Managing Sleep Challenges after Transplant

Learn the most effective treatment to help you fall and stay asleep.

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Managing Sleep Challenges after Transplant

Monday, April 19, 2021

Presenter: Eric Zhou PhD, Dana-Farber Cancer Institute, Harvard School of Medicine

Presentation is 28 minutes long with 21 minutes of Q & A.

Summary:  Difficulty falling asleep and/or staying asleep is common among transplant recipients. The usual solutions recommended – sleep hygiene, medication – are less effective than cognitive behavioral therapy for insomnia. Learn what defines a good night’s sleep and how to get it.


  • Good sleep is not just about the number of hours we sleep, but about the quality of our sleep.
  • Insomnia is one of the most common sleep disorders reported by transplant recipients. Despite its prevalence, it is frequently underreported and not routinely assessed by doctors.
  • Medication simply masks a sleep problem – it does not address the underlying cause of poor sleep.

Key Points:

(02:13) There is great variability among individuals as to how much sleep each person needs.

(07:28) In one study of cancer patients, even minor improvements in sleep made significant improvements in survival rates.

(14:12) Roughly 20% of people take prescription or over-the-counter sleep medications in a given  month. Long-term use of some of these medications may cause cognitive problems.

(15:50) Over-the counter sleep medications are not regulated and actual content can be quite different from what’s on the label. 

(16:56) Medication does not cure insomnia. It simply masks the problem.

(17:46) The American College of Physicians and the European Sleep Society recommend cognitive behavioral therapy for insomnia (CBT-I) as the first line therapy for insomnia.

(18:12) Cognitive-behavioral therapy for insomnia (CBT-I) is the most promising intervention and it can help more quickly than people think. CBT-I is a different tool kit than CBT to treat other disorders.

(20:57) CBT-I first carefully tracks sleep data and patterns in order to help patients understand their sleep, before beginning treatment.

(21:59) Restricting the amount and time you sleep can improve quality of sleep.

(26.51) CBT-I providers can be found on the Society for Behavioral Medicine web site. There is also an online program called Somryst, that is available by prescription.

Transcript of Presentation:

(00:01) [Mary Clare Bietila]            Introduction. Good afternoon. My Mary Clare Bietila and I will be your moderator today. Welcome to the workshop Managing Sleep Challenges after Transplant. It is my pleasure to introduce you to Dr. Eric Zhou. Dr. Zhou is on the faculty in the Division of Sleep Medicine at Harvard Medical School. He is also an attending psychologist at Dana-Farber Cancer Institute and the Boston Children Hospital. Dr. Zhou's research focuses on how we can better understand and treat physical and psychological disorders commonly experienced following cancer treatment including sleep disorders. Please join me in welcoming Dr. Zhou.

(00:45) [Eric Zhou]      Overview of talk.  Thank you so much for the kind introduction, Mary Clare. It is an absolute pleasure and delight to be here, chatting with everyone today. I am so glad to see that there are over a 100 people joining us which is wonderful to see. Now, as Mary Claire had suggested, we would be able to chat a lot about sleep today and I'm hopeful that I'll be able to race through to this presentation as quickly as possible so that you guys can ask all the good questions that you might have regarding sleep after transplant.

(01:14) Now, this is clearly something that I think I'll be preaching the choir since you're here. But sleep is something that is fundamentally important. In fact, if we actually think about how much we do it, we end up probably sleeping about a third of our lives, which is an incredible amount of time to be doing something. And so we would imagine that we actually want to be doing this particularly well.

(01:40) Often times, I get folks who come to me and say, "You know what? I'm worried because I'm not sleeping eight hours or seven hours per night" and this is something that we read about in the news a lot. We see that people who sleep seven to eight hours seem, statistically, to be doing better than others consistently with regards to the different health outcomes. The reason why I think that this is something that's important is because we actually know that that number, seven to eight is not necessarily true.

(02:13) There is great variability in how much sleep any particular individual needs. This is something that's important to start off with, when thinking about this as a group. So this is National Sleep Foundation who have recommended, and it may be appropriate, to ration your sleep. So if you think about yourself, let's just say you are a 60-year-old individual. Seven to eight is absolutely within the dark blue bar which is the recommended duration. But, what we also know is that there's a great deal of variability when it comes to how much sleep individuals need. I connect it to, say, how tall people are. Just because you're a man and you are not somewhere between 5' 9'' and 5' 11'' doesn't mean that something's wrong with you. You can be 6' 8'', you could be 5' 1''. It just means that you are not exactly of average height.

(02:59) In this case, being a 60-year-old who needs six hours of sleep could be completely reasonable so long as that feels good. And that's an important piece to start off with as a baseline because as I said, many folks worry about not getting enough sleep, when the reality is they may not need seven or eight.

(03:18) What constitutes good sleep? Now, we think about what good sleep is. What constitutes good sleep? I mentioned the first thing, which is the quantity element. This is, however, just one of multiple pieces that constitute good sleep. So not only do we want somebody to be getting enough sleep... And it's important that I say the word enough and I did not say you get more sleep. You don't want more sleep. You want enough sleep. That's the quantity piece.

