Posted by Bobbie (204.244.115.132) on June 30, 1999 at 12:37:30:
Greetings Everyone:
I have had cluster headaches since 1986, and found this board last August as my last cycle was on the way out. I have been reading the board almost daily, and while I have replied to a few messages, I have never posted one of my own until now.
One reason I had not posted was a feeling of guilt. Since my first experience with clusters at the age of 41, I have only had two more cycles. There were 8 years between the first and second, and 4 years between the second and third. I am expecting that the 4th cycle will be sometime next spring or summer if the decreasing interval continues. The pain, as is all of yours, is absolutely excrutiating! The first cluster I had, I left work mid-afternoon, (the third day at a new job) and as I was driving home, I had the overwhelming sensation that my eye was going to explode and I was going to cause a terrible accident on the overpass. Of course, that didn't happen and I arrived home intact, albeit somewhat strung out with the thoughts of brain tumours etc. That session only lasted about six weeks. I was very fortunate in that my doctor referred me to a neuro immdiately, and after the obligatory CAT Scan, diagnosed the clusters right away. However, they couldn't find anything to ease the pain. The second session lasted about four months, the third session about two months - and never any relief from the pain! When the next cycle does start, I have lots of ideas to try from reading the board. However, the guilt feelings started when I realized that so many more people suffer so much more than I do. While I may have four or five in a day, I may miss a day or two before the next onslaught. I don't know if I could endure having this "demon" appear much more often than he already does.
I have noticed that many of the people who were posting last August are not posting anymore; there were quite a few regulars then as there are now. I think Jackie was one of them, but there were two Jackies at one point so who knows? Most seem to have disappeared. Why? Have they been intimidated by some of the postings, or has their cycle disappeared and they are in remission, and they will reappear when the headaches make their comeback.
I am concerned that people are dropping off the board, but then perhaps, they are like me; just reading, absorbing, reacting and not posting. If I had been a reader who had just found this site over the past few weeks, I don't know if I would have found the courage to post. Some of the hostility is really quite intimidating. Because I have been reading for eleven months, I feel like I really know most of you "old-timers" and I know that no one would intentionally hurt one another. We mustn't forget that we are all here for one reason: we all have cluster headaches and intolerable pain. Yes, we get cranky, and yes, we strike out when we are in pain. Remember what Thumper said in "Bambi" - if you can't say anything nice, don't say anything at all. I'm sure everyone of us feels for the others, as we really are one big family.
I was glad to see a few posts from Margi this a.m. I was beginning to get concerned - I just love your messages Margi - they are always positive and uplifting. Your water, water, water brings to mind a picture of Mike with his feet planted in the ground, with you standing over him with a watering can, whispering words of love and comfort and support. Glad to see you back - I for one missed your exuberance!
I love the fact that so many of you have such a wonderful sense of humour - lcbob's 2000 headlines, Nancy's SAT humour, etc. How many of you know the story of Patch Adams and how his sense of humour had such a great impact on the healing of his patients.
I love the fact that newcomers are always welcomed unconditionally to the family; that they are directed to helpful posts, and/or their questions are answered and not just dismissed out of hand.
I love the fact that everyone here cares so much about each other - we worry when someone disappears from the board for a day or two; we hurt for each other when someone receives a nasty e-mail or post; we suffer each other's pain because we have felt this pain ourselves; we can commiserate with one another when something goes awry in our personal lives, and we can celebrate with each other when one of us finds relief, or remission, or just has a good day.
I love the idea of OUCH, and I think the convention is a wonderful idea. I will certainly be there if at all possible and hopefully not in cycle. I have already contacted Margi and Barbara D. to offer my help in any possible way with OUCH, and Elaine, if there is anything I can do from northern BC to help with the convention, just e-mail me. I'd be glad to help!
Happy Retirement Day, Kip. My husband is also retiring today, and I'm sure you feel much the same way he does - glad to be going, and yet sad that a chapter of your life is closing.
I guess I have rambled on enough - it seems like once I started, it just kept spilling out. I just want to encourage everyone to have positive thoughts, and if any negative posts appear on the board, just ignore them. We all know what cluster headaches are about, and we all know what a great place this board is, and what loving family we have here. Take care everyone. See you in 2000.
Cheers,
Bobbie