Episode 18: Breathing Issues in Long Haul Syndrome and POTS with Dr. Noah Greenspan

Link: https://tinyurl.com/yde5e3z7

00:00:01 Announcer:

Welcome to the Standing up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research in empowering patients to not only survive, but thrive.

This is the Standing up to POTS podcast.

00:00:28 Jill (Standing Up to POTS):

Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook and today we are going to discuss post-COVID POTS and breathing issues in POTS with an incredible expert, Dr. Noah Greenspan. He is a board-certified clinical specialist in cardiovascular and pulmonary physical therapy with over 27 years' experience. He's the founder and program director of the Pulmonary Wellness and Rehabilitation Center in New York City, which has been repeatedly named one of the best in the United States.

He is also licensed as an emergency medical technician. He's an educator who has taught at major medical centers. He is a published researcher. He wrote the book, Ultimate Pulmonary Wellness, and he founded the nonprofit, Pulmonary Wellness Foundation.

He is widely beloved by his patients for being so dedicated to their progress and people fly to New York City from all over the world to work with him. I could keep going about Dr. Greenspan’s accomplishments, but I want to get to hearing from him.

So, Noah thank you so much for being with us today.

00:01:36 Dr. Noah Greenspan:

Thank you, Jill. It's an honor and a pleasure. Happy to be here.

00:01:40 Jill (Standing Up to POTS):

So breathing issues in POTS have not received much attention as far as I can tell. We see the symptoms of shortness of breath and hyperventilation appearing on lists of common POTS symptoms, but that's about it. And given how distressing it can be to have breathing issues, I'm really excited to hear your perspective and any advice you might have for us.

But I wanted to just give listeners a little bit of context. I got to know you through your tireless efforts to help COVID survivors and those with long hauler syndrome. You were in the thick of it. You were at the epicenter of COVID in New York City, unfortunately. And so before anybody really knew what was going on, you were seeing these people struck by COVID and you were providing lectures, support groups, and online boot camp, and just wonderful resources, and you found the Dysautonomia Clinic, where I work as the nutrition consultant, and you had me speak to your community about nutrition and you had me work with some of your patients. And everyone kept telling me the exact same thing: First of all, “Noah is the best,” and that you helped them so much. But second of all, I kept hearing that you were the one and only person to recognize that they had POTS and/or dysautonomia.

Some of them had seen multiple doctors had no clue what is going on, but you spotted it. So, what were you seeing? How did you recognize POTS or dysautonomia?

00:03:17 Dr. Noah Greenspan:

Oh, great question. It's, it's really interesting.

So my background is in cardiovascular, pulmonary and complex medical rehabilitation. In order to do those things successfully, and when I say successfully, I mean, you know, first and foremost not to hurt people, you know, Hippocratic Oath - primum non nocere - first do no harm, you have to be really open minded in the sense of you have to be using all your senses at once.

March, April, May - the term “long hauler” hadn't been coined. There were no long haulers, we just assumed people had COVID and were still suffering the impact of critical illness. But the people that I were getting calls on were people who were in the ICU, people who were on ventilators, people who had COVID pneumonia, and people who at that time, you know we, we thought COVID wasn't a primarily respiratory condition.

And there was a lot of chatter about, you know, like the idea that is there going to be a whole new crop of people who need lung transplants, right? Because there was this idea of pulmonary fibrosis, because some of the early findings were similar to what's found in people with pulmonary fibrosis and other interstitial lung diseases, which basically means they were afraid that there was going to be scarring on the lungs.

And thankfully, not to say that nobody has wound up with scarring on the lungs, there's findings now that show a lot of the things that looked like early scarring were actually inflammation, and many of those people have gotten better. But initially I was - I was seeing patients who were extremely debilitated, mostly respiratory issues, shortness of breath.

And as we get to know the long haulers more and more as we got to know the long haulers, what we found was that they were very ill, but their constellation of symptoms really appeared and felt, at least kind of qualitatively to me, like more like a multi system trauma patient. And what I mean by that is that the people that were in the ICU, the people that were on a ventilator, we saw a path forward to that for them. And these people very often had a very, very slow progression, but it was predictable.

