Don't Count Sheep! Learn How to Fall and Stay Asleep

Many people experience sleep difficulties after transplant and CAR T-cell therapy.  Learn why and what you can do about it.

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Don't Count Sheep. Learn How to Fall and Stay Asleep

April 29, 2024

Presenter: Rina Fox  PhD, MPH, Assistant Professor at the University of Arizona College of Nursing.

Summary:  The importance of sleep is evidenced by the fact that humans spend nearly a third of their lives sleeping, yet sleep disturbances are very common. This presentation reviews common sleep difficulties and strategies to improve sleep.

Presentation is 37 minutes long, followed by 23 minutes of Q&A


  • There are five main types of sleep disorders: insomnia, sleep apnea, hypersomnia, circadian rhythm disorders, and parasomnias. Insomnia is the most common.
  • The amount of sleep an individual needs varies depending on your age and other factors.
  • The gold standard for treating insomnia disorders is cognitive behavioral therapy for insomnia (CBT-I).

Key Points:

(05:07): Symptoms of insomnia include difficulty falling asleep, difficulty staying asleep and/or waking up too early that happen, on average, at least three nights per week, for three months or longer.

(08:50): Insomnia tends to be worse shortly after transplant, and then improves, but may never get back to what it was before transplant.

(17:39): Sleep hygiene targets behaviors that can interfere with sleep such as avoiding alcohol before bedtime or caffeine in the late afternoon limiting screen time before bedtime; turning off lights at bedtime; stopping exercise four hours before bedtime; and avoiding heavy dinners.

(24:44): Setting an alarm to wake you in the morning, and avoiding checking the time during the night can help promote better sleep.

(27:18): Sleep medication only works when taken and can have side effects, like increasing the risk of falls.

(28:04): The gold standard for treating insomnia is cognitive behavioral therapy for insomnia (CBT-I). Licensed CBT-I providers can be found through the Society of Behavioral Sleep Medicine. Apps such as Sleepio, CBTiCoach and Insomnia Coach provide digital CBT-I online for those who prefer not to work one-on-one with a therapist.

(30:34): Mindfulness-based treatments can help with insomnia.

(31:17): There is some evidence that bright light therapy can help with insomnia.

(32:58): Fatigue is different than feeling sleepy.  Fatigue is about lack of energy.

(35:50): Som strategies to address fatigue include distraction, certain medication, cognitive behavioral therapy, bright light and physical activity.

Transcript of Presentation:

(00:00): [Andrea Feldmar]:   Welcome to the workshop. Don't Count Sheep. Learn How to Fall and Stay Asleep. My name is Andrea Feldmar and I will be your moderator for this workshop.

(00:11): It's my pleasure to introduce today's speaker. Dr. Rina Fox is a licensed clinical health psychologist and Assistant Professor at the University of Arizona College of Nursing. She's also a member of the Cancer Prevention and Control Program of the University of Arizona Cancer Center. Dr. Fox is particularly interested in the role of sleep disturbance and fatigue in quality of life and the development of interventions to improve sleep outcomes among cancer survivors. Please join me in welcoming Dr. Fox.

(00:48): [Dr. Rina Fox]:   Introduction. Hi, thank you so much for having me here today. I am really excited to talk to you all about a topic that I am extremely passionate about. Sleeping. I think many people certainly here and really in general find this topic of particular interest, of particular importance. We've really seen sleep over the past maybe five, 10 years, come into focus in US society in a much more central way than we've seen in past years, and I think it's really highlighted how valuable this topic really is and how important it is, so I'm so pleased for the opportunity to speak to you about it today.

(01:37): Humans spend a third of their life sleeping. Somebody once said something to me that really, really stuck with me and I found it so interesting. If you think about, about how much time we all spend sleeping on any given night, obviously there's a high variability and we're going to get in a couple of minutes to talking about what sleep "should look like" on any given night.

But if you think about it, let's say most people spend around eight hours per night asleep. That means, out of our 24-hour day, we are spending a third of our time sleeping. You spread that out over the course of your life, we as human beings, spend about a third of our lives asleep. And what was said to me that struck me so much is that if sleep is not an absolutely critical part of our functioning and survival as a species, that is the biggest evolutionary mistake that has ever occurred.

(02:37): If we think about how much time we spend sleeping, it really highlights how important sleep is. And a lot of people experience sleep disturbance or what the field is more recently calling sleep health. Like we think about our mental health or our physical health or maybe our cardiovascular health, we're starting to think more about our sleep health.

(03:02): Insomnia is a common sleep disorder characterized by chronic difficulty falling asleep, staying asleep and unplanned early morning awakenings. And spoiler alert, I'm going to focus on only one of these today, but I do want to mention the others. The five main types include insomnia. This is where a lot of the literature is focused. This is what most people think of when they think about sleep disturbance. It's chronic difficulty falling asleep, chronic difficulty staying asleep and chronic difficulty staying asleep as long as you want in the morning. You might experience early morning awakenings where you can't fall back to sleep.

(03:37): Other types of sleep disorders include sleep apnea, hypersomnia, circadian rhythm disorders and parasomnia. But there are other main types of sleep disorders. These include sleep apnea or sleep-related breathing disorders where because of either mechanical changes to your airway or because of changes to how your brain is talking to your body, people stop breathing during their sleep for short periods of time.

