I can't understand why, if you use as prescribed, and it helps your seizures, neurologists don't allow you to take it.
No doctor can take any type of action against you for asking questions, especially when it comes to your health!

Linda don't blame the epileptologist, blame insurance and in your case the government. Insurance give all neurologists epileptologists and other specialist too I am sure. You start dealing with specialized conditions the insurance companies don't know what the doctors are saying so they decline it. I was denied long term care because of my NEUROFIBROMATOSIS big scary word; but less of concern than epilepsy. Doctor doing the review of my application was older than 40 so he did not know what NEUROFIBROMATOSIS is. people making decisions at insurance companies are for most part, "chit pools" ass hole of a chicken as my grandfather would say. He is more forgiving than I am.

LindaConcerned-

I can agree to that. I saw an epileptologist several years ago after trying a few neurologists and he was the most condescending person i've ever met with and put me on the worst medication of my like (ethosuximide). I am going to talk with the local epilepsy foundation who isn't vested in me as a patient and might give me honest discourse.

Hi
I have the same problem. Years ago, I was on dilantin and mysoline for about 4 years & I was seizure free for 2 years. The reason they came back was because my financial situation was not good & I was too proud to ask anyone for money, stupid stupid stupid. After my seizures came back, I had moved and was not able to be in contact with my neurologist, the best I ever had. The new neurologists don't believe in mysoline at all, they say there are new medications which help my condition.They started me with all kind new medications like Tegretol, Sabril, Topamax (which had no good effect on me). These medications didn't help me at all & I had more seizures. So I asked them to bring me back to mysoline & dilantin. No, they wouldn't do it. I kept telling them that this combination, worked best for me. So, I went to a new neurologist (he is really good) and he gave me Lamicatl & Keppra. My seizures have been reduced bit not gone. I keep telling my new neurologist to put me back on mysoline & dilantin because I know my body and know what works for me. But doesn't do that. He is telling me he wants to add vimpat to my medications but to be honest I am very scared. I wish the neurologists would listen more to the patients because they can't understand what we are experiencing. I know we are not doctors but we know our bodies better than them.

as randy says "find an epileptologist" try a teaching hospital. your state college is good place to start.
your doctors won't liaten to you because they are scared for you to know too much.