How Narcolepsy Affects School and Learning

How Having Narcolepsy Affects Going to School and Learning

How Having Narcolepsy Affects Going to School and Learning
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Updated on August 8, 2023
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One of the common symptoms of narcolepsy is excessive daytime sleepiness, and while this can interfere with daily function in anyone who’s affected, it can significantly impact students. For adolescents and young adults with narcolepsy, being unable to stay awake at school poses a serious challenge that can impede learning.

Narcolepsy is a chronic neurological disorder that affects the brain’s ability to maintain its sleep-wake cycles, resulting in excessive daytime sleepiness. An estimated 200,000 Americans are thought to have the sleep disorder, although the actual numbers may be higher, because many symptoms of narcolepsy — excessive daytime sleepiness, cataplexy (sudden loss of muscle tone while you’re awake, often in response to strong emotions ), hallucinations — are often mistaken for other health issues, such not getting enough sleep or psychiatric or emotional disorders.

Rather than getting adequate, restorative sleep at night that fuels alertness during the day, people with narcolepsy get mixed signals from the brain about when to feel tired, which causes them to fall asleep at random, inopportune times.

While narcolepsy can affect people of any age, symptoms often start in childhood to early adulthood (roughly ages 7 to 25).

 It can take years for someone to get the right diagnosis.

“The age of onset of narcolepsy is usually adolescence, and it’s really a problem if kids don’t get treated,” says Thomas Roth, PhD, founder of the Sleep Disorders and Research Center at Henry Ford Hospital in Detroit. The disorder itself doesn’t affect intelligence, he notes. “But it will certainly affect your ability to learn if you’re not treated properly.”

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Why an Accurate Narcolepsy Diagnosis Is So Important

Kids with narcolepsy can go to school just like their peers, according to sleep-medicine specialist Richard Castriotta, MD, a professor of clinical medicine at the University of Southern California Keck School of Medicine in Los Angeles. The biggest hurdle is making sure students are diagnosed properly, he says, and many physicians are not trained to pick up on the sleep disorder.

“Sometimes [children] are diagnosed as having ADD [attention deficit disorder] or ADHD [attention deficit hyperactivity disorder], or are not diagnosed with anything at all, or people think they are lazy because they are always sleepy,” Dr. Castriotta says.

Getting an accurate narcolepsy diagnosis requires going to a sleep lab and undergoing a round of tests, according to Castriotta. But there are a few warning signs to look for in your student.

Watch out for “sleep attacks,” which is a sudden bout of overwhelming sleepiness that comes on quickly, regardless of how much the child has slept.

Having hallucinations right as they fall asleep or wake up is another symptom of narcolepsy, as is cataplexy, says Sudha Tallavajhula, MD, an associate professor of neurology at McGovern Medical School at The University of Texas Health Science Center and the medical director of the Neurological Sleep Medicine Center at TIRR Memorial Hermann in Houston.

If you see these symptoms in your child, you should have them evaluated by a sleep medicine specialist.

The Role of Narcolepsy Treatment and Prioritizing Sleep When It Comes to School Success

Once a student gets the right diagnosis, the key to minimizing the disruption that narcolepsy brings to their daily life and education is to establish a treatment plan.

Treatment for narcolepsy might include a medication to promote wakefulness, according to Castriotta. One study showed that medication can also aid in combating cataplexy episodes.

 Working with a doctor to optimize medication dosages and schedules can help someone with narcolepsy feel most alert when they need to be, such as during class or study time.

It’s common for children to have packed schedules — thanks to extracurricular activities, family obligations, schoolwork, and more — and sleep, unfortunately, is often sacrificed, says Dr. Roth. But for children with narcolepsy, cutting corners when it comes to proper rest is particularly dangerous, he adds.

“The most important thing is to be very protective of sleep loss,” Roth says. Students should maintain a rigid sleep schedule and not skimp on sleep to study for a big exam.

His advice is to try to sneak in more sleep breaks during the day. “For people with narcolepsy, naps are very refreshing,” says Roth. A good time to squeeze in a 15-minute nap is during lunch break at school (if this can be arranged with the school) or at home right after school. Most teachers and schools can accommodate a student’s need for brief, scheduled naps during the school day.