(03:57): There's also hypersomnia, which is a physiologic drive for more sleep and it's more complex than what Hollywood depicts it to be with people just falling asleep right on the spot. But it does. Narcolepsy is a form of hypersomnia and it really is a need for excessive sleep.

(04:20): Circadian rhythm sleep wake disorders are when somebody's internal clock that tells their body when it's time to be awake and when it's time to be asleep, does not map onto our social clock of daytime and nighttime. Your body and your brain want to be asleep at times that don't really fit onto the lifestyle that we generally have and our social norm of having time awake during the day and time asleep at night.

(04:50): Then there are parasomnias. These include things like sleepwalking, sleep talking, night terrors, basically any type of behavior that is typically associated with waking, but is occurring during sleep.

(05:07): Symptoms of insomnia include difficulty falling asleep, difficulty staying asleep and/or waking up too early.  But from here on out today, I'm really going to focus on insomnia. This is where the majority of the research has focused and this is what we're going to be talking about today. So again, insomnia includes difficulty falling asleep, difficulty staying asleep, waking up too early.

These difficulties have to be bothersome and interfere with one's ability to live life they want to live it to meet diagnostic criteria for this disorder. For somebody to actually be able to say, "You have insomnia disorder", these symptoms have to occur for on average at least three nights per week or more, and it has to have lasted for three months or longer to be considered chronic insomnia disorder.

(06:01): Over the course of our lifetime, the amount of sleep we need each night changes. Now thinking about how much sleep we actually should get, if you think back to, gosh, five, maybe 10 years ago, the gospel truth out there in the world was we all need eight hours. Eight hours was the magic number, it was the silver bullet. There are mattress stores that have their commercials based around the need for eight hours of sleep, and that's not really the perspective in the field anymore.

(06:27): This is a chart from the American Academy of Sleep Medicine and it demonstrates that over the course of our lifespan, our need for sleep changes. If you have spent a considerable amount of time with infants, I think this might feel pretty obvious to you. Babies, fresh babies sleep all the time. Their bodies have a larger drive or need for sleep. Looking at infants aged four to 12 months, the recommended amount of sleep is 12 to 16 hours. And we bring that all the way over to the right side, looking at adults aged 18 plus, the recommended amount is seven or more.

(07:09):  But what you'll notice is that there's that light blue bar that shows a range. So that's not saying that seven is the perfect number for every single person, or eight is the perfect number for every single person, but rather there's a range that's considered generally healthy or recommended. For most adults, that's usually about seven to nine hours, but there are some people for whom six hours might be enough. There are some people who actually need upwards of 10 hours. So, there is a range. There's no longer really a silver bullet that's considered the perfect amount.

(07:47): Poor sleep is an “equal opportunity” symptom after transplant affecting people of all ages and gender.  When we talk about sleep disturbance or poor sleep health after transplant, a lot of the questions that people ask are things like, how common is it? When does it happen? How long does it last?

(07:59): I'm not here to paint a picture of doom and gloom, but rather to lay things out as they are. And what we know from research is that it's extremely common. It's extremely common after transplant. In particular, it's also common across cancers where transplant may not be part of a typical treatment plan.

(08:17):  And there's evidence showing that it's an equal opportunity symptom, if you will, where this is something that's experienced by people of different ages, people of different sexes, different treatments that may or may not occur in combination with stem cell transplant, different disease types that lead to transplant. It happens or it's shown to be elevated relative to people who haven't had transplants across all of these different variables. And there's also evidence showing that it can last for years after transplant.

(08:50): Insomnia tends to be worse shortly after transplant, and then improves, but may never get back to normal sleep. Now it does tend to be the worst shortly after transplant, and then improves in the maybe three to six months afterwards. But for a large portion of people, some studies have found even half of people who experienced transplant, who may have problems sleeping shortly thereafter and then improve, they might see an improvement, but they don't go all the way back to how they were before.

(09:17): And the short answer for why this happens is we don't entirely know the mechanisms as we say underlying this, the why of why this happens is not fully understood. But there are some things out there that could be contributing.

(09:31): Factors that can cause sleep disturbance include the disease, itself, psychological factors, medications, pain and long hospital stays. There's some evidence showing that the disease itself can contribute to difficulty sleeping. There are also psychological factors that come along with disease and with transplant, fear of progression, fear of adverse side effects, fear of recurrence, things like that that can get in the way of sleep. Pain is a really big thing that can interfere with sleep.

(09:56): Medications that people may be taking, that could interfere with sleep. Sometimes people are taking steroids, for example, steroids can make it more difficult to sleep. Narcotics, painkillers can impact somebody's sleep patterns and sleep abilities.

(10:17):The treatment itself has been linked to sleep disturbance particularly long hospital stays. With stem cell transplant in particular, or BMT in particular, oftentimes people have really, really long hospital stays. Well, anybody who's stayed an extended period in the hospital knows it's not the easiest environment in which to sleep. So that's also something that can really interfere. And then some of the challenges that are introduced with sleep during long-term hospital stays can continue to be impactful even after people go home.

(10:52): Poor sleep can cause a reduced quality of life, increased fatigue, worse mental health and cognitive difficulties. In terms of the impact that it has, this usually doesn't tend to surprise people. Anyone who's had a bad night's sleep knows it can make everything else feel pretty garbagy. But on the overall, and what we know from the research is that, poor sleep is related to reduced quality of life, increased fatigue, worse mental health, including worse depression and anxiety.

