Managing Sleep Problems after Transplant

Many transplant survivors have difficulty falling and staying asleep. Learn how to solve sleep problems without medication.

Presenter: Eric Zhou PhD, Harvard Medical School Division of Sleep Medicine

This video is a recording of the workshop presented at the 2019 Celebrating a Second Chance at Life Survivorship Symposium

Presentation is 41 minutes, followed by 15 minutes of Q&A


Insomnia is a common problem after transplant. Cognitive behavioral therapy can produce better results, with fewer side effects that prescribed or over-the-counter medications.

Highlights of Talk:

• The notion that everyone needs 8 hours of sleep each night is a myth

• A six-to-eight-week course of cognitive behavioral therapy designed specifically for insomnia can relieve the problem without medication

• “Sleep hygiene”, commonly prescribed for insomnia, does not work on its own

Key Points:

03:24 In the general population, one of out every three people struggles with insomnia.

04:55 Persistently poor sleep has serious health consequences.

08:26 People vary greatly in the amount of sleep they need each night.

13:19 Sleep medications can create unwanted side effects

18:16 The American College of Physicians recommends cognitive behavioral therapy as the first line of treatment for insomnia 

21:50 To fix your insomnia you have to understand the trends and patterns of your sleep

27:20 The best sleep medication you could ever take is not sleeping.

28:10 It's important to follow a strict routine about when you sleep.

35:09 Sleep hygiene is often recommended for people with insomnia, but used on its own, it does not help people with insomnia.

39:57 Resources for finding a cognitive behavioral therapist for sleep program

Transcript of Presentation

00:00  Introduction. Good afternoon everybody. So this actually is the worst possible time to give a talk, because ... it actually is true, because your circadian rhythm dips as you get into the afternoon, which is why people nap, and why this is a time in which I will not personally be offended if I see anybody nodding off.

00:19  Why sleep is important. Now I have the privilege, and it really is a distinct privilege, to be able to talk to everybody about sleep today. I'm going to do my best to race through my slides, because they're boring, because your questions are going to better. I actually want to be able to have the opportunity to answer whatever questions you may have, but I hope to be able to start that conversation by giving you guys a bit of a background about sleep and why it's important, and also what kinds of things you should be thinking about, as they relate to sleep.

So, it's probably not a huge sales pitch to say that we think it's important, that's why you're here, but also if we think about just the sheer volume of sleep that we all get, on average over the course of a lifetime you're going to spend a third of your life sleeping. And if you really do believe in evolution, or if you believe somebody created you, you've got to figure that this person who created you, or evolution didn't force you to waste one out of every three moments in your life, that it does something good, and if you're not doing it right that something bad happens.

Now there are a range of sleep disorders, there's an entire textbook called the International Classification of Sleep Disorders, it is a cure for insomnia, don't read it. But it has a whole range of sleep disorders in it, which is to say, when everybody says to you, "I don't sleep well," there are so many interpretations of what that means. This is an incomplete list of different sleep disorders that often co-exist with one another. The reason I say this is because, if you don't sleep well, it may be one, two, three, four of these things, or maybe none of them, and it's just your sleep is kind of ... wow six of them, we've got, it's like Price is Right.

02:11  Insomnia is the most common sleep disorder after transplant. Which means there's a lot of things to think about, not just, "I sleep poorly," we need to define that better. We can certainly talk about that more later. I apologize that you probably can't read this at the back, but today we're going to get to talk about insomnia. And the reason that we talk about this is twofold: first and foremost it's likely to be the most common sleep disorder, post-transplant, and secondly it's because this is the one that most medical providers do the worst job of treating, so I want you to understand. It's common, and there are things you can do that your physician typically will not do, that we'll talk about today.

Now you're not alone, obviously, look around you, there's a lot of people, but in the universe there are a lot of people with this struggle, so when you go to Starbucks somebody standing next to you is likely reporting an issue. So if we look at this and define this as either someone who has just some symptoms, or some people who actually have a full-blown disorder, alright? In Canada, these are talking about epidemiological studies looking across the entire country, in Canada you're talking about one in three people essentially having symptoms, but one in 10 having a disorder.

03:24  In the general population, one of out every three people struggles with insomnia. And if you look across Norway, and Great Britain, and France, and the United States, it is pretty consistent and pretty remarkable across almost all of these different countries and different people doing the work, that in the general population about one in every three people struggles with their sleep at the symptom level, And that means, if we think about that in the United States, that's every single person along the Eastern Seaboard. That's a lot of people in this country who struggle with sleep, so it's not just you. However, hopefully I can convince you that there are a lot of ways that we screw up how we fix these sleep issues.

