Episode 35 – POTS Diaries with Mike from AZ

00:00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:00:29 Jill (Host): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook, and today we have an episode of The POTS Diaries where we get to know someone in the POTS community and hear their story. So today we are speaking with Mike who kindly volunteered to share his experiences. I've never met him, so I'm as excited as you are to hear his story. I know he's super nice and super patient, but Mike thank you so much for joining us today.

00:00:57 Mike (Guest): No, thank you, Jill. Thank you for having me.

00:00:59 Jill (Host): So, let's start with some basics about you. What's your age and where are you?

00:01:06 Mike (Guest): I am 46 and I live in Scottsdale, Arizona. You can imagine temps are hot, especially around now. The, you know, A/C’s cool inside so someone pops. It's very doable and livable as long as you stay indoors.

00:01:18 Jill (Host): Yes, I have some memories of visiting Scottsdale because of the Mayo Clinic and thinking that just making it from the parking lot into the inside with air conditioning was quite a trial. So, hats off, living there. Where did you grow up and what were you like as a kid?

00:01:39 Mike (Guest): Growing up it was a little bit of here, there, everywhere. You know, military family, so moving about every five years. Born in Columbus, Ohio, but it was only there till five. And then moved to West Virginia down in the holler where, you know, the mountains are your backyard. California to 29 Palms, couldn't be more different. A year in Nevada and then ultimately to Arizona.

00:02:01 Jill (Host): So, all over.

00:02:02 Mike (Guest): And in terms of, you know what I was like as a kid growing up in those areas, I was - won't sugar coat it - you know, a bit of a punk, you know. Oldest of four and, you know, had to maintain my status as the king, if you will. Especially growing up in West Virginia where it's hypermasculine culture, Hatfield and McCoys type stuff. My nickname, you know, was Macho Mike. California, thankfully, when we moved there, got involved in Junior ROTC, 7th, 8th, and 9th grades. So they added some structure to my punkedness and much more thoughtful and thorough in terms of my actions. And so, it was a good thing.

00:02:35 Jill (Host): How would your friends or family describe your personality?

00:02:40 Mike (Guest): Yeah, it just depends on the day, depends on what I've done or what I haven't done. Depends on which one you asked. My sister was a kind hearted soul. Nothing bad to say about anybody. She’d never say a bad word about me even though, you know, we fist fought as kids. [Laughs] And so, you know, hats off to her. My brothers, they would still say I’m a punk, still say they're better than me, but they know the truth. My wife, you know, it depends on whether I have or haven't taken out the trash, or, you know, helped out with dinner. You know, something like that would determine what she has to say. My boys, they love me to death, but daddy's very stern and he has high expectations and depends on where they're in trouble. Most of the time they're absolutely, you know, happy to see me.

00:03:19 Jill (Host): So, if you had some years without POTS or any related health issues, how many of those years did you have? Like, did POTS start showing itself early in your life or late in life?

00:03:33 Mike (Guest): Probably like lots of POTS patients, I've gone back in time and reassessed what's happened in my life and looked at it through a POTS lens to try and understand, was this POTS or was it just something else. And ultimately, I've either had this for about 4 years or 30. And so, when I was 16 I was running track and I was running the 400 and, you know, I was that kid who ran and played basketball and football for 6 hours a day after school and didn't do his homework. Ultimately, I had endless energy, but for some reason this 400 - I could only get about halfway through it. I knew my heart rate was pegged and I felt really fatigued and sick, and my coach comes up to me. He's like, “Alright, what's going on [inaudible]? You got mono?” I didn’t know they call that the kissing disease back then, you know. He’s trying to make a joke of it, but ultimately my heart rate stayed up and went to various doctors and you know saw some sort of specialist in either Vegas or Phoenix. My mom was a nurse. So, you know, she paid attention to this stuff. She told me he did blood pressure readings in my arms and my legs, echoes, all those kinds of stuff. I just remember the guy said, “He'll grow out of it.” And so, off and on I've had some symptoms that I could probably attribute to POTS, or at least the precursors to it, but it really wasn't until 4 years ago that, you know, everything hit me hard. But, before that point in time, when I was 16, Oh, you know, I'd live life like I said – basketball, football. I was out playing all the time. Endless energy. I could eat what I want, do whatever I want. I was invincible. Practical joker, like I said, you know, fighting with the family and fighting with friends, going out and having fun, riding dirt bikes. Absolutely no fear. Had, you know, a really good time as a kid.

00:05:11 Jill (Host): So what about this time between age 16 and four years ago? Was POTS much of an issue during that time, or POTS symptoms or premonitions of POTS? Or did you grow out of it for a while?

