Latest / The YMyHealth Podcast | Wellness and Healthcare Insights for Millennials / POTS Patient Story: Alexandria Yarborough, PharmD
Transcript
- Julie Woon (00:42) Hi everyone. Thanks for joining the YMyHealth Podcast. I'm Julie Woon and I'm today's co-host. And today we are once again joined by Alexandria Yarborough. You may remember her from one of our earlier episodes where we talked about the 2024-2025 flu season. And today she joins us to talk about her experience with POTS. So welcome back to the podcast, Alexandria. Alexandria Yarborough (01:05) Thank you so much. Julie Woon (01:07) Just before we get started, can you give the listeners, since some of them may not be familiar with POTS, just a brief explanation of what it is? Alexandria Yarborough (01:17) Sure, absolutely. So POTS is also known as Postural Orthostatic Tachycardia Syndrome, or POTS for short, it's a lot easier to say, but it is a dysregulation of the autonomic nervous system. So it's also known as dysautonomia. So basically some of my systems that are usually normal and everyone kind of act up without any triggers or without any explanation. Julie Woon (01:44) And can you talk about some of the first symptoms that you noticed, you know, before you were aware of maybe pods or maybe diagnosed even just what you were feeling that triggered something inside of you to say like, hmm, something just doesn't feel right. Alexandria Yarborough (01:58) Sure. So everything started for me back in 2020. I had COVID, and it was a pretty severe case. This was before the vaccine. So there really wasn't much you could do. I was out of work for a while and I was in bed most of the time, but I did recover. And then a couple months later, I started having severe chronic fatigue and then I started almost running hot. It wasn't a hot flash and I wasn't necessarily sweaty, but like if I was to vacuum, I would just be exhausted and just felt like flushed. So, that was really kind of the first symptom that I had. So then months later, I started having sleep issues. I was having trouble. I wasn't sleeping through the night. Or if I was, when I would wake up, I would feel like I hadn't rested at all. And then in 2022, so about two years later, all of this is kind of gradual. Some days are worse, some days aren't so bad, but my heart rate started increasing. So I could no longer exercise. Couldn't cook a meal. I couldn't do some of my crafts and activities. It was just really interfering with stuff. So I had an increased heart rate, still had that fatigue, sleep issues. And then since my heart rate was up, I couldn't take my ADHD medication anymore because it's known to increase heart rate. So that kind of stunk. So then my brain fog went up as well. So, then I had just all these unexplained symptoms and just didn't really know what to do. I had some presyncope or almost fainting at work. And then randomly that would have numbness or tingling in my hands and feet. So it was just, it was a rough time because I just had no idea what was going on. And it felt like all different parts of my body just weren't cooperating for no reason. Yeah. And we hear from a lot of POTS patients and those who are living with POTS that Julie Woon (03:50) It is this amalgamation of these different symptoms and a lot of people really struggle to get diagnosed. So could you talk to us a little bit about what your journey was to being diagnosed with POTS? Alexandria Yarborough (04:02) Sure, absolutely. So I had a rather quick diagnosis, which is about six to eight months, which for most conditions is not very quick at all. But it started with having a great PCP or primary care provider. So, she was really empathetic. She listened to me. I did have to take in some information. So I have an Apple Watch. I actually got an Apple Watch after I started having some heart rate issues because I started to kind of think that maybe I was going crazy because there's no way I could feel like this. And so I was just like, I need some kind of health metric to kind of show me. So one of the cool things is that you can download the data from your health app with Apple. And so I was able to track that. So, since she believed me, I was able to get a referral to a cardiologist. The cardiologist's referral took a little while. I did ask for a tilt table test. That's something that's pretty common with POTS, but unfortunately my insurance didn't cover that, so we kind of had to go a different route. So then we had a Holter monitor. So that is basically a sticky kind of heart monitor that I had to put on my chest, a three-day one and then later once they found some issues with that which was good that they saw something I had to have a two-week one. I've heard that that one is pretty typical but some people have to be on one for four to six weeks to get kind of a better picture of what's going on with them. During all that I also had to get a heart ultrasound just to make sure that the structure and function of my heart was fine and it wasn't an issue with that that was causing the heart rate that was going to be increased. So, I also had to see a sleep doctor and so they diagnosed me with idiopathic hypersomnia, which is a fancy way of saying, we don't know where this comes from, idiopathic and hypersomnia, which is extreme daytime sleepiness. So, for some reason I wasn't sleeping and resting. And so I got that diagnosis and a medication for that. And so then I had my primary care prescriber that helped me with some of my symptoms. And then it was the cardiologist that determined finally that I had POTS at that time. Julie Woon (06:11) Wow. Yeah. So even though it's maybe a short diagnosis for POTS, it's