Narcolepsy: What Doctors Wish You Knew About This Sleep Disorder
We asked sleep specialists about the most common symptoms of the sleep disorder narcolepsy, and how it's treated.
What you need to know about narcolepsy
At some point, most people have felt extremely tired or experienced a lack of energy. However, if you find yourself unable to stay awake and alert during the day or experience hallucinations, sleep paralysis, or a sudden loss of muscle tone during extreme emotions like laughter or anger, you may have narcolepsy. According to the National Organization for Rare Disorders, the sleep disorder affects approximately one in 2,000 people, with the disorder going undiagnosed or misdiagnosed in more people. So, how do you know if you have a higher risk for the sleep disorder, or if you already have it?
Sleep specialists reveal the most common narcolepsy symptoms and treatments you should know about.
There are two types
Some people with narcolepsy experience powerful sleepiness throughout the day and they can’t go long without napping. Others have narcolepsy with cataplexy—in addition to daytime tiredness, they get paralysis: It’s the same thing everyone experiences to avoid acting out your dreams and injuring yourself. The difference is that it’s happening in the middle of the day.
Patients will feel their jaw go slack and feel weak, explains Todd J. Swick, MD, a neurologist and sleep disorder specialist in Houston. “Cataplexy is one of the most fascinating symptoms of the illness because it is so variable. It can be as subtle as drooping of the eyelids, slurring of speech, or bobbing of the head or neck, [or it can be] someone completely collapsing to the ground. I have seen cataplexy in golfers who got excited when they made a hole-in-one, and in a high school student who just got accepted into the college of her choice.” Watch out for these sneaky signs you need to see a sleep doctor.
Half of the sufferers don’t even know they have it
Most people assume they’re simply experiencing exhaustion from a long day, not a sleep disorder, according to Michael J. Thorpy, MD, director of the Sleep-Wake Disorders Center at Montefiore Medical Center in Bronx, New York. “Approximately 50 percent of patients are undiagnosed, and there are many people who are tired and fatigued during the daytime who have it and do not know it. Typically, it occurs in children in the first or second decade of life. However, most patients don’t get a diagnosis until they’re in their twenties or thirties,” he says. “Patients usually decide to see a doctor because their condition worsens. Some think their sleepiness is due to not getting enough sleep at night (for example, in college), and it’s only when they enter the workplace do they realize that sleepiness is occurring despite getting enough sleep.”
Experts are still researching the cause
The physical cause of the condition is complex, but doctors are learning more. Katherine Sharkey, MD, PhD, associate professor of medicine and psychiatry & human behavior at the Alpert Medical School of Brown University and co-author of the Women & Sleep Guide, explains, “We know that it affects cells in the brain’s hypothalamus that make a hormone called orexin, which regulates sleep. These cells are destroyed in this disorder, causing the disrupted sleep regulation. There is exciting research going on all the time to help us better understand the cause.” Here are 9 awesome things your brain does when you sleep.
Emotion can trigger symptoms
A minor annoyance can quickly turn into an inescapable episode of slurred speech, buckling knees, and potential collapse for patients with narcolepsy with cataplexy. Something as simple as laughing at a joke or feeling annoyed in traffic can trigger an attack. “Cataplexy is caused by emotion, and any emotion can cause it. Typically, though, it’s either happy emotions, such as laughter, surprise, happiness; or negative emotions, such as anger,” says Dr. Thorpy.
Symptoms rarely happen at the same time
While symptoms of the condition include extreme daytime drowsiness after ample sleep, vivid hallucinations, and sleep paralysis, they rarely occur at the same time, according to Dr. Swick. “It is a lifelong sleep disorder characterized by excessive daytime sleepiness, cataplexy, hypnagogic hallucinations (mental images with life-like characteristics occurring during the transition from wakefulness to sleep), sleep paralysis, and disrupted nocturnal sleep. All five symptoms are referred to as the “pentad” of narcolepsy. Interestingly, only about 20 percent of patients with narcolepsy symptoms experience all five of the pentad at any one time,” he explains. Check out the real reason you talk in your sleep.
