Epilepsy Talk

Sleep and Seizures — How Much is it Costing You? | May 26, 2019

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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  1. Thank you for another very informative post.

    Liked by 1 person

    Comment by Douglas Lee-Murray — May 26, 2019 @ 12:01 PM

  2. I hope you found it helpful!


    Comment by Phylis Feiner Johnson — May 26, 2019 @ 12:09 PM

  3. As we said on another thread, medical cannabis is the best sleep medication ever. Deep restful sleep and no morning grogginess.
    With its help I have gotten completely off of Valproic Acid and I am working on titrating back on the phenobarbital.
    My seizures were always exclusively nighttime and I think you make an important point about sleep apnea being a big factor. I have lost a bunch of weight with my keto/carnivore diet and I think that has really helped.

    Liked by 1 person

    Comment by paleobird — May 26, 2019 @ 12:44 PM

    • Keto and medical marijuana, how can you lose?

      Especially when it helps you titrate off your meds.

      The best of both worlds, my diligent, persevering friend.


      Comment by Phylis Feiner Johnson — May 26, 2019 @ 3:01 PM

  4. I take a nap mid afternoon when possible (delta waves) and it helps!

    Liked by 1 person

    Comment by Pete — May 26, 2019 @ 1:59 PM

  5. Thank you. Very helpful.
    Thank you for your posts- I’m 57 and have had epilepsy since I was 11- fortunately pretty much under control, thanks to sodium valproate ( Epilim)I lead a full and active life, travel the world in my retirement, and try not to let epilepsy define me. Did get some counteractions a few years back when I had breast cancer- the steroid treatment as part of chemotherapy didn’t mix well with the Epilim- but apart from that I’m fine. Incidentally, I’m in the UK and I haven’t had any review of my epilepsy or medication for over 25 years- including no info on impact of epilepsy during pregnancy ( my son is now 29, thankfully well!). Your posts are really informative. Thanks again


    Liked by 1 person

    Comment by Sue — May 26, 2019 @ 4:26 PM

    • Wow, you’ve been unattended for over 25 years?

      Good thing Sodium Valorate worked for you.

      What would have happened if it didn’t?

      That’s scary.

      Glad you are prospering and doing so well — with a healthy 29 year-old son.

      Bless you!


      Comment by Phylis Feiner Johnson — May 26, 2019 @ 8:09 PM

  6. This was interesting and informative.

    Liked by 1 person

    Comment by Flower Roberts — May 26, 2019 @ 4:50 PM

  7. Thank you! This is very interesting. I have occipital lobe epilepsy and most of my seizures are as I am falling asleep and awakening. I have myoclonic seizures during the day when fatigued. I have been diagnosed with ME/CFS and sleep apnea. I also have severe hot flashes which do not help my sleep deprivation. I have found that if I keep my sleeping area very cold and pile on the blankets, I get a much better night’s sleep.

    Liked by 1 person

    Comment by Michelle's Musings — May 26, 2019 @ 9:55 PM

    • Wow, what a contradiction of terms.

      Hot/cold, comfort, discomfort.

      But, it’s good that you’ve found some sort of solution.


      Comment by Phylis Feiner Johnson — May 27, 2019 @ 9:50 AM

  8. Might there be a relation between hormonal activity during the night and seizures and what looks like insomnia?

    Your newsletter makes me feel, finally, that I am not alone. A thousand thanks!

    Liked by 1 person

    Comment by Gretchen Herbkersman — May 27, 2019 @ 12:31 PM

    • Well gee, I know my night sweats certainly feel like an aura going on. And they sure do keep me up…for hours.

      Other than that, I know I’ve had nocturnal seizures, but that was much earlier, when I was younger.

      I don’t know if that helps answer your question or not.

      But, I’m so glad you’ve found us Gretchen, and we’re always here for you!


      Comment by Phylis Feiner Johnson — May 27, 2019 @ 12:43 PM

  9. Sleep was tricky for me over the years of seizures. Mine came from the left temporal lobe & happened often in my sleep. My hubby was terrified because I wouldn’t breathe during my seizures. Everything changed after brain surgery, and sleep became drastically better. Taking melatonin now which helps! Hoping there is further study on this, and thank you always for your research!!

    Liked by 1 person

    Comment by Suzanna — May 27, 2019 @ 3:01 PM

    • I take 10 MG of Melatonin if I can’t sleep.

