Posted by Margi (207.148.146.142) on July 16, 1999 at 13:12:03:
In Reply to: Re: A bit confused/EXACTLY (w_long response) posted by gary g on July 16, 1999 at 12:41:16:
I completely agree with both of you about CH being an easy answer to mysterious pain and how it is becoming "chic" to emerge from the doc's office waving a written diagnoses of CH. I especially liked your "lumpers and splitters" analogy Gary.
There IS an upside to Clusters becoming a catch-all category for lazy docs though. At least Clusters ARE being recognized as a separate malady now. It wasn't long ago (and it is still happening sadly) that migraine was the omnipotent head pain answer. Look how much research has been done to define and treat migraine as a result. Reams of reports have been written, government grant money has been offered to research cause and cure. Would that have happened if large numbers of patients didn't go to their docs and complain about their pain? Migraine sufferers are being treated and cured. I'm living proof of that.
Who are we to say that 100% of those people treated for migraine presented identical symptoms at the get go? There were probably some sinus infections, vision problems, who knows what else. But the end result was beneficial to those who actually DID suffer from true migraine.
And isn't that the goal here: to find relief, cause and cure for CH? The more attention CH gets, the better. The more people who barrage their docs with CH questions HAVE to have some effect on spawning more research. The by-product HAS to be recognition of CH as it's own entity.
The true CH sufferers know what they suffer from and they know that their attacks are not migraines or sinus or stubbed toes or corkscrewed pinkies.
Look at what's happened with AIDS....it's publicity that has begat (begotten?) the public funding for research. My take on this is that it is good news for CH. So there's going to be some people who are misdiagnosed and will piss off the true CHers. Wouldn't you rather be pissed off and scoffing at the people who pretend to understand your pain yet still standing there with a new treatment in your hand than go back to the days when you mentioned the word "cluster" and got a blank dumbfounded stare from your doc?
Just my opinion.
Water Water Water
Margi