#31 POTS: Symptoms, understanding, and management with Dr Tae Chung

I always tell my patients that diagnosing parts can be either super easy or super complicated. Almost 80-90% of parts patients are disabled to a certain extent. There are people who just cannot work or go to school. A lot of doctors who don't see a lot of parts patient, they usually say, "Okay, well, exercise helps just go to gym and try. That's just not gonna work." A lot of parts patients have exercise in tolerance. If you do too much cardiovascular training, more than they can handle, they always pay the price. Welcome to Make Visible, the podcast shining a light on complex chronic illness. I am your host Emily Cape Stevens. Welcome back. Welcome, Jairz. How are you doing? Today, you know what? I'm suffering less than usual. I want to have a little part of your stream in a. I'm obviously less than it has been for the last week, too. That's good, isn't it? I think what we have to say on that day is you need to still just take it as easy as you do on other days because there's such a tendency to go, "Yes, I feel good. Let's get it all done." That was a lesson I learned, probably in year one, quite hard. And I can still continue to learn it now in year six, fun, they enough. Yeah, wow. Well, at the top of the show today, I would like to, once again, ask our audience to comment, like, share this podcast. And in today's show notes, I am going to add a link in which you can feed back to us directly via a form. And we would love to hear some of the stories of our listeners. And particularly, I'd be really interested to talk to anyone about the financial impact that having a long-term sickness has had on you and your family. And I'd also be particularly interested to hear from people who might like to talk to us in the capacity as carers or supporting those people with these conditions. So we would like to try and get some of our audience involved in some of our upcoming episodes. And if you feel like that is something that you could do and you might have the energy to do, please get in touch with us. Yes, today's episode, we are going to be talking about the often misdiagnosed, much misunderstood condition of pots. Am I right in thinking that pots is something that has affected you? I have sort of pseudo pots, which means that I get a bit funny if I'm standing up for too long, but I don't think I fully, I fully qualifies pots. Now, what I really ought to do and what I've been encouraged to do, and for some reason I have put off for many years, is a NASA lean test. And we can talk about that at the appropriate time. I think we should call it an active stand test because some people find the NASA lean test title quite incorrect because apparently it has nothing to do with NASA. Well, my research tells me it does because one of the problems that astronauts have when they come back from space is fun, the enough orthostatic intolerance because they've not been subjected to gravity. So this is one of the things that people with chronic complex illness having common with astronauts is that basically it's like we've been in space for a few weeks and our bodies are struggling to deal with the onset of gravity. Please, fun to compare us to astronauts, but. I think it is before we go into looking at things like that, the NASA lean test, active stand test and ways that we might be able to help diagnose and potentially alleviate symptoms from pots. Let's have a listen to Dr. Tachron of Johns Hopkins University. He set up the pots clinic there in 2017 and still leads the team. Let's hear from him what pots is and some of the strategies that people like him who are at the top of the field might have when dealing with pots patients. And afterwards, perhaps you and I can dig into some of the strategies that people can take away to use for potential diagnosis and self-management. First of all, we should probably explain what pots is in terms of its full title and the symptom set that you see there. Okay, what pots stands for postural orthostatic cardiac syndrome and is considered to be largely autonomic nerve disorder and they've hard time handling their blood volume. And as a result, they have a chronic fatigue and disease on light head and this on standing, especially. But they do also have non orthostatic symptoms, meaning they can have a lot of symptoms without the position of changes that can include brain fog and migraine and a lot of GI symptoms as well. And in combination, those symptoms can be very debilitating. It's that unusual to come from your background in physical medicine and rehabilitation and with your neurology strand as well to looking at pots. Because I think a lot of pot specialists come from a cardiology background, but you say that you're seeing these people with the brain fog with the, it's a different symptom set. So tell us about how that translates into you understanding that as a pot's diagnosis and that chronic fatigue, the way that that plays into pots. First of, I can say it's unusual for even any cardiologist or neurologist to part patients. So I really appreciate any doctor of any background, willing to see part patients, I really appreciate that. I really want anybody more doctors to see part patients, that's first of all. Prior to me seeing part patients, most doctors who see part patients were either cardiologists or neuromuscular neurologists. So like I said, I did my neuromuscular training. So it was kind of a little natural transition for me to study some part patients and this is considered to be largely autonomic nerve problem. So it kind of fits into my expertise, but in addition to that, the statistics actually shows that almost 80, 90% of part patients are disabled. To a certain extent, there are people who just cannot work or go to school. There are some people who can actually go working full time, but mildly limited in their activities. But about 80, 90% of patients are limited in their daily function. And as a physical medicine rehabilitation doctor, that is actually my patient target population. What's the, what's the target in terms of an improvement of quality of life for your patients or to get them back to you? - Yeah, I know a lot of people don't understand much about, probably didn't hear much about PM and R as a specialty. The simple way of explaining PM and specialty is that we are population based specialty. PM and doctors, we see patients who have physical disability. And to take care of these patients, we have a special set of training to address their needs, recognize their needs, and how to help those people. So by nature of PM and R, we are very