Posted by gary g (208.133.217.52) on July 16, 1999 at 12:41:16:
In Reply to: A bit confused. posted by drummer on July 16, 1999 at 07:39:10:
way to go drummer !
glad somebody besides me said it
I've brought this up a couple times in the last year and been pooh-poohed by the shovelful
MY OPINION:
there are MANY MANY people around who have painful conditions,
AND are of a very impressionable nature PLUS they may be one of the HUGE numbers of people who use their afflictions to constantly garner sympathy & attention
PLUS - some poor souls are so lost in the busy old world that the only way they can feel a "part" of something is to "patient up" with the latest publicized malady -
I have a close relative like this - every six months it's a new disease, and she has NO PROBLEM finding plenty of quacks, clinics and pharmacists who will indulge her with a great show of professional compassion, as long as the dinero keeps rolling in
SO - it is NOT surprising that "all of a sudden everybody's got cluster headaches" or at least say they do
and to that alone: so what - who cares ??
the REAL PROBLEM HERE:
there is no such thing as an absolute scientific description of any disease that is icecold accurate and carved in stone for the ages...
a disease, legally/ethically, is what a committee of DRs in the AMA says it is (for USA)
really - check it out - and that does change over time
now-
it is also unfortunate that many many DRs will "expand" the symptoms of a described syndrome to include other conditions that they can't get a handle on
"shit, I haven't got a clue what this guy's problem is, but if I call it some sort of allergy and send him off to the allergist, I can close my file with a diagnosis of SOME sort"
example:
Joe has headaches, they're real nasty SOBs, and they keep repeating
Joe's DR can't figure out the headaches, but they SHARE some symptoms with the description of Cluster Headache in the currently approved literature...
Joe's DR can't stand saying "I haven't a clue" - so he tells Joe he has a variant form of CH - and starts trying him on the long list of remedies attempted for CH
so what ? here's what:
imagine this happening thousands of times all over the place - before you know it, somebody does a literature search and VOILA - finds that many DRs are reporting CH patients who develop strange thicknesses in the mastoid process (or corkscrewed pinkie fingers - whatever) - so, all of a sudden that becomes a listed symptom of CH - (remember - it was NEVER established that these Joe's had the "required" symptoms of CH to begin with)- "many CH patients have twisted fingers" -
next thing you know, anybody with a chronic hangovers and an arthritic nosepicker thinks he has CH
(and THAT'S how we got the square-jawed male stereotype to begin with)
what just happened ?
simple: the description of CH became LESS precise, and the focus for research and serious study became LESS clear, and people who HAVE CH lose - and ultimately so do the others, because diagnosing them with "variant CH" gives the DR an excuse to blow 'em off and excuse his failure to diagnose with the explanation: "we don't know what to do about it yet"
so, the Joes march back out with the idea "they have a specific ailment that can't be helped, poor them, and wasn't that DR wonderful to try so hard inspite of the odds against him"
COME ON PEOPLE WAKE UP !!!!!!!!!!!!!!!!!
Were drummer & I they only ones awake in Logic 101, when they dealt with the differences between necessary, sufficient and exclusive ????
it's like cancer -
there is NO SUCH THING AS A DISEASE CALLED CANCER
that is a loose term which describes a huge class of different maladies, all of which involve some sort of abnormal behavior/replication of cells in the absence of traditionally described infectious agents
looking at the patient's emotional side of things:
having a dramatic problem that is not described, diagnosed or understood can be a terrifying thing for anybody
SOME people tend to feel "I need an answer, even if it's wrong !!!!!!"
I don't understand or identify with that, but I do realize there are millions out there who feel that way
the uncertainty is as horrible for them as the affliction itself
SO - they are VERY prone to grasp at the latest disease that comes down the media road (and remember, even the med journals are "media") to relieve the uncertainty distress
many psych/soc writers are now suggesting that "being paid attention to" (recognition) is an even stronger driving need than power or sex, and what BETTER way in our culture to gain recognition than to be a proud/suffering patient of the latest publicized disease ?
