Diary with Quinton, a fitness enthusiast and Long COVID POTS patient

POTS Diary with Quinton [00:00:00] Jill Brook: Hello, fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of The POTS Diaries with Quinton. Quinton, thank you so much for joining us today. [00:00:13] Quinton: Yeah, no problem. It's great to be here. [00:00:16] Jill Brook: So, okay, we're excited to get to know you. What should we ask? What is Quinton 101? Tell us some basics about you. [00:00:23] Quinton: Okay, so I'm 28. I was born and raised in Cincinnati, Ohio. I do still live here. Always have had passions for fitness, health, medicine, specifically research. So yeah. [00:00:37] Jill Brook: Okay. Tell us more. Anything specific with your health medicine research? You look very fit. Do you have favorite activities? [00:00:45] Quinton: So as far as the fitness goes got into working out after high school. My workouts are very intense, very long. Obviously they're a little bit different now with POTS, but that's something that I have not given up, kind of refused to give that up. As far as medicine and research goes, looking at post- COVID research now. So that's where my POTS originated from. So now I'm keeping up with the research and trying to help fellow long haulers out that may be in the dark about some of this stuff. [00:01:19] Jill Brook: Oh, fantastic. Okay. Well, we're excited to dig in deeper to all that stuff. Maybe first, if we could get a little more intro about you. How would your friends or family describe your personality? [00:01:30] Quinton: Yeah, for sure. I'd say very funny. Always funny, never too serious. Cracking jokes, things like that. Very determined in whatever I do, whether that was schooling or fitness or really anything that's in front of me. Very determined to win. [00:01:47] Jill Brook: Oh, excellent. Okay. So speaking of winning, what are you good at? [00:01:52] Quinton: What am I good at? Sports, specifically. So, my whole entire life, I played all sports. As I got older, I wasn't doing sports competitively, so I golfed, which I haven't golfed yet since I've had POTS, because of the heat outside and things like that. But I'm trying to work up to that, do miss golfing with my dad and friends. So that's something hopefully I can get back to. [00:02:15] Jill Brook: Yeah. Okay. What other sports do you like? [00:02:18] Quinton: Well, I was in a Sunday basketball league. Obviously had to give that up as well, unfortunate, but do love watching sports. Live in Cincinnati, so you know the Bengals, obviously Joe Burrow, you know, taking us to the Super Bowl. Always having a good team now, something to look forward to, as well as the Reds doing well, but yeah, I enjoy watching any sport. [00:02:39] Jill Brook: Okay. Not picky. Excellent. So talk to us how your POTS started. What was your first sign? [00:02:45] Quinton: Yeah, so, this might be a little bit long, because I like to go into detail about it. So I got COVID for the second time in January of 2022. I was sick for about three or four days, nothing crazy, stayed at home, tested negative after seven days, and then went on with my life. Went back to the gym, two-hour workouts, basically just continued my life as normal, felt fine. And about two weeks after that, started getting really short of breath, my heart rate was erratic, and my heart rate was erratic doing normal things, standing to cook, brushing my teeth, showering was really bad, got very dizzy, had a lot of blood pooling in my feet, and I knew what these things were. Of course, obviously, I'm very in tune with my body. So I knew, you know, just standing there in the mornings when I woke up, my heart rate beating erratically was not normal. So to answer your question, my first symptoms were tachycardia, shortness of breath. And then I developed some noise sensitivity, which is, you know, under the dysautonomia umbrella. So things like that is really what I was experiencing to begin with. And that's kind of what set off like a red flag. [00:03:55] Jill Brook: So you're telling me that you had COVID the first time, got over it fine, had COVID the second time, got over it fine, and then two weeks later, bam. [00:04:05] Quinton: Yes, so the first time I had COVID was in 2020 of December. It messed my taste and smell up for a while. So nothing crazy. I would take that over this every single day. But then, yeah, I got it again. Mild infection, which we know now mild infections can lead to long COVID, of course, and disrupt the autonomic nervous system. So then, yeah, two weeks later, it's like my body just wanted to fail. Originally, what I thought was going on was myocarditis. With my age group and being a male and with the heart rate and things like that, you