Why have my seizures gotten worse?

RE: medications I have been on

Submitted by poetrywriter2004 on Mon, 2004-01-26 - 01:16

Um, I did miss one thing when I was telling you about the Depakote ER. A couple of weeks or maybe just a week before I made an appointment on December 30 for the 31st to see my neurologist. I had to call him because I was having more seizures. He told me to go up to 2000mg. I remember now. It was a week before, maybe slightly longer. A couple of days after I was put on 2000mg, I started retaining fluids really, really bad. I was retaining fluids in my feet and ankles when I was on 1500mg, and I had to be given Lasix because it was putting pressure on the the major tendon in my foot. I know what it is, I just don't know how to spell it. Where is a dictionary when you need one? Hehe. The pain in my feet was excruciating. I also had severe back pain because of that also. But when I was bumped up to 2000mg, it got a lot worse. I retained fluids everywhere. I gained 20 pound in a few days from fluids alone. I felt horrible because I was so bloated and swollen everywhere. It turns out that it was caused by a rare and serious side affect of the Depakote. It is a Kidney abnormality. And then comes the appointment with my neurologist on December 31st. I told him about the side affects that I had been having, and then about the seizures that I had the 29th and the 30th. He at first wanted to increase the Depakote to 2500mg. So I again told him about the severe side affects that I had been having. Mainly the severe retention of fluids. He then said that it was the Depakote that was causing that. He told me to start reducing the Depakote immediately. And he put me on the medication called Trileptol. I lost the 20 pounds that I gained from the excess fluids. I lost that within the past couple of weeks. I was started out at 150mg of Trileptal and was supposed to increase it by 150 mg per week until I was at full dose of 1200mg. But something happened on January 1st. I had a break through seizure my mom told me. She also told me that it lasted for 10 minutes. I was unable to walk under my own power for a half hour or so after the seizure. I called the neurologist on call that same night, and my mom told him about what had happened. He then talked to me to tell me what I should do. He at first told me to go back up to 2000mg of Depakote. I told him about the severe side affects, and that my own neurologist had told me to reduce it immediately. So the neurologist on call that night told me to go up to 300mg of Trileptal, and increase the Trileptal by 300mg each week instead of just 150mg per week. I got up to full dose and have been completely off of Depakote since January 21st. I feel a lot better in the respect that I am no longer extremely bloated. But all the other problems that I mentioned are still there. I can't go on living like this. Only being able to work at certain times, only being able to do certain things at work. The truth is, I can't do much of anything. I can't even take walks by myself, which is something that I absolutely love to do. That is what I did to have some time just for me. I wasn't ever evaluated to see if I would be a candidate for surgery years ago because my seizures were considered to be under control. But in early 1999 is when my seizures slowly started to increase in frequency. And this is where I am at now. I also know that the prognosis is good for the removal of a malformation in the Occipital Lobe. I looked it up on this sight. But if anyone has any more information on that, or can tell me where I can find out more information on that, please let me know. I would greatly appreciate it. Thanks again.