I started shifting my practice to pretty much all COVID all day, every day. And we started seeing, obviously in these people, you know when you spend your whole time in horizontal when you stand up, there's a lot of changes in blood flow and there's a lot of changes in how your body responds to those changes in blood flows. I haven't done a lot of neuro in my career, but luckily the neuro that I have done has all been focused on autonomic dysfunction and POTS. And a huge amount of what I know and have learned about POTS, I learned from one patient who is a young woman who came to me for several years and then we started seeing more and more POTS patients.

Now this is going to sound funny, but we've seen about 7 POTS patients, OK? Now, that doesn't sound like a lot, but when you see them for three times a week over the course of five years or something like that you start to see patterns, and that's what happened with COVID.

So, little by little - just to be clear, like our practice was not like - it was like, well, you know what? Nothing has worked. So if the idea is there's nothing we could do for you and we don't know what to do, then as long as we don't hurt people then we can try things and feel like we have a little bit of leeway and a little bit of a, you know, kind of running room to give some things a shot.

So, with COVID I was basically seeing people for free because I didn't feel like I was qualified to charge for my work number one, because I didn't know what COVID was, right? We didn't know, so I said, “You know what? This is my way to learn, and this is my way to create COVID university for myself. So it was partly out of selfish desires to get myself up to speed with this.

So I saw hundreds of COVID patients remotely. I had all these experts on, and again, you know the term “expert” is - they were expert in their specialties. So we had a cardiologist and neurologist, Dr. Blitshteyn (Transcriber’s note: Dr. Blitshteyn runs the Dysautonomia Clinic and is a POTS doctor in New York.)

We had pulmonary multiple pulmonologists. We had gastroenterologists but they were all experts in their field, but nobody was an expert in their field as it relates to COVID. So I said, “You know what? This is a perfect opportunity. Let's get the people on the frontline. Let's bring them in and ask them what they saw and pick their brains.” And little by little by little, after seeing more and more and more and more patients, we started picking up patterns. And after I had seen about 125 patients, I was kind of like chomping at the bit, like I was feeling like I was a caged animal. And then I said, “You know, at this point I need a lab.” And in October, October 1, 2020, we opened the post-COVID Rehab Center at H&D physical therapy because I needed to get my hands on patients.

00:08:35 Jill (Standing Up to POTS):

Interesting, so you had seven POTS patients before COVID, and now you've had many, many. What percentage of your long haulers do you estimate have POTS or some sort of dysautonomia?

00:08:47 Dr. Noah Greenspan:

A lot of them, you know, and it's it's an interesting question again because I think some of the ways that the world gets hung up - humans in general - get hung up on things as we like to put things into nice, neat little boxes. I mean the simple answer to your question, as is the answer to most questions COVID, is I don't know. It's a lot, but I also, I'm not really in a hurry to diagnose somebody or what is it coming from? We don’t know.

COVID is one of the most variable condition and constellation of conditions that I've ever seen. And it's not like having a pulmonary problem or a cardiovascular problem or a neurologic problem or a gastrointestinal problem - it's like having cardio on top of pulmonary superimposed on GI superimposed on neuro. And then if you do have dysautonomia, then that's a whole other like kind of moving earth type thing where it makes everything else hard to get your footing on. And you can also change physiology if you really understand the physiology. But it's understanding the basic stuff. It's not understanding this high-level stuff because most people never get to the high-level stuff.

We think about things - like autonomic dysfunction is really a big player in COVID, except we don't know exactly how it's going to play. So people talk about shortness of breath, a ton of people with COVID are short of breath, but they get a chest X-ray and the chest X-ray is normal. They get a CAT scan and the CAT scan is normal. They get a pulmonary function test and the pulmonary function test is very often normal. The doctor says, “Well guess what? Everything is normal. You shouldn’t be short of breath.”

00:10:31 Jill (Standing Up to POTS):

I love your orientation to really look at everything in the bigger context and not just black and white, because we hear from so many people who didn't quite meet the diagnostic criteria. So on a tilt test their heart rate went up 29 beats per minute instead of 30, so they don't qualify. So now they don't get the treatment. Insurance doesn't cover anything, and it's - and it's crazy to think that one beat per minute was the difference, and so I really appreciate how you look at the bigger picture.

And you are the first time I've ever heard someone explain that blood pressure is actually a combination of three things.

