There is a misconception about patients with narcolepsy. Too many patients, and providers alike, believe that a patient with narcolepsy is going to fall asleep when you have a conversation with them.
Many people remember River Phoenix in “My Own Private Idaho” a movie of the early 90s that depicted a young street hustler who had narcolepsy with cataplexy. The character had episodes where he suddenly fell in the street, overtaken by his illness. But not all patients with narcolepsy present this way.
The sleepiness and fatigue that characterizes narcolepsy can vary in degree. Some patients feel only mild fatigue, whereas other patients have difficulty staying awake, if not stimulated. To diagnose narcolepsy, a patient must have a multiple sleep latency test (MSLT).
This test is done during the course of a day and involves five naps that last 20 minutes each. In between these naps, the patient is kept awake. Narcolepsy is diagnosed if the patient has a mean sleep latency of less than or equal to eight minutes and has two or more sleep-onset REM periods.
There patient must have no other sleep disorders, medical, mental or neurological disorders. Substance use and some medications can mimic symptoms of narcolepsy, so these also should be ruled out also.
Many providers do not realize that some patients with narcolepsy have difficulty sleeping at night. There may be periods of fragmented sleep, disrupted sleep and in some cases insomnia. This is because these patients are often taking multiple micro naps throughout the day when they are tired or bored. These small naps add up during the day and then disrupt nighttime sleep.
We have seen patients who have gone without a narcolepsy diagnosis because healthcare professionals discounted their symptoms due to patients reporting difficulty sleeping at night.
Consider narcolepsy in patients who have increased fatigue and sleepiness during the day. Also, patients with narcolepsy have increased REM sleep. Ask the patient if they have vivid dreams. Do they dream during naps?
A “normal” sleeper does not typically dream during a nap as most of us go into REM sleep every 90 minutes. Most naps last less than 90 minutes, so dreaming happens infrequently. Those with narcolepsy usually start dreaming within 20 minutes or less.
Cataplexy is not seen in all patients with narcolepsy, which is another misconception. Many patients with narcolepsy experience some symptoms of cataplexy, but the symptoms can vary similar to those with narcolepsy.
Some patients with cataplexy may have the extreme experience of falling, but generally many more just have periods of weakness that are usually provoked by strong emotions such as laughter, surprise or anger.
Remember patients with narcolepsy may complain of difficulty falling asleep or maintaining sleep. If the patient is having difficulty staying awake, is extremely fatigued, has daytime sleepiness and takes unintentional naps, consider narcolepsy in the differential and refer them to a sleep center for evaluation.
Sharon M. O’Brien, MPAS, PA-C, works at Presbyterian Sleep Health in Charlotte, N.C. Her main interest is helping patients understand the importance of sleep hygiene and the impact of sleep on health.