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Posted by Paula ( on March 28, 2001 at 00:23:36:

In Reply to: Life with clusters, why I back OUCH! posted by Elaine on March 27, 2001 at 09:05:30:

In many ways. To have had an easier life and to have found this board. My clusters started in high school. VERY short. 5 mins maybe and for a month. I remember waking up and getting on my hands and knees and rocking back and forth. I got glasses. They went away. But they came back every year. Lasting just a bit longer. I went to doctors and they did say I had CH. But they would always give me sansert (because it should work)this was around 1975. There was a couple of other meds that I don't recall. They didn't work. Finnally around 1980 I went to the univercity of Washington. But everytime I sarted a new drug my cluster would end and I didn't know if it was the med or the end of the cluster till the next time when I would try the med again at the begining of the cycle and it didn't work. It took a month to get an appointment. I remember going to the univercity and getting one afterwards in a store or on the way home and wishing I was still at the doctors. I could not go alone because I couldn't drive if I got one. My husband at the time would say it was my fault. If I would change this or do that they would go away. I tried so hard to do as he said but they would just come back and he again would tell me it was my fault. Of course he always said EVERTHING was my fault and I was stupid enough to beleave him. After 5 years and a divorce I had to change insurance companys and start all over again with the doctors. After 3 or 4 I found a GP who would listen and he is the one who a year later got me O2 after my son was born. That was my worse cluster to that date. Brought on by having my son. I made alot of ER runs for years when the O2 would not work. My sons father got tired of taking me and could not live with my being in pain. You know they can't be THAT bad. I had ER nurse till me to calm down I was making them worse. You cannot be still with these things. They did not understand. It often took more than one shot of demeral to take it away. My parents said I was going to be a drug addict. I spent 2 years alone with my son in a small apartment. He at 5 had to try to fix his own breakfast and would watch TV quitely when I was in cycle. He was such a good boy. I had boyfreinds say call me when you get better! The O2 only helps at the begining of my cycles and each cycle gets worse and longer and more painful then the one before. In 1993 I met and married the most wonderful man. In 1994 my daughter was born. A very bad cycle came two weeks later. I sat down with the nuroligest my wonderful GP had refered me to and we went through a book that had cluster meds in it. I had tried them all (let me tell you the list is not very long and there are many more to try as I have found out right here on this board). Now we are going to try a combo. Verapimel and lithuim. It seems to have worked! My husband and I went to a car swap meet about 5 hours away from home for the weekend. The fumes were to much and I had a 10 right in the middl eof the swap meet and I had not brought my O2. The fire department came. I was screaming so hard they cut a hole in the fence to get to me. The O2 helped and I was transported to the hospital where I got demeral and contacted my O2 company and they brought me out a tank. I stayed in the motor home and sucked on O2 that weekend. Then they left. I guess it was one last bang and the combo of verap and lithium lasted for 4 wonderful years. I thought they are gone. I will never get them again! BUT, in the fall of 1998 one morning early at work I had a ten. On the floor banging my head, getting up pacing the hall. I could not beleave they were back. Again I didn't have my O2 with me ( never again will I go anywhere without it). The manager called 911 and I was off to the hospital. That cycle lasted 3 months. I began again with a new nuro since I had changed insurance companys. Guess what! He has knowledge and listens! I am still with him at this time. We did not find a preventative. As all doctors do he put me on pred. It never has worked for me but what the hell. I made 6 ER visits in Nov of 1998. Demeral would not touch it and they had to use dilodid. I got lucky and 5 out of six times I got the same Doc in the ER. He would bring me right in and start the IV with no questions. I ended up in the hospital on an Iv drip. I just had to have a break from the pain. It seemed to have ended my cycle. Then in April last year I started to get shadows. ( I ignored them) May I missed a few days of work and it took till June to get into the nuro.He sarted me on prednisone (why?) and topamax. He upped the topamax rapidly because they were coming hard. By July I was in the hospital again. The narcotic IV drip worked but who wants to stay in the hospital? We tried verp with the topamax. I was out of work most of June, July, Aug and Sept. Everytime he would up the topamax the CH pain would double(I didn't think it could but it did) and I would get them every 2 hours day and night. Finnaly around Aug I said no more nd he tapered me off. My GP gave me deragesic patches to keep me from going back into the hospital. I don't want to see any kind of drug for a long time. I am so tired of taking things that just get me by, I want a preventative that works! Thanks to this board I have many to try. I was one of the newbies who thought I had tried everything. But I was wrong there are others to try. by Sept they were shadows and gone by the end of the month. I found OUCH June of last year and have been spending ALOT of time here. Asking for help when I needed it and now I am here to help those that are in need. I am lucky to have my kids, my husband, my job and at this time no pain. And I am so lucky to have found you all. Thank You from the bottom of my heart. Love Paula

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