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Jill Brook: Hello, fellow POTS patients, and amazing people who care about POTS patients. I'm Jill Brook, your hyper adrenergic host, and today we have an episode of the POTS Diaries with mackenzie. Mackenzie, thank you so much for joining us today.

Mackenzie: Thank you so much for having me.

Jill Brook: So tell us a little bit about yourself. What should we know about you for the basics?

Mackenzie: I live in Massachusetts. I have a sister and a brother, and I live with my mom. We have three cats. I do, for my hobbies, I do photography, painting. I'm writing a book, a children's book, but that's pretty much it.

Jill Brook: Wow. What are you writing A children's book about?

Mackenzie: So it's called Lucky and Bucky Save the Day. It's about these two bugs that go around helping other bugs around the neighborhood.

Jill Brook: Oh my gosh. That sounds amazing. That's so cool. And, and you said you also do painting and photography. Are you gonna like, illustrate your own children's [00:01:00] book?

Mackenzie: I am.

Jill Brook: Oh my gosh. So you're drawing a lot of bugs.

Mackenzie: Yes.

Jill Brook: That sounds so cool. All right. And so, like tell us about your personality traits. How would your family or friends describe you?

Mackenzie: My family calls me stubborn. That's like their biggest I've been told I'm very nurturing. That's pretty much it.

Jill Brook: Okay. And if we were to make you brag about yourself, what are you good at besides writing and photography and art.

Mackenzie: Well, I guess I would still go with the art 'cause I do like to draw. I mean, I'm not very good at drawing, but I do like to do it.

Jill Brook: Hmm. Very cool. All right. And how old are you?

Mackenzie: I'm 19.

Jill Brook: Okay, cool. And do you wanna tell us anything about like where you live in Massachusetts? I have not been to Massachusetts that much, but I think of it as like just a [00:02:00] bunch of like nice little towns. Do you live in like one of those nice little towns?

Mackenzie: I wish. No, it's just a small little town. There's not much here. It's just like a normal little town.

Jill Brook: I guess if we're gonna get into your POTS journey, we need to know, did you have a life before POTS entered or have you had it all your life?

Mackenzie: Before I had POTS, I had the normal, typical teenage life. I would hang out with friends all that stuff. So I guess it was just kind of normal.

Jill Brook: So, so at what age did POTS enter your life and what did that year look like? Like what were you doing? What were you up to in that year before POTS came up?

Mackenzie: So I got POTS three years ago. I had COVID, which brought on my POTS. I was 16. That, that whole year was just kind of messy. I was constantly dizzy. It [00:03:00] was, it was rough.

Jill Brook: Was that your first sign, like you had COVID and then it kind of never went away or, so what did it look like when your POTS came on?

Mackenzie: I remember the day that my first symptoms came up. I was standing in a line and all of a sudden I just got dizzy. I didn't know. I ended up going to the doctors and getting blood work and they said everything was fine. They said it could have been anxiety, which we all know is part of POTS, but it was definitely more than that.

I knew something was wrong, like this wasn't normal.

Jill Brook: So that was your initiation ritual to go in and get told that everything's fine. And so what did you think at the time?

Mackenzie: Well, I wasn't really sure 'cause I never, I was always a healthy kid. My mom says I was always her healthiest kid. And then all of a sudden it, this, these things just happened. I'd get dizzy. My heart rate would go up and we weren't sure what was happening.

Jill Brook: So how long did that last?

Mackenzie: I think at that point I was in a year [00:04:00] long flare up.

Jill Brook: Wow. Okay. So you went a whole year without realizing it was POTS, or how did you get a diagnosis?

Mackenzie: So my mom was on TikTok one night and she saw this lady. She was talking about these symptoms she had, and she was like, these are the exact symptoms you have. So we started doing a little more research and it started coming up more and my mom's like, I think you have POTS. So for about two years we kind of were treating it on our own

'cause the doctors weren't doing anything. They said it was anxiety and pre-diabetes and PCOS, all these things. But it ended up being POTS.

Jill Brook: Oh my goodness. So TikTok, now I'm a little bit curious, like, so did your mom figure it out or did the TikTok algorithm figure it out?

