Sleep: Why We Need It, How to Get It

Transcript of Presentation:

(00:01): Steve Bauer: Introduction. Hello, and welcome to the workshop, Sleep: Why We Need It, How to Get It. My name is Steve Bauer, and I will be your moderator for this workshop.

(00:11): It's my pleasure to introduce today's speaker, Dr. Rina Fox. Dr. Fox is a licensed clinical health psychologist and assistant professor at the University of Arizona College of Nursing. She is also a member of the Cancer Prevention and Control Program of the University of Arizona Cancer Center.

(00:34): Dr. Fox is particularly interested in the role of sleep disturbance and fatigue and quality of life and the development of interventions to improve sleep outcomes among cancer survivors. Please join me in welcoming Dr. Fox.

(00:55): Dr. Rina Fox: Overview of Talk. Hi, and thank you so much for having me here today. I am so pleased to have the opportunity to speak with you about sleep, why we need it, and how to get it.

(01:06): Let's talk about sleep and what is sleep disturbance or poor sleep, but before we get too deep into what challenging sleep looks like, I want to talk about the importance of sleep.

(01:27): Sleep is as essential to life as air,  food, and water. There was a paper published in the magazine Science, which is one of the thought leaders in scientific inquiry, and in this paper, the author said that "Sleep is a non-negotiable biological state required for the maintenance of human life. Our need for sleep parallels that for air, food, and water."

(01:52): Think about this for a second. It's essentially saying that, without sleep, we as human beings truly can't survive. So is sleep important? Yes. I would say that it is. It's a non-negotiable universal biological need. Everybody needs this no matter the other aspects of their health, no matter the other aspects of their life. It is a universal need.

(02:21): Yet we live in a society that often views sleep as an unproductive use of time, an indicator of weakness, or perhaps laziness. This also leads to pressures that devalue sleep. The importance of sleep on a societal scale, at least historically, has not been very well acknowledged, although this has been changing. More recently, we've seen a reawakening to the importance of sleep health, both in scientific literature as well as in popular media and general social stances.

(02:57): A few decades ago, there was much more of a grind mentality, trying to push through sleepiness, viewing sleep as a shortcoming. Now that is thankfully starting to shift, which I'm pleased to see, given how critical sleep really is to human health.

(03:17): There are five major types of sleep disorders. Coming back to that idea of ‘What is sleep disturbance?. Different organizations will categorize these in different ways, but in general, there are five main types of sleep disorders.  

There's insomnia, which I'm going to speak about in just a second.  

There's sleep apnea or sleep-related breathing disorders. This is when, due to something happening in the body or something happening in the brain for brief periods throughout the night, somebody's breathing will diminish or stop momentarily altogether.

There's hypersomnia, which is kind of the inverse of insomnia. It's a need for excessive sleep.  

Circadian rhythm disorders, when your body and your brain want to be asleep at different times than your schedule in society tell you to be asleep.  

Then, parasomnias, which are kind of a catchall for engaging in behaviors typical of wake during sleep. This can include things like sleepwalking, sleep talking, those types of activities.

(04:22): Insomnia is difficulty falling or staying asleep over several consecutive months. Coming back to insomnia, this is what most people tend to think of when they think about difficulty sleeping. Insomnia, if we look at the diagnostic criteria (this is a diagnosable disorder), involves difficulty falling asleep, difficulty staying asleep, and/or waking up too early.

(04:45): To meet the clinical criteria, insomnia needs to happen on average at least three nights per week, lasting for a period of three months or more. It also needs to be bothersome for the person who's experiencing it, and/or interfere with their ability to live their life the way that they want to.

(05:04): Most of the time, when people are thinking about problems sleeping, they're often thinking about those top three things. They can't fall asleep, they can't stay asleep, or they wake up earlier than they want in the morning. I'm going to focus on those types of symptoms today, although I did want to acknowledge that they are not the only form of sleep difficulties that could be encountered.

(05:24): One of the questions people very frequently have is ‘how much sleep should we be getting, anyway’? Decades ago, there was a silver bullet answer of eight hours. Everybody needed eight hours of sleep, just like everybody needed eight glasses of water during the day. More recently, I'd say within the past 10 or so years, this has shifted, and now there's more flexibility around it.

(05:50): Sleep needs change throughout the lifespan but adults generally need seven or more hours per night. Anybody who's seen a baby or an infant knows they have much higher sleep needs than most adults. Needs do change throughout the lifespan. But in 2015, a consensus statement was released from the American Academy of Sleep Medicine and the Sleep Research Society, which are two leading organizations in terms of sleep health, that said adults should be sleeping seven or more hours per night.  

