[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 with Valerie. Valerie, thank you so much for joining us today.

Valerie: Yeah. Thank you so much for having me.

Jill Brook: Okay, so let's just start with a little bit about you. Where are you? Who are you?

Valerie: Yeah, so I am actually in sunny Southern California. I was raised here. I am 24. I'm about to turn 25 actually on June 10th. So a little bit over a week from now. I'm the youngest of my three sisters, which is hectic, to say the least. But I absolutely love my family. I love to spend a lot of time with my family as well as my dog, Brutus.

He's his little shihtzu who's like my whole world. But I'm also a law student which is an aspiration that I've had ever since I was really, really little. So I'm blessed in that sense.

Jill Brook: Fantastic. Okay. So how would your sisters describe your personality?

Valerie: Oh, it depends on the day, but I would [00:01:00] like to think most of the time that they would say that I'm empathetic. I'm very honest. And I'm also very passionate about things that are important to me.

Jill Brook: Oh, so what are some of those things that are important to you?

Valerie: Well, I would say. Ever since I was little, I'm very into like criminal justice reform, which plays a big role in my current path, obviously, to pursue a career in law and become a lawyer. But I'm also very passionate, honestly, about helping people, as well as animals. Just things like that. Yeah.

Jill Brook: Beautiful. Okay. And if we were gonna make you brag about yourself, what are you good at?

Valerie: I make a mean charcuterie board, not gonna lie. But I do, I also, I love baking and cooking and I get a decent amount of compliments on that. So I'm also very good in a weird sense, like I've gotten so many people say that they thought that I was like a party planner or like an interior designer because I've just always had a niche for that, which is

interesting. But I absolutely love it. So I don't know, maybe there'll be a point in my life where I can incorporate that into what I do professionally, [00:02:00] but for now I'm sticking to to law. But I love to do that kind of stuff. Very, very creative I think.

Jill Brook: Fantastic. Okay, so did you have a life before POTS or have you had POTS all your life?

Valerie: I did have a life before POTS. It was actually not too long ago. So, I graduated, I was diagnosed with POTS like officially in 2024, March of 2024, but I had kind of fallen ill in October of 2023. But prior to that I graduated undergrad in May of 2023. I was always like very highly involved on campus.

Enjoyed staying busy. I was like a dual president for like the Criminal Justice Honors Society, the Pre-law Fraternity. I was like very, very involved. At that point in my life, I had obviously graduated, it was summertime. I was taking the LSAT. I was doing my law school applications, and I was actually recovering from five knee surgeries that I had undergone.

Yeah, [00:03:00] throughout, I think from 2021 to 2023. I had gotten my last knee surgery in May of 2023, like it was like for two weeks after I graduated.

Jill Brook: To be clear, you only have two knees.

Valerie: Only two. Yeah, you would be surprised. And all five were just on one knee, so I don't know if I'm lucky or, yeah, I don't know if that's better or not. But yeah, all the left knee, so that was, which is, I, it's kind of ironic that that has nothing to do with my situation, but I was kind of balancing that physical aspect of my life as well,

at the time. But I was on vacation. I was in North Carolina at the time, but I was visiting my sister in Virginia Beach, and then I had gone to Southern California to visit my sister Natalie. And that was when I, I had had like a raging migraine for about two weeks. And my dad

had kind of suggested, he's like, hey, like obviously it was not normal for me. Like I've obviously had my fair share of migraines and headaches throughout my life, but nothing extensive or to [00:04:00] that amount or length. So he was kinda like, hey, like let's be conservative and let's go to the hospital. And me being me, I was like never scared of doctors, needles, nothing.

I would go into my knee surgeries and be like, see you dad, like, pick me up when the doctor calls. Really, I really didn't care in that sense. So I had actually, I was like, hey, like, yeah, like maybe I'll go. It was later at night. I was like, I'll just go by myself and like, just check it out and see, make sure nothing's wrong with me

that needs to be addressed medically. And it was in the hospital. They had given me an IV that I had a really, really bad reaction to. And I like, it almost took my life. And from, yeah, I was like, within two seconds there was crash cart and doctors in the room and everyone around my bedside. It was very, very scary.

Jill Brook: Did you have anaphylaxis or do you know what happened?