Mackenzie: I don't really know. She just ended up sending me the video that night

and that just started the whole diagnosis.

Jill Brook: Because that would be so interesting, like you could kind of imagine a person who's watching more and more videos about syncope or [00:05:00] presyncope or dizziness or fatigue. And, and I almost wonder if like one of the social media algorithms could, could sort of figure it out before a person didn't start sending them POTS videos.

That's probably happened.

Okay, so how'd that go, treating it yourself for those two years?

Mackenzie: We started out with drinking Liquid IVs, which I didn't like. Then we, we just kind of went with the flow. I would take salt pills, all these things, and it did eventually help, until August of 2024. That was when my second biggest flare up happened. I ended up going to the ER in October of 2024 for a migraine, and they did try to do testing on me, but nothing came up as POTS.

So I ended up going home that day with no answers. November of 2024, I ended up going back to the ER and I did all these testings, I did [00:06:00] a CAT scan. And that's when they finally diagnosed me with POTS.

Jill Brook: Wow. Okay. And so how did you feel at that point? Were you

happy to have answers or...?

Mackenzie: Yes and no. I mean, there's still a lot more we need to find out. But we did get majority of the answers.

Jill Brook: Okay, so were they able to do very much more for you then on top of like the salt and the fluids that you were already doing?

Mackenzie: They did put me on metoprolol. So that does help. But they did tell me to increase my salt,

but other than that, I've just been doing what I've been doing.

Jill Brook: Okay. And so how functional are you now? How, how are you doing?

Mackenzie: For the most part, I'm doing pretty well. I still do have my flareups, but other than that, pretty good.

Jill Brook: Oh, good. So it has not held you back too much from doing what you like to do.

Mackenzie: Yeah, I [00:07:00] can still do everything I wanna do.

Jill Brook: So when you do have a flare up, what does that look like?

Mackenzie: When I have a flareup, it's mostly just laying in my bed taking a lot of salt, drinking, putting my feet up.

Jill Brook: And does it seem like it's getting better over time, like the longer you get from your COVID infection, or does it seem like it's pretty stable?

Mackenzie: I think it's pretty stable at this point. I mean, like I said, I still do have my flareups, but they're not as bad as they used to be.

Jill Brook: Did you have a bad case of COVID before this set on?

Mackenzie: I would say it was pretty mild.

Jill Brook: So the COVID was the no big deal. It's just that you kind of were left with this.

Mackenzie: Yeah.

Jill Brook: Okay, so how has your life changed at all, if at all, now that you have POTS? Do you think, I don't know, has it changed your art? Has it changed the way you think about the medical system? Has it changed anything [00:08:00] else?

Mackenzie: It kind of changed my look on life. When I did have my flare up, I ended up, I ended up having to have a walker 'cause I couldn't walk on my own. I couldn't go to the bathroom on my own so that it kind of was eye-opening for me. So that was scary knowing that the fact that I wasn't able to walk on my own.

Jill Brook: Does that happen every time you have a flare or just, just one time when you had a flare?

Mackenzie: So that happened that one time. Usually my, my normal flares, I'm okay. But that was the biggest one.

Jill Brook: Okay. Okay. So that one made you say, oh boy, this is a different life that I'm used to.

Mackenzie: Yeah.

Jill Brook: Okay, but, but your flares now are not quite as bad?

Mackenzie: They're a little more manageable. It just with some salt and some water and laying down, I think I can pretty much handle a flare now [00:09:00] on top of my medication.

Jill Brook: Yeah. Yeah. And but, so talk more about how it makes you look differently at life.

Mackenzie: Well, when I started out getting POTS, I felt like my life was kind of just over, like this is gonna be the rest of my life. Like, I won't be able to do things, I won't be able to have a job. I ended up crying some nights 'cause I was like, I can't be a teacher. How am I supposed to stand up and teach all these kids?

But with all the resources I have, I think I'm gonna do a pretty good job at that. I mean I know it's gonna be difficult just 'cause it's POTS, but I think overall I think I'm going to do pretty good.

Jill Brook: Okay, so talk more about that. So it's your dream to be a teacher.

Mackenzie: Yes. I, I'm in college right now. I'm, I'm gonna be a junior and I want to become an education teacher, an elementary education teacher.