      In fact, melatonin is one of the most commonly used supplements in the United States. (Lots of sleepless people out there!)

      Scientifically speaking, melatonin is a hormone synthesized from serotonin, the “feel good” hormone.

      It’s secreted from the pineal gland (a pea-sized gland, near the center of your brain) over an exact 24-hour cycle.

      This cycle is an important part of our circadian rhythm, the system that regulates numerous body functions over a twenty-four hour cycle, the most obvious of which is the sleep / wake cycle.

      Around bedtime, melatonin rises, so you feel sleepy. Then the secretion of melatonin falls during the night, and by morning, levels are low.


      Comment by Phylis Feiner Johnson — May 27, 2019 @ 5:58 PM

  10. Some epilepsy types, like Nocturnal Frontal Lobe Epilepsy (NFLE) recently renamed as Sleep-Related Hypermotor Epilepsy(SHE) cause seizures which can be exclusively while you are asleep.

    If daytime seizures are not prominent, the sufferer may have no clue that epilepsy is to blame.

    They have identified Genetic markers that are autosomal-dominant(AD), which means if a parent has ADNFLE, that their children have at least a 50% chance of also having it. (70%+ chance if both parent have it.)

    It also exhibits incomplete penetrance, which means that the symptoms, like the severity of the seizures, are not the same for everyone who has it, even in the same family.


    Liked by 1 person

    Comment by Sleep Soldier — May 28, 2019 @ 1:42 PM

    • Wow, Sleep. (Is that a pun?)

      Fascinating info. Especially about the genetic markers. A little scary, a lot illuminating.


      Comment by Phylis Feiner Johnson — May 28, 2019 @ 4:00 PM

  11. Any info on Dilantin case

    Liked by 1 person

    Comment by Kevin — June 4, 2019 @ 5:51 AM

  12. Kevin, this link may help:

    Dilantin — What People Are Saying…



    Comment by Phylis Feiner Johnson — June 4, 2019 @ 9:38 AM


    Liked by 1 person

    Comment by fnaf toy kitty — June 17, 2019 @ 7:23 AM

  14. I’m depressed, low after my seizure s and yet I do not get any financial supp only GRIEF from SOCIAL SERV,my daughter had to get a taxi at 7am to go to her brother as I had to be rushed to Hosp as I was unconscious.. I got into trouble for that

    Liked by 1 person

    Comment by fnaf toy kitty — June 17, 2019 @ 7:26 AM

  15. I find Melatonin assists with my sleep

    Liked by 1 person

    Comment by Carol Barrett — August 1, 2020 @ 5:49 PM

  16. LAMICTAL never has been any help for me for decreasing or stopping my grand mals, yet it did cause INSOMNIA which I figure has never helped my brain to become a relaxed & focused brain, all at the same time repairing the brain during sleep of 7 to 9 hours a night. More like 6 & a half to maybe 4 hours was all I got when taking 150mgs a day of Lamictal, On 100mgs daily I got at the most 7 hours of sleep maybe 3 night out of the week, & WHEN I woke up during the night, forget trying to get back to sleep, as that didn’t happen until maybe after 5AM. Since being on 75 & now 50mgs a day, I’m getting MORE THAN 7 hours a night & not waking up as I have been doing taking 100mgs a day of lamictal. All of that has to have some effects as to WHY my seizure pattern has been what it’s been since being on lamictal SINCE year 2000. Someone needs to make these drug makers to stop making the AED’s that gives you INSOMNIA, not to say every AED has to be like PHENOBARBITAL that makes you drowsy all the time with no energy. So WHY are the RNS, & VNS so popular if better SLEEP can do maybe BETTER THINGS FOR BRAIN HEALTH ? Sleep does not cost over $50,000 or more to have installed. Sleep does not have BAD side effects that for most people the brain will be more functional & alert on many things where brain & heart health benefits. Any stressed out brain will stress the heart out MORE & HIGH BLOOD PRESSURE happens more. PEACE OF MIND is all someone needs & going off AED’s that causes Insomnia can give you that & give you better sleep.

    Liked by 1 person

    Comment by James D — October 29, 2020 @ 9:13 AM

    • For my part, Lamictal was very successful after I settled down. At first, it made my hyper/crazy, but after I changed my full evening dose to 6:00 PM instead of all at bedtime, all was well. And I’ve been 99% seizure-free for 10+ years.


      Comment by Phylis Feiner Johnson — October 29, 2020 @ 9:36 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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