Hi there, my name is Lenny and I'm a CH.
My first CH cycle began 7 years ago, I got diagnosed with CH 3 years ago.
I've been through a lot of treatments:Painkillers, O2, Triptans, steroids, Verapamil, Topamax, Deppalept, psychadellic drugs .
Unlucky for me the longest remission I had was for 6 mounths.
The only treatment that I found effective was steroids, wich break the cycle almost immideatly but there are bad sides.
Steroids are really unhealthy, cuasing many different side effecets as gaining weight, bleedings, low sexual function and many more.
Everytime I had too take steroids I had to take more and more.
The highets dosage I took was 80mg a day wich was reduced by 5 mg every 3 days.
I had a remission for a mounth but then it hit once again and i had to take almost the same amount.
After that I had a remission for 6 mounths, now it began once again.
Right now Im in a cycle, wich began 7 weeks ago and it gets worse with every day that comes.
I'm having more and more attacks and right now I have only about 4 pain free hours in total during 24 hours.
You probably know all the things it causes: financial problems, job loss, depression, losing love and friends.
My English is'nt perefect so I'll make it short:
I'm on a breaking point.
I have no clue what to do because if I'll take high dosages of prednisone I might ruin myslef completely.
I'm trying my best to stay sane.
If  any of you has any idea what can I can do, please tell me, I've reached my limit.
Thank you.

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I'd suggest you visit our sister board

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You say you've tried "alternative" treatments, but there are steps you have to go thru, detoxing from all standard meds etc., to make sure you actually bust the cycle. Please give the board a visit, chat with some of the members. It's given a normal life back to many of our members.

Joe

Hey Lenny,

Welcome to CH.com.  You've come to the right place.  We know what you're going through and it doesn't need to be that way. 

There are two very effective methods of controlling your CH it appears you haven't tried...  Oxygen therapy at flow rates that support hyperventilation and vitamin D3 therapy.

Over the last 16 months we've found that when cluster headache sufferers (CH'ers) see their PCP or neurologist for the lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D, the serum level metabolite of vitamin D3...  they have all come back deficient in vitamin D3. 

The normal reference range for 25(OH)D is 30-100 ng/mL, (75-250 nmol/L). However, some CH'ers with active CH have had their 25(OH)D concentration come back as high as 42 ng/mL, (105 nmol/L).

What is even more exciting is 70 out of 100 CH'ers who started the anti-inflammatory regimen with 10,000 IU/day vitamin D3 have had a significant reduction in the frequency and severity of their CH in less than 10 days, some in as little as 12 hours.  Most of them were pain free of their CH before the end of the third week on this regimen.

The anti-inflammatory regimen supplements are shown below.  A 5-month supply costs $35 or 20 cents a day at Costco and you can find similar formulations at supermarkets and drugstores.

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Take two of each...

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That's all it takes...

This regimen has anti-inflammatory properties just like prednisone except it doesn't have all the side effects you've already noted.

I've been on this regimen since October of 2010 when I developed it...  I've been pain free the entire time with the exception of a stress test of my 25(OH)D level I conducted in November...  8 days after I stopped taking this regimen, my CH returned.  I gobbled down the daily dose and they disappeared.  I'm still pain free...

You can find the complete regimen and treatment protocol you can take to your PCP or neurologist at the following link after the survey information:

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If you want to see what other CH'ers are saying about their experience with this regimen, click on the following link:

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Take care and please keep us posted.

V/R, Batch

Guiseppi wrote on Feb 20^th, 2012 at 10:06am:

I'd suggest you visit our sister board START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE You say you've tried "alternative" treatments, but there are steps you have to go thru, detoxing from all standard meds etc., to make sure you actually bust the cycle. Please give the board a visit, chat with some of the members. It's given a normal life back to many of our members. Joe

Hi Lenny,
You may want to try Batch's vitamin D3 regimen, but as Giuseppi says, you say you tried busting with psychedelics, but you may want to keep trying that, doing it the right way (we call it busting). The vitamin D3 will not interfere with any busting, but some other meds you might have been taking, yes. Myself, I needed 3 busts to get to an almost PF state, then the 4th one killed the cycle. So yes, join START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE[/url] and we will be glad to guide you about this alternative cure.
It's a different board, so you'll need to do a separate registration.
See you there?