Restless Legs Syndrome: Triggers, Home Remedies and Treatment with Dr. Andy Berkowski

Podcast Transcript

Cassandra Holloway:

Hi, thanks for joining us. You're listening to the Health Essentials podcast brought to you by Cleveland Clinic. My name is Cassandra Holloway, and I'll be your host for this episode. We're broadcasting virtually as we are practicing social distancing guidelines during the coronavirus pandemic. We're joined virtually by sleep expert Andy Berkowski. Dr. Berkowski, thanks for being here. And welcome to the podcast.

Dr. Andy Berkowski:

Thank you. It's my pleasure.

Cassandra Holloway:

So for someone who's never experienced restless legs syndrome before, the disorder might kind of sound a little bit baffling or a little bit mysterious. But for those who suffer from it, they know all too well just how frustrating and intense it could be. Say we're discussing restless legs syndrome. We'll talk a little bit about the physical sensations that go along with it, the triggers, some of the causes. And we'll do our best to provide listeners with tips and advice for managing this condition. And also, when it might be time to see an expert. Before we dive into this full episode, we just want to take one moment and remind listeners that this is for informational purposes only, and is not intended to replace your own doctor's advice. Also, this interview was prerecorded and does not reflect any changes to COVID-19 precautions that may have been made after the recording. So Dr. Berkowski, I want to first start off by asking if you'll tell us a little bit about your practice at Cleveland Clinic and the types of patients you typically see.

Dr. Andy Berkowski:

So I'm a neurologist by training, but I practice exclusively at the Sleep Disorders Center at the Neurological Institute at the Cleveland Clinic. And I see exclusively patients with sleep disorders. And it's a fairly narrow field, but very common in terms of the diagnoses and treatments that we administer. And most patients in a sleep disorder center are going to be, with obstructive sleep apnea and insomnia are going to be the two most common. But I specialize in the previously mentioned restless legs syndrome. So a significant portion of my patients, perhaps maybe a quarter to a third have very severe symptoms of restless legs syndrome. And that's my personal sort of sub, subspecialty within sleep medicine.

Cassandra Holloway:

So let's start off with the very basics then. Can you tell us what exactly is restless legs syndrome?

Dr. Andy Berkowski:

So yeah, it could be a perplexing disorder if you haven't experienced it or you don't see patients with it. But restless legs syndrome is exactly what the name describes. It's this unpleasant feeling in the legs. It's really a restlessness of the legs that people experience. And it's fundamentally an urge to move the legs. And it's really not a leg disorder per se. It really is occurring in the brain, and the parts of the brain that actually feel the legs themselves. So it's really a brain disorder, a neurological disorder. But it typically affects people at nighttime, and it's this unpleasant sensation where people have to move their legs. And then sometimes, it prevents them from falling asleep. And other people, it can be quite distressful in situations where they can't move their legs to relieve those sensations.

Cassandra Holloway:

So when you mentioned that these patients who have this condition feel restless and they need to move, what exactly does that mean? Is there pain involved in that? Is there itching or pulling? Explain to me a little bit about, more about the symptoms that people complain of from this disorder.

Dr. Andy Berkowski:

Well, a lot of times it's very hard to describe because it meets the criteria for a pain syndrome or a pain condition technically. But it's not painful for most people. There are certain variation of it where people do experience what they would describe as pain. But they say it's just an uncomfortable, undescribable sensation. Maybe bugs crawling on their legs, or feeling like they want to explode from the inside. But it's not really something that you can explain that patients have an easy time explaining, because it just doesn't have a corollary to anything. So just the fact that you can't really explain what you're experiencing might be the fact that you have this condition.

Cassandra Holloway:

Does it happen exclusively only in the legs, or can it happen in other parts of the body as well?

Dr. Andy Berkowski:

Typically, it affects one leg or both legs. But many times, particularly if the condition gets worse or becomes very severe, it can spread to other parts of the body into the torso and arms. But primarily, the areas of the brain and the pathways that are affected cover the areas that feel basically the legs. So it starts off in the legs. It may spread to other parts of the body. But classically, it's in the legs, but not exclusively.

Cassandra Holloway:

So you mentioned that it typically happens at night. I'm wondering if, obviously this is a sleep disorder. But can it hit someone at any point of the day during inactivity say at your desk when you're working and not really moving a lot, or when you're driving your car?

