I have them rarely, and then only when I dream, and in my dream I start having a seizure, always at a time that I would probably have a seizure in the situation I’m dreaming about. I will wake up having it. So, my question is always, which came first, the chicken or the egg? 😂

@A MyEpilepsyTeam Member You live alone? That’s pretty scary! I have tonic-clonic and that’s one of the first questions my neurologist asks me when I visit. I hope you have someone (your daughter?) call you daily! It’s not safe to live alone if you have to be woken up and you have aphasia (looney-tunes!) for any length of time. There are times my son has found me (I live with them) and I wake up in a hospital being pumped with Ativan! If you live alone, you really need to have someone come in/call at least daily to be safe! ❤️

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A MyEpile...

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!

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 was told I needed more sleep because the REM cycle being skipped during my night seizures.