00:05:24 Mike (Guest): I would have fluctuations, if you will. So I would wake up in the middle of the night gasping and that would come and go for years and I would have waking that really didn't make a whole lot of sense. Also, say if I exercised a lot, overnight I would be sweating. I'd be sweating and, you know, wake up drenched in sweat. Heart rate would be around 85 or so to 90, just sitting and doing nothing. And this would be just my regular day. And so it wasn't quite tachycardia, right? It wasn't 100, but you know, it was just right underneath it all the time. And so I just thought I was a rabbit instead of a tortoise. I thought I was, you know, move fast, live fast, die young - that's the way my body was wired. That's what I thought. Versus, you know, these folks where they exercise all the time and their heart rate’s, you know, 40 and it's extremely efficient and they're going to live to 100, you know. But ultimately, I would just have these symptoms that come and go. Looking back on that now, I at least had the precursors to it in terms of, if you think of fire, what do you need for fire? You need oxygen, fuel source, and heat. And if you have those three things in combination, you can get yourself a fire. You don't have one of them, you're not going to get it. And so ultimately, four years ago, my boss and I got something and it tipped us and tipped us both into POTS.

00:06:46 Jill (Host): Really?

00:06:47 Mike (Guest): Yep.

00:06:48 Jill (Host): Can you talk more about that?

00:06:49 Mike (Guest): Sure. My boss, we've been working together in the same office for probably going on three years and everything was fine. We were living life normal. We had kids, had stressors, all that kind of stuff, but you know, all the usual. Business professionals, and so you know there's stress around that, in terms of deadlines and projects and such. But at our annual meeting, he had some issues, you know, where he had to leave the meeting and go to the ER. And I heard about this. He wasn't actually a boss at the time. You know, I had actually taken another job right before that. You know, he had to go the ER and stuff and, you know, everyone was kind of gossiping about that and wondering what's going on with him. And then I had ended up in the ER. And so, he was talking to me and, you know, we were just talking to each other like, you know, “Hey, how you doing?” You know that sort of thing. “I heard you were, you know, in the ER.” I was like, “I heard you and you were in the ER.” We started comparing notes and in comparing notes it's like, “Wait a minute. You know, about 90% of what you're saying is exactly what I'm saying or have experienced. So what the heck is going on?” And, you know, when I was in the ER and got cardioverted, I had a doctor I was talking to about this. She said, “Hey Mike, you know from what you're telling me, you should look into dysautonomia.” And it kind of stuck with me a little bit. You know, I didn't go digging in too deep at that time. And he told me he went to the Mayo and got diagnosed with POTS. And when I looked up POTS after he told me and see that it's subgroup of dysautonomia, like wait a minute. This is no accident here. And this, you know, this preceded COVID stuff. So, my brain is like OK, what the heck have we been exposed to? And why him, why me? And ultimately I went to the Mayo and talked to Goodman...[Transcriber’s note: Dr. Brent Goodman is a well-known neurologist at Mayo Clinic in Scottsdale who treats POTS patients.]...and, you know, had them do workup and the tilt table test and all that kind of stuff. And they’re like, “Yeah, Mike, you know, you're orthostatic intolerant,” and ultimately, you know, based on my symptomology and like it's likely POTS.

00:08:46 Jill (Host): And so did you ever get answers about what the trigger was? Was it a virus? What was it?

00:08:53 Mike (Guest): We always want the answer, right? We want to know what was the genesis? But it just never seems to come. You know, I was looking at it being ignorant of the medical profession because I've never gone to the doctor. You know, growing up in West Virginia you rub dirt on it. You limp along, you play with twisted broken ankles, you know, you don't whine about pain and suffering, and certainly don't go see the doctor. They're just taking your money for nothing. [Laughs] So that's how I grew up and to that point I’d never gone to see a doctor other than when I was 16 that one time. Well, I should say that one period, you know, of seeing docs to get the “he'll grow out of it” answer. And so it was very interesting. I thought they should just be able to take his blood, my blood, do some sort of comparison analysis, and say “OK, yeah, you know, you both got this virus or that, were exposed to some sort of mold contaminating your work environment,” or whatever, but we were never able to get those answers. Ultimately, we just assume we caught the office cold. But it was some virus that, again, if you've got the right ingredients available, tips you into that POTS state. Because he was dizzy, I was dizzy, vertigo, I mean the heart racing for no reason, you know, all that good stuff.

00:10:09 Jill (Host): So, if I were to force you to be out of character for a second and to be a complainer, give us 30 seconds of complaints. What are your worst symptoms? What does POTS do to you?

