Episode 41 – POTS Diaries with Garrett

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.

00:30 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. Today we are speaking with Garrett, who kindly volunteered to share his experiences so that we can all benefit. Garrett, thank you so much for being here with us today.

00:53 Garrett (Guest): Thank you for having me.

00:55 Jill (Host): So, for starters, how old are you?

00:58 Garrett (Guest): I am currently 18.

01:00 Jill (Host): And where do you live and where did you grow up?

01:02 Garrett (Guest): I originally grew up in Arizona and then moved to outside Chicago freshman year of high school and then now I live in Stillwater, Minnesota.

01:13 Jill (Host): OK. Other people are listening, cannot see you, but I can see that it looks like in your background you have a lot of sports going on. Are you a sports person?

01:22 Garrett (Guest): Yes, my main sport is hockey.

01:24 Jill (Host): Ah, OK. And what else do you enjoy? Or what else have you done a lot of in your life?

01:32 Garrett (Guest): Hockey is pretty much the main big one, I would say. I like to play football and lacrosse and I started getting into guitar a little bit since I haven't been able to play hockey. So I've tried to find other things to, you know, do.

01:47 Jill (Host): So, what did you like so much about hockey?

01:51 Garrett (Guest): I kind of just grew up around it my whole life and found a passion and I enjoyed it, so I kept practicing and I was able to play for some good teams and hopefully I can continue to play after my POTS recovery.

02:06 Jill (Host): OK, and what about other things about you, like how would your friends or family describe your personality?

02:14 Garrett (Guest): Before I got POTS, I would say I was pretty energetic and funny. Just a good person to be around. I'm kind of just always positive most of the time. I'm never really negative or down. My friends are big part of my life.

02:30 Jill (Host): Can you give us a snapshot of what your life looked like for like the year or so, up until POTS entered your life?

02:39 Garrett (Guest): Yes, I was getting ready to play my high school season and practicing all the time, getting ready for the big season. Just training a lot and living a teenage life. And then I got COVID in November and that kind of started everything. I was sick for about 3 days - just flu like symptoms, but like 10 times worse. And by the 4th day I woke up feeling better and at night I was having trouble breathing so I had to go to the ER. And ever since then, I've had heart problems like tachycardia and palpitations and trouble breathing. I always feel like I'm being sat on. It's kind of why it's hard to talk sometimes.

03:27 Jill (Host): Wow, so that sounds really scary. So, you went to the ER for COVID, and did you come out of the COVID OK? Did you spend very much time at the hospital?

03:40 Garrett (Guest): No, I just stayed one late night. I was sick for about three days - just very out of it. And by the 4th day, I just felt like I was being sat on and that caused some problems, and my heart’s never felt the same, and tachycardia and palpitations happen all the time. And for the last 11 months, that's what's been going on.

04:05 Jill (Host): Wow, so at first did you assume it was just part of the COVID recovery and it would just go away?

04:11 Garrett (Guest): Yes, when I was sick, I didn't really think much of it. I kind of just assumed I was going to be back and better in a couple days, but that wasn't the case.

04:22 Jill (Host): So, at what point did you start seeking answers saying, OK, I don't think this is COVID anymore. I think this is something else? Like, how did you figure out that it was POTS?

04:32 Garrett (Guest): I've seen about 50 doctors through Clinic and everywhere else to find answers and most of them don't know anything about it. Just helping me, they couldn’t really do much. And about like a month later, I kind of realized that there's more to it than just COVID.

04:51 Jill (Host): So, can you tell us more about your symptoms now? You mentioned it feels like someone sitting on your chest. Do you still have that and what else do you have?

04:59 Garrett (Guest): Yes, my chest feels tight, almost 24 hours a day, everyday. Brain fog is another big one. I always feel confused and just kind of out of it. Tachycardia, palpitations have gotten better and worse. My anxiety is pretty bad, but that's kind of just because I feel like being sat on. I've insomnia too. It's always hard falling asleep. I can stay asleep, but it's really hard to fall asleep and that takes me forever sometimes. I stay up most nights just trying to fall asleep.

05:33 Jill (Host): So what does your life look like now? Are you able to go to school? What's different now?

