I was on the trip of a lifetime and I couldn’t keep my eyes open long enough to enjoy it. In October 2011, I embarked on a dream 10-day vacation across Iceland alongside my boyfriend. We traversed hundreds of miles in our rented Jeep Cherokee 4×4, trekking across the nation’s vast countryside, stopping briefly to stand on top of active volcanoes, ride horseback across a black-sand beach and pose for endless pictures in front of giant waterfalls and bubbling geysers. Despite the incredible adventure and breathtaking scenery, I slept through a good portion of our time there, unaware that my inability to stay awake and alert was something more serious than the result of a red eye flight and four-hour time difference. I never would’ve guessed that the vacation would serve as the impetus for a life-changing diagnosis.
At the time, I chalked my overwhelming tiredness up to being a sedentary passenger during our daily 4-5 hours logged in our SUV. The most sparsely populated country in Europe, the nation’s few public roads connecting the areas most desirable to tourists are largely flat and straight and can seem unending. Due to freezing temperatures, unforgiving wind gusts and unpredictable periods of alternating rain showers and snow flurries, we layered our clothing accordingly and kept the vehicle’s heat on a steady blast. All of these factors lead me to reason that the combination of conditions would be enough to make anyone sneak in a few cat naps here and there.
Upon returning home to our apartment, full-time jobs and normal routines however, I couldn’t shake the constant feeling of severe sleepiness that first alarmed me just days earlier. I snoozed through my daily commute on the subway, bailed early from social gatherings to hit the sheets and even began conking out at my desk, and worse, during meetings! The majority of my family’s annual Thanksgiving gathering was spent curled up in an armchair in the corner counting sheep. Soon after, I started having trouble sleeping through the night, and was experiencing vivid, hallucinatory dreams 5-6 times per week. Bouts of sleep paralysis left me frozen in bed, unable to move despite hallucinations involving intruders and even physical attacks. In January, while standing on a trade show floor during a business trip, my knees buckled after a bout of laughter, causing me to grab a nearby desk in order to stay on my feet. My need to sleep at inopportune times quickly spiraled into an embarrassing and unsettling problem.
An otherwise healthy 25-year-old, I turned to Google for a quick, self-diagnosis. Within minutes, it was clear to me that I had narcolepsy, an unusual and misunderstood condition I later learned tends to strike in young adulthood and is characterized, in part, by excessive sleepiness. I wasted no time in making an appointment with a Sleep Specialist at Beth Israel Deaconess Medical Center in Boston, just a couple of miles from both my apartment and office. After battling tears through a series of straightforward health and lifestyle-related questions and a brief physical examination, the doctor gave me information on a nearby lab and instructed me to make appointments for a Polysomnogram and Multiple Sleep Latency Test or MSLT, the most effective methods for diagnosing narcolepsy while simultaneously ruling out other more common disorders like insomnia and sleep apnea.While I slept, what seemed like tons of tiny electrodes monitored my brain waves, eye movement, heart rate and muscle activity. I even had a miniature microphone to record my snoring taped to my throat and a nurse watching my every move on a closed-circuit TV. The next day was spent taking brief naps every two hours to determine how long it took me to enter the sleep stage known as REM. Though necessary, the experience was uncomfortable and unglamorous, to say the least.
After a tedious two weeks of waiting, I met with my doctor to go over the lab results and was given an official diagnosis: I had narcolepsy with cataplexy, a related temporary loss of muscle linked to strong emotions – in my case, laughter. A chronic condition with no cure, one estimate approximates that narcolepsy affects about 1 in every 2,000 Americans. Though more research is needed to say definitively what causes narcolepsy, it’s believed to stem from by a combination of genetic and environmental factors which negatively influence the immune system.
Looking back, though my symptoms only began to intensify less than two years ago, signs of the condition began surfacing in college. It was hard to compete for the title of ‘life of the party’ when I consistently slipped out of keggers well before midnight to crawl into bed. At my mom’s urging, there was also a doctor’s visit a few years back to test for Lyme disease, one of its hallmark characteristics being fatigue. Unfortunately, my then mysterious need to sleep at all hours also took a toll on my relationship with my then live-in (now ex) boyfriend.
Though I still experience frequent bouts of cataplexy, suffer from regular nightmares and sleep paralysis, and wake frequently through the night, I’ve been taking daily doses of prescription stimulants Ritalin and Concerta to manage my symptoms and help me maintain a normal life. I’m encouraged to take two naps per day, but that’s not realistic given that I work in a fast-paced job in PR. Since narcolepsy is a socially-isolating condition, I’m happy to have a support system. There’s a built-in joke about a support group for narcoleptics and I’m not quite mentally ready to attend a meeting. Thankfully, my family and close friends are understanding when sleep takes over and I need to excuse myself for a quick shut-eye session.