Understanding POTS with Liz

Liz Gillie (: 00:01

Welcome to Besties Unfiltered, the podcast where real women share real stories. I'm Liz, and each week we dive into the authentic conversations that help women connect, build community, and feel empowered. Whether it's overcoming challenges, celebrating wins, or simply sharing the ups and downs of life, we're here to support one another, no filter needed. Grab a seat, grab your bestie, and let's get to it.

Liz Gillie (: 00:23

Hello, hello. Today we are going to be answering some of your questions about POTS. It's just me here. In the future I have interviews lined up to discuss other forms of dysautonomia as well as other forms of chronic illness like autoimmune issues. I'm really excited about those. I'm also hoping to host a panel of women with chronic illness.

just because I think it's so fascinating all the different ways that it can present and the different experiences that we can have with it. But today you just get me. So I'm answering some of the questions that I've had about POTS. First things first, what is POTS? POTS is an acronym. It stands for, let's hope I don't mess this up, Postural Orthostatic Tachycardia Syndrome, which is a really long thing that basically is a condition

causes a whole bunch of symptoms when you transition from lying down to standing up. It is a condition that causes the autonomic nervous system to malfunction. What is the autonomic nervous system? It is all the things your body should do automatically, like breathing, blood flow, blood pressure, digestion, your heartbeat. It includes things like the dilation and constriction of your pupils.

basically controls the network of nerves that do all of the things that your body uses to function. So what do the pot symptoms look like? And this is where I think it's really important to note, not everyone is going to have every single symptom. Some people are going to have just a couple. Some people are going to have all of them. Some are going to experience one more than another. This is pretty typical in chronic illness, but I just think it's important to know it's not just

standing up and getting dizzy. So I have this list here. Here are the symptoms. Elevated heart rate upon standing by at least 30 beats. I would say this is one of the most common symptoms for diagnosing heart palpitations, chest pain, air hunger. my gosh. Okay, side note, that is a huge one for me. Air hunger is when you feel like you can't get a good deep breath. When I was like 17,

I actually started complaining a lot about this, that I felt like I couldn't get a deep breath. And I was diagnosed with panic attacks and told to just stress less. Around the same time, I started having some vertigo episodes, we thought, like I would get a little bit dizzy and like my vision would gray out on the sides. I would see stars that whole bit. And when I was talking with my doctor that diagnosed me, he specifically asked about when I was a teenager and I mentioned these and I said, you know, I hadn't thought about that. But now that you mention it.

These were some of the issues I had and feels really similar to now. So fun fact, probably had POTS back then, but got diagnosed with anxiety instead, which is also sadly a very common experience. OK, so air hunger, lightheadedness, presynch, syncope and syncope. So that's just like a really bad episode. Brain fog, light and sound sensitivity, blood pooling, fatigue.

And again, fatigue is one that like, I always roll my eyes at a little because you hear fatigue and it's like, everybody's tired. We're moms, we're tired. But this is, in my experience, it's the level of fatigue where I can't keep my eyes open any longer. I take a nap and I accidentally sleep for three and a half hours. Or the thought of having to walk out to the kitchen makes me want to cry because I'm so just bone tired. So that's a...

That's the kind of fatigue we're talking about here. Blurred vision, tremors, issues regulating temperature, digestive problems, excess or lack of sweating, another super fun one, nausea, headaches, chronic aches and pains. So a common one that you'll hear about in POTS is coat hanger pain, that pain kind of from your neck and shoulders and across in the shape, kind of the shape of a coat hanger where it would be.

on your back and I often get that when I'm standing for a long period of time like washing the dishes That's where I really notice that coat hanger pain. Dizziness and heat intolerance. So super fun things just because you experience one of these things doesn't necessarily mean that you have POTS or dysautonomia. But it also doesn't not not mean that you have that.