It's been linked with motor and endocrine symptoms like hot flashes and night sweats. It's been linked to cognitive difficulties and there's some research showing that it's been linked to mortality. I don't want to alarm anybody, but again, if we are supposed to be spending or if we are spending about a third of our lives asleep, and for an extended period sleep isn't happening, again, that would be a pretty big evolutionary mistake.

(11:42): Caregivers of cancer survivors also report sleep disturbances. One thing I always like to highlight, and I think this is something that doesn't always get a lot of attention, is that it's not just the patients who experience difficulty sleeping.

(11:52): This was a study that was done, it was not with BMT patients, this was with mixed cancers. I believe it was breast, prostate, lung, and one other cancer type, I can't recall off the top of my head. But what they did was, they looked at a couple of different ways of measuring sleep disturbance.

So you can see the PSQI. PSQI Stands for the Pittsburgh Sleep Quality Index. It's a 19 item measure. A lot of research studies use the GSDS is the Generalized Sleep Disturbance Scale. Another measure that a lot of studies used, and TST on the left picture there stands for Total Sleep Time. And what you can see is that the bars are showing you the percentage of people, who according to each one of these measures were experiencing sleep disturbance.

(12:40): Yellow is people who have had cancer, blue is their caregivers. You can see it's pretty high across the board. And on the right side when you look at different types of sleep difficulties, again, you see that it's elevated for patients and caregivers, once more pretty much across the board. A larger portion of people who themselves have had disease, tend to have difficulty sleeping. But it is happening to other people involved in the cancer or BMT experience as well.

(13:15): So now that I've painted a picture of how challenging this is or perhaps how pervasive this is, let's talk a little bit about what we can do about sleep disturbance after transplant. But before I talk about it, I want to know a little bit about some of the things that all of you who are here today have done to help you sleep. So Darryl, if you wouldn't mind bringing up the poll and we can let people answer some items.

(13:39): Audience is polled about what they do to address sleep problems. You'll see a poll with some multiple choice responses for maybe some things that you may or may not have done to help your sleep that are commonly used. And we're going to give probably maybe half a minute or so for people to answer that before we look at those results.

The answers on this poll are things that I've heard people use, things that you hear about in the media, that are just generally out there as potential tools available to people. You may or may not use any of these things. You may do something else entirely. You may instead choose to just push through it. All of these are options that are really, really common that people oftentimes choose to pursue.

(14:31): I don't know if we're able to see the results just yet or not. If so, now would be a great time. All right, it sounds like the results have been sent. Hopefully you're able to see what they look like. All right. This will provide a little bit of context for us to be able to understand what are some of the common things that people in this audience, in this community are already doing to try and improve sleep.

(15:10): The National Comprehensive Cancer Network publishes guidelines for people have had cancer, including suggestions for managing sleep disorders. I'm going to talk about some other options, actually some of which were on that poll as well. So, before I dive into those, I want to bring up this resource. Some people here may be familiar with it as well. These are the NCCN guidelines for people who've had cancer. NCCN stands for the National Comprehensive Cancer Network. This is a network of cancer centers across the United States that have worked with the National Cancer Institute and worked with this national Comprehensive Cancer Network to come up with guidelines.

(15:49): So this is a really robust collaborative group that works together to come up with suggestions for how to best approach different types of cancers. And this particular image that you're seeing on the screen is a booklet that's designed for patients and survivors and family. Providers certainly can and do look at it, but the intended audience here is actually patients and you can see a URL on the slide for how to access this resource. If you want to download the slides afterwards, you can do that and find the URL there. And I'm going to bring us to a couple of different pages that are included in here.

(16:35): This workbook has suggestions for how to cope with all kinds of different late and long-term effects of cancer. Mental health, fatigue, tons of different symptoms. There are quite a few guides in here and guide 16 focuses on sleep problems. Some of the things we're going to talk about today include sleep hygiene.

(17:00): I'm not going to go through all of these here, but we're going to go into it in a little bit more depth in a bit. I wanted to highlight that there's a section in this workbook on sleep hygiene. There's also a section in this workbook on cognitive behavioral therapy for sleep problems, and there's a section in this workbook on medications for insomnia or for sleep problems. These are only a couple of the sections that talk about treatments for sleep problems here. There are others that are in this workbook that I'm not going to touch on today, but these are the three I'm going to touch on, albeit meds will be very briefly. So I wanted to highlight those from this workbook here.

(17:39): Sleep hygiene addresses insomnia by targeting behaviors that can interfere with sleep such as use of alcohol or nicotine. Let's start by talking a little bit about sleep hygiene. This is a term a lot of you have probably heard before. I call this the Dr. Google edition of how to cope with poor sleep health or things you can do. I'm not sure how small this image is for those of you who are looking. I apologize if it's a little bit small, so I'm going to walk you through it, to hopefully help make it a little bit easier to see.

(18:04): So these are tips for better sleep. Now what I'll say for sleep hygiene, sleep hygiene is usually designed to target behaviors that could interfere with sleep. If you see on the top left, there's a picture of alcohol, there's a picture of a cigarette. This is talking about avoiding alcohol and avoiding nicotine right before bedtime. These are things that can actually make it harder to sleep.

