My epilepsy journey has been a long and confusing one! In summary, it’s been an ongoing debate since I was 6 years old (I’m now in my late 20s) re whether I have focal to bilateral tonic clonic seizures or something else (convulsions after syncope, dissociative seizures etc). I feel as though I’ve had a million EEGs in my life, all of which have been normal (hence the debate re aetiology). My seizures are infrequent and as there was never certainly re diagnosis and my predisposition to anxiety, I chose not to take AEDs before now.
I am lucky only to have a seizure approx once a year. They’ve always presented similar to tonic-clonic (with some atypical features) and I often get something similar to a short aura and prolonged post-ictal confusion, headache, exhaustion after. Following a couple of bad ones recently causing terrible injury, my neurologist and I have decided now is the time to give medication a try (Keppra 1000mg/day) and assume it’s epilepsy.
I’m two weeks in and feel WEIRD. I’ve had none of the expected stuff (eg Keppra rage), but have noticed that I am really twitchy (like extreme electric shock type jerks) while totally conscious and alert, and also having really weird and disturbed sleep. I’ve woken up twice in the night feeling my dreaded post-seizure feeling (floaty, confused, terrible headache etc). I’ve also woken up once with the type of “aura” I get before seizures (feeling surreal, wobbly vision, tingling in forearms and face), but weirdly this didn’t lead in to a full tonic-clonic as usual.
I know that a side effect of some AEDs is increased seizures. Is it possible that I am having new types of seizures?? (Eg. myoclonic awake seizures, or some kind of nighttime seizures - neither of which I’ve had before).
I am due to have a check up with my neurologist soon, but I wondered if anyone else had a similar experience / thought process? Half of me just thinks I could be imagining it / overthinking everything / going mad!!