Okay, so what is happening with POTS? A person without POTS, their blood is pumping normally and reaches the entire body regardless of what position you're in. So in a normal, healthy body, when you stand up, gravity is going to pull your blood down, right? Your heart rate might kick up a little bit, but your body is going to say,

We're standing up. We need to do the work to get the blood back up to the brain, blood and oxygen to the brain. In a person with POTS, our nervous system and heart are not doing that correctly. So we're not getting blood to the brain when standing. The blood vessels aren't constricting properly. And in an effort to kind of alert the body like, hey, we're not doing this. Your heart rate will kick up to try and compensate for it and then is beating faster than it should.

And that's where it starts to really impact a person. And it can vary a lot from person to person. Some people might have mild symptoms and some people might be completely disabled. It can impact people's ability to do those simple everyday tasks like shower, cook, drive, exercise, et cetera. As of right now, what we know or what studies have shown, around 25 % can't go to work or school. 60 %...

are told that it's all in our heads. The average diagnostic delay for a patient is five years and 11 months. 50 % of patients are forced to travel over 100 miles to receive treatment. 75 % have been seen by at least one physician who didn't know what POTS was. Patients see an average of seven physicians before proper diagnosis. There's an average of nine emergency room visits prior to diagnosis.

34 % of us had to suggest POTS to our doctors ourselves. Oof. Those are some rough statistics. There is no cure or official treatment for POTS. There is no approved medication for POTS specifically. However, there are medications that some use to control the symptoms. So just to be clear, POTS is a chronic illness with no cure.

Some of the things that we can do that help are increasing fluid intake, eating smaller meals and increasing sodium, trying different medications. Some people have had a lot of success with IVE, saline infusions as well, but many people struggle with the lack of treatment. So that's kind of a brief overview of what POTS is. Now I'm going to answer some of the questions that you guys have had.

about pots.

So how did you know that you had POTS? I am privileged in this area because I have a family member that not only has POTS and other forms of dysautonomia that go along with it, that's also a pretty common thing is to have more than one chronic illness with POTS.

I'd heard her talk about her experiences. She does a lot of advocacy work and is very open about her diagnosis. So pretty early on I noticed that my heart rate was a little bit high when I would exercise. It was probably the first thing I noticed. And it was one of those things where it was on my radar, but also I just had a baby and I had weight to lose. And I kind of just kept being like, well,

t generally OK. In January of: 2024

I felt like I never fully recovered in the sense that my immune system just seemed really down. I got sick multiple times, felt really run down all the time. And it just got worse and worse throughout the year. And I thought, OK, I'm going to bring it up to my doctor. So I brought it up to my doctor in, I think it was the end of October and just said, you know, I'm noticing

when I take a hot shower or a bath or when I raise my arms above my head, whether it's washing my hair, shaving my armpits, trying on clothes, just standing up. I see a lot of stars. My vision kind of goes gray. I'm a little bit dizzy. I get nauseous. My doctor's response was, well, you have lower blood pressure, so just stand up slower.

I was like, well, I'm sorry. No shit, Sherlock. Of course I'm going to stand up slower. You think that hasn't occurred to me? No. I'm bringing this up because it is so bad. Like, this is not working for me. So walked out of that appointment feeling pretty crappy. And at that point, I knew I needed to find a different doctor that would actually work with me to find a solution. I do think it's worth noting as well with this doctor.

asked for lab work and was told no, she didn't take my blood pressure or heart rate or anything. A lot of doctors are not well educated on POTS, so it's a little bit of a fine line there. want to give some grace to her for not recognizing it. At the same time, she refused my lab work. And if she would have inquired a little bit more or taken

a little bit of effort to ask some more questions, get to the bottom of some of this. There were definitely some red flags that were just overlooked, including the fact that in addition to POTS, I do have hypotension and that has been untreated and there's not really an excuse for that.