Valerie: No, doctors have tried to figure it out. It was Reglan. So that's also, I would love to kind of spread awareness [00:05:00] about that and just 'cause I've read a lot and there are instances of that happening to people where they can like go into cardiac arrest or like, a lot of people just have very, very negative reactions. And it's kind of just been chalked up to like, I guess how it can shift like the homeostasis of your body and like how it can also like cross your blood brain barrier.

So the main issue with that I think is really, I mean the medicine has like a black box warning, but it also is really, really based on how it's administered. So it's been confirmed that it was also pushed way too quickly when they, when the nurse gave it to me in the IV. So I think that was like probably about 85% of the problem.

Aside from like, I've obviously read a lot about it and learned a lot about it ever since this happened, but there are just like a lot of risks in general. Like it can cause like tardive dyskinesia, things like that. So the medicine in itself is not the safest, but I didn't even know that I was receiving that.

So, yeah, it was a whirlwind [00:06:00] of an experience. I was lucky enough that my sister was like right down the street, so she had come to be with me after that. But the next morning I knew, I was like, I was not the same. And like, it was really strange, like within 24 hours I had developed like severe facial numbness on the right side of my face, like from my cheek down to my lip.

I couldn't feel my face. And they had told me in the hospital, they were like, if you have any weird symptoms or anything, of course, like, because of what had happened to me, they were obviously very concerned and they were like, you need to come back immediately. So I was like, what is going on? I ended up going back to the hospital for that and they had told me that it was like extrapyramidal symptoms, which can be a result of Reglan.

And I just started getting like weird muscle spasms all throughout my body. Like you could see my pulse like just randomly, like on my neck, my arms, like, it was really, really strange, but I had known like right after that, I just was not the same. It was not normal. And I was like, I just need to go back home to North Carolina, [00:07:00] get some doctor's appointments set up and like figure out and get to the bottom of this.

But yeah, from that like next day, I was like really, really, really outta breath. My heart was racing nonstop. I had gone back to North Carolina and I was like staying at my best friend's house for a little bit. I was just like bringing groceries in and I was like, I can't even walk from the car to the driveway without feeling like extremely ill.

Jill Brook: So when you had the bad reaction to Reglan, you know what exactly happened? Was it that your blood pressure crashed?

Valerie: It was my heart rate. It was my heart. So my heart rate had gone up to like 197 beats per minute, within like two seconds. And they, I think they had mentioned that like it had briefly stopped, but I don't know how that is even really possible, to be honest. But they were like about to shock me.

Jill Brook: And you were conscious and aware the whole time?

Valerie: I like couldn't speak. [00:08:00] So that was, I think like the worst part because I was conscious and I was seeing everything happen around me, but I couldn't speak words. And I was like, uncontrollably, like shaking. So it was a very, very scary and very strange experience. I've obviously never had anything like that happen to me before.

And, yeah, luckily they ended up having to give me like other medicine to like calm my body down and calm my heart rate down. And my sister had come, so I was okay after that.

Jill Brook: And so you said that this medicine is known to occasionally do this, and so it comes with a black box warning. Had you gotten informed consent about all this and...

Valerie: So the black box warning is actually for, I believe, I hope, I think I'm correct on this, it's for the tardive dyskinesia and like other movement disorders, so like similar to like kind of Parkinson's and stuff. So it's not related to that, which I find absolutely bizarre. But there is research out there that shows that that can happen or a [00:09:00] lot of just other symptoms, especially based on the rate of administration through the IV.

But I have also since gotten in touch with a lot of people that they have had really, really horrible reactions. And like, where they also, they were like, oh yeah, I thought I was dying in that exact moment. But also I've heard even stories from doctors and nurses where like my main neurologist now, he's like, I never administer that medication because of how scary it is.

Or like, I've had nurses tell me like they have had pregnant ladies like, go absolutely insane, rip their IVs out of their arms and try running away because it causes really, really scary reactions. So...

Jill Brook: What is the drug supposed to do? Do you know what it's supposed to help your migraine via what mechanism?

