“Transitioning to a new normal can be difficult.”– Matt

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Navigating Narcolepsy Through Changing Times

From workplace transitions to holiday stress, adjusting to a different daily routine can be hard for people living with narcolepsy. Some may see a change in their symptoms or struggle to adapt to a new routine. Learn some of the timely tips that Matt and Katie have found helpful for living with narcolepsy during challenging times.

Sleep wake schedule

Keep a regular sleep-wake schedule.

The hardest part of every day is waking up and getting moving. It’s really helpful for me to keep a consistent schedule, even if I don’t have an activity planned for earlier on in the day.

– Matt, living with narcolepsy

Communicate

Communicate your needs to those you live with.

Now that I'm spending more time with my kids, it's up to me to make sure that I communicate with them about what my napping requirements are.

– Matt, living with narcolepsy

Prioritize

Prioritize important tasks when you are most awake and alert.

I prioritize my mornings for important work because that is the time when I feel most focused. I experience bouts of sleepiness and brain fog in the afternoons, so I leave them open so I can nap and take care of myself.

– Katie, living with narcolepsy

Exercise

Get some exercise.

Some basic walking, some basic yoga exercises that you can do at home, those are all options that will help improve your symptoms and help you overall improve your health.

– Matt, living with narcolepsy

Naps

Schedule short naps throughout the day.

I set multiple alarms for scheduled naps throughout the day. Sometimes as little as 15 to 20 minutes is enough for me to help feel refreshed.

– Matt, living with narcolepsy

Talk

Talk to your healthcare provider about any changes in your symptoms.

Feeling heard and understood is important. Many symptoms of narcolepsy can make you feel alone, but when your doctor tells you that it’s perfectly normal, you feel better.

– Katie, living with narcolepsy

Telemed

Opt for telemedicine appointments when possible and treat them just like in-person appointments.

If you are trying to decide between an in-person or telemedicine visit, determining how comfortable you are discussing your narcolepsy via the computer instead of in person is the most important factor.

– Katie, living with narcolepsy

Kind

Be kind to yourself when transitioning to a different working environment.

Building up work capacity takes time after being sedentary for prolonged bouts.

– Matt, living with narcolepsy

Finding balance in my physical, mental, emotional, and social health has been extremely helpful in navigating through these times.

Matt, living with narcolepsy

NAVIGATING NARCOLEPSY THROUGH CHANGING TIMES

Download this handout to learn how others living with narcolepsy have managed during challenging times.

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NAVIGATING NARCOLEPSY THROUGH CHANGING TIMES

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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 naturally occurring chemical in the brain that helps maintain wakefulness.

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

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

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.”

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.