Posted by Barbara D. on April 12, 1999 at 12:17:52:
In Reply to: Several questions posted by Dennis P on April 12, 1999 at 11:12:41:
Dennis,
Thanks for the support. You really seem concerned, so I'll answer what I can:
1. There are a lot of Cheads who have never touched alcohol. It is a trigger for some and not for others.
2. Tried whirlpool baths. Sometimes they helped a little at the time, but couldn't see a difference in the HAs.
3. A harness wouldn't help cause we usually can't be still. We HAVE to move, cry, bang or heads or something. Don't know why except the pain is so bad we just have to do something till it receeds. We are ALL exhausted when the HA finally stops, but are afraid to lie down for fear of it returning.
4. This site is the best support group around. There are some in different parts of the country (not in mine), but for understanding this is the best place. Read the posts from back when and you'll see we are "family" here and do try to help each other. Get your dad on here.
5. Glaxo-Wellcome (Imitrex) has a plan for helping with Imitrex (see previous posts - about a month ago). There's an address and phone number.We need grants for research. No one seems to know much about them.
6. Again, go back on board and read some of the previous posts. We have a problem finding docs who even know what a CH is. There are very few who are experts - no matter what they say.
7. Yes, there are machines out there and they are great. The problem is the rate. I was told they would only go to about 6 liters per min. We need at least 8. The cost on them is about $3500.
8. We usually share the lastest info on "possible" cures. But we've found out what works for one might not work for the other. If you find anything new, let us know. We're all to the point of trying anything. (Has your dad tried the water treatment - previous post? - It's worked for several.)
Again, thank you for trying to be there for your dad as well as the rest of us. Usually when we're going through a cluster, we WANT to be alone cause we're crazy (at least to a layperson). Getting your dad on this board will probably be the best help you can give him. CH is just something that you can't explain unless you're suffering. In the middle of the night, this site has been a lifesaver for a lot of us.
Hugs BD