know, going up the steps was very hard. And as you can see, I am fit and in shape, so you can look at me and think, oh, you know, going up the stairs isn't a big deal. Well, it's a very big deal. [00:04:48] Jill Brook: Yeah. Okay. So what then? Did you try to just deal with it by yourself for a while? [00:04:52] Quinton: So what had happened, yeah, so I went to the ER twice in two weeks. I was actually pretty scared something was going on. I wanted to get my heart checked out, you know, get my troponin level, make sure, you know, there's no myocarditis or inflammation going on. As most POTS patients know, everything checked out very normal. All my blood work was fine. I got the slap of, this is anxiety. [00:05:15] Jill Brook: Really? [00:05:16] Quinton: I was, you know, very irritated about because I know my body very well. I know what anxiety is. I have anxiety. I do know, you know, the symptoms that come with it. I'm not anxious just standing up. You know, that's what I like to say. There's no reason for me to be anxious just standing there. So yeah, I went to the ER Didn't really get anything out of it, but did check out fine and healthy, which, made me a little bit happier that nothing, you know, serious was going on at that moment. So after that, what had happened was I reached out to a cardiologist that I had seen prior from my first COVID infection. And this individual referred me to an electrophysiologist that is in his practice. So I got very lucky. I know a lot of POTS patients go through years or multiple doctors. I actually got lucky and he ran a dysautonomia clinic, which is 15 minutes from my house. And he basically diagnosed me in 10 minutes. [00:06:15] Jill Brook: Wow. [00:06:16] Quinton: it wasn't a formal diagnosis, as you know. You know, it takes three to six months, but it was suspected and he said this can go away in three months. He gave me all the tools that basically I already know about you know the salt intake things like that. But not to get too ahead of me but I have hyperadrenergic POTS is what I have figured out. So basically the things that work for most POTS patients like the salt and things like that do not work for me. I still do them though. [00:06:45] Jill Brook: Okay. So talk more about that. How does it feel to you to be hyperadrenergic? [00:06:50] Quinton: Yeah most POTS patients get dizzy. Whenever I tell someone I have POTS, which is only about four people in my life, to be honest with you, close, close people, you know, they think, oh, are you going to pass out on me or are you so dizzy, like you get syncope, things like that? And I actually don't have that. Never have had that. So my blood pressure rises. So what I get when I'm standing. It's obviously tachycardic, very, very intense headaches. You know, I think since the blood pooling in my feet, it's very hard for my heart, you know, to bring the blood back up to my head, which results in, you know, those orthostatic headaches. [00:07:25] Jill Brook: Yeah. So can I ask you about something you kind of just casually said, which was you only tell about four people in your life? [00:07:33] Quinton: Yeah, for sure. Go ahead. [00:07:34] Jill Brook: Why not tell more people, any specific reason or you just haven't gotten around to it yet? [00:07:40] Quinton: so I can tell you the four people that I've told. So the first one was my mom. She was the first one to know. And then my father, so my dad, so that was two. And then at the time, a girl that I was seeing, she was a nurse, so she actually knew what POTS was. And then I assume, you know, family members know, but I haven't told them directly. So it's actually three. None of my friends know, friends that I, I mean, I was just at the gym Monday night with a friend, lifted chest. They don't know. Oh, I don't really have a reason. I guess my reason for not telling people is I know how it can be viewed. I think people really struggle to grasp exactly what it is. I like to tell my mom or dad, hey, you can look it up. It's not just my heart races when I stand. I honestly wish that was all it was. That would be easier to control and manage. But it's a lot more than that. It's just a full body thing. The blood pooling in my feet, my feet hurt from that, my legs hurt, the headaches, the dizziness that I get, you know, I look fine from the outside, I'm 28 in perfect health technically, and a shower will absolutely ruin me. [00:08:50] Jill Brook: Right? [00:08:52] Quinton: A lot of people don't know, like, I'm going to send this to my mom and dad to listen to, you know, I use a shower chair, which to other people may seem like, what is he using a shower chair for? Well, it takes the load off of my heart, my heart isn't racing when I'm sitting on