Valerie: It was supposed to be a part of a, like migraine cocktail per se, which I am also like, I think a big thing about me, which kind of plays into all of this, I was honestly kind of raised this way, but like very, not anti-medication, but just like a [00:10:00] conservative

person with medication. Where like, I didn't like to take medicine if I didn't need to, or like just avoid it, kind of like, unless it's like really, really necessary like antibiotics. But they, like I went through all my knee surgeries without pain medicine where people looked at me like I was crazy, but I was like, I just, yeah,

I would rather kind of just work through it physically. That's just always been the kind of person that I was. But they had mentioned in the hospital and like, I think that also goes to say how much like pain I was in where they were, like, they told me they were gonna give me like Benadryl and Toradol, which I've had obviously both of those.

I had had Toradol like after like my second knee surgery was really, really bad, so I did have to have like a shot of that. And I've of course had Benadryl 'cause I've had pretty bad allergies my whole life. So I was like, oh yeah, like, that's okay. I didn't know about the Reglan until after, which I think maybe because it like wasn't the main, like part of the medicine cocktail.

I don't know. That's maybe why they didn't mention it, or maybe they just [00:11:00] like breezed over it. But it's essentially used for like an anti-nausea effect because sometimes people can feel sick to their stomachs. I think maybe from the Benadryl or something. I'm not sure. So I personally, I didn't even need it, which,

which stinks looking back, but you, of course, you can't change anything. So I like to stay positive about it. But yeah, it's just a part of the three medication cocktail that they like to administer. But...

Jill Brook: Okay. Okay. And so all this to a lead up to then when you got back home and you're trying to carry groceries just from the car into the kitchen...

Valerie: I was like, I am not. I am not the same. I think that that is where a lot of like my anxiety, I never had anxiety to be honest. Like I would like to say I had, I'd gone through like a decent amount in my life, especially with like my knee stuff and everything. Like I've had a decent amount of challenges.

But I am really grateful to say I don't think I struggled ever with like mental health. [00:12:00] To the extent that I did after this had happened to me, which I obviously I've learned a lot from. So I like to think of it in a good way now. But I just knew right away that nothing, or that something was wrong with me, but I didn't know what it was.

So it created a lot of anxiety, which I know a lot of people with POTS go through. And I know that sometimes like the diagnosis process can also be extremely long. So I'm also grateful in the sense that like, mine didn't take that long. But from that timeframe October to March, it was like test after test.

I was basically like home bound, bedbound. I did not know what was wrong with me. And myself, and also my doctors were questioning if like there was something wrong with my heart, like if my heart had been damaged from what had happened to me. So that was also very, very scary because I was like, am I just going to, quite frankly, like drop dead,

anywhere I go or anything I do. So I was very like crippled by that, to be honest, for a while. Especially when [00:13:00] you don't get any answers from doctors when like you feel like, and there's only so much doctors can do, but when you put all your trust in the doctors and they don't even have answers for you, it's really scary.

But yeah, I was lucky enough. I had found a doctor in North Carolina. I had gone to like one cardiologist, had no idea what was wrong with me. Like my EKGs and stuff were coming back normal. And then I had gotten all the tests you can think of, like echo, stress test.

And then one night I was in Walmart, like shopping around 'cause I was just trying to like, honestly, distract myself, get through things, pick up some groceries to make dinner for my friend and I. And I had a really, really, really bad episode with what I now know as POTS. Like it was like an adrenaline dump episode, but it was very, very similar to what I'd experienced in the hospital.

And I had actually had a heart monitor on during that. So the ambulance like had to come and I had to go to the hospital. But I had the heart monitor on, and the heart monitor clocked my heart going 188 beats per minute. And they had thought that I [00:14:00] was like in SVT, so they had like given me adenosine, everything in the ambulance and they were like, my heart wasn't slowing down,

they're like, we don't know what is going on. The next day I had another episode. Had to go back to the hospital. And then that is when I found a different cardiologist who was on call and he kind of started treating me and take, took over my situation and he like gave me like an ambulatory referral to his office, which was incredibly kind of him.

But he was the one who'd mentioned, he's like, this sounds like adrenaline related and like orthostatic related. And I was like, now that you think about it, like, yeah. So that was kind of the first step in the process and he was like, we're gonna run some other tests, some blood tests, urine tests, things of that sort,

'cause he was also worried about like an adrenal tumor, things like that. And at that point, 'cause obviously they had had my heart monitor, they were like, yes, something is going on, but we just dunno what it is. And then, I honestly, being me, like [00:15:00] I just went home and started reading a lot and I was like, what could this be?

