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Excessive Daytime Sleepiness (EDS) in Narcolepsy: Getting the Most Out of Treatment

Updated on September 06, 2021
Medically reviewed by
Allen J. Blaivas, D.O.
Article written by
Nyaka Mwanza

  • Between 10 percent and 25 percent of adults in the U.S. report excessive daytime sleepiness.
  • Narcolepsy is a chronic, but manageable, neurological disorder that affects 1 in 3,000 people in America.
  • A combination of medication, behavioral therapy, and lifestyle changes are used to treat narcolepsy and excessive daytime sleepiness.

What Is Excessive Daytime Sleepiness (EDS)? What Is Narcolepsy?

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.

What Causes EDS?

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 (Central Disorders of Somnolence)

  • Narcolepsy is a neurological disorder often caused by a chemical (hypocretin) deficiency in the brain that results in rapid eye movement (REM) sleep disruption and EDS, cataplexy, and sleep paralysis. Read more about different types of narcolepsy.
  • Kleine-Levin syndrome is a rare neurological disorder marked by recurrent periods of EDS.
  • Idiopathic hypersomnia is diagnosed when no other cause or contributing factor can be blamed for EDS.

Sleep Disorders

  • Obstructive sleep apnea and other sleep-related breathing disorders cause a person to stop breathing for periods during their sleep.
  • Restless legs syndrome, periodic limb movement disorder, and other movement-related sleep disorders interfere with a person’s sleep cycle.
  • Jet lag and other circadian rhythm disorders disrupt the body’s internal clock that tells a person when to sleep and wake up.

Medical or Psychiatric Conditions

  • Neurological disorders like Parkinson’s disease and multiple sclerosis can include EDS as a symptom.
  • Genetic disorders such as Prader-Willi syndrome affect sleep-wake regulation.
  • Chronic health conditions such as hypothyroidism and obesity are linked to EDS.
  • Psychiatric conditions such as major depression and bipolar disorder can mirror EDS symptoms or include EDS as a symptom.

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.

How Are EDS and Narcolepsy Diagnosed?

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.

  • Polysomnography — A polysomnogram is an overnight test done in a sleep lab that measures a person’s brain waves as they cycle in and out of sleep.
  • Multiple Sleep Latency Test (MSLT) — An MSLT, also conducted at a sleep clinic, measures daytime sleepiness.
  • Epworth Sleepiness Scale (ESS) — The ESS is a questionnaire designed to help a person rate their sleepiness throughout the day.
  • Stanford Sleepiness Scale (SSS) — Similar to the ESS, the SSS measures sleepiness in defined moments in a person’s day.
  • Swiss Narcolepsy Scale (SNS) — Doctors may use the SNS when people score higher than 10 on the ESS. The SNS asks questions about sleep habits, but also concentrates on the presence of cataplexy.
  • Home Sleep Apnea Testing — Home sleep apnea testing involves a device that captures information to allow a somnologist to diagnose or rule out sleep apnea.

How Do Narcolepsy and EDS Affect People Living With Them?

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.

EDS and Narcolepsy in School-Age Children and Teens

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.

EDS and Chronic Illness

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, Narcolepsy, and Safety

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.

Getting the Most Out of Treatment for EDS and Narcolepsy

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:

  • Wakix (pitolisant)
  • Sunosi (solriamfetol)
  • Provigil (modafinil)
  • Nuvigil (armodafinil)
  • Xyrem (sodium oxybate)
  • Antidepressants including Prozac (fluoxetine) and Effexor (venlafaxine)
  • Amphetamines such as methylphenidate, sold under the brand names Ritalin and Concerta

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.

Become an Expert on Your Own Experience

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.

Sleep Tight(er) Through the Night

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.

Embrace a Whole-Health Lifestyle

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.

Prioritize Your Mental Health

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.

Maintain Your Physical Health

Try to get regular exercise and maintain a healthy, balanced diet that is light on caffeine and alcohol.

Stick to Your Treatment Regimen

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.

Take Care of You

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.

Stay Informed

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.

