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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 Alici'a. Alici'a, thank you so much for being here today.

Alici'a: I am happy to be here. Thank you for having me.

Jill Brook: So tell us a little bit about you. Where are you? How old are you? What are some basics about you?

Alici'a: I am from a small town in Wisconsin. I am soon to be 19 in a month, and I have had POTS for about five years.

Jill Brook: Happy birthday. I'm from Wisconsin, so I have to ask where in Wisconsin you're from.

Alici'a: Marinette.

Jill Brook: Oh, okay. Wonderful. And okay, so remind me, what is your mascot? I think I probably, you know, played your soccer team in, you know, high school or something.

Alici'a: The Marines would be the Marinette high school mascot.

Jill Brook: Okay. And tell us a little bit about your personality. What would your friends or family say about you?

Alici'a: I am [00:01:00] a very bubbly and kind of loud person when I'm around the right people. I am an animal lover. I know they would all say that I have a bunch. Just a very friendly person overall.

Jill Brook: Oh, can you tell us more about your animals?

Alici'a: I have two German Shepherds, a female and a male. Uh, the female is soon to be 12 in June as well. The male is three, and I have five goldfish and a little cory cat along with a rabbit.

Jill Brook: Oh, nice. Do they all generally get to get along together?

Alici'a: Yeah. Weirdly enough, my female shepherd and my bunny get along rather well. They will play together.

Jill Brook: Oh, oh, that sounds amazing. I used to fantasize about having a bunny garden. I just wanted to have a garden with like a hundred bunnies.

Alici'a: That, that's me with dogs.[00:02:00]

Jill Brook: That sounds amazing. Okay, so what else do you like to do for fun besides be a parent to lots of animals?

Alici'a: I, uh, I like to listen to a lot of musicals. Go on walks with my family, bike rides. I read along with playing the Sims, which has been something I picked up since I got POTS. Just kind of my little safe haven.

Jill Brook: And do you have any favorite musicals? What are you listening to currently?

Alici'a: My current is Hamilton. My Spotify told me that I have listened to 700 minutes in the last week. So...

Jill Brook: Are you trying to like learn all the words to some of the faster songs?

Alici'a: I already do.

Jill Brook: I know it's funny. I swear to God that there was a time, I think Hamilton came out when I was at around my low point, and I was just so sick and feeling so bad. But Hamilton was such a wonderful distraction and I think it took me like a year to learn all the words and I was so [00:03:00] grateful for it, to have to have that like little brain project when I'd sort of being lying there miserable.

And it's still like one of my go-to soundtracks. Like if I'm in a long car ride, I do not do well in car rides. And so singing along to Hamilton gets me through sometimes.

Alici'a: The soundtrack is just beautiful and it has such like deep meanings in a lot of the songs. Um, it, it got me through high school, so yeah, my senior year was Hamilton.

Jill Brook: Do you have a favorite song to sing along to?

Alici'a: Dear Theodosia or Wait For It.

Jill Brook: Yeah. Oh, fun. Okay. And if we were gonna make you brag about yourself, what are some things you're good at?

Alici'a: I don't know. That's not something I think of. I like to think I'm decent at makeup. I, I usually ask this question to other people. I'm not used to answering this.

Jill Brook: So I think you could qualify as someone who's good at being not self-centered.

So tell us about your [00:04:00] life a little bit more than five years ago, like right before POTS set in, what were you up to? What, what did your routine look like?

Alici'a: So, since I was in 3-year-old pre-K I went to a private Catholic school, which is where I was in middle school and high school before I got sick. And I would go to school, go on bike rides afterwards with my dad, go to movies, hang out with friends. In the summer, Bay Beach was a big thing along with zoos.

I was able to do a lot more than I am now, but I think I'm better how I am now.

Jill Brook: Ooh, interesting. Okay. I'm excited to get into that. But first maybe we can hear like, what was your first sign of POTS?

Alici'a: I started getting very nauseous. Nausea is one of my [00:05:00] main symptoms. When I was about 13, 14 I was waking up in the middle of the night at like three or four in the morning before school and sitting on the bathroom floor over a garbage can. And I would end up falling asleep in there some nights.

And my mom was just thinking like, what could this be? 'Cause I started seeing a, uh, GI specialist to kind of figure it out 'cause we didn't think anything else of like fatigue or every other symptom POTS comes with. So that was my first like telltale sign.

Jill Brook: Wow. That sounds horrible. Okay, so then what happened?

