No rest with MS? Managing sleep disruption (Episode 5)

Payrovi: So we’re going to be talking about why sleep can be so elusive. And we’re going to also talk about what we can do to address it with behavior — when supplements or medications might be helpful and when to seek help from a sleep specialist. So, Mirla, as a neuroimmunologist, how often do you hear about sleep problems from your MS patients?

Avila: Well, just by coincidence, I just finished today’s clinic and my last patient was all about sleep disturbances and some symptoms that sound suspicious of restless leg syndrome, which we’re going to be talking a little bit more, but it is very common. And as you know, fatigue with MS is also very common. And if you don’t have a good night’s sleep, definitely that can worsen the fatigue.

So sometimes it can become like a snowball effect in which it’s sometimes difficult to be able to disrupt that cycle and to improve things, we have to find out what is the reason why the patient is not sleeping. Could it be something as simple as maybe waking too much, too often at night to go to the bathroom? Is it more something like restless leg syndrome, sleep apnea? So all these things are very important.

And when a patient complains about fatigue or not sleeping well, there are several questions, as physicians, that we need to know more about to try to find and pinpoint the reason. Sometimes we need to do some extra testing, but definitely we’re going to be going over this today. And before we get started, we had actually some questions submitted by our audience, if you want to start with the first one.

Payrovi: Absolutely. So our first question is submitted by Laura. I’m a 63-year-old, and I was diagnosed with MS at the age of 60. I don’t know if my erratic sleep patterns are due to MS, age or life stressors. I do have a great deal on my mind, but sleep was never impacted as much as it has been in the past year. How can I tell what is causing this?

I think this is a really common scenario, and it’s not always easy to tease apart what’s a sleep problem versus something related to MS versus other chronic medical conditions. But I think we can do a good history to kind of get to the bottom of when did this start happening? Does it coincide with other major life stressors, which it sounds like for Laura, it might. And that can help us better understand what therapies can be more helpful.

And I often find that behavioral strategies can be really helpful for sleep, but it’s not always easy to pick apart what’s MS and what’s just sleep. What do you think, Mirla?

Avila: Agree. I mean, I think all of us, if we’re under stress, we don’t sleep well. You may wake up and be having racing thoughts about things that you have to do or different things that are taking you away, your sleep. So, as you said, just by interrogating a little bit more, the patient getting to understand a little bit more what is the background, what’s going on, we can try to find a reason and a solution.

Sometimes meditating — as we’re going to see, sleep hygiene, not being in your phone before you go to bed — can be very helpful. Maybe reading a good book before going to bed also. But I know we’re going to be talking a little bit more about all the different things with sleep hygiene.

Let me go to the second question that we have here that was brought up by Michelle. And it says, I have always had trouble staying asleep. But in the past two to three years I have trouble falling asleep too. My body is heavy and tired, but I lay down awake sometimes for hours. If I am overtired, my body twitches, making it harder to sleep. I have tried anticonvulsants and sleep medications, but they are temporary help and cannot help me have a full night rest.

So what is the advice? I think this is another good reason. So she’s not mentioning stress, but she’s mentioning that even that her body is tired, she’s not able to relax. Something important is that she’s saying body twitches. So to me, that makes me a little bit of a hint. Can this be restless leg syndrome?

And very similar to the patient I just saw before I jumped into our podcast this afternoon, restless leg syndrome can be very common in MS. Actually, when I was in my fellowship several years ago, we did a study and we found that restless leg syndrome and other types of sleep disturbances were more common in MS than in the general population. Sometimes it can be associated to anemia and to low ferritin, and we have to check the ferritin levels.

Ferritin basically measures the amount of iron we have in our blood. And if that was the case, by correcting that it may make a huge difference. And the restless leg syndrome will get better. But sometimes we have to go to other medications that can help you with that particular restless leg syndrome, if that is the case. And sometimes we need to do further testing, like a sleep study.

Payrovi: Yeah, those are all great pieces of advice right there. And there is a way to navigate this. You know, people should reach out to their doctors if they’re having these types of symptoms. So as a functional medicine doctor, what this makes me think about is, you know, muscle twitches, muscle overactivity. Sometimes that can happen when our mitochondria aren’t super robust and our muscles aren’t well energized. They might sort of misfire and you can have muscle pain, what might even feel like fibromyalgia.

So tending to our mitochondria through a variety of ways — a topic for another time — but addressing nutrition, stretching before bed, like gentle yoga, might be really helpful. These are some of the things one can try. Other things that come to mind are magnesium. Now, of course, you want to talk to your doctor if you’re going to start a new supplement, but either oral magnesium or even topical magnesium. I have heard from a lot of patients that it helps with muscle cramping, so I wonder if that might help.