(06:16) On this graph, the white bars show the range of hours of sleep that's typically more than what is recommended, but that might be appropriate for some people. The dark blue at the bottom shows what is not enough sleep. The medium blue in the middle is what most people are looking for. That white at the top is not necessarily problematic according to these recommendations, but for most people, that much sleep might indicate that something's going on.

(06:48): More recently, there have been some data that have come out specific to cancer, but also in the general population, showing that people who sleep nine or more hours per night may also face some health challenges. So, there is some evidence showing that seven to nine hours is really the sweet spot, although the current consensus guidelines just say seven or more hours.

(07:10): Sleep disorders among cancer patients are very common and much more prevalent than in the general population. Some common questions about sleep in the context of cancer. The first question is, how common is it? It's extremely common. There was some research that came out about three years ago where they looked at every single scientific paper that they could find that had been published that specifically looked at rates of sleep disturbance in the context of cancer. It said, "How often do people report difficulty sleeping?"

(07:38): When they looked at each individual study on its own, the amount ranged from about 15% to nearly 100% of people who participated in individual studies. But when they combined all of those people from all of the different studies and looked at them all at once, the prevalence or the number of people who are reporting sleep difficulties was 61%. So very, very common. It's estimated to be about two or three times higher than in the general population.

(08:08): In terms of who experiences insomnia, it's an equal opportunity offender. This is reported across ages, across sexes, across disease types, across treatment histories, and it can show up at all phases of the trajectory in terms of cancer and in terms of transplant. This, I think, is sometimes surprising for people.

(08:30): There are certain symptoms that people anticipate facing while they're undergoing treatment, while they're facing transplant, things like weight changes, changes to appearance, things along those lines. Oftentimes, once treatment ends some of the symptoms resolve. There's some evidence showing that for a lot of people, sleep disturbance also gets better, but there are people for whom it lasts much longer. In fact, it can last for years.

(08:59): Sleep disorders in cancer patients can persist for many years. These are some findings from a study that came out a couple of years ago. They looked at almost 2,000 people who had a history of cancer, and they looked at them nine years after they had been diagnosed with cancer. Nine years after diagnosis, about one in five respondents reported poor sleep. About half of the people, so about 1,000 of these almost 2,000 people, said that their sleep disturbance was high, and a little bit more than a quarter of the people reported using sleep medication. Again, this is something that is prevalent and has been lasting for a long time.

(09:42): Why does this happen? The short answer is we're not entirely sure, but there are some good theories out there and some research that's been done trying to figure out some of the things that are related to poor sleep?

(09:56): Sleep disorders can arise from cancer itself, pain, medications, or psychological factors. One thing that might be contributing is the disease itself. Other things include psychological factors, like stress, depression, and anxiety. Fear of recurrence is a really big one that can make sleep difficult for people. Pain is also very common. It can be very difficult to sleep while in pain. Certain medications, like steroids, or stimulants, or opiates, can all impact sleep, and some cancer treatments themselves can impact sleep.

(10:27): Looking specifically among people who've had a transplant, we see things like fear of recurrence, cancer distress, some beliefs about sleep that are not particularly helpful, and some behaviors  that can interfere with sleep, and I'm going to talk more about some of those later. These are all things that some research identified as related to sleep problems among people who've had transplants.

(10:54): In terms of the impact this has on other domains of life, I'm constantly being told that, if you are not sleeping well, everything else kind of starts to fall apart. I am not going to argue with that.

(11:08): There is some good evidence showing that poor sleep is related to a number of other challenges in life and can affect mortality and survival rates, including things like reduced quality of life, more fatigue, depression, anxiety, more vasomotor or endocrine symptoms (symptoms typical with menopause), cognitive impairment, and there's some evidence showing that it's associated with mortality, i.e., shorter survival times and shorter progression-free survival.

(11:39): Sleep disorders affects caregivers as well as patients. One thing I always like to highlight is that it's not just the patients. This study came out almost 15 years ago now, so it's a little bit older, but I still think it tells a really important story. This is looking at the number of participants or the percentage of people who were in this study who reported experiencing sleep disturbance, and it looked at both patients and their caregivers. On the left side of the screen, it shows three different measures that were used to look at sleep disturbance, and you can see the percentage reporting sleep disturbance was a little bit different depending upon how it was measured. But across the board, you're seeing 40% or more reporting difficulty sleeping. This is true among both patients in yellow and their caregivers in blue.

