“It’s amazing to communicate with someone who knows what I'm going through.” – Scott

Advancements in the understanding of narcolepsy are happening. Be the first to know. Sign Up Now

Advancements in the understanding of narcolepsy are happening. Be the first to know.

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Every Story About Narcolepsy Is Different

Hearing personal stories about the impact of symptoms can help people living with narcolepsy, their family, and their friends better understand the disorder.

All people living with narcolepsy have their own story about their experience with the disorder. For some, having narcolepsy means missing or avoiding social events. For others, it means struggling to stay awake, or performing poorly at work or in school.

Get to know people living with narcolepsy through stories about how the disorder has had an impact on their everyday life and how they have learned to manage day to day with their symptoms.

Scott,
48 years old

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

Scott, a stay-at-home dad, 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.

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What is the biggest impact of narcolepsy?

How did narcolepsy affect your relationships?

Nicki,
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 does cataplexy feel like?

How has narcolepsy changed your life?

What is the day-to-day impact of EDS?

What is the day-to-day impact of narcolepsy?

Find out now »

Support is available to help people living with narcolepsy manage their symptoms.

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Performance of routine tasks without awareness or memory.

Difficulty focusing or concentrating.

Brief loss of muscle tone with retained awareness, often triggered by strong emotions.

Frequent shifts between different states of sleep and wakefulness at night.

The inability to stay awake and alert during the day; a constant need for sleep or unintentionally falling asleep.

A chemical in the brain that helps maintain wakefulness.

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

Dream-like events that occur when falling asleep. Called hypnopompic hallucinations if they occur when waking up.

A chemical in the brain that helps maintain wakefulness and prevent non-REM sleep and REM sleep from occurring at the wrong time.

Unintentionally falling asleep due to excessive daytime sleepiness; “sleep attacks.”

Restorative sleep state with decreased muscle tone.

Occurs at night and includes vivid dreams; muscles are not active to prevent people from acting out dreams.

Daytime and evening habits to improve sleep.

Brief total loss of voluntary muscle control when falling asleep or while waking up.

People with type 1 narcolepsy can be diagnosed by their cataplexy or low levels of hypocretin.

The cause of type 2 narcolepsy is unknown.