Episode 16: POTS Diaries with Rob Link: https://tinyurl.com/4h5t4kyv

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 (Standing Up to POTS): 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 Rob, who volunteered to share his story when I asked for some men to step forward to tell us about their experience. Rob, thank you so much for joining us today.

00:00:55 Rob (Guest): Yeah, it's great to be here. Thanks for having me.

00:00:58 Jill (Standing Up to POTS): So maybe we can start out with just some basics about you, like what's your age, where did you grow up, and where do you live now?

00:01:06 Rob (Guest): I'm 34 and I grew up in Birmingham, Alabama and that's where I currently am.

00:01:12 Jill (Standing Up to POTS): So how do you not have a Southern accent?

00:01:16 Rob (Guest): (laughs) Lots of practice.

00:01:20 Jill (Standing Up to POTS): So can you just give us a snippet like what were you like as a little kid?

00:01:25 Rob (Guest): Curious, always curious. You know, pretty active, kind of played outside a lot. Was into whatever fad it was at the time - Pokémon, video games, that kind of stuff.

00:01:37 Jill (Standing Up to POTS): And so now like, how would your friends or family describe your personality?

00:01:43 Rob (Guest): Patient, kind, sweet, and probably sometimes irreverent.

00:01:48 Jill (Standing Up to POTS): OK, so if we were to force you to brag about yourself, what would you say? What are you good at or what are you proud of?

00:01:56 Rob (Guest): What am I good at? I feel like I have pushed bodybuilding with chronic illness just about as far as you can. I don't know of too many other people who have done what I've done. And you know, I think hopefully people are out there I'm just not aware of, but I feel like I've pushed it about as far as you can push it, and I'm pretty proud of that.

00:02:23 Jill (Standing Up to POTS): Ooh, I'm excited to hear more about that. OK, but first I guess I'm hoping to hear, like, did you have some years of your life before any chronic illness set in, and if so, how many of those did you have?

00:02:33 Rob (Guest): Yeah, well you know, looking back I go, “OK, I think this was a POTS symptom or this was a POTS symptom,” but it was not debilitating until I was probably around 23. So, I would say I had relatively normal health. I got sick a lot, I think when I was early, maybe like second, third - first, second, third grade, just with normal kind of childhood kid illnesses. But I would say my life was somewhat normal up until about age 23.

00:03:09 Jill (Standing Up to POTS): So can you give us kind of a snapshot of what that life looked like before you had POTS show up?

00:03:13 Rob (Guest): Sure. I went through school - high school - pretty fine. Went to college, decided that's not exactly the track I wanted to be in, so I enrolled in a technical school for a year and worked as an automotive technician for Nissan and then decided that's not what I wanted to do. So I actually went back to school. And when I was back at university, that's when the dysautonomia really kicked up and I really began noticing symptoms. Kind of really bad timing on that.

00:03:46 Jill (Standing Up to POTS): Wow. So what was your first sign that something was really wrong?

00:03:52 Rob (Guest): Lack of refreshing sleep was my first main symptom and continues to be one of my most debilitating.

00:03:59 Jill (Standing Up to POTS): So when you say that like how many hours would you spend in bed and what's the experience of unrefreshing sleep for people who maybe aren't familiar with it?

00:04:06 Rob (Guest): So unrefreshing sleep, I would describe as, the time in bed is almost irrelevant. It's how you feel when you wake up. That's really the real determining factor, and that's how I would describe unrefreshing sleep, or non-restorative sleep, as it's sometimes known.

00:04:26 Jill (Standing Up to POTS): Yeah, so at the time, what did you think was going on, like, did you seek medical attention for that? Or how did you deal with it?

00:04:34 Rob (Guest): I did seek medical attention for that, and I've had an interesting relationship with medical systems as I'm sure many people who have this disease have had. Yeah, I sought treatment for it and the first doctor I saw initially said, you know, “Oh you're too young,” you know the typical, “Oh, you're too young to be this sick.” And then I actually went to a sleep specialist who was the first one to mention dysautonomia and I got tested for it here in Birmingham and did the tilt test and I didn't pass out completely, but it came back positive. And they were just like, “Oh, exercise and beta blockers,” and kind of sent me on my way. And as we know now it's a much more complex disorder than simply a fast heart rate, right? And totally did not address the sleep. And when I was there talking about, “Well, I’m here 'cause I can't sleep.” “Well, you need to see a sleep doctor.” “Well, the doctor sent over here,” and you get that run around. So, I didn't get anywhere locally, so I essentially asked my doctor to referral for the Mayo Clinic and went up there in 2013 and had to do another tilt table. I actually passed out on the tilt table this time. Which, I'm glad I didn't pass out on the first one, 'cause the restraints weren't exactly very much on the first one. The one at Mayo Clinic they have you strapped in six different ways. But, I saw a sleep specialist and he too was very dismissive of the unrefreshing sleep. He - no joke - suggested I get into building model airplanes to get my mind off of it.

