Can anyone help me??????

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Posted by Tracy - England ( on March 29, 2000 at 10:32:33:

I have been told by a specialist that is likely I suffer with Chronic Paroxysmal Hemacrania (Lordy that *is* a mouthful!!).

He said the pain is worse than CH, but very like it symptomwise. Although the attacks happen more frequently and are longer. Apparently it's very rare (mostly women over 30+, and even then only 1 in 100,000), trust me to get it!! There are no studies in the UK and so I have absolutely no information on it. He says I should be referred to a Neurologist, however my GP wouldn't treat me when it was thought I had CH, so I can't honestly see him dealing with this.

Anyway, to the point of my post. Can anyone help? Has anyone who lives outside the UK (probably the US, as you guys *do* actually seem to have health professionals who care) who have had some knowledge of this?

I getting desperate, I can't begin to describe the pain I'm in these days. No painkillers seem to work anymore. Sometimes suicide seems the best way out. I can't stand how miserable and aggressive it's making me. I just want to crawl away and die.

The specialist said my GP was rediculous, but that's not a great deal of help. He's willing to assist me as much as he can, but he doesn't appear to know what he's dealing with beyond diagnosing it and even then he's hands are tied without my GP's cooperation. I can tell you now, he won't get it.


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