Speaker 1: 0:01

Welcome to the Healthy Matters podcast with Dr. David Hilden , primary care physician and acute care hospitalist at Hennepin Healthcare in downtown Minneapolis, where we cover the latest in health healthcare and what matters to you. And now here's our host, Dr. David Hilden.

Speaker 2: 0:18

Hey everybody, it's Dr. David Hilden , your host of the Healthy Matters podcast and welcome to episode 21. Today we are gonna talk about something that you may or may not have heard of Pot syndrome. What is that? Well , we're about to find out And what is its relation to long COVID . Tell me out. I've invited Miranda Lankford . She is a doctor of physical therapy at Hennepin Healthcare and an expert in not only long covid but pots, which stands for Postural Orthostatic Tachycardia Syndrome. Miranda, thanks for being on the show. Thanks

Speaker 3: 0:49

For having me.

Speaker 2: 0:50

First of all, what the heck is pots?

Speaker 3: 0:52

So as you said, POTS stands for postural orthostatic Tachycardia syndrome, which means high heart rate with standing or positional changes. But broader scope, what it is, is it's a type of dysautonomia , so a nervous system related disorder, specifically when the autonomic nervous system becomes out of balance.

Speaker 2: 1:14

What's the autonomic nervous system?

Speaker 3: 1:17

The autonomic nervous system is the part of our body that tells the other body systems what to do and when. So it controls the cardiovascular system, respiratory system, digestion, thermal regulation, all of these other systems. And with pots it becomes out of balance and that's when people can start to get a wide variety of

Speaker 2: 1:42

Symptoms. Now I started off by saying there might be some connection to long covid OVID . Now POTS has been around since before Covid . So could you explore that relationship with me? Is it caused by long covid? Do people with long covid get pots? Say more about that if you could.

Speaker 3: 1:58

Yes. So POTS has been around before covid. It can be caused by a traumatic brain injury or a concussion that can trigger POTS in people. But yes, it can also be triggered virally. So Lyme's disease, norovirus, other viruses have been known to trigger pots. But with COVID it has become much more talked about um, because a lot of people have been getting pots from Covid .

Speaker 2: 2:24

Yeah, yeah . And there's so much about long COD , which is not a precise term, it just is symptoms that happen long after your infection's cleared. But we're , we are seeing people with all kinds of weird stuff, <laugh> after they get covid . Do you find in your practice that the majority of people that have POTS also had covid in long covid symptoms?

Speaker 3: 2:47

Yes, it can vary. So some people have onset from childhood, that's very common as well. But I would say certainly in the last few years, most people are coming in with some sort of post viral syndrome from Covid

Speaker 2: 3:02

And we do tons of brain injury as well. We do. So what about that? Do people with brain injury also get it?

Speaker 3: 3:08

They do, yes. So repeated concussions can definitely trigger pots just 'cause autonomic nervous system starts in the brain and if you have injury to the brain that tissue can become compromised and throw off the autonomic nervous system.

Speaker 2: 3:24

So I watched eight zillion hours of the Olympics in Paris. I do that. I was watching sports I never even heard of, but probably the one that is most interesting to me. I watched every single second of of swimming and they were talking about Katie Ledecky, who's like the greatest athlete ever to walk the planet just about. And she has pots. Had you heard that?

Speaker 3: 3:45

Yes, yes. She did come out of , on her journey about having pots

Speaker 2: 3:48

And she had that before COVID and all that. So famous people who win gold medals have pots. So clearly the reason I say that, clearly there is lots of room for optimism and for doing great in your life if you have pots. So let's now get down to the nitty gritty of what are the symptoms? Mm-Hmm. <affirmative> what what? How do I know if I have this thing? Yes,

Speaker 3: 4:11

There are so many symptoms that can come with pods because it covers so many body systems. The wide range of symptoms definitely can occur. So typically people have a very high heart rate with standing or activity, they'll feel dizzy or lightheaded. They might even feel like they're going to pass out. They might even pass out. Headaches and migraines are very common as well. GI disruption, brain fog and always people have fatigue, very debilitating fatigue.