00:11:09 Dr. Noah Greenspan:

Well, it's a combination of many, many things right? But if we think about heart rate, stroke volume, and peripheral resistance, well, guess what? We can change those things, right? That's where things like compression stockings come in, right? Because that's going to change the peripheral resistance. That's giving you mechanical resistance where maybe your blood vessels are not yet.

So let's say we don't use any compression garments. I believe there are things happening on a micro level or on a cellular level that we just can't pick up. It's like if every day, every day you wake up and there's a dead chicken on your lawn, something is going on. We may not hear it. We may not see it, but something is killing our chickens. And it's the same thing.

So like with POTS and those types of things and the changes in vital signs, like you turn over this bottle of maple syrup, and a whole bunch of it is going to go to the bottom right off the bat. But then there's going to be this part that just trickles down the sides over the next 5 minutes, right? Well, it might be that trickling down the sides that just takes us to that tipping point where now I'm symptomatic - and not just shortness of breath, but like chest pain. Chest pains are very another very common complaint in POTS and dysautonomia and COVID. Breathing is multifactorial, and what I mean by that is that there are many, many, many factors that can determine how well or how poorly we breathe.

What are some of them? So you could have a problem with your airways, right? So that's airway - airway dysfunction is where we talk about things like asthma, COPD, chronic bronchitis, and when we talk about emphysema, we're talking about dysfunction of the alveoli, which are the air sacs, right?

00:12:52 Jill (Standing Up to POTS):

And I should just jump in and say that an article written by Dr. Fedorowski in 2018 does mention asthma as something that presents with POTS patients.

(Transcriber’s note: you can access the article by Dr. Fedorowski here: https://onlinelibrary.wiley.com/doi/full/10.1111/joim.12852)

00:13:10 Dr. Noah Greenspan:

Great point, OK. So here's the thing - a lot of COVID patients are getting diagnosed with asthma. Do they really have asthma? I don't know. My bet would be they probably don't have asthma, so in something like that I'll say asthma-like. So what does that actually mean? What is asthma?

Asthma means that there's airway reactivity. That means that the smooth muscle lining the airways is hypersensitive, hyperreactive, and constricts. And that makes sense with everything that we know about COVID and that makes sense with everything that we know about POTS. But here's a very interesting thing about the autonomic system: you can affect the smooth muscle that lines the airway.

Essentially there's three types of muscle in the body, so there's smooth muscle, and smooth muscle is like what dilates and constricts your airways. It's what churns your gut, and let's say you have asthma-like airway reactivity. So the question is, why do you have airway reactivity? A number of different reasons.

So the smooth muscle inside your airways are there for a reason, right? The idea is so that when you need more air, they can relax and dilate and open up the airways. But if you're in like a smoky situation, or if you're standing on 5th Ave and a bus blows by you in the middle of summer and pushes the soot into your face, you don't want that stuff getting into your blood stream, so the purpose of the airways is to constrict and not let that crap get into your lungs. But it's when something becomes hypersensitive.

The other thing that it does, it produces mucus to trap all that stuff. So that's actually a protective mechanism, and it's like we want somebody at the gate making sure that nobody dangerous comes in. But when it becomes so hypervigilant that nothing gets in, well, then, that's where we've gone too far over to the other side. They're being told this is anxiety. Chest X-ray is normal, and your CAT scan is normal, and your pulmonary function test is normal. Well guess what? There's only one possible thing that it could be - anxiety. And the answer to that is that's not accurate, but anxiety does play a role because as the American Lung Association says, if you can't breathe, nothing else matters.

So if we feel short of breath, our body, our autonomic nervous system, picks that up and says, “Hey, what's going on here?” We have a situation. We better acknowledge the situation and treat it as if it's an emergency fight or flight. Fight, flight, freeze - and that is the sympathetic nervous system kicking in.

And one of the things that we know about COVID and one of the things that we also know about many situations related to POTS and dysautonomia is that we see a hyper overflow of sympathetic nervous system activity. So it's like go go go and it's like your body just puts out this charge as if you’re being chased by a bear.

When it's like, you say if you're going to the grocery store and you don't know if you're going to make it back because you either feel like you're not going to be able to breathe, you're going to have a heart attack, or you're going to pass out because you're so dizzy and lightheaded, that you know it's like, oh, Elizabeth! It's the big one. You're not going to do those things right? And then those things have an impact going forward.