multi-discipline. There's a lot of overlap there. For example, a lot of typical PM and R patients are patients with a lot of orthopedic problems, maybe your amputees. So of course we work a lot with orthopedic surgeons or a lot of our patients are stroke patients for a neurological impaired and we work a lot with neurologists. Given the nature of parts, which is also multi-systemic, that's why I think PM and R doctors got trained in neuromuscular with the best situation to see parts patients. - And tell me about how you give that diagnosis of parts. Now I speak to Dr. Peter Breu, who is a specialist in orthostatic intolerance. Now this is postural orthostatic tachycardia syndrome. So there's another element. There's a difference between this and orthostatic intolerance. Can you explain the difference with parts? And another term that's often applied is dysautonomia. Can you explain if those are the same things or how the symptoms vary? I first have to actually say that I guess there are some different opinions about how the interpretive is different terminologies, even in the field, even among some doctors. But the way most people I guess, including myself, interpret it as first of all, dysautonomia is a very umbrella term. Any dysfunctional autonomic nervous system we can call this dysautonomia. I think probably better analogy would be psychological disorder. You don't have to specify schizophrenia or there are a lot of different-- - I don't see. I thought you were saying that dysautonomia is a psychological disorder. No, okay. - You're saying it's an umbrella term. - Exactly. It's an analogy. Please don't get me wrong. This is nothing to do with the psychological disorder. - No, I'm not. - But just to call anything psychological disorder doesn't mean that it can be depression or schizophrenia. It's a very umbrella term. So to say something is a dysautonomia, it's just like that. Very umbrella term. Anything that can be coming from autonomic nervous function, you can call this dysautonomia. Before we get to auto-steading tolerance terminology, when it comes to parts, I also want to emphasize that parts end with S. And S stands for. for syndrome, as I just mentioned. Syndrome, as opposed to a specific disease, by nature is a heterogeneous condition. When any doctor is called syndrome, that means we don't know much about it. But it's a thing, so we need to label it. So that's when you call syndrome. We don't know much what's causing exactly parts. Maybe all parts patients, they may have parts in a different path. They may not be exactly the same. Or even, are all parts patients having dysronomia is all coming from autonomic dysfunction? Maybe or maybe not. Maybe there's some people may have parts from some other cause, other than autonomic nervous function. At this point, we don't know. So I'm not even going to say entire parts is under dysronomy, I'm bralla. There's probably 90% maybe big overlap there. But again, I still also leave a room for some other non-autonomic cause of parts as well. So that's how I view the whole syndrome in a band diagram. I think orthostatic intolerance, or chronic orthostatic intolerance, is more of a term, as far as I know, there's not many great consensus in terms of different societies having some clear dinosaur criteria. This is a little more symptom description. And of course, chronic orthostatic intolerance, usually overlaps or love the parts, and chronic fatigue syndrome, and whole dysronomy of band diagram as well. So-- - Okay. So a patient comes to you-- - Yes. - with a chronic fatigue condition, and debilitation, muscular debilitation. What enables you to give that parts diagnosis? - So I always tell my patients that diagnosing parts can be either super easy or super complicated. I tell you why. In a way, it's easy because the syndrome is defined very broadly. So anything that can cause orthostatic symptoms, chronic orthostatic symptoms, like I said, might it be this, or sometimes they faint, or headache, and all the other orthostatic and non-autostatic symptoms just going on for three to six months, and then they have this orthostatic tachycardia, and orthostatic tachycardia is defined by more than 30 points, increasing their heart rate from a supine to a standing position. It can be from the tilt table or just active standard. And of course, there are some other additional things, such as if your pediatric is 40 points, rather than 30 points, and there's a mother technical definition, but that's largely that's definition of part. - But that is that increase in heart rate, right? That's specific, that's set at the part that enables that diagnosis. - Right. - But the more important thing about the diagnosis criteria is that if you really look at the criteria, there's a little corner that says, "Oh, but that, by the way, those phenomena should not be explained by structural heart disease." So now that makes it actually sometimes either diagnosing parts, whether very easy or very difficult, 'cause in many cases, actually, as you know, part patients, they're relatively younger patient in their 20s or 40s, and more female in the male. So let's say patient comes in who are previously very healthy and athletic, and suddenly they're having part symptoms. Let's say after COVID infection or maybe lying infection, those are relatively easier cases, because, well, first of all, I don't have any reason to suspect they have the structural heart disease. Somebody who's like maybe 19 years old, who's one in a matter of them, suddenly having these part symptoms, it's very unlikely that they have a heart structure heart disease. Those people, as long as I can rule out any structural heart disease, such as a cardiac read meal or heart failure, and then just simply showing orthostatic cardiac area, is relatively easy to diagnose part. Now, having said that they have a part, does that mean that they have autonomic nerve dysfunction or is there another cause of parts? I don't know, but we can still label them as having parts at their point. It gets way more complicated. The patients had some pre-condition or comorbidities, let's say they have some mild degree of some heart condition before they have parts, then the question becomes, is this some manifest nature of heart condition, or if they have a pre-existing heart condition and they have a part on top of that, that teasing that our can be a little difficult and I'm being very cautious when I diagnose parts in those cases. And it's probably something that comes on following virus or some kind of insult on the body like that. Or do you see patients who have just gradually over time developed this