Managing Sleep Problems after Transplant
August 5, 2020 Part of the Virtual Celebrating a Second Chance at Life Survivorship Symposium 2020
Presenter: Eric Zhou PhD, Faculty, Division of Sleep Medicine; Attending Psychologist, Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute and Boston Children's Hospital
Presentation is 32 minutes with 21 minutes of Q&A.
Summary: Insomnia is a common problem after a stem cell transplant. Physicians are often unaware that patients are having diffculty sleeping. Traditional treatments, such as medications, can have side effects and are often ineffective long-term.
- A study looking at advanced stage cancer patients reported that individuals who slept at least 85% of the night had a significant increase in their survival time.
- The primary treatment for sleep issues after transplant is cognitive behavioral therapy for insomnia.
- When looking for a sleep therapist, it is important to find someone who has been specifically trained in cognitive behavioral therapy (CBT) for insomnia.
02:41 Insomnia, is a very common problem after transplant and can disrupt daily life.
04:40 Insomnia can cause or exacerbate cardiovascular disease, diabetes, obesity, and mental health issues.
10:13 Medications often prescribed for sleep disorder, such as hypnotics, are associated with an increased risk of mortality.
13:19 The American College of Physicians recommends trying cognitive behavioral therapy for insomnia (CBTI) before other medications or treatments.
14:54 Cognitive behavioral therapy (CBT) involves sleep restriction, stimulus control, sleep hygiene, cognitive therapy, and relaxation training.
18:58 The first and most significant element of sleep treatment is sleep restriction to make you feel sleepy.
22:29 The second element of sleep treatment is stimulus control, which is using you bed only for sleep.
26:06 The third element of sleep treatment is sleep hygiene - behaviors you can change to help fall asleep and or stay asleep.
28:21 The cognitive therapy part of CBT for insomnia is addressing the negative thoughts people have about sleep.
31:24 The Society of Behavioral Sleep Medicine at behavioralsleep.org has a provider list, by state to help you find a sleep specialist.
00:00 [Moderator] Welcome to the workshop, Managing Sleep Problems After Transplant. My name is Mary Clare Bietila and I will be your moderator today. It is my pleasure to introduce you to today's speaker, Dr. Eric Zhou.
Dr. Zhou is on the faculty in the Division of Sleep Medicine at Harvard Medical School, and is an attending psychologist at Dana-Farber Cancer Institute and The Boston Children's Hospital. Dr. Zhou's research focuses on how we can better understand and treat physical and psychological disorders commonly experienced following transplant. He has presented his work on sleep disorders at international conferences and has published peer reviewed articles extensively in the field of health psychology and behavioral medicine. Please join me in welcoming Dr. Zhou.
00:58 [Dr. Zhou] Hi, good afternoon everybody. It's an absolute privilege to be able to be here and have the opportunity to talk to you guys about sleep problems after transplant. Now, as the introduction mentioned, I happen to be on staff at the Dana-Farber here in Boston, and during the opportunities in the past that I've had to speak with the BMT Infonet Group it has come up repeatedly that across the country people who have gone through transplant really are finding themselves struggling with sleep. So I'm glad that we're having the opportunity to talk today.
Now, sleep is an absolutely integral part of everyday life. It's something that by the end of our lives we will have spent approximately a third of our time doing. And we have to make the assumption that if we're spending a third of our time doing this, that it should be something that we are doing as best as we possibly can.
Many Types of Sleep Disorders
01:56 Now, I want to bring up this slide, not because there's going to be a test at the end of the presentation but because I want to drive home the complexity of sleep. We often think about sleep as something that we just say, "Oh, we have bad sleep. I don't like how I sleep." But there are just an incredible and dizzying array of different sleep disorders that one might experience. This is all to say your sleep issue or your dissatisfaction with sleep may be very different than what a friend or a colleague or another family member sleep issues are just to be clear.
Insomnia Disorder After Transplant
02:41 Now, one thing that I want to spend the majority of our conversation about today is something called insomnia disorder. And the reason that I want to spend this time is because it is one of the most common disorders in the general American population, as well as in the BMT patient population. Many of us think of insomnia as something that we likely wouldn't be qualifying for because it sounds like a real sleep disorder. The reason I have the diagnostic criteria up for your review is to make the point that actually the threshold to be diagnosed is quite low. By that I mean somebody has to be reporting difficulty with staying asleep or falling asleep at least three nights a week for a period of three months, and this has to cause some disruption in the rest of your day.
