POTS Diaries with Sam, sharing her POTS and seizures on TikTok

Jill Brook: [00:00:00] Hello, fellow POTS patients, and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Sam. Sam, thank you so much for joining us today.

Sam: Thank you so much for having me on. I'm such a fan of the podcast. I'm excited.

Jill Brook: Oh good. Okay. Well you probably know the drill. For starters, we just wanna kinda like get to know you.

Sam: Yes. I'll do a little quick intro. My name is Sam. I am 24 years old and I have been dealing with POTS. This is, it's almost a year and a half now. This right around April this time last year was when I first got in to see a POTS doctor, so this is very full circle. Yeah, and I have just been dealing with POTS through that process, realized that I have hypermobile EDS, so I've just been dealing with those two things for over a year now, so I'm excited to come on here and talk about it.

Jill Brook: Oh, we're excited [00:01:00] to hear about it. Let's hear a little bit more about you. What are some things that you're good at if you have to brag about yourself?

Sam: Well, I was a psychology major in college, and my dream, if I can get my POTS symptoms under control enough, would be to go to grad school for that. And I honestly think, although I wouldn't want to go through this whole health struggle again, it has definitely opened my eyes to how health and psychology, sort of the physical health and mental health components overlap.

And I definitely want to incorporate some sort of physical health focus into post grad options. So that's been kind of a cool intersection. But yeah, I love psychology. I also am a fan not just of this podcast, but I do freelance work for a great mental health podcast as well in my free time. So love this whole world.

Jill Brook: That's cool. I think you said you're, so, you're an [00:02:00] editor for a podcast that, like, does it help people with mental health issues or tell us

more about it?

Sam: Yeah. The podcast is called She Persisted. It's amazing. The woman who runs it is even younger than I am, which is nuts. She's so inspiring as a person. And yeah, I edit the episodes. I help promote them on social media. It's been so fun. It's been a great way that I can do some work at home without, you know, since I'm not able to navigate a full-time job or grad school right now, it's been a really fun way to keep a little busy at home.

Jill Brook: So we usually like to ask people what they were doing in the year before POTS showed up and kind of what did your life look like?

Sam: Yeah, it looked very, very different to things now. So I had just graduated college in the spring of 2023 and my best friend from college and I thought it would be really fun to drive [00:03:00] across the country. So we went from Rhode Island to right near Santa Barbara, California, and we wanted to live in California for at least the summer, if not the fall and onwards.

And this is a very long story on how I ended up with a POTS diagnosis, but I'll keep it as short as I can. Basically, once we got into California, we were there, I think for almost a month at this point, and I started to feel really intense, lower back and hip pain in my right hip. And so it got so bad I went to the emergency room one day to do an X-ray, make sure I hadn't, I don't know, fractured it or something.

And I'll never forget the look on the ER doctor's face because she sort of was initially very dismissive of it and was sort of like, go to urgent care, or like, go, go to another doctor. You don't need to be here. And then she got the imaging back and was like, oh gosh, you have this massive lump in your hip.

There's sort of this [00:04:00] lesion. I don't know what it is. I think you need a biopsy to see what's going on. And I went to a bunch of doctors in California. For some reason, the way that the lump was positioned in my bone, none of the doctors there seemed to feel like they could access it in a regular biopsy and that it may have to be surgical.

And so that took me from California to Connecticut where I ended up getting a surgery to remove it and a bone graft and a biopsy kind of all at once. And thankfully it was not cancerous. It was benign, which was great, but it had sort of broken open my hip, and so I did that surgery. The hip started to feel a little better.

The back did not. More scans later we've found that a bunch of the discs in my spine had slipped out of place, and one of them was a fully ruptured disc, so did lots of different treatments for that. Really wanted to avoid surgery. So I [00:05:00] tried a bunch of cortisone injections. I did PRP, which ended up being the thing that helped, but just I think after all the

local anesthetics and the bedrest and the stress on my body, woke up one day with POTS and that was it. So it was a very medical drama filled story of how I ended up with it. But I started to get the symptoms of POTS around December and January going into 2024, and then that has been my life ever since.

