POTS Diary with Hannah from South Carolina, who developed POTS after a traumatic brain injury

POTS Diaries with Hannah [00:00:00] Jill Brook: Hello, fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries. Today we are speaking with Hannah. Thank you so much for joining us today, Hannah. [00:00:14] Hannah: Thank you so much for having me. I'm so excited. [00:00:17] Jill Brook: So let's start with the easy stuff. How old are you and where are you? [00:00:21] Hannah: I am 23 years old. And I live in South Carolina. I grew up in South Carolina, if you can't tell by the accent yet. But yeah, that's a little bit about me. [00:00:32] Jill Brook: So what is your hometown and what is it known for? [00:00:35] Hannah: I live in Camden, South Carolina and we are the equestrian capital of the world. So we have horse races and big, big horse fans here. [00:00:45] Jill Brook: Oh, very cool. Okay, so how would your friends or family describe your personality? [00:00:51] Hannah: I think they would describe me as pretty outgoing and pretty self-aware. That's one of the big things about me is I can pretty much read a room and kind of know what to expect from people. [00:01:04] Jill Brook: That sounds like a really great skill. Tell us what you're passionate about or what you enjoy doing. [00:01:10] Hannah: Yeah, so I work in the hospitality industry, so really just being around people. I've worked as a wedding coordinator, an event coordinator. I've worked in different restaurants and stuff like that. So really just being around people, serving them and just seeing a smile on their face is really what drives me. [00:01:33] Jill Brook: Oh, that's so neat. Okay, so what's the coolest wedding thing you've ever seen? [00:01:39] Hannah: Oh goodness. It was last summer, I worked at a wedding coordinating event barn in Greenville, South Carolina. And they had this one wedding, it was under a beautiful oak tree. And they had these doors. they were some kind of special like church doors that was in their family and so they brought them there and I got to like walk the bride up there and hold her dress before she walked through the door. So that was really cool. [00:02:10] Jill Brook: Oh, neat. [00:02:12] Hannah: Mm-hmm. [00:02:12] Jill Brook: Okay, so next, if we were gonna make you brag about yourself, what are you good at? [00:02:19] Hannah: Oh goodness. That's hard. I would say I'm pretty good at bringing the best out of people. I look for potential in people and I like to bring it out of them and bring them out of their shell a little bit. [00:02:32] Jill Brook: Oh, that's so neat. What a cool skill. Okay, I am wondering if you can tell us about your life before POTS. If you could give us kind of a snapshot of that year and what you were doing in the year before POTS entered your life? [00:02:50] Hannah: Yeah, so the year before it entered my life I was pretty busy. I was working all the time. If I wasn't working, I was with friends. I was just really, really busy dipping my hands in all types of different things. Between my job, there's a lot that I do at my job that's different, and so I was really experimenting there. But yeah, I was just a lot busier than I am today. [00:03:19] Jill Brook: Mm-hmm. And how old were you at that time? [00:03:23] Hannah: I was, let's see, it was three years ago, so I was 20. [00:03:29] Jill Brook: Okay. Okay. So what happened then? [00:03:34] Hannah: So it was the summer of 2019. I was going to get my college shots. It was a meningitis, meningoccal shot and there's some side effects with the shot. And so I had passed out after my shot was given and I hit my head on a chair. Mind you, the table that I was sitting on was at least three feet off the concrete floor, so I fell, hit my head. I fractured my skull, sprained by neck, received a blood clot in my brain. And there was some things going on behind my eyes. Some different brain swellings and stuff like that. I thought I was gonna have to get brain surgery either that day or that week, but my brain, it didn't swell as much. But I did damage my pituitary gland, which has a lot to do with hormones and regulating your whole body, really. So that's really where I developed POTS from was after that fall. I developed, I actually developed POTS, SIADH, and dysautonomia, which they pretty much all go hand in hand. There's just different ways you have to take care of each of them. [00:04:54] Jill Brook: what is S I A D H? [00:04:57] Hannah: So SIADH it's hard to explain. It's a hormone discretion. My sodium is very low. So with most POTS patients, you recommend them drink a lot of fluids, but my body discretes my sodium through my fluid intake. So I can't drink a lot of water. I can only about 64 ounces a day, but then I also have to intake my sodium, so I'm pretty much thirsty all the time. [00:05:30] Jill Brook: Oh wow. So there's so much that you have just said. And so this part about the sodium in the water is interesting, but if we can just back up a second. Wow. So you sound like you just got so unlucky that you fainted from a shot and you just happened to, it sounds like, hit your head in the worst possible way that made all this other stuff happen? [00:05:56] Hannah: Mm-hmm. I had hit my, I don't know what you call, like your [00:06:00] Jill Brook: The temple. [00:06:02] Hannah: I hit my temple and so it caused my brain to kind of go off balance really. And cause a bunch of different things. [00:06:11] Jill Brook: And so this was technically a traumatic brain injury, is that what it's called? [00:06:16] Hannah: Yes. [00:06:17] Jill Brook: And. Wow. So you got the brain swelling and then it also affected your pituitary gland. Can you talk a little bit more about that? [00:06:27] Hannah: Yeah. So the pituitary gland it's really the powerhouse of all your hormones. It tells your body how to read each hormone, really how to react to different things. And so with that being damaged, it really throws your whole body out of whack. And it did heal itself. Luckily, it miracally healed itself, but it's still going to have lasting effects because it was damaged. [00:06:59] Jill Brook: So this was three years ago now. [00:07:01] Hannah: Mm-hmm. [00:07:02] Jill Brook: Wow. So, you mentioned you also had a blood clot from this. [00:07:09] Hannah: Yeah. [00:07:09] Jill Brook: Can you talk about that? [00:07:11] Hannah: mm-hmm. . So there was a blood clot in my brain when all of it happened. And so when that happened, I developed SIADH in POTS from the brain injury at the time, but when the blood clot was in my brain, I was recommended to take more fluids. With me taking more fluids that was making my sodium drop. So I was really in and out of consciousness because they didn't, they didn't know how to diagnose me yet. They didn't really know what was going on at that point. So really I was in the hospital for 12 days, So with that, it just caused a lot of complications, but they figured it out and was able to diagnose me. Luckily. [00:07:55] Jill Brook: Wow, so 12 days and it sounds like things were really, really serious there. Yeah. With you said you had fracture. [00:08:05] Hannah: Yes, ma'am. I was in and out of the ICU. The fracture healed itself too. That took about four months to heal and everything in my brain healed itself and it was a miracle. [00:08:19] Jill Brook: Wow. Did you have to work hard to help it heal? [00:08:22] Hannah: no, they kept me on blood thinners and a little different medications. I was taking potassium. all different types of supplements, really just to kind of get my brain back on track. [00:08:36] Jill Brook: Other than the Dysautonomia and the SIADH, do you have other lasting effects from this injury? [00:08:45] Hannah: I have in my brain a I can't remember the technical term, but it's a cyst in my brain. From my last MRI that I took it showed that I had a cyst on my brain and my neurologist said, it's not a harmful cyst at this point, so we're just gonna keep an eye on it. But it could develop into a tumor or something else. But as of right now, it's not really doing anything. [00:09:12] Jill Brook: Wow, you seem so I guess calm about all of this, and I'm sure that you've had just an incredible emotional rollercoaster, but can I just ask how you feel about all this? [00:09:26] Hannah: All of it happening and being so lucky and just the blessing that my community has been to me throughout the whole process really. I've just realized how blessed I am and that I was healed because there's some people that could come out of this and it could have had a long effect on them. But I've just miraculously come out of it, so I just had to thank the Lord every day for it. [00:09:52] Jill Brook: That's a great attitude. Can you talk more about your community? You said that they had shown you some. [00:09:59] Hannah: Yeah, like I said, we live in a very small town. So everyone was just, once I was coherent and could get on like social media and I just saw the outpouring of love that everyone was giving us. It was amazing. And there were people, like my grandmother was selling sunflowers for me at the farmer's market, and everyone was supporting that. And it was just, it was my church community, all of it. Everyone was just so loving in that time. [00:10:29] Jill Brook: Oh, that's wonderful. Okay. Wow. So can I ask, what are the symptoms that you deal with now still from your POTS or your SIADH or Dysautonomia or anything else? [00:10:43] Hannah: I can pretty much feel when my sodium is low. I can really tell, okay, I need to, I have a standing order to get my labs done. I need to go get my labs done and figure out if this is my sodium or if it's another hormone or something like that. So I can really tell when my sodium is off. But with that, I can just have days of where I'm just really tired. And just weak really. That's, that's the biggest thing is I can get really weak. And then some symptoms obviously like heart palpitations and different