Narcolepsy: A Hidden Cause of Extreme Daytime Sleepiness

Daytime sleepiness happens to almost everyone. Often, it’s due to burning the candle at both ends. But if daytime sleepiness is excessive and interferes with daily life, a sleep disorder may be the cause.

Narcolepsy is a common, yet misunderstood, cause of daytime sleepiness. The condition causes people to fall asleep during normal waking hours, while at school, socializing or in meetings. Narcolepsy often starts in childhood or adolescence, and the symptoms can be puzzling to children and parents alike.

“People with narcolepsy often are dismissed,” says Sally Ibrahim, MD, a pediatric sleep medicine specialist at University Hospitals Rainbow Babies & Children’s Hospital. “They get mislabeled as just not trying hard enough, when they are trying their best to fight a brain that wants them to fall back asleep. No matter how much sleep they get at night or how motivated they are, they can’t stay awake.”

Symptoms of Narcolepsy

Narcolepsy typically goes undiagnosed for many years, often misdiagnosed as depression or other behavioral health issues, says Dr. Ibrahim. In addition to excessive daytime sleepiness and disrupted sleep, other common symptoms may include:

• Cataplexy: A sudden, brief loss of muscle control often triggered by positive emotion, such as laughing. Most people with narcolepsy experience cataplexy.
• Hallucinations: Intrusions of dreamlike states in the form of seeing or hearing things before falling fully asleep or after waking up. When this occurs, you are dreaming and awake at the same time. Not everyone with narcolepsy will experience hallucinations.
• Sleep paralysis: Brief inability to move before falling asleep or after waking up. This is an intrusion of dream sleep, when we are paralyzed (except for our diaphragm, which helps up with breathing).

Hallucinations and sleep paralysis can be extremely frightening to children, says Dr. Ibrahim. Many young kids are unable to articulate what is happening to them. “It can be upsetting, especially the first time you experience it. If it’s a child, once they break through the paralysis or after they experience a hallucination, they may be afraid to go back to sleep.”

Diagnosing Narcolepsy

Left untreated, narcolepsy can lead to social, psychological, and school and work challenges. It can impair academic and job performance. “Many people have emotional trauma after their symptoms have been repeatedly dismissed, to the point that they’re desperate to get a diagnosis because they’ve suffered silently for so long,” Dr. Ibrahim says.

Fortunately, awareness is growing for the need to screen young people for sleep problems, including narcolepsy. Doctors may use a questionnaire called the Epworth Sleepiness Scale to assess excessive daytime sleepiness. They can refer patients to sleep medicine specialists for further evaluation.

Sleep clinics can conduct specialized sleep studies that use sensors to measure brain activity, breathing, and eye and muscle movements during different stages of sleep. These tests can identify narcolepsy and other sleep disorders such as sleep apnea, limb movement disorder and other hypersomnia.

There are other, more invasive tests for narcolepsy, such as a lumbar puncture that measures a brain chemical called hypocretin. It regulates the “on-off” switch in the brain to wake up and fall asleep. When there’s too little hypocretin, the switch turns on and off throughout the day and night, making it hard both to stay awake and to stay asleep, Dr. Ibrahim says.

Treating Narcolepsy

There is no cure for narcolepsy, but there are a number of effective medications to treat it. “We continue to learn and grow with new medications on the horizon,” says Dr. Ibrahim. “Narcolepsy is not curable but it’s manageable. Most patients choose to manage it with medications because these medications can be very effective in achieving their goals.”

Medications include traditional stimulants, antidepressants and clinical trials are ongoing for new medications. Lifestyle changes can also help. These include daily exercise and proper nutrition, while minimizing habits that can disrupt sleep such as caffeine, alcohol and heavy meals close to bedtime.

Resources for guiding and educating families, schools and teachers for children living with narcolepsy are also important, Dr. Ibrahim says. Many students in high school and college may need special accommodations, such as longer time for tests. For adults, the support is often work accommodations that allow for nap breaks if needed, limited work hours to protect sleep and other types of support.

“People with narcolepsy can achieve their personal goals just like anyone else,” Dr. Ibrahim says. “They need the right management tools, the right medication(s), and support from their family, care team and community (school/work) in order to thrive with narcolepsy.”

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The sleep medicine team at University Hospitals Rainbow Babies & Children’s treats a wide range of childhood sleep disorders, from the common to the complex. With expert diagnosis and treatment, we offer proven, evidence-based methods to help children achieve quality sleep.