Posted by Michael J. Robinson (207.90.118.48) on January 03, 2002 at 11:05:04:
My name is Michael Robinson and I've been a CH victim for seven years. I've tried every preventative/abortive medication know to man kind. Today (1-3-02) the headache is back again. I've been seeing a pain specialist in Dayton, Ohio, my hometown, for about four years. He wants to try a surgery that is called radio frequency. He has located the pain to come from the occipital nerve. He has performed 4 blocks, basically injecting lytocain into the base of my skull which takes the pain away instantly. I am a bit weary of having this surgery as it is irreversible. Anyone out there have radio frequency performed. Any successes? Any failures? Right now the only thing that gets rid of the cluster is large dose of Stadol (4 Mg.) and Phenegren (50 Mg.). It knocks me out for about 6 hours and when I wake the headache is normally gone. The clusters have been occuring on a very regular basis. Every seven days. Every Tuesday it happens. Anyone have this same experience? When my doctor's office is closed I am forced to go to the ER where I have been basically blackballed. Every doctor seems to think I'm a junky. I'm so sick and tired of this treatment. My only wish is that I could transfer this pain to each doctor I've seen in the past seven years so they could experience it. Then they wouldn't even ask any questions. That's not going to happen. I can still wish. Currently, I am on MS Contin 30 Mg. a day. It helps me get through the day and doesn't make me feel funny. Any recommendations? Should I have this surgery performed. I'm also debating having Botox injections into the occipital nerve. Has anyone out there had any success with Botox injections? Thank you and I hope I get some input! Thank God for this website. It's nice to know people out there experience what I experience.