Posted by Elaine (24.88.1.116) on March 30, 2000 at 11:07:15:
Clusters are changing for me now. I am not sure what’s happening. I had a cluster just about everyday for the last 20 years skipping a day here and there. If I was real lucky I would miss a week every six months or so. Most all my clusters were at night and a few during the day. When I found this site in April I was having as many as eight cluster a day. No sleep just lots of pain. Then the doctor and I found the right combination of drugs that seemed to help me. Neurontin, verapamil, and, imitrex for when I got a cluster. We worked for weeks on the dosage till we found what worked. I dropped to four clusters a week. I thought I was in heaven LOL. Then I had surgery in November got hit about a week or so afterwards for a day or two then they stopped for almost a month. They came back again a couple a day finally got then back to about four a week. Then had surgery again, No clusters for a little over a month. I went on a trip to relax and get away from things and was hit bad. I came home and have had only a couple a week. I am really enjoying not having them and I do not seem to wake up wondering when I am going to have one. The strangest thing about all of this is I have been off all medication for the last few weeks. I have shadows but they are small ones. Now I have had regular headaches that have lasted a couple of days that I am not use to but they are not bad, compared to clusters they come on about every two weeks. Has anyone ever went from chronic to episodic and if so how did the change take place? Did you just wake up and no longer have them for a year or so, or did they go away slowly? I was just wondering if there is any type of pattern.