Posted by gary g (208.133.221.181) on November 13, 1999 at 12:30:21:
In Reply to: just a old name for the same old headache. CLUSTER HEADACHES! posted by doug l on November 13, 1999 at 00:43:09:
For ANYBODY confused about their diagnosis-
(Peggy, see specific suggestions in my email)
I DON'T believe it matters what name we call something AS LONG as everybody involved clearly understands what that name refers to;
(as Twain said: consider the difference between lightning and the lightning bug)
there ARE some terms whose usage SUGGESTS strongly, that the person using them MAY be very confused about the topic - this is true in ANY subject area
cluster migraine is one of those terms
doug is right for SOME of the times the term "cluster migraines" is CURRENTLY used,
it WAS used as a synonym for CH back when it hadn't been determined how very different CH & migraines are,
but NOW it seems it's more apt to be used by:
1. somebody using obsloete medical books for info
2. someone who has heard the term and is making assumptions about what it means, but doesn't understand cluster headache (this seems to be the case with a lot of docs who aren't up-to-date neurologists)
3. somebody who realizes they don't know what's going on, and fudges it by figuring that term could cover anything
for the PATIENT (who else matters, ultimately ?)-
it is VERY VERY important to study up on the latest info re: CH, which is available thru the links to left of this BB, and on many other clinical & research web sites;
suggestion: if you read the term migraine as though it were related to CH, move on to the next site
you MAY see the term migraine, but check to see if the usage is to CONTRAST it to CH, which IS a definite part of CH diagnosis
interestingly - a big part of CH taxonomy is how DIFFERENT it is from the various forms of migraine, NOT how similar
WHY should you care -
1. the therapies for CH and other types of head pain are mostly VERY different - if not in substance then in dosage and method of use
if you've got CH and are trying to deal with it by migraine methodology, you won't get much relief - a HUGE # of the meds & therapies mentioned in migraine references are just plain irrelevant to CH
2. you will have difficulty dealing with docs, employers, insurance co's, etc UNTIL you get a clear handle on what YOUR problem is -
take it from our collective experience - if you have CH, and describe it to people as cluster migraine, you're in for a world of aggravation
3. understand that a lot of docs (especially w/HMOs & the like) immediately blow off any malady that they perceive as a "headache",
that is a BIG problem for CH patients, UNTIL they get their "network" set up;
TAKE HOME MESSAGE:
before you feel confident in a diagnosis, do your OWN research using CURRENT sources that are not 4rd or 5th hand - there's lots of this "purer" on the 'net, as well in clinical handbooks available at university or larger town libraries -
(4th hand info means you read it on an internet posting, posted by someone who got their info from a magazine article, that was written by a general assignment writer, who got their info from talking to their brother-in-law and looking up the topic in a mass-market home medical encyclopedia, which was written by an ancyclopedia production writer, who got his info from speedreading a chapter in a medial book - I think you get the idea of what happens...)
it won't help you with ANYTHING to try to treat the wrong disease, OR to decide to twist the clinical definitions so much that you "squeeze" yourself into something that isn't correct, to try to escape uncertainty
if you DO have a bona fide case of cluster headache:
1. good luck, but remember - the good side of cluster headache is that it is the only thing that hurts this bad that doesn't kill or cripple you, small consolstion but you gotta take what you can get
2. start reading ALL the links found in the directory of this site, and start wading through the archived posts to this BB - between that and finding a good neurologist who is current on CH, you'll just about have it covered