“Be honest with your doctor about what you're experiencing.”– Emily

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Preparing for Appointments

Preparation and open communication can help you get the most out of visits with your healthcare provider.

Letting your healthcare provider know what’s going on in your life and how your symptoms impact you day to day can help make your visit a successful one.

Discover how other people living with narcolepsy prepare for their appointments
  • 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. – 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.
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Preparing for Your Next Doctor Appointment if Diagnosed With Narcolepsy

Matt, Leah, Ijeoma, Katie, & Sharon

Living with narcolepsy can be very challenging. Hear people living with narcolepsy explain their approach to working with their physician.

Living with narcolepsy can be very challenging. Hear people living with narcolepsy explain their approach to working with their physician.

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Communication is a two-way street. In order for me to get the most out of my appointments, I have to put in the effort to make sure that I'm doing my part to communicate.

Matt

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Guide to Telemedicine

Feel confident about your next virtual appointment. Use this guide to learn what to expect and how to prepare.

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Guide to Telemedicine

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Vivid dream-like experiences that occur while falling asleep or while waking up.

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

People with type 1 narcolepsy can be diagnosed by their cataplexy or low levels of hypocretin (also known as orexin).

The cause of type 2 narcolepsy is unknown.

Restorative sleep state with decreased muscle tone.

Daytime and evening habits to improve sleep.

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

Also known as orexin, hypocretin is a naturally occurring 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.”

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

A naturally occurring chemical in the brain that helps maintain wakefulness.

Vivid dream-like experiences that occur while falling asleep or while waking up.

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

Difficulty focusing or concentrating.

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

Performance of routine tasks without awareness or memory.