Narcolepsy – a Rare Neurological Disorder That’s Nothing Like the Movies

October 21, 2013

For me, narcolepsy began with laughter. At age 22, I stood in my apartment laughing with my roommate when my knees buckled as if someone poked behind them. The sensation passed quickly, but in the following months, the same weakness struck my knees, always when laughing at jokes. I asked friends, family members and doctors, but no one had heard of anything like this.

Around the same time, I entered Boston College Law School, eager to succeed. Yet, inevitably, I lost touch with wakefulness in every single class and took trips to the bathroom to wake myself up. Even though I struggled terribly through my classes and fell behind in my homework, I blamed myself– thinking I’d somehow lost my willpower and strength.

At age 23, my sleepiness got worse. One day, I woke up in the parking lot of my law school unsure how I got there. My car was in park, but I had no memory of arriving there. I remembered getting in the car and feeling sleepy on the highway, but could not recall driving onto campus or parking.

How had a 15-minute drive in the morning after nine hours of sleep become dangerous? “Maybe I have a sleep problem,” I thought for the first time. I vowed to address the issue as soon as I completed my first year of law school.

That summer, I visited a primary care doctor, announcing, “I think I have a sleep problem. I’m tired all the time and have trouble studying and driving, even short distances.”

After describing examples, the doctor responded, “Your sleepiness doesn’t sound abnormal. Everyone gets tired driving. Even I have to pull over to get a coffee sometimes.”

I wasn’t sure how to measure this doctor’s sleepiness against mine, but the smallest voice inside me thought, “I don’t think she understands what I’m talking about.”

The doctor ordered tests to check my thyroid and iron and recommended I explore therapy for possible depression. I didn’t feel depressed, I just felt tired. Next, I brought up my knees buckling with laughter. The doctor said she’d never heard of anything like this.

“I’ll let you go see a neurologist, but it’s probably something you’ll just have to get used to,” she said.

My stomach clenched, as the knee-buckling laughter had gotten worse over the past couple of years with more parts of my body giving out on me including my hands, neck and jaw. Leaving health services, I was more lost than ever.

The following week, I visited a sports medicine therapist about an unrelated runner’s knee injury. I mentioned my knee-buckling laughter and the sports therapist thought she’d heard of something like that. She wrote “cataplexy?” on a piece of paper and handed it to me.

Once home, I googled “cataplexy” and knew within seconds that this accounted for my knee-buckling laughter. Cataplexy was a symptom with narcolepsy, something I’d heard of but thought was a joke. The dots began connecting. I’d also experienced hypnagogic hallucinations and sleep paralysis- episodes where I thought I’d woken up to a burglar breaking into my apartment and attacking me in my bed but I was not able to move to respond. These episodes had scared me deeply, but I hadn’t considered these “medical problems.”

For individuals with narcolepsy, finding the right diagnosis is life-changing. Once I suspected narcolepsy, I met with a sleep specialist, had the 24-hour sleep study and was diagnosed with a classic case of “narcolepsy with cataplexy” within two months.

Narcolepsy is a serious chronic neurological disease caused by the brain’s inability to regulate the proper sleep/wake cycle. It affects one in every 2,000 people- including 200,000 Americans and three million people worldwide. Currently there is no cure. Narcolepsy is extremely under-diagnosed with only one-quarter of people with narcolepsy have proper diagnosis and treatment. It’s also a misunderstood disorder, with comic portrayals of individuals falling asleep mid-sentence, while standing up. My experience with the REAL condition is nothing like the movies.

Looking back, my sleepiness began in college and my other symptoms started soon after I graduated. Diagnosed within a few years of symptom onset, I am considered “one of the lucky ones” in the patient community, as delays in diagnosis range from three to 15 years on average.

Diagnosis was just the beginning of my journey with narcolepsy. I look forward to discussing my treatment and coping mechanisms along with my exciting path to becoming a narcolepsy advocate and author.

About The Author: Julie Flygare

wideawakeanddreamingJulie Flygare, JD is a leading narcolepsy spokesperson, published author, blogger and runner diagnosed with narcolepsy and cataplexy in 2007. She received her Bachelor of Arts degree from Brown University in 2005 and her Juris Doctor from Boston College Law School in 2009. Upon recognizing that many doctors were unfamiliar with narcolepsy, Julie collaborated with Harvard Medical School researchers in 2009 to establish a 5-hour educational program based on her story now taught to all Harvard Medical School students.Julie has spoken about narcolepsy to scientific researchers, doctors, nurses, Harvard Medical students, NIH, FDA and CDC government officials and the general public. Her story has been featured by Marie Claire Magazine, ABC News, NBC Universal, Sirius XM Radio and the Discovery Channel.

In 2010, Julie established the NATIONAL SLEEP WALK in Washington DC and received the National Public Awareness Award from Narcolepsy Network. In December 2012, she published “Wide Awake and Dreaming: A Memoir of Narcolepsy,” which won First Place in the 2013 San Francisco Book Festival Award for Biography/Autobiography.

Julie currently lives in Los Angeles, CA and serves on NIH’s Sleep Disorder Research Advisory Board. In 2012 – 2013, Julie led efforts to successfully secure narcolepsy’s place in FDA’s Patient Focused Drug Development Initiative. Most recently, she created the NARCOLEPSY: NOT ALONE international awareness campaign to prove narcolepsy is REAL and we are NOT ALONE.

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