00:06:04 Jill (Standing Up to POTS): (laughs) I'm sorry, I just have to pause you there a second so that we can all smack our foreheads, shake our heads, laugh so that we don't scream. He thought building model airplanes was going to be your solution?

00:06:31 Rob (Guest): Well, I think it was just you know, if you can't dazzle them with brilliance, baffle them with BS approach to medicine. That's what he said. It was just dismissiveness and possibly some gaslighting there and all kinds of unhealthy dynamics. But uhm, yeah, that's what he said. And even at Mayo you kind of have a main doctor who's kind of your coordinator - I'm sure you've talked to people or you've been through that. And they basically said, you know, “Here's midodrine to get your blood pressure up, you're a moving target, you know, we can fix that,” and still treated it as a cardiac only issue. (Transcriber’s note: midodrine is prescribed to treat hypotension.)

00:07:06 Rob (Guest): Now I did have orthostatic intolerance, tachycardia - those were things I had, but they didn't address any of the sleep problems or gastrointestinal problems or even the brain fog or cognitive issues that come along with it as well. And this is in 2013, so I don't know what the evolution of that is on the practitioner side, whether they've evolved their thinking very much on that or not. I think COVID may be a big catalyst for that, and I think that's one of the big silver linings in all of this is we're seeing, “Oh yeah, viruses do have way more of an effect on the human body than we previously thought.”

00:07:40 Jill (Standing Up to POTS): Did you trace your dysautonomia back to any particular trigger, like a virus or anything?

00:07:47 Rob (Guest): You know, I've thought a lot about that and the sick – most ill - I've ever been, aside from all the stuff I deal with now, was when I was just a few months old I had a very serious case of viral encephalitis and almost died. I was in the hospital and, you know, I've mentioned that to doctors they were like, “Oh well, you know,” they just brushed it off, whatever. But now that we've gone through COVID, I think that may have been the catalyst as best I can tell, the best evidence I have for what I deal with currently.

00:08:19 Jill (Standing Up to POTS): So what do you deal with currently? How many of the symptoms have you been able to improve? How many are still there?

00:08:28 Rob (Guest): All of the symptoms are still there that I originally had. Some have gotten better through the weight training that I do. The cardiac issues have improved. And I am still orthostatically intolerant. I still get really fast heart rate. I'm heat intolerant. The symptoms that have more of an impact on me are the unrefreshing sleep and the gastrointestinal issues. And I haven't really - I've made some progress with that, but those are the ones that have been really tough to crack.

00:08:59 Jill (Standing Up to POTS): How do you deal with heat in Alabama?

00:09:03 Rob (Guest): Air conditioning. I become kind of nocturnal in the summertime. I get out and do stuff at night. That's how I deal with it. (laughs)

00:09:10 Jill (Standing Up to POTS): I tried to do that, and it just did not work for me, and I eventually actually moved to Alaska to avoid heat. And that was the one place where it's great in the summertime, 'cause, you know, it's light until, you know, midnight and then it's light again at 2:00 AM, so if you have insomnia, you can go for a walk almost any time of the day or night and it's not dark. But yeah, that sounds tough. Now, you had also mentioned orthostatic intolerance and cardiac things, but you look super fit. You mentioned that you've taken fitness far for somebody with your issues. Can you tell us more about that?