00:10:19 Mike (Guest): At my worse or right now? Because at my worst was a laundry list, and I'm an analyst by trade - data and analytics, that's my thing. So of course I started collecting the data relative to myself. I don't care about the whole wisdom of crowds, medical methodology if they try to figure out what's wrong with you. I care about me, my symptoms, how my body reacts, and so I started taking my stats, charting it, and basically using technology to see if I could, you know, help solve my problems, and for the most part being able to do that. But this initially started happening, I mean I had my big toe on my left foot was not - just very weird and odd to me, but when you started asking questions and telling these little things, they're like “Oh, that could be significant. That could be like small fiber neuropathy or something to do with diabetes.” All these other things. But you know I was having my heart racing, I was having waking up freaked out episodes which were different from the gasping episodes. So waking up gasping's just kind of like sleep apnea, I was choking. Waking up freaked out is really different and it's almost like you woke up from a nightmare, but there wasn't a nightmare. Then my wife, she hated them because of course she's there to sleep next to me and all of a sudden, you know, I’m freaking out. AHHH. [Laughs] She's like wondering what the heck’s going on coming out from a deep sleep herself. But as with anything, you can become a little bit numb to things and so over time, you know, it didn't scare her as bad. But gastric symptoms where, you know, I would just kinda puke burping all the time. Having pressure in my chest, the muscles in my back would always be tight and even when, you know, I’d be on vacation or something where I'm not looking at the phone all the time, I'd still have this. And so, I would be driving and I wouldn't be able to keep my hand up. You know, like one of my hands would start to drop and I’d try to figure out, alright, you know, am I losing blood in the thing or am I losing feeling? And I couldn't figure out which. It just became extremely heavy. I got to the point where I was a little bit afraid to drive to work in the morning sometimes because I was having what I guess I would call displacement. It wasn’t dizziness, you know, I understand dizziness. You know, that's where everything is a little bit wobbly. This was I'm looking ahead and I looked to my right and in between looking to my right when I was looking ahead I kind of lose track of that. So it's almost like a blind spot. I got a gap in my brain of what happened between here and here. And just all these, you know, oddball symptoms. And as I list them out I'm looking at them like, I'm a hypochondriac. This this isn't, this isn't real, this isn't me. This isn't what's really going on. I'm just overanalyzing, over exaggerating what's happening to me. That's how I’d rationalize it. At least I was smart enough to list it all and to see, OK, what reoccurs, you know? What are one-offs and what are, you know, frequent occurrences? And start to realize, Oh quite a bit of these will happen all the time. I’m just not really paying attention to it until I write it down and see how the past month this has happened 12 times versus when I wasn't writing it down, I would feel like, Oh well, it happened maybe once or twice. You know, so writing it down really helped me understand, you know what is a true symptom and what was just some sort of one-off.

00:13:27 Jill (Host): Right. I think you bring up an interesting point, which is that for as much as a lot of POTS patients hate being gaslighted by others, some of us gaslight ourselves. And [Laughs] and by, you know, questioning because I've done it too. You look at the list of symptoms and you think, I must be nuts.

00:13:46 Mike (Guest): So, I had a provider sit down and talk to me about that.

00:13:49 Jill (Host): Oh, share.

00:13:50 Mike (Guest): I went to an endocrinologist and top docs here in Arizona and I said, you know, “I'm not feeling well. Here's the symptoms. Here's what's going on and, you know, I need you to do a work up.” You know, 'cause I do have hypothyroidism. And so I'm thinking it has to be due to that because of course, you know, thyroid regulates all kinds of systems. And so if it's out of whack, you know, that could explain these crazy symptoms all over the body. And he ran the labs. And, you know, sat me down and said, “Mike, labs are good. Everything is good. I think you need to stop focusing on your symptoms.” He basically was calling me hypochondriac without calling me a hypochondriac, and at that point in time he's saying it, you know, I'm still in the process. And I'm like, “Hey, you know I, I admit, you know, this is a lot, but I intuitively know something wrong. Something’s wrong. I don't like you people necessarily. I don't come visit you people. And so, you know, I'm here because something is wrong.” And ultimately a week after I saw him, I ended up in the ER and got cardioverted. I was just on a car ride going down to Tucson to see the Book of Mormon and stay at a resort. You know, my wife and I were going to enjoy my birthday. So it's like what's going on? It's absolute madness.

00:15:04 Jill (Host): Wow, I think sometimes some of us who are young females, when we encounter that, have to be reminded that it's not just young females who get that. Our listeners can't see you right now, but you're, you know, a big athletic guy who we wouldn't think as a stereotype to get that treatment from a doctor. But that's not the first time I've heard it.

00:15:25 Mike (Guest): From what I've seen, you know there is more bias towards women to treat them in a way, like this is just anxiety. You're working yourself up to basically calling it your fault, you know. And it's just because guys growing up, you know, were probably taught to be more assertive. But again, even then, being assertive doesn't necessarily, you know, get you your doc, you know, giving you the top shelf kind of treatment. They still think it's just anxiety, you’re working yourself up, you’re a hypochondriac. Ultimately, I would just say you as patient, you gotta push. This is your money, you're paying for this. Get your money’s worth. Make the doc say, “I see this or I don't see this. I know this, I don't know that.” Get him to put in writing because when they commit to put it in writing, then it’s real, and you know, versus what they say to you, because I've had plenty of doctors say, “Try this Mike, try that Mike.” You know, we even write it down on a little note and then I go try it. And ultimately when you go in for your next appointment they’re like, ”Well what medications are you on?” And you list the medications, well, they’ll list the medications for you they have in the system and it's not what you were handed on that little side note. And so it’s like, wait a minute, the doctor told me to do this. Why isn't that in there? And it's just the doctor kind of playing games to try things, but, you know, not ultimately commit to them.

