Role of Specialists in Narcolepsy Management

EP: 1.Case Presentation: Newly Diagnosed Narcolepsy With Cataplexy

EP: 2.Presentation of Cataplexy in Patients With Narcolepsy

EP: 3.Pitolisant in Newly Diagnosed Narcolepsy With Cataplexy

EP: 4.Case Presentation: Schizoaffective Disorder with Narcolepsy

EP: 5.Psychiatric Comorbidities Common in Narcolepsy

EP: 6.Approaching Treatment of Narcolepsy

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EP: 7.Role of Specialists in Narcolepsy Management

EP: 8.Unmet Needs in the Treatment of Narcolepsy

EP: 9.Narcolepsy Treatment Advice

Haramandeep Singh, MD: In terms of the roles and responsibilities of the neurologists and psychiatrists in narcolepsy treatment, what are some of the challenges that arise in having multiple perspectives on 1 patient? If the psychiatrist sees a patient for comorbid depression, what are some challenges that come with that?

Debra Stultz, MD: I’m sorry, did you mean challenges with different providers?

Haramandeep Singh, MD: Yes, with a neurologist and psychiatrists who may have different perspectives on the same patient.

Debra Stultz, MD: Sometimes there are some issues. You have to have somebody who’s the captain of the ship when you’re treating narcolepsy. That’s probably the person who diagnoses it if they’re comfortable with treating that and using the medicines. Some of my colleagues who are sleep doctors or pulmonary doctors don’t do a lot of narcolepsy and are more than happy to send the patient with narcolepsy or insomnia to me because I’m used to these medicines and how we prescribe them. In that case, they’re saying, “You do this, and if you need me, let me know.”

I’ve also had sleep doctors refer to me and say, “I want you to treat the depression before I treat the narcolepsy,” I say, “We probably should go in with both at the same time. I’ll treat the depression, and I’ll treat with something that might help some of these symptoms, but we need to treat the narcolepsy too.” Sometimes there’s thinking, “What can we do to get this patient better faster?” In my opinion, it’s usually treating both.

If there’s cataplexy and other hints of neurological things, then we need a neurologist to help us look for secondary causes of narcolepsy that we might not be thinking about. Do they have MS [multiple sclerosis] or Parkinson’s disease? One of my other favorite things to monitor for is head injuries. A lot of our patients with narcolepsy have a past history of some head injuries. Did that play in? Having a neurologist on board is very helpful. We have to decide who’s going to treat what so that we’re not doubling up on medications, or even with the primary care provider.

One of the things I’d mention about pitolisant, when we were talking about the first case, is that we always have to tell the patients, “You need to tell me if you change any medicines, and you need to tell your primary care providers that you’re on this medicine.” I had a patient who was on an antidepressant and was on the lower dose of pitolisant. She was doing great, so I didn’t see her for 6 months. When she came back in, I asked, “How are you doing?” She said, “I’m doing pretty well, but I had some depression, so my primary care provider started Wellbutrin.” Then we had the patient on 2 antidepressants and pitolisant that could affect the 2D6. It’s also important to let the primary care doctor know what you’re doing and who’s doing what so that we’re not all throwing things in there.

Haramandeep Singh, MD: Great point. That communication among other providers is so important. I like the comment about the captain of the ship. If you’re the expert in treating this, then it’s your responsibility to take the reins and say, “I’m going to treat the narcolepsy.” I have a lot of doctors who I work with who are psychiatrists and neurologists. When they’re treating something else, whether it’s depression, anxiety, or whatever else is going on for the patient, they should continue that role, but let me be the 1 who’s treating the narcolepsy. The education, communication, and dialogue among doctors is so important.

Debra Stultz, MD: We need psychiatrists and therapists involved in treating narcolepsy because we often have a patient who’s had symptoms and excessive daytime sleepiness or cataplexy for years, and it’s greatly affected their life, failures, disappointments, and not understanding. They may get the diagnosis of narcolepsy and be all excited that somebody figured it out. Initially, it’s relief. But then they start looking at the way life could have been better had somebody caught it 10 years ago. They look at their relationships and the ballgames they missed for 8 to 10 years of their kids’ childhood. There’s a grieving process that happens with narcolepsy. They may have depression for years for a variety of reasons, but then there’s some stuff that goes on once you get the diagnosis and you start treating. Having a psychiatrist or therapist on board for treating narcolepsy is invaluable for the sleep physician or neurologist who’s treating a patient with narcolepsy with just the medicines.

Haramandeep Singh, MD: Absolutely, I agree 100%. The more you get in terms of mental health providers who can help in managing a chronic condition in general is a huge benefit.

Debra Stultz, MD: That’s right. These patients with narcolepsy will wake up and suddenly have more energy, and they’re excited about life. They start trying to make some changes and will do this and do that. Everybody else in their world is like, “We’ve been doing fine on our own here.” The change and relationship issues are often hard. There’s a whole dynamic to the diagnosis of narcolepsy for not only the patient, but also the significant other, children, and even work.

Haramandeep Singh, MD: Good point. Many times, I’ve heard the patient with narcolepsy get branded as being lazy or not motivated. That branding gets put into the family member and the spouse. They have to have the education. Therapy is such a useful part of that process as well in helping them with the family situation.

Debra Stultz, MD: Right. The self-esteem stuff starts at a very young age. These sleepy kids go to school and have trouble with grades, get to school late, miss school a lot, or get in trouble because they’re fussy and irritable. The self-esteem stuff starts then.

Haramandeep Singh, MD: Exactly. As we know, that’s when it starts. We know that the amount of time it takes for the diagnosis of narcolepsy is often 15 to 20 years before the patients are recognized. Their symptoms started way back when. We know with sleep disorders it takes a long time in general, but with narcolepsy especially it takes a long time.

Transcript edited for clarity.

Disclosures:

Dr Stultz has disclosed that she serves as a consultant on the advisory board for Harmony Biosciences and that she receives support in her role with the speaker’s bureau for Harmony Biosciences and Jazz Pharmaceuticals.

Dr Singh has disclosed that he serves as a consultant and receives support in his role with the speaker's bureau for Jazz Pharmaceuticals and Harmony Biosciences.