Getting a proper diagnosis is paramount
Feeling sleep-deprived on a regular basis isn’t enough to indicate narcolepsy. Only tests performed by sleep specialists will reveal any issues. The diagnostic tests to confirm narcolepsy include a physical exam and sleep studies, which include a polysomnogram and a multiple sleep latency test. Dr. Sharkey explains, “Symptoms of other sleep disorders can overlap in patients with this condition and can sometimes be good clues for a diagnosis. For example, an estimated 30 percent of patients sleep-walk or do other unusual behaviors at night,” she says.
“Patients with the disorder can still have insomnia or sleep apnea. Often, people with this disorder have trouble with focus, memory, and concentration. This can lead to a stimulant prescription for ADHD, which may turn out to be the right treatment in the long run, but makes it harder to test for narcolepsy. So, I would tell anyone who has chronic excessive sleepiness to get a sleep evaluation before starting medications for these other conditions.”
The REM sleep cycle is key in diagnosis
Drifting off to sleep occurs in stages, with the rapid eye movement (REM) stage occurring last, for most people. For those with this sleep disorder, the regulation of the REM stage is altered, causing many troubling symptoms, says Joseph Krainin, MD, FAASM, founder of Singular Sleep, an online sleep clinic. “With cataplexy, the body immediately goes into a REM sleep-like state when triggered,” he says. “In these patients, the features of REM sleep intrude or ‘leak’ into wakefulness,” Dr. Sharkey adds. Don’t miss the 12 sleep disorders everyone should definitely know about.
Treatments include stimulants
Doctors may prescribe antidepressants that can help address daytime sleepiness; they may also suggest stimulants that help patients stay alert and avoid brain fog. “Current treatments are amphetamine- and non-amphetamine-based stimulants to support daytime wakefulness; certain antidepressants that suppress REM sleep; and sodium oxybate, which may promote better nighttime sleep,” Dr. Sharkey says. “Treatment also involves helping the patient figure out how to maximize their wake time and productivity, when to nap or rest, and how to make their lives work well despite having the disorder.”
Memory loss surrounding activities is common
Patients with the disorder often experience a sort of amnesia during activities like driving or writing, says Dr. Swick. “Up to 80 percent of patients also exhibit spells of automatic behavior. These are amnesic episodes lasting seconds to an hour or more during which patients drift in and out of sleep (a state known as a microsleep) while engaging in purposeful or semi-purposeful behavior (e.g., writing off the edge of a page or driving to unplanned destinations). A common complaint is persistent ‘brain fog,’ which permeates their daytime awareness and interferes with their concentration.” Learn some more medical reasons you feel tired all the time.
Movies show the most severe cases
“It’s important for people to understand that the real-world disorder is different from the movie or TV version,” says Dr. Sharkey. “I think my patients would say that it’s not as comical as it is often portrayed in the media. Most of my patients function well despite narcolepsy and they aren’t constantly falling asleep in their soup or falling down. In fact, many patients can feel a sleep attack or cataplexy attack coming on and get themselves ready.” This is what happens to your body when you get too much sleep.
It’s not as simple as “snapping out of it”
If you’ve never experienced the level of exhaustion that someone with a sleep disorder experiences, you’re most likely clueless about how powerless they are, explains Dr. Sharkey. “People with this disorder can’t just ‘snap out of it.’ Since everyone knows what it is like to be sleepy, people who don’t have the condition think they understand what it’s like. But people with the disorder feel the sleepiest than most of us ever feel, most of the time.”
Misdiagnosis is common
According to Dr. Swick, patients will often struggle to find a diagnosis. “Because excessive daytime sleepiness is so common in our sleep-deprived world, people with narcolepsy are often misdiagnosed with conditions such as depression, attention deficit disorder, drug or alcohol abuse, seizures—cataplexy to the untrained eye can look like a seizure—or even schizophrenia.” Next, check out the 13 sleep secrets sleep doctors wish you knew.
- National Organization for Rare Disorders: “Narcolepsy”
- National Sleep Foundation: “Narcolepsy”
- Todd J. Swick, MD, a neurologist and sleep disorder specialist in Houston
- Michael J. Thorpy, MD, director of the Sleep-Wake Disorders Center at Montefiore Medical Center
- Katherine Sharkey, MD, PhD, associate professor of medicine and psychiatry & human behavior at the Alpert Medical School of Brown University and co-author of the Women & Sleep Guide, Rhode Island
- Joseph Krainin, MD, FAASM, founder of Singular Sleep