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Narcolepsy is considered both a neurological disorder and a type of sleep disorder. It causes sleep cycle disturbances and makes it virtually impossible to stay awake throughout the day. Excessive daytime sleepiness (EDS), sometimes called hypersomnia, is the most common symptom of narcolepsy. EDS is less of an urge to sleep than it is a struggle to keep from falling asleep. Hypersomnia can cause people to fall asleep at any time and under dangerous conditions, like when they’re driving their child to school.
The International Classification of Sleep Disorders (ICSD-3), the gold standard in diagnostic criteria for sleep disorders, defines hypersomnia as “the inability to maintain wakefulness and alertness during the major waking episodes of the day, with sleep occurring unintentionally or at inappropriate times almost daily for at least three months.”
Sleep is as important to our health and survival as food and water. The average adult needs at least seven hours of good sleep per 24-hour day. In addition to EDS, the symptoms of sleep deprivation include moodiness, increased appetite, poor concentration, and slowed response times. The negative outcomes of inadequate or poor sleep, particularly over time, are far reaching and take a devastating toll on one’s physical and mental health. EDS and narcolepsy can disturb every part of a person’s life, from their work performance to their personal relationships. In some cases, narcolepsy and EDS can prevent a person’s ability to accomplish day-to-day tasks.
EDS is usually a side effect or an outcome of an underlying condition (secondary hypersomnia) and is rarely a stand-alone diagnosis or condition (primary hypersomnia). Possible underlying causes of EDS or hypersomnia include:
Primary hypersomnias — which narcolepsy is considered to be — are neurological disorders with a genetic component. Some people are more likely to have narcolepsy if they have a close family member with a sleep disorder. These cases are rare and largely underdiagnosed.
When someone tells their health care provider they have been fighting to stay awake and alert during the day, their provider should set about the task of identifying the cause of the EDS. To reach a diagnosis of narcolepsy and hypersomnia, health care providers essentially rule out everything else that might be at the root of the EDS. To do so, they take a detailed report of the person’s sleep and health history, conduct a thorough physical exam, and may perform a sleep study and other tests.
Sleep apnea, experienced by almost 4 percent of the population, is the leading cause of hypersomnia — followed by narcolepsy. Between 10 percent and 25 percent of the U.S. population battles EDS in their daily lives. Narcolepsy affects 135,000 to 200,000 people in America. Both disorders are easily misdiagnosed and thought to be underdiagnosed and underreported. The number of people living with EDS and narcolepsy is likely much higher.
Sleep is an important part of growth and cognitive brain development. We need less sleep the older we get. Babies sleep as many as 18 hours a day. EDS and narcolepsy can be particularly damaging for young people living with these conditions. Children and teens need as much as nine to 11 hours of sleep (compared to seven hours for adults).
Ample, restful sleep is particularly important for children and teenagers. Still, it takes an average of 14 years to receive a correct diagnosis of narcolepsy. Narcolepsy and EDS present differently in children than in adults. Signs in children may include emotionality and moodiness, hyperactivity, and aggression. These can be easy to miss or mistaken for something else.
National data shows almost 70 percent of high school students report being sleep deprived. The severity of short-sleep was the worst during the 12th grade — likely related to the stress of academic, social, and emotional pressures during senior year. Not only do sleep disturbances and EDS get in the way of young people's learning and growth, they have a big impact on their self-esteem, safety, and well-being — putting them at greater risk for anxiety and depression than the general population. Sleep-deprived teens were more likely to have car accidents and reported more sports-related and accidental injuries.
A study found that high school students who slept less than seven hours per school night were more likely to take safety risks, like not using a seat belt, or ignore protective measures, like wearing a helmet while biking.
An estimated 1.5 percent of the population lives with EDS. Sleep disorders are the leading cause of EDS. Sleep deprivation, or short-sleep duration, has been shown to disrupt the way the body processes glucose. This increases the likelihood that people who regularly get less than seven hours of sleep will develop type 2 diabetes. In turn, hypersomnia complicates or worsens chronic conditions like diabetes, heart disease, and obesity. Short sleep also interferes with the body’s process of sorting and storing memories and removing toxins from the brain. It can adversely affect mental health, leading to depression and anxiety. A study of people with sleep apnea found them to be five times more likely to have depression than those without.