Insomnia is ... somebody just approached me earlier and said that they actually had their treatment, or their wife's treatment up in Boston, so this is on Comm Ave, not too far from Boston University if you're familiar, there's a chain of cookie stores called Insomnia Cookies. Which sounds really funny, right? Ha ha, I can't sleep, I'm going to go get a cookie, it's perfect for college students. Nobody laughs if we change the name to BMT Cookies, it sounds like a terrible name, no one would go to that store, right? I hope. You're really weird if you did. But the reason that I go back to Insomnia Cookies versus BMT Cookies is because insomnia really matters, it's not just, "I can't sleep," which is kind of laughable, you laugh about it in movies and TV shows. I'm hopeful that I can convince you that there are significant ways it gets under your skin.

04:55  Persistently poor sleep has serious health consequences. Now, I don't want to waste time showing you paper, after paper, after paper, after paper of what happens if you chronically sleep poorly. If you would like to, I would be happy to send you all of this, if you really do want to do the reading, but if you can take me at face value and understand that in almost every single large-scale study that's been conducted looking at sleep and health, we know that if you don't sleep enough, or if you sleep in poor quality, or if your sleep is disrupted all of this stuff happens, and it's bad stuff. I mean, this isn't a trivial, "I wake up in the morning and I feel groggy," which is what most people think about, this is, it actually increases your likelihood of cardiovascular disease, of weight gain, of depression, of attempting suicide: it matters.

05:47  Breast cancer study showed sleep efficiency can affect survival. Now, not wonderful research in the BMT world, but if we borrow a little bit from a place that many of you are familiar with, which is the oncology world, a really cool study was done out of Palo Alto, and what these Stanford researchers did was they took a group of women who had metastatic breast cancer, and what they did was they put something called an ActiGraph on these women, which kind of looks like a Fitbit, but we're going to talk about that in a minute. It's a professional Fitbit, if you will, and this device tracks when somebody sleeps, and when somebody's awake.

What they looked at as a marker was a thing called sleep efficiency, it's a simple calculation: it's the amount of time you spend sleeping, divided by the amount of time that you're in bed. So if you go to bed, your head hits the pillow, you fall asleep, and you wake up with your alarm in the morning that's 100%. And like most things in life, the more efficient you are, the better you are at it.

But imagine somebody who goes to bed and doesn't fall asleep right away, it takes an hour to fall asleep and wakes up for another half-hour in the middle of the night, their sleep efficiency might be 75%, 80%, whatever. Not good. In this study what they looked at was comparing women with a sleep efficiency below 85%, versus above, and that's usually the threshold we use in clinic. I know this is a lot of lead-up, I haven't actually showed you the results, but what do you think the different was in survival? This isn't 

Now what they showed, in the red it's the survival curve for women whose sleep was below 85%, and the blue was for those above. You don't have to be a statistician, I'm assuming everyone here says, "I really want to be in the blue curve, I don't want to be in the red." And what's stunning, and this is a follow-up over about an eight-and-a-half year period, or nine-year period, okay, what was astonishing was that, for the women who slept poorly, if we improved their sleep efficiency by 10%, not a lot, that this increased survival by 32%.

Which is to say, if you told Pfizer tomorrow that there was a way that they could prolong a breast cancer's survival by 32%, that executive would have a billion dollar bonus sitting in his or her bank account at the end of that year. And this is just sleep. That matters.

08:26  People vary greatly in the amount of sleep they need each night. Now, if we think about a transition from a ... So I hope I convinced you, sleep matters. Now if we transition from that into commonly asked questions, probably the most commonly asked question I get is, "Well, how much sleep do I need?" And thanks to really, really crummy news bytes, I mean we are now in a stage in which all of our news seems to be consumed in 140 characters, and if you can't sum up an important finding in that tweet, it doesn't get disseminated. How many folks here think, or have thought that you should be getting eight hours of sleep per night?

Yeah. It's a lot. And if you didn't, raise your hand, it probably means at least you've heard that eight is the sweet spot. And in reality, that's a gigantic crock of shit. It's an average. It's the average, actually, for not even older adults, it's the average for a 27-year-old. Which is to say, if we look at everyone here, the average height, I don't know this, but let's just say the average height of the American man is 5'9, if you're 5'11 do you go to your doctor's office and say, "I'm too tall, I need to cut off a couple of inches,"? No, it's who you are.

