Sleep – it seems like we can never get enough of it! We invest in Fitbits and Apple Watches to track it, and millions of dollars are spent on the perfect sleep aids, yet it seems like no matter what we do, we can never get enough.
This is even more true for individuals with epilepsy! In addition to seizures, people with epilepsy also experience sleep issues that further disrupt their daily lives, including nocturnal seizures, insomnia, sleep apnea, and daytime fatigue.
The relationship between sleep and seizures is complex – but since both originate in the brain, it makes sense that they would impact each other. For individuals with hypothalamic hamartomas (HH), the fact that the hypothalamus is also the major driver for the circadian rhythm of sleep and waking cycles, getting enough sleep may be an even bigger challenge.
Sleep problems and epilepsy share a complex relationship. One study summarized it this way:
- Electrical brain activity during light sleep may induce seizures. (Many HH families and adults with HH have reported that the individual regularly experiences a gelastic seizure just as they are falling off to sleep).
- Daytime seizures and antiepileptic drugs (AEDs) can contribute to fragmented sleep and reduce the amount of quality nighttime sleep.
- Other sleep disorders further disrupt sleep, worsen symptoms of epilepsy, and affect the overall quality of life.
- Some symptoms of sleep disorders themselves mimic seizures, which can prevent individuals from receiving a proper diagnosis and effective treatment afterward.
The most common sleep problems affecting individuals with epilepsy include nocturnal seizures and insomnia, sleep deprivation and daytime fatigue, and sleep apnea.
The Epilepsy Foundation best summarized the definition of nocturnal seizures and insomnia this way:
“Some people experience seizures only during sleep, known as nocturnal seizures or sleep-related epilepsy. Between 7.5 to 45% of people with epilepsy experience these sleep seizures. They’re most common during childhood, affecting up to 60% of children with epilepsy.
Since they’re asleep when the seizure occurs, it’s not uncommon for people to not realize that what’s waking them up is actually a seizure – and then mistakenly self-diagnose with insomnia. As a result, their problem will persist since they never get treatment for the root issue: night seizures.
Signs you experienced a nocturnal seizure include waking up confused, feeling pain from biting your tongue or grinding your teeth, or discovering you were incontinent. Others, like a sleeping partner or parent, may observe you making involuntary movements.
However, these symptoms can also stem from another sleep disorder like sleep bruxism or periodic limb movement disorder, which is why it’s important to get properly diagnosed. Your doctor may recommend an overnight sleep test in a laboratory, called a polysomnogram, where sleep technicians will monitor your brainwaves and more to detect nocturnal seizures.
Nocturnal seizures typically occur in stage 1 or 2 of light sleep, thus interrupting sleep and preventing the individual from reaching slow-wave and REM sleep. The end result is reduced quality of sleep.
Sleep deprivation, along with emotional stress and tiredness (two effects of sleep deprivation) are the top three triggers for seizures, according to one large study from Norway.
Researchers estimate one-third of people with epilepsy have undiagnosed sleep apnea, according to one University of Michigan study. They’ve also observed a link between sleep apnea and the likelihood of experiencing nocturnal seizures.
Obesity is another risk factor for sleep apnea, and weight gain is a side effect of many anti-epileptic drugs (AEDs) individuals take to manage their seizures”. (1)
Hope for HH recently conducted a comorbidity survey of our community and when it came to sleep issues – adults with HH and HH caregivers reported the following as the top sleep issues:
For many individuals with HH and uncontrolled seizures, polytherapy – taking more than one AED at a time, is common practice. Recent studies have shown that anticonvulsants can either enhance or disrupt sleep independent of their effects on seizures. The effects of more than one AED at a time only magnify the problem!
Some of the more common AEDs and their effect on sleep are:
- Benzodiazepines (such as diazepam and lorazepam) and barbiturates( phenobarbital, primidone ) are used less commonly for chronic treatment of seizure disorders but have the most convincing evidence for detrimental effects on sleep. Both of these classes of medication have been used as sleep promoting agents, although newer drugs have replaced these in recent years. They do decrease the time to fall asleep but also decrease the amount of REM sleep and (in the case of benzodiazepines) slow wave sleep. Therefore, sleep quality can be adversely affected.
- Studies on the effects of other AEDs show somewhat variable results, but a few conclusions can be made.
- Phenytoin may increase light sleep and decrease sleep efficiency, and studies show decreased REM sleep.
- Findings for carbamazepine are more variable, but there also seems to be a reduction in sleep particularly with initial treatment.
- Studies of newer AEDs suggest fewer detrimental effects on sleep.
- One study with lamotrigine showed decreases in slow wave sleep, but others have shown no change.
- Gabapentin has no detrimental effects on sleep, and in fact seems to enhance slow wave sleep in patients with epilepsy and in normal volunteers. Gabapentin also increases sleep continuity and decreases awakenings. Furthermore, limited studies suggest that gabapentin may be useful in the treatment of one common sleep disorder, restless legs syndrome, although carbamazepine and lamotrigine have also been used.
- Levetiracetam seems to have no detrimental effects on sleep.
- The effects of zonisamide, oxcarbazepine, and topiramate on sleep and sleep disorders are not known. (2)
Individuals with HH and their caregivers often ask about seizure alert devices and how well they work during sleep. This is a much longer topic and very individualized. There are a few devices available that can detect repeated shaking movements during a seizure. These may work with tonic-clonic seizures or focal motor seizures with enough movements to trigger the device. Seizures without big movements (such as absence seizures and many types of focal or partial seizures), are not detected by these devices. Individuals with HH that have tried some of the devices have reported that gelastic seizures did not register on the devices they tried. To learn more about the current state of monitoring technology, you can start here.
So how can individuals with HH and their caregivers improve the chances of getting a good night’s sleep? Some of the following may have heard before, but others may be new to you. Adding to your stress level is not the goal – try to add in one tip or new routine and see what works for you or your loved one.
- Follow a regular bedtime and wake-up time. Shoot for 7-8 hours as an adult and 9-10 hours for the 5-19 age range.
- Exercise (whatever activity you can safely do) and eat well. Avoid caffeine and alcohol. One makes it difficult to go to sleep and the other wakes you up early!
- Review all medications – this is extremely important for individuals on anti-seizure medications. HH kids and adults are often on a variety of medications besides AEDs. They can interact and compound a sleeping problem!
- Establish a calming bedtime routine. Try meditation, journaling, reading, or a warm bath. Turn off all electronics! When your brain senses blue light from an electronic device, it perceives it as sunlight. As a result, it assumes it’s still daytime, so it’s not yet time to kick off melatonin production. Melatonin is a hormone that regulates the sleep-wake cycle. It releases at night, inducing sleep. The longer the brain delays melatonin release, the harder it is to fall asleep, and stay asleep.
- Make the bedroom safe and comfortable to avoid injury. Invest in a padded headboard. Get floor mats and pads to surround the bed and get a low base for the bed in case you fall out during a night seizure. Remove sharp furniture or fragile objects from around the bed.
Hopefully, 2020 is the year both caregivers, and individuals with HH, can slow down enough to focus on taking steps to improve the quality of our lives. Sleep is a great place to start. Start simple, and please share any tips or suggestions you may have that worked for you and your family!
Sleep Foundation – www.sleepfoundation.org
Child Mind Institute – www.childmind.org
What is a Sleep Study – Golisano Children’s Hospital