Great post, Jaimes. Thanks.
Oh, Tegretol. The morning after I was put on Tegretol, I woke up with a fever and the feeling that my legs were broken. I called my neurologist. He would not come to the phone. He told his secretary to tell me that it was all in my head. That, because I didn't want to take the med, I was imagining a reaction. The next day I was worse. Neuro still won't come to phone. Next day worse yet again but now with stunning rash. Beginning to get angry response from neuro secretary now when call. By end of week, holding head from pain. Covered with very dramatic rash. Temp of 104. Neuro unavailable. Won't take my calls. I called the doctor, who had recommended the neuro and said, "I can't stand the pain any longer. The weekend is coming. I won't get a doctor on the weekend. I need to go off this med." Doctor said, "Meet me at ER of hospital." I did. ER doctors said that I would have been dead before Monday. The blood vessels in my brain were swollen almost to the point of exploding. My system had already begun to shut down. I was hospitalized in intensive care. The neurologist (whose attention I finally had) switched me to Depakene. After several days I was recovered to the point that I was asked to try to get out of bed. I couldn't walk. Ataxic. Depakene reaction. Neuro says, "You may or may not ever walk again. We don't know with ataxia. However, we need to take you off the depakene now. I am afraid that you may react to another med and go into anaphalaxis. Your alternative is to go into status from the withdrawal. The choice is yours. You may die with either decision. If you choose status, I will leave orders that no one but me is allowed to give you the valium iv to bring you out of it, because one out of five people die during this procedure." I chose the withdrawal and status. I go into status during an MRI. I was in status for 8 1/2 hours. How is this possible, when I am in a hospital? Because the neuro had left orders that no one but him was allowed to bring me out of it, and he is UNAVAILABLE. Finally, I regain consciousness and confront the neuro. He tells me that he was at another hospital sewing back together the brain of an epileptic he had begged not to drive. He points his finger and me and says angrily, "And let that be a lesson to you." I know at this point that I am in the Twilight Zone. He tells me that my reaction to the Tegretol was atypical. It did not appear to be a Tegretol reaction. When he leaves the room, the nurse whispers to me that there was a boy two rooms down with the exact same reaction to Tegretol the previous week. The other nurse in the room nods in agreement.
It was years before I got up the nerve to try another med.
This whole topic just makes me crack up - people's responses to seizures. My dad griped at me about not having an ID bracelet, and I was about to leave for church. He said, "Don't set people up to feel stupid. If you have an ID, people will see that and know you have epilepsy, but if you don't, and you fall on the floor in the middle of service, they're going to start trying to cast demons out of you." I was trying really hard not to laugh, b/c I know he's serious about it, but I've actually been at church where I've had just petit mals, and people started praying for me, in that demonic possessed way. I actually thought it was pretty funny, w/ my brain thinking "I know something you don't know, ha ha ha ha ha ha." (say this in a sing-song voice)
The first time I had the VEEG, one of my friends called up, and started talking to me about the seizures being a spiritual battle, and how if I had enough faith, the seizures would go away. I haven't talked to him since. If I had cancer, would you tell me it was my fault b/c I wasn't spiritual enough?
Faith's a personal thing. I know my body, and I know what I believe, and other people can think what they want to think. It doesn't much bother me anymore. It used to, a lot, especially at church, but I know my having seizures isn't about not having faith, or not being Christian enough.
Just a side note, b/c you guys made me laugh.