I am known for kind of taking matters into my own hands, to be honest, even if I'm like a little bit of a pest about it sometimes. But I'm glad I did in this sense because he had mentioned briefly, he's like, oh yeah, we might need to get you like what's called the tilt table test. And I was like, okay.

He's like, but it's not a rush. We can kind of wait it out, see what these other results come back with and just like wait and see what happens. And when I had gone home and started reading and I had like gotten out my old Apple watch and I was like, wait a minute. Like I, this could be I think what I'm going through.

And it was very much true 'cause I never put together that like, 'cause I was very anxious even laying down when all this started happening because obviously I was just anxious 24 7 not knowing what was going on, but I'd never put together that my heart rate was a lot worse upright and that these episodes were a lot worse upright because I still was having some symptoms laying down and stuff.

But after that had happened, I was a little bit eager with [00:16:00] my doctor and I was like, I think we should really get this scheduled. And come to find out, of course, failed miserably, the tilt table test. I think my heart rate went up like 47 beats per minute. So, right away he had referred me to a dysautonomia specialist who are obviously very hard to come by in North Carolina.

He had like a two year wait and I wasn't even set to see him until July of this year, which is insane to think about and saddens me that like, I think a lot of people with this illness go through that similar situation. But yeah, I, they, I talked to their office and they were like, oh, if you call you might get lucky enough to like catch a cancellation. So you best believe I was calling every morning and I had gotten in in like a month and a half, which they were like, that is unheard of. So I was very, very, very lucky with that. And I had gone to see that doctor who was absolutely incredible and I would say he's probably like [00:17:00] one of the top reasons why I think I'm doing a lot better.

Jill Brook: Yeah. So what were they able to recommend for you to do, and how much did it help you improve?

Valerie: Yeah, so he like looked at my information all my, like my health packet and everything, and within two seconds he was like, you for sure have POTS. Because at first the other doctor was like, oh yeah, like, he's like, I know obviously what it is but I don't know really how to go about it.

So it was like in the, the discussion, but it wasn't like an official diagnosis. So he within like literally minutes was like, yes, you for sure have POTS. Did some other things, he's like, you for sure also have like, you're on the spectrum of like hyper mobility. Which I think was just genetic. Like mom was a dancer, so it was kind of bound to happen.

But he kind of just ran through everything with me. And I had already tried a few medicines. I had tried, like fludrocortisone, I had tried Corlanor, which I had really bad reactions to as well. I think my body's just really sensitive. So at that point I was like [00:18:00] really, really, really scared to try anything else.

Also, because of what had happened to me was also, this all started because of medication. So I had a hard time with that for a long time. So I, when I was in his office, I kind of expressed that to him. And he was obviously very like, courteous to my feelings, but just the basic kind of like fluids, he gave me like the CHOP protocol,

but kind of went over everything with compression and all this stuff and like honestly just educated me about everything and like food and stuff, which I think was really important, but I kind of then obviously took a lot more matters into my own hands for like the other steps that I wanted to take after that.

But fast forward like a couple of months, when I had really done a follow up with him. I actually took it into my own hands, I did like a pharmacogenetic testing to check what medications would be good for me. And I had went over it with him, and then that was when I decided to go on a beta [00:19:00] blocker.

Jill Brook: And is that a blood test? And did you do that on your own or did he order

it? I'm, because I'm sure there's lots of people listening who are interested in having that done. Is that something that you had to request and did you only get it paid for 'cause of your scary reactions in the past?

Valerie: Yeah. So I, and that's like another reason why like I personally love to like talk to people who also have this, because I really think that this was something that was really crucial for me, or in my, I guess like healing process. But I had fully found this out by myself. I had done my own reading because I was like, I just obvious I've known my body was really sensitive, but obviously now it was like to a whole nother level.

Jill Brook: And did you get good information from that test? Did it tell you

some types of medication that you shouldn't use?

Valerie: Yeah, so I found the, the test all by myself. I paid for it all by myself. It was around like $400, which was obviously a little bit pricey. Some insurances can reimburse you. It really just depends. But [00:20:00] I got it through a company called ClarityX. It was a really quick turnaround. It was just like a mouth swab and then you mail it in. You get your results really quick, and it's very detailed and thorough. And what was interesting for me was because one I, and I think this is like a big halt as to why, like I had spent a few months after my diagnosis, like still not doing well because I had all these doctors, like even like the prior doctor was like, we cannot put you on a beta blocker because of your blood pressure.

