5 Perspectives on Napping for Narcolepsy Patients

Exactly how, when, and for how long a person with narcolepsy should nap to manage their disorder varies. Sleep physicians, patients, and advocates detail the nuances of how to navigate a scheduled daytime sleep.

By Lindsey Nolen

A Sleep Physician

According to neurologist-sleep specialist Michael Thorpy, MB, ChB, maintaining a regular sleep schedule is the most important element of planning naps for people with narcolepsy. Thorpy, the director of the Sleep-Wake Disorders Center at the Montefiore Medical Center in Bronx, NY, says that he recommends that narcolepsy patients be in bed for a minimum of eight hours each night, have a regular wake-up time, and hold these constant for two weeks. Only then, people with narcolepsy should start experimenting with naps.

Many people with narcolepsy benefit from scheduled naps, which can relieve some of the strong pressure for sleep they may feel during daytime hours. Though duration varies, Thorpy recommends, in general, that naps stay short. “For most patients, they should first try around 15 minutes and see whether that’s sufficient to relieve the pressure for sleep,” he says, but adds that some people get relief only from prolonged naps, that is, those that are 30 minutes or longer .

As a nap lengthens, there is a greater likelihood that the patient will get into a deeper sleep state, Thorpy says. And if they enter slow-wave sleep, that increases the possibility of waking up feeling drowsy, an experience commonly known as sleep inertia.

Thorpy recommends people with narcolepsy take no more than two naps of 15 minutes each. Since patients with narcolepsy have disturbed quality sleep at night, taking excessive daytime naps can worsen their sleep disruption.

After experimenting with a 15-minute nap—using a timer—once or twice a day, patients can begin to try slightly longer naps.The naps should not exceed 30 minutes total per day.

“There is quite a lot of variability,” Thorpy says. “There are patients with narcolepsy who do prefer long naps, and sometimes even several hours in duration, although that’s sort of unusual for most patients with narcolepsy and may reflect more of a disrupted sleep-wake pattern.”

A Pediatric & Adult Sleep Physician

“Naps are something that patients have been doing whether their physician has prescribed it to them or counseled them or not,” says pediatric neurologist and sleep specialist Jose Colon, MD.

But “napping more than 40 minutes can negatively affect sleep onset in the evening,” says Colon, who is also the founder of Paradise Sleep Inc.

Colon likens naps to “sleep candy.” He doesn’t give his children candy right before dinner because then they won’t have an appetite for a nutritious meal. Similarly, sleep candy in the form of late-in-day or long naps can disrupt night-time sleep.

“With 20 minutes you get the most immediate benefit,” he says. With 40-minute naps, colon says patients have initial grogginess as they wake up but have longer periods of alertness.

He adds, “For patients that may have night shift or a circadian shift, a nap before the night shift serves as an anchor nap and helps with vigilance.”

A Health Coach

“’Sleep attacks’ are when the body makes the decision [to sleep] for a person with narcolepsy and they nap whether they want to or not. This can be very inconvenient and disruptive,” says Gina Dennis, a certified health coach, person with narcolepsy, and founder of madcapnarcolepsy.com. A better strategy can be to schedule multiple naps a day, or, in Dennis’ words, “Take the nap before the nap takes you.”

But successful napping takes practice, she says. The person must train themselves to lie down, fall asleep in a few minutes, and then wake up easily.

The routine she uses and recommends to her clients with narcolepsy is as follows.

  1. Use the restroom.
  2. Silence calls, alerts, and notifications on your phone.
  3. Set a wake-up alarm. Also set back up alarms with different tones. Every three minutes is a good rule of thumb.
  4. Use headphones to help block outside noise, optionally with white noise or binaural beats playing through them.
  5. Try to create the same environment no matter where you nap. Use the same style pillow and blanket at work or school as you do at home. If you sleep on your back at night, nap on your back too.
  6. Allot 5 to 10 minutes to fall asleep, 20 minutes to nap, and 10 minutes to wake up.
  7. Light stretches after waking can help shake off any residual drowsiness.

Treat naps as you would a prescription medication, Dennis says: Take the same dose at the same time every day.

A Patient Advocate

Monica Gow, founder and executive director of Wake Up Narcolepsy, says naps depend on the person’s schedule. How, when, and for how long a person with narcolepsy should nap depends on how that specific day differs from another, she says.

“One approach to scheduling naps is to think about what your schedule looks like for the day and what is planned, then calculate…when would be a good time to nap. It is good to schedule naps in a day, but not everything will go exactly as planned,” Gow says. “On days off from work, the napping schedule may be more frequent and relaxed/unscheduled if few/no activities are planned during the day. Unscheduled or scheduled naps may occur as a passenger in a car.”

Gow suggests patients schedule a nap for the duration that is just enough for them to get through the day and no longer. For example, a patient may plan for a 20-minute workday nap and a longer after-work nap. If the patient has napped during the day, she says they may only need a 40-minute after-work nap, but if they haven’t, an hour-and-a-half may be necessary. “If you push yourself throughout the day, you will need to take a longer nap at the end of the day,” Gow says.

A Patient

Graduate student Juliana Londoño was diagnosed with type 2 narcolepsy on her 22nd birthday. At age 24, she is now entering the workforce while wanting to keep her wellness at the forefront of her life.

Londoño credits neurologist-sleep specialist Manjula Bathini, DO, with being instrumental in helping her manage the sleep disorder.

Aware of Londoño’s hectic schedule studying clinical mental health counseling, which includes classes until 10 pm followed by an hour-long commute, Bathini has advocated for Londoño’s accommodations at both school and work.

This spring semester is the final semester of her graduate program, and London’s schedule has become even busier than usual. While she made it through about 10 weeks without daytime naps, she realized this was not sustainable. Londoño says when she pushed herself, she began to feel her body “shut down”—and knew she needed to rely on the nap flexibility extended to her by her supervisors.

These days, London typically takes a nap around 3 pm or 4 pm.

“Since my days often are 12-plus hours, a nap of 30 to 40 minutes provides me with plenty of energy to keep on moving along with my day. Dr Bathini has also recommended a nap/sleep journal to track my mood, energy levels, and attention span, along with the number of hours of sleep,” Londoño says.

“The best nap advice I have received is, ‘Take the nap.’ It sounds so simple, but it can be challenging given the demanding and fast-paced society we live in. What I have come to realize is that some need exercise, some need coffee, and I need naps.”

Lindsey Nolen is a Jacksonville, Fla-based journalist who has been writing about healthcare for over 5 years.

Photo 515805 © Daniel Dash | Dreamstime.com

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