“Don’t let your diagnosis define you.” – Ijeoma

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Living with Narcolepsy

Living better with narcolepsy is possible.

Narcolepsy is a rare disorder, and the journey to diagnosis can be long and complex. You are not alone. Up to 200,000 people in the United States are living with narcolepsy, and of them two-thirds have cataplexy. Symptoms can have a significant impact on day-to-day life, but managing narcolepsy is possible.

Getting to know narcolepsy is about understanding the impact of symptoms and finding ways to live well with the disorder. A healthy lifestyle, a good healthcare provider, and a strong support network can help you face the challenges that come along with a diagnosis of narcolepsy.

Emily Diagnosis Video
Watch Video

People With Narcolepsy Are Often Misunderstood

Emily, 28 years old
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 Diagnosis Video
Watch Video
Montage Video of Personal Stories
Watch Video
Emily Diagnosis Video

Montage Video of Personal Stories

People With Narcolepsy Are Often Misunderstood

Emily, 28 years old
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.

Personal Stories of Living with Narcolepsy

Ijeoma, Sharon, Leah, & Katie

People with narcolepsy share their personal stories, perspectives, and insights on living with narcolepsy. They share their thoughts on living a full and productive life with narcolepsy.

Narcolepsy doesn't rule my life, but it is a part of my life.

Emily, 28 years old, living with narcolepsy

Getting to know narcolepsy is about understanding the impact of symptoms and finding ways to live well with the disorder. A healthy lifestyle, a good healthcare provider, and a strong support network can help you face the challenges that come along with a diagnosis of narcolepsy.

Montage Video of Personal Stories
Watch Video

Personal Stories of Living with Narcolepsy

Ijeoma, Sharon, Leah, & Katie

People with narcolepsy share their personal stories, perspectives, and insights on living with narcolepsy. They share their thoughts on living a full and productive life with narcolepsy.

Healthy Habits for Living With Narcolepsy

  • Maintain a regular sleep-wake schedule
  • Exercise regularly
  • Schedule daytime naps
  • Avoid caffeine in the evening
  • Avoid alcohol
  • Avoid smoking
  • Eat a healthy dinner several hours before bedtime and avoid late-night snacks
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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 dream-like experiences that occur while 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 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.