Sleepless nights. Exhausted afternoons. Confusion. Memory loss. Trouble with concentration, mood swings and of course, seizures.
Which may increase in frequency or severity. Or even contribute to intractable seizures.
It seems like an endless cycle.
For people with epilepsy, sleep problems are a double-edged sword; epilepsy disturbs sleep and sleep deprivation aggravates epilepsy.
Plus, the drugs used to treat epilepsy may also disturb sleep.
Studies have shown that approximately 70% of patients with epilepsy experience problems with sleep.
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).
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.
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.
This is especially true for Benign Focal Epilepsy or Rolandic Epilepsy.
When seizures occur during sleep, they may cause awakenings that are sometimes confused with insomnia.
Epilepsy patients are often unaware of the seizures that occur while they sleep.
They may suffer for years from daytime fatigue and concentration problems without ever knowing why.
Conversely, in the case of Juvenile Myoclonic Epilepsy, seizures rarely or never happen when sufficient sleep is obtained.
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.
Despite this, many physicians overlook the potential for treatable causes of sleep disruption in patients with epilepsy.
And the outcome is that optimal sleep may not be achieved.
Here are some specific epilepsy disorders that are closely related to sleep seizures…
Frontal Lobe Epilepsy
Temporal Lobe Epilepsy
Juvenile Myoclonic Epilepsy
Epilepsy with Generalized Tonic-Clonic seizures on awakening
Rolandic Childhood Epilepsy with centrotemporal spikes
Interestingly, people progress through different stages of sleep.
Most sleep seizures begin during the lighter stages, 1 and 2, and usually happen first upon falling asleep, accounting for about half of the total sleep time.
These are times during which the electrical activity of the brain is more synchronized (rhythmic), which is why scientists believe that seizures are more likely to begin during these states.
By contrast, few or no seizures begin during REM sleep, (rapid eye movement, when you have the most vivid dreams).
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.
(Video-EEG recordings can assist with the correct diagnosis.)
But, the most troublesome sleep disorder in people with epilepsy is sleep apnea, in which breathing stops briefly during sleep.
Sleep apnea affects at least 2% of the general population. But it’s about twice as common for those with poorly controlled epilepsy than in the general population.
As sleep deepens, the airway becomes blocked.
The brain recognizes the resulting lack of oxygen, and the person wakes up (usually with a loud snore) and begins to breathe again.
Often the person does not remember waking up, but this cycle is repeated all night long and normal sleep is never achieved.
Therefore the person is drowsy most of the time and may be at risk of falling asleep during activities like driving.
It’s especially important to recognize and treat sleep apnea if you have epilepsy.
Not only can the lack of sleep make your seizures worse, so can the lack of oxygen getting to your brain during sleep.
You may continue to have seizures (particularly during sleep) even if you take seizure medicines that would otherwise be effective.
The good news is that both your drowsiness and seizures should improve if the sleep apnea is treated.
Sedating AEDs may benefit epilepsy patients with insomnia, and stimulating AEDs may benefit epilepsy patients with daytime sleepiness.
Phenobarbital and Klonopin can actually be used as sedatives. Lamictal may cause difficulty falling asleep. (It made me crazy hyper!) Felbatol, may cause insomnia. And medications like Dilantin, Phenytek, Tegretol or Carbatrol decrease REM sleep and therefore may contribute to memory problems.
Other seizure medicines, such as Neurontin and Depakote are thought to have little effect on sleep. And the jury is still out on some of the newest medications, like Trileptal, Keppra and Zonegran.
So what about sleeping pills?
Well, it depends upon your body chemistry. (And your state of mind.)
Some people tolerate sleeping pills very well. Others become addicted.
The party line is that almost no sleeping pill should be used for more than two or three weeks.
Particularly drugs of the benzodiazepine class, such as Xanax, Valium and Ativan, along with Halcion and Restoril.
Although how Restorial can be considered a sleeping pill is beyond me.
I threw up all night and got zero sleep. So everyone is different.
Which leads back to the merry-go-round of drugs.
To sleep or not to sleep? To seize or not to seize?
I’m tired of this merry-go-round. (I bet you are, too.)
I want to get off. And take a nap.
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Resources:
https://www.ajmc.com/view/epilepsy-and-sleep-defining-the-relationship
https://www.sleepfoundation.org/articles/epilepsy-and-sleep
https://www.healthline.com/health/epilepsy/nocturnal-seizures#sleep-seizures
https://www.epilepsy.com/learn/triggers-seizures/lack-sleep-and-epilepsy
https://www.epilepsynorcal.org/wp-content/uploads/2015/07/Sleep.pdf
https://epilepsysociety.org.uk/sleep-epilepsy
https://www.empatica.com/blog/am-i-having-seizures-while-sleeping.html
HoDo, please look in your spam file for my email or call me at 610-517-7576.
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Comment by Phylis Feiner Johnson — April 21, 2021 @ 11:18 AM
Reblogged this on Disablities & Mental Health Issues.
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Comment by Kenneth — April 21, 2021 @ 11:42 AM
Thank you so much for this post. It is so comforting to hear thatt my sons sleep issues are “normal”. I feel like the Doctors told us nothing of what to expect and we have to figure everything out ourselves. If anyone has any natural ideas for this issue I would love to hear. We have tried Cranio sacral therapy, and other things that do help . We tink that melatonin may have cause him aseizure b/c it induces the sleep to quickly.