Alici'a: Weirdly enough, my mom was watching tv. She was watching a medical, like documentary and they had described, they had an episode that described POTS. And she went to me, she's like, this sounds like you. So we brought it [00:06:00] up to my GI specialist at the time, and he gave me a referral to a POTS specialist in Madison.

So then I, I went there. That's where it kind of started.

Jill Brook: Wow. So that's actually super impressive because I think that the GI symptoms don't always headline with POTS, and so it's impressive that this show was talking about it. Did you have all the other normal POTS symptoms too?

Alici'a: I, um, I had fatigue and I had a lot of stuff going on with my vision, but I always have. The nausea is what my mom first like noticed and they brought up that in the show, which you don't see a lot of POTS awareness or coverage these days or at all. So it was kind of weird.

Jill Brook: Yeah. Okay. And so I guess before we go on, so what did it look like at your worst? Give us a snapshot [00:07:00] of your most severe POTSy moments.

Alici'a: I, um, my worst was I couldn't get out of bed. I would be sleeping with a garbage can in my bed. I would fall asleep on the garbage can. I woke up one night or one day with a ring on my forehead from it. That, that was a pretty low point. But not being able to get outta bed and having to shower every other day and washing my body separate from my hair. Everything was just

like a multiple step thing for me, and that's when it was really bad.

Jill Brook: And, with your vision and did, did you also have like brain fog? Like how was school at that time?

Alici'a: I did have pretty heavy brain fog. I still do. The vision, I still can't figure out what's going on with it, but like, everything's just, lines bother me. And I was a volleyball player in school, so that immediately. You know, was out of the [00:08:00] picture. I ended up having to leave that my academics weren't great because I couldn't get to school,

'cause I was stuck in bed and they weren't very much help at school. So I was kind of just left, and my grades rapidly declined.

Jill Brook: Yeah, I can imagine. So once you had that diagnosis, did that help very much? Were you able to get access to treatments that made a difference?

Alici'a: Um, no. I had tried a bunch of medications. I know a big one in the POTS community is metoprolol.

I got full body paralysis. Couldn't talk. My vocal cords were frozen. I had to text my mom who was sitting right next to me. All of the meds and like the salt even made it worse because for some reason with my POTS, my blood pressure is higher, so the salt just makes it [00:09:00] worse.

I did this last year, tried to fight for a treatment called the IB Stim, which is actually for IBS, but there is research shown that it can help with POTS. But my insurance would not cover it. And they had told me about a month ago that I would not be getting it.

Jill Brook: Oh wow. Okay. Can we go back to your paralysis? Is that a known side effect? How long did it last? How terrifying was that?

Alici'a: So in the moment it lasted probably about five minutes. It was terrifying. I'm pretty sure I cried. I texted my mom, I'm like, I can't speak to you. I can't move. What's, what's going on here? Thankfully my mom's a nurse, so she was big help with that. But I, it was not a fun experience for sure. It is the rarest side effect for metoprolol, [00:10:00] and what I have found out through my POTS journey is I get all the rare side effects.

Jill Brook: Yeah. You know, it's funny because I was just watching some videos about about SIBO, Small Intestinal Bacterial Overgrowth, and a lovely, wonderful doctor was talking about how she believes that you need to try every new therapy at least three times to be sure you're really reacting to it.

She said she works with really sensitive populations and that there's so many sort of random off days that you really need to try something three times to make sure you're having a bad reaction to it. And I had to laugh 'cause I was watching her say that like, because there's just no way I know some of the reactions I've had to medicines and I'm guessing you too.

Like no way is there no way am I doing that three times.

Alici'a: I, I have tried sleeping medications because, uh, my POTS caused very bad insomnia. And in this very room there was a night where I tried the medication [00:11:00] Ambien for it. And I called my mom bawling because I thought my ceiling fan was gonna come off the ceiling and kill me.

So that metoprolol, a bunch of other ones.

One is enough for me.

Jill Brook: Yeah. Yeah. Oh my gosh. You're making me realize that I should have a new question in this episode for everyone. Like, what is your worst side effect you've ever had from a drug? Oh my gosh. Oh, okay. Now can you talk more, you said that there's this, this treatment that your insurance would not cover, but that holds promise.

Can you talk more about what that is?

Alici'a: Absolutely. I had actually found it in a POTS support group that I am in on Facebook. And it's a little mechanism that goes behind your ear and it connects with just little like pins, goes right on the back of your ear and it sends signals to the vagal nerve [00:12:00] and it kind of just resets it. And depending on what your doctor and your insurance allows, you can do it multiple different times.

