What are nocturnal seizures like?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

valeriedl

valeriedl

VIP
Moderator
Supporter
Messages
5,811
Reaction score
827
Points
268
I don't know if I have nocturnal seizures but I was wondering what they like?

There have been times I've woken up in the middle of the night hearing things. I've woke up like I just came out of a nightmare - light headed, butterflies in my stomach and that sort of things. Are these sorts of things that can happen in seizures? What are?
 
Sometimes I wake up hearing things. With me it is phones ringing (no idea why). I also have this feeling of impending doom. It feels like being tied to railroad tracks with a locomotive bearing down on me but I can't move or even breath.
Sometimes if I can make myself breathe, I can get it to stop before it goes full blown.
 
^that sounds like panic to me. As if perhaps there was an anxiety regulating portion of the brain effected during the seizure along with others, sound, and even your sympathetic-parasympathetic. That's a lot of areas of the brain, imo. I once read that an odd cure for panic disorders was to high dose inositol. A study of people not responding to traditional drugs or something.

http://www.ncbi.nlm.nih.gov/pubmed/11386498

A quick search tells me that inositol has a negative effect on breathing in a small sample of people when taken as a supplement. While others report a positive effect with asthma.

It is also mentioned as having a role in hearing, and they gone so far as to investigate it's role in tinnitus in clinical trials.

I bring it up, because inositol when produced naturally in the body is a sugar produced by the kidneys. When my seizures first struck with regularity my kidneys were my main concern because they were seizing quite a bit.

In any event, I'm not suggesting inositol as a remedy, I am only trying to bind together your symptoms so I can suggest what I am reasonably confident helped my kidney condition in the face of urine and blood tests saying they were fully functional and fine.

Milk thistle worked the most effectively with me to my understanding. Mind you after I took the stuff, my kidneys improved substantially, but other areas in my system may have been negatively effected. I just don't know with any absolute certainty.

I am no nephrologist. I could be totally wrong, and I am only throwing down words in the event they could be useful.
 
Last edited:
For me I have an often hazy memory of specific motor activity that kind of wakens me. The next day usually confirms that it was a seizure based on how I feel (ex. if it was a seizure I will have a headache, muscle fatigue, and tingling the next day).
 
MrKap,
I don't have a panic disorder. I have epilepsy. Panic sensations are a very common pre-seizure aura. I didn't describe the basic tonic clonic thrashing around and biting my tongue because I figured that was a given.
I also don't have tinnitus. Auditory hallucinations are also a common aura as are olfactory hallucinations depending on the region of the brain where the seizures originate.
I'm glad inositol helped your kidneys but mine are just fine.
Diagnosis by pubmed can be incomplete at best although I appreciate the concern.
 
valeriedl

I would be sound asleep when it happens, I hold my breath that is obvious even to me because I am gasping for breath when I start to come around. AlohaBird is right it feels like you were hit with a train and then for good measure a lorry went over you, but then along comes the headache for me its like having 20 people with sledge hammers inside my head. I go for the phone as well when I come out of it and from my abdomen to my chest feels like butterfly's.

MrKap trust me there is no panic attack or anxiety, valeriedl is pretty close in some of the things that happen to me as well.
 
Aside from feeling like I'd been run over by a truck and my tongue being sore, I have no recollection of what has occurred. In an earlier post I'd mentioned that when I first started having seizures they were nocturnal and according to my husband I would get up from bed, go to kitchen to start cooking, then go in closet, get dressed and get back in bed.
Since I'm alone now it concerns me that lately I've been waking up feeling sore all over. Sunday I woke up with stabbing pain in my lower right back.
Probably should call the dr.
Another strange thing is that I don't get headaches. I've had maybe 4 in my lifetime! I'm happy but I know from others that that usually happens after.
Again, the human body is a wondrous thing!
M
 
Hi valeriedl,

My experiences so far have been ones where I can't remember the actual tonic clonic seizure and that everytime I have "awoken" pretty annoyed because it feels like (for me) that I am finally getting awesomely some deep sleep, but that someone is being noisy. (But everytime that I know of, apart from my very last tc) someone has seen it and has tried to "wake" me up.
So this last time (and every other time) I knew because my mouth tasted like blood and usually my tongue was bitten. Apart from that, the day after they happen, all.my muscles feel like what they feel like when you do a way more intensive or longer work out at the gym. Lol so really it's just sport and fitness that you dont remember hehe :)
 
Over the course of 30 years, mine have evolved from no recollection, bam, out like a light. Just the sore muscles, munched tongue and like Fedup said, those darn 20 little guys with sledgehammers inside my skull that I have to carry around for the rest of the day.

