okay long one I’m sorry. so I was recently in hospital for 2 weeks following an increase in tonic clonic seizures, as they were usually at night but suddenly started happening during the day time(My seizures only started in May last year for reference and in 27)The day I got admitted I’d fallen during the seizure and hit my face on the kitchen side as I fell, broken nose woo! 😅
I’d been in hospital for a week, still having multiple seizures, and I had a seizure during the day while awake that lasted 45 minutes. I was taken to ICU and was intubated, ventilated and sedated for 2 days. After coming round 4 days after the seizure I was told by a new neurologist that he thought my seizures were none epileptic. I told him that I didn’t agree as my neurologist is certain the nocturnal ones are epileptic. I asked why I would have been taken to ICU and sedated etc if it wasn’t an epileptic seizure. He didn’t answer my question. I just felt like everything I said he was shutting me down on as he told me your eeg while in icu was normal so it wasn’t epilepsy. Baring in mind that I didn’t have a seizure while attached to the eeg. He did keep me on my medication (lamotrigine & brivaracetam?) though but discharged me and told me to try and video the before during and after a nocturnal seizure. The meds seem to be working but I’ve set up a camera in my room and caught one.
I’ve since had a telephone appointment with my regular neurologist who’s told me in his opinion he’s positive my nocturnal seizures are epileptic but it’s possible I could also be having none epileptic ones during the day too, so he is referring me to the specialist epilepsy clinic but he will see me in clinic in 3 months.
However, I have a face to face appointment with the neurologist I saw in hospital tomorrow. I’m literally on edge, panicking and second guessing/doubting myself. Re-watching the video of my seizure wondering what bits he’s going to pull apart etc. I guess I know it shouldn’t be normal to feel this way and I’m just feeling stressed and uncomfortable that he’s just going to shut me down again. Mentally I’m not doing too great already worrying about how all this will impact my two kids (2 under 2😅)
I just wondered if anyone has any advice at all.
If I were to describe what I can see in the video for reference it would be - I’m lay on my back asleep, my eyes open wide staring at the ceiling for 10 seconds then my head slowly turns all the way to the right, while groaning. Then my whole body stretched out and tenses and I make a noise that I can only describe as sounding like a pterodactyl 😅 (Jurassic park kinda thing) then my left leg comes up in the air, bent at the knee, while at the same time my right arm fully extends up on the air fist closed. My left arm is bent and my right leg is straight. I start the clonic phase of shaking my arms and legs still flat on my back and head turned, facial muscles twitching on the left side of my face. Eyes wide open the whole time. Then I just stop. This has been 1minute 58seconds at this point. My mum rolls me onto my side and I start to make really strong strenuous breathing for another 2 minutes before seeming to choke and moving onto my back. I then start pulling at my clothing as if I’m trying to take them off for another minute then I go back to sleep. I was unresponsive to my mum talking to me and I have no memory of this. When I woke up in the morning I felt like I’d been hit by a train and I’d also severely bitten the left side of my tongue quite far back (was swollen for a week😩)
If you’ve managed to read all of this, thank you so much! Any advice at all would be very much appreciated!!
Help - first time seizure mum - Tonic Clonic 
Nighttime seizures advice required
epilepsy and work
No Support…
Son age 8 epilepsy diagnosis
