Narcolepsy: A Day in the Life

Medically Reviewed by Neha Pathak, MD on July 27, 2021

By Luis Ortiz, MD, as told to Hope Cristol

Like most people with narcolepsy, I have good days and bad days. For me, a good day starts with getting out of bed as quickly as possible. If I start thinking about my day when I’m in bed, I may fall back asleep. I take my stimulant medication right away and try to go for a run. Then I go to work at Johns Hopkins All Children’s Hospital in St. Petersburg, FL. I practice sleep medicine for patients ranging from newborn to age 21. I’ll read sleep studies in the morning, see patients in the afternoon, and be home by 6 o’clock feeling pretty good.

On a bad day, I’m dragging. To an outsider, I may look normal. But inside, I'm using all my willpower to keep my eyes open -- especially when I’m doing tasks at work that aren’t very exciting, like typing. At that point, I have to decide whether to push through or stop and take a nap. When I allow myself to take a break, I close my office door, take my pillow, and sleep on the floor for about 15 to 20 minutes. A person with narcolepsy really doesn't need much to recharge, although an hour or two later you may again feel like you haven’t slept in days.

Today, I understand what I need to do retain control over my sleepiness. It wasn't like that growing up.

I'd always been a sleepy child. By fifth or sixth grade, I started to fall asleep in school. By my teens, sometimes I’d fall asleep talking to people. My parents took me to a lot of doctors, but the advice was always the same: Go to sleep earlier; cut back on sweet foods. So, I was just left hanging with this excessive daytime sleepiness through all of high school and a good chunk of college.

When I was about to flunk out my third year of college, I had to do something. I’d always wanted to be a doctor, and I needed to get good grades to go on to medical school. Like many other people with narcolepsy, I didn't see a doctor. I blamed myself for being lazy or lacking motivation to do what I needed to do. Instead, I took a course that I hoped could prop up my GPA. It was on abnormal psychology.

The textbook for it had a section on sleep disorders. Each one included a small description of a person who had the disorder. When I got to the part about a woman with hypersomnia, I thought, “that’s my story.” I had exactly the same symptoms: always feeling sleepy no matter how much I slept, falling asleep in quiet situations, being limited by my sleepiness. I went to my university doctor after that, and she referred me to a sleep specialist.

After an overnight sleep study, a daytime study called the Multiple Sleep Latency Test, and a review of all my symptoms, I had a diagnosis: type 1 narcolepsy with cataplexy. Cataplexy is a temporary loss of muscle control triggered by a sudden, strong emotion. In my case, my knees may buckle if I have sudden, strong emotion, like if I laugh really hard or if I’m surprised.

If any doctor earlier in my life had referred me to a sleep specialist, I would have been diagnosed a lot sooner.

Narcolepsy affects interpersonal relationships and interactions, because when you’re that sleepy, you’re never 100% aware of what’s going on. As a child, a teenager, even a young adult in college, I would put my foot in my mouth a lot. I couldn't read a social situation well enough to not say the wrong thing.

I think I can read people a lot better now. Medication and exercise both help me control my symptoms, but finding the right regimen was a long journey. I’ve progressed through about eight medications since diagnosis to help control both the narcolepsy and my mild cataplexy symptoms.

I also had to adjust my career expectations. In medical school, I initially wanted to go into some kind of surgery, like orthopedic surgery. But I didn't really realize how much narcolepsy would be affecting my life. Working with this this disability, I had to consider what would give me the best life possible, and also help the most people. I had to come to terms with the fact that surgery was not going to be it.

Once I accepted that I wouldn’t be a surgeon, I went into a combined internal medicine/pediatrics residency because I enjoyed the broad range of medical cases, taking care of people, and using knowledge to help people. But as I learned more about narcolepsy to take care of myself, that spilled over to learning more about other sleep disorders. I became the go-to person for other residents who had questions about sleep disorders or sleep studies.

By the end of my residency, I knew I wanted to go into sleep medicine. I then did a pediatric pulmonology fellowship, followed by a sleep medicine fellowship. So now I practice sleep medicine exclusively for children. Sleep medicine is a satisfying career as not only is it closely tied to my life, but it encompasses so many disciplines of medicine. I couldn't imagine doing anything else.

I’m also on the board of directors of the advocacy organization Narcolepsy Network ( We run an online support group, provide local support, provide education materials, and host conferences. Being able to provide support to other people with narcolepsy is very gratifying to me, since I had to do it on my own for some time. While everyone's journey with narcolepsy is different, with the right support, narcolepsy shouldn’t prevent you from living a full life

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Luis Ortiz, MD, Sleep Center, Johns Hopkins All Children’s Hospital, St. Petersburg, FL.

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