Episode 12: POTS Diaries with Tanya from Utah Link: https://tinyurl.com/ym2znv3f

00:00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTSCast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS, this invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive but thrive. This is the Standing Up to POTS podcast.

00:00:27 Jill (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook and today we have an episode of The POTS Diaries where we get to meet a POTS patient and hear what their journey has been like. I don't know about you, but I'm always fascinated to hear from other POTS patients because we're all so different, yet have so much in common at the same time. So today we are speaking with Tanya. Tanya, thank you so much for joining us today.

00:00:55 Tanya: You're welcome.

00:00:57 Jill (Standing Up to POTS): So if we could, let's just start with some basics about you. What is your age? Where do you live? What do you do?

00:01:05 Tanya: So I am 46 and I am live in Kaysville, Utah and what do I do? I don't do much anymore. But do you want me to tell you what my life was like before I got sick?

00:01:24 Jill (Standing Up to POTS): I totally do. In fact, I was going to ask you to maybe give us like the three minute snapshots of what your life looks like before you got sick, how you were spending your time, what types of work or hobbies, or general activities you were doing. Just yeah, whatever your life looked like.

00:01:41 Tanya: So before I got sick, my journey is about just over a year and so over, just over a year ago, I was very active. I was very healthy. I hardly ever went to the doctor. I've never had bad cholesterol or I've never had problems with blood pressure, just always healthy. I, like I said I was very active and considered myself a cyclist. I had ridden my bike in five century rides in the past several years, so that's what I did to keep healthy and exercise. I love to ride my bike. I'm a gardener so I have quite a yard and garden with flowers and that's my meditation was to go out and get my hands dirty and work in the dirt and work in my yard. That was something I always loved. I owned a photography business, so I had a photography business. I specialized in newborn babies and had that for 20 years. So that was up and going and was the perfect job. I was able to do it part-time and so I could be as busy as I wanted to with that, had three kids, and I had a calling in my church that I worked with the youth, and so that kept me very busy. We had just purchased horses about - I got a new horse four months before I got sick. So, we were hoping to become horse people and add that to our hobbies. I was really looking forward to having a horse and going on rides and stuff like that, so I hope I painted a good picture. I was very active. I never stopped.

00:03:33 Jill (Standing Up to POTS): Yeah, it sounds like an absolutely beautiful life. Can I ask about your personality? Like what are a few words that your family or friends might use, and I'm talking about before you got sick, like how would people describe you? Tanya is so...

00:03:52 Tanya: The first word that comes to my mind is over the top. I think whenever I was asked to, like I was asked to throw a Christmas party for my church a couple years ago, and I couldn't just do a simple Christmas party. I had to have it themed and we had to do the decorations and I had a committee and just it was over the top. So yeah, I think my friends roll their eyes and say I can't just do anything simple. I have to go the extreme and go over the top.

00:04:28 Jill (Standing Up to POTS): That sounds fun. What was the first sign that something was wrong with your health?

00:04:36 Tanya: I got COVID in April 2020, so that's when everything went downhill for me is when I got sick.

00:04:43 Jill (Standing Up to POTS): And was your COVID very severe?

00:04:47 Tanya: It wasn't bad enough - I never felt like I had to go to the hospital, so it was just like a bad flu. It was in my chest and I, you know, I went into quarantine for two weeks and just rested in bed and had a humidifier. I had an inhaler that I used to use for when I did my bike rides. So I went and got my inhaler out of my bike little purse and so I would use that, but I was pretty fatigued, which, you know, is expected when you get sick, so I just thought, you know, I tested negative for COVID. So I just thought, well, we have a bug and I'll get over it in two weeks and be fine.

00:05:31 Jill (Standing Up to POTS): And what happened instead?