Jill Brook: Oh, did you at least have a blast on your road trip before all this started?

Sam: Oh, the road trip was the best. It was so cool. We drove through Nashville. We went to Fort Worth, Texas, which looked like it was out of an old movie set. It was so fun. And then California is so beautiful. I had never been before, so it was amazing while it lasted, for sure.

Jill Brook: Oh [00:06:00] shoot. Okay, so your POTS symptoms came on.

Did you get a quick diagnosis or what did you think was happening? How did that turn out?

Sam: Yeah, you know what? At the time, I think I thought it was a really long time until I got a diagnosis and now having kind of been through it and seeing other people's stories on social media, I think all in all, I'm actually pretty lucky with the timeline. So I started feeling the symptoms, like I said, sort of beginning of 2024, and then had my first

POTS appointment at the end of April. And then the doctors that I see, they're really amazing and they're very thorough with their testing. They do a lot of tests both to diagnose the POTS and to rule out other things that could potentially be causing symptoms or making it worse. So by the time I got diagnosed, it was probably mid-June, I would say.

But definitely went through the process that you hear from [00:07:00] so many people with POTS. Where you go to, you know, a neurologist, you go to a general practitioner, you see the ER doctors, and they're all basically saying you have anxiety. I don't know what's going on. Go see a therapist for your mental health kind of thing.

So definitely not the easiest journey, but also I feel lucky in a lot of ways because there's some people that it takes decades. I mean, I've heard from some people who are in their forties and fifties and it's, they've had this their whole lives and this is sort of the first time they're getting answers.

So yeah, I wish it were easier for everyone. But yeah, I think that's kind of how it ended up for me.

Jill Brook: Okay, so how bad was your POTS at its worst, and how much did you find that was able to help it?

Sam: Yeah. Well, I would say my worst symptom far and away are these sort of POTS seizures that I call them. There's so much discourse over, you know, is it non-epileptic seizures? Is it [00:08:00] convulsive syncope? For me, my episodes, definitely, I call them non-epileptic seizures. They're just very prolonged convulsions.

I'm half conscious. I can't speak. I can't see at all. I can hear sort of things in and out. I would say they usually last 20 to 40 minutes. Yeah, they're horrible. I don't want anyone to have them. And that was really my first POTS symptom as well. And when my POTS was at its worst, I was having them every single day, sometimes multiple times a day.

And so even if I had the energy to like go out and grocery shop or see a friend, I just didn't wanna leave the house 'cause I really did not wanna have one of those episodes outside. I knew it would freak people out. They would call 9 1 1, all these things. Thankfully now that I am on medication for my POTS, I'm on midodrine, which I take four times a day and then I'm taking a lot of [00:09:00] salt, drinking a lot of water,

working my way up through the physical therapy program. I'm not having them every day anymore, which is amazing. It really, really makes a difference 'cause they just wipe me out afterwards as well. So yeah, I would say between February and July, I would say all those months I was having them every day.

So that was the worst stretch of it for sure.

Jill Brook: Wow. So that's interesting though that midodrine and salt and fluids helps. Does that imply that your non-epileptic seizures are pretty much caused by lack of blood going to the head?

Sam: That's a great question. I think you're exactly right. I think that's the thing, because I post about these online and I get a lot of comments from people who are like, you know, are you sure this is an epilepsy? And yes, I did the test with neurologist, rule out epilepsy, and then I, I get questions are about are these psychogenic?

Is this related to the neurology [00:10:00] of your brain? And it's like, these started when my POTS symptoms started. They're my worst POTS symptom. They're treated with POTS protocol. I've done the tilt table testing that shows when my POTS is flaring, I don't get the oxygen to my brain. So yeah, I really do think that's what causes it and

there's just really not enough resources out there that tell you if this is happening to you, this may be the cause, which is the oxygen. This could be due to POTS. It's normal for POTS patients, unfortunately. You know, it's not a medical emergency, but it's a terrible symptom. See a doctor for this. I, I just wish there were more, there was more information out there to let people know,

'cause when this first started happening, it was really, really scary and I, you know, was assuming the worst and I didn't know what to do, especially after my neurologist said I don't know. Go figure it out. I am out of ideas. So yeah, that's definitely one of [00:11:00] my biggest things that I'm always talking about.