Dr. Andy Berkowski:

Yes. And we may talk about this later, but there's a relationship to the body's biological clock. And the body goes through these cycles throughout the day. And it may correspond to iron levels in the brain. And iron levels in the brain may fluctuate at nighttime, which is why the symptoms start to come on at nighttime. But they can occur throughout the day as well, particularly during periods of rest or inactivity as you mentioned. We're recording this during the pandemic. So people aren't flying on planes anymore, but airlines are like a torture chamber for people with restless legs syndrome to be in a confined tight space for two hours without moving your legs. Those situations typically bring on the symptoms. So theaters, movies, flights, long car rides where you're not driving, these can be very uncomfortable. So it's a combination of inactivity and rest without movement of the legs, particularly confinement of the legs. But then also at nighttime, when people lie down to fall asleep at night combined with the fact that the symptoms are going to be naturally worse at night for most people on a regular sleep and wake cycle.

Cassandra Holloway:

I'm curious how common is it. Will most people experience it at some point or another during the duration of their life?

Dr. Andy Berkowski:

Well probably not everyone, but it's actually extremely common disorder. It's a common disorder that most physicians don't know much about it. And worldwide, it may affect up to 5 to 10% of the population, depending on what epidemiology literature you look at. But it tends to affect more Northern and Western European ancestry. There are a lot of genetic factors involved. But it does affect all populations, whether it's African, Middle Eastern, Asian, South Asian, but more so in the Western and Northern European ancestral lines.

              But interestingly enough in addition to the 5 to 10% worldwide, up to 20% of women during pregnancy can experience restless legs syndrome. So that's a significant number of people. And for most women who are pregnant, once they deliver. The condition may resolve. But that's a lot of people who will have had symptoms of restless legs syndrome throughout their life.

Cassandra Holloway:

Is there a certain number of times a night, or a week, or a month for someone to experience this condition that is a red flag that this might be the actual condition? What's the frequency estimate for experiencing this?

Dr. Andy Berkowski:

It can vary. There's a big curve in terms of the symptom severity. So there are people who can get it maybe once a month. There's some people who have it every night, and it's really severe. So there's a whole spectrum. And some of the studies show that in this 5 to 10% of the population that may have it, maybe 50% have clinically significant symptoms. Meaning that you may think if you are a patient, you might bring it to the attention of a doctor. Whereas half, it's just sort of a nuisance if you ask deeply about it, which we do in the sleep clinic. We take a lot of symptoms. Somebody might say, "Well once a month, I get this urge to move, but it really doesn't bother me." And usually we can just ignore those cases. So it depends on how severe it is to the person who's experiencing the symptoms.

Cassandra Holloway:

I think it's so interesting that you mentioned feeling this disorder it's oftentimes like in an airplane, like you said. Because I feel like you're already claustrophobic. You're already confined. You already want to be able to move, but you can't. And then for someone like me who I don't think I've ever experienced it before, I think back to be on an airplane. And I think maybe that was it. Maybe I have experienced it before. Maybe it's more common than I thought.

Dr. Andy Berkowski:

Yeah, it could be. And you can identify the people with restless legs. Because if they have it fairly severe, you'll go to some event, and they'll be in the back kind of pacing. And it's not because they don't enjoy the show or they're getting tired of being on the plane. It's because it's getting kind of unbearable. And the relief, which is fundamental to condition, the sensation is relieved with movement. So the movement sends some sort of feedback mechanism back to the brain to say, "Let's shut off that sensation." And that's why you'll see that the movement is also associated with the sensation in these situations.

Cassandra Holloway:

So talk to me a little bit about, obviously this is a sleep disorder. So sleep affects so many parts of our physical and mental health. How does this disorder affect who you are if you're not getting enough sleep and your performance during the day as well?

Dr. Andy Berkowski:

Yeah, so it sort of is a neurologic condition, but it's fallen in the sleep disorders category for a couple of different reasons. One is sleep medicine involves the body's biological clock. And this is something that is affected, like most things affected by the body's biological clock. And the symptoms happen to occur at night. So this can be what we call a dyssomnia, meaning it makes it difficult to fall asleep sometimes, or it can interfere with sleep. There are also associated limb movements, which are not as clinically significant now that we've done more research on. But there are these kind of kicking movements where a person who's asleep, their leg might pull away. Or a spouse or a bed partner might say they'll kick in their sleep. And these occur every 20 to 40 seconds. So people with restless legs syndrome often have these what are called periodic limb movements in sleep. So it's something that we can see on a sleep study. Not that we see restless legs syndrome, which is based on just symptoms. But we can actually see people with restless legs syndrome who have these limb movements.

