Posted by T. P. (152.163.195.208) on July 21, 1999 at 01:03:20:
In Reply to: Does this sound familiar to anyone? posted by Trent on July 20, 1999 at 21:30:01:
I don't remember when my CH's started either. I know I've been getting them for many years, though. I had never heard of a cluster until about a week and a half ago. I was going through a bad one, and started getting scared from the pain. I thought I had something dangerous--the pain was so bad it felt like at any moment I could drop dead from a brain hemmorhage. So, anyway, I got on the internet and started searching about headaches/brain tumors, etc. I was relieved when I read somewhere that brain tumors usually don't cause headaches until they have got some size in them, and I figured it was unlikely that I had had a recurrent brain tumor every day at the same time for a couple of months out of every year that I could remember!
Well, anyway, I just wish I had known back in school what a cluster headache was. I spent a lot of time trying to find "my headache" in the books, to no avail. I told friends about it, but they said, "yeah I got this headache the other day boy it was really bad, blah blah blah..." Most people thought I was a hypochondriac, and eventually so did I. A hypochondriac with an extremely LOW pain threshold! I actually thought that people dealt with pain like this all the time!
I honestly think that if I had known of clusters back in school, I would have done a lot better in school, instead of dropping out and going to an alternative school. There are a lot of people out there, I'd guess, who are suffering from this and have no idea that they are actually different (I did for years, anyway). And who knows maybe one of them, if they knew they had CH, would choose to study neurology and someday cure this thing. I know I have gotten very interested in neurology since finding out about CH's, but I'm a 24 year old bum with no job and no college...
If you think about, just one CH special on Oprah or a commercial on MTV, pamphlet in the doctor's office, would really boost awareness of this thing. I know I was looking everywhere for any sign that others had this problem too, just to keep myself from going crazy!
I read an article recently that said that CH was the easiest headache to diagnose, because of the usually "uniform" type of symptoms. It's really sad, then, that it seems to be the most MIS-diagnosed anyway.
I hope that will change, and am ready and willing to be a part of that. So glad you found this message board!