Posted by Van (66.56.183.0) on June 21, 2001 at 12:08:34:
In Reply to: Two different things posted by pinksharkmark on June 21, 2001 at 10:07:58:
I used to be on this board a lot, mostly 1999. I have had clusters, episodic, basically since i was 7-9 yrs old, based on my mothers description of events.
When I first started visiting the site, I found and printed all the info. I took it to my doc, did some education and was able to have an effect on my clusters (Imitrex) that works often.
I visited other sites, posted some of what I learned. I read posts by others to learn more. I contacted and became friends with people who lived near me who were on the Where we live list. I still keep in touch with some of them. The site lost most of them.
Why?
1. They would post, looking for info. Each was repeatedly blasted by someone for something. If there were 6 responses to their post, 1 or 2 gave solid consise info. 1 or 2 gave emotional responses. The rest were of no help at all.
2. The chat site. (I'll admit to having been guilty of chat abuse myself). At night, dreading sleep because it wakes the demon, they would enter the chat site---desiring immediate attention, love, companionship, support, etc./whatever. Wading through the non-CH chat was not fun, not rewarding and left them feeling more alone than when they started. They left.
3. Often, they would go to a neuro for the first time, hear a lot that they did not understand, and come looking for specific answers to their questions. They did need help at that time--see #1 above.
4. Perhaps PinkSharkMark has a good idea. Tell people that this is a like a bunch of family members and might take a while to get accustomed to. In big bold letters. Perhaps also list all of the names of people who prefer to give people a hard time, so they can ignore their posts and focus only on the answers they deire.
5. They would not come back unless there was something that they need. Some people do come back looking for emotional support. I suspect many come back because they are looking for new info since their last episode. To be honest, there is not a lot that I have found that is NEW in terms of drugs or treatments since I was very regular a couple of years ago. My neuro sends me stuff when she learns of it--I am her only cluster patient. She agrees that there is not much new this time around. We are all still trying to get the medical community to pay more attention--that is one thing that has progressed.
Let people explore. Run them off and come back. If one of them finds something that would work, and they were mad because of the way they were treated on the site, they might just say--"let them suffer, they deserve it", never revealing the great news they have.
That is all, folks. I'll not speak of this subject again.