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meinster
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Just been diagnosed
« on: Sep 16th, 2003, 6:57pm »
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Good to you all
 
My name is Heinz and I live in Vancouver BC, Canada.  I have just been diagnosed with cluster headaches by my doctor.  I have been a long time sufferer of migraine headaches, and at the beginning I tought I was having another period of attacks, but the symptoms were different.  The attacks normally ocurred early morning (sometimes waking me up at 5 am) and late afternoon and this had been going on for 1 week.  I just could not stand the PAIN,  I wanted to rip my head off.  I visited the doctor and he gave me the GOOD Tongue news.  I suffer from Cluster headaches.  Wonderful!!! just what I want.  The only way that I seem to be able to put it under controlis to take about 400 mg of ibuprofen!!! lie down, put a cool towel over the area and just Hum (funny how the vibration of my humming seems to relieve some of it.  My wife is really worried about it, since I am a tough person with respect to pain, she worries how something can take me down so hard. She had been with me when I suffer migraines and we have learned to cope with them, but this pain is different.  Anyways, just wanted to tell my story. (Sorry for cutting, but I feel another one 'I know about the shadow headaches)
 
Sincerely
 
Heinz
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jonny
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Re: Just been diagnosed
« Reply #1 on: Sep 16th, 2003, 7:04pm »
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Wow, ibuprofen would never touch my cluster.....good for you.
 
......................................jonny
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Re: Just been diagnosed
« Reply #2 on: Sep 16th, 2003, 7:07pm »
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Greetings Heinz!
 
I am sorry you had to seek us out but glad you did.  Did your doc order any tests (MRI) prior to diagnosis to rule out tumors or anything like that?  Ibuprofen wouldn't touch my attacks.  Actually, so far nothing has worked except imitrex injections.
 
 
Take the quiz on the left...it wont hurt   ;D  After that, READ READ READ!  I am sure you had more to your story, but when you can, please continue...  What did he prescribe, etc.  Keep us posted!
 
Best wishes!
Chris
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Re: Just been diagnosed
« Reply #3 on: Sep 16th, 2003, 7:11pm »
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I agree with Johnny ... Ibuprofen would never touch the pain of my CH. Maybe we're not taking enough. Maybe we should try about 6,000,000 mg !!
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Re: Just been diagnosed
« Reply #4 on: Sep 16th, 2003, 7:11pm »
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Welcome Heinz! Sorry you had to look us up but glad that you found us! You have come to the right place for information, help, suggestions and talking to others that feel the same pain as you do. There is ALOT of information in the links to the left .. grab a seat, cup of coffee and get comfy while you look around and read what there is out there.
 
As far as your wife is concerned, I would suggest her coming here and reading all she can as well. It will help her in understanding alot more of what you are going through. And there is a section just for supporters of CH suffers if she has any questions or concerns.
 
Wishing you PFDaN's,
~April~
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Re: Just been diagnosed
« Reply #5 on: Sep 16th, 2003, 7:15pm »
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on Sep 16th, 2003, 7:11pm, UnsolvedEquation wrote:
Maybe we're not taking enough. Maybe we should try about 6,000,000 mg !!

 
LOL, that would probably solve something...maybe not CH, but something!   ;D
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Re: Just been diagnosed
« Reply #6 on: Sep 16th, 2003, 9:10pm »
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Welcome Heinz............ hopefully you are going to find the information you need to help you with your pain here.  Be careful with the over the counter drugs. They can cause rebound headache and hurt your liver and kidneys if not monitored closely.  How often are your attacks??? Keep us posted... Good luck  Ree
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Re: Just been diagnosed
« Reply #7 on: Sep 16th, 2003, 10:39pm »
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Welcome Heinz, I know it sux to have CH, buit at least you found the right place for information. OUCH is also a great site.  
I am like the rest with the Ibuprophen thing. I could take 100 and all i would do is OD with a frigging CH to boot. Glad they help you though.
 
Pain Free for 3 weeks now, Patrick
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Re: Just been diagnosed
« Reply #8 on: Sep 16th, 2003, 10:55pm »
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Welcome aboard and sorry you had to look us up.  
 
Painkillers touching CH? Hard to believe. I wonder how long the attacks last? These painkillers take some time to work. Maybe the timing is right. Anyway.....
 
Here are two links: One for a technique I found effective and a second link to a description of this disease which does a wonderful job explaining to employers and others that this has nothing to with what is thought of as a “headache.”
 
http://www.netsync.net/users/charlies/
 
http://www.ouch-uk.org/ch/note_colleagues.cfm
 
Keep in touch and good luck
 
Charlie
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Re: Just been diagnosed
« Reply #9 on: Sep 16th, 2003, 11:41pm »
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WECOME Meinster; i will never 4 get the very first attack of cluster i had 5 year ago thinking it was a very bad headache, in the end i took 9 and i mean 9 extra strength tylenol in 1 hour. OMG i was in so much pain and was gonna do anything to stop it. The purpose of my story is look into getting imitrex and even O2 so that if one day the ibuprofen does not work you dont go through what i did. PF days
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Re: Just been diagnosed
« Reply #10 on: Sep 16th, 2003, 11:49pm »
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Lying down for me during an "attack" is impossible.  I swear, I could walk on the ceiling  !!!     Undecided
Cold ice paks to my eye and temple and neck work great, but I am the one of those with that damn rockin and rollin affliction.
 
I cannot be still.....my poor hubby sits there and replinishes my ice paks.   I am certain I have scared the livin hell outta him.  I hear him...begging to take the pain, so I don't have to suffer.
 
Hope you find what you need here, Heinz.  And April gives very good advice......your wife needs to come here also and read the threads.  It surely would help her to understand and possibly give her some insight to how to help you. Of course, we are all different.  What works for some...doesn't for others.  It is a learning experience.
 
 
Wishes for lotz of pfdan's to you......     Smiley
 
Jean
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Re: Just been diagnosed
« Reply #11 on: Sep 19th, 2003, 1:21pm »
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MUST ADMIT AM SURPRISED ABOUT LYING DOWN!!!
WOT NO DANCIN'? WOT NO SERIOUS DRUGS?
AND IBUFRUFEN , WHAT?
GOOD LUCK ANYWAY IF THIS WORKS FOR YOU...MAN YOU'RE WEIRD!!!
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Re: Just been diagnosed
« Reply #12 on: Sep 19th, 2003, 1:31pm »
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AREN'T WE ALL!!!
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Re: Just been diagnosed
« Reply #13 on: Sep 19th, 2003, 5:47pm »
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welcome to the board heinz!
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