4 Things That Might Suprise You About Narcolepsy

Narcolepsy is often misunderstood — at times, the seriousness of the disease is even downplayed in our culture.

But make no mistake, narcolepsy is a problematic lifelong disorder that affects approximately 200,000 Americans. In my practice at UW Medicine, I’ve diagnosed numerous patients with narcolepsy. And doctors estimate that thousands of people go undiagnosed or misdiagnosed every year.

Here are some things you might not know about narcolepsy.

What is narcolepsy?  

Narcolepsy is a sleep disorder that disrupts your sleep-wake cycle and typically appears during adolescence. Patients often come to me because sleep disruptions leave them excessively tired. If you have narcolepsy, you may even fall asleep suddenly in the middle of activities.

But that’s not all it is. Here are some other aspects of the condition that are less well-known:

Narcolepsy isn’t just falling asleep randomly during the day

It’s a common misconception that narcolepsy only causes you to fall asleep abruptly and randomly throughout the day. These episodes — called sleep attacks — can occur, but they’re largely associated with severe narcolepsy. More often, narcolepsy breaks your sleep into short segments. Rather than getting seven to eight hours of continuous sleep every night, you sleep for shorter spurts throughout the day. You might find it equally difficult to fall asleep at night and stay awake during the day. The result is chronic sleepiness. 

Laughter can trigger muscle weakness for people with narcolepsy

Daytime sleepiness and extreme fatigue are two of the best-known signs of narcolepsy. But while other sleep disorders, like sleep apnea, can produce those same problems, narcolepsy also causes physical symptoms like head-bobbing, knee-buckling and slurring of words. The technical term for this muscle weakness is cataplexy and it can be triggered by intense emotions like laughter, excitement or anger.

Narcolepsy can cause other issues like sleep paralysis or hallucinations

Alongside creating problems with falling and staying asleep, narcolepsy can also create strange sensations during your sleep. In some cases, you may experience sleep paralysis and be unable to move when you wake up in the middle of the night or in the morning.

Or you may experience hypnagogic or hypnopompic hallucinations in which you might see or hear things that aren’t there as you fall asleep or wake up. Patients may also see vivid, bright shapes; hear noises; or feel a tingling or prickly sensation.

Narcolepsy affects your heart health

Existing research shows that if you have this sleep disorder, you’re at higher risk of developing cardiovascular disease.

Researchers are still learning about the link between narcolepsy and heart problems, but one thing is clear: Narcolepsy prevents your blood pressure from naturally dipping down at night. When this happens, you’re at greater risk of heart attack, heart failure and stroke.

There is also evidence that people with narcolepsy also have higher rates of depression, diabetes, obesity and other sleep conditions. Each of these health problems can also boost your risk of developing cardiovascular disease. 

Can you treat narcolepsy?

There’s no cure for narcolepsy. But proper treatment can help you manage the condition and improve your sleep and quality of life. If you’re concerned you may have this disorder, talk with your primary care doctor first. They can refer you to a sleep specialist who can evaluate your sleep patterns. 

To diagnose you, specialists will conduct an overnight sleep study. The next day, we ask you to take five 20-minute naps separated by two hours each. During those naps, we will assess how quickly you fall asleep and whether you enter REM (rapid eye movement) sleep — the dream stage — within 15 minutes. Reaching REM sleep that quickly at least twice points to narcolepsy.  

Based on these sleep study results and your symptoms, we may recommend medication, including:

• Serotonin and norepinephrine reuptake inhibitors (SNRIs) or selective serotonin reuptake inhibitors (SSRIs): These medications can relieve cataplexy, hallucinations and sleep paralysis.
• Sodium oxybate and oxybate salts: These prescriptions treat cataplexy, control daytime sleepiness and help improve your sleep at night.
• Stimulants: These medications excite your brain and central nervous system to help you stay awake during the day.  
• Wake-promoting agents: These therapies prevent sleep from happening unintentionally.

Adopting healthy lifestyle behaviors can also help you manage your narcolepsy symptoms. You may sleep better and feel less tired if you:

• Avoid alcohol: Alcohol can cause unwanted sleepiness initially, and then when it wears off it can cause sleep disturbance.  
• Create a sleep schedule: Get up in the morning and go to sleep at the same time every night.  
• Exercise regularly: Fitting in aerobic activity is important, but avoid exercising at night. Try to get your workout in at least five hours before you go to bed.
• Take naps: Making a point to have several intentional 15-to-20-minute naps (rather than trying to power through your day) can increase your energy level.  

We’ve learned a lot about narcolepsy over the last decade and pharmaceutical companies are working on several promising targeted therapies. With a timely diagnosis and proper treatment, people with narcolepsy can get on the path to more regular, restful sleep. 

Nathaniel Watson, MD, MSc, is a professor and vice chair of faculty affairs in the Department of Neurology at UW Medicine. He is also co-director of the Sleep Center and director of the Harborview Medical Center Sleep Clinic at the University of Washington. As a board-certified physician in neurology and sleep medicine, he treats clinical sleep disorders of all types. Dr. Watson uses the most sophisticated and emerging technologies to measure and evaluate patients’ sleep patterns and problems. He works closely with his patients to resolve their sleep disorders so they have more energy to pursue their own interests. Dr. Watson has an active lifestyle. Some of his favorite activities include backpacking, boating, fishing and snowboarding.