Episode Transcript
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 Erica, who has quite a story. I want to just keep it quick and let her start talking. Erica, thank you so much for being here today.
Erica: Thank you so much. It's a pleasure to speak with you.
Jill Brook: So, you have been through a lot and, you have done amazing things. But before we get into that, can you just set the scene for people? Kind of like, who are you? Where are you? How old are you? What's your, what's your basics so people can picture you?
Erica: Sure. I am a 49 year old female living between New York City and Palm Beach, Florida.
Jill Brook: So what was your normal life like, say, in your forties?
Erica: Sure, prior to stumbling into some health issues, I had lived a pretty rigorous career oriented life working on Wall Street and [00:01:00] subsegment of the industry known as private fund placement, which is a role that requires a lot of travel globally all the time, you know, very client focus focused, very execution focused and transaction focused.
So, probably living with a certain amount of stress and certainly pushing myself hard physically but, you know, had enjoyed excellent health for my entire life and was able to apply that rigor professionally, was able to also be very, very active whether it's, you know, tennis or running, skiing, golf. That had served, if I wasn't working, I was probably doing something active.
So I had enjoyed wonderful health and been able to pursue all of my interests. I hit, I hit a roadblock in the summer of 2022 when I experienced the 1st of 3 lung collapses. [00:02:00] And I won't get too far into them because they were addressed ultimately successfully through thoracic surgery. But it was, it was a lot to go through because when your lung collapses, it is a hyper acute, life threatening situation when you have to go, go to the hospital immediately and have this addressed, you can't just be walking around with a collapsed lung.
And, and the surgeries brought some trauma as well. The first one had a lot of complications and you know, left me not fully healed. And so, so, dealing with all of that unfortunately, in between the surgeries, I had to unlock the misfortune to acquire my second case of COVID, and the first time I'd had COVID, it was essentially a non issue.
I barely even knew I had it, healed very quickly, but perhaps because I had been in and out of the hospital and probably my immune system was not as strong as it was due due to all the surgeries, I had a worst case. [00:03:00] And I noticed within weeks of contracting COVID that time that my heart rate was just not behaving the way that it normally had.
Because I had lung surgeries, I was using a pulse oximeter frequently just to monitor my oxygenation rate, but that that also provides a heart rate and the heart rate was just jumping and strange. I wasn't focused on it because I was focused on getting my lungs fixed, which I ultimately did. And the 2nd surgery really resolved the issues I've been having with my lung.
But I wasn't feeling better, and I had different symptoms and just continued to not feel right. It took a long time to figure out that what I had was POTS. It took, I had some initial symptoms of pressure in my chest and some, and some heart rate issues, but like so many people have POTS, go to the doctor and they do an EKG and an echo and every says everything [00:04:00] is fine, but, you know, something isn't fine and it the 1st real tip off came when I was working out with a trainer in the gym.
I was trying to get my conditioning back. And I explained to him that I seemed to have some tachycardia. He had had some experience working with some other clients with tachycardia, and he asked me to wear a heart rate monitor while we do the workout. So, I purchased one of those Polar monitors that sits on your chest and you get sort of a constant heart rate reported to you on your phone. And using the Polar monitor is what revealed that what was going on with me was definitely
a postural orthostatic type of thing. But prior to that, I hadn't realized it.
Yes, exactly. I mean, it took seeing this and I said, Oh, well, wait a minute. I stand up. Oh, boy, the heart rate goes through the moon. And so, so that was very revealing. This is we're now in the middle of [00:05:00] 2023 and so at this time, I was still able to live my life, but I just
was feeling held back and feeling winded and not, not feeling my best at all. Discovered also, you know, using the heart rate monitor, I also purchased a blood pressure cuff, and I discovered that my form of POTS was also the hyperadrenergic type, meaning that when I stood up, my heart rate would soar, but so would my blood pressure.
It was accompanied by, I know that probably many of your listeners have the opposite when they stand their blood pressure declines. And so their heart rate picks up in order to offset the drop in blood pressure. But for me, both the heart rate and the blood pressure, we're soaring. And then about a year ago in January of 24 these symptoms just became
much more exacerbated. So much more extreme. [00:06:00] And so, I'd be going for a walk as I normally would, but instead of the heart rate being like a little bit higher or moderately higher than it should that it would be ordinarily it became extreme, you know, going into the one sixties one seventies. And I would have to just lie down flat when that would happen.
