Christine Reed talking about POTS (Postural orthostatic tachycardia syndrome)

Lainie 0:00

So welcome to love you diagnosis podcast. And today I have Christine Reed with me all the way fromDenver, Colorado,

Christine 0:23

Yeah, thanks for having me.

Lainie 0:25

Now, your diagnosis of pots is very interesting. I only heard about that last year for the first time because a friend of mines daughter was dealing with it. And so of course, me having a curious nature, I looked into it, but I'd never seen met or heard of it before this, and you are living proof that it's actually out there. So I'm gonna let you introduce what Pots is, a brief description of it and how long ago were you diagnosed with it?

Christine 0:54

Yeah, I also just heard about it last year. But I have had it my whole life, and it has affected me my whole life. But I just didn't know that something was medically wrong with me, I kind of owned the things that were wrong with me as like more personally flawed. I'm sure you've heard that story before. It wasn't until August of 2020 August 2020. So a little over a year ago that I finally went to a doctor and got diagnosed.

Pots is a form of dysautonomia, which is a dysfunction of the autonomic nervous system. So the parts of your body that control your heart rate, your blood pressure, all of the things that you don't consciously control in your body are part of your autonomic nervous system, and some people's just kind of fires incorrectly. And that's been going on my whole life. And finally, I went to the doctor and was like, just Why is my heart rate so high? When I try to run? Why do I get so winded so easily? Why are these things too difficult for me? When I look around? And it seems like no one else is struggling like this?

Lainie 1:57

Yeah. And it's also the system that calms you down, as well. With pots, do you have a problem calming yourself down when you're highly stressed? or anxious? Or is it hard to regulate, bringing your stress levels down because of this,

Christine 2:13

I do have a high level of anxiety naturally, and I've dealt with anxiety like in earlier in my life, but I have kind of moulded my life into a much more calm type of setting. And so I think nerves and anxiety are interesting in that aspect, because they are something you can control, like consciously. So I can't like I can do those things consciously. But sometimes my heart rate will be high, which leads me to feel anxious. It's almost like a self fulfilling prophecy, a little bit of a cycle where you're like, Oh, I'm anxious, my heart rate is high. That makes me anxious. And then it's hard to bring the physical signs of anxiety down.

Lainie 2:53

Okay? That's good to know. Because that would be pretty tough on top of everything else. Now, Pots is an acronym. What does it stand for?

Christine 3:02

It's Postural Orthostatic Tachycardia Syndrome.

Lainie 3:07

Fancy.

Christine 3:08

Yeah. So postural is you know, it's talking about standing up Postural Orthostatic is like a standing position. And then tachycardia is like elevated heart rate. So that's kind of like one of the key symptoms,

Lainie 3:21

it sounds like you before your diagnosis, you were quite fit. You were running sounds like your lifestyle was quite healthy. What was the turning point for you to just go, uh, really have to look into it? Was there a story that led up to that?

Christine 3:33

Yeah, there was, I actually I was really sedentary as a child, which is super normal for people with pots, because exercise is so difficult that we just naturally avoid. And so I didn't like running or doing, you know, physical education and things when I was a kid, and I didn't play any sports. And then when I got into my 20s, I realised that I wasn't going to be able to like be a healthy, functioning person if I wasn't active, and I started getting into hiking. And that led me to running. And I started building all of these practices of getting out and getting exercise. And it was several years from the time I decided I wanted to get fit to the time that I finally said, like, I have been working at this for five years. And I run three times a week, and I'm out all the time trying to exercise and it's still so hard for me. And it was actually my boyfriend who we were running together. And he had gotten a running watch that like tracked your heart rate. And I had one I'd had one for a while, but I never paid attention to the heart rate, and I didn't even know what your heart rate should be. And he was doing all this research about it. We're out running and he said, Why are you breathing so hard? Why like what is going on right now? And he said, What's your heart rate? And I looked and it was 186. And we were kind of just like going at a casual jogging pace, and his heart rate was like 120 going the same pace that I was, wow. He said, your heart rate should not be 180. And I was like, What are you talking? But like, I felt the same as I always felt running. So it didn't, I didn't feel like I was exerting myself more than I ever was. But he said, No, your heartbeat shouldn't be that high like you, you need to have that looked at. And then we actually went back and looked at a bunch of previous runs that I had done, you know, all the data in my watch that said, like, oh, last Tuesday, you ran this and your heart rate was, you know, has little charts and things. And we looked at those and my heart rate was always like that.

