People with idiopathic hypersomnia face a significant disease burden. Idiopathic hypersomnia is associated with challenges that impact daily living activities, such as limitations at school, work, interpersonal relationships, and social activities. Various impairments include:
- Impacts on attention and cognition, which can be characterized as “brain fog”
- The burden of memory problems and a feeling of the mind going blank or making a mistake in a habitual activity
Public health and safety are also impacted, as more severe causes of sleepiness can be cause for accidents.
Management strategies may not address the underlying sleep dysfunction associated, resulting in suboptimal symptom management. Patient survey and registry data suggest patients continue to experience symptoms of idiopathic hypersomnia and residual disease burden.
In episode 4, listen as Sleep Review’s Sree Roy and pulmonologist-sleep specialist Richard K. Bogan, MD, discuss:
- What are some limits that people with idiopathic hypersomnia can experience in their daily living activities?
- How do people with idiopathic hypersomnia commonly describe “brain fog,” and what are some of the real-life consequences it?
- How does prolonged sleep inertia place a burden on the people with idiopathic hypersomnia who experience this symptom?
- What do you see as the burden of idiopathic hypersomnia on public health and safety?
- Beyond medications, how is idiopathic hypersomnia typically managed to control for symptoms as much as possible?
- How do you determine when therapy for idiopathic hypersomnia has been optimized, and what symptoms may remain at this point?
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 are chatting about the burden of idiopathic hypersomnia.
What are some limits that people with idiopathic hypersomnia can experience in their daily living activities, such as school-related or social activities?
Dr. Richard Bogan:
Yeah, this disorder is more prevalent in young females, by the way. And of course, normally as humans, we are awake in the day and asleep at night. We have state stability, but these individuals are sleepy, no matter how much sleep they get. And they usually have high degree of sleep efficiency, interestingly enough, though not always. But in general, no trouble going to sleep, staying asleep, but it’s very difficult to wake up. The sleep inertia is terrible. They’ll tell you, “I’m setting multiple alarms, and I can turn the alarm off and not even remember that I did that.” And sometimes, we call that sleep drunkenness, but the sleep inertia is terrible.
And then, when they do wake up, even after a good night’s sleep, they’re still foggy and sleepy, and that sleepiness translates into, you know, it slows the brain down. So, speed of processing, divided tasks, motivation, executive function, mood, productivity, quality of life, all those things are affected. And they always feel like they need to nap, though they resist naps. Because when they nap, they don’t nap for just 30 minutes; they can nap for hours. And then, when they wake up, they go through the sleep inertia again. So, these individuals are very, very sleepy.
How do people with idiopathic hypersomnia commonly describe brain fog, and what are some of the real-life consequences of it?
Dr. Richard Bogan:
The bottom line is they feel drugged. The brain is slow. And as a result, again, executive function, speed of processing, memory, motivation, all of those. And unfortunately, many of them think it’s a personality thing. I mean, they feel guilty about it, and it’s biology. It’s not a personality. And that can lead to some problems with mood and things of that nature, but the brain is just slow and the desire to nap, I mean, you’ve felt this yourself when you’ve been sleep-deprived, you’re like, “I can’t wait to crawl into bed.” They feel this all day, and it’s very, very uncomfortable.
How does prolonged sleep inertia place a burden on people with idiopathic hypersomnia who experience this symptom?
Dr. Richard Bogan:
Well, we talked about this earlier. I mean, they have very low self-esteem. Many of them do. They think they’re lazy. Something’s wrong with them personally, when it’s biology. But the other is, because of the difficulty awakening in the morning, they really have a hard time waking up and getting started. So oftentimes, they’re late for work or late for school or have trouble getting up to get the kids off to school. And so, it’s a real problem. And so, when you’re running late and then when you get there, you’re still foggy. We talked about the brain fog. I mean, you’re still foggy and sleepy and desire to take a nap, but the sleep inertia is really problematic.
What do you see as a burden of idiopathic hypersomnia on public health and safety? For example, excessive sleepiness is recognized to be a contributing cause and, occasionally, a primary cause of a sizable percent of vehicle crashes.