that shower chair and I can also turn the water up warmer when I'm sitting instead of standing. [00:09:13] Jill Brook: So, yeah, I think a lot of people would be interested to hear that you can go to the gym and work out really hard, but showering gets you, and I relate to that, but talk more about that. [00:09:23] Quinton: Yeah, I was going to say, I always get that. My dad gives me a little bit of a hard time. He wants me to golf with him, which I understand, but he tells me, you can go to the gym, you know, why can't you go golfing with me or something like that or go to the Bengals games this year? And as bad as I want to, the way that I explain it is, is that, let's say, with my POTS, I have to plan everything. So, let's say, hey, I want to go to this Bengals game. I know that they're crowded, and you have to stand in line, still standing there, with my ticket, whatnot, waiting to get in. That right there, I would have to sit on the ground. My pride is too big to sit on the ground. I would probably stand there with a 180 heart rate before I would do that. That's just the way that I am, unfortunately, and I've been working on it since I've developed POTS, but... so yeah At the gym, I started out in March recumbent cycling. So hopefully this can help people that are listening that may not know what to do. So there's a lot of, you know, like the CHOP protocol, the Levine protocol, things like that. What I did was I started recumbent cycling, and I was going from a form of weightlifting, I mean, doing lots of weight... squats, deadlifts, et cetera, no limitations, to cycling on a bike for one minute and leaving. [00:10:35] Jill Brook: Wow. [00:10:35] Quinton: So I started at one minute. It was a very big difference. My heart rate was so high, and I was like out of breath, and I'm like, how is this possible? Two weeks ago, you know, I'm benching this and squatting this, and now getting up the stairs to the bike is it's like hell. So basically I started doing workouts on the ground and this was by myself. So I didn't have any help. I did research. I tried to figure out what I could do. I mean, I was doing bicep curls laying down. I was doing whatever I could, core exercises. I was just trying to basically retrain myself. I am on a beta blocker, but I am working up to, you know, I'm upright doing a lot of exercises standing. I do take breaks so whether it's on a bench or a medicine ball I'll grab in between sets just to bring my heart rate down because it's gonna stick at that 130 140 range if I'm standing there, feels terrible. I mean I don't honestly care what people think at the gym. Like my mom's asked me, you know what do you really think about you carrying this medicine ball around to sit on or whatever. I'm like don't know and I really don't care. No one's ever said anything; I don't think they care. I don't even think they see it. [00:11:43] Jill Brook: Right. Right. I have found for myself that my weightlifting tends to go pretty well so long as I alternate like a standing exercise with a supine exercise or laying down like I do all kinds of weird exercises, just to get my blood to pool in the right direction to offset whatever I did for the last few minutes. [00:12:05] Quinton: yep [00:12:05] Jill Brook: Is that a little bit what you're talking about? [00:12:08] Quinton: Yeah, exactly. So I mean, for instance, like today, so I was hitting biceps today, a lot of things with biceps are standing up, but in between my sets, I'll have a dumbbell on the ground or sometimes like a therapy balls that you sit on, and I'll do a set, and then I'll sit on that, bring my heart rate down. I feel normal, then I stand back up and do another set. You know, while that's not ideal for a normal person, of course, for me, I have to do that to be able to work out. And if that's what I have to do then I'm gonna do it. It's better than you know sitting around for me Especially when that's one of my biggest passions is working out. [00:12:45] Jill Brook: What about if you keep your calf muscles pumping? Does that help you to be upright for longer? [00:12:50] Quinton: I mean I have done that but it doesn't really do anything for me necessarily. Now one thing that was working in the beginning was compression stockings and that really helped but I know one of the questions that you're going to ask was, you know, how symptoms improved or progressed, and they have improved since developing POTS, part of my long COVID, which is good because I do have less blood poolling now. Originally, you know, I wanted to get a skin punch biopsy for small fiber neuropathy.. And that was on my behalf. I knew what that was, so I went to a neurologist and specifically asked for that, and she agreed to get it