Woman with narcolepsy type 1 sleeping in bed

IT TAKES

understanding the science, symptoms, and impact

TO SUPPORT YOUR PATIENTS WITH THEIR NT1

Answers to frequently asked questions about narcolepsy type 1

Narcolepsy type 1, called NT1, is a rare, chronic neurological condition. It is thought to be caused by a disruption of orexin signaling, which regulates the sleep-wake cycle. NT1 is characterized by excessive daytime sleepiness (EDS) and cataplexy, as well as hallucinations, disrupted nighttime sleep, and sleep paralysis.1-4

NT1 is characterized by 5 symptoms1,5:

  • Excessive daytime sleepiness (EDS): persistent sleepiness, tiredness, or fatigue that can return quickly after sleep or naps
  • Cataplexy: the sudden and temporary loss of muscle tone
  • Disrupted nighttime sleep: poor sleep quality due to a lack of sleep continuity
  • Hallucinations: vivid, dreamlike states (auditory or visual) that happen when falling asleep or immediately when waking up
  • Sleep paralysis: the inability to move when falling asleep or immediately after waking up, which is caused by the intrusion of rapid eye movement (REM) sleep into the wake state

Cataplexy—the sudden and temporary loss of muscle tone—is a hallmark symptom of narcolepsy type 1 (NT1). It can happen any time that rapid eye movement (REM) sleep intrudes into the awake state and can be brought on by laughter or strong emotions, such as elation or anger. Cataplexy can be localized, such as to the limbs, head, or neck, or affect the entire body.6

Manifestations of cataplexy can be different in each person, especially between children and adults. Some people with narcolepsy type 2 (NT2) will develop cataplexy later in their disease, making the identification of this symptom critical, but difficult.6

The hallmark symptoms of NT1—excessive daytime sleepiness (EDS), cataplexy, disrupted nighttime sleep, hallucinations, and sleep paralysis—have been shown to negatively affect patients’ quality of life. The effects of NT1 can extend across a range of normal daily functioning, including1,7-9:

  • Not feeling well rested and refreshed
  • Difficulty enjoying everyday activities, like exercise
  • Struggling to overcome the cognitive impairment that makes work or school difficult
  • Trouble building or maintaining relationships
  • Difficulty managing everyday responsibilities, like parenting, cooking, cleaning, and self-care

Narcolepsy type 1 is thought to be caused by a disruption of orexin signaling, which regulates the sleep-wake cycle. Orexin, also known as hypocretin, is a neuropeptide released by orexinergic neurons located in the hypothalamus. It is responsible for stabilizing the sleep-wake cycle. Orexin neuropeptides project deep throughout the brain to regions involved in cognition and attention, mood, muscle tone, and energy.2,3,5

Orexin, also known as hypocretin, is a neuropeptide released by orexinergic neurons located in the hypothalamus. It is responsible for stabilizing the sleep-wake cycle. Orexin neuropeptides project deep throughout the brain to regions involved in cognition and attention, mood, muscle tone, and energy.2,3,5

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References

1. Krahn LE, Zee PE, Thorpy MJ. Current understanding of narcolepsy 1 and its comorbidities: what clinicians need to know. Adv Ther. 2022;39(1):221-243. doi:10.1007/s12325-021-01992-4 2. Toor B, Ray LB, Pozzobon A, Fogel SM. Sleep, orexin and cognition. Front Neurol Neurosci. 2021;45:38-51. doi:10.1159/000514960 3. De Luca R, Nardone S, Grace KP, et al. Orexin neurons inhibit sleep to promote arousal. Nat Commun. 2022;13(1):4163. doi:10.1038/s41467-022-31591-y 4. Lipford MC, Ip W, Awasthi S, et al. Demographic characteristics and comorbidities of patients with narcolepsy: a propensity-matched cohort study. Sleep Adv. 2024;5(1):zpae067. doi:10.1093/sleepadvances/zpae067 5. Mahoney CE, Cogswell A, Koralnik IJ, Scammell TE. The neurobiological basis of narcolepsy. Nat Rev Neurosci. 2019;20(2):83-93. doi:10.1038/s41583-018-0097-x 6. Szabo ST, Thorpy MJ, Mayer G, Peever JH, Kilduff TS. Neurobiological and immunogenic aspects of narcolepsy: implications in pharmacotherapy. Sleep Med Rev. 2019;43:23-36. doi:10.1016/j.smrv.2018.09.006 7. Maski K, Steinhart E, Williams D, et al. Listening to the patient voice in narcolepsy: diagnostic delay, disease burden, and treatment efficacy. J Clin Sleep Med. 2017;13(3):419-425. doi:10.5664/jcsm.6494 8. Ortiz LE, Morse AM, Krahn L, et al. A survey of people living with narcolepsy in the USA: path to diagnosis, quality of life, and treatment landscape from the patient's perspective. CNS Drugs. 2025;39(suppl 1):S23-S36. doi:10/1007/s40263-024-01142-8 9. Davidson RD, Biddle K, Nassan M, Scammell TE, Zhou ES. The impact of narcolepsy on social relationships in young adults. J Clin Sleep Med. 2022;18(2):2751-2761. doi:10.5664/jcsm.10212