syndrome? Both, actually. So I think there's really not many great epidemiological researches on parts, but there's few pretty good survey from thousands of patients and from those surveys, just about half of these people have some identifiable infection prior to onset of their symptoms, such as COVID infection, alarm or EVV infections, FH type bar virus infections. So it is often attributed to a virus? Just about half or 40 to 50% case, we kind of attribute it to those infections. Others can be variable, can be sometimes somewhere very early in their childhood, maybe some potentially genetic taste to it, where the whole family member has parts. So it can be almost everything else. Some other small number of patients also report that they have some kind of concussion, head injury that's prior to onset of their past symptoms too. So it can be very variable, like I said, heterogeneous syndrome diagnosis. The go-to treatment of parts is rehabilitation, via exercise with a physiotherapist. Is that fair to say? - Well, you tell me about this sort of, not necessarily what you do, but the normal way that parts is viewed and treated. There are multiple strands to it, but a lot of it involves that physical rehabilitation piece which involves exercise. - Correct. So I'm gonna go in a little breakdown of the different aspects of treatment, but before that, I'd like to actually give a little bit of a kind of proposed pathophysiology of a wide-played part symptoms before even talk about treatment, 'cause if you don't have a target, you don't know how to treat. So basically, the core of the pathophysiology in parts is reduced blood volume return to the heart and lung. So that's actually why when they stand up, the blood is not being returned back to their heart. As you know, heart has to circulate blood, they pump out the blood and receive the blood so that they can circulate, but parts, there's a lot of evidence suggesting that there's reduced blood volume return to the heart, and that's causing fatigue because they're circulating low blood volume and exercising tolerance because they cannot increase their blood volume to your muscle and brain fogginess because they cannot increase their blood flow to the brain and so on. So as a heterogeneous clinical syndrome, it can be coming from a lot of different reasons why they have reduced return there. It can be autonomic nerve dysfunction where the blood vessel is not squeezing blood back enough to the heart, or there may be some black藝 somewhere down there, pelvic congestion syndrome, so-called. They can be another proposed etiology for parts as well. But whatever the reason is, as a final common pathway, they will reduce blood volume back to the heart and lung that's causing all the parts symptoms. So the main target of the treatment for parts is to increase blood volume that's returning to the heart. And to do that, we call this volume expansion therapy. The goal is to increase blood volume. And there are certain ways to increase blood volume and as you probably know, drinking a lot of water, salty diet, and there are some medications that can retain fluid so they can increase blood volume back to the heart and lung too. The physical exercise can be also viewed as a part of volume expansion therapy as well. - Okay. - So, a lot of people, when we do cardiovascular training or exercise, there are actually two kinds of things that can happen. Occudely, during the exercise, what happens is that, especially if you use a lot of low extremity muscles, our low extremity muscles squeeze the blood back to the heart and then momentarily increase blood return back to the heart. - Just in that moment though, or is there the suggestion that by doing exercise, it creates a sustained effect? - It's a momentarily actually. They'll carry out, we increase it dramatically, but when you stop the training, then it goes back out of the way. However, anybody actually, normal healthy people, meaning normal healthy, boomerah function, I guess. If you do a chronic cardiovascular training over time, over weeks, our body starts making a lot of red blood cells, 'cause we have to deliver more oxygen, and that increases our blood volume substantially. So, any replies to participation too. So, if you do cardiovascular training over a long period of time, our blood volume increases substantially, and that's actually why parts patients benefit from long term cardiovascular training. However, there's a big caveat there, like I said, there are a lot of parts patients have exercise intolerance. And they actually set back. So it's actually really not as easy as people think. A lot of doctors who don't see a lot of participation, they usually say, "Okay, well exercise helps, just go to gym and try. That's just not gonna work." I usually strongly recommend that participation, their exercise should be closely supervised by somebody who only understands physiology. So is that easy for you to identify from the outset, the patient will respond favorably to exercise or not? To be honest, I wouldn't say easy. I mean, more and more I see patients, this is actually one of the probably more difficult aspects managing parts. Actually, it's really sometimes with these patients who we think they may respond well, but they don't. And then vice versa too. And also, I'm realizing, increasingly realizing that when you implement exercise therapy, it needs to be in close conjunction with medical therapy as well. So oftentimes we have a whole team, we have actually designated parts of physical therapies in our team. And oftentimes their physical therapies will just email saying, "Okay, these patients need mid-June or increased fluid or some other medications as they progress their physical therapy program." So it is not really separate from medical, pharmaceutical treatment and physical treatment, it has to be very, very related. What is mid-June? Oh, mid-June is one of the medications that can school a basil constrictor, it pushes blood back to the heart and lung, and is one of the common medications that we use. And there are a few others as well that you regularly use. Am I right in thinking you use things like the properties? Yes, evaporating is a little different class of medications that lowers the heart rate. It doesn't have any effects on blood volume increase, but evaporating is also very common medications. Tachycardia to a certain extent can be a little helpful for parts patients. It is considered to be somewhat compensatory mechanism. For example, if you have a low blood volume, basically, the body is trying to beat heart fast, so they can compensate for low blood volume. That's why