00:05:35 Tanya: Oh, instead... sorry if I get emotional. It's still so new. So I came out of quarantine at two weeks after my first symptom and I actually started to get better and I think I went three days. The shortness of breath and the fatigue really lifted and I was able to move around a little bit more and I was able to breathe a little bit more. I think it went like three or four days after I came out of quarantine thinking, “Oh, I'm getting better,” and then I remember just bam the next day I was back in bed with severe fatigue and the shortness of breath, and I had dizziness and I started getting a really bad cough, I remember after that. And so that's how May 2020 went is I would go three or four days, I'm starting to get better. I go start working out in my yard and then bam, three days I'd be back in bed with all my symptoms flared again. So it was a roller coaster that was just the weirdest thing I've ever been through. And then probably the end of May, 1st of June, it hit me and I never got better. The good days went away.

00:06:52 Jill (Standing Up to POTS): So then how long did it take you to get diagnosed with POTS or dysautonomia? And was that difficult?

00:07:00 Tanya: You know I actually, after hearing other people's stories before COVID, I think that I was pretty lucky. I had gone to a lot of doctors that summer. My family practitioner was referring me to a pulmonologist, cardiologist. Just we kept going to different doctors trying to figure out what was wrong with me. I was bedridden back then and anyone that knows POTS knows just how awful the symptoms were. I was dizzy, shortness of breath, heart palpitations, I had tremors, just, it just felt awful, couldn't get out of bed. I actually found in the news they were talking about long haulers. And remember, I said I tested negative for COVID, and I started reading these COVID long haulers stories and they have the exact same symptoms I had. So I joined some groups on Facebook and lo and behold, I had every single symptom that they were having. So I started reading. I would sit in bed all day and I would just read what people were talking about and writing about and the word POTS kept coming up and people were talking about POTS. And I remember reading a lady posted a blog article or something and she was a longhauler and she had POTS. She talked about how she did the poor man's tilt table test at home and was trying to look at her heart rate and see if it went up when she stood and I actually joined at that time, I think it was July, I joined a webinar that dysautonomia hosted and it talked about POTS. And so I made my husband listen to it with me and I had every symptom that they talked about. So at that same time I was going to see a cardiologist. And when I went to meet with the cardiologist, I think it was August 3rd, I remember I was looking forward to that appointment and I was so excited and I went and told him my symptoms and said, could I have this POTS that, you know, these people are talking about? And he says, “Yeah, you fit the bill. You look like you have the symptoms.” He says, “Let's put you on a medication and see if it helps you.” So he put me on midodrine and sure enough I was able to get out of bed. I was able to start moving around. My symptoms were still there, but they weren't as extreme, and I just remembered telling his nurse, if I could just come in and give him a big hug. He saved my life. Whatever this midodrine is, it's helping. And so he said, “Yeah, you have POTS. If you're responding to midodrine, you have POTS.” The sad part of it is he says, “I don't know very much about POTS, so I can't really help you with that.” So he referred me to the University of Utah. They had a dysautonomia clinic up there and so I called them and they had a 10 month waiting list. And, you know, anyone with POTS knows you're just suffering and I said, “I am not waiting ten months to get into somewhere and I need help now.” So I called the Mayo Clinic in Minnesota and applied for them with them and it took about 3, maybe 4 weeks, and they got back to me and approved to see me. So the first week of November I flew to Minnesota and went to their autonomic department and was tested and was diagnosed with hyperadrenergic POTS.

00:10:46 Jill (Standing Up to POTS): And since you got these diagnoses, have you been able to find more things that help, or has it pretty much been flat since the midodrine discovery?

00:10:59 Tanya: No, I am so much better now. It's funny, I think back you sometimes forget how bad it was. But I remember I have little snippets of memories. I remember laying in my bed and the dog would bark in the summertime and I would have a mini panic attack. Just being startled. I remember my phone would do that, too. My phone would chime, and all of a sudden my heart would start pounding and I’d get shortness of breath and get dizzy just from my phone chiming, startling me. And I don't get that any more. So I think about how bad I was last summer and I'm so much better now. Do you want me to tell you the things I'm doing or is that... am I jumping ahead?