(03:45) Continuity of sleep is important as well. Next is the continuity piece. Are you staying asleep after you have already fallen asleep?

(03:53) Timing of sleep is also important; we should sleep at the same time every day. And then finally is the timing piece. This one links to the circadian element which means our body has this internal clock called the circadian clock and the timing piece, for it to feel good it, it means that your sleep should be occurring at around the same time every day. You should be typically sleeping for the same amount of time, at the same time of day, because variability in things like when you sleep will actually lead you perhaps not to feel as good.

(04:23) And if we add all three of them, you do all three of those right then, typically, people believe that they are sleeping well and are happy.

(04:33) Now, what does it mean if we don't sleep well and aren't happy with our sleep? Well this is just a boring slide that you'll see in other talks. Well these are the consequences that people think about. And you look at this and it's just a bunch of words on paper.

(04:48) So what I want to do is actually drive home this point by thinking about what you might have actually have read. So when we go to the popular press, we see headlines like this all the time. America's Sleep Crisis is Making Us Sick, Fat, and Stupid. And typically, when I see these headlines, I think to myself this is just Reader's Digest or whoever's way of getting you to click the article so they can sell you another advertisement so they can pay their bills. Well, [inaudible 00:05:17].

(05:19) Most of the ten leading causes of death are influenced by sleep. Well, if we look a little deeper at this, this right here, the 10 leading causes of death for adults in the United States is the regular things that you would expect. And we could dive into a whole lot of detail, and I can show you paper after paper after paper, but these are an example of the set of papers which realistically demonstrate that all of those 10 things that I said are the leading causes of death, that a good proportion of them are likely to be influenced by your sleep. And it's not just quantity but the other things as well. You're not doing sleep right. That poor sleep may spread the process or exacerbate the process which causes some of these issues to become worse.

(06:12) Now, the one that I want to highlight on is cancer-related, because as many of you know, the reason why a transplant has occurred was because of some sort of a cancer. And in this case, they have studied this in transplant patients, but what they have done is study this is in women with advanced stage breast cancer.

(06:31) What they did was, they gave a group of women with advanced stage disease something called as ActiGraph. It's kind of like your Fitbit or your Apple watch where it tracks your sleep but this is a medical grade device. And what they do is, they group these women into two categories. One, were they able to follow asleep and stay asleep? Two, were they struggling with that? And the way that they marked that was with a number called their sleep efficiency. That, in other words, is calculated by how much time to spend asleep divided by how much time you spend in bed. Higher is better, of course. You need to go to bed, fall asleep, and stay asleep. Then they followed these women for over a 100 months and these two curves here are described as survival curves. The higher you are on the Y or the vertical axis, the more likely you are to survive.

 (07:28) For cancer patients in one study, even minor improvements in sleep made significant improvements in survival rates. In this case, what you see, is that woman in the blue or the woman who had a high sleep efficiency, so they were able to fall asleep and stay asleep better than the woman in red, and, as you can also tell from the graph, they were more likely to live longer. The punchline from that data suggests that just improving your sleep efficiency by 10% in a woman with a poor sleep efficiency, so that's those in the red line, could potentially lead to 32% increase in survival which is just a monumental difference in how you are after your cancer diagnosis.

(8:09) Now, I've talked a lot about sort of these general terms so far. This is the International Classification of Sleep Disorders which is truly a book that you would want to read if you ever can't sleep. It is incredibly dull and I don't encourage anyone to read this. But what I want to point out here is poor sleep is not as simple as "I'm just a bad sleeper." There are a host of different sleep disorders, and you can have more than one, that influence how you sleep. And so this is another challenge that people often present to see me in clinic which is that they think they're just a bad sleeper, and they're really sure what that means, but there are different ways that we can capture this and of course, treat it.

(08:55) Insomnia is one of the most common sleep disorders after transplant. The one I want to focus our attention on is insomnia and this is because insomnia is one of the, if not the most, common sleep disorder for patients post-transplant. Or adults in general in this country. It really is a public health epidemic in our country. The reason I have the criteria for diagnosis up on your screen right now is not because you need to memorize it, but because I want to point out how low that threshold bar is for somebody to sleep poorly. You read at the top. You just have to hate sleep for three nights a week or more for three months or more. That's it. You've got to have a couple of other things going on as well, as you can see by the rest of the list. That's more the diagnostic things. But in terms of the duration, it really is not that long.

(09:52) Insomnia symptoms are common but it is underreported by people. Now, insomnia symptoms are really common. We estimate that about one in every three American adults, within the past couple of months, have experienced insomnia symptoms. They may not have a full blown disorder but they've definitely struggled with their sleep. Despite how common it is, and hopefully as I've demonstrated it to you a couple of slides ago, how meaningful consistently bad sleep is for your health, we actually make fun of this idea that you might have insomnia. This is actually wonderful cookie company they have in the Northeast. I'm not sure it sells around the country, but they make pretty gosh darn good cookies here in the Boston area. But then, to me, it's thinking about, well if something is actually as potentially as deadly as insomnia is... it probably wouldn't go over to well at a conference for BMT survivors. That's how little people [inaudible 00:10:46] something meaningful and worrisome.