I don’t know if this is more like — I mean, this sounds more like a twitch and not a cramp — but again, I just wonder if some oral magnesium might be more helpful than the topical. Other outside-the-box things I can think of are like acupuncture. I feel like acupuncture can often reach symptoms that we can’t reach with our medications — things that are hard to treat. So it might be worth a trial of acupuncture, somewhere between six to 10 treatments, if you can do that many. Though some people might even find some improvement in the frequency and the severity of their twitches even with one or two treatments.

So I think it’s worth a try. And by the way, for anybody interested with acupuncture, look at your insurance plan. A lot of plans do cover acupuncture, so just know what your benefits are. So those are some of the things I would think about. Hydration would be really helpful. So I would just start with those things. And of course, if it’s restless leg, then figuring that out and doing what Dr. Mirla said.

Avila: What have you heard about Epsom salt? Have you heard that taking a bath — but obviously not too hot because we don’t want to do a hot bath with MS, but we can have a warm bath with Epsom salt — sometimes that can help too.

Payrovi: Yeah, I’ve actually looked into the literature on Epsom salts because it comes up all the time. I have patients who use it, they love it. There’s not a lot of data because there are claims that it can actually help replete or increase our magnesium stores. I don’t know the answer to that because the data is all over the place, but I think it can be actually really helpful. It can be very relaxing of the muscles.

Again, you want to be really careful when you get out of the shower because your blood vessels are dilated. You’ve been sitting in the warm bath, you want to make sure you don’t fall over. So great, great advice, Dr. Mirla.

Avila: Yes. So our last question is from a caregiver, Steve, and he says, my wife has had multiple sclerosis in the past. She has been able to deal with the limited amount of sleep and go about her day. Lately, she can no longer function, making it difficult to care for our two young boys. She’s always tired and her sleep is never good. Her disease is actively progressing. Could this be a reason for her never-ending exhaustion?

Well, definitely. If she’s not sleeping well, for sure it’s going to worsen the fatigue. We already know — we did an episode on fatigue. We know that central fatigue is a big thing in MS, so definitely if you’re not sleeping, this can make fatigue worse. And I think here are several factors to see what would be the reason. I would say this patient should talk with a healthcare provider. Is she not sleeping because of stress? Can it be a bladder-related situation? Can it be spasms? Can it be something like sleep apnea?

As you know, sleep apnea can be common. And if you’re not reaching your REM sleep because of interruption, that actually can lead to extreme fatigue, but also can increase other risk factors, even stroke and heart attacks. So there are many things that we would need to identify in a patient like Steve’s wife to try to pinpoint what is the reason behind the lack of sleep.

Payrovi: Right. And as a functional medicine physician, other things I would think about would be like, what’s happening in the hormone system? Sometimes when people wake up early in the middle of the night, like that 3 a.m. awakening, that could be due to cortisol spiking earlier than intended in the middle of the night. And it might be inhibiting melatonin, so it’s preventing us from staying asleep. It’s a pretty common problem whether you have MS or not.

So the things that help cortisol would be stress management. Cutting down the sugars and simple carbs in the diet can also be really helpful, and putting into place a lot of different things that are going to help promote good sleep. The more you support the sleep system, the more you’ll help normalize that cortisol spike that happens overnight.

Other things I think about are like circadian rhythms. Is this person getting a lot of natural light early in the day? I usually tell my patients, get outside for 30 minutes before 10 a.m. You got to let your eyeballs and brain get flooded with light so your brain understands this is daytime, so that in about 12 hours it can start planning for nighttime physiology and slipping into good, deep, restorative sleep.

So I would want lots of light early in the day. And here’s the other one — dark in the room in the evenings. Even an hour or two before bed. You don’t have to have every light on. Start darkening the home, just low lighting. Stay off of devices to help the brain just understand that nighttime is here and we need to switch to a different kind of physiology.

And then I would also say things that can contribute to what Steve’s wife is experiencing would be a lot of stress. Stress impairs our ability to fall asleep and stay asleep. There’s a lot of stressors that we can’t remove. But if we can try to find better coping strategies, that can actually go a long way. And I think a lot of people just step back and look at their patterns — when they’re more stressed, it is harder to fall asleep and stay asleep versus when you’re on vacation. It seems to be a lot easier.

Avila: True. I would like to add to what you were saying with the light exposure to your eyes. If a patient has lack of vision because of old optic neuritis, sometimes that can interfere too. Or if somebody is blind because of optic neuritis or has only partial vision. And there are some medications particularly for that. So talk to your doctor if that could be the case.

