Sleep and Seizures

[PSU314]

Good morning,

I find that 95% of my seizures occur in my sleep, resulting in partial and secondarily generalised seizures. The other 5% occur shortly after I've awaken, at least within in the next 90 minutes following awakening (or when I'm getting up in the middle of the night to go to the bathroom).

I wasn't diagnosed until I was 23; I am now 33 years old. When I was young I used to find that I was missing a breath; I would breathe out, and shortly realize that I wasn't breathing back in as quickly as I should. Not off by much, but it was recognizable to me.

I find that my breathing continues to be off track sometimes. I realize that I now stop breathing in my sleep (potential sleep apnea), but I also have continuous sinus complications which make it difficult to sleep adequately.

Lately I've been having more seizures than normal (12 in the last 9 months, all of which were in my sleep). Most times I would only find out because of body aches that weren't normal, blood on furniture and walls, and because my family tells me. Sometimes I remember trying to get out a room but having a difficult time, when usually it was a 1,2,3 procedure. I take lamotrigine and oxcarbazepine right now.

I'm wondering if any of the readers also happen to have the majority of their seizures in the their sleep? If so, what do they think the cause might be, or have they sought answers from doctors that can give them a better theory?

I have tried to tell my last few doctors about the problems in my sleep; none seem to want to get to the bottom of it. I've finally pushed one into setting up a sleep study, although he didn't seem to think it would do any good. I've done all the other tests: MRI, CAT and PET scans, EEG (overnight and 5-day). During the 5-day hospital stay the epileptologist pointed out that I had several in my sleep and actually let me go home two days early because of this.

So, any one else faced this, and if so, what did they find? Thanks for listening.

 

[Fedup]

PSU314

All of my seizures are nocturnal or on waking they are grand mal. Yes they can happen after I get up to go to the bathroom, really anytime during the night. I have had a few during the day, there are times when I tend to forget to breath in as you say but this seems to be a result of my seizures. I have woken up to find the bed covered in blood where I would split my head open off a radiator after falling out of bed, I would know nothing about it until I woke and I need a drink of water after a seizure. The cause I have no idea and if the truth is told when a neurologist hears you have nocturnal seizures they tend to dismiss it as if it does not count.

My last seizure, I gave my wife a black eye, I turned blue from holding my breath, I put a disc out in my back and pulled muscells in my back and legs, thankfully I did not hit my head again. Oh there is the headache and blurred vision and more but who cares I am sore enough at that stage. Its good when first see the blood on the wall or whatever and you wounder how did that get there, you eventually realise your missing a pint or two of blood, I have looked for the answers and found none. I had the MRI (a few) I showed the technician how to wire me up for the last EEG, had a few of them as well, you know the others. Its easy work and all the rest when you have nocturnal seizures, all I can say is "let them try it". There is no point looking for answers you will not get, we just have to live with it.

 

[masterjen]

Hi, PSU314 and welcome to the forums!
I have had seizures for 3 years, and virtually all of my seizures occur at night also; the only time I might have seizures during the day is after I had one in the night, and the daytime ones are myoclonic or tonic simple partial, and will be very minor compare to what occurs at night. Sometimes the night seizures wake me up, and sometimes they occur when returning to bed from using the bathroom and I'm almost asleep again. I also have that sensation of having missed a breath (or two) but that is only during a seizure and general sleep apnea has been ruled out. My seizures are partial (complex and simple) largely tonic, and I don't think they have ever generalized.

I have had a few 1-hour EEGs, but they have all been normal; I'm on a wait-list for an in-patient video EEG and sleep study. My MRIs have been abnormal, but not in the way that the neurologist can say "ah ha, there is the cause of the seizures". PET scans do not seem to be a standard here in Canada unless one is being considered for surgery.

As for why they occur in sleep, it is related to what status your brain waves are in when you are asleep. We go through continuous cycles of deep sleep and light sleep during the night, and I believe it is primarily when you are in REM sleep that the seizures occur (a lighter stage of sleep).

A question for you: what is the difference between a 5-day EEG and a sleep study? Here the two terms are used interchangeably.

 

[keaze]

Hello.

I do not have grand mal, I have frontal lobe complex partials, but still know what you are talking about. I've been through it, but have long ago found an efficient method of preventing seizures during sleep. You might already be doing it, I'm just throwing it out there.

I know that lamotrigine absorbs relatively fast, but nevertheless most nights I used to have seizures during my sleep. What I started doing, which helps tremendously, is to take the pills at least an hour before sleeping. I keep calm, don't lie down at all, and let my body digest and absorb the medication properly. I go to bed 1h-1h30 later. I have no idea why it works, but it does work for me. I have no more trouble sleeping, and no more seizures during the night.

 

[PSU314]

Thanks for the replies. I should probably clarify something: "when I was young I used to find that I was missing a breath; I would breathe out, and shortly realize that I wasn't breathing back in as quickly as I should. Not off by much, but it was recognizable to me." By this I meant years before I was diagnosed, at least 10. Never understood why I did it. Still do it from time to time, even when I'm not seizing.

The only reason why I had all the tests done before was because I seriously considered brain surgery. When I had the 5-day/night EEG in the hospital (which actually became a 3-day/night EEG) the doctor informed me that my seizures started in my left frontal lobe, which then fired to the right frontal lobe, or even the left frontal lobe. She insisted that this was a reason I should not have surgery. To get more answers I shortly changed to another doctor who suggested the PET scan for further investigation.

The sleep study that I'm up against is for sleep apnea in general (my family has pointed out that my snoring can take down a house). Although a neurologist set it up (I told him that's what I wanted in order to rule out anything not related to epilepsy but possibly contribute to it), he didn't full heartedly agree that I needed one. But a sleep study I got.

I've realized that the seizures do happen during a lighter stage of sleep. I've had my seizures napping (I set an alarm sometimes for an hour or less, only to be waken by the seizure instead) during the day. These are times that I found myself considerably tired beforehand. Perhaps the tiredness prior to the nap is purely a signal that one is coming. It's almost as if the seizure is the apocalypse, giving me fully warning that I better make a change sometime fast (resulting in a nap).

One more thing. During a doctor's visit a few years ago, he said he found a dark area around my left sinus after an MRI. He left the room to have someone look at it, but when he came back he didn't really say much about it. I've always wondered if it could be a contributor to these seizures at night. I've asked about it sometime after that, but nothing was found in records. No other doctor has brought it up either (except the doctor who diagnosed me, who shrugged it off as sinusitis). But like I said, I have constant sinus problems (I smoke, it's a bad habit I know. I've heard it all. But this is an epilepsy forum and I only listed that habit because it's probably the sinus culprit and the sinus/epilepsy is the issue).

I'm wondering if any one has had constant sinus issues (from allergies, smoking, sinus collapse) that they think might contribute to their seizure.

 

[Nakamova]

Hi PSU314 --

There's definitely a connection between sleep apnea and seizures, though it's not entirely understood. There's definitely a high correlation between the two disorders, and many people find that their seizures are reduced if they use a CPAP machine at night to help them breathe.

You might be interested in these threads from the CWE archives:
http://www.coping-with-epilepsy.com/forums/f23/night-sweats-sleep-apnea-799/
http://www.coping-with-epilepsy.com/forums/f23/nocturnal-seizures-sleep-apnea-9351/

As well as these links:
http://www.abc.net.au/news/2013-06-02/link-between-epilepsy-and-obstructive-sleep-apnoea/4728076
http://www.sleepfoundation.org/article/sleep-related-problems/epilepsy-and-sleep