Narcolepsy Patients: What Is Life Like for Someone with This Strange Condition?

Dubai, United Arab Emirates - Matthew Horsnell began sleeping without reason when he was in the sixth grade. Horsnell, now 43 years old, said, "I would go to bed at 8:30 PM, yet I would wake up every morning, struggling to get out of bed," adding, "I would sleep on the couch while waiting for my mother to take me and my brother to school, and I would doze off again during the 20-minute ride, and then all day long.

Sometimes I would move to the back of the class to nap a little." By the age of twenty, Horsnell began losing control of his body for brief periods when feeling strong emotions, collapsing or falling to the ground, conscious but paralyzed, a condition known as cataplexy.

Horsnell said, "If I feel scared or if someone tells a really funny joke, my knees might tremble, or I might drop something, I might even fall. The scary and embarrassing part is that I can see people coming to help me, but I am unable to respond."

Horsnell suffers from narcolepsy, a sleep disorder that causes difficulty in staying awake for long periods. Not only does the affected person frequently fall asleep during the day, but they also suffer from severely interrupted sleep at night, said Jennifer Mondt, an assistant professor of sleep medicine, psychiatry, and behavioral sciences at Northwestern University's Feinberg School of Medicine in Chicago.

According to the Narcolepsy Network, a nonprofit group supporting patients, narcolepsy affects 1 in every 2,000 people in the United States and about 3 million people worldwide. However, this number is likely lower than the actual figure due to the difficulty in obtaining an appropriate diagnosis, according to Mondt, who treats narcolepsy patients and conducts research on the condition.

In fact, estimates suggest that only 25% of people with narcolepsy are diagnosed and treated, according to the Narcolepsy Network. Mondt reported that a significant percentage of people with narcolepsy also suffer from cataplexy, which disrupts a person's ability to socialize, perform work, drive, or even enjoy close relationships that evoke strong emotions, explaining: "There has been a significant stigma regarding narcolepsy.

In movies, it is often portrayed as something very funny, as if it is a joke. It is not a joke; it is a very serious illness." "Do not call an ambulance" During his early college years, Horsnell was doing squats with heavy weights at the local gym when he felt his knees tremble.

At that moment, he was overwhelmed by a feeling of fear, and when he tried to complete the exercise, his body gave out, and the barbell he was holding fell. Fortunately, Horsnell only suffered some bruises.

His first words when he managed to overcome the paralysis that struck him for minutes were: "Please, do not call an ambulance." Initially, Horsnell blamed it on low blood sugar.

But then he began to stutter while speaking and had to lean against the wall to prevent himself from falling. Horsnell suffers from other common symptoms of narcolepsy, including nightmares, visual and tactile hallucinations that occur during sleep.

After his symptoms began to appear when he was twelve years old, Horsnell visited a pediatrician, an internist, and four psychiatrists before seeing a sleep specialist in 2007. Finally, he was diagnosed with type 1 narcolepsy with cataplexy, the most common form of the disease.

This type of narcolepsy is often confirmed through a spinal tap that shows a deficiency of the neurotransmitter orexin. Orexin, also known as hypocretin, plays a key role in regulating appetite and sleep.

Mondt explained: "What we believe happens is that the body's immune system attacks the part that produces orexin in the brain, so it is classified as an autoimmune response." The gene associated with narcolepsy is present in about 25% of the population, but only 1 in 500 people actually develop the sleep disorder, according to the Narcolepsy Network.

Scientists believe that the trigger for narcolepsy may be a bacterial or viral infection, such as strep throat or a form of influenza. There is no cure for narcolepsy, but medications can treat some of the worst symptoms. Horsnell, who believes that his narcolepsy is a result of a severe case of strep throat he had as a child, has tried many treatments.

He uses stimulants to stay awake during the day, along with strong sleep aids to avoid waking up constantly at night. Today, Horsnell spends his time with his wife and three children, and he also volunteers as a "sleep ambassador" for several different narcolepsy associations and patient advocacy organizations.