Posted by Kim on November 12, 2001 at 09:41:02:
I'm a fifty-nine year old male, (Yes Virginia, KIM is a Male name) ... and I have had CH since I was nineteen. The first was when I was in the Navy, and occurred when I experienced my first "dive" on a submarine. I have always blamed the initial CH on excessive pressure. My attacks have averaged up to five times a year, lasting each time anywhere from two weeks to eight weeks in the cluster. Over all those years, I have been diagnosed with everything from migraines to brain tumors. I have seen every specialist known to man, and have been on every medication that anyone on this board has mentioned. I was once 'almost' talked into the nerve cutting procedure by a neurologist. I am convinced that some things and meds will work for some people, that will only increase the pain and suffering for others.
I am surprised that there is little mention of an Injectable treatment called DHE. (Dihydroergotamine mesylate injections). This has been my ONLY salvation. This is a muscular injection that I inject in my thigh muscle with a inch and a half syringe. Better and quicker if it's injected into a back muscle. However, you would need another person to do this, and when I am having a headache, no one wants to be within a 5 mile radius to me.. The Imitrex injections did nothing to relieve or prevent the CH. In fact, I thought I was having a heart attack every time I injected myself.
The DHE does not prevent, but will relieve and stop the attack within twenty minutes after the shot is given. If my cycle goes beyond eight weeks, the DHE can be injected intravenously over a six or seven day period in an attempt to break the cycle. This is dangerous, and must be done under the doctors supervision. They use to admit me to the hospital for this, but now is being done on an out patient treatment. After this 'breaks' the cluster cycle, I can usually go a couple of months to a year, pain free. There is absolutely no prevention for me to keep these headaches away. I've tried everything! ... The only thing that slowed down the occurrences was a Gaul Bladder operation... I was in a cluster when my Gaul Bladder started leaking. I was rushed to hospital, and operated on for removal of the Gaul bladder. I was headache free for 19 months after that. I now have recurrences about every year and a half, but they do hang around longer that they use to. Without the DHE injections, I would have committed suicide long ago. There is one thing I have noticed through the years... Geographical Location!
I work in radio and television, and when I am in a cluster,... I don't work!
In my work, I use to fly from the East coast out to California about four times a year for Voice Over work. I noticed during that time, if I was in a cluster and flew out to California, the headaches disappeared the moment I landed in LA, and I was free all the while I was there... Upon returning, they were back that same evening. On the other hand, I could leave here while not in a cluster, and be in one the moment I landed in LA. This reassuring Dr. Horan's theory that this does have something to do with some weird gradational pull on the earth at different seasons of the year or moon cycles. This prompted one doctor to tell me to "Jump On A Plane" everytime I entered a cycle. Nice if you could afford this treatment. .... I can't!
People out there that can not get relief, please ask your doctor to look into the DHE treatment. It does give you some relief from the pain of each attack. My doctor is Steven Silberstein at the Philadelphia headache clinic.
I would be glad to give his office phone number to anybody that wants it.
I hope I helped someone out there... Like all of you, I am looking for a total cure to be free of these 'devils' for the rest of my life. I live in fear waiting for the next cluster, and live in total hopelessness when in one. .... It ain't no fun!