I would, I would feel so much pressure in my chest. I would just have to lie down on the ground wherever I was. And so there were a lot of very embarrassing scenarios of me just on the street, lying on the sidewalk or trying to get into an office building for a meeting, and just my heart rate, just walking across the lobby to the elevator bank, my heart rate going to the
moon. I mean, the extremes were, I'm talking about, you know, being at a 70 heart rate, standing up, going to 160, lying down comes back to 70, you know, within seconds. . But at this point, you know, with those, with [00:07:00] those types of extremes, it was fairly debilitating and I really couldn't leave the house or go anywhere because I didn't know when I was going to have to lie down.
People think you're a little strange when you just lie in the floor in a restaurant, for example, or in the middle of the road. So I started, I just I saw everybody I could to try to figure out what was going on. And I'm fortunate in that I have a lot of, I had a lot of good medical resources. In the course of trying to address this, I worked with four concierge doctors.
I worked with three long COVID clinics who were excellent, by the way, and I'm so grateful for their care. I worked with 6 cardiologists, including some very highfalutin muckety muck kind of guys, and probably through you know, [00:08:00] definitely in excess of 100, 000 dollars at this problem, trying to figure out how do I fix this.
What I discovered was that while, while the doctors were aware that something about the COVID virus can cause this sort of POTS condition where the autonomic nervous system is just not capable of regulating itself well, they didn't know why, and they didn't know what to do about it. The cardiologist I saw, I mean, that was, you know, that was sort of accepted at the, you know,
primary care practitioner level, the concierge doctors all seemed aware of that, but didn't have answers. The long COVID clinics had, you know, at least we're trying to treat and had some ways to treat. I had done a blood thinning protocol with Dr. Vaughn at the MedHealth clinic in Birmingham, Alabama. He's excellent, and I think the blood thinning helped me.
I [00:09:00] had tested very high on the microclotting test that he does under the fluorescent microscope, but it didn't solve these very extreme heart rate fluctuations or the extreme chest pressure. I had even gone so far as to work with a cardiologist who was familiar with long COVID patients who had POTS and who had had some success having their iliac veins stented and I guess if you've had some iliac vein compression, which can be very common in women, especially, but COVID can exacerbate it because the entire vascular system gets damaged by the micro clots that can occur when the COVID when the spike protein is flowing through your system.
Jill Brook: I think a lot of our listeners are going to be very eager to hear about that experience and if you thought it helped.
Erica: It didn't, you know, I, the, [00:10:00] I did have my iliac vein stented with Dr. Brooke Spencer in Denver. She's excellent. She had estimated that I had about 90 percent compression of the iliac vein. So I think we were all hopeful that that procedure would address the address the POTS problem. I was very hopeful. I didn't notice a marked difference,
and that was over the course of a couple of months after. You know, we, I knew that it does for some people they have a stent and they feel better immediately or within a week or 2, but for me, unfortunately, that the symptoms were just perpetuating in the exact same way. You know, unfortunately, you know, so despite all this excellent treatment and I'm so grateful that there are doctors out there willing to think a little bit outside the box and willing to treat things because, you know, not, we don't all have the luxury of waiting for however many years it's going to take for clinical trials to be developed to address these symptoms that, you know, make [00:11:00] life a lot less enjoyable than it was.
So that wasn't the answer for me. So having exhausted just about every resource that I could, I was feeling, you know, as I know, so many people are, you know, a little dejected saying, okay, well, the doctors are saying, I've got to just hope this goes away on its own and in the meantime, I can use these beta blockers to help manage the symptoms but that's just a bandaid.
It's certainly not it solving the root cause of what's going on.
Jill Brook: Well, and I think you're very stoic, but what I'm hearing is that you were super miserable. I know the beta blockers you told me had made you feel very ill. You had spent $100 ,000, you had gone to all these doctors. You had, I think, driven from Florida to Denver, gotten a stent, you had done the triple anticoagulant therapy, which is not that fun, and all of this did not have you markedly better?
Erica: It's I had been poked [00:12:00] and prodded and treated and x rayed and imaged to within an inch of my life. I mean, it was my full time job. I mean, I really couldn't do anything else was except book doctor's appointments, get imaging results, go get blood tests.
Jill Brook: And I think you mentioned that you had to be wheeled in a wheelchair for, some of these things, right?
Erica: I did. Yes, I mean, when I, when I went to the Cleveland Clinic to see a specialist there things were, I was at that stage where just walking through a lobby could send my heart rate to a level where I'd have to lie down on the floor. And so, if you lie down on the floor in the lobby at the Cleveland Clinic, they're going to hospitalize you.