              And the limb movements not necessarily are shown to affect sleep quality at this point. We don't think that they should necessarily be treated. But that's why it falls into the domain of sleep. Because there's a nighttime component, there's a disruption to sleep before you fall asleep or if you wake up during the night with symptoms and can't fall back to sleep because you're pacing the room or have to kick your legs constantly. And then even when you're asleep, you may be having these kicking movements that are occurring in your sleep. But sleep is really important. So if the condition becomes worse, it could actually prevent sleep quality. It can cause a reduction in one's sleep, and all of the bad effects that follow from that. So it's a problem in and of itself. And it could be a problem secondarily to one's sleep as well.

Cassandra Holloway:

Do we know what causes restless legs syndrome? I know you mentioned pregnancy. Are there any other triggers that listeners should be aware of that the actual causes of this?

Dr. Andy Berkowski:

Well, restless legs syndrome is not fully understood. It's mostly a problem that's occurring in the brain. There are a couple different chemicals, I guess you would call it, that are implicated in the condition. One of them, the main one is iron. And the element iron is deficient in the entire brain or in certain specific parts of the brain. And that's been well studied at this point. So people with restless legs syndrome actually have lower iron levels in their brain than people without restless legs syndrome. Even if their blood levels of iron like the iron you would get on a blood test, looks the same, their brain levels are lower. And if you increase their iron levels, their brain levels increase more slowly. So it's this deficiency of iron.

              There's also a chemical in the brain called dopamine. And that is maybe better known because it's sort of the pleasure, it's a neuro-transmitter. But it's a chemical in the brain that it reinforces pleasure. So when you eat fructose, or a cupcake or something, or with things like gambling, or alcohol, or substances that reinforce pleasure, dopamine is something that sends the signal from one brain cell to another. But in restless legs syndrome, the shipping ports where the dopamine is received by one brain cell called the dopamine receptor, they seem to be defective. So some of the medications that involve dopamine coincidentally were found to help with symptoms of restless legs. And interestingly enough, there's a deep relationship between iron and dopamine in the brain. Because dopamine, it's manufactured with the use of iron, and it's transported with the use of iron inside of the brain. So there are a lot of complex relationships between iron and dopamine. But it's primarily a condition that's caused by low iron levels.

              So a long-winded way of answering your question is that any condition that will lower someone's iron levels can cause worsening of restless legs or actually bring on the condition. Whether it's bleeding from some condition that causes blood loss, or not getting enough iron in one's diet, or different conditions that cause people to not be able to take in iron into their body. When I mentioned pregnancy, it's because of shifts of iron. Maybe the baby is stealing all of the iron from the mom, and there's less of it for the brain. That's the best theory we have on why it occurs during pregnancy due to the reduced iron levels to just grow a human life. So there are a lot of situations that can make this worse.

Cassandra Holloway:

Is there a genetic or hereditary component of restless legs syndrome?

Dr. Andy Berkowski:

Yes. So I mentioned kind of the Northern Western European ancestry. Not to get deeply into genetics, but there are certain gene variants that put people at greater risk of developing restless legs syndrome. And again, the most common ones are related to the function of iron in the brain. And some of them, even the function of iron and dopamine.

              So it's not like you can inherit a gene and you'll be guaranteed to get it. But you're certainly at higher risk if you have some of these genes. And some of them are available on these commercially administered tests that are on the market now. So some people will come and say, "I've got this gene," and it makes sense that they have one of the genes that put them at higher risk for restless legs syndrome. And it does tend to run in families, because families share the same genetic risk factors. But it's not a strongly inherited gene where you're guaranteed 50/50 to get it if your parent has it. But it does tend to run in families at times.

Cassandra Holloway:

And what about medications? I know you kind of briefly touched on this. Are there any medications that might cause restless legs syndrome as a symptom of that medicine?