things like that. And I can have little mini episodes of where my heart feels like it's skipped a beat almost. And so I just have to put my legs up and sit down and kind of calm down. But if that happens, say in the morning, I'm pretty much. I'm gonna be very tired for the rest of the day. So I've had to kind of figure out how to navigate through that part of it. [00:11:46] Jill Brook: So the SIADH sounds like the worst possible thing to have if you also have POTS, so you're saying, you have the normal POTS, so presumably your brain doesn't get enough circulation and maybe you have some blood pooling or maybe some hypovolemia, and whereas most people would just go hard on the sodium and the fluids, you're limited to did you say only 64 ounces of water per day? [00:12:11] Hannah: Mm-hmm. My endocrinologist doesn't really recommend me drink that much. But yeah, I've kind of figured out that that is pretty much my limit. And I'll put like a Propel packet in it just to make sure that I have some extra hydration. And I'm on salt tablets too, so just, I just kind of watch what I eat and drink and stuff. [00:12:32] Jill Brook: So you said that you're always thirsty. That's rough! What do you do? [00:12:38] Hannah: I know it's because when you think about what SIADH is, you shouldn't be thirsty because your body is, it's hard to explain. You shouldn't be thirsty. and then when you think of POTS and having low sodium, you still would think, I shouldn't be thirsty because I don't have that much salt in me, but I am, I'm very thirsty all the time. I haven't talked to anyone with POTS that has that same scenario, but that's how it's been for me. [00:13:08] Jill Brook: Wow. Because I know that, you know, some POTS patients also have Sjogren's syndrome, which can be a common comorbidity, which means like dry eyes, dry mouth, and. For those of us who have that, though, we can just drink and drink and drink and it kind of works with the POTS. And there are times I know that when I have felt like my mouth was just so parched, and when you drink, it just feels amazing, right? It feels like you just crossed a desert and you just reached that oasis. And it pains me that you never get that feeling. Do you meter out your 64 ounces carefully and take little sips throughout the day, or do you , do anything special? [00:13:52] Hannah: yeah, I don't monitor it exactly like I should. At night is when I'm very thirsty, so I pretty much will kind of save it up until night. So I, yeah, I kind of keep myself aware of what I'm drinking throughout the day. [00:14:07] Jill Brook: You know, that brings up something that I think about sometimes with some of these weird things that we have to do with chronic illness, which is can you believe that you're using your willpower to avoid water? [00:14:18] Hannah: I know. I know. It's crazy. And they tell you, go eat Bojangles, or go eat a bag of chips, or go eat fries. And it's like everybody else, you tell them to not eat that. But when you need it, you need it. [00:14:33] Jill Brook: Yeah. So do you think that this whole experience has changed you as a person? [00:14:39] Hannah: Yes, most definitely. [00:14:41] Jill Brook: anything specific that comes to mind? [00:14:44] Hannah: I'm more aware of myself. I've been able to, in the past to kind of deny how I'm feeling or if I'm, if I'm feeling sick, I'll suck it up. But now I'm like, if I do that, It'll have a longer effect on me. So I need to take care of the situation now. And that has taken honestly, years and months to learn how to do. But definitely in other ways. With my brain injury, it's affected my personality in different ways. But just learning how to kind of deal with POTS. Figure out what works for me really has changed the way I think about food, the way I see people, the way I see chronic illnesses, all of that. [00:15:36] Jill Brook: So can you talk more about any of that? I was interested that you said your personality maybe changed with your traumatic brain injury? [00:15:45] Hannah: Mm-hmm. It's hard to pinpoint exactly what's changed, but people that know me will say that. Yeah, she's definitely changed. I'm more strict with myself. I used to be more go with the flow or any stuff like that. But now I'm pretty, pretty strict with myself and what I allow myself to do. But most of it, I mean, it's not a bad thing. I can't look at it as it's a bad thing because I have been able to restrict myself from some things that are good and it's really affected that part of me. But a lot of it has been for the better. It has really bettered me. If you knew me before my accident, you'd be like, oh my goodness, that girl needs a checkup. But now I've kinda learned a lot more about life and about the body and I just don't take life for granted like I used to. [00:16:36] Jill Brook: Wow, that's so mature and beautiful. [00:16:40] Hannah: Thank you. [00:16:41] Jill Brook: What do you miss most about life before this injury? [00:16:45] Hannah: being able to eat chocolate and not feeling like I'm gonna pass out. And being able to eat whatever I want. That I know it's not that big, but it really is. [00:16:56] Jill Brook: What is the best support that people can give you nowadays? [00:17:02] Hannah: When it comes to POTS, just understand. If you don't have it, you're not gonna understand. And just having grace for people that either they need a day off or they just need a minute. Just having grace for people that are either have POTS or chronic illness, whatever it may be just having grace for those people. [00:17:21] Jill Brook: So you seem like you have a ton of grace for what you have been through. Did you always, or did you go through a period where you were very angry or very anxious or anything? Or were you just naturally this calm about everything? [00:17:35] Hannah: I wasn't ever really angry. I will say that I got my life care plan from my lawyer about what it is my future looks like. And it made me more sad than anything because I didn't know it was a life care plan that explained everything that happened in the hospital. My mom had kind of kept that from me for my own good. She kept that from me. And so I read that for the first time and then it was a little bit discouraging. But I didn't let it sit with me. It's just something that happened. [00:18:10] Jill Brook: Can you explain, for those of us who don't know what a life care plan is, what that is, and then you also mentioned a lawyer, so maybe you [00:18:17] Hannah: Oh yeah, [00:18:18] Jill Brook: about that part of the story. [00:18:20] Hannah: So the shot that I had been given before passing out, there is a vaccine act on it. And because people do pass out from it, so I'm not the only one. So there have been people that have been in my shoes. So we are going after the Vaccine Act to kind of cover the compensation of what my mom had to pay my pain and suffering and all of that. So my life care plan is basically what my future looks like when it comes to MRIs and medications. Just future stuff like that. So my life care plan explained what had happened and what my future looks like. [00:18:59] Jill Brook: So basically it says you have this much medical care that you're gonna keep needing for the rest of your life, and so the hope is that your lawyer can get that paid for. [00:19:11] Hannah: yes. [00:19:13] Jill Brook: Okay. Can I ask, what medical care do you have to get for the rest of your life because of this? [00:19:20] Hannah: I have to get MRIs every six months. CT scans every six months. I'm on different medications for the rest of my life and different hormone panels for my blood getting drawn. And if I have decide to have a baby, what that'll look like with frequent checkups to my endocrinologist. Every three weeks I think she said. So different checkups and medications and stuff. [00:19:47] Jill Brook: Okay. So that sounds like kind of a lot. [00:19:49] Hannah: Mm-hmm. [00:19:50] Jill Brook: Yeah. So. I guess when I think of all that you've been through and how wise you seem about all of it, is there anything that you wish you had known sooner about living with POTS and traumatic brain injury and SIADH? [00:20:07] Hannah: Yeah. I wish I had taken it a little bit more serious than I did. When it first happened and I was talking to my different doctors, they really couldn't diagnose me with anything because I was like, oh, I'm doing great. I'm fine. Like I'm not really struggling when really I was. So, I wish that I had taken it a little bit more serious because it maybe had sped up my diagnosis. [00:20:31] Jill Brook: Yeah. So sometimes people with traumatic brain injuries are left with difficulty like concentrating or with cognitive things. Did you have any of that hit you along with it? [00:20:47] Hannah: yes. That was difficulty concentrating. Really, and motivation really is one. So staying motivated and staying with something really changed about me because I used to be, if I say I'm gonna do it, I'm gonna do it, I'm there for it. But now, I have to keep myself motivated and I have to actually be more determined. I have to set that in my path. But it used to come nationally for me, but now it's just it is hard to stay focused on different things and tasks. [00:21:22] Jill Brook: Mm-hmm. is, so, is that something that you are kind of just developing skills and hacks for? [00:21:29] Hannah: Mm-hmm. most definitely. [00:21:31] Jill Brook: Yeah. Wow. So would your brain be up for a speed round where we ask you to just say the first thing that comes to mind? [00:21:39] Hannah: Yeah, I can try. [00:21:41] Jill Brook: Okay. What is your favorite way to get salt? [00:21:45] Hannah: Chips. [00:21:47] Jill Brook: What is the drink that you find the most hydrating? [00:21:51] Hannah: Pedialyte. [00:21:52] Jill Brook: What is your favorite time of the day and why? [00:21:56] Hannah: the Sunset, and because it's just so pretty. [00:22:00] Jill Brook: Where is your favorite place to