EDS causes an overwhelming urge to nap. This excessive sleepiness makes concentration, focus, and daily activities difficult, if not impossible. The real-world impact of EDS extends beyond the number of people living with these conditions. The unpredictability of dozing off can endanger the person living with narcolepsy as well as those around them — for instance, if operating a vehicle or heavy machinery. Five percent of people with sleep disorders, including narcolepsy, admitted to falling asleep behind the wheel. Sleepiness is responsible for 1,550 fatalities and 40,000 injuries on the road every year. Thousands more die due to medical mistakes in U.S. hospitals each year; many of these mistakes are believed to be related to the effects of sleep deprivation, which can cause EDS.
There is no cure for narcolepsy or hypersomnia. However, these conditions are both treatable and manageable. A combination of medicines, behavioral therapies, and lifestyle changes are used to manage these conditions by addressing the underlying causes and treating the symptoms.
Medications prescribed for the treatment of narcolepsy may include:
Each treatment recommendation is tailored to the specific symptoms, underlying causes, and other related health conditions a person has. A sleep specialist is best trained to recommend treatment options to manage EDS or narcolepsy.
There are things you can do to get the most out of your treatment program.
Sleep is a vital part of healthy human functioning, but many of us aren’t getting enough of it. Early, correct diagnosis of sleep disorders is an important part of living life as fully as possible. Most people living with a narcolepsy or EDS diagnosis report noticing their symptoms in childhood or adolescence, but it takes an average of 14 years to receive an accurate diagnosis. Knowing your body, symptoms, and sleep history is your best tool to manage these disorders.
Your day-to-day routine, particularly before bedtime, can make the difference between getting a full night’s restful sleep or not. This is what is meant by sleep hygiene. What you eat and drink, the medications you take, your sleep schedule, and whether or not you take short naps — and when — have a heavy hand in determining sleep quality. Keeping a sleep diary and taking self-sleep measurements (like the ESS and the SSS) can also be helpful in determining how well your treatment is working.
Sleep is an integral part of development, brain functioning, and overall health. It’s vital to the health of your mind and body. EDS and narcolepsy can both be caused by an underlying condition and also worsen underlying health problems. That’s why it's important to ensure healthy functioning in all aspects of your life.
Therapy, like cognitive behavioral therapy, can improve your relationship with sleep. It can also address the increased risk for depression and anxiety that EDS and narcolepsy cause.
Try to get regular exercise and maintain a healthy, balanced diet that is light on caffeine and alcohol.
Keep up with your doctors’ appointments, therapy sessions, prescription refills, and regular testing. It’s important that your somnambulist and other health care providers are aware of the medications and supplements you’re taking, and any other health conditions you have.
Self-care is important. Make time for people and things that bring you comfort and joy. Find a community that understands what you’re going through — both online and in-person support groups are available.
Scientists are working hard to learn more about narcolepsy, hypersomnia, and how to treat them. Learn about the ways the National Institutes of Health are driving the effort, like the BRAIN Initiative. Explore ways to contribute to cutting-edge research on sleep disorders like narcolepsy and EDS through the National Institute of Neurological Disorders and Stroke.
If you experience sleep disruption, EDS, or other symptoms, make an appointment to speak to your health care provider. Your medical history is one of the most important pieces of a diagnosis. Your first step should be to track your sleep patterns and symptoms. A sleep journal is helpful, or you can track your sleep digitally through the many apps that exist to improve sleep hygiene.
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Allen J. Blaivas, D.O.
is certified by the American Board of Internal Medicine in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine. Review provided by VeriMed Healthcare Network.
Learn more about him here.
Nyaka Mwanza
has worked with large global health nonprofits focused on improving health outcomes for women and children.
Learn more about her here.
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