Understanding POTS and Why Disability Claims Are So Difficult (POTS Part One)

Welcome to Season 2, Episode 10 of Winning Isn't Easy: Navigating Your Social Security Disability Claim. In this episode, we'll dive into Understanding POTS and Why Disability Claims Are So Difficult (POTS Part One).

Postural Orthostatic Tachycardia Syndrome (POTS) is a complex and often misunderstood condition that affects the autonomic nervous system, disrupting heart rate, blood pressure, and other automatic functions. For those living with POTS, everyday activities like standing, walking, or concentrating can trigger debilitating symptoms. Despite its impact, POTS is frequently overlooked in Social Security Disability claims. Many assume that a diagnosis or a doctor’s recommendation is enough to qualify for benefits, but the SSA requires far more detailed evidence. In this episode of Winning Isn’t Easy, we break down what POTS is, why post-COVID cases are increasing, and how these claims are evaluated. We also explain why POTS-related disability claims are often denied, what evidence the SSA looks for, and how consistent, well-documented limitations can strengthen a case. By the end, you’ll better understand how to navigate a system that often struggles to recognize invisible conditions.

In this episode, we'll cover the following topics:

One - What Is Postural Orthostatic Tachycardia Syndrome (POTS)?

Two - Post-COVID POTS and the Growing Disability Population

Three - Why POTS Claims Are Routinely Denied

Whether you're a claimant, or simply seeking valuable insights into the disability claims landscape, this episode provides essential guidance to help you succeed in your journey. Don't miss it.


Listen to Our Sister Podcast:

We have a sister podcast - Winning Isn't Easy: Long-Term Disability ERISA Claims. Give it a listen: https://wiedisabilitypodcast.buzzsprout.com


Resources Mentioned In This Episode:

LINK TO YOUR RIGHTS TO SOCIAL SECURITY DISABILITY: https://mailchi.mp/caveylaw/your-rights-to-social-security-disability-benefits

FREE CONSULT LINK: https://caveylaw.com/contact-us/


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Please remember that the content shared is for informational purposes only, and should not replace personalized legal advice or guidance from qualified professionals.

Transcript

Nancy Cavey [00:00:11]:
 If you think a POTS diagnosis automatically guarantees you your Social Security disability benefits, I want you to think again, and I want you to understand why you could save several years of frustration. Welcome back to Winning Isn't Easy: Social Security Disability Benefits. This is the podcast where we break down everything you need to know about navigating the Social Security Disability Claims Process. I'm your host, Nancy Cavey. Before I get started, I've gotta give you a legal disclaimer. This podcast isn't legal advice. The Florida Bar Association says I've gotta tell you that. And now that I've said this, nothing will ever prevent me from giving you an easy-to-understand overview of the Social Security Disability Claims Process the games that are played, and what you need to know to get your Social Security disability benefits.
 
 Nancy Cavey [00:01:01]:
 So off we go. Postural orthostatic tachycardia syndrome, or POTS, is a complex and often misunderstood disorder that affects millions of Americans. Yet I will tell you, it remains largely invisible to Social Security. Uh, the Social Security Administration doesn't really understand POTS. Now let's talk about what POTS is. At its core, it's a malfunction of the autonomic nervous system, which is the system that is responsible for regulating your heart rate, blood pressure, body temperature, and of course countless automatic processes your body performs without thought. For those living with POTS, simple actions like standing up, walking a short distance, or even concentrating can become a daily battle against debilitating symptoms. Symptoms.
 
 Nancy Cavey [00:01:50]:
 Now, one of the ways I try to explain this to the Social Security Administration is the actual name POTS. So let's break this down. Postural refers to your body's position. Orthostatic is talking about the term meaning standing up. Tachycardia is a rapid heartbeat, and syndrome is a collection of the symptoms that can make normal life challenging. But despite the clarity of the medical definition and what I think is a practical definition, There are lots of misunderstandings when it comes to navigating the Social Security Disability claims process. Now, many people think that a doctor's diagnosis or a recommendation to stop work is enough to get your Social Security Disability benefits. But as a seasoned Social Security Disability attorney who has handled a lot of POTS cases, I will tell you that the reality is much more complicated.
 
 Nancy Cavey [00:02:42]:
 So in this episode, I'm going to break down what POTS really is, I'm going to explore post-COVID cases that are increasing, uh, and who are coming to us with POTS complications. And I'm going to talk about why Social Security disability claims are routinely denied. Now, whether you're living with POTS, supporting somebody, or simply want to understand the challenges that this community faces, I hope this episode will give you the knowledge you need to navigate a system that too often fails to see the full picture. So let's get started. I'm going to talk about 3 things today. First, what is POTS? Two, post-COVID POTS and the growing disability population. And three, why POTS claims are routinely denied. But before we get started, let's take a break.
 
