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Can Anyone Please Share Your Experience And Symptoms Of Night Time Seizures?

A MyEpilepsyTeam Member asked a question 💭

I'm trying to understand what my child of 3 year old may be having at night time. His neurologist thinks it may be (nocturnal) partial seizures, but we are not 100% sure. Behavior he would display includes
- he makes a clicking sounds with his mouth/tongue while lying down in bed
- suddenly wake up in the night and starts screaming and crying
- repeatedly trying to sit up in bed, then lose balance and falling down
- thrashing around (in bed)
- sudden fearful look in his face paired with fearful… read more

April 5, 2023 (edited)
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I don’t know much about night time seizures but I know a lot about being a kid growing up with epilepsy. Before I had seizures I was a smart kid but a few weeks after my first seizure I couldn’t remember anything. I’m still that way as an adult. My teammate @A MyEpilepsyTeam Member has had nighttime seizures for a while. She can possibly give you some info about nighttime seizures.

April 5, 2023
A MyEpilepsyTeam Member

Those actions sounds like your son just had or is having seizures, “clicking sounds with mouth and tongue”, being off balance and just not doing the usual beheaviors he usually do. Most of my seizures are at night in bed and my bf now keeps a roll of paper towels next to me because i drool or bleed when i bite my tongue during the seizure. I too stare off and say or do random things for a bit.
The thrashing around is when i have a grand mal but after that is done, there are times where i want to walk around or do things on my own, this is what happens after the seizure, this is the after effect of a seizure and i am still not back to normal yet unless i go back to sleep for my brain to recover itself.

April 7, 2023
A MyEpilepsyTeam Member

When I use to have them I would go into a shaking state? My eyes would roll to the back of my head. I would get very strong during the seizure. Sometimes wet myself. Then blackout. Whenever I woke up. I remembered nothing.

April 6, 2023
A MyEpilepsyTeam Member

Hello @A MyEpilepsyTeam Member, I've been told during nocturnal seizures that I scream out, loudly enough to awaken my husband, and then the episode will proceed with tongue chewing and writhing about. I hear that I also get really stiff. My family says it can be hard to try to keep my body still. To keep me from rolling off my bed. All that I remember from these is awakening in the ER on most cases because of how long this night time episode lasts. Something that my husband did was to record an episode and we shared it with my neurologist.
I hope something from this gives you some insight. 🙂

November 22, 2023
A MyEpilepsyTeam Member

The only way I know that I seizure when sleeping , is when I instantly wake up out of a deep sleep.

April 5, 2023
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