The Symptoms and Early Signs of Narcolepsy — and How to Spot Them

After a night of not enough sleep, most people will likely feel drowsy the next day. And if your surroundings are dark, quiet, and relaxing enough — or if your previous night of sleep was short enough — you may even nod off inadvertently.

Here are the symptoms that people with narcolepsy are most likely to experience — and how to tell the difference between the symptoms of narcolepsy and those of other sleep disorders.

In some cases, these sudden sleep episodes can happen right in the middle of engaging in an activity such as eating, talking, being in a meeting, or attending class.

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• People are used to feeling tired on a routine basis. “Daytime sleepiness could be a symptom of many things, even just not getting enough sleep,” says Shelley Hershner, MD, a clinical associate professor of neurology and the director of the Collegiate Sleep Clinic at the University of Michigan in Ann Arbor, who has worked on narcolepsy quality metrics for the American Academy of Sleep Medicine (AASM). Thus, the common symptoms many people with narcolepsy have that are related to inadequate sleep — mental fogginess, memory problems, trouble focusing or paying attention, or lack of energy — can look like the typical signs of the sleep deprivation that can come with having a packed schedule or being stressed.

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• Other symptoms usually show up later. Particularly in the early stages of the illness, more unique narcolepsy symptoms (such as cataplexy, which means experiencing sudden episodes of muscle weakness) often don’t appear until later, anywhere from weeks to years after someone gets the disorder. Or if they are present, they may be very subtle (a barely noticeable drooping of the eyelids, for example).
• People aren’t as aware of narcolepsy. Even though narcolepsy isn’t extremely rare — it affects about 1 in 2,000 people — it’s a condition that often flies under the radar and is frequently overshadowed by other more well-known sleep disorders, like insomnia and sleep apnea.

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• Extreme sleepiness during the day is often a symptom of other illnesses. Severe daytime drowsiness is a common symptom of sleep disorders such as obstructive sleep apnea and insomnia, and it could also be a sign of diabetes or an underactive thyroid.

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   Obesity and depression can contribute to daytime drowsiness, too.

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Cataplexy

Cataplexy is the sudden, temporary, and uncontrollable loss of muscle tone and control. It happens when an individual experiences a strong emotion, such as excitement, happiness, stress, surprise, anger, or fear. Cataplexy attacks may be mild, such as a slight drooping of the eyelids, or can involve losing muscle control in the hands, knees, or in some cases, the entire body.

Depending on what part of your body is affected, cataplexy may cause your head to nod, your hand to drop something, your speech to become slurred, or your facial muscles to go slack — or you may fall down or collapse as a result.

A cataplexy attack may last for a few seconds or a few minutes, and it may go away on its own (meaning the person regains control of their muscles). During episodes, people are typically awake and aware of what’s happening, even if they cannot control their affected muscles. (That’s why cataplexy is sometimes mistaken for a symptom of a seizure disorder.) Some people may experience only one or two cataplexy attacks in their entire lives, while others may have as many as several episodes a day.

Sleep Paralysis

When we enter the REM phase of sleep, we dream, and our bodies naturally paralyze the muscles so that we don’t act out our dreams and potentially injure ourselves while we sleep. But in people with narcolepsy, the paralysis happens at the wrong time, when they’re awake (which is cataplexy) or while they’re falling asleep or just waking up. This latter episode is termed “sleep paralysis.” The symptom can be brief, usually lasting only a few seconds or minutes, but it can make you feel helpless and be extremely frightening. “This sensation of being awake but not being able to move can be broken by someone touching you,” says Dr. Olson.

Hallucinations 

“They may collapse completely, sleep all the time, or gain 30 pounds in three months,” says Dr. Mignot. In older children, it can be really detrimental to self-esteem and school work.

It’s important to catch the condition in children and adults as early as possible. Kids who have narcolepsy tend to have trouble doing well in school because they often experience problems with attention and memory, and they may find themselves falling asleep at school or during extracurricular activities.

Adults who experience frequent sleep episodes during the day and do not realize that they have narcolepsy may believe that they are lazy or have poor self-esteem, and they may encounter social problems as well as problems at work or school. Some people may believe that their symptoms stem from a psychological disorder and may be afraid to discuss what they’re experiencing with a doctor, says Olson. “People think, ‘Am I getting schizophrenia or am I delusional?’” says Olson. And some people may self-medicate with alcohol or medication to treat their symptoms, which can worsen the situation.

If you suspect that you or someone you love may have any of these symptoms, it’s a good idea to talk to your doctor about being evaluated for narcolepsy as soon as possible. Early diagnosis is a crucial first step to understanding and managing the disorder.