Shelby Harris

Shelby Harris Psy.D.

The Land of Nod

Notes on Narcolepsy: Part 3

From the patient's perspective

Posted Jul 25, 2012

It is one thing to see the impact that narcolepsy can have on others, but it is a very different experience to be the patient with narcolepsy. With this in mind, I've asked my friend, Julie Flygare, to write a guest post on her personal experience with narcolepsy and how it has impacted her life. Julie maintains a blog at that chronicles her challenges with narcolepsy. She gives a lot of inspiration to others and is a great example of how to persevere—even at her sleepiest. Thanks, Julie!

Guest Post by Julie Flygare

“I think I have a sleep problem,” I announced to the doctor at Boston College health services the summer after my first year in law school. At age 24, I was having increasing difficulty staying awake in school and while driving.

“We all get tired when driving,” the doctor responded, “Even I have to pull over to drink coffee and take a break sometimes.”

I didn’t know how to compare my sleepiness to hers. The smallest voice in my head thought, “I don’t think we are talking about the same kind of sleepiness.”

In truth, my sleepiness was wildly out of control, but I’d lost touch with wakefulness so slowly I didn’t realize how far I’d fallen to sleep.

I remember one night, as an undergrad student at Brown University, an unusually powerful tiredness came over me while studying in the library. Excuses were plentiful—everyone is tired in college. Plus, I was a varsity athlete with a strenuous practice schedule.

In college, I began taking trips to the bathroom during class to wake myself up, running cold water over my face, pinching my skin, and slapping myself across the face.

Despite my bathroom tactics, I jerked awake in class often, opening my eyes to make direct eye-contact with my professors. I stopped going to professors’ office hours. How dare I take their time when I’d wasted their time sleeping in class?

My snoozing became problematic at home, too. One Thanksgiving, I drove two hours to reach my parents’ house and promptly fell asleep on the couch. After Thanksgiving dinner, sleep sucked me back again. My family, including my adorable nephews, enjoyed the day together while I lay unconscious nearby. No one spoke of it at the time, but my family judged me as rude.

In law school, I fell asleep often while doing my homework. I scolded myself and scrambled to keep up with the workload. Had I lost my willpower and drive to succeed?

It wasn’t until the end of my first year of law school when I struggled to drive 15 minutes in the morning after a full night’s sleep that I realized maybe “willpower” wasn’t the problem.

Now at health services to address the problem—the doctor doubted my problem. She ordered tests to check for anemia and thyroid issues. She encouraged me to contact psychological services—perhaps it was depression. I didn’t feel depressed, I just felt tired, but I couldn’t fully trust my instincts.

During the appointment, I inquired about another problem—my knees were buckling with laughter. It began a few years earlier but had gotten worse. The doctor said she’d never heard of anything like this. “It’s probably something you’ll have to get used to,” she said.

Leaving health services, my list of unanswered questions grew longer.

A week later, I visited a sports medicine doctor about an unrelated sports injury and mentioned my knees buckling with laughter.

“I think I’ve heard of that,” the sports doctor said and wrote “cataplexy (?)” on a scrap piece of paper for me to look up at home.

Back in my apartment, I went online and read that: “Cataplexy is the loss of muscle tone due to strong emotion such as exhilaration, anger, fear, surprise, orgasm, awe, embarrassment, and laughter.” I gasped and read on. “Cataplexy is a symptom of narcolepsy.”

Narcolepsy? I’d heard of narcolepsy, but I’d thought it was a joke about falling asleep while standing or talking. I had no idea it was a real illness. Maybe this explained my sleepiness—although I’d never fallen asleep standing or talking.

I learned about symptoms of narcolepsy called “sleep paralysis” and “hypnopompic and hypnagogic hallucinations.” I’d been having oddly vivid nightmares recently, just like these descriptions.

The news was overwhelming. In one way, it was as if someone was holding a mirror up to show me the last few years of my life from a different perspective. My understanding of who I was—and how I was—started to change completely. I sat in front of my computer screen, clicking through various websites and soaking in the realization that these different parts of my life, things I had not understood, things I had let slip, were now coming together.

On the other hand, the words on the screen were as meaningless as a horoscope or fortune cookie. I had no idea what any of this meant for my future or who to talk to about it.

As luck would have it, a law school friend knew a narcolepsy specialist in the area. During my first appointment, I spoke quickly, eager to tell the neurologist everything. He did not gawk or stare, instead responding with head-nods and affirmations. Everything that was freakish to the outside world was understood in this small examination room.

After much discussion, the neurologist was confident I had “narcolepsy with cataplexy,” but I needed to undergo the official diagnostic test, a 24-hour sleep study, for confirmation.

After the sleep study, the neurologist explained that my results indicated “textbook” narcolepsy with cataplexy.

“You reached R.E.M. sleep in all five naps!” he exclaimed with wide-eyes of wonder.

I looked at the paper but couldn’t make sense of the numbers, letters and graphs. Unfamiliar with the acronyms, it was difficult to make sense of the page, nevermind to draw meaning or closure.

Supposedly, this explained everything: my collapsing, nightmares, and sleepiness. Here it was—the greatest loss of my life, neatly plotted along an x and y axis.

Narcolepsy hadn’t changed the way I looked on the outside. Only this paper, unintelligible to most people (myself included) but striking to a neurologist, spoke of the greater changes within.

As an ambitious law student, I wasn’t happy to be diagnosed with narcolepsy. However, this affirmed that my losing battle to sleepiness was truly biological and neurological—and not something within my personal control, as I’d thought for so long.