Referral to a Sleep Specialist to Treat Narcolepsy

Michael J. Thorpy, MD: Once a patient receives a diagnosis, goes to a sleep center, and gets put on medication, what is the role of the neurologist and primary care physician? How should they be interacting with the sleep specialist, Eveline?

Eveline Honig, MD, MPH: I think it’s important they keep in close contact with the sleep physician, with the sleep center. Very often, there’s embarrassment, “I don’t know too much about narcolepsy.” That should be taken away so the patient can be treated in the most successful way possible. I think it’s important to stay connected. Maybe sleep physicians should even offer to stay in touch and make themselves available to answer questions. I think it’s important to get some guidance.

Michael J. Thorpy, MD: Yes, it’s a little bit more difficult with the new medications. I think a lot of physicians who are not seeing many patients with narcolepsy are probably not familiar with these newer medications. What do you think?

Alon Y. Avidan, MD, MPH: I absolutely agree, and I’ll second what Eveline mentioned. In type 2 narcolepsy, which doesn’t have cataplexy, some individuals may transition into type 1 narcolepsy later in life. They may present with cataplexy at aged 30 or 40. So I think it’s important to maintain that alliance to continually watch for the development of new symptoms of narcolepsy. The treatment armamentarium is really getting complex. So I think it’s also important to keep up with the literature and to know the specific types of medications and for which patients they would be appropriate. And that, again, goes back to mechanism of action and looking at comorbidities like sleep apnea. So the landscape is getting interesting. We have more tools available but, at the same time, it’s getting a bit more complex.

Russell Rosenberg, PhD, DABSM: Many of us have been in the field a long time. We did a pretty good job of educating physicians and health care providers about sleep apnea. Think about how many people have been identified. I think we need to do the same with narcolepsy that we did with OSA [obstructive sleep apnea] years ago. And that’s going to take programs like this and others to make sure they understand all the symptoms. I think you bring up a good point. When physicians are looking for narcolepsy in their practice—primary care or neurology—they have to realize that all these symptoms don’t emerge simultaneously. Some of these symptoms can emerge down the road, sometimes even years later. That shouldn’t dissuade them from still thinking it might be narcolepsy.