Michael J. Thorpy, MD: So managing these lifestyle and psychosocial aspects are very important for patients with narcolepsy, but eventually every patient with narcolepsy is going to require medication as well, aren’t they? Alon, what are the current medications? We’ll get into the newer ones that will become available, but what has been the traditional treatment for narcolepsy up until the past 12 months or so?
Alon Y. Avidan, MD, MPH: Sure. Let me just reflect on a few items that Eveline noted and mention that I also check vitamin D levels on these patients. We find that folks who have vitamin D deficiency have a harder time maintaining wakefulness. Vitamin D, apparently, does have a cofactor and a physiologic mechanism of action, not only on circadian-rhythm vitality but also on sleep and wakefulness. Those who are vitamin D deficient should be supplemented. The other thing is just running a basic laboratory evaluation, paying particular attention to thyroid function and making sure they’re not hypothyroid.
The other thing I wanted to mention is making sure the patient has resources. There are organizations and foundations that support patients with narcolepsy. Also, it’s important to keep in mind that we’re not only treating the patient, but also the family, the significant other, the spouse, the school. Oftentimes, when I write letters asking for special accommodations for the patient, I give them some information on narcolepsy. It’s surprising that a lot of organizations and schools are very attuned to the need to support the patient by providing them with a place to take those power naps. I think it is our role, as clinicians, to really help facilitate that and make it easier for the patient to function.
Russell Rosenberg, PhD, DABSM: I’m sorry to interrupt you, but Eveline was talking about some of the psychosocial aspects and the fact that kids, especially, tend to avoid those situations that evoke a cataplectic episode. So sometimes they’re seen as depressed or they become socially isolated. They’ve isolated themselves because they’re embarrassed—by the tongue thrusting, or the jaw dropping, or whatever experience they’re having. And so, not only is it important to identify these patients early, but also to understand that they may sort of shut down their emotions and stay isolated, which could be a source of significant depression.
Alon Y. Avidan, MD, MPH: And I would also add a driving assessment on a regular basis, just to make sure the patient is safe. We’re not doing the driving assessments ourselves, but rather, raising awareness by engaging the patient to make sure they are OK to drive.