parts patients are in a heart rate goes up. But if it becomes excessive, it can be counterproductive as well. And in such cases, any medications that can slow down their heart rate can be helpful. And those medications include the class called beta blockers or Ivobradine, which is a very new medication that slows the heart rate without putting a lot of side effects. And what are the others more in the category of increasing blood volume that you would gauge you? Well, there are not many to be honest, but common use medications include, like I said, medidrin and fluidocorison that retains fluid in their body at the kidney level. And another drug called periodostigmin may act as a little bit of vasoconstriction and also helps with GI symptoms as well. Those are very common use medications. There are actually quite a few or several medications that are probably not commonly commonly used, but frequently used by some other different doctors in different situations. And on top of that, non-pharmacological case, if you actually look at the literature, there are some small studies about exercise and drinking water, graduations, but there has not been really good randomized clinical trials about it. So we actually want you to really answer all the questions, whether this non-pharmacological case works. We know what non-pharmacological kind of care suggests. I mean, this is like hydration, diets, and exercising and so on. We realize that a lot of parts claim, like I suggested, well, we can go to textbook website, if you have a part, you exercise and diet. There's one page, one, two, three, four, five things you do, just give it to the patients. Versus our clinic or some other clinics in the country, we actually follow them up, making sure they are actually doing the exercise and how we follow very closely and how much they drink, how they do actual care, really coordinated care with the multidisciplinary team. So you had a big uptick in pots when COVID hit. So you started getting more, not post-viral necessarily, but infection associated viral associated pots patients. So how much of your clinic now is taken up with that viral associated? Just about half of our patient population, we can pinpoint some specific infections prior to the until the first symptoms. Among them, how many patients have COVID specifically? I'll probably say 20-30%, but that's just a rough estimation. I don't have a specific number that's updated since 2022. And is there any difference in that COVID related spots versus MECFS or Lyme related parts, those infection associated parts? So clinically speaking, I cannot tell a much different zero to be honest. I've been asking about my colleagues about the same question. If anybody walks in with all the symptoms that I mentioned and meeting the parts criteria, can you tell, I guess, a reverse, if they had COVID infection versus Lyme or something else, I guess nobody can actually tell this point. I still believe anybody who gets parts from COVID versus Lyme or Epstein Barbarous, at least at the molecular level, it may be a little different. And maybe if there's a better way to recognize their symptoms or analyze their physical symptoms, you may find some difference, but at this point, it's hard to differentiate. So in terms of presentation, it's the same. So does that mean that a child looking at treatments for parts related to COVID would also have relevance in parts related to other viral conditions? So for those MECFS patients who have parts or for those other patients that have parts, we will be able to learn from this long COVID trial because obviously recover has this huge focus on COVID, but there is pushback within the community, within the MECFS and fibromyalgia and all of these patients who say, "You haven't done anything for us for all this time." Obviously there are people like you who have been treating people, but in terms of the world funding research and trials into those other things, we're quite far behind. So do you think that that kind of clinical trial looking specifically at COVID treatment should be able to inform us in other viral insults as well? Absolutely, yes. There's actually one of the big reasons that I'm working on this post-COVID parts, is not that I'm only interested in post-COVID parts and nothing else. But reason why we selected post-COVID parts population, there are a few reasons for that. But one of the main important things, we don't have a good biomarker that can show that if you have this, then you have parts, and this is the autonomine or dysfunction, and more importantly, it's an autoimmune condition, that's why you're having this problem. We don't have any biomarker for that at this point at all. Now, even for post-COVID parts, post-COVID onset parts, for example, the recovered auto-metrial for IVIG, we want to really emphasize that anybody who gets into trial are the ones who did not have any parts, ME/CFS symptoms prior to COVID infection. And somebody who has a very new onset parts after COVID infection, there are not really many other explanations other than autoimmune condition that can cause these parts. And also, at the same time, unlike Lyme, EVV, some other infections, everybody tests for COVID. That's actually why we selected it as a more scientific reason. It's more potentially relatively more homogeneous population that are more likely to respond to certain treatments such as an IVIG, which is why we select this population. But clinical trial is not about just testing the drug. We are collecting a lot of biosimples, and then this huge amount of resource for future discoveries. And from there, maybe we can find biomarker, and then they share without EVV, post-EVV virus onset parts, and other things too. To me, this is really the starting point of all these parts research. We are not just limiting into post-COVID-19. It's interesting, isn't it? I've spoken to other doctors who say the same, and actually what post-COVID enables us to do is have a specific infection that we're relating it to and looking at, whereas so many people with prior infections or people who have ME/CFS prior to COVID don't necessarily know what the driver was. So it's almost that we're using that COVID as a way to control these trials, because we know that it was specifically that. I think you were part of a study that did a large amount of proteomic analysis. Yes. And looking at pots in post-COVID again, you established that there were within these proteomics potential biomarkers for that post-COVID pots specifically, not necessarily diagnosing post-COVID. Can you tell me about those potential biomarkers? Yes, I mean, that study