(18:35): Alcohol can interfere with sleep. A lot of people find that it helps them to fall asleep. That's true. Alcohol has sedative properties. The catch is what happens later in the night. Alcohol can actually make it more difficult to have deep, refreshing sleep later in the night. While it does help some people fall asleep, it actually comes back to work against you later on.

(18:59): Limit screen time before you go to bed. You can see a picture of some screens. This is a thing to not watch TV or work on your computer or use gadgets right before bedtime. These devices oftentimes can amp us up and make us a little bit more activated, which makes it more difficult to fall asleep.

(19:18): A third one can be drinking a warm cup of tea with chamomile or a glass of milk before bed. This is something that many people find relaxing. It can help soothe you. Now, no one of these individual things is again going to be a perfect solution.

(19:33): Then I'm actually going to talk about sleep hygiene as an overall concept in just a minute. But I want to finish going through these. First, I just want to make sure to make it clear that these aren't be-all-end-all recommendations.

(19:46): A fourth thing there is avoiding the lights when trying to sleep. Lights tell our brain that it's time to be awake and it helps promote an alerting signal in our brain. So avoiding those lights can help make it so our brains basically don't get confusing signals telling our brain that, "Hey, it's time to wake up now."

(20:05): You can see the picture of pizza and coffee and burgers and hot dogs. Avoid eating things at dinner that are really, really heavy and are going to make it uncomfortable so you're unable to fall asleep.

(20:17): Avoid caffeine in the late afternoon. It can take people eight to 10 hours to clear caffeine from their system. So caffeine in the afternoon or evening, even if it's been quite a long time before sleep, can still impact your sleep.

(20:31): Some people find that reading a book or listening to relaxing music helps them sleep. Sleeping with a comfortable temperature in the bedroom can be helpful. Waking up at the same time and aiming to sleep about seven to eight hours. We already talked about that seven to eight hours. That's not a perfect number for everybody. I think the spirit of this is really you want to make sure you're giving yourself enough opportunity to get the sleep that your body needs. 

(20:57): Here's a recommendation to stop exercising four hours before bedtime. That four hours can be fuzzy. It's not a hard and fast rule. The catch is that exercise can increase the temperature of your body. And one of the things that tells your body that it is time to get ready for sleep is your body temperature actually starts to decrease. So if you've increased it, it's going to take longer for it to get to a point where it's queuing your body and your brain for sleep. So make sure that the exercise you're doing is early enough before bedtime, before you're trying to go to sleep, so it's not giving your body mixed signals.

(21:36): Take a warm bath or shower before bedtime. This sounds might sound like it contradicts the prior point, but having those warm cues outside your body like a shower or a bath can actually help your internal temperature get lower, which is what cues your body that it's time for sleep. These are again, some ideas. Many of you have probably encountered these before or seen some of these suggestions before. These all fall under the bucket of sleep hygiene or things that are generally sleep promoting behaviors. They get rid of the behaviors that might interfere with sleep.

(22:14): Sleep hygiene is a lot like dental hygiene. If you brush your teeth and you floss your teeth every single day, you have dramatically increased the likelihood that you're going to have healthy teeth and you've dramatically decreased the likelihood that you're going to have cavities or gum disease. You're going to decrease the likelihood that you have poor oral health.

(22:39): However, if you already have cavities, if you already have gum disease, you can brush and floss your heart's content, they're not going to go anywhere. So I think of sleep hygiene as things that set us up to have greater likelihood that we're going to have healthy sleep and greater likelihood that we're going to be able to maintain or even re-achieve healthy sleep. However, if you already have chronic poor sleep health or chronic difficulty sleeping or chronic insomnia, sleep hygiene in and of itself while important to continue, is probably not going to be enough to get you over that hump and get you back to sleeping well.

(23:24): Exposing yourself to bright light during the day may help with sleep at night. Some other ideas that could be helpful are seeking out bright light during the day. Now, I talked a couple minutes ago about avoiding lights when you're trying to sleep, because lights cues your body and cues your brain that, "Hey, it's daytime, it's time to be awake." So for the same reason that we don't want light at night, giving our body mixed signals, we do want light during the day, especially earlier in the day, to tell our bodies and brains, "Hey, it's time to be awake now", so we can have more wake during the day, helping set our body up for more sleep at night.

(24:00): Another important thing that can help is keep a consistent sleep schedule. Our brains are trainable. And if you think anybody who has kids or anybody who has pets, if we have consistency with how we request things, how we request behaviors from our kids, from our pets, over time those habits begin to form. So keeping a consistent sleep schedule can help train your brain when it's time to be awake, when it's time to be asleep. And over time people find that their brain starts to cue them to feel sleepy. They start feeling sleepy and around the same time every night and it becomes easier to wake up at the same time every day.

(24:44): Setting an alarm to wake you in the morning, and avoiding checking the time during the night can help promote better sleep. Another thing that can be really helpful for a lot of people is not looking at the clock at night. Now, for many people who wake up in the middle of the night, the very first thing that we do is we open our eyes and we look at the time. We either look at a clock if there's a clock in the bedroom or pick up a device like a phone and look at the phone to see what time it is. And then the very second thing we do after we see the time is math. And we start thinking, "Okay. I fell asleep at 11 o'clock and now it's 2 AM. So that means I've slept for three hours and I have to be up at six. So, if I fall asleep within the next 10 minutes, I'll be able to get six and a half hours of sleep and I'll be okay for tomorrow.

