Posted by Todd (63.10.27.219) on June 29, 1999 at 17:25:11:
I won't rat anyone out, but I found out today that another of us contacted their local media and is also going to be interviewed by a local tv station. Here are some ideas of what I think are key points we should try to communicate. Naturally, the tv folks will edit us down to a minute or so, but I figure that we should try to cover all the major points with the reporters and hopefully they'll get the really big ones in.
The reason for this long post is to again solicit y'all's input. What key ideas have I forgotten? What else should we try to say?
Cluster Headaches-Key Points
Debilitating pain—the quote from Newsweek i.e. “the most intense sustained pain a human being can experience” or something like that. Gotta check it on the board.
Episodic vs. Chronic variations and the % of people afflicted with each. Maybe also the fact that e can become c and vice versa.
How it affects life – impact on careers, families
Leads to depression and possibly even to suicide – certainly to suicidal thoughts
“Best Case” (if you can use such a term) – episodes, which last from 4 to 16 weeks, cause extreme exhaustion due to lack of sleep and the effects of dealing with the pain, as well as side-effects from the medications. Can take several additional weeks after the end of the episode to recover.
No cause is yet known, although Dr. Goadsby’s recent research findings are encouraging.
No cure. In fact, there is no fully effective preventative treatment. Abortive treatments are of marginal value at best, due in part to the rapid onset with little or no warning and to the often short duration of attack (30 minutes or so). Few drugs can react quickly enough.
The limited number of drugs typically used have generally not even been tested for efficacy or safety on cluster headaches. They are actually migraine treatments which may or may not work for CH and are, in reality, only prescribed on a trial and error basis.
All of these drugs have potentially serious side effects, including respiratory problems, increased blood pressure and heightened risk of heart attack. Fatalities have occurred in patients taking prescribed dosages.
Health insurance frequently denies coverage of the medications or tightly limits the number of doses covered per month, typically based upon a migraine model. Four doses of Imitrex autoinjectors per month may be on the high side for a migraine sufferer, but doesn’t even scratch the surface of CH’ers who typically experience 3 to 6 PER DAY.
Additionally, most insurance companies will deny claims for medical oxygen, even though they will cover it for respiratory illnesses. Again, the lack of body of research creates a Catch-22 for us.
A disturbingly high proportion of medical professionals lack knowledge of CH—particularly of the more recent findings. Many doctors still believe CH is the same as migraine, that it doesn’t affect women, that people with hazel eyes are more likely to have CH and so on.
CH has been a lonely, hidden disorder. Most CH’rs hide it because it’s embarrassing to let others know you missed work for a ‘headache’. Until the web site, most of us had never met another CH’r.