(10:50) Now that's something we see evidenced in clinics. This states for adults who present to their physicians, of the top 10 reasons why somebody goes to see their doctor, sleep is not among that list. And, as a result, your doctors don't know.

(11:13) Doctors rarely ask patients about sleep issuesl. So this is a study in Germany where what they did was they actually assessed whether or not a patient had insomnia before he or she saw their doctor. They didn't tell the doctor, and then after their visit, checked up with the doctor to see, "Hey. Did your patient have any insomnia?" And what you see here is, among patients with severe insomnia, 61% of them... So in 61% of the cases in this study, their primary care had no idea.

(11:41) When was the last time your primary care asked you, how is your sleep? So 61% have never been asked about sleep. Even though I said earlier, you spend a third of your life doing this activity, you would think that this is something that's important. I would suggest a good timeline is at least every year, just like your annual physical. Just to check in on how things are going.

(12:07) About a fifth of you have been prescribed something for sleep. And about a quarter of you, more than that, have tried to go to your local CVS and take something off--the-shelf to try yourself out. About fifth of you have tried some relaxation exercises and over a quarter of you have tried sleep hygiene. And I'm going to leave option D which is cognitive behavioral therapy to the end. I'm going to talk about that in a second but if you can see that, that's 4% of this group. And I'll tell you why that's just absolutely terrible. But that means you've got stuff that can do.

(12:47) “Sleep hygiene” tips are not as effective as people may think. Now, in terms of those answers that's pretty consistent with what we're actually seeing in the community. The first is, really, sleep hygiene. This is what you tend to get recommended when you go to doctor Google and you say, "Well, I can't sleep. Tell me what to do." These are all the things that you genuinely think about as being helpful for sleep. Like, don't drink coffee before bed. But what I find is in my clinic, by the time they end up seeing me, no one's drinking coffee before they go to sleep because they've already checked off all these things. That's actually why the evidence suggests... I'll let you read what these two researchers concluded. So they did a review of all of the literature that was published on sleep hygiene and insomnia. And what their conclusions are... I'll read you the highlighted line. The wide popularity of Sleep Hygiene recommendations by sleep specialists appears to be out of proportion to the available data demonstrating the efficacy of this approach. Just a very kind of saying it sucks which, not surprising, because we see that a lot.

(13:58) You try to do all the things that Doctor Google has told you and it has not cured your insomnia. So as a monotherapy, meaning as it's only treatment, it is quite likely to be ineffective for your insomnia. It's not a surprise and don't fret.

(14:12) Roughly 20% of people take prescription or over-the-counter sleep medications in a given  month. The next thing that people talked about, I think that about a fifth of you have been prescribed medications which is actually exactly what the data suggests. That within the past month, in the United States, about one in five Americans have taken something for their sleep. Whether it's something that their doctors told them to take up at the pharmacy or that they bought off the shelf.

(14:37) Now, with regards to the prescription medications, we know that there are limitations to this data, but there is some noise, there's some rumblings that long-term use of medications typically used for sleep may not be the most fantastic choice for you. There are a range of concerns.

(14:57) One study has linked long-term use of Benadryl to cognitive problems. Primarily, the ones that are most worrisome are the cognitive ones. There seems to be pretty good evidence that long-term use of some of these medications may affect cognitive function. In fact, couple of years ago, there's an interesting paper that was published about anticholinergic medications and dementia risk. And in this case, the anticholinergic, which is actually the active ingredient in Benadryl which often used for sleep, is what they are talking about. And their conclusion is that, if you've taken something like Benadryl for about three years or more, you are at much higher risk of dementia than having some limited history of taking that medication. So just food for thought. Again, this isn't a direct cause and effect relationship. This really hasn't done those trials but it just suggests that if we can... This is probably not and should not be your first line treatment.

Another one that's common, is melatonin. I almost see this as being known as vitamin M nowadays because you are being advertised to take this for health purposes. It's almost like take your full supplements, multiple vitamins as well as melatonin tablets. And unfortunately, currently, it's not FDA... I apologize if this is small on your screen. But a group of researchers did, they just went to the pharmacy, pulled a bunch of melatonin off the shelf and just tested what was in it.

(16:17) Now what they found was, well, when stuff isn't regulated, people will do whatever. So there's not a lot of quality control. You got bottles which had a lot more melatonin than what you expected to be getting, and a lot less. And, in fact, of eight out of 30 samples, serotonin was found in the actual sample itself which is actually expected because serotonin is a precursor chemically, to melatonin. So, not to say that it can't be used in certain situations but we typically don't use or recommend it in the case of insomnia and we have these concerns about the purity of the product.

