4 Small Changes That Can Make a Big Difference for Narcolepsy Patients

Scheduling naps and other behavioral adjustments can help alleviate some of the excessive daytime sleepiness associated with the neurological sleep disorder.

By Sree Roy

People with narcolepsy may consider posting a sticky note on their work computer with this advice: Take the nap before the nap takes you.

Behavioral interventions such as scheduling naps can be a powerful complementary therapy to drug therapies in controlling a fraction of the excessive daytime sleepiness that is a cardinal symptom of narcolepsy, experts say. Here are 4 recommendations.

1. Standardize daily sleep and wake times. Gina Dennis, CHC, owner of Madcap Narcolepsy LLC, recommends waking and sleeping at the same time each day. “The body can be trained to function a little better in those time spaces,” Dennis said during a Narcolepsy Education Day in Los Angeles, one of a series of events produced by patient advocacy group Wake Up Narcolepsy. For naps specifically, she said, “Take your naps at the same time every day and for the same amount of time. Treat them like a medication, like a standard dosage.”

During a session at Virtual SLEEP 2020, sleep and obesity medicine specialist Chad Ruoff, MD, RPSGT, weighed in. Scheduled naps “can’t be underestimated,” he said.

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2. Practice good sleep hygiene. Good sleep health practices and and consistent hygiene has benefits in healthy people and those with sleep disorders alike, but the gains to people will narcolepsy can make a marked difference. Ruoff, an associate at California’s Kaiser Woodland Hills, said during the session, “Emphasize the importance of good sleep health.” For example, encourage bright light exposure in the mornings and dimming the lights at night, he said.

3. Stick with the sleep duration that helps with daytime function, but don’t exceed it. For people with narcolepsy, there can be diminishing returns with longer sleep durations. Ruoff said it can help to identify a patient’s optimal sleep duration—the point at which even if the patient slept longer, they don’t feel any better. Then advise the patient to not go over that duration, which may allow the patient to reclaim some awake time. “If someone is sleeping 12 hours a night, but if they actually did a self-study and they felt exactly the same with 10 or 11 hours, you’re giving back a lot of hours to that patient every day,” Ruoff said.

4. Manage expectations. People with narcolepsy must manage their disorder for their entire lives, and it helps to have the support and understanding of their family and friends. So consider providing information about narcolepsy to the people in your patient’s inner circle. Ruoff said, “It helps to manage expectations for loved ones around them.”

Sree Roy is editor of Sleep Review.

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