Challenges in the Management of Narcolepsy


Thomas E. Scammell, MD; Heidi Moawad, MD; Phyllis C. Zee, MD, PhD; and Ruth Benca, MD, PhD, discuss abuse, side effects, and other obstacles associated with traditional medications.

Thomas E. Scammell, MD: Dr. Moawad, what do you see are some of the challenges with these traditional medicines regarding abuse or side effects and so forth? What are the biggest pitfalls and concerns in your mind?

Heidi Moawad, MD: I have, unfortunately, heard patients talking about sharing medications with friends or family members who are not given those prescriptions. Sometimes, also diagnosing friends or family members and saying. I have heard from people who have said, “I tried it, because my roommate took it or a family member took it, and it worked. So maybe this condition is what I have,” and working backwards. That is one problem. Also, potentially inconsistent use is another thing; someone might be feeling better one week so they stop taking it or do not take as much. Self-regulating can end up being problematic. Some people will report that they self-regulated or shared but some people do not necessarily share that information as willingly.

Thomas E. Scammell, MD: I think that once somebody gets on a good regimen, they appreciate the benefits of those promoting medicines enough that they are motivated to take it consistently every day. But certainly stopping some medicines or taking them intermittently—such as if somebody is taking an antidepressant for their cataplexy –can be a catastrophe with rebound cataplexy. Dr. Benca, Dr. Zee, what do you think? More comments on abuse or side effect issues that come up?

Ruth Benca, MD, PhD: Well, I think one thing to keep in mind, since we are talking to a psychiatric audience, is that many psychiatrists are very comfortable prescribing large doses of amphetamines for things like attention deficit disorders and hyperactivity disorders. We are cautioning to be a little bit more careful with these medications. Keep that in mind as well.

Phyllis C. Zee, MD, PhD: I think that cardiovascular side effects potentially from the amphetamines are foremost in my mind, especially if it is a chronic disease, a chronic disorder. We are going to be taking care of these patients for a long time as they get older, middle aged and so forth. That is something that weighs on me when I start somebody on one of these types of medications. Not so much with sodium oxybate. We're talking about the amphetamines.

Thomas E. Scammell, MD: You are probably familiar with the papers by Yves Dauvilliers showing that just having narcolepsy itself predisposes people to hypertension. When you add on some of these sympathomimetic medicines, I think you can get into some pretty good concerns there.

Transcript edited for clarity

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