Sleep Disorders: A Patient’s Perspective

ON THE EVENING of her homecoming football game, high school freshman Melissa Patterson found herself sitting at home with electrodes attached to her head and a recorder strapped to her waist. The once-active teen had complained of sudden and puzzling symptoms, including unexplained muscle weakness and extreme drowsiness. Following a neurological exam, her doctor ordered a 24-hour EEG. Although results were inconclusive, Melissa was prescribed medication for epilepsy. A self-described “gifted but academically lazy” student, Melissa would spend the next year exhausted, frustrated and socially ostracized. “I was spending so much time battling exhaustion and trying to get my work done, I had no time or energy left to make friends or even socialize,” she recalls. “I was bullied viciously for falling asleep all over the place and for being a complete klutz in gym class. I felt completely isolated.”

By the latter half of ninth grade, it was clear the epilepsy medications were ineffective. Melissa’s neurologist recommended she enroll in a sleep study, and a short time later, Melissa and her family received the shocking news: Melissa had narcolepsy.

Understanding Narcolepsy

Narcolepsy is a neurological disorder that causes excessive daytime sleepiness (EDS), affecting about one in 2,000 people nationwide. Patients diagnosed with narcolepsy may also experience brief episodes of muscle weakness known as cataplexy, vivid dreamlike hallucinations, brief episodes of paralysis when falling asleep or upon awakening (sleep paralysis), and fragmented nighttime sleep. Narcolepsy typically develops during the teen years and, though manageable with treatment, symptoms persist for a lifetime.¹

In recent years, research has suggested that an immune system dysfunction may be a key trigger for narcolepsy. And, a growing body of research has produced evidence of a strong genetic component to the disorder. The latest results of studies into the origins of narcolepsy in the brain provide significant new information on both fronts. A recent study conducted by scientists at the Center for Integrative Genomics at Switzerland’s University of Lausanne pinpoints a specific, immune-related genetic variation as a near-certain prerequisite for the condition.²

Melissa’s narcolepsy presented with almost all of the common symptoms; in addition to EDS and cataplexy, she experienced both hypnagogic and auditory hallucinations, and disrupted nighttime sleep. “Once I was diagnosed, the first thing my doctor did was prescribe stimulants to combat the EDS. The stimulants were effective, but I learned the disruption in the sleep/wake cycle that causes narcolepsy also impacts nighttime sleep,” she explains. “People with narcolepsy often suffer from insomnia, night terrors and other sleep disturbances, in addition to getting very little restorative, slow wave sleep. In my case, I was getting maybe four or five hours on a good night.”

Learning to Accept a New Normal

When it came to identifying an effective treatment plan, Melissa says she had an advantage because her father is a pediatrician. The year she was diagnosed, her dad attended a Narcolepsy Network conference in Seattle and returned with a list of drug recommendations for Melissa’s doctor to try. One of the medications was brand new and fairly controversial marketed under the name Xyrem. Although it was not approved for pediatric use, her doctor agreed to try it. Melissa says, “It’s not an ideal medication, but it gave me my life back.”

Melissa’s full daily treatment regimen also includes modafinil (Provigil), a psychostimulant used to treat EDS; Concerta (methylphenidate), a central nervous system stimulant usually prescribed to treat ADHD; and the antidepressant venlafaxine HCl (Effexor).

Melissa credits the Narcolepsy Network, an organization she now works for, with helping her family navigate those difficult early years. Because narcolepsy is so rare, it can be difficult for people to share information effectively, so in essence, everyone winds up reinventing the wheel during diagnosis and treatment. Melissa says patient support groups are vital because they help people network and link together so that the narcolepsy experience is less isolating.

In the decade since her diagnosis, Melissa says narcolepsy does impact her life, but it’s not the most significant influence anymore. Despite her challenges, she graduated from college and graduate school (with a 3.5 or above GPA), participated in extracurricular activities and even served in student government. Today, she has a master’s degree in public policy, and she now uses her degree by working for the Narcolepsy Network. “At this point, I have a small group of really good friends, so all in all, I’d say I have a pretty good life both because of and in spite of narcolepsy,” says Melissa. “I love having a job that allows me to give back to an organization that did so much for me.”

According to Melissa, the stigma of narcolepsy is still very real, and part of what drives her career is her desire to help educate people about a rare and very misunderstood condition. Narcolepsy patients have long been the subject of misunderstanding and insensitive, inaccurate or humorous portrayals in the media. In 2014, Honda Motor Co. produced a You Tube spot promoting its Honda Fit compact that poked fun at a driver living with narcolepsy. Amid public outcry, the spot was quickly pulled, but the damage was done. Across the nation, patient groups responded angrily, saying the ad “disrespects the 200,000 Americans struggling with this lifelong, incurable sleep disease.”

Melissa understands. “I want people to know it’s not just falling asleep in your soup. There are lots of other symptoms and issues associated with it,” she says. “Disrupted night sleep, ‘brain fog,’ automatic behaviors — these are all things patients with narcolepsy live with but are rarely mentioned. You have to treat all aspects of the condition, not just the EDS.”