Posted by Gary Huff (220.127.116.11) on February 05, 2001 at 14:16:46:
I'm still familiarizing myself with the site, but thank God that it's here! There's so much information and stories describing what I've now been going though for nearly 20 years. I'm 41 now, soon to be 42 and started getting cluster headaches when I was 22. My pattern is 1 a day (night), every day for 6 weeks in winter and another 6 weeks in summer.
I took the quiz and only one of the questions indicated that I might not have clusters, but I didn't need the quiz to tell me what I already knew, I know that I do have cluster headaches.
What's the most wonderful thing here, is knowing that I'm not alone. As I've read stories and descriptions, I see myself in one description after another. I've heard so many times over the years, "Oh yes, I get headaches too!", from people who don't have a clue as to just what a cluster is. And it's not only been lay people, but Dr.s that have taken that attitude.
About 7 years ago I read an article in the Seattle Post Intelligencer (newspapaer) about clusters, and it said that some people had some success with oxygen. I took the article to my Dr. and he set up a standing order in the e.r. for oxygen for me. Fortunately I only lived about 6 blocks from the hospital. When a HA would hit, my spouse would drive me to the e.r. and I'd get on the oxygen a.s.a.p.
It only took about 7-10 minutes at 7 liters and PRESTO! RELIEF!!! I now have tanks at home and they're never more than a room away.
Please be patient, I've never been on a b.b. or even a chat room, so it's going to take some time for me to get the swing of things.
I have some real horror stories about neurologists, g.p.s, friends and family. Three weeks ago a HA hit while I was driving and I was pulled over by a cop who ended up calling paramedics to get me some oxygen!
I still don't know all the ins and outs of this site or the difference or connection to OUCH, but I'll try to get with it. I read something about money for the OUCH site, I'm willing to be supportive, but I do need to know what I'm supporting and how best to do it.
I'd appreciate communication, comments, suggestions and/or email.
To all those who made this site and those who keep it up and running, I hope to get to know at least some of you and THANK YOU for this place I don't feel so alone.
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