The views and opinions expressed in this article are those of the author, based on his medical training and experience.
Many years ago, I had the pleasure of working with a 16-year old with Lennox-Gastaut syndrome. He could sometimes be behaviorally challenging for his parents, and he had fairly frequent clusters of seizures. His parents noticed that he would go through periods where he wasn’t sleeping well; they could hear him pacing in his room at night. From my training days, I recognized that one of the biggest triggers for seizures was lack of sleep, so that caught my attention. Sure enough, as we started paying closer attention to his sleeping habits, we noticed that when he experienced these periods of disrupted sleep, he would have more clusters of seizures and he would be more behaviorally challenging. Likewise, his parents found that if he slept well, his seizures were shorter or less frequent and he was much calmer. These observations began our efforts to intervene in whatever ways we could to improve this boy’s sleep. It was a challenge to find the right combination of medication and behavioral interventions that improved his sleep, but eventually we found a regimen that worked for him. Getting better sleep didn’t completely stop his seizures, but it definitively improved them and made a difference on his behavior throughout the day.
What this experience taught me is that sleep disruption is not simply an annoyance; it is a serious complication that should be addressed. People with epilepsy who do not get enough quality sleep can get caught in a cycle.
"Sleep disruption is not simply an annoyance; it is a serious complication that should be addressed."
Even though we describe sleep as being “unconscious,” it is not a passive process. In fact, the brain is very active during sleep, and undergoes important mental processes that allow it to function normally. Thus, sleep is essential for life. The amount of sleep an individual needs changes as he or she ages. Infants between 4 and 11 months of age, for example, may need to sleep up to 15 hours each day. Between the ages of 3 and 5 years of age, kids typically need between 10 and 13 hours of sleep each day. Whereas adults between 18 and 64 require between 7 and 9 hours of sleep per day. These are just guidelines, though; the amount of sleep each individual needs can depend on many factors, including lifestyle and health.[2-4]
Both seizures and certain anti-seizure medications can impact sleep structure and lead to disrupted sleep. As I said earlier, my patient’s parents heard him pacing in his room during the night and knew he wasn’t sleeping well. Research has shown that this young fellow isn’t alone in that regard. People with epilepsy do not sleep efficiently. That is, they spend more time in bed not sleeping than other people. These studies also show that people with epilepsy spend less time in deep sleep and dream sleep than people without epilepsy. We don’t know for sure whether more seizures means more sleep disruption, but it is clear that people with epilepsy have difficulty getting good, quality sleep.[1,5]
Now, the reason I call this a cycle is that, just as we saw with the young boy who had more frequent seizures after not getting a good night’s sleep, studies show that one of the biggest triggers for seizures is sleep deprivation. Sleep deprivation triggering seizures is something I observe in clinical practice universally, among all epilepsy types. Even people who are well-controlled report breakthrough seizures when they are deprived of good, quality sleep. And so, we see a cycle form; seizures can disrupt sleep and sleep disruptions can lead to more seizures. This lack of quality sleep can cause many problems, such as [1,5]:
- Poor memory
- Trouble paying attention
- Changes in personality
- Mood disorders
- Poor quality of life
"Sleep deprivation triggering seizures is something I observe in clinical practice universally, among all epilepsy types."
I do everything I can to help people with epilepsy avoid getting caught in this cycle. Beyond the potential impact on seizures and quality of life, there are some reasons to think that sleep disorders combined with epilepsy can lead to more serious consequences, such as Sudden Unexpected Death in Epilepsy, or SUDEP. SUDEP is currently not understood very well; we don’t know what causes it to happen. But, we do know that SUDEP often occurs in and around sleep, which makes us think there could be a link between sleep and SUDEP.[1,6] In a collaborative research project, we found that the amount of rest mice get declines progressively as death approaches in a mouse model of SUDEP. We don’t know for sure if sleep deprivation is actually causing SUDEP, but the connections between sleep and SUDEP are enough to make me take improving sleep quality in my patients with epilepsy very seriously. And, we are planning future studies to explore the potential connections between sleep and SUDEP more thoroughly.
As severe as some complications of inadequate sleep can be, and as much as we still have to learn about sleep in epilepsy, we know there are things we can do to improve sleep quality in general. There are lifestyle changes and good practices that we call “sleep hygiene measures,” which help improve sleep quality :
|>Eat healthy||Avoid eating or giving your child anything that is stimulating, such as caffeinated beverages, sugar, or chocolate late in the day|
|Establish a good bedtime routine||Try to keep consistent sleep hours and a regular wake-up time, even during the weekend|
|Create a good sleeping environment||The bedroom should be a dark, comfortable, and quiet environment; try not to do other active things in the bedroom so that it is associated with sleep|
|Relax and wind down||As bedtime approaches, try to engage in activities that are calming and relaxing, such as listening to classical music, drinking a cup of non-caffeinated tea, or taking a bath, provided heat is not a trigger for seizures|
|Turn off those screens||Avoid computer and tv screens at night|
|Increase physical activity||Find physical activities appropriate for you and your child that keep you physically active during the daytime|
"There are things we can do to improve sleep quality."
Keep in mind that these suggestions may not work for everyone. It is important to speak with a doctor to develop a plan to improve your child’s sleep—and your own.
Seeing this cycle between poor sleep and seizures is the reason I have been conducting research on sleep and epilepsy for the past 10 years. I sometimes wonder if sleep disruptions or lack of sleep could be one of the driving factors for disease progression in epilepsy. There is still a lot of research that needs to be done so that we understand this relationship better and hopefully, one day, develop more effective treatments to stop this cycle. Until then, put getting plenty of quality sleep at the top of your priority list. Sleep may be a challenge now; it is for many people living with epilepsy and caregivers of kids with rare epilepsies. But there are resources out there to help you navigate sleep issues, including:
- Epilepsy Foundation
- National Sleep Foundation
- Dravet Syndrome Foundation
- Lennox Gastaut Syndrome Foundation
- TS Alliance Foundation
- Jain SV, Kothare SV. Sleep and epilepsy. Semin Pediatr Neurol. 2015;22(2):86-92.
- Epilepsy Foundation. What is sleep. https://www.epilepsy.com/learn/challenges-epilepsy/sleep-and-epilepsy/what-sleep. Updated August 22, 2013. Accessed June 7, 2018.
- Epilepsy Foundation. Sleep and age. https://www.epilepsy.com/learn/challenges-epilepsy/sleep-and-epilepsy/sleep-and-age. Updated August 22, 201 Accessed June 7, 2018.
- National Sleep Foundation. How much sleep do we really need? https://sleepfoundation.org/excessivesleepiness/content/how-much-sleep-do-we-really-need-0. Accessed June 14, 2018.
- Maganti R, Sheth RD, Hermann BP, Weber S, Gidal BE, Fine J. Sleep architecture in children with idiopathic generalized epilepsy. Epilepsia. 2005;46(1):104-109.
- Ali A, Wu S, Issa NP, Rose S, et al. Association of sleep with sudden unexpected death in epilepsy. Epilepsy Behav. 2017;76:1-6.
- Iyer SH, Matthews SA, Simeone TA, Maganti R, Simeone KA. Accumulation of rest deficiency precedes sudden death of epileptic Kv1.1 knockout mice, a model of sudden unexpected death in epilepsy. Epilepsia. 2018;59:92-105.
- Epilepsy Foundation. Getting a good night’s sleep. https://www.epilepsy.com/learn/challenges-epilepsy/sleep-and-epilepsy/getting-good-nights-sleep. Updated August 22, 2013. Accessed June 7, 2018.