Speaker 2: 4:44

So the first thing you said, and that's the tea in pots tachycardia. How do , do they know they have that? Do they feel their heart racing?

Speaker 3: 4:52

Yes, most of the time people will feel their heart beating very fast. They can also have kind of a chest pressure with it or chest tightness with it as well and feel very short of breath with doing things that they normally would not get short of breath from.

Speaker 2: 5:06

Does it come on suddenly or is it kind of something that sneaks up on you ?

Speaker 3: 5:10

It can come up suddenly. It can also be a little sneaky. So sometimes people will get the heart rate racing with activities, but sometimes it could be when they are just sitting down watching tv. So it doesn't necessarily have to be associated with an activity which makes it complicated.

Speaker 2: 5:28

That does make it complicated. 'cause all of our heart rates go up at times. My heart rate went up when I'm watching Katie Ledecky swim, much less being the one who's swimming <laugh>. So it must be kinda hard to diagnose. And you said they all have fatigue and I, I'd say 80 90% of my patients come to me and say, yeah , I've got fatigue. So that also is common. When they get to you, you're in physical therapy, have they typically already been diagnosed or are you sort of teasing it out with them? Them,

Speaker 3: 5:57

They typically have already been diagnosed and if they don't have the official diagnosis, they're usually awaiting the autonomic testing, but they usually have an idea of what's going on and we can assume some sort of dysautonomia is present just because the symptoms line up very well with that. Usually. And even if somebody does not have the official POS diagnosis or they do the autonomic testing and they don't meet the criteria for pos in the rehab program that we're doing, we do a symptoms based approach. So it doesn't necessarily like they don't need to have the POS diagnosis to be in our program.

Speaker 2: 6:33

Yeah, I think that that's kind of key because it's a clinical diagnosis that you and patients would do with their, whoever they see for their healthcare . They could be their primary care doctor . Some people see cardiologists, I think others might have seen a neurologist. And the patients I've seen have seen a lot of people.

Speaker 3: 6:50

Absolutely.

Speaker 2: 6:51

Do you find that to be the case is like by the time they get to you, they've been to 13 other people trying to come up with what do I have?

Speaker 3: 6:57

Yes, absolutely. So on average it takes six years from onset of symptoms to getting an official diagnosis.

Speaker 2: 7:05

Good grief. Six years, that's a long one .

Speaker 3: 7:06

Six years. It's sometimes for people it's even more than that, but within that time period, people are seeing a lot of different specialties, cardiology, gi, rheumatology, before they even get to a neurologist and get the tilt table test done. So that's a very common experience for people to see many, many specialties before actually landing on the diagnosis.

Speaker 2: 7:31

Can you tell people what tilt table testing is?

Speaker 3: 7:35

Yes. So it's the official testing for POTS and dysautonomia . So you will lay on this table and you will be hooked up to all of these different machines that are <laugh> testing

Speaker 2: 7:46

Yours .

Speaker 3: 7:46

Yes, absolutely. <laugh> . And you go from being supine and the table will slowly tilt people upright and during that time and after they will be testing to see what your vitals are doing. So for pots, they wanna see more than a 30 beat per minute raise from baseline. And they're tracking other things too, like sweating and what your blood pressure is doing as well. And your symptoms are tracking your

Speaker 2: 8:13

Symptoms. Yeah. So you've you've described it marvelously. I've seen it. I , uh, loads of times . So yes, you are strapped to a table and it puts you on a line down position into a standing up position. And no folks, it's not like some medieval torture device or it isn't like Dr. Frankenstein and all that. It , it's a medical device that simply measures your vital signs when you're in different body positions. So don't be afraid of the tilt table testing everybody <laugh> if , if somebody suggests you get it done, because that's really the objective way to do it. Right. Because otherwise it's hard to know. Yeah, I'm tired. How do you, how do you diagnose that? But before I get into , um, the long covid connection, you also said that everybody has fatigue, literally everybody. I mean it it , why do you think that is? Mm-Hmm. <affirmative> do we know?