References
  1. Watson, N. F., Badr, M. S., & Belenky, G. (2015). Joint Consensus Statement of the American Academy of Sleep Medicine and Sleep Research Society on the Recommended Amount of Sleep for a Healthy Adult: Methodology and Discussion. Journal of Clinical Sleep Medicine, 11(08), 931–952. doi: 10.5664/jcsm.4950 Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4507722/
  2. Hauri, P. (2017). The Sleep Disorders. National Sleep Foundation. Retrieved from https://sleepdisorders.sleepfoundation.org/
  3. Bidaki, R., Zarei, M., Khorram Toosi, A., & Hakim Shooshtari, M. (2012). A review on genetics of sleep disorders. Iranian Journal of Psychiatry and Behavioral Sciences, 6(1), 12–19. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3939950/
  4. Khan, Z., & Trotti, L. M. (2015). Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia. Chest, 148(1), 262–273. https://doi.org/10.1378/chest.14-1304. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4694150/
  5. Sehgal, A., & Mignot, E. (2011). Genetics of Sleep and Sleep Disorders. Cell, 146(2), 194–207. doi: 10.1016/j.cell.2011.07.004. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3153991/
  6. Pagel, J. F. (2009). Excessive daytime sleepiness. American Family Physician, 1(791), 391–396. Retrieved from https://www.aafp.org/afp/2009/0301/p391.html
  7. National Institutes of Health (NIH). National Institute of Neurological Disorders and Stroke. Narcolepsy Fact Sheet (2016). Retrieved from: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/fact-sheets/narcolepsy-fact-sheet
  8. Longstreth WTJr; Koepsell TD; Ton TG et al. (2007). The epidemiology of narcolepsy. SLEEP, 30(1):13-26. Retrieved from: https://drive.google.com/file/d/11Sj3cP9XTDYO2lFOlXogkndaP6-PPFwE/view?usp=sharing
  9. Leslie, M. (1999, August 11). Stanford researchers pinpoint gene that causes the sleep disorder narcolepsy. Stanford Report. Retrieved from https://news.stanford.edu/news/1999/august11/narcolepsy-811.html
  10. Wheaton, A. G., Olsen, E. O. M., & Miller, G. F. (2016). Sleep Duration and Injury-Related Risk Behaviors Among High School Students — United States, 2007–2013. MMWR. Morbidity and Mortality Weekly Report, 65(13), 337–341. doi: 10.15585/mmwr.mm6513a1. Retrieved from: https://www.cdc.gov/mmwr/volumes/65/wr/mm6513a1.htm
  11. Blackwell, J. E., Alammar, H. A., Weighall, A. R., Kellar, I., & Nash, H. M. (2017). A systematic review of cognitive function and psychosocial well-being in school-age children with narcolepsy. Sleep Medicine Reviews, 34 82–93. doi: 10.1016/j.smrv.2016.07.003. Retrieved from: https://drive.google.com/open?id=1tN4r40V3bqK1HA6t8ClnDYUmmymM4_rf
  12. Mignot, E. J. M. (2012). A Practical Guide to the Therapy of Narcolepsy and Hypersomnia Syndromes. Neurotherapeutics, 9(4), 739–752. doi: 10.1007/s13311-012-0150-9. Retrieved from: https://med.stanford.edu/content/dam/sm/narcolepsy/documents/latestnews/Neurotherapeutics20102.pdf
  13. Dauvilliers, Y., Lopez, R., & Ohayon, M. (2013). Hypersomnia and depressive symptoms: methodological and clinical aspects. BMC Medicine 11, 78. Retrieved from: https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-78
  14. Centers for Disease Control and Prevention (CDC), U.S. Department of Health and Human Services. Morbidity and Mortality Weekly Report (MMWR), 60(8) https://doi.org/10.1186/1741-7015-11-78
  15. Shahid, A. (2012). Swiss Sleepiness Scale. In STOP, THAT and One Hundred Other Sleep Scales (pp. 369–370). Springer Science Business Media, LLC. Retrieved from: https://www.med.upenn.edu/cbti/assets/user-content/documents/Stanford%20Sleepiness%20Scale.pdf doi: DOI 10.1007/978-1-4419-9893-4_91
  16. Frieden, T. R., Jaffe, H. W., & Cono, J. Indicators for Chronic Disease Surveillance Morbidity and Mortality Weekly Report (MMWR): Recommendations Report (2015). 64 (RR-1) Atlanta, GA: Center for Surveillance, Epidemiology, and Laboratory Services, Centers for Disease Control and Prevention (CDC), U.S. Department of Health and Human Services. retrieved from: https://www.cdc.gov/mmwr/pdf/rr/rr6401.pdf
  17. U.S. Department of Health and Human Services, National Institutes of Health, National Heart, Lung, and Blood Institute. Your Guide to Healthy Sleep. (2011). Retrieved from https://www.nhlbi.nih.gov/files/docs/public/sleep/healthy_sleep.pdf

A MyNarcolepsyTeam Member said:

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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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