is just the beginning of the beginning. I mean, there are so many more things to do, and that just opens up really possibilities. My goal, I do have probably more different interest in what to do with the parts. I mean, the trials and finding good treatment. But also, like I said, finding really reliable biomarker, I think it's really critical. And there's a very direct, implication and patient care. Having specific biomarker finding that can open up opportunities for wide-eval parts. Maybe the biomarker is related to certain molecules that are involved in, let's say, autoimmunity or something else. They can really correct the code into wide-eval parts and maybe you can even develop treatments that can even cure parts too. So a finding biomarker has a huge implication and not only diagnosis or treatment in parts as well. And as you know, there's no really reliable biomarker for parts. The idea is that we can get blood samples from our parts patients and normal patients. And we can, well, it's a more agnostic approach. We don't know what the protein markers are going to be. We just measure thousands of proteins at the same time and see what separates them. And in the first paper we saw some bunch of proteins that can separate parts and normal people. That's potentially a really good starting point. Maybe among those proteins can be a good biomarker. Now to find what exactly that can be a good biomarker requires years of actually follow-up studies. I'm playing to actually really longitudinal follow-up patients analyzing their tests and other things and matching with their blood markers over time. I think it's going to take some time before we actually come up to the very library biomarker. But we are very, very optimistic that we will be able to find something down the road. So then finally I was talking with Todd Davenport the other day and he mentioned that you, because I noticed that you've done the systematic review together and he said to say hi to you. But he said that you work on another study together. Is it a second part of the same review? That first of you has more meta-analysis, existing literatures and the second review that we are working on together is more prospective reviews on how we approach exercising parts patients. Because there are not many really good studies to really meta-analysed on. But the very same group of people who see parts patients like Todd Davenport and chronic fatigue syndrome patients, especially as you know, Todd Davenport is a physical therapist and we approach them very similarly, whether it's parts or chronic fatigue syndrome. Sort of different though for sure, it's not exactly same. But one of the big things is as you know, a post-exertion of a lace or post-exertion of a flare of the symptoms. And like I said, that's one of the big challenges in treating patients with their exercise, therapeutic exercise. And I think we are realizing that first of all, nobody has one answer and it's very difficult. Also, as you know, parts patients, they have a lot of overlapping syndrome such as L- or Stano syndrome, EDS, M-Case, Mass Activision Syndrome, whole kinds of different, - It is, yes. - They can also affect our exercise intervention as well. I mean, the most common thing is L- or Stano syndrome, are we show the co-EDS patients? Whenever they do, we come from bite, they have a lot of sub-luxation, the hip, muscular, skeletal pain. So it's not really that easy. Like I said, more and more we get into this therapeutic exercise. There's a whole lot of complexity there. Well, fortunately, we have a good group of collaborators across the country, like Dr. David W. Ford and some other people in the Utah and our Hopkins group, very experienced therapies. And we are getting together, trying to really brainstorm what's going to the best way to produce a patient. - That's amazing. I love the amount of collaboration that is going on. I know that historically in MECFS, there have been these working groups across the country, but I think the amount of collaboration that there is now in this post-cave at the Society is fairly remarkable. So thank you very much for getting together with them. And I'm working with Visible Now, do you use? - I know a lot of my patients do. - Do they? - Yeah. - Yeah. - But it's not something that you necessarily advocate. - And for posture. - I tell my patients to use wearable device. - Okay. - That's really, really informative. But at this point, I just say, well, we can do Apple Watch, or Galaxy, or Fitbit, or whatever is available. There are a lot of financial stress, right? They are working as well. So I don't necessarily-- - Want to make anyone do that. - I spend too much money on things like that. So what is very, very, very, very helpful. I mean, the wearable device. - Yeah. - It just makes so much difference in what I can help with. - In terms of patients' pacing. Oh, absolutely. Pacing, or not only that, especially like I attract their heart rate with trend over the day. And that really determines whether I should use wearable or ebber-brotting, or when I should use it, and so on. So the more information I get, it's so incredible to help. - Really? So it's not just about their understanding, their energy usage, and what they're doing for themselves. It's actually useful for you in terms of your treatment strategy. - Right. - No, the physical therapist is very helpful for pacing concept, but for me, it's more for, okay, what should I use wearable for now, or when and what and how. And it's incredibly helpful. - I hadn't talked about that in terms of actually the way in which patients can then take it to their doctors. And it's not just about, oh, look, I've got really low energy, or this is my symptom of exacerbation, specifically for that heart rate change. - Thank you very much for your work, and I'm looking forward to the biomarker. - Oh, thank you. I'm looking forward to you too. Thank you very much. [LAUGHS] [MUSIC PLAYING] - So let's first of all talk about this idea of diagnosis, because I think that is probably the starting point for many of our listeners. There is this huge crossover between multiple of these conditions and parts as this syndrome actually falls under many of the conditions suffered by our listeners. I think a bit more as a set of symptoms, I also think that working out the cause of why we have this is so fundamental to how we might be able to treat it. But that is not really prevalent in our medical systems. I believe my daughter has pots because I repeatedly have tested her with the active stand test that I would love you to explain for our audience. But one of the key things that