Posted by gary g on March 01, 1999 at 17:39:03:
In Reply to: You think CH is specific? posted by Roo on March 01, 1999 at 15:55:07:
some real good points, roo
and some examples of what I'm trying to say-
re: specificity -
you are absolutely right that there are always variances from individual to individual - there are in any disease - the trick is to get some sort of an understanding of where the diagnostic parameters are, and WHY they are so placed;
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.
it's good you've started digging, even more study will show you that there are 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....only a very few years ago, most docs hadn't even heard of CH, so from one extreme to the other
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 -
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
re: triggers
the issue of triggers has always been one of great debate - it is very difficult to pin down - and it is VERY important to remember that something appearing in print means NOTHING, unless it is carefully documented and results from carefully controlled observation, and even then it is subject to correction or amendment at any time
a big problem with defining triggers or remedies is the variability you mentioned originally - both between individuals and within each case - in cluster headache 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;
in my case, I know that MANY apparent triggers and remedies that appeared to be a "breakthrough" turned out to be entirely coincidental, and I have learned to be very, very patient before accepting anything as a "building block" in my understanding of CH;
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: when in a cluster cycle, consumption of alcohol will nearly always produce a more severe attack, in fairly short order, than would have been expected otherwise -
re: remedies-
same as triggers, I learned many many years ago not to trust a solution to CH until I have been able to repeat the same effect over & over - and that takes a LONG time -
I guess I was making an assumption in my original posting, that it was understood that at its root, science is really nothing more than accurate description........which is exactly what specification is..........what we have to do is get a level of standardized description established that will be useful in discussion with all parties.......and yes there IS a specific malady that those of us who have both suffered and studied it for many many years recognize....
as far as what the specific words "cluster headache" include - frankly I don't care, but they have to mean something; so if you want them to include a variety of malady that automatically includes everybody with repetitive short-attack head pain, fine......
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 ?