still quite a journey to get to that diagnosis. Alexandria Yarborough (06:20) Absolutely. I had a lot of different appointments. At one point, I also did have to go to an OB-GYN just to switch contraceptive methods, just to make sure it wasn't a side effect from that medication. So even though that wasn't necessarily part of my POTS journey, it was just another step and Trying to navigate appointments, insurance, work schedule, and then not feeling so great was definitely challenging. Julie Woon (06:45) You've mentioned some of the symptoms, but just what does it feel like living with POTS? Alexandria Yarborough (06:49) You know, in your day-to-day life, what does that look like? So one of the things that has been a big adjustment is just kind of what my typical day looks like. So I have to take a special sleep medication every evening. It's a liquid medication. and then I have to wake up in the middle of the night and take the second half of it. So I do that like clockwork now, but I used to have to set an alarm. But as soon as that medication wears off, usually at like 630 in the morning, I'm up. So I'm not able to sleep in anymore. As soon as I wake up, I instantly have to take my beta blocker. It is an extended release medication, but it's something I have to take each and every day to monitor my heart rate. So then I start to get ready for my day. My symptoms have improved, so I don't have to sit down when I shower, put makeup on or anything like that. But if I have to blow dry my hair, the combination of like standing and heat, that's something I will always have to sit down for. It's just too much. If I go to work that day, that is all I do. I might be able to prepare a simple meal when I get home, but I'm not stopping by any stores or running any errands or anything like that. My day's accomplishment is just work and home. I'm not able to exercise on those days. I do have a stool to accommodate me, so that is helpful with working the 10 hour shifts, but it is pretty taxing. Once I get home, I'm able to rest, I have dinner and then usually get ready for bed by 9:30. So that is a busy day. Then I will meditate, read, and take my medicine and start it up again. If I'm off and I'm feeling good, I'm able to exercise. I set my limit at no more than 30 minutes each day. My goal is 15 to 30, but if that doesn't happen. It doesn't happen. I just have to listen to my body. And it's the same cycle on my off days, just the sleep medicine, taking the beta blockers, and then just kind of monitoring my symptoms. And then I have an energy drink in the morning to help out with brain fog around 11 a.m. and then another one at four to replace my ADHD medications that I'm no longer able to be on. Julie Woon (08:52) And on the days that you do work out, what does a workout look like? Alexandria Yarborough (08:55) So for me, it's just walking or just some weight work. It's not anything intense. It's not running. I just don't ever want to exacerbate myself too much or over exert myself. And so it's just mostly just, walking. Julie Woon (09:10) And are there modifications you've had to make, whether that's to work or your social life or other areas of living that have just come with time and your diagnosis? Alexandria Yarborough (09:21) Yes. So, the biggest modification at work is that I do have a stool. So, I have a job that I have to stand for. Nine and half hours a day. And so that can be very difficult. So, I do have that help. Unfortunately, I did have to go through some hoops to kind of get that approved. Accommodations usually require some paperwork, a letter from physicians and other things. With my social life being in my early thirties, I'm not really in my going out era too much anymore. So it hasn't really affected my social life. I do go to bed around nine thirty at night and read and I have to get my rest because that's very important. So, I don't really have any issues there. But I think because of the relationships that I have with my friends and my family and others, I have told them, you know, what my condition is and what it looks like, it makes all that much easier. Julie Woon (10:10) And you kind of talked about this as a typical day. I'm curious as well, what happens when you're traveling, whether that's, you know, for fun or potentially for work, I'm not sure? But curious to see how you manage something like that, which is already I think can be very taxing for somebody without pots. Alexandria Yarborough (10:28) So I have to definitely do my research. So if I'm attending events or doing things, I always have to make sure that I have my medication with me. So I’ll often check like stadium policies and things like that to make sure I can bring in a bag, make sure I have all my medications, even the as needed ones. And then just also their policies for refund too. I've been to an event one time and,you know, I was really excited for it. I was there for the weekend and I was just not. able to go to it. And so I have to do a lot more research and work and preparation anytime I leave the house or go anywhere. Julie Woon (11:01) Are there any misconceptions that you hear about POTS now that you've been diagnosed and living with it for a little while? Alexandria Yarborough (11:09) So absolutely. The biggest one is that it can be cured with exercise. So, a lot of people recommend that you exercise and that's great. If you're having a good day, it can actually very much improve your symptoms. It gets the blood flowing to kind of say it in layman's terms, so it is very helpful. But if you're not feeling that great, it can actually exacerbate your symptoms and make it so much worse if you overexert