So I took the wheelchair. There were some, there were some you know, I know that so many of your listeners are going through their own suffering and I empathize with everybody and I don't want to say how terrible mine was, but there were, of course, some really dark days and, and it was so [00:13:00] frustrating and in many ways, having been through, I just had these lung collapses and the lung surgeries and that was bad.
But in many ways, this was worse because the doctors knew how to treat the lung collapse. There's an established protocol. They know what that is. They've seen it a million times. And if you're lucky enough to be treated in the United States of America, you're going to, you're going to be fine. It was frustrating to not have the doctors know.
And so it's frustrating to hear, oh, you know, especially with these chronic conditions like POTS just aren't established and there isn't literature. There's just not the doctor's thoughts. There's just no literature for them. And that's how they're taught in the medical schools. They're just they're taught what's established.
And so I, of course, I went to the exact same frustrations that I'm sure so many of your listeners have gone, gone through just trying to be heard, trying to not be, and by the way, I mean, I was, I'm sure [00:14:00] many of your listeners are been gaslit in their process. So was I right? And so I just wasn't willing to have this be my life.
To basically be stuck on this medicine that made me feel so sick to my stomach that, I mean, it did, I am grateful for the medicine because it did allow me to be able to leave the house and go do things I had to do, but it didn't, it just tempered the symptoms, it did not solve them, so it was still very uncomfortable, pressure in my chest, still uncomfortable heart rate, and then, of course, the accompanying nausea from the medicine just made life miserable.
So, I start researching everything I can.
Jill Brook: And can I, can I let people know that this story does have a pretty happy ending?
Erica: It does, it does
have a happy, in case, in case people are saying enough of this I just researched, researched, trying to find any hope of salvation. And somewhere deep in a [00:15:00] Reddit board, I wish I could find the post again, I've tried to go back and look, but I found some mention
of a program called a D. N. R. S. David, Nancy, Robert, Samuel. Which had been used by a Stockholm hospital to treat 3 patients who were hospitalized from post COVID POTS. And so when I saw it, I said, oh, my gosh, what is what is this? What is this? D. N. R. S. And started learning more about it. Stands for Dynamic Neural Retraining System and it's a program that was developed by a woman named Annie Hopper a while ago.
I'm going to say at least 15 years ago. She developed this system to address what she calls is nervous system dysregulation. Annie had her own health issues. She was a thriving [00:16:00] psychologist and journalist in Vancouver who got a new office space to see her her psychology patients and unbeknownst to her that office space had mold.
So she got mold toxicity. But for some reason for her, it wasn't just the most toxicity and she recovered. For some reason for her, the mold toxicity spiraled into other conditions. And the next thing, you know, she's having allergic reactions to regular household chemicals she had been able to be around her whole life.
Or one of her clients would come in for a session to her office wearing perfume, and she would have an allergic reaction to that. And it didn't stop there for poor Annie. It continued into developing an allergy to electromagnetic fields, so she couldn't be near the Wi Fi router or the cable box. And so she finds herself having to be basically driven out of [00:17:00] town, living on a houseboat somewhere in the middle of nowhere, where she was away from all the electromagnetic fields and away from all the chemicals having to leave her husband and
live this solitary existence. She did research on nervous system and neuroplasticity and developed a thesis that these types of chronic conditions with these strange symptoms are rooted in the nervous system getting stuck in a fight or flight state that results in the brain over firing on its protective mechanisms.
What do I mean by that? You know, our limbic systems are the most fundamental part and oldest part of our brain in that they haven't really developed much since we were hunter gatherers. So, our limbic system is designed to essentially protect us from the tigers in the woods. So, if we're out [00:18:00] picking berries somewhere, and we hear a little bit of rustling, our nervous system kicks into gear, floods our body with some stress hormones so that we will run away and escape from the tiger.
And unfortunately, although, which is a very handy thing, and we should all be grateful to have, have these nervous systems that will protect us in that way, but unfortunately, they haven't really developed in conjunction with the development of our prefrontal cortex or of the modern world. And so our nervous systems can get easily confused in the modern, in modern life between our iPhones or our stress at work, or our, you know, issues with our partner, or even just traffic, or
a million, a million daily woes that sometimes can cause the nervous system to think that there are tigers around us all the time. For some reason, COVID seems to be one of the triggers that can cause the nervous system to get into this sense of dysregulation. Mold toxicity can be another. Actually surgeries [00:19:00] can, any kind of major trauma.
Jill Brook: I was going to say your, your system had been through a number of these things.
