Excessive Daytime Sleepiness, Hypersomnia, and Narcolepsy

What is excessive daytime sleepiness?

Excessive daytime sleepiness, or EDS, is a condition that causes a person to feel very sleepy during the day. A person may sleep longer at night, take naps during the day, or fall asleep at unusual or inappropriate times such as at school or work. Some people with EDS may have “microsleeps,” in which they very briefly fall asleep and may not even know that they have slept. After a microsleep, they may feel as if they have “zoned out” or stopped paying attention briefly.

Unlike fatigue or being tired, EDS does not go away with extra sleep. However, extra sleep and healthy sleep habits can improve alertness and improve daily function.

Hypersomnia and narcolepsy are sleep disorders that cause excessive daytime sleepiness. Children and teens with cancer are more likely to have hypersomnia or narcolepsy compared to otherwise healthy children. These disorders are most common among children with certain types of brain tumors.

Read more about Hypersomnia Read more about Narcolepsy

A test called the Multiple Sleep Latency Test (MLST) can be used to know if a child has hypersomnia or narcolepsy.

In addition to healthy sleep habits and coping skills, treatment may include medication to increase attention and alertness during the day.

A child or teen with hypersomnia or narcolepsy may also need special accommodations at school to help with learning and concentration. Scheduled naps at school, later start times, shortened school day, or extra time on homework or tests may help academic performance.

What is hypersomnia?

Hypersomnia is a sleep disorder that causes a person to be very sleepy during day. This is called excessive daytime sleepiness or EDS. A person with hypersomnia feels a frequent need for sleep and rarely feels fully rested. The disorder causes a person to fall asleep more quickly than normal and causes problems in daily function.

A sleep study is used to evaluate whether excessive daytime sleepiness is due to hypersomnia or narcolepsy. Narcolepsy is diagnosed if a person enters the REM stage of sleep more quickly than normal.

Symptoms of hypersomnia

Symptoms of hypersomnia include:

• Being very sleepy during the day (excessive daytime sleepiness)
• Having trouble waking up or staying awake
• Feeling groggy or confused after waking up
• Sleeping longer at night or napping more during the day
• Feeling unrested after sleep
• Having trouble thinking or concentrating (“brain fog”)
• Feeling low in energy or lethargic
• Having problems doing tasks or keeping up at school or work

Causes of hypersomnia

A variety of factors can influence the sleep-wake cycle and contribute to hypersomnia. These include:

• Brain injury due to the effects of a tumor, stroke, surgery, radiation, or head trauma
• Medicines such as corticosteroids or pain medicines
• Hormone changes
• Depression or anxiety
• Alcohol or drug abuse
• Poor sleep habits and sleep disorders such as insomnia or sleep apnea

Children with certain types of brain tumors such as craniopharyngioma are at high risk for hypersomnia. These tumors develop near the hypothalamus, a brain structure that helps regulate sleep.

Hypersomnia can sometimes develop without a known cause, a condition called idiopathic hypersomnia.

Diagnosis of hypersomnia

A doctor will perform a medical history and physical exam. Blood tests may be used to look for changes in blood counts, hormones, and organ function. A review of medicines can help determine if sleepiness might be a side effect of certain drugs the patient is taking.

Tests specific to sleep and sleep patterns may include:

• Patient and family interview or questionnaire to assess symptoms
• Sleep diary to track daytime and nighttime sleep
• Sleep study to measure brain, muscle, heart rate, and breathing activity during overnight sleep (polysomnography)
• Multiple Sleep Latency Test (MSLT) to measure how long it takes the patient to fall asleep

Treatment of hypersomnia

Lifestyle changes for hypersomnia

Scheduled daytime naps and physical activity may help increase alertness during the day. Patients should not do activities that might be dangerous such as riding a bike, driving, cooking, or swimming if there are concerns about alertness. Cognitive behavioral therapy (CBT) can help patients and families learn skills to improve sleep habits and cope with the effects of hypersomnia. 

Medicine for hypersomnia

A doctor may also prescribe a stimulant medicine such as modafinil (Provigil®) or methylphenidate (Ritalin®) to increase attention and alertness. Patients should take the medicine as prescribed and talk to their doctor or pharmacist before making any changes to the dose or timing of the medicine.