yourself. The other one is that it's all in your head. And technically that is true. It is just auto-regulation. So it is in my head, but that doesn't mean it's a mental condition. It's not something that anyone asks for or wants or something that they can overcome with the power of positive thinking. It's very much a real illness. Alexandria Yarborough (11:50) Absolutely. How do you handle situations where you're maybe trying to explain your condition to someone who either doesn't know about it or isn't convinced that POTS is actually a true diagnosis? So luckily I haven't ran into that too many times, but the biggest thing is I just have to be honest. I explain to people that I am well managed, but I do have good and bad days. I'll let you know if I need a break or if my symptoms flare up. So I just have to be upfront with people. And sometimes it's people maybe you don't want to discuss that with, if you're with a new friend group or something like that, but it's just a necessity for your health. You just have to set those expectations and let everyone know that I don't want to live with this condition. It stinks, but here's the reality. And this is what you can expect. Julie Woon (12:38) Yeah. And have there been any financial challenges that come with having POTS? I know you've mentioned some of the medications that you have to buy now, but are there other expenses or like lifestyle modifications that come with a cost? Alexandria Yarborough (12:52) Sure. Yeah. So, the medications is the first one. I am thankful that I do have insurance coverage because some of my medications would be expensive. So nothing too out of the ordinary with that, but pots require some healthy eating and that can be expensive. Also, too, I was able to find an energy drink that has a small caffeine in it that follows the Mayo Clinic guidelines for not excessive amounts of caffeine because that's what you find in most energy drinks. Since I'm no longer able to take my ADHD medication, I have to order these from GNC and I think that cost me around $180 to $200 a month just to have those, just to help out with just energy levels and brain fog. So that's kind of an unexpected expense that has almost become like a medication. Julie Woon (13:36) That was not something that I would have thought of or would have occurred to me and I know doctors a lot of times. For a variety of conditions we'll recommend healthy eating, but is there anything specific about the diet that supports POTS that's maybe different from other ways of eating? Alexandria Yarborough (13:52) I think sticking to just kind of like whole foods and just kind of listening to your body could, because some of the things that we eat day to day can cause flare ups and it can just kind of add to some of the other POTS issues. I have had some digestive problems in the past and so anything that can cause a flare up. just mostly whole foods, no dairy. Those are the biggest things. And if you're looking for, you know, healthy foods, it just gets very, very expensive, especially as you know, the prices of everything is going up. Julie Woon (14:22) Yeah, absolutely. One other question that I didn't originally have on the list, but I'm curious because we're talking about, you know, you've really had a good experience with physicians and in getting your voice heard. Do you think that that has anything to do with your background? For those of us who maybe had not joined the first episode that you are on, Alexandria is a pharmacist and so she has a medical degree. And so I'm curious if you think that might've made other healthcare providers more apt to hearing you out or if maybe not, if truly like you've just been very extremely lucky to have physicians along the way who have really believed you and heard you out. Alexandria Yarborough (15:03) I think it's a mix of both. do have some great providers, but they did know before I was diagnosed with POTS that I was a pharmacist. So that was helpful in the fact that I know how the healthcare system works and I know what to kind of not necessarily tell them. I'm never telling my doctor, you know, I think this is what you should do, but I know what they're looking for to try to get the answers to help solve a problem. The biggest thing I could tell anyone to do if you are in healthcare or not is to document. I think it would have been extremely hard for my physician just to hear all my vague symptoms and then try to fix me or to find a referral. I was able to do, you know, the heart rate tracking with an Apple watch, which most of us have. So, please do that for yourself. You know, advocacy is hard. It really is, especially as a patient. I never go in and tell anyone that, you know, I'm a pharmacist. You know, I do let them speak to me like a patient because I'm, I know my, you know, degree of specialty. I know the drug side of it, but I am unfortunately aware of, you know, insurances and how things get approved and how referrals go and how prior authorizations are a pain. So, I definitely think that that helped get a quicker diagnosis, but I still had to go through all the same steps as everyone else. Julie Woon (16:18) A lot of this stuff that you're talking about, like you said, it's both hard on yourself physically, but I'm sure it's also difficult mentally. And so I wanted to see how POTS has affected your mental health and your emotional wellbeing. Alexandria Yarborough (16:32) So it's actually kind of been a great opportunity for me to learn more about myself. I've gotten really into meditation and mindfulness. Mindfulness is kind of the practice of just kind of accepting what is and seeing the beauty in it. And so there are