Nocturnal seizures

[Spotty]

Hi there!

My first seizure didn't hit me until my 30's. It was a tonic/clonic while I was sleeping. I woke up briefly right before, realized something was wrong then couldn't breathe and everything went dark. I woke up in the ambulance and when my husband described what happened, they deemed it a seizure and put me on Dilatin (which was vicious). My Dr. was thinking/hoping that it was a one-off and took me off the drugs.

I made it a year and half before the next one happened and it was the same as the first where I woke up right before and I was able to smack my husband to wake him up before it went black. Now I am on Lamictal and besides the side effects which I am not a fan of, I was seizure free for almost 3 years. My neurologist and I were actually working on a plan to back down my meds to help combat the side effects but still control the seizures.

Then I had another, but this time it was a partial. Again nocturnal, I woke up right before but stayed fully conscious the whole time and it was just my head/jaw that kept jerking to one side (funny noises/drooling to boot). I had a cold at the time and mistakenly took herbals without thinking like I used to before I became an epileptic, so we chalked it up to that.

Over the last few months, I wake up periodically feeling like I am going to have another one of those partials. I'll sit up, it will feel like my head/jaw is going to start moving but then I will breathe through it and it will pass. I've even woken up my husband a few times to prepare him but then it goes away. Has anyone had any experience with this? I've been researching if it's maybe a panic attack then goes into a seizure, or do some partials actually "stall out"?

 

[Nakamova]

Hi Spotty, welcome to CWE!

Lamictal works by stopping a seizure from spreading after it starts. So it could be that you are experiencing the early sensations of a seizure before the Lamictal kicks in. Of course, it's also possible that it's a panic attack. Do you keep a journal of when it happens? It could be that there's a trigger that makes you more vulnerable on those particular nights. Maybe something you've eaten, or how well you slept the night before, etc. I assume you don't drink caffeine or other stimulants, but if you do you might want to reduce them to see what happens. Another thing to consider is a magnesium supplement after dinner or before bedtime. Magnesium plays a role in brain health and in relieving muscle tensions -- twitches, jerks, cramps, etc.

Best,
Nakamova

 

[nicholas:)]

Hi-ya! I had nocturnal seizures for years. I always would be conscious throughout. Nocturnal seizures can happen any time one goes to sleep be it day or night. I was on Lamotrogine which stepped in to stop the seizures just as they were starting - this in itself could be quite alarming. Now I'm on tegretol, pregabalin and clonazepam which at present control my seizures (I am seizure free).

 

[Spotty]

I was on Lamotrogine which stepped in to stop the seizures just as they were starting - this in itself could be quite alarming.

What was this like for you?

 

[Spotty]

Hi Spotty, welcome to CWE!

Do you keep a journal of when it happens? It could be that there's a trigger that makes you more vulnerable on those particular nights. Maybe something you've eaten, or how well you slept the night before, etc. I assume you don't drink caffeine or other stimulants, but if you do you might want to reduce them to see what happens. Another thing to consider is a magnesium supplement after dinner or before bedtime. Magnesium plays a role in brain health and in relieving muscle tensions -- twitches, jerks, cramps, etc.

I've never kept a journal, but stress/high emotions seems to be a big trigger for me. I do drink one mug of coffee in the morning, but haven't changed that habit over the last 12 years so it's not on my radar as an issue. The magnesium tip is really interesting, thank you!

 

[nicholas:)]

What was this like for you? by Spotty.

On Lamotrogine my seizures would start.. I'd be conscious, then it would be in slow motion and they would stop abruptly - as if the medication had warped them and was cutting them short. I hated this effect. I stopped the medication and changed to tegretol, pregabalin and clonazepam. Any help?

 

[Chaz1]

welcome to CWE spotty

have you had EEG?

sleep study is on the cards?


http://www.bcset.org/CLARKBASH SEIZURES IN SLEEP 2009.pdf

 

[Spotty]

Thank you everyone for the warm welcome!

Chaz - I've had a few EEGs, 1 normal, a couple inconclusive and 1 that showed an issue with my left side.

No sleep studies. I think my Drs. felt since they were not happening often enough (that we noticed) that they wouldn't catch anything. But now I'm not so sure. I've also had what I assume are night terrors.

Nicholas - That's really interesting. Mine are kind of similar. I wake up with a start and then it feels like I am going to have a partial, but it never kicks in. I read somewhere that some people can prevent one through breathing or repeating a mantra, so I've been curious about that as well since I am immediately upon waking trying to methodically calm myself down. I'm so happy that you are seizure free!