Posted by Elaine (24.88.1.67) on January 14, 2000 at 07:17:55:
Before I found this site I hurt for over 19 years with clusters. I was ashamed, scared, and wore out form the fight! I held a job and got by! I went to doctor after doctor hoping something had been found to fight the demon. Painkillers that did not work were all they would give me. I spent all those years on the floor rocking back and forth, drugged up from the painkillers that didn’t work, always fearing the worst. I would get tired of the drug feeling and try to fight them with nothing but ice. I would treat the symptoms, sinus medication for the stopped up nose, eye drops, orajel for the pain in my gums and teeth, all kinds of headache medication. If it was there I took it. God the tears could fill an ocean.
Then I found this site, read the board, talked to people on the phone and in person who had clusters. I now know more and fight in a different way to control my cluster and deal with them better. I am no longer ashamed or scared of the clusters! I use to think I was alone and the only one with this pain and that made me feel crazy. I have learned how to tell people who do not have these what they are and if they understand great if they don’t that is OK too. That is their problem not mine. I have found the medication that has helped me from this site. I took a list of drugs to the doctor and was able to get the right ones for me. I still fall into my old habits of siting on the floor and rocking, but now I try other things like walking, ice in the right spot, and keeping my mind off the pain. I don’t cry as much as I use to, pain level of 8 and up the tears still come, but I am still working on it. I have learned how to use imitrex make three shots out of one so I can beat three clusters instead of one. I read every post bad or good and savior as much information as I can. I think I have read every entry in the guest book, and all the information DJ has on the side buttons as well as his links he gave us. It has made a big difference in the way I fight them and my life. I no longer fear them I know they won’t kill me, and they will only destroy my life if I let them. I have made some wonderful friends here as well! This site has done more for me in fighting cluster! This is why I come here everyday and post and read. I love the people here, the advice! If just one of my post helps someone or makes them smile or helps them know I care then I feel I have given something back. Thanks DJ and all.