 Why's it feel so good? Welcome to Tea Time 004. This is where Allison and I drink tea and it is time. Breaking news, she kinda got a diagnosis, kinda. What was your... It's a diagnosis. What was your diagnosis? So after seven long years of weird symptoms that come and go and that have affected my daily living, I went to some doctors at Mayo Clinic. We did a bunch of tests that we'll talk about and I was given the diagnosis of postural orthostatic tachycardia syndrome, commonly known as POTS. So POTS is a condition where the blood in your body is carried in veins and arteries. With normal, healthy people, when you change position, your arteries are going to change as well. So if I go from sitting to standing, I now have to overcome more gravity. And to do this, my brain is still gonna need blood. So my arteries are going to constrict and it's going to push blood up into my brain from my legs or my abdomen or wherever. This allows your brain to get oxygen and it is a good response. It's normal, it's expected. With POTS, your arteries don't do that. So when you stand up, your brain doesn't get enough blood and POTS is commonly known as the fainting disease and people typically pass out because your brain doesn't have enough oxygen. So you pass out because your brain doesn't have any blood and it's like, we need blood, so it makes you go horizontal and then your brain gets blood. Evolutionarily it makes sense because then you eventually wake up. Yep. So that's kind of what it is. There's four kind of types of POTS. But they're all a little bit different with a little bit different symptoms. And I think it's important to talk about here how POTS is a syndrome. And so when we talk about what a syndrome is, a syndrome is basically a word used to define something that we don't understand very well in science and medicine. So a popular one would be the chronic fatigue syndrome. Chronic fatigue syndrome is a wide list of symptoms but we don't really understand why it's happening. With POTS you have a wide group of symptoms. We kind of understand why it's happening. We know it's related to blood flow. We know it's related to arteries. But beyond that, we're still trying to figure it out. So it is a syndrome, which can be kind of frustrating because it doesn't really give you a definitive treatment or outcome, it's just, this is what you have. And here's a nice name for it and we have some lifestyle adjustments that you can try to make. Yeah, good luck. Yeah. Now you have a name. Which is something. Which is something. So there's four types of POTS. You have, we'll talk about hypovolemia first. So hypovolemic is thinking like you don't have enough blood in your body. And so they think kind of the pathology behind this one is that the blood when you are standing for long periods of time can start to pool in your legs. And this is true for anyone. But our veins help return blood and they pump the blood back up. But if your arteries aren't really constricting they say dilated, you're standing and that blood can come and very quickly down into your legs while standing and it has a hard time returning that amount of volume because gravity is now helping push all that blood down and you're not changing the rate of flow at which it goes down. Are you, you said arteries but you were talking about venous return? Yeah, so it's like, I'm trying to think of a good analogy here. So your arteries, when you're standing your blood flows downward through your arteries and your veins pump up. So in a healthy person, your arteries constrict which slows the blood falling down. Gotcha. Right? And then the veins return that blood. I see what you're saying. In POTS, if your arteries don't constrict when you're standing, they stay open and the blood comes down at a faster rate and then the veins struggle to push that volume back up so you can have blood flowing. Yeah. Yeah, so you don't really have enough blood through your abdominal cavity to your brain, et cetera. So that can be an issue and that's kind of one of the pathologies that they think of how POTS works and specifically the hypokalemia type. Yeah. Then you have the hyperagenergic. So hyperagenergic is talking about your nervous system. So we have kind of two types of nervous system. We have our excited nervous system and we have our rest nervous system. So excited is what gives you energy. It helps you exercise, it helps you run away from a lion. You have your relaxed nervous system which helps you sleep and digest and do all that stuff. In hyperagenergic, your body is releasing chemical signals to make you more excited. So it increases your heart rate and does all that stuff which is where the tachycardia comes in. This is pretty well associated with a specific type of tumor found on the adrenal glands and in this case, your body is responding to the signals being released. So you're releasing- Normally. Normally, yeah. Well, you're releasing- There's just a lot of signal. Yeah, you're releasing abnormal amounts of chemical signals and the receptors are responding in a normal way where it's like, you have tons of signals, let me receive