Living with narcolepsy: 'It's no joke, it's a serious condition'

Matthew Horsnell started experiencing unexplained sleep episodes when he was in sixth grade.

"I’d go to bed at 8:30, but each morning I’d wake up struggling to get out of bed," Horsnell, now 43, recalls. "I’d often fall asleep on the couch waiting for my mom to take my brother and me to school, and even nod off during the 20-minute drive. During class, I’d sometimes sneak to the back to catch a quick nap."

By the time he turned 20, Horsnell started losing control of his body for short moments when he experienced intense emotions, collapsing or becoming paralyzed while fully conscious — a condition known as cataplexy.

"If I’m startled or hear a really funny joke, my knees may give out, or I might drop something. Sometimes, I even fall over," he shared. "It’s both frightening and embarrassing, because although I see people rushing to help, I can’t respond."

Horsnell has narcolepsy, a sleep disorder that makes staying awake for extended periods difficult. Individuals with this condition not only fall asleep repeatedly during the day, but also experience severely disrupted sleep at night, explained Jennifer Mundt, assistant professor of sleep medicine at Northwestern University’s Feinberg School of Medicine in Chicago.

Narcolepsy affects an estimated 1 in 2,000 people in the U.S. and around 3 million globally, according to the Narcolepsy Network, a nonprofit patient advocacy organization. However, this figure is likely an underestimation due to the challenges in receiving an accurate diagnosis, said Mundt, who treats and conducts research on narcolepsy.

In fact, it’s estimated that only 25% of those with narcolepsy are diagnosed and receive treatment, according to the Narcolepsy Network.

"It typically takes 10 years or more to get a diagnosis, which means many people with the condition remain untreated," Mundt explained. "Many individuals never see a sleep specialist, one of the few medical professionals trained to recognize the symptoms."

A significant number of narcolepsy sufferers also experience cataplexy, a condition that, combined with excessive daytime sleepiness, severely impacts a person’s ability to socialize, hold a job, drive, or maintain close relationships, particularly those that trigger strong emotions, Mundt added.

"Narcolepsy has been heavily stigmatized," she said. "In films, it’s often shown as a joke, something comical. But it’s not funny – it’s a serious condition."

"Please don’t call an ambulance!"

During his early college years, Horsnell was lifting heavy weights at a local gym when he suddenly felt his knees start to tremble. Panic set in.

"A wave of fear rushed through me, and when I tried to push for the next rep, my body failed me. The entire barbell came crashing down," he recalled.

Luckily, the machine's rack caught the bar, leaving Horsnell with only a few minor bumps and a bruised sense of pride.

"The scariest part was lying there, drenched in sweat, hearing people whisper, 'Is he OK? Should we call an ambulance?' When I finally broke free from the paralysis, my first words were, 'Please don’t call an ambulance!'

Initially, Horsnell thought the episode was caused by low blood sugar. But then, he began slurring his speech and had to lean on his elbow or a nearby wall to stay upright as he laughed.

"When you fall, your chances of catching yourself are almost zero — gravity takes over," he said. "Believe me, I’ve hit my head hard a few times and had at least two concussions to prove it."

Horsnell also experiences other typical narcolepsy symptoms, such as nightmares and hypnagogic hallucinations — vivid, sometimes unsettling visuals or sensations that occur as a person is falling asleep. While such hallucinations are common, Horsnell’s encounters are far from ordinary.

"I either feel or see whatever is happening in my dreams — like a dead woman falling onto my chest," he described. "I can feel the weight of her body, the strands of her hair brushing my neck, and see her face just inches away. It’s a terrifying experience."

Horsnell mentioned that when he is extremely fatigued, these hallucinations can occur even before he’s in bed.

"I might glance at a corner and see a figure that isn’t there, but I can clearly make out its shape. My mind is projecting a dream onto my surroundings," he explained. "I’ll also hear conversations that aren’t happening. It’s unsettling, especially if you don’t understand what’s going on."

Nightmares affect about one-third of individuals with narcolepsy, and hallucinations are also quite common, according to Mundt, who recently led a successful pilot study exploring cognitive behavioral sleep techniques to help manage nightmares in narcolepsy patients.

"It’s like your brain is constantly toggling in and out of sleep, both day and night," she said. "This disruption causes symptoms like sleep paralysis, hallucinations, and even confusion between whether you were truly asleep or just dreaming, as frequent awakenings cause so much disruption."

A link to the flu

Horsnell’s symptoms began at age 12. He consulted a pediatrician, an internist, and four psychiatrists before finally seeing a sleep specialist in 2007. At last, he received a diagnosis: type one narcolepsy with cataplexy, the most common form of the disorder. This type is typically confirmed through a spinal tap, which reveals a deficiency of the neurotransmitter orexin, also known as hypocretin. Orexin is crucial for regulating both appetite and sleep.

"We believe the immune system mistakenly attacks the part of the brain that produces orexin, making it an autoimmune condition," explained Mundt. "However, type two narcolepsy patients don’t lack orexin, and we don’t fully understand why."

Around 25% of the population carries the gene linked to narcolepsy, but only about one in 500 people will actually develop the disorder, according to the Narcolepsy Network.

Recent research suggests that bacterial and viral infections, like strep throat or certain strains of the flu, might trigger the onset of narcolepsy.

"A person might contract the flu, which sparks an autoimmune response that ultimately damages the part of the brain that produces orexin," Mundt said. "Months later, the lack of orexin leads to the development of narcolepsy."

While there’s no cure for narcolepsy, certain medications can alleviate some of its most debilitating symptoms. Horsnell, who believes his narcolepsy was triggered by a severe case of strep throat during childhood, has experimented with a variety of treatments — from stimulants to help him stay awake during the day, to potent sleep aids designed to prevent frequent awakenings at night.

Sodium oxybate, also sold illegally as GHB, is a controlled substance approved by the US Food and Drug Administration (FDA) to address the muscle weakness that often precedes a cataplectic episode. Histamines can also help increase orexin levels in the brain, while certain antidepressants may provide relief from cataplexy.

"When you experience a strong emotional reaction, taking medications that dampen or suppress that emotion might help reduce the intensity of the response," Horsnell explained.

Today, Horsnell enjoys quality time with his wife and three kids, and dedicates his efforts to volunteering as a 'sleep ambassador' for several narcolepsy-focused organizations such as Project Sleep, the Society for Behavioral Sleep Medicine, the Sleep Research Society, and the American Academy of Cardiovascular Sleep Medicine.

As a trained speaker for Project Sleep’s Rising Voices of Narcolepsy leadership program, Horsnell had the honor of visiting the White House in 2023 to advocate for greater awareness of narcolepsy and sleep disorders. He also works closely with the pharmaceutical industry and scientists like Mundt to guide research on the condition — the two recently co-presented a paper at a conference.

"My journey has been filled with both pride and significant challenges," Horsnell reflected. "If my experiences can lead to a faster diagnosis or help others better understand life with narcolepsy, then those struggles will have been meaningful and worth it."