00:16:38 Jill (Host): That’s great advice. So, you had mentioned that your symptoms are better now. Can you talk more about how you got them better?

00:16:51 Mike (Guest): Sure. I would have to say it came down to the fact that when this first hit me, I thought I was gonna die. You know, I really did. I thought I was checking out. I had devices that were measuring my heart rate and palpitations, things of that nature and I was having just an obscene amount of palpitations throughout the day. You know, it's not like the device is off, I was feeling it. Feel these things coming all the time. You know, I was sleep deprived and not knowing what's going on and kind of losing hope because I'm talking to these doctors and not getting anywhere. And so I got to the point where I just thought I am going to die, so I need to do the right things for my family. So, you know, I started writing down, you know, all the passwords and sites for the insurance and financial sites and things like that for my wife, you know, basically making sure they're all set up 'cause I wasn't sure I was gonna wake up in the morning. You know, that that's that's a tough place to be, you know, especially when you come from feeling invincible to absolutely hopeless. It wasn't like I wasn't trying to fight, but I had nothing else in my toolbox to figure out how to fight. I tried everything I knew, but you know, I was largely ignorant as what really is going on. You know, ultimately didn't die, you know, I wouldn’t be here talking to you. But I started out on the POTS regiments and reading up on it and learning what I wasn't being told. And as a male you get the same advice as pretty much a female in terms of that POTS regiment. But I'm 6’3”, 185 lbs, and Janey, who's 5’3” and, you know, 110 lbs maybe is probably getting the same advice in terms of the amount of water and salt and all that kind of stuff. I started, you know, experimenting and upping it. And realizing OK, when I do drink more water and you get the salt, then, you know, I do do better and the palpitations do go down. And then I focused on my sleep. I grew up as a mechanic as a kid, you know, turning a wrench. And I just know that a vehicle in disrepair, it kind of snowballs, and so you know more things break down and you get worse, you know, major repairs as a result. And so, I know the human body repairs at night in your sleep, and I wasn't sleeping well. So I started focusing on that. I bought a camera on Amazon for 60 bucks, you know, that does night vision and a memory card, and I recorded my sleep. And, you know, then I got a little, you know, wrist pulse oximeter that shows movement and an app called Snore Lab which would record my snoring and any events that happened, you know, like me waking up freaked out and gasping for air and all that kind of stuff. And I started using the movement data and the timestamps from the Snore Lab to be able to then look at the camera and see what was going on. Was it just my body doing this? Was I in some kind of odd position? What's happening to me at night that's impacting my sleep? And ultimately I'd find, well, the dog moves and for some reason when the dog would move, my body would just jerk. So I got the dog out. Then I would notice, hey around 4:00 o'clock, you know, in the summertime, light comes into the room and I'm getting up early as a result of that. So, blackout shades. You know, my wife would move or she would make a noise and all of a sudden I would jump. So I actually started using earplugs or a little bit of an earmuff so that I didn't hear these things. And ultimately I focused on getting some sleep and getting restorative sleep. And I noticed when I did that that I started improving and getting much better even with, you know, the salt and everything that I was doing and the hydration and the focus on electrolytes. Once I got to the point where it's like OK, you know, I kinda feel like halfway human, I'm still symptomatic, the doctors are saying, “Alright, Mike, you got to exercise.” So I started doing that, which just made everything worse, at least initially. I would basically fail fast and that was my modus operandi is, you know, fail fast, fail cheap. So, experiment, do it quick, learn from it and move on but don't take too big a leap. So experiment with running is, you know 15 minutes. See what happens. How much water did I intake? Log all of that. How much salt? Those sorts of things. And then alright, am I good? Now let's increase it. OK, if I increase it and I'm only on so much water and salt, becoming symptomatic. OK, so up the salt, up the water and see, you know, is there correlation and can I go longer as a result? Now let's move water and salt into actually, when you exercise versus just front loading and doing it before you do. And it was just this experimentation which has been over a couple years that has led me to be able to play 4 hours of basketball time if I want to. Now, for me to play those four hours of basketball, I've got to prepare. There's diet, there's the fluids and the electrolyte. There's make sure I'm prepared with sleep. Then you've got my stress levels down. But ultimately I can do it and I do because I’m still a competitive guy. I'd love to play basketball, throw elbows in the paint, you know, with my boys, and not my little boys, but you know, the guys that I kind of grew up with playing basketball, the guys at the gym. And you know, just just competing, because you know that makes me happy. Part of this too is finding the joys in your life and, you know, focusing on those as well, because I feel like you know, that helps my autonomic nervous system. Because when I do my tests, I see that my sympathetic system is on overdrive almost always, even when I feel good. They've done all kinds of HRV work, you know. [Transcriber’s note: HRV refers to heart rate variability – the measure of variation in time between each heart beat.] And I've read the research and with POTS patients they look, you know, for your high frequency to be low, and a lot of them define it as under 200. Mine’s under 100, just on a normal day when I wake up in the morning rested and relaxed. So I ultimately, I got to get my parasympathetic side of my nervous system boosted up as much as I can. I do breathing work to help out with that. Again, finding the joys in life and a lot of people say stay positive, but I think positive is relative. So I would define positive as it has a positive impact on your nervous system, you know? So, your parasympathetic is increased. Ultimately it's figuring out what those positive activities are for me and engaging in those, and not what people think, you know, should be positive for you or society does. Ultimately when I put it all together as a package, I can be asymptomatic if I choose.