And if we stop and think about that, that's really not a big bar to cross. And so not surprisingly actually what we see is that about one in every three American adults report some symptoms of insomnia disorder which would really mean that the odds are somebody you know struggles with insomnia.
Now unfortunately, insomnia is something that I have to point out is very much trivialized in the popular media, even in our conversations. We all chuckle about how we don't get sleep. But I'm hopefully going to convince you why, in a moment, that this is about as embarrassingly bad as naming a cookie store BMT Cookies. You would never go to that store. You would think that the owners are absolutely crazy for naming their store this. And that's how I want you to view insomnia, that it really leads to significant health consequences if you're not managing it the right way.
Physical Effects of Sleep Disorders after Transplant
04:40 Now, there's a lot of good data to show that there are physical health effects if you struggle with falling asleep, staying asleep or feeling good about your sleep, whether it be causing or exacerbating cardiovascular disease, diabetes, obesity, mental health issues like increasing rates of depression, anxiety disorders, even things such as suicide attempts.
We know that this gets worse if somebody struggles with insomnia. And if you happen to be reading in the media, these are the kinds of articles that you might come across. And you think, "Well, this can't be right." America's sleep crisis is making us sick, fat, and stupid. That just sounds like an article where the author was writing a headline to try to convince you of something that really can't possibly be true.
So if you take a step back and think about those claims, these are the 10 leading causes of death in the United States as of 2016. And if you look at study after study after study, be it in young adults, older adults, adolescents, middle aged, we see that not getting enough sleep, getting poor quality sleep is associated with incredibly vast, and this is certainly not an exhaustive list, but an incredibly vast array of health effects. And in fact, if you go back to that list that I have provided of the top 10 causes of death, there is evidence that if you are getting poor quality sleep or not enough sleep, that of those 10, almost every one of them can be something that gets worse if you do sleep poorly or don't get enough sleep.
Cancer and Sleep Issues
06:50 And if we're talking about cancers, for example, this happens to be the professional world I work in, we actually specifically see that there's really fascinating data.
A study that was done in Stanford. What they did was they used an actigraph which is a wrist-based medical device that measures sleep. They strapped these on a group of women with advanced stage breast cancer, and what they saw was over the period of a 100 month follow-up, so a little under 10 years, the blue curve are people whose sleep efficiency is above a cut off that we traditionally consider good sleep efficiency of 85%. For those of you not familiar with what sleep efficiency is, it's a ratio. It's the amount of time you spend asleep divided by the time you spend in bed.
Now, we all know that when we go to bed we don't fall asleep instantaneously and we may wake up in the middle of the night. If you spend 85% or more of your night sleeping, that's generally considered to be reasonable. However, below that you tend to start being worried about your sleep because it means that you are in bed either not falling asleep or staying asleep.
Sleep and Survival Rates in Cancer Patients
08:11 So as I said, the blue curve at the top shows the survival of these women who had good sleep efficiency. The red shows the curve of women who had bad sleep efficiency. And they looked at all the other things that we should think about when doing a study like this like how sick were they, did they have other medical issues, did they have mental health issues. And even after looking at all of that their conclusion was that an improvement in sleep efficiency by 10% among women who were poor sleepers could potentially lead to a 32% increase in survival time. That's just amazing to me to think about. That's how much sleep matters.
Now, this is an issue that you may be experiencing, and if you are like most patients, your primary care has no idea. Now, your primary care, I'm raising this is because he or she is somebody that you should be seeing at least once a year and they're likely to be the most regular consistent part of your medical care. In this case, there was a study done in Germany, but the findings are reflective of the United States. What they did was they assessed patients before they went into the doctor's office and they saw how bad their insomnia was. And then they looked at the medical records after the visit to see if the primary care was aware that they had a sleep problem. And what's amazing to me is 61% of patients with severe sleep problems, their primary care had no idea, because it was not discussed. So it would not surprise me if your primary care didn't ask you about your sleep, nor did he or she know about your sleep.
Treatment Options for Sleep Issues after Transplant
10:13 Now, you're thinking, if we're at the doctor's office next, what are we to do, what can they offer me? And you might be right in thinking that we lead to one of two paths, the first of which, let's get prescribed a medication or be told to take something over-the-counter. The second is something called cognitive behavioral therapy. Let's see what this options might look like.