School accommodations for hypersomnia

A child or teen with hypersomnia may also need special accommodations at school. Families should work with schools to develop a 504 Plan. Examples of accommodations include scheduled naps at school, later start times, shortened school day, or extra time on homework or tests.

Resources for more information on hypersomnia

What is narcolepsy?

Narcolepsy is a neurological disorder that disrupts the sleep-wake cycle and causes excessive daytime sleepiness. A person may feel very sleepy during day (excessive daytime sleepiness) and have trouble staying awake. “Sleep attacks” of overwhelming sleepiness can come on suddenly. Some people with narcolepsy fall asleep at unusual times or places. Narcolepsy can cause interrupted sleep and frequent waking during the night. Narcolepsy is diagnosed in a person with hypersomnia if the person enters the REM stage of sleep more quickly than normal at night and when taking naps during the day.

Symptoms of narcolepsy

Symptoms of narcolepsy include:

• Feeling very sleepy during the day (excessive daytime sleepiness)
• Having sudden episodes of overwhelming sleepiness or falling asleep at unusual times and in unusual paces (sleep attacks)
• Having sudden muscle weakness or being unable to move (cataplexy); this is less common in narcolepsy caused by brain tumors
• Waking up frequently during the night or having disrupted sleep
• Experiencing brief episodes of being unable to move or speak while falling asleep or waking up (sleep paralysis)
• Experiencing hallucinations when falling asleep at night (hypnagogic hallucinations)
• Having problems functioning at school or work

Causes of narcolepsy

The causes of narcolepsy are not fully understood. Narcolepsy can sometimes run in families but often develops without a known cause.

Damage to the hypothalamus, a brain structure that helps regulate sleep, can increase risk for narcolepsy. Some types of narcolepsy involve a change in the neurotransmitter hypocretin, a chemical signal produced in the hypothalamus.

Children with a type of brain tumor called craniopharyngioma are at risk for narcolepsy. These tumors develop near the hypothalamus, Narcolepsy may occur due to the effects of the tumor itself or develop after surgery to remove the tumor.

Diagnosis of narcolepsy

A doctor will perform a medical history and physical exam. Blood tests may be used to look for changes in blood counts, hormones, and organ function. A review of medicines can help determine if sleepiness might be a side effect of certain drugs the patient is taking.

A lumbar puncture may be used to measure the amount of hypocretin (also known as orexin) in the cerebrospinal fluid. Low levels of hypocretin can indicate a type of narcolepsy.

Tests specific to sleep and sleep patterns may include:

• Patient and family interview to assess symptoms
• Sleep diary to track daytime and nighttime sleep
• Sleep study to measure brain, muscle, heart rate, and breathing activity during overnight sleep (polysomnography)
• Multiple Sleep Latency Test (MSLT) to measure how long it takes the patient to fall asleep

In narcolepsy, patients fall asleep quickly and enter REM sleep, a specific part of the normal sleep cycle. People without sleep problems take longer to go into REM sleep and are less likely to enter REM sleep during daytime naps.

Treatment of narcolepsy

Lifestyle changes for narcolepsy

Scheduled daytime naps and physical activity may help increase alertness during the day. Patients should not do activities that might be dangerous such as riding a bike, driving, cooking, or swimming if there are concerns about alertness. Cognitive behavioral therapy (CBT) can help patients and families learn skills to improve sleep habits and cope with the effects of narcolepsy.

Medicine for narcolepsy

A doctor may prescribe a stimulant medicine such as modafinil (Provigil®) or methylphenidate (Ritalin®) to increase attention and alertness. Sodium oxybate (XYREM®) is another type of medicine that may be used to treat narcolepsy. Patients should take medicine as prescribed and talk to their doctor or pharmacist before making any changes to the dose or timing of the medicine.

School accommodations for narcolepsy

A child or teen with narcolepsy may also need special accommodations at school. Families should work with schools to develop a 504 Plan. Examples of accommodations include scheduled naps at school, later start times, shortened school day, or extra time on homework or tests.

Resources for more information on narcolepsy