Debunking Myths and Crafting Sleep Strategies for MS

Debunking Myths and Crafting Sleep Strategies for MS

Episode 181 – Podcast Transcript

[(0:24)] Stephanie Buxhoeveden: Welcome to the Can Do MS podcast. I’m your host, Stephanie Buxhoeveden. I live with MS and I’m also a clinician and MS researcher. Today we’re joined by a very special guest Dr. Areti Vassilopoulos, a health psychologist from Yale who specializes in sleep and symptom management for individuals with MS and who will help us navigate the complex relationships between sleep and MS, debunk some common myths, and share evidence-based strategies for improving sleep and enhancing your quality of life. Thank you so much for being here today.

[(0:53)]  Areti: Thank you. I’m happy to be here.

[(0:55)] Stephanie: First, let’s talk about what sleep hygiene is. Can you give us a little overview?

[(0:59)]  Areti: Absolutely. Sleep hygiene is probably what people have most heard about when they hear about those tips and tricks of not using their screens too close to bedtime, um, setting a little bit of a schedule, making sure their environment is cool and dark and quiet, limiting caffeine close to bedtime, things like that are included in sleep hygiene.

[(1:23)] Stephanie: Perfect. And if anyone is interested in sleep hygiene because we’re not gonna actually talk about that a lot today, we’ll link some previous webinars and articles we have about it. But today we’re gonna talk about why sleep hygiene sometimes isn’t enough. So please, share with us your thoughts.

[(1:41)]  Areti: Absolutely. Some- some people find sleep hygiene strategies really helpful, um, but for those with MS symptoms like bladder issues or chronic pain or fatigue, it makes really hard to… basically really hard for sleep hygiene to be sufficient, um, because sleep hygiene start taking on a little bit of a life of their own. So, there can be this pain that makes it hard to fall asleep, so then sleep is shorter, and that shorter sleep makes pain even worse, and things kind of cycle in that way, and it can become really frustrating. So, people develop thoughts of, you know, laying in bed thinking, “I just wanna sleep. I- I hate that I can’t fall asleep. This is so hard.” And that’s when the sleep challenges take on a life of their own and require a more multidisciplinary approach, kind of being able to lean on um, physical therapy or your physician or a sleep psychologist to really tailor and address all these different components that make sleep with MS its own kind of beast.

[(2:43)] Stephanie: Yes. And I know firsthand how incredibly frustrating it is when sleep hygiene isn’t enough, right? Like, I have had months where I go without a good restful night’s sleep and then I worry like this is gonna make my MS worse and now I really need to sleep. And then you’re putting more and more pressure on yourself but the restless legs, the bladder waking you up in the middle of the night, these are all just real-world things that we deal with, even if we’re “doing the right thing when it comes to sleep hygiene.”

[(3:13)]  Areti: Yeah. And people might have, right? their kind of go-to solutions and they’ll tell you, “Oh, all you need to do is just cut out the coffee.” And you’re like, “I haven’t had any coffee.” Um, it can feel extra frustrating and- and they’re just trying to help. But to you who’s put in all these pieces and have factors that really, they might not be able to understand no matter how much they care for you. It can be really hard.

[(3:35)] Stephanie: Absolutely. And as with everything, you have to personalize it, right?

[(3:39)]  Areti: Yes, a hundred percent.

[(3:41)] Stephanie: So, let’s- with that in mind, talk about a little bit of fact versus fiction when it comes to sleep myths and sleep hygiene. So, let’s start with this. You’re the expert. Everyone needs eight hours of sleep a night.

[(3:54)]  Areti: Fiction. So, you’ll hear it. There are some good researchers, reasons why, right? this came to be the suggestion. But truly sleep needs vary. Sleep needs vary person to person and also, they vary depending on the stage of life. So, the age, other things that are going on. Um, and so not everyone needs eight hours. Some people need more, some people need less, and some people needed a certain amount 10 years ago, and right now they need something completely different. Really, what matters more than the number is how rested you feel the next day. So, being able to take notice of that and then tailor what you aim for based on that. So, if you notice that when you sleep eight hours, you still feel pretty groggy, but nine is the chef’s kiss number for you, then that should be your goal. Um, and being open to adjusting it as needed.

[(4:49)] Stephanie: Yeah. It’s like keeping track and a little bit of a sleep journal could help you figure out what that magic number is for you.

[(4:54)] Areti: A hundred percent. Absolutely. Because it can be hard, especially if there are several nights of disruptive sleep to- to know what’s really happening. When you’re tired trying to reflect back on what your sleep was like three or four days ago might be a little bit um, a little bit fuzzy. So being able to track it for a bit and kind of reflect back on- on what it’s looking like and how you were or weren’t able to make it through the next day feeling okay can really be what’s needed.