Dr. Richard Bogan:
Yeah, we have more data, I think, in narcolepsy, but some of it is really not very well studied. But what, when you talk to patients though, particularly narcolepsy patients, 30 to 40% will tell you that they have sleep-related accidents. I mean they, while they’re cooking or doing chores or things, but including driving. It’s probably estimated that the sleep-related accidents, driving accidents, may be twice what the normal population is. But, you know, that’s soft data. But what we do understand is that these individuals adapt. They learn. They typically oftentimes avoid doing long-distance driving. They may do short driving and so keep their trips under 20 minutes or 30 minutes. And so, they, it certainly impacts them. So, when they’re going on a long trip, they don’t drive. They let someone else drive.
We’ll be right back with Dr. Bogan after this short break.
This episode is sponsored by Jazz Pharmaceuticals. Jazz Pharmaceuticals is a global biopharmaceutical company with a focus in neuroscience and sleep medicine, committed to improving the lives of patients and their families. Jazz is also the proud creator of sleepcountshcp.com. The goal of sleepcountshcp.com is to increase awareness of idiopathic hypersomnia and support symptom recognition to help patients receive a quality diagnosis and appropriate disease management. Sleepcountshcp.com provides evidence-based educational materials and resources to improve communication between healthcare professionals and their patients. Visit jazzpharma.com and sleepcountshcp.com for more information.
Beyond medications, how is idiopathic hypersomnia typically managed to control for the symptoms as much as possible?
Dr. Richard Bogan:
Yeah, this is problematic because in narcolepsy patients, we use strategic naps. A narcolepsy patient is a great power napper. They can take a 20-minute nap and feel better or 30-minute nap and feel better. And we ask them to avoid taking long naps because they have sleep inertia. But they can do that. They can take a 20-minute nap, boom, wake up and feel refreshed. Now, it’s not sustainable. But idiopathic hypersomnia patients are not good nappers. In fact, they dread taking a nap because, again, they go through the sleep inertia again, and the naps are two or three hours, and then they still sleep. So, many of them are long sleepers. I also tell them the best thing for sleepiness is sleep, as a rule. So, obviously protecting your circadian rhythm, what time does your brain naturally get sleepy, sun sets? And we all get sleepy; some early, some late.
Understanding how your brain works, creating a good environment to get good sleep is really important. The medicines work better. And so, understanding that. The naps are problematic because many of these individuals are really long sleepers. They could sleep 12, 13, 15 hours a day, if they could. So, the naps, strategically, are not particularly that beneficial.
So behaviorally, I think the big thing is understand sleep-wake processes, your circadian rhythm, try to entrain, make sure you get a good night’s sleep. Many of the patients are really grateful just to understand that they’re not alone, that this is biology; it’s not a personality issue. And as a result, we have support organizations, I think, that are quite frankly good in terms of helping these individuals, the Hypersomnia Foundation being one of them. But I think helping them with their workplace or scholastic performance, for the professors to understand they may need more time for testing. They may have to get up and walk around just to clear the fog. So, helping them relate their story to their employers and to the school and family, I think, are all important.
How do you determine when therapy for idiopathic hypersomnia has been optimized, and what symptoms may remain at this point?
Dr. Richard Bogan:
My goal is for the patients to wake up easily and the sleep inertia is not problematic. Once they do wake up, I want them to be, now we all have sleep inertia. It takes, that’s why we go for our first cup of coffee, first thing in the morning. It takes our brain a while to wake up. But once they get going, I want them to be alert and not feel tired. A sleepy brain is a tired brain. Now, not all fatigue is sleepiness, but if you’re sleepy, you’re tired. And again, speed of processing and memory and motivation, quality of life, divided tasks, all those things are important. So, we ask patients about those. There’s actually a questionnaire, the Idiopathic Hypersomnia Severity Scale, where we can, it looks at different domains of the sleep inertia and the daytime sleepiness and quality of life and driving and interpersonal relationships as different domains.
We ask patients about those domains. I rarely use the questionnaire per se in the management of patients, but I’m sort of extrapolating the data from that. So I ask them, do you nap? Do you feel the need to nap? Has the fog lifted? But again, speed of processing, and it’s basically an evaluation of the quality of wakefulness. So what is the quality of your wakefulness? And does the sleepiness interfere with your function or keep you from doing things that you want to do? And that’s our goal, is to have that quality of wakefulness adequate for these individuals or ideal. There’s good, better, and best, but, you know, ideal for these patients is to improve their quality of life so they can get things done that they need to do.
Thanks so much for chatting with us about the burden of idiopathic hypersomnia. You can find Sleep Review at sleepreviewmag.com. Thank you so much for tuning in to this episode.
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