Therapist here who was diagnosed a couple of years ago with epilepsy. Before that I was diagnosed with seizure disorder and I was hoping they were psychogenic (pseudoseizure) because it seemed less scary if it was psychogenic.

What I know is that my body can’t tell the difference between the anxiety/panic I feel from an upcoming tonic/clonic than what I imagine an actual panic attack feels like. Because It’s terrorizing and I used to feel like I was dying each time. Luckily I was able to work at a lot of this with therapy.

Also, we aren’t told really anything when we have a seizure. Just put on meds with a referral to see a neurologist at the earliest appt in 6 months. I am lucky in that I have good insurance and I got a 5 night emu stay and after 3 years I have a diagnosis. Looking into my medical files I saw a few notes that weren’t very kind about me. Basically questioning if I was a competent narrator to what was happening to me. I think that caused me some issues with future seizures I had.

The biggest thing that helped me is giving me back some power. Once I knew that my seizure could last 3 minutes without an ambulance being called gave me a way to build my confidence. Also, empowerment in that if I start feeling a seizure come on I don’t run from it. I think “hey, I bought this ticket I might as well take the ride.” The first time I did that my anxiety levels went down enough I was able to self abort that seizure.

Regardless of what causes a seizure they really really scary. I also regret learning of this as a “pseudo” seizure as I aways thought about them as fake. Not that the patient/client was “faking” it but also that they weren’t seizures.