When you have narcolepsy, it can be hard to stay awake at work. The rare sleep disorder, characterized by excessive daytime sleepiness, can cause people to nod off unexpectedly at their desks, in meetings, or even on a factory assembly line. Some people may also experience cataplexy, a sudden loss of muscle control that, in extreme cases, can cause the body to become paralyzed, collapse, and fall.
Members of MyNarcolepsyTeam share the challenges and frustrations of managing this often-misunderstood condition at work. “It's embarrassing to meet a potential new client and fall asleep while they’re talking to me about the job,” explained one member. “I’ve been having a hard time at work lately; my supervisor’s patience seems strained,” shared another. One member, who lost four jobs due to the disease, wrote, “Narcolepsy ruined my life and career.”
An estimated 135,000 to 200,000 Americans have narcolepsy, according to the National Institute of Neurological Disorders and Stroke. Symptoms typically begin between the ages of 7 and 25, and affect men and women equally. Research has shown that people with narcolepsy typically fare poorer at work. They have lower rates of employment, lower incomes, and lower work-related productivity. Narcolepsy also increases the risk of work-related and vehicular accidents.
The good news: Narcoleptic symptoms at work can generally be controlled with medication and lifestyle changes. It may take time, however, to find the right combination of treatments. Talking to your employer before problems arise may allow you to identify accommodations — such as rest breaks and safety precautions — that can help you be your best at work.
In people with narcolepsy, the brain doesn’t adequately regulate sleep and wake cycles, leading to abnormal sleep patterns and daytime sleepiness. A range of narcolepsy symptoms can prevent you from performing your job as required.
The most common narcolepsy symptom, EDS involves a strong and uncontrollable urge to nap, regardless of how much sleep has been logged the night before. Excessive sleepiness makes concentration, focus, and daily activities difficult, if not impossible. “I can’t sit down for more than an hour [without falling asleep]. It’s affecting my career,” explained one member of MyNarcolepsyTeam. Another member reports getting “written up” by her supervisor for regularly snoozing at meetings.
EDS can also cause “sleep attacks” — when people involuntarily fall asleep without warning. One member who struggles to fight the sleep urge at work explained, “I feel like that cartoon character who uses toothpicks to hold his eyelids open and stay awake.” The unpredictability of dozing off can endanger a person living with narcolepsy, as well as those around them — especially if they’re operating a vehicle or heavy machinery. “The noisy machine environment at work seems to trigger my sleep attacks,” explained a member.
Cataplexy is unique to type 1 narcolepsy, the most common form of narcolepsy. A sudden period of muscle weakness triggered by stress or strong emotions, cataplexy typically occurs in people with low levels of a sleep-regulating hormone called hypocretin. Symptoms can range from a droopy eyelid to buckled knees and falls.
A member of MyNarcolepsyTeam who delivers mail for a living described the risks of cataplexy. “It has been eight months of hell to stay awake and continue working since I drive for a living. I’ve had spells at work where my hands quit working, and I’d drop things or couldn't pick them up. My legs also become weak, and I bump into things.”
Afraid to tell your employer about your diagnosis of narcolepsy? It’s completely natural. Many people worry that revealing this information will reflect poorly on them at work. The symptoms of narcolepsy, however, are hard to hide.
The sooner you discuss narcolepsy with your employer, the sooner you can request accommodations that allow you to be more productive at work. Be ready to explain narcolepsy and its symptoms. Harvard Medical School’s Division of Sleep Medicine has prepared a fact sheet you can share with your human resources department or supervisor. It’s also a good idea to provide a letter from your sleep specialist documenting the diagnosis.
Worried about sharing your condition with co-workers? Telling them how narcolepsy affects you might make them more supportive, particularly if joking or laughing triggers your cataplexy attacks. One member of MyNarcolepsyTeam swears by full disclosure. “If I'm going into a meeting — whether it's one-on-one or a group — I tell them about my problem. So far, everyone understands.”
Medical and vocational experts, as well as members of MyNarcolepsyTeam, have several simple strategies to help people with narcolepsy stay awake at work.