So if you stop all the activities that cause you symptoms, then what happens is all the muscles that you use, all the systems that you use, and even the emotional aspects of doing those activities get out of whack. And that's really what dysautonomia is, and you know, so when it comes to POTS, dysautonomia COVID...

00:16:46 Jill (Standing Up to POTS):

That's why we brought you here. (Laughs) No, but actually that does bring me to my next question, which is that we see some of these very distressing symptoms in POTS patients. Let's just start with shortness of breath. Do we have any clues as to why a POTS patient who is young and theoretically has a fairly healthy set of lungs would get shortness of breath?

00:17:11 Dr. Noah Greenspan:

I need to really understand their situation and I need to not just hear it once. I need to continually ask questions and continually shift this Rubik's Cube. Every person has their own individual Davinci code that has to be figured out.

00:17:34 Jill (Standing Up to POTS):

So I like that that's really interesting.

One symptom that patients talk about sometimes on Facebook groups and whatnot is a symptom that I don't think has a medical definition as far as I know, they call it air hunger. Have you heard of that? Do you know what that is?

00:17:51 Dr. Noah Greenspan:

I do. These fish are kind of at the top trying to gulp air. It's like they're trying to find that oxygen in any way that they can. And when we talk about air hunger, it's a sensory thing that can probably come from a number of different physical and physiologic things. So I think, if I had to say, I think what most people mean when they say it is that they just can't get a deep breath or no matter what they do, they don't feel satiated in terms of a breath or air.

One thing I'll ask people, I’ll say, “Well, does it feel like you're starting to take the breath and that breath stops before you get to your full range of motion of the breath? Does it feel like your lungs are smaller and that therefore you've gotten to the full range of motion but it's in a smaller lung? Or is it that you feel like you kind of have this increased resistance from beginning to end?”

And I think some of these words get a little bit distorted, OK? Like, they get distorted because people use them and they make assumptions about them, right? Like when it comes to air hunger, like I think different people mean different things by it, but I think that what's really important is to try to figure out what are the physical aspects of it from a mechanical perspective, from a physiologic perspective, and particularly with COVID, there's so much outpouring of information. Chest pain pre-COVID is totally different than what I think of post-COVID.

And even a lot of our treatments, like just as one example using oxygen, if your oxygen saturation is fine, then using oxygen won't help you, but in COVID patients it does.

You know there's such a pressure to do things quickly, to do things fast, to get a quick diagnosis. I've learned almost everything I know about long haulers from long haulers. So we've had a group for almost a year now. We have a lot of long haulers in our group that I call the “Veterans” that, you know, have had- have patients and family members and caregivers and healthcare professionals.

Well now you have exposure to this whole group of experienced patients and when you see this Zoom screen and everybody’s head is nodding and saying, “Yeah I experienced that,” then like a light make it go off for you in a way that it might take you 10 years to see that number of patients in your actual practice.

00:20:21 Jill (Standing Up to POTS):

Oh, that's excellent.

So, in general, how are your post-COVID POTS patients doing? Are they making progress?

00:20:29 Dr. Noah Greenspan:

They're definitely making progress, absolutely. At the beginning, I mean, I really felt people would get better. I'm a believer that the body inherently wants to heal, and I'm a believer that the body inherently knows what to do to heal, except that in this game, it's like the rules are the opposite.

You know, it's like everything shifted. So what I mean by that is that for a lot of conditions, we feel that pushing is going to be helpful. We feel that, “Oh, move it or lose it,” or you know, “no pain, no gain,” or “rehab is go! Go! Go!” and it's it's it's activity based.

But in this case it's a lot different. So with the patients that we're seeing, I'd say the biggest potential pitfall for them, short of big ones like heart and lung, but you have to rule out those big ones. Like you have to rule out the life and death dangerous things, but then we can start kind of looking at what are the other things that are going on here.

So as an example, overdoing it is a big sin, and I say “sin” without any judgment. I say, “Oh, I was starting to feel so much better,” and then the joke is “And what did you do?” That's not the time to be pushing. That's not the time to be trying, you know, new exercises or new activities.

