Posted by Emily (64.12.105.54) on July 04, 2001 at 02:09:52:
In Reply to: Do most Clusterheads work? posted by Kim on July 04, 2001 at 01:12:26:
I have been reading these messages for almost two years, but rarely post. My husband has been in a continuous CH cycle for the past year and a half. He had to stop working and after about 5 months we were able to get medical disability (from the school where he teaches combined with Soc. Sec.) We were told almost no one gets Soc. Sec. for headaches. The intake person said it's too bad you don't have a record of your headaches. We handed her my husband's daytimer with headaches and medication logged for the past year. He was approved in about 4 months. He also had 6 ER visits and 3 hospitalizations last year. His attempts to keep teaching were futile. He collapsed several times in the classroom when he tried to return. Of course, he loves teaching and hopes to return one day. Ironically, he had clusters on and off for 7 years, but when he was put into a classroom with no ventilation or natural light his CH developed into the chronic form. He moved in with my parents for 6 months so he could go to the Diamond Headache Clinic. He has some improvement, but still has 3-6 daily headaches. Also, he suffers greatly from meds given to him the past several years. He developed kidney fibrosis from Sansert. He had to have a kidney biopsy last year. He's been to the ER with bizarre reactions to Imitrex. (He tolerates it now - max 3 per week, never consequitively.) He also gives himself Toradol injections (max three per week). He also had a very strange reaction to just the combination of Norgesic Forte and Phenergan. It sent him into a seizure-like condition. Unfortunately, the docs gave him more medicine in the ER that I said he could not tolerate. And he ended up on a ventilator! It was when they asked me to bring a copy of the Living Will that I knew I had to get him to the Diamond Headache Clinic. He has now returned home to NM. But due to the ER visit, he still suffers from short term memory loss. He would love to return to work, but that's out of the question for some time. We never give up hope. That's my long answer to why he does not work. But I'm constantly humiliated by my co-workers and other foolish people who can't understand why my husband does not work! So when people ask us when he'll go back to work, we say when his doctors say its OK. People are quick to judge and also to imply that my husband must be lazy. Hardly. He was cited as one of the top 7 teachers in the state by the TV station here just 3 years ago. Strange how his CH has so changed our lives. But we try to keep positive and face it one day at a time. Also, my co-workers don't understand when I come in exhausted. It means the Toradol shot did not work and we will wait 6 hours while he paces or I hold and rock him until we can get another shot in him. Sorry for such a long answer, but we just spent an hour with his doc today to lobby to extend his disability. We'll see. Good luck and blessings to you. Emily