some days where I have to rest the whole day and I want to go out and run errands. I want to be productive, but maybe that day all I had to do was rest and just kind of enjoy just the silence and being alone and realizing that my body isn't behaving how I want it to, but tomorrow is a new day and it could be completely different. So, that's kind of been like a beautiful thing that's happened. I've also started reading all these different self-help books and I've been able to kind of share that with family and friends. So that's been really fun. So we've actually got kind of a deeper connection ever since this started. Julie Woon (16:18) Any books in particular that you feel like have been really helpful? Alexandria Yarborough (17:23) There's one called Abundant Ever After. There's a couple by Depop Chopra. Just really anything that kind of talks about the power of the mind. There's one called Mind Magic that kind of talks about meditation. There are so many. I actually have just a pile of my office right now that I haven't even gotten to, but those are just a few of my favorites. Julie Woon (17:45) Yeah, that's great. You have made these changes to your lifestyle. kind of taking on these practices like you just mentioned with mindfulness. Has there been any change in your personal identity since being diagnosed with POTS? Alexandria Yarborough (18:02) I don't think so. And I think I have a lot to credit to the mindfulness and meditation too, because I'm able to focus on gratitude. I am just a person with POTS. This is still my life. It's still going to be fulfilling. It's still going to be full of good times. I've had to make adjustments for sure, but I know I can do it and I'm just not going to let it stop me. Julie Woon (18:22) Yeah. And have you connected with anybody else who has POTS? Alexandria Yarborough (18:26) I have. I actually went to a conference and they had a POTSies meetup, which was really neat. I had never heard of that. And honestly, I was a little bit scared to go because I just figured like, well, maybe my POTS isn't bad enough. Maybe they're going to think that maybe I shouldn't be here. I was super nervous, but I met some great people. No one asked how severe my symptoms are. They were just super accepting. You if they wanted to talk about something they were experiencing, they were able to do that. And I just, that was one of the most rewarding experiences I've been a part of. Julie Woon (18:59) And have you any lasting relationships? Is it still a community that you engage with and keep in contact with? Alexandria Yarborough (18:26) It is. I'm in quite a few Facebook groups and every now and then I will jump in and kind of share my experiences or answer some questions. Sometimes there will be some medication questions and I feel comfortable doing that. I have kept up the relationships that I met, so I have gotten some good friends out of it. So that's been a blessing because I do have some people that get it. They understand what's going through. As helpful as my family and friends are, they're not kind of living this day to day and that can be difficult. You know, I don't want to burden them. I don't ever want to feel like a burden, but it is a chronic health condition and it does come with those challenges. Julie Woon (19:40) Yeah, absolutely. You mentioned Facebook groups. Is there anywhere else that people who maybe had POTS could turn to or look for other communities online that they can join? Alexandria Yarborough (19:54) Sure. Yeah. There's a two that I really love. It's called stand up to POTS and awareness for POTSies. And then funnily enough, I found YMyHealth when I was looking for POTS answers. So I was looking, at my symptoms and then I stumbled across an article that I believe Melissa had written and it was about POTS. And then, yeah, the rest is history. And then I connected and now I'm, you know, love YMyHealth, and I'm pretty involved. Julie Woon (20:22) POTS for us is a big subject matter that we talk about a lot on the show and a lot about on our website. And we have a variety of people who we've been talking to about POTS as well, including Sarah Diekman of Diekman Dysautonomia. So with that, we're going to take a break to talk about today's sponsor. We'd like to take a minute to talk about today's sponsor, Diekman Dysautonomia. Have you or a loved one been struggling with symptoms like fainting, a racing heart, or crushing fatigue, only to feel dismissed or unheard by doctors? You may be experiencing dysautonomia, POTS, or long COVID. Dr. Sarah Diekman understands, because she has been there. As someone who faced POTS during medical school, Dr. Diekman knows firsthand the frustration of searching for answers. That's why she's turned her fight into a mission, to help patients with these conditions live fuller, healthier lives. With her expertise from Johns Hopkins and a commitment to listening and truly understanding, Dr. Diekman offers compassionate, cutting-edge care tailored to your unique needs. Visit DysautonomiaExpert.com or call 833-768-7633 to begin your journey today. At Diekman Dysautonomia, your voice won't just be heard, it will be deeply understood. Julie Woon (21:26) You talked a little bit about having discussions with people about your condition and what limitations it might cause, but how has POTS affected your relationships, whether that's your friends, your family, or romantic partner? Alexandria Yarborough (21:50) So, I am very thankful that it hasn't affected it too much, although I do have to let people know that I am living with a chronic condition pretty much when I meet them. If we're going to go do something, if we're going to go