Sometimes excessively online, is like if you have these, this really could be POTS. It's not just from past trauma. It's not just, you know, it doesn't have to be epilepsy. Really look into this avenue for it.

Jill Brook: Yeah. Okay. So you just mentioned something that, you talk about this online. Can you, can you

talk more about your role online and what you do there?

Sam: Yeah, absolutely. I am still getting over being shy to post videos online, even though it's, I'm about, I don't know, maybe six months down the line of posting videos. But truthfully, I just wanted to, even if just one person saw one of my videos specifically related to my non-epileptic seizures, I would be happy.

That's what my thinking was when I first started posting because I found out about POTS through TikTok. I wish I'd found out through a doctor or you know, a medical professional. I found out through TikTok [00:12:00] and once my POTS doctor, who is amazing, you know, I, it took me months and months and months to figure out what these seizures were and once she said, you know, this is really normal, I see this

all the time with my POTS patients, I started to see more about it online. I feel like the algorithm was listening and those videos of people talking about it just brought me so much comfort because I genuinely thought I was the only person in the world that this was happening to because I was doing Google searches every day.

I was on WebMD like you would not believe, and just nothing. I didn't see a thing, and so I just think it's a source of sanity if nothing else, to kind of have an online community that you can turn to. I always give the caveat, like obviously don't diagnose yourself purely based on what you see online, but definitely it's a place where you can get support, you can get validation.

The other day I'd been having, I call this one of my health side quests. I now am in the process of [00:13:00] getting treated for MALS. And so I've been able to go on TikTok and be like, Hey, anyone else have MALS? What did you do? What doctor did you see? And it will give you answers quicker than any other forum, and with very few exceptions, just with more love and kindness than any other form I've experienced.

Jill Brook: Do you wanna remind people quickly what MALS is?

Sam: Yes. So MALS is, and I'm still learning about this, so forgive me if I mess up some of the terminology, but it's basically where your celiac artery is really, really compressed by one of your ligaments. For whatever reason, it's super comorbid with people who have POTS and yeah, so I've just been having very intense stomach pain after eating, lots of nausea.

I, I saw someone describe it sort of feeling like there's a boulder in your chest after you eat like sort of under your ribs and that is what it's like for me. And so of course, because a lot of people with POTS have MALS, I've been able to sort of turn to the POTS community online [00:14:00] and get some answers.

I've had so many kind people in my messages telling me their advice and how they got diagnosed. So it is just, I'm definitely not posting online to sort of be an expert on POTS by any means, but sort of just to get the dialogue going and get people together in one place. It's been really fun.

Jill Brook: Well, I, I like how you described it, that basically you can get the information with a lot more kindness and compassion

than maybe anywhere else. And I have to admit that lately I have been finding that using either ChatGPT or some of the other large language models, they are incredibly knowledgeable about all of this stuff.

Sam: Oh really?

Jill Brook: If you one of the extra tools, like the Deep Research, they can look at every medical article ever published about this. And it's also a lot kinder and gentler and nicer about everything than

at least at my doctor's office. And so it's kind of [00:15:00] wild. Like I, I don't wanna encourage people to like, you know, get all their information from, from these tools, but

it is....

Sam: It's a starting point, right? I mean, I, when I tried to go the standard doctor route on my stomach pain, and I was two weeks away from getting my gallbladder removed before I discovered it could be MALS. It's like, the internet can be the place that you go to to get at least the initial ideas and the names of doctors who might understand POTS.

And then you can go from there and then, you know, hand over control to the doctors in that sense. But, oh my gosh, I mean, without like the complex knowledge you need to have as a doctor to be like, wait, she is hypermobile and she has POTS. I should look into MALS because that's so like, and in a lot of ways I don't even blame doctors 'cause that's, a lot of them weren't trained for that.

