a newbie responds

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Posted by Selene ( on November 08, 1999 at 14:42:11:

In Reply to: WHY do we care if you REALLY have CH ? posted by gary g on November 07, 1999 at 12:35:59:

Sounds like I'm one of the people gary g is complaining about.

Per the very first button on the web site "new visitors" it says:

"Now, about that first post of yours. Please share your experience with us. What are your symptoms? How long have you had clusters? Are you episodic or chronic? What meds have you tried? What works for you? If you have a question, try to be specific, it helps us help you."

That's what I was trying to do in my post, and I suspect most other people do, too. I posted looking for diagnostic info: Is it a tiger or just a stripey cat? I got a lot out of what people responded with, and from reading the attached info on the buttons to the right. I thought it was a stripey cat, but as I learned more, some of it sounded a lot like a tiger.

Been treated for headaches for years, never got a CH diagnosis before...maybe it's trendy or maybe it's finally right. Never occurred to me that you could get a bunch of different kinds together in one person. I always used to think, a HA is a HA is a HA. But you gotta ask the 'dumb' questions to get the smart answers.

Are you advocating a screening criteria for who can post? Only those who were diagnosed more than 3 years ago? Only those who don't have combinations with other HAs? Only those who answer yes to _every_ question in the quiz? Only people who've had a CH attack in the last six months? Doesn't seem to be the point of the site, but perhaps I've misunderstood. Seems like the site is here to determine if people REALLY do have CH, so they can be directed appropriately if not, so the learning can be shared if so, to provide support for suffering and joy with respite. That's what I take from it, but I accept that others need different things. We are each unique individuals. That's WHY...

Verapamil seems to be helping. We'll see what happens long term. Doc said it wasn't something I'd have to take every day for the rest of my life, but also left the door open for future cycles.

NRN, Selene
(I think this is giving me a tension headache. *smile* We need some more Dr. Seuss!)

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