Margaret Park, MD, leads the discussion on setting and managing patient expectations for treatment in narcolepsy.
Russell Rosenberg, PhD, DABSM: Let me ask you a little about how you prepare patients. If you’re thinking about a particular treatment modality, how do you get them to understand it and stick with it?
Margaret Park, MD: This is an interesting disorder to treat because you have a lot of power and control over it. These medications don’t modulate it per se. It’s not like diabetes, where if they don’t take their medicine, I’m going to cut off a toe or they’ll go blind. This is something that you take to symptomatically make you feel better. When you understand what it’s meant to do and how it works, and you put it in that context, then you can tell people, “You control when you want to take it. If you don’t want to take it, you don’t have to. If you want to take it, go ahead and take it.” I want people to feel that they’re more in control of what they can take, when they can take it, and what to expect. That’s the biggest thing.
We have quite a few discussions about each medication: how they work and what to expect. Sometimes it’s easier to conceptualize in pieces. If we start with a day, I say, “Think about how you feel when you wake up. How does it feel from breakfast to lunch? How does lunch to dinner feel? How does dinner to bedtime feel?” Then you can figure out which pieces need to be pushed up and which pieces need to be pushed down.
Let’s talk about the wearing-off effect. How long should this medicine last? That’s entirely person dependent. I have people who take it first thing in the morning, and they have insomnia at night. I have people who take it first thing in the morning, and it wears off by lunchtime. Part of it is to reassure them that it doesn’t mean you’re getting used to it when it’s wearing off. That’s just the duration of the medication. Do we go for a longer duration medication? Do we add a small booster? When you talk to them about the simple mechanics of how these medicines should or shouldn’t work, they have a better understanding of when they’re supposed to take it and how they should take it.
In terms of medications, compliance isn’t as big of an issue for me. Compliance toward behavioral treatments is where I try to focus the discussion. These medicines work only if you’ve had good sleep. If you think you’re going to be able to take these medicines, stay up all night, party all night, and then be functional, that’s an unrealistic expectation. These medicines work only if you didn’t have too much alcohol, you got enough sleep, and you’re able to function the way you’re supposed to. If you went to a wedding last night and had a bit too much to drink, you might want to skip whatever nighttime medicines you’re taking.
Daytime medicines may not work as well, and you may be more prone to adverse effects that you weren’t susceptible to when you had good sleep. You may have more jitteriness, anxiety, palpitations, appetite suppression, or moodiness with whatever medications we pick. As long as they understand the mechanics of what the medicines do and what they’re meant to manipulate, they have a more predictable response. When they come back, they can tell you a little better about whether it’s working, whether it’s not working, and what they want to tweak.
Russell Rosenberg, PhD, DABSM: For all of us, it’s important to understand that you can cheat sleep for only so long without consequences. It’s even more important if you have lifelong sleep disorder.
Transcript Edited for Clarity