But it's like you kind of need to know where to look. And I, I wanna post a [00:16:00] TikTok now about using ChatGPT 'cause that's

so funny. I hadn't heard to check that.

Jill Brook: And I know that everybody's worried about it hallucinating. But my husband, who's like a high tech guy, taught me to, you know, if you are wanting it to tell you about a literature, you can either feed it the literature first and have, have it, you know, base, base, all of its answers on that, or you can make it quoted back to you so that you make sure that

you are, you know, getting everything.

And then this Deep Research option is just nutty cuckoo. Like I, I'm pretty sure that like you could go back and do a PhD in about a day with Deep Research . So tell us more about the videos you put out. Like how long are they, what kinds of topics do you tend to put out? What is your goal?

Sam: Yeah, I mean, I like to do a mix. Sometimes I'll just do like the funny videos and use the trending audios and make them apply to POTS or whatever else I'm talking [00:17:00] about. I think it's important to do a mix of funny and serious videos 'cause life feels too serious a lot of the time, if you're in the depths of a chronic illness.

It's nice to just kind of laugh about it sometimes. But I do, if I'm really sitting down in front of the camera and talking, I do really like to talk about, I would say 50% of the time I'm talking about non-epileptic seizures, and the other part of it, I do like to share tips and tricks. I see

also an amazing POTS nurse who is just full of POTS life hacks that I never would've come across on my own. And I sort of feel like, because I'm so lucky to see these amazing professionals that I wanna just sort of regurgitate information that they give me and put it out there. And of course not tell people, oh, do my exact treatment protocol,

'cause you do need to see a doctor for that. But little life hacks here and there. So I made a TikTok the other day. This nurse [00:18:00] that I mentioned that I saw, told me about this three day rule with POTS where she said, if you do a lot of exercise or you push it too hard or you forget to take your meds or drink your water on a certain day, you're not gonna face the consequences the next day

usually. You're gonna face it three days from now. And so that was just one of those little things that you don't know about at all unless you know the right people. And so that sort of thing, I'm like, oh, you're amazing. I love that tip. Let me pass that along and spread the wealth type of thing.

Jill Brook: Yeah, that could save you a lot of time trying to figure out what's going on.

Sam: I am always on my notes app trying to calculate and symptom track, and I'm like, wait, I was feeling bad this day. How come I'm feeling good, this, it's just, it takes you a lot of time to just have those little tricks of the trade like that.

Jill Brook: Very cool. And so how functional are you now?

Sam: Good question. So I would [00:19:00] say, I know it depends, I've heard from a lot of people whose symptoms are way worse in the summer, like in the heat if you live somewhere where you experience all four seasons. For me, I'm the total opposite. So I sort of was trying to hunker down and get through this winter at sort of a more limited capacity and then I wanted to try to kick up my,

kick into high gear and do my physical therapy programming to get me into better shape. But then the MALS hit and sort of, I'm back to square one a little bit in terms of POTS symptoms. So I would say I'm definitely in a better place than I was when I was unmedicated, hadn't seen a doctor. My seizures are down.

I'm not having them every day, which is such a win. Am I able to work a full-time job? No, not right now. I do really think that, you know, potentially I'm gonna have to get a big surgery for MALS soon, so that'll be a bit of a step back. But I'm really hoping once [00:20:00] that's behind me, that I can go through the motions, get back into shape, and hopefully move somewhere with warm weather all the time and try to do a full-time job at that point and see how that goes.

So, I'm getting there. There's just been sort of the odd setbacks here and there, but I don't think it's gonna be impossible for me to live a life I wanna live, even if it may look a little different than how I'd expected it a few years ago.

Jill Brook: Can I ask a little bit more about the MALS, because did it

come on suddenly or gradually? And what makes it, I understand that it is blood flow getting blocked off,

but I don't understand it coming on suddenly. Or even if it's coming, like you're

fully grown, right? Like you're not changing shape, you're

not growing taller.

So why all of a sudden?

