Posted by James (64.217.53.39) on July 13, 2000 at 09:32:29:
I want to disclose my reason for posting to this board and be up front about it. Yes, I have CH's and have had for 18 years. My story is the same as many of yours. I'm not special in any big way. I'm an accountant and part-time farmer. I'm married and our children are grown and gone. I'm 53 and I have a brother, also with CH's who is 45 years old.
I might as well also say that I'm a Christian, Baptist, and politically conservative, and a Vietnam Vet(8 years Army). I'm financially middle-class and pay a lot of taxes. I come to this board as an activest and have decided to become more of one.
I've complained privately for years about no help with CH's. Not enough research and no money for it. I have other causes, such as cancer which we donate to. Most of the inovation in CH treatment has come because of Migraine research.
My goal is to start a support group for Cluster Heads in my area of Central Texas and start applying pressure to local medical facilities, doctors and politicians. The least I would hope to do is convince local doctors to give CH's pain medication. They give it to all sorts of patients but almost totally refuse to give it to cluster heads. It's a brutal approach to treatment. There are heroin addicts who function better than I do 4 or 5 months out of the year. Cocaine freaks who relate better to their families, etc., etc..
The real kicker for me, is the cry for more billions for AIDS research. We are already giving millions and millions to this cause. That's my tax money and yours. The entire disease could be stopped overnight with a little thought by those causing its' spread. As far as we know, we did nothing to cause clusters. Would you have unprotected, illicit sex if you knew you would have this terrible disease? I have sympathy for all who are sick but it first goes to those who did nothing to become sick. Pick a disease there are plenty of them.
This disease of cluster headaches can't seem to muster enough attention to get medical schools to even mention it in a class. Surely we, as sufferers can do better than that.
I believe that clusters are particially genetic. Do you want to pass this along to your sons or grandsons and daughters? No one would want that but if we do nothing, nothing will change. Not much has changed in the 18 years I've had CHs. We see that everyday on this page. Still doctors that don't know anything. New treatments but still no clue as to the cause. I want a cure, not just a treatment.
I will now ask if any of you have tried the political approach or support groups or know of any who are vocal. Please let me know if you have any knowledge in this area. If you are in or near Central Texas please contact me at my e-mail address.
If you went to the emergency room after cutting off a toe or finger, would the doctor think twice about giving you a pain killer? I've thought about it.