It has to be replaced every five days for however, uh, many times your doctor allows, and it is very expensive. It is not one that is for someone who's just starting out or who, you know, just needs a easy fix, I guess. It is also very hard to get. They wanted just for one time, $21,000. Just for one of 'em, the devices themselves, I was able to get like four for $400.

So a hundred dollars each. But you can't order them till you get them, get the, uh, appointments. So I was kind of at a loss. My doctor was all for it. He had brought it up to me when my nausea first began actually. [00:13:00] And then when I saw that there was research that said that it could help POTS. Even just a little bit to help manage it more,

I was like, can I try this again? My POTS doctor was for it, and then the insurance was like, let's not, 'cause that would be too easy.

Jill Brook: Yeah, that was an amazing moment when I too realized, and I think almost, I mean unfortunately a lot of patients have this moment where you realize that it doesn't matter what your doctor thinks you need, it doesn't matter what the studies say, your insurance is able to say no. So was it something that you plan to appeal and try to fight, or is it one just too hopeless?

Is it too experimental in their mind?

Alici'a: So it is FDA approved, but you, they only allow it for ages 11 [00:14:00] to 18 and in a month I'm aging out. So I can't retry it or appeal because I would not have a shot. It also took me a year to even get this moving 'cause they are very slow with it, which is mostly the insurance. But I would not be able to retry.

Jill Brook: Alright, well I think I'm just going to turn my mute button on and swear for minute. Unbelievable. Except that, you know what, it is believable because like even just yesterday, I saw an article written by ProPublica, the nonprofit, where they were talking about a cancer drug that really helps people stay in remission, and even though it only costs 'em 25 cents to make each pill the cost for each pill is the same as an iPhone.

And it's just because they can. I'm so sorry. So is the mechanism of this through stimulation of the vagal nerve and has your doctors thought of [00:15:00] like other ways that they could try vagal nerve stimulation or is it too different?

Alici'a: It's too different. Like there isn't much else, at least that they know of, that I can do. I was going to go to Mayo, but they require a tilt table. I, when I got diagnosed, didn't get one. I just stood up for 10 minutes, then laid down for 10 minutes and my legs turned purple. And then she's like, you have POTS.

But I think the tilt table test could send me back and I don't want all of my five years of progress of managing to, you know,

screw with that.

Jill Brook: Yeah. Oh man, I'm sorry. And you know, the other thing that goes through my mind is like at, at this point, knowing your luck, you'd probably be one of those people who was like 29 beats per minute above baseline upon tilt. And then they would like say, we can't diagnose you with POTS or give you any of the treatments 'cause you don't qualify.

I mean,

it's just like, just absurdity upon [00:16:00] absurdity upon absurdity. I'm so sorry. So what do you do to help manage your POTS? Is there anything that helps?

Alici'a: So I found out that the antidepressant Lexapro actually helps a little bit to manage it. It helps more with the fatigue than anything. I take eight medications every night, which is lovely. I believe I take three or four nausea medications along with my Lexapro, 'cause then I can try and at least keep it somewhat subdued,

so I'm not nonstop struggling and I can get out of bed and do things. Other than that, having air conditioning accessible, fans, those are a big thing for me, along with staying hydrated, which when I first got diagnosed and stuff, I was a heavy soda drinker. I got off of that in like the last year which was [00:17:00] hard, but the water definitely helps.

I would say if your doctor tells you to do that, listen, because I was stubborn and didn't, um, but it's, it's a lot being told that all you can do to treat this is salt and 80 ounces of water.

Jill Brook: So how often do you now have to sleep with a garbage bucket?

Alici'a: Rarely, thankfully. I think once in the last year maybe, so I, I always have it near 'cause, you know, have anxiety with that now, but I can, I can sleep without it on my bed.

Jill Brook: So you're on four nausea medications, otherwise you're just still so nauseous.

Alici'a: Yes.

Jill Brook: Wow. Wow. Okay. So you said something intriguing at the beginning. You said you think you're actually better off now. Can you talk about that?

Alici'a: So I [00:18:00] believe I became a better person personality wise once I got sick because you never realize what you take for granted until it's taken away. And I, I'm, I'm happy that I can be a person to spread awareness to do things like this and make sure it's out there and known 'cause I wanna be able to help people like me who had no clue what was going on.

And who didn't get it from COVID, ' cause I know a lot of the coverage is from that, which there's nothing wrong with that, but it would be nice if they gave us coverage and awareness for people who got it when they were, you know, very young or didn't get it from COVID. I became more of a just my own person. Because of getting sick,

my school wasn't willing to give me accommodations, so I had to go online. And that helped me blossom as the person I am now.