Dr. Andy Berkowski:

Yes. A lot of the ways we deal with restless legs syndrome is making modifications to one's lifestyle, but also looking at can it be triggered by other medications that people may be on? And I call them kind of the anti-drugs. All the anti-drug seem to make restless legs worse, which are antidepressants, antiemetics, which are medications you would take for nausea. Anti-psychotic drugs that are used for some psychiatric conditions. And anti-histamines. So the over-the-counter drugs for sleep for example. Somebody with restless legs syndrome might take an over the counter sleep aid, which is actually an anti-histamine. And instead of falling asleep, their restless legs gets worse, and it makes it harder to sleep. So a lot of the medications that are prescribed for other conditions can trigger restless legs. They typically don't cause really severe restless legs, but that can be enough for somebody to say, "When I take this sleeping pill that I got at the store, this triggers my restless legs." And that's a very common situation. So we try to have avoidance of those triggers. And then all of the natural vices, whether it's nicotine, alcohol, or caffeine, those can also be triggers of restless legs syndrome as well for each individual. It's going to be a little bit different.

Cassandra Holloway:

Wow. That's so interesting to think that an anti-histamine or a sleep medicine could actually have the adverse effect and cause more restless legs syndrome symptoms, I guess.

Dr. Andy Berkowski:

Yes. Some of the common ones, Trazodone is one that is a prescription drug. It's really an antidepressant, but it's most commonly used to help people sleep during the night. And that can be a trigger. And one called quetiapine, which is an anti-psychotic that is sometimes used for sleep. These can also be mild triggers. And then many people are on antidepressants. This isn't advice to go off your antidepressant, but a little tweak here or there with certain medications can make a difference with maybe annoying symptoms of this condition without getting into medications to actually treat the condition.

Cassandra Holloway:

So speaking of depression or anxiety, and stress is everyone's favorite topic right now. Obviously with the pandemic and just feeling just stress throughout your life, I'm curious if maybe you only experience restless legs syndrome during times of stress, or when you're going through something, big life changes. Is it common to kind of have restless legs syndrome come and go throughout your life, especially during periods of stress?

Dr. Andy Berkowski:

Yes. And it could be a bi-directional relationship. Because people with restless legs syndrome, not everyone, it's a very common condition. But tend to be a little bit more prone to different levels of anxiety. But the anxiety is something, it's a survival mechanism in the brain. So when somebody becomes anxious, it's historically in our evolution is to fight off a bear, or run away from a bear, or kill a bear to eat the bear. So it was kind of activating our fight or flight mechanisms, our sympathetic nervous system. And when that gets active, our sensations may change as well. So we may be more acutely aware of our surroundings, including the sensations within our body and conditions. Whether it's migraine headaches or pain conditions, restless legs syndrome will get worse. Particularly now in terms of times of stress.

              And then you have indirect relationships where it's well, if you're under a lot of stress, you're not going to sleep well. If you're not sleeping well, you're going to be lying in bed for your legs to get more and more restless. So a lot of these situations will feed on each other. And there's kind of an inner relationship between the stress and the restless legs. And the restless legs can provoke anxiety and stress if it's something that's very uncomfortable and preventing someone from falling asleep. Certainly.

Cassandra Holloway:

It's all connected. That's why we always say get your stress under control. It affects so many aspects of your life.

Dr. Andy Berkowski:

Right, yeah. We're an integrated person. There's not just the brain and the legs. You can't separate your brain, your nerves from the rest of your body. You're one whole person, and it's operating together as one unit.

Cassandra Holloway:

Absolutely. Okay. So how does age play a factor in this? Does it typically affect one age group?

Dr. Andy Berkowski:

Well, that's a tricky question. restless legs syndrome is more common as one gets older. So in terms of the population of people, as people age, there's increased levels of restless legs syndrome among people. It's not clear that it's due to aging itself, but it could be due to the fact that more medical conditions are occurring that might provoke restless legs over time.

              In women, it's definitely something that may have two peaks. One peak could be during when women have menstrual cycles and are losing a lot of blood, and then it may get better after menopause. Yay menopause, maybe one benefit to it. And then after menopause, as women get older, it might get worse because there are just more medical conditions involved. But in general, it is associated with aging. But maybe not due directly to aging, but maybe the chances of having just more conditions, more medications, more disruption to different processes that are going on in the body. But yes, it does even happen in children. And it can be very difficult to identify. It's probably not identified well in children, just because children just don't have the tools yet to describe it. Or it's kind of brushed off as something like being fidgety or not sitting still. When it's actually this maybe neurologic phenomenon going on. But it's starting to be more recognized in children, but it does occur we think at all ages potentially.

Cassandra Holloway:

So I want to get a little bit into treatment now. And I want to start her off with some home remedies or strategies for restless legs syndrome that listeners can try. Do you have any recommendations?

Dr. Andy Berkowski:

Well yeah. I mentioned some of the important things are limiting some of the things that we tell you to limit for other reasons where it's do not drink caffeine excessively, quit smoking or use of nicotine, reducing the amount of alcohol that one drinks particularly close to bedtime, because it does disrupt sleep quality. But also, it can also trigger restless legs syndrome. A lot of habits that are just good, healthy habits during the day are also helpful. So activity tends to be helpful for restless legs. However, there's some bit of a U-shaped curve. So basically there's a paradox whereas sometimes very, very vigorous activity tends to make restless legs worse for a lot of people. So they may go for that nice bike ride and they feel better at night on the days they've gone on the bike ride. But they bike for 50 miles, their restless legs bothers them at night.

              So we know inactivity is not good for symptoms of restless legs, and sometimes vigorous activity, high-intensity activity may not be great. But definitely there's a sweet spot for some individuals with at least moderate activity. Whether it's in the moment, a walk before or around bedtime. But those are some habits that can help. And then stimulation to the legs themselves, even though the problem is not primarily in the legs. The stimulation to the legs somehow shuts off the loop of sensation, sort of like scratching an itch. So warm baths, heat, cold compresses. There have been products on the market, whether it's things that vibrate, vibrating pads. Or pressure wrapped devices that are available that can for some people provide some sort of stimulation to the feet or legs that will help shut off that sensation that they're experiencing. So a lot of things can be done without even resorting to any type of doctor or medical treatment at that point.

              And speaking of terms of home remedies, what are things that people can take over the counter? Well, there's really not a lot of evidence for things to take other than one thing which I had mentioned before, which is iron. However, I would not recommend that somebody with restless legs just blindly take iron. Because iron is a finicky substance. Even though it's over the counter, you can't just take iron. There's a quantity and amount that's appropriate based on the blood levels of iron. Because if you take too much iron, it could actually be counterproductive and it can cause problems in the bowels. So if you were thinking that your symptoms are bad enough that you would want to take iron, you'd probably want to talk to your doctor about it and get your iron levels tested. And based on those levels, your doctor can recommend a particular amount of iron that would be helpful. But iron would be the most common over the counter remedy that has a lot of evidence behind it in terms of treatment use. And that's really our first line treatment as physicians.

Cassandra Holloway:

I want to go back a little bit to some of the products you have mentioned. What about, you hear so much about weighted blankets and if they're good for you. Would you recommend someone who's suffering from restless legs syndrome try a weighted blanket for their legs?

Dr. Andy Berkowski:

Yes. So that one obviously, or not obviously, to my knowledge, it hasn't been studied in any way for restless legs syndrome. But in terms of what I tell patients is it could be a double-edged sword. Because one, the weighted blankets are going to prevent movement because you have something heavy on the legs. So some people, it may be unhelpful to them. But for other people, maybe that pressure and the weight from the weighted blanket could provide some stimulation to the legs that might replace that need to move the legs to relieve that restless sensation. But I would leave that up to the individual. The weighted blankets have many different effects, whether it's physical or even psychological effects, like emotional effects on just having ... some say it's like being wrapped up, like you're wrapped up in the womb when you were an infant kind of thing. So there are a lot of benefits to things like the weighted blanket, but I would leave it up to the patient to decide on that. We don't have evidence to say yay or nay to that as a home remedy for these symptoms.

Cassandra Holloway:

Sure. Sounds a little bit kind of a trial and error, what works for you, what improves your symptoms at that point.

Dr. Andy Berkowski:

Right. And that would go with anything related to sleep and relate to restless legs. Because if the warm bath gets your legs too warm and you feel like it's starting to get them moving, you probably don't want to take a warm bath. But for most people, that tends to work. But whatever works for the individual is what we want to have. Because it's a very kind of a subjective condition where if the symptoms are relieved, we're happy with that. There's no way to quantitate the level of symptoms. So we can't say, "Well, you need this much of a bath." I mean if the bath works, take a bath. If it doesn't work, if you want to take a cold shower, take a cold shower. But it really is going to depend on each individual. People are so different in their responses to a lot of these habits or home techniques as to how to address their symptoms of restless legs.

Cassandra Holloway:

So I feel like with restless legs syndrome, you always hear about the iconic sleep with a bar of soap under your sheet. Is there any truth to that? Is it a wives tale, or does that actually help improve your symptoms?

Dr. Andy Berkowski:

Again, that one might be more of what we would call a placebo effect where the thought of having the bar of soap that's doing something may be evidence. I don't know of any evidence or any studies on the bars of soap. Sometimes, restless legs syndrome gets confused with leg cramps that can occur at nighttime. And that's more of a muscle situation. That's not in the brain. It's actually in the muscles where cramps develop. So some of these home remedies that have occurred over years are often to address leg cramps instead of restless legs syndrome. But it's important to distinguish those two. Leg cramps are a little bit more difficult to identify and treat, because it can be caused by many different things. But those are going to be kind of a stiffening or a pulling of the muscle. And I've heard the bar of soap for all of these conditions. But again, that's not based on evidence necessarily even. I haven't had anybody have much success with that in terms of patients reporting this to me.

Cassandra Holloway:

So obviously, home remedies have their limits, and they can only go so far. So I'm wondering when should someone seek care for restless legs syndrome? How long is too long to suffer from this?

Dr. Andy Berkowski:

Yeah. So restless legs syndrome, it's sometimes associated with different long-term conditions in terms of cardiovascular disease. There's maybe an increased risk of cardiovascular disease, for example. But it's not necessarily a cause and effect relationship. It's just what we call an association where some of these things kind of come together. But there's really not great evidence to say that restless legs syndrome has to be treated. So right now, the general consensus is that patients treat their symptoms based on how much the symptoms are bothering them. And when I would say to go to the doctors, if symptoms are starting to get worse, they're starting to affect your ability to fall asleep. If you're extremely uncomfortable, or have a lot of discomfort with these activities we used to do like go to the theater or go onto a plane. If it's causing a lot of distress in your life, that's when you would want to talk to your doctorate.

              And maybe check your iron levels to make sure your iron levels are not low. But you don't necessarily have to feel the obligation to treat it. It's not like another condition like high blood pressure or pre-diabetes where you have to make changes or there's going to be long-term side effects 30 years from now, even if you don't have symptoms now. So it's not something we do for preventative reasons.

              And again, I want to emphasize that these leg movements that occur while you're asleep if you have restless legs syndrome, there is no good evidence to say that those should be treated either. So if you happen to have a sleep study and the doctor says, "You have these periodic limb movements on your sleep study," that doesn't mean you should run out and go get medications for restless legs syndrome. So I want to caution people, because that does happen a lot where something's identified. And if you identify it, you've got to treat it. That's not this case. Just because you have it, doesn't mean it needs to be treated. And I would typically leave that up to the patient to decide on that. Of course, if they're coming to see me, then they already have symptoms enough that they're going to bring it up with me. But if I happen to be screening for the condition and identify it among one of my sleep center patients, I will tell them that, "Hey, if it gets worse, we can check your iron. But otherwise, don't worry about it."

Cassandra Holloway:

Sure. So I'm curious then if someone is really severe in the disorder and it's really affecting multiple areas of their life, and I understand not every symptom of this needs to be treated. But if it does, who should they start off with seeing? Do they reach out to their primary care doctor? Do they see a neurologist right away? What's that first starting point?

Dr. Andy Berkowski:

Yeah. So if I were recommending it to a patient, I would go see their primary care doctor first. The knowledge of restless legs syndrome is variable among primary care physicians because it's sort of a neurological or a sleep disorder. But it's so common, that many primary care doctors will at least know the initial aspects, which is usually to check iron levels in the blood, or at least look at the hemoglobin, which is the measure of one's blood count. And if the hemoglobin is normal or low normal, then you would move on to checking an iron level. Because the hemoglobin could still be normal, but the iron levels might be a little bit low for restless legs syndrome.

              So that's the first step. And if the primary care doctor is uncomfortable, typically they will send you to a sleep specialist. And the sleep specialists tend to be the realm. Though some neurologists do treat restless legs syndrome, it's primarily fallen under the specialty of sleep medicine. So that's where the primary care doctor will typically refer patients to a sleep center. And most sleep centers should be good at managing this condition, evaluating and treating it. But I would start with the primary care doctor. Because if it's something as simple as somebody has anemia and they have a condition where they're losing blood, just addressing that condition, treating it, and getting the iron levels up might be all that they need. So it could be another condition that the primary care doctor can identify that's triggering the restless legs syndrome.

Cassandra Holloway:

If you do find yourself meeting with a sleep specialist because of this disorder, is an overnight sleep study usually recommended? Is that kind of the typical course of treatment for how you go about diagnosing a more severe case?

Dr. Andy Berkowski:

Well restless legs syndrome, there are no objective tests for restless legs syndrome. There's nothing abnormal on an examination. So unless your doctor is trying to distinguish between another condition that they're not sure about, they can probably do it by just how you describe the symptoms. And those are some of the symptoms we discussed at the beginning. But in a sleep disorder center, they would not necessarily order a sleep study.

              Now a sleep study may show these periodic limb movements maybe 70, 80% of the time, maybe up to 90% of time if you've had multiple sleep studies with restless legs syndrome. But the sleep study itself is meant to diagnose other sleep disorders, particularly obstructive sleep apnea.

              So when the sleep center is screening a patient for restless legs syndrome, if they happen to think that there might be another cause of sleep problems or a condition like obstructive sleep apnea which is a problem in the throat where the throat is collapsing during the night, which causes a snoring sound and the brain to wake up frequently during the night, that's something that they will order a sleep study for. But it's not required for the diagnosis of restless legs syndrome.

              So right now, and we may touch on this later on. But telemedicine is a great way of seeing your doctor during the pandemic, because it doesn't require any examination or tests unless you of course need a blood test. But just talking to a doctor, they may be able to help identify this condition for you and recommend some sort of treatment plan even without having to lay a finger on you.

Cassandra Holloway:

Yeah, absolutely. Always a good point to mention virtual appointments and just how accessible the pandemic has made seeing a healthcare provider. So I know we talked a little bit about treatments. We mentioned checking your iron and maybe using an iron supplement with the help of a doctor or healthcare provider. We talked about some of the lifestyle changes and things that you could do. Are there any other treatments for this that a physician would recommend for a patient?

Dr. Andy Berkowski:

Yeah. So if it gets to the point where iron levels have been tested and they seem to be at goal, sometimes patients even with normal iron levels, they can get what are called IV iron infusions, where iron is given directly into the bloodstream. And the iron levels go up very high, which is higher than they can be if you just take iron through your diet or through supplementation. So that's going to become a new treatment. That one's not typically covered by insurance as frequently, because it's a relatively newer treatment. But that's sometimes available at certain centers to get an iron infusion. And that's based on a lot of clinical evidence. So that would be one step you could take before you even consider medications. But that one, there's going to be barriers for you as an individual to getting an iron infusion.

              The first-line medications though, if the doctor decides, "Well, this is a time to start medications," they would fall into the class of nerve pain or seizure medications, kind of drugs that have been repurposed, that have been used for seizures or nerve pain and now are used for restless legs syndrome. One that is FDA approved is called gabapentin enacarbil. There's also one called regular gabapentin. And then one called pregabalin. Those are the three main medications. And these are the clinical consensus is that these are now the first line medications for restless legs syndrome.

              And the majority of patients who have never been treated for restless legs syndrome if you have iron and then you have these seizure medications, those are mostly as far as you would ever need to go to have your symptoms under control. It's pretty rare to need anything more. But there are two other classes of drugs for restless legs syndrome. One are actually opiate medications or narcotics. So medications like buprenorphine or methadone. And these are classic, what we call pain medications. Sometimes, these are considered as second line or third line for restless legs syndrome. But they're typically reserved for extremely severe cases of restless legs syndrome. And most people would not need to ever resort to an opiate medication for restless legs. But it is actually the oldest treatment, medication treatment for restless legs. It was first described in the 17th century for a noble woman in 17th century England when restless legs is thought to be first described in the medical field. And they gave the patient the opium plant. So that would be probably my second line as a physician.

              And then what I would describe as third line, but is actually very commonly used, are medications called dopamine agonists. And are a couple of the ones that are FDA approved, there are two pill forms that are FDA approved, which is ropinirole and pramipexole using the generic names, and then a patch called rotigotine.

              Now these drugs were all FDA approved for restless legs syndrome. But now with 20 years of use, it has been shown that they actually worsen the condition. So I'd mentioned dopamine, there's a problem with the dopamine shipping port inside of a brain of someone with restless legs syndrome. But with the use of these medications, it causes changes in the brain. And we think there's an alteration in the shipping ports where these shipping ports start to close down. And it causes this condition called augmentation, which anybody with restless legs syndrome should know about. Is that if they've been on these drugs for maybe several months to many years, the condition will gradually worsen. And it's now thought that this is inevitable. So if you're on the medication long enough, or if you're taking a high enough dose of the medication, the condition will gradually get worse with time.

              So now, the recommendations are not to use these medications, which used to be first-line are no longer considered first-line. And a lot of specialists in this area including myself. This is not a consensus, but I will not start someone on a medication that will inevitably worsen the condition potentially because it could be a lifelong condition. And you don't want to use a short-term treatment that's going to make things worse in the long run. So philosophically, I'm opposed to these medications even though they're FDA approved. But the FDA approval process doesn't last for 10 years, it's a short term. And now with 20 years of experience, I would very, very caution people to think twice before starting one of these medications because of that long-term risk.

Cassandra Holloway:

Absolutely. And I just want to clarify for listeners, so medications at this point, especially provided from your healthcare provider are second or third line defenses to restless legs syndrome, correct?

Dr. Andy Berkowski:

Yes. So the first thing is do you even need the medication? Because all of the three or four classes that I've described, they all come with potential for a lot of side effects. And you don't want to have any type of treatment where the treatment side effects are worse than the condition themselves. Because again, this is not high blood pressure where it's going to cause other things to get worse in 20 years, or in 10 years. This is a condition that you're just treating symptoms of. It doesn't need to be prevented necessarily. So to take a lot of these medications like the nerve pain medications, and the opiate medications, and the dopamine medications, you don't want to have long-term side effects from these drugs if your symptoms aren't really that bad. If they are that bad, we have the drugs there. I'm not saying not to take the drugs. But again, taking the medications I would say are third or fourth line. Compared to all of these different lifestyle modifications, even things to improve levels of inflammation in the body, weight loss, things that will generally make your body healthy, tend to make restless legs syndrome improve as well. Improving diet, increasing amount of iron in your diet. Those things should be the first approach. We shouldn't necessarily jump to a medication just because the condition is there. And then we can avoid some of the side effects of these medications.

Cassandra Holloway:

Absolutely. So the last thing I want to ask you about today is just your general advice for why listeners should still seek care for restless legs syndrome, even when we're going through a pandemic.

Dr. Andy Berkowski:

Yes. So again, if the symptoms of restless legs syndrome are distressing, or they're causing particularly sleep problems where you're lying down and you're unable to sleep because you got to get up and move or you've got to keep kicking your legs, that's going to have a cascade of effects on your body. Because poor sleep quality, sleep deprivation, that can lead to all sorts of different problems throughout the entire body. And even just the emotional stress of we have enough to deal with the pandemic, that we don't need to add emotional stress of having to just try to overcome this sensation that's really bothering you and preventing you from doing what you want to do or sit still for a period of time. These things can be addressed in a medical way. Again, this is not going to require major surgery or any type of hands-on intervention. We have virtual health available. Many insurance companies are still providing it and will probably provide it forever at this point. So it's a good time to seek care. It can be done in a safe fashion. This is sort of my office that I see patients in more than 50% of the week. And most of the patients with restless legs see me through this camera that you're watching me through now.

              So it is something that there's no reason to delay care. This can be addressed without having to be exposed to a hospital or clinic setting. This can be addressed from your home. And there are many providers out there, whether it's primary care or a sleep specialist that a person can see and get the treatment that they need. And there may be other sleep conditions that often overlap that need to be addressed, particularly insomnia and sleep apnea as I mentioned before. Which both worsen restless legs syndrome. And those can be addressed separately at a sleep center as well.

Cassandra Holloway:

Yes. That's wonderful advice to end on. Dr. Berkowski, thank you so much for taking the time to speak with us and sharing your insight.

Dr. Andy Berkowski:

It was my pleasure to participate.

Cassandra Holloway:

For the latest news about restless legs syndrome, visit clevelandclinic.org/sleep. If you want to listen to more Health Essentials podcast featuring experts at Cleveland Clinic like Dr. Berkowski, subscribe wherever you get your podcasts from, or visit clevelandclinic.org/hepodcast. Also, don't forget to follow us on Facebook, Twitter, and Instagram at Cleveland Clinic, all one word, to stay up to date on the latest health news and information. Thanks again for listening.