00:22:58 Jill (Host): So that was actually my question. So when you do all of these things, and it sounds like you work really hard at it, can you be completely asymptomatic and normal? Or are there still parts of your life where POTS has an impact?

00:23:12 Mike (Guest): I would say I'm not 100% normal. I’m 100% functional. So I can function, but, you know, there's something going on in my head, in terms of chemicals and stuff like that, after they've done research and you know, hey, do you overdo it in terms of exercise? You're gonna be moody, you're gonna have cortisol shooting up through the roof, stuff like that. And ultimately I feel like I need to keep up with the exercise because it does keep me upright and keeps me completely functional, and so I also am trying to force an adaptation, if you will. The more exercise you do, the longer you can do it, and the more your body adapts to that. And so I'm trying to see alright, can I push this thing? And push it so far that, you know, maybe I don't have to keep up with it, in terms of my the regiment. But ultimately, at this point I do, and so I just do what I can. And I would say, you know, to borrow from a good book that I read written by Shannon Lee, who’s Bruce Lee’s daughter, it’s “Be water my friend.” I just I flow with it. It's basically having sit with POTS and feeling it and understanding it and how it impacts my body and then knowing what to do at any given point in time and develop those tools and tactics to be one with it, if you will. So when I first started, I was very combative. I wanted to kill this thing. I wanted to fight this thing, you know, I wanted to absolutely want to murder it and get it done and out of me. And then you know common realization that it fights back pretty hard, almost as hard as I do, and you know, I couldn't do that. When you can't, you know, win the war, what do you do? Well, you gotta figure out a way to make peace, and so you know just making peace with it and knowing that it's always going to be there, but trying to understand it, sit with it, and metaphorically talk with it to understand as best you can, you know, kind of like a best friend, like you would, and use that to function as highly as possible with it.

00:25:06 Jill (Host): Yeah, and you had mentioned that when you were young that you were quite macho and into the masculine culture and I'm guessing does POTS force you to say, OK, I gotta have more finesse than force?

00:25:23 Mike (Guest): Oh yeah. [Laughs] It humbles you like no other opponent you've ever gone up against. You know, it's because you can't punch it, you can't beat on it. The harder you try to do something like that, where you try to exert your will on it, the worse off you are. Again, I come from this hyper-masculine culture. I thought yoga was for girls, you know, that's the way I was brought up. And you know what? No, it's not. It actually is awesome, you know, it is something that, you know, and meditation too, helps you center yourself, calm yourself, get that sympathetic nervous system, that drive lowered, and get your body into that parasympathetic rest and digest mode. And so you have to change your tactics. Got to evolve with POTS, you know, or you're going to be miserable. And so yeah, hitting my head against the wall many, many, many times early on, finally wised up and smartened up, and realized, you know, I've got to evolve with this. The unofficial motto for the Marine Corps is Adapt, Overcome, and something to the extent of, you know, you basically got to be able to what’s called read and react. You gotta read the situation, react to it, learn from it, and then evolve.

00:26:28 Jill (Host): So, have you learned anything else from POTS?