00:11:48 Jill (Standing Up to POTS): No, if you have things that have helped you, I bet everybody is curious to hear what they are.

00:11:53 Tanya: So the midodrine, you know, we all know that medication - different medications help different people, but you say “mi-do-drine", other places say “my-do-drine". But that there's something about that vaso constrictor that squeezes the blood vessels and gets that blood pumping back up to my upper body that sure helps me. I don't know if it has to do with because I'm hyperadrenergic that my body just wigs out and dumps adrenaline when I don't have blood up there. And that's where I suffer the most, but that really helps. I remember learning about compression - wearing compression socks and thigh highs and abdominal binders, and I tried buying the socks in the beginning and couldn't tell a difference with them. I remember putting on – my daughter just recently got married last year and we got her corsets and abdominally binders to suck her in for her wedding dress. So I remember getting that out and putting it on, and very uncomfortable. You can't breathe, you can't, you know you can't do anything, but I just suffered through it for a day and when I took it off that night, it reminded me of when I was little and you play on the monkey bars on their playground at school and when you hang upside down, you get a head rush. Well, that's what I got was I had rush when I took the abdominal binder off. And it was crazy, so I thought, well, that must be working 'cause I could feel it when I take it off. So I have not been without an abdominal binder since then. That, that has sure helped me a lot. I have noticed it's hard to tell with the salt and electrolytes, but when I go off of them I can tell a big difference. So having my salt every day, I take 2 teaspoons of salt and I actually I use the pink Himalayan salt and I measure it out in a little cup every morning. I heard this trick somewhere and I thought this was pretty nifty. I measure 2 teaspoons of salt out in a little cup each morning, and I actually drink my salt, so I put it in with my electrolytes. One lady said she used the sugar free pure crystal light and she would drink her salt with that, so it really wasn't that bad. I thought I would have to gag it down, but by now I'm used to it so that works for me. I tried putting it on my food, but I just - it ruined my food and I just wasn't eating enough food to put 2 teaspoons of salt on it in a day so that works for me. And then I drink Liquid IVs. I have two or three a day. I drink about four 32 ounce mugs of liquids every day, so I think I do really well. When I was at the Mayo Clinic, the doctor says the amount of fluid and electrolytes and salt is awesome because he did some tests and urine test and he's like, “You're where you should be.” It's great. So, I do that everyday and small small meals throughout the day, I think helps. every once in awhile you'll go out - I can't go out to eat, but we get take out - and I'll get a really good meal and I'll eat it all and just feel like crap afterwards. So I try to keep the meals to be smaller, 'cause I've heard that the blood will all go to your guts to digest that large meal. And we all know that we have low blood volumes so that blood’s precious.

00:15:39 Jill (Standing Up to POTS): And that's a good way to think about it. I like that. So, what symptoms do you still have left that are debilitating, if any?

00:15:48 Tanya: It's hard because I also was diagnosed with mast cell activation syndrome and then a few months ago I was diagnosed with ME/CFS which is chronic fatigue syndrome, and so I'm trying to wrap my head around what symptom goes with what illness. And so what I used to think were adrenaline dumps from my POTS, I think were actually histamine dumps. Because I would get him after eating food. And so I think my biggest symptom that I absolutely hate is tremors and I think that goes in the POTS category with my autonomic nervous system being messed up. And so, I'm on mestinon. I just started mestinon about probably 5-6 weeks ago and that has helped with my tremors. So I used to, if I used to do a chore and I did a chore for too long, my hands would start to shake. My body would start to shake a little bit and so I hated that. I hated the tremors. When I used to wake up first thing in the morning, or if I woke up in the middle the night, my chest cavity would shake, and that was tremors. And so probably since I started the mestinon I hardly ever get the tremors anymore. So that's been a blessing. So the worst symptom I think my POTS gives me as tremors. Dizziness is probably a big one. Shortness of breath. I hate the shortness of breath, not it's just an air hunger that's not bad enough that I feel like I need to hurry and do an inhaler, but I just some sometimes just talking right now. It's like I can't catch my breath. I can't talk and breathe at the same time. That's too much.