Prescription and Over the Counter Sleep Aids
10:39 Now in reality what we know is that in the United States about one in every five adults have actually taken something for their sleep over the past month, be it prescription medication or something that they bought at their local pharmacy over-the-counter. That's a lot of people. But there are concerns about prescription medications. There's a considerable amount of data looking at anxiolytic medications and hypnotic medications. Hypnotics are often the ones that are prescribed, are things like Zolpidem or Ambien or Lunesta. And they actually are associated with increased risk of mortality. And we see this in study after study.
Melatonin Supplements to Aid Sleep After Transplant
11:36 Now, you might think, "Okay. Well, what about something over-the-counter like melatonin? That's supposed to be natural and it's supposed to be safe." Well, there certainly is a time and a place for melatonin, but it's important to be mindful that when researchers have pulled a number of melatonin samples off the shelf at a pharmacy, what they found was that melatonin content in these bottles varied between samples and lots. That means they pulled different bottles, and between the bottles the content was different regardless of what the label said, and this was different between different brands, how they were taken in terms of whether they were chewable, whether it's something you swallow for example. And even within the same brand they noticed variability. And in fact, the variability was so big that they noted that it was almost 500% greater than what the label said, down to about 80% less than what the label said.
Also, it's important, I must highlight is that serotonin was found in over 20% of the samples. And serotonin should be there not surprisingly because it's actually a precursor chemically to melatonin. Of course, ingesting serotonin is not something that you will want to casually be doing without having your healthcare providers be aware of this. A lot of this has to do with the fact that in the United States over-the-counter purchases such as this are not regulated by the FDA.
Cognitive Behavioral Therapy (CBT) For Insomnia After Transplant
13:19 So when you think, "Okay. It's not a prescribed medication. It's not an over-the-counter medication. What do we do?" Well, the American College of Physicians in 2016 made a statement on this. They said their number one recommendation is that all adult patients are going to receive cognitive behavioral therapy for insomnia as the initial treatment for insomnia. Mind you, they didn't say with the second treatment, not after melatonin fails, not if somebody is in a good mood. It's the number one treatment that should be initiated first for a patient with insomnia.
Now, if you're thinking what is cognitive behavioral therapy for insomnia, I want to rid you of the preconceived notion that it might be something where you lay on a couch, somebody's asking you how do you feel today, what is your relationship like with your wife, how are you and your mother doing. Now, they may be elements of different forms of cognitive behavioral therapy, maybe for depression, anxiety disorders, but for insomnia it's very different. It's a completely different set of tools that you get taught when it comes to CBT for insomnia.
Components of Cognitive Behavioral Therapy (CBT) for Sleep Disorders
14:54 Now, regardless of where you're finding the information, there are five key components that are consistent across all definitions, which I want to focus on. That is sleep restriction, stimulus control, sleep hygiene, cognitive therapy and relaxation training. These pieces tend to form the core of CBT insomnia regardless of who you're talking to.
How Many Hours Should a Person Sleep Each Night
15:28 Now, I want you to think for a moment if we take a step back about how many hours that you might end up sleeping per night. As you think about that, as a sense of what your averages might be, because I know it will vary from day to day, week to week, know that actually in the United States we're struggling with a significant epidemic of insufficient sleep. So the proportion of Americans sleeping six or fewer hours is reaching astronomical proportions. Now, that isn't to say that there aren't people out there who actually need less than seven hours of sleep. They exist, but they are uncommon compared to people who might need six and a half, seven, seven and a half, eight, eight and a half hours. Those tend to be more common among most adults.
Now, when it comes to what CBTI or CBT for insomnia is, the change is actually from worrying about how much you slept on any given night into the future. The message has to be it's not about tonight, and I'm going to explain.
Tracking Your Sleep
16:49 So what do you do? First and foremost is we need to collect some data on sleep, and I discourage you from using wearables like Fitbit or your Apple watch to track your sleep. Currently there are no devices that are consumer wearable, these things you can buy at a Target or on Amazon, that have been truly validated to tell you when you are or are not sleeping.
