Originally Posted by PAYNE1

Hi, "frustrated"! I looked up "idiopathic" and discovered that it means "having no known cause." So, I understand that you're frustrated in that you read that dilantin can be a cause of it. Did you mention your finding to the doctor?

I am particularly interested in the long-term effects of some of these drugs on the nervous system. I am bipolar, but doctors give us a lot of drugs for epilepsy to deal with that. I was having trouble with walking, and my primary care doctor thought it might be due to my taking a high dosage of Lamictal over the years, so she took me off of that. I have also been on lots of other drugs--Dilantin, though, hasn't been one of them. Depakote was a big one.

I frankly don't think doctors want to acknowledge that these powerful drugs can damage our nervous systems. We know about tardive dyskinesia, which can be caused by anti-psychotic drugs. But I don't know how much research has been done on drugs to prevent epileptic seizures. But I can't help believing that they take a toll on our nerves.

In fact, I've been worried about staying on some of these drugs. I am now on Trileptal, due to facial pain. But I'm not on any anti-seizure drugs. I was having facial twitching.....Please let me know if you find out anything else.

Meanwhile, hang in there. I guess, as usual, the doctors have to experiment on us to see what drugs work the best for us.