Posted by John Bown (206.165.44.194) on July 14, 1999 at 21:52:38:
I am pretty new to posting on this site, but I have endured 10-plus years of chronic clusters and a couple of hundred different "try this's" from every kind of doctor.
One of the most helpful doctors was Lee Kudrow of Encimo, CA. I was a patient of his for about a year, and he helped adjust the best med's available at that time through daily phone calls. I knew that Lisa was his daughter, but I don't know what her involvement with the cluster headache movement is. I would like to know.
I am also intrigued by the references herein to OUCH. I have picked up that it stands for Organization for Understanding of Cluster Headaches, is that correct? Is this an actual organization? How can I learn more about it? Is there a website?
My current effort to kill the evil bastard consists of Zoloft, lots of Neurontin, DHE shots almost every night, and Stadol nose spray when I just can't take it any more and need to be somewhere else. I drink loads of water (unless I forget) and use extremely hot towels on temple and eye to distract myself and give something to do while waiting for the drugs to kick in or for some kind soul to shoot me and put me out of my misery. My wife is wonderful in spite of the depression, loss of sex drive, and my bad moods in the evenings while I fear relaxing and fear sleep even more. I don't know how she puts up with me.
Enough. Please let me know about Lisa and OUCH if you know and have a minute. Thanks, and know you have my best and warmest wishes for a day free of pain.