That's the time when you need to quiet the sympathetic nervous system at all costs, and that's where rest is so important. That's where sleep is so important. That's where things like meditation and breathing exercises are so important. Anything that can quiet the sympathetic nervous system and enhance parasympathetic tone.

Anything below negative five, you shouldn't be doing rehab. You shouldn't be doing therapy. You shouldn't be doing - you shouldn't be pushing in any way, shape, or form. “Hey, I spent 8 minutes doing my taxes and all of a sudden I felt this brain fog coming over me and building up and building up to the point where I had to stop.”

So you have to be aware of these things, and again, look at what you're doing. Evaluate that. Listen to what the patient is telling you, see what they feel, and a lot of times ask all those questions myself.

When we started working with the team, their big kind of response was, “Wow, it's so different and you get so much more information when you get it yourself from the patient versus they fill out a form online because you're in the moment. Because you can ask people things and you say, “Oh, do you eat any sugar?” And they’ll be like, “Nope.” “Do you eat any Snickers?” “Yes.” Well, you know, I mean, it's like, “Well, what do you mean?”

And also you know we have to keep in mind that to non-medical people or not even non-medical people but just to anybody right?

“You don't feel any chest pain or pressure?”

“No.”

“Do you ever feel any squeezing feelings in your chest?”

“Yes.”

So like, you know, and sometimes these things don't make sense because sometimes you, again, you just have to Rubik's Cube it and look at it in a different way and look at it from all different sides to make sure that you're not missing anything.

So as I do an evaluation of a patient, my first part is CCHPI, which is chief complaint and history of present illness. That, to me, looks like a blank page, but the thing is that - let the patient tell you what they want to tell you in their own words without your influence, right? Because then there's a lot of research that shows that the first complaint offered is not always the chief complaint. So you have to give the patient an opportunity to speak in their own language.

And then I ask about medication, and as patients are telling me medications, if I know the medication - so somebody says I take amlodipine (Transcriber’s note: Amlodipine is a calcium channel blocker often prescribe to treat high blood pressure) - well I can also check down on my list, “This patient has high blood pressure because they take amlodipine,” and you're putting together the pieces of this puzzle. But the medications are step two.

And then after chief complaint and HPI and medications, I then go system by system, symptom by symptom, and I ask every question. “Do you have any neurologic problems? By that I mean, have you ever passed out dizziness, stroke, seizure?” And you'd be amazed at how many times somebody says they don't have something, and then it turns out that they really do. And unless you're a diligent detective, and unless it's your mission to uncover every stone, then all that stuff could get missed. But you have to really ask the questions. And with COVID and dysautonomia, it's it's like multiply that times 100.

00:24:52 Jill (Standing Up to POTS):

Well, I hear that from physicians also. And some of the best physicians are finding that they can't really treat dysautonomia patients in the context of a normal insurance paid session, because it just doesn't leave time to do that kind of thing.

00:25:07 Dr. Noah Greenspan:

Right.

00:25:08 Jill (Standing Up to POTS):

So that's another challenge.

00:25:09 Dr. Noah Greenspan:

Because there's not enough time, you mean?

00:25:11 Jill (Standing Up to POTS):

Right, 'cause my understanding is that insurance will reimburse a physician for 20 minutes or something which isn't nearly enough time.

00:25:17 Dr. Noah Greenspan:

Not even close. Absolutely. And that's part of the problem with the medical system today is that insurance companies are calling the shots so they raise their rates every year. But what we get paid by insurance companies goes down every year.

But this is why so many doctors give up Medicare or give up insurance, because they feel in their hearts they want to practice the kind of medicine that they want to practice and not be dictated by people who don't really know anything or don't care anything or who believe that their first priority is to their shareholders and not the patient.

00:25:52 Jill (Standing Up to POTS):

So could I switch gears and talk about nutrition and eating for a second because your book has a brilliant section about how what's in your digestive tract affects your breathing. And what strikes me about it is that it's from a purely mechanical point of view, which I never hear anybody else talking about.

00:26:13 Dr. Noah Greenspan:

Yeah, it's mechanical is is 1/3 of it. So I view it as mechanical, and I view it as chemistry, and I view it as vascular. There's a lot of interaction between eating nutrition and breathing. And so from the mechanical perspective, if we look at it as like just anatomy and where things are located, so the lungs sit on top of the diaphragm, and the diaphragm is a dome shaped muscle, and the diaphragm sits on top of the abdominal contents.

