Posted by Jill Koenig (64.12.103.179) on January 28, 2001 at 22:14:18:
Hello, I am 37 years old. I have just bought my firat computer. And I have for the first time in my life have read things from some people who have the same thing as I do. I was happy at first, but then I was sad I have never heard anybody describe my life before.For so many years, I thought nobody realy knew what I ment when I said I have a headach. Everybody would always say yea I know what you mean I get bad ones to. Then I would say no I get clusters and they are not realy headachs I would say I don't know why the doctors call them that it is not right. I call them brain spasms. Because that is what they feel like.I have had them for about 15 years. The doctors all said I was special. Because I am a text book case. But let me tell you special I am not. My brain spasms last about 2-3 months. It is every bit of the word HELL. The people that are close to me say they don't know how I do it. To tell you the truth I don't know how I do it either. Like I said at first I was so hppy to hear from somebody that was like me. But then I wanted to cry. I have had this for so long that I would hate anybody to have to go through what I go through. I have a question to anybody that might know the answer. What is in our head that can make somebody hurt so bad to where a happy person would want to do themselves in? I have askes this question many of times and I get, I would be a very rich man if I knew the answer. I will tell you a little bit about myself I am a mother of 2, oldest is a girl then I have my son.I am sorry I don,t know your key works yet. I don't know how I took care of my children when they were young. I guess you just do what you have to. I always said I would give birth everyday if the doctors would say I would not cluster any more. And I had natural child birth with mine. To get back to the clusters I am very lucky. For years now I have made it through them there are many who gave up. I feel for them because I know how hard it is. Mine now have gotten so bad. That when I am having them that I have
to do so much medication that I have to be put in the hospital. My stays run, in a week and out a week. It is a whole lot easier on my family and friends to do it that way beacuse I can't be left alone because I get realy scared. I can't keep up with when I took my last shot and I will over do some times just to make it stop. When I first started going to the hospital the doctors would take me off the Imatrex to give my body a rest. But they would order me a pain shot every 4 hours. That only happened once I told them you will give me a pain shot when ever I ask for one. Can you believe that, that is what they do. I tell everybody don't call me I will call you. Whatever you do don't wake me so that means don't even come and see me. I say that because if I am asleep then I must of just had a brain spasm or I'm getting ready to, so I need all the little bit of sleep I can get. Somebody said something I couldn't believe that most people don't throw up with clusters. I puke my brains out. Mine run on my right side but they will switch at the end to the left for about 4-5 days. I get them only once a year now. I used to get them twice a year when I was younger but they didn't last as long. None of the perventive medications work on me. There I go again, one of those special ones. I am sorry again for all of ya'll who suffer with this. It realy is a hell of it's own. I could go on about this for days because this is my life. So I will see if I send this right before I go on. Hang In There Gigi