So you need to like cross that off and you can't even think about that. But to me, I'm like, in the back of my head, I'm like, my main issue is definitely overflow of adrenaline. A lot of these symptoms are from too much adrenaline. So like I really do think in the back of my head I'm like, I think a beta blocker would be best for me.

Then I had different doctors telling me, oh, go on propranolol and all this stuff. But my new doctor, the doctor that really helped me was like, you can't be on this, this, and this because like you can't be on propranolol because your body, the way that I metabolize things, like I don't do well with like short acting [00:21:00] medications.

So he is like, you need to be on a medication that is longer in your system. Like I'm on bisoprolol right now, which I only take once a day, stays in my body and it's really, really helpful at just managing my heart rate, which has made like the world's difference. But what's interesting is I ended up getting my pharmacogenetic testing back, and bisoprolol was the only one in the green. So it was like a confirmation that I was like, okay, like I could have a lot more confidence in trying this new medication. And a big part of it too, which this doctor also told me, he's like, he really, really understood like how sensitive my body was, and he is like, you need to start very, very low and slowly work yourself up.

So I think that's something that some electrophysiologists or cardiologists maybe don't understand is that our bodies, people that have POTS or dysautonomia, like our bodies are already in such a sensitive state that like anything you try or any medication, like you really can't try more than one thing at a time that's new.

And you really, really need to go kind of slow with whatever process you start, whether it's even like [00:22:00] vitamins or medications. And he really, really stressed that to me. So that was really important and I had a good reaction to it, which was a lovely surprise. But I just found it really interesting that all these other doctors were also suggesting all these medicines that come to find out did not work with my body.

Jill Brook: Interesting. Okay. And so with that genetic test that you did for the pharmacogenetics does it tell you kind of like globally what medicines or, or classes of medicines are good or bad? Or is it pretty limited? What they tend, what they know?

Valerie: I dunno the exact amount, but it's almost every single field. It's like antihistamines, even like oncology, anti-psychotics, anything. It's all, it's across the board, a bunch of different medications. It also tells you a lot about like your genetic mutations. So like I ended up also finding out that like I have like the M-T-H-F-R genetic or gene mutations.

So that also come to find out also plays a big role with [00:23:00] people who like, have histamine intolerance like myself and things like that. So it's really, really, really important to understand those things about your body, which before all this, I would've never even thought about 24, 23 years old.

Jill Brook: So, did they test you for Mast Cell Activation Syndrome? You

mentioned histamine intolerance.

Valerie: They did and I've had, it's crazy to think about because I'm like, I also know looking back and I like have obviously listened to a few of your other podcasts where I think a lot of people have this similar situation where they're like reflecting on their life and they're like, wait a minute, like a few of these things are kind of adding up.

But then you kind of have this like breaking point I think, which is maybe what happened to me, where like I know for a fact that after that day and after that incident in the hospital, I was not the same for one reason or another, whether it was the trauma or the physical effect that it had on my body.

But I also know, looking back, I'm like, it's not normal to have gone through five knee surgeries. And I also know like losing that amount of strength and muscle and like the atrophy that my leg had succumbed to for the past few years, like that for sure takes a toll on your blood [00:24:00] flow in your leg, and like your strength. But also looking back, I'm like, I've always had issues with histamine, histamine intolerance, and of course I was born with hypermobility.

So like, it's, it's interesting to look back and kind of piece things together and say, oh, this could have, there were signs, but it definitely was nothing to this extent. So...

Jill Brook: yeah. Okay. So how much better are you now? Because I know you mentioned at one point you were bedbound and now you're in law school, so

it sounds like things got a bit better.

Valerie: Yeah. I would say around like November of 2024, which is when I had started my beta blocker, and then I had also gone on a new medication, it's hydroxyzine, which has also helped me a lot with my histamine. I have been a lot better than where I was, like I'm, I was not able to drive, I really wasn't able to do anything for a solid amount of time there, I would say [00:25:00] like almost a year.

