Posted by gary g (208.133.217.19) on July 14, 1999 at 12:16:34:
In Reply to: Please Tell Me What Kind Of Migraine I Have posted by Jackie on July 14, 1999 at 00:21:38:
feeling "to the point" today, so if you don't like what follows, deal with it -
but I believe it is a contribution to developing an effective means of addressing our mutual problem - CH - so I'd be remiss in not making the point
let's not hurt this lady trying to help her !!!!
she has a genuine problem, but IF it is AS DESCRIBED, it sure as hell isn't cluster headache, which is a very specific malady, which very specific symptoms - she just doesn't have them ACCORDING TO HER POST
there may be many folks lurking about this msg bd with REAL GOOD suggestions on how to get around the financial challenges of getting good care, etc - those problems are NOT CH specific - and if things like that, that can ALSO help CH people are offered GREAT !!!!!!!!!!!!!!!!!!!!
at best, PARTS of her problem resemble PARTS of the diagnostic list for CH;
but PARTS of the symptoms of paralytic shellfish poison resemble PARTS of the symptoms of polio
Dave & Margi are ABSOLUTELY CORRECT-
somehow get to a decent neurologist and at least get the thing clearly diagnosed, if not fixed
we're not going to do anything but HURT this lady if we take it upon ourselves to play DR - there's a hell of a difference between swapping hints on how to get through the 'scrip/MD/insurCo maze, and actually taking it upon ourselves to -prescribe treatments for someone who hasn't even been diagnosed - that CAN be a damn good way to kill someone
now I realize that EVERYBODY means well, and Lord knows we need each other, mutual support and compassionate attitudes to deal with this thing-
BUT:
it WILL be hardheaded science and empirical progression that solves this CH puzzle -
science is nothing more than a disciplined and well-organized system of description, and the MOST important part is getting that description as clear and precise as possible
so far - and with remarkable speed in the last few years - a clear diagnostic picture of a specific ailment known as Cluster Headache HAS been established - and in the process some of the most dangerous myths have been debunked, a HUGE accomplishment -
that's been nearly a century coming - and what the lady is describing (and that's all we can go on)ain't it
ASIDE Comment:
if you're now saying, "oh yeah - MY DOC SAYS CH is a real puzzle - get a new DR !?"
THERE ISN'T ANY MYSTERY ANY MORE folks - at least not in the diagnosis & description of the disease:
start with the "hard" info pages at this site - then get on the web & start doing some searches - don't waste time on any individual's anecdotal material UNTIL you've pulled down the 100s of professional, clinical, research files that are now online & read them - buy a medical dictionary- $2 or $3 used paperback will do -
THEN come back here and you will find these posts to be exponentially more valuable and meaningful
back to our friend-in-need:
the ARE maladies with a lot of overlap that may well be her problem - one I've read of that comes to mind is the chronic trigeminal nerve bundle thing, could also be any number of physiological problems, or some form of migraine (which has NOTHING TO DO with CH whatsoever, for those of you who haven't started your homework yet)-
who knows ?????
to let "close enough" and "it's more important to feel good about the group" sentiments totally displace a fundamental need for solid, hard-edged data and proven linkages is very dangerous,
both to the individual and to the overall progress of seeking relief/cure
be NICE ? yes - hopefully, that's an "OF COURSE"
but more harm has been caused, than aid rendered, by well-meaning people who aren't really equipped to be doing the job
the issue ISN'T "don't help"- of course we want to help the challenge is to be very careful in not confusing INTENTION with CAPABILITY
the last I knew this was a Cluster Headache group
that doesn't "put down" other problems, it just means that in order to be effective we have to define a primary purpose and stay focussed on it
the "founder" (webmaster) has done incredible work for us all in assembling a LOT of real solid resource & info on the other pages of this site
(WHAT ? HAVEN'T READ THEM YET ? what are you wasting your time on the msg bd for - DO THE HOMEWORK FIRST !!!! < grin> - start clicking those buttons in the panel on the left and STUDY that stuff !)
many of us have worked REAL hard, in our own ways, to get the word out where it counts, that this is a real, specific, organic disease - not just a catchall description for repetitive headaches - the old problem, which allows DRs to blow us off as whiners & psychosomatics
(Sheed defines "psychosomatic" as MDspeak for "I don't know what the hell's wrong with you, but won't admit it, so I'll blame it on your imagination" )
let's be as nice & compassionate as possible, but let's NOT give up the ground we've gained in the process