(25:26): And I don't know about any of you, but math doesn't tend to make me sleepy. It tends to make me feel more alert, because now I've woken myself up so much more by trying to think through all of these times. Now, best case scenario, you wake up and you see, "Okay. Oh, it's midnight, I fell asleep at 11:00. I still have tons of time to be asleep." And I feel exactly the same way I did before I looked at the time. It didn't make it worse, but I'm going to go ahead and venture a guess and say, there's pretty much no situation in which knowing the time in the middle of the night is going to make it easier to fall asleep. Best case scenario, it's neutral and it doesn't make it worse.

(26:15): So I think for some people the question is oftentimes, "Well, if it's so close to the time I have to wake up to start my day, is it even worth it to try and fall back to sleep?"

And what I argue is that, it doesn't really matter what time it is. It matters if it's before you have to wake up to start your day or after you have to wake up to start your day. So for many people setting an alarm at the time they need to wake to start their day, even if you haven't needed an alarm to wake for years because you naturally wake at the time you need to, set the alarm, not with the intention of waking you up, but with the intention of giving you an external cue that tells you, "Yep, got to get up and get going. Or nope, it's still my opportunity for sleep. I don't even need to look at the clock to know that that's the case. I can still have more opportunity." Because again, looking at the clock, it might not hurt you, but it's never going to help you.

(27:18): Sleep medication only works when taken and is not a long-term solution for insomnia. Switching gears to again, I will give a very brief introduction to some sleep aids. So sleep aids are among the most frequently prescribed psychotropic medications. However, there are a couple of things with sleep meds.

(27:42): So number one, more research is needed about them among people who've had transplant and people with a history of cancer in particular. And number two, sleep meds work every single night that you take them. However, as soon as you stop taking them, they stop working. The sleep meds work fast, but they don't work long.

(28:04): The gold standard for treating insomnia is cognitive behavioral therapy for insomnia (CBT-I). Another option, and this is the gold standard treatment, is cognitive behavioral therapy for insomnia. Some of you may have heard of this before. CBT-I is a multi-component behavioral treatment. So this means there are different pieces to it and it involves changing thoughts and changing behaviors predominantly.

(28:26): CBT-I has many components. The main things people do are change the sleep schedule, change what you do when you can't sleep at night. It involves addressing thoughts about sleep, some education about sleep. It includes that sleep hygiene we talked about a little bit ago, but not as the only thing that's done. It also includes relaxation strategies and for people who are taking sleep medications and want to stop, it can involve a discontinuation of those medications.

(28:54): CBT-I is traditionally delivered by a licensed provider through one-on-one sessions. The Society of Behavioral Sleep Medicine has a list of members, many of whom are providers themselves. There's also an international directory of CBT-I providers available. These are some great resources for how to find a sleep medicine provider.

(29:21): What does CBT-I look like? Well, the structure is similar to other types of CBT for anybody who may have engaged with CBT for something like depression or anxiety, typically it's delivered through once a week interactive sessions with a therapist or a licensed provider. Sometimes those sessions can be less frequent. Typically it involves four to eight sessions.

(29:43): There are a number of online programs or apps out there available as well for people who either don't want to talk to a therapist or don't have access to a provider or would prefer to try something independent. I will say some of these apps do have fees associated with them. That is something to keep in mind, but they are out there. The Sleepio was developed by some leading behavioral sleep experts in the research field, CBTi Coach and Insomnia Coach are from the VA as you can see on their website.

(30:18): So again, meds work faster. CBT-I is the long game. CBT-I works longer. I'm going to quickly talk about a couple of other evidence-based options for sleep. And then I'm going to switch gears in our last couple minutes and talk a little bit about something else.

(30:34): There are mindfulness-based treatments which are evidence-based options for sleep. Mindfulness really focuses on the concept of attending to the present moment. What's happening right now, right here in this very second without judgment. It has that present moment focus. There's acceptance and patience and openness. There's a focus on integrating these approaches into one's daily life. And there's a treatment out there called mindfulness-based therapy for insomnia that has some evidence both among people who have a history of cancer as well as the general population.

(31:17): Bright light therapy can help with insomnia. And then another option that is starting to get a little bit more attention. I'll tell you right now the evidence behind this is still a little bit more mixed. It hasn't been around as long as some of the other therapies, but bright light therapy is getting a little bit more attention in the behavioral sleep world. This is the treatment that's commonly used to treat seasonal affective disorder. And typically for sleep, it involves systematic exposure to bright light to help normalize circadian rhythms. So if you remember a couple slides ago I talked about trying to see light during the day and not at night. This is exactly in line with the theory behind that. People sometimes use light boxes like that green one up on the top there where it's sitting on the desk, usually about 18 inches or so away from somebody angled about 45 degrees. There are also glasses commercially available like these re-timers on the bottom. I'm not endorsing any particular device, just letting you know that these are some of the options that are out there.

(32:21): Now I am going to talk about I want to talk about fatigue, because this is something that comes up basically every time I talk about sleep, as people start asking about fatigue. Sleep and fatigue are related experiences that are not the same thing. There are lots of things that can lead somebody to feel tired. It could be related to disease, it could be related to exercise, it could be related to just having had something really cognitively demanding occur and just being really spent afterwards. There are lots of reasons that makes somebody feel tired.