00:09:51 Rob (Guest): Sure. I want to kind of illustrate the framework for what made me decide to even do this. So, lifting weights kind of really started for me in high school because I didn't want to take P.E. and that was an alternative to get out of P.E. Did not like P.E., not really into sports, either. I thought, “OK, this will get me out of doing that.” And then didn't really pick it back up until I was at university again and started kind of becoming more serious about it, but that's when I started getting really sick. And it was about five or six years ago I attempted to kind of get back into it and had a few false starts. But my main reasoning was since I had orthostatic intolerance, you know they always say, you know, do cardio for POTS, do cardio, do cardio. Cardio is good, but in my opinion it does nothing to strengthen the muscles to aid in the skeletal muscle pump. So that was my thesis, I wanted to actually build muscle, induce hypertrophy, to aid in the skeletal muscle pump, because that's the backup in most people. It’s our primary means of maintaining blood pressure in POTS, so that was kind of my working hypothesis, right? So I thought, “OK, well, the best way to build muscle is, I mean, bodybuilding routines. That's what it does. It induces hypertrophy. It's an endeavor that builds muscle.” So that's kind of how I got into that. And it was really hard when I first started out. I had to take midodrine to raise my blood pressure and a beta blocker to lower my heart rate when I first started getting in there. And that allowed me to actually get in there. And I progressed to the point where I didn't need the beta blocker and eventually didn't need the midodrine. Now I could always slide back into that. It always requires constant effort to upkeep what you've built, and you can always regress, so I wouldn't say I'm permanently off the meds. There may be a point where my health gets worse and I have to go back on it, but currently I'm not on those medications and being in the gym has helped me achieve that.

00:12:00 Jill (Standing Up to POTS): So, did you have to start with, like, non-upright exercises? Or, can I just ask like how, how much fatigue or dysfunction were you dealing with in the beginning? Did you have - like what did you build up from? Where were you when you started?

00:12:18 Rob (Guest): Well, I weighed 146 pounds. (Transcriber’s note: 146 lbs is 66.2 kg). I'm 6’2” (Transcriber’s note: 1.87m) so that gives you an idea of about where I was. And until COVID happened, I was at about 200 (Transcriber’s note: 90.7 kg), so I've gained quite a bit of mass over that time.

00:12:34 Jill (Standing Up to POTS): Wait, so are you saying you had put on like 60 pounds of muscle?

00:12:38 Rob (Guest): Well, some of it was fat, but not much fat, so probably about 40 pounds of muscle, yeah.

00:12:45 Jill (Standing Up to POTS): OK wow. Right on. (laughs)

00:12:38 Rob (Guest): Yeah, over several years. Yeah it was - had to fight for every ounce of it. But I basically started with kind of the compound lifts - the bench, the deadlift, and the squat. And I found that the orthostatic intolerance when you're deadlifting, you're taking big breath in, you're kind of bracing. So, you're kind of, you know, you're holding your breath everything is all tight and I can lift but once I release that tension then that's when the orthostatic intolerance really kind of hits me. I have to go sit down or something like that.

00:13:23 Jill (Standing Up to POTS): Interesting. But you can do a full workout being upright?

00:13:29 Rob (Guest): Well, not every single thing I do is standing. Sometimes I'm sitting on a bench or I'm laying down or something. But yeah, I can do a lot of things standing, standing upright, but it's, you know, certain things are easier to do than others. It kind of depends on the exercise, but generally I'm like leaning on something or I'm sitting in something generally, unless I'm just like doing some type of free weight thing.

00:13:43 Jill (Standing Up to POTS): So, for people listening, there's a type of exercise called isometric. I think of isometric exercises as ones where you're doing a lot of work, but you're not really moving, right? Like a wall sit or a plank or something where you're holding a steady position. And if I'm getting that right and that's ‘Part A’ of the question, but ‘Part B’ is can you do that kind of thing? Or do you find that you need to have your skeletal pump going like your calves pumping in order to exercise? Or can your body handle just holding one position?

00:14:18 Rob (Guest): Well, like when I do curls, I usually do it on a standing preacher bench, so I am - my arms are extended over a bench, but I'm standing and my legs are pretty tight. So usually if I can do something where I keep my legs - tension in my legs - whether it's an upper body exercise or not, that typically helps some with that. And on the subject of isometric exercises, I actually do isometric holds for my quad tendons on the top of my knee. I was having some pain in the quad tendons on the top of my knee, and I do about three sets of 60 second isometric holds before I do any type of lower body just to kind of help reduce any pain or damage to my quad tendon above the kneecap.

