“I’m a big believer in no broken dreams” – Katie
Tips for Living with Narcolepsy
People living with narcolepsy share their experiences.
Listening to stories about challenges and successes from other people living with narcolepsy may make a difference. A group of people living with narcolepsy share what has helped them make the most out of visits to their healthcare providers and how they have built their support networks.
Preparing for an Appointment
- Be an advocate for yourself. — Leah
- Make a list of questions and/or concerns before your visit. — Katie
- Bring someone to your appointment who can help advocate or remind you of what you wanted to say. — Sean
- A spouse or close friend may also recognize symptoms (for example, partial cataplexy) that people living with narcolepsy have not noticed themselves.
- Track your symptoms, such as cataplexy. — Ijeoma
- Tell your healthcare provider about anything unusual that you experience, even if you do not suspect it is a symptom. Some potential symptoms of narcolepsy may not be obviously associated with the disorder.
Finding Your Support Network
- Find the right sleep specialist. — Scott
- Connect with people who have been diagnosed, either online or in person. — Sharon
- Having narcolepsy can leave you feeling self-conscious in the workplace. Strategic disclosure was better than allowing someone the opportunity to label me. — Ijeoma
- Being open and honest with your friends and family is incredibly important. — Emily
- Find a counselor who you can speak candidly with. — Matt
Tips for Daily Living With Narcolepsy
Ijeoma, Matt, Sean, and Leah
Hear tips for daily living with narcolepsy from people who have the disorder. From building a daily routine to practicing mindfulness, people living with narcolepsy share how they have learned to manage their symptoms day to day.
One bad day is not a bad lifetime. Having a bad day doesn’t make you less of a human. You’re still powerful. And you’re not alone.
Sharon, 43 years old, living with narcolepsy with cataplexy
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.