POTS Diary with Jessica from North Carolina, a college student who loves to skateboard

POTS Diary with Jessica [00:00:00] Jill Brook: Hello, fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Jess. Jess, thank you so much for joining us today. [00:00:14] Jessica: Thank you so much for having me. [00:00:15] Jill Brook: Okay. Let's start with basics. How old are you? [00:00:19] Jessica: I am 27 years old. [00:00:21] Jill Brook: Where do you live now and where did you grow up? [00:00:24] Jessica: So I am originally from Elizabeth City, North Carolina, and I currently live in Greenville, North Carolina for college, finishing out my bachelor's degree in psychology. [00:00:35] Jill Brook: Oh, fantastic. So what is North Carolina like for those of us who have never been there? [00:00:40] Jessica: Anything from beaches to mountains. I actually grew up on the east side, so flat land which is great. And being in Greenville it's known for East Carolina University where I currently attend. They rank as number six nationwide. And America's top online colleges they're number one in producing medical grads who practice in North Carolina and is the only university in the state with a dental school, medical school, and college of engineering and technology at the same institution. [00:01:10] Jill Brook: Wow. That's fantastic. So next question. What do you enjoy doing or what are you passionate about? [00:01:18] Jessica: I love going to concerts, skateboarding on my good days, going for walks and spending time with friends. [00:01:26] Jill Brook: Great. Okay. And how would those friends describe your personality? [00:01:31] Jessica: Very caring, loving, always willing to help others. Open-minded and a strong voice when it comes to advocating for the things that are important to me. [00:01:40] Jill Brook: Excellent. So can you give us a snapshot of what your life looked like before POTS and tell us how long ago you'd have to go back in time for that case to be [00:01:53] Jessica: Before POTS, I actually fought a brain tumor and epilepsy during the first four years of my life. After I became brain tumor free, I did live a fairly healthy and active childhood until one day I began to have episodes of pre-syncope upon standing in my teenage years. [00:02:12] Jill Brook: Wow. So do you have any memory of fighting the brain tumor when you were up to four years old, or is that all just something that your parents tell you about and you don't actually remember it? [00:02:26] Jessica: I don't really have any memory of my life prior to brain surgery. I was diagnosed with a brain tumor not long after I was born, I was only an infant, and that's like a really crucial stage for brain development. So they were hesitant to do surgery. Unfortunately, I had seizures associated with my tumor, and for the first three years of my life, most surgeons were too hesitant to operate on me. And they told my mom that I may not walk or talk or function normally if I made it outta surgery. I was very heavily medicated due to like the seizures and all of that. Before we finally found a surgeon we were really trying to keep the seizures under control, but fortunately, a world renowned surgeon at Yale and Connecticut operated on me. Just after my fourth birthday. I'm a 23 year survivor, seizure free. I do have lingering effects, including POTS, but I can walk and talk and do all the things. I don't know what normal is, but I do function and I am capable to be independent, and for that, I'm very grateful and fortunate. [00:03:37] Jill Brook: Wow. Wow. So you fought more difficult things by the age of five than most people have fought in their whole life. Wow. Wow. So then when the POTS came on, what did you or your family think was going on? Did they connect it back to the epilepsy or the brain tumor or They were like, this is something new. [00:04:01] Jessica: I showed really vague signs of POTS as a teen. It was really just like these random episodes of lightheadedness and pres syncope that didn't really happen often or that frequently until college. So I kind of just thought of it like, oh, maybe I just stood up too fast and it was really just shrugged off until it really became more over time. [00:04:23] Jill Brook: And what did that look like when it became more. [00:04:26] Jessica: Scary. I mean, I wasn't sure what was going on again, I just thought I had a bad habit of standing up too fast. I used to be like a really on the go person and at some moments I just wondered if maybe it was just kind of like a neurological lingering effect from what I went through as a kid and, you know, the brain damage and from the seizures and it just kind of made me a little off. That's, that was kind of what I thought at first. [00:04:52] Jill Brook: So at what point did you decide it was worth seeking medical help? [00:04:56] Jessica: My first time seeking medical attention was Halloween of 2017. I was at my apartment when my heart just started beating out of my chest and I was feeling sick. I had a friend take me to the hospital, thankfully, cuz I passed out in his car on the way there. That was the first time I passed out and next thing I know, there were nurses trying to make me alert enough to get out of his vehicle. They were questioning about my medical history. They didn't know if I overdosed on something, if I was, you know, possibly having a seizure given my