(12:26): If you look on the right side, you can see specific domains of sleep difficulties, i.e., specific types of sleep difficulties. Again, you can see those yellow bars and those blue bars are not that far off from each other. Most of the time, the yellow is a little bit higher, indicating a little bit worse sleep, but again, they're not that far off from each other. I think it's important to acknowledge that this is something that happens for both patients as well as caregivers.

(12:54): What can we do about it? I'm not here to set a tone of doom and gloom. The good news is there's a lot that can be done.

(13:33): This is a publication from the National Comprehensive Cancer Network, or NCCN. These are guidelines for people who have had cancer. Again, it's across cancer types. It's across treatments, so some will have had bone marrow transplants (BMT), some of them will not. But these guidelines are designed to apply across all those populations.

(13:54): This is a screenshot of the most recent version that was published in 2024. There are past versions, as well. NCCN has guidelines for doctors and other medical providers. They also have published guidelines intended to be read by patients, and this is their patient handbook focused on survivorship care for late and long-term effects related to cancer. They have a whole section on sleep.

(14:20): I'm going to highlight three of their overall recommendations about sleep, and I'm going to talk about those three a little bit more in-depth.

(14:29): Sleep hygiene refers to changing behaviors that interfere with sleep. The first one is sleep hygiene. Sleep hygiene, in and of itself, is usually not enough to treat something like insomnia once it is present. Sleep hygiene addresses behaviors that interfere with sleep, one of the things that's related to sleep problems among people who've had transplant and who are post-transplants. These are some of those behaviors that can interfere with sleep.

(14:57): Sleep hygiene includes some activities during the daytime, some activities before bedtime, and then activities during bedtime, and I'm going to go into those in a little bit more depth. I am going to talk for 10 seconds about medications, mostly because that is not my area of expertise. As a clinical psychologist, I do not prescribe medications. I'm not trained in pharmacotherapy, so I am not the best person to comment in depth on them. But I did want to mention them very briefly. Then, we're going to talk a little bit more about cognitive behavioral therapy for insomnia.

(15:33): Sleep hygiene begins with changing some behaviors during the day. Starting with sleep hygiene, this is what I call the Dr. Google edition of how to address sleep problems and sleep challenges in the context of cancer as well as post-transplant. It involves changing your behaviors during the day, like  

limiting alcohol and nicotine too close to bedtime,

limiting caffeine too close to bedtime,  

not watching television or using screens too close to bedtime,  

having a comfortable sleep environment that's a comfortable temperature, not too noisy, not too bright,  

eating in an appropriate way leading up to bedtime so you're not going to bed super hungry in a way that's going to interfere with sleep, but you're also not going to bed uncomfortably full in a way that's going to make it difficult for you to sleep, and

exercising during the day, but not too close to bedtime.

(16:26) All of these things are behaviors that could interfere with sleep. You want to make sure that you're getting those sleep-interfering behaviors out of the way of stopping sleep from coming to find you.

(16:43): I think of sleep hygiene much the way I think of dental hygiene. If you brush your teeth and floss your teeth every day, it really decreases the likelihood that you're going to develop cavities, or gum disease, or any other type of oral and tooth-related problems, because you are engaging in behaviors that are protective for your sleep and are going to get rid of the things that could be concerning for your sleep. However, once you have a cavity, once you have gum disease, you can brush and floss to your heart's content and that is not going to touch that problem. By the time the clinical concern is there, the hygiene, in and of itself, is usually not enough.

(17:29): Once sleep disorders develop, sleep hygiene alone may not be enough to solve the problem. I think of sleep hygiene much the same way. These are things that you can do to maximize the likelihood that you don't develop insomnia or other sleep challenges. However, once that concern is there and is clinically relevant, the hygiene is usually not enough, in and of itself, to address it. It doesn't mean it's not important. It just means that it's not a clinical treatment for a clinical problem.

(17:55): Medications for sleep may have short term effects but can be habit-forming and may not help long-term. I said I was going to speak for about five seconds on medications; these are those five seconds. There are a variety of medications that are designed to put people to sleep. These are among the most frequently prescribed medications, or psychotropic prescriptions, in both the general population and specifically among cancer patients. They also, however, come with side effects, so this is something that is very important to talk to your providers about. You want to make very informed decisions about medications that you might be adding.

(18:31): A lot of them are habit-forming, and they tend to be very effective when you're taking them, but their long-term efficacy is not as strong, so when you stop taking the medication, it stops working. I speak about them, not to demonize them, but more because they are very frequently prescribed. I do think that it's important to have in-depth conversations with your care team about these medications if it's something that you're considering taking.

