For most people with narcolepsy, management plans require implementation of ongoing pharmacological therapy to keep symptoms under control. Patients may also need substantial lifestyle adjustments, such as maintaining nocturnal sleep hygiene and regular scheduling of daytime naps. Narcolepsy management plan development should consider balance between the tolerance to available medications and impact of certain comorbidities associated with the disorder. The prevalence of certain comorbidities is higher in patients with narcolepsy compared with matched controls; this is true both at diagnosis and at prolonged follow up. The increased frequency of comorbidities among patients with this condition should be thoroughly reviewed while creating individualized management strategies. Comorbidities that are more prevalent in patients with narcolepsy include psychiatric and sleep conditions, as well as cardiovascular and cardiometabolic conditions.
In episode 2, listen as Sleep Review’s Sree Roy and pulmonologist-sleep specialist Richard K. Bogan, MD, discuss:
- What comorbidities you need to consider when determining whether a patient is an appropriate candidate for a given pharmacotherapy?
- Why are these important in management decisions?
- Can you share any best practices for monitoring the emergence and management of narcolepsy related comorbidities?
- What sleep lifestyle changes are typically incorporated into a narcolepsy management plan?
Sree Roy: Hello and welcome. I’m Sree Roy with Sleep Review, and I’m thrilled to be here with pulmonologist-sleep specialist Richard K. Bogan, MD. Dr. Bogan is a principal owner of Bogan Sleep Consultants in Columbia, South Carolina, and an experienced chief medical officer, clinician and researcher.
This episode is sponsored by Jazz Pharmaceuticals.
Today we’re talking about narcolepsy management plans.
Narcolepsy management plan development generally balances the potential benefits of available medications with safety considerations, as well as the impact of comorbidities. What comorbidities you need to consider when determining whether a patient is an appropriate candidate for a given pharmacotherapy?
Dr. Richard K. Bogan: As we manage our patients, obviously we say, who are you, and what other illnesses do you have?
Patients with narcolepsy tend to have more depression. Anxiety is another. And some of the medications as we manage the disorder could obviously have side effects of anxiety. The patients may also be on antidepressants, typically SSRIs or SNRIs, and we always are monitoring any potential for drug-drug interaction in those particular circumstances. In addition, patients with narcolepsy do have a higher prevalence of hypertension, obesity, even diabetes.
We need to know about underlying medical problems. Long term, there could be problems with cardiovascular disease as well, particularly related to obesity and diabetes. While this is observational data, these are things that we watch for because this is a lifelong disorder, and we’re managing patients over the entire lifetime.
Those are things that we take into consideration. Who are you, what comorbidities do you have and how are these medications going to potentially affect those comorbidities?
Sree Roy: Why are these important in management decisions?
Dr. Richard K. Bogan: Patients come to us for two reasons. They don’t feel good and they want to feel better.
People with narcolepsy are sleepy. They have disrupted nocturnal sleep and they have REM dissociative symptoms, vivid dreams, paralysis, hallucinations, and some of them have cataplexy. They come to us, they want to feel better.
They don’t want to be as sleepy. When you’re sleepy, you have problems with cognition, executive function, thinking, memory, divided tasks, speed of processing, mood, productivity, social workplace interactions. They want all those to be better. And that’s how we approach it in terms of the management. How is your excessive sleepiness bothering you? What can we do to help that? That’s very important.
People don’t want to be sick. One: they don’t want to die and they don’t want to be sick. So we take the comorbidities into account and we manage them for their lifetime. I think about what I can do to help prevent other medical problems from developing.
If you have narcolepsy and there’s a higher prevalence of obesity, then I’m going to talk to you about your diet. I’m going to talk about exercise and I’m going to talk to you about your sleep, because the best thing for sleepiness is sleep. So you need to understand how your brain controls wakefulness, how it controls sleep, what happens, how does it entrain, how do you fit wakefulness and sleep into your daytime? So we teach them about circadian process and some of these other health issues. Lower sodium intake – that’s very important for preventing hypertension. So we take that into account as we manage the patients.
Sree Roy: Can you share any best practices for monitoring the emergence and management of narcolepsy related comorbidities?
Dr. Richard K. Bogan: We really rely on our referring physicians a lot. It’s important that we just don’t prescribe medication and say, “I’ll see you later.” We see the patients on a constant basis, periodic follow-up and monitoring for those particular disorders.
We ask: what is your weight? How much exercise are you doing? What are you doing to your sleep weight processes? Have you had metabolic studies performed? What is your blood sugar? And we make sure that these individuals are well managed over a chronic period of time.
We follow our patients. Certainly, when managing patients with less aggressive medication, we’re going to see them at least every six months, but some of them really require follow-up every three to four months in terms of safety and efficacy of the medications.
Sree Roy: We’ll be right back with Dr. Bogan after a short break.
[Podcast Ad Read]
Sree Roy: What sleep lifestyle changes are typically incorporated into a narcolepsy management plan?
Dr. Richard K. Bogan: That’s a very important question because medicines work better when you take them at the right time. So again, understanding circadian process. Understanding that a brain has control centers that control wakefulness and control centers that control sleep and understanding how those work and how your behavior influences those can help with wake and sleep processes. I call it entrainment or paying attention to your circadian rhythm.
Quite frankly, we need to teach our narcolepsy patients how to nap an appropriate length of time so that they don’t have what we call sleep inertia. I always say the best thing for sleepiness is to sleep. So, appropriate napping and appropriate good sleep makes the medicines work better.
Sree Roy: Excellent. Thank you for sharing that information with us. Is there anywhere the audience can connect with you online? Any social media handles you want to share or websites to upcoming events?
Dr. Richard K. Bogan: I’m not so good at posting on social media, but there are some very good supportive processes. The Narcolepsy Network is a very good one; the Hypersomnia Foundation is another one.
Sree Roy: Excellent. Thank you. And you can find Sleep Review at sleepreviewmag.com. Thank you so much for tuning into this episode.
To dive even deeper:
- Morse AM. Narcolepsy in children and adults: a guide to improved recognition, diagnosis and management. Med Sci (Basel). 2019;7(12):E106.
- de Biase S, Gigli GL, Valente M. Important decisions in choosing the pharmacotherapy for narcoleptics. Expert Opin Pharmacother. 2019;20(5):483-486.
- Wozniak DR, Quinnell TG. Unmet needs of patients with narcolepsy: perspectives on emerging treatment options. Nat Sci Sleep. 2015;7:51-61.
- Abad VC, Guilleminault C. New developments in the management of narcolepsy. Nat Sci Sleep. 2017;9:39-57.
- Ohayon MM. Narcolepsy is complicated by high medical and psychiatric comorbidities: a comparison with the general population. Sleep Med. 2013;14(6):488-492.
- Black J, Reaven NL, Funk SE, et al. Medical comorbidity in narcolepsy: findings from the Burden of Narcolepsy Disease (BOND) study. Sleep Med. 2017;33:13-18.
- Cohen A, Mandrekar J, St Louis EK, Silber MH, Kotagal S. Comorbidities in a community sample of narcolepsy. Sleep Med. 2018;43:14-18.
- Jennum P, Ibsen R, Knudsen S, Kjellberg J. Comorbidity and mortality of narcolepsy: a controlled retro- and prospective national study. Sleep. 2013;36(6):835-40.