Sleep hygiene for people with narcolepsy

Narcolepsy is a neurological condition that disrupts the body’s ability to regulate sleep/wake cycles. Also known as the circadian rhythm or circadian clock, sleep/wake cycles are the repeating sequence of waking hours and sleeping hours.

The sleep/wake cycle is a complex biological process that involves the brain and multiple other organs. It responds to external stimuli, including natural light, artificial light, stress, and caffeine (to name a few).

In other words, many factors can affect the sleep/wake cycle. Minimizing and controlling those factors are often an important part of a treatment plan for narcolepsy.

How narcolepsy disrupts the sleep/wake cycle

The causes of narcolepsy are not fully understood, but medical researchers do have a picture of what is happening in the brain when a person has narcolepsy. The exact mechanisms differ depending on whether a person has narcolepsy type 1 or narcolepsy type 2.

Neurotransmitters are chemicals that regulate activity in the nervous system (and in turn, processes throughout the body that are regulated by the nervous system). Multiple neurotransmitters regulate the body’s sleep/wake cycles.

One neurotransmitter important to normal sleep/wake cycle functioning is orexin (also known as hypocretin).

In people who have narcolepsy type 1, there is a complete or near-total loss of the neurons in the brain that contain this neurotransmitter. It is less clear what is happening in the brain when a person has narcolepsy type 2, but the condition is also related to disruptions in orexin functioning.

Narcolepsy type 1 and narcolepsy type 2

Narcolepsy can be divided into multiple subtypes based on the clinical features and symptoms. There are two main types, called type 1 and type 2.

Both main types can cause excessive daytime sleepiness, fragmented nighttime sleep, sleep attacks (episodes of an overwhelming need to sleep), hallucinations, and sleep paralysis. Symptoms can vary from person to person.

People with narcolepsy type 1 also experience an additional symptom, called cataplexy. This involves episodes of sudden muscle weakness or muscle paralysis. However, some people initially diagnosed with narcolepsy type 2 eventually develop cataplexy.

Why sleep hygiene matters when managing narcolepsy

Narcolepsy is managed with a combination of medications and behavioral modifications. People with narcolepsy often need to take different medications to promote alertness, improve sleep quality, and treat other symptoms.

Behavior modifications include habits that help promote alertness during waking hours, like strategic intake of caffeine or well-timed naps. These also include habits that help promote restful sleep at night, which is sometimes referred to as “sleep hygiene.”

Strategies for sleep hygiene for narcolepsy

• Have a consistent bedtime. Go to bed around the same time every night and wake up around the same time every morning. Maintain this schedule on weekdays and weekends.
• Have a regular bedtime routine. A regular bedtime routine can help signal to your mind and body that it’s time for sleep. Include a relaxing activity like reading a book or meditating.
• Avoid foods and beverages that interfere with sleep. Avoid meals within three hours of bedtime, especially large and/or carbohydrate heavy meals.
• Avoid substances that interfere with sleep. Caffeine should be consumed intentionally and avoided during the times of day where it may interfere with sleep. Avoid alcohol, especially in the evenings—and discuss alcohol consumption and its potential impact on sleep and medications with your healthcare provider. If you smoke or use tobacco products, quit.
• Reduce screen time before bed. Blue light from phone, tablet, and computer screens stimulates your brain, making it more difficult to sleep. Put away screens at least 30 minutes before bedtime.
• Set up your bedroom for sleep. Make sure your room is dark and cool. Consider using a white noise machine or a fan to drown out disruptive noises.
• Only use a bed for sleep and intimacy. Your brain should recognize your bed as a place for intimacy and rest. Work, scrolling, TV, or eating in bed can interfere with your nightly routine.

Remember, narcolepsy is a different experience for everyone. Your healthcare providers will be your best source of information about your diagnosis, your treatment, and how to address the challenges of living with narcolepsy.