And sleep is exactly the same way. You are each independent sleepers, which means your sleep goes in a range. So what you see is, for example, if you are 60-year-old adult, typically you sleep between seven and nine hours, but the range could be as little as six or as much as 10, and there's nothing wrong with you.

That, I often get patients who just come in and say, "You know what Dr. Zhou? I don't feel like I sleep enough, that's my problem." And in reality it's actually just how much sleep they needed. So it's important to keep this in mind, which is that everybody here is a snowflake when it comes to sleep. You have your own sleep need, not some average for the community. In terms of sleep, this is something that I am betting that most of your providers have never taught you about, and I'm betting that because I know where I work it doesn't happen, and I also know that in every study we've ever conducted that's what our patients are telling us.

10:58  Doctors seldom screen for insomnia, so they’re often not aware if it's a problem. So in this case, it was a really interesting study that was done in Germany, where what they did was for thousands of primary care patients, before they went to see their doc they filled out some paperwork to give you a sense whether their insomnia was mild, moderate, or severe. And then after the visit they actually checked the doctor's notes to see, well did this doctor actually figure out if this person has insomnia? And if you look on the far right, 60.8% of patients with severe insomnia, their PCP had no idea that this was an issue. Which is, again, likely the case for many of you in your ongoing care.

We ended up, because of this curiosity of what was actually happening at cancer centers across the country, surveyed every single one of the NCI-designated, comprehensive cancer centers in the country. Now we picked those because we figured if it wasn't happening there the odds were probably good it was not happening at a smaller, less resourced center. I mean we're talking about places like the Farber, like Sloan-Kettering, like MD Anderson, we're talking about these gigantic behemoths.

And what we found was over half didn't routinely screen for sleep disorders, that 70% or almost didn't have anybody who dealt with sleep actually onsite, and that 14% of providers felt like they were actually prepared to treat sleep, which at the end of the day says that more than half of these programs felt like the majority of their patients weren't getting good sleep care. So if it wasn't your primary care, which I just showed you is not likely to talk to you about it, if it isn't your hematologist, your oncologist, your transplant specialist, then who in the world do you get to talk to about this?

If you're in that position, you struggle with sleep, you go to your physician's office and he or she looks at you, when you tell them you can't sleep, their option's pretty much, I'm going to guess, if you think, at the end of the day they're going to prescribe you something, or there's this other squishy stuff that you might've heard of. We'll talk about the squishy stuff in a minute, but let's 

13:19  One in five Americans take sleep medications, which can produce unwanted side effects if taken long-term. Now we know, from nationwide data, that's one in five Americans, not folks who underwent transplant, or folks who are struggling with some chronic illness, one in five average adult Americans within the past 30 days took an over-the-counter or prescribed sleep medication. This is a multi, multi-billion dollar industry.

There is a lot of money being spent taking stuff for sleep. Now there is a time and a place for everything, including medications designed to assist with sleep, but if you read the actual approval label for prescription medications for sleep, so hypnotics like Ambien, or things used off-label like Ativan, or Trazodone, or Klonopin, these drugs for sleep, they're all designed for short term use.

In the long term, and I've seen patients who've taken Ambien for 30 years, there is a risk associated with this, and there's really great data to show that almost all of these drugs, when taken long enough, have a risk of associated increased mortality.

In this case, this is for folks who are taking as few as 18 pills a year, so you don't have to be taking it every single day for decades for it to matter. Now, the mechanisms by which this operates, complicated, I won't go into the details and bore you, but we can talk about this if you're curious afterwards. It's just to say, not something that we want to liberally be throwing out there like we're giving folks gummy bears. Just a thought though. But like I said earlier, there is a time and a place, and for me, for example, when I hop on a flight where I have to sleep, I'll take something. Which means, again, time and a place for everything.

15:17  Melatonin is not regulated by the FDA and actual amount of melatonin contained in a pill can be very different than what it says on the bottle. Now, melatonin, we call this Vitamin M now because it really is something that has been marketed not as a way to help sleep, but now it's being marketed as something which you should be taking for sleep health. It's like taking your daily vitamins. How many folks here either are taking or know somebody who's taking melatonin? That's a lot of people, yeah.