Gradually I have gotten more and more warning, thanks largely to my wonderful seizure alert dog who wakes me up when one is coming.

If I can get all the way awake, like I said I can sometimes make it stop. But sometimes, even if it proceeds, if I can hang on to consciousness, it is a lot less painful later. I don't bite my tongue and the headache is much less severe and long.

Recently I read about, if your seizures start in one limb and you can isolate that area of the body with some kind of tourniquet, you can interrupt the nerve signals and make it stop. My first thought to that is yeahright, I don't really have time to find a tourniquet with the freight train bearing down on me. But then a few weeks ago I woke up and my left arm was twitching (mine always start in the left arm for some reason). I was able to just grab my own arm, literally get a hold of myself, right hand around left upper arm and it was amazing. The seizure just stopped like a light switch going off.
 
When I was married, I did not know I had a grand-mal seizure in my sleep until I woke up many hours later and my husband told me. When we divorced and I lived alone I would wake up in an upright position still convulsing. I always felt that it was the fear that I was alone why I woke up in the middle of convulsing compared to my husband being there and I didn't even know I had the seizure until I woke up and he told me..
 
I'm pretty sure the very first seizure I had 12 years ago I was asleep when I had it. I had been spending the night at my boyfriend at the time's house I was dating and woke him up during the night shaking in bed.

I don't think I'm shaking or doing any type of moving around when I'm having what I think are seizures now because none of the sheets are messed up and the cats are still in bed with me. I know if I were moving around they wouldn't be there.

I'm pretty sure I've never sat up when I've 'come out of it'. Just suddenly woke up and opened my eyes having those nightmare feelings.
 
I had seizures at night as a kid, but everyone thought i was having bad dreams. The first time I had a seizure at night, we didn't know it was a seizure, I had actually had a bad dream too and must have gone into a one after. (I still remember that dream too!) I woke up with a bloody nose and my Mother at the side of the bed trying to wake me up to stop the heavy flow coming from my nose. So then we all associated what I did during them, since i did the same thing every time, as my having a bad dream and not a seizure.
 
Last edited:
My doctor has videos of me having seizures in my sleep. He says they were simple partial because there was no EEG reading. I was being observed because he thought I had REM Behavior Sleep Disorder. After seeing the activity, he decided it was the epilepsy. I actually signed paperwork allowing him to use it during lectures. I was doing situps randomly throughout the night. I would wake up sometimes in my sleep with the same thought going through my head. I can never remember afterwards, but when it would happen, I knew it. It was similar to any simple partial I would have during the day. I do remember doing some strange things, like throwing things or rolling over onto my wife. Doing some strange things that I wouldn't do if I was thinking clearly. Other times I remember nothing. For instance, one time I pinned my wife and slapped her. No memory of that one.

In your case, you could just be in a dream state as you wake up, or it could very possibly be a partial seizure. It is worth mentioning to your doctor and possibly adjusting your medication.
 
Thanks everyone.

I went to my neuro today and told him about it. He said it's possible that it could be seizures I'm having. He said to keep track of them. I wasn't before because I never really thought that they might be seizures.

He may want to do a EEG/EKG (can't remember which one he said). It was a type that you can take at home and don't have to be in the hospital to have done.
 
valeriedl said:
Thanks everyone.

He may want to do a EEG/EKG (can't remember which one he said). It was a type that you can take at home and don't have to be in the hospital to have done.
Click to expand...

Probably EEG. That is how mine were diagnosed. I wore it for 72 hours and hooked up to the camera every night. It is a good reason to be lazy all day.
 
Thanks. When it gets into things that are done with letters - MRI, EKG, EEG, CAT and so on I get all mixed up!

That does sound like a good one to get done. Might get me out of doing the cooking!

Did you have to go off of any of your meds when you did it?
 
I didn't change anything for the test, but that will be up to the doctor.
 
You must log in or register to reply here.
Back
Top Bottom