Jill Brook: Okay. Okay. And so when you think about that, how are you gonna make it work with POTS?

Mackenzie: I already know there's gonna [00:10:00] be a lot of sitting 'cause I know standing is, is terrible. And I know I'm gonna have to take a lot of salt too.

Jill Brook: Do you think that is the kind of thing where, where you'll just like be open about it and have your, I don't know, your salt and your fluids sitting on your desk and your kids will just know, like, just, okay, teacher just does a lot of salt and fluids.

Mackenzie: Yeah.

Jill Brook: Okay, so have you met any other people with POTS yet?

Mackenzie: I have not.

Jill Brook: Okay. And how many doctors did it take you to find the accurate diagnosis?

Mackenzie: A lot. My cardiologist actually said that I was the worst case he has ever seen.

Jill Brook: Of POTS?

Mackenzie: Mm-hmm.

Jill Brook: As in the severity of your POTS, like all the other doctors missed a really, really severe case of POTS.

Mackenzie: Yes.

Jill Brook: Wow. Yeah. So tell us more about those ER visits. Like what, [00:11:00] what was that like to be feeling so terrible and being told it was just anxiety or they couldn't find anything wrong with you?

Mackenzie: I felt very defeated. Like I knew something was physically wrong, but I, I couldn't really explain it to them. It's kind of a hard explanation, like if you don't have POTS, you kind of just don't know what it feels like. So I was trying to explain to these doctors what it was like, and they're like, you sound like you have anxiety.

You sound dehydrated. They would give me IVs and all these things, but they wouldn't help. And I'm like, it's more than that.

Jill Brook: Yeah. You know, that's a really good point, and I think that especially when you don't know you have POTS, like I know for myself, before I joined the community, before I knew what I had, I didn't really have a vocabulary to talk about a lot of the symptoms. Like when I finally learned the term for air hunger, I was like, oh yeah, that's a perfect word for what that is,

but I never knew how to explain that before. And like the brain zaps and like the inner [00:12:00] vibrations, like there's so many things that are so hard to communicate if you've never heard them talked about before and and especially when somebody thinks it's all just more evidence that you're anxious.

Mackenzie: Yeah.

Jill Brook: I mean, was that hard for you? Like, I know when I went through that it got my self-esteem, like really low. I had such low self-confidence after doing that so many times, like I was a different person. Like I didn't even feel like I had the self-confidence to like pick a color to paint my bedroom.

Like it had just done such a job on me. Like how did it affect you to have that keep happening and how did you kind of cope? Did you just kinda keep, keep going.

Mackenzie: Yeah.

Jill Brook: That's fantastic. That's great. Did anybody help you?

Mackenzie: My mom. She was my biggest advocate. My biggest fighter. She was the only one who believed that I was [00:13:00] sick. I was told that it was a mind over matter thing and she was the only one fighting.

Jill Brook: Wow. What do you think made her believe it when nobody else did?

Mackenzie: Well, she's my mom, so she knows. So she knows that I wasn't feeling good all the time. She knows when I don't feel good. She's still my biggest advocate. Yeah.

Jill Brook: So, okay. I have a question about art and writing. When you sort of have these different frames of mind, right, like I'm guessing that you sort of have the way your brain acts and feels when you're feeling normal, and then you have a, almost like a different way that your brain works when it's in a flare.

Does that come out in your writing or your painting or your drawing at all? Or do you tend to say and paint the same way in both frames of mind.

Mackenzie: I think I, I paint and write the, the same.

Jill Brook: Is there anything about POTS that you know [00:14:00] now that you wish you had known sooner?

Mackenzie: I'm not sure. I wish I could explain it to people better. I know I do a better job explaining now, but I wish back then when I first had it, I could have explained it better.

Jill Brook: Yeah. Yeah. Do you feel like POTS has taught you any life lessons?

Mackenzie: Yes, do not take your health for granted.

Jill Brook: Yeah. Has there been anything positive that has come from having POTS, like any silver linings?

Mackenzie: Yes. I actually have a amazing work from home job because of POTS, so I think that's a plus.