(32:58): However, just because you're fatigued, doesn't mean you're sleepy. Sometimes I'll hear people use the term tired but wired, where you have no energy but you're not ready for sleep. If we think about how fatigue and insomnia in particular are related to each other, there are physiologic factors that can underlie both. Pain and anemia can contribute to insomnia and fatigue.

(33:28): There are also what we call chronobiological factors. This is related to our body's in internal rhythm that our body wants to follow every day. So when we don't have a stable or consistent pattern of when our body is awake and when our body is asleep, that can also increase our fatigue.

(33:49): We also have psychological factors like depression or anxiety related to both of these. Disease type is something that's been shown to be related to both as well. There's also effects of treatment that can impact both fatigue and insomnia. Late diagnosis and treatment has been shown to be related to elevated rates.

(34:33): Looking at some evidence behind the interrelationship among fatigue and poor sleep health or sleep disturbance, there's some theories out there that fatigue or cancer-related fatigue in particular is unaffected by rest or sleep. But the evidence behind that isn't quite as strong. It does seem like rest and sleep is related to fatigue. In fact, there have been relationships found between fatigue and insomnia and some evidence has been shown that CBT-I can improve both sleep and fatigue. So we have a behavioral treatment that's really, really targeting sleep, but we see fatigue can improve after engaging in this treatment.

(35:19): It's also been suggested that fatigue could be related to sleep fragmentation. That's having a lot of interruptions to your sleep at night. Shallow sleep, so not getting the same deep restful sleep that our bodies need, or short sleep duration. So just not having long bouts of sleep at night. It also seems that fatigue and sleep seem to have a reciprocal relationship. So one makes the other worse, makes the other worse, and similarly, as one gets better, the other can get better as well.

(35:50): Let's talk very briefly about some things we can do about fatigue. You'll notice that some of these are going to be familiar to you. So one is energy conservation. Remember, sleepiness and fatigue are not the same thing. Fatigue is really more about having a lack of energy. So maintaining a diary that helps you understand when during the day you naturally have energy, when during the day you naturally don't. Or when certain activities make you more tired and certain activities that don't. Better understanding what your fatigue looks like can be really helpful.

(36:24): Distraction can also be something impactful or there's a strategy that I've heard recently called Napuccino. The theory behind this is that, the caffeine takes usually about 20-30 minutes before it actually starts impacting you physiologically. If you can drink a small coffee and then immediately fall asleep, during that time that the caffeine is working its way through your system, you can get that sleep and then by the time you wake up, the caffeine kicks in and is keeping you awake. So I always think this is a very clever strategy. Some people find it effective and I like to put it out there because not everybody's aware of it.

(37:08): We also do have pharmacologic interventions for fatigue. There's some evidence, but again, it is limited and this is something that for anything it's important to talk to your physician about it.

(37:22): Then interestingly, one of the strongest evidence bases for strategies that can improve fatigue is physical activity. So there are a variety of different types of physical activity that have shown to be effective against fatigue. I know that can sound counter intuitive, but this is what we know from the research.

(37:43): And just two more. Cognitive behavioral therapy, either CBT-I specifically or CBT more generally has also been shown to be related to improvements in fatigue. Lastly, there's some evidence as well that bright light can help with fatigue and a lot of this evidence actually specifically comes from the cancer context.

(38:05): I know that was a very quick drive-by of fatigue. I'm happy to answer more questions about it or speak more about it if of interest. But in the interest of time, and to make sure we have enough time for questions, I want to quickly acknowledge two people who helped put these slides together for me. Dr. Lisa Wu, who's at Reykjavik University in Iceland and Dr. Alexandria Muench at University of Pennsylvania. And with that, I thank you so much for listening and I'm happy to take questions.

Question and Answer Session

(38:37): [Andrea Feldmar]:   Okay, I'm going to jump in and ask you the first question. How do you keep sleep when prednisone is the cause?

(38:48): [Dr. Rina Fox]:   Prednisone is one of those meds I talked about a little bit earlier that can interfere with sleep. There are some things that I think are going to continue interrupting sleep and making it challenging. However, some of these strategies, even if they don't stop prednisone from waking you up or for making it hard to fall asleep, they can make it so it's a little bit easier. So a lot of these strategies, like some of the things you might learn in CBT-I, like keeping a consistent sleep schedule, again, it can help your body and your brain learn when it's time to be awake, when it's time to be asleep. And that can help even in the context of something external that might be interfering with your sleep, that can help make it so maybe it doesn't take quite as long to fall asleep.

(39:53): [Andrea Feldmar]:   Great. Thank you very much. Here's an interesting question. How to sleep when there's incontinence that causes two to three wake ups per night?

(40:07): [Dr. Rina Fox]:   So again, I think this is another one, and this is one of the reasons why I think it's really important, and I probably didn't say this as strongly as I could have or should have, but it is really important to work with all of your providers to figure out if there's something external to sleep. Like incontinence, for example, or something adjunctive to sleep that's interfering with the ability to sleep, that's something to talk to your urologist or other provider about to see if that can be helped.

There are some things related to sleep that actually can cause our body to produce more urine. For example, sleep-related breathing disorders. We know that people who have sleep apnea actually produce more urine at night. Getting the sleep-related breathing under control can lead to less urine production, which can lead to fewer nighttime awakenings, when we have fewer nighttime awakenings with the apneas.

