Living With Narcolepsy

Narcolepsy offers many challenges to a normal routine. The daytime sleepiness can interfere with all aspects of life, including relationships, school, work, and hobbies. The good news is that there are a variety of ways to live successfully with narcolepsy.

Stigma, mental health, and narcolepsy

Narcolepsy can undermine a person’s self-esteem and quality of life. Studies have found that young adults with narcolepsy report lower quality of life and more anxiety and depression than their peers.

It can also be hard for family and friends to understand that you do not have control over the sleepiness, exhaustion, mental fog, and memory issues. The hallucinations can be frightening. Adding to these complications, narcolepsy may be misdiagnosed as a seizure disorder, which leads to treatments that do not work.

This makes emotional support especially valuable. Managing the symptoms, the right medical team, support groups, and online communities can help.1

Reducing risks

People with narcolepsy sometimes need to take special precautions before certain activities. Many will take a short nap or take medicine before getting in the car and driving, for example. Others limit themselves to short drives, and have someone else take the wheel for longer drives.2

People who have narcolepsy with cataplexy sometimes fall or collapse after a strong emotion. If the person feels an episode coming, they can get somewhere safe. A narcolepsy service dog can also protect and support someone during an episode of cataplexy.3

Work and narcolepsy

You are not required to disclose your narcolepsy to an employer. But if you do not inform your supervisor, your sleepiness may be seen as laziness or lack of motivation. Also, your company may be required to make reasonable accommodations for you under the Americans With Disabilities Act. You may be able to manage daytime sleepiness through timing of medicine, getting a short nap during the morning or afternoon, or having the flexibility to work longer hours to make up for time lost to naps.4

School and narcolepsy

Sleepiness, poor mood, and problems concentrating are common in people with narcolepsy. All of these can impact school performance, especially during tests and in the classroom. Parents may need to work with the school to get special educational plans created for their child. These special plans can cover everything from taking medicines at school to accommodations for short naps during the day.5

Sleep habits that help with narcolepsy

If you have narcolepsy, the first thing you doctor will probably talk to you about are your sleep habits. This is also called sleep hygiene. Common suggestions for sleep habits that can improve narcolepsy symptoms include:6,7

  • Schedule short naps of 15 to 20 minutes before 2 p.m. to 3 p.m.
  • Limit long periods of sitting still by taking short walks or standing during meetings or class
  • Avoid sedating drugs like some allergy or depression medicines
  • Use caffeine to stay awake but not after 4 p.m.
  • Get enough nighttime sleep

Exercise and narcolepsy

Regular exercise can help people with narcolepsy sleep better at night and avoid gaining weight, which is common with narcolepsy. You should get at least 20 minutes of exercise each day.8

Smoking and narcolepsy

Smoking and vaping can interfere with sleep because nicotine is a stimulant. If you have narcolepsy, your doctor may recommend that you stop smoking as one of many lifestyle changes to improve your symptoms.6

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Written by: Jessica Johns Pool | Last reviewed: June 2020