[(5:21)] Stephanie: Great, that’s a great tip. So, fact or fiction. All naps are bad.

[(5:26)]  Areti: Fiction. So, are long naps helpful? No. Is laying in bed most of the day helpful? Certainly not. Is playing sleep catch-up on the weekend the way to go? No. But short naps, 10 to 20 minutes, um, during a part of the day that’s not too late so it won’t impact your overnight sleep can be wonderful. Uh, especially in those with MS when there’s that fatigue and it can be hard to kind of make it through with some aches and pains and another components, um, it can be helpful to lean on it in a strategic fashion. So before five o’clock and in- in shorter durations can be helpful. Um, the other thought is to consider that naps are- are really common for a variety of cultures. So, I am Greek American, and- and taking naps as- after lunch is very common. Um, and so, we- we really want to be mindful in making sure that it’s tailored both for your physical needs as well as whatever else is part of someone’s life.

[(6:28)] Stephanie: Yeah. And even if you don’t fall asleep, just that moment of rest and relaxation where you turn off the stimuli and you just sort of let your brain relax for 10 to 20 minutes, that’s been game-changer for me on busy days where I have like a lot of cognitive tasks going on. And even if I don’t fall asleep, just taking a beat and s- being quiet and still maybe, maybe dozing off 10, 20 minutes, like you said, gives me that second wind in the afternoon without turning to the five cups of coffee, right?

[(6:59)]  Areti: Definitely. Avoid the five cups of coffee. And I love that, that pause, not just thinking about sleep but that cognitive load. There’s… our lives are so busy and are so packed with work or kids or other things that, yes, taking a moment for your body and brain to kind of settle back down and feel a bit more refreshed is huge.

[(7:19)] Stephanie: Yes, the deep breath in the middle of the day.

[(7:22)]  Areti: I like that.

[(7:23)] Stephanie: So, fact or fiction? Exercise before bed will ruin your sleep.

[(7:29)]  Areti: Fiction. And this is again, we’re leaning on how it needs to be personalized. So, some people, yes, find that exercise before bed impacts their sleep negatively. But for others, it doesn’t. Um, and it might not affect it at all, or it might be really helpful. There’s an older meta-analysis that looked at if um, exercise before bed is helpful or detrimental and they actually found that positive impact of exercise, regular exercise on sleep. And survey data from 2013 showed something similar that nighttime exercise was not associated with sleep disruption for most people in the study. Um, so, it’s helpful again to really reflect on what you notice your body needing as opposed to needing to- to stick to some of these, these ideas and these tips that people might throw out that can be so hard.

[(8:24)] Stephanie: Yes. And something’s better than nothing, right? And exercise is one of those things where you get it in where you can. And maybe for a parent, that’s after you put the kids to bed, but before going to sleep. And that’s fine. And again, keeping track of what works for you and having that flexibility and awareness into your own body, I think is- is key. So, this has been fun so far. We have a few more. All right. Fact or fiction? Morning people are healthier and more successful.

[(8:54)]  Areti: Oh, my goodness. This one is everywhere. So, fiction, right? There, there are so many things out right now on uh, social media that I almost feel like are making people feel like they need to wake up at 4 a.m. to just get everything done and be amazing and how stressful when you’re juggling so many things. Um, there’s this thing called chronotypes and it refers to how your circadian rhythm works to provide you with periods of more or less wakefulness. There’s um, this scale that’s used in research, and then there’s this awesome kind of chronotypes that you might see a bit more um, a lion, of- of the lark or the dove or- or the owl and really, what that does is, is show you the- the skill kind of evaluates what time of day is most productive for certain people. So, there are some people that are morning people. They are the larks and they’re super productive in the morning and getting up and getting going is the way to go. But we have night owls, right? And there’s a scale that shows that those people are able to be much more productive and take on more cognitive taxing activities later on in the day much more successfully. So, you absolutely don’t have to be a morning person to be healthier and more successful. The caveat to that might be if your work or life schedule doesn’t align with your chronotype and that can be really tough. So, taking notice of it, seeing if there can be things that can be shifted around in any way might be really helpful.

[(10:32)] Stephanie: Yes. And so, I was a nurse for a long time and the shifts start at 7 a.m. Oh, it was so hard. It was so hard. I’m not a morning person. But at the same time, I love to get up in the morning, have a cup of coffee and get a lot of my like, really, mentally like needing sharp focus tasks done in the morning. And then towards the afternoon is when I prefer to have meetings. So that has changed throughout my life and throughout my MS journey. So again, going back to what you- you said, right? You might sometimes be a night person. After deciding I hated 7 a.m. shifts, I switched to night shift and I was a vampire for a few years. Now, I’m back to being a morning person, right? We change. We shift.

