Posted by Cassandra on August 24, 1998 at 23:31:35:
In Reply to: Re: Hello! ... just like to say thank you myself :) ! posted by Jean-Louis on August 24, 1998 at 18:18:01:
My sincere apologies, Jean-Louis, if my mother and I have offended you or various members of the medical community. That was never my intent, and I'm sure it was not my mother's. She was frustrated and hurting, and she wanted to share what has happened in her quest for someone to listen and care about her pain.
So many people posting to this board are looking for compassion. They hurt, and sometimes it helps to know that there are others out there looking for the same kind of understanding. I don't suffer from these headaches myself, my mother does. After a week or so of having a bout with these CH's, she feels she is putting her burden on others and draws into her pain. She no longer controls it; it controls her. No one else we know has ever experienced these. We know migraines and tension/stress headaches - how can we help her?
I turned to the internet to try to help my mother collect as much information as I could to help her find proper treatment. I had no idea there would be so much help here... not only suggestions on meds to try, but people reaching out to another person in pain, a complete stranger, and telling her to hang in there, that people are there for her and they know EXACTLY what she's going through. Psychologically, that's better than slapping your money on the table for an hour's chat with a shrink. Everybody I've talked to or had responses from are REAL. They don't have pat answers or holier than thou attitudes; they offer themselves and the knowledge they have and know that it's really only one day at a time until this present episode is over. It's all anyone can do, but it means a lot more coming from someone who's been there.
I feel it's natural for people to complain when things don't go the way they expect. Call it human nature. I didn't think this site was dedicated solely to the purpose of presenting facts on medication for cluster headaches when I found it, and I still don't feel that's why it's here. I think DJ created this site for CH sufferers and their friends and family to find others to reach out to and share their experiences - good and bad. If that includes a few ripostes about doctors that don't care to treat the CH as a potentially life-threatening (suicidal) problem, then that's alright with me. Through my mother, I can relate to that problem, and I agree that we need to do something about getting the medical community actively working on the subject at hand. If somebody has a suggestion of how to go about doing that, I'd be glad to jump in with both feet.
This is a public forum, and I don't think anyone posting to this board should be reprimanded for sharing their frustration. Everybody needs to have somebody to talk to and vent once in a while. Every posting I've seen asking for help has received at least one answer from someone else reaching out, trying to help. Doesn't that say something about the value of this board?
Compassion, my friends... that's what makes this site a God-send. We are all linked through pain, ours or our loved ones.
Wishing you a restful, pain-free night,
Cassandra