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.
Years to Diagnosis
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.
Learning to Thrive
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 (narcolepsynetwork.org). 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