Lainie 5:25

That's fantastic. That you can go back and look at that. That's like such great evidence based research right there in yourself. So you went to a GP? And what tests did they run to try and find out what was going on for you?

Christine 5:41

Yeah, I actually went straight to a cardiologist lucky, my insurance, let me choose to just go to a specialist rather than having to be referred. So I went to a cardiologist and I sort of just explained like, this is what it feels like when I exercise. This is what's been going on my whole life, I showed them the charts for my running heart rate and stuff. And the doctor just immediately knew what it was, which blows my mind, because when I talked to other people with pots, it sounds like getting a diagnostic run around is really common. But yeah, my doctor knew right away. And she did a really simple sitting, it was like lying down sitting in standing where they take your blood pressure and your heart rate in each position. And there's just a threshold of if when you go from lying down to standing up and your heart rate goes up by a certain number of beats per minute, then you're like within the diagnostic range for pots.

Lainie 6:32

Wow. And she she was on to it. So when you stand up, do you get you know the blood pressure drops or it rises?

Christine 6:39

I think it drops. I'm not exactly sure how blood pressure works. But yeah, it's really common for all the blood to essentially rush out of your head down to your legs and then get dizzy so you can faint fainting is really common. Not everybody experiences that and I've never actually fainted, but I get what they call brownouts which are just like I lose my vision and get dizzy, kind of like hold on to something until my blood pressure returns to normal

Lainie 7:05

brownouts. So that's different to a blackout because the blackouts completely out but a brownouts just, is that a just a more diluted?

Christine 7:14

It's just like almost blacking out, but not

Lainie 7:17

Oh, dear me. Okay, so did she diagnose you on the spot? She did? And what was the prognosis of you know, what did what did you leave her office, knowing that you had to do maybe for the rest of your life, or for the next 10 minutes or for the next hour to try and control this.

Christine 7:36

There's a very wide range of treatments being tried for pots right now. But nothing really definitive. And she gave me a little pamphlet that said, here are some things you can do to help control your symptoms. And the main ones are like no alcohol, no caffeine, keeping a very strict sleep schedule and getting as much exercise as you can. And then the one thing that I wasn't already doing was wearing compression socks, which I tried and hated. I know that it's really beneficial for some people, but it didn't seem to make a difference for me. And so I was like, I don't think I'm gonna wear these hot tight socks all the time. Since they don't seem to help.

Lainie 8:17

I imagined the fashion police would have been on board with that as well. They would have been fining you.

Christine 8:23

Yes. So yeah, and then the other main thing is just managing hydration and salt. And so a lot of kind of the jokes in the pots community are about just like dumping salt on your food and eating pickles and things that are really salty. And and I feel like that's something all of the things that are kind of like dietary and habitual base are things that through the years of getting into fitness, I sort of just realised for myself. So I had already been managing my sleep schedule, I had already quit drinking alcohol and caffeine long before and so I at the time of diagnosis, I was kind of doing all of the things I could to manage my symptoms because I had just figured out those things made me feel better. And without knowing what I had this condition

Lainie 9:12

incredible. So what was the medication you that you left her office with the script for? Or was it all just lifestyle?

Christine 9:18

Right now it's all just lifestyle. There are definitely medications that people take different kind of blood pressure medications or there's I think I always forget what they're called, but there's a medication that will like slow your heart rate down. And so people with pots take some of those things depending on how bad your symptoms are. But when I told the doctor you know, I've been training for 50k race I do a tonne of hiking I'm super active and and like my symptoms aren't bad enough that I'm being debilitated by them. She said if you are able to manage it on your own, and now that you know what's wrong and you have a little bit more information about what your body needs, unless you feel like you need medication, I'd rather not put you on it at this point.

Lainie 9:58

I love this doctor

Christine: 10:01

Yeah, she was really great.

Lainie: 10:02

It's very rare to come across someone like that. But I guess, you know, as a specialist, she would have seen that you're doing all the right things. And you've got the knowledge, and you've done the research and all that sort of stuff for other people that sort of around the medication. What would you recommend that if they wanted to get offered with the lifestyle management, what are the things that you recommend?