Speaker 3: 9:00

Yeah, almost everyone does have fatigue and it's all on a spectrum. But yes, I would say when the autonomic nervous system is out of balance, it's functioning in a way that it's not normally supposed to function at least chronically. And that takes a lot of energy for all these different body systems to be working at a rate that they're not made for. So that can cause fatigue because all of the energy is going towards those systems trying to be in a balance and being taken away from people's ability to do daily things.

Speaker 2: 9:37

So this condition that has has existed and been described for some years now seems to be making a lot of headlines 'cause of covid . And we're now four, five years out from the first diagnosis of covid and we're learning a little bit more about some of the lingering for months or years, the lingering symptoms. This maybe is one of them. Help me out to, to define what that relationship is. Do we know how many people get POTS as a result of covid? Is there any data yet or is it still too early in in our understanding of it?

Speaker 3: 10:10

There's a few numbers out there. So the estimate of people with long covid is about 10 to 30% of the population of people that have gotten covid of those people, how many of them have pots? Not sure, but the symptoms certainly align in overlap in many ways where you can say that long covid presents like a dysautonomia .

Speaker 2: 10:37

I tell people all the time , um, who dismiss covid ? I said, yes, it has become a less severe acute illness for most people. Not all, but for most. And I remember very well when it was , uh, life-threatening all the time. And yes, it's gotten mild, but long covid OVID is something you really don't want. Um, 10 to 30%. I've heard those numbers as well. We're not sure. 'cause not all of it gets reported. There's not a robust data collection. But if one in four people who get covid get long covid symptoms, that's a lot. And, and some of those might get this condition. How in your practice do you see pots, whether or not it was related to long covid, how do you see it affecting people's lives, physically, emotionally, mentally, psychologically, all that?

Speaker 3: 11:25

Yeah, it can affect every aspect of somebody's life. Even just the daily activities that we need to do in order to go to work, go to school, care for the family, all of these different roles that people have in their lives can become significantly disrupted from pots. Even like getting ready in the morning can feel truly like a marathon to people because even just getting out of bed in the morning, the blood pooling that happens overnight when they sit up, they can start to feel dizzy, lightheaded, nauseous, and then to go on and get ready and stand up and do all of the tasks that you need to do in the morning to get out the door or even just have breakfast and get dressed. That raises the heart rate. And that can cause a flare in symptoms. This

Speaker 2: 12:19

Is all before you've left for the

Speaker 3: 12:20

Day, all before, sometimes you've even gotten out of your bedroom. We do work with patients that are considered to be bedbound and we'll do video visits with 'em and we'll work with really slowly increasing their activity tolerance and getting back some of that muscle mass so that they can expand their world a little more. Again,

Speaker 2: 12:40

You that could affect even your social circles, your family, and especially since nobody really knows what you have, you know, and it's hard to describe, but I bet I bet that's challenging as well.

Speaker 3: 12:49

Very challenging. And POTS is an invisible illness. You look at most people with pots in , you would never guess that they have this disorder and it's significantly affecting their lives.

Speaker 2: 13:02

And that's something that I'm hoping that we can at least , uh, enlighten our listeners about this condition that probably many haven't even heard of. And that if you have somebody or know somebody in your life , uh, maybe they're not just being a slacker <laugh>,

Speaker 3: 13:15

Right?

Speaker 2: 13:17

Yes . There's gotta be some stigma to the fact that you , you know , what's wrong with you? I can't you , you suck it up. You know, get out, do your day.

Speaker 3: 13:24

Yeah. Sadly, a lot of people with POTS and even people in their lives might think that they are lazy or unmotivated, but it is truly there's physiologic changes that are happening that are causing all of these things.