00:15:01 Jill (Standing Up to POTS): So that's interesting and I guess it just shows we're all different 'cause I find that I agree with you that lifting weights works way better for me than doing cardio, largely because I am so orthostatically intolerant that when I lift weights, I'm making sure that every other thing I do is in kind of an almost an upside-down position. I do some of these, you know, crazy exercises where I'll just make sure that I'm doing something kind of upside down for a while, 'cause when I spend too much time upright, my blood pools too much, but especially during those isometric exercises. And so I feel like I can't even for 10 seconds hold a wall sit or something 'cause of the blood pooling. Like, my calves really need to keep on pumping, and so I was wondering if that was the case for you, but it sounds like we are two different POTSies. Not the same thing going on.

00:15:56 Rob (Guest): Yeah, I mean I do splits. So I'll do like a pull split and a push split on different days.

00:16:06 Jill (Standing Up to POTS): Do you mind explaining to people what that is, 'cause they're probably thinking about, like the kind of splits that a dancer does. (laughs)

00:16:14 Rob (Guest): Yeah, so you don't want to work the same exact muscle back-to-back days. You want some type of rest time in between. So, one way you can work out one day after the next is do different motions and engage different muscles. So generally, lifts that require pushing and lifts that require pulling usually use different groups of muscles. There's some overlap there, obviously, for stabilizing muscles and things like that. But that's generally what I follow, and recently in the past year or so I've been doing legs on my pull day, so I'll do pull legs and the following day push, and then following day my day off, and then repeat. I don't always get in there that frequently. It kind of depends on how I'm feeling, but that's what I aim for.

00:17:02 Jill (Standing Up to POTS): So do you feel like the weightlifting takes care of your cardio needs? Or do you also work in some cardiovascular exercise also?

00:17:14 Rob (Guest): I feel as if my heart rate sometimes gets up pretty high weightlifting so I almost feel like that, because I have POTS, I can reach my target heart rate a lot easier, so I kind of feel like that is cardio. I don't really have the energy to do much cardio, 'cause I'm usually in the gym for about an hour, two hours. Did you know there's a lot of - you have to rest in between sets, and there's putting weights on the machine and moving around. Also, there's a lot of things you have to - I'm not actually physically lifting a weight that entire time. But generally, I mean, I go in there and I'm pretty beat when I'm done. I don't really have the energy for too much cardio. But I kind of feel like the weightlifting is cardio. Now, I have done a stair machine 'cause it's low impact but it's not something I do regularly.

00:18:01 Jill (Standing Up to POTS): So that's great. So it sounds like you've figured out how to help a lot of your symptoms. Does that make your sleep more refreshing to exercise?

00:18:10 Rob (Guest): Maybe a little. But, I actually had a sleep study done and with, you know, with the EEG and everything, and they said it - and this was ten years ago, mind you - but they said at the time I was having like 45 arousals an hour. That's not waking up, that's just like coming out of deep, so I get very little deep stage sleep. Maybe sometimes, sometimes I'm not sure why, sometimes I'll think you know, I don't remember waking up, I dreamed and all that and still feel completely unrefreshed. So that's the best answer I can give you on that I think.

00:18:40 Jill (Standing Up to POTS): Yeah, so have you found anything else besides exercise that really helps you a lot?

00:18:46 Rob (Guest): I got to the point where I could tolerate some caffeine in the gym without it really - once I kind of got the orthostatic intolerance somewhat addressed, I then started introducing caffeine. So I actually take pre-workout a lot of times when I go in the gym and actually I think that helps maintain the blood pressure too. (Transcriber’s note: pre-workout is a liquid supplement typically taken about 30 minutes before a workout to help increase energy levels. Pre-workouts often contain caffeine, vitamins, and minerals.) And now, if I go for a long time without taking it sometimes, I can tell it speeds up my heart, but generally it doesn't seem to affect my heart too much anymore. It did when I first tried it and messed with it. It sent me maybe pretty tachycardic, but I find pre-workout to be very useful for just having the energy to get in there. That kind of is the catalyst that gets me in there a lot of times. Creatine. Multivitamin. Kind of your basic stuff a lot of people who aren't even sick take. I take magnesium at night and melatonin. That helps a little bit with my sleep, kind of generally helps me fall asleep a little faster. I keep it pretty simple supplement wise 'cause a lot - a lot of stuff doesn’t work.

00:19:53 Jill (Standing Up to POTS): So you had mentioned a few minutes ago that you had an interesting relationship with the medical system and that you had encountered maybe some being dismissed, some gaslighting, and I think that maybe some of us in the POTS community assume that that's something that only happens to, you know, the young women, and kind of the demographic of, “Oh, you're just a drama queen,” but here you are. You said you were, what, like 6’2”, 6’4” or something and it happened to you?