00:17:44 Jill (Standing Up to POTS): I get that yeah, so how affected is your work, your social life, your family life, your sleep? Is it anything like it was before? Or is it pretty different now?

00:17:59 Tanya: That's pretty different. I'm a whole different person. So I had to give up the photography, so I can't work anymore. I can stand. I've been working with - I've got a great great, great, ME/CFS doctor and she also does POTS. Most people with ME/CFS have orthostatic intolerance, so a lot of people with ME/CFS have POTS. So she has been great and we've been talking a lot and I'm trying to figure out, I could probably - I can probably stand and move around for four hours a day. So if you really think about four hours a day, that is not much at all, and that's a good day. So I'm homebound. I thank goodness for the grocery stores and the takeout where they let you order the groceries on an app and go pick it up now 'cause that is heaven sense. That's the one good thing about getting sick during the pandemic is everyone else has been staying home too, so I can do doctor visits by Zoom now. I don't have to go to the doctor's office and so I just - I'm homebound. I do go to the doctors' offices when I can. But my biggest fear is having to stand. So, I won't, I won't go shopping, I won't go to the grocery store just that fear of having to stand in line. I just can't do it. I become too weak and start getting dizzy and my legs just want to give out so that's my life is I'm homebound, but it works. I have a great family. I have a beautiful home to be homebound in and my family has been great to understand what I'm going through and, you know, they're sacrificing too 'cause they can't go out to eat like we used to. Or go do activities 'cause mom can't go do it. But we're getting by. We're figuring this out.

00:20:03 Jill (Standing Up to POTS): Yeah, I can sense that you have a lot of strength for everything that you've been through and that you're still fighting for. What gives you strength to deal with all this? What's helping you cope?

00:20:15 Tanya: Oh wow, that's a good question. I've had some dark days. It's a roller coaster. Every single doctor I go to, “Are you depressed? Do you need antidepressant pills?” You know? And I have dealt with depression before my life, and I'm not depressed. But I have days that I just cry all day. You know, the pity parties. And it's OK to mourn your old life, but the next day I have to pick myself back up. And I can’t let myself go there and I pick myself up. And I try harder the next day. And I actually started seeing a therapist for someone to talk to and he has been great. And one thing that I took away from him, for someone that is a go go go person that never stops - my previous life - it's hard to adjust to this slow life, and the things that I'm learning. I'm learning to take little walks, even if it's just in my yard, and to be mindful of the beauty around me. And I never did that before. And that's there's something almost spiritual about that. To be able to slow down and enjoy the beauty around us, and almost to just slow down and have those talks. My kids are teenagers and I was always so busy running. I never just stopped and talked to them and now just laying in my bed and scratching their back and having a conversation with them. I would have never done that before, so I'm appreciating the slow life now and I'm being mindful of and appreciative of the things around me that I was too busy to appreciate before.

00:22:26 Jill (Standing Up to POTS): What a good attitude. What would be the best help that you could get from people at this point?

00:22:34 Tanya: I think the best thing people could do to help me would be to understand. You know, you have friends and family that will ask about you and those that are truly interested that want to learn, what is pots? What is it doing to my body? Those that actually want to understand and can understand it and sympathize with me and the ones that don't want to take the time and to understand that that kind of hurts. But you know, people want to help me. And there's not much you can do, especially in a pandemic, you really don't want to take someone dinner. And so I think just for my friends to understand and even just getting a text, “how are you feeling?” means the world to me. Just - it's a lonely journey. It's very lonely. And especially when the doctors don't understand. And your family, they do everything they can to help you, but it's lonely. So just getting a friendly phone call or text means the world.