00:26:30 Mike (Guest): You know, definitely a ton of medical jargon. [Laughs] And far more than I ever wanted to from doing the research and trying to understand what the heck the doctors are telling or you're not telling me, and you know, trying to figure out you know what I can try to better recover. What tools can I have in my toolbox? You can't always use a hammer, sometimes you need to have some specialized tools for specialized situations that'll make your life, you know, more improved and more efficient and effective at knocking out the symptoms, if you will, before it becomes a problem. I've learned to better prepare for exercise and I would say keep up in my later years. You know, my boys are five and six. I want to be playing basketball with them when they’re 15, 16. I gotta keep up, and that's probably one thing I wasn't doing. When I got hit with this four years ago, you know, when I talk about, you know, having ingredients to enable POTS, I was an analyst, I was sitting at a desk. I worked 10 hour days. I would be sitting for 6 to 8 hours straight just laser focused on that screen, stress is high, always putting out fires, eating the wrong things, not exercising, and really abusing my body in the way that I did when I was younger. But, you know, when you're, you know, 44, 42, you know, at those ages you can't do that anymore. Again, you gotta adapt, you can't look at the past and say, “Oh, you know, I want to be 20 again.” It's not the way life works. You don't get that. No one gets that. So again, you've got a come to the realization of where you are and what you are today and adapt to the situation. For me, I've learned how to live better, and it will probably ultimately will extend my life, unless there's like some one-off event, because of this, because I am eating the right things. I eat what food eats in terms of eating a lot of salads now. Before it was meat and potatoes. And my electrolytes, I never focused on those. I calculated it once. I probably got 1/4 of the recommended daily allowance of potassium on a daily basis. You know, now I'm getting the full load. And why? Because it’s good for the heart, you know, allows my heart to be strong when I have these palpitation episodes, you know, to just motor through. Built up some slack. Same thing with the magnesium and the sodium, understanding the sodium glucose pump and the fact that you want to optimize getting the sodium into bloodstream to enhance your blood volume, you gotta have sugar with it. So, all right, do you add sugar like a spoonful of it or are we talking you eat it with your fruits and other things that are natural sugars? So, I've learned how to, you know, do things like that and the timing of it. It’s been a lot of work. And most people don't want to do this work, but ultimately my goal again is to be playing with my kids, you know, at 15 and 16, playing basketball and keeping up with them and the competitor me says, you know, “Not just keeping up, but dominating. Don't show them weakness, especially at that age, because they'll take advantage of it. [Laughs] I should know.

00:29:25 Jill (Host): So, you sound like somebody who probably has long had a lot of good discipline, but it sounds like this has maybe even strengthened your discipline to do the work. And it sounds like it's paid off for you. Is that right?

00:29:36 Mike (Guest): Yeah. I realized what I could lose. I could lose my family, you know, early on this this hit me hard. I was telling my wife from not feeling like I can wake up the morning and die, to, hey I don't even know if I can work with this. I'm going into conference rooms and lying down on the floor while my heart thumping, my legs up on the wall and hope no one comes in and sees me like this, but I am in absolute survival mode at that point, you know, and don't care even if they do. Even sometimes just lying down on my desk and doing something like that. It just, it feels like absolute craziness now. And my wife and I, you know, early on talked through the struggles. She's crying and she's saying stuff like, you know, “I don't know who you are. [said with emotion] We used to be so good together.” And it was true, I was honest. [sniffles] I'm crying about this now, but and that happened years ago, but, you know, this this can take a lot from you. And so if you don't do the work, if you just take it for granted that you're going to get better, if you just hope the doctors are going to do the work for you, it's not, it's not going to happen. You know, so you've got to take responsibility for it, you know? That's the way I looked at it. This is my life. If I die, the doctors won't even know it. It's not like they get a death certificate that says oh, you know your patient offed. Sorry. It impacts me, and impacts my family. So I took responsibility. I became responsible for my care and figuring it out and going through those struggles and also being better communicating with my wife. And my kids, you know, hey Daddy doesn’t feel good right now. And, you know, here’s what's wrong, here's why. I've seen people where they take the route of fake it till you make it. Don't say anything is wrong. People hear that, they're just thinking you're whining, complaining and then look down on you. Well, yeah, coming from I come from, that's exactly where my head was at, but I realize that communication helps, even if you don't hear what you want to hear. Even if you don't hear, “Oh babe, you know that's OK. I'll go do this for you.” Or, you know, how about... I, I think just being honest helps us in terms of her knowing exactly where I'm at and what's going on, and being more accepting of it, you know, when I’m not in a good spot. But, you know, like I said, I feel like you gotta do work and if you do work you can get out of this tailspin most of you are in, especially when you're starting, you know, when you do that it can get better and does and you can get on top of and keep on top of it. And another thing it taught me too is I felt like the more I let it go on when I was in my bad spot, the more damage, like I said, you know, coming from that car mechanic mentality that could occur. And so I treated it like a sprint in the beginning, where going to many, many doctors, trying to figure out what's going on, and educating myself and go at it hard, but then, once I had enough information, it was, Alright. Now I realize I've got this for life. It's a marathon. And so how am I going to prepare and how am I going to continue on this marathon. And you can't just, you know, jump into a marathon and do it. You know, you're going to hurt yourself. I feel like, you know, that has been extremely beneficial, especially these last couple of years.

00:32:51 Jill (Host): So it sounds like you've done an amazing job of juggling a lot of things - the physical stuff, work related stuff, the relationship related stuff, and it sounds like that takes a whole lot of bandwidth to do that. And now I think my impression of you, and I imagine as our listeners are hearing you, they are hearing somebody who conquered this thing, who kicked butt, who rallied and overcame. And when you mentioned just briefly, that you did have times where you were laying on the floor of your conference room with your feet up against the wall and things like that, I almost feel myself being surprised, like, Oh, this guy did have those rough times. Is there any advice or message you would have for somebody who's laying on their floor right now with their feet up feeling stuck, you know? That and or what gave you the strength to power through when everything seemed pretty bleak? What were you thinking about?