done. That did come back negative. [00:13:31] Jill Brook: Yeah, good job. But so do you attribute that improvement to anything in particular or do you think just time made it better? [00:13:39] Quinton: I get asked that a lot on the COVID long haulers Reddit group. A lot of us, me specifically, time. I took my beta blocker and worked out. You know, I'm not a medicine type person, not a natural supplement type person. So I didn't take anything of that nature. So I'd really just attribute it to time. I don't know, fitness helped, maybe. I can't pinpoint that and say that, but yeah. [00:14:06] Jill Brook: Did you do anything else? I know you said you're not that much into medicine or supplements, but anything else you did to try to improve? [00:14:13] Quinton: No, I, basically just the salt stuff. So, even prior to POTS, I always made sure I was hydrated with electrolytes, but now with POTS, I do LMNT packets, which are a thousand milligrams of sodium, so they're very high. I do like those. And for the POTS patients listening, If you email them and let you know that you have POTS, they do a free supplement pack. It's like 30 packets for you to try. Yeah, other than that, haven't really tried anything out there. [00:14:42] Jill Brook: okay. I just have to laugh, because sorry, LMNT, they're about to be bombarded. [00:14:47] Quinton: Oh, yeah. No, that's okay. I give that advice on Reddit. There's a POTS group on there that I let people know as well. Just try to help whenever I can. [00:14:54] Jill Brook: Okay, so time has done a lot, hopefully, for you. [00:14:58] Quinton: Yeah, for sure. Hopefully, as time goes on as well, but it is also scary to me that COVID is increasing right now with the new variant, you know. I try to tell my mom specifically, I don't know what's going to happen if I get it again. You know, there's potential for ME/CFS with long COVID. So a lot of the long COVID patients do reach the criteria for chronic fatigue syndrome, which many POTS patients have comorbidity with. I just want to stay away from getting COVID again because I know I'm young and healthy and that's what everyone thinks, but these are the people suffering the most usually is in a 20 to 45 range group with long COVID. I mean, it can ruin everything. People have lost their livelihoods, their jobs, you know, everything, unfortunately. [00:15:44] Jill Brook: For sure. So you had mentioned that you're kind of into research, so is that one thing you do is kind of like research ways to hopefully avoid getting it again or avoid having consequences if you do? And have you come up with any sort of plan, like do you do anything to try to protect yourself? [00:16:01] Quinton: So yeah, so I don't specifically research ways to avoid it, but I do research on things that are helping people with like acute infection. So like when you have acute COVID, things that you can take. So like Paxlovid. I do know there is, you know, things out there about rebound COVID after you're off of it, but it does reduce the likelihood of it, as well as statins, as we know, you know, COVID clots the blood. So yeah, I mean, but my research, more things that I research is more about, you know, the post COVID, the effects it's having on the autonomic nervous system, you know, the dysregulation of basically full body and all of these problems that are coming along with it. When people were running marathons, waking up two weeks after COVID, and you know, they can't even get out of bed, things like that. You know, the people with ME/CFS washing the dishes and falling into this fatigue where they're in the bed and, you know, having to count their spoons as they say. And it's just sad to me that a lot of people don't know about it is really what it is. Because to be quite frank with you, prior to me getting long COVID, I knew about long COVID, but not exactly what it entailed. And things like that. So now I'm kind of trying to advocate for it, you know, try to help as much as I can when I can. [00:17:14] Jill Brook: Oh, that's great. So, can you give us a feeling for where you were at when you were at your worst and where you are now in terms of how functional you are? [00:17:25] Quinton: Yeah, for sure. So I was at the bottom, to be quite frank with you, the very, very bottom. When it first happened, of course I was scared. Honestly, I didn't know what was going on. So every time I stepped out of bed, I had all these symptoms rushing at me. And this adrenaline, my body said, get back into bed and lay down. So that is what I did. I was in the bed for probably two to three weeks and I wasn't really eating. I was drinking, cause that was one of the things I knew to stay hydrated, of course. I was down to about 139 pounds. I lost