And again, you asked about the suitcase analogy. So the suitcase analogy is that the thoracic cavity is one side of the suitcase and the other side of the suitcase is the intra-abdominal cavity. But these things are connected, because if you overstuffed one side of your suitcase, well, that's less you can put in the other side of the suitcase.

00:27:04 Jill (Standing Up to POTS):

May I just jump in and say a common situation with POTS or dysautonomia patients is that they might have gastroparesis so they might have a lot of backed up food. They may have blood pooling and so we know that in the abdominal cavity is where a large amount of that blood pooling happens and they have a higher risk of SIBO (Transcriber’s note: SIBO is small intestinal bacterial overgrowth), which would create a lot of gas.

00:27:26 Dr. Noah Greenspan:

Yep, absolutely, and again, it's not to say we know what it is. It's not to say every POTS patient is going to have that. This is why it's so important not to assume that we know - to say that these are all the possibilities, so you know what you may have gastroparesis, but not every POTS patient has gastroparesis. You may have blood pooling, but not every POTS patient has blood pooling and not every POTS patient has SIBO. But we have to look at all of these things as potential factors.

So let's just talk about all those things and why people feel bad after eating. So, from the mechanical perspective, we now have a full stomach and that full stomach is going to increase resistance.

00:28:11 Jill (Standing Up to POTS):

So that's interesting to me, because it suggests that a POTS patient’s breathing issues may stem from something that appears completely unrelated, and they may find that treating their gastroparesis more effectively, for example, or reducing gas through treating SIBO could actually improve their breathing.

00:28:32 Dr. Noah Greenspan:

So, if in between meals only half the food that's supposed to leave, leaves, well, guess what you're going to feel full sooner and mechanically, you're packing your suitcase and one of the sides is already half full.

It's the same type of thing if you have gastroparesis, or if you have gas. So gastroparesis is that the food doesn't move out. Gas is going to take space in the form of air. So if you think about those packing air bubbles that they send when something wrapped up, imagine if your suitcase was full of a giant plastic bag full of air. It's just air, but it's going to take up space from the other stuff.

So, our body is like a supercomputer that's always measuring and making adjustments, always measuring and making adjustments. So, if I lean over 6 inches to the right, my body is going to sense those changes and it's going to redirect and redistribute blood flow based upon that.

So, if you think about it like this, the body measures most pressure in the carotid sinus, which is up here (Transcriber’s note: the carotid sinus is located in the neck under the ears), the carotid arteries, and the arch of the aorta.

00:29:34 Jill (Standing Up to POTS):

So you're pointing to your neck for people who are listening.

00:29:37 Dr. Noah Greenspan:

And chest. So neck and chest.

So imagine all that food is in your gut and your lower extremities. Well, now your body saying, “Hey, you know what we're not getting any blood flow here. Wait. The pressure in my carotid sinus is low. The pressure in my aortic arch is low. We're not getting blood flow.”

So your body doesn't know the difference that you just ate like a big corned beef sandwich, or did you get shot and maybe now you're losing blood volume? So your body has to say, “We got an emergency here. Let me beat my heart fast to try to maintain cardiac output.”

The final part of this of eating and breathing - you know, the chemical side of it. So we know - you know better than anyone else - that you know not all nutrients create the same amounts of CO2, carbon dioxide. So we know that carbohydrates produce the most CO2 - 1.0. We know that protein produces 0.8. We know that fat produces the least receptors and it's going to say, “Wait a second. We got all this carbon dioxide here,” and your body doesn't know that you just had a pound of pasta. It just says, “We got a situation here. What do we do? Breathe, breathe, breathe, breathe, breathe, breathe, breathe, breathe.”

There's that, and then if we flip it back to the other system, which is if you do have asthma or if you do have asthma-like symptoms, right, one of the paradoxes, or one of the ironies, is that the harder you work to breathe, the harder it becomes to breathe.

So now we have a situation which is my gut is pushing up against the diaphragm. The diaphragm is struggling, my lungs are compressed, I have to breathe harder and faster.