Erica: Annie talks a lot about the perfect storm of events. You know, in my case, it was three lung collapses, two surgeries, COVID. My mother was also her dementia was sort of hitting an, a nadir, you know, we were at a sort of a point where she had to go into assisted, so there were a lot of stressors happening at the same
time. And this was on top of, you know, I was a person, hyper type A person living this demanding Wall Street career, kind of living in a perpetual state of probably subclinical stress and nervous system dysregulation to begin with. But a lot of people when they look back at their story and how they got here, they maybe start to realize that it was sort of a combination of factors and maybe they didn't even realize how stressful those factors were
until they got sick and and looked back. So, [00:20:00] Annie's research into the brain, the nervous systems and also the concept of neural plasticity, which essentially just means that the brain is changeable, that neural pathways are not fixed and permanent. They can, they can shift and they do shift and that's how we get into this broken state to begin with, where the nervous system essentially says the symptoms are really the messengers of the nervous system saying, hey,
you're not safe and you need to do more. And especially if you're not listening to those symptoms, and maybe the body's even just saying you need more rest, you're taking on too much, you're too stressed, you've got too much going on, you're at the brink, and if you're not listening, it'll start getting louder and louder and louder.
Jill Brook: So I know everybody's dying to hear what your experience was.
Erica: Yes. Well, it's interesting because so I discovered this [00:21:00] DNRS program and I purchased it immediately. By the way, it was 300 so it was, you know, the best bang for my buck of the 100, 000 some dollars I spent on medical in terms of my recovery. I started doing the program and it resonated with me immediately and I had a sense that this might be the answer to my problem, but that was actually before I, I mean, I was still pursuing every medical angle and working with a bunch of doctors and I, I still went and had a stent placed before focusing on the nervous system work
because I think it's natural for all of us to just want to find answers in our medical community. We were having medical issues and we want there to be an established answer. And it's frustrating when there isn't. And so, for me, and I think for a lot of other people, because I'm a, you know, loosely, just on a friendly basis, advising some other people dealing with chronic health issues now everyone really just wants that solution from their [00:22:00] doctor.
Jill Brook: So when you started doing this program, what did you notice?
Erica: Well, I did the program. First I did the program and then decided I would really when I hit all the walls on the medical front, I decided I would dedicate my time intensely to the study of the program to see if it could work. I use the DNRS program and I also worked with an excellent coach named Tessa and really sort of shut down my life.
I tried to stay off my computer off my phone and really just, you know, dedicated a couple of weeks. And for me, it was very, very fast within about a month.
Jill Brook: Doing it all, were you doing it all day?
Erica: You know, it's not an all day every day, but I was, I was not, I wasn't in a high stress environment. So from that standpoint, it was an all day thing.
I was not being online, not doing conference calls, not stressing about the stock market, not stressing about, not having to be [00:23:00] anywhere. I wasn't, I wasn't, you know, going out socially. I wasn't seeing people. I was just being very quiet and focusing a hundred percent of my efforts on nervous system regulation, and I, I healed in about a month,
I would say. I mean, it was incredibly quick. When I start, I'll just give you an example of some of the things that we're able to heal very quickly. I had tried to get there was a Peloton bike at my house in the garage, which was in the summer in July, and it was very hot and humid in there and I tried to get on the bike for a little bit.
And I could spend about 2 minutes and my heart rate would just go crazy and I'd have to go inside and lie down. I worked on that concept with my coach. I addressed some of the associations that were probably sending my nervous system to a tizzy. Heat and humidity was one of the triggers that, you know, made my POTS exacerbated.
Within a [00:24:00] week I was able to ride on that Peloton bike for 60 minutes.
Jill Brook: My gosh, that's amazing.
Erica: In that month I didn't spend, spend a lot of attention focused on my symptoms because that's part of the program is that you're supposed to not focus as much on your symptoms. But I was able to wear my Apple watch and then sort of look at my heart rate statistics in arears. Within one month
I brought my resting heart rate just down from 75 to 55. Just a sign of how much my nervous system was settling, but there were other benefits too. It wasn't just that, you know, and also I wasn't getting the massive spikes upon standing anywhere near as much. Those just improved, improved, improved.
It's solved other issues for me to, you know, the nausea, the digestive system issues also went away. I was able to sleep at night without supplements, without taking melatonin, and just not not wake up in the middle of the night, sleep soundly, wake up rested. [00:25:00] The work can be really transformative and I wish I had discovered years ago that it didn't take sort of having to get to this place of having POTS
that was so debilitating for me to have to listen to my body enough to to focus on this. I think, you know, there's some misconceptions about nervous system dysregulation that some people might think that, oh, this is, are you saying this is all in my head? Are you saying that this isn't real? I mean, it's a scientific thing that you're we all know that the body can be in a fight or flight state and it can get stuck there.