The other thing I recommend patients is to avoid alcohol, because sometimes we have the impression that, oh, a little nightcap can help me go to sleep easier. And yes, you’re going to feel sleepy if you take a glass of wine or two, or alcohol. The thing is that it’s going to mess with your REM cycle, and then you’re going to wake up, not be able to go into your REM cycle, and you’re not going to have a restorative sleep pattern. So you’re going to be waking up in the night multiple times, and you’re going to be very fatigued the next morning.

So I would look into also that — if you are having alcohol, maybe don’t take alcohol and see if your sleep gets better. And that may be your answer.

Payrovi: Yeah, I agree. Like a two-week trial of laying off the alcohol might give you the data you need to be motivated to minimize it. All right. We have one more question from Matthew F. He says, I was diagnosed with MS when I was in college. I am now 29 and I have trouble holding my bladder and bowel overnight. I don’t have any problems with my bowel movements during the day, but at night I can’t make it to the restroom in time. This is an embarrassing problem and one I hesitate to bring up with my doctor.

Matthew, thanks so much for asking this question. I get it that it can be really embarrassing to talk about bowel or bladder incontinence or having accidents, but I can tell you, as a physician — and I’m sure Dr. Avila will agree with me — we think it’s really important to talk about these things. And to us it’s just another symptom that needs to be addressed. So to us it’s not embarrassing. I understand that it can be hard to bring it up, but please just know that we hear this from patients all the time, and it’s just part of our job to listen and to try to give you support.

So this sounds — I don’t know that this is something that would respond to bladder training where, for example, you stop drinking liquids the last three hours before bed, you only do small sips as needed. When you wake up, you might want to hold off on running to the restroom for five minutes. And then over time, you can lengthen that time that you lay in bed before you run to the bathroom.

I don’t know that this is really what you’re dealing with. It sounds more like incontinence to me — where you’re losing your ability to hold bowel, urine and stool. So a couple of things just from a functional medicine perspective, integrative medicine perspective, I would think about acupuncture. There is data that acupuncture can actually help with bladder and urinary incontinence. So I would give that a try, aside from all of the behavioral things that I just mentioned. So, Dr. Avila, what do you think?

Avila: I would say with regards to the bladder, not all liquids are created equal. If you had a neurogenic bladder — and I want to talk about something personal — I have a neurogenic bladder because I injured my back when I fell from a horse when I was 13. So I have learned that certain things like diet sodas would really mess up my bladder. And it’s not only the day you take the diet soda that the effect continues, several days.

I would say go clean to only water for about a week or two and see if that makes a difference, because maybe it could be not only the amount of fluid, but the type of fluid that you’re taking. So if you’re taking sodas, if you’re taking a lot of teas, that could also increase the frequency. And if you already have a neurogenic bladder or a retention bladder that overflows, then that may be causing incontinence during the night. So that could be one example.

But yes, talking with your doctor — there’s nothing embarrassing. We’re used to these questions. These are important questions because they interfere with your quality of life. So always feel free to talk with your doctor. They may recommend you to see a urologist and maybe even a GI doctor to try to understand. There are some tests that can be done to see if your bladder is over retention, or what type of neurogenic bladder you have. Because there are also medications that we can take during the night to prevent these accidents from happening.

Payrovi: All right. Well, let’s now segue into actually really kind of digging into sleep, like the science behind MS-related sleep disruption and other symptoms that tend to crop up with sleep troubles. So, Dr. Mirla, tell us a little bit about the science.

Avila: So it is known that sleep disturbances are more common in MS than in the general population. And there are many factors that we have to take into account. The most common ones that we can say are related to MS per se are restless leg syndrome. Restless leg syndrome patients have this urge to move their legs once they are quiet in bed. They have these twitching. You feel a relief when you move your legs. It can be very uncomfortable. You can feel like pins and needles sometimes, like ants crawling.

Another example could be neuropathy. You may have neuropathy, and once you’re laying down in bed and you’re relaxed, it’s when you start feeling that nerve pain that can be very uncomfortable. Other things could be spasticity. Once you’re laying in bed, you may feel that your muscles are tightening and they may cause this spastic — that is not restless leg syndrome per se, but it is spasticity or tightness in your muscles.

And then another one that we frequently see is obstructive sleep apnea. This can be caused by MS per se, but it can also be associated to other comorbidities that could be overweight. It can be as simple as having some nasal congestion or sometimes your chin is smaller, just anatomically. And we need sometimes to do a sleep test to differentiate what it is and see if you qualify for a device that helps you breathe at night. If you tend to snore, wake up several times at night, that may be sleep apnea.