(19:01): Cognitive behavioral therapy (CBT-I) is the gold standard treatment for insomnia. I'm able to speak more about CBT-I, or cognitive behavioral therapy for insomnia. This is considered the gold standard treatment for insomnia disorder across populations, among those who are post-transplant, elsewhere in a chronic disease treatment trajectory, as well as the general population.  

(19:26): CBT-I has several components including relaxation strategies. What does CBT-I look like? It has a variety of different components. That includes things like changing your sleep schedule, changing your behaviors when you're unable to sleep at night, addressing your thoughts related to sleep, both during the day and at bedtime, some education about sleep, and healthy sleep, and sleep needs.

(19:47): CBT-I often includes that sleep hygiene piece, but you'll notice that's not the only piece there – it’s to make sure that those concerns or those behaviors are not interfering with sleep.  It also often includes relaxation strategies. For people who are on a sleep medication and would like to stop taking that sleep medication, it can be used in combination with a medication taper, so a slow removal of that medication with involvement from the prescribing provider.

(20:15): In terms of what it looks like for anybody who has familiarity with CBT in other domains, it looks similar. Usually, it involves a once-a-week interactive session with a trained provider, oftentimes a therapist or psychologist. Sometimes, those sessions are less frequent than once a week, and oftentimes this intervention works quite quickly. So typically, this involves four to eight sessions.

(20:45): CBT-I is also a longer lasting sleep remedy than medications. As I said, meds work every time you take them, and they certainly work faster. CBT-I is more of a long game in terms of helping to retrain your brain and your body how to sleep in your bed in a more continuous way. Meds certainly works faster than CBT-I, but CBT-I works longer than medications.

(21:06): For anybody who's interested, there are a couple of strategies to find a credentialed and trained behavioral sleep medicine provider. There's an organization called the Society of Behavioral Sleep Medicine. They have a website https://www.behavioralsleep.org/, which has a list of their members. The site also includes an international directory of CBT-I registered providers.

(21:28): There are also a variety of online programs and apps available. Some are no cost. Some are subscription-based. They have varying levels of research behind them. But those are also available for people who are more interested in a self-driven process that doesn't involve meeting with a provider.

(21:49): Mindfulness can also reduce sleep disturbance and fatigue in cancer patients. There are a couple of other related treatments. One of them is mindfulness-based treatments. At the risk of oversimplifying the description, I think about mindfulness as work focused on attending to the present moment without judgment. There is a structured therapy that has been developed specifically for insomnia based on mindfulness theory that prioritizes a present moment focus as well as strategies of acceptance, and patience, and openness. There is a focus on integrating these practices into daily life, and there's some evidence showing that this treatment can reduce sleep disturbance and fatigue in cancer patients more than usual care does.

(22:40): There's some evidence showing that bright light can also improve sleep in the context of cancer and transplant. So bright light is commonly used to treat things like seasonal affective disorder. It's also used to treat circadian rhythm disorders I mentioned at the very beginning, because systematic exposure to bright light can normalize circadian rhythm. The goal for those who are using devices is that for the light to approximate or be similar to sunlight, and ideally midday or noon sunlight.

(23:18): Fatigue or tiredness are different from sleepiness. A quick thought about fatigue. A lot of times, people talk about sleep and fatigue as if they're interchangeable, "Oh my gosh. I'm so tired. I have to go to bed. Oh my gosh. I'm so tired. I need to fall asleep right now." But there is an important difference between tiredness, or what I'll think of as fatigue, and sleepiness. There are a lot of different things that can contribute to somebody feeling tired. It could certainly be a lack of sleep and the need for more sleep. They are very highly related.

(24:05): But there are also other things, like extensive physical exercise, major cognitive demands, or going through an emotionally taxing time. There are lots of different ways that you can feel tired, and just because you're tired doesn't necessarily mean you're feeling sleepy. That's where this term ‘tired but wired’ can come from, where you're not ready for sleep, but your energy is really low.

(24:33): Sleepiness is more like feeling that you can't keep your eyes open. You really can only rectify and address it by obtaining sleep. I realize I’m off on a bit of a limb here, but I really like to talk about the distinction between fatigue or tiredness and sleepiness, because I think a lot of people use them interchangeably, but we need to think about fatigue and insomnia specifically.

(25:12): There are a number of things that are related to both fatigue and insomnia. Some are physiological factors like pain or anemia. There are chronobiological factors, like loss of a stable sleep-wake pattern, which are associated with both fatigue and sleep problems. There are psychological factors, including depression and anxiety. Disease type is another one. Both fatigue and insomnia can be unintended effects of treatment, and of late diagnosis and treatment.