But more than that, the condition is not psychological. It's not about your prefrontal cortex and what you're thinking, it's a neurological process that your neural pathways get broken, so to speak, get headed in the wrong direction. And the way to heal those [00:26:00] is twofold. It is pruning those neural pathways that are going the wrong way and it's building new neural pathways that are
in a healthy in a healthy direction. What does that mean practically? That means not not paying attention and letting your life be derailed by your symptoms. To some degree, you have to sort of take the symptoms in stride and chalk them up to nervous system dysregulation and help create a sense of safety in your body.
And it's hard to do at first, because nobody likes symptoms. No one likes the discomfort of whether it's a mass cell reaction, whether it's your heart rate, whether it's pressure in your chest, whether it's digestive issues, feeling stick to your stomach, whether it's having a food sensitivity. No one likes going through this, and it's very [00:27:00] easy to get down and frustrated by them.
This program is really about overriding that instinct. And helping your body recognize, okay, really are no tigers here. These symptoms are just the nervous system not feeling safe. So my job is to help the nervous system realize
tigers aren't here.
Jill Brook: Yeah. So can I ask what does the daily work look like now? Because I know you spent that first month being really intensive about it, but what is the ongoing work look like? And how is it different than just deciding you're not going to let your symptoms bother you?
Erica: You know, the daily work is pretty holistic at this point. I don't have to do anything. But I do try to keep a very positive mental state and make sure that I don't, make sure that I'm in the right frame of mind all day long to handle whatever is happening in the world or other people or their [00:28:00] behaviors.
All of these items are out of our control. What happens every day. It's recognizing that we can control how we respond to the stressors. And so, whatever they may be, right, we can't control the weather, we can't control the global political conflict, and we can't control the election and we can't control all of this, but we can control how we respond.
And that goes for, you know, very big issues down to the minute issues. You know, you can't, you can't control when your POTS is getting exacerbated, but you can control how you respond to that. And controlling how you respond to that is the key to your healing. Does that make sense?
Jill Brook: Absolutely. And so when we were speaking before recording, I think you had mentioned that you have much of your life back. Do you want to talk about, what, what do you have back and what do you still not have back?
Erica: I mean, a year ago at this time, I could barely leave the house to [00:29:00] do anything. Today I can do anything I want. My body's capable of anything I want to go do. I can I can exercise. I can go to the gym. I can play sports. I can socialize. I can work. Everything. I would say I'm about 97 percent healed.
And the part that I'm still working on is when you get your life back, which is great, and you get to go out in the world and enjoy everything and enjoy people and everything you used to do, what does come back though, inevitably, there are going to be stressors involved in that. And so I find that sometimes some symptoms will resurface, not debilitating, but just, but there, letting me know
that things aren't 100 percent healed yet. I believe it's an ongoing process and I hope at some point to not have to think about it anymore, but because this work makes your body so much healthier overall, [00:30:00] maybe it's a good thing that I'll always be thinking about it a little bit, approaching my life a little bit differently.
Jill Brook: I mean, I have to thank you on behalf of many of us for having tried so many things that were super expensive, maybe super invasive. And is it correct that you would recommend people try DNRS first?
Erica: Well, there's so many nervous system regulation programs. I used DNRS. There's tons of them. There's, one called Primal Trust one called the Gupta program. There are others I know, and there's information available on the Internet. I can direct you to some of these resources if you'd like to link them, or people review the various programs, I think what's important is just doing any program.
I really liked Tessa and her approach. She makes it the most easy, less rigorous, the least rigorous approach of them all. So, but people should do what they feel comfortable with. And some [00:31:00] are more meditation focused and there are more visualization focused, just, just learning the fundamentals of how the nervous system can impact your health, how you, and how you can regain control over that.
That's the important part.
Jill Brook: Well we are so excited that you have your life 97% back. And know everyone is rooting for you. Is there anything else you want to say to your fellow patients out there who are listening?
Erica: Well, I wish everybody all the best with their recoveries. I think just to provide encouragement that there are healing modalities out there and to not give up hope.
Jill Brook: Excellent. Well, Erica, thank you so much for sharing your story and your insights with us. And, and it's, you know, I'm so sorry the lung thing happened and then the COVID thing and then the POTS thing and but way to show way to show it who's boss. And, and
we'll have [00:32:00] to have you keep in touch and let us know how you're doing.
Erica: I hope this information will help some of your listeners.
Jill Brook: Hey listeners, we hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening. Remember you're not alone, and please join us again soon.