a bunch of weight. Just wasn't in a good spot mentally, quite frankly, but you know, where things were going, I was depressed about it. Just trying to figure out, is this what life is going to be like forever? As anyone can imagine, if they're in that spot, they wonder, is this forever? [00:18:16] Jill Brook: Yeah. [00:18:17] Quinton: So now, looking back on it, very thankful that, you know, I kind of stuck with it and pulled through and said, you know, I'm gonna try to get better as I can. I mean, sometimes you can't help what your body does, but you can do as much as you can. And that's really what I started with. I started small and incrementally built up to where I'm at now. And I wanted to do this podcast because I honestly hope that it can help other people that were maybe where I was at. And it doesn't matter that I was there for only a month or two, really, really low. They can be there years, whatever. It's never too late to start is what I want to let people know. [00:18:55] Jill Brook: Yeah, yeah, also, I think it's so good for people to hear, because obviously, you're so upbeat, and you're so energetic. But what's sticking out in my mind is you started with just one minute on that recumbent bike. [00:19:07] Quinton: Yes, so one minute and meticulous about wearing my Apple watch, it never comes off. One minute and I still have all of the screenshots, they're in my fitness. One minute, my average heart rate, this was unmedicated, was about 170. So as we can imagine, that is high. Just for recumbent biking, nothing crazy, not cycling fast, nothing intense. And then I'd get off and, you know, blood's pooling at my feet, and I'd have to sit there and raise them against the wall at the gym. How embarrassing, but whatever. To now, I don't even do recumbent biking. It's kind of like a, not a waste of my time, but... I can do bigger and better things now, so I focus on those things. But yeah, hopefully that does help people. [00:19:51] Jill Brook: yeah, okay. So how functional are you now? We know you use a shower chair. But other than that, it sounds like like your friends don't even notice or Where are you at? [00:20:00] Quinton: Let me tell you this. I'm very good at hiding things. So, I could be dying and they wouldn't know, probably. Seriously. But I would say, functionality wise. So, I know there was a question that you were supposed to ask about work. I had taken time off. Totally quit. My symptoms were way too extreme. My symptoms are the worst in the morning. Of course, that's when, you know, most of us work, and having to go into work, just, I was not functional to do that, so I am now starting a new position in September as a fraud analyst, and that will be on site, which I'm pretty nervous about, because my symptoms, like I said, are pretty bad in the morning still. My heart rate's super high, even though I'm on medicine. But just gonna have to wake up earlier and kind of even keel it out to try to go in and have a normal heart rate type thing. But I am nervous about starting that. But as far as functionability goes, I would say in the beginning I was about 2%, I would say now, daily, 80 to 90. You know, there's self limitations. There's things that I can't do that I want to, for instance, that golf, playing basketball you know, going to certain events because I have to plan it out, which is one of the things that sucks. But yeah, about 80 to 90% I'd say. [00:21:11] Jill Brook: So what are new activities that you enjoy doing to replace some of those things that don't work for you anymore? [00:21:17] Quinton: Yeah. There for a while, when I was at my worst, I started painting, and I am not artistic at all, I can barely draw a stick figure, but I did enjoy, you know, painting on some canvases, it's just some freehand type painting stuff, it wasn't like drawing stuff, painting, it was just, you know, painting objects. I really enjoyed that, and then I got into skin care, so taking care of my skin, so these routines that I've kept, which really helped me, you know, gain some confidence, feel better about myself. So little things like that brought me joy. [00:21:52] Jill Brook: Nice. Smart. Is there anything that you know now about living with POTS that you wish you had known sooner? [00:21:59] Quinton: I would say that knowing every day is different and that's honestly the truth. Yesterday I could, let's say, do this activity and feel this way. Well today I could be wanting to just stay in the bed, quite frankly, and just be tachycardic all day type thing. It's just different day by day or week by week let's say. And another thing is that I've noticed is I've had a few sicknesses, few colds, or whatnot sinus infections let's say. All those ruin me now. I mean