Other adjustments that can help students with narcolepsy include:

  • Keeping a regular sleep schedule (going to bed and waking up at the same time every day, including on weekends)
  • Getting regular exercise, including exercise breaks, which can boost alertness
  • Limiting after-school activities to schedule adequate time for rest

Communication Between Teachers, Parents, and Students With Narcolepsy Is Important

Often, a teacher may be the first to notice that a student is having trouble staying awake in school or not keeping up with assignments, but they may assume the child or young adult is not sleeping enough at night. Likewise, parents may not realize that their child is falling asleep in class. This is why good communication can play an integral role in diagnosing narcolepsy.

Similarly, treatment and management of narcolepsy requires open and regular communication and teamwork among the child’s parents and other adults in their life. That’s why, in addition to proper treatment and following narcolepsy-healthy lifestyle habits, it’s important for parents to work with a child’s teachers, administrators, coaches, and aides to make sure the student’s needs are being met and stay up to date on any new problems the child may be facing.

This open line of communication can help keep everyone on the same page, manage expectations, and reduce stress, Castriotta notes.

What’s more, kids who feel they’re about to nod off in class can feel empowered to manage their condition without fear of being reprimanded.

Legally, there are two specialized education plans students with a disability (including narcolepsy) can request for accommodations to help them succeed at school:

  • 504 Plan A 504 plan outlines specific accommodations or modifications a student with a physical disability or medical condition may need. It also offers guidance on how each teacher should work with that student to accommodate them. These plans are typically developed by school staff and parents and reviewed at least once a year. They can be applied all the way through postsecondary education.

  • IEP An individual education plan (IEP) outlines how needed accommodations and individualized education for children with learning disabilities will be provided. Teachers, school staff, and parents put together the plan, which requires an assessment by a licensed school psychologist. (It should also include transition planning but is not available after high school.)

The National Center for Learning Disabilities (NCLD) is a good source of information about both types of plans and how to apply for them. For example, the NCLD page about 504 plans describes the school evaluation and assessment process and provides links to more information.

 And the NCLD’s page on IEP plans describes, among other things, the important components of an IEP.

Some accommodations that might help a child with narcolepsy manage the condition and keep up with their studies — either as part of a 504 plan or IEP or simply arranged with the child’s school — include:

  • Getting note-taking assistance or a backup note taker, so if a bout of extreme sleepiness occurs during class, the student has a record of what was missed
  • Recording lectures
  • Scheduling classes around when the student is most alert
  • Scheduling naps
  • Adjusting or negotiating deadlines (concentrating for long periods of time can be especially challenging for people with narcolepsy, says Roth)
  • Allowing the student to stand up during class to walk around to help maintain alertness (remaining sedentary for too long can decrease alertness in people with narcolepsy)
  • Giving the student extra time or active breaks during exams

Tips for Navigating College Successfully if You Have Narcolepsy

College students with narcolepsy will also face some challenges, but with the right treatment and management strategies, they can successfully navigate this milestone. Here are a few tips that may be helpful for college students with narcolepsy:

  • Be mindful of the negative effects of long nights spent partying and drinking. Alcohol disrupts sleep, which can exacerbate narcolepsy symptoms the following day. Plus, staying up significantly later than usual can disrupt your regular sleep schedule and worsen narcolepsy symptoms.

  • Prioritize sleep. It’s not just long nights spent socializing that disrupt sleep. Pulling a late night or all-nighter to study for an exam or finish a project can also wreak havoc on your sleep schedule and incite narcolepsy symptoms. College-age students must protect their sleep and get between seven and eight hours every day, Castriotta says.
  • Set aside time for naps. Scheduling classes so there is time to take a midafternoon nap may help, Castriotta adds.
  • Find a sleep medicine specialist near campus. If you’re attending a college far from home, consider finding a sleep specialist near your school in case your symptoms worsen or change. “Staying with your current doctor is fine if your narcolepsy has been stable for a while without medication changes,” Castriotta says. “But if problems crop up, such as new symptoms, increased fatigue, or irritability, it may be helpful to also have a doctor close to school.”

