Jeepers! I'm glad I came back here and saw this thread! My NewNeuro doesn't think there's anything wrong with me other than mental, that all my previous doctors were wrong about the seizures (and keeps talking about "if I really had grand mal seizures" even though it was status epilepticus, seizing the entire way to the ER in an ambulance, witnessed by many), and that my reluctance to go off my AEDs is due to anxiety. The fact that my Famdoc wants me to proceed cautuiously doesn't matter; I was lectured, er I mean encouraged, to choose whom I was going to listen to, because too many different doctors are giving me different input and NewNeuro *really* wants to help me.
Anyway, I'm on keppra for the grand mal seizures; lyrica was added later for what doctors had called break through partials (that this doc said aren't seizures, and then challenged me on who I was going to believe). So IF I would be willing to go off a med, I think I'd chose to wean off the lyrica......so therefore I'm REALLY glad I read this! YIKES!
I've been on 75mg 2x/day lyrica for about seven years (on keppra for 9 ys). The weaning off process sounds VERY unpleasant!!! I have sugar balance problems even when "stable" (on a very careful low-carb diet; sugar either causes tachycardia or causes me to crash/sleep; sometimes causing jerking like myoclonus in bed). I am going to have to look into this further. Thank you so much for sharing!