And yet, what do we know about this? Well we do know one very important thing, it's not FDA regulated because it's over the counter. Which means, theoretically I could bottle anything, and if I know somebody at CVS [who] is willing to put it on the shelf I could sell it.

So what a group of researchers did is they went into a pharmacy, took I think 28 over-the-counter melatonin bottles off the shelf and said, "Let's figure out what's in here." And what they found, and if you can't read this I will read it for you: "Melatonin content was found to be highly variable between samples and lots, with no pattern observed between brand, form of supplement, or labeled value."

In other words, it was a scientist's way of saying there was no consistency whatsoever. What was really alarming was the range of melatonin in the actual tablets or pills, at the high end, was 478% more than what the label said, and at the low end was 83% less than what the label said. So this would be kind of like if you went out, bought a two-liter jug of Pepsi, but then you realized you actually got 10 liters because it was just one of those days at the plant. Or maybe you came home and there was half a liter, because it was another one of those days at the plant. You'd probably be a little concerned about quality control, and yet this is the melatonin concern is that this is what 

Also, notably, for those of you who might take an SSRI, for example and anti-depressant, that about one in five of the samples they tested contained serotonin in it, which makes sense as it's a precursor to melatonin, but it probably shouldn't be in there if you aren't aware that you are ingesting it. Again, time and a place for this, which means for my patients, if you're struggling with a sleep phase disorder, if you are a shift worker, if you're trying to deal with jet lag, this absolutely is part and parcel of our arsenal, and we'll talk about specific brands, for example, that might work. But again, long term, just something to be aware of.

18:16  American College of Physicians recommends cognitive behavioral therapy as the first line of treatment for insomnia (CBTI). Now, if you're saying, "If prescription drugs don't work, if melatonin doesn't work, and over the counter stuff is not that safe, so what do I do if I'm struggling with insomnia?" Thankfully, the American College of Physicians, two years ago, gave us a really clear sense and told us what it was that we needed to do. And what they said was that they recommend all adult patients receive something called Cognitive Behavioral Therapy for insomnia, or 

Now, I want us to be mindful that CBT are three letters you often here when it comes to therapy. You may have heard it in the context of people who've gotten CBT for depression, for an anxiety-related disorder, for PTSD, I need you to understand, these are all different than CBTI. It has the first three letters, but the last letter matters. So if you find somebody in the community who's doing CBT, it doesn't necessarily mean they do this work.

There are five components of cognitive behavioral therapy for insomnia (CBTI) Now, to give you a sense of what it looks like, what is actually in the black box between someone who can't sleep and the end of treatment, I'll tell you that there are five core components, of which two, the first two, are the real heavy hitters. The five core components: sleep restriction, stimulus control, and those two are the heavy ones, sleep hygiene, cognitive issues, and relaxation are the three light ones. Which means many of you have heard of sleep hygiene, that's a light one, and I hope you heard me say that, I'm going to talk about that in a minute. The heavy hitters, sleep restriction and stimulus control we'll talk about in greater detail.

20:07  Dealing with an insomnia problem is not about addressing the loss of one night's sleep. Now, the core of all of this work is this message that the sleep that you are going to be invested in caring about is never about tonight. And by that I mean for folks who sleep poorly, what happens if let's just say last night you got here late, you didn't sleep at all because there was a rowdy kid next door, and you woke up really early for this conference, well what are you more likely to do today? Take a nap, go to bed early, sleep in late tomorrow, right? That's dealing with how you feel tonight. Now I want to explain to you why that is the worst solution for you in the long run.

Now, when we talk about CBTI I have, I think, 20 more minutes, 10 more minutes, not a lot of time because I want to leave time for questions, so what I get to give you, so this is a photo I took. I went to see my grandparents in China a year-and-a-half ago, this was the Starbucks that was there. If you can't see it at the back, they spelled Starbucks S-T-E-R-B-U-C-S-K. It really looks like a Starbucks, right? The coffee sucked. Oh they did everything right, I mean this is beautiful to me, this is hilarious. But what I'm going to give you is the Sterbucsk version of what real CBTI is. It looks like it, it kind of feels like it, but it's not the whole deal because again, we don't have enough time. But again, happy to have a longer conversation afterwards. I'm trying to distill what occurs over the course of about six one-hour sessions to this 15 minute window, so I apologize that I have to give you this version.