you and I always say is these conditions are relapsing and remitting. So the test done by the hospital very badly, in my opinion, for my daughter did not alert the doctor to the fact that there was any problem. When I observe her day to day, I see that she struggles with her heart rate every time she changes position. Talk to me about the test that we can use and medical professionals should be using to help people understand whether or not they have pots. Well, first of all, I just want to pick up on one of the words that Dr. Chung mentions, which was syndrome and syndrome being a word that we use when we don't really understand what's going on. And I think this is at the heart of the problem. We still don't really know what's going on. We have an idea that there is this basic problem of we're not getting enough blood volume return to the heart and lungs, right? But why? Why and how? And we don't understand that. And it's very difficult, as he said, to treat it until we can work out why and how this is going on. And I think a little bit like ME/CFS, this sort of lack of understanding of the condition leads to it's not really appearing in textbooks and the doctors don't read about it in their medical training. And so it's not the sort of thing where it appears on their radar like these are the science-rependicitis and this is what you do. It's not there, like that is. And so it gets missed. But at the same time, it's not necessarily a difficult thing in principle to diagnose. And when I say diagnose, orthostatic intolerance, first as pots, are they the same thing while there's overlapping? But certainly it should be relatively straightforward to determine whether you have a problem when standing up, right? First of all, do you just get an increase in symptoms when you stand up? And there's a set of symptoms that are on the list there, things like dizziness, brain fog, headaches. But then also, there's your heart rate jump. And you can see this relatively straightforwardly if you've got a wearable or some description. And if you want to do an active stand test, personally, I'm going to call it the Nassolene test because we can't compare ourselves to 100 meter Olympians or anything like that. But if we're like astronauts, that's the one thing. Right? That's the one kind of creep of interest. We can be cool together with. So I'm going to call it the Nassolene test. So what's it looking for? The answer is it's looking for a heart rate increase of over 30 beats per minute within 10 minutes of standing up. And 40 beats per minute in children. Correct. And we're also checking blood pressure as well during this. Now you can do a sort of a reduced version if you don't have a blood pressure cuff, better to have one. But if you can just measure the heart rate too. I daily do also need an assistance with you because that assistant needs to check that you're not about to collapse and fall on the floor. And also to take the readings and write them down. So what do you do? The answer is so before you start, don't do any strenuous exercise of any kind before you start. Don't have just eaten. Don't have just taken a load of caffeine. Be well hydrated, but not overly. So don't do it in a hot room. Do it in a room where the temperature is comfortable. And before you start, lie down for 10 minutes. Whilst you're lying down, take your heart rate and if possible, your blood pressure. Take two or three readings over the 10 minutes and average them. And then that's your baseline. Next thing, get up. If you find a wall to lean against, you put your feet about 15 to 20 centimeters away from the wall and you lean back against it. What you're doing there is you're stopping the muscles from holding you up, which basically makes it a little bit more challenging for your autonomic system to regulate the blood flow. It's why tilt table tests have you lent back, it's about 60 degrees because that means that your autonomic system has to work harder to return the blood. Stand up against the wall and start taking heart and blood pressure readings at one minute, three minutes, five minutes, seven minutes, and ten minutes. And also record any symptoms. So if those intervals, if you are feeling brain fog, dizziness, euphemism, test discomfort, or nausea, mention it to your resistance and they will write it down. Stop the test early. If you feel like you're going to faint, your blood pressure drops significantly or the symptoms become severe. So once you've had a look at those results, you won't be able to see if your heart rate has jumped by over 30 beats per minute at any of those points up until 10 minutes. And if they have, then essentially you have a positive test results for pots. So once you get to the 10 minute mark, you can lie down again immediately. And if you're having any symptoms at that point, notice how quickly they resolve. So if they rapidly resolve a pond lying down, that's the positive indicator in itself for auto-stactor control. And so looking at the results, a few possible options here. If your heart rate goes up by over 30 beats per minute at any point in the 10 minutes or more than 40, if you're under 30 years old, that suggests pots. If you have a systolic blood pressure drop of over 20, that is an indicator for orthostatic hypertension. If your symptoms are relieved by lying down, that's an indicator for orthostatic intolerance. But if you have normal heart rates or heart rate that jumps by less than 20 beats per minute, and your blood pressure stays fairly constant or no symptoms, this means you probably don't have pots. Now, I haven't done this test properly, but from the sort of the wearable tests I've done, when I've been standing up for a while, I feel like I need to lean or I need to purge. And if I do check my wearable, if I haven't, my heart rate's probably running at about 20 to 25 beats above normal, which suggests I'm somewhere between the normal increase, which is between 10 and 15 BPM when standing above lying and the 30 that indicates pots. So I am autonomically challenged there. Yeah, it's suggesting disautonomia, isn't it in that general umbrella? Correct, but not full blown pots. I had a tilt table test three years ago and failed grammatically. Am I say fail? I essentially passed out about the six or seven minute mark. So that again, is also indicative of orthostatic intolerance. If not, necessarily a full diagnosis of pots. And we reiterate we are not medical professionals, but what we're trying to give you here is tools for you to then take to a medical professional and say, I would like to be assessed for this. And a big problem that you might come up against