Speaker 2: 13:37

We've been talking with Miranda Langford. She is a doctor of physical therapy at Hennepin Healthcare with me right here in downtown Minneapolis. She specializes in treating patients with pots. So if you're suffering from symptoms that we've just been discussing or know someone who is, and you haven't been diagnosed, there's hope. We're gonna talk about the role that physical therapy can play in managing symptoms and the difference that Miranda and her colleagues are making in their patients' lives right after this short break. So stick around. We'll be right back

Speaker 4: 14:08

When Hennepin Healthcare says we are here for life. They mean here for you, your life and all that it brings. Hennepin Healthcare has a hospital HCMC and a network of clinics both downtown and across the West Metro. They provide all the primary care and specialty care you would expect to find, but did you know they also have services like acupuncture and chiropractic care available at many of their primary care clinics and at their integrative health clinic in downtown Minneapolis? Learn more@hennepinhealthcare.org. Hennepin Healthcare is here for you and here for life.

Speaker 2: 14:46

And we're back talking with Miranda Langford. She is a doctor of physical therapy at Hennepin Healthcare and a specialist in POTS postural orthostatic tachycardia syndrome. So Miranda, you've already told us about what the symptoms are and we've talked about the long covid connection. Now let's talk about physical therapy and what you can do. Before I do that though, it occurred to me who gets this? Does it affect everybody equally?

Speaker 3: 15:09

It can affect everyone, but it is most common in female born people. About 75%, actually

Speaker 2: 15:17

75% of your patients

Speaker 3: 15:19

In general pots in general pots diagnosed patients.

Speaker 2: 15:22

Yep . Do we know why that is?

Speaker 3: 15:23

Um, there's probably a lot of factors leading into that. Um, I'm sure there's studies being done on it as well. But age range wise , it's about 15 years to 25 years of age for onset of symptoms.

Speaker 2: 15:37

Adolescents, teenagers, young adults. Yes. Do we know why that is? We don't like young . That's young.

Speaker 3: 15:42

That is very young. Yes . I mean, there's a lot of hormonal changes happening. There's a lot of bodily changes happening at that time, so it's hard to say exactly. They can't really pinpoint it to one thing that would be triggering

Speaker 2: 15:56

It. So that makes sense with, with our Olympian , um, Katie Ledecky and, and for listeners, we only talk about public figures, medical issues when, when they've been talking about it themselves on international television. So, but that's, she's a young woman and , um, a highly conditioned athlete. Mm-Hmm. <affirmative> . So that it may break some stereotypes of who might be getting this. Yes . Thanks for that. So let's talk about what you do and your colleagues in the POTS program in physical therapy. So when somebody comes into you for the first time, what do you do?

Speaker 3: 16:28

We spend a lot of time right off the bat, really just going through all of their symptoms. What are all your symptoms? What are the activities that you're really having a hard time with? And breaking that down. So then we have a good idea of kind of where to start, where are they at baseline with their activity levels and what are their goals for physical therapy and being able to do and get back to some of those things that have been challenging for so long.

Speaker 2: 16:54

You're a physical therapist by training. When people think of physical therapy, at least I think they do you think of Well , yeah, I hurt my arm. I have a rotator cuff problem. I strained my quad. You work with me on my musculoskeletal system. This seems to be more complicated than that.

Speaker 3: 17:11

This is, yeah, this is very complex. It's working with the nervous system. So it's like neuro neurological physical therapy. So it is, it looks very different. It still includes the same things in the aspects that like ortho physical therapy would in terms of like exercise and cardio and strengthening. But there's so many other aspects to it that need to be addressed sometimes even before we get to that part of pt.

Speaker 2: 17:38

So you, you do a , a , a history, you talk about symptoms, you talk about goals. Mm-Hmm. <affirmative> . What do the treatment plans look like then?

