Feeling really rough after a seizure, found this subreddit and feel less alone

So hey. Long time lurker who’s on the medical journey to get diagnosed but I think I’m finally at the end of that winding path.

I’ve been so confused since ultimately every clear scan (EEG or EKG- I can’t remember which) has had providers dismiss me when I say I do have seizures! So many times I’ve had to explain that my EEGs are clear but I still have seizures. They just might not be epileptic! :(

This is actually what brought me to make this post- earlier I had looked at a text message (I think that triggered me.) and just felt my body begin to convulse. I felt very much trapped in my body while it was actively Freaking Out a bunch.

I felt like I couldn’t breathe, my vision blurred and…idk it was scary. Eyes just shut and I felt really nauseous and just Awful. It felt like someone had shocked me, setting off Every Nerve but I couldn’t say anything. My head kept shaking back and forth and I did end up hurting myself during all of this. (I hit my hand and also hurt BOTH my shoulders ow)

This has become a Very Concerning Pattern tbh. I had to leave my one job in childcare since I had a seizure at work (which is why I got my first clear scan)! And before that when I worked as a waitress, I nearly collapsed at work with my body feeling shaky and just all around like I was going to faint. (prompted me to advocate for a second one, everything returned fine then too.) Even outside of working? I’ve had these seizures since I was around 13. But they mainly happened when I lived at home. Moving out I was fine for awhile but after some other some intense life stressors popped up- my seizures started up again.

Feels like my seizures are triggered by anxiety, CPTSD flashbacks or just other situations where I’m so very stressed out. Which tracks given my very rough and unstable childhood.🫠

My PCP definitely brought PNES up as a possibility. My neurologist also didn’t see anything on the brain scans AND MRI I did last month which is definitely confirming things tbh. (Yes I did ANOTHER SCAN AFTER ALL THIS TIME WITHOUT ANY DIFFERENT RESULTS UGH 😭 I swear this sucks).

Idk just- I was so upset earlier and just so Fed Up after this seizure that I ended up going on reddit and stumbling here. Finding this community has me feeling less alone and less upset about this being more than likely what I’m dealing with. Very floored and scared, very tired but also…hopeful. 🫂🩷