Jill Brook: Do you wanna talk about that? Because I know a lot of people's, like, if they're listening, their ears just perked up. They're like, ooh, tell us about that. 'cause we are thinking we want the same thing. What is a, what does a perfect work from home job look like for you?

Mackenzie: So, I work for this company. They [00:15:00] sponsor children to go to college eventually. And basically I can, I can just do emails from home. I think it's easier for me mentally and physically. So I am very grateful to have a work from home job.

Jill Brook: That's fantastic. And when you applied for this job, was it a work from home job or did you have to like get them to allow you to work from home?

Mackenzie: It was already a work from home.

Jill Brook: So can you do it but it's like from anywhere?

Mackenzie: Yes.

Jill Brook: Do they care if you're sitting up or lying in your bed or anything?

Mackenzie: No.

Jill Brook: Excellent. Wonderful. Okay. So you recommend that to other people with POTS.

Mackenzie: Yes.

Jill Brook: So, if we were to ask you to imagine your past self at your worst in terms of your POTS. And I always say that because I know from a lot of [00:16:00] listeners that they tend to listen to this when they're feeling at their worst. What would that version of you want to hear from this version of you now?

Like, can, can, right now, Mackenzie, talk to low point Mackenzie. And what would, what would you say?

Mackenzie: I would definitely tell myself that it does get better. You're not gonna be stuck in this flare forever. It will eventually get better. That's probably the biggest thing I would tell myself.

Jill Brook: How long do your flares tend to last?

Mackenzie: It kind of depends. It goes from a couple months to a year.

Jill Brook: Oh, that's long. That's longer than I was expecting. You've had a year long flare.

Mackenzie: Mm-hmm.

Jill Brook: Have you had that since you knew you had POTS and were doing all the things you're doing now for it?

Mackenzie: My first year long one was three years ago, and my second one was last year.

Jill Brook: [00:17:00] Okay, and you're out of it now.

Mackenzie: Sort of.

Jill Brook: Okay. So I'm gonna be honest, that sounds scary. A year long flare.

Mackenzie: Yeah, they're pretty, yeah.

Jill Brook: When you go into a flare that bad, was there like a trigger that you know of or do you just never know? What, what made it happen?

Mackenzie: I feel like one of my biggest triggers are heat, so summertime tends to be my worst flareups.

Jill Brook: Do you use anything like I don't know, ice bracelets or or the cooling vests or anything like that?

Mackenzie: I actually have a box of disposable ice packs that I use.

Jill Brook: Oh, smart. Okay. Yeah. You know, it's funny 'cause I, I too did really poorly with heat, I mean like so poorly that we ended up moving to Alaska. But I feel like I tried almost every single ice vest out there, every cooling [00:18:00] vest, except the ones that actively circulate ice water and have to be connected to a cooler 'cause I didn't wanna be connected to a cooler. But I, I honestly found like none of them worked as well as just a cold, wet

towel around my neck. And granted it would have to be like dripping so that I'd actually stay wet. And maybe that's 'cause I live in a really dry climate, maybe in a humid climate that wouldn't work that well. But I was very disappointed with the performance of cooling vests, I have to say. And so yeah, that's like a whole art to keeping yourself cool,

huh?

Mackenzie: Yeah, I always joke about living in Alaska with my mom.

Jill Brook: Oh yeah. Well, you know what I learned is that Alaska nailed it for the temperature, and for me, my magic temperature was 58 degrees. And if I was 58 degrees, granted I was basically shivering, but I felt quite a bit better. [00:19:00] My poor dogs were shivering. But the thing about Alaska was the lack of sunlight made me noticeably more inflamed.

And even when I would take vitamin D supplements, I learned, I mean, I lived there for seven years, but then I did end up going back to California because the sunlight made my inflammation so much better and some of my weird symptoms like in Alaska, my hands would puff up and burn and turn red at night.

Like every night, no matter what I did. And I think something about sunlight is what fixed that. Because when I was in California, that didn't happen. So anyway, I don't, I know everybody's mileage will vary, but I learned that temperature is not the only factor. So if you do something really dramatic to change your life all for temperature, you will maybe learn other factors that you should have thought of too. Okay, so tell us more [00:20:00] about what you're up to these days. So you're in college and do you go to a campus, like do you go in person or do you do from home, and how does all that work for your POTS?