00:23:48 Jill (Standing Up to POTS): You know, I so relate to that, and I remember times when I was kind of near rock bottom where I was so lonely that I could feel it as a physical difference in my body and I could feel that on the rare occasions that I would go out, I remember having this feeling of someone just opening a door for me, like at a store or something, and that was like more kindness than I had felt like I had had in a while that I was like so touched. I almost cried that someone opened a door for me and I was like, “wow, I am really lonely right now, apparently.” But I so relate to that. And that is one of our goals with sharing people stories on this podcast. And so if there's anybody else out there right now feeling lonely, I hope, I don't know, I almost just want to give a big group hug to anybody who chooses to be part of it because it's so hard that POTS is not rare, and yet it's so hard to meet another POTS patient face to face, maybe because it's invisible and we don't even recognize it in each other. Or maybe because a lot of us are stuck at home. But I just can't thank you enough for being vulnerable and sharing that 'cause I- that's the kind of thing where I feel, “Oh, I'm not alone. I'm not the only one.” It's just so nice of you to be brave enough to kind of share that kind of thing.

00:25:28 Tanya: Thank you.

00:25:29 Jill (Standing Up to POTS): OK, so we have created a little section of questions that are meant to be a little bit more light, maybe even fun. A little bit of a speed round where you can just say the first thing that comes to your mind. And I recognize the irony of having a speed round for a POTSy brain that may not be getting enough blood flow. So brain fog, word finding, difficulty, concentration problems, these are all expected and part of the fun, hopefully. Does that sound OK?

00:26:07 Tanya: Yep, I'll do it.

00:26:10 Jill (Standing Up to POTS): OK. What is your favorite way to get salt?

00:26:13 Tanya: Oh, drinking it.

00:26:14 Jill (Standing Up to POTS): What is your favorite hydrating drink?

00:26:18 Tanya: Liquid IV

00:26:19 Jill (Standing Up to POTS): How many doctors have you seen for POTS or related illnesses?

00:26:24 Tanya: Oh, in the past year trying to figure out what's wrong with me. Let's say 50 - 50 in the last year.

00:26:34 Jill (Standing Up to POTS): I'm tempted to ask you how much money you've spent on POTS doctors, but I don't think that would be appropriate. How many other POTS patients have you ever met face to face in the flesh?

00:26:49 Tanya: 3

00:26:51 Jill (Standing Up to POTS): What is one word that describes what it's like living with POTS?

00:26:59 Tanya: Prison.

00:27:00 Jill (Standing Up to POTS): What is something small that brings you comfort or joy?

00:27:06 Tanya: My phone.

00:27:08 Jill (Standing Up to POTS): If you could choose to have one superpower, what would it be?

00:27:14 Tanya: It's on the tip of my tongue, but I don't know how to say it. It's - to be like martial arts kickboxing that I could fight ten men at one time. You know, like a superhero, like Black Widow. If I could just have that superhuman body and fight anyone that I wanted to.

00:27:40 Jill (Standing Up to POTS): Something you would give to every POTS patient if you were Oprah and had infinite funds.

00:27:47 Tanya: An abdominal binder.

00:27:50 Jill (Standing Up to POTS): Girdles for everybody. People might suspect you’re a POTSie when...

00:27:59 Tanya: I can't stand up.

00:28:02 Jill (Standing Up to POTS): And something you are grateful for.

00:28:05 Tanya: Oh, I've found a wonderful doctor that I absolutely adore and she has just made my life so much easier. I love my new doctor.

00:28:16 Jill (Standing Up to POTS): Oh, hurray for that. OK, well that concludes our speed round. Thank you so much and thank you, brain. So as we start to wrap up is there anything that you wish more people knew about Potts?