(16:56) Medication doesn’t cure insomnia.  It masks the underlying problem.  But my biggest issue about any of these prescribed over the counter products is actually related to the fact that it doesn't cure the insomnia. So if you, say, take an Ambien® or a lorazepam and you take this every day for your sleep and it does a great job of making you sleepy and you fall asleep, well that's wonderful. But then what happens if you are post-pandemic, traveling to Aruba on vacation and, oh my goodness, you left your medication in the medicine cabinet. What are you going to do? The insomnia returns and then would typically return with some vigor. Some rebound insomnia, if you will. So that's to me, the bigger worry, is that it actually does not address the real problem.

(17:46) Cognitive behavioral therapy for insomnia should be the first-line treatment for insomnia. Now we actually published, just about three months ago, a set of guidelines from the American Academy of Sleep Medicine. That this is something that both the American College of Physicians, European Sleep Society, that people all over the world will say, "well what we should do is actually... It's not lined up right there but at the bottom, it says we recommend cognitive behavioral therapy for insomnia as the first line treatment".

(18:12) Cognitive-behavioral therapy for insomnia is different than cognitive behavioral therapy for other disorder . Now, when you hear CBT-I - CBT for insomnia - you may hear that and you think, "Oh. What is this thing?" And a couple of notions I want to offer. First and foremost, no one's going to sit there and ask you whether or not you had a great relationship with your mother. They're not going to ask you whether or not you have a happy marriage. Though these things may in some way play a role in why you sleep the way you do today, we're talking about the focus of CBT for insomnia, not to be confused with CBT for other disorders like depression or anxiety. Same three letters, CBT, uses the same ideas of cognitive and behavioral strategies but for insomnia, it's a different tool kit.

(18:58) In particular, for this tool kit, I'll give you a sense of what the actual ingredients are. Now, the standard approach used in research trials are six to eight sessions over a six month period. What you'll typically find in my clinic is that I'll see patients for about four sessions over a two to two and a half months period.

(19:17) CBT can be effective more quickly than people think. So this is really, really, stunningly fast. And this is different for patients who struggled with sleep for decades. And so in this case, people tend to think of their sleep as something that requires months, if not years to fix and in this case, I want to dispel that myth.

(19:35) CBT has a few key ingredients. What the ingredients are: sleep restriction which is simply the idea of matching time in bed to total sleep duration. Stimulus control, using bed only for sleep. Sleep hygiene which is what talked about earlier, doing behaviors that help you with sleep and avoiding behaviors that don't. Therapy that is addressing some of the maladaptive thoughts that people have with regards to sleep foundations and then relaxation exercises.

(20:01) Changing our mindset can improve sleep in the long term. Now, the overarching goal of what we do in CBT-I is to shift the focus for patients from worrying about how they sleep that night and how they feel tomorrow, into how is this behavior, how is what I'm doing right now is going to impact my sleep in two weeks and two months. It's about essentially not choosing to do what feels good today, because you know that that decision will [not] lead to better sleep in the future. I tell people, it's more like every day feels really good to eat junk food, chocolate cake, potato chips, French fries, whatever, but do that long enough and it'll lead to long term bad consequences. However, if you eat healthy, it leads to longer term better consequences. And that's what I want you to about with sleep. Its changing your mindset to how does this change my sleep in the future?

(20:57) Tracking your sleep data and patterns is necessary for treatment. The first thing that we do is collect data. And typically people think "What about my Fitbit? What about my Apple watch?" These devices are devices that currently don't have the data to suggest that we really, really can trust it all the time. Some of the older models, there have been studies that showed that it works and in this case, it's a good question whether or not in the future they're going to be better than those ActiGraph I mentioned. Probably will be but for now, what we actually use are these very simplistic sleep diaries. You can Google sleep diaries anywhere you go. It's a simple idea. At the top there's visual representation where you shade it when you sleep. With text-based representation of when you sleep down below and that simply tracks how you sleep over the course of a couple of weeks to get a sense of the ebbs and the flows of your sleep. Once we have an understanding of what the patterns of your sleep are, we start treatment.

(21:59) Sleep restriction improves quality of sleep. First step in treatment is something called sleep restriction, as I mentioned. These are some common sleep meds. So Ambien®, Klonopin®, or Ativan® and they're designed to make you feel really, really sleepy so that you pass out, right?

(22:12) I'm actually going to argue that the best drug you can take is actually not sleeping. So if you think about this idea, you know how you might feel if you go and catch an early 6:30 am flight and you had to wake up at 2:30 to be able to finish packing and catch that Uber to the airport. Well, you see all these people around you who are somehow managing to be able to fall asleep and stay asleep in a place which is brightly lit, loud, and there's all these strangers which is absurd. But in this case, they are able to do this because they are sleep deprived. So what we actually do is, we limit the amount of time that people spend in bed so that they are consistently deprived of sleep for short term. So then their body resets and they're able to better fall asleep and stay asleep.

