Strange Nocturnal Seizures

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ChristaD

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Hi, I'm new here. Is there anyone here who has nocturnal seizures that only occur when you are sleeping on your back? I do. If I sleep on my side or stomach, it doesn't happen.

Also, do you ever wake up blind?

I have had seizures probably all my life, I just didn't know it. That is what my neurologist says. I didn't start having grand mals till I was 22yrs. old. My seizures had been under control up all that time until December 2011. I had a strange seizure where I had a nasty migraine then all of a sudden the left side of my body went numb. Not dead wright numb, just the tingly sensation. I thought I had a stroke. No stroke, but it was a nasty seizure though. Since then I have had migraines. And seizures during in and/or after a long migraine. Sometimes I don't have a migraine when I have these nocturnal seizures, though.
 
Welcome Christa!

Never noticed anything about laying on my back. But I have caught myself having seizures. I am sitting up and making the same action in repetition. I thought these were just sleep actions until my fiance caught me doing them, and I wasn't responding. Still not sure, I haven't done it for quite some time. The overnight EEG never found anything so I have no clue.
 
ChristaD

Welcom to CWE. Like MuayThaiFighter I never noticed anything like that about lying on your back. I do get migrans now and again and they are bad and an odd time I have had a seizure after them.

MuayThaiFighter I am sorry the EEG showed up nothing for you, but you are a MuayThaiFighter, so keep fighting. I am here for you friend.
 
No worries, they are doing some other tests, thankfully not involving hospital stays.

Christa, do you ever notice a change in the way you feel in different positions before you go to sleep or upon waking up?
 
Hi Christa, welcome to the site!

The majority of my tc's are nocturnal and I've noticed the same thing, I have more seizures when I fall asleep on my back than on my sides. I never sleep on my back if I can help it..

My wife has told me that about half my tc's start when I'm on my back in the middle of the night, but most of those nights I have fallen asleep on my back.. ?
 
Welcome Christa!
A good 90 per cent of my partials are when I'm falling asleep (doc said it can't be classified as nocturnal E tho b/c I do have the odd one while I'm awake), and I never put any thought to it, but now that you ask, yes, the ones in bed I'm always on my back. On my back is how I prefer to fall asleep so that's how I start out every night, and in that split second between awake and drifting is when the seizures hit.
I'm trying to picture ever having one on my side or stomach, and can't think of even one. Weird, thanks for pointing that out.
 
My daughter, 11 has nocturnal seizures and she has had them on her back AND her side, but now that I think about it, she sleeps MUCH better on her side! The last T/C she had was scary, when the convulsing stopped she was weak on one side and could not speak at all for bout 5 minutes or so. I was worried she had a stroke! Im new to this and dont know what is "normal" or not. We are not yet controlled by meds, just started Trileptal and hoping to wean Keppra eventually.
 
LisaBee

There is nonnormal when it comes to epilepsy. The only normal is what is normal for that person. Its always scary and if you think its scary what does an 11 year old think. I lived with this since I was born and I do not mean to be rude or scare you. I cannot talk either for about 5 min as well.
 
Fedup, I didnt take it as being rude. I know it is very scary for her as well but I remain calm during her seizures because I know she can sense my emotions also. I have my breakdowns in private. Good to know the inability to speak isnt so "abnormal". Thanks!
 
In some ways, T/Cs may be scarier to witness than to undergo. At least for the person having them, there's no sense of pain during the seizure and no memory of it, due to the loss of consciousness. Emerging from the post-seizure is another story though. It can take a while -- the brain fog can linger, and not being able to speak or speak coherently is one part of that. I hope your daughter didn't experience any pain with her last T/C.
 
Hi Nakamova! No tongue biting so that was a plus for her, and no pain that she spoke of. I am grateful for that! I wish I could take these seizures for myself instead of her. Just love her so much!
 
Hi Lisa!
Don't worry at all about her not being able to talk for the first five minutes; like fedup said there is no 'normal' when it comes to epilepsy, we all have our 'own,' however brain fog as Nak so properly calls it, and the inability to speak after a tonic clonic IS completely normal. I've never heard anyone say they wake up talking fine, pretty sure that would be a rarity.
My last T.C. was last week and I couldn't get a proper word out for over 1/2 hr. That was a long time for me, but even the other ones I've had it's been 10 mins or more.
And you can take what Nak said to the bank. Being unconscious we feel no pain, so you don't have to worry that while she's seizing she's suffering. I know when you're the one watching you're thinking the worst but you can take it from all of us, in those moments we can't feel a thing. Hugs to you and your daughter and thanks for joining the site!!
 
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