Sleep and Seizures

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KelVarQ

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Something I've been meaning to mention...although the Gluten-Free diet is thankfully controlling my seizures (95% GF diet and the other 5% is up to me to control).

Out of the 5% of what I need to control (obviously supplements are included in the 5%) I noticed another trigger which I don't recall reading about. My seizures are nocturnal CP's and 95% of them happen in the early am hours (4am or so). It has something to do with transitioning in and out of REM sleep (which the GF diet seems to be controlling). BUT...a definite trigger for me is being woken up out of a sound sleep (when there's NO chance of properly transitioning out of REM). We all know sleep is crucial for E patients and I found that, at least for me, it's just as important to wake up naturally otherwise I will seize immediately upon waking if woken up out of a sound sleep. I know I'm lucky that I have the luxury of waking up when I wake up, but if you know you require a certain amount of hours to wake up naturally perhaps it might be helpful.
 
That's good to know. Some people are triggered by the "startle reflex" maybe that's part of what's going on with you. When you are woken up suddenly, is it because of noise, or someone shaking you?
 
Actually Nakamova I think for me it is the startle reflex. I never thought of that and being woken by noises rather than shaking. I've NEVER been a morning person for as far back as I can remember and even prior to RTL surgery the majority of my seizures were in the early am hours (either in sleep or upon waking) and if I didn't get enough sleep then I would have them during the day. Prior to surgery I was working and had to get up to an alarm clock and it was ALWAYS a struggle for me getting out of bed.

Matchu, the only time I was waking drenched with sweat was when they had me ODing on Dilantin. I knew something was up because I really don't sweat and I was drenched with sweat and couldn't keep my eyes open and I actually started to smell. The smell came from the poison coming out my pores. Needless to say I fired that neuro. However, I did watch myself have a tonic clonic off the video from the hospital EEG and I can tell you that within seconds I was sweating with the TC. I was shocked at all the sweat and asked the dr. about the sweat and his response, "Yes, you're sweating since the TC is like doing 50 workouts in about 5 minutes. Keep in mind ALL our muscles are contracting at the same time and that's why we're so exhausted afterwards. I know for me 3 or so days after having a TC I feel like WONDER WOMAN where I feel extremely powerful and energized, which the whole 50 workouts in 5 minutes made more sense to me then.
 
Ask around, and you will hear that many of we people with "E" have our seizures while asleep in the morning or just after waking up. I was troubled by this routine in myself for years until I realized two things: (1) my blood sugar is very down by 7:00 AM, and (2) it has been over 12 hours since I took my anti-seizure medication. On top of that is that I consume a cup of coffee almost upon getting up. That caffeine and my half-asleep/half-awake status do not work well together. But then, I have become a bit grateful. At least that seizure is out of the way. And until it was a real "knock 'em dead" type, I'm up and about after a tiny bit of sleep afterwards.
 
Hey George,

Yes, I realize many of us have our seizures in our sleep and actually many years ago Epilepsy was referred to as a "Midnight Disease". It just wasn't until recently did I link the "being woken" from a sound sleep was not good for me and I should've recognized this prior to RTL since the majority of my seizures were in my sleep or upon waking. My neuro mentioned it has to do with properly getting in and out of REM. The "Delta Sleep System" CD's also help and I haven't had caffeine in years since I know that's definitely a trigger for me. Be careful with that morning coffee ; )
 
Wow! I was pretty sure that I was the only one who my seizures in sleep around 3 or 4am. I really hadn't heard anyone else talking about it. The majority were about day time ones. I feel so vindicated! I think mine are because my internal clock starts to wake me up, and if I am not sleeping soundly enough, then I have a seizure. My medication levels were off a bit, so I have recently had my doc raise my Keppra another 500mgs at night, so now I have 1,500 before bed and 1,000 in the morning. He has also added Vimpat 200mgs to the mix.
 
I never even though that seizures I have right after waking up could be from the alarm waking me up when I was still in a deep sleep and not in a light sleep. :ponder:
 
matchu said:
does anyone ever wake up and be drenched in sweat?
Click to expand...

This has happened to me severl times within the last few months. A while back it happened every night for about 2 weeks straight.

I'm the type of person who would sleep in flanel pj's with 4 heavy blankets on top of me (not joking) and be just fine at night. I've been waking up covered in sweat and end up taking all my clothes off (mainly because they were soaking wet) and sleeping with just a sheet on top of me.

Also I'll wake up alot hearing the phone ring. I've usually got it beside me so I'll grab it to answer it but no one has called.
 
Wow, some interesting stuff in this thread that I hadn't come across before. I thought I'd better put in my application to join the nocturnal early Am seizures club anyway, even if it is a bit belated. :)
It seems very linked to sleep transitions to me too; most common seems to be either shortly after going to sleep or sleep onset, or quite a few hours later when I would presumably be coming out of deeper sleep (if unimpeded by seizures, which sometimes confuses the issue, especially as that seems more likely to be the time when I get bad ones, or ones that seem likely to have been bad but are difficult to remember).

Since people mention it, I've particularly had the waking up covered in sweat associated with seizure experiences later in the sleep cycle (raised temperature and heartrate with any type of seizure is commonplace for me, and these typically seem to be longer lasting than the ones that occur earlier, which are more likely to wake me up instead).
 
I was woken up by one at about 2am this morning. Par for the course. Most of my seizures are nocturnal, and happen between 2 and 3am. They are almost always fear seizures. They aren't a sleep disorder or a bad dream, as my mom has suggested. She just doesn't get it when I explain the weird feeling that comes with a seizure that sets it apart from anything else.

Drenched in sweat... what are your meds again? Rotten memory on my part. Some of the meds have that side effect.
 
I can seizure any time during the day or night, but my most severe seizures seem to be occurring in my sleep somehow. Whenever I wake up dazed and confused, I can pretty much bet I'll be seizuring all day on and off.

I've noticed, too, that if I have one of these mornings...wake up dazed and confused, seizure clusters all day...I won't seizure again for at least a month.

On the other hand, if I wake up fine and seizure later in the day out of the blue (at 1pm or 6pm), my next 'seizure day' won't wait a month...I'll seize again in another week or two.
 
My daughter's happen almost nightly about 45 mintues to one hour after she goes to sleep. Is there anything that can be done to help with this difficulty transitioning from one stage of sleep to the next.....besides AEDS?
 
maddiesmom said:
My daughter's happen almost nightly about 45 mintues to one hour after she goes to sleep. Is there anything that can be done to help with this difficulty transitioning from one stage of sleep to the next.....besides AEDS?
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You can try Taureen. It's an amino acid that helps you sleep and has anti-seizure properties.
 
Be careful with amino acids. They all work synergistically in conjunction with each other. Taurine works in conjunction with Tyrosine.

Also, Taurine is known to give energy, not be sedating. That is why it is in most energy drinks.

Taurine is an amino acid that is is plentiful in our diets, and can also be endogenously manufactured. It’s involved in an array of physiologic functions. What’s not clear is if exogenous taurine supplements have any meaningful effect on subjective or objectively measures of “energy” or performance.
Click to expand...
http://sciencebasedpharmacy.wordpress.com/2011/01/06/energy-drinks/

I've seen a lot of claims taurine is good for epilepsy but nothing scientific so I"m very skeptcial

A little bit of trivia... Taurine got its name because it was first isolated in ox bile.
 
Taurine can modulate glutamate, and mitigate the effects of MSG for those who are sensitive. But there aren't detailed studies of it, and it's unlikely that just taking taurine would lead to seizure control.
 
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