(23:06) Stimulus control is the next step. The second thing is stimulus control. Just using the bed only for sleep. Now people think about it as I don't want to be on my phone in bed, don't want to be reading in bed which absolutely the case.

(23:17) Staying in bed when you can't fall asleep only makes the problem worse. But what I find people to be more guilty of is sleep effort. They lay in bed and they try really, really, really hard to sleep. And that only makes it worse. The harder you try, the worse you sleep which makes you try harder and that slope is a slippery one.

(23:39) Sleep hygiene has a role in CB-I. Sleep hygiene. These are all things that, as I said before, you've probably thought of which is just things like rid of the bedroom clock, being physically active, minimizing substances that impact sleep, eating a light bedtime snack, try to avoid as much of liquid as possible right before bed, and reducing the amount of electronics used at the best of your ability.

(24:00) The cognitive component of CBT-I involves managing worries that keep up awake at night. The cognitive piece relates to all of those dark thoughts that people have when they're not able to sleep like people say, "If I don't sleep, how am I going to show up to work tomorrow?" Or, "If this doesn't stop, my disease, whatever, it might be, is going to come back because I hear all the time about the connection between sleep and health." Or, "I just have so much to worry about, this is one more thing. I'm never going to be able to fall asleep." And we work on actually addressing these particular thoughts which, as you can imagine, I mean now in the afternoon or in the morning wherever you might be, you're probably not having these thoughts but at night or in the hours even leading up to night, I bet you're thinking about them and that only adds pressure.

(24:43) Another thing as to remind people that sleep is a very, very sensitive event. I think about it almost like scenario in the coal mine for health. So, for example, if you're feeling guilt, you may not sleep right. But there's also a million other things that we don't think about, like if you got into a fight with your spouse, if you have young children, if it's really hot or cold outside and your heating system broke, if you're really stressed out at work, if your favorite football team is playing in the Super Bowl tomorrow. These are all things, good or bad, that influence sleep, that are not a sleep disorder, that people often mistake for being sleep-related. And in this case, it's about setting that expectation right. And then I'm going to skip to the relaxation piece because you all know what relaxation exercises are. For the one in five of you who've tried the Headspace with a calm app, that's exactly it.

(25:38) Now, these five things, these five ingredients that I talked about... It's about as easy to implement as... Well, if you want to lose some weight. Trying to start a healthy lifestyle. It's really hard to do consistently, actually. And to do it in a way that you feel confident. And because people typically start for a couple of days with something like sleep restriction and then struggle to maintain that because they're not really sure they get why they're doing it. And so that's why it's so important. If you're not that kind of a person who can make these changes individually, actually try to find somebody to help you.

(26:13) Searching for CBT-I providers on the internet. Now this is a heat map where the darker the color, the more clinical providers there in the United States for this kind of work. So as you can see, they tend to be congregated in major metropolitan centers. Now, with telemedicine, you may be able to access some of these providers in your state better, but for those of you who look on this map happen to be living in North Dakota or Montana, that may be a bit of a challenge for you. There's some things that we could talk about there. But for those of you who may be interested, you can go on the Society of Behavioral Sleep Medicine website to see if there's a provider near you. Remember, CBT for insomnia.

(26:51) An online CBT-I program is available to patients by prescription.  And if you're the kind of person who can do this work by yourself, you can go on Amazon and google cognitive behavioral therapy for insomnia. Most of the books are going to tell you the same thing, it depends on your writing style and the price of the book I suppose. As you see in this slide, now those five ingredients really aren't rocket science. So it's about executing them that's actually the hard part.

(27:15) And there is now a prescription online therapeutic called Somryst®, that you'll have to have a doctor prescribe for you to be able to complete. But it's an online version of these programs. With that being said, I appreciate the chance to challenge everybody about your sleep today. I hope I have left a good amount of time to be able to answer questions that you might have and if there are ones that comes up after our presentation, please don't hesitate. You're welcome to reach out to me via email and I'll be delighted to answer any questions that you might have separately. So thank you again for your time. Looking forward to your questions.

Question & Answer Session

(27:53) [Mary Clare Bietila]     Thank you, Dr. Zhou for this excellent presentation. We're going to now take questions. As a reminder, if you have question please type it into the chat box in the lower left hand corner of your screen.

(28:04) Our first question is, would you please address using CBD products without THC for sleep?

(28:13) [Eric Zhou]       Yeah, it's a hot topic right now actually. We just published a paper, just a couple of days ago asking about... Or talking about the use of medical cannabis. Now with the specific question about CBD, in the context of cancer and sleep. So there is not great research, unfortunately, on this relationship between cannabis and its by-products with sleep. So with that being said, typically we don't find consistent sleep-related or sleep enhancing properties for CBD products whereas we do with some THC strains.

(28:56) What is good to know, however, is there is a very significant placebo effect that medications... I'm not talking about things like an over-the-counter product or a cannabis product, I'm talking about things like Ambien. We actually see about 60-some odd percent of why you fall asleep on Ambien. It's not the drug, it's not the pharmacology. It's that you believe you are ingesting something that helps you sleep. So by doing it, you feel more relaxed because you know you're going to get sleep that night and, of course, you sleep better.

