Posted by Laurence on August 31, 1998 at 21:23:12:
In Reply to: Remissions? posted by T. Reagan on August 31, 1998 at 18:31:01:
Hi T. Reagan
Having also read your harrowing account of your medication and cluster experiences in the guest book, it might be almost presumptuous of me in the circumstances to comment, as my own cluster experience is minimal by comparison. However, the gap between cycles for me was 4 years the first time and then 3 years to my current third bout. The bouts themselves have lasted about 6 to 8 weeks but I continue to experience the shadow sensations for several months after the headaches are over.
Lithium broke the cycle for me on the first two occasions and this time round it was a combination (probably) of Prednisone and Lithium. This bout I have also had to use oxygen as an abortive.
From here on in I can for the most part only speculate. Although you ask “what seems to break the CH free cycles?” I am not sure that is the right way to look at it. Each of us seems to have different cycles. From what I have read here, most seem to suffer one cycle (average 6 weeks in length) every one or two years. Some have more than one cycle every year. A small minority (10 %) of cluster folk suffer a chronic condition in which there is no break for at least a year. In some the gap between cycles shortens, even going chronic, and for others it lengthens. There seems little rhyme or reason to it, although there must I assume be some underlying neuro-chemical factor that makes our condition better or worse at times. Returning to your question, I don’t think anything I do as such breaks my “CH free cycle”, that’s just the way it is. Drugs and time eventually break my actual headache cycle.
I had never incidentally thought of myself as being “in remission” in between cycles, just completely free of pain from a condition which every now and then flares up. As doctors haven’t figured out yet precisely where in our heads the headaches actually start from, or what causes them, I think we are all unfortunately going to have wait some time before heaving a sigh of relief when they have gone completely from our lives. In the meantime, we must enjoy the gaps between cycles to the full, and keep our fingers crossed that if and when the next bout fires up the drugs or whatever we took last time still work or that there are new, more effective treatments available for us to try.
For now, welcome to the website and I truly hope that your clusters have gone forever.
Bye
Laurence