Man struggling with excessive sleepiness shares how he copes with this chronic condition

Matthew Horsnell, a person with narcolepsy, recently shared his story on CNN to raise awareness about the challenges of living with the condition.

He volunteers with several narcolepsy organizations, including Project Sleep and the Sleep Research Society, and serves as a trained speaker for Project Sleep’s leadership program.

Additionally, he collaborates with the pharmaceutical industry and researchers to guide narcolepsy research.

Despite his difficulties, Horsnell is proud of his journey and hopes his experience will help others get a quicker diagnosis and better understand the condition.

For him, making a positive impact on others makes his struggles feel worthwhile.

Horsnell began struggling with unexplained sleepiness in sixth grade, despite getting a full night’s sleep. He would often fall asleep on the couch or even during the 20-minute drive to school.

By age 20, he started experiencing a narcolepsy symptom called cataplexy, a condition where strong emotions caused him to lose control of his body, collapsing or slumping to the ground while remaining conscious but unable to move.

“If I’m startled or someone tells a really funny joke, my knees may buckle, or I may drop something. I can even fall over,” Horsnell said.

He finds it particularly frightening and embarrassing because, although he can see people rushing to help, he is unable to respond.

Narcolepsy, a sleep disorder that makes it hard to stay awake for extended periods, often causes sudden daytime sleepiness and disrupted nighttime sleep, according to Jennifer Mundt, a sleep medicine expert at Northwestern University.

While the Narcolepsy Network estimates that about one in 2,000 people in the U.S. and 3 million worldwide have the disorder, Mundt noted the actual numbers may be higher due to difficulties in diagnosis.

Only about 25% of people with narcolepsy are diagnosed and treated, according to the Narcolepsy Network.

“On average, it takes 10 or more years to get diagnosed, so we know there’s a lot of people out there who may have it and are going untreated,” Mundt said, adding that most people with the disorder don’t see a sleep specialist, one of the few experts trained to identify narcolepsy symptoms.

Many patients also experience cataplexy, where intense emotions trigger sudden muscle weakness.

Combined with daytime sleepiness, this can make it hard to work, drive, or maintain relationships.

Mundt pointed out that, despite its frequent portrayal as a joke in movies, being a person with narcolepsy is not easy as it is a serious condition.

As a person with narcolepsy, Horsnell experiences more symptoms, including nightmares and intense hallucinations as he falls asleep.

While hypnagogic hallucinations—like flashes of light or shapes—are common, experts say Horsnell’s episodes are particularly vivid.

He has described feeling as though a deceased woman is falling on his chest, with sensations of weight, hair brushing his neck, and her face close to his.

When he’s very tired, these episodes sometimes start before he even reaches bed, adding to the distress.

“I may look into a corner and see a figure that’s not really there, but I see the very clear outline of the shape, and my body is projecting this dream onto the reality,” he said, adding that he sometimes hears conversations that aren’t happening, which can feel unsettling if he’s not expecting it.

Mundt notes that about one-third of people with narcolepsy have nightmares, and hallucinations are also common.

Mundt, who led a study on cognitive behavioral techniques to manage nightmares, explained that narcolepsy causes the brain to “flip-flop” between sleep and wakefulness.

This disruption can lead to symptoms like sleep paralysis, hallucinations, and confusion about whether someone is asleep or dreaming.

Horsnell’s symptoms began at age 12, leading him to see several doctors before being diagnosed with type one narcolepsy with cataplexy in 2007.

This common form of the disorder is confirmed through a spinal tap, which reveals a lack of orexin, a neurotransmitter that helps regulate sleep and appetite.

Mundt explained that narcolepsy is thought to be an autoimmune disorder where the immune system attacks the brain’s orexin-producing cells.

However, in type two narcolepsy, orexin levels are normal, a phenomenon that researchers are still working to understand.

Narcolepsy is linked to a gene found in about 25% of the population, but only one in 500 people will develop the disorder.

Studies suggest that infections, like strep throat or the flu, may trigger narcolepsy by causing an autoimmune response that damages the brain’s ability to produce orexin, a neurotransmitter essential for sleep regulation.

While there is no cure for narcolepsy, medications can help manage the symptoms. Horsnell, whose narcolepsy is believed to have been triggered by strep throat, uses stimulants to stay awake during the day and strong sleep aids at night.

Sodium oxybate, a controlled substance sometimes sold illegally as GHB, is approved by the U.S. Food and Drug Administration to treat the muscle weakness that often happens before a cataplexy episode.

Additionally, histamines can help raise orexin levels in the brain, while certain antidepressants may also lessen the severity of cataplexy symptoms.

Horsnell also noted that medications to control emotional responses may reduce the severity of these episodes.

Here’s Matthew Horsnell sharing his story as a person with narcolepsy: