I’d say true PNES is exceptionally rare, at least in my patient population. I can’t remember the last time I had a patient with a non-epileptic episode that wasn’t clearly demonstrating secondary gain from their episode which is typically familial or relationship sympathy. These patients seem to ALWAYS have an aggressively overbearing family member or spouse that refuses to accept that these are not true seizures. I typically advise the nursing staff to not allow any family members back with the non-epileptic episode patients, or kick them out if they become disruptive. Significantly reduces the rate of work disruption from the family member screaming for me to come in the room every time the patient has an “episode”. Usually the patient magically stops having their “nonstop seizure” when they no longer have their intended audience present.
My more controversial opinion, however, is regarding the teaching that “30% of patients with PNES have true epilepsy”. I think that claim is mostly BS. I’ve yet to see a patient with non-epileptic episodes have a documented positive EEG during prior hospitalizations or noted to have had one on outpatient EEGs. Literally not a single one of the hundreds I’ve seen in my career, and I always chart dive on these patients. I know it happens, and I’m not claiming none of them have true epilepsy as my patient population is probably skewed, but it’s certainly not 30%.
More commonly these patients get put on anticonvulsants by an ER doc or a neurologist after one of their “episodes” “just in case”. Then everyone that sees them afterward just keeps documenting “epilepsy” on their history with their script for Keppra as confirmation of the diagnosis, and so anticonvulsant keeps getting refilled and diagnosis keeps getting documented on their chart. Then someone does a retrospective chart review study using ICD coding and finds that “30% of PNES patients also have true epilepsy” and the myth gets propagated more.