those put me into a flare for two to three weeks so with a cold before I could go to the gym and do whatever I want. Now, no, standing up just to go get something to eat is crazy if I'm sick. [00:22:44] Jill Brook: So what it sounds like is you kind of just roll with things. You don't let it get to you too much, and if you have to spend a day in bed, you do it. And it's not the end of the world, and you just move on. [00:22:53] Quinton: Yeah, for sure. I think you have to because I can't in the beginning of this I had to dwell on I basically you know mourning the loss of my old self as I would say and that that's what took the longest but now you know this is the new me. I'm living with it, you know there's nothing wrong with it. I'm still able to do most things. I always look at it as things could be worse. So, you know, I'm kind of thankful now for being in good health, basically. One thing chronic illness has taught me, you know, with POTS is that I'm thankful to still be here and able to do things. It's really opened my mind up that someone next to me could be going through something similar and you don't see it because it's invisible. So it's definitely changed my perspective. [00:23:36] Jill Brook: Yeah. So do you have anything that you absolutely have to do every day to keep feeling good, like any sort of routine? [00:23:44] Quinton: Oh, yeah, well, first I got to take my medicine. So I'm on a beta blocker, low dose beta blocker, which really helps me, which I have been able to cut down dosage wise since the beginning, which is good. Other than that, I do like to stay hydrated, so before I go to the gym, I make an electrolyte drink. It's not homemade or anything, it's just, it depends on what I'm feeling that day, whether it's liquid IV or LMNT or some hydration powder, I like to have that. And then, I know this is gonna sound crazy, but with hyperadrenergic POTS, you can, well, I don't wanna say for all, but you can have caffeine. For me, there's not a negative or positive effect of it, but I do like drinking preworkout, but it's only 100 milligrams of caffeine, it's nothing crazy. So, and I built up to that, kinda, to figure out what I could do. I figured out that more than 100 is too much. So I do have that, it's only three days a week I do that. I work out seven, and I only do that three times a week so I don't, you know, overkill with it. But those three things. [00:24:47] Jill Brook: Right. So you're very intentional is what it sounds like. You're careful, you kind of dial it in, you use a little bit of trial and error to find what works for you, and then you are very intentional. [00:24:57] Quinton: I'm very meticulous in my ways, I feel like, with things that I do. I kind of, fortunately, I could, in the beginning of all this, I could advocate for myself. I was not gonna let a doctor tell me that this was anxiety. And to get back to the diagnosis. The electrophysiologist was not going to put me on medicine. I said, look, I can't do anything. We're going to do a beta blocker. [00:25:20] Jill Brook: And that worked? [00:25:22] Quinton: Yeah. I think he understood that with my background and things he knew that I was knowledgeable and knew what I was talking about so we could trial and error with it. You know, there was other things he wanted to put me on. The other POTS medications, like midodrine and things like that. But I declined those and I was like, let's do a low dose beta blocker and see how that works. Just because I just want to bring the tachycardia down. And yeah, it worked. [00:25:44] Jill Brook: That's fantastic. Yeah. So it just came naturally to you to kind of advocate for yourself. [00:25:49] Quinton: Yeah, definitely. Which I'm lucky that that happened that way. I do know from reading the stories on here or listening to others that, you know, They're not as fortunate as that. They go through plenty of doctors and I know specifically women, you know, 10 years to get a diagnosis and I'm like, that's absolutely insane, but the one positive out of this though, I do think with COVID is more research being done with POTS, it's on the TV now, you know, CBS talking about it, NBC, things like that. I do think that this is the most important time with the most important research and there should be things that come out of it that potentially can help people even with, you know, post COVID POTS or POTS prior to, whether they got it from COVID or whatever. [00:26:36] Jill Brook: Yeah, absolutely. And I really appreciate your upbeat attitude about all of this. Like when you mentioned that you had, you know, maybe only 2% functionality at one point and how it was really tough. Like, it's almost hard to imagine that now because you are so upbeat and