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   Author  Topic: Hello!  (Read 730 times)
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« on: Dec 7th, 2007, 9:10pm »
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Hey Party people!
I have had clusters since I was 17. I am 35 and  a mother of 2.  I generally have pain everyday for an extended period of time- anywhere between 1- 4 months.   After this extened period, the  CH's will go away and stay away for about 1-2 years and then return.  During my 2 pregnacies and  nursing both children for 1 year each,  I was headache free for 4 years!  Best years of my life!!!  However, when I  weened my daughter she was 1 and I would say about 9 months later the clusters returned.  They were TERRIFYING!  They lasted for 4 months.  Fortunately the meds I take work  so I am able to sleep, play, and enjoy life ( not to full capacity due to the side effects, but it is manageable.)
I have done the following routine;
Prednisone- 60 mg and then taper.  You eat like a horse, gain a lot of weight but it stops the pain.  Bad thing - steroids are terrible for the body. Fortunately I have never taken them for more than 4 months.
Oxygen- I rent a tank for 20 bucks a month. Works pretty good with the "phantom" headaches so you won't suffer so long.
This time, the prednisone is not working very well independently.  I am having breakthroug headaches while taking 60mg.  This is the first after all of these years.  My doc gave me  Imitrex- the nasal spray was a waste of money.  No relief.  The shots are pretty good.  Does not give me full relief but will dull the pain.
The newbie  she gave me is Tolomax. Anyone familiar with this one?  Too early to call it since I only started this week. Claims to help abort the headaches over a short period of time. 4-6 weeks.  I sure hope so as I do not want to go 4 months.
Hope this information can help somebody.
Also, I do the water too.  Does it work for me? Who knows, but you gotta get that water in some kinda of way.

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Posts: 1796
Re: Hello!
« Reply #1 on: Dec 7th, 2007, 9:27pm »
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These two pieces have the most current therapies. Worth printing to share with your doc.
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
Treatment guidelines from Europe
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:  
EFNS guidelines on the treatment of cluster headache and other  
trigeminalautonomic cephalalgias.  
European Journal of Neurology. 2006; 13: 1066–1077.  
Download free full text:  
(Thanks to "cluster" for link.)
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Bob Johnson
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