Dreaming of Better Sleep with LGS

Seizures in  LGS—especially tonic seizures—happen often during non-REM sleep. In addition, families also reported sleep apnea, night terrors, bedwetting, and restless legs that cause interrupted sleep. These issues often lead to co-sleeping.

43% of families sleep in the same room or bed so they can monitor their loved one.

Many caregivers co-sleep with their LGS loved one to closely monitor for nighttime seizures or respiratory difficulties, especially given the heightened risk of SUDEP in LGS. Co-sleeping can provide reassurance to caregivers, but it is also associated with decreased sleep quality, increased caregiver fatigue, and greater risk of anxiety and depression in caregivers. 

Co-sleeping is a personal decision, and caregivers should weigh the reassurances of co-sleeping against the effect on their sleep and mental health.

Children and adults with more than 20 seizures per month reported the highest rates of nighttime sleep problems: trouble falling asleep, frequent waking, sleep apnea, and daytime naps. Stress, illness, fever, and medication side effects can worsen the cycle of poor sleep and poor seizure control.

Research shows that nighttime seizures are common in LGS and lead to disrupted sleep architecture and frequent awakenings. 

Nighttime seizures and resulting disrupted sleep can lead to significant daytime consequences, including cognitive impairment, behavioral problems, increased seizure frequency due to sleep deprivation, and an increased risk of SUDEP (more information on this below).

Most families living with nighttime seizures focus on improving nighttime safety, getting the best seizure control possible, and co-sleeping or using monitoring devices such as movement cameras or wearable devices.

Individuals who have LGS often sleep 5–7 hours or less per night, with nearly 1 in 5 getting fewer than 5 hours. This leads to exhaustion, increased seizures, anxiety, and stress. Recognizing our loved one’s sleep needs is just as important as addressing caregiver sleep needs. 

For adults, it is recommended that 7 or more hours of sleep on a regular basis promotes optimal health. Less than 7 hours is associated with adverse health outcomes, including diabetes, high blood pressure, heart disease, depression, and an increased risk of death. Sleeping less than 7 hours per night is also associated with impacted immune function, increased pain, and impaired daily function. 

For children, the need for sleep is even greater. Preschool children should target 10-16 hours of sleep per day, while school-aged children should target 8-12 hours per day. Kids who get enough sleep show improvements in attention, behavior, learning, memory, emotional regulation, and overall quality of life. 

Sleep Disturbances May Raise SUDEP Risks

While the exact mechanisms of Sudden Unexpected Death in Epilepsy (SUDEP) remain under investigation, uncontrolled seizures are considered a primary risk factor for SUDEP. Families should receive guidance on SUDEP and seizure control strategies from healthcare providers.

There are a few important things to know about SUDEP:

• Understand the Risk: SUDEP primarily affects individuals with uncontrolled seizures, especially frequent generalized tonic-clonic seizures. Being aware of the increased risk associated with seizure frequency and severity is essential.
• Get the Best Possible Seizure Control: Achieving and maintaining optimal seizure control through medication adherence and other treatments can significantly reduce the risk of SUDEP.
• Plan for Nighttime Safety: Since many SUDEP cases occur during sleep, caregivers should consider safety measures such as supervision, seizure detection devices, and safe sleep environments.
• Communicate with Healthcare Providers: Open discussions with neurologists and epilepsy specialists, including counseling about risks and management strategies, are vital.

We understand this is a significant concern and challenging subject. You can learn more about SUDEP in our LGS Learning & Resource Center.

Poor sleep and sleep deprivation are well-documented to increase the risk of seizures in those with epilepsy and LGS. Lack of sleep can reduce the threshold for a seizure in a person’s brain, making seizures more likely. Further, nighttime seizures are known to worsen sleep quality, which can further disrupt sleep. 

Adequate, restorative sleep is crucial for seizure control. As caregivers, we should do all we can to prioritize good sleep hygiene and managing seizure risks in LGS. This is really difficult to do in LGS but some caregivers report success. Some ideas to try include:

• Bedtime routines: with relaxation, meditation, or gentle yoga.
  
• Comfortable sleep environments: blackout curtains, weighted blankets, white noise, or calming music.
  
• Nutrition adjustments: limit sugar at night; increase foods with magnesium (ex: legumes, green leafy vegetables, potatoes, etc.) or tryptophan (ex: turkey, seeds, beans, etc.).

These worked for some LGS families. It’s important to find what will work for you and your family. 

Sleep Management Is Integral to LGS Care

LGS treatment often involves medications, neuromodulation, dietary strategies, and therapy, but managing sleep by addressing sleep problems and optimizing rest is also vital. The LGS Foundation acknowledges that treatment for LGS must include addressing sleep disturbances as part of holistic care.

Individuals with LGS should be tested for sleep disorders including:

• Insomnia
• Obstructive sleep apnea
• Excessive daytime sleepiness
• Parasomnias

According to the American Epilepsy Society, these sleep disturbances significantly impact seizure control and overall sleep health. Share this flyer with your doctor when you ask them about your loved one’s LGS and sleep. 

The American Epilepsy Society also has some Sleep Hygiene tips for those with epilepsy. These tips are:

• Maintain regular sleep and wake times, even on weekends. 
• Maximize natural light during the day and minimize bright light in the evening.
• Aim for 7-9 hours of sleep and avoid naps if at all possible. This is typically not possible in most with LGS. 
• Limit caffeine after 12:00pm , including sodas and chocolate.
• Use the bed only for sleeping and avoid screen time or other activities in bed if possible. 
• Establish a relaxing bedtime routine such as light stretching and avoid vigorous exercise around sleep time. 

Caregivers should also address their sleep needs. Other LGS caregivers have suggested short daytime naps, respite care, or night nurses to share the burden so that caregivers can rest too. 

We know it is very difficult for many families living with LGS to get a good night’s sleep. Given the connection between sleep and seizures, it is important to try to find what works best for your family to improve everyone’s sleep.

The LGS Foundation is committed to funding critical research so we can make better sleep for LGS families a reality. 

On the horizon, sleep research in LGS includes using wearable technology to capture sleep data on many individuals with LGS and their family members. Research to develop tailored interventions to improve sleep in people with LGS and their families is also in progress. 

New research seeks to understand how best to measure sleep disorders in those with LGS. In this LGS Foundation funded study, Dr. Gita Gupta is comparing wearable devices, questionnaires, and sleep polysomnography's to test what works best for those with LGS. 

Learn More about Dr. Gupta's Study

Another complementary LGS Foundation funded sleep study will examine how responsive neurostimulation (RNS) may alter day–night brain rhythms and possibly improve sleep-related seizure patterns.

Learn More about Dr. Warren's Study

Emerging research seeks not only to test new devices to measure sleep in LGS, but also new therapies to target sleep architecture to improve seizure control and brain health. 

Sleep is a major issue in those living with LGS and there is new hope through research that we do not just dream of better sleep in LGS, but are working hard to also realize it. 

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