“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.

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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

Emily,
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

Scott,
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

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.

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

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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.