all these signals. So that's kind of the hyperagenergic one where you're still getting the tachycardia but it's not because the arteries themselves are dysfunctional. And then there's the last two. And so these are the two that my doctor and I are playing around with that I probably have one of these types. She thinks I have neuropathic pots and so when we look at the way that nerves respond is you have those signals. So the hyperagenergic, you have too many signals. So you have your signaling part of your nervous system and then you have your receptors. Receptors take that signal and then help do that action. So in this case, you have a signal that says we want blood vessels to constrict. Receptors on the blood vessel have to take that signal and then help constrict the blood vessel. With neuropathic pots, these small nerve fibers are not working. We don't really know why they're not working. Is it that you don't have enough nerves? Is it that the nerves are damaged? We just know that they're not functioning the way that they should be. And so that's kind of what she thinks I have which based off of my neurological symptoms, makes sense. But the last type of pots and based off of my onset of symptoms seven years ago, this is the one I feel like I have which is secondary pots, which is probably like the most depressing of the pots because it's the one where we know the least amount. But it's commonly seen after you have some type of infection like Lyme disease. And so I have Lyme disease and four months, I was treated for it, felt great for like four months and then got really sick again with all these symptoms and since then no one's been able to explain to me why I have these symptoms. So I feel like that's maybe the kind that I have but it's not like one or the other. You can still have neuropathic pots and still have had Lyme disease. They're not separate. And Lyme seems to be related to a lot of these types of syndrome type things. Because we don't understand it. And that's everyone wants to have like definitive answers and wants to think that they know this is absolutely what's going on. And in reality, that's never the way it is. Nothing's ever simple and we can't try to think about things that way. Cause it's just gonna frustrate you. So that's part of the reason I wanted to make this video is just a document that like this is a new diagnosis for me and it's not super clear but it's still pretty helpful to kind of understand or have an idea of what's going on just to adapt lifestyle, which we'll talk about. Yeah. So the name pots has tachycardia in the name. So that to me is the symptom of pots but it seems like obviously you have a lot of other stuff going on. And maybe you have, or maybe you don't have some of the other symptoms. What are the symptoms of pots? So it's a syndrome, which means there's tons of symptoms and I only have some of them. I am lucky enough to not have the type of pots for you to pass out. I think about that every time I start to get dizzy like this is gonna be the first time I pass out. There's been a couple of times especially this week where I was like, oh, maybe I will pass out but thankfully not. So I kind of pulled up a list of symptoms just because there's so many and I can go through all of mine but mine are unique to me, everyone's different. And so for me, my symptoms involve my nervous system so I get peristigia, which is like pins and needles specifically when I'm exposed to hot temperature but I can get it at other times too like just when my body temperature elevates while exercising I get fatigual exercising, I get the tachycardia, I get dizziness, I get nauseous which is actually a symptom of this which is kind of blew me away because I've had that issue for probably all seven years. That's relieving because that is inexplicable. You can get various types of muscular pain, joint pain. You can get IBS, you can have constipation, you can have the lightheadedness, shortness of breath, anxiety, brain fog, like. Any symptom that needs blood could be effective. Which is everything, like vision changes. I have like urinary issues, like you can have urgency and frequency and all these symptoms that are like maybe I have a kidney issue, maybe I have a bladder issue and whether or not it's kind of that neuropathic aspect where maybe it's the small nerve fibers that are affected I don't think we really know. Yeah, but it's obviously systemic. It's systemic, yeah. And so some of that like the constipation one actually was really interesting to me and the stomach pain and the nausea because it's like related to the blood flow to your intestines that is causing those symptoms. And so that for me was kind of like, oh wow, it just changes the way that I think about it now. And so thinking about it that way does allow you to make some modifications to how you're handling and managing your symptoms, which is cool. So how do you treat it? There's not a lot of great definitive treatments out there right now. Right now it's mostly lifestyle. And so oddly enough, if you are struggling with a chronic illness, you've probably tried