 Nancy Cavey [00:03:31]:
 And when you come back from this break, please bring a piece of paper and a pencil or a pen because you're going to have a wealth of information I want you to, uh, write down and then reflect upon, particularly if you are going to be applying for Social Security Disability or you're in that Social Security Disability claims denial process. Got it?
 
 Narrator of Disability Insurance Advertisements [00:03:51]:
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 Nancy Cavey [00:04:15]:
 Welcome back to Winning Isn't Easy. So let's start with the obvious question: what is postural orthostatic tachycardia syndrome? Starting with the basics again, but we're going to take this apart. Now, POTS can affect between 1 and 3 million Americans, and it's a disorder of the autonomic nervous system. That system regulates the heart rate, blood pressure, sweating, and body temperature. Now, this system controls and the functions that your body performs automatically without conscious thought. And when the system malfunctions, the effects can be widespread and debilitating. Now, POTS, I think of as a blood circulation disorder, and it's characterized by two defining features. So let's talk about the symptoms, and I think you should be writing these down, and I'll explain why in a minute.
 
 Nancy Cavey [00:05:10]:
 The symptoms can include lightheadedness with or without fainting, difficulty thinking and concentrating, often referred to as brain fog, fatigue, exercise intolerance, headaches, blurry vision, palpitations, tremors, nauseous. Now, these symptoms aren't just occasional inconvenience. For many people, they're daily, and they're unpredictable, and they're severe enough to impact basic functioning. Now, the second thing we want to talk about is the abnormal heart rate response to standing. In adults, this means that the heart rate increase of at least 30 beats per minute when moving from a horizontal position to standing, measured within the first 10 minutes of standing or during a tilt table test, is indicative of POTS. Now, just as important as it is to understand what POTS is, I think it's important that you understand what POTS isn't. Um, and I think this will impact the way that you give a history to your doctors, which I think is also crucial. So POTS is diagnosed only when the orthostatic hypotension is ruled out.
 
 Nancy Cavey [00:06:25]:
 Orthostatic hypotension is a form of low blood pressure. POTS is also not diagnosed if the symptoms are caused by an acute dehydration or blood loss. So again, I want to talk about the name itself. Now, before I do that, I also want to give you a formula that I think is important for you to understand, which will frame how you're telling your doctor the story of your symptoms and functionality. So I want you to write across this piece of paper that I asked you to bring. The word symptoms, symptoms, plus location of the symptoms, plus the duration of the symptoms, plus the intensity of the symptoms, plus the frequency of the symptoms. And then an example of how that particular specific symptom impacts your ability to function. So now that we've got this basic formula for how to tell your story to the doctor, Let's talk about the word or abbreviation POTS.
 
 Nancy Cavey [00:07:32]:
 So postural refers to the body position. So as you write your symptoms down, it might be that, of course, you have symptoms based on the position of your body. I have clients who have symptoms when they go from just sitting to standing, but I also have clients who have symptoms when they recline. So I think it's helpful to identify the posture or postures in which you begin to have symptoms. Number 2, orthostatic refers to standing upright. Again, in my experience, the postural issues will also impact the presentation of symptoms, be it standing up, turning side to side, bending over, or even, as I said, being reclined. But normally what we'll see is that movement upwards, if you will, begins to, how shall I say, cause symptoms. Now, the other symptom that of course that's in this definition or abbreviation is tachycardia, and that refers to an increased heart rate.
 
 Nancy Cavey [00:08:45]:
 I like my clients to be able to tell Social Security, and if we have to go to a hearing, a judge, what the resting heart rate is and how, based on the various postures, that heart rate might increase. And then, of course, we want to talk about the collection of the symptoms. And I ran through the laundry list, if you will. But I want you to write those symptoms down and talk about how those symptoms occur. What are the symptoms? How do they present? In terms of posture or activity? What is the nature of the, of the heart rate changes? And then, you know, what are the other symptoms that you have? Dizziness, nauseousness, spinning, whatever the collection of symptoms that you have. And people will experience these symptoms differently. Now, why is that important? I will tell you that's important because I have been long of the opinion that Social Security claims examiners don't analyze 3 components. Number 1, what happens when the body position changes, be it from sitting to standing or even reclined? What happens when those activities occur? What are in fact the symptoms? And then what happens to the heart rate? What do these changes do in terms of your ability to function? Now I know I'm asking for a lot of detail, but I will tell you that many times I read medical records and none of this is addressed in the medical records.
 