This isn't to say that in 10 years, or probably at the pace of technology in a couple of years, these devices aren't actually going to be even better than what we have today. It's to say that now, in 2020, they are not yet trustworthy for you to be able to determine sleep-wake. The way you can do that with the device that you put on your wrist was using an actigraph that I mentioned earlier in the study of breast cancer patients, but those tend to be quite expensive, hundreds of dollars each, and they require some training in order to be able to understand the data. So, something that you may do with a sleep provider, but certainly typically not something you do by yourself.
So, if you ask me, "Well, how do I collect this information?" What I use in clinic is something called the sleep diary, whether it's a visual sleep diary that you see at the top where you shade in when you sleep, mark when you wake up, or simply writing down those variables in a table like you see below. This very non-technologically focused approach is very, very effective at keeping the information you need because we're not worried about you estimating on any one given night. What we're looking for are your trends and averages over time. I typically ask patients to complete these diaries for one to two weeks before they return, and then we discuss.
Sleep Restriction to Feel Sleepy
18:58 Now, the first and most significant element of sleep treatment is called sleep restriction. This centers around the focus of helping people feel sleepy. Now, I have here a number of different medications Ambien, Klonopin, Ativan commonly used by people to help them feel sleepy. The reason it's important that we don't actually go with a medication is because once you remove a medication, well, your problem is there still. The goal is for you to understand that you can actually naturally increase your level of sleepiness. And I want to differentiate something for folks.
Sleepiness is not tiredness. Tired is how you might feel if you're in the middle of summer, you have to go outside and mow the lawn, it's 100 degrees and incredibly humid. You come inside it's 2 P.M. and you want to grab a cold Pepsi. That's tired. You don't feel like doing anything else the rest of the day, but you're not pressured to sleep. You don't feel like you have to go to bed right then and there. That's not what sleepy is. Sleepy is the feeling of having not slept and the urge to sleep overwhelms you. That's the feeling that you'll get from sleep restriction, because what you'll see is this feeling that people experience.
And I bring this up because it's a common one, that people have had in their past where you might have to wake up at four, three o'clock in the morning to get to the airport for an early morning flight, and you fall asleep in the middle of an airport or on a plane with complete strangers sitting around you. That urge to sleep is ideally what you want. And we achieve this by limiting the amount of time that somebody is able to stay in their bed because we're matching something here. What we're matching is the average sleep that this person got on their sleep diaries to the amount of time that they spend in bed.
Often, I'll have a patient who's in bed for say 10 hours but they only average seven hours of sleep, so they might spend three hours a night tossing and turning in total. If we only let them spend seven hours in bed, what ends up happening is they start at the beginning not falling asleep right away, still waking up in the middle of the night, but because they have to wake up and get out of bed seven hours later they haven't gotten a lot of sleep that night. And so the next night they feel sleepier and the next night they feel sleepier until eventually they pass out in their bed.
Stimulus Control to Create an Environment for Sleep
22:29 The second element of what we do is called stimulus control which is only using the bed for sleep. Now, you might be thinking I'm talking about not using your phone in bed or reading in bed which is true. The reason that we don't want you to be in bed doing other activities is because you are conditioning yourself not to sleep in bed. If you think about it, if we are talking about something completely unrelated like say training a dog to use the bathroom outside, well, the dogs don't understand that you're supposed to go to the bathroom by the tree in the yard. To them the bed post looks really quite appealing as well. But by repeatedly associating a tree with where they go to the bathroom is where they then learn, okay, I'm by a tree, I should go to the bathroom.
Well, we do the same thing in bed. We subconsciously start to associate our bed as being a place for being on the phone, reading a book, and actually to me what is more important is laying there like this gentleman, trying desperately to fall asleep, making sure the world around us is perfectly quiet, we have to lay on a certain way with the temperature set to a perfect temperature. That's called sleep effort.
Now, what you probably found is that the harder you try to fall asleep or to stay asleep, the less likely you are to succeed. That counterproductive, paradoxical event ends up teaching your body to fight to sleep in bed which makes you less likely to fall asleep and stay asleep. In fact, this is where I typically offer my audience a chance to win a whole lot of money. I'm sorry that I won't be able to offer this to you in person, but I'm sure that BMT InfoNet will be happy to provide you with all the money that I am offering if you can succeed, which is I will hand you $100 if you can fall asleep within the next five minutes. And in fact, this could be a party game that you try on your friends to prove the point.