Jill Brook: [00:19:00] Wow. Wow. I mean, that's fantastic. That's great that that's what you did with all that adversity. Is that something you had to work hard to decide to do? And also, are they allowed to deny you accommodations?

Alici'a: So. We were wondering that too. It was a like year long fight with my school, but because they were a private Catholic school, they did not have to go by the legal, like law that public schools do with accommodations. Um, they wouldn't even let me do my classes online, which we still had in case of like COVID at the time.

So they just would not budge.

Jill Brook: Wow. So how did you turn this, you know, lemon into lemonade?

Alici'a: I basically dropped out my junior year because, or my sophomore year, because I was so sick that I couldn't go to school. My [00:20:00] mom tried homeschooling me, but it just wasn't working. Um. Then my junior year I went through Wisconsin Virtual Academy, so K 12, and they were amazing. The teachers, if they noticed that I was falling behind in the class, they texted my mother and my, I believe it was my history teacher, he texted my mom asking if I was okay, if I needed anything, and she texted him, telling him about my POTS.

He's like, I will send over all the resources she needs, she can take as long as she needs. Just let me know. I can give her, uh, extra time for assignments. All of that.

They were amazing and I think that's really what helped me get through it.

Jill Brook: Boy, it's just so interesting kind of where you find kindness and compassion.

Alici'a: Absolutely.

Jill Brook: Well, that's fantastic. And so with that, you were able to finish.[00:21:00]

Alici'a: Yes. They actually have a credit recovery program. I was able to recover the credits that I didn't have sophomore year and failed freshman year. And then, um, as long as I kept my grades up in junior and senior year, I was good to graduate. And they had an in-person graduation in Madison, which is like four hours away from where I live, and I made it a point to go in person and walk across that stage

because I was not gonna let my illness define me in that way.

Jill Brook: Yeah. Congratulations.

So, so what are you up to now? So you have your high school degree, you're about to turn 19.

So I feel like it's like a stressful time in life. Are you deciding like, what to do next?

Alici'a: So I I took a year off to try and get my health better managed, which [00:22:00] was a little useless because most of what I was depending on was the treatment for my POTS that the insurance didn't approve. But I was able to regroup myself, take a minute, and then in August I will be going to UW Whitewater.

Jill Brook: Wow. Congratulations. That's wonderful.

Alici'a: Thank you.

I got all the accommodations I needed too. I asked for a single dorm because of the trash can issue,

the bathroom. I have an AC. They are great.

Jill Brook: Wow. Wonderful, though that was my question. So you're gonna be on campus on your own, and yeah how are you feeling about it?

Alici'a: I am a little nervous, but I'm excited to get out of this small town because everyone knows everyone and it's, I, I've had enough of it. I'm excited to move on and just kind of figure out my life with, by myself, 'cause I do lean on my parents [00:23:00] still, especially my mom because of her being a nurse.

She's been really helpful with this. But I, um, I'm excited. I feel confident that with what I got with the single dorm and the AC, that I will be good. And I know if I needed anything else, they have a really good disability center and I can go and ask for more.

Jill Brook: Well that's fantastic. And on hot days you might be really popular.

Alici'a: Yeah.

Jill Brook: Oh, that's great. So is there anything about POTS that you wish you had known sooner?

Alici'a: Yoga doesn't help.

That is the first thing that everyone would tell me. Yoga. Do yoga. It, it yoga's not gonna cure you. It, it's not gonna make it just disappear. Yoga's good, but it's not gonna take this away. Uh, I wish that I was told that it does get better and I wish that I would've believed [00:24:00] it because

it was a very dark time, and now I am able to live life a decent amount, like normal. I, I have a job, which can be rough at times, but even being able to have one is enough for me to be proud and happy.

Jill Brook: Yeah. Um, I know everybody's like wondering, okay, what is, what is your job? And then how are you able to manage it with POTS?

Alici'a: So, I originally started out in retail and then school had conflicts, so I left that. I'm now a busser, which with POTS I do not recommend. It is very hard physically, just because of the up and down and having to go through the kitchen or next to the kitchen, it gets hot. Thankfully the place I work at is very accommodating.

They'll let me take breaks outside, sit down. I can have water at all [00:25:00] times. I can get something to eat if I need to. The people I work with are great. And then I will soon hopefully have a cleaning job. Not sure how that will go, but hopefully, well.

Jill Brook: Yeah. That's fantastic. And so do you feel like this whole experience has taught you any life lessons?

Alici'a: Yeah.

