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Improving Diagnosis and Patient Outcomes in Narcolepsy - Episode 2

Impact of Narcolepsy on Quality of Life

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Experts in sleep medicine evaluate the impact of narcolepsy on a patient’s quality of life and expand on which symptoms appear to be most debilitating.

Russell Rosenberg, PhD, DABSM: I was just thinking about the range of symptoms that you were discussing before. Some of these can be quite debilitating, can’t they?

Margaret Park, MD: Absolutely. Especially in this day and age, it’s really difficult. We know the hallmark symptom has to be some form of sleepiness, but sleepiness can manifest in different ways. It’s not just that you fall asleep suddenly. It’s been sort of glamorized in Hollywood, and people think it’s funny sometimes, but we know that it’s very concerning for the patient. It’s not fun to fall asleep suddenly in front of your teacher, in front of your boss. But that sleepiness can manifest in other ways, it could be lapses in focus, lapses in concentration, so people accuse you of being lazy or being inattentive. Then there’s a safety concern too. If you’re falling asleep while you’re driving to and from work, that’s a bad one. We’ve had patients who’ve had accidents on Lakeshore Drive here in local Chicago. Thus, it’s concerning from a personal level, and it’s a public health concern too.

Russell Rosenberg, PhD, DABSM: Certainly, it is. You were discussing cataplexy before, this sudden loss of muscle tone. I think a lot of youngsters get embarrassed when they’re with friends, and they begin to even avoid social situations, just because they might have a cataplectic attack.

Margaret Park, MD: Yes, and that’s really unfortunate. I think with both of those symptoms, I’ve had people describe, “Well, it’s not like I can go to after-work dinner and drinks because I don’t have time to take a nap, or I know I’m never going to be able to survive that, or I’m going fall asleep during a late-night movie, and people make fun of me because they call me old man or old woman,” or something like that. And cataplexy can be really scary. If you don’t know what it is, if all of a sudden, you’re super excited at a basketball game, and then you trip and fall, and people think you fainted, that can be very scary for someone. So you either downplay the symptoms, or you become over-worried about the symptoms. Then the other tetrad, the hypnagogic or hypnopompic hallucinations, I certainly don’t want to wake up and see a figure looming over me. That’s very disturbing. I don’t want to hear sounds from another room. And if I want to move and I can’t, that can also be very scary. Thus, while a lot of people do understand what the symptoms are, and come to terms with what they are, the initial presentation can be quite disturbing.

Russell Rosenberg, PhD, DABSM: I’m not sure we mentioned sleep paralysis, which is part of the tetrad as well. About what percentage of your patients have that symptom?

Margaret Park, MD: I know that the field reports say anywhere from 5% to 15%, but I do find that if you really ask the patients, “Have you ever had this in your life,” most people do identify that they’ve had experience with it. All of these symptoms tend to be because of that sleep-wake instability, whether between stages of sleep, or between the sleep and wake states. One intrudes upon the other. Hence, there are various things that turn on and off, whether it’s memory, or dreaming, or recall, or paralysis, or relative motor activation during sleep. All of these things are in a relative state of dyscontrol because there is that instability between these states. Hence, for most of my patients, they definitely identify this as the “biggest issue that I’m having, or this is the frequency of symptoms that I’m having.” With these other symptoms, they may have it now and then, but especially with Google on board at this point—they seem to recognize that this is not something that they have to be overly concerned about. This does happen to some people even outside of narcolepsy. Thus, once you have a recognition of the symptom, they either ignore it or they sort of come to terms with it. I do think that while it is relatively less reported than the other symptoms, I think everyone has had experienced at one point or another with that.

Transcript Edited for Clarity