A Narcolepsy Diagnosis Brings Hope and Challenges

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

By Kimberly Truong, MD, as told to Camille Noe Pagan

As a sleep specialist, I find it incredibly rewarding to treat people with narcolepsy. It can be unnerving to be diagnosed with the disorder. But it’s also a huge relief, because people finally know what’s been making them so sleepy. I can’t tell you how many of them have said to me, “All this time I thought I was crazy!” or “Everyone told me I was just lazy!” A diagnosis brings hope, because there are effective treatments that can make a big difference in extreme daytime drowsiness and sudden “attacks” of sleep, as well as other symptoms like hallucinations.

Sleep and wakefulness impact almost every area of our lives, yet sleep medicine is still a trailblazing specialty that’s considered relatively new. Many doctors get very little training in that area during medical school. Fortunately, I worked as a research assistant at a sleep lab before attending medical school at the University of California, Irvine, and fell in love with sleep medicine then.

When I was doing my fellowship at Stanford University, which is considered the leader in narcolepsy research and treatment, people flew in from around the country to be treated in the narcolepsy clinic I worked in. That was when I really started to understand how underserved narcolepsy really is. 

Most people with narcolepsy aren’t diagnosed until years after they’ve started having symptoms, which typically develop during childhood or young adulthood. There just isn’t a lot of public knowledge about the disorder. When you say narcolepsy, most people just think of someone falling asleep behind the wheel. In reality, there are all kinds of other symptoms, like having really vivid dreams the minute you fall asleep, or experiencing sleep paralysis, which is when your body still feels paralyzed after you wake up. On top of that, narcolepsy is fairly rare, and many general practitioners aren’t familiar with the symptoms. People tell me that their doctors and others in their lives thought their problems were the result of stress, depression, poor sleep habits, or even chronic fatigue syndrome.

It can be heartbreaking to hear people’s stories when they first come to see me. Lots of people with narcolepsy are bullied, especially during childhood. If you have type 1 narcolepsy, one of your symptoms is cataplexy, a sudden muscle weakness or paralysis. So for example, your tongue may stick out or your head may droop, and others may make fun of that. Type 2 narcolepsy, which means you have all the narcolepsy symptoms except cataplexy, is also hard. You still may be falling asleep in the middle of class or work and feel exhausted all the time.

People often fail to get ahead because others think they’re lazy or unmotivated, which couldn’t be further from the truth. One man even told me his boss accused him of constantly being hungover! Another woman who’d been hiding her symptoms from others for years said that she knew how to get by. I was so happy to be able to tell her that she could do better than get by. With treatment, she was able to fully enjoy her life. It’s no surprise that narcolepsy is linked to increased levels of depression and social isolation. Other people don’t understand it -- and until they’re diagnosed, a lot of time the people with narcolepsy don’t, either.

To diagnose someone with narcolepsy, I take a careful health history of their symptoms. Then we do an overnight sleep study to rule out other causes, like sleep apnea. Once we do that, we do another daytime sleep study to test how sleepy they are during the day, how quickly they fall asleep, and if they’re falling into REM sleep. That’s the kind when you’re dreaming, and you don’t move at all. It’s a normal part of the sleep cycle, but if you fall into it right away and your sleep is really fragmented, that’s a sign of narcolepsy.

One of the most exciting things is when they realize they have a natural condition caused by their brain chemistry that requires treatment. (Narcolepsy is believed to result, in part, from low levels of a brain chemical called hypocretin or orexin.) That goes a long way toward easing the shame and self-blame that so many people with narcolepsy have. And once we determine it’s narcolepsy, we begin treatment.

By the time someone sees me, they’ve already been struggling for a while and are usually really grateful to be diagnosed and motivated to start a treatment plan. Still, there are challenges. Narcolepsy is a lifelong condition. You have to start a new routine to manage and ease symptoms. That routine might include setting a consistent bedtime and wake time. I also recommend brief naps throughout the day, but they have to be scheduled. On top of that, you have to take medication at the same time each day. All of those things might have an impact on your work schedule, sleep schedule, or even your social life. But once you realize how beneficial these changes are, you want to stick with your plan.

Not everyone gets it, so sometimes I write school or work letters for people to explain their diagnosis to their bosses, teachers, or even peers. It can take a community effort to make a treatment plan successful, but it can be done.

Treatment can take a couple weeks to a couple months to work. And sometimes I need to make changes to a treatment plan. Sodium oxybate is the first-line treatment for narcolepsy, and it usually works well for sleepiness and cataplexy. But it comes in liquid form, so some people find it difficult to stick with. Fortunately, we have other treatments to try. For example, those who don’t have easy access to sodium oxybate may try antidepressants with a stimulant to manage their symptoms. It can take some trial and error. But again, when someone finally gets diagnosed, they’ve often been living with symptoms for years. They’re really motivated to do what it takes to feel better.

The change in people who get treatment is amazing. They often have better relationships because they aren’t missing out on events and activities due to sleepiness. Their grades or work performance improves, and their mood does, too. So many people I’ve treated have said to me, “I thought this was just how my life was going to be.” But it doesn’t have to be that way. My goal is to help as many people with narcolepsy as possible so they can live full and healthy lives.

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Kimberly Truong, MD, assistant clinical professor, School of Medicine, University of California, Irvine; founder, Earlybird Health, Irvine, CA.

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