Posted by John G Reynolds, Phoenix, AZ on September 09, 1998 at 15:25:05:
In Reply to: If this is just the beginning I'm not sure how long I can keep fighting. posted by Jonathan Poulter on September 08, 1998 at 11:52:11:
Jonathan, I can't begin to tell you how much I sympathize with you. I've been a chronic cluster sufferer for 12 years. I'm 38 now and it has been quite rough. You can see my responses above to Ghostrider on the topic of Misery.
A couple of ideas spring to mind when I see your anguish. One thing that really helped me (and still helps me) is a fairly new kind of anti-depression therapy called cognitive therapy. I've done it by myself using a book called "Feeling Good: The New Mood Therapy." I may have had even better results had I used the techniques with a therapist to help guide me.
The therapy is the most common-sense, easy-to-use stuff I've ever seen. It works so well to fight any kinds of negative, self-defeating thoughts. But for the hopelessness associated with my cluster headaches, it has been and still is unbelievably good. I don't if Dr. Burns' books are available in England, but you can find several good titles on cognitive therapy or cognitive/behavior therapy at amazon.com and either them order them that way or just pick one up at a local book shop. The basic idea is that you can easily learn to talk back (actually write back--the written exercise is the key) to your negative and hopeless thoughts. No matter how realistic your thoughts and attitudes seem, you can learn (in just the 1st few chapters) to identify the distortions and answer them with much more realistic and less debilitating ones. Then you can concentrate on overcoming the headaches and not spend so much time trying to fight not just the headaches but the paralyzing hopelessness that they bring.
I know that I'll have to do some more "two column technique" exercises (the simplified version of the most basic and easiest technique that Dr Burns shows) to combat all the gloomy thoughts I've had lately since my headaches have again continued to break through all the meds that I've been on. Once you've learned the technique, it's easier and easier each time to contradict the negative thoughts, but I still have to sit down and write out the negative thoughts and keep answering some of the same ones that I get every time the meds quit working.
Speaking of rambling on and on...anyway, I'll keep going on another topic that you raised--steroids like predisone. I'm on a tapering round right now that will be over with in two weeks. I've noticed a new side effect (actually my wife noticed it first) that has just come up the last two times I've had to go through a session with prednisone--I tend to get be very on edge and short-tempered, very irritable and any little thing can set me off. When I'm strung out by not getting enough sleep due to the headaches, I'm sure that doesn't help my temper, but I'm normally not very irritable and there is definitely a marked increase when I'm on predisone. The point is that I would try to limit predisone and other steroids to as short of time as possible. I've heard that they also make depression a lot worse.
Drop me a line at johnreynolds@webtv.net if you can stand any more details.
Again, sorry about your headaches; hang in there.