hang out, it's something that I never had to do before. i usually don't discuss any of my health issues. They're usually pretty private, but it's just something that everyone around me has to be aware of in case I'm not feeling well or if they need to get help. I haven't passed out in years now, but that had happened at work and my employees had no idea what to do. They, you know, were kind of startled by it. And I mean, I was myself as well. That was early before I was diagnosed. It's just something that I have to discuss that kind of makes yourself very vulnerable when you're meeting new people or even just people that you know know that this is not something you ever thought you would talk about. Julie Woon (22:40) When you are managing symptoms, how do you maintain social connections? Does that make it harder or is it something that because you've had these conversations, you know, sort of from the start that people are already anticipating? Alexandria Yarborough (22:54) It still is difficult, especially since I do have to go to bed every night at 9:30 or at least start getting ready for bed. Because if I don't sleep, I'm not going to feel good tomorrow at all. It's a non-negotiable. So, if there's a movie premiere or a later event or if dinner's running long, that can be really difficult. I have to kind of sacrifice that or just know it's not for me. I know a lot of times when we're in our 30s, we're not really trying to stay up to see the ball drop for New Year's Eve or anything like that. It's not necessarily a priority. But you know, sometimes I would like to, I would like that option. I'd like to, you know, go to later movies and, you know, watch maybe a TV show that comes on, but it's just something that's not really in the cards anymore. Julie Woon (23:37) Makes sense. What's been the most helpful in terms of support from maybe from your family and friends, but also, you know, healthcare providers? Alexandria Yarborough (23:47) So, the biggest thing that is helpful is just that they are empathetic and able to listen to me. I think it would be extremely difficult if I had to try to prove myself or to try to explain exactly what I'm feeling. It was such a challenge to get diagnosed and that was with empathetic providers. And once that did trust that I knew I was talking about and not trying to just be like, I read this thing on the internet about POTS, I think I have it. So, I'm just really thankful for everything that I do have with the family and friends and healthcare providers. Julie Woon (24:19) What changes would you like to see in the medical community and the way that it approaches POTS? Alexandria Yarborough (24:27) I would love to see a change in just treating the symptoms. So, especially since I had sleep issues, heart issues, fatigue issues, all these different things, it kind of seems like doctors a lot of times are ready to just write a prescription for each different symptom. So, I would like to kind of look for more of a ‘why’ instead of just slapping a band-aid on it, because that can be really harmful when we start taking a bunch of medications. The other thing I would like to see is just acute and chronic goals since POTS is a hard condition to kind of navigate. If we could kind of look at some of the problems that are affecting us day-to-day and then kind of what some of the long-term implications could be. However, I think that's going to take some collaboration. It's really hard when you have a specialist for your heart, for sleeping, and your primary care provider. So, I love the fact that we have electronic charting now. Almost every healthcare system is online and iIf you stay within the same hospital system, a lot of times they do have access to those records. So that is really nice if they're able to collaborate, but just it's going to take a whole team for POTS treatment. Julie Woon (25:35) Totally. What has living with POTS taught you about resiliency and self-advocacy? Well, for me, I never thought it was going to happen to me. I was a healthy 28 year old. It's made me extremely grateful for health. Alexandria Yarborough (25:50) Life can change in an instant. So, it's really important to practice gratitude. You cannot buy good help. That is another thing that I have learned. There is not a, you know, special fix-all medication or any type of exercise that you can do just to make this go away. that, you know, applies to all different chronic conditions. So, I never thought it would happen to me. I think a lot of people think that when they're diagnosed with something like this. Julie Woon (26:16) Are there any other, I guess, tips or tricks that you would give listeners or somebody who's maybe recently been diagnosed with POTS? Alexandria Yarborough (26:24) Sure. Yeah, I would keep a journal. That is one thing I did. So, I had the heart rate information, but you know, it can just literally be a piece of paper with a calendar that says like, you know, your symptoms can be very simple, like heart rate up, or it could just be like sweaty or it could be didn't sleep well. That way you have data to give your doctor because data is how we make decisions is how we get things done. And so if you're able to compile this data to give to them over weeks or months, it's going to really be helpful for you. Julie Woon (26:52) Well, I think that is everything that I have for you today. Alex, thank you so much for joining us once again and for opening up and telling us about your experience with pots. We really appreciate it and it's always so great to talk with you. Alexandria Yarborough (27:08) Awesome. Thank you so much for having me. I appreciate being able to share my story.