Women with CH

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Posted by Terri ( on January 10, 2002 at 13:35:16:

In Reply to: Any women with cluster headaches? posted by Linda on January 09, 2002 at 15:52:06:

Hello there (jumping up and down waving) I'm a 32 year old female CH'er in remission (3 years, 4 days). I went through *5* doctors before one finally said "yup, it's CH" (before that it was "oh honey, it's just PMS" - yea, bite me). He also told me I should run out and buy a lottery ticket since 1/2 of 1% of the people who suffer from CH are women. What odds huh?

My last attack was in December '99, lasting almost 4 weeks to the day. At the height of the attacks I was having 3-5 episodes a day lasting from 20 minutes to 2 hours and I started to understand why terminally ill people see suicide as an answer - it was awful. I also ended up getting caught up in rebound CH from using Imitrex (bad, bad thing!). Oxygen and morphine did nothing (well, morphine almost killed me, turns out I'm allergic). I also had "shadows" for about 3 months after - bad enough to be painful, but it's *nothing* like a "real" CH - more like a promise of what it *could* feel like. Ug.

My CH were not hormonally induced. I've been on depo since '94 and it *did* get rid of pre-menstral migraines, but that's all. The ER doc & a neurologist said my episode could've been brought on by extreme stress. I've been told that remissions can last from 1 month to up to 6 years. Thankfully it looks like I'm going to be ok for awhile... but then it could hit me again tonight. Damned little monster sneaks up when you least expect it.

This is a great place to be. These people were here for me when I was driveling on and on at 1am, in pain so bad I sat and typed hysterical letters with my eyes shut and rocking in my chair. And yes, to find that another woman is experiencing what we're told we "can't have because we're female" is quite reassuring. I hope you find relief soon. I was treated with Propranolol for a preventative, but honestly, it never did much. Good luck to you.


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