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Management of Narcolepsy and Excessive Daytime Sleepiness - Episode 16

Unmet Needs in the Treatment of Narcolepsy

Michael J. Thorpy, MD: What are you hearing, Eveline, from patients about unmet needs in narcolepsy? What are patients really looking forward to regarding the future management of narcolepsy?

Eveline Honig, MD, MPH: There’s always been the complaint that there are not enough medications available. It takes forever to get a medication approved. That’s also why we’ve been going to the FDA requesting more medications. That’s really very important so people have a choice. And, as this panel said before, not everything works for everybody. People need to experiment. It takes a while. It’s good when there is more of a choice. I think that’s really important.

Michael J. Thorpy, MD: What do you find to be the most difficult symptom in the treatment of narcolepsy? Kiran or Russ, is it the cataplexy, the sleepiness?

Kiran Maski, MD, MPH: For me, it’s the nonspecific symptoms of narcolepsy. It’s the fatigue—what’s described as brain fog. This difficulty thinking, conveying thoughts, or speaking. The symptoms that are not studied or not responsive to medications are really functionally limiting to patients.

Russell Rosenberg, PhD, DABSM: My experience in our research as well as in the clinic is that patients will say, “Some of these medications keep my eyes open, but I just can’t think straight.” So the cognitive complaint that you mentioned, like the brain fog, is pervasive. Just staying awake is not enough for these patients. We really need to find a way to help them overcome the cognitive problems too.

Michael J. Thorpy, MD: Right. I think some of the newer drugs are a bit better than the older ones in that regard. Very rarely will you hear a patient who is on sodium oxybate say, “This has dramatically changed my life. I really feel more normal.” Unfortunately, it doesn’t happen enough. But it does happen occasionally. In regard to the older drugs—particularly the amphetamines and methylphenidate—although they help patients stay awake, patients can still fall asleep. You have a patient with narcolepsy, you give them amphetamines, even high doses, or high doses of methylphenidate, and then you put them in a darkened room and turn off the lights—and they’re asleep right away.

I think part of this may explain some of that sort of background cognitive impairment because the patients are able to do things better with these medications, but there’s still that background pressure for sleep—even though they are seemingly more awake. Hopefully, in the future, the drugs will be more effective at actually eliminating that pressure for sleep that’s in the background.