The reality is I know that none of you will be able to consciously fall asleep by snapping your fingers or clicking your heels. That's just not how sleep works. We sleep if we have not slept for long enough, meaning we have built up an appetite for sleep, and it's the right time of day like usually in the late afternoon or in the evening. If those two don't align, we simply cannot sleep. We can't push a button and sleep. If we could, well, in summary I wouldn't do this, and I would have lost a lot of money making this bet. However, it's no different whether you're trying to fall asleep at 1 pm or trying to fall asleep at 1 am. You cannot control the event simply by wishing and willing to happen.
Sleep Hygiene for Falling Asleep and Staying Asleep
26:06 Third is sleep hygiene. These are things that you've likely read about online when you searched for I can't sleep, what do I do? These are all things that might make a difference in terms of your ability to fall asleep and stay asleep, but in and of itself they're likely not going to eliminate your insomnia. These are all things that are good to do though, like getting rid of a bedroom clock, being active in the late afternoon or early evening, doing your best to avoid caffeine and stimulants like nicotine within 6-8 hours before bed.
Alcohol is one thing that is sometimes confusing and positive in that it actually helps people fall asleep. It causes you to become drowsy. It's a depressant. But for many of you who have drank too much what ends up happening is that you end up waking up in the middle of the night more often or in the morning feeling not as refreshed. And that's in part due to the fact that alcohol messes with your natural sleep cycle. It's certainly not an advised solution.
For those of you finding yourself hungry in the middle of the night and like a bedtime snack might help, consider reducing liquid consumption before bed if you go to the bathroom in the middle of the night, and of course consider the reduction of electronics use to the best of your ability. This is not only something where the light causes your body to not start producing melatonin naturally, but it alerts you and also importantly many electronics are designed to be endlessly entertaining which means it's difficult for one to fall asleep because you can't help but click next episode please.
Cognitive Therapy for Insomnia: Calming Negative Thought and Setting Expectations
28:21 The cognitive therapy part of CBT for insomnia is addressing some of the maladapted, the poor, the problematic cognitions or thoughts that people have about sleep. Some of these might be ones you experience like somebody who thinks, "Well, if I don't sleep well tonight, I don't know how I'm going to be able to function tomorrow. This has to stop. My cold, my disease, my this is going to come back if I don't sleep well. It's what my doctor said." Or, "I'm never ever going to be able to fall asleep because I have just so much to worry about right now."
Now, there might be elements of truth to all of these statements. We know that if you don't sleep well that your cognitive performance tomorrow is worse. But challenging these thoughts through evidence is an important part of the treatment because, well, for many of my patients, they've struggled with insomnia for years and even decades, and they've managed to maintain their jobs. It's important that people see that there is often very little evidence that these statements are true even though these statements make their sleep worse, because it adds so much pressure to the event.
Another element of this is setting appropriate expectations for how long somebody should be sleeping. What we see is that there's a wide range of how much sleep could be reasonable for adults. For example, in the older adult population, many older patients of mine are surprised to see that between five and nine hours is actually potentially their sleep need. They don't need necessarily eight hours like they might have traditionally thought or in the past have gotten.
Influences on Sleep
30:21 Also, it's an important reminder that sleep occurs in the context of a lot of events in life, and one thing that I'd like to remind people when I see them in clinic is that if you go into the dictionary and you flip to any page that word you point to is possibly going to affect your sleep that night. Literally that is how complicated sleep is and how susceptible it is to be influenced by things like medical illness, arguments with a spouse, raising a child, hot weather, work stress, even excitement from your favorite team winning the Super Bowl. These are all things that influence your sleep that are not a sleep disorder, and it's important to take a step back and to assess how much of what you're experiencing is due to transient events versus this is a pattern regardless of the season or the time.
Finding a Sleep Specialist
31:24 Now, if you're looking for a provider, this is a heat map of where behavioral sleep medicine experts live in the United States. The redder it is, the more there are providers. This means unfortunately that there are parts of the country that are not well covered. The Society of Behavioral Sleep Medicine at behavioralsleep.org has a provider listed by state so that you can take a look to see if you can find somebody suitable for you.
Book Recommendations about Sleep Disorders
32:03 Alternatively, there are ways that you can read about all of this work. The first two books are excellent books in describing what to do for yourself. The third book, Overcoming Insomnia is for providers. However, it gives you a behind the scenes look at exactly why and how you do what you do. There's also an app called CBTI Coach and it's quite good at walking you through what you need to do and what we've discussed.