(29:32) It reduces your arousal level. In this case, if your physicians aren't concerned about the use of CBD and you've talked to them about this, that there's no potential for affecting your health and it works for you, then certainly you're welcome to. What is important though, is being mindful, again, of one of the slides I had showed earlier which is if you have to take substance X every night to sleep, that doesn't resolve the root of the problem. It doesn't cure the disorder. It manages the symptom. And so if you're using a product that you can't take on the plane or you can't take while you're out of the country when you're on vacation, or whatnot, it is something to think about at least, in order to try and manage it from the cognitive behavioral vantage point.

(30:22) [Mary Clare Bietila]  Okay. What are your thoughts on anti-depressants that cause sedation for sleep?

(30:30) [Eric Zhou]      Yeah, so this was an excellent question that absolutely should be talked about with your prescribing team. So anti-depressants that are often used for sleep are often used because it has a nice side effect especially if you are taking it because you have mood issues as well. So Trazodone is a common one. And what we find in the data is that these kind of sedating anti-depressants tend to work better with sleep maintenance issues. So if you have trouble staying asleep, they tend to be ones that are used rather than difficulty with falling asleep. And so, again, great conversation to have with your prescriber. But at the same time, just as that first question, if you're only taking Trazodone for sleep remember, again, that you are masking that symptom. In the short term, absolutely. If you have something major coming up in a couple of days, or you just had surgery or something happened, taking medication is completely reasonable. But it's about having an exit strategy in one month, six months, however long, so that you know that you can still build the tool to be able to sleep without that medication in the long term.

(31:49) [Mary Clare Bietila]   Okay. The next question is, is it okay to take naps for 30 to 60 minutes every day?

(31:56) [Eric Zhou]    Is it okay to eat chocolate cake every day? I mean, maybe. For some people, who are good sleepers, you can absolutely nap and it feels glorious and then they have no problems falling asleep and staying asleep at night and they feel great in the morning. If you, however, struggle to fall asleep or stay asleep, the nap may be part of the problem. You have to think about it like your appetite, right? Let's just say that dinner's at 6 o'clock but at 4 o'clock today you had a really big slice of chocolate cake. You're going to lose some of your appetite for dinner.

(32:34) And so, in this case, if you take an hour nap and let's just say you only need six hours of sleep every night, well there goes an hour of that. And you may not need six hours. You may only need five and a half, five and a quarter that night. If you go to bed earlier or stay in bed longer, well, that screws up your sleep. So it's about how it affects you and how it makes you feel otherwise. So there's not a right answer to whether or not napping is good or bad.

(33:00) [Mary Clare Bietila]   Okay. So we've got two questions that talk about listening to either a podcast or meditation tape or possibly from an app that would walk you through kind of a relaxation for sleep. What do you think of those?

(33:18) [Eric Zhou]  So those are things that can absolutely be effective as part of the routine. What you don't want is... You don't want to start, say, meditation... I've heard many times people say, "You know what? I go on to calm down. Set myself to the sleep meditation activity and I really want to go to sleep at 10 o'clock so at 9:38 I turn it on." Well, that's the last thing you want to do. You don't want to do the activity because you expect it to knock you out. That increases the stress and the pressure on you having to fall asleep instantaneously. What you want to do is, you want to use those activities as being things that reduce your stress level, make you feel calmer, make you feel better. And the calmer and better you feel, the more likely you are to fall asleep and stay asleep.

(34:12) And I get that what I just said is a very nuanced way of describing it. So you should not be doing it because you want it to put you to sleep. You should be doing it because it makes you feel better and making you feel better, puts you to sleep better. So adding that extra layer makes all the difference. So absolutely continue to do those things. The more consistent you are with them, the better you will be at them and the more impact they will have on you. Just don't do it right before bed hoping that it knocks you out.

(34:41) [Mary Clare Bietila]      Got you. A follow up question, we have a participant who really uses audio books and things like that to get to sleep every night and if they don't, they find that their mind just wanders and they're distracted and they just lay awake all night. And they're curious, what are the better tactics? How do they get out of that cycle?

(35:07) [Eric Zhou]      Think about it like how a child may need a stuffed animal to sleep. You can pair anything with sleep. And I tell this to people because I see people who are in very different parts of Massachusetts. So I see patients who live in downtown Boston, next to a fire station where it's just constant noise versus patients who live in the rural parts of the state where if you heard anything, you would be running for your shot gun and because you're not sure who's coming into your house, and everything in between. And both ends of the spectrum, sleep's fine. You get used to whatever environment you're forced to live in or choose to live in, I should say. In this case, listening to that podcast or something, as you're falling asleep is something that you can get used to and something that you can also at the same time get unused to. It just takes a bit of time to get unused to it because your body has associated that activity with sleep.