And the concern with this is that it can lead to other consequences like increase your risk of stroke, increase your risk of heart disease, and usually associated to other comorbidities like obesity or being overweight. So important again to talk with your doctor or your health care provider to find out what is the reason behind it.

Payrovi: Yeah, I think sleep specialists are underutilized. I think it’s always helpful to do a trial of behavioral strategies, which we’ll talk about here in a second. But don’t hesitate to seek help if you’re not getting good sleep. I mean, I can’t tell you how often I see patients with undiagnosed obstructive sleep apnea, which can be treated with a device to help you breathe at night.

And how important is oxygen? I mean, it’s crucial, right? And we talk about the mitochondria, the parts of the cell that run your body and create energy. They need oxygen. So it’s just such a foundational tool to helping improve not just sleep, but your ability to feel refreshed in the morning — to improve everything your body does.

So, as a functional medicine, integrative medicine doctor, I am really big on behavioral strategies, and I think they actually go a long way in helping people sleep better. There’s a lot about modern life that gets in the way of us getting good sleep. Staying up, looking at different media, having our electronics in bed and being lured in by Instagram or YouTube shorts.

I can’t tell you how many times I try to go in and turn on my bedtime yoga on YouTube. And the next thing I know, an hour later, I’ve been scrolling things that are completely meaningless because they know I’m going to look at those YouTube shorts.

So being mindful of our screen usage can be really, really helpful. So I want to talk about a couple of behavioral things. I have three main strategies for getting people to sleep better. And the first one starts the moment you wake up — you got to get outside and get light. I want you to flood your eyeballs with real natural light, rain or shine. Get outside and try to send that information deep into your brain.

We got to reset those clocks so that your body knows when to turn things on and when to turn things off. So 30 minutes by 10 a.m. is wonderful. In fact, if you are an early morning riser and you can catch the sunrise, only about 10 minutes of sunrise is probably enough to recalibrate those circadian rhythms.

And then I would also say regular physical activity, whatever that might look like for you. If you can run and do high intensity and you like that, please do that. If you’re much more limited, even passive stretching where someone helps you move your body parts can be really helpful. I have patients who use vibration plates where it causes your muscles to contract and release, and —

Avila: I just got one. I’m waiting for it.

Payrovi: I want to hear all about it. Oh yeah, because there’s some data that it can help fatigue as well. So I’m super excited about that as well. So we’ll have to talk about that later too.

Yeah, so any kind of physical activity, any kind of movement and trying to do that in a regular manner. And then a bedtime routine — I can’t tell you how many times people fight me on this, where it’s like they want to go from washing dishes, paying their bills, watching TV, to putting their heads down and go to sleep. And it doesn’t work because your brain hasn’t had a chance to shift into nighttime sleep.

So you got to give your brain a transition. A lot of this has to do with creating the right environment, quieting the house, darkening the house that last hour or two before bed, doing something relaxing, staying off of screens. I know you’re big on this, Dr. Avila. Because looking at that blue light actually stops the flow of melatonin. And we need melatonin to start orchestrating the onset of sleep.
So those are just some simple things to get started with. I mean I say simple, but I know they’re not simple. But if we’re being intentional about improving sleep, then here are the things we can do. They don’t cost anything. It just requires intention and planning.

And then sometimes it’s useful to use some natural supplements and herbs for sleep. There are many out there. Some of the most common ones are melatonin, magnesium. You know, lots of bedtime teas that are really easy, that it’s multiple herbs that can help you relax and feel sleepy. So these are some of the things I would start with.

Avila: I agree. I agree. So let’s talk a little bit about the takeaway messages for today. So we spoke about the causes for having sleep disturbances, which can be stress, changes due to chronic illness. But we can do some things and there are behavioral keys that we can improve, just like the ones that you were mentioning, to have a better sleep.

Important to talk with your health care provider to address these sleep disorders. And you can also use some natural supplements and medications when they’re needed. And we actually have a PDF file that you can download and use. And it’s going to be different tips on managing MS-related sleep troubles.

Payrovi: Yeah, I think if you’re really serious about getting sleep to be better and more restorative, this is something you can just put up in your bedroom, the bathroom, wherever you’re going to look at it and just start really dialing in these different tools.

So thanks again for watching. Don’t forget to check the show notes for that free download on how to manage your sleep troubles. And remember to always talk to your health care provider for any changes to your diet, supplements, or medications.

Avila: Thank you everybody for being here.