most of these lifestyle changes like I have. So that was when she first said like, I think you have pots. I was like, okay, what are we gonna do about it? And she's like, well, I have lifestyle changes and I'm like, I've tried all of these for seven years. I figured all of this out on my own because I found out if I drink alcohol, I feel way worse. So I don't do that anymore. If I drink caffeine, I get tremors. I don't do that anymore. So I've just kind of notched off all the things that they recommend with the exception of a couple, which we're trying, but it's mostly lifestyle changes. So it's like they want you to increase your, not just your water intake, but your electrolyte intake. So you're not just peeing out all the water that you adjust. So trying to make yourself hypervolemic opposite, constantly bloating your arteries of water, trying to keep as much blood flowing as possible. You can do compression tights, which I found in college kind of helped. Like after a practice or something, I'd feel a lot better when I would wear my compression leggings. And so when I was on my surgical rotation a couple of months ago, I wore leggings under my scrubs every day, which I think maybe helped. I never passed out in surgery and I was standing for like eight or nine hours a day. So that was cool. You can eat salty foods. That's like one of the number one things that you wanna get that's related to that hypervolemic idea. And then something that we have not done yet, but is on my list to kind of try is elevating the bed. Yeah. The foot of the bed, you said? No, the head of the bed. And I thought, ooh, we have a storm warning. So I thought this was pretty cool when they were talking about it in, when she first said it to me, I was like, I'm not doing that. And then she explained why you do it. And I was like, okay, that's kind of cool. And the thought process is if you elevate the head of the bed so that you're sleeping at an angle, your kidneys are not going to filter out as much water as they normally would. So you're not necessarily trying to like decrease the blood flow to the kidneys, but you are trying to kind of do that. Okay. That's what I was gonna say. It sounds like- It's not like you're causing like poor perfusion to the kidneys where you're gonna cause a kidney injury. But it's like, we don't want the kidneys to filter out all of the water while you sleep so that when you wake up, you wake up and you lose a lot of water. So it's important for you to rehydrate in the morning. But in pots, they're like, we don't want you to lose that water because you at no point in your day can be hypovolemic or dehydrated because then you'll be very symptomatic. So she recommended that, not because of any urinary issue that you might have had, but only because of the pots. Essentially, yeah. Okay. I think it in theory would potentially help with like waking up in the middle of the night to go to the bathroom. But no, it's not specifically to treat that symptom. Correct. So you can do those lifestyle changes. And then they recommend like, you can use beta blockers for your heart rate. But for me, as someone who's been active my whole life, like my resting heart rate isn't high. If I'm supine or asleep, my resting heart rate's in the fifties. Like if I'm sitting my resting heart rate, it's not over a hundred, like some people with pots have. So for me to take something like a beta blocker, I might pass out from that. So beta blockers point to suppress your heart rate. And if I'm not constantly tachycardic, it's probably not a great option for me. So it's not really a treatment that her and I want to try. Even though I've had providers in the past recommend it for anxiety, which I've been incorrectly diagnosed with before. Common for pots to be incorrectly diagnosed with anxiety because if your heart rate is 120, you're gonna feel anxious. Kind of hand in hand. Yeah, they're not separate. Not separate. So the last kind of treatment that you can do is an alpha-hydrogenergic agonist. So mitodrine, mitodrine. But you don't just have receptors on your arteries. You have alpha receptors throughout your whole body. And so these are not specific. So you have a bunch of side effects and stuff that can come along with these. And if the receptors themselves aren't functioning properly, something to stimulate that receptor may not work for you. So again, it's like these solutions are not ideal for all the patients. So there's not really any good treatments out there, but we're trying. We're gonna make some modifications. I've been increasing my salt intake, increasing my fluid and electrolytes, changing the way that I kind of manage my symptoms. So now if I start to feel sick, I used to lay down and then I would be out for the rest of the day. So now I lay down until the majority of my symptoms have gone away. And instead of staying laying down because I'm concerned I'm gonna get sick again, I get up and move around to keep my blood flowing so it doesn't pool. Yeah, yeah. The one thought that I had was you were saying that your symptoms aren't so bad. Like there are people with POTS who