(41:06): This can be a hand-in-hand type of situation. The other thing that I'll say is a lot of times people will wake up for something other than needing to use the restroom. It might be an external. Something external wakes them a sound, something about the environment, whatever it may be. And when we wake up, after that alertness occurs, we go, "Oh, I have to use the restroom." It may not actually be the need to void that is causing the awakening. Sometimes using these strategies or working with a provider to change your behaviors related to sleep and change your thoughts related to sleep in a way that makes it so sleep can occur more continuously, can actually also make it so you're having fewer incontinence related awakenings in a somewhat indirect way that it can still be impactful. Because if you're not waking up, then you don't realize that the urge to urinate is there.

(42:15): [Andrea Feldmar]:   Great, thank you. Can you please address whether using CBD products with or without THC is recommended for sleep?

(42:25): [Dr. Rina Fox]:   That's an excellent and really, really timely question. There is some evidence for CBD in the context of sleep and in the context of really a variety of concerns. This is something that we in the scientific community and we on society are learning more and more and more about. For a long time it was really hard to do this research, but we are starting to learn more and more about it. The research is still happening. So there is some evidence that some people who use CBD are sleeping better. That doesn't mean that it's going to work for every person, but there are reports that people do experience and benefit from it. Now what I'll say is that, there are limited CBD products that are currently FDA approved. So that's something that can be wise to attend to, just to have a better sense of what actually is in the product, because things that are not FDA approved are not regulated at the same level. So it's hard to really know what exactly is being delivered.

(43:45):Whereas with something FDA approved, that is a little bit more well understood and it's more regulated. Before using any product including CBD, that's something that is important to consult your doctor about. With regard to THC, that gets a little dicey just because the laws around it are so variable from state to state at this point. I think that gets a little bit more dicey and that's also been harder to research than CBD. So there's even less known about it right now. But again, it's something, there are instances of people finding it to be helpful for their sleep. There's not as much known about it and there are some products that are FDA approved but many that are not.

(44:33): [Andrea Feldmar]:   Okay. Thank you. How about any herbal supplements?

(44:40): [Dr. Rina Fox]:   So herbal supplements are another tricky category because it's unregulated. The supplement industry at large, all vitamins, all supplements really are not FDA regulated. So again, it's hard to know if you're actually receiving what it is that's in the bottle that you're purchasing, that you're taking. Melatonin is a great example of this. There have been a couple of studies done where researchers have gone out and bought a bunch of different types of melatonin and then actually tested the materials themselves to see how much melatonin is really in here. And the amounts vary wildly. It's upwards of like 400% of a difference between what's advertised on the bottle and what's actually found in the compound when it's analyzed in an independent lab. In terms of herbal supplements, there are some that many people find beneficial. However, again, it's unregulated so it gets a little bit dicey.

(45:52): Melatonin is the one that people ask about most frequently. And melatonin is really interesting because a lot of people take it and frankly it's advertised to be taken as if it's a sleep aid. Like the way you would take an ambient, for example, where I'm getting into bed, let me take my melatonin and it's going to put me to sleep. And many people do find that melatonin has somewhat of a sedating effect. For the most part, the research out there shows that melatonin tends to be pretty benign. It doesn't tend to have a lot of adverse effects. I will say melatonin is a hormone. For people who are experiencing hormone related changes or maybe perhaps not here, but for people who have hormone related cancers, for example, that's something that I encourage people to keep in mind. But with the melatonin, it's not really designed to put people to sleep on the spot. It's really much more designed for our circadian rhythms.

(46:58): So the human brain naturally releases melatonin, usually about two hours before our bedtime, before your circadian rhythm is telling your body that it's time to be asleep and it's time to go to bed. And that release of melatonin, one of the things it does is it turns off our body's drive to be awake. So it doesn't necessarily make us sleepy, it doesn't promote sleepiness. Rather it allows sleepiness be felt more profoundly because it turns off our alerting signal, our drive for wakefulness. So when people take melatonin, oftentimes what's recommended as a therapeutic use would-and then this is not medical advice for anybody per se, but what's often encouraged is to take it a couple hours before bedtime and people when they're using it for that type of usage will take much smaller doses. Therapeutic doses are usually anywhere from half a milligram to maybe three milligrams. Whereas I see a lot of people use 10 milligrams or 20 milligrams at bedtime to fall asleep, and that's not really how melatonin is intended.

(48:13): So again, some people find it has a sedating effect, but a lot of people find that it's not really helpful for them and that's oftentimes because it's being used in a way that's not really in line with how it functions. So I think I took that question and went a little bit off the rails into my own territory with it, but hopefully it was still answered.

(48:34): [Andrea Feldmar]:   Always appreciate the information. Here's another one. Can reading on an iPad be counterproductive?

(48:42): [Dr. Rina Fox]:   Great question. So, yes and no. The concern with a lot of devices is, there are two concerns. One is the blue light. So a lot of our devices emit blue light. They are really close to our faces, much more so than even a television per se. And that blue light, what it does is, it stops our brain from naturally releasing melatonin. So again, it turns off that melatonin. And if you remember, the melatonin turns off our desire to be awake. If you're turning off the melatonin, that desire to be awake continues and continues to be strong. In that way, it can make it harder to go to sleep. Now a lot of people or a lot of devices do have built-in strategies to get around that.