21:50  To fix your insomnia you have to understand the trends and patterns of your sleep. Now, first and foremost, as part of this work you must understand sleep. In the same way that, for your care, you go and get blood work done, go and get scans done, you don't just show up at your hematologist's office and go, "What do you want to do today?" That'd be weird, right? They wouldn't go, "Okay, so we're going to do this transplant thing, because I kind of looked at you and I feel like that's the right answer." Right? You would probably, hopefully, be getting a new doctor at that point.

In this case, when it comes to fixing your sleep you actually need to understand, not just generally, "I don't like my sleep," but specifically what is happening, and one night your sleep does not make. It varies dramatically from night to night to night, so it's about averages over weeks to understand trends and patterns.

In the same way, for example, that for anybody who wants to think about weight loss you don't go to a weight loss program and say, "Yep, last night I just had salad, so I'm good for the rest of my life." Well no, it's like, what about the rest of the week, right? In the same way with sleep, you need to understand the bigger 

22:56  Fitbit and similar devices do not provide useful data about sleep. Now, how many folks here have used their Fitbit, their Apple watch, their something to look at the sleep data? Only a few of you guys, really? I'm surprised, okay.

Well, do you want the good news, or the bad news? You want the bad and then the good, is that what you heard? Okay. So the bad news is the data is useless. Sorry. The good news is it was entertaining. I'll explain why it's useless. It won't be useless for long, that I believe wholeheartedly. It's useless now because it's complicated, right?

So I'm wearing a device on my wrist, and let's just say that I happen to be completely immobile this entire hour we're talking, and I don't move my left wrist at all, and I just gesture with my right wrist. How does the Fitbit know that I'm awake? It's not a trick question, how does it know? I can't tell it, it doesn't know, right?

But what if I'm actually laying in bed at this exact same angle, and I am sleeping for an hour, and then I wake up because my daughter woke me up? How does it know I'm asleep? It's hard. That's the challenge, it's actually the technology in these devices, versus the ActiGraph, which is that device I mentioned earlier that they used in the study in Stanford, they're both accelerometers, it measures whether or not you move. It's the algorithm that calculates whether somebody is asleep or awake, that's the million dollar question. Yeah.

Now, these devices, these consumer wearables, they don't have the motivation to get FDA approval yet to classify themselves as a medical device, because there's plenty of you, as you saw, who will pay $79.99 to buy one. They're great for tracking steps, for now they're not great at tracking sleep but they will be in the very, very near future. But for now be mindful of that.

25:14  Step one in dealing with insomnia is to create and use a sleep diary. So if you think about how you should be tracking sleep, this is going back to 1995, you use a pen and a piece of paper. That's it, it's not complicated. If you just search for a sleep diary you will see examples, whether it's a visual sleep diary where you simply shade in when you slept, or a text-based diary where you report things like when you went to bed, how long it took you to fall asleep, how many times you were awake at night, it doesn't matter. It's all about getting this data on a nightly basis, and then averaging that to get a sense of what your sleep looks like. So this is step one, after my evaluation of every patient, is they start tracking their sleep.

26:01  What is the best medication for sleep? Now, sleep restriction is this wonderful, beautiful feeling that this lady has at the airport, where she is sleeping despite the fact that it is loud, and bright, and probably very germ-infested where she is. She's sleeping. 

We've all had this phenomenon happen, which means my question to you, and it's a trivia question, is here we have three different drugs that are commonly prescribed for insomnia: we have Ambien, we have Klonopin, and we have Ativan. Other than the lovely BMT nurse to my left, any other medical providers here? What do you do ma'am?

You're a nurse navigator. So what do you think is the right answer ... we've got another hand up, what are you?

 [Audience member] I'm a transplant coordinator.

Great, how many folks here would prescribe Ambien, or Klonopin, or Ativan, what's the right answer, what's the best sleeping pill?

She hates all of them. Well you say it, none of them, but the reality, as I just showed you, is the fact that one in five Americans has taken something, so there's a lot of folks out there taking stuff. So we can't say none of them, because you kind of get a sense my answer to you is none of them, that's a little bit cheating, the answer really is none of them, but they're used a lot.

And we've all had this happen before, that overwhelming compulsion to sleep. And if you think about that young lady I just showed you at the airport, well how many of you have gotten up at 3:00 to catch a plane, gotten on the plane, and somehow in the itty bitty little space managed to fall asleep? Right? Yeah. How does that happen? You are in a place that's designed for nothing else other than being the most uncomfortable place you can spend four hours, but you fell asleep, but you couldn%2

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