Postural orthostatic tachycardia syndrome, better known as “POTS”, isn’t a visible or life threatening condition. What POTS is- is mentally, physically, and emotionally draining.
Joining Dr. Fedrick on this episode of Calm, Cool and Connected is Doctor Cathy L. Pederson. She is the President and founder of Standing Up To Pots. Joining Dr. Pederson is Jill Brook, MA, POTS researcher and nutritionist.
Key Takeaways from Liz’s talk with Jill and Cathy:
• Learn what POTS is
• Hear how POTS symptoms have a profound impact on someone’s day-to-day life
• Find out how and why POTS patients can have strained relationships with family and friends
• Discover the impact that POTS can have on the family dynamic
• Learn how to increase the quality of life for anyone you know who has POTS
All of this and more, on this episode of Calm, Cool and Connected.
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Dr. Liz: [00:00:00] Now more than ever. We have an opportunity to be a positive force in the world to help heal the divide, to treat each other and ourselves with respect. Well, there's so many tools out there from meditation to physical training, proper nutrition therapy, and so many others. We all need a little help navigating all the options.
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Hello and welcome to calm, cooling connected. I'm your host, Dr.
Elizabeth Bennett. Postural orthostatic tachycardia syndrome or better known as Potts is not a visible or typically life-threatening illness, but it is one that causes an enormous amount of emotional, physical, and even financial burden to pots patients and their families. It's also suggested that the burden of pots and to patients and their families is made worse by the lack of [00:01:00] understanding and awareness by most people.
Joining us today is Dr. Kathy Pearson. I biology professor and the founder and president of standing up to pots and Jill Brooke, a nutritionist research liaison, and member of the board of directors for standing up to Potts. Dr. Peterson and Jill our joining us today to provide a deeper understanding of pots as well as the impact on mentally.
Hi guys, welcome
Dr. Pederson: to our
Dr. Pedersen: show. Hi, thank you so much.
Dr. Liz: Absolutely. Thank you so much for joining us. So Kathy, can we start by talking about what exactly is
Dr. Pederson: post.
Dr. Pedersen: Absolutely. This is a really complex disorder that affects the autonomic nervous system. And that's the automatic part of your nervous system.
And so people with pots often have a myriad of symptoms. That include things like or the static and tolerance, which essentially means that when they stand upright, they don't have enough blood coming into the brain. And so that causes them to [00:02:00] feel lightheaded, dizzy, maybe brain fog, where they have problems with concentration or attention and increases their symptoms over.
In addition to that, a lot of people with pots have a lot of pain, so that could be headaches, could be abdominal pain, muscle and joint pain, extreme fatigue, heart palpitations, where they feel their heart beating out of their chest and nausea and vomiting. So again, it's crossing so many different organ systems for.
Yeah, that would be
Dr. Liz: incredibly overwhelming to be living with Jill. Can you talk to us about how these symptoms really affect one's quality of.
Dr. Pederson: Yeah, absolutely. I mean, I think just the sheer number of different symptoms is one big factor. I believe that the average Hotz patient reports having over a dozen different symptoms, so it can just be unrelenting, right?
Like there's. So I'm going to discomfort or dysfunction getting in your way. [00:03:00] And many of those symptoms make it difficult or painful to do really basic things like standing up, eating, sleeping, thinking clearly physically exerting yourself, or really doing anything that requires you to be upright for very long.
So it's hard to catch a break from pots, and I think that can wear on you. Kathy had mentioned chronic pain. Being common symptoms in pots. So I think those are known to have a big impact on quality of life. You know, orthostatic intolerance is kind of the hallmark symptom, which just means it's difficult to be upright.
And our world is made for being upright. Everything you want to do, you know, run errands, go grocery shopping, brush your teeth, everything. And so. Chronically frustrating. So I would say anybody who does not have their mental health challenged by that is way stronger than I am as a positive patient. I should also mention that cots tends to strike people who are quite young in their teens, [00:04:00] twenties, thirties, forties, and 30% of patients are so affected that they need help with very basic daily activity.
It's like just getting dressed. And so that can be extremely tough mentally to be so young and to be dependent like that. Absolutely.
Dr. Liz: I mean, truly the toll I'm just daily functioning on the tasks that we really take for granted that, as you mentioned, brushing your teeth, going to the grocery store, these things that we don't even think a lot of us don't even think twice about.
Right. And so that can truly influence. As you're saying quality of life, daily functioning. Talk to me about really the impact on mental health. So what are the, some of the mental health symptoms that we see associated with?
Dr. Pedersen: Yeah. I think one of the biggest problems is that as you said, in the introduction, it's a chronic invisible illness.
