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Living With Nocturnal Seizures
A MyEpilepsyTeam Member asked a question 💭

Does anyone have only nocturnal seizures and live alone? If so, do you think many of your seizures go undetected? What changes have you made to make things safe for yourself? Other than biting your tongue, what other signs tell you that you've had one? I don't bite my tongue, but I tend to feel very dizzy, tired for a few days, my shoulder and neck are particularly sore. I stopped falling out of bed, because of the pillows I've set up. It's hard to keep a seizure journal, if I don't really… read more

posted May 9, 2017 (edited)
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A MyEpilepsyTeam Member

i also have seizures in my sleep. i had 6 seizures in my sleep during my 48hr. ambulatory eeg. i have on occasion wet my bed. the most recent one, i had soiled myself and the bed. i also live alone no fun.

posted May 15, 2017
A MyEpilepsyTeam Member

Unfortunately I have both seizures at night and during the day. The nocturnal ones are scary because they never come with a warning. I've always suspected it, although I didn't realize how many I actually had until I moved in with my bf this last fall. I would wake up the next morning- he would tell me I had a grandmal in my sleep, and I wouldn't have even known. I wouldn't have even guessed. Sometimes I know for sure when I've had one, if it's really bad. I wake up with a sore jaw, headache, and wet covers. Anyways, I hope this helps. I know it's scary

posted May 11, 2017
A MyEpilepsyTeam Member

I live alone and have some nocturnal seizures. That is frustrating not knowing for sure. I probably have not recognized some that have happened. I do have auras sometimes, but does not always mean a full seizure. I can be so tired and forgetful in the morning. My motor functions do not work properly. I feel so weak and confused for days. These symptoms tell me it was a nocturnal seizure. I try not to make big changes. I keep my home "familiar" to me.

posted May 10, 2017
A MyEpilepsyTeam Member

I have 95% of mine at night and usually only have deja vu episodes during the daytime if anything, but I've never had a grand when I was awake. Used to be I knew the next morning after having a partial seizure, but then they changed up my meds because of some depression issues and now I'll actually have to check with my wife to see exactly what happened the night before, and sometimes I don't remember them at all. Mine have gone from waking up doing some lip smacking noises and feeling really nauseous to yelling things out, apparently sometimes at the top of my lungs, as I'm having them. Usually my yelling has something to do with having to pee really bad or my other favorite is "I'm going to barf!!!" lol My poor wife always reassures me that I'm not going to barf and then tries to have me get up and walk it off by actually going to the bathroom. I've had some nights where I'll do all of this and be totally clueless in the morning that any of it ever happened.

posted September 18, 2020
A MyEpilepsyTeam Member

I too have nocturnal seizures. If my family doesn't see them I don't know except how feel. Unfortunately alot of the time I am not in my bed. The last bad one I had was in a hotel when a tornado went over my house and hit my head on a nightstand resulting in a concussion. They do make cameras to put in your room specifically for seizure patients

posted March 7, 2020

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