Posted by Cathy (24.95.189.21) on August 26, 1999 at 08:33:27:
In Reply to: DJ I miss clusterheaches.com ! posted by Elaine on August 25, 1999 at 23:58:42:
Although I agree with you, to an extent, that this board is for cluster sufferers, it is, I feel, a board for information and education. As a sufferer who gets both, I put myself in the shoes of those who describe their pain, but don't seem to know what to call it. Or call it a cluster, but the symptoms don't seem to coordinate with what WE know is a cluster. As I have done with Anthony / "cured" / ant / ac below, I think it is imperative that WE help him figure out what he has. WE all know that all doctors aren't as "up to speed" about this illness as some of us lay people. I feel it is our job to help these people who may be misguided to understand the difference between the two types of attacks. That is why I posted such a lengthy description of the two. As one who suffers from both, and been correctly diagnosed by my neuro in my opinion, I feel it is part of my responsibility as a member of this board to try and educate EVERYONE about dissimilarities between the 2 attacks---along with some of the few similarities. As I told someone a while back, WE have NO CONTROL over who visits this board. We do, however, have control on what information to present and how to present it. We do have the control to help those people who do not understand the difference and go to a "country bumpkus" doctor who has little, if any experience with clusters. Put yourself in their shoes just for a minute. If you came to this board after visiting a doctor who misdiagnosed you as a person with migraines, read information on the two afflictions, felt you weren't getting migraines, but rather clusters, what would you do? Probably go back to your dr, or to a new one, with the information saying "This is a cluster....I don't think I have this. This is a migraine. Treat me for a migraine." Correct diagnosis and treatment is the key to any illness, including migraines. Migraines are a terrible affliction, just as clusters are. I am not saying one is worse than the other. Haven't decided that one yet. But, if I can help the misguided people who come to this board with migraines, I will. However, being rude and obnoxious to those who apparently are ignorant about their illness will not help. Anthony seems to be a bit more rational and wanting information of late. Perhaps not as logical and sensible as we are used to, but even I am willing to try to help him see the difference. Even I am willing to do that after his personal attacks and wonder cure. If I can get him, and others, to see the difference and to be able to say "I think I have ___?____ from what you said", then I have done my job. I hope because I suffer from both migraines and clusters, people from the board don't look at me saying I am invading their space. I have shared much of my personal health history on the board. Just below Donald asked me give a history of epilepsy, which I suffer from also. I gave my feelings on a recent post regarding the connection between clusters and "internal seizures". As one who suffers, I feel I can give MY position on this. However, if someone is going to tell me this board is just for cluster sufferers and that information, than maybe I am in the wrong place. As many know, I feel this board and OUCH is for education, education, education. As a teacher, I have to educate my students in reading, writing and "rithmetic". No one told me in college that I would have to "teach" kids about social issues, how to behave in the cafeteria, why taking my personal items without asking is wrong, that arguing and fighting in the halls or classroom is inappropriate, that how you talk helps define who you are, etc., etc., etc. But, it is all education in the eyes of the administration, the parents, and yes, eventually the kids. Everything we say and do on this board is education. Regardless of who it is for.
Let me know, everyone, if you feel that this way of thinking is wrong. If it is, than I will disappear. If you do not want me sharing my knowledge, if you do not think I should be helping those who may not have clusters, than I will put my efforts somewhere else.
Cathy