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Old 09-29-2012, 11:06 AM
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Waking Up when you have Nocturnal Seizures


If you have nocturnal seizures, do you find that waking up is a problem?

I mean, does it provoke a seizure for you if the alarm clock suddenly goes off, or if someone wakes you up in the morning?

I am finding this problematic with both of my children who have nocturnal seizures. I have to be very careful and gentle when waking up my older son for school, and I do my best not to disturb my infant at all while he is asleep.

I had an incident in my past where I believe I had a seizure that was triggered by the alarm clock. The sound shocked me and jolted me out of sleep, but I felt paralzyed and was unable to get up to shut the alarm. I also had an incident the other night when one of my kids woke me up from a deep sleep and shocked me. My arm started jerking and then I fell back asleep.

Just wondering what other people's experiences are. Do you take special precautions when waking up in the morning?
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Old 09-29-2012, 11:47 AM
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Its funny in a way, that is when I look back. The alarm clock can be a problem of course, and cause you to have a seizure when you hear it go off. I found with an alarm clock - and I have two - that if you listen to the alarm and tell yourself when you hear that noise its time to get up, it does not seem to effect me, but it did at the start.

If you are in a very deep sleep and you are woken suddenly or unexpected you can get a seizure. You are probably right about waking the infant, my parents done the same with me. To get me up for school, what was suggested by a doctor and probably the best I had, was to turn the radio up loud in the kitchen or make some noise that can be heard which will gently cause the child to wake. Pillows were placed either side of the bed so I could not hit my head off anything as I already ended up getting stitches in my forehead for this reason.

Apart from doing your best, which you are doing you cannot put them in a glass house, so accidents will happen. Sorry but I hope something was helpful.
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Old 09-29-2012, 07:14 PM
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I have a clock radio set to a news station that I use when I need to set the alarm. The volume is relatively low, so the voices sound like murmuring. I much prefer it to beeping alarm noises.

Do you find other sudden sounds or movements also trigger seizures for you or your kids? You might be have "startle epilepsy" and be a little more vulnerable to those things.
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Old 09-30-2012, 12:00 AM
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Thank you for your responses and tips. I have never heard of startle epilepsy. To me, it seems like the problem happens when waking the person up during the wrong part of the sleep cycle. In my case, I don't think it was the noise itself but more the shock of being woken up from a deep sleep. I no longer use a loud beeping alarm clock. I use a very soft alarm and press the snooze button several times until I feel that I am fully awake. It takes me about 30minutes (3 snoozes!) to feel okay. Previously I used to just jump out of bed upon hearing the alarm. It makes me very uncomfortable when someone talks to me while I am asleep.

I have certain bedtime routines for my infant. I always put him to sleep at the same time in a dark room. If I deviate from this, he is likely to have a seizure. The other night, we were visiting family and he fell asleep about an hour late in my lap in an environment in which there was a lot of light and noise. Soon after that he began having a seizure while asleep.
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Old 09-30-2012, 09:18 PM
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Our Jonathan has had seizures when startled awake. One time I didn't realize he was asleep (in the evening), and went into his room, talking a bit loudly, and he just sat up with a start, then went into a seizure.
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Old 10-02-2012, 12:32 AM
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Karen,
I wonder if he was already having a seizure when you woke him up? This is what I have been trying to discern lately before I wake my son up. I try to observe him for at least 2-3 minutes before I gently say his name. If I notice he is having any seizure activity at all, even if it is something subtle like a finger twitching, I do not attempt to wake him up.
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Old 10-02-2012, 06:27 AM
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I don't know, as I didn't even know he was asleep until he started and sat up suddenly. I do know that sometimes when he awakes, he acts all startled, and has this shuddering thing going on -- the shuddering can go on for about 10 or 15 minutes. But he has done that when he had a sleep EEG, and it didn't register as seizure activity.

More recently, he has seizures when he wakes up, but it's after he's been awake for a little while. He'll wake up at night, and seem very uncomfortable -- sitting up, and then lying down, and just tossing and turning -- and then he'll have a seizure. Or, he'll get up in the morning and go out into the living room, and after maybe 20 minutes, will have a seizure.
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Old 10-03-2012, 07:38 PM
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Quote :
I use a very soft alarm and press the snooze button several times until I feel that I am fully awake. It takes me about 30minutes (3 snoozes!) to feel okay.
You might be interested in something like this:
http://www.myzeo.com/sleep/shop/feat...r-bedside.html
One of its functions is to wake you at the "optimal" phase of sleep.
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Old 10-03-2012, 10:14 PM
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I'm all about the seizures when woken up in the wrong phase of sleep. It seems to be that if I have more than 4 hours sleep, it doesn't matter when I get woken up (but I have to get a full night sleep the following night). However, if I get woken up in the wrong cycle within 2-3 hours after going asleep (like to go to the toilet or something), then it's a couple of Myoclonics followed by waking up in the morning exhausted, confused and with a nice tongue bite.

That Zeo thing looks cool, but it's a bit expensive, no? Although I would pay a lot more than $150 to never have a seizure again!

I've tried using the smartphone sleep apps and they've been pretty good so far. My alarm at the moment has like a rising natural noise (like birds or water or something). That generally wakes me up nice and gently, followed by 20 minutes of snoozing just to make sure.

So basically, a nice alarm and not drinking too much (water) before going to bed are the keys for me at the moment. After that, anything else that startles you awake is just bad luck, you can't legislate for everything I suppose
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