Michael J. Thorpy, MD: Narcolepsy is a chronic neurological disorder that affects the brain’s ability to control sleep-wake cycles, which can greatly affect daily activities. Excessive daytime sleepiness is a major symptom of narcolepsy, and it’s characterized by the persistence of sleepiness regardless of how much sleep somebody gets at night. If left untreated, narcolepsy can interfere with psychological, social, and cognitive functions.
In this NeurologyLive® Peer Exchange discussion entitled, “Management of Narcolepsy and Excessive Daytime Sleepiness,” I am joined by a panel of my colleagues—all experts in the field of sleep disorders. Together we are going to discuss the use of new therapeutic options, review the latest clinical trials, and provide practical perspective on how the recent data might apply to your clinical practice.
I am Dr Michael Thorpy, the director of the Sleep-Wake Disorders Center at the Montefiore Medical Center in Bronx, New York, and professor of neurology at the Albert Einstein College of Medicine.
Participating today on our distinguished panel are Dr Alon Avidan, professor in the Department of Neurology at the David Geffen School of Medicine at UCLA and director of the UCLA Sleep Disorders Center in Los Angeles, California; Dr Eveline Honig, executive director of Narcolepsy Network in New York; Dr Kiran Maski, assistant professor of Neurology at Harvard Medical School, and director of the Sleep Clinic in the Department of Neurology at Boston Children’s Hospital in Boston, Massachusetts; and Dr Russell Rosenberg, chief science officer and CEO of Neurotrials Research in Atlanta, Georgia.
Thank you so much for joining us… Let’s begin.
First of all, I want to ask Dr Rosenberg about excessive daytime sleepiness. Can you tell us a little bit about how you distinguish this? Everybody is a bit tired at some time in their life. How do we know when somebody really has a problem with excessive daytime sleepiness? How does that sleepiness affect them?
Russell Rosenberg, PhD, DABSM: Thank you, Dr Thorpy. This is an interesting question because I think everyone here on the panel today could say they experience tiredness or excessive sleepiness from time to time. It’s highly prevalent in our society that people are sleepy, so it is a difficult task or an important task to determine the normal amount of sleepiness that many of us really experience versus when it becomes a clinical matter that requires seeing a physician. We shouldn’t forget here on the panel that the most common reason for excessive sleepiness is just chronic sleep deprivation. This is self-imposed. We’re looking at the TV or [on] the internet and are cutting our sleep short. But when it gets to a point where it is interfering with work, with relationships, with other social activities—and then in situations where an individual has to stay alert while driving or doing some other activities where the individual must stay away to be safe—then it really becomes a serious problem.
Michael J. Thorpy, MD: Now, Kiran, is it easy to recognize this in children, or is it more difficult to pick up excessive sleepiness in children?
Kiran Maski, MD, MPH: That’s a good question. I think it’s more difficult because kids, oftentimes, look hyperactive, or impulsive, or inattentive when they’re sleepy. Sometimes I hear that they were misdiagnosed as having attention-deficit/hyperactivity disorder and were not recognized for the sleepiness. Sometimes they have behavioral components—they’re more irritable or they have more aggressive behaviors when they’re sleepy—and that catches people’s attention. And parents usually pick up on this and notice that if the child takes a nap, they actually get a lot better.
Michael J. Thorpy, MD: So that’s quite different from the adult who tends to be more and more tired and lethargic as they get sleepy. But sometimes children can become hyperactive, and that may be a sign. What tests can we use to help assess if somebody has excessive sleepiness?
Russell Rosenberg, PhD, DABSM: I think many people wait way too long to address their sleepiness or excessive sleepiness before they go to a physician. The tests that we can use in the clinic include things like the Epworth Sleepiness Scale. This is an 8-item questionnaire that a patient can fill out. They’re asked how likely it is they’re going to doze off in a variety of situations. This is a fairly well-validated and reliable measure for adults. There is a child version, of course. This is a self-report measure.
There are a few tests that we can do in the sleep laboratory that help measure the amount of sleep pressure or sleep propensity. One of them that’s commonly used is called the multiple sleep latency test [MSLT], in which an individual has already undergone an overnight sleep test. They stay the next day and do a series of naps at 2-hour intervals, and we measure how fast they fall asleep in those 2-hour intervals. Of course, we’re encouraging them to stay awake in between those naps. And then we’re also looking at what type of sleep they might have had during those naps to make some decisions about a diagnosis. So it’s a very useful tool.
Michael J. Thorpy, MD: You need to have a sleep center to do that, so you need a sleep specialist to be involved in doing the MSLT?
Russell Rosenberg, PhD, DABSM: Sure, sure. And these tests cannot be done at home. I know there’s a big increase in using home sleep tests, but you can’t really measure the excessive sleepiness in a home sleep test. They must come into the sleep laboratory.
Michael J. Thorpy, MD: Now, what about the Epworth Sleepiness Scale? Is this something that neurologists or primary care physicians can give to their patients?
Russell Rosenberg, PhD, DABSM: Absolutely. People complete that before seeing the physician. They can complete it online. So, yeah, I think it’s very useful. It’s very easy to interpret. It doesn’t take a lot of fancy arithmetic. You add up the score. If the score is 10 or more, that’s considered abnormally sleepy. And we see patients who are terribly sleepy, excessively sleepy, scoring 15 or more. You can’t really diagnose someone with a specific disorder from the Epworth Sleepiness Scale, but it does give the clinician a sense of just how sleepy this person is across a variety of situations. It is easily done in a neurologist’s office or by a primary care professional.