(36:07) Now, is that the biggest issue in the world... I mean, if you're sleeping fine and you don't have any complaints and you're only worry is you have to listen to one podcast before you go to sleep every night. I mean, it's not perfect but pretty much as good as you want it to be. So, I would not be too worried about that.

(36:28) [Mary Clare Bietila]     Okay. All right. Does sleep quality impact rebuilding your immune system after a transplant?

(36:36) [Eric Zhou]      So, again, the data is not perfect in transplant patients but we do see that if you inconsistently sleep, or you consistently don't get enough sleep, that there are biomarkers that we can see that seem to suggest that your immune system is impaired. On one of the slides earlier that I showed you, all the different manuscripts. So a group out of Pittsburgh has done, probably, some of the best the work that I've seen on this subject. So what they do is they get these groups of college students who are looking for a couple of bucks. And what they do is they actually see how they sleep, and they actually see them during exam season versus the rest of the semester. And they actually spray in their nose some cold - literally, the bacteria that causes cold - and they see what happens. And they see how many of them get sick. They see how quickly they recover. And the folks who are sleeping better seem to recover faster and get less sick. So there is something to be said for this relationship. How much that plays a role into exactly, your specific set of symptoms, really hard to say.

(37:58) And just to make the encouraging suggestion that sleep is one of those things that can really quite quickly and easily be improved so, why not?

(38:10) [Mary Clare Bietila]      Absolutely. It's something we have control of. Let's see. The next question is, I'm able to fall asleep fairly easily but find that I wake several hours later and lay awake for good one to two hours. Any suggestions?

(38:27) [Eric Zhou]      So that's where sleep restriction and stimulus control matter because it's possible that you're spending too much time in bed. That is very much a common event.

(38:36) So sort of a typical example is somebody goes to bed at 10 o'clock, gets out of bed at 6:00 am because they think they need eight hours of sleep. But they go to bed at 10 and then wake up at 1 o'clock for an hour and a half and then go back to sleep until 6. Well, it kind of suggests to me that maybe they only need six and a half hours of sleep per night but they're just spending eight hours in bed. So their body has learned to essentially take these two shifts. Take my early evening shift, wake up, do some stuff and then take a second evening shift to get the rest of my sleep.

(39:03) And so, in this case... So that fictitious patient, what we want them to do is to spend less time in bed, may be seven hours at a time rather than eight, because what that forces the body to do is to consolidate it. This way it could become more efficient. That consolidated sleep is when they end up going to bed, falling asleep, they might wake up to go to the bathroom once or twice but they're able to fall back asleep because they have so much sleep debt. So that was the slide with the person falling asleep in the airport. That's what we want you to do all night and stay asleep first before we give you enough sleep, want you to be somewhat sleep deprived so that you can consistently sleep.

(39:43) [Mary Clare Bietila]      Great. Actually, you answered the next question so I'll move on. This question asks that, never had sleep apnea before transplant but now they do. Is that a common problem after transplant?

(40:01) [Eric Zhou]      Typically not. It's the case where you have to be thinking more of are there other treatments that were directed that might have impacted something to do with your breathing apparatus. If not, it could be weight-related. It could be age-related. Those are two other risk factors for apnea. But regardless, if you are somebody for whom snoring is an event or you have gasping arousals, meaning that you actually wake up from sleep gasping for air, or you have what's called excessive day-time sleepiness, meaning that during the day you actually can't stay awake. That's actually different than feeling tired. It's like during the middle of the day, if you're tired, it might be like, let's say, you had to mow the lawn and it was 87 degrees and you were outside for an hour and a half. Then you just want to go home and lay down and relax but you don't want to sleep.

(41:04) That's not what I'm talking about. What I'm talking about is if you are at 9 o'clock, trying to head downtown to go to work and finding yourself dozing in and out. You just can't keep your eyes open or you're even in a meeting at 10 o'clock and you're just so unable to keep your eyes open. That feeling of sleepiness is a sign of potential apnea. So these are places where you would definitely want to go and see a sleep medicine physician in your area to get a sleep study done. They do them at home now if apnea is the only thing that you're really worried about and its relatively non-invasive and usually treatable.

(41:43) [Mary Clare Bietila]      Great. All right, the next question is, can acupuncture affect quality of sleep?

(41:47) [Eric Zhou]      Totally. Again, the data on this is not the greatest. There aren't a lot of randomized control trials looking at acupuncture, in part, because acupuncture trials have historically not been as consistently performed. And a little bit beyond my comfort zone in order to explain this, but the sense is, from my understanding is, so there's different acupuncture points that the practitioner can use to alleviate symptoms or improve health. And the points that they use across different studies are not always the same so it's hard to say, apples to apples, whether or not its acupuncture or maybe the belief that you're doing something good for your sleep or something else altogether that actually causes your sleep to get better. But, as I said earlier, a very real placebo effect exists with sleep so if you think that acupuncture helps you feel better, less pain, better sleep, whatever, keep doing it. So if it works for you, absolutely.

(42:52) [Mary Clare Bietila]      The mind is a very powerful thing. If you take lorazepam for sleep daily, I believe... Is that Benadryl?