(26:10): With that, I'm going to wrap up and prepare for questions. I do want to acknowledge some other scientists who contributed to these slides, specifically Dr. Lisa Wu, Dr. Michael Grandner, and Dr. Alexandria Muench. I want to thank you so much for listening, and I'm happy to take questions.

Question and Answer Session:

(26:52): Steve Bauer: Thank you, Dr. Fox, for this excellent presentation. We will now begin the question and answer session. "When you are post-transplant, do your sleep habits change, especially if you are dealing with graft versus host? Because doesn't GVHD steal so much of your energy?"

(27:26): Dr. Rina Fox: The short answer is yes. Sleep needs can and do often change throughout life for a variety of reasons. Some of them are related to aging, like you saw at the beginning in terms of the natural amount of sleep need varying across the lifespan. Though certainly if something happens like GVHD, or like any type of complication or challenge, or anything related to transplant itself, there can be an impact on the need for sleep. That's part of what you see in terms of the lasting effect.

(28:04): I think this is something that most people are best equipped to acknowledge in themselves if they feel that, "Hey. I used to only need X hours of sleep, and now I really need Y hours of sleep." That's something that I think every person is best equipped to assess within their own body, but yes. Sleep needs can change due to the impact of external things happening.

(28:29): Then, speaking to the second half of the question, that kind of loss of energy, that could be related to sleepiness but could also be more closely related to increased fatigue.

(28:42): Steve Bauer: "What are your thoughts about vitamin D at bedtime to help with sleep, or CBD oil?"

(28:52): Dr. Rina Fox is some research out there that has looked at supplements in terms of their impact on sleep as well as all of ... lots of different aspects of functioning that ... Studies are ... There haven't been tons and tons, so it's a smaller literature, a smaller evidence base that's out there. One thing I do always like to highlight with supplements, though, is that they are unregulated. So this is not something ... And this goes for all supplements. This is not something that the FDA regulates. Certain companies may choose to engage in greater regulatory processes, where they have third-party testing, things like that, but it's not a requirement for them to be able to get their product onto store shelves.

(29:41): So I think that's something to keep in mind, is that it can be unclear how much of the content of the supplements is true to what is on the label. Different companies approach this in different ways, but there's some research showing that sometimes, what the label says is not exactly what is contained within the supplement, because there is no mandated regulation as there is for prescription medications or treatments.  

(30:23): Steve Bauer: "I am frequently sleepy in the morning, even though I have been asleep for at least seven hours. Does CAR T affect this even months later?"

(30:35): Dr. Rina Fox: It could be. I think that's something to discuss with your care team if you're noticing a change. Certainly, any sleep problems, in terms of GVHD, supplement use, and every other answer I’ve given - these are all things that every person should be discussing with their own care team who knows their history, their treatment, and their diagnosis and everything. So always talk to your provider about these things.

(31:08): In terms of morning sleepiness, that’s a phenomenon that happens for a lot of people that is not necessarily indicative of anything wrong. A lot of people will feel sleepy when they first wake up in the morning and have a hard time waking up and getting out of bed. What that's coming from is there are two different physiological systems in our bodies that help our bodies understand when it's time to be asleep and when it's time to be awake. One of those systems is our circadian rhythm. If you take that term circadian, it breaks down into circa, which means about, and dia, which means the day. This circadian rhythm happens about once every day and is one of the components of something that we call a circadian arousal drive. So that basically means you're pushed to feel awake. Right? It's not necessarily a push to feel sleepy at some times. It's your push to feel more alert or your push to feel more awake, and it gets stronger and weaker at different hours of the day. For most people, when you first wake up in the morning, that push for alertness, that push to feel awake, actually is still pretty low. There are reasons why we still wake up in the morning that are separate from that, but that push to feel alert and awake when you first wake up is pretty low. So it can be hard to feel alert and hard to feel awake early in the morning when you're first waking up.

(32:42): There's a term for that called sleep inertia. It's so well-known that it has a name. Sleep inertia is a function of everybody's sleep. Different bodies experience it to different degrees of severity for a number of different individual factors, but that could be what’s happening early in the morning. Again, if you're noticing a change in your experience of sleep or your sensations around sleepiness, it's wise to talk to your own care team about it. But it may be that somebody who feels sleepy upon awakening is just experiencing morning sleep inertia.

(33:24): Steve Bauer: "Sometimes, I fall asleep uncontrolled, like I'll be driving, and all of a sudden, I have trouble keeping my eyes open. I do try to keep a good sleep hygiene. Could it be diabetic, or could it be diet-related? I'm diabetic."