32:37 [Dr. Zhou] I do appreciate the opportunity that you've given me to come and talk with you guys about your sleep and will be happy and delighted to answer any questions that you might have regarding sleep to be able to help you.
32:57 [Moderator] Thank you Dr Zhou. That was an excellent presentation. We're now going to take questions. As a reminder, if you have a question, please type it into the chat box on the left side of your screen.
Our first question is from Michaela. How can I find a CBT insomnia specialist near me? So, I know you showed the heat map of kind of what's out there. So, is finding a CBT specialist a different procedure? How would someone go about that?
33:29 [Dr. Zhou] It is. As I had alluded to earlier, it's important that you not find somebody who offers traditional psychotherapy or cognitive behavioral therapy. They must be somebody who has done the work for insomnia specifically. I have had historically a number of cases in which patients tell me that they've done this work with another person who's only been interested in a paycheck, and it makes me very frustrated for them. If they do not have any training or experience in providing this treatment, make sure that you find somebody who can.
The website that I provided on slide 34, which is going to behavioralsleep.org, that's not an exhaustive list but it's a starting point of providers in different states around the country. If you find one within your state but they're not close enough to you, I would encourage you to reach out to them first to see if they offer telemedicine, especially during COVID. We have had relaxation of regulations that allow psychologists to see patients in different states via telemedicine. So maybe they're able to see you via telemedicine as an option, or they may know somebody in your city or town.
35:14 [Moderator] Great, that's really helpful. Our next question is from Justin. I have difficulty with sleep initiation. I become agitated and this makes it difficult to relax without taking a benzodiazepine or other z-drug. I also draw ... Excuse me. I also struggle with sleep eating in order to get back to sleep. What medical or drug options are there to help with this problem with sleep initiation?
35:45 [Dr. Zhou] The initiation difficulty you described is very much a pattern that our patients get trapped in. Think about this like test anxiety or interview anxiety. Imagine that before a big job interview, your dream job, you feel anxious which is normal, but let's just say that you feel so anxious that you do the interview and you totally blow it. It's terrible because the entire time you're worried about your performance. Well, that just confirmed your anxiety which means the next time you have an interview you're going to be even more anxious which makes you even more likely to flub the interview, which is a lot like what sleep initiation sounds like.
You struck out, trying to successfully fall asleep, and so it's an event that now 30 minutes, 60 minutes, 90 minutes before you even go to bed, you're already dreading the thought of going to bed without a drug to help you fall asleep. And of course, by doing that, you make the event much more difficult. Sleep restriction is a key element of this. In order to show you that you can become very naturally sleepy without the aid of any drug, that's the experience in the first couple of weeks of treatment.
Also, something that is not insomnia that is very common, especially among younger patients is delayed sleep phase. This has to do with your body's natural tendency to want to fall asleep later in the day, like say if you're a teen. If you think about high school, when you were in high school, you likely when you were 17, 18 felt more inclined to fall asleep at midnight rather than say seven o'clock P.M. For some people that's even later. They naturally don't want to fall asleep until 1, 2, 3 A.M., but they're still going to bed at 9, 10, 11 because they feel like that's what the rest of the world does. So they don't necessarily have sleep initiation issues. They're just timing their sleep wrong. That's potentially another thing.
The sleep eating question you posed. If it's something that's occurring consciously, that's a different sleep disorder than if it's occurring in the middle of the night without your awareness. There is such thing as sleep-related eating disorders. If you're conscious while you're doing this and it's become a conditioned event, it's a trained response. You've learned that you eat in order to help you fall asleep. That's something that has to be untrained unless this is something you wish to do into the future.
39:03 [Moderator] Okay, that's really helpful. Our next question is from Laurel. For pain do you think Tylenol PM is good to take?
39:14 [Dr. Zhou] So that's a different question. If pain is the reason why you are taking the Tylenol, it's certainly a perfect conversation to have with your primary care. If you're also saying I take the medication because it has the side benefit of helping me feel drowsy, that's a different question. I would ask yourself, if you did not have any sleep issues, would you still take the Tylenol? And if the answer is yes, then that's certainly reasonable and that of course with your primary care's permission you should do it. But if the answer is no, if you did not have sleep issues, you would not take this Tylenol PM, then I would be very cautious about long-term use in order to help you feel drowsy enough to fall asleep.
40:15 [Moderator] Okay. Our next question is from Barbara. Why do you think sleep issues are so prevalent for BMT patients?
