Epilepsy Talk
The night fright of nocturnal seizures | September 6, 2022
I can remember trying to rip out my hair. The inside of my head was going at a million miles an hour.
Sure, I was lucky I didn’t pee in my bed or fall off it. And happily I didn’t bite my tongue. Or end up bruised and sore.
But I was exhausted. With a horrible headache.
Like many, it was hard to stay awake during the day. (Hey, I’d just been up all night. Afraid to go back to sleep.)
It was an endless cycle. I couldn’t sleep. I couldn’t stay awake.
The curse of nocturnal seizures.
Well, I was in good company.
Studies have shown that 10-45% of people with epilepsy have seizures that occur predominantly or exclusively during sleep. Whereas 34% have seizures upon awakening. And 21% have diffuse seizures (while both awake and asleep).
But not everyone knows they’ve had a nocturnal seizure if they have one!
And distinguishing nocturnal seizures from other sleep behaviors, such as sleepwalking or night terrors, can be challenging.
If you live alone, you may wake up tired, but not know you’ve had a seizure. If you don’t experience daytime seizures, you may be unaware you are at risk for nighttime seizures.
To make it more confusing, if you have unusual nighttime behavior, headaches in the morning, or unexplained mood changes, it could be a kind of parasomnia — an umbrella term for a group of sleep disorders that include night terrors, sleepwalking, teeth grinding, and restless leg syndrome.
Nocturnal awakenings are sometimes confused with insomnia. In other words, you’re unaware of the seizures that occur while you sleep.
Here’s the science: Sleep activates electrical charges in the brain that result in seizures and seizures are timed according to the sleep-wake cycle. That sleep-wake cycle is associated with prominent changes in brain electrical activity and hormonal activity, so seizures and the sleep-wake cycle are closely related.
Normally, people cycle through all of these stages several times during the night.
On occasions, nocturnal seizures can be misdiagnosed as a sleep disorder and certain sleep disorders can be misdiagnosed as epilepsy.
For some people, seizures occur exclusively during sleep.
Others have seizures as they are falling asleep or waking up, and still others have seizures randomly spread throughout the day or night.
The way seizures spread through the brain also seems to differ depending on sleep state.
Interestingly, frontal lobe seizures begin during sleep more often than temporal lobe seizures.
However, temporal lobe seizures are more likely to spread and result in a convulsion when beginning during sleep, while frontal lobe seizures are not.
This discovery could have implications for treatment if better understood.
That’s the good news.
Unfortunately, nocturnal seizures are difficult to diagnose.
Video-EEG recordings can help. Or a CT scan. There’s also the MRI, a record or diary of your seizure activity.
You might want to keep your own diary. Like with the the Seizure Tracker app. https://seizuretracker.com/
Or wear a seizure monitor like a smart watch like…
The Apple SeizAlarm — It’s a user-friendly iPhone and Apple Watch app which allow you to alert emergency contacts automatically when seizure-like motion is detected, or manually if you need immediate help or think you might need help soon. It detects seizure-like motion, requests immediate help, seizure monitoring control, GPS location tracking, and event log tracking.
Embrace — Which was created to track your activity, stress and overall body balance, enabling you to put out an alert when an unusual event happens such as a convulsive seizure, warning you and and your loved ones.
The SmartWatch — A motion detecting and alerting wristwatch that can detect seizures and alert caregivers within seven to 10 seconds.
It doesn’t exactly take the fright out of nighttime seizures. But a little comfort goes a long way.
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Resources:
https://www.medicalnewstoday.com/articles/326864
https://www.healthline.com/health/epilepsy/nocturnal-seizures
https://www.sleepfoundation.org/physical-health/epilepsy-and-sleep
https://www.cedars-sinai.org/health-library/diseases-and-conditions/n/nocturnal-seizures.html
https://www.ajmc.com/view/epilepsy-and-sleep-defining-the-relationship
https://epilepsysociety.org.uk/about-epilepsy/epileptic-seizures/seizure-triggers/sleep-epilepsy
https://www.empatica.com/blog/am-i-having-seizures-while-sleeping.html
https://www.medicalnewstoday.com/articles/319430#Snug-Safety
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Epilepsy Talk 
Reblogged this on Disablities & Mental Health Issues.
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Comment by Kenneth — September 6, 2022 @ 12:51 PM
Thanks for the brilliant article, describing my own seizures more than I can.
While I’m NOT so much concerned about my seizures taking place in my bed while I’m sleeping at home in my own comfort zone, I feel tormented to find out about my nocturnal seizures taking place in public places when the whole world is watching what’s happening to me & I’m NOT even aware of it, neither can I do anything to stop it.
Just last week, I had another of my nocturnal seizure in my neighborhood store with all of the ramifications you described in this article.
The store owner thought I was having heart attack & was kind enough to understand that I was having medical problems he never saw me having one before.
The store owner describing my condition the next day, I was totally humiliated to find out what’s happening to me in front of the people I had known in good terms.