05:40 Garrett (Guest): Well, my coaches and my school staff, my counselors have been very helpful. From the past school year, junior year, the first month or so, two months, I was doing good in school and I did everything as I was supposed to and didn't have any problems. But since I've gotten the acute symptoms with everything, it's been very hard to concentrate and just do schoolwork. So, they've been very helpful and lenient and trying to help me do the best I can for that.

06:12 Jill (Host): Did they notice a big difference in you? Like, are you the same person now? Or like a year ago, if I had talked to you, would you have sounded or acted any different?

06:21 Garrett (Guest): Yes, I'd say I'm a very different person now. The whole thing is kind of opened my eyes to the POTS and the silent disability that most people don't know about.

06:32 Jill (Host): So have you tried a lot of different things to try to help? And has anything made a big difference?

06:37 Garrett (Guest): Yes, there's a long-haulers COVID group that we see a lot of good stuff from there, just to read what other people have done. That way we can figure it out. We've tried many different medications and some help, some don't help at all, if not making it worse. I've recently been seeing a neurologist in Chicago for my brain and trying to reroute everything, 'cause I think that's a big part of it. So I've been seeing them for the past three weeks and I think they're doing a good job. They're the first, people that have told me that they think they know the answer.

07:18 Jill (Host): So that sounds hopeful. Is that something where you have to do some exercises often? And is it kind of like dynamic neural retraining programs where you have to do a lot of work?

07:29 Garrett (Guest): Yes, it's kind of just rerouting my brain with my eyes. My eyes I guess are not where they should be, so they have me doing eye exercises and depth perception and balance. And I've been using a hyperbaric chamber that seems to help a little bit.

07:50 Jill (Host): So, it almost sounds like you still are training, but instead of hockey now it's basically just to kind of get your life back?

07:57 Garrett (Guest): Yes.

07:58 Jill (Host): Does it feel a little similar? Like, do you feel like all your discipline from other kinds of sports training is helping?

08:06 Garrett (Guest): I feel like that kind of helped me be able to do these things. Like, mentally it’s a lot, but if you can do it, it definitely helps.

08:16 Jill (Host): So, at this point, what's the best type of support that friends or family could give you?

08:23 Garrett (Guest): My family's been really helpful, and friends have been really supportive of all that's gone on, and sometimes there's no way to help really. So, just like their support and just being there is all I really need.

08:37 Jill (Host): So it sounds like you were pretty social before all this happened. Has that changed or have you managed to do it remotely or how has this changed your social life?

08:46 Garrett (Guest): I'd say I'm still a social person, so I try and find ways to connect with friends and do the best and 'cause that's a big part of my life is just being able to be a teenager and hang out with friends and do teenage things. My anxiety and all my problems have kind of made it hard to drive recently, so I can't really go drive to see them as much as I'd like to. So that's had an impact on my social life. I'm constantly seeing doctors pretty much all day, every day. It kind of takes a big chunk of time now.

09:20 Jill (Host): Yeah. Is there anything that you know now about living with POTS that you wish you had known sooner?

09:19 Garrett (Guest): Yeah. I wish it wasn't so difficult to do most things, like most teenagers are able to go workout and have fun. I kinda have to discipline myself 'cause I know if I do one thing it'll affect the rest of the day, if not the week, if I go and do something too exerting or whatever it may be, that has a big impact on just having a normal day.

09:54 Jill (Host): So are there parts of your day or week that you feel like are the most frustrating because of POTS limitations? Like you mentioned working out - is there any other time that it kind of comes up where it feels frustrating that POTS limits you?

10:09 Garrett (Guest): Just getting out of bed can be tough sometimes. Some days I just don't feel like I have the energy. Fatigue [inaudible] has been a big part of my life now, too. So, I have to really watch what I'm doing, otherwise it'll really affect my day. So I gotta kind of prepare my day so I know what I can and can't do, so I make sure I don't have a panic attack or whatever, 'cause my body will read that I'm tired and it'll affect my day.

10:38 Jill (Host): So can you talk a little bit more about that? So do you mean like when you wake up in the morning, you have to like think through what you want to do that day and manage your energy for it? What does it look like on a day-to-day basis?