(33:45): Dr. Rina Fox: Regarding the diet piece of the question, I do not know. That is outside of my knowledge base. You should talk to your provider about that, especially in the context of other chronic illnesses like diabetes. There are a couple of things that can contribute to what's often known as ‘excessive daytime sleepiness,’ like that sleepiness that hits when you're awake, even if it feels like you've had enough sleep at night. I'm not saying that this is what's happening in this case. It's just no way for me to know in this context.

(34:24): Sometimes excessive daytime sleepiness occurs when there's sleep apnea. Sleep apnea can happen during the night, and it will lead to a number of awakenings throughout the course of the night. Apnea occurs when something happens in your brain or your body that essentially causes your body to either stop breathing for a short period of time or to have decreased oxygen flow for a short period of time.

(35:04): When that happens, your body will wake you up in order to reinitiate breathing and reinitiate oxygen flow. Sometimes those awakenings are so quick and so superficial that people don't even know that they're happening, but they lead to disrupted and fragmented sleep that can then contribute to increased feelings of sleepiness during the day. That's one of those things that providers will often look for, is that daytime sleepiness in terms of indicating that maybe there's something else happening, that they need to do some more investigating to find out what's there.

(35:43): Increased daytime sleepiness is important to talk about with your care team to make sure that there's nothing else going on. If that sleepiness is happening in a context like while driving or anything else where it introduces risk, that's really important to pay attention to. If there's any concern about driving safely because of sleepiness, I think there's real reasons to see if there are ways to avoid driving until it's resolved, both for the individual's health and wellbeing as well as those of everybody else on the road. I would talk to your care team quickly and make sure that no situation is being created where either you or other people on the road are being put at risk, because that can become quite problematic quite quickly. Definitely something to talk to your care team about.

(36:47): Steve Bauer: "How do you know what your normal or natural circadian rhythm is, and is there a way to adjust it if needed?"

(36:58): Dr. Rina Fox: There are a couple of different ways to investigate what your normal or natural circadian rhythm is. The easiest one is simply to think about when you feel your best. Some people feel like they can think really clearly and be really productive early in the morning. Other people would much rather sleep in late and are much more productive and able to think more clearly later in the day. Some people are kind of right in the middle, where they don't feel great early morning, but by seven o'clock, eight o'clock, they're feeling much better. Then, by like 9:00, 10:00 at night, their brain is kind of kaput.

(37:41): The easiest is to just think about when you feel your best, and that can be helpful. Another way to think about it is, if you had absolutely no responsibilities, and you were on vacation, and nobody needed anything from you at all, and you could sleep whenever you wanted to sleep, be that midnight or noon, it didn't matter, you do whatever feels best for you, think about when your body would be most likely to get its most restful, most rejuvenating sleep. That can help you better understand if you're somebody who's maybe more of a morning lark, where you like to go to bed earlier and wake up earlier, or if you're more of a night owl, where you like to stay up later and wake up later, or if you're an intermediate type, you're right in the middle, again, kind of going to bed at a "socially normal time," at a time that would be pretty typical in modern society, and then waking up at a time that would be pretty typical in modern society.

(38:42): In terms of changing your circadian rhythm, there are things that can be done for it. When I spoke about CBT-I, I spoke about the process of working with a trained therapist or behavioral sleep specialist. This is also something that many behavioral sleep specialists and some clinical sleep specialists are trained in, and there are strategies that can be used. Many of them involve things like melatonin, things like having light exposure, things like timing your activities, like timing your light exposure, timing things like exercise and eating.

(39:23): It is helpful to get some targeted guidance if that's something you have access to, because if the timing is not well-understood, things can accidentally become more problematic and more difficult. You can move your rhythm not in the direction you want to if the timing is not where it's supposed to be. So talking to somebody who's able to provide some personalized guidance on this as a member of your care team can be helpful to make sure that it's being approached in a productive way. But the short answer is yes, there are things that can be done to shift a rhythm.

(40:05): Steve Bauer: "Should I limit daytime naps even if I'm experiencing post-transplant fatigue?"

(40:13): Dr. Rina Fox: Different people will give you different answers about this. In the context of treatment for insomnia, naps are typically recommended as something to be avoided. So the reason for that is this. If you remember, I said there are two processes that help human bodies know when to be awake and when to be asleep. One of them is that circadian rhythm.