energetic now. But can I ask, does that just come naturally? Or do you have any strategies that help keep you positive? Like, do you have any coping strategies to share with anybody? [00:27:01] Quinton: Yeah, so if you were to have interviewed me when I first applied for this back last year, it probably would have been way different because of the spot I was in. So of course I wouldn't have had an upbeat attitude because I didn't know what the future was going to hold. I was very, very angry, like, at the world. Like, I was just mad at the situation I was in, even though, you know, others were going through it. And that's something that comforted me was, you know, knowing that others were going through it. I talked to people online all the time, but I don't really have any, I don't have any coping mechanisms particular. Yeah, I don't really do anything specifically, I mean, working out, I do think that's my natural antidepressant, as I call it. That's something that, you know, takes my mind off of things and eases my anxieties. [00:27:49] Jill Brook: That's great. Okay, are you up for a speed round where we ask you to just say the first thing that comes to your mind? [00:27:55] Quinton: Oh, yeah, we can do that. [00:27:57] Jill Brook: Awesome, okay, what's your favorite way to get salt? [00:28:01] Quinton: Those LMNT packets. [00:28:03] Jill Brook: What drink do you find the most hydrating? [00:28:06] Quinton: So I like the Gatorlytes, they have Gatorlyte zero now, so I do drink those instead. [00:28:11] Jill Brook: What's your favorite time of the day and why? [00:28:13] Quinton: Oh, late night for sure, least symptomatic and naturally I'm a night owl, I like staying up late. [00:28:18] Jill Brook: Where is your favorite place to spend time and why? [00:28:22] Quinton: My room, where I'm at right now, this is just where I feel most comfortable, my LED lights are on, just the mood is right. [00:28:29] Jill Brook: What is one word that describes what it's like living with POTS? [00:28:34] Quinton: Exhausting. [00:28:35] Jill Brook: What is some good advice that you try to live by? [00:28:39] Quinton: So I was told once by a college professor in my master's program that a narrow focus brings big results. So I think the number one reason people give up so fast is because they tend to look at how far they still have to go instead of how far they came. So it's a series of small wins that are most significant in success. I think that's huge with POTS because it's very small incremental things. A win is a win. [00:29:04] Jill Brook: Yeah, yeah, yeah. Speaking of small, what is something small or inexpensive that brings you comfort or joy? [00:29:11] Quinton: I would say someone telling me that they're proud of me or I'm a big fan of milkshakes. [00:29:18] Jill Brook: Nice. [00:29:20] Quinton: So yeah, those. [00:29:20] Jill Brook: Spanning the whole thing there. Right. Who is somebody that you admire? [00:29:25] Quinton: I know this is going to sound crazy or weird, but I don't particularly admire anybody, but I do admire people who can overcome any obstacle and keep going for themselves or those around them. [00:29:36] Jill Brook: What's your favorite food? [00:29:37] Quinton: Oh, chicken, that's all I eat. [00:29:39] Jill Brook: What's something that you're proud of? [00:29:42] Quinton: Earning my bachelor's and master's degree. [00:29:45] Jill Brook: What's your master's in? [00:29:46] Quinton: So I have an MBA. [00:29:47] Jill Brook: Oh, very nice. What is the toughest thing about POTS? [00:29:52] Quinton: That's a good one. Those around me not understanding how limiting it can be, that it is truly invisible. And I have to take in my symptoms for any event or anything that we're going to do. [00:30:04] Jill Brook: What's an activity that you can enjoy even when you're feeling really POTSie? [00:30:09] Quinton: I like to watch a lot of podcasts on YouTube, whether that's with sports or science. I like to learn so I can always surf the web and still do research in my free time if I'm in a flare. [00:30:19] Jill Brook: Nice. Do you have any tricks for falling asleep? [00:30:23] Quinton: I am not the person to talk about that because I cannot fall asleep for nothing, no medicine nothing works. [00:30:28] Jill Brook: Okay. [00:30:29] Quinton: So nope. [00:30:30] Jill Brook: Do you have any tricks for getting more energy when you need it? [00:30:33] Quinton: More energy yeah, so for the ones that can't drink caffeine, I do like to take in energy chews, which are carb heavy, but I know carbs can make people tachycardic, but those do help me. [00:30:47] Jill Brook: What is a gift that you would have sent to every POTS patient on the planet if you had infinite funds? [00:30:54] Quinton: For sure, so a couple of things I would send. So this is gonna be a POTS care package. So, you know, the LMNT packets or liquid IV, shower chair, and compression stockings. That gets you started. [00:31:07] Jill Brook: Nice, nice. With a big bow on top since you have infinite funds. [00:31:11] Quinton: There it is. [00:31:12] Jill Brook: What is something that you are grateful for? [00:31:14] Quinton: Nowadays, good health. [00:31:16] Jill Brook: Okay, can you finish these sentences please? I love it when... [00:31:21] Quinton: I love it when I'm not in a flare. [00:31:25] Jill Brook: I hate it when... [00:31:27] Quinton: My symptoms ruin my day or my plans. [00:31:29] Jill Brook: People might suspect you're a POTSie when... [00:31:33] Quinton: They see a shower chair and me downing salt. [00:31:36] Jill Brook: Have you ever had to sit down or lie down in a weird place because of POTS, and if so, where was the weirdest? [00:31:42] Quinton: Yes, not many times, but when it did happen in line at Chipotle, I laid down and feet up against the wall. The guy next to me asked me if I needed the paramedics. [00:31:53] Jill Brook: And what did you say? [00:31:55] Quinton: Oh, I said, no, I'm fine. Just gimme a couple minutes. He probably thought I was crazy. [00:32:00] Jill Brook: Okay, I just have a couple more questions. What do you wish more people knew about POTS? [00:32:06] Quinton: The number one thing I wish they knew is that it is not anxiety. And then the second thing is, is that it's not just, I know the criteria is the 30 beats per minute, but it is not just a high heart rate. I preach that to my mom and dad. It's full body. There's so many more symptoms I'm not obviously gonna get into because there's so many but it's a lot more than just that. If it was just my heart rate I'd be I wouldn't care, honestly. [00:32:33] Jill Brook: I agree with you. I think it is named for its least bothersome symptom. [00:32:37] Quinton: Yep, for sure. [00:32:39] Jill Brook: Yeah, is there anything you'd like to say to your fellow POTS patients out there listening? [00:32:45] Quinton: Yeah, for sure. Hopefully I led by a good example of basically keep going. One thing is don't let anyone else tell you how you should feel or how you feel. Don't let anyone make you feel bad for having to cancel plans or things like that, you know I see people post all the time about feeling bad, we have a condition, we have an actual health problem, so you know your body best, don't ruin your health for someone else, so right now also is a good time for the POTS community, more research is being done than ever before, so hopefully this helps a lot of us and we'll stay tuned to figure out what comes out of that. [00:33:21] Jill Brook: Awesome. Great message. Okay. Last question. Why did you agree to let us share your story today? [00:33:28] Quinton: Because I think that I served by a good example. I've improved and I wish that there was someone kind of like myself that I could have heard in the beginning. Not to sound too indulged with myself, obviously, but I was looking for any positive success story out there. I was keyboard searching things on Reddit, Google, Facebook. success stories you know what people were taking, what they were doing. I know we're desperate to get better when we're at the bottom so that's that's where I was. So I agreed to do this to you know hopefully help people whether that was with the advice that I gave or you know things like that talking about my fitness history. [00:34:05] Jill Brook: Excellent. Well, thank you so much and we're so happy that you have come so far and we're really grateful that you're showing other people that it's possible. Really nice to meet you. [00:34:14] Quinton: And then is that 5k 10k, are you gonna be participating in that? [00:34:20] Jill Brook: Yes, absolutely. There's actually not a 10K, it's a 2K, 5K, but you're welcome to do 10 if you want to. [00:34:26] Quinton: No, no. Yeah, I'm gonna do, I guess, the virtual one. I got the shirt the other day, but yeah, I was just curious as to if you were doing that as well. [00:34:35] Jill Brook: Excellent. Right on. Yes. And if you send us a picture of you wearing the shirt and doing the run, we will love to put it online and show the world. [00:34:44] Quinton: Yeah, I can definitely do that. Sounds good. [00:34:48] Jill Brook: Awesome. Well, Quinton, thank you for sharing your story and your insights with us. We so appreciate it. And we just wish you all the best going forward. [00:34:56] Quinton: Yeah, that's no problem, thanks for having me. [00:34:59] Jill Brook: Okay listeners, hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening, remember you're not alone, and please join us again soon.