Sam: That is the question of the hour. I'm, I'm trying to figure that out myself. So my [00:21:00] POTS doctor who went over my scans initially sort of wondered if I'd had this since birth and just for whatever reason, it's reached the point now where it's becoming a problem. And it's actually kind of fascinating. I mean, if it weren't fascinating, it would be kind of a little scary, but I just think it's cool.

The other blood vessels around my celiac artery have grown into different shapes, and instead of connecting purely to the celiac artery like they're supposed to, they've formed connections with one another. So they've like sort of rerouted and everything around my celiac artery has sort of changed course, which makes me think, okay, yeah, this has been going on a while,

'cause that sort of thing doesn't happen overnight. It's hard to parse out because I also am hypermobile and so my ribs are always flaring and moving in the wrong positions. And so I do get pain around there from time to time. I definitely have always [00:22:00] struggled with stomach issues on and off my whole life and just sort of assumed, oh, maybe I'm lactose intolerant or something.

I think it's just at the point now where the surrounding system has become kind of overburdened and like my body's been compensating for it for a while, and it's just for whatever reason, like sort of hit the threshold where it can't tolerate that anymore. I honestly, it's so interesting, I always wonder like,

how exactly did my POTS start? Has my EDS pain been here my whole life, or was it really truly just bad growing pains? I always wonder the causes of these things, and I never fully understand it.

Jill Brook: Yeah. And I mean, so this whole thing started with, it sounds like with a benign tumor in your hip?

Now, was that completely unrelated and that was, that

was just bad luck?

Sam: I wonder that too. I mean, you've gotta wonder because it would've, [00:23:00] I think, in some way been blocking blood flow around there. So maybe I was always just kind of more susceptible to circulatory issues and yeah, but it, I, it honestly in some ways I think was a red herring to the worst issue at the time, which was my

lower back being all messed up. But it is funny, I mean, I've done so many scans at this point of my body and they always find something new and weird, so I'm sort of

just like a passenger to it at this point.

Jill Brook: Well, okay. I've noticed that you have been so smiley through this whole thing, which I really give you credit for. How do

you

cope with all these challenges and life changes?

Sam: You know what, this is such a cheesy and cliche answer, but sometimes the cliches are there for a reason because they're true. And I do just think that when you kind of hit your low point like that, you really can see who your support system is and what [00:24:00] that looks like. And I have just felt really lucky because.

I have a place to go to, even though I can't work full time. I'm with my parents right now and they are so amazing and so kind and supportive. I've got a great circle of friends that I love so much. My extended family is always checking in on me, always calling me. They'll send me cute things in the mail to cheer me up.

I mean, I just do feel like this time in my life has shown me how much love is around me. And so I feel like, of course I have bad days where I get upset and I'll cry or I'll be frustrated. But I think overall, I feel like I still am lucky all things considered because I do just have people I love and who love me, and I just don't think this is gonna stop me from

achieving what I'm supposed to achieve, even though maybe like I said earlier, it might look really different than what I [00:25:00] initially thought it would be. But I think if anything, this has sort of just lit a fire under me to try to reach more people and help people who are dealing with mental health and physical health and the overlap between them.

And I just, I don't know. I feel a big sense of purpose around it, which I think helps me make more meaning around what is such a random seeming series of medical incidents in my life for sure.

Jill Brook: Yeah, I mean, so the mental health angle is really interesting. So, so obviously as editor to that, you listen to every word.

Do you feel like you've learned anything important that

might benefit POTS patients in listening to all this good content about mental health?

Sam: That is a great question. I also, I listened to some great guests who come on the podcast I edit for, and I also have world's most patient therapist who is really helpful for me. And [00:26:00] it sounds so basic, but I think because POTS is such a, you know, it's so tied into your nervous system, just not overcomplicating things when it comes to your mental health and going back to the basics as much as you humanly can.

And that's hard for me. I used to be the biggest overthinker. I probably still am. Whenever I had problems, I would fix them by just doing more and running around and getting involved in X, Y, and Z and just being busy, busy, busy. And obviously now the chronic illness, it's like, no, you can't do that. You have to come up with new ways to deal with things.

