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?
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!
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.
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.
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.
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!
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