is, as Jess mentioned, there seem to be few people who really understand this condition in the primary care line of medicine. And there is, as Dr. Chong mentioned, this sort of discrepancy between the people that treat pots because a lot of the time it's cardiologists, but it seems that pots is not a heart problem. It is a autonomic nervous system dysfunction. As Dr Chong said, in 90% of cases. So let's say you've done your active stand test or your astronaut test as I will continue to call it. Let's say that you've got some results there that suggest orthostatic intolerance, orthostatic hypertension or pots, then take that piece of paper to your GP. And you can actually present them with something that they ought to understand at that point. It's a very useful thing to have done. And that will help you get better care going forward. Ultimately, the results in themselves might help you understand what you need to do practically in your daily life to help manage your symptoms. But if you want to actually get help for pots and you can get help for pots, whether it's lifestyle changes or medication, then yes, take those results to your GP. And as Dr. Chong said at the end of the interview, they're awareable. And Jess has mentioned, awareable is an incredibly helpful device for you to be able to see on a regular basis. What is happening to your heart rate when you change position? Just enables you to check in and see what is going on. Dr. Chong briefly touched on it and he talked about medication, but you mentioned there, Jess, some lifestyle changes. Now, I am going to link quite a few different resources in our show notes, things like pot UK stand up for pots. There's a great society called the Australian Potts Foundation that has some really, really good resources. I'm going to link all of those in the show notes for people. But let's talk about some of the lifestyle changes that seem to come highly recommended. Although, as Dr. Chong said, they have not necessarily been rigorously checked through any kind of clinical trials. These are things that anecdotally seem to support. The primary thing that people with pots are advised is to increase fluid and increase salt intake. It's very difficult to give figures, but the general advice across the resources seems to be two to three litres of water a day and increasing your salt intake by six to 10 grams. I just wanted to give one word of warning on electrolytes because people might immediately think, yes, electrolytes are a really good way to increase salt content because they are a lot of them made up predominantly, I said, in chloride, I want to flag that a lot of them also contain a lot of citric acid and that can really exacerbate mass selectivation. So where we're dealing with conditions that have these multiple layers, you are going to have to be mindful of adding something that might have potentially other side effects to it. I think that a lot of the time it tends to be better to increase your salt content by increasing your salty foods. It's a minefield, Jess, because a lot of the sites say have salted nuts. That is really also not great for mass selectivation. So then in terms of that intake, a lot of the time it's suggested eat more smaller meals because of the way that your heart rate changes when you're digesting a heavy meal. So instead of two to three meals a day, it suggests six to eight small meals a day and a decrease in carbohydrate and an increase in protein. I think the other big thing to do is to check for deficiencies because I can fill eight and B12 can definitely drive these pot symptoms. What would you add to my list? So you don't feel cool putting them on, but just tell yourself you're an astronaut and it will be fine. Compression wear. So these are basically super tight leggings, you can call them tights, and you also get ones that go around your torso as well. And again, this helps stop blood pooling and helps that return of blood volumes, the heart and lungs. So compression stockings are up there on the list of things to try. The other thing to be aware of is if you've got pots, you probably also struggle with temperature regulation. And along with eating big meals, the one thing that all suddenly make your pots a lot worse is probably heat. So wherever possible, tried to, again, it's difficult, depends where you live, but you probably find heat difficult and you may find cold difficult. And again, this is just part of the autonomic regulation of the system being out of whack and it's something else to manage. So you might find that you get hot flushes that come across and again, your body is simply struggling to manage heat at any one given time. And if you're in the middle of that, the pot is going to get much worse too. So I think layers, along with the compression stockings, layers that can be removed or added recording to needs are a helpful piece of advice. The compression thing is really interesting because for someone like me, a lot of the time I want to get rid of any type clothing because in terms of sensory for me, it's too much. So there's that that comes into play as well. But I do know that there are a lot of compression garments and a lot of the doctors who use that as one of the first line treatments. There are things like showering that can be really challenging in these conditions. And actually there you might need a shower stool. Now that so many people have suggested that with many, many of these conditions that there are simple additions that you can make to your life that just might ease things. So we always talk about it pacing again, pots and your symptoms are don't really proportional to the amount of time you spend on your feet. So simply breaking up your tasks so that you spend as little time continuously on your feet as possible. Take frequent breaks. If you get particularly symptomatic after seven minutes of standing up, then every five minutes sit down for five. We'll lie down for five. We have to manage the way that we attempt to get through our daily life. And that can make a few difference actually to your experience of that day by simply breaking things up. There are things like that that can have positive impact on pots, whether they're all related, then also has positive impact on other of your symptoms and whether or not you then crash in some of these conditions. One of the things that Dr. Chun said there is work with a specialized physiotherapist or exercise physiologist. And if you are lucky enough to be in a specialist pots team, you might have access to those. But I would like to give a warning here to people who are referred to non-specialist