are way worse off. And I was thinking maybe a lot of that could be because of all the lifestyle stuff that you have done up until now. Is there any other like basic thing that maybe somebody else watching hasn't tried that you tried? Truthfully no, not unless you're new to the POTS community. Like this stuff, people with chronic illness, and I think this is maybe why people with chronic illnesses get so frustrated is because, and you probably relate to this as well, when you're struggling with health problems, you're gonna do everything you can to try to make yourself feel better. So when you go to your doctor and they're like, have you tried mindfulness? Eating broccoli once, yeah. Yeah, have you tried eating vegetables? Have you tried mindfulness? And I'm like, I taught courses on mindfulness, like yeah, I've tried it. I don't need you to tell me to try mindfulness. But not everyone has, but I understand it's frustrating. But the people who have been having symptoms for a long time have most likely tried it. They've most likely already made all these lifestyle modifications on their own. Like they've probably cut out alcohol. They've probably tried drinking more water and drinking more electrolytes and doing all that stuff. So some of it is maybe nuanced, like specifically salt intake. Increasing that was like, okay, sure. I haven't added a lot of salt onto my food. So maybe I should try that. Yeah. Like the bad thing I haven't tried. But the exercise stuff like, yeah, I've done every exercise that you can think of and every type of programming you can think of. And no matter what I do, I at some point feel sick doing it. Yeah, yeah. So it doesn't matter. Like it's so funny, I was reading an article today that was like, you should try some soft yoga if you have pots. And I was like, excuse me. Like, this is not a solution for me. Like I've taught yoga. Like I am fully versed in how I feel sometimes. And sometimes when I do yoga, I feel horrible. Even if it's like the most easy, like lay on the ground and breathe and that's all you're gonna do. I'm like, no, I can't do this. I need to just sleep. Like I cannot do anything else. So exercise, it can help you. And I think that's why I've managed my symptoms and why a lot of people can manage their symptoms. But it's not going to treat this. And it's not an option. Like when I go into the doctor and I'm like, I need help. And they're like, did you try yoga? I'm like, okay, I'm out the door. Like you are no help to me. If that's what you're giving me, you know. I know as much as you and you're not gonna help me at this point. So I'm out. But there are new things in the work. In the research world. Yeah, what, I saw you did some research reviewing. I did. What, however briefly, did you come across? So a couple of nights ago, I don't even know if I told you this, I could not sleep. We were having a storm. I think I did have caffeine that day. And I don't know, I just, I was not sleeping, which is also a symptom of POTS. And it was like 2 a.m. And I was like thinking about stuff. And I was like, if I'm gonna be up, I'm just gonna do some research. And I found an article written by a William Gunning from the University of Toledo. And I want to preface this article with, it was funded by the Dysautonomia Advocacy Foundation, which is kind of like a big POTS group. So they did fund this research for him. So maybe a little bit of bias. They didn't just close any other potential biases, but if they're funding it, they're looking for a specific answer. And he delivered. So in 2019, he did a research project where he took 55 POTS patients and he wanted to see if they had something called an autoantibody. So autoantibodies are basically antibodies that your body makes that attack part of your body. It's a lot of bodies, no sentence, but yes. Auto means self, because etymology is important. Hey. I hope I'm right. So, yeah. So the antibodies attacking your own body. And what he found, or what he looked for is do people with POTS have autoantibodies to those receptors that we had talked about, those things on the arteries that received those signals. And in the 55 patients that he tested, just kind of a small population size, I will say, he did find 89% of the patients, which is a large number, have autoantibodies for the alpha-adrenergic one receptor, which is what receives epinephrine on your arteries and causes them to constrict. So that's pretty strong numbers that make us think maybe this is an autoimmune disease. And a smaller number was 55% of those patients, or I'm sorry, 53% of those patients had autoantibodies for a mesophrenic acetylcholine M4 receptor, which is just another type of receptor, which does a similar thing. So, pretty interesting. Yeah. He put this out there, it's pretty groundbreaking, there's a lot of talk in the community and among that dysautonomia network that they are pretty strongly accepting that this is probably an autoimmune disease, they're still researching it. And the same guy, William Gunning released a paper in 2021 where he looked at different inflammatory markers, specifically levels of