Yeah, a year. But I am able to mostly be on my own, function to a pretty normal extent. I still have some bad days. But I think it also has to do with even like, my female cycle. That definitely I know plays a lot into people's symptoms. And a lot of that what has to do, I think with, I think pacing myself, but also like making sure that I eat the right thing.

So I also notice like I'll get like little flareups if I eat something that my body doesn't agree with. I've also, I've always been allergic to gluten. My gluten allergy got lots worse like five years ago, so I've been completely gluten-free for five years I would say now. So I definitely notice little flares and I still have some issues.

Like I have issues with like my ears, my vision sometimes, some bouts of tachycardia, but that's mainly like if I'm not eating properly or like making sure I stay hydrated 'cause I know obviously also when you get really busy the way that I do with everything that I have going on, it is kind of hard [00:26:00] to like snap back into it and remember and remind myself like, hey, you have to go slow.

And you need to do this, this, and this to kind of stay on top of your health. Because I've also learned the hard way that your health truly is your wealth. And if you don't, if you don't have your health, you really can't do anything. So, yeah, just making sure I'm on top of it to kind of avoid those bad days, but also making sure that I give myself time to rest, which has been something that I've really, really been trying to focus on.

Now with work and also with law school, I like always have to take a breather on the weekend and sleep well for sure during the week. That's a big thing.

Jill Brook: Okay. Okay. All right. But it sounds like you don't have too many limitations now?

Valerie: Heat, to be honest, the heat is a really bad one for me. But it's so interesting looking back, I'm like, I've never liked the heat. Like if all my friends joke with me because I was raised in California, but obviously going to undergrad in North Carolina, a lot of my friends were from like New England.

And I was like, oh [00:27:00] my gosh, you guys are so jealous. And they'd look at me like I was insane, 'cause they're like, what do you mean? Like you're from sunny Southern California. But I've always loved the cold. I've always felt better in the cold. But now it's just, it's to a whole nother level. The heat intolerance is through the roof, so that's something I have to be careful with, especially during summertime.

That is, I would say a main limitation of mine. And I'm a lot better, like going out in public and doing things. But yeah, just making sure I manage my symptoms and kind of put my health first before everything else, which is, it's a challenge on some days, but I know that it has to be my main priority, so...

Jill Brook: It sounds like you were really proactive and you did all your research and you tried a lot of things and you got a a diagnosis faster than most people. But I guess is there anything where you feel like, oh man, if I had only known that sooner, everything could have been so much easier?

Valerie: Yeah. One, I think the pharmacogenetic testing, especially because like I was in a group with a lot of people who [00:28:00] have POTS and even like, it's also so interesting because after my diagnosis, I have come to find out like that there are different people in my life that have had this and like, I didn't know about it beforehand, but even just the other day, I ran into a girl and she, like, I was talking to her and she had like on her little like Apple watch band like that she had POTS. And just speaking to her about it, like a lot of people don't know,

she's, I mean, the first thing is like, everyone's like, I don't know where to start. I would tell myself the first thing to do is the pharmacogenetic testing, which I know it is maybe out of reach for some people financially, but there's definitely ways to like work with your insurance about that. I think in some cases you could, I think you can get it

paid for and not have to pay out of pocket to get reimbursed if like your doctor kind of prescribes it. Which might be a little bit more difficult or like a longer wait, I would say. But that was the biggest thing. Definitely advocating for yourself and [00:29:00] a lot of doctors I think don't have a great understanding of the illness, which I wouldn't even say is their fault.

I think it really just has to do with the amount of research that's out there. And I do think that there are a lot of recent developments which will hopefully kind of expand the knowledge that everybody has on POTS and how to treat it. But I think if you kind of have any sort of feeling that like you're not in the right hands with the right doctor, keep

researching and taking matters into your own hands and truly, truly advocating for yourself and calling doctors and just being proactive about it and making sure that you are in the best hands possible. Because I even just, I had a conversation with a girl who's like, been bed bound and home bound since she was 15, and she's into her twenties now, which I'm just, and she has not even been able to see a doctor in years.

So that breaks my heart, just hearing situations like that. But I think also knowing that it is possible to still do the things that you wanted [00:30:00] to do or wherever you see yourself. And the biggest thing that was told to me by one of my doctors was that like, you are the same person that you were before you got sick.

