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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> joplinger
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Message started by jerry oplinger on Mar 24th, 2013 at 4:54pm

Title: joplinger
Post by jerry oplinger on Mar 24th, 2013 at 4:54pm
Have had CH since my 30’s, cycles usually lasted several months, remissions anything from two weeks to a few  years. Nothing ever brought relief but O2.  Inexplicably, the attacks stopped completely about ten years ago. Started again recently at age 85, two to three hits a night and 1 or 2 during the day. I have never heard of such a long remission between cycles and wonder how unusual it is. My GP has declined to prescribe high flow O2 because I have COPD.  I started the fish oil/D3 regimen a week ago, and since the third day on that I have been pain-free.  I am of course thankful but wonder if the D3 could possibly have worked that quickly, or if I should continue to search for a doc who will put me on high flow O2? No luck so far; I live in Fairfax, Virginia.
Jerry

Title: Re: joplinger
Post by Guiseppi on Mar 24th, 2013 at 11:29pm
The D-3 works that fast for many! Doctor Goadsby told one of our members you're never cured of CH, just in long remissions! ;) 3 years pain free and counting on the D-3, I'm NEVER going off of it.

Joe

Title: Re: joplinger
Post by Batch on Mar 24th, 2013 at 11:55pm
Hey Jerry,

Thanks for the post...  85...  Hmmm...  and here I thought I was the old timer around here with CH...

Joe is spot on...  Vitamin D3 and the rest of the anti-inflammatory regimen can and does work that fast to prevent your CH... 

You also need to stay on this regimen...  If you stop, the CH symptoms will likely return as soon as you deplete your 25(OH)D reserves...

As a side note,  I used to live a few miles from you in Lake Ridge, VA before moving back to the family homestead near Tracyton, WA.

Make sure you tell your GP about your cluster headache response to vitamin D3...   It never hurts to do a little continuing medical education (CME) with the physician who treats you...

You might also want to ask for the lab test for 25(OH)D.  That's the serum level metabolite of vitamin D3 that's used to measure it's status.  The normal reference range for this lab test is 30 to 100 ng/mL.  Most CH'ers experience a favorable response at a stable serum concentration of 60 to 110 ng/mL 25(OH)D.

There's also an online survey I'd like you to take after you've been on this regimen at least a month.  You can find this survey at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Take care and please keep us posted... 

V/R, Batch

Title: Re: joplinger
Post by Bob Johnson on Mar 25th, 2013 at 3:56pm
85 puts you 15 to 20 yrs outside the norm for Cluster. What the meaning is ???

But consider printing this file and share with your doc. Very possible that something is hidden beneath the mantle of Cluster.
=======

Link to: cluster-LIKE headache.


Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Title: Re: joplinger
Post by jerry oplinger on Mar 27th, 2013 at 9:28am
BATCH
Lab report on blood test taken 3/16, one day before I started D-3 regimen reads:
Vitamin D, 25-Hydroxy    Result 19.8L  ng/mL
I am continuing basic dosages and still pain free. I have gone from near desperation to high optimism. A thousand thanks.
Jerry

Title: Re: joplinger
Post by Guiseppi on Mar 27th, 2013 at 11:11am
I am facebooking with a lady who went pain free starting the second day of this regimen. It continues to boggle my mind that something that ruled my life for much of 30 years could be vanquished with a freaking vitamin.....just unbelieveable!!!

Joe

Title: Re: joplinger
Post by Batch on Mar 27th, 2013 at 4:51pm
Hey Jerry,

Thanks for the headzup you've started the anti-inflammatory regimen, you're pain free, and you've had your 25(OH)D serum concentration measured... 

Good on you!!!  I wish more CH'ers would take the time to get this lab test.

Folks in our age group need to maintain a 25(OH)D serum concentration ≥60 ng/mL for a number of reasons even if we didn't have CH.

Just talk to your doctor about another 25(OH)D test after 30 days on this regimen and a third lab test at the end of the fourth month on this regimen.  A maintenance dose of 10,000 IU/day vitamin D3 should result in a stable 25(OH)D equilibrium around 80 to 85 ng/mL by the 4th to 5th month on this regimen.

Take care and please keep us posted.

V/R, Batch

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