[cw: symptom mention] — does this happen to anyone else?
for context: i’m a 26 year old black woman, an established history of TBI (concussion — 2019) & dysautonomia (POTS — diagnosed summer 2025) who began having unprovoked, sudden onset of seizures beginning in October 2025. after tons of dismissal from my local neurologist + emergency department, i was finally diagnosed with non-epileptic seizures secondary to FND after a hospital stay last month to the date & handed the usual packet with CBT as the primary recommendation. although the hospital i stayed at was worlds more helpful than the one back home, the neurology team there still seemed to defer everything to my primary PCP/psychiatrist.
[cw for symptom discussion & brief description of seizures]: >!i typically have full body seizures resembling tonic clonics, with an overall loss of awareness + unresponsiveness, “ictal noise making” & drooling occasionally, and injuries to my lip and tongue during really bad episodes from biting or hitting myself. i also experience brief lapses in concentration & staring spells — kind of like something taking over my body & overriding everything that i can’t do anything about — and seizures during my sleep. my postictal state can last up to 2 days until i’m able to remain awake & i often lose the ability to speak for hours afterwards. my seizures have never been longer than about a minute & a half, and they often occur in clusters when they’re severe, maybe 20-30 seconds apart.!<
since the beginning of my seizures + diagnosis, i’ve noticed other things such as >!cognitive/memory issues, speech issues including stuttering & word slurring, left sided weakness immediately following a seizure (which was noted in the ED notes but not during my actual admission), severe shoulder pain, and i’m completely reliant on my rollator + mostly bed bound these days as i’m beginning to experience trouble walking and staying upright especially on my left side.!< i recently started 100mg of gabapentin TID for possible seizure control (though i had to tell my psychiatrist that it was for anxiety ), have been in CBT for two weeks with a therapist who has experience in FND, and she’s pushing hard for physical/speech therapy for me.
here’s where i’m starting to worry, though — >!i’m beginning to notice that i’m starting to have what i can only describe as “mini seizures”. while laying down especially, typically my leg or my arm will start shaking & jerking uncontrollably, lasting between 30 seconds to a minute tops. sometimes, this evolves into my body shaking, but just the one side, and i’m often jerking to the side with my head or eyes rocking back & forth sort of. this too can last for up to a minute, but nothing more. the thing is, sometimes i’m “aware” that it’s happening but unable to move, speak, or control my body, but sometimes they occur when i’m asleep as my parents have witnessed them due to seizure alerts on our apple watches.!<
my question is: is this something that’s common for people who have non-epileptic seizures with FND? is this an adverse medication reaction? something i should bring up to a doctor? just to clarify, i’m NOT looking for medical advice or a diagnosis, as i know that only a neuro (who takes me seriously lmao) can give me those answers — but i’m moreso looking to see if maybe this is a shared experience or more details to provide & document for a doctor. thank you!