cytokines that people may have. Cytokines are part of the immune system as well, that we think about inflammation, which is an important part of the immune system, but in autoimmune diseases, people tend to have abnormal amounts of inflammation, common ones that you can think of are like ESRs and CRP, those are like two standard ones that you don't see in POTS patients, but you see in a lot of other autoimmune diseases or any type of inflammatory disease, so you could have a really bad cold or something and your CRP and ESR may be elevated. But in POTS, he found interleukins and TNF alphas have normal amounts of those too, which are pretty strong inflammatory indications, which would make sense for an autoimmune disease, but it also makes sense for other stuff, right? So like you can have high levels of TNF alfa with a lot of things, not just autoimmune. Yeah, it's a really general signaling molecule. General and broad and doesn't mean a whole lot. It's seen a lot with like cancers as well, so it's not specific for autoimmunes. I don't think there's, and I think it's like exclusively pro-inflammatory though, correct, not anti. I think. I don't know, but it seems to come up that way at least. So, yeah. So it's cool and exciting because this does give me hope that there might be some type of definitive treatment. They're doing studies right now with POTS patients using IVIG, which is like IV immunoglobulin therapies, which can help basically reverse with these autoantibodies, and that's wicked. Yeah, we need to put some receptors in those bodies. Yeah, if there was a way to like regenerate those receptors, that'd be kind of cool. That'd be cool, yeah, CRISPR. Yeah, I don't know that CRISPR can do that, but maybe. We might have to see. Not if they're, you know, if they're being made and then they're being destroyed. Well, because that's a nerve. You'd have to see, well, I mean, the receptor though. Yeah. You could code for. Interesting. So we've, I guess, kind of talked about a lot, but we kept it on the POTS train. We did well, I think. Just lastly, because I know it's my channel, but people definitely care more about you on my channel. How has your life changed since the diagnosis? Yeah. I'm curious if you think that there's changes. I feel like it's actually changed a lot. I think so too. It's weird. Yeah. And it's almost heartbreaking when I really think about it, because. I just needed more salt. Well, yes. I'm mostly kidding. I was thinking about it today. So I had my pediatric end of rotation exam today. And so I was really stressed out this week, but on my drive home, I was really kind of reflecting on how this rotation went and how I felt and everything. And something I reflect on frequently is how's my body feeling. And this is like my, I found out halfway through my surgical rotation that I was diagnosed with POTS. And so to have a definitive diagnosis for this entire rotation, I was thinking about how did it change things for me? And I was thinking about how I still had symptoms pretty much every day. Like making the, like I started having salt early in the morning, drinking electrolytes every day, drinking tons of water. Like I walk around with this massive water bottle that they make fun of me. That's like a full leader that I just like carry around and drink. And I am having so much water every day and electrolytes and trying to fill my body with as much as possible. And I'm trying to make myself exercise. But I think what it's changed for me is when I feel my symptoms, just understanding like I'm dizzy right now. That means I probably don't have enough blood to my brain. What can I do to help that? I can sit down. And just thinking small changes like that have, and just the general anxiety. And I think with POTS, part of the issue is you feel so sick and that makes you feel nervous and concerned and anxious. And this is why that first neurologist told me all like, there's nothing wrong with you. You don't have multiple sclerosis. You're just anxious. And I like how upset that made me because I, yeah, I'm an anxious person, but I don't think what I'm feeling right now is because of anxiety. I think I'm dizzy because I don't know why. And now I know why. And my anxiety has changed because of it. Like I don't get stressed out now when I like, I wake up in my visions blurry. I'm like, you just need a second. Your brain doesn't have enough blood to process this. Like you just need to chill out for a second. Or when I start to feel sick, I just lay down. If I'm at home, I just lay down. And once that kind of passes, I get back up and I start moving again. And instead of thinking about like, why am I dizzy? Is my brain dying? Are my nerves dying? When I get that peristhesia, something we didn't talk about are like the different tests that you undergo to get diagnosed with POTS. And one of the tests that I had done was an EMG study, which is they stick electrodes and test all your major nerves and stuff. And thankfully, my are also functioning, the big nerves that control like muscles and stuff. It's just my smaller sensory nerves and nerves that control the