Posted by Kathy on August 23, 1998 at 00:18:46:
Please help! My husband has been suffering with clusters for 12+ years. He is at the end of his rope and tonite I had to wrestle a gun away from him to keep him from killing himself during a headache. He has begged me before not to ask him to live anymore because he says it's selfish of me to ask him to live with such pain and when the quality of his life is zero because he never knows when he's going to get a CH. He says he is afraid to sleep. He is only like this when he has a headache, but when he has a headache he means it. He has seen tons of doctors. He is on lithium, verapamil and depakote. He has tried Imitrex, it didn't work for him. Oxygen didn't help him before, but we're going to try it again. Dr. just gave him some nasal spray called DHE or DEH I don't know, but it didn't work either. The only thing that works is prednisone and she won't hardly give that to him unless I beg, and then it's no refills. He has an appointment in two days at a sleep clinic because I think he has sleep apnea and I read someone's post that said they got some results from this. The bottom line is that I made a kind of deal with the devil tonite. He told me he was finished with all of it. No more doctors, no more experiments, no more drugs and no more headaches. He said the next one would be his last. He said he had given up, and he doesn't believe that there is a cure and that he will have to live this way for the rest of his life and he isn't willing to live this way anymore. I have to believe that there is some hope for him out there somewhere. I just have to find it. I have read tons of books over the years, researched as much as I could. He is also taking melatonin at night because I read somewhere that this may be helpful. But the deal I made was that if he would continue with the treatments and try anything I wanted him to, he would only do it until the end of this year. Then he will not do it any longer, unless we have found him something that gives him relief. He says he could even deal with it if he had something to help abort the headaches when he gets them. His Dr. has been very reluctant to give any abortives, but I laid it on the line for her last week and she gave him the DHE. I asked her about lidocaine nasal spray, but she didn't want to give it to him. Does anyone have any experience with this? I am willing to do anything, take him anywhere. I don't care what I have to do, if there is a possibility of relief somewhere I will do it. Please help me. He is a wonderful person and this is ruining his life. It is tearing me apart to have to watch him suffer and not be able to help. Anything you can recommend will be appreciated. God Bless all of you who have this illness. To call it a headache does not do it justice. My heart goes out to each and every one of you. Thanks.
Kathy