4 Narcolepsy Symptoms That Can Impact Your Life — and How to Manage Them

The most important thing you can do is follow your treatment plan. But for some symptoms, there are additional steps you can take to control the symptom and reduce its effect on your life.

1. Excessive Daytime Sleepiness

Narcolepsy causes nighttime sleep to be choppy and fragmented, which causes you to feel sleepy during the day, says Andrew Varga, MD, an associate professor of medicine, pulmonary, critical care, and sleep medicine at the Icahn School of Medicine at Mount Sinai in New York City.

How It Can Affect You Because narcolepsy interferes with your sleep quality — not quantity — staying in bed for a few extra hours of shut-eye won’t fix the problem. “No matter how long you sleep, sleep quality is just poor, and sleeping longer won’t cure excessive daytime sleepiness,” Dr. Varga says.

Poor nighttime sleep can cause you to become so overwhelmed by the need to sleep that you may fall asleep during the day, whether you’re in class, in a meeting, or at your desk. This can have major ramifications in your ability to be successful in school or at work, as well as your ability to safely perform tasks such as driving a car.

What You Can Do Certain medications could help bring your symptoms under control; some can help promote wakefulness during the day, and others can help you sleep at night, says Varga. Even if you’re taking these medications, though, you may still experience a chronic undercurrent of drowsiness.

That’s where lifestyle interventions, such as strategic napping, can be helpful. You may feel refreshed after taking one or more 20-minute naps during the day. But napping isn’t for everyone, notes Varga, as it can leave some people with a fuzzy-headed feeling upon waking. Moreover, you will likely need to speak to your school or employer to arrange accommodations to nap during the day. “On occasion, I’ve had to write a letter explaining that I have prescribed naps, and [the patient is] not just trying to get out of work,” says Varga.

You’ll also have to decide whether you’re able to drive a car — a decision that can vary from person to person. “Some patients decide at the outset that they won’t drive because they don’t trust themselves, while others have driven their entire life without an accident,” says Michael Thorpy, MD, director of the Sleep-Wake Disorders Center at Montefiore Medical Center in New York City.

Driving can be extremely risky for someone with narcolepsy who feels tired all the time. But if your symptoms are under control and you get the green light from your doctor, you should be able to get behind the wheel. “Once patients understand their diagnosis, most can adapt and drive safely,” says Dr. Thorpy. “They may drive but put limits on distance or the amount of driving they do alone.” Bottom line: You may be able to drive safely — if you work with your doctor to get the right treatment and set appropriate limits for yourself.

2. Interrupted Sleep Cycles

What You Can Do Your doctor will assure you that these apparitions are not real, but even if you understand that deep down, they can still feel very real, so it may be difficult to remind yourself that they’re imaginary when sleep is taking hold of you. “For many patients, nightmares and hallucinations are not adequately controlled,” says Thorpy. “In the past, the medications we used all focused on daytime symptoms while overlooking nighttime ones.”

Some narcolepsy medications recommended by doctors may help lessen abnormal REM sleep, stabilize nighttime sleep, and improve excessive daytime sleepiness, according to Thorpy.

3. Sleep Paralysis

When you enter REM sleep, nature protects you from acting out your dreams by putting your body into sleep paralysis, which is a temporary loss of muscle tone. In normal sleep, this occurs during the night. If you have narcolepsy, though, you transition into REM sleep quickly, and some people experience temporary sleep paralysis at the onset of sleep or when waking up.

How It Can Affect You With sleep paralysis, you’ll experience the sensation of being conscious but not be able to move or speak. This can be frightening, especially since sleep paralysis and hallucinations frequently occur together, says Clete Kushida, MD, PhD, medical director of Stanford Sleep Medicine in Redwood City, California.

What You Can Do To reduce your risk of sleep paralysis, Dr. Kushida recommends maintaining good sleep habits, which includes the following:

• Stick to a set sleep and wake time.
• Shut down devices with screens (tablet, computer, phone, TV) at least 30 minutes before bedtime.
• Keep your bedroom quiet, cool, and dark.
• Avoid alcohol and caffeine late in the evening (which can interfere with sleep).
• Avoid large, heavy meals, especially close to bedtime.
• Manage stress.

4. Loss of Muscle Tone

How It Can Affect You The severity of your cataplexy determines how much it affects you. For more minor cataplexy, you may experience anything from a small inconvenience to nothing at all. On the other hand, you may be unable to engage in certain activities, for fear of falling or collapsing. People with severe cataplexy may also avoid situations that can trigger a strong emotional response, such as seeing a funny or sad movie or attending a party. “It’s possible that you can try to suppress emotions, but it’s not ideal to go through life with a flat affect,” says Thorpy.

What You Can Do If your cataplexy is controlled by medications, then you can express your full emotions without fear. There are first-line medications to treat cataplexy, though they’re not right for everyone. Work with your doctor to find the right regimen to help lessen your symptoms while delivering side effects you can live with.