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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> hi long time sufferer finially found a friend
        
(Message started by: ghost62 on Jan 27^th, 2005, 6:02pm)

Title: hi long time sufferer finially found a friend
Post by ghost62 on Jan 27^th, 2005, 6:02pm

hi all been gettin whoopd for to many years by these things... didnt know there was so many people with same problem. docs not much help with finding support but at least they did diagnose correctly. just good to know someone can relate to this. you may see alot of me in the future now i found you all. worst attack was yesterday actually blacked out for the first time from the pain. was awake but lost 30 min or so. some of the people i work with almost freaked out when they saw me doing the human head pretzel around my head. ive avoided telling anyone about it because most people just say "wait till you have a migrane." my response is usually asking if they will trade. ive hade them b4 and not to sell them short but there is really no comparison. but i digress ... just want to say thanks!!!!

Title: Re: hi long time sufferer finially found a friend
Post by Kris_in_SJ on Jan 27^th, 2005, 8:13pm

Welcome to the board, Ghost.

Sorry you have to be here. Somewhere in the archives there's a letter you can share with your boss and co-workers that kind of explains what CH's are like and what it's like to be a sufferer.

I never had to use it, since I'm self-employed, but it's been a Godsend to many others. Perhaps someone will come along with a link to it.

Meantime, read all you can. There are medication combos out there that can help. You just have to find the right one for you.

Sending wishes for PFDAN to you ....

Kris

Title: Re: hi long time sufferer finially found a friend
Post by scott22 on Jan 28^th, 2005, 6:46pm

Yeah this crap really sucks, really no way around that. And as you mention not many people really understand the debilitating nature of a cluster attack. I wish they weren't refered to as headaches, that is to light of a term to describe clusters. Something like "Neurological Attack Syndrome" sounds better to me.

I found this sight during my last cycle 4 years ago. Lots of good info of meds. Trust me the pain killers don't work, as least for me, high flow O2 and Imitrex injections. Haven't found anything to make the cycle break or shorten its duration.

Anyway, Good Luck!!