spend time and why? [00:22:04] Hannah: On the beach because I can just lay there all day and not have to move. [00:22:08] Jill Brook: how many doctors did you have to see for your POTS and all the related TBI stuff? [00:22:14] Hannah: just one. [00:22:15] Jill Brook: How many other POTS patients have you ever met face-to-face? [00:22:20] Hannah: three. [00:22:21] Jill Brook: What is one word that describes what it's like living with a chronic illness? [00:22:26] Hannah: Discouraging. [00:22:28] Jill Brook: What is some good advice that anyone ever gave you about anything? [00:22:32] Hannah: If you can't change the situation, change your attitude about it. [00:22:36] Jill Brook: Yeah. What is something small or inexpensive that brings you comfort or joy? [00:22:42] Hannah: A Starbucks coffee. [00:22:44] Jill Brook: Who is someone you admire? [00:22:46] Hannah: My preacher's wife. [00:22:48] Jill Brook: Do you wanna say why? [00:22:50] Hannah: She is just so wise and she's just such a big mentor in my life and she doesn't even know it, but she is. [00:22:58] Jill Brook: Oh, nice. What is something that you're proud of? [00:23:02] Hannah: How far I've come when it comes to standing up for myself and speaking out what I feel [00:23:11] Jill Brook: Excellent. What's an activity you can enjoy even when you're feeling really potsy? [00:23:17] Hannah: reading. [00:23:18] Jill Brook: Do you have anything that helps you fall asleep? [00:23:21] Hannah: Reading or I'll take melatonin. [00:23:25] Jill Brook: do you have anything that helps give you energy when you need it? [00:23:28] Hannah: Kombucha. [00:23:30] Jill Brook: What is a gift that you would have sent to every POTS patient in the entire planet if you had infinite funds? [00:23:37] Hannah: Pedialyte packets. [00:23:39] Jill Brook: What is something you're grateful? [00:23:41] Hannah: I am grateful for my health and that my POTS are not as severe as most people's and that I have figured out ways to manage them. [00:23:53] Jill Brook: Okay. Can you finish these sentences? I love it when... [00:23:58] Hannah: my dog comes to play with me. [00:24:01] Jill Brook: Nice. I hate it when... [00:24:04] Hannah: my husband sits on his phone. [00:24:06] Jill Brook: people might suspect I'm a potsy when... [00:24:09] Hannah: I'm working out and then have to lay down and put my feet up in the gym. [00:24:14] Jill Brook: Mm-hmm. . Okay. Next question is sort of related. So have you ever had to sit down or lie down in a weird place because of POTS, and if so, where was it? Besides the gym? [00:24:25] Hannah: So one is the gym. Another I was at a really fancy restaurant and I ate way too fast, and my heart was like, you shouldn't have done that. So I, I was like, I have to put my feet up. I have to put my feet up somehow. And so I like slouched in the chair and all these people are staring at me. All these white tablecloths everywhere. And so I put my feet up in a really fancy restaurant. [00:24:49] Jill Brook: I've had to do that in some weird places too, and I always think like it's easier to get away with it when you're young. And I always wonder like, what am I gonna do when I'm 80? But maybe you can get away with it when you're 80 too. I don't know. [00:25:02] Hannah: Yeah. [00:25:03] Jill Brook: Okay, I just have a couple more questions. What do you wish more people knew about POTS or Traumatic Brain Injury? [00:25:10] Hannah: That it is pretty serious and that we actually are feeling bad. We can kind of feel guilty about that sometimes, but I just wish everyone knew that I'm not being dramatic. I actually feel like I'm going to pass out. [00:25:28] Jill Brook: Yeah, you sound like someone who's really not dramatic for what you've been through. [00:25:32] Hannah: Sometimes I can be, I can be, or I feel like I am. I'm like, I promise I'm not trying to be dramatic, but I just need to put my feet up. [00:25:40] Jill Brook: Is there anything you'd like to say to your fellow POTS patients who may be listening? [00:25:44] Hannah: Yes, your symptoms can get better. Most POTS patients, it does get better. Just with time and with age and figuring out what works for you. So just because it's might be bad right now, it very well could get better. [00:26:02] Jill Brook: And final question, why did you agree to let us share your story today? [00:26:07] Hannah: Because my story is pretty unique and I feel like a good view of what POTS are and how to share it in light of POTS and not kind of let myself be a victim to POTS, but to figure out a way to let everyone know that you can reign in your POTS. [00:26:29] Jill Brook: Excellent. Well, Hannah, thank you so much for sharing your story today. We so appreciate it and I know that everybody is sending really good vibes your way for continued healing. [00:26:39] Hannah: Thank you so much. It's been fun. [00:26:41] Jill Brook: And hey listeners, I hope you enjoyed today's conversation. We'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.