And dealing with the sadness and sort of the feelings of loss that come around having a chronic illness that's so debilitating can be really hard, especially if you're trying to run from it and getting frustrated that you can't. So just, it's almost like an emotional education that could apply to kindergartners in the same way it applies to me, which is just,

[00:27:00] feelings are okay. Feelings tell you that something's going on in your body. What if you sit in them for a little bit and just let the feeling pass 'cause it's not gonna last forever. That, even though it's so simple, it kind of blew my mind to do that at first. And my body feels better now that I'm doing it,

in some ways. I'm not healed by any means. But I notice sometimes my symptom flares happen when I've been feeling a, you know, big complicated emotion all week and I've been trying to avoid it or pretend it's not happening, and my body feels the stress of that and it makes the physical symptoms worse, which then makes my mental health worse.

And it's just a vicious cycle. And so just being like, all right, this is sadness. It's happening, I'm feeling it, has been a game changer for sure. As simple as it sounds.

Jill Brook: That's great. Okay, one more question. The thing that you have in your ear, is that just an ear pod [00:28:00] or is that a Lumia

device?

Sam: Oh yeah, just my AirPods. Yeah.

Jill Brook: Have you, have you looked into the Lumia device or thought about it?

Sam: No. What is that?

Jill Brook: So it's a device that they make that sits in your ear and it looks like your earbuds

and measures how much blood is getting to the artery right there. And I wonder if in your case, it might help give you a heads up when your head is not getting as much, and you might be able to predict when one of your seizures is coming on. That's all theoretically, but you should look into that.

Sam: Okay. This is why I just love the POTS community because I had never of that before in my life. Thank you for telling me about that. I'm gonna Google that as soon as we're done talking, 'cause blood flow to the brain is like my biggest issue at the

moment.

Jill Brook: Yeah. And that's what it measures. And you might learn, you might learn ways to get it there faster or if, if,

or at least be able to predict so.

Sam: That's amazing. I have, I wear an Oura Ring on [00:29:00] my finger a lot and that's great for, it tells me when my body is really stressed, which is honestly mostly correlates with my symptom flares. But it definitely, I've never been able to use it to predict a seizure or anything like that. So that earpiece is amazing.

Jill Brook: Yeah, and the interesting thing to me is that through that they were able to determine that the blood flow to your head is not necessarily the same as your blood pressure. So you could take your blood pressure all day long, have it look normal but that doesn't mean that the blood getting to your head is normal.

Sam: That is so true, 'cause I will, I mean, sometimes I'll take my blood pressure right before an episode and I'll be like, well, there you go. But other times it's perfectly normal and I'm just so confused. So that is so good to know.

Jill Brook: I remember in my day where I would feel like all my blood was just pooling so badly and I didn't know how to measure it. So I would, I'd feel like there was none in my head, like there was way too much in my legs and I would take it on my arm, it would be normal. [00:30:00] And then I would try to put the, the armband around my calf to see if I could see pressure was there.

Not that I would even know what it's supposed to be.

Sam: Yeah. Do not try at home. Yeah.

Jill Brook: Oh my gosh. Are you up for a speed round where you just say the first thing that comes to your mind?

Sam: Yeah, hit me. I'm ready.

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

Sam: Ooh. Either shots of pickle juice or dill pickle potato chips. Anything pickle really.

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

Sam: I make my own water bottles, so I'll do water, salt, a little bit of sugar, sometimes like a fruit juice. That's the sugar. Perfect.

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

Sam: I get my most energy usually in the evening. I feel like for whatever reason, my blood flow has leveled out enough at that point.

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

Sam: [00:31:00] Ooh. I like to go to my grandma's house. She lives in Cape Cod. So I love her, and also she's near a lot of salt water, so I float in that. I feel like I've been reborn symptom wise.

Jill Brook: How many doctors have you seen for POTS?

Sam: Probably seven or eight at this point, I'm guessing.

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

Sam: Draining.

Jill Brook: What is some good advice that you ever heard?