Be grateful for what you have because you never know what's going to happen. Because you don't think about having the ability to go to theme parks taken away, or certain foods, or just even being able to get outta bed every day. And then when something like this happens, you are just out of your mind like losing it.

Like, what, what is going on? Why is this happening?

Jill Brook: Yeah. Yeah. That's great advice. Um, so as you head off to college, do you have anything in particular that you're interested in going [00:26:00] into as far as subject matter? Or are you gonna wait and see?

Alici'a: So, I, uh, will graduate with a bachelor's in science. I'm majoring in biology. I want to work with animals. Since I was young, I wanted to be like a vet. But now I wanna work with a broader spectrum of animals. So I wanna go into zoology 'cause then maybe one day I can go to work as a zookeeper and play with a tiger.

I just, I want something with animals and that I love.

Jill Brook: Fantastic. Are you up for doing a speed round where we ask you to just say the first word that comes to your mind?

Alici'a: Sure.

Jill Brook: What's your favorite way to get salt?

Alici'a: Chips.

Jill Brook: What's the drink you find the most hydrating?

Alici'a: Vitamin water.

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

Alici'a: Nighttime because it's me time. It's quiet, and I can just decompress.

Jill Brook: Where is your favorite place to spend time?[00:27:00]

Alici'a: In my bed or out on the beach.

Jill Brook: How many doctors did you see for what turned out to be POTS?

Alici'a: Two.

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

Alici'a: Three. I'm actually friends with one.

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

Alici'a: Exhausting.

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

Alici'a: One step at a time. Just take it slow. Go with the flow.

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

Alici'a: Fish.

Jill Brook: You're the first person to say that for sure. Who is someone that you admire?

Alici'a: My mom.

Jill Brook: Do you wanna say why?

Alici'a: She is a very strong, independent woman and she's just a great thing to [00:28:00] admire and she's a great example.

Jill Brook: What is something that you like for distraction when you're not feeling well?

Alici'a: The Sims Four.

Jill Brook: What is something you're proud of?

Alici'a: Graduating.

Jill Brook: What is the toughest thing about POTS?

Alici'a: Not being able to do normal things.

Jill Brook: Do you have any tips or tricks for falling asleep?

Alici'a: I listen to the Hamilton playlist, but only the sad, quiet songs.

Jill Brook: Do you have any tips or tricks for getting energy when you need it?

Alici'a: Listening to something that pumps you up, watching something that does that. Or finding your best friend. Mine just gets me hyped immediately once I get in her car.

Jill Brook: Fantastic. What is a gift that you would have sent to every POTSie on the planet if you had infinite funds?

Alici'a: A, uh, card of motivation and salt and water packets.

Jill Brook: Nice. What is something that you [00:29:00] are grateful for?

Alici'a: My support system, my family.

Jill Brook: Can you finish this sentence? I love it when...

Alici'a: I'm having a non flare day.

Jill Brook: I hate it when...

Alici'a: I'm having a flare day.

Jill Brook: Have you ever had to lay down or sit down in a weird place because of POTS? And if so, where was the weirdest place?

Alici'a: I have had to lay down on the floor in Barnes and Noble near the horror books.

Jill Brook: And can you finish this sentence? People might suspect I'm a POTSie when....

Alici'a: My legs turn purple.

Jill Brook: Okay. I have just a couple more questions. Is there anything you wish more people understood about POTS?

Alici'a: That there is a very small chance it goes away. It's not something that can just be cured immediately and stopping your meds is not gonna help. [00:30:00] Maybe eventually, but if someone's like in your family and just tells you, stop your meds, they are not a medical practitioner. They're not your doctor. They aren't you.

They don't know your body. Do not listen to them.

Jill Brook: Did you learn that the hard way?

Alici'a: Yes, I still have to learn that the hard way.

Jill Brook: Okay. Oh and if there's a fellow patient out there listening who's having a really, really rough day, do you have anything you would say to them?

Alici'a: My, the thing I hate the most is it gets better, but it genuinely does. You can do it. If I was able to pull up my big girl pants and graduate and pull myself out of the hole, you can too. It, it's a lot of work. It's hard. You know, you might break down, you might cry. That's okay. 'Cause it's not easy, it's not fun, but you can do it.

Jill Brook: Awesome. Well, Alici'a, thank you so much for sharing your [00:31:00] story and your insights with us. We so appreciate it and I know that everybody listening is just wishing you all the best going forward. Good luck at school and with everything else.

Alici'a: Thank you. Thank you for having me.

Jill Brook: Okay, listeners, that's all for today, but we'll be back again next week. Until then, thank you for listening, remember you're not alone, and please join us again soon.