Narcolepsy

This content was created by the National Sleep Foundation

NATIONAL SLEEP FOUNDATION — The most common way to treat narcolepsy is often with a combination of medication and behavioral changes. These lifestyle changes can include good sleep habits, napping, knowing how to stay alert, and developing self-awareness.

Maintain good sleep habits. Keep a regular bedtime, make your room cool and dark (use darkening shades or curtains, remove any electronic devices from your room, and use ear plugs if necessary), and avoid heavy meals or alcohol before bed. If you can’t sleep in the middle of the night, leave your bed to read a book or do another non-stimulating activity until you feel drowsy again. Do not look at your cellphone, computer or other electronic screen during the night.

Take smart naps. Strategic naps can help people with narcolepsy feel refreshed and productive. The best naps are 15-20 minutes and spaced throughout the day, without happening too close to bedtime. The point in the day when people often feel most sleepy is 2:00 – 3:00 p.m. If it’s appropriate, find a place to nap at work and explain your condition to your co-workers. Napping can increase your work productivity.

Stay active. Sitting for long periods of time can increase sleepiness. Stand up and take walks, go outside, sit near a window or in the back of class so you can stand up periodically. If you can use an adjustable standing desk, or a yoga ball to sit on, this may help you stay alert.

Get to know your triggers. What are the factors that cause you to be most drowsy? Consider time of day, activities, temperature, and light. Are you more likely to experience cataplexy when you’re very tired or during a strong emotion? It helps to know your triggers and manage them so you feel more in control.

Seek counseling. You don’t have to do this alone. Counseling is an important aspect of narcolepsy treatment. Talk to an individual therapist and/or join a support group (whether online or in person). Anxiety, isolation, or self-esteem issues can arise because of narcolepsy symptoms and talking about this with others helps you learn, take control, and not feel alone.

Diet, Alcohol, and Exercise

Heavy meals and meals high in carbohydrates can make anyone feel drowsy—this can be especially true if you have narcolepsy. We all have a natural dip in alertness in the mid to late afternoon, so eating a heavy meal in the middle of the day can add to a natural state of sleepiness. A heavy meal, or a spicy one, before bed is also likely to disrupt your sleep.

Instead, try to eat smaller meals that center around vegetables and protein, rather than lots of pasta and bread. For example, a salad with lentils or shrimp will leave you with more energy than a bowl of spaghetti. Here’s a sample menu for the day:

Breakfast: Coffee and oatmeal or homemade granola with fruit

Snack: Almonds or walnuts and berries

Lunch: Salad with grilled chicken or other protein

Snack: Chopped raw vegetables with hummus or apple slices with almond butter

Dinner: Fish with rice and vegetables

Alcohol can disturb your sleep, so try to avoid drinking alcohol, including wine, before or close to bed. Even though you may feel drowsy after drinking alcohol, it makes you more likely to wake up during the night and can worsen the quality of your sleep. If you don’t sleep well, you’re more likely to feel drowsy and have other narcolepsy symptoms the next day.

Engage in aerobic exercise on a regular basis. Whether it’s light, moderate, or vigorous, a workout will help you stay alert and also improve the quality of your sleep at night. A workout routine could involve going to the gym at least three times per week, or taking up a sport like swimming or tennis. Even if you’re unable to do strenuous exercise, a brief daily walk will give you energy. Take a 15-minute walk before lunch or on an afternoon break. Take two short walks if you can accommodate this into your daily routine.

Medications for Sleepiness

These medications treat sleepiness and unintentional napping. In some cases, your doctor may recommend a combination of these medications.

Modafinil and armodafinil are popular medications for improving alertness and reducing feelings of sleepiness. They are thought to act on dopamine, a chemical in the brain involved in waking. Taking one of these medications may help you feel more awake and productive during the day.

Amphetamines are also used to treat daytime sleepiness and improve alertness. There are a number of types of amphetamines, so talk to your doctor and find one that works well and has the fewest side effects. These medications also work by acting on dopamine, as well as other chemicals in the brain. There are short-acting and long-acting amphetamines and you should talk to your doctor about how and when to take these.

Sodium Oxybate is a derivative of a naturally occurring chemical in the brain. This medication is taken in liquid form to improve nighttime sleep, resulting in better daytime alertness and reduced cataplexy. Research indicates sodium oxybate reduces feelings of daytime drowsiness, although the mechanism behind this not well understood.

Safety and Side Effects of Narcolepsy Medications

Some of the medications prescribed for narcolepsy have potential side effects. Stimulants can cause nervousness, headaches, insomnia, and mood changes. Stimulants have the potential for abuse, so they must be considered carefully. If you and your doctor decide they are the best choice, it’s important to take them exactly as prescribed in terms of timing and dosage. Stimulants may not be indicated for people who have cardiovascular disease.

Antidepressants can cause weight gain, nausea, mood changes, sexual dysfunction, or blood pressure changes. People taking antidepressants should be aware of the potential for “rebound cataplexy” if they abruptly discontinue these medications. Sodium oxybate can cause nausea, sleepiness, and mood changes.

It’s important to discuss the dosage and timing with your doctor and keep your doctor informed about side effects. Take your medications exactly as prescribed and if you have any hesitations or concerns, bring these up with your doctor. It is important for patients to completely read the package insert and ask the health care provider questions if they do not understand.

The goal is to take medications that improve your symptoms and make you feel better and more productive, with the fewest side effects. This can take time and may require adjusting medications and trying new ones until you and your doctor find the right combination. Talk to your doctor before you abruptly stop taking a medication, as there can be rebound and withdrawal effects.