Epilepsy - what type of seizures are these?

[NorthernGirl1981]

I’m going to try and keep it really brief and then can expand on anything if need be.

Had my first tonic clonic seizure when I was 16 and continued to have one about every 4 months until I was 24. Epilepsy was diagnosed very early on and I was on medication.

I then went seizure free from 2006 - 2019 (so thirteen years). I was on medication for the duration of this time.

In 2019 I had a tonic clonic seizure after 8 hours of acting quite oddly and feeling in a dream like state. The same thing happened about a year later. I don’t really have any memories of the hours that led up to the tonic clonic seizure, I just know I was behaving very abnormally based on witness reports of what I was saying and doing.

I then went seizure free for 2.5 years before I had an episode of non-convulsive status epilepticus which lasted over 36 hours. I was in hospital for the duration of this time. I have absolutely no memory of the first 24 hours, the whole period is a complete black-out to me, even though I was walking around and talking to people. I wasn’t really making any sense, and I was slow and confused, but I was responding to people. Like I said, I have no memory of it though. After those first 24 hours I started to become aware of where I was but I was still acting confused and erratic and manic for another 12 hours (although I was able to have normal conversations with people).

Since then I have had another 2 episodes like this - the first lasting 8 hours and the second lasting 12 hours. As before, I have absolutely no memory of either event, only very brief seconds of awareness every couple of hours or so, but again I was walking around the house and responding to people, although I was apparently very confused, quite blank and talking nonsense.

My Neurologist thinks these events are me having back to back absence seizures, but my epilepsy nurses do not agree and say they are focal seizures. It’s not easy when conflicting opinions are being given.

They certainly don’t sound like absence seizures to me as I black out for HOURS, even though I’m awake and responsive to others, whereas absences are more about freezing for 20-30 seconds, not responding to anything or anyone around you, and then being back to normal afterwards.

Had anyone else experienced something similar?

My dad is like this before his tonic clonic seizures. Just very vague and can't talk. Goes in for hours. One of my friends who was a consultant epilepsy specialist said it could be non convulsive status. I think dad's consultant mentioned a prolonged focal episode before it spread. I really pushed them to explain it as I'm a doctor myself and have done quite a bit of neurology but never seemed to get a definitive answer. The non convulsive status my friend mentioned seemed the best explanation. It's awful. My dad was 92 when he first developed epilepsy. Lives alone and is 2.5 hours from me. He's only had 3 seizures to my knowledge but they really wipe him out for days and this one has taken several weeks to recover from. The medication makes him so tired.