Frequently Asked Questions About Narcolepsy

Narcolepsy is a rare chronic neurologic disorder that affects the brain’s ability to regulate sleep-wake states,1-4 causing potentially disabling symptoms such as excessive daytime sleepiness and cataplexy.5-7 Symptoms also include hypnagogic/hypnopompic hallucinations and sleep paralysis—manifestations of REM sleep that occur during the transitions between wake and sleep—as well as sleep disruption.1,3,5 The prevalence of narcolepsy in the United States is approximately 1 in 2000.3

Symptoms of narcolepsy may overlap with symptoms of other medical conditions, potentially leading to a misdiagnosis and/or delayed diagnosis3,8-10 In a physician survey and retrospective chart review study of 252 patients with narcolepsy, 60% of patients had initially received a misdiagnosis of another disorder. The most common misdiagnoses included depression (~31%), insomnia (~18%), and obstructive sleep apnea (OSA) (~13%).8

One study found that patients with narcolepsy were approximately 2 times more likely to have comorbid heart diseases compared to a matched general population sample.11 Increased frequencies of certain comorbid conditions, including hypertension, obesity, diabetes, and hypercholesterolemia, have been observed in patients with narcolepsy compared with control subjects.11,12 A study demonstrated that patients with narcolepsy had increased odds at least twice those of control subjects, of having stroke, heart failure, or renal failure, and increased odds of having myocardial infarction or cardiac arrest that were each more than 1.5 times those of controls.12 These comorbid conditions may further complicate both diagnosis and disease management.12

Healthcare providers should balance efficacy, managing adverse effects, and development of tolerance to medications, as well as consider comorbidities when developing a management plan.13

  1. Scammell TE. The neurobiology, diagnosis, and treatment of narcolepsy. Ann Neurol. 2003;53(2):154-166.
  2. Rosenberg R, Kim AY. The AWAKEN survey: knowledge of narcolepsy among physicians and the general population. Postgrad Med. 2014;126(1):78-86.
  3. Ahmed I, Thorpy M. Clinical features, diagnosis and treatment of narcolepsy. Clin Chest Med. 2010;31(2):371-381.
  4. National Institute of Neurological Disorders and Stroke. Narcolepsy fact sheet. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet. Accessed November 10, 2020.
  5. American Academy of Sleep Medicine. Central disorders of hypersomnolence. In: The International Classification of Sleep Disorders – Third Edition (ICSD-3) Online Version. Darien, IL: American Academy of Sleep Medicine; 2014.
  6. Dauvilliers Y, Siegel JM, Lopez R, Torontali ZA, Peever JH. Cataplexy—clinical aspects, pathophysiology and management strategy. Nat Rev Neurol. 2014:10(7):386-395.
  7. Overeem S, van Nues SJ, van der Zande WL, Donjacour CE, van Mierlo P, Lammers GJ. The clinical features of cataplexy: a questionnaire study in narcolepsy patients with and without hypocretin-1 deficiency. Sleep Med. 2011;12(1):12-18.
  8. Carter LP, Acebo C, Kim A. Patients’ journeys to a narcolepsy diagnosis: a physician survey and retrospective chart review. Postgrad Med. 2014;126(3):216-224.
  9. Luca G, Haba-Rubio J, Dauvilliers Y, et al; European Narcolepsy Network. Clinical, polysomnographic and genome-wide association analyses of narcolepsy with cataplexy: a European Narcolepsy Network study. J Sleep Res. 2013;22(5):482-495.
  10. Thorpy MJ, Krieger AC. Delayed diagnosis of narcolepsy: characterization and impact. Sleep Med. 2014;15(5):502-507.
  11. Ohayon MM. Narcolepsy is complicated by high medical and psychiatric comorbidities: a comparison with the general population. Sleep Med. 2013;14(6):488-492.
  12. Black J, Reaven NL, Funk SE, et al. Medical comorbidity in narcolepsy: findings from the Burden of Narcolepsy Disease (BOND) study. Sleep Med. 2017;33:13-18.
  13. Abad VC, Guilleminault C. New developments in the management of narcolepsy. Nat Sci Sleep. 2017;9:39-57.