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Comment by Malka Kornreich — April 21, 2021 @ 11:50 AM
Malka, 10MG of Melatonin does work for me and sends me right off to sleep. That’s not to argue that it doesn’t work for your son.
On the other hand, here are 12 Sleep Tricks https://epilepsytalk.com/2019/06/04/12-sleep-tricks/
Hope this helps!
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Comment by Phylis Feiner Johnson — April 21, 2021 @ 12:54 PM
Something I tried 3 years ago worked: Turn off T.V. or computer 1 hour (or more) before bedtime and 40 min. before sit and write down whatever is on your mind….I forgot to do all laundry but I cleaned the kitchen counter; I finished reading homework; I did whatever or didn’t for 20 minutes, so all this won’t be on your mind when you lay down. I kept the note book and read it several years later. Now I can sort of turn off all those thoughts so they don’t encompass my mind and do some deep breathing. Same time to go to sleep and awaken. I’m sure this will help.
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Comment by Leon Chavarria — April 21, 2021 @ 2:27 PM
Brilliant. I always have such stupid little things jiggling on my mind when I’m trying to get ready for sleep.
Even though they have been delegated to a list, obligations dance through my head.
But not just obligations. Sometimes article ideas come out of the blue.
I don’t want to lose them or trudge down the hall to my office. So I keep a pen, pencil and penlight my bedside.
That way not anything is lost and I wake up a happy camper!
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Comment by Phylis Feiner Johnson — April 21, 2021 @ 3:08 PM
My seizures were of the exclusively nocturnal temporal lobe variety. They always happened in the early morning hours just before I would have been getting up anyway.
Having a sleep related disorder like this is a spiral. I can’t get to sleep because I am afraid I’m going to have a seizure so I get sleep deprived which causes more seizures and around we go.
Your previous post on cannabis ties in nicely here. It can be a way out of this spiral for many people without turning to chemical sedatives and all of the addiction and side-effects dangers that come with them.
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Comment by paleobird — April 21, 2021 @ 12:10 PM
I’d prefer cannabis over sleeping pills, too. That’s what Arthur is leaning towards
Weaning off of Xanax and moving over to cannabis instead.
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Comment by Phylis Feiner Johnson — April 21, 2021 @ 12:48 PM
I like this article. All my life, I’ve been wondering if any of my seizures happen at night? After reading this, no, I don’t; I don’t ever feel tired in the morning. The majority of my seizures happen between 2 PM and 5 PM. After I learned the news in this writing, I have questions for my doctor. One of those is if I should be taking any medicine at about 12 noon? Many years ago, my medicine was prescribed 3 times a day. I still had seizures. Now, I wonder if I would be healthier if I took some medicine in the middle of the day?
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Comment by whittemore1958 — April 21, 2021 @ 7:01 PM
GOOD question. When I started Lamictal, I was crazy/hyper. Then I changed my bedtime dose to 6:00 PM and I settled down. The end result, 10 years, 99% seizure-free. I can only wish the same for you.
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Comment by Phylis Feiner Johnson — April 21, 2021 @ 11:06 PM
My son has had E since he was 7 and he started with very small staring episodes they called auras. At 13 they progressed to partial and then at age 16 to full seizures in his sleep. He was well controlled on Trileptal for years but that couldn’t control the full seizures in his sleep so he went on Dilantin which for 3.5 years has worked really well. He takes 200 in the am and 300 in the pm (slow release). Until 2 weeks ago, he had a partial in his sleep so they added a small dose of Klonapin. Then today when he and I were talking (about a stressful situation at college) he had a short 10 sec partial. First one of these in years. My heart is sinking as I thought he was done with all of this.
Now what? Anyone out there experienced this before? Is it bc of a growth spurt? He has gained 13 lbs and another inch of height, almost 6’5” and he will be 21 in a couple of months? Is it hormones? Brain changes? Stress?
Help.
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Comment by Tami — April 25, 2021 @ 10:47 PM
what about going the thrapy routs, it seems to me the “stressful situation” at college set it off.We have a had alot of improvement for my 20 yr old son who went through many traumas , through energy healing and alternative therapies. It does not sove the whole problem, but it does make a huge differance.
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Comment by mara lynn — April 26, 2021 @ 2:47 AM
Tami, I think it could be a matter of metabolism.
It may be the dose prescribed…the type of epilepsy he has…even something as simple as his age or weight.
Perhaps it’s because his metabolism has built up a tolerance to a drug. And ramping up the dosage can work.
Further, patients may acquire a tolerance to some effects of a particular drug, but not all.
I hope this helps, Tami.
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Comment by Phylis Feiner Johnson — April 26, 2021 @ 10:47 AM
Thank you for sharing. I suddenly began having seizures in 2012, now on my 3rd neurologist, still no answers. I’ve been doing my own research & keeping a medical journal, but have felt so alone. Not wanting pity, but for “friends” to understand the struggle w/ memory loss, concentration ,etc when they think I’m not listening or don’t care because I forget details of the things they share with me. I’ve had to learn to use the internet & technology recently w/ the help of my grandson to see who else out there shares similar experiences.
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Comment by 5thgenerationgirl — April 26, 2021 @ 9:35 PM
Welcome! We’re glad you’re here for whatever reason.
I think you’ll find Epilepsy Talk to be a font of information, along with some of the most caring, compassionate, generous people on the planet.
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Comment by Phylis Feiner Johnson — April 27, 2021 @ 8:38 AM