00:20:25 Rob (Guest): 6’2”, yeah. Oh yeah, totally by both female and male doctors as well.

00:20:32 Jill (Standing Up to POTS): So, I don't know how to feel about that. I guess it doesn't make me feel any better. So it's not sexism, it's just potentially something else.

00:20:42 Rob (Guest): I - yeah. I think it's just some really difficult medical cases I think some doctors would rather just not spend the time and mental energy on. It's easier just to be dismissive. That's what I think.

00:20:55 Jill (Standing Up to POTS): So do your friends and family know about your POTS? Is it like a very dominant thing in your life?

00:21:03 Rob (Guest): Yeah, I'm pretty open with describing it. I mean, my friends and family, my small little knit group, know pretty well what I deal with, 'cause I've been dealing with it pretty consistently for over a decade now. So yeah, I think I, I mean some of us will share studies I read and things like that. I feel like I'm rather transparent with it.

00:21:24 Jill (Standing Up to POTS): So what's the best type of help or support that friends or family could give you?

00:21:29 Rob (Guest): Probably their patience. I think I probably require a little more patience than the average person just because I'm dealing with so much. Sometimes it's hard to get things done in a timely manner or the way I want them to. I mean, if I had to give any advice to anyone, any family member that has someone that's dealing with anything like this, I would say: first thing I would do is just try your best to be really patient with them.

00:21:53 Jill (Standing Up to POTS): Is there anything that you know now about living with POTS that you wish you had known sooner?

00:21:59 Rob (Guest): Oh yes, absolutely for sure. I wish I had known everything I know now day one. (laughs) It would have made - you know, it's kind of like a - it was a lot of trial and error, years’ worth, spent reading research articles and, you know, things like that. It's still pretty debilitating, but it's not quite as debilitating as it was, so that would have def-- you know, just everything, I guess.

00:22:23 Jill (Standing Up to POTS): So do you mean when you say lots of trial and error, do you mean that you have kind of like figured out lots of little hacks to use throughout the day and night to make everything a little bit easier?

00:22:33 Rob (Guest): Sure, yeah. For example, I read a study, it was from actually 1986 – the year I was born. It’s kind of interesting. It was talking about IBS and psyllium husk usage. And, you know, it took me years to even come across that study, 'cause I'd heard here and there about psyllium husk and Metamucil and things like that, but I hadn't found a study. (Transcriber’s note: psyllium husk is soluble fiber that is made from the husks of the seeds of the Plantago ovata plant and is often used in fiber supplements like Metamucil.)

00:22:53 Rob (Guest): So sometimes you just kind of have to be lucky and be on the right website at the right time, use the right keywords to find this stuff. But I've been kind of hoarding research studies early on. I remember joining the - it was either the Dysautonomia International Facebook Group or the POTS Facebook group, I don't remember now, but - and I was conversing with someone and they asked me - I think I sent them a study or posted a study and someone asked me, “So how many of these do you have at the time?” I think I had about 55 or 60 and they’re like, you know, “Send it over 'cause we're trying to make a repository on the Dysautonomia International website of all these studies,” so I think a lot of the stuff I had hoarded contributed to starting to build that database that's currently on that site now.

00:23:37 Jill (Standing Up to POTS): So it sounds like you have really just, for the most part, figured things out for yourself, tried things yourself, that you've been quite independent in, you know, your sounds like maybe a team of one who has taken this on largely.

00:23:56 Rob (Guest): Yeah, yeah, well, I mean I converse with people online, but generally it's, you know, I'm the one who has the executive decision on whether or not to pursue something. So in that respect, yeah, pretty much everything I do is either something I read or something I tried and it kind of worked, because generally, you know, when you go to a doctor, generally patients - POTS patients - know more than the physician because with POTS the patient has time on their hands to just delve really deep into one area. These cardiologists, you know, their scope is broader than that. They don’t have the time or the willingness to learn, or access to it, or motivation to do it.

00:24:39 Jill (Standing Up to POTS): Has anything positive at all come from having POTS? Are there any silver linings at all?

00:24:45 Rob (Guest): It’s mostly negative, if I’m being brutally honest. I’m not one of these people who is like, “Yeah, it was totally worth it.” It's not worth it. I'd rather, you know, not have had to deal with any of this. I think I, I think I've become, and I don't know if this is just general aging, but I feel like I've become more patient because it forces you to kind of want to be patient with yourself, and I find that that has carried over to other people or can have carry over to other people. So I feel like I'm a little - just a little more patient with life than I used to be. And maybe have a little more unmerited favor for people, I think.

