In high school, Melodie Monroe’s school football team was tied with its rival, and there were just 10 seconds left on the clock. The team managed a win, and she jumped up in excitement with the rest of the school. That exhilaration was too much for Monroe, who has narcolepsy with cataplexy. Her muscles suddenly went weak with the onset of emotion, the result of the cataplexy, and she tumbled down the bleachers.
Monroe was 15 when she was diagnosed, which is in line with the normal statistic for narcolepsy, which often strikes teenage girls. “It hit whenever it wants to,” she laments. “I could be sitting in church, in school.”
While it affects 200,000 Americans, according to the Narcolepsy Network, it’s just one of the sleep disorders that is affecting quality of life for sufferers. Others include bruxism, or grinding teeth; night terrors, which include intense fear, screaming, and can be paired with sleepwalking; restless legs syndrome, an uncontrollable urge to move legs at night; and sleep-eating disorder, which means out-of-control eating or drinking while in a state of unconsciousness.
Dr. Ahmad Nasef, a sleep specialist in Milwaukee, believes that although 15 percent of the population is diagnosed with a disorder, the numbers are actually closer to 40 percent. Rachelle Fanello, who is with the Sleep Center at the Mayo Clinic, says 80 percent of the population has some type of disorder, which is defined as a change in the way you sleep. It can affect overall health, safety, and quality of life, as well as increase risk of other health problems, according to the Mayo Clinic.
“People are embarrassed to talk about it,” Nasef explains. “They’re embarrassed to say they snore. They try to overcompensate with coffee and caffeine.” Many are also unaware of their actions while unconscious, and if they don’t have a partner who can track their movements, issues can go undiagnosed.
Although people get used to the idea of snoring, Nasef contends it’s not a normal condition; it indicates that there’s some sort of obstruction in the airway. “It may be allergies; it may be nasal passages,” he continues. “All of this could be fixed.”
Sleep deprivation is the most common sleep disorder in the United States, according to Dr. Camilo Ruiz, medical director at Choice Physicians Sleep Center in South Florida. The next most prevalent disorders would be insomnia and obstructive sleep apnea. The former makes it hard to fall or stay asleep. Although medication will help, Nasef also recommends psychotherapy to his patients to discover any psychological roots to the issue. The latter causes breathing to stop and start; the obstructive kind causes throat muscles to relax and block the airway, stopping oxygen flow to the brain.
While apnea is often onset because of weight gain, since extra fat in the neck and chin blocks those muscles from completely relaxing, Nasef explains it could also be because of anatomy, such as a lower jaw that may be pushed back. “When we’re awake we can breathe all right,” he says. “But, when we go to sleep, our muscles have to relax, especially the tongue. It slides backward. If your airway is already narrow, then it’ll block it.”
John Walsh was diagnosed with obstructive apnea in 2006. He wasn’t able to rest the full night and knew something was wrong because he was tired all day. He went through a sleep study on the suggestion of his doctor and was prescribed a mask and a continuous positive airway pressure (CPAP) machine, the most effective treatment for apnea. While he now had a solution, that itself proved to be as tough as the diagnosis.
A CPAP machine forces air into the body, and it takes a while to get used to. More troublesome to Walsh, however, was the accompanying silicone mask. It irritated his skin, and he just never felt comfortable until he developed his own masks and started selling them. “My experience was horrible,” he expands. “I just wanted to rip the mask off.”
It was a tradeoff of not getting a good night’s rest because of the apnea with not getting enough slumber because of the mask. However, once he figured out the logistics after several years of tinkering, it was a world of difference. He had gotten so used to not being rested, he didn’t remember what it was like to be refreshed. “This stuff creeps up on you, like gaining weight,” he says.
Doctors and specialists recommend asking a physician or seeking information if you snore, are overweight, have hypertension or heart problems, wake up groggy or with a headache, or are generally tired throughout the day. If someone is recommended for a sleep study, they’ll report to a facility at night and be hooked up to monitor brain activity, heart activity, eye movement, and snoring.
Most disorders have fixes, although something like narcolepsy has no cure. However, after many years of working with her doctor, Monroe has found very effective techniques to control it. Even though she was teased for all of a sudden knocking out in class in high school, she found it was helpful to be around friends who understood her situation and didn’t take advantage of her suddenly passing out. Her teachers found ways to accommodate her: She was given a room to take a nap during the day, she had a note taker in classes, and she was given more time to take tests. Even now at her full-time job, she feels comfortable enough with her co-workers to explain what she needs to remain productive.
“I still have a 30-minute nap time I’m allowed to take,” she adds. “Between 1 and 2 pm, no matter how much medication I take, that’s when narcolepsy hits me.”
Her co-workers and family also recognize what it looks like if an attack is about to hit her. Her eyes roll back, and her speech gets slurred. “Once my family became more aware, now they’re my support system,” she says.
However, it took some time to find that balance. Monroe’s mother was scared to let her get a driver’s license, so she didn’t have one until the age of 21. She now recognizes all the symptoms of when an attack may hit and pulls over so she’s not putting anyone in danger. She had to explain all the nuances and dispel myths of narcolepsy when she met her now-husband. Her children, when they were younger and couldn’t understand the reasoning, would get angry at her for getting drowsy while helping with their homework.
Now, 23 years later, she’s on a steady regimen of medication to keep her awake in the day and other pills to help her rest at night. “If I don’t take medication, it affects my mood and attitude,” she expands. “I get jittery and start lashing out.”
Although Monroe’s diagnosis is on one extreme of the spectrum, most Americans have some form of a disorder. They’re just used to the idea of working through drowsiness, but it can have a detrimental effect.
“Sleepy drivers are way more dangerous than drunk drivers,” Nasef warns. Adequate rest, in both time and quality, also promotes healthy bodily functions, immunological healing, cognition, and memory, adds Ruiz. “When you’re sleep-deprived, you don’t allow these internal processes to occur,” he expands. “It can lead to decreased longevity and poor health in the long term.”
It’s easy enough to talk about needing 8 to 9 hours of good quality slumber a night. However, Ruiz recognizes that the lack can come from necessity of working multiple jobs or caring for children. It can become the most simple thing to cut out with a busy schedule. It’s also not an easy thing to make up for. One late night can be corrected with longer naps the next day. However, “when you have chronic sleep deprivation, that leads to difficulty replacing that time downstream. It’s harder for people to recover,” Ruiz says.
For those doing shift work, it’s recommended to take a 20-minute nap prior to starting to stay more alert through the shift. Nasef also recommends a 10-20 minute nap during the day, similar to European siestas. “If you’re tired, it will increase performance,” he explains. “You will hit a deep sleep right away if you’re so tired, and it will improve the productivity of the worker.”
Sticking to good habits can also combat sleep deprivation. The same tactics that are used to retrain insomniacs can also be applied to others who don’t have those exact symptoms. Light from devices, such as televisions and cell phones, throws off the body’s circadian rhythm. Keep the bed to just sleeping. Any reading, eating, or watching TV should be kept out of the bedroom space. It also helps to have the same routine before bedtime, and there should be an effort to fall asleep and wake up at the same time every day.
Both Monroe and Walsh are content now that their disorders have been diagnosed and they’ve found the best techniques to control them. It was a relief to know what was causing their issues and be able to tackle them head-on. “I’m stable, and I like my stability,” reflects Monroe.
Nadia Malik holds a degree in journalism and is a former reporter for a Chicago-area newspaper. She has written for websites and publications and has also worked for several non-profit organizations. She is currently in a graduate program at the University of Pennsylvania, studying social work and nonprofit leadership.