This Is What It Actually Feels Like to Have Narcolepsy

August 20th 2016

College life is chaotic. You stay up late and sometimes neglect sleep (for academic and social reasons). Maybe you fall asleep in class once or twice.

Maybe your crazy university life causes the "freshman 15" to creep up on you, the phenomenon where college students gain weight because of new unhealthy habits.

But being tired is just a normal part of college experience right?

That's what 32-year-old Julie Flygare, the author of a narcolepsy memoir "Wide Awake and Dreaming," initially thought when she was attending law school in Boston. However, it turned out to be something much more serious: narcolepsy.

"I was really just thinking that every college student is tired, never really taking it seriously, until it got so much worse in my first year of law school."

Flygare started Boston College Law School in 2006, but she started having trouble staying awake and focusing on her school work. Her grades started to slip, something she never had a problem with in the past. She blamed her herself for her lack of "will power."

"I felt that I just somehow lost that will power and didn't think that sleep was necessarily the problem, because narcolepsy is just so much more invisible than people perceive it to be and just so much more subtle. I kind of thought it was an energy and motivational issue."

The reality of narcolepsy is much different than it's portrayed in movies and TV shows.

Julie Flygare asleep in a Starbucks. Julie Flygare -

Most people who have narcolepsy don't just suddenly pass out, and even people like Flygare who do experience cataplexy, don't simply fall asleep standing up.

"It's much more jerky and uncomfortable looking, like epilepsy or a seizure," she said. "It's not falling over asleep, and that also goes to the point that it's really just not a joke. It's very serious medical condition."

Cataplexy is the condition that people commonly associate with narcolepsy, where afflicted people have sudden loss of muscle tone.

Julie Flygare sleeping. Julie Flygare -

Flygare's cataplexy initially happened when she laughed or felt an intense emotion, and then it became increasingly worse. She even experienced it when having sex with her boyfriend at the time.

"Almost everyone will say it happens when they laugh at their own joke or are annoyed." she said. "So many triggers are just more common, but sex is definitely a trigger that can happen. That made it really weird."

After almost falling asleep at the wheel, driving to her father's house in New Hampshire, Flygare started looking for medical help.

She eventually saw a specialist and after some tests, she was officially diagnosed with narcolepsy. She began taking medication, monitoring her sleep, and her health improved. She was able to graduate for Boston College Law, and she ran the entire 26.2 miles of the Boston Marathon to raise money for narcolepsy research.

Julie Flygare finishing the Boston Marathon. Julie Flygare -

However it was a challenging race. Flygare was athletic for most of her life, until the narcolepsy made it difficult to exercise.

"I took it slow and steady and I did run-walking," she said. "I wasn't trying to win the marathon but trying to finish, and it was just the most surreal experience ever to actually do it, and it helped me find balance."

She's now the founder and president of Project Sleep, a non-profit aimed at educating the public about sleep disorders.

Julie Flygare the founder of Project Sleep.Julie Flygare -

Dr. Terese Hammond, the director of the University of Southern California Sleep Disorders Center, said that Flygare's story sounds familiar.

"It's typically diagnosed in the late teens or early 20s," he said. "It's usually young adults who experience debilitating sleepiness and they find it increasingly difficult to do daily things."

People with narcolepsy also experience consistent episodes of sleep paralysis, a terrifying type of dream where people are stuck between dreaming and consciousness, but can't move.

Hammond said that people afflicted with narcolepsy are typically missing a protein called orexin.

"It's a protein that's made by cells in part of the brain that's basically a sleep switch," she said. "It's the protein that tips the scale between being awake and falling asleep."

Orexin is probably also the reason that people experiencing narcolepsy symptoms gain weight.

"Narcoleptics in general tend to gain more weight than people who are similar in age and height," said Hammond. "It probably has to do with the orexin because it has a relationship with proteins that control metabolism and hunger."

Beyond taking prescribed medication, Hammond said that people with narcolepsy should make sure to get a healthy amount of sleep.

Even if you aren't experiencing cataplexy, there could still be a medical reason for extreme fatigue. If you're sleeping seven or eight hours a night but still tired, it's time to ask questions.

"When young adults in their teens and 20s have profound sleepiness it's important to touch base with their doctor," she said. "It's still relatively rare, but narcolepsy does happen, and it's important because the quality of life does increase dramatically with treatment."

RELATED: The Reason You Can't Move During Terrifying Dreams

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