history. Just all of these things, and they wheelchaired me into the waiting room where I sat for hours. Basically long enough for my blood pressure to go back to normal and things to come back to a normal level. So by the time that I was actually seen, it was really just written off as an anxiety attack. [00:05:51] Jill Brook: Oof. So then how long did it take and how did you get diagnosed with POTS? [00:05:56] Jessica: I was actually visiting a few friends on spring break in Tampa in 2018. It was about five or six months after the other emergency room trip, and that's when the POTS symptoms absolutely hit their worst, and I was very confused of what was going on in my body. My heart rate was constantly reaching the 130s to 160s. My blood pressure kept dropping and my friends knew that something was really off, so they took me to the hospital There. I was one of the youngest people in an adult cardiac unit for three or four days. I was only 21 years old. They were doing blood work every six hours. Every time my blood pressure was taken, it was low. They did a stress test and my heart rate was high the moment I got on the treadmill. They did a tilt table test and that was the tests were electrophysiologist knew it was POTS cause the table was going up and my blood pressure dropped and my eyes just about rolled to the back of my head, and I barely managed to remain conscious. [00:07:03] Jill Brook: Wow. So did you ever have any time during the whole diagnostic process where anyone, especially physicians, were saying it was all in your head? [00:07:13] Jessica: Prior to the cardiac unit trip my primary doctor usually tried to say in a professional way, you know, blame it on anxiety, and it was frustrating, but I just knew, like, I know how stress and anxiety affect my body and it didn't sound right for my body or like, you know, my heart rate to go beyond 150. Like that just sounded like more than anxiety. And I can understand like a mild elevation and heart rate, but not for it to go that high and to cause me like an episode where I feel like I'm going to pass out. [00:07:48] Jill Brook: You know, you're making a great point, and I wish somebody would do a study, or maybe they have to look at what people's heart rates do when they have anxiety. Either an actual anxiety attack or maybe chronic anxiety so that we could compare and know is POTS even resembling that, or is it just something people say? [00:08:09] Jessica: For me, actually, the one way that I realized whether it was a POTS episode or if it was my anxiety, is some moments where I actually had high anxiety, I would look at my Apple watch and my heart rate was actually closer to normal. [00:08:24] Jill Brook: Ah. [00:08:25] Jessica: Which was interesting to me cause I was like, you know, maybe it's anxiety, like, let me check my heart rate. And it's like, okay, well it's actually not in the tachycardia level. So maybe, you know, that is just anxiety related. [00:08:37] Jill Brook: Right. So what are your worst symptoms now? [00:08:41] Jessica: Definitely brain fog, fatigue, gastrointestinal issues. Dehydration has been a big one recently. Living in North Carolina, heat intolerance has had a big impact on my blood pressure and tires me very quickly. [00:08:56] Jill Brook: Were your doctors able to identify any trigger or underlying cause of your POTS? [00:09:03] Jessica: For the longest time, that was a big question for me, like, what on earth caused this and it was actually very recently I came by a study that found that individuals with epilepsy had a higher level of autonomic dysfunction. And I curiously asked my doctor and actually a few of my doctors to get several opinions, like, can this be what caused it? And they said, you know, given my history and the severity of seizures I had, that it's not a surprise to them at all that it's made a negative impact on my nervous system and come to this diagnosis. [00:09:41] Jill Brook: Okay, because seizures can do some damage to nerves. Is that the thinking? Do you know? [00:09:48] Jessica: Well, my seizures in particular they actually cause like a lack of oxygen to my brain. It would kind of like cut off the oxygen supply and then, you know, when you deal with POTS, it's like kind of that lack of blood flow. [00:10:02] Jill Brook: mm-hmm. [00:10:03] Jessica: it kind of has a comparison in a way. [00:10:05] Jill Brook: Yeah. Okay. So how has this affected your work or your schooling? I know you mentioned you're going to an online university. Is that Partially because of this. [00:10:16] Jessica: Well, they're ranked highly for online. I do attend campus. Yeah, it feels rare for me to be lucky enough to get classes like on a first floor. So definitely taking an elevator instead of stairs. Stairs are very quickly tiring cuz they, cause you know, the blood pulling in my legs and it gets very exhausting very fast. And over time I also had to reduce my course load due to brain fog. And it's too hard for me to concentrate on multiple subjects. So I'm finishing out part-time. [00:10:53] Jill Brook: Okay, great. So what is the biggest life change you've had to make because of POTS? [00:11:00] Jessica: Having to be mindful about everything that I do, especially in public, because POTS is one of the most unheard of yet common chronic illnesses. And if something happens to me, most of the general population doesn't know