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    PERSPECTIVES

    New Hope for Narcolepsy

    What a Narcolepsy Appointment Looks Like

    Reviewed by Neha Pathak on July 27, 2021

    Video Transcript

    [MUSIC PLAYING]

    ANNIE EMBERTSON: Hi, Dr. Emsellem. Good seeing you.

    DR. HELENE EMSELLEM: Good to see you too. How have you been doing?

    ANNIE EMBERTSON: A lot of changes this year. I got married last fall, and I started a new job this March.

    DR. HELENE EMSELLEM: A lot of changes. How have you been coping, in terms of the narcolepsy and life?

    ANNIE EMBERTSON: Pretty good. My new job is working in an inpatient unit at the hospital. So, that's been a little bit of a hard change, trying to get my sleep schedule in order.

    DR. HELENE EMSELLEM: Are your medications keeping you adequately alert during that entire time?

    ANNIE EMBERTSON: Yeah I take my daytime stimulants in the morning. And then usually, I take one of them when I eat lunch. And then I'm usually able to make it the whole day. I'm able to take a 20 minute break in the afternoon.

    DR. HELENE EMSELLEM: So a short nap is refreshing and sort of resets.

    ANNIE EMBERTSON: Yes. In fact, even after my nighttime sleep, oftentimes I wake up not feeling refreshed. But a 20 minute nap will feel like I've slept all night.

    DR. HELENE EMSELLEM: Medicines that you're taking that are directed towards the cataplexy generally help?

    ANNIE EMBERTSON: I take the nighttime medicine that deals with the cataplexy and daytime sleepiness. And since I've been on it, I definitely feel more controlled.

    DR. HELENE EMSELLEM: Do you ever get cataplexy with sadness, or if you get upset?

    ANNIE EMBERTSON: When I get angry at my husband, my knees will buckle. And usually, with mirth or kind of joy, and anything that's very touching to me, like emotionally, I'll have a slight bend in my knees. I have heard that when some women get pregnant, that their symptoms either get worse, or sometimes they go away. Have you had any patients who have been pregnant deal with those symptoms?

    DR. HELENE EMSELLEM: So, a pregnancy is a little more complicated with narcolepsy. I've had patients work through their pregnancies, but the medication's generally not considered to be a healthy thing to be on. The biggest challenge is learning to use the timed naps, as well as exercise, to get you through the day, having a job that will be accommodating.

    ANNIE EMBERTSON: Another question, I guess, is as you age, do people's symptoms get worse, or do they get better? Have you seen any changes in your other patients?

    DR. HELENE EMSELLEM: Mostly, symptoms seem to be quite static over time. With normal aging, we just don't see the disorder disappear, unfortunately. But we also don't usually see it worsen either.

    ANNIE EMBERTSON: I feel like as a health care provider, I'm starting to be more open with colleagues about my sleeping disorder. That's one of my goals, is to try to be more open, and to do more awareness. Because there is a lack of knowledge out there in the general public, for sure.

    DR. HELENE EMSELLEM: Good, good for you to try to come out of that box a little bit and help people understand. In terms of new research and where we're going-- looking at stabilizing nighttime sleep, finding ways to treat the cataplexy, looking at the overall impact on life and social circumstances-- and encouraging people to get the exercise that they need to stay healthy. And try to keep this in its box, manage it, and not let it run your life.

    ANNIE EMBERTSON: Well, that's all the questions I had for you. Thank you so much.

    DR. HELENE EMSELLEM: You're very, very welcome. And I always do tell my patients you have to talk to me about the pregnancy before you talk to your husband, so we can clear the decks with beds.

    [MUSIC PLAYING]

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