~~~~~
this question/controversy of defintion is not by any means a CH problem -
it happens on every lab table in science
here is a good example which is a PERFECT analogy for CH:
in the natural history professions (one branch of which is our household's family profession) the field of taxonomy involves the classification and description of different species of plants & animals "lumpers" tend to allow quite a bit of individual variation within a species does it matter to the creatures involved, or from a perspective of pure knowledge ? the laws, management money, bird book publishers, game wardens, etc ALL take differing actions based on what we CALL the birds, even though the individual animals are exactly what they are, no matter what we call them a glaring example in the health field is found in substance abuse treatment, particulary in the field of alcoholism there are "lumpers" who say that if you are an alcoholic, then ALL your problems are related to alcoholism, and if you focus entire on that you will sooner or later get around to all your other problems OK - either you see the point of this "essay" by now or you never will- MY OPINION: 2..it has a list of VERY specific symptoms that occur in like form in an overwhelming percentage of the cases - at this point there should be VERY little confusion about what CH is - if you have all or most of those absolutely standard symptoms then most likely you have CH - you may have other symptoms as well, but that doesn't make them CH --- just because the cat had kittens in the oven, doesn't make 'em muffins too 3..it is those symptoms that MAKE it CH, from a descriptive/diagnostic perspective 4..any accurate scientific investigation HAS to focus down to a level where the specimens being examined have an overwhelming commonality of like characteristics before you can start reasonably dealing with them as a class (remember - like "all politics is local") 5..I am SUPREMELY interested in my personal case of CH, I am EXTREMELY interested in the cases of others with the SAME syndrome, I am SOMEWHAT interested in a general way, in the array of maladies which might share some symptoms of CH but alas - I am quite human, very flawed, and get EXTREMELY impatient with folks who have done NO research, have NO diagnosis, and pound on every door they come to that even vaguely suggests a "group" they can join THERE ARE MANY GROUPS, BULLETIN BOARDS, ORGANIZATIONS, ETC FOR THE WIDER FIELD OF CHRONIC HEADACHES - AND THAT'S GREAT - just remember - when you want your car all pretty & shiny, and a boost to your ego along with it, you take it to the free coffee, all-girl, carwash - BUT I WAS UNDER THE IMPRESSION THIS IS A FORUM FOR EXCHANGE ABOUT CLUSTER HEADACHE, AND GROUP EFFORT TO MOVE THE RESEARCH & COPING WITH CH FORWARD " Y'ALL COME IN AND FEEL BETTER 'BOUT YOURSELF" APPROACHES ARE A DIME A DOZEN - HELL THEY'RE A PENNY A HUNDRED - WE DON'T NEED ANOTHER ONE WE DO NEED SOME HARDHEADED FOCUS ON DOING SOMETHING ABOUT THIS !@#$%^*&(*()) DISEASE So, let's be nice in our discussions & exchanges, but let's keep 'em focussed on the problem and solutions of CH, so we can actually accomplish something (and yes - to the sociologists and poli-sci types out there - I KNOW that generality and dissolution of focus is an inevitable product of the growth of any group - just like legally enforced mediocrity is the true ultimate product of pure democracy - but that doesn't mean to not keep trying to stay on track, eh ?) an aside to those of you who email others directly for help & information, and then can't even take 15 seconds to dash off a "thanks - I got the info" enote, after somebody took a LONG time trying to help you specifically - 'tanks, I feel better now and remember,
in the taxonomy discipline there are 2 camps -
the "lumpers" and the "splitters"-
this is the whole
"splitters" tend to insist that any variation which shows up in more than one individual suggests a separate species
not a bit - those orange and white birds don't give a damn whether WE say they're cousins (Baltimore & Bullock's orioles)
or all the same thing (northern orioles)
does it matter FUNCTIONALLY??
damn straight it does !!!!!
the crux of the problem is to sort them into groups such that actions subsequently taken, relative to the individuals as members of the named groups, will actually be appropriate and effective for both the individual members and the group as a whole
(side note: lumpers tend to be Republicans, splitters tend to be Democrats - your Analysis 101 assignment for the week is to figure out why)
there are "splitters" who look at the alcoholism with a finer focus and say "OK - once you get your alcoholism under control, you will be capable of ALSO dealing with your OTHER problems, which may overlap your problems from alcoholism, but which need their own remedies to be resolved"
(I happen to be a solid & experienced splitter in that debate - God Save Me from parrots wearing owl masks)
1..there is a very specific ailment which we have come to call cluster headache
THAT HELPS NOBODY
when it has a serious functional problem, you take it to the best mechanic you can find who knows what the hell he's talking about and how to fix it, no matter what tone of voice he uses
IT IS THAT SPECIFICITY THAT I VALUE IN IT, AND WHICH I BELIEVE GIVES IT REAL RESULTS
what the hell's the matter with you, were you raised by pigeons or something ?
have a tolerable weekend
CH is a powerful enemy
it has even created a whole new 'rithmetic:
in which a hundred 3s, twenty 5s and a handful of 7s STILL don't add up to anywhere near one 10