Let's see here. So that's how knew I had POTS. What kind of symptoms did I have? So I mentioned really, think raising my hands above my head is where I really saw the most symptoms. One of the things that was listed on kind of the general list was.

excessive sweating. And when I first read that and I was going over things, I was like, I don't think I have that. Like, I'm not really a very sweaty person. And then all of sudden I realized that part of my avoiding putting my hands over my head was trying on clothes at stores. And it wasn't like, I get really tired and out of breath when I try on clothes at stores. I mean, I kind of do. But it was because I would get so hot and sweaty.

and it was like smelly sweat. And so I really started like buying clothes and trying them on at home where I could sit and take breaks and then just return anything that didn't work for me. That should have been a red flag to me a lot sooner than it was, but I basically started making accommodations for myself without even fully recognizing it. So that's a big part of it.

After that doctor's appointment where I felt kind of dismissed, wasn't even a full week later, I had a morning where I got out of bed. was getting the kids ready for school and I just all of a sudden got super warm, super nauseous, dizzy. And it was kind of this moment where I remember I was just thinking, am I going to throw up or am I going to pass out? Like what's about to happen? And it was crazy cold outside, like negative double digits. And

I went and sat outside in like a tank top and shorts for probably two minutes to try and cool down, drink some liquid IV and a water bottle real fast. Like I knew, I knew I needed to do something and then lay down and elevated my feet. One of the parts that I think was so scary about that is it does feel like you're in that moment because you're like, something is so wrong. And yet,

I didn't say anything to anyone in my family, despite every single person in my family being in the house.

I realized after laying there, I sent the kids out, like the kids are pretty self-sufficient in the morning. So they leave for school, Jimmy leaves for work. I was absolutely masking some of what was going on because I don't know why. And then laid there for about 45 minutes and it totally passed. Felt totally normal and fine after that, just really tired. And I was talking with the family member that

has pots and she pointed out that when you have an episode like that, syncope, when that is happening, your brain is not getting the oxygen it needs. So good decisions are not being made. And that was very evident looking back where I'm like, that is terrifying. Why did I not say anything? What if I had passed out and hit my head? Like, what?

So later when Jimmy got home, I had to be like, hey, quick conversation. This happened. I was super nauseous. My vision grayed out on the sides, like blah, blah, blah. And also you were here and I didn't say anything. Super fun. Showering is probably the trigger for me right now with washing my hair. I did.

have to get a shower stool and I have a lot of big feelings about that which part of it is I don't want to have to use it and then the other part of it is guilt over feeling that way because I sit here and I wonder is it my own internal ableism coming out? Like why am I so resistant to this? I don't think I would judge another person for this so why am I being so harsh on myself? So it's like a lot of big feelings. I avoided, like I bought it.

And I will admit, I bought a cute one because obviously, and it sat in my shower and I refused to use it. And now I've used it a handful of times and it really did help a lot. And so I am becoming more comfortable with that, but it's just, I don't know. It's a, it's a whole thing. Okay. how did you get diagnosed? Well,

When I went to my doctor's appointment, I filled out all the paperwork ahead of time. I did not say to this doctor, I think I have POTS. I just described the symptoms and left it up to him. I did take Jimmy with me after how dismissive my primary doctor was. I wanted to have someone there to help advocate as well as just witness if I did get gas lit. So

And it ended up being really good that he was there. He was able to give some input on things he had noticed. My doctor walked in and immediately said, I have some ideas, but I'd love to hear you describe what you've been experiencing. He asked about, know, when you were a teenager, did you notice any of this? You know, talk to me about some of these other things. And then he said, have you heard of pots? And I said, yes, actually, I've wondered about that. And said, OK, so we're going to do the tilt table test.

It's kind of called like the poor man's tilt table test because it's not like an official POTS clinic test. The research is coming out that it's just as effective as a POTS clinic and it's far less strenuous on the body. So personally, I don't know if I would have been willing to go through like an official POTS clinic to get tested just because it is so much. It's just a lot and I don't know that it's really worth it.

