Posted by Sue on May 29, 1998 at 22:33:07:
I have lived with these awful cluster headaches now for more than 13 years. Eposodic for the first 9 and chronic for the last 4. Like many of my fellow sufferers out there, in the beginning I too was trying to find some "logical explanation" for the beast that had invaded my head out of nowhere. Obviously I am still in a search or I wouldn't be here on this message board or in the chat rooms at night. I agree that there simply are not enough of us out here that have these things for the medical
community to spend much, if any, time trying to find what "may" actually cause them. The things I have learned along this tortuous path has been these few answers. (I am not trying to make light of anyone's trying to find something better, so am I!) The FIRST step has to be to STOP the cycle, the longer it is allowed to continue the longer it will. Our Dr's need to know that it is unacceptable to us to live with this excruciating pain! If the medicine prescriped doesn't lessen the pain in a 5 to 7 day period
tell them!! Ask for something else! If they don't listen find another one who will. The SECOND step is to keep trying until you find something that works. As we see here the same things don't work for everyone, but it's imparitive to try to STOP THE CYCLE as quickly as possible.
I've also been reading alot here about what some people think may or may not be "TRIGGERS". (Again not trying to offend anyone) Being an allergy sufferer for many years, also having moved and lived in more than three disticntly different types of climates, altitudes, etc... I don't find any correlation between any of these things and the CH's. If it were true that something "triggered" these, then wouldn't these same things trigger them at any time? When migrain sufferers have triggers it happens every time they are in contact
with that specific thing. We only seem to correlate triggers when we are in a cycle. The only thing that seems to trigger me is alcohol and then ONLY when I am about to start or am in a CH cycle.
I have been taking verapamil and lithium as preventive meds now for about 2 1/2 years. They must have been working since I was headache free for 2 years, until about 4 wks ago. During the time I am not in a cycle my dosage is cut down and now we have raised it back up and are treating with prednisone and imitrex nasal spray as an abortive. I'll be the first to admit that now I'm more than a little scarred since this may mean changing meds AGAIN. That's the biggest problem I have with these, what works now may not work later.
My nuero is more than understanding when I call up with an attitude because I am in pain! Two years ago when we finally found what worked there was only one more med out there for me to try. I was astonished to see how many new ones have been found to work in just the last 2 years.
My intention here is not to upset or anger anyone. I just wanted to let so many of you that I have read postings from and chatted with to know that I certainly know what you're going through and that I keep you all in my thoughts. We, unfortunately, have to take control with these headaches and in many instances that means telling our Dr's what they should be telling us. Hopefully some day soon they will find one thing that is common to all of us and be able to "fix" it.
Good luck to all