00:25:24 Jill (Standing Up to POTS): Unmerited favor. What do you mean?

00:25:22 Rob (Guest): Just some people would probably describe it as “grace,” “unmerited favor,” just kind of not getting as angry with people or kind of cutting a little more slack here or there. That kind of a thing. For an undeserved, you know they may be being mean to you, but you still try and be nice to them. That kind of a thing.

00:25:46 Jill (Standing Up to POTS): Do you get a lot of the, “But you don't look sick” type of comments?

00:25:46 Rob (Guest): Yeah, for sure that's kind of the Catch-22 about exercising with this in that the fitter I look, the harder it is to believe how sick I am. It's a bit of a paradox there.

00:26:04 Jill (Standing Up to POTS): We have what we like to call the speed round and it's just meant to be a little bit fun and the idea is you just say the first answer that comes to your head. So what is the drink you find the most hydrating?

00:26:19 Rob (Guest): Liquid IV.

00:26:21 Jill (Standing Up to POTS): What's your favorite time of day and why?

00:26:24 Rob (Guest): Night time because my brain works better and I feel better generally.

00:26:28 Jill (Standing Up to POTS): How many doctors have you seen for POTS?

00:26:31 Rob (Guest): Somewhere between 10 to 15.

00:26:34 Jill (Standing Up to POTS): How many other POTS patients have you ever met face to face?

00:26:38 Rob (Guest): Three.

00:26:39 Jill (Standing Up to POTS): What is one word that describes what it's like living with chronic illness?

00:26:45 Rob (Guest): Brutal.

00:26:46 Jill (Standing Up to POTS): What's the best advice anyone ever gave you?

00:26:49 Rob (Guest): The best advice anyone ever gave me: Don't spend too much time worrying what other people think of you because it'll drive you crazy.

00:26:57 Jill (Standing Up to POTS): What is something small that brings you comfort or joy?

00:27:01 Rob (Guest): My phone 'cause it access to knowledge connections with people, it's everything.

00:27:06 Jill (Standing Up to POTS): Who is someone that you admire?

00:27:08 Rob (Guest): I’d say my dad.

00:27:10 Jill (Standing Up to POTS): What is something that you're proud of?

00:27:14 Rob (Guest): I am proud of the fact I am still alive because I've had to fight for it.

00:27:18 Jill (Standing Up to POTS): In regards to the POTS?

00:27:20 Rob (Guest): Yeah, in regards to the actual illness itself, the psychological implications of the illness, all of that all rolled into one.

00:27:27 Jill (Standing Up to POTS): Yeah, do you feel like that part has gotten easier over time?

00:27:33 Rob (Guest): Dealing with it psychologically? Yes and no. I think I have more tools to deal with it. But sometimes as it goes on longer and longer and longer, like the weight of that becomes more because it's taken up a larger - it's continually taking up a larger and larger chunk of my overall life - lifespan, I guess you could say.

00:27:57 Jill (Standing Up to POTS): Yeah, so I guess are you are you kind of getting at - I think a way that many of us have felt at times with chronic illness - that sometimes it's just, it's hard. But when you say that you are, you're proud that you're here, do you mean that you had at times thought maybe it was not worth it to be here?

00:28:20 Rob (Guest): Oh for sure, yeah, totally.

00:28:22 Jill (Standing Up to POTS): Can I ask - and tell me if it's too personal - can I ask what helps you decide that it is worth it to be here?

00:28:28 Rob (Guest): Really, there's something you can look forward to. And I mean anything. Like, I look forward to going to the gym. I look forward to seeing friends. I look forward to listening to music, that kind of a thing, and I found the gym has not only also been great for my physical health, I think it helps me emotionally psychologically as well too.

00:28:50 Jill (Standing Up to POTS): Wow, I think you nailed something that I had hit on at times when I was struggling with that, which, yeah, it's so important to have things you're looking forward to, and sometimes when chronic illness takes away from you all of the things or a lot of the things that you previously had looked forward to, it's a really dark place and so I've realized that I now make a very conscious effort to always have little things to be looking forward to. And when other people tell me they're struggling, that's always my first question, you know, is, “OK. Tell me, you know, good things to look forward to,” and I think that's a big deal. And I think some of the groups out there - and I have to call out the Dysautonomia Support Network because I think they've done a really good job of creating activities and groups and clubs that I have looked forward to at times when I couldn't do much, couldn't get outside - they have created events and things that have served that purpose for me. And so I guess I'm always just kind of curious how other people who have big limitations, you know, “So what do you look forward to?” So tell me. So, like right now, what do you look forward to?

