u/False_Obligation_420

I’m hoping someone here might have some insight because I feel like I’m going in circles with doctors.
My history:
2014 Back pain with right-sided sciatica. I also have spina bifida occulta.

2018 Got sick and developed chronic headaches afterward. Workup for tumors/etc. was negative and I was diagnosed with migraines.

2022 Diagnosed bipolar. This doesn’t really fit but was the best answer at the time.

2023 Developed severe GI problems and eventually couldn't keep food down. GI ordered a head CT just to be safe.

2024 CT showed Chiari malformation. I was having severe headaches, presumed gastroparesis, fine motor issues and occasional balance problems.

2025 Had Chiari decompression.

After surgery Developed right-sided weakness and seizure-like episodes that feel very temporal-lobe-like.

2026 Everything has become more frequent/debilitating. I've had 3 ER visits in 6 months and prolonged EEGs at two Level 4 epilepsy centers.

My episodes involve things like intense deja vue, a roller coaster feeling in my stomach, staring, and swallowing repetitively. I am aware through it all but cannot respond.

My 72-hour EEG didn't capture epileptiforms despite having an episode during it, but it did show left temporal focal slowing and quasi-rhythmic spikes. I've also had multiple regular brain MRIs and CT scans.

The part that really concerns me is that I'm not just having episodes, I feel like I'm progressively losing cognitive and physical abilities. My memory, motor skills, strength and sensory tolerance have gotten worse. I also have severe daily headaches, muscle tightness and weakness, extreme emotional outbursts although none of this FEELS psychiatric, and a deep internal restlessness that is extremely debilitating and doesn't improve with exercise.

Maybe not all the history I included is relevant. The back pain especially could be from my sports history. I don’t know. I just wanted to provide everything I could about my history. I am in so much pain and struggling.

My epileptologist is currently leaning toward FND/PNES because of the lack of definitive data and also partly due to my bipolar diagnosis. I know FND is real, but I'm struggling with this explanation because it feels like it’s being used as a “we don’t know what as wrong with you” diagnosis rather than actually evaluating for that or any other possibilities.

I'm exhausted and at a loss and I am losing hope every day. I desperately need someone to care and help. Any ideas or suggestions are appreciated.

friends with temporal lobe focal seizures, did you have a scalp negative eeg? i just got out of 4 days in the EMU and no answers. the frustrating part is there was evidence of focal slowing in my left temporal lobe on the eeg (i understand that slowing can be normal) but my seizures looking like textbook TLE focals and i know TLE is easy to miss on a scalp eeg. was anyone else in the same boat? dr is saying FND now and it just doesn’t seem right. i also started keppra prior to the EMU stay and it helps tremendously and i feel like that wouldn’t be the case if it truly was FND.

are there any adult sports groups in gr or surrounding cities that aren’t ridiculously expensive? i’m not looking to play super competitively, im thinking more of just a group of people getting together, bringing your own equipment, and playing softball, kickball, pickle ball, etc together. i’m newish to the area so i dont have enough people to start my own so if theres one available i would love to join. preferably softball/wiffleball but im open to other sports!

hey everyone,
after an er visit i was started on keppra and just have some questions. i have my 5 day emu stay coming up but they wanted to attempt meds because of how much my life is being impacted. obviously i have seen the horror stories online so i went into it very nervous. within the first few days i started feeling GREAT! i feel like the static in my brain has quieted down, i have been able to go into the world without the overstimulation triggering seizures, i wasn’t afraid to come to work today. is this a honeymoon phase or am i just one of the lucky ones? my side effects right now are exhaustion (but nothing i haven’t dealt with before) and a little dizziness. it’s not impacting my daily life i just have been running into things and having to brace myself every once in a while when i first stand up. i obviously don’t want to convince myself it’s not going to last, but i also don’t want to live in delusion. whatcha think?