Sam: I would say don't compare your journey and where you're supposed to be at in terms of healing to anyone else, 'cause your body's totally different. What's causing your POTS is probably different than someone else. Just do what feels good to you and that'll be enough.

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

Sam: Ooh, I chew a lot of like the electrolyte, I think it's [00:32:00] Vitassium brand, electrolyte tablets. They taste so good. They're sort of like a chalky candy. So if anyone like Smarties, you'll like those. Those are such a good, pick me up. I love those.

Jill Brook: Who is someone that you admire?

Sam: I would say I, I, I admire my mom. She's been such a strong point for me during this, and even though we're both very emotional people, she's always been like sort of my anchor and my strength during this whole process. So literally couldn't do it without her. Admire her so much, her selflessness.

Jill Brook: What's something that you're proud of?

Sam: I'm, I'm proud of my TikTok account. This isn't shameless self-promotion, I promise. But it is really scary to post videos of yourself online, especially when they're as unflattering as having a, you know, convulsive episode. I mean, that can be really scary to put that out there. So I'm glad I got over my fears 'cause I've met some really cool people and [00:33:00] talked to a lot of people about POTS because of it.

Jill Brook: Wow. Very cool. What is the toughest thing about POTS?

Sam: I think just like the sense of loss that comes with it. Just sort of grieving what you could be doing right now or what you wanted to be doing at this point in life. I think sometimes the mental stuff can be even harder than the physical stuff at times.

Jill Brook: What helps you fall asleep, if anything?

Sam: Oh, just medicine, to be honest. I take hydroxyzine at night that my doctor prescribed me. It's, I was going from sleeping one hour a night to eight hours. So it's amazing.

Jill Brook: What was that like? Sleeping one hour at night?

Sam: I mean, I feel like with POTS, you already are so brain foggy that it can be disorienting at times. And then when you add that with, you know, being awake all night and watching the sun come up, you just feel like you're walking through fog all day, like you just have no idea what's [00:34:00] going on around you. I was a zombie for sure.

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

Sam: Oh yes. So what I'll do sometimes is I'll lay down on the ground and put my legs up on the wall, and then I'll sort of just do, I don't know how to describe it, little ab lifts or little bridges. So I'll sort of just raise my hips off of the ground and sort of squeeze and hold my pose at the top and then lower my hips, and I'll do that a few times and that just helps the blood go from my feet to my chest, and that is a game changer.

I love doing that. My physical therapist taught me that.

Jill Brook: Nice. What is something that you're grateful for?

Sam: Not to sound like a broken record, but my support system, family and friends for sure. No one's been anything but compassionate and supportive, so I feel so lucky.

Jill Brook: Oh, that's great. Okay, last couple questions. Have you ever had to sit down or lie [00:35:00] down in a weird place because of POTS? And if so, where was the weirdest?

Sam: Oh my gosh, yes. This is such a POTS question. I love it. I had a seizure on the floor of a bathroom in Capital One Arena. I live outside of DC so that's like their big hockey arena. So like right in the middle of a hockey game, just convulsing in a hockey arena, I would say. But I came back. I didn't miss any goals,

I don't think so. That was good.

Jill Brook: And what do you wish more people knew about POTS?

Sam: I see a lot of misinformation about sort of just exercise and you'll be fine. Like your body's just outta shape. Exercise will solve it. And that's not the case for everyone. So just that different things work for different people, and not all of us are gonna be at a point where we can do everything in a day that we want to do, and that's okay.

It doesn't mean we're not trying or we're not doing everything available to us.

Jill Brook: [00:36:00] Fantastic. Well, Sam, we're gonna make sure to put your TikTok link in the show notes so that

everybody can find you and they can check out your videos and they can say hello and meet you if they want to.

And just thank you so much for sharing your story and your insights. We so appreciate it and I know everybody out there is pulling for you and just wishing you only the best going forward.

Sam: Oh, thank you so much. That's so nice. It's been so nice to meet you. I've loved coming on here.

Jill Brook: Okay. Hey 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.