So basically poor man's tilt table test, you lay down, they take your vitals, you sit up, they take your vitals, you stand up, they take your vitals. And this is like a 10 minute process and they take your vitals every two minutes. And they just check to see what's your blood pressure doing, what's your heart rate doing, those autonomic nervous system, right? What is happening here? And if you have an increase in heart rate by more than 30 beats per minute,

That's a pretty good indicator of POTS. So in my case, I had that. Something that was really interesting, and this is where I do feel a little frustration towards my primary care doctor, is that they found that my blood pressure, first of all, like my resting blood pressure was like 80 over 60. Super low, that's not healthy for anyone to be that low. But when I stood up,

My blood pressure actually increased. So what I had been told is, your blood pressure is already so low. So when you stand up, it drops and your heart rate kicks up to try and compensate. But in reality, that was not happening at all. My blood pressure actually increases when I stand. It does start to decrease the longer I stand, which is why, in addition to POTS, I do have orthostatic hypotension. Yeah, I have hypotension.

Which is not uncommon with POTS. Really with POTS, your blood pressure, you could have high blood pressure, you can have low blood pressure, you can have perfect blood pressure. Sometimes there's this whole thought process of like, well, if you have low blood pressure, you don't have POTS, you just have low blood pressure. No, that's not totally true. There is like a subset of people who are just like me. So that's a thing.

So after seeing that, he was like, well, here we have it. Like, you are checking all the boxes for POTS. The thing about POTS is that there isn't one diagnostic test. It's actually a process of elimination. So after that, I got fitted with a heart rate monitor that I wore for four days. And then that helps to just check for any other, you know, a heart murmur, any abnormalities.

And then we did lab work and we tested for autoimmune hormones, vitamins, minerals, the whole shebang. I've never had this much lab work in my life. The whole gambit. And basically everything came back perfect. And that's part of what's so hard about POTS is according to my lab work, I am so healthy. I, in fact, have never had lab work come back.

so perfect in my life, but obviously I'm not healthy like I'm having some serious health issues. So that eliminated any other possibility. And then with my heart rate monitor, what came back is, yeah, you're having these heart rate increases. We also discovered at night that

I am having really high jumps in my sleep, which is not a great sign. It's often called adrenaline dumping. And obviously it's not healthy for your heart rate to be jumping. I was hovering around 52 beats per minute in my sleep. And then I would jump up to anywhere between 130 to 150 while sleeping. I knew something was off. I was having some insomnia and really bad.

temperature regulation waking up just drenched in sweat. And I didn't know anything about adrenaline dumping or that that's what was happening. But those are pretty classic signs. It was also happening between one and three a.m., which is also another pretty classic sign of adrenaline dumping. Basically, your body's just not processing things correctly. And then it's like, wait, are you dying? Let's kick up the heart rate. wait, you're not dying. OK. So super fun to go through.

Which leads into the last question. What's the treatment look like? Treatment. So like I said, there's no cure. There's no official treatment plan. It is very individualized. And what works for one person might not work for other. However, generally speaking, there are some things that seem to work well for most. That is increasing fluids. I currently drink between 100 and 130 ounces of water a day. Increasing sodium.

Low blood volume can be a really big issue as well as dehydration. So for me, for years, people have been like, you need to drink more water, you're dehydrated. And I've always been kind of annoyed by that because I've always been someone that drinks around 100 ounces of water. But it turns out actually, yes, I was probably dehydrated because I didn't have enough sodium for my body to properly absorb that water. sodium is a tough one.

Right now, my doctor had me start at three and a half grams, 3,500 milligrams. I have found that four seems to generally work pretty well for me. I sometimes struggle to hit four grams. That is a lot of sodium. And you also want to be eating healthy with it. So yes, I could go to KFC and easily hit four grams of

sodium at KFC, but that's probably not going to be the healthiest diet and it's going to cause other issues if you do something like that regularly. Generally, electrolytes are going to be a better option, although you don't want to overdose on some of the vitamins and minerals that often go with things like liquid IV. So it's a little bit of a learning curve to try and hit those sodium goals, but I have noticed a huge improvement when I do hit higher

sodium levels. I'm still just kind of figuring out how to do that. Next up would be compression garments. Compression helps so much. Yes, it feels a little old lady sometimes. It makes me think of the little old ladies you see when you're at the airport and they've got their dresses on with their knee high compression socks. That's basically me now only I make sure that nobody can see my compression socks.

