Posted by gary g on March 01, 1999 at 15:28:43:
Finally, in the last couple years, there is a rapidly increasing awareness of CH, and it looks like it's largely because of internet communication. Perhaps a lot of you haven't seen this yet, but it's happening. In just 2 or 3 years, the material available on the internet and in the literature has increased geometrically. This is good. Very good. But nothing comes without problems......the problem with having a lot more info available, is that it can also lead to having an equally large increase in the baloney that's out there.
I'm beginning to think we're gonna see a whole new problem develop regarding cluster headache. Reading lot of the posts, and a few medical research and protocol articles, I'm seeing a trend from not recognizing Cluster Headache exists, all the way to the other end and throwing every oddball, repetitive cephalic pain into the CH basket.
Recently I saw reference to a "proposed" revision of the clinical defintion of CH, by some medical society. I would like to track it down in detail, but no luck so far. If anyone can point me in the right direction, please do so. I'm afraid there's some "lumping" going on. (see below)
My concern is that we will just swap one form of "malpractice" for another. This is why I have added a request to my research question, that only well-established, long-diagnosed cluster headache patients respond. (And if you haven't done so, please do ! - look back thru the msg bd til you see a "research" msg posted by "gary g", and follow instructions there)
EXAMPLE: My wife has pretty nasty headaches, with some degree of repetition, seasonally. It seems to be a combination of a high sensitivity to barometric pressure changes (common in excessive spring & fall weather changes) coupled with some substance allergy (as opposed to response to light, heat, etc). Now, in no way does she have Cluster Headache, as we know it. BUT - from the sound of a lot of the posts she has what a lot of people have, that are now being told they have cluster headaches.
The potential problem is that Cluster Headache (classical diagnosis & pattern) is a VERY specific disease, which requires very specific research and treatment. If we go from the stage where CH is not recognized by most Docs, to another version, where EVERYTHING is being tossed in as CH, we're no better off, because either way, the specificity that is necessary for dealing with this is destroyed.
Sort of like going straight from not existing, to being lost in a mob. Either way, "real" CH is not being addressed.
Now, don't get me wrong - I have sympathy and concern for anyone who has severe recurring pain - but no problem is ever solved without first being carefully defined, and then subject to a carefully focussed effort, which holds its primary purpose very carefully.
It was great the way we were able to help "Flo" and her son a few weeks back, and apparently they found the help they needed. At the same time, it was very clear the poor kid didn't have cluster headaches - so there wasn't much danger of confusion.
What bothers me is the possibility we're gonna get so carried away with making sure no CH patient is EXCLUDED, that we destroy the very focus that will help us. In the field of taxonomy, there are two schools - the "lumpers" and the "splitters". Lumpers group differing species and subspecies of plants and animals together under single common names, while splitters separate them into different species and subspecies. Taking EITHER to the extreme prevents construction of a functionally meaningful body of knowledge. I'm afraid the same thing may be happening with CH.
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