00:28:34 Tanya: I wouldn't even say people, I would say physicians and clinicians. I wish more clinicians and physicians, doctors, the whole medical world. I wish they knew more about POTS. You know, I've had doctors tell me that it's just anxiety and to go home and take a bunch of Xanax and Zoloft. Yeah, one doctor told me that. So, and I hear stories of other people with POTS that go through so much, they can't get a diagnosis. So that's my biggest wish. If I could wish, I would wish the medical field had a better understanding of dysautonomia.

00:29:13 Jill (Standing Up to POTS): Do you have any final messages, tips, advice, or wisdom you'd want to share with anyone going through this?

00:29:23 Tanya: My tip and advice would be don't give up. I've actually made a lot of friends that are longhaulers that have also been diagnosed with POTS and in Utah I’ve become the POTS expert just 'cause I guess I was one of the first to get the diagnosis. But everyone that suspected it would reach out to me on Facebook and just, “Help! Something’s majorly wrong with my body and I'm miserable and don't know what to do.” I think we, at that that point, we're so sick and it's easy just to lay in bed and give up. My advice would be don't give up and keep searching for the right doctor to help you and go with your instinct. If the doctor tells you something that doesn't make sense, go to a new doctor. And if you have a doctor that says he knows POTS but he's not helping you, go to a new doctor. Just keep finding going through doctors until you find the right fit. A good doctor that is knowledgeable and that can help you. And that's a process and it's a journey. And I would say the other thing is to learn all that you can about POTS and dysautonomia. I would just sit and put my ear plugs in and listen to the dysautonomia conferences international Dysautonomia international, their videos and conferences, and I would learn all that I could and I would try to read as many books and read people comments on Facebook. Because you're your own advocate, you're it.

00:31:03 Jill (Standing Up to POTS): Oh, I think that's such smart advice. OK, my last question is why did you choose to share your story today?

00:31:10 Tanya: The reason I chose to share my story was when I was first diagnosed with POTS, I wanted to talk to every single person out there that had POTS. “What is your life like? You know, what medication works for you?” I had one lady, well, we have a dysautonomia international Utah Facebook group and I put on there, “I was just diagnosed with POTS. What advice would you give me just starting?” And there was a lady that reached out to me and she said, give me your email address and I'll send you some information and she was my lifeline. I would send her emails in the beginning and ask her questions and you know, “what are beta blockers?” and you know just one question was, “is there a cure? Am I going to have this the rest of my life?” And she was so great and she actually was in a really good place. She had been in a bad place before with her POTS. But she was managing her POTS really well. I remember she told me she was going skiing twice a week and I was like, “What? You have POTS and you can go skiing?” So even though there was no cure to it, I looked at her and I looked at her life and she was living a prosperous, productive, fun life with POTS, and that was my inspiration and so I wanted to share my story because I know a lot of people starting out want to hear everything they can. “What are you doing? What's working? What's your journey like?” You know and to be able to relate, we talked about being lonely, and to be able to hear someone else suffering or going through the same thing, you don't feel as lonely. So I hope sharing my story that I could help someone with one of my suggestions, or if I could just help someone that maybe feels really alone right now that they're not alone, that we're all going through the same thing.

00:33:17 Jill (Standing Up to POTS): Amen, that is so beautifully said and thank you for having the generosity to try to make your suffering mean something to help other people. I know you're such a fighter, you're doing everything you can to try to improve and I hope that all your hard work pays off. And I can't thank you enough for taking this time with us today and for being so open and honest and frank about your story. I know it's not easy to relive, and I think that it was really helpful though, for helping to raise awareness and hopefully to help somebody else out there. So OK. Listeners as always, remember this is not meant as medical advice. Consult your medical team about what's right for you, 'cause we're all different, but thank you for listening. Remember, you're not alone. And please join us again soon.

00:34:04 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. For a copy of this transcript, or a transcript of any other POTScast episode, please email volunteer@standinguptopots.org © 2021 Standing Up to POTS. All rights reserved.