10:52 Garrett (Guest): When I wake up, at least for the last three weeks we leave early in the morning and are back around 3-ish in the afternoon after my wide gap of appointments. And sometimes there's a lot of walking involved, so I have to kind of walk slower or not talk as much or whatever it may be just to have enough energy and not feel as fatigued just to get to my appointment.

11:16 Jill (Host): Wow! So even talking might be too much energy for you. So I'm guessing that a year ago when you were in shape for hockey and doing all your sports, I'm guessing there was not an amount of walking that you had to think ahead about. But now, how much walking can you do in a day? Is it like a real small amount? Is it a lot so long as you don't push it? Or where are you at, and I'm also curious about, like, talking how much talking is too much for you?

11:46 Garrett (Guest): Well, I don't really track like my steps or anything, but there's kind of like a point I realize in the day where I know I can't push myself too much more or I won't feel as good as I normally do. Salt is a big part, too. I know the more salt I intake, the better I'll feel.

12:05 Jill (Host): OK yeah, so you kind of just feel it. So what activities do work for you these days? You had mentioned guitar, is that something that you can do that works these days?

12:16 Garrett (Guest): Yes. I mean, sometimes I'm not even feeling good enough to do that, but since I can't really do much exercising or play the sport I love to play, I've kind of resorted to that and drawing and just kind of stuff I don't have to exert myself or that's kind of what I've realized I like to do.

12:35 Jill (Host): So you've probably heard a lot of other POTS patients mentioned that when they got sick, people maybe doubted them and thought that they were just being lazy or it was all in their head. Did you ever encounter any of that?

12:50 Garrett (Guest): Yes, I've pretty much encountered it all my doctor visits. Most doctors think it's anxiety, just anxiety, or they think it's in my head and that I'm completely fine, but I've known since about the 4th day of me getting COVID that it's not just anxiety. There's reasons behind it.

13:09 Jill (Host): And did you have people supporting you, like family or people close to you, so that it wouldn't be you going it alone just trying to stick up for yourself?

13:17 Garrett (Guest): Yes, my dad and my mom and my whole family has been more supportive than any doctor’s been. So, they've kind of been right there with me the whole time, which has been nice.

13:29 Jill (Host): That's great, has anything positive at all come from your having POTS? Is there any silver lining whatsoever?

13:37 Garrett (Guest): Yes. I've realized since the whole thing has happened that I'm more thankful than I ever could have been, just to see another day is really nice and just be able to not live life to the fullest, but to still be here is a blessing.

13:54 Jill (Host): That's great. So I have to ask - you mentioned that you have insomnia, and you presumably tend to lay there for a while trying to fall asleep. I would like to hear what other people do during that time 'cause I'm always looking for something better to do. Do you listen to something or think about anything or...?

14:12 Garrett (Guest): I've always been a very big over thinker, so thinking is definitely up there. I listen to music a lot. That's kind of my, like, get away. So when I'm trying to fall asleep, I listen to music or podcasts, whatever it may be to kind of help.

1:28 Jill (Host): Yeah, I do podcasts too. I feel like funny podcasts probably saved my life just from passing the hours that way. So, we have something that we call the speed round and we know that it's cruel that when you have brain fog asking you to just say the first thing that comes to your head, we might get anything. But are you up for playing that?

14:47 Garrett (Guest): Yes.

14:48 Jill (Host): Cool. OK, what is your favorite way to get salt?

14:52 Garrett (Guest): I'd probably have to say chips.

14:55 Jill (Host): What is the drink that you find the most hydrating?

14:59 Garrett (Guest): I really only drink water and milk or orange juice. So, I'd have to say water.

15:05 Jill (Host): OK. What is your favorite time of the day and why?

15:09 Garrett (Guest): Probably late afternoon. I kind of realize that the day's over and I don't have to walk as much or whatever. So, I like the end of the day where I can kind of just relax and play guitar or whatever.

15:22 Jill (Host): How many other POTS patients have you ever met in person?

15:26 Garrett (Guest): Actually, I haven't met any.

15:28 Jill (Host): How many do you think you know online?

15:31 Garrett (Guest): Probably 5 or 6.

15:33 Jill (Host): What is one word that describes what it's like living with a chronic illness.

15:39 Garrett (Guest): Awful.