(40:50): The other one is your appetite for sleep. This is your drive for sleep that, when you wake up in the morning, is really, really low, because you've just had a sleep episode. It’s just like after you eat breakfast, your appetite is pretty low because you just ate food and you don't need more in that moment. But then, as time and time goes on, your appetite for sleep increases, just like as time goes on after a meal, your appetite for food increases, until it’s satisfied.

(41:23): For somebody who's experiencing insomnia, you want that sleep appetite to be bigger when they go to sleep at the start of the night, so big that it's easier to fall asleep. If you have a nap during the day, that's kind of the same thing as having a snack before dinner. Your appetite has been growing but you feed it and then it's not as big when the time comes for your big meal or for your big sleep at night. Discuss with your care team about your specific circumstance and your specific health and situation. But there are some protocols for treatment for sleep difficulties, particularly among people who've had cancer or transplant or something like that, that are a little bit softer around naps, recognizing the impact of the diagnosis and its treatment on sleep needs.

(42:25): There can sometimes be some softening around that, and every person should talk to their team to get personalized recommendations, but generally the recommendation is that, if there is a true need for a nap, shorter naps that are earlier are oftentimes going to be less disruptive than later naps. Naps that are 20 to 30 minutes long and that happen before mid-afternoon are not as interfering as they would be if they were later.

(43:11): There's also something I learned about a year ago called a ‘nappuccino,’ which is the cute name for it. I believe this came out of the military research, though I could be mistaken about the source. The idea is that it takes about 20 minutes or so, usually, for caffeine to take effect and have its alertness-promoting qualities be experienced by the person who's consuming caffeine. The idea behind this is essentially, you would drink a cup of coffee, immediately try and fall asleep, and take a nap for about 20 minutes or so. Then, when you wake up from that nap, the alertness-promoting qualities of the caffeine will kick into effect and promote alertness for longer.

(44:01): So that's one suggestion for how to strategically approach napping. I have never tried it myself so I can't comment on that. But I know that there is some research out there looking at this nappuccino as one potential strategy.

(44:24) Steve Bauer: Earlier you asked for some inputs from the listeners as to what they individually have for their sleep aids. I was going to list a few of those if you could address them, Dr. Fox. One is, "Trick for helping with sleep issues, taking my prednisone in the morning, not too late in the day."

(44:50): Dr. Rina Fox: Timing your meds that are going to be sleep disruptive and making sure that you're taking them at a time that's not going to interfere with sleep, so being mindful of the timing. We talked about it for behaviors in the context of sleep hygiene, but it certainly goes for other medications, as well. I think that's a great thing to ask your prescribing providers about as well. If there's a medication that's being prescribed, you can ask, "Is this something that's likely to interfere with my sleep, and if so, is there a specific time of day that I should try and take it?" That can help you be strategic about how you're taking those medications. I think that's a great strategy.

(45:32): Steve Bauer: "No phone one hour before bed along with melatonin and reading in bed."

(45:42): Dr. Rina Fox: No phone for an hour before bed was on that slide with all of the different sleep hygiene strategies. That's something that is getting more and more traction, although different people have different relationships with technology use. Different people are going to feel the effects of technology use at night differently. But for those who find that it's interfering with their sleep, I really like the idea of having that phone turn-off time and having that hour of the debrief from your day and an opportunity for a wind-down routine that can help cue your brain and body that it's time for sleep. Removing the phone from that routine can be really impactful.

(46:33): Phones are often quite activating, both from the light that they emit, which can be impactful in terms of your sleepiness, but also the content. The content can be impactful in terms of emotions as well as cognitive load and cognitive activation. So decreasing phone use is great. Melatonin is something that's used quite widely. As I mentioned, it can be an aspect of adjusting somebody's circadian rhythm. I do like to comment, particularly when I'm speaking with people who have a history of any form of chronic illness, melatonin is a hormone, and it is considered a supplement, so it's not regulated by the FDA, just like the rest of the supplements, and again, it's a hormone. So for anybody who has had a hormone-linked cancer, for example, I think it's very important to talk about melatonin use with your providers and with your care team. Anytime you're incorporating any form of supplement into your regimen, talk to your care team to ensure that there's no potential interaction or concerns about it.

(47:53): Steve Bauer: "Praying with scripture, relaxation and exercises, and concentration on breathing."

(48:04): Dr. Rina Fox: Those sound kind of like some of the components in CBT-I, like the relaxation components that are coming into play there. For people for whom scripture is meaningful and calming, that's a great strategy to incorporate into that wind-down routine.

(48:41): Steve Bauer: "Warm shower, no light. Sometimes, lavender scents, and no reading or shows on TV."

