Posted by gary g (208.133.221.202) on July 27, 1999 at 11:16:20:
In Reply to: CHs suddenly happening at odd times posted by Larry R. on July 27, 1999 at 08:21:15:
Hi Larry
sorry, but sounds like the standard story to me
you started early @14
maybe just "catching up" to more usual early adult onset, except in your case it manifests as increase in existing pattern
I started @20, with 4-6 wk clusters, of relatively mild attacks, in the fall
for 15 years they got longer, with more attacks/day, and worse attacks, by early 30s I was nearly chronic with many VERY severe attacks included
in my mid30s they began to back off a little, both in cluster length and average attack intensity
by 40s I was back down to average of 4-5 months total/year, with reduced avg attack intensity (but still MUCH worse than the earliest years)
wish I could say ALWAYS better, but I have had the most horrifying individual attacks of my life in recent clusters - it's the overall picture that seems to have moderated
only really notable BIG correlations
(I'm a real stickler about not jumping to conclusions, for anything to "impress" me re: treatment, etc it has to be consistent, repeatable in different situations over time, and VERY clear)
1. "stress" level just doesn't seem to correlate for me, if I look at long periods of time - -
2. the increase/decrease in my pattern correlates very closely with my drinking history:
in my 20s & early 30s I hit the jug pretty heavy, at an increasing rate until 16 years ago - - my headache record ALSO increased in frequency & severity during that time; when I quit in 1983 I immediately went 14 months without a single twitch - unfortunately they came back - BUT the running average has been improving the longer I've been sober
I DON'T believe booze causes them, but I am CONVINCED that if we have CH and drink, it WILL make them much worse than what they would be if we didn't - and I'm talking "big picture" over time
3. oxygen oxygen oxygen - - the only DRAMATICALLY effective attack relief I've found
suggestions :
if you drink, whatever you do:don't drink during clusters; and consider stopping altogether
you didn't mention oxygen
go thru the msg bd archives & read all the stuff about oxygen
if your doc has been using the same treatment for 10 years - do your homework - go thru the msg bd archives, search other medical sites re:CH, etc and then if you find you're a bit behind the treatment curve (which 10 yrs is, IF the doc hasn't kept up) offer the new info to the doc
good luck !