15:40 Jill (Host): What is the best advice anyone has ever given you about anything?

15:45 Garrett (Guest): Just to keep pushing and don't ever give up 'cause there’ll be a light at the end of the tunnel.

15:51 Jill (Host): What is something small that gives you comfort or joy?

15:56 Garrett (Guest): Stuffed animals.

15:57 Jill (Host): Me too. Who is someone you admire or someone that you aspire to be like?

16:03 Garrett (Guest): I aspired to be like my mom and my dad. Both of them have different qualities, but I'd like to have all of them.

16:12 Jill (Host): Can I ask for details? What qualities do either of them have that you admire?

16:17 Garrett (Guest): They're just all-around positive people and see the bright side on things and are very driven people. Those are two big ones I like, but they're very caring people and care about what's going on in your life and what they can do to be the best parents they can be.

16:35 Jill (Host): Yay, mom and dad! Thank you. OK, what is something that you're proud of?

16:40 Garrett (Guest): So that's a good question. I'm proud of who I've become over the past 18 years. I feel like I've grown and developed a lot and learned a lot about myself and learned a lot through other people just to be the best person you can be and strive to be even better.

16:59 Jill (Host): Was there a time when you were meeting more angry or bitter that this happened to you and did you have to like work through that?

17:06 Garrett (Guest): Yes, sometimes I still am kind of bitter about it, but I try and see the positives. The first couple months were really tough, and I just didn't think anything bad could happen to me. I'm kind of bitter about stuff like that, but I've learned to learn and accept it the best I can.

17:26 Jill (Host): So what gives you strength to deal with all this?

17:29 Garrett (Guest): My family gives me strength just to be able to one day do fun and exciting things and just live life with them as long as possible and just know that there's better part that comes after all this and happiness, so...

17:47 Jill (Host): Yeah. What is something that you're grateful for?

17:52 Garrett (Guest): I'm grateful that it did happen to me 'cause if it didn't, I feel like I could still be arrogant and just not as thankful as I should be for being able just to live life. I'm thankful it kind of did happen to me 'cause I've realized that life is pretty short, so you gotta learn to just kind of enjoy it to the best of your knowledge and ability.

18:15 Jill (Host): Wow, that sounds incredibly mature. That's amazing. Can you finish this sentence - POTS isn't visible, but people might suspect you’re a POTSie when...

18:29 Garrett (Guest): I walk really slow or talk really slow.

18:32 Jill (Host): So, I just have a couple more questions. Is there anything that you wish more people knew about POTS?

18:40 Garrett (Guest): I wish people would see everyone how they are mentally stable, 'cause a lot of times people just assume everyone’s life is so great or they have nothing going wrong with them. Like, I look like I'm healthy and fine and have nothing going wrong. But on the inside, there's a lot there. So, I wish people just want to assume everything and realize that everyone does have problems and faults that they need to work on before they assume everyone’s life is normal and great.

19:16 Jill (Host): Yeah. Is there anything that you would say to any new POTS patients out there who might be, you know, in their first days or weeks where you were almost a year ago?

19:29 Garrett (Guest): Yes, I'd say you just gotta push through the bad days and hope to get days still good, 'cause there's definitely good days, and there's definitely really bad days and the really bad days - we just don't really want to do anything and wish would go away. So you kind of just have to push through the bad days and hope that the good days stay good. And in longer term - I hope you see the end of the tunnel 'cause I know what I've been through a lot and I'm just glad I'm still here and thankful for being able to see the next day.

20:05 Jill (Host): Yeah, wow! I think it's so valuable to hear you say that. So, thank you. My last question is, why did you agree to let us share your story today?

20:18 Garrett (Guest): Just to bring attention and to help fund towards the POTS ‘cause a lot of people don't know about POTS and it really does affect a lot of people’s lives. So, I just hope people can realize that there's more to it than what they don't know.

20:38 Jill (Host): Yeah. Well, thank you so much for sharing your story and letting people see what goes on when POTS can kind of take over. I hope that things just get better and better for you, and I hope that you're back on the hockey rink again before too long. We really appreciate your sharing everything with us. So hey, listeners, remember this is not medical advice and never is. Consult your healthcare 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.

21:15 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]