The truth about narcolepsy

What do you think of when you hear the word narcolepsy?

While it may be one of the most well-known sleep disorders, a true understanding of what it means to be narcoleptic is often not understood. In fact, many people who are narcoleptic write off their symptoms as something else.

For Elise Janci, that was initially the case.

Janci’s problems started her senior year of college in the fall of 2013 when she was 21 years old.

At that time, she noticed she was having trouble staying awake in class, and at times, she “lost track of time”.

“I remember one day, I was walking to class on campus. I lived about half a mile away, and one minute, I was leaving to get to class, and before I knew it, I ‘woke up’ on campus with no recollection of the actual walk in,” she explains. “It was disconcerting to say the least.”

In addition, Janci recalls many mornings waking up after a full night’s sleep feeling exhausted 30 minutes after she woke up.

“The exhaustion went on for a few months before it started really impacting my grades,” she recalls. “I would be working in the chemistry lab and would literally have to step out to take a nap in the lobby because I was always so tired. At some point that semester, I had to drop half my classes because I couldn’t keep up. But I just kept thinking, ‘Maybe the classes are just too hard for me.’”

So Janci decided when she was home on winter break, she would go see a doctor. She told the doctor all her symptoms, and he suggested she might have narcolepsy and recommended she participate in a sleep study.

At the time, Janci was away at school in Bloomington, so she agreed to do the study after she graduated.

“I remember everyone just thought I was depressed,” she says. “I was sleeping all the time, and once, I even slept for three days straight. I remember waking up and being a little freaked out like, ‘Could I really have slept that long?’”

Thankfully, Janci was able to finish college in the spring of 2014 with a little help from some medications her general practitioner had prescribed to treat some of her symptoms. “It was enough to help me squeak by that last semester of school.”

So Janci returned with a week break before she entered EMT school in downtown Chicago. With things being “ok”, she was still unsure about the sleep study. But that all changed when she started EMT school.

“I remember one day, I was on the train headed home from school downtown, and I was particularly tired that day, fighting to stay awake,” she recalls. “All of sudden, I started having a vivid hallucination of a wolf dog coming at me about to attack. It was terrifying because it felt so real at that the time. I had a second similar experience on a train ride home days later, and that’s when I knew I had to get treatment.”

Janci immediately made an appointment with Dr. Yelena Tumashova, a sleep medicine specialist at Advocate Lutheran General Hospital in Park Ridge, Ill.

Dr. Tumashova did a sleep study on Janci in the sleep lab at Lutheran and diagnosed her with narcolepsy.

“Elise’s case is characteristic of patients with narcolepsy,” says Dr. Tumashova. “Feelings of constant sleepiness and tiredness, dream-like hallucinations upon waking up or falling asleep and even loss of time are typical of patients with this disorder.”

As a result of the diagnosis, Dr. Tumashova prescribed her a medication to treat the disorder, and within days, she felt like herself again.

“I literally cried with happiness when the medication started to work,” she explains. “My thoughts were clear again. I could finally find the right words to speak. The world felt sharp and crisp for the first time in a long time. I finally felt happy and ‘normal’, for lack of a better word. Before I was diagnosed, the best way to describe how I felt was like sitting looking out at the world with a sheer curtain over everything. I could see shapes and movement, but nothing was sharp or clear. After my treatment, it felt like the curtain was lifted. I could finally be the person I wanted to be because I had enough energy again. “

Three and a half years later, 26-year-old-Janci is fully functioning as a paramedic in a clinic and still feels like herself. “When I started the medication, I was in school still, so I was on the maximum dose because I was constantly sitting. Now that I’ve graduated and am working as a paramedic, I’ve even been able to lower the dosage because I’m always moving and walking around. The busy atmosphere keeps me on my toes, and combined with the medication, I almost feel totally normal. I’m happier than I’ve ever been because I feel like myself again. Dr. Tumashova truly changed my life.”