Improving Diagnosis and Patient Outcomes in Narcolepsy - Episode 9
Expert sleep specialists review the case of a 22-year-old man who is diagnosed with excessive daytime sleepiness and type 2 narcolepsy and his challenges with treatment.
Russell Rosenberg, PhD, DABSM: Let’s go to another case that will help illustrate how you manage these patients. This is a 22-year-old man who presents to a neurology clinic with continuing challenges in managing his type 2 narcolepsy, and his grades are failing as a result of this. His blood work and organ functions are perfectly normal. In terms of medical history, he was diagnosed with excessive sleepiness and type 2 narcolepsy in high school, so started treatments with amphetamines. He took his medication as prescribed until the first year of college, using much higher doses after that. Here’s a case in which he self-escalated his drug use. To cope with college pressure, he also started abusing methamphetamine on a regular basis. This presents problems but is not particularly unusual. Margaret, what do you think about this case?
Margaret Park, MD: Escalating doses are always a concern. In my experience, once we hit that sweet spot, where we have a certain dose of medications, it’s working, and they don’t have adverse effects, that tends to stay therapeutic for quite a while. If we find that there’s a loss of efficacy for that, I always go back and reevaluate the sleep history to make sure there isn’t something else: being inadvertently sleep deprived, introducing other substances like alcohol into the mix. Maybe they’ve developed other sleep disorders, like sleep apnea. We know there’s a high prevalence in this population.
I always go back to saying, “Why is it no longer working?” The knee-jerk response shouldn’t be to up the dose all the time. If you’ve been doing well for a year, why all of a sudden is it not working well? We need to look at that before we have knee-jerk responses. Let’s add something else, or let’s up the dose. If somebody is self-dosing and self-escalating or seeking outside substances to supplement what I’m already prescribing, then that’s a huge red flag. It means that whatever we’re doing from a medical perspective, they’re seeking outside resources for a reason.
We have to say, “If this medication isn’t working, and you need these outside substances, then why are we continuing this particular medication?” The key thing in this history is that they’re using it as a coping mechanism a lot of times. We see that with other situations too. People use sleep to get away from anxiety, to get away from depression. That’s not what sleep is for. If they’re using sleep medications or awake-modulating medications for the same reason, then that’s a big red flag. In these instances, as you pointed out, it’s not unusual. This isn’t something that’s an original case. We’ve seen this in the clinic before. We bring those patients back in, and we have a very good clinical talk about what’s going on that’s causing dose escalation, that’s causing them to seek outside substances.
In most cases, we try not to prescribe within that realm anymore. Obviously, once you have this tendency for this habit-forming pathway, we want to stay away from that. Fortunately, there are other medications outside that realm that we’re able to use and prescribe. That tends to be successful. We don’t want to tell people, “We’re completely taking things away from you because you did this thing.” It’s not a punishment, it’s got to be a concern about what is going on. We also talk about why you’re having these coping mechanism issues. Going back to the comorbidities of narcolepsy, we know that mood disorder is very highly comorbid with narcolepsy. The same players that play around in the sleep-wake field also play around in the mood field. You can be a tennis player and a basketball player. We ask people to make sure that’s also being evaluated and treated appropriately because when that’s stable, this is stable too. It’s a bidirectional relationship.
Russell Rosenberg, PhD, DABSM: The prevalence of depression among patients with narcolepsy is quite high. Other comorbidities really add to the burden of an almost—in many cases—debilitating disorder.
Transcript Edited for Clarity
Past Medical and Treatment History