 Nancy Cavey [00:10:20]:
 And as a result, I don't think that the claims examiners, or even sometimes judges, appreciate what POTS is in terms of the, the definition— postural orthostatic tachycardia syndrome— but how those symptoms present with postural changes and heart rate changes. So I really want my clients to give a really good detailed history, and I find that that improves our chances of getting Social Security disability benefits. I know it is a pain, but I think these cases can be difficult to prove, uh, even with a positive tilt table test because they don't— they meaning Social Security— just doesn't— don't understand the symptoms and their presentation and impact on your functionality. Okay, now that I've given you that homework assignment to think about, we're going to take a quick break. Winning isn't easy. Post-COVID POTS and the growing disability population. Now, POTS isn't rare, but I will tell you it is becoming more common. What do I mean by that? Before COVID I tried POTS cases, but I will tell you that studies show that 2 to 14% of people who contract COVID go on to develop POTS.
 
 Nancy Cavey [00:11:51]:
 And in other studies, as many as 30% of long COVID patients meet the diagnosis of POTS. So obviously, as a social security disability attorney, I'm seeing a significant increase in the number of POTS cases that we handle. And I will tell you, it's not a minor issue. It's a growing public health and disability crisis. So let's talk about post-COVID POTS because obviously I'm not a doctor, but I think that there are some different presentations. And again, these are the kinds of things you should be writing down in your symptoms and functionality document that I told you to create. So post-COVID POTS can create fainting. But again, I see the circumstances regarding the fainting in different situations with post-COVID patients.
 
 Nancy Cavey [00:12:47]:
 There's an irregular heartbeat, there's dizziness that in many cases seems to me to be more severe. Then of course there's the fatigue that doesn't improve with rest. Now that of course can be a crossover with the basic symptoms, if you will, of Long COVID. But one of the most common and disabling symptoms is the marked increase in the heart rate when standing. And that can make it impossible to sustain employment, particularly any job that requires standing, walking, concentration, or consistent attendance. But it also can involve jobs that require postural changes, not only from standing to sitting but side to side, bending over. And that's important because I will tell you that, um, Social Security will often say at step 5 that people can do stupid jobs like being a surveillance system monitor. They can be a person who sorts nuts and bolts, or they could be a person who address this envelope all day.
 
 Nancy Cavey [00:13:52]:
 Now, that— at least two of those jobs require a lot of postural changes. And so I think it's really important that you're documenting in your medical records all the postural positions that will cause you to become symptomatic and how those symptoms impact your ability to function, because I would like to try to head off that step 5 denial by trying to show the postural changes, like the kinds of postural changes in the dumb jobs that Social Security identifies, are occurring, and occurring with such frequency that they would prevent your ability to do other work. Now, if your physician has told you that you can't work, you might be eligible for Social Security benefits, assuming that you have earned enough quarters of coverage. Now, what I want to do again is to explain to you that just because the doctor diagnoses POTS and says you can't work is not going to win this case. They are going to again look at your medical records. They want to see the history of your symptoms or the onset of your symptoms. They want to understand the Long COVID diagnosis. They want to understand any complications of the Long COVID.
 
 Nancy Cavey [00:15:12]:
 What do I mean by that? We know that Long COVID can impact many body systems, from the heart to the lungs to the liver to the kidneys to the neurological system. And so my clients who are long COVID clients aren't just presenting with long COVID, they're having generally system-wide involvement, and more often than not, multiple system involvement. So as you are giving your doctor the history, we want to talk about, again, the symptoms, if you will, by body systems. Or you can use my formula, which basically should cover all of your symptoms so that that great medical history is there. This is when I was exposed to COVID. This is— these are my symptoms. This is the testing that's confirmed this diagnosis. These are the symptoms and systems that are involved.
 
 Nancy Cavey [00:16:10]:
 There. This is the duration— I'm sorry, the location, duration, intensity, and frequency of my symptoms. And here are examples of functional problems I have, not only from the underlying Long COVID but from any systemic system involvement. Again, lots of documentation, but it is really, really crucial that this claim be well developed so that you can prove that at step 4, you can't go back to the lightest job you held in the 5 years before your claim has been decided. And at step 5, you can't do other work in the mythical, hypothetical, not real-world national economy in view of your age, education, skills, and those restrictions and limitations. Got it? Let's take a break.
 
