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Does Anyone Have Nocturnal Seizures In Their REM Sleep?

Does Anyone Have Nocturnal Seizures In Their REM Sleep?

98% of my seizures happen during my REM sleep usually after 3am or later in the morning. I'm pretty much on a two week cycle. I have been on numerous AEDs and nothing seems to break the cycle. Was wondering if anyone has these types of seizures and have they found a treatment that has help reduce these type of seizure activity?

posted October 13, 2021
A MyEpilepsyTeam Member

Ldulaney, thanks for your personal story. I'm fortunately pretty stable the past 8 years, I have had seizures during the day. couple at work but there usually a reason why it happened, stress, lack of sleep or med change. Those are pretty scary I black out like a light switch and walk out of the building. Then like a light switch I'm back to my normal self. I know immediately because I sense the lost time but have no idea what happened. Everyone who witnessed it say you did not act like your usual self. My baseline is to have a seizure every two weeks at 3am to 6am even at doing my best, No matter what I do. you can set your calendar to to it.
Thanks again for your story!

posted October 24, 2021
A MyEpilepsyTeam Member

I was diagnosed at age 13 with gran mal and petit mal. I have had one instance of lost time. December 2019. A friend called the police and told them she thought maybe I was trying to commit suicide because my husband had died in 2017. They sent me to a mental institution for a 72 hour evaluation. They said I was fine and sent me home. But I had never heard of nocturnal seizures till I joined the team. The doctor there asked if I had ever lost time like that before and I told him no, never. Not that I know of, I didn’t remember any. Now I can’t help but wonder.

posted December 25, 2021
A MyEpilepsyTeam Member

When i first start having seizures, it will be during bed time. I will wake up out of my sleep and have a seizure. As time went by, i began to have them anytime of the day.

posted October 22, 2021 (edited)
A MyEpilepsyTeam Member

Don’t you love some of these doctors. Your story reminds me of the joke. “I went in to see the doctor because my arm hurt when I bend it and he/she said then don’t bend it”
I do believe good sleep hygiene plays a big part in balance of controlling epilepsy. I’m not trying to dismiss the fact that lack of sleep is a key trigger. My problem is when I go into REM sleep I have a high tendency to have a seizure. He is one other oddity I am more apt to have a seizure if I sleep in. I’m on a two week cycle of having a seizure in my sleep. My fear is I have another type of neurological disorder that is causing my seizures because before my first seizure I came down with tinnitus 6 to 8 months before. One item that I have looked into is REM Behavioral disorder (RDB) with usually leads to Parkinson’s 5 to 6 years after your diagnosed. The majority of my nocturnal activity really doesn’t even look like atypical seizure activity.
The hardest thing is trying to bounce ideas off of the neurologist. I never had any daytime seizure activity until I was on AED dugs. I know my glass is half I just want to fill it and or make sure it stays half full.

Thanks for the input and feedback.

posted October 15, 2021
A MyEpilepsyTeam Member

I don’t know about Nocturnal but my doctors in California told my parents that I was one of those kids that needed a lot of sleep. And I very seldom ever reach the rem phase. That was in 1970 or 1971 because I turned 16 in June of ‘71 and graduated before I was 17 in Los Angeles High. I don’t recall them using the word nocturnal. But they also told my parents that I was making myself have seizures, that I was controlling them. I’ve also had two doctors tell me that, one in Ky., and one in Indiana at Deaconess. If I was controlling them, then I would cure myself!

posted October 15, 2021
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