40:26 [Dr. Zhou] There's something that's called a precipitating event. The way we think about insomnia is that it is often triggered. Now, for some people, they just develop it because they're predisposed to it. But for many there are events that occur in life that cause you to sleep poorly and something that persists. Think about it like a reason why something breaks. Maybe your A/C breaks because it's so hot outside and it's been running non-stop for a month. That's the precipitating event, meaning if it didn't get hot for a month straight, the A/C would be fine. But with sleep it's like that too.
So for example, women are more likely to have insomnia than men because in part they tend to be the predominant caregiver of children. And so because they have kids who cause you to sleep terribly for a number of months if not years, what happens is the sleep is broken and until they repair it, it remains broken. So that's why for BMT patients they often struggle, is because they have so many insults to their system if you will, medical, psychological because of the stress, trying to be isolated after your transplant from your routine, your world where you might just end up spending a lot of time in bed, these are all reasons why somebody's sleep initially might get broken, and like I had said, unless you get good help to treat the root of the disorder, the insomnia often persists.
42:19 [Moderator] That makes a lot of sense. I'm recalling back to when I was in the hospital for my first transplant and when they said, "Oh, well, you're doing really well. We don't have to do your vitals check at midnight." It was like this ray of sunshine that I was able to sleep a little bit more. So yes, we definitely go through very disrupted sleep that we have no control over. All right.
42:46 [Dr. Zhou] Absolutely.
42:47 [Moderator] Yeah, yes. Our next question is from Georgine. They asked, I have been diagnosed with obstructive sleep apnea and have to use a CPAP machine. I'm not overweight. Is it a possible side effect of my allogeneic stem cell transplant?
43:05 [Dr. Zhou] Now as a side effect, it means or suggests to me that it's a direct cause and effect relationship. I'm not aware of data to suggest that getting stem cell transplant is associated with increased rates of apnea. What you do mention though is interesting, is that you say you're not overweight. And in fact, there are plenty of very, very non-overweight individuals who struggle with apnea. It is not simply a sleep disorder of the obese. Some of this just simply has to do with your body physiology. It's how you're built. So unfortunately you may be having to use your CPAP even though you might not look like the other patients who you see at a sleep apnea clinic. It is good to hear though that it was diagnosed and that you are treating it with CPAP. It's a wildly effective treatment for apnea and it's an important one to preserve your health.
44:22 [Moderator] Okay. Another follow-up question about sleep studies. Home sleep studies are becoming more prevalent. You don't have to go inpatient for the study to take place. What do you think about that? Is there still the same amount of data that can be collected? Is it still as quality a sleep study at home versus inpatient?
44:45 [Dr. Zhou] You get very different data on a home-based sleep study. Because there aren't as many wires connected to you, you're not actually measuring all of the things that a hospital-based study would assess. However, if the reason why you are being assessed is whether or not you have breathing issues like apnea, home-based studies are quite good at diagnosing that. If there are other concerns, then this would be up to the sleep physician you work with. If they're worried about say a nocturnal seizure, of course you wouldn't be able to diagnose that with a home-based study because there are no leads strapped to your head. However, a good sleep physician would not send you with a home study if those were their concerns.
So this is a case where you want to make sure you're open in your discussion about your symptoms and concerns with the person and let their judgment be the guy for whether a home-based study is adequate for you.
45:56 [Moderator] Okay. And a question about napping. Many, many folks who are going through cancer treatment, especially stem cell transplant, experience fatigue, and napping becomes a habit, and can be I think helpful at different points in time. But how do you break out of that so that you can create sleep restriction so that you can then sleep in the evenings when you're supposed to?
46:22 [Dr. Zhou] Well, you don't necessarily have to do anything. It's about what feels good for you. If you love your nap in the afternoon and you're comfortable with how you sleep at night and you wake up and you feel refreshed during the day, you have nothing to worry about. If however you say that you take a two-hour nap in the afternoon and that means you can't fall asleep until 1 A.M. and you hate that and you wake up in the middle of the night multiple times, well, then it's a matter of having to find ways to stay awake in the afternoon as best you can and only allowing yourself to be in bed during a set number of hours over the course of the evening.
47:05 [Moderator] Okay. That's really helpful. Okay. Our next question is from Robert. I changed taking vitamin B from morning to evening and I'm getting much better sleep. Do you have any further advice regarding the timing of certain drugs and how they relate to sleep?