[(11:12)] Areti: We change. And we could be allowed to- to change. I think there- there’s so many different containers and spots that the world tries to put us in, and then we feel like we need to put ourselves in but be open to that change and be kind of along for the ride.

[(11:26)] Stephanie: Yes. And those morning people are just so smug about it.

[(11:28)]  Areti: So smug about it. I’m not a morning person, so we [inaudible] about them.

[(11:34)] Stephanie: Uh, one last one. Um, wearing a smartwatch or some- something similar, a wearable of some kind will help me sleep.

[(11:43)] Areti: Huh, that’s fiction. Um, and- and sometimes can be really stressful. So, there’s this concept of awareness promotes change. And I think that’s absolutely accurate. We see it in the research and- and it’s impactful. But when we think about wearables, um, it can be stress-inducing. They send you little notices letting you know how you slept and sometimes the way they interpret your sleep is different than yours. So, I work with wonderful people sometimes that’ll say, “I thought I had great night’s sleep last week, but my watch told me that it was actually a pretty bad sleep score, and I didn’t do a really good job,” and it stresses them out. And there’s a concept called orthosomnia, um, which is where people become preoccupied or concerned with improving or perfecting their wearable sleep data. That can actually make things a lot harder. It can make sleep concerns worse, and it can make it harder to achieve that recharging sleep. Um, so wear them with caution. I think they’re wonderful. I love data. And if you notice that it’s actually unhelpful, take a pause. It- we see in sleep research that what matters most is someone’s perception of their sleep quality. So, keeping a sleep log on your own is even more helpful than what your wearable might tell you sometimes.

[(13:08)] Stephanie: Absolutely. I thought I was just crazy. I thought, I thought I had no insight into what quality sleep I had because I would wake up being like, “Wow, I really crushed it,” and check my number. And it was like, “You had the worst sleep of your whole life.”

[(13:22)] Areti: Gosh.

[(13:22)] Stephanie: You probably feel terrible today.

[(13:24)]  Areti: Are you okay?

[(13:25)] Stephanie: Are you okay?

[(13:25)]  Areti: It would be hard.

[(13:28)] Stephanie: And then other nights when I feel like I had a terrible night’s sleep, the… I have a, a Sleep Number bed, right? So, the mattress is actually what’s telling me what. And sometimes I apparently just levitate out of bed for hours. And so, it’s not perfect, right?

[(13:44)] Areti: You got a superpower there. Yeah, it’s not perfect. It’s not perfect and it’s- it can be really stressful. And I really feel for people and sometimes I feel for myself because I- I love data. I’m a clinician, but I’m also a researcher. And um, I think I’d- I’d hope that it would be more helpful and less stressful. But sometimes that’s simply not the case.

[(14:03)] Stephanie: Yeah. And we see that time and time again with wearables, right? They can be helpful for weight loss, but at the same time, some people get weight gain because they see the wearable say, “Well, you have 500 calories left for the day.” So, take it all as just one piece of data, but also take into account how you feel. You know your body better than the smartwatch or the mattress, right?

[(14:24)] Areti: A hundred percent. And they’re working and refining these things, right? These are quite new. We didn’t have them some time ago. So, you know, just like we are changing, and our needs are changing over time, let’s be open to those kind of um, changing and improving and- and maybe us again, taking it with a grain of salt like you said.

[(14:43)] Stephanie: Yeah. So, how can someone with MS really figure out what works for them?

[(14:49)] Areti: Yeah. So, I think we’ve touched on this a little bit, right? This- this theme throughout is the concept of really tracking for yourself. So, tracking your energy levels, tracking your sleep schedule, figuring out what fits and feels best for you. And then adjusting routines a piece at a time, not all at once. I- I- I caution against that, but a piece at a time and then seeing how things feel. And then if new symptoms arise or changes come up to a treatment plan then adjust. If life changes happen and a child or something else that- that comes up, um, be open to change. It doesn’t mean that you have to track all day every day but while you’re trying to refine these things or if you notice sleep is something you wanna work on, take that moment to reassess and kind of readjust.

[(15:40)] Stephanie: Yeah. And like you said, try a new routine, see how it goes. Worst case scenario, something else needs to be done.

[(15:49)]  Areti: Exactly, exactly. And- and I think that that’s a huge point, right? Being open to needing to modify. I- there’s so many things going on at any given moment that there can be a lot of pressure to find the perfect solution right away, but we are human, we are imperfect, and the strategies need to be tailored and adjusted. So being open to that, that maybe it won’t be the first and second or third thing that you try that um, is the- the secret sauce.

