You Have Every POTS Symptom, But Can't Get Diagnosed. Here's Why

Added: 2026-05-30

[00:00:00]If you've ever been told you don't meet all the POTS criteria, even though you have all the symptoms, then this video is for you. For most people in the early stages of trying to figure out what is going on, the main thing that you're looking for is what is the diagnosis?

[00:00:14]Tell me what I have. I need to understand where do I go from here? And you go, you search and you see like I have symptoms that kind of line up with all these things. But then I go do the testing. And maybe you don't quite meet the criteria. You don't fit in the box perfectly. That can be super frustrating. You can get frustrated with a doctor. You can get frustrated with like where to go next. That's what this video is for. Today, we're going to introduce kind of a new layer in dautonomia. Dautonomia is kind of a general term to describe things that affect your autonomic system. POTS fits into that, but it's not the only one.

[00:00:47]Today, we're also going to introduce the idea of oos, orthostatic cerebral hypoprofusion syndrome. So, you can understand dysotenomia. there's a lot of room to run and understanding a little bit deeper tying to the mechanism more so than the symptoms is going to help us be able to help you more. I first became aware of this syndrome oos back when I was trying to work with people with POTS where we were seeing people that say this is kind of what I think I have but when I go to the cardiologist I can't get a diagnosis it doesn't quite fit what is going on and what we were picking up on was exactly what they were saying. Heart rate is not like demonstrably bad when you get on a tilt test. Blood pressure stays pretty normal but you can see the symptoms develop. We could watch with that bedside testing.

[00:01:33]we could kind of push their brain and see it fail. Like they couldn't do math now and they'd start to stutter and now I'm getting foggy or lightheaded or my vision starts to change. So we could observe that something was happening but it didn't fit the diagnostic criteria.

[00:01:47]well insteps of beautiful paper and then a subsequent book by Peter Novak where he he kind of came to the same conclusion and realized like there's this whole subset of people that have a different response where that hypo profusion happens where I'm not able to get as much blood flow to my brain but rather than trying to make up for it by increasing the heart rate the system actually doesn't have a big heart rate response doesn't have is able to maintain a blood pressure response but what we see is that the cerebral blood flow is the thing that changes. So it's like, you know, a lot of people with POTS, it's like cerebral blood flow changes and the heart rate goes up. And in this case, you have cerebral blood flow changes, but the heart rate doesn't go up. And as you can probably figure out, you're going to treat those two cases different. So what makes POTS and OOS similar and what makes them different? In both cases, they're similar in the sense that we're not able to maintain cerebral blood flow, blood flow to your brain when we are upright.

[00:02:46]specifically and that's the main catalyst is that change between being laying down and being upright. The reflexes that should kick in, the automations, they're not working correctly. Now, what makes them different is in number one, why is that happening? Remember, there are multiple reasons why you may or may not be able to adequately get blood flow to your brain. Right? So, that's number one. And then number two is how is your body best tuned to respond to that? So, you know, depending on what your history is, were you a runner? Were you a dancer? Were you a software technician? Like, what was the starting place state of your conditioning system? And then other things like, have I been injured? Have I, you know, whacked my head? Did I fall snowboarding? Did I get in a car accident? All of these things are going to dictate what the the landscape is in your body to start with where your body can say, "All right, how am I going to solve this problem? What things are working? What things are not?" And that's going to determine then how am I going to try to solve this problem? Am I going to do it by increasing my heart rate to max capacity to try to maintain blood flow and I just can't quite get there? or is it efficient in a different way where it doesn't need to crank the heart rate as high, but it still fails to to get like that last mile of blood flow to the brain. But it's important to remember that in both cases, POTS and OOS, we have a very similar symptom profile. So a lot of what people experience is the same, which is why people will commonly say like, I think I have POTS, but my heart rate isn't meeting that 30 beat per minute criteria. In both cases though, we do see that the cerebral blood flow drop is present. When we measure that with transcranial Doppler ultrasound, what we're looking for is in that first minute of the tilt test, we want to make sure that people aren't losing more than 10% of the blood volume that they get when they lay down. So, if I have uh you know 100 as my as my blood flow when I'm laying down, I want to make sure that I'm at least 90% of that when I go upright. We don't like it when it goes below that in the first minute and then by minute two we don't want it to drop by more than 15%. But what we see is that's kind of what happens in these cases where we have POTS or orthostatic cