Joey Wahler (Host): It's a condition that can disrupt sleep and adversely affect quality of life. So we're discussing Restless Leg Syndrome, also known as RLS. Our guest, Dr. Cameron Barber. He's a Sleep Medicine Physician with WakeMed Sleep Medicine. This is WakeMed Voices, brought to you by WakeMed Health and Hospitals in Raleigh, North Carolina.

Thanks for listening. I'm Joey Wahler. Hi there, Dr. Barber. Thanks for joining us.

Cameron Barber, DO: Hi, Joey. Great to be here.

Host: So first, what exactly is restless leg syndrome?

Cameron Barber, DO: So, Restless Leg Syndrome, also known as Willis Ekbom Disease, is a sleep disorder that's a clinical disorder. So, you diagnose it in the clinic based on symptoms. The symptoms are an atypical, unusual, uncomfortable sensation that is worse in the legs at night, worse with sedentariness or being still, and the hallmark is improves with movement, such as kicking your legs or getting up and walking around.

Host: And so the cause is usually what?

Cameron Barber, DO: We don't entirely understand the full cause of restless legs. We understand that it is associated with iron. So we found that 40 to 60 percent of patients that end up having low iron from a sleep standpoint, do get significant symptomatic improvement with getting their iron levels up.

Host: Now, when you say that, it makes me think of the fact that a few years ago, I would occasionally get a terrible cramp in one of my calves when I was laying around. And I found that by taking a daily vitamin, that it got rid of that, but we're talking about something more dramatic here, right?

Cameron Barber, DO: Yes, it sounds like what you're talking about can be considered nocturnal leg cramps. That is, more or less just a simple muscle cramp. A lot of people do find relief getting vitamins or nutrients or minerals either from mustard or a multivitamin. And stretching also has been found to help those cramps. But this is more of a smoldering sensation that just doesn't go away. And it's really worse when you sit down and stop doing anything. So you can see people in an airplane walking up and down the aisle because they just can't sit still for hours at a time.

Host: So it's not just because they're waiting to use the bathroom or whatever.

Cameron Barber, DO: No.

Host: So if untreated, how can this affect someone's daily life?

Cameron Barber, DO: So it really just interrupts with sleep. Moderate and severe restless legs can affect the time that it takes you to fall asleep, resulting in essentially a level of insomnia, which can result in sleep deprivation. And you just feel unrefreshed and sleepy during the day. If you're just not able to get the hours of sleep that your body needs, you're just not going to function a hundred percent.

Host: So at what age could someone be diagnosed with this?

Cameron Barber, DO: This is one of those disorders that really can affect all ages. When I was in training at the children's hospital, I saw young preteens, and I've seen people all the way up into retirement age. This is a non discriminatory disease. It does seem to affect five to 15 percent of adults with a European or North American ancestry more.

But it affects all ages. I hear a lot of the time that women seem to get this after pregnancy. And that makes sense with the low iron. So they end up becoming anemic from the pregnancy or some form of blood loss, but they go years without really discussing it with any medical provider.

I happen to see them for some other instance. I ask them about restless legs and they say, Oh yeah, I have had that for five or 10 years.

Host: And yet they live with it for a while before getting it checked out.

Cameron Barber, DO: Correct. Because unfortunately, it's something that occurs at night in the privacy of your own home. It doesn't really disrupt the rest of the world. So people don't notice it. Your spouse might not notice it because you just get up and out of bed and quietly walk around and aside from preventing you from falling asleep, it doesn't really impact things in a visible way that doctors seem to ask about. So unless you're directly asking about it, it can easily go missed.

Host: Interesting. So, what are the risk factors for RLS?

Cameron Barber, DO: The risk factors would be iron loss or any anemia. Those can definitely seem to precipitate restless legs, but otherwise it's more of a genetic thing. Females have a higher predominance for restless legs as well as European ancestry.

Host: And how is it typically diagnosed?

Cameron Barber, DO: So it's diagnosed in the clinic. It's diagnosed by finding it atypical or what I say is often creepy crawly sensation that's located in the legs. It's temporally worse at night. It's often worse with the evening or going to bed. It's worse with sedentary activity. So stopping doing something like movie theaters, airplanes, watching TV or movie on the couch or crawling into bed, and the hallmark being the fourth one is getting improvement specifically with movement, kicking your legs, walking around the room. You just, overall your legs feel restless.

Host: And so, how is this typically diagnosed in terms of what can people expect when you're checking them out?

Cameron Barber, DO: We go in and I take a clinical history, either you have had restless legs and you've been on medicines before or you haven't. But I always tend to ask the same questions. When it started? How bad was it? Mild, moderate, or severe? How many days a week does it occur? How many minutes does it take to develop the symptoms from the time you crawl in bed. And then I also like to know, does it ever wake you up overnight? Do you get symptoms in the middle night after you go to the bathroom and come back to bed? Do you get symptoms in the morning before you get out of bed? Do you ever get symptoms during the daytime?

Does it ever occur in your arms? And this helps me gauge the severity. And then I ask those similar questions now in the last two weeks or month, how has that gone? If you were on medications, what were those medicines that helped? How have those doses evolved or changed over time? Have you increased the dose of medicines?

So Restless Legs again is a disorder of low total body iron. So oftentimes I find that patients had their iron checked by some doctor in the past and they said, Hey, all the labs were normal. And when you look at it, the labs have a reference range that says the iron is normal, but those reference ranges or what normal values are, are based off hematology or red blood cells.

So they're asking the question, do you have enough iron in your body to manufacture red blood cells? However, from a sleep standpoint, a ferritin, which could be normal, depending on anywhere above 11 to 20. If it's less than 75, we want to get it above 100 in adults. And if it's less than 50 in pediatrics or children, we want to get it above 50.

So it can be completely normal and we say that it's low. Also, you have to look at the saturation because ferritin can also be falsely elevated. So sometimes people have had half of a workup before and they didn't realize that there's a targetable treatment right in front of them that can avoid long term medications.

Host: Interesting. So any at home treatments that can help lessen the symptoms of this?

Cameron Barber, DO: Yeah, so since restless legs is worse with being sedentary, if we can appropriately time sleep, being able to crawl in bed and fall asleep faster tends to help minimize the burden of symptoms. If you crawl in bed and watch a movie and two hours later try to fall asleep every night, you're just asking restless legs to get worse and to show itself.

But if we crawl in bed and we fall asleep quick, that can help. People find that stretching or aerobic exercise before bed sometimes helps basically kind of work that restlessness out before bedtime. There's even some anecdotes online where people seem to subscribe to having a bar of soap in the bedsheet. But realistically, properly timing sleep and treating your iron, if it is low, are the best options for restless legs prior to really starting with prescription treatment.

Host: And so in terms of trying to get to sleep sooner, sounds like you're saying you have to kind of wait out the RLS, right, kind of beat it to sleep.

Cameron Barber, DO: Correct. You want to be able to fall asleep before your restless legs comes on. If it takes you 15 to 20 minutes to develop restless leg symptom, if you get sleepy enough so that you'll fall asleep within five minutes, then hopefully you won't have those bad symptoms. Another thing that you can do at home is simply avoiding common triggers.

There's a lot of medicines that can worsen restless legs. A big one that's over the counter is actually Benadryl or generic diphenhydramine. That can certainly make restless legs worse. That's a component of Tylenol PM. So some people take Tylenol PM or Z-Quil or something like that to help them fall asleep at night and inadvertently, they're making their restless legs worse.

Host: Gotcha. So to back up for a moment, when's a good time to see a Sleep Medicine Specialist like yourself if you think you might be suffering from this? When do you kind of cross over that threshold where it's time to stop letting it go as you referred to earlier?

