:
34 - if you're talking ng/mL - is still not to the range that most clusterheads find to be therapeutic (60-110 ng/mL, if I recall). I know for a fact that I did not experience long-term, solid relief until mine went over 70.

I will find out soon enough and lets hope it is enough for me to avoid my next cycle.  I feel spoiled because my cycles in the past 3 years have only been 3 weeks, once a year (12 month remission).  O2 and rc seeds have been my weapons.  Also, i'm a runner and my neuro said too much D3 could be affecting the way my joints feel.  The last year, I have had more pain in my legs than ever.  I don't know what to blame it on, vitamins or just me getting older, lol!
Since I lowered my D3 intake, my joints seem to feel a little better. 

Title: Re: Vitamin D3 Therapy
Post by Batch on Nov 10th, 2012 at 11:00pm
Hey Chad,

Thanks for the posts on this thread...  I've sent you an email with information you need to share with your neurologist.  As it's already been pointed out, a serum concentration of 25(OH)D of 34 ng/mL is insufficient to prevent cluster headaches...  60 to 110 ng/mL is the operable range of effectiveness.

Joint pain while taking vitamin D3 is a remote possibility...  That said, joint pain is more likely an indication of another comorbid condition rather than a direct result of taking vitamin D3.

Edited to add:  How much magnesium are you taking?  From my experience in using this regimen for nearly two years, maintaining the right ratio of calcium and magnesium supplements can make a difference both in cluster headache response and in joint pain.

I started loading up on vitamin K2 which directs more calcium to the bones and I started having joint pain in my wrists...  I cut the vitamin K2 dose in half and added another 400 mg/day magnesium and the pain in my wrists went away within a couple days... No recurrence of the joint pain since and I've been out in the woods around the house with the chainsaw cutting fire wood from wind falls on a regular basis.

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

V/R, Batch

Title: Re: Vitamin D3 Therapy
Post by Clusterman59 on Dec 15th, 2012 at 11:24am
59 days CH free!!! Pain free is AWESOME!!!
After so many years of being chronic (37) this is just incredible! I pray that everyone can achieve this as this regimen saved my life.
Thank You Pete Batch!!.....Johnny :)

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