Posted by Jamie Myers on March 07, 1999 at 17:39:42:
In Reply to: A rambling first post to this site. posted by pinksharkmark on March 07, 1999 at 11:44:29:
Sorry for the attempt at humor, but sometimes it's the best thing we have (besides comisserating with each other). I'll bet we could all write a book on the symptoms, the failures of the medical (and insurance) "system". It sounds like you've been down the same road as many and all you can do is find a Dr that is understanding and willing to keep trying until you find something that breaks the cycle (even if only once).
My current cycle (Sorry, it sounds funny saying that being Male even witha name like Jamie) has been going on since mid January and it seems to be slopeing down from 4-5 per day to about 2 per day. Unfrtunately they are almost always at night and I'm still wasted during the day and have shadows most of the time. This time they have been using Neurontin and for some reason Imitrex justs eemd to not help, so I'm using Migranal. Also some occaisional Fioricet (Not very helpful).
Sorry, enough about me. My PERSONAL opinion is that Demerol seems to work GREAT for me. It doesn't put me to sleep, just magically makes it not hurt (or, by the time I get it, the bloddy headache is going away anyway). The only way I've been able to get is by a trip to the Hospital. I'm sure you can imagine the time, logistics, insurance issues, etc. The big concern is the more often you use it, the less effective it is and it takes more and more to work (Can you spell addiction). I've heard stories about things like Methadone but have NO knowledge and haven't really done any research on it.
Most all of us are hooked up with a Neurologist, but I wonder if we would be better off with a pain management specialist. Something I'm going to look into for myself this week.
I'm sure it's even more challenging being in the DR with even more limited medical resources. Besides water, I've found some relief from cold air (something there may also be a shortage of in the DR). I live around Chicago, and I've been known to sit in the car in 40 degree weather with the Air COnditioning running full blast. I never had much luck with O2. The Hospital tried it a couple of times, but it seems to help others.
Hang in there. The is much more knowledge out the now than when my CH's started 6 years ago and I expect things to improve even more. Unfortunately, we all suffer while the changes ocurr at a much slower pace than we would like.
Don't do anything rash. Stay in touch with us here and let us know if there's anything we can do to help.
Hang in there. There is a solution for you out there somewhere. I know just going throug this site has given LOTs of new things to consider trying.
jamie