00:34:00 Mike (Guest): To start with your second question, for me it was easy, it was my boys. My dad died when I was five, but I got hit with this, you know, right around the time, you know, they were starting to get to that age and, you know, you start to think about those things and you start to think about what it was like not growing up with a father and what it would be like for your kids. And the competitor in me, hyper-masculine culture, I think, helped me out greatly from that standpoint because I said, well, I'm going to kill myself trying. I'm going to put the fear aside, you know, and then I was - it's completely fearful - and I'm going to put that aside, and I'm going to do the work, you know, regardless of how I think it's going to hurt me. Again, to borrow from the book, “Be like water, my friend,” she talks about skillful frustration. That's how people grow. And so I approached it and I said, “I want to learn about this symptom. And I want to see if I do X if it impacts it or Y if it impacts it.” And I just went through and educated myself and experimented and tried and failed fabulously many, many, many, many times. But there were times where I would reach an insight that, you know, OK, if I do X I improved. So alright, I want to do that again. Does it work still? Yes. OK, great. How much improvement can I get, you know, with this using more, using less, and just putting in that that work in that effort with those skills and frustrations. It is absolutely frustrating, you know, going to the doctors and paying money and not getting advice that is tactically sound. You know, again, growing up in military, I want to know, you know, what do I need to do to improve myself? I don't want hypotheses. I don't want what works for people on average, I want to know for me, what helps me. That's what I need to do and then I need to know what those things are and keep them in my toolbox. Then we need to know when to use them. So, skillful frustrations. To answer the first part of your question, if you’re lying down in the conference room, legs up, you know, your heart’s pounding, you’re dizzy. You just wondering what's going on, you know, where did my life, you know, what did I do in my life to, you know, take this this wrong turn. Ultimately, I would say you got to get over the fear. It's the fear. The fear of what hasn't happened yet, the fear that it is going to kill you, and I say you gotta figure out how to get over the fear and start listening and understanding what your body is really telling you. I don't know what high blood pressure felt like or low blood pressure, but I took a blood pressure cuff and when I felt ill I started taking readings and see, Oh, OK, it's high right now. Oh, so that's what high blood pressure possibly feels like. And then again when I feel that same thing, take it again. Oh yeah, it’s high. This is what high blood pressure feels like. So when the doctor is saying high blood pressure, that's what he's talking about. OK, now we can have a real informed conversation about this. Same thing with heart rate. Heart rate’s high, heart rate’s low. Well, what exactly is that feel like? What does 90s feel like relative 180 relative to 240? You don't know unless you measure it. And so, you know, with that business background I have, it's it's measure and its monitor. And then you can manage. And this helped me with my doctors. You know, I've got a lot of tech tools, if you will. AliveCor Kardia - [Transcriber’s note: Kardia is a device paired with an app that records EKGs – see https://www.kardia.com/] That thing is a godsend because I can look at the EKG and I've learned how to read them and understand, Oh, I'm having PACs, verses having PVCs or skipped beats. And so then when I go to my doctor and I talked to him, it's like, “Hey Doc, you know, I was having skipped beats.” “How you know that?” “Well, here's the reading,” and it's a device that's FDA certified so they trust it, versus like say, an Apple Watch where it doesn't have the sensitivity to really take, you know, those types of readings. At one point I had atrial flutter. I diagnosed it before Mayo did. You know, I went into them saying, “Hey guys, I got atrial flutter.” And so, of course, when they're in the 15 second EKG and they see it and they’re like calling up the doctor like, “Oh, hey, your patient has atrial flutter. What do we need to do?” And, you know, doesn't realize I've already talked to doctor and told him what's going on. He's kind of told me, “Well, if it’s this, do this.” He’s already giving me instruction. She's kind of freaking out like, “Oh, what do we need to do next here?” Just getting yourself involved in the tools that can help you understand and manage your condition, I would say, it's going to help you out greatly, outside of just getting over that fear. And the last piece is, you know, like I talked about before, you gotta sit down, you gotta listen. You're not going to kill POTS. You can't fight it out of you. If you're passive, it's still not going to go away. You know, you can't be an ostrich with your head in the sand. It's going to be there when you pull it out. Sit down, talk to it, listen to it. Listen to it without judgment. Don't assume you're dying. Don't assume it's going to kill you, you know that sort of stuff. Listen and feel and try and understand what's going on. Try to figure out a way with the technology of explaining that to your doctor. Blood pressure, heart rate, you know, all those sorts of things.

00:39:11 Jill (Host): Yeah. So I feel like you're an awesome example of taking control, even if that means do a ton of trial and error with all the painful error that inevitably happens in trial and error. Work for it, and if you have to take 2 steps back for every 3 steps forward, that's all part of the process and just don't let it get you down. Is that what I’m hearing?