[(16:18)] Stephanie: Yeah. Now, what if you’ve tried three or four or five things and you still aren’t there and you’re still not getting the sleep that you need, where do you turn? What can you do?

[(16:29)]  Areti: Yeah. So, it- it depends on what’s going on. So, seeing is it severe fatigue or insomnia or is it a new symptom that’s coming up? So, I would always say talk to your provider, right? Talk to your team, your MS team to share all these concerns and challenges that are going on and then they might recommend a few things. So, sleep hygiene, again, works for some, wonderful and lovely. Adjusting sleep and tracking and becoming aware is another thing. But if you’re like, “Hey, I’ve tried it. That’s not, that’s not fixing it for me.” There are evidence-based strategies and interventions. So, things that have been researched, have been evaluated and we know are helpful for, for people. Um, those are things like cognitive behavioral therapy for insomnia, which is the gold standard for sleep treatment. There’s also acceptance and commitment therapy for insomnia, which is what we call a- a third wave treatment and is growing in- in research and- and efficacy. And those are things that a sleep specialist might recommend, so a sleep clinic, your MS team, um, or if you’re able to kind of search on your own for a sleep psychologist, they can be incredibly helpful to administer these treatments and help you through it. Sometimes accessing these evidence-based treatments can be challenging. Um, so, there are kind of digital-based CBT-i apps um, that can be helpful or books um, and other resources that can be a bit more self-guided if you’re kind of trying to get into a sleep clinic with some challenges.

[(18:06)] Stephanie: That’s great. And we’ll make sure that we link to some of those resources down in the description of the podcast. So, thank you for that. Just- and for somebody who’s never heard of cognitive behavioral therapy for insomnia, what would that entail? Can you give us just a little idea of what you could expect?

[(18:22)] Areti: Absolutely. So you would meet with a practitioner, often a sleep psychologist that has training in cognitive behavioral therapy for insomnia, and they would have you track your sleep through a sleep log and then they would evaluate that with you and explain to you a lot of sleep science so that you can have the best understanding of sleep overall and your sleep specifically. And then they would move on to cognitive skills and behavioral strategies. On the cognitive side, those are the thoughts that pop into our heads when we are laying in bed, tossing and turning, feeling frustrated, thinking about how hard tomorrow is gonna be because our sleep tonight is so poor and how we wish we could sleep better and how it’s really unfair that our partner is sleeping next to us and so soundly resting while we can’t sleep and all those thoughts kind of pile on. And so, you kind of take a look at that and you notice the automatic thoughts, you learn to identify the ones that are unhelpful, and you try to reframe them in a way that supports sleep as opposed to worse in sleep. So that’s the C of CBT.

The B is incredibly helpful. These are the behavioral strategies. These are things like stimulus control, which is where we avoid spending time in bed for anything other than sleep and intimacy in order to really make it a sleep space and where you might be told to, “If you can’t fall asleep, get out of bed after 15 minutes. Do something relaxing and come back.” As well as something called sleep restriction or sleep compression where your practitioner will look at the sleep schedule that you provide them and your sleep log that you keep, and they’ll notice all these holes. We kind of call it Swiss cheese. Your sleep schedule will look like Swiss cheese, and they will help you compress your schedule so that you are in bed for only the amount of time that you are actually sleeping. And then once your sleep efficiency, which they calculate, gets better and better, they’ll extend that sleep schedule in a really systematic approach. Um, it’s a very involved treatment, but a very efficacious treatment that can be life changing.

[(20:33)] Stephanie: That sounds really fascinating and worth checking out. Thank you so much. I don’t know how you got in my head with all the thoughts that run through my mind when I’m not sleeping.

[(20:42)]  Areti: Almost like I do this regularly. You’re not alone.

[(20:48)] Stephanie: No, I thank you so much for being here with us today and for sharing your expertise and I hope that this helps somebody who’s struggling and maybe, you know, the average sleep hygiene advice didn’t quite cut it, but there is hope and there is still stuff that you can do to get that better night’s sleep.

[(21:06)]  Areti: Yeah. Thank you so much for having me. I hope this is helpful and absolutely will have these resources available. Um, you’re probably doing better with you-your sleep than you’re giving yourself credit for is kind of the- the nugget I’ll leave you all with.

[(21:19)] Stepphanie: I love that. Thank you.

[(21:20)]  Areti: Yeah.

[(21:20)] Stephanie: Thank you for listening to this episode of the Can Do MS podcast. If you like this episode, please leave us a rating and review on Apple Podcasts or Spotify. We appreciate your feedback. We’d also really like to thank our generous sponsors for their support of this episode of the Can Do MS podcast. Until then, be well and have a great day.

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