(49:39): iOS devices for example, have night shift where you can have the setting turned on that as you get closer to bedtime, the blue light that comes out of the device is decreased and the red light that comes out of the device is increased. Red light is generally believed to be non-circadian activating. Basically what that means is it doesn't have the same impact on your melatonin release as blue light or white light. Blue light and white light are the strongest colors of light to make it so the melatonin is not released the way it typically would be. So in terms of the light exposure, it depends on how you're using the device. And if that white light is really coming out, it can interfere. The other thing that it can do is for a lot of us who are on our devices all day every day, it's how we do our work.

(50:33): It's how we get our news, it's how we use social media. It might be how we join Survivorship Symposium, for example. And we're using these devices for things where we are actively engaged and actively thinking and actively awake. Again, our brains are trainable and our brains start to learn, "Oh my iPad. That's the thing I use when I'm supposed to be thinking. That's the thing I use when I'm supposed to be alert." So just the process of holding that device can have an alerting effect if that is how we use it.

Now for somebody who has a device where it is in a mode where there's less light being emitted from it, the light being emitted, it is more in the red spectrum. They only use it for reading shortly before bed and it doesn't have any other associations with it, sure. There are circumstances in which it may not be counterproductive. But there are circumstances in which it might make it harder for somebody to fall asleep. So that's something that everybody can attend to themselves in terms of the impact they're finding it has on their own sleep.

(51:42): [Andrea Feldmar]:   Great, thank you. And what's the difference between sleeping at night versus sleeping enough hours but doing it during the day?

(51:54): [Dr. Rina Fox]:   Excellent question. I'd say for most people the difference is really how do you feel and how does it fit with your life? So for people who for whatever reason, either their lives don't allow them to sleep at night or they're unable to sleep at night, but they get more sleep during the day, that's certainly better than not sleeping at all. And there are plenty of societies in our world that have this biphasic or bimodal sleep episodes where you have multiple shorter sleep episodes rather than one long continuous sleep episode. If that works, there are reasons to believe that that's fine. However, the challenge comes in for people where that doesn't fit their lifestyle. So either there are daytime commitments that make it difficult for them to nap during the day, or other challenges that make it so that daytime sleep isn't really as functional. There's also some more recent evidence emerging showing that exposure to light during sleep can have adverse cardio metabolic effects.

(53:15): So it's related to things like worse insulin regulation. If even though you're sleeping and your eyes are closed, you're exposed to environmental light and it's much harder to block out environmental light during daytime hours than it is during nighttime hours. So I think the evidence in this space is still emerging. Getting enough hours spread out across day and night is certainly better than not getting enough hours only at night. I think whether or not that's something that works for you and whether or not that's something that is impacting other aspects of your health, really varies from person to person.

(53:54): [Andrea Feldmar]:   Okay, thank you. Here's a question. Can acupuncture help with sleep?

(54:02): [Dr. Rina Fox]:   Excellent question. I will preface it by saying this is not my area of expertise. There is some evidence supporting it from what I understand, and usually acupuncture is a pretty benign option, so it doesn't have a ton of adverse effects associated with it from the literature. From what I understand, the mechanisms behind the effects of acupuncture for sleep disturbance are not fully understood. So that's really the case for sleep disturbance in general in this context, but there is some evidence showing that acupuncture can be helpful.

(54:48): [Andrea Feldmar]:   All right, great. Thank you. Here's another question that I think is probably common to many people. I fall asleep easily, but wake up every two hours after that. Is there anything I can do to stay asleep?

(55:03): [Dr. Rina Fox]:   That's a great question and that's an extremely common experience. In the world of insomnia, people talk about different types of insomnia. There's sleep onset insomnia, which is where somebody can't fall asleep at the start of the night. Then there's what's called sleep maintenance insomnia, which is, "Yeah, I have no problem falling asleep, but exactly this. I can't stay asleep. I wake repeatedly throughout the course of the night." In terms of things that can help, CBT-I is the gold standard for both sleep onset and sleep maintenance insomnia. Those strategies are built into CBT-I, and can be delivered by a trained provider or perhaps through a digital intervention. One thing I didn't say, and I am kicking myself because I should have built this into my slides and I'm so sorry I didn't. But it is also oftentimes really important and can be really helpful to get a sleep study to make sure that there's not something else going on.

(56:08): A lot of times sleep apnea is one of the most underdiagnosed disorders really out there. It's much more common than people realize, and a lot of people, they don't know what it looks like. And especially if somebody sleeps alone, there's no way to know if you're having episodes where you stop breathing during the night. Oftentimes having a sleep test done to make sure there's nothing else going on can be helpful. That's something to talk to your provider about.

(56:42): [Andrea Feldmar]:   Excellent. Thank you. And our last question, how much REM and deep sleep should a person get a night?

(56:52): [Dr. Rina Fox]:   Excellent question. This is something that actually naturally changes over the course of the lifespan. Most of the shallower sleep occurs earlier in the night and deep sleep and REM sleep tend to occur a little bit later in the night with REM mostly occurring in the early morning hours. We do see as people age, that they start to have a little bit more of that shallower sleep throughout the course of the night. I think that's something we see changing over the course of the lifespan, just like we see the need for quantity of sleep change over the course of the lifespan.

(57:45): [Andrea Feldmar]:   Okay. Well, I thank you very much. On behalf of BMT InfoNet and our partners, I'd like to thank Dr. Fox for the excellent presentation. I'd also like to thank the audience for all of these excellent questions, and please contact BMT InfoNet if we can help you in any way.

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