00:39:34 Mike (Guest): Yeah. If it gets you down, I would say that's OK, you're definitely going to have your bad days and you're going to have your good days. And if you're documenting the good days, that's actually beneficial for you. Don't take those for granted, because you can learn from those good days. You know you're documenting, you know, what you're having to eat, your intake in terms of fluids and stuff like that, and your medicines, you know, and things that you're feeling throughout the day, keep tabs on the spreadsheet. When you have a good day, you can see what led up to that and then you use that information to say, “OK, well, here's what I've done that leads up to a good day. Can I replicate that success?” And if you can, great! Again, now you've got a tool. Don't take those good days for granted and don't beat yourself up for the bad days 'cause they're going to come then they're going to be plentiful and you got to be able to just roll with it and realize that even though you're taking those two steps back, right, you know, one step forward and be able to start to climb. And it may be you’re just taking inches, inches a day, but do it. Take those inches and you gotta start somewhere, you know, you, you may want to take miles from the get go you may feel like you're entitled to the miles. I felt like I was entitled to it, that I should have been able to get better fast because I had access to got money, I've got good health care, I've got, you know, top docs. I felt entitled to getting well, you know, in months. And come to find out, no, doesn't matter. None of that matters. Ultimately, I had to be the one who kind of sat down and figured out myself, you know, and just, you know, learn what I could, you know, from those folks, and experiment and see what worked, what didn't and keep moving forward.

00:41:11 Jill (Host): That's great. And one thing that I have noticed is that, you know, on a scale of 1 to 10, If you feel like you're at a zero, the one good thing about being at a 0 is that if you can just move from 0 to 1, that's infinite improvement, right? You never get that big of a leap again, as you do when you're starting from 0. [Laughs] So there's a little bit of a bright side in that. OK so I just have two more questions for you. What do you wish more people knew about POTS?

00:41:46 Mike (Guest): I mean, general public, they're probably widely ignorant of it. I wish, you know, they actually knew it was a thing. There’s mixed messaging out there COVID long haulers, you know, they're starting to hear about that because the media is trying to make people more afraid about, you know, not having their COVID vaccines. But I guess - I have a marketing degree and ultimately I don’t like the word POTS. And it's just because it's called associate network in people brains and so POTS pot, pot, pot heads, lazy people, you know and and POTS patients can be perceived as that and and I think it just, I should say it propagates this stereotype that when you look at a POTS patient on the outside, they're just being lazy and it's just all in their head. And it's not. So if they could come over better term, you know, I wish they would do that. But like you said, you know looking at me, I look fine. You know, from what you're hearing. And things are good. The fact is, you know, you can't see it. People need to know and understand that they can't see it. You know, if I had to create something, I would say, you know, look at your children. When you've got a kid who's sick or they're saying they're sick and you read its situation wrong. So like, “Daddy, my tummy doesn't feel good,” and then they go off and they play. And you're like, “Tummy doesn't feel good. You know, they’re BS’ing me.” And then 10 minutes later, they’re throwing up. And you're like, Whoa, how did I miss that? And it's because you can't feel what that other person is feeling. And people don't always behave in a way that you think is, you know, in line with what it's sick is. Your perception of sick is different than theirs, and so just realize that, you know, hey POTS, folks, they they may look alright on the outside and they might have that smile. They're probably fabulous liars in terms of putting on the pretty face, and you know, making everything look OK, as much as we can. They could be really battling something, you know, that would just scare the bejesus out of you, if you had it. I think the general population, if they could understand that figure that out, they could probably show a lot more empathy, you know, to this group. Especially the doctors.

00:43:54 Jill (Host): And my last question is when I had asked for volunteers to speak about their POTS experience, why did you agree to let us share your story today?

00:44:06 Mike (Guest): I would say it’s just because I have had some success and I've been there on the deathbed, you know, at least that’s how I felt, and all the way to again, you know, playing four hours of basketball if I choose, you know. I can do whatever I want with my kids. And I feel like if my story could help anybody, great. Selfishly, I'm doing a lot of this research, not just for myself, but for my kids. One of my boys - I don't know - I feel like he might have those ingredients that someday he could tip into this condition. And I I don't I don't like that. And so I will push myself to the limits and figure out, you know, what works for me so that I can pass it on to him. And if others benefit along the way, great. You know, I'm not that selfish, but ultimately, you know, that's that's what's driving me?

00:44:56 Jill (Host): Well, thank you so much for sharing your story and all these great insights with us, and I'm so thrilled that you have been able to find something that helps you a lot. We really appreciate your letting us hear about it. And hey listeners, remember this is not medical advice. Consult your health care team about what's right for you, because we're all so different. But thank you for tuning in. Remember, you're not alone, and please join us again soon.

00:45:28 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast and I would add, if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2022 Standing Up to POTS. All rights reserved. [Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]