While technology may help resolve some of my concerns in warning stages of my seizures, the unpredictable nature of the seizure attack makes it difficult to stay alert & conscious during the seizures to avoid the humiliating experience of going through the nocturnal seizures.
Again, thank you for your hard work in researching & sharing your informative article when I needed it the most.
Gerrie
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Comment by Gerrie — September 6, 2022 @ 2:04 PM
Oh wow, Gerrie! I’ve never had a nocturnal seizure in public. Just in the “peace and quiet” of my own bedroom.
It’s embarrassing enough when you’re alone. Not exactly a “spectator sport”! 😥
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Comment by Phylis Feiner Johnson — September 6, 2022 @ 2:48 PM
Just curious, but what definition of nocturnal are you using? I am assuming, but could be wrong, that the seizure in the store happened during the day.
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Comment by Hetty Eliot — September 6, 2022 @ 6:38 PM
Yes Hetty, Having Doctor’s appointment in that particular day early in the morning, I didn’t get to sleep much of the night & got up early to make it to the Doctor’s appointment on time using public transportation, therefore I deprived myself from having enough time to rest.
As soon as I made it through the Doctor’s appointment & made it back to my neighborhood, I can feel my auras flood like a storm & smell like burning tire.
All of a sudden, I lost consciousness & ended up having a seizure with all the ramifications described in this article.
While I was NOT aware of what happened in that event, the store owner describing my condition made sound like horrific experience.
Reading the faces of the store employees, it still remains humiliating experience to walk in to the same store I had been shopping for 13 years.
Gerrie
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Comment by Gerrie — September 7, 2022 @ 3:55 AM
Oh, I don’t believe you should feel humiliated! It sounds like they were probably just really scared and concerned to witness it happening to someone.
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Comment by Hetty Eliot — September 7, 2022 @ 1:54 PM
I’m wondering if nocturnal seizures might be triggered by hormones; i.e. fluctuations in melatonin.
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Comment by HoDo — September 6, 2022 @ 7:15 PM
BINGO! If nocturnal seizures are triggered during certain stages of sleeping and waking…and melatonin regulates sleep/wake cycles…I think we have a match.
And, if melatonin is a hormone that your brain produces in response to darkness…and hormones influence sleep patterns…hmmmmmm…we might have a match.
What do you think HoDo?
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Comment by Phylis Feiner Johnson — September 6, 2022 @ 10:00 PM
Just guessing, since an assortment of hormones are implicated in an assortment of seizures. Could be too much suddenly, or (if you have insomnia) an abrupt cutoff. Lots of possibilities.
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Comment by HoDo — September 6, 2022 @ 10:12 PM
YES!!!
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Comment by Phylis Feiner Johnson — September 6, 2022 @ 10:22 PM
Try https://pubmed.ncbi.nlm.nih.gov/23532506/ for melatonin. There are also papers on stress hormone fluctuation, insomnia, and seizures.
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Comment by HoDo — September 6, 2022 @ 10:24 PM
Phyllis thanks for the nice article that describes some of my seizures that also occur at night. The slightest disturbance of sleep, for example to go to the toilet, wakes me up and starts a wakefulness associated with tension, fear and everything sticks like a ball in the throat. I have a very hard time falling asleep, but until I take some kind of sedative, it can’t happen. But falling asleep occurs in the morning before waking up, and the new attack is real. That’s why I struggle when I fall asleep to wake up in the morning.
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Comment by Goro Dimitrov — September 7, 2022 @ 8:56 AM
Awesome topic that needs some attention – written up or spoken about.
I know that in my Epilepsy Foundation Coffee Conversation Support Group there is almost an assumed safety net that it is a safe setting to talk about nocturnal seizures, especially when it comes to all of those unpleasant outcomes you listed. I have even gone as far as to take pictures of my bitten tongue, especially when my face was covered in blood and shown those cell phone pictures to the group.
Some of the younger members of the group are so relieved to know that some of the older members – I’m in my 50’s – fall out of bed, pee on themselves, etc …
It helps reduce some of the embarrassment. (As if having epilepsy isn’t hard enough?)
I always describe my nocturnal seizures (tonic-clonic) like waking up with a horrible hangover after having lost a fight. I just felt awful and was afraid to go back to sleep, because the ONLY pattern to my seizures was that they occurred in my sleep. And I have a seizure diary to prove it.
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Comment by George — September 7, 2022 @ 2:48 PM
It also occurs to me that one of my neurologists said that sometimes in seizures accompanied be an affect, such as fear, that the affect is not in response to the seizure but is part of it. For example, neurons comprising fear and neurons comprising seizure fire at the same time rather than one causing the other.
Knowing this makes it easier to wait out the emotion.
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Comment by HoDo — September 7, 2022 @ 5:09 PM
So which comes first, the chicken or the egg? Is it a self-fulfilling prophecy?
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Comment by Phylis Feiner Johnson — September 7, 2022 @ 5:12 PM