00:30:08 Rob (Guest): I'm looking forward to getting some sleep, eating some food, right in the immediate future. I'm actually pretty hungry. Hopefully get in the gym tomorrow, doing some housework so my house looks a little better. I kind of stuff mean if you're seeing my friends.

00:30:21 Jill (Standing Up to POTS): Yeah, even just starting a good binge worthy show on Netflix or something can sometimes like take a few weeks, right?

00:30:30 Rob (Guest): Yeah. I mean, I found music will sometimes get me into a better mood or get me into a worse mood, depending what I listen to, 'cause I feel like music either mirrors what you feel already and amplifies it, or you listen to music to try and change your mood into something that you're - into a mood that you're currently not in.

00:30:47 Jill (Standing Up to POTS): Can I ask another question about the gyms - as we go back to the gym I'm thinking of more questions. Do you feel like, like a lot of people when they workout, they get kind of that workout high? Or the endorphins going? Do you feel like you get that out of working out?

00:31:04 Rob (Guest): No, I don't feel like I get that from working. Generally you get kind of your muscles will get bigger, 'cause blood's flowing to muscle so you get kind of a pump and that feels good, but I wouldn't say, and I've actually thought about that before, as I don't really get an exercise high I feel.

00:31:19 Jill (Standing Up to POTS): Do you feel that you have the fatigue that 98% of most POTS patients have?

00:31:27 Rob (Guest): That is hard to gauge. My gut reaction to that would be I feel like mine's more severe. Because I think - so a lot of people have way more cardiac issues than I have, and I have those, but it's not severe. I feel like for a POTS patient my fatigue is more severe than average, if I had to gauge. But that's not to demean or say, “oh, I'm so much worse than everybody else,” but if I had to, if I was forced to rate that, that's what I would say.

00:31:54 Jill (Standing Up to POTS): So I know you mentioned caffeine - I'm kind of flashing back to times when my fatigue was pretty bad and I remember getting to the gym and then just, like, lying spread eagle on a mat for an hour and never actually getting up the energy to do anything. Or times that I would drive to a swimming pool but never actually get out of the car, and I'd sit there thinking, “OK, get up, go! OK, now go! OK, you can sit here for one more minute and then you gotta go!” And I was wondering, do you struggle to get yourself started and going or do you have any tricks? Or how do you - how do you get yourself doing a good workout most days?

00:32:33 Rob (Guest): Oh yeah, sure. I struggle with it constantly. When I take caffeine, you know, you'll see these ads for pre-workout people talk about they feel all jacked up, you know they're ready to just explode. That's not how I feel when I take it. I feel a little more awake, a little less fatigue. I don't necessarily feel wired. Now, sometimes I've taken it and had a feeling similar to what you had where I'm still exhausted, but I'm wired at the same time. That's typically - that's not typical. Generally, I just feel a little less fatigue. My body feels less fatigued. My brain feels a little less fatigued, but it doesn't launch me into some superhuman level of energy or anything close to that. What was the other part of the question, I’m sorry?

00:33:14 Jill (Standing Up to POTS): Well, if you have any like routine to get yourself going. Like, do you do a special warm up or do you like - I used to notice there was a guy at my gym who would sit there for a few minutes and he'd like to talk to himself, getting himself psyched up to do a weight workout. And, I don't know - do you have any like ideas for people who are trying to, like, get themselves energized to get their exercise?