More Resources for Students With Narcolepsy

One of the challenging aspects of narcolepsy is that so few people understand its profound effect on everyday life, according to teens with the sleep disorder.

Joining a narcolepsy support group can be a tremendous resource for people with the condition — as well as their parents and loved ones — to better understand how others deal with the same challenges, says Roth. The Narcolepsy Network and Wake Up Narcolepsy are two organizations that have several groups in different locations across the United States.

Both organizations also offer several resources for students with narcolepsy, including information on:

  • Standardized test accommodations
  • Getting a 504 plan
  • Clinical trial opportunities
  • Events for deeper involvement and to spread awareness
  • Referrals for sleep centers and specialists
  • Driving laws in each state
  • Where to find support groups

Finally, keep in mind that students of all ages with narcolepsy can do well in school with the right diagnosis, lifestyle adjustments, medication, and support. While it is a condition that cannot be cured, many people can successfully manage their condition, particularly if the disease is caught early.

With additional reporting by Sari Harrar.

EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Resources
  1. Narcolepsy. National Institute of Neurological Disorders and Stroke.
  2. Narcolepsy. Sleep Foundation.
  3. Recent Advances in Treatment for Narcolepsy. Therapeutic Advances in Neurological Disorders.
  4. Living With Narcolepsy: At School. Harvard Medical School Division of Sleep Medicine.
  5. Living With Narcolepsy: Current Management Strategies, Future Prospects, and Overlooked Real-Life Concerns. Nature and Science of Sleep.
  6. For Students. Narcolepsy Network.
  7. School Accommodations for Students With Narcolepsy. Narcolepsy Network.
  8. 504 vs. IEP: What Does Your Child Need. Wake Up Narcolepsy.
  9. ADAAA and Section 504. National Center for Learning Disabilities.
  10. Learn the Law: IDEA. National Center for Learning Disabilities.
  11. Narcolepsy Treatment. Sleep Foundation.
  12. High School With Narcolepsy. Narcolepsy Network.
Additional Sources
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Daniel Barone, MD

Medical Reviewer
Castle Connolly Top Doctor, From NewYork-Presbyterian

Daniel Barone, MD, is the associate medical director of the Center for Sleep Medicine at NewYork-Presbyterian/Weill Cornell Medical Center, where he is also an associate attending neurologist. In addition, he is an associate professor of clinical neurology at Weill Cornell Medical College. He specializes in the evaluation and management of patients with all forms of sleep disorders, including sleep apnea, restless legs syndrome, insomnia, and narcolepsy.

He received his medical degree from New York Medical College in 2006 after graduating summa cum laude from Fordham University in 2001. He completed an internship in internal medicine at St. Vincent's Catholic Medical Center in 2007. The majority of his neurology training was also at St. Vincent's, where he was named chief resident. After St. Vincent's closed in March 2010, he completed his residency in neurology at Beth Israel Medical Center in June 2010, followed by a fellowship in sleep disorders at Stony Brook University Medical Center.

He is certified by the American Board of Psychiatry and Neurology in both neurology and sleep medicine. He is a member of the American Academy of Neurology and a fellow of both the American Academy of Sleep Medicine and the American Neurological Association.

Dr. Barone is the first author of multiple peer-reviewed publications on a variety of topics in sleep medicine. He has appeared in interviews on CNN and CBS News. His first book, Let’s Talk About Sleep, was published in 2018, and his second book, The Story of Sleep: From A to Zzz, was published in 2023.

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Allison Fox

Author

Allison Fox is a journalist and writer in New York City. Most of her freelance work covers health, psychology, science, fitness, fashion, travel, and lifestyle. She was a staff writer for the HuffPost’s Lifestyle vertical, during which she covered breaking health news and a wide variety of trending lifestyle topics, including nutrition and wellness questions from readers. Allison graduated from Binghamton University in New York with a bachelor’s degree in English Literature before earning a master’s degree in Journalism from the City University of New York Graduate School of Journalism. Allison’s byline appears in a range of publications, including Men’s Journal, Consumer Reports, Martha Stewart Weddings, The Hechinger Report and on television for NBC4 New York. If Allison is not writing, she is probably talking… and looking for the kernel that will launch her next article.

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