Christine: 10:28

Um, I think it really depends on your symptoms. And I think I've been super lucky. I don't know, it's kind of a balance. Like, I think I've been super lucky. And my symptoms aren't that bad. But I also realised like I spent five years getting quote, in shape, and forcing myself to do really uncomfortable exercise, which is the reason I think that my symptoms are not so bad. And when I talk to other people whose symptoms are so bad that they can't get out of bed some days, it's like, I couldn't say to them, oh, you should just start running. Running is what has helped me. And some people like that's not an accessible step for them from where they are right now. But I do know that exercise is kind of the best thing you can do. And so wherever you are, getting into a regular exercise habit is probably the best thing that you could do. And I know for some people giving up alcohol and caffeine and and doing those kind of dietary lifestyle, bedtime things can be really hard. But it's one of those things that like if you do it, and you see the benefit, it becomes really easy to stick with it. And when I quit drinking alcohol, like that was hard for me. But now that it's been six, seven years since I've had alcohol, like I don't even think about it anymore.

Lainie: 11:43

Yeah, that's fantastic. I've got a few questions about it, too. I read up about it a little bit more in preparation for this. And it says that the majority of POTS patients are women between a certain age, do you have any idea or understanding of why that would be?

Christine: 12:00

I really don't. And there's several different theories about what causes pots. And there are several other medical conditions that Pots is commonly paired with. And one of them is scoliosis, which is also more common in women. I have scoliosis and I've had my spine fused. I had a spinal fusion surgery when I was 16. Oh, that's yeah, so and scoliosis often is diagnosed and girls between the ages of like 10 and 13. And then they deal with it during their teenage years and either have surgery or don't. But it's also super common to come down with pots after having surgery or after having a viral infection. And so there's like an interesting surgence of pots happening right now to do with COVID people are getting pots after having COVID. And so I do wonder how that will affect the diagnosis, like the skew of men and women because like COVID is not more prevalent in women.

Lainie: 12:54

Did your cardiologist make a connection between the scoliosis and the pots? Or was that just research that you did for yourself?

Christine: 13:03

Um, she did not. But I I've done quite a bit of research since then, and just talking to other people with pots and it seems like there's kind of a set of other conditions that it seems to be paired with a lot and is statistically found with often so and when I looked through I was like, oh scoliosis, I've you know, I have that and endometriosis. I also have dealt with.

Lainie: 13:28

I was gonna actually ask you about pots and COVID and what your thoughts are because of all the well not all but some some of the side effects that people are experiencing around the inflammation of the of the heart particularly. So you're saying that there is now people being diagnosed with pots from people that have been vaccinated or unvaccinated or just anyone that's got COVID

Christine: 13:51

I think it's just post COVID. I haven't done a tonne of research. So I don't know if there's any correlation between vaccination or like how bad the COVID was or what any other statistics around that?

Lainie: 14:02

Why would you have to increase the salt to bring the symptoms down that interests me?

Christine: 14:07

Yeah. So if you eat a lot of salt, if you have high blood pressure, they recommend you cut down on your salt, so is when you have a lower blood pressure. And also, low blood volume is really common with pots. And so if you consume more salt, then your body retains more water and that increases your blood pressure and your blood volume. And it just it really affects your hydration. And it's easy to let like if you don't have enough salts in your body. If you don't have enough minerals, then the water that you drink kind of just flows right out. And so if you consume more salt, it just helps you retain a little bit of that water which helps hydration levels

Lainie: 14:44

that kind of Yeah, that makes sense. And do you feel that since being diagnosed your life has taken a much better turn, knowing knowing that you're dealing with something that is known and knowing how to address it and manage it

Christine: 15:00

Absolutely, yeah, more often than not, when I have a day where I'm just like, I feel weird, or I'm really tired for some reason, or I'm just feeling like, my body feels strange. Like I've, I've gotten a lot better at recognising patterns of behaviour or food or exercise, or I'm like, Okay, I know I did this yesterday. So that is why I'm feeling this way. And just understanding how my behaviour links to the feelings based on the information that I have about it has made managing my symptoms way easier. And on the flip side of that, I also have such a better mental relationship with my body. Because for so long, I felt like I'm just bad at things, I just haven't worked hard enough, I'm just out of shape, I had all these kind of stories that I was living in about my failure as a physical being. And I don't have to, like own that stuff anymore. Because I can see why it's happening. And I can look at, you know, information about parts. And I can say, okay, like, this is what I should be expecting from my body based on the fact that I have this condition, I don't have to expect myself to be able to do what I see other people doing in terms of running or hiking or, you know, whatever the thing may be.