Talk to your doctor about adjusting medications prescribed for narcolepsy – such as Provigil (modafinil), Nuvigil (armodafinil), amphetamines, or Xyrem (sodium oxybate). “I was put on medication and now I can function during the day. Though I still have sleepy spells, I’m much better than before,” shared one member of MyNarcolepsyTeam.
Ask your doctor about stopping or reducing any medications you’re taking that might cause drowsiness, including those used for allergies, depression, anxiety, or seizures. You may also ask about whether a short-acting, wake-promoting drug would help you stay awake during the day.
Napping can improve alertness for one to three hours after you wake. Talk to your employer about taking a 15 to 20 minute nap during the work day. Anything longer may make it harder to fall asleep at night. Doctors advise scheduling brief naps between 2 p.m. and 3 p.m, the time most people struggle to stay awake. “I take a nap in my car at lunchtime,” revealed one MyNarcolepsyTeam member. Another added, “I stop what I’m doing to take a 15 minute power nap so I can function.”
Napping may be easier for those who are working from home during the COVID-19 pandemic, but coronavirus stay-at-home orders may also present challenges. The needs of children and family members could prevent the undisturbed rest breaks you took when working outside the home.
Regular exercise can improve nighttime sleep and make you more alert during the day. At work, it also helps to stand up and walk around every 20 minutes. “I have to get up and move in the afternoon or I will nod off without warning. I’d probably lose my job anywhere else, but my co-workers are aware and very understanding about my condition,” explained one MyNarcolepsyTeam member.
Having a consistent sleep schedule can help you get a better night’s rest with narcolepsy. It’s also important to remove electronic devices from the bedroom and avoid stimulants in the late afternoon or evening. “I’m able to work if I get undisturbed sleep,” confirmed one member of MyNarcolepsyTeam.
Avoid heavy lunches and large amounts of carbohydrates during the day, which can promote drowsiness. Consider eating smaller meals rich in fruits and vegetables. Also avoid alcohol, which can disrupt sleep. “I switched to a healthier diet and it has been a night-and-day difference,” said one member. “I crash far less at work and there’s very little nodding.”
Coffee or caffeinated beverages help some people with narcolepsy keep their eyes open at work. Others experience jitters, anxiety, or a racing heart. If coffee works for you, drink it early in the day to prevent sleep problems. “I need to consume the occasional Monster Energy drink or several cups of espresso,” said one member about his work routine. Another said, “I drink two pots of coffee each day and it doesn't help one iota, and energy drinks make my heart flutter.”
Workers with narcolepsy may be protected under the Americans with Disabilities Act (ADA) in the United States, and via similar laws in other countries. These laws generally require employers to make “reasonable accommodations” for employees with disabilities.
Other types of accommodation requests include:
For some people with narcolepsy, retiring may be the only option. “I’ve had no choice but to quit working because I don't want to put other people in danger on the road if I’m driving,” said one member of MyNarcolepsyTeam.
Qualifying for Social Security Disability Insurance with narcolepsy can be a challenge, according to several MyNarcolepsyTeam members. “Has anyone here actually gotten disability for narcolepsy? I tried a while back and got rejected,” one member asked the community. Another added, “I fought for three years to get disability and finally threw up my hands after rejection from one lawyer after another. I know how disheartening that process can be and, in the end, the system beat me.”
Early diagnosis and treatment for narcolepsy has been associated with better work outcomes and quality of life. People diagnosed with narcolepsy before age 30 reported less unemployment and better health perception than those diagnosed later in life. If you suspect you have a sleep disorder, discuss it with your doctor.
By joining MyNarcolepsyTeam, the social network and online community for those living with narcolepsy, you gain a support group of more than 6,000 members. Excessive daytime sleepiness and cataplexy at work are some of the most-discussed topics.
How does narcolepsy affect your work life? What strategies have you used to promote wakefulness at work? Has your doctor adjusted your medications to improve nighttime sleep and daytime alertness? Share your tips and experiences in a comment below or on MyNarcolepsyTeam. You'll be surprised how many other members have similar stories.