My Epileptologist Thinks I’m Having Non-epileptic Seizures
I got diagnosed with epilepsy when I was 13 and a family member who was visiting shared a room with me and found me having a grand mal seizure on the floor. I’ve had extensive imaging over the years and long-term EEG studies. I have a meningioma and the EEG studies have never picked up an episode despite anything done to provoke a seizure.
My Epileptologist brought up that he thinks that I could be having non-epileptic seizures. I have had the grand mal between 2am and 6am in the morning with one exception that happened during daylight. I struggle with nightmares and I was wondering if it could be related to the seizures but at the same time I’m feeling heavily discouraged about being told my seizures are non-epileptic. I can’t drive, I struggle with episodes of feeling out of body, and I’m currently being tested for MS.
At one of my recent EEGs a doctor asked if anyone had actually witnessed the grand mal episodes (duh, they have) and I was so angry because it feels like I’m constantly getting nowhere with this and it’s ruined my life.
Has anyone dealt with this? I’m 25 years old and feeling frustrated. I don’t drink or smoke, I take care of myself too and these grand mal episodes rarely happen but the out of body experiences are the worst.