Lainie: 16:13

Plus, it's a form of self love. Because you're not comparing yourself to other people, you're going, Okay, this is my lot. This is this is the constraints of what I can do and what I can't do, and you're just kind of owning it, you are a bit of an inspiration, I've checked out your you've got 100 - 1000s of followers on Instagram, rugged outdoors woman, and you've also written a book called alone in Wonderland. Was being an inspiration based on your diagnosis, or was it completely separate?

Christine: 16:42

It kind of happened before. And it's been an interesting journey, because I went on the hike that alone in Wonderland is about in 2018. And obviously, I was dealing with all the symptoms of pots without knowing it. And I wrote the book just about my experience of backpacking alone, and being a woman in the wild on my own. And it was very much a story of independence, and freedom and outdoors and all of those things. And then I got my diagnosis about three or four months before I published that book. And at that moment, I just wasn't really ready to kind of like shoehorn that in. And so it's not talked about in the book at all, and, and my kind of mission to inspire women to go in the outdoors and to tell their stories and to talk about independence and loneliness and freedom, like all of that stuff is is was really predating my diagnosis. And then now that I have that information, I went ahead last year on another long distance backpacking trip. That was much more about understanding my body and being in relationship with my physicality and giving myself grace and not beating myself up about everything and, and just relating to hiking and backpacking in a different way. And I'm currently writing about that. So my next book will be much more focused on pots, but also just relationship to body and how we see ourselves as physical beings.

Lainie: 18:07

That's great. I'm sure there'll be a lot of people in the in the pots world that will appreciate that as well. I'll put a link to your places to look at where the book is. And because you know, that's very inspiring alone in the wild.

Christine: 18:24

Oh, my goodness, not as wild as your wild but Australia's much Wilder, I think we have big spiders. Yeah, yeah, we just have bears and stuff

Lainie: 18:36

and coyotes. Great. So would you say that you love your diagnosis? It's a question that I ask everyone on the podcast to wrap it up. Would you say that you love your diagnosis? Or would you say that you're still kind of finding a way of just working with it?

Christine: 18:52

I think a little of both, right? I went through a period of grief after I got diagnosed because I realised that this idea of the rugged outdoorswoman that I was trying so hard to be that I was putting in all of this work, to try to get to some place where I would be what I envisioned of myself. And when I was diagnosed, I realised that that vision would never be, and that was, it was a hard thing to accept. But I think at the same time, the diagnosis has given me a level of freedom that I never would have had if I didn't get it, you know, because I would have been my body would have been the same whether I knew that I had this diagnosis or not. And now knowing it, naming it and and being able to relate to it has given me the freedom to see myself in a new way and to set goals that are achievable. So that someday I can be the person I want to be.

Lainie: 19:43

Yeah, amazing. So to wrap up, what are the main symptoms of pots and are there any parting words for anyone listening, that is experiencing these symptoms that you could give them a bit of hope with?

Christine: 19:55

Yeah, I think the main ones that you would recognise would be elevated heart rate, difficulty breathing during exercise, difficulty exercising extreme thirst, like blood sugar imbalances. And then dizziness is really common. So those are probably the ones that would be the most noticeable. And then there's things like excessive sweating and getting very red when you exercise and other things like that. And the thing I would tell anyone is just to listen to your body. And if you really feel like everyone around you doesn't seem to be struggling as much as you are, there's probably a reason for that. And it's probably not just your fault for being out of shape.

Lainie: 20:38

And I imagined from your story is if you feel that something's not right, go and see a cardiologist if that if you're experiencing these and your GP isn't listening, go straight to the top, find a GP that does listen, there was something called a tilt test, tilt table test, is that the test that they did,

Christine: 20:57

and they did not do that with me, but that is a really common one that they'll kind of use definitively for pots. So yeah, if you can request that, that's kind of a definitive diagnosis.

Lainie: 21:08

That's beautiful. Thank you so much for sharing your story. And it's great that you've found a way to manage it. On a personal level, it's probably, you know, I'm assuming that you feel quite good that you don't have to take medication to do this. And you can just do it through lifestyle. So congratulations, for being able to achieve that and for helping others through the journey and for taking the time to be on the podcast. Thanks so much, Christine.

Christine: 21:34

Yeah, absolutely. Thank you so much.

Lainie: 21:37

All right. Take care of yourself. Bye