Expert sleep specialists explore the use of nonpharmacologic treatment approaches for the management of narcolepsy.
Russell Rosenberg, PhD, DABSM: Let’s talk a little bit about treatment, and we’ll get into all the different pharmacologic interventions. But when you have a patient with narcolepsy type 1 or type 2, what’s some of your advice and maybe nonpharmacologic approaches?
Margaret Park, MD: I love that this has come up because I tell people all the time that when you have a specific disorder, you have to be more stringent about things, not less. It’s like anything else. If you have high blood pressure, you don’t just say, “I’m on pills. I’ll add salt to everything.” You don’t do that. You have to be a little bit more cognizant about less sodium, more exercise, dietary concerns. You have to be slimmer than everybody else because you have that specific disorder. Thus, when you have a sleep disorder, you have to be more stringent about sleep, not less. There’s this sort of misconception of “Well, I have narcolepsy, I can fall asleep any time, so I’ll go to bed at 8pm. I’ll go to bed at midnight. I’ll do what I need to do.” And I tell them no because you already have something that dysregulates that sleep-wake cycle. Thus, one of the ways that whatever medications that we gave you can work more effectively is if you kind of focus in on sleep, focus in on wake, and make sure that those 2 drives have other inputs because it’s not just the brain, is it? It’s also the body. We know that if you eat at irregular times, and we’ve all experienced this, if you eat too late at night, you have issues. With sleep, you wake up with stomach issues, so you want to have a very good, healthy, clean lifestyle. It’s things that you intuitively know. Go to bed at a regular time, wake up at a regular time, make sure your day is filled with good things that signal to your body that it’s supposed to be awake. Eat at regular times. Hydrate. Exercise. Get some social activity. Get some sunlight, but not too much because I know that dermatologists are always talking to us about skin cancer. But get these routine things done during the day that signal to the rest of your body to help your brain say I’m supposed to be awake. “This is the 16 hours that I’m supposed to be up. I’m supposed to be on. Let’s go ahead and do this.” And certainly, don’t do those things during the 8 hours you’re supposed to be asleep. Don’t wake up in the middle of the night and go do your bills or start cleaning your house. Don’t start worrying or arguing about things.
Hence, I definitely think that a good healthy lifestyle can aid in things because not only is it healthy in general, but we do now know that people who have hypersomnia disorders are more predisposed to certain other medical consequences. There’s lots of medical comorbidities that occur with hypersomnia disorders both within and outside of the sleep realm. And there’s new data showing that there’s a predisposition for cardiovascular events, specifically with narcolepsy patients. And because a lot of the medications that we’ll talk about soon can impact all these different symptoms, you got to make sure that you optimize your body and your health in order to be able to accept any pharmacological treatments that may come your way. Because we have patients like that, where all of a sudden, their liver enzymes are all over the place, or their blood pressure is not very well controlled, and now they have heart failure. I’m like, “Guess what? Can’t give you extra salt load. Guess what? Can I give you an extra adrenergic one?” And then they’re like, “What else am I supposed to do?” I’m like, and so that’s the problem is that you are not the same at 20 years old as you are at 30 years old as you are at 50 years old. And this is a chronic neurological disorder, this isn’t going to go away. You were born with this. You have it. This is what it is. And thus, you need to be able to optimize yourself in order to accept anything that you’re going to introduce in pill form if that makes sense.
Russell Rosenberg, PhD, DABSM: I think this combination of things, often called sleep hygiene, has to be considered when you’re going through your list of things that you’re discussing with some of these narcoleptic patients. They can find that overwhelming. They’re like, “You want me to do how many more things that I’m not doing already?” Behavior change. I think it is really difficult when you’re sleepy. Like it’s hard enough for someone who’s not pathologically sleepy to stick to a diet or stick to an exercise regime, or to stick to any sort of health behavior changes. Thus, I guess starting slow and eventually edging them in that way as they get to have a little more wakefulness due to the intervention, the pharmacologic interventions.
Transcript Edited for Clarity