Epilepsy Talk
Sleep and seizures…at what cost? | August 30, 2021
Sleepless nights. Exhausted afternoons. Confusion. Memory loss. Trouble with concentration, mood swings and of course, seizures.
Which may increase in frequency or severity. Or may 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 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://pubmed.ncbi.nlm.nih.gov/12609319/
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
17 Comments »
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About the author
Epilepsy Talk 
Well stated. I have dealt with sleep issues since childhood (since about 1970).
The hours of horror I used to call them. Wake up 6 to 8 times every night.
Diagnosed with Temporal lobe epilepsy.
What helps (me);
A. Naps around 1 to 3 pm. It helps/sleep soundly.
B. Diet (mostly vegetarian), H2O daily, limit caffeine…ugh. **Fiber is a friend of mine. Fruits too. Very few sweets…ugh.
C. Daily *sensory awareness and body movement exercises. Also *breathing exercises so I don’t clench my jaw. Hand, eye, foot, circles (ie dance mvmt).
D. Acceptance that most people mean well, BUT have no clue what it’s like to Walk the Earth with Epilepsy. My body and senses speak to me.
Music therapy really helps me get out of my mind. I have to relax, breath, listen, use both my hands, And usually only have to count to four (notes or chords)…Whew!!
Plus, there’s always one or two notes or chords to help 🙂🎸🎵.
Peace and calm to all of you!!
Robert
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Comment by Robert Stroud — August 30, 2021 @ 11:36 AM
Robert, fabulous input and advice.
I know that I do breathing exercises and muscle relaxation, am quasi-vegetarian (just fins and feathers), and play soothing music for therapy (different than your music therapy), through the night.
I guess I’m on the same page…almost! 😉
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Comment by Phylis Feiner Johnson — August 30, 2021 @ 12:09 PM
I have occipital lobe epilepsy and have seizures only while sleeping. I was diagnosed with chronic fatigue syndrome before being diagnosed with OLE. I wonder just how accurate the CFS diagnosis is. I also have mild sleep apnea.
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Comment by Michelle's Musings — August 30, 2021 @ 11:50 AM
Michelle, it could be nocturnal seizures.
Nocturnal seizures mostly occur just after a person has fallen asleep, just before waking, during daytime sleep, or while in a state of drowsiness. People who experience nocturnal seizures may find it difficult to wake up or to stay awake, yet they are unaware of having had a seizure while asleep.
These articles may be useful:
Ever Had a Seizure in Your Sleep? https://epilepsytalk.com/2021/02/13/ever-had-a-seizure-in-your-sleep/
Epilepsy And Sleep Apnea — A Dangerous Duo https://epilepsytalk.com/2019/06/02/epilepsy-and-sleep-apnea-a-dangerous-duo-2/
I hope this helps…
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Comment by Phylis Feiner Johnson — August 30, 2021 @ 12:28 PM
Klonopin is a benzodiazepine
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Comment by Barbara — August 30, 2021 @ 1:01 PM
The best sleep aid I have ever found is edible cannabis. All of the sleep benefits of narcotics without the hangover or addiction issues. Edibles stay with you through the night unlike smoking or vaping which have their own health concerns.
Also, caffeine is not a friend for anyone with epilepsy but especially for people with nocturnal seizures. It’a a hard habit to break but worth the effort in better sleep.
Also you absolutely must lose all sugar and all booze. It’s tempting to use booze as a sleep aid but it is not a good idea. It may help you get to sleep but later in the night it disturbs your sleep.
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Comment by paleobird — August 30, 2021 @ 4:13 PM
About the edible cannabis…that’s invaluable information. My husband (who has a nerve pain problem) has tried everything EXCEPT edibles. Except once when a friend from NYC brought gummies.
They were terrific, but edibles are against the law in Pennsylvania. (They think some little kid is going to raid or get into the cannabis stash.)
Anyway, I do have a recipe for gummies, but it’s very complicated. And I’m no chef whiz. But maybe if I tried some baked goods, like cookies it would work???
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Comment by Phylis Feiner Johnson — August 30, 2021 @ 5:27 PM
I just happened to read some very interesting article in the local magazine about CBD products the FDA approving EPIDIOLEX in 2018, as treatment for certain kinds of seizures.
Therefore, I wonder if the CDB product could be helpful in resolving the chemistry behind the epileptic seizures, provoked by sleep disorders?
Gerrie
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Comment by Gerrie — August 31, 2021 @ 6:25 AM
I wonder if this ever happened to me. (I have focal epilepsy.) Back in the day, I would wake up frequently and feel like a Mac truck ran me over when I got up in the morning. Gabapentin fixed that (I was prescribed it for back pain, I didn’t know about epilepsy then) and then I moved to lamotrigine when diagnosed with epilepsy, so who knows. Something did happen to me one night less than a year ago, I went to sleep much later than normal, and I was wired from listening to music. Twenty minutes after dozing off, I woke up experiencing what felt just like when having a seizure pre-diagnosis. But my doctor just dismissed it 😦
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Comment by Hetty Eliot — August 30, 2021 @ 6:24 PM
And can nocturnal focal seizures cause you to bite your tongue? I never had motor symptoms, but I had quite often in the past woke up with my tongue very sore. The dentist noticed bite marks on it the last time I got my teeth cleaned. Sometimes it wakes me up. Oh, who knows????
