@A MyEpilepsyTeam Member , Like @A MyEpilepsyTeam Member said, I’ve had nocturnal seizures for years. I’m 46 & most but not all of my seizures occur when I’m sleeping. Growing up I had petit mal seizures, now known as absence seizures & would go into a stare & would not be aware of anything that was going on. Then sometime down the road I began having seizures in my sleep & sometime in there I think the absence seizures stopped but I have simple & complex partial seizures & the nocturnal seizures. I also have some seizures while awake but most of them occur in my sleep. I may or may not know if I’ve had a seizure but if I notice something odd then I might or if someone witnesses it like my Mom or stepdad who I still live at home with. In February 2024 I had a really odd seizure being that after about the third symptom that started I knew what was happening & couldn’t control any of it & I was completely aware of what was happening & I’m not usually that aware of things when I have seizure. These last few years it’s gotten to where my seizures in my sleep have gotten worse or changed because one time I woke up with a different pair of PJ pants on with no memory of changing them & almost exactly a year later I had my first loss of bladder during a seizure in my sleep & apparently while in that seizure mode I walked to the bathroom & removed my feminine pad with no memory of doing so & another time I suddenly woke up confused & my hands were like searching for something on my bed & then I snapped out of it & another time I woke up & found myself on the floor beside my bed & was sliding my finger across the side of the bed & another time when I didn’t have a mouth guard cause it broke, I had a seizure in my sleep & bit my bottom lip so bad that it bled, & was swollen, numb & sore & then a few days or so later I did that again but I also bit my tongue for the first time also & it sure hurt. I have insurance now & was able to see my regular dentist this year & got a new mouth & that helped protect my mouth when I had a seizure in my sleep in November even though I did bite my bottom lip, without that mouth guard I know from experience it could’ve been a lot worse. One time my stepdad heard me making noises while I slept & they checked & said I was having a seizure. I’ve probably had them in my sleep for so many years that it’s just something I’ve learned to deal with & not fear, yet since the time of a loss of bladder & walking to the bathroom during that seizure, I now fear of having something like it again. That’s mostly my story of my nocturnal seizures. Your friend in Texas, Becky

Mentioned Users

A MyEpile...

A MyEpile...

Gigi, I think I’d request to look into the rns device. That monitors the brain waves and activities on your brain 24 seven and if a seizure does occur, it will stop it or send a signal to stop it in time.

@A MyEpilepsyTeam Member
Team member @A MyEpilepsyTeam Member has nocturnal seizures so she knows all about them

Mentioned Users

A MyEpile...

A MyEpile...

Hi GiGiMarie, years back I started having nocturnal seizures, my neuro put me on Phenobarbital, took it about an hour before going to bed. stopped having seizures at night. several years ago my my doc weaned me off the drug, haven't had any nighttime seizures since. I have no explanation why they started and why they stopped. the seizures didn't scare me but it did aggravate me when the seizures woke me up and than couldn't go back to sleep. try to stay positive GiGi, we are all praying you get the help you need.

@A MyEpilepsyTeam Member
I have an RNS

Mentioned Users

A MyEpile...