And I think that's something that I really needed to hear, to be honest, because when all this happened, I was like, wait, I'm not the same person. I can't do this. I can't do that anymore. At the end of the day, you are that same person. And I think assuming the role of a sick person, which obviously a lot of us wake up feeling horrible, and my doctor likes to say, he says, POTS makes you feel like you're dying, but you're not. So feeling that way,

it's very easy and obviously natural to really, really feel like you're sick and you are sick, but shifting your mindset makes the world's difference, and I think that was something that really turned things around for me was focusing on being positive and reminding myself that no matter what or the situation that I was in, looking back, even going through five knee surgeries and like not being able to walk for like eight months at a time was [00:31:00] crazier,

like relearning how to walk multiple times. This situation with POTS was hands down the hardest thing I've ever been through in my life. But just staying positive and reminding yourself that things could always be worse, and just reminding myself that like even if POTS makes you feel like you're kind of dying, it's not terminal.

And for that reason, like I am very blessed. And just being positive really, really I think is what got me to where I was at, and planning ahead, planning saying that I am going to law school, I am doing this, I am doing that. And then suddenly all these things kind of started to fall into place. And I think that's a big reason as to why I'm able to be where I'm at now.

Jill Brook: Fantastic. Well, that's wonderful. Congratulations. Are you up for doing a speed round where you just say the first word that comes to your mind?

Valerie: Oh, sure. Why not? I love the challenge.

Jill Brook: What is your favorite way to get salt?

Valerie: Oh my drinks. I have like an Emergen-C packet every day and I just [00:32:00] put crazy amount of salt in it, so...

Jill Brook: What's your favorite time of the day and why?

Valerie: Ooh, probably nighttime. It's a lot calmer.

Jill Brook: Where is your favorite place to spend time?

Valerie: Probably anywhere where my best friend Jackie is.

Jill Brook: How many doctors did you have to see for your POTS?

Valerie: Oh. I would say upwards of 10 all across the US, so...

Jill Brook: How many other POTS patients have you ever met face to face?

Valerie: Two face to face.

Jill Brook: What's one word that describes what it's like living with a chronic illness?

Valerie: Hungover, to be honest, I think that's what most people feel like with POTS. And tiring.

Jill Brook: What is some good advice you try to live by?

Valerie: I think, you have 99 problems until you have a health problem and then you have one. So I think just being grateful for every single day and counting your blessings, I think truly [00:33:00] goes a long way, so staying positive.

Jill Brook: What is something small or inexpensive that brings you comfort or joy?

Valerie: Hmm. I would say my shihtzu, 'cause he's only 12 pounds, but he gets pricey sometimes. But no complaints. I wouldn't change it for the world, so...

Jill Brook: Who is someone that you admire?

Valerie: My best friend Jackie. She is, like the best person I think I've ever met in my entire life. And she, she's actually about to graduate from PA school and I'm so glad because I think the medical field really needs her. But she is like the most patient and calm person you'll ever meet. And I just remember like when I had my knee surgery, like my really, really bad one was my second one, and we were in college at the time.

And she would like come over to my dorm every morning and she would like bring me food. She would help me like, change my pants, tie my shoes, and she would, this girl would like hold my hand and walk across the street, even if I was like, Jackie, I'm fine. So her level of [00:34:00] just like kindness and really, really being empathetic and putting everybody above herself, I think she just, she puts everybody before herself and that to me is something that I really look up to. And she's so driven and determined, and I love that about her, so...

Jill Brook: Thank goodness for people like that. That's great.

Valerie: So, so, so, so glad, yeah, to have her in my life.

Jill Brook: Okay. Have you ever had to lie down or sit down in a weird place because of POTS, and if so, where was the funniest?

Valerie: Yes, it was, this was before beta blockers, so definitely I had a really, really bad adrenaline dump and this is when I was like, wait, maybe I think I do need to be on medication. But I was at the mall with my dad and like, it's not really a strange place, but that was brutal. I was in a Nordstrom and I was like, I have to sit down in a dressing room immediately.

Otherwise, I dunno what's about to happen, so...

Jill Brook: You know, it's funny, I think Nordstrom's are actually pretty good 'cause they usually have sofas in their bathrooms.