And so when you look at someone like Jill, who has pots, you can't tell by looking at her how debilitating those symptoms [00:05:00] can be. And so there's a real disconnect between how they look on the outside and how they're actually feeling on the inside. And that can lead to a lot of. Awkwardness and isolation, and really put a strain on family relationships and relationships with friends, as people just don't understand why you aren't able to do what you could do before.
The other thing I'd say there is that even when this person goes to a healthcare practitioner and they run a lot of tests, they come back. So the blood work, the urine, the imaging is all normal. And this adds to the idea that maybe pots is all in your head.
Dr. Liz: Yeah. Which that would certainly be that much more disheartening and furiating, just anxiety inducing for the patient, for the individual experiencing that because they know it's not in their head.
There's not the answers that they're looking for. What is the [00:06:00] impact really on the family dynamic that you guys see through this? So their relationship, and let's talk about it a little broader context, their relationship in general, with that.
Dr. Pederson: Yeah, I think it's a huge impact on a lot of relationships, even on the relationships where that person might believe the patient, which is kind of a first big hurdle.
But I think it can affect all your relationships. You know, it takes a social toll because you can't do the same activities you used to be able to do. It takes a financial toll on the family. For sure. And emotional toll, just dealing with all this. And it requires sacrifices and changing roles on everybody's part, you know, in, in my family.
So I cannot derive for a while. I was passing out a lot. So my husband had to change jobs so that he could be working from home. He runs all the errands, goes grocery shopping. He takes me to appointments. He cooks for himself. He's the main breadwinner. And so, you know, it just goes on and on with the responsibilities that can come [00:07:00] along with it.
I know that Kathy has had to work hard to get her daughter accommodations at school to find creative ways to help her daughter graduate despite missing so much class. I, she has spoken about how it's difficult to balance the needs of different family members. You know, she's got one daughter. Who grew up being a bundle of energy, wanting to be out, having adventures and another daughter who could barely leave the house.
So I think that I, I think it's a lot of juggling to do, and it takes a lot of kindness and generosity on everybody's part. And for sure affects all the relationships.
Dr. Liz: Yes, I would absolutely agree as you're describing your husband and what a good man that he is just going out for you like that day in and day out.
That's a really big. What are some ideas you guys could give on how to improve quality of life, you know, in the way that's within their circle of control. So somebody who has been diagnosed with pots, what are a couple of ways that they can influence their quality of life?[00:08:00]
Dr. Pedersen: I said, at one thing, it just believed them, believe them when they're vulnerable and tell you what they are experiencing.
Dr. Pederson: Yeah, I would say surround yourself with people who believe you and support you. And if you cannot find people at home or school or work that do that, come out to one of the many beautiful pots patients and caregiver communities where you will find that kind of support.
Dr. Liz: Absolutely. And what about like self care approaches for somebody with pause? What are a couple ideas for that? Especially because of. Whether it's transportation or just moving around. A lot of that is limited. So what would maybe be a couple ideas, Kathy? Maybe you could give us one and then Jill, you can give us another of self-care.
Dr. Pedersen: I think one really important thing is to learn how to pace yourself and to have everyone else expect that you need to do that as well. So not [00:09:00] overbooking yourself, realizing that you only have a set amount of energy for one day is really important to be realistic about that. Yeah. Great point.
Dr. Pederson: Okay. I would say one is grocery delivery because grocery shopping can be excruciating for pots patients, the fluorescent lights and the standing in line.
But, you know, pots patients tends to be very different. And so it's hard to find a one size fits all solution for anybody. But I think that embracing a an ethic of trial and error. It's something that I hear works well for everybody that you have kind of low expectations, you have to just try a lot of things, kiss a lot of frogs and eventually figure out what works for you.
And then bake that into a routine. There are against the wall and see what
Dr. Liz: sticks absolutely. Where can our viewers find out more about you guys in your the organization that you guys work with? Tell us where you can be found online, social media.
Dr. Pedersen: We have a website that [00:10:00] is standing up the parts.org, and you can find us on virtually all the social media platforms with the handle standing up to pots.
We also have our own podcast called the pots cast, and that can give some really helpful information as well. Great.
Dr. Liz: Well, thank you so much, Kathy and Joe for joining us today. I really appreciate the insights.
Dr. Pedersen: Thank you.
Dr. Liz: And thank you all for tuning into this episode of calm, cooling, connected. Please make sure to find us on Facebook and Instagram and also make sure to rate and subscribe to our podcast so that others can find us as well.
Thank you again for joining us on this episode of calm, cooling, connected. .