(48:53): Dr. Rina Fox: I’m guessing that these are things that happen right before bedtime that don't necessarily happen at other times of the day. So certainly, bathing may occur at various times of the day, but the lavender, removing the light or decreasing the light, and having a dim environment instead, not having the television, not having non-sleep behaviors in the bed or in the bedroom, my guess is that these are all things that are unique to that wind-down time right before bed.

(49:35): That can be really helpful in terms of helping your brain understand that bedtime is coming and in terms of helping your body start to experience and recognize that sleepiness feeling, perhaps as separate from that feeling of tiredness and fatigue. Things that are unique to preparing for that bed as part of that wind-down can be helpful for cueing your body that it's time for sleep.

(50:10): Steve Bauer: "Considering caffeine half-life, when to cut off prior to bedtime?"

(50:16): Dr. Rina Fox: I have not read anything that is hard and fast saying "This should be the latest you have caffeine." Different bodies tend to have different levels of sensitivity to caffeine. There may be newer information out there but, when I was trained, I was told that the half-life of caffeine is about eight to 10 hours. So that means that it could potentially keep working to keep you feel alert for eight to 10 hours after you've consumed it. Some people said to be safe, go up to 12 hours.

(50:56): If you work backwards from that, you would say, "Okay. Whatever time I want to go to bed, I should stop drinking caffeine eight to 10 or 12 hours before that time." Now, again, you will run into people who will tell you, "Oh. I can have a double cappuccino, and get into bed immediately afterwards, and fall asleep no problem," and I'm sure they're right. I don't imagine that they're lying about that. I'm sure that's true.

(51:21): It can be that the caffeine may still impact the quality of your sleep and what your sleep looks like. Even if it feels like you're sleeping, what's happening inside your brain during sleep might be a little bit different after caffeine. So that's something to keep in mind, but again, I haven't really heard, nor do I think there really is, a universal hard and fast "This is the caffeine cutoff time." You can have some trial and error with for yourself to see if maybe that eight to 12-hour window prior to desired bedtime is something that is helpful for you.

(52:04): Steve Bauer: "During recovery from transplant, I experienced vivid, frightening dreams or nightmares frequently. Is this abnormal?"

(52:16): Dr. Rina Fox: I am not entirely sure if that's abnormal in the context of transplant recovery. I can imagine, though, based on the way it's described, whether it's normal or not, it sounds rather distressing and unpleasant. There are some treatments out there for nightmares. Just as we have cognitive behavioral therapy for insomnia, there's also a cognitive behavioral therapy for nightmare disorder that is available.

(52:50): There are fewer people trained in it, but it is an available protocol that somebody who's trained specifically in behavioral sleep intervention or treating sleep without using medications would be able to, potentially, implement if they're trained in it. If this is something that is a lasting concern that's continuing to be impactful, and unpleasant, and distressing, there are treatments out there for nightmares.

(53:21): Steve Bauer: "How can I distinguish between normal fatigue from recovery and problematic sleep disruption?"

(53:34): Dr. Rina Fox: I think normal fatigue and problematic sleep disruption are interesting, because it's combining sleep and fatigue, where fatigue and sleep are not necessarily quite the same thing, fatigue and sleepiness. In terms of fatigue related to transplant and related to recovery, there's another session specifically focused on fatigue, so I would recommend attending that or watching it after the fact, if you can, to learn a little bit more about that.

(54:10): There may be some comments in there about distinguishing fatigue from some of these other things. There is some information about fatigue in this context rather than general fatigue in the general population. If somebody is experiencing difficulties with sleep to an extent that it's interfering with your ability to live life the way you want to, it's bothersome, it is getting in the way of you feeling the way you want to feel, that's worth raising to your care team to discuss. Even if this is something that's not surprising for somebody in the context of their treatment history, oftentimes there are still things that can be tried to address it.

(55:00): It's possible that they're not going to be effective. CBT-I doesn't work for everybody who gets it. It works for many people, but it doesn't work for everybody. Whether this is ‘expected’ or not, I prefer to focus on what impact it's having and if there's something that can be done to potentially make it a little bit less challenging, even if it isn't surprising. Talk to your care team and see if there's any additional support that can be provided or accessed.

(55:42): Steve Bauer: Closing. All right. On behalf of BMT InfoNet and our partners, I'd like to thank Dr. Fox for this helpful and important presentation. Thank you, the audience, for your excellent questions. Please contact BMT InfoNet if we can help you in any way, and I hope you have a great day. Thank you.

(56:05): Dr. Rina Fox: Thank you so much.