Posted 6/2/2018 11:36 AM (GMT -6)
Sorry to hear of your dilemma with dilantin and your Doctor.
I'm in the same situation, (with an old school Neorologist, set in his ways)
I've been on dilantin for 39 years.
My Neourologist had me believing that since dilantin has been around for so long, it's side effect are well documented as well as LONG TERM USE effects and that the newer drugs (if I were to change) COULD cause more seizures, more severe and more frequent.
I assumed that everything was going fine as my seizures were under control and I wrote on this board several times that everything was going great but in fact it was destroying my life.
My gait is f----d up,my balance is so bad that I can't walk a straight line without falling, can't look to the side or up at the sky without holding on to something, loss of short term memory, erectile dysfunction, just to name a few.
My "OLD SCHOOL" Neourologist brushed it off as erreversable effects from long term USE of dilantin and although I had mentioned my concerns to him, he told me to live with it.
I had gone to the Hospital for another unrelated issue and they had to draw blood and they discovered that my liver enzymes were 4 times the high level, which they found to be very odd since I didn't drink and my dilantin level was low.
Now I've finally decided to change Doctors, I just hope it's not too late.