Epilepsy Talk
The fears of nocturnal seizures… | December 11, 2023
Fear. Screaming. Visions. Bright lights flashing. Hallucinations. Tongue biting. Pain. Paralysis. Pins and needles. Bed wetting.
Do any of these sound familiar?
One person described it as: “During the nightmares, I often get up and run out of the room screaming while still asleep, as if something is chasing me.”
It’s agony. And there’s little to explain it or stop it in its tracks.
Not surprisingly, studies have shown that 10 – 45% of people with epilepsy have seizures that occur predominantly or exclusively during sleep or occur with sleep deprivation.
Interruption in REM (Raid Eye Movement), is the culprit. Because sleep terrors occur in slow waves — the first step of sleep and the last third – cause those night terrors.
Nocturnal seizures are not likely to occur in the middle of the night. They usually appear shortly after you’ve fallen asleep or just before waking up.
Some people have seizures occur only during sleep while others have both daytime and nocturnal seizures.
As you can guess, regular sleep habits are important, especially for those with sleep related seizures. Seizures may be triggered by missing sleep or sometimes even by getting too much sleep.
But if you’re worried that you might have a seizure during the night, it can be all that more difficult to sleep.
I know that my instinct was trying to stay awake to keep those horrible experiences at bay. (I used to try to tear out my hair.)
But if you’re afraid of going to sleep, then the whole cycle begins again.
Because insufficient sleep can lead to increased seizure activity, making the problem worse.
And if no one is around, you could be in danger.
Sometimes the tendency toward seizures in sleep may be reduced by increasing the evening dosage of anticonvulsant medication.
If the seizures occur with falling asleep in the early evening, the supper dosage may be increased.
If they tend to occur in the early morning around the time of awakening, the approach may be to increase the bedtime dosage of medication or to use a longer acting anticonvulsant or a time release capsule.
(I’m a fan of longer acting meds because they make me feel more secure. But, that’s only me.)
Another idea is to buy a seizure monitor to help alert you of nocturnal seizures as soon as they occur.
The MP5 Convulsive Seizure Detector Single Sensor Alarm is the most popular seizure monitor with over 6,000 monitors in use worldwide.
(I know, the name is scary and awful.)
A sensor is placed between the bed base and the mattress. When a seizure begins, the muscular convulsions are detected by the bed sensor.
All models feature an adjustable delay control, used to allow a certain amount of movement before an alarm is generated.
The bed sensor sensitivity level can be adjusted to compensate for patient weight, type of bed base and mattress type.
In my case, the seizures themselves awoke me. For you, different meds or schedules could be the answer. Or another person present.
Whatever route you choose, I hope it works.
As they say: “There’s nothing better than a good night’s sleep.”
Don’t we know it!
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Resources:
http://epilepsyontario.org/about-epilepsy/types-of-seizures/nocturnal-seizures/
https://www.healthline.com/health/epilepsy/nocturnal-seizures
https://www.cedars-sinai.edu/Patients/Health-Conditions/Nocturnal-Seizures.aspx.
http://www.sciencedirect.com/science/article/pii/S0361923004000887
Tags: anti-seizure medication, nightmares, REM, seizure monitor, sleep deprivation
6 Comments »
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Epilepsy Talk 
Phylis – thanks for tackling such a painful (literally) topic. Nocturnal seizures are all that I have now. My epileptologist put me on the generic of Klonopin, along with my genetic of Lamictal. We’ve agreed to experiment after almost 10 years of no relief. They worked after 20 different combinations of anti-seizure medications and the two “lastest and greatest” new medications that still provided no relief. (He didn’t agree to it professionally, but I’m going the “herbal way” and wean myself off of the Klopin and see what happens.)
You’d think I would be absolutely thrilled by having no seizures for FOUR months … but that highest dose of the generic of Klonopin has made me feel so rundown. It has come down to this – seizures or side-effects. (So many of us have heard this before).
Nocturnal seizures are so degrading. For me, the worst of these noctural seizures is waking up on the floor: bloody cheeks, a bitten tongue, bitten lips, and having lost control of my bladder. It then goes further than that. Sometimes my friends who have very little of knowledge of epilepsy will say, “why don’t you just stop?”
The only way I can describe nocturnal seizures are that it feels like I’ve been in a fight and have a hangover. George
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Comment by George Choyce — December 11, 2023 @ 11:25 AM
George, you’re so brave. Despite getting beat up every time, you maintain your persistent attitude, and try to take charge of a difficult situation.
I also take Lamictal and Klonopin, but in small doses. But I find that it does help, without the hated hangover.
I also supplement with Melatonin. Have you tried/considered that?
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Comment by Phylis Feiner Johnson — December 11, 2023 @ 11:40 AM
The best nocturnal seizure sensor ever invented was my service dog. He could wake me in time that I could make the seizure stop. He has passed away unfortunately and now I don’t qualify for a seizure alert service dog because I have cured my epilepsy.
George, have you looked into ketogenic diets?
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Comment by paleobird — December 11, 2023 @ 2:35 PM
♥️
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Comment by Phylis Feiner Johnson — December 11, 2023 @ 4:07 PM
My
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Comment by Paula J Bennett — December 11, 2023 @ 3:22 PM
I had my first nocturnal seizure when I was 29. The last nocturnal gran-mal seizure I had was in 2023. Scared my husband he had never seen any one have a seizure. Our max cat alerted him that something was going to happen to me in advance.
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Comment by Paula J Bennett — December 11, 2023 @ 3:27 PM