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Comment by Hetty Eliot — August 30, 2021 @ 6:26 PM
Nocturnal seizures are like thieves in the night. They come when you least expect them. And sometimes they leave when you don’t even know they were there, save for a bitten tongue, loss of bladder control or a plain old lousy mood.
They might occur just after you have fallen asleep, just before waking, during daytime sleep, or while you’re in a state of drowsiness. And you may find it difficult to wake up or to stay awake.
(That about covers all bases, doesn’t it!)
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Comment by Phylis Feiner Johnson — August 30, 2021 @ 11:13 PM
There needs to be a list of drugs & foods, drinks too, that can make brain chemistry unstable 24/7 even as you may sleep good the brain sleep mode for me never is sound every night. I know what you see on TV the MY PILLOW HAS HELPED my sleep, but not to the limit where my sleep pattern is totally different due from the seizures that I am more then less likely to have every season. After a GRAND MAL takes place & is over, I sleep good for up to at least 3 weeks, then the sleep pattern becomes less hours per night & stays like that until my next seizure, then for 3 to 5 weeks I may sleep better again & in less than 2 months another GRAND MAL happens. The EXCITITORY nerve endings, cells & neurons needs to be treated to the treatments of helping all INHIBITORY nerve endings, cells & neurons to be more increased in the brain & multiplied more by all I can tell from eliminating MSG’s, ASPARTAME’s, METALS, & other ”excitotoxins” by keeping them out & away from all brain chemistry & brain activity, where – negative actions from BAD TOXINS & CHEMICALS from MSG, ASPARTAME, NITRATES NITRITES, METALS & alike, where seizure activity can easily make seizures happen more & sleep happen less with the patterns from how AED’s & FOODS where toxins are in BOTH, ”can make sleep happen less & seizures happen more”. This is REALITY for most of us, as most if us never even sees it happen, because they never look for the reasons of why some have less sleep & more seizures, being from everything we digest. 2 weeks ago my doctor saw how NITRATES & NITRITES made a GRAND MAL seizure happen, & yet I am never HOW it all happens, over time when I tried again to have 1 more seizure eating the same food & no seizure happened. Does not mean that food toxins are not the problem, when the brain chemistry may have to be at a certain level of some way, where seizures will or are going to happen over time, which makes & calls for MORE ATTENTION to this serious root cause, that people just cause a trigger, when it is more serious than that.
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Comment by James D — August 30, 2021 @ 8:57 PM
I have only one way of telling sleep had something to do with my seizures. When I was getting only two hours of sleep a day while I was having a VEEG, the lack of sleep the first five days led to the strongest seizure I can remember. I know it took two male nurses and a third nurse to keep me under control. The next morning as my kids came to pick me up, I had another one just as bad. In between, they told me I had a nocturnal seizure but I didn’t know I ever had one before if I did.
A brief change of subject if you don’t mind: Sleep isn’t as easy after surgery. A good night’s sleep to me is waking up less than 5-6 times that night and sleeping seven hours or more.
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Comment by Ed Lugge — August 31, 2021 @ 3:46 PM
Do you take anything to sleep? Like Melatonin, which is a natural supplement.
“Melatonin is a hormone made by the pineal gland. That’s a pea-sized gland found just above the middle of your brain. It helps your body know when it’s time to sleep and wake up.
Normally, your body makes more melatonin at night. Levels usually start to go up in the evening once the sun sets. They drop in the morning when the sun goes up. The amount of light you get each day — plus your own body clock — set how much your body makes.
You can also buy melatonin supplements. They come in pills, liquids, and chewables. You might find them in natural or synthetic forms. The natural forms are made from the pineal gland in animals.”
https://www.webmd.com/sleep-disorders/what-is-melatonin
I take 10 MG before I sleep and am in dreamland shortly after.
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Comment by Phylis Feiner Johnson — August 31, 2021 @ 4:55 PM
Worth a try.
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Comment by Ed Lugge — August 31, 2021 @ 5:08 PM
Almost to much imfo. and interesting this would not read the same even 10 yrs ago.It also shows me I need to begin learning again. Have had szs in my sleep for 28 yrs.the patterns have changed a few times,you explain it better than I could.they were right before my first rem cycle,so the exhaustion “crash” meant I could sleep and wake up and still work. it changed to right before I woke up and that crash means I slept for 6-10 more hrs and began time,sleep cycle that just brought on more szs from lack of sleep.
I quit fighting this “revolving door” and became more of a night owl. I read this and comment now because this is now my no.one problem,if I miss a dose of keppra and have 3 back to back szs the recovery from this can take 2 weeks,and that is if I have not broken anything or cut myself. I am taking 1/2 doses of klonipan now and is a huge help,but also addictive,had been a long time but will start on melotonin again. thanks again Rick
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Comment by wichitarick — September 20, 2021 @ 6:47 PM
Nocturnal seizures can be pretty stealthy.
Some people don’t know if they’ve had one unless they wake up with a chewed tongue/mouth or on the floor.
Did anyone every suggest a sleep study, so you really knew what was going on?
Melatonin is a good idea. I take 10 MG before bed and sleep like a dream.
I’ve also taken Klonopin for years, without any negative consequences.
I think it comes down to whether you have an addictive personality, which happily I don’t.
That’s just my experience. Everyone is different, as you know.
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Comment by Phylis Feiner Johnson — September 21, 2021 @ 10:03 AM