Speaker 3: 17:45

So I would say in the beginning we would work really on education. So we need to make sure that before we hop into activity that they understand what's going on with their body. So we'll do a lot of nervous system education and we'll start to build their toolbox of what they can do to help manage symptoms that can start with the basics of making sure they're hydrated, making sure they have electrolytes , um, they're taking their salt to help with those have been prescribed and compression to help with some of the blood circulation issues that can come about with pots. And then also giving them nervous system regulating techniques. So we'll do breathing exercises with people to help with the blood flow, to help with reregulating, their nervous system. And we'll also do a variety of other nervous system related techniques as well, like use of weight to help regulate the proprioception and the nervous system. There's

Speaker 2: 18:43

A lot in there. I want to ask you more about you . So you talked about salt tablets and electrolytes and fluids, diet and hydration. How much role does that

Speaker 3: 18:52

Play? That can play a big role in people's symptoms. So low blood volume can be an aspect of pots and a tendency for the blood to be pooling hips down, which causes a lot of symptoms if you're not getting adequate blood flow in your trunk, in your head area. So we'll work on building blood volume. So salt and hydration, electrolytes and hydration, build blood volume in the body and can help people feel significantly better sometimes.

Speaker 2: 19:21

Yeah. You know, that's what one of the primary causes of dizziness and lightheadedness is not enough blood to the brain. And we have gravity working against us, don't we? Yes. You know , it pulls down in your legs . So, so hydration matters. You then talked about proprioception and kind of regulating your, your neurologic system and you talked about breathing. I find that fascinating because this is two episodes in a row where my guest has talked about breathing as a way to regulate something. Now , um, Dr. Mitch Radden talked about it in our last episode when we were talking about trauma-informed care and how you can regulate your heart rate by deep breathing. Now you're talking about regulating the nervous system by breathing. How does that work? What do you tell people to do? Mm-Hmm. <affirmative>

Speaker 3: 20:03

We'll work on diaphragmatic breathing to start off with. So the concept of breathing into your lower stomach, into your diaphragm, there's a lot of nerves that we have in that area and if we can breathe into that spot, it can activate the parasympathetic nervous system, which is the branch of the nervous system that's rest and digest. So a lot of times people can be living more in that sympathetic nervous system of like fight or flight and stress mode and we need to switch that. 'cause if you're living in fight or flight, that's only supposed to be for very short periods of time. And we want to be able to switch them out of that and get them more into a balanced state of their nervous system and breathing can directly do that.

Speaker 2: 20:52

That was a great explanation. You know, we all or most of us know about the fight or flight systems in our body. That's the sympathetic nervous system, but what many people probably haven't thought about quite as much is what you just said, the rest and digest portion of your nervous system, the parasympathetic system. And you can regulate that by intentional breathing. We all think we know how to breathe. Turns out we don't. <laugh> <laugh> . If you, if you haven't learned anything on this podcast, you should learn that breathing is important and being intentional about it and doing it deeply and using your diaphragm. I really, I really like that. Okay, so then you've, you've talked about that stuff. You've talked about the neuro system , you've talked about hydration and all that. What then do you do

Speaker 3: 21:34

Then? We'll work on really what specific activities are difficult for them. Sometimes what we find is that people are overdoing it. They'll do multiple things in a row, they'll feel pretty terrible doing it and then they'll crash for the rest of the day or the next days. And so we'll really kind of address that with the concept of pacing and like energy conservation. Like, okay, maybe you can do 10 minutes on the bike, but let's not do it at level seven. Let's maybe do it at level one or two. Let's have a really gradual warm up and cool down and have you take a break halfway through. And when you take the break, can you do some of the nervous system regulating techniques, whether that's the diaphragmatic breathing or any of the other techniques to help signal and cue to your body that it's safe. You don't need to be having a really high heart rate, you don't need to be getting dizzy or lightheaded. So to help regulate the whole system. And then usually people can find that they can do things. They just had to modify it with breaks , pacing and nervous system regulation.

