Weird neurological symptoms - possible focal aware seizure? Or something else entirely?!

[ForeverDelayedEpiphany]

I have a history of concussions (three), post concussion syndrome, and subsequent iatrogenic injury (a movement disorder called tardive dyskinesia) from an off label antipsychotic prescribed for severe insomnia and anxiety after my first concussion.

Recenrly, I've been getting quite a few episodes of my involuntary eye movements in bed when I'm laying down relaxing trying to sleep (these are called an oculogyric crisis), alongside separate episodes of weird intense anxiety/horrid surges of brief fear and a bit of a feeling of my stomach feeling like it's flipping.

Last night's episode was particularly horrible..I'm trying not to worry about anything too serious as it could just be a bit of an autonomic neurological episode, anxiey., or even a sleep related thing, rather than anything neurological or even epilepsy/seizure related.

I drafted a bit of a long winded note to hand to my GP, given my head injuries and neurological history, but I'm worried I am going to look something like a "worried well" woman!

Has anyone ever had similar? Should I ask my GP for advice?

I'd post my note i drafted here, but it is a big old note haha 😄

Ok, I'm posting the note as it might provide a bit more information/context:

Neurological Symptom Summary – October 2026

Reason for consultation: Recurrent, brief episodes of unusual internal sensations occurring at bedtime, alongside increasingly frequent oculogyric crises.
Relevant medical history
• History of three concussions, beginning around 2015, with persistent post-concussion symptoms following the initial injury.
• No loss of consciousness during the first concussion. Previous brain MRI reported as unremarkable.
• Third concussion in 2025 caused a recurrence of post-concussion symptoms, which subsequently largely settled.
• Established diagnosis of tardive dyskinesia following antipsychotic medication exposure, including recurrent oculogyric crises.
• Oculogyric crises have become increasingly frequent, particularly at bedtime.
• Currently experiencing perimenopausal hormonal fluctuations.
Description of recent episodes
On 15 October 2026, an oculogyric crisis began several minutes after lying down in bed. The crisis resolved completely.
Several minutes later, while still fully awake and conscious, I experienced a sudden, extremely intense and unusual internal sensation.
The sensation involved:
• A rapidly escalating, crescendo-like feeling of internal panic, restlessness and loss of bodily control.
• A profound sensation that the internal disturbance might continue intensifying indefinitely.
• An unusual wave-like or neurological quality, difficult to describe.
• Complete preservation of consciousness and awareness.
• No accompanying observable involuntary movements.
The episode lasted only a few seconds and stopped abruptly, almost as though a switch had been flicked.
Afterwards, I felt shaken, restless and worried, but did not experience confusion.
Similar episodes have occurred previously, exclusively at night while lying in bed and relaxing, rather than while drifting into sleep.
As far as I can recall, these episodes have occurred following oculogyric crises, although the two experiences are distinctly different.
The sensation is also unlike previous panic attacks or akathisia-like restlessness I have experienced.
Possible hormonal association
Menstruation began on 16 October 2026, the day following the most recent episode.
I would like to establish whether hormonal fluctuations could be contributing to these neurological symptoms.
Questions for clinical assessment

1. Could these episodes represent focal aware seizures, including seizures involving autonomic or emotional symptoms?
2. Could they be associated with my existing dystonia or tardive dyskinesia?
3. Could previous concussions or perimenopausal hormonal changes be contributing factors?
4. Would an EEG, updated MRI or specialist neurological assessment be appropriate?
5. Could the increasing frequency of my oculogyric crises indicate a need to review my movement-disorder management?

Main concern: These brief episodes are profoundly uncomfortable, distinctly different from my established neurological symptoms and characterised by an overwhelming sensation of escalating internal loss of control. I would appreciate assessment of their cause and whether further investigation is indicated.

Anyone?! Hopeful bump...🥺😞

What form did your oculogyric crises take when you were on the antipsychotics, how many did you have, how long is it since you were on the antipsychotics,
has anyone been with you to observe the eye movements?

I would ask to have it looked into. I have epilepsy and it started with what you describe but I would also at the same time have these jerks, like if I was holding any it would shoot out of my hands. Then the full on seizures started.
I haven’t had one in years as the tablets work well but what you describe is exactly what I would have.
They’re called auras when it’s epilepsy.

To be honest, I stupidly asked ChatGPT for advice as I had some other strange neurological issues today, feeling very empty headed for a while, that came on suddenly. It went away after about 20 minutes when I started working but ChatGPT said I needed advice from either 111 or even to call 999 as it could be potentially a TIA 😳😬😱

To be honest, that did scare me slightly. I didn't call 111, but ChatGPT also seemed to think it might possibly be focal aware seizure related too 🤔 😬😳

I know it's not great to completely trust AI but now you're both saying I should possibly get checked out, I'm wondering if there's something more going on...

Although having said all of this, I've had so many weird neurological issues and symptoms over the years, i brush them off quite a lot too...😬😱😬

My eyes deviate towards thd ceiling upwards, so they usually stayed sustained in that position.

No medical professional has ever seen one of these episodes happen unfortunately. And the oculogyric crisis is something that always seems to happen when I'm laying in bed trying to relax before sleep...

Not brain zaps? I got these a lot in peri, always when in bed relaxing and ready to sleep. Like a pulse of electricity through the brain. Kind of crescendos like an orgasm but not in a nice way!

It's just eye movements are one of the things that can trigger brain zaps.

No, I've had those separately where my brain felt like it was literally shaking inside my skull. It was horrible 😢

This sudden huge intense wave of fear/rush of horrible sensations felt like a massive wave of pressure as though my body was going into some bizarre out of control sensation. It felt like it was on the left side of my head and body. It was almost indescribable and really horrible 😢