@jakedduck1 Jake...had the idiot doctor NOT taken me off my Dilantin, it is likely I would not have had a seizure in 1986. By the way, when I "came to" following the seizure, I was in a basket looking at the bottom of a US Coast Guard helicopter, trap door open, who came out 30 miles into the ocean and plucked me off a boat. Never forget that one!! I knew what happened.
Each EEG were normal all done at teaching hospitals so no reason or cause for seizures. I did not have sub-clinical seizures at all. We were both lucky to have a passenger in the car. I am sorry to hear about your situation in that lack of medication would likely trigger physical symptoms. No doubt, we will be on meds for life. I often wonder if the level of Dilantin can be the cause of the peripheral neuropathy. My neurologist says no. But....?? I agree, tests are mandatory before any changes in meds especially in discontinuing. And, like you, at times, I too wonder why I'm still here. I look at my kids and grandkids and know why. It is meant to be.
Stay well Jake.
Ed