Posted 6/22/2006 6:32 PM (GMT 0)
Hi everyone,
I'm a new member, so please forgive me if all of these medicines and/or symptoms have been discussed here before.
I've had grand mal seizures since 1999, and I was on Dilantin since that first seizure. I had two other seizures between then and 2006, and both of them occurred almost exactly six weeks before I discovered I was pregnant. I was fairly good at keeping my level under control via blood tests when I had health insurance, but once I lost the insurance I relied solely on how the medicine made me feel. I was pretty good at keeping it under control, but I experienced a lot of side effects, especially the growth *and* deterioration of my gums (I'd leave bloody bite marks in ripe bananas, and brushing my teeth was something I hated to do in front of anyone else, including my husband). Anyway, I discussed this and my concern over liver damage with my dr. and over the next month he put me on several different medications (Klonopin, Topamax, Depakote, Tegretol and several others I can't remember). I'd tell him when I felt shaky or close to a seizure and he'd call in a new prescription. We found out that Depakote didn't work when I had my first seizure in more than 2 years at my office. My boss called an ambulance, and I woke up to the EMTs asking me all sorts of questions. The ER dr. put me back on Dilantin, and 3 weeks later (at a stronger dose of Dilantin than I'd ever taken) I had 3 seizures in one day; the third was actually waiting in the ER waiting room. This is highly unusual for me. The next day, while my husband drove me to visit my mom 2 states away who was taking care of my children, I had another seizure on the interstate and managed to grab the steering wheel and pull our car partially under a semi-trailer. Then we went off-road in our sedan. I also bit my tongue badly enough to bleed all over the front of my shirt. When we got back to my dr. on monday he put me on 60 mg of phenobarbital in addition to the 600 mg of Dilantin. Consequently, I slept for about a week.
I started the phenobarbital about 2 and a half weeks ago, and my memory is *gone*. I'm more alert now, but I still can't walk down a hallway without leaning on the walls for support. Let me just add here that I'm 25 years old, with no other medical problems. My memory, both short-term and long-term, is a big part of my job (I work at a casting agency with a boss that depends on me to remember everything). As of right now, my dr. has barred me from driving (I expected that) and from working. This is very hard for me and my family, especially in post-katrina New Orleans. There's a huge lack of workers and when I applied for disability, the govt. workers looked at me like I was the scum of the earth. Which doesn't matter so much, but I do want to contribute to my family and also help my employer. Regardless of that, I'm trying to figure out if the phenobarbital could be causing the memory loss - and maybe also this problem I'm having with my stomach. Since I started the pheno., my belly has swollen to the point where I cannot fit into any of my clothes anymore. I've made an appt. for a gastrologist but it's not till July 5th, and my belly swells more every day. I also can't eat more than a couple of bites without feeling like I've eaten a huge steak. And if I take my medicine without eating, I throw up.
I know this is a very long post. I'm sorry for that. But does this sound familiar to anyone else? Please reply when you have time.