Valerie: Oh, they were so nice too. They were [00:35:00] so nice. So I was like, okay, thank gosh this happened here. But it was brutal and I was like a far walk from the car, so I was like, oh no, but it's okay.

Jill Brook: You know, there's probably a marketing opportunity for some department store out there, or clothing store to advertise itself to women who are of POTSie ages, and their selling point would just be that they have plenty of places to lay down.

Valerie: No. Yeah, they did. They, well, Nordstrom, they also have like, outside of the rooms, they have like those little areas just for people to sit, other people to sit. So they got it all set up there for us. So maybe it's a safe place to go. But yeah, it was, it wasn't too bad of an experience, but I laugh at it now, so...

Jill Brook: Well, I just have a couple more questions. What do you wish more people understood about POTS?

Valerie: I think the gravity of which it really holds in somebody's life who has POTS because like, I can't even count the amount of times where they're like, people are like, what is that? [00:36:00] Which granted, that is not your business to know. You don't have to know it, so I'm happy for you. But when you say like what it is, it is kind of just understood as something that like affects your heart rate when you're standing.

But it is so much more than that and it affects like almost every single aspect of your body and your ears, your eyes, your stomach, your blood pressure, your breathing. Everything. It's not just your heart rate. And I think just trying to be more like understanding and also just like checking in on people that have POTS and just seeing how they're doing.

Because life definitely ranges like from day to day for people that have that. So yeah, just be more understanding of it.

Jill Brook: Yeah, that's great. Okay. And last question. Do you have any words for fellow POTS patients out there, especially somebody who might be struggling today?

Valerie: Let's see. I think, honestly, I've said it a few times, but like, just focusing [00:37:00] on one, I think with our illness, like it's really, really important and I can't stress it enough, obviously advocating for yourself, but also like keeping the peace in your own life and being positive and making sure that you're surrounding yourself with people that understand that and also encourage that.

And I feel like for us it's very like, at least for me, like I'm very sensitive to stress and things that matter. So don't feel guilty for putting yourself first, because it really, it's not a selfish thing to do. It's something that you have to do if you wanna be able to be there for other people in your life or kind of be the best version of yourself.

But I also think, like another big thing for me was shifting of my focus from like fixing all of my symptoms because that was like, I, there was a point where I just became suffocated with that because I was like, how do I fix this, this, and this? But I'm like, there's also a bajillion problems wrong, wrong quote with your body when you have POTS, because it's like just an influx [00:38:00] of one other thing bothering you one day, and then the other thing is bothering you the next day.

So I think shifting your focus from like fixing all your symptoms to just understanding how you can live your best life with them and despite them, because for me, I personally was in a head space where I was like, I can't do this. I can't go to school. I can't go here, do this outing, or go to this concert, or go to this event with my sister, hang out with this person until I'm feeling better or until this is fixed.

And unfortunately, the truth for a lot of us is like, I know some people can grow out of it if they're younger, if they have like adolescent POTS, but for most of us, this could be something that we struggle with for the rest of our lives. And I really, really, really tied myself back to like the fact that I was like forgetting to really live my life.

So I think just trying to make the most out of any situation that you can and just living despite what is going on with you physically [00:39:00] and not putting your whole life on hold just because you don't have a lot of things figured out, which I know is a lot easier said than done. And that's coming from my own experience.

So, yeah. And also understanding your genetics is a really, really, really big part of it. So I definitely urge people to do that and look into that further and learn about things on your own time so that you can also be aware on a deeper level of what's going on with you and not just listening to doctors.

Because one, it helps you have a better understanding of what's really happening and how you can best serve yourself. But for me, like throughout the process, I think there was a lot of important questions that I came up with on my own, or like a lot of things that I did on my own that played a big part in like how I approach things with my doctors and found the best route of like treating my situation, which of course is like a daily, it varies day to day still, but I'm certainly in like a [00:40:00] much, much better place.

So I'm really grateful for that.

Jill Brook: Well, that's great advice. Well, Valerie, thank you so much for your time and your insights and your stories that you shared with us today. I know that everybody listening just wishes you all the best and it was wonderful talking to you.

Valerie: Yeah, thank you so much. I really appreciate the time you took to talk, so thank you.

Jill Brook: Okay, listeners, that's all for today. 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.