what's wrong or how to help, and also having to become a teacher to educate those that I do spend a lot of time with so that they know how to help when things get bad. [00:11:26] Jill Brook: Have you felt like you've been successful at that? Are people receptive to learning about POTS? [00:11:32] Jessica: Yes. [00:11:33] Jill Brook: Fantastic. Okay. So has chronic illness changed you very much as a person, do you think? [00:11:40] Jessica: yes. Mentally it's made me more mindful of my body and physically it makes me feel like my body is jumping between 17 and 57 years old depending on the day and symptoms. My good days, I feel 10 years younger and the bad days, I feel 30 years older. [00:11:58] Jill Brook: What is the hardest thing about living with POTS? [00:12:01] Jessica: The uncertainty of when symptoms can hit, and having to always keep that in the back of my mind, especially with how random my episodes of pre-syncope peak can be at times, and still to this day, learning all of my triggers. [00:12:18] Jill Brook: You know what's so funny that you say that, that it reminds me that I had a surprise trigger come along just the past couple weeks because we've been looking to buy a house and we've been doing FaceTime tours of it, and it's amazing to me how even just a 15 minute FaceTime. Has made me so sick and feeling car sick and it sets me off for hours just from looking at a moving screen. And I thought, wow, that's a weird trigger that hadn't occurred to me before. But it's amazing that, you know, I've had POTS for like 30 years and I'm still finding new triggers. Have you tried a lot of different things to help your symptoms? [00:12:55] Jessica: Yes. There's a lot of trial and error when it comes to learning how to manage your symptoms. For me, it's been dietary changes, figuring out a workout routine that I can do without overworking my body, getting enough sleep, and definitely increasing my sodium intake. [00:13:13] Jill Brook: And so at this point, who or what helps you the most with managing your POTS? [00:13:20] Jessica: Honestly, maintaining a strong mindset is helpful for me managing POTS. I know that my body is a bit dysfunctional and I've learned to accept that because if I don't, our minds are capable of dragging our bodies down with it. And with POTS, you have to feed your mind with some grace and give yourself credit for doing what you can, regardless of how small the things are that you do. [00:13:46] Jill Brook: Can I ask, do you have any specific little ways that you get that mindset? Like do you meditate or practice gratitude or like anything? Or you just decided to do it and then it came easy. [00:13:59] Jessica: It's kind of funny. I kind of treat POTS like a second person, so it's like, okay, so this is what we're gonna do today. [00:14:07] Jill Brook: And you negotiate. [00:14:09] Jessica: Yeah, we negotiate a lot. [00:14:11] Jill Brook: That's really smart. I like that. And over time have you seen any change in your symptoms? Like, has doing all this stuff made you a lot better? A little better. [00:14:22] Jessica: For better and worse, I don't have as many extreme tachycardia episodes, which is nice because there were episodes where it did hit as high as 200 beats a minute. But currently, my biggest challenges are the GI issues and the brain fog, and again, that harder times to stay hydrated. [00:14:43] Jill Brook: So at this point, what is the best type of help or support that friends or family can give you? [00:14:49] Jessica: A listening ear, validation and reassurance. I know my friends and family can't fix my problems, but knowing that someone is simply there to listen, believe what I'm saying, and reassure me that I will figure out how to manage this and that I'm going to be okay, is very helpful to me through the challenging times. [00:15:11] Jill Brook: Yeah, you sound really mentally strong. So what are your favorite activities or hobbies these days? [00:15:16] Jessica: When I can be active, I like going for walks and skateboarding when my body needs rest, I like to either watch movies, color in adult coloring books, or zen tangling to keep my mind occupied. [00:15:30] Jill Brook: So that's a little bit interesting to me. Skateboarding is very impressive sounding to me like you must have times when you are highly capable and have amazing balance and agility and fast reaction times. So how often do you have those times when you can you know, kind of basically be symptom free enough that you can skateboard? [00:15:50] Jessica: It's more seasonal for me, so closer to the fall and like early winter, so it's cooler and not too cold outside. It's kind of about getting the weather right too so I can kind of keep my body is a no for skateboarding. [00:16:05] Jill Brook: Oh, okay. Yep. Do you have any mantras or words of wisdom that you live by? [00:16:11] Jessica: My personal mantra is I am stronger than yesterday because it serves as a reminder that I have survived a hundred percent of my worst days so far. And if I have been capable of making it this far, then I am continually becoming stronger than who I was. [00:16:27] Jill Brook: Right on. Is there anything that you know now about living with POTS that you wish you had known sooner? [00:16:34] Jessica: Just how much trial and error there really is in figuring out how to manage my symptoms. I'm pretty sure I'm speaking this for many