Cameron Barber, DO: I'd say anytime you feel it's actually impacting you. If it's impacting your ability to fall asleep, stay asleep, or you feel it's interfering with your day to day life, you absolutely should be seen. I never tell anyone that their restless legs isn't bad enough to see me. I always am willing to check iron, even if you have symptoms once a week or once a month.

Now there is another subtype of restless legs called augmentation. That's a rapid progressive worsening of restless legs. One of the medicines that we used to use was a mechanism of action or the way it worked was a dopamine agonist. So it promoted dopamine. The two generic pills are ropinirole and pramipexole or brands Requip and Mirapex.

We found that decades ago, these worked fantastic for restless legs and they really did. Unfortunately, over the years, we found that they led to a very, severe worsening of restless legs called augmentation, and the doses kept increasing, and you kept needing to need more and more of this medicine. Any patients that are taking significantly high doses of ropinirole or pramipexole, or experiencing augmentation, absolutely need to come in to see a sleep medicine specialist to talk about this.

And hopefully someone who has an interest or specialty in restless legs specifically, and I know the RLS Foundation has resources for that.

Host: So besides the things you've covered that people can do on their own, what treatment might you offer if those things haven't worked?

Cameron Barber, DO: Yeah. There's only four classes of medicines that can treat restless legs and a brand new device that was approved last year. The first treatment is iron, so ensuring that a patient's iron is adequate, making sure they've tried oral iron correctly, and if that's failed, we can always discuss an infusion of iron.

After that, you're talking about prescription medicines that are either every day or as needed. Those include medicines such as gabapentin or neurontin, and the medicines that I talked about that we try to avoid but often patients are on, ropinirole and pramipexole. I almost never prescribe those myself and most of my restless legs is focused on getting people off of those medicines.

The last class of medicines is actually opioids, which are used for augmentation and severe restless legs pain. It's safer than ropinirole and pramipexole. It does not result in augmentation, but it is a big conversation in the clinic. And now there's a really exciting device out there. It's called the NTX100 or Nidra.

It's by a company called Noctrix Health. They've not only found that using this device, which is a TENS unit that wraps right below the knee, and you have two treatment options, two charges of treatment over the course of the night. It's found in the studies to not only reduce the severity of restless legs over the course of months, but on another trial where they kept patients that had severe restless legs on opioids, they actually were able to reduce the dose of opioids. So this is really likely going to be a game changer in terms of targeting severe restless legs.

Host: So it sounds like there are a number of options there. In summary here, Doctor, what would you say to our listeners? What's your message about addressing RLS overall in terms of the hope for them to prevent it, to get rid of it, and to move on with their lives.

Cameron Barber, DO: I would say don't dismiss these symptoms. They do occur at night, often when you're alone trying to go to sleep. But that's worth talking about. Come in, see a sleep medicine specialist, talk about these symptoms. There are targetable treatment options. This doesn't have to be a forever medicine. Iron can be a short course and really get a lot of improvement.

And there are a lot of ways that we can make sure that restless legs doesn't get worse throughout the course of your life. So it's always worth a conversation just to make sure that we're doing everything possible, that we're not taking things like Benadryl that are making things inadvertently worse. We're here to help.

Host: Yeah, watch out for the Benadryl as part of the message as well, right?

Cameron Barber, DO: Yes. Yes. Watch out for the Benadryl. We're here to help. And we'd love to see you and see what we can do to help you.

Host: Sounds great. Well, folks, we trust you're now more familiar with Restless Leg Syndrome. Dr. Cameron Barber, thanks so much again.

Cameron Barber, DO: Thank you, Joey. It was great to be here.

Host: Same here. And to learn more about WakeMed Sleep Medicine Services, please visit wakemed.org. Again, that's wakemed.org. Now, if you found this podcast helpful, please share it on your social media. I'm Joey Wahler. And thanks again for listening to WakeMed Voices, brought to you by WakeMed Health and Hospitals in Raleigh, North Carolina.