Speaker 2: 22:42

That's brilliant. Listeners, if you don't know there , there's no more goal directed specialty than physical therapy. We , we always, I , you know, I read physical therapy plans endlessly and it always is goals. I'd like that 'cause you talk to people about what are your goals and how are we gonna get there and what progress are we making toward that. I like that, especially in what you've just said, it's very specific for some people, you know, you have to modify and pacing. I really, really like that. What other things do you tell people or are there other things that you tell people that they need to avoid in their life or that they should be doing more of in their life?

Speaker 3: 23:16

So on the other end, so there's the end of where people are doing too many things and then they're crashing on the other end would be where activity is super hard. They've kind of gotten to into this cycle of deconditioning and so they have become a little avoidant of activity because hard and it doesn't feel good and it flares them a lot. So on that end we would work on can you do small bouts of more movement? So even someone that is , um, a bed bound patient, for example, we would have them start to do small reps of ankle pumps or heel slides in bed. Just a few, however many they can tolerate at that time without overdoing it and slowly build on that over time. And then really it's like, well then can you be sitting up in bed for more hours of the day than laying down? And then transitioning from there into sitting up in the living room and sitting up in the kitchen and then having and going on short little walks around the house. It kind of depends on where the patient is at with their activity in terms of how we would guide them to either like do more or kind of modify what they're already doing and tone it down.

Speaker 2: 24:32

It sounds like people, it's sort of a daily fact of, of their lives and

Speaker 3: 24:38

It can also be on and off. Symptoms can be very present one day and very limiting in that day and then maybe not in the next day. And they feel almost essentially normal, which can be tricky to plan things. <laugh> can be tricky to explain to other people and really even just to make sense of it on your own too, because it's hard to track and they , there sometimes is no pattern. So it can have an on and off nature to

Speaker 2: 25:06

It. So listeners, if you have symptoms that you're not too sure about, you're dizzy, you're fatigued, your heart's racing and you don't know what it is, there is help available. I would encourage you to, wherever you get your healthcare, talk to your doctor, your advanced practice provider, talk to your neurologist about whether you might be suffering from pots. And if so, we have resources to help you. We'd love to help you here at Hennepin Healthcare with both Miranda Langford and Megan Meyer . They are our specialists in the physical therapy department on pots. We'll put some contact information for you on how to get care at Hennepin Healthcare in our show notes. Miranda, what would you like to leave with our listeners?

Speaker 3: 25:48

Yeah, so the experience and the feeling of having pods can be very overwhelming, but I would like people to understand that there is hope, there are real things that we can do to help with symptoms and slowly gain back that bandwidth so that you can get back to the things that you enjoy doing in life. And it's all possible and it's a slow process, but it is a very doable one. I

Speaker 2: 26:13

Love that help is available. Miranda Langford, doctor of Physical Therapy at Hennepin Healthcare. Thanks for being on the show. Miranda. Thanks

Speaker 3: 26:20

For

Speaker 2: 26:20

Having me. Listeners, POTS is a condition you maybe hadn't heard of until today, but I hope you've learned something today. And if you think you might be having some of these symptoms, I hope you can seek attention because there is help available for you. I hope you enjoyed the show and that you'll join us in two weeks time for our next episode. And in the meantime, be healthy and be well.

Speaker 1: 26:39

Thanks for listening to the Healthy Matters podcast with Dr. David Hilden . To find out more about the Healthy Matters podcast or browse the archive, visit healthy matters.org. Got a question or a comment for the show, email us at Healthy matters@hcme.org or call 6 1 2 8 7 3 talk. There's also a link in the show notes. The Healthy Matters Podcast is made possible by Hennepin Healthcare in Minneapolis, Minnesota, and engineered and produced by John Lucas At Highball Executive Producers are Jonathan , CTO and Christine Hill . Please remember, we can only give general medical advice during this program and every case is unique. We urge you to consult with your physician if you have a more serious or pressing health concern. Until next time , be healthy and be well .