Posted by gary g (208.133.217.74) on October 12, 1999 at 12:48:00:
quite a few dozen brawling posts back, there was a pretty worthwile thread about rebound headaches - I'd like to see it stay on the table a bit more
there seems to be a temptation to rush to conclusions about CH treatment success, relative to the apparent occurence of "rebound headaches"
the whole concept of rebound headache as a consequence of medications, whatever, is VERY tricky in cluster headache
it's more, as far as my reading infers, a transferred concept from migraine treatment study, and general headpain mgmt regimens, which doesn't fit quite as neatly in the viw of CH
in CH, even within individual cases, there can be such a HUGE variance over time in the frequency and intensity of the individual attacks, that it is highly speculative to cut assesment of the cause of repetitive attacks too finely
it takes REAL close detailing to split out the separate attacks in some cases - and there isn't even any conventional standard I can find for what constitutes a discrete attack incidence - which is important, and a probable route to the ultimate answers
for you mathematicians, chemists, statisticians etc - basically, we run into a very severe "significant number" error factor anyway, which should automatically disqualify any conclusion so-derived as a fundamental premise to build further info upon
for the innumerate -
basically means you can't make finely detailed findings based on general observations, and you can't make globally inclusive statements based on very small universes
I've had probably 60 -70 full blown clusters of 2-20 months myself, over almost 30 years, and have always used a attack-related-symptom free interval of an hour or more as the discrimination between separate attacks or a prolonged single attack,
for logging purposes (which can help tremendously in trying different therapies)
Got that spec from a HA clinic years ago, and have seen little reason to change it as protocol - simply because it seems to yield consistently accurate patterns in charting the attacks, which in turn is of great assistance - over a period of years - in learning about one's own case, and what really does & doesn't help (memory being ABSOLUTELY unreliable for meaningful information)
also, if you compute -
allow 1 hour for an attack cycle, start to finish, then 2 hours "clear", that's 3 hours
that allows for 8 attacks in a 24 hour day, which is not at all unusual for many CH patients, for at least some of their cluster
I can tell you ABSOLUTELY - it is often satisfying emotionally, but usually VERY risky factually, to come to any hardegded conclusions about CH patterns based on anything less than the demonstrated pattern of SEVERAL cluster series -
and for MOST experienced patients, their established pattern usually comes down to some very general statements re: season, duration, attack frequency, attack intensity etc....each of which allows for and "catalogs" quite a variance in detail
the take home in this is:
I believe it is not EMOTIONALLY helpful to deal with this challenge by being overanxious to get all the answers real fast, jumping wholeheartedly into easy answers prematurely, and then have to deal with the inevitable letdown & disappointment when yet another bright idea soils the sheets,
that emotional rollercoaster seriously increases the despair and disappointment that comes with living the CH life
I know some of you feel compelled to humbug the notion that emotional attitude can play any part in dealing with CH, but I adamantly disagree
too many of us have discovered - over long periods of repeated attempts- that addressing our emotional stability and "attitude quotient" during a cluster CAN mitigate the overall negative effects of the disease upon out lives
(NOT stop attacks, or even reduce the perceived pain, but rather make the BIG picture a lot easier to bear)
if you don't want to add that valuable tool to your CH arsenal FINE - it's no problem to me,
but it IS right up there with Imitrex and oxygen as a beneficial tool for many many people
granted, this is a VERY UNAMERICAN approach, because it denies immediate gratification, and requires toiling away for an indefinite period of time with no known pot of gold at the end of the rainbow, but so what?
most Americans think The Wizard of Oz is a children's story, and never have the slightest realization it was actually a very involved & extremely clever economic satire, and a MUCH better polticial piece than it was a kid's story - much of the CH quest is similar, even if we don't see it on the surface or by taking the Oprah Show approach
(and if you don't understand why I see that as relevant to a lot of what we have to deal with in the CH challenge sobeit - your loss frankly
if even one person who sees this knows what I'm talking about, and we connect on it, and it helps clarify our perceptions and moves us forward in understanding CH, it's worth the effort & bandwidth)
ONE MORE THING - not exclusively CH but very relevant to productive use of CHMB:
I just read - to my amazement - a written running tantrum over grammar and writing style -
I'm here now to tell the selfstyled Grammar Police:
you reveal your abject dilettantish,amateur status as mavens of the inked phrase, when you start getting torqued about that sort of thing inthis context -
about the only things I have consistently had success with in my "day jobs" over the years, have to do with the written word -
tech writing, copy editing, small publishing, bookmongering, etc
and I'm here to tell you for a fact, with some degree of authority:
1. NOTHING of worth and value is ever written in "propah english" the first time around
2. Nobody with a life is gonna waste a bunch of time rewriting and seriously editing what amounts to a VERY ephemeral conversational exchange
3. Nobody with enough experience to DO such rewrite properly and consistently is gonna spend a second on it without getting paid
So, if you Ted & others who share his views want to take up a collection for my salary, I will gladly draw up a contract proposal to provide editing and reposting services for CHMB
Rate is $50/hour, I cover my own taxes etc, and this post alone would be about $75 to do well
Pay up or shut up
PS to Riccardo & Ueli -
the MESSAGE you guys deliver,in English as a 2nd (or 3rd, probably)language, is worth 10X what 1/2 the so-called native english speaking messages here amount to