Mackenzie: I do online college, thankfully. And it helps my, my anxiety a lot since I don't have to go on Zooms. It's kind of a at your own pace college. It helps physically 'cause I can do my schoolwork in bed.

Jill Brook: And when you become a teacher, do you plan to become the type of teacher that teaches online or to be like, be present physically in a classroom with students?

Mackenzie: I've actually thought of both. I'm kind of trying to aim more towards online, but I am willing to go into a classroom and teach in person.

Jill Brook: Okay. Okay. And so can I ask like, so how do you keep a social life if you like I know that college is like normally a time of like meeting a lot of people. Can [00:21:00] you still make a lot of friends in college when it's all online?

Mackenzie: Well, I go to a college where it's mostly older women, so I don't really have friends from there, but I do have friends online.

Jill Brook: Okay, so you just have different

friends.

Mackenzie: Yeah.

Jill Brook: Okay. That probably makes you better at college, 'cause I will say I definitely, probably would've studied harder and better if I hadn't been distracted by socializing. Okay, and I guess, did you start doing this during like COVID lockdown, like when everybody was doing this?

Mackenzie: So when COVID came down, I was still in high school. But when we were all on our lockdown, we did have remote schooling. My mom did end up having us go to an online school, which ended up making me wanna go to an online college.

Jill Brook: Okay. Yeah. Yeah, that's what I was wondering. So you kind of, you got a taste of it and you liked it and it works for you.

Mackenzie: Yeah.

Jill Brook: That's fantastic. That's great. Okay. Are [00:22:00] you up for doing a speed round where you just say the first thing that comes to your mind?

Mackenzie: Absolutely.

Jill Brook: Cool. What's your favorite way to get salt?

Mackenzie: Salt pills.

Jill Brook: What's the drink you find the most hydrating?

Mackenzie: Liquid IV.

Jill Brook: What is your favorite time of the day and why?

Mackenzie: Nighttime because it's peaceful.

Jill Brook: Where is your favorite place to spend time?

Mackenzie: At home.

Jill Brook: What is one word that describes what it's like living with a chronic illness?

Mackenzie: Frustrating.

Jill Brook: What is something small that brings you comfort or joy?

Mackenzie: My cats.

Jill Brook: What is some good advice that you try to live by?

Mackenzie: Live life to the fullest.

Jill Brook: Who is someone you admire?

Mackenzie: My mom.

Jill Brook: Do you wanna say why?

Mackenzie: Because she's my biggest advocate.

Jill Brook: Yay mom. [00:23:00] What is something that you're proud of?

Mackenzie: My siblings.

Jill Brook: Do you wanna say why?

Mackenzie: I, I'm just proud to be their big sibling.

Jill Brook: What's an activity that you can enjoy even when you're feeling POTSy?

Mackenzie: Watching movies.

Jill Brook: What is your pet peeve?

Mackenzie: Loud chewing,

Jill Brook: What helps you fall asleep, if anything?

Mackenzie: Relaxing music.

Jill Brook: What gives you energy when you need it, if anything?

Mackenzie: Caffeine.

Jill Brook: What is a gift that you would give to every POTS patient on earth if you had infinite funds?

Mackenzie: Compression socks.

Jill Brook: What is something that you're grateful for?

Mackenzie: My family.

Jill Brook: Okay, finish this sentence. I love it when...

Mackenzie: I could stay home.

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?

Mackenzie: Probably at the ground in Target.

Jill Brook: [00:24:00] Ah, an old favorite. I've heard that one before.

Okay. I just have a couple last questions. What do you wish more people knew about POTS?

Mackenzie: That it's, it's more than just a mind over matter thing. Like it's a very serious thing.

Jill Brook: Yeah, good one. And is there anything you wanna say to your fellow patients who might be listening?

Mackenzie: It does get better.

Jill Brook: That is such a great way to end. Mackenzie, thank you for sharing your story and everything with us. We so appreciate it and I know that everybody listening is wishing you all the best going forward, and maybe some people will end up in one of your classes one of these days, who knows? So it's been really lovely talking to you.

Thank you.

Mackenzie: Thank you.

Jill Brook: Okay, listeners, that's all for today. 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.