47:24 [Dr. Zhou] There is very limited evidence about things such as what you're describing. As you can imagine there just simply is not a good massive pharmaceutical industry willing to support vitamin B research. It doesn't mean that what you're experiencing isn't reality, but when it comes to medications, and I don't mean over-the-counter, I mean prescribed, it's always good practice to talk to the prescriber to ask about whether different timing may impact your sleep if it's a struggle. For some of this, you may be one of the few patients in which you should be taking a drug at a different time than others but that involves experimentation. And that's a case where it's important again to follow up with the prescriber to make sure they're aware.
48:17 [Moderator] Okay. That's great. Michael asks: My sleep issue is usually related to my brain racing and not necessarily about any real world event. I can break the train of thought by listening to music and giving my brain something else to do, and I'll fall back asleep fairly quickly. Are there other ways I can break this train of racing thoughts or not begin them at all?
48:48 [Dr. Zhou] If you can fall asleep within 15 minutes after waking up and this is occurring one or two times in the night, I wouldn't worry. If this is something that takes you much longer than 15 minutes, if it's occurring multiple times a night or if you find that having to put on this music is disruptive, well, that comes back to sleep restriction Michael. If I don't let you sleep for four straight nights and I keep you up every single day, I guarantee you on day five your brain is not racing anywhere but to bed. And that becomes what sleep restriction looks like. You will see, regardless of how much your brain races, sleep debt that you owe your body is an absolute beast when it comes to putting you to sleep and keeping you asleep.
49:37 [Moderator] Excellent. The next question is really about the different phases of life and the amount of sleep that is necessary. Charles knows someone who's in their 70s and sleeps about three to four hours a night and they're concerned. Should they be concerned?
49:54 [Dr. Zhou] They should talk to a sleep physician. I find that I have many times heard people say that they sleep three to four hours a night but what they're not accounting for is they wake up and then an hour or two later they fall back to sleep for another hour or two or they might take a three hour nap every two days in the afternoon. So in total they may be receiving sufficient sleep, but because we tend to over exaggerate things the more we talk to people, that three hours is quite low. It's unlikely. However, if that truly is their experience, they should absolutely be meeting with somebody.
50:37 [Moderator] And what are kind of the ... I think their kind of follow-up question here is what are the consequences if you're just not getting the amount of sleep that is necessary? Like what are the signs that your body will tell you that something is really wrong?
50:55 [Dr. Zhou] You don't need to have those red flags. That's like saying I need to make sure that I have a heart attack before I see that I need to treat cardiovascular disease. You should not wait until your body is screaming that there is a sign. If somebody is telling you or if you are believing that you don't get enough sleep because you wake up and you don't feel good ever, if you wake up and you feel like you just want to go back to sleep, and again, this is not depression because that might be depression, then you should absolutely seek treatment. This is the case where I would err on the side of being told by somebody, "Nah, you're fine," rather than waiting until you've had this heart attack before you go and see a cardiologist.
51:52 [Moderator] That makes so much sense. Absolutely. Right, we're going to wrap up here. We've got one last question from G, and they ask: I can go to sleep but I wake up in about an hour and then can't get back to sleep. What is the best strategy to help?
52:10 [Dr. Zhou] Well, if you're falling asleep for only an hour, I suspect you're falling asleep at the wrong time. If you're not able to fall back to sleep and it's hours, it's likely that what you're doing is you're having your dessert before dinner, meaning a lot of people end up on the couch falling asleep from 8 till 8:30 or 8 till 9, rush up to bed and can't fall asleep again until 12 midnight. They just spoiled their appetite for sleep by sleeping on the couch, meaning they're not going to fall back to sleep once they go up to bed, and they've now trained their body not to sleep in bed for multiple hours a night.
The key here is about making sure that you avoid that phase in which you feel sleepy and make sure that you wait until you time it so that you get one consolidated block of sleep as best you can, because that tends to feel much more refreshing than getting your sleep here, waking up, again waking up there.
53:21 [Moderator] Excellent. That makes so much sense. I feel like I have the context I always needed after hearing your presentation and these questions. We are running out of time so on behalf of BMT Infonet and our partners I would like to thank Dr. Zhou for his very helpful remarks and thank you, the audience, for these excellent questions.
This article is in these categories: