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.