exercise physiologists. I was saying, to see someone at an NHS hospital. And he told me to start doing weights because this age old thing he thought that I was deconditioned. It is there in the 2021 updated NICE guidelines of treating MECFS that pushing exercise on patients is not appropriate. As Dr Chong said, there are some people who might respond favorably to exercise, but we need to be so, so careful, and I would like to give warning to everyone to be mindful when you are advised by people who are not specialists to simply go out and start pushing yourself for exercise. Please, please be mindful that they are not in your body. They don't know how you feel and you know in your body how things are affecting you. And I encourage people to trust listening to your own body, please. It can be really, really detrimental. I could be agree. If you fit the criteria for MECFS or you have exercise intolerance, don't do exercise even if the doctor tells you to. Can I throw something at you, please Emily? Please. The frontier of treatment. We have the established treatments for pots which include the lifestyle changes that we've mentioned, the medications like beta blockers, mididirene, parodestic mean. Something that both you and I have tried in various forms, I believe, for improving autonomic function is TVNS transcutaneous vagal nerve stimulation. There is evidence to suggest that that can regulate your heart rate variability and improve vagal nerve tone. Yeah, I feel like the solutions we're going to find for this. This part of the ultimate nervous system regulation are going to be slightly out of the box. I don't think it's going to be take a pill and suddenly the ultimate nervous system just behaves. I think we're going to have to think electrically, magnetically, electrically, something like that as ways to approach this and also, politically too, as would all be. I mean, you know me, I'm a massive advocate of breath work and that that form of nervous system regulation and there is the suggestion with some of those things in the same way as electronically stimulating your vagal nerve. That because the vagal nerve is essentially an electrical pathway, we are all made up of electrons that stimulation by whatever means can have an impact on that. So I think this crossover with that electronic, the magnetic resonance is hugely fascinating and an area that we should definitely delve into the more evidence that comes out and the more research that is done into it. So just in this whole world of electromagnetic stimulation, there is a boundary between the stuff that has evidence and the stuff that has very weak evidence. You have to be a little bit careful. I think it's really important. The next place for us to be looking for complex chronic illness is for treatments that have been shown to be effective with some form of condition that may be adjacent to complex chronic illness because we know that there is a physiological effect because the world of snake oil out there is huge and I think we have to be careful of it because a lot of that snake oil is very, very expensive and it wants your money and it will tell you very nice things. So much of this is so expensive. There is a really good evidence base with some of the TVNS but not all of it and this goes to that point that everything has to be well researched. I do find it exciting that we're potentially at the fore of actually going way deeper into understanding so many of these conditions that have this huge overlap but that are treated very poorly and a lot of the time primarily suppressing the symptoms chemically. And I guess my hope with all of this research that's going on is perhaps we can actually have a far greater understanding of the human body and its malfunctions at large rather than this only being appropriate to one condition or a couple of conditions. I think one of the interesting things that complex chronic illness has in its own way, Shona Light on the established, you know, Western medicine mindset is that the specialties which we've traditionally had in Western medicine are very good at treating things like a broken leg and diabetes and heart pressure issues, cardiology, orthopedics, gynecology, all of these specialties are important clearly but we don't really seem to have very big chapters in the medical textbooks on the autumomagnetic nervous system, on the really fundamental nature of metabolic and mitochondrial function. And these are two subjects which are so deeply woven into the fabric of complex chronic illness and we've sort of ignored them in our quest for gathering evidence based. My hope would be that as time goes on, we do start to get fuller chapters in those textbooks on the autonomic nervous system, the function of the nervous system. We don't fully understand it. We don't fully understand what's going on on a mitochondrial metabolic level yet. And this is really where the next leap in medicine is going to come from. I think and I hope over the next generation or so. - Sillelia and I do feel like that autonomic nervous system and metabolic and mitochondrial function piece will actually influence so heavily in those other conditions, hypertension, diabetes. These things that are at the moment treated, balanced, but not cured. This and I know you hate using that word but - - No, I'd love a cure. Perhaps the leaps in medicine have the potential to actually help us to reverse gain understanding of the human body. - Well, I think this is fundamentally it, isn't it? We're coming at it from the outside in, not the inside out. So you treat the surface symptoms as opposed to going deeper inside and solving the root cause that's actually generating the disease in the first place. So we're treating the symptoms of type 2 diabetes. We're not removing type 2 diabetes. - Yeah, absolutely. And it's the same with all of these conditions. Symptomatic treatment, not going upstream, upstream, upstream. What was the cause of any of this? And perhaps it's all autonomic dysfunction, autonomic dysregulation. - Yeah, connected to immune dysfunction, connected to metabolic dysfunction, connected to inflammatory dysfunction, you name it, right? - What with the whole body being connected? One system. - Yeah. - Wow! - Jess, it has been such a pleasure talking to you today. - As always. - Thank you so much for joining us and to all our listeners. We look forward to speaking to you again soon. - Thank you for listening to Make Visible. Please do like, follow, or subscribe to listen to our next episode where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you, visit our website at MakeVisible.com. [BLANK_AUDIO]