00:31:15 Jill (Standing Up to POTS):

Wow, that is a neat way to think about a meal that I don't think anybody is currently talking about very much.

00:31:22 Dr. Noah Greenspan:

Yeah, I like to, I like to dwell in the obscure. When people start to make these changes, it's amazing, you know.

And then the other thing is if you talk about you know weight, weight loss and weight gain. So, another factor is protein and carbohydrates have approximately 4 calories per gram. Fat has nine. So, if you're trying to gain weight, well then you should live in the world of healthy fats because you're getting more bang for your buck. You're getting anti inflammatory. You're getting grease the wheels and send signals to the autonomic nervous system that we are OK and we're healthy.

And again, when you're short of breath all the time, or when you have difficulty eating adequate meals because when you eat you become short of breath, you eat less, so you get less calories coming in, but you're working harder to breathe, so you're burning more calories. And there's a massive mismatch there.

And likewise, you know, if you're trying to lose weight, well, then you should have less fats and you should have more protein, but the carbs generally are kind of inflammatory. The carbs are really our enemy. So again, it's always looking at the big picture and always looking at what - who are all the players here.

00:32:41 Jill (Standing Up to POTS):

I think you're so enlightened. I can't believe how many times I hear from patients who need to gain weight that their physicians just said enjoy McDonald's, have milkshakes, eat junk. You need the calories.

00:32:53 Dr. Noah Greenspan:

But your stomach doesn't care if it's liquid, solid, or fat. So if you're trying to gain weight and you're filling half your suitcase with water which has, you know it's important for you, but it has 0 calories, not only are you filling it with something that has 0 calories, but you're taking up space where we could be putting those high-ticket items.

00:33:13 Jill (Standing Up to POTS):

Yes, so when you take breathing into account, nutrition becomes a very space conscious concept which I don't think anybody else is talking about.

00:33:20 Dr. Noah Greenspan:

But very often when you talk to a cardiologist, they're going to see COVID through the eyes of the heart. When you talk to pulmonologists, they're going to see COVID through the eyes of the lungs. When you talk to Gastro, they're going to talk about it through the eyes of the gut. When you talk to neural, they're going to look at COVID through the brain. Except that COVID is not any one of those things. It's all of those things, and all of those things, believe it or not, contribute to all of the other things.

I've come up with an idea, and I’ve believed this since the beginning, which is that there’s almost like this net inflammation in the body and the net inflammation theory is that you may have some inflammation in your gut. You may have some inflammation in your lungs. You may have some inflammation in your heart. And it may be small, but it's like we have this inflammation coming from other area, you know all these different areas, and I kind of have this sense that when people hit this critical mass of inflammation, then it's just like a cutoff switch and it's almost like no matter what you do until you reset, give it enough time to heal, nothing is doing. You're not going to get better. Except the thing to realize is that, and I've seen this so many times, is that how your body manifests that inflammation is going to be different person to person.

So for example, you may have inflammation that shows itself with your gut. It may be diarrhea and/or constipation. So you get this inability to rest, you get this inability to decrease your sympathetic output, and it's going to show itself in you as diarrhea. In somebody else, it may show itself as shortness of breath. In somebody else, it may show itself as profound fatigue or brain fog, or this, that, the other thing.

So you can't say that this is what happens when you do this. It's something that you have to look at the patient as an individual. What's great for one person may be the exact opposite of what somebody else says, and that's where I think people really have to be careful. And the groups are great - there's a ton of information there. It was super needed during this pandemic. But again, keep in mind that anything that you do, any change in body status, whether it's more or different exercise, different foods, different supplements, different medications - they can go either way.

COVID in many ways is a lot like an iceberg when it comes to long haulers. It's that a lot of stuff is underneath the surface, so we can't just go by what our - what we see. We have to take into account that I may be fine at this moment doing this exercise or I may be fine taking this medication today, but there may be stuff bubbling under the surface. This that may hit that critical point and set you back.

00:35:50 Jill (Standing Up to POTS):

So I think that is great advice coming from you, who's probably seen more post COVID pots than anyone.

So I don't know if you are up for one more question...

00:36:02 Dr. Noah Greenspan:

Of course.

