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Posted by JJS ( on March 08, 2001 at 23:19:15:

In Reply to: New Doc, New Meds, New Hope!!!!! posted by Ike on March 08, 2001 at 20:30:53:

Knowing that you, as a CHer are being treated by some of the best medical professionals is, in my opinion, ONE (of the many) of the more important issues that we need to deal with.
We've all heard from someone here, that is ready to end it all. Some of have even been there ourselves. I think what leads to that is the feeling of helplessness that so many uneducated CHers have. They don't know where to turn. For 8 years, I didn't know where to turn. You begin to feel like there is nobody that understands.
The other thing about our little nightmare is that there sometimes is a feeling of helplessness for not being able to fight back. The beast comes and goes whenever, wherever, he wishes, and stays for as long as he likes. Sometimes he's in a worse mood than others. And all we can do is dance around like his puppets till he's bored and moves on. You feel like you can't fight back. Awhile back I put a post on the board begging the beast to show his face and give me one chance to fight back. He never showed.
These feelings of helplessness can do wierd things to your mind.
My point is, that getting specialized medical attention is truly the ONLY way to go.

Ever said to your doctor "This pain is so intense that I just can't function at all" or "Sometimes I bang my head on a wall to relieve the pain" and in return you get that blank stare, almost as if he's thinking "Okaaaaaay, banging head on wall, what an idiot"

I went through this with ten different Dr's over the course of eight years, before I even knew what a Cluster Headache was. And now I see Headache specialists that operate about 45 minutes from my home. I don't care if they were in Zimbabwe (not you Anthony, hehe) I would go there before ever seeing a family Dr again. Don't get me wrong, there are some really well educated Dr's out there who aren't specialists, but our disease calls for the best treatment there is.

To anyone not seeing a specialist: I beg you, get the help that is available, you need it. It is a whole world of difference.

And if I can help anyone having trouble finding a specialist, just e-mail me, and I will help.

Thanks for reading this manuscript, sorry I went on so long, I should have broken it up into Chapters, huh?


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