Posted by Roo on March 02, 1999 at 10:57:42:
In Reply to: Re: You think CH is specific? posted by gary g on March 01, 1999 at 17:39:03:
>the trick is to get some sort of an
>understanding of where the diagnostic
>parameters are, and WHY they are so placed;
What are the diagnostic parameters? So far as I can tell, we're all here because we suffer from a common symptom, i.e. very painful recurring headaches that center around the eye area which resemble migraines, last between half an hour and six hours, and attack in groups.
>the danger is to avoid falling into the same
>misunderstanding that so many people have about
>"cancer" ..........there actually is no such
>thing as "cancer", rather there are over 100
>very specific, very different diseases which
>we carelessy toss into the same basket for
>conversational purposes.
This is a perfect example. We all respond to different treatments and different triggers, it seems, and it's possible that our cluster headaches, in turn are actually different ailments.
>a lot of people out there NOW being diagnosed
>w/CH simply because they have recurring acute
>head pain that the doc can't find a cause
>for...that's what I'm worried about....
Actually, that's why I'm here. I have recurring acute head pain for which there is no apparent cause. I have all of the typical symptoms of CH; in fact, I'm a textbook case, except that alcohol is not one of my triggers.
>dig a little deeper in the research mat'l -
>especially last couple years - they ARE finding
>biochemical process commonalities during attacks
>that don't occur in other similar appearing
>syndromes -
Can you give me any pointers to good books and/or sites for this sort of research? I have a friend who is a student of neurology at Harvard Med who has been enormously helpful in explaining things to me, but I'm also trying to gather as much information as I can on my own. Any textbooks, articles, etc. that you might have read would be very helpful.
>the word "specific" just means a category has
>been set up, in which similar individuals can be
>placed - the issue of how narrow or broad that
>category is is EXACTLY what I'm talking about -
>"specific" as in "species", which is what the
>lumper & splitter explanation was about
I'm more worried about the splitting than the lumping, at this early stage of the game. There's too few of us suffering from this malady, I think, to warrant splitting hairs (and research dollars) on the medical definition of CH. At the same time, you have a very valid point; if we do lump instead of split, we end up with the same scientific imprecision that cancer suffers from today.
>it is almost impossible to say anything definite
>unless it has repeated many many times in the
>individual, or is established at a statistically
>significant level among the patient population;
Have you read any statistically significant CH studies? I've just placed a few orders for books on CH, but none of them seem terribly recent.
>I wouldn't go out on a limb about ANY trigger
>except the alcohol one - and THAT does seem to
>carry a statistical significance that is NEAR
>universal
It looks like I'm in the minority. :P
>but if we do that, then we need to invent a term
>for what I'm talking about:
>how about: "nonpathological cyclically episodic
>acute histohypothalamic cephalic paroxysm"
>see what I mean ?
Point taken. :)
-AF