“Narcolepsy takes your world and sort of flips it upside down.” – Scott

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Every Story About Narcolepsy Is Different

Hearing stories from people living with narcolepsy can help when evaluating for the disorder in clinical practice.

All people living with narcolepsy have their own story about their experience with the disorder. For some of your patients, having narcolepsy may mean missing or avoiding social events.1-4 For others, it may mean struggling to stay awake, or performing poorly at work or in school.4,5

Get to know people living with narcolepsy through stories about how the disorder has had an impact on their everyday life. Knowing these real stories may help with recognizing symptoms in your patients and reduce the burden of narcolepsy.

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People Living With Narcolepsy Are the Same as Everyone Else

Narcolepsy Doesn’t Rule Her Life

Living With Narcolepsy Day-to-Day

Support System for People With Narcolepsy

28 years old

Bookkeeper and competitive snowmobiler, living with narcolepsy

Emily knows those living with narcolepsy are no different from anyone else. Listen to her story as she shares how narcolepsy symptoms can be mislabeled by others who don’t understand the disorder.

Emily shares how narcolepsy is a part of her life, but doesn’t rule it. Hear about what symptoms she experiences and how she lives her life with narcolepsy.

Hear the narcolepsy tips and tricks Emily has to share about the small changes she has made to help her day-to-day.

Hear from Emily as she shares the importance of people with narcolepsy having a support system and who she includes in hers.

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Biggest Impact of Narcolepsy

How Narcolepsy Affects Relationships

Advice for Living With Narcolepsy

Narcolepsy With Cataplexy

48 years old

Stay-at-home dad, living with narcolepsy with cataplexy

Scott shares why he believes narcolepsy changed the way his friends and family saw him and how the disorder set the course for his life today.

Living with narcolepsy “drove a wedge” between Scott and his parents.

Scott shares his experience living with narcolepsy and offers advice to others living with the disorder. Hear his thoughts about finding support, the right doctor, as well as the inner resilience needed to manage life with narcolepsy.

Learn about Scott’s cataplexy triggers and hear how he describes complete loss of muscle control, as well partial cataplexy that he describes as feeling like a “little short circuit.”

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What Cataplexy Can Feel Like

Narcolepsy Changed My Life

Excessive Daytime Sleepiness (EDS) and Its Daily Impact

29 years old

Philosophy graduate student, living with narcolepsy with cataplexy

Nicki describes what triggers her cataplexy and what it feels like when she loses muscle control.

Nicki, whose cataplexy is triggered by negative emotions, shares how she has adapted her disposition and tries to stay positive to avoid attacks.

Excessive daytime sleepiness has significantly affected Nicki’s life, especially due to “surprise naps” that have caused her to sleep through her own birthday celebration.

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What topics should you discuss with your patients when evaluating for EDS or cataplexy and other symptoms?

There's more to know »
  1. Overeem S. The clinical features of cataplexy. In: Baumann CR, Bassetti CL, Scammell TE, eds. Narcolepsy: Pathophysiology, Diagnosis, and Treatment. Springer-Verlag New York; 2011:283-290.
  2. Daniels E, King MA, Smith IE, Shneerson JM. Health-related quality of life in narcolepsy. J Sleep Res. 2001;10(1):75-81.
  3. 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.
  4. Thorpy M, Morse AM. Reducing the clinical and socioeconomic burden of narcolepsy by earlier diagnosis and effective treatment. Sleep Med Clin. 2017;12(1):61-71.
  5. American Academy of Sleep Medicine. International Classification of Sleep Disorders. 3rd ed.; 2014.

Performance of routine tasks without awareness.

Sudden and brief loss of muscle strength or tone, often triggered by strong emotions. Narcolepsy with cataplexy is known as type 1 narcolepsy.

Complete collapse to the ground; all skeletal muscles are involved.

Only certain muscle groups are involved.

Biological clock mechanism that regulates the 24-hour cycle in the physiological processes of living beings. It is controlled in part by the SCN in the hypothalamus and is affected by the daily light-dark cycle.

Frequent inappropriate transitions between states of sleep and wakefulness.

The inability to stay awake and alert during the day.

A neurotransmitter that supports wakefulness. The TMN is the only source of histamine in the brain.

Vivid, realistic, and frightening dream-like events that occur when falling asleep.

A neuropeptide that supports wakefulness and helps control non-REM sleep and REM sleep.

Primary brain region for regulating the timing of sleep-wake states.

Unintentionally falling asleep due to excessive daytime sleepiness.

Brief, unintentional lapses into sleep or loss of awareness.

A validated objective measure of the tendency to fall asleep in quiet situations.

A state of sleep when muscle tone is decreased. Deep stages help to restore the body.

Overnight study used to diagnose sleep disorders by monitoring sleep stages and cycles to detect disruptions of a normal sleep pattern.

Normally occurs at night and includes vivid dreams. Also known as “paradoxical sleep.”

Daytime and evening habits and routines to help improve nighttime sleep.

Brief loss of control of voluntary muscles with retained awareness.

Sleep-onset REM period.

People with type 1 narcolepsy have low levels of hypocretin.

Narcolepsy without cataplexy; the cause of type 2 narcolepsy is unknown.