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John
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To our partners!
« on: Dec 3rd, 2007, 4:41am »
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My last set of cluster headaches was two & a half years ago. I thought that I had out grown them, but little did I know, they have come back with vengeance!!!  
I am now four weeks into this session & not coping very well. Last time they lasted seven weeks & I don't think I have the strength left to get through another couple of weeks.
 
 People just don't seem to understand how impossible the pain can become. My wife is the only one who understands, probably because she has witnessed my episodes for almost twenty years now. It shouldn’t be called a headache at all, rather a "BRAIN ATTACK". The body is clever & stops responding to the same treatment after a while, I keep chopping & changing my treatments & the only one that seems to give me some relief (only about 40% relief) is an intense course of cortisone.
 
A few weeks of living in fear of going to bed at night knowing that the you will awaken with the same intense pain that almost made you take your own life the night before.  The attacks usually last one hour, this one is now almost three hours & now it’s time for my wife to rush me to the emergency room for the third time in two weeks. A cortisone drip will fix the problem for now, but how is a person supposed to function & get to work?
 
After suffering for twenty years, I still can’t understand that modern medicine has not found a cure for this monster syndrome? I drop to the floor & cry like a baby, every night for weeks on end. It is the most mortifying thing to let your wife witness a grown man performing like a helpless child. The only thing that can be worse than suffering from this is that your life partner has to witness their partner going through hell again & again.
 
To all the partners out there, we thank you for the understanding & the support. Without their help, we would not survive!
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Re: To our partners!
« Reply #1 on: Dec 3rd, 2007, 7:20am »
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on Dec 3rd, 2007, 4:41am, John wrote:
The body is clever & stops responding to the same treatment after a while, I keep chopping & changing my treatments & the only one that seems to give me some relief (only about 40% relief) is an intense course of cortisone.

 
It's hard to know what you've been "chopping and changing"  as your treatments, words not often associated with oxygen or even tryptans.
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Guiseppi
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Re: To our partners!
« Reply #2 on: Dec 3rd, 2007, 10:27am »
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When you get a calm moment between hits, run down what you've used and are now using. Have you tried oxygen? And more importantly have you tried it correctly. Many who reported it was worthless as an abortive have discovered it's the miracle fix when used correctly, the MUSTS!
 
1: a Non Re Breather or cluster mask....nasal canulas are worthless, re breathers are almost worthless.
 
2: a high flow regulator, at least 15 LPM.  
 
Started at the first sign of a hit I can abort in less then 10 minutes, usually closer to 6-8. The biggest trick is getting pure 02 into your lungs, no re breathed air and no outside air.
 
Aside from that let us know what you've used that has and hasn't worked. With the combined experience on the board someone might be able to point you in a new direction. Good luck, sorry to hear you're getting slammed.
 
Guiseppi
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Re: To our partners!
« Reply #3 on: Dec 3rd, 2007, 10:37am »
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Hi John,
 
You've survived for 20 years.  You know deep inside that you can do it again.  Don't loose hope.  Keep fighting.  Please tell us what you've been using and maybe we can sharpen your approach and find you some relief.
 
I don't know what keeps our partners with us sometimes.  Watching us writhe and bearing our aggitation and depression is more than I could handle.  We can't say enough about them.
 
Stay tough my brother in pain.
 
-Dennis-
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Re: To our partners!
« Reply #4 on: Dec 3rd, 2007, 11:34am »
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Please print and share with your doctor. These articles represent the latest thinking in treatments.
 
Since you don't mention them, an abortive and a preventive med would be the next step.
---------
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
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:  
http://www.efns.org/files/guideline_49.pdf  
(Thanks to "cluster" for link.)
 
 
« Last Edit: Dec 3rd, 2007, 11:35am by Bob_Johnson » IP Logged

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John
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Re: To our partners!
« Reply #5 on: Dec 5th, 2007, 1:31am »
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Thanks for the advice Guiseppi. Now I know why the O2 didn't work for me! I used it incorrectly. I will try it again and use your advice.
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John
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Re: To our partners!
« Reply #6 on: Dec 5th, 2007, 1:34am »
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Thanks Bob! The two documents are exactly what I need to show my Doc!
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