(43:05) [Eric Zhou]      Lorazepam is Ativan ®and in this case-

(43:06) [Mary Clare Bietila]      Got it. I'm sorry.

(43:08) [Eric Zhou]      It's okay. Yeah, no. Not at all. So lorazepam is something that you will absolutely want to talk about with your prescriber. It is what's called a benzodiazepine which is not something that you want to discontinue cold turkey without any medical advice. It is 100% something you want to talk about if you ever want to taper off of it with the prescriber. It's also the thing that I showed earlier in terms of benzo drug class. It's been associated with cognitive impairment issues. And so it's generally not advisable as a long term solution for sleep. If it's a short term solution, again, like a couple of days here or there then you do what you do. But as a long term solution, it's something that you would want to talk about with whomever is prescribing it to you, to think about alternatives.

(44:05) [Mary Clare Bietila]      Okay. What do you think is the optimal temperature for your room to get the best sleep?

(44:14) [Eric Zhou]      Whatever you like. Typically, it's cooler but it's like asking you what your favorite ice cream flavor is. So now we have the beauty of these electronic thermostats which are precise to the degree. You may want to run a series of experiments if this is something that you really do feel invested in. Set your thermometer, or your thermostat I should say, I'm sorry, in your home to 66. Leave it there for a week and every day, rate the quality of your sleep. Then set it to 68 and leave it there for a week and every day rate the quality of sleep. Then set it to 70, do that and you should be able to see which one feels better for you.

(45:00) Most important is to understand that you can't just change the temperature every day and see how that changes your sleep. What you want to do is set it for at least a week because your sleep is kind of ebb and flow, even good sleep. You don't get the exact sleep every single day so you want to see what it looks like over time before you say, "Oh, does this help or hinder my sleep?"

(45:20) [Mary Clare Bietila]      Okay. All right. Is there anything that this questioner can do for help with vivid dreams and nightmares. They believe it's probably side effects from medication but it's medication that they really do need to take. Is there anything you can do to prevent that?

(45:40) [Eric Zhou]      Yeah, so, sorry to hear. The first response to that is, can you talk to the prescriber for whatever medication may be causing this to actually either change to an alternative or to lower the dosage in some way to essentially try to minimize the potential that the medication has on your dreams and/or nightmares.

(45:40) If the answer to that is no, something called Imagery Rehearsal Therapy for nightmares can be used to reduce the intensity of how bad those nightmares feel to you. And there are interesting new tools, actually these are electronic devices that were developed for folks with PTSD who experienced nightmares which are essentially these wrist-based devices that sets your body's autonomic arousement [inaudible] and that actually wake you from sleep before potentially you have a nightmare. Interesting data on those devices. But for the nightmares, certainly Imagery Rehearsal Therapy has a much, much stronger base of evidence, and can be effective in improving how you feel with them.

(46:50) [Mary Clare Bietila]      Oh, that's fascinating. I am really excited to see how that comes about. Okay. So the next question is, are there specialists offering CBT-I virtually for those needing help that don't live in major cities?

(47:06) [Eric Zhou]      Yeah, I think I had mentioned this earlier. So, hopefully you live in a state where somebody is seeing people. Like probably the biggest benefit that I've seen in my life for patients during the pandemic is the fact that you can much reasonably expect that your providers will see patients using telemedicine. So I would start at the state level. If you live in a rural area and you can't access major metropolitan areas, there's probably somebody who lives in your state and you can probably see if they will see you remotely.

(47:45) [Mary Clare Bietila]      Absolutely. It really does depend I think on where professionals are credentialed, and often times, with insurance and those things you can't cross state lines. So it is important to stay in your state if you can. And I would say Psychology Today is a very good place to start.

(48:06) [Eric Zhou]      I'll add to that Mary Clare, so Psychology Today is a great place. A lot of people write they can treat sleep disorders and have no clue what they're talking about. So there's... Someone told me this, so the number of CBT-I providers in the United States numbers less than a 1000. And something like 25,000 people on Psychology Today in the country say that they could treat sleep disorders. So be very cautious that the person that you go and see, isn't somebody that's going to sell you the sleep hygiene list and that's it. That's not going to cut if you really do have insomnia. So just be very mindful.

(48:45) [Mary Clare Bietila]      Yeah, so you're definitely looking for CBT-I. Are there certain credentialing organizations that we should be looking for if we're looking for a practitioner?

(48:56) [Eric Zhou]      Yes, I mean, so they can get behavioral sleep medicine certified although many good providers that I know of, are not. I would just be open and up front and say, "Hey. Do you do CBT-I?" And just make sure that they're... I gave you the list of things that typically are done and if by the second or third session, you're not doing sleep restriction... May not be the right person.

(49:27) [Mary Clare Bietila]     Closing. That was our last question and this has been wonderful. On behalf of the BMT InfoNet and our partners, we would like to thank you, Dr. Zhou for your very helpful remarks. And, thank you, the audience for your excellent questions.

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