Which works well in the winter because, you know, we're wearing pants or I'm wearing tight, I'll wear tights over my compression socks. I am not quite sure how it'll work in the summer, but compression leggings also are really helpful as well as anything across your abdomen. Sometimes the abdomen ones bother me a little bit, feel a little too tight or like squeeze my ribs too much. But generally speaking, compression can really help with circulation.

which helps your autonomic nervous system. And then of course, diet smaller meals can help five to six smaller meals versus two to three big meals. Less carbs, particularly those simple carbs. Kind of focusing on protein first seems to be something that's working well for people. There's no official diet.

But from the amount of time I have spent researching this, ala, I don't know, pots and dysautonomia read it, which honestly is like such a helpful place to go. It does seem to be like really helpful for people. And it's something I've been trying to prioritize is protein first thing in the morning. A lot of people encourage abstaining from frequent alcohol and

Hot seems to be like hit or miss. Like some people swear that THC helps. Some people are really opposed to it and say it makes their symptoms worse. So again, I think it's just really individual. Same thing with caffeine. Some people feel like it makes their symptoms worse. Some people feel like it makes their symptoms better. So I don't know. I think the hardest part is having to have a little bit of that trial and error just to figure out what works best for you.

And then of course there's medications, saline bags, there's several different beta blockers people use or blood pressure medications. Personally, I take a blood pressure medication that helps raise my blood pressure. It is a vasoconstrictor. So it increases blood pressure and decreases heart rate. Has some weird side effects. The weirdest one is scalp tingling.

It feels like one of those metal head massagers all the time. But I'm kind of hoping that means that because it's stimulating the hair follicle, that's what you're feeling, the constriction. I'm hoping that means that maybe my hair will grow faster. Maybe, I don't know. I might be crazy. We'll have to see where I'm at in a year. so I take that throughout the daytime.

And then I take a beta blocker at night to help with some of that nighttime adrenaline dumping that's going on. I did notice a huge improvement when I added the beta blocker and I was really apprehensive about it because typically people use this beta blocker to decrease blood pressure. So that was a little bit scary for me, but it's worked out pretty well so far.

We'll see, I'm not in a place where I'm looking to get off medication. Honestly, I don't feel healthy enough for that right now, but I do hope that in the future I might be able to drop at least one of those medications and be able to maintain a little bit more through just lifestyle changes. The last one is exercise, which is kind of a tough one. There's a lot of evidence that a little bit of exercise can help.

and improve your POTS. The problem is that most people with POTS have exercise intolerance or your heart rate is going crazy just from standing up. So now imagine what it does when you try to walk on the stair stepper or on, actually the stair stepper is a great example. Stairs are really hard. They're probably the worst part. And so for me,

I know if I get on the stair stepper, my heart rate's gonna be at least 165 going at a snail's pace. I can do the treadmill. I particularly like the recumbent bike. Anything seated tends to be a little bit easier on the body as well as swimming because it takes pressure off of your body and lessens the odds of blood pooling. So it's...

It's kind of a fine line. You can overdo it really easily and then you're going to pay for it. But also moving your body is good for you. So it's kind of that fine line. And again, it's just really individual. Hopefully this helps answer some of the questions you guys have about POTS. If you have a friend or maybe you yourself have a chronic illness and you would be interested in being interviewed on the podcast or being part of a panel of chronic illness girlies.

Please reach out, I would love to connect with you and share your story and your thoughts. As always, feel free to like and subscribe and I will see you guys next time.

Liz Gillie (: 25:15

Thanks for tuning in to another episode of Besties Unfiltered. I hope today's conversation left you feeling inspired and connected. Remember, we're all in this together and there's power in sharing our stories. If you loved today's episode, don't forget to subscribe, leave a review, and share it with your besties. And as always, keep being real, keep being you, and I'll catch you next time. No filter, just friendship.