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 Nancy Cavey [00:17:24]:
 Welcome back to Winning Isn't Easy. I'm sure you're really interested in why POTS claims are routinely denied and what you can do to submit a winning POTS Social Security disability claim. Now let's talk about the basics first. Social Security uses a 5-step sequential evaluation test, and they use this test at every stage of a case: initial application, the request for reconsideration if the claim is denied, the request for hearing if the request for reconsideration is denied. So let's talk about the first steps. First, you've got to have a medical condition. and that condition has to be severe, uh, and expected to last more than 1 year. Now, that medical condition has to be a medically determinable impairment.
 
 Nancy Cavey [00:18:11]:
 Basically, Social Security is looking for objective evidence of diagnostic testing, physical exam findings, and other documentation that would corroborate that you in fact have a medically determinable impairment. Then they're going to look at the severity of the condition and ask whether this condition is so severe that it's going to last at least a year or more. Now, in my experience, most people with POTS can satisfy the first two steps, but the problem starts at step three. At step three, the Social Security Administration evaluates whether your condition meets or equals what's called a listing. We all attended high school biology, and Social Security adapts the system-based approach that we learned in high school. We learned about cardiovascular issues, pulmonary issues, digestive issues, neurological issues, cognitive issues. And Social Security takes a systems-based approach to the analysis of a POTS claim. But unfortunately, there is no specific listing for POTS.
 
 Nancy Cavey [00:19:17]:
 What I see is that Social Security will evaluate POTS under a cardiological neurological listing. And often I will tell you, either the medical records don't document the necessary elements of a listing, or Social Security doesn't understand what the presentation is, at least from a cardiological standpoint for POTS, because they're looking for all sorts of cardiological issues when in fact you're not going to have an abnormal EKG. Or a Bruce Halter monitor test. So in my experience, you're not gonna meet a Listing even if you might have cardiological issues. That isn't to say we aren't gonna try, but I will tell you most cases are decided at step 4 and 5 of the 5-step sequential evaluation. At step 4, you have to prove that you can't go back to the lightest physically demanding or cognitively demanding job you held in the 5 years before the claim is decided. And that's fairly easy to prove, but it's step 5. This is the problem.
 
 Nancy Cavey [00:20:22]:
 Now, the test is, can you do other work in the hypothetical, mythical, not real-world national economy in view of your age, education, skills, and functional limitations? And this is where cases start to fall apart. Now, again, Social Security wants objective proof of that medical determinable impairment. They wanna see the objective signs, the laboratory findings, clinical testing, but they also want to understand the severity of your medical condition and why you have functional limitations. I think that it's really important that you have your doctor fill out a form that we Social Security lawyers have created called a POTS residual functional capacity form. It's been specifically designed for POTS and asks the relevant questions. Now, we try to establish that you meet a Listing. And as I said, that's really not the case. But it asks, in my view, relevant questions about the functionality of a POTS patient.
 
 Nancy Cavey [00:21:21]:
 The ability to sit, stand, walk, stoop, bend, change positions, postural changes, the impact of standing, the need to sit down or to be flat, the impact of using treatment methodologies, including, of salt tablets because that means you're drinking fluids and you're going to the bathroom frequently. That's going to result in breaks. You also have cognitive issues that need to be addressed, uh, being off task, absenteeism. Those are the kinds of things that are addressed in a POTS residual functional capacity form. But let's say you are having pulmonary complications, particularly if you have long COVID case. We also want your doctor to fill out a pulmonary function test, residual functional capacity form, documenting the results of, for example, pulmonary function tests. It might be that you have neurological complications. So we also want the neurologist to fill out a neurological RFC form.
 
 Nancy Cavey [00:22:26]:
 POTS cases, particularly long COVID POTS cases, are just, they are not simple cases. They are medically complex, they are factually complex. And the idea here is in combination with that excellent interval history you're giving and the residual functional capacity form, Social Security, and if necessary, a judge, should be able to understand not only why you meet the 5-step sequential evaluation test, but why you're entitled to your disability benefits at the time the claim decision is being made. So that you don't have to go through a claims denial or a denial of that request for reconsideration and end up in front of a judge. And it's not where we wanna be. We wanna try to win that case during the initial application stage. And in my experience, it's that fantastic interval history based on the formula I gave you and a winning residual functional capacity form that will make all the difference. That's the foundations of a successful POTS claim.
 
 Nancy Cavey [00:23:25]:
 Got it? Well, that's it for this episode of Winning Isn't Easy. If you found this episode helpful, please take a moment to like our page, leave a review, share it with your friends and family, and please subscribe to this podcast. Join us next week for another insightful discussion of Winning Isn't Easy. Thanks for listening.