00:33:37 Rob (Guest): Well, what I'll do, it starts when I first wake up. I generally try to drink some type of electrolyte drink when I first wake up. So my first order of the day is trying to get as hydrated as possible. And some days I'm better at that than others. Sometimes you don't feel like tossing back 32 ounces of water, you know? Or with electrolyte powder or whatever, but generally that's what I'm trying to do. So I try to make sure I'm really well hydrated. That's a big thing before I go in there. Then usually something like IBS hits me and I have to deal with that for a while. And then, well, I eat before that, and I just sit and then generally after I get done with that, I will maybe drink a little bit more electrolyte mix and then I drink the pre-workout. So that's even more liquid inside me. And take creatine. And that kind of whole - aids in a little water retention. I think that might help a little bit. And then I get in there and I usually listen to music on headphones. That helps a little bit. And usually when I get in there, I don't start out with the heaviest weight, like I usually -- like on pull day, for instance, I'll start with a close grip pull down and I'll just put a little bit of weight on there, and I almost kind of use it to stretch. I use the machine itself to, like, force stretch me out. It feels pretty good. And then I just kind of will do a couple sets, increasing the weight every time. So I don't really - the only time I really do a lot of stretching is before legs I really try and stretch 'cause you know all the sitting and laying down we do in modern life makes the hips really tight, so I try to loosen the hips, do my isometric holds for my knees, that kind of thing. That's when I really do a lot of stretching before I do any type of lower body.

00:35:15 Jill (Standing Up to POTS): OK. So, you're putting in the work, and it sounds like it's paying off. Is that what I'm hearing?

00:35:23 Rob (Guest): Yeah, it's paying off. It's interesting because I kind of - I feel like I have one foot and each foot is in a different world. It's like I'm in the world of the healthy, and I'm also in the world of the very sick, simultaneously. I feel like the people that don't have to deal with this think you're either - it's dualistic thinking you're either in this group or you’re either healthy or you're sick, and you can be both pretty heavily. Yeah, it's definitely paid off, and I'm also still very sick.

00:35:56 Jill (Standing Up to POTS): That's a really interesting, good way to put it, but I suppose it beats the alternative of being sick and also unfit.

00:36:08 Rob (Guest): Sure, absolutely. I would be much worse off if I hadn't done what I did and do what I currently do now for sure.

00:36:15 Jill (Standing Up to POTS): Yeah, well, that's neat. So what do you wish more people knew about POTS?

00:36:21 Rob (Guest): I wish more people knew how systemic the disease is, meaning it's not just it's not just a heart rate problem. It's not just a blood pressure problem, it affects every organ system of the body to varying degrees in different people. So, I wish people knew how more of an entire body impact it can have. I feel like that's not known in the popular culture and it's also not very well known in the medical community itself.

00:36:53 Jill (Standing Up to POTS): And it doesn't help that POTS is named for just one symptom, and like not even in a very bothersome symptom, in my opinion. It's sort of like funny to name something for its least bothersome symptom and makes everybody think like, “What's the matter? So your heart is fast and you get to eat a lot of salt?” It sounds great, you know. (laughs)

00:37:13 Rob (Guest): Yeah, as I understand it, because it's a syndrome they have to name it after a symptom because the root cause is unknown. So they by default call it by the symptom they can measure.

00:37:23 Jill (Standing Up to POTS): They can measure.

00:37:24 Rob (Guest): That's how I understand, yeah.

00:37:26 Jill (Standing Up to POTS): So if they figure it out and if they figure out the cause, then they can upgrade the name maybe?

00:37:31 Rob (Guest): That's my understanding.

00:37:33 Jill (Standing Up to POTS): So, I just have one last question which is: is there anything you would like to say to any of your fellow POTS patients out there who may be listening and/or why did you agree to let us share your story today?

00:37:50 Rob (Guest): I think most people just kind of want to have someone tell their story too, and I'm no different. So that's that was my main motivation for getting on here. And, I don't know, I don't know really what to say to the POTS community other than like, yeah, it's hell. I guess, just validate them. That's what I would say.

00:38:12 Jill (Standing Up to POTS): Yeah, I think that's a lot, actually. That's a whole lot. So thank you so much for sharing your story and your insights with so much openness. We really appreciate it. I know there are patients out there getting a lot out of this just from the few episodes that have aired so far and we've had requests to hear from male voices and so thank you for stepping up and volunteering.

00:38:44 Rob (Guest): Yeah, absolutely. It was great. Thank you for having me.

00:38:47 Jill (Standing Up to POTS): And I wish we worked out at the same gym. Then, you know, learn something. But, hey listeners, remember this is not medical advice. Consult your health care team about what's right for you 'cause we're all so different. But thank you for tuning in. Remember, you're not alone, and please join us again soon.

00:39:08 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. © 2021 Standing Up to POTS, Inc. All rights reserved. Transcriber’s note: you can request a copy of this transcript or the transcript for any other episode by emailing volunteer@standinguptopots.org.