Posted by Andy (151.173.163.6) on December 01, 2000 at 09:22:23:
Thanks to all who post on this board. It is a great source of information and comfort for those of us suffering with CH. I am 38 and have been a sufferer for about 18 years. I never really knew what I had for a long time -- just used to refer to getting "eye headaches." My pattern is pretty consistent and, from what I've seen from others, I'm pretty fortunate. I'm episodic, usually every other year for around 8 weeks when the seasons change in the Fall. Usually get hit at the early part of the cycle between 1-3 in the morning. Usually get 1 every other night that gets damn close to a 10 (can't actually call it a 10 because I can't think straight enough during it to consider killing myself - LOL) and one other during the same night that is of lesser magnitude -- call it 7 or 8. Prior to this current cycle, I've never taken meds for them -- just sneak downstairs to avoid waking my wife, get a glass full of ice chips, lie on the couch with the TV on for a distraction, blow the left side of my nose, chew ice, put ice chips on my red, swollen left eye and intermittently beat the crap out of my sofa cushions.
This go-around I finally asked my doctor for something and he gave me Verapamil (Covera-HS) -- slow release variety. It take one before bed. It's really done pretty well by me. Seems to have reduced the frequency and taken the edge of the "breakthrough" clusters that I get.
My question for those of you who have gone through this before -- i.e., taking meds and seeing some improvement (my sincere condolences to all who don't feel improvement)-- when did you get off the meds? Is it just a matter of trial and error? I've been pain-free for about 4 days now, but I'm afraid that if I go off the Verapamil I'll be back where I started from.
Any thoughts solicited.
Thanks in advance and my sincere wishes for pain-free times for all of you suffering with CH.
Best.
Andy