people with POTS, but everything we've learned over time that works for us we wish we knew sooner so that we could have had many more manageable days in the early times of our diagnosis, but you have to trust the process and find patients within the processes. This is not gonna be something you're gonna figure out overnight. [00:17:03] Jill Brook: Yeah. Okay. Is your brain up for a speed round where we ask you to just say the first thing that comes to your mind? [00:17:12] Jessica: Sure. [00:17:13] Jill Brook: Okay. What is your favorite way to get salt? [00:17:16] Jessica: Chips. [00:17:17] Jill Brook: What's your favorite way to hydrate? [00:17:20] Jessica: strawberry Watermelon Gatorade. [00:17:22] Jill Brook: What's your favorite time of the day and why? [00:17:26] Jessica: The first five to 10 minutes after I wake up in the morning because I don't immediately get out of bed, I actually take the first five to 10 minutes to appreciate the fact that I woke up and over 90% of the time, it's the first few minutes of my day I don't have symptoms because I'm not really awake yet. [00:17:44] Jill Brook: Wow. You know, I have heard a number of patients at this point say that when they wake up, they feel grateful that they did. And I just feel like that's a testament to how sick people feel. I know I've had that feeling too. And it kind of kills me that so many people who are young, are already just feeling grateful to wake up. But I guess it beats the alternative. Okay. Next question. How many doctors have you seen for POTS? [00:18:10] Jessica: Several. [00:18:11] Jill Brook: How many other POTS patients have you ever met in the flesh? [00:18:16] Jessica: not many. Maybe three. [00:18:18] Jill Brook: What is one word that describes what it's like living with a chronic illness? [00:18:24] Jessica: Complicated. [00:18:25] Jill Brook: What is something small that brings you comfort or joy? [00:18:30] Jessica: lyrical connection to songs. [00:18:33] Jill Brook: Oh, can you say what that means? [00:18:35] Jessica: like having the connection with music. Hearing this really good song is just the lyrics. It's so much easier just to connect with music. It kind of speaks the words that you wish that you had. [00:18:47] Jill Brook: Yeah. Do you have any particular song that is kinda like a go-to when you need to pick me up? [00:18:54] Jessica: Move along the All-American rejects [00:18:57] Jill Brook: Okay. I don't know that one, but I'm gonna go look it up now. Who is someone you admire? [00:19:03] Jessica: my mom. [00:19:04] Jill Brook: Why? [00:19:05] Jessica: She's been through a lot. Especially with me through the brain surgery and just everything that's come next in my life, and she's always been there. [00:19:15] Jill Brook: Oh, yay. Mom. What is something that you're proud of? [00:19:19] Jessica: myself for being resilient through all of the trials and errors with POTS. [00:19:24] Jill Brook: What is the hardest thing about living with POTS? [00:19:28] Jessica: Not just the uncertainty of what tomorrow could look like for me, but even five minutes from now. [00:19:34] Jill Brook: What is something you are grateful for? [00:19:36] Jessica: I've become very grateful for this podcast because it's given me the opportunity to listen and learn from other people's experiences with this condition, and it really serves as a reminder that I'm not alone in this battle and that there really are other people who understand the everyday struggles that many of us with POTS deal with. [00:19:57] Jill Brook: Okay. Last speed round question. Can you finish this sentence? People might suspect I'm a POTSie when? [00:20:05] Jessica: When you literally need a shoulder or wall or something to lean on to stay on two feet. [00:20:11] Jill Brook: Right on. Okay, so I just have a couple more questions. What do you wish more people knew about POTS? [00:20:17] Jessica: If POTS were a book, it is definitely one you shouldn't judge based on its cover because internally it is very complex. And from a body standpoint, our external appearance of looking fine from the outside is like a mask to what we feel inside mentally and physically. So we can look fine from the outside while our bodies internally struggle to find homeostasis because there's constantly something within our autonomic nervous system that's a little dysfunctional and outta whack. And I also wish that doctors would consider our symptoms more from a physiological view than mental, so that it wouldn't take as long for many of us to reach a diagnosis. [00:21:05] Jill Brook: For sure. And last question, is there anything you'd like to say to your fellow POTS patients out there listening? [00:21:13] Jessica: You are not alone and never let anyone who hasn't been in your shoes tell you how to tie your laces because you know yourself better than anyone else and what works best for you as far as managing this diagnosis. [00:21:27] Jill Brook: Wow, you sound so wise. I wish I had been like that at your age. Jess, thank you so much for sharing your story and I know that everybody listening is wishing you just all the best going forward. I hope 99.999% of all your challenges are behind you. [00:21:45] Jessica: Thanks again for having me. [00:21:48] Jill Brook: Oh, thanks for being here. And hey listeners, we hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone, and please join us again soon.