Self-Care

Many people with narcolepsy, when adequately treated, can live normal lives.

-Dr. Douglas Kirsch

Narcolepsy can make people feel as if their lives have unraveled, but with optimal treatment, the disorder is manageable, and most people can lead productive lives. Treatment usually consists of two main approaches: behavioral strategies (such as short naps to reduce sleepiness and staying active to keep alert), plus carefully chosen medications to improve alertness and cataplexy.

Behavioral strategies

Most people with narcolepsy need medications to feel more alert, but there are several things you can do for yourself to increase alertness. Many people find the following suggestions helpful in establishing a successful routine:

• Take daytime naps. Most people with narcolepsy find a brief nap refreshing, with improved alertness for one to three hours afterwards. Naps should be limited to 15–20 minutes, as it can be difficult to wake from the deep sleep of a long nap, and an extended nap in the afternoon may make it harder to fall asleep at night. Try to schedule the nap around the time you find it most difficult to stay awake; for many people this is about 2–3 p.m. If you have severe sleepiness, an additional nap in the late morning may also be helpful. To improve their alertness, some people with narcolepsy find it helpful to take a nap before driving.

Dr. Scammell talks about the value of naps in
treating narcolepsy.

• Stay active. Sitting still for long periods can make anyone a bit drowsy, and this is doubly so for people with narcolepsy. A brief walk often improves alertness. Students may want to sit toward the back of the class so they can stand up and move around to stay alert.
• Establish good sleep habits. Almost everyone feels sleepy after a poor night’s rest, and this is especially true for people with narcolepsy. How much sleep is optimal for you? How much do you sleep on a quiet weekend or a long vacation? Most adults need about 8 hours of sleep, and growing teens often need 9–10 hours of sleep. The following tips may be helpful when trying to establish good sleep habits:
  • Set consistent times to go to sleep, and get up so your body and brain get into a regular routine.
  • Keep your bedroom quiet and comfortable. Keep any distracting electronic devices, such as a cell phone, computer, or TV, out of the bedroom.
  • If you do wake during the night, avoid stimulating activities such as checking email or watching TV. Some people find it easier to get back to sleep if they listen to quiet music or read a magazine for 10 minutes.
  • If you need to take a wake-promoting medication in the afternoon, ask your doctor about taking a short-acting form so the medication has worn off by bedtime.
  • Avoid stimulants such as coffee in the late afternoon and evening.

• Find more tips for improving sleep at Healthy Sleep's Twelve Simple Tips to Improve Your Sleep

• Avoid sedating medications and heavy meals. Some medications, including many used for allergies, depression, anxiety, or seizures, can cause or increase sleepiness. If you are taking other medications, talk with your doctor about whether any of them may be a concern. Some people with narcolepsy feel especially drowsy after eating a big meal, particularly one rich in carbohydrates, so think about making your meals smaller.
• Consider your caffeine use. Some people with narcolepsy find coffee or other caffeinated beverages helpful to staying awake. For others, coffee is ineffective, or, in combination with stimulant medications, it can cause jitteriness, diarrhea, anxiety, or a racing heart. If coffee is part of your daily routine, it is best to avoid drinking it after 4 p.m., as the caffeine can make it harder to get enough sleep at night.

Additional ideas for staying awake at school and while studying can be found in Tips for Teens with Narcolepsy: Improving Alertness (PDF).

In regards to cataplexy, medications are usually the most effective way to manage this symptom, but some behavioral strategies may also help:

• Get enough sleep. Many people with narcolepsy report that they are more likely to get cataplexy if they are tired, so get enough sleep at night. Some people can sense when they are on edge to develop cataplexy, and this tendency can be reduced by a short nap.



• Enlist help from friends and family. If your cataplexy is brought on by specific triggers or situations such as joking or tickling, encourage your friends and family to avoid these during critical times. Avoiding strong emotions is not a pleasant way to go through life, but if cataplexy is about to occur at an awkward time, it can help if you relax and tone down your emotions.

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