00:36:03 Jill (Standing Up to POTS):

So I wanted to switch gears and ask you about your support community for people with breathing problems. I'm wondering how you keep it so warm and positive and upbeat when a lot of the illness is so severe, the symptoms can be so distressing, and the suffering of many of your members is so great.

Do you have any insights?

00:36:26 Dr. Noah Greenspan:

That's a great question.

I deal with a lot of people who are dealing with a lot of very, very severe and complex illnesses or injuries, and I'm going to just give a few ideas of how, you know, I try to do it.

Number one - I feel like people should generally say what they want and do what they feel as long as it's not hurtful to other people. You know, I think too often when people are diagnosed with a chronic illness, they become this kind of black-and-white monochromatic version of their former selves that is completely devoid of any color. Art, fashion, music, life, really, and how you feel, and how you feel and what you think.

It's like the mind-body connection which we hear over and over and over again. But that's real and I think that what I try to do is I try to remind people over and over again that you are still you. You have this condition, but that doesn't take away who you are.

But in my professional life, I've recognized that the value of listening and feeling and just being there for somebody, and you know, like, especially when I was a young therapist, I started when I was 21 and I thought everything I, you know, said was funny or smart. What are their signs? What are their past diagnoses and what are their medications? Because that is completely impersonal. And that is not who they are.

I want to know about them - what makes that person tick and what can we do to enhance them as a human being or to teach them how to enhance their own lives as a human being. Like, may I speak bluntly with you? Or may I be frank with you? And I’ll say, “This is what you're doing to get in your own way.” And I think many of us get in our own way. And it's like, if we can somehow just kind of raise the awareness and help people recognize the patterns and the behaviors that cause them to shoot themselves in the foot over and over again.

Ninety percent of what I have learned by doing the wrong thing, saying the wrong thing, making mistakes, and it hasn't killed me yet. And what I try to do is say to people, “You know what? Yeah, this is a tough boat to be in.” And my goal is to very often fight alongside people and say, “You know what? You're not alone in this. I'm here. I will help you.”

I just say sometimes you need somebody to tell you it's going to be OK, and even if it's not going to be OK, it's OK to not be OK. You're not expected to feel good all the time, and I think that's one of the challenges of being in this highly internetted world where like every single aspect of our lives is curated for the ‘Gram or for Twitter or for Facebook. And it's very important for me to share my defeats and my losses and my mistakes and my bad days with people as much as it is to show my successes. You need to understand that there may come a time when I can't catch my breath and my mind might go completely blank and I may have no - I may lose all control of my senses, but if I practice it when I'm fine and then I up the stakes a little bit and up the stakes a little bit and up stakes a little bit, eventually these things become habits.

And one of my favorite quotes is by basketball coach John Wooden and he says, “Don't let the things that you cannot do interfere with the things that you can do.” And too often we get involved in this black or white thinking, and this all or nothing thinking.

And people say, “Well, you know what? I can't run 5 miles. Therefore I'm not going to walk a quarter of a mile.“ If you do nothing, you know you're in trouble, but if you do something, you may still be in trouble, but at least it's within your control, and so I always try to encourage people to do the things that are in their control.

But if something's not nurturing you as a human being from an intellectual perspective, from a heart perspective, from a soul perspective, then all the things you're doing are taking away from you really being your truest, most authentic self.

And just the final word I'll say, is another quote that I love is, “Fall down 8 times. Get up 9.” But just keep getting up. You know what I mean? Keep coming back keep trying again.

00:40:55 Jill (Standing Up to POTS):

Well, that is a wealth of wisdom and compassion and grit and inspiration.

Thank you for everything you do for POTS patients. I know that online you have some wonderful resources for people: you have lectures, you have an online bootcamp, you have support groups, you have your book, where can people find you online?

00:41:20 Dr. Noah Greenspan:

www.pulmonarywellness.org

www.noahgreenspan.com

00:41:27 Jill (Standing Up to POTS):

You're amazing Noah. It's no wonder that all your people adore you.

00:41:32 Dr. Noah Greenspan:

Well, just if it makes you feel any better, a lot of people hate me too. It's OK. You know, not all things are for all people, and so again, don't give up. You know, don't give up.

00:41:42 Jill (Standing Up to POTS):

Thank you so much, Noah.

00:41:43 Announcer:

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