arteries, which are not necessarily unimportant, but I don't worry that this is irreversible. And I'm not like, I'm gonna lose leg function or something like that fear is kind of quelled. Like I'm not concerned about not being able to walk. So my anxiety has gotten better just about how I feel and being able to understand and explain what's going on to myself. And I think that's really, really big. And that thought is why I've been pushing Lance to kind of like film this tea time. So it's been weeks. I've been putting it off just cause I'm tired, I guess, but yeah, I mean, I'm glad we did this. The one symptom that you've had that kind of makes a lot more sense was how you feel after your periods or during when they start. Oh yeah. Yeah. Blood loss feel really bad, like really bad. Yeah. Like lay down and shiver. Yeah. You got a lot of, how high was your heart rate this last one? 150. 150. Supine. So laying down. Laying down, yeah. For a while, maybe an hour. Yeah. I mean, it probably didn't stay there for the whole hour but we kept testing it. That's crazy. I mean, it makes sense though cause if your blood vessels won't constrict and you can't get blood back up to your brain, your body needs blood to your brain and you just beat that heart faster and faster and faster. Which, so this is kind of crazy and this is like a total sidebar, kind of cool. If you're someone who like struggles with like period issues, caffeine, which is in my doll, my doll's basically just like, I don't remember if it's ibuprofen or acetaminophen but it's one of those plus caffeine. Yeah. And I was like, it was that night that my heart rate was up so high. Now I'm remembering it. It was up so high and I, the caffeine I had was in the medicine that I took because I just like I couldn't recover. And so I knew that it would help with the blood loss and like I couldn't understand. I knew it had to relate with like vasoconstriction and I was like, why does caffeine work if my like adrenergic receptors don't work? Like that doesn't make sense to me. So I was like, how does caffeine cause vasoconstriction? And it actually just suppresses vasodilation. And I was like, oh, that's kind of cool but that's also kind of why caffeine can make your symptoms worse with POTS is because it still stimulates your sympathetic nervous system. And if it's, if your sympathetics are kind of high because if you have POTS, your body's like constrict your blood vessels and the blood vessels are like, no thank you. And your body's like, why aren't you doing this? It can put out more signals which is what causes the tachycardia and then the rest of your body is very sympathetic just your blood vessels aren't responding. And then when you add caffeine to that now you're on like overdrive sympathetics and that's why you get like tremors and all that stuff with that in POTS. And so I thought that was kind of cool. And caffeine can still work because it has a different mechanism of causing that vasoconstriction. Yeah, interesting. Yeah, total sidebar, sorry, off topic. No, that's good. But yeah, so I think to kind of summarize things if you are someone who is struggling with some type of chronic condition or illness or whatever and you can't figure it out and you just feel like there's no point in even doing this, like it's worth it. Like I truly feel like this diagnosis even though it hasn't changed much that I've done it's changed the way that my outlook is and it's changed the way that I approach things. And it's, I think, made life more enjoyable. Like I'm not in so much fear that I'm not going to be able to do things that I wanna do. I'm not gonna be super restricted. And there are ways that I can accommodate myself to allow me to do the things I wanna do. So like considering like maybe I do need assistance walking like maybe I need to have access to a cane or a wheelchair on days where I just can't go. And knowing now that like I can do that and that it's okay to do that and that there are other people with my condition who are doing that, like that, I don't know, it just makes it easier. So that is my advice to you is like keep going keep trying to figure it out and you know even if we don't fully understand what's going on just having some mild explanation of what's happening can be life changing. And they might figure it out, you know frickin' William Gunny and let's go. I wanna see what you're gonna put out next. Good guy. Keep funding him. Yeah, come on Dishonoromia, let's go. So we're gonna put some resources if you're interested in pots or curious about pots you have pots and you wanna know more about it we're gonna put some resources in the show notes below. I'll link to the articles, definitely and other foundations, resources, stuff like that. Thanks for watching. If you learned something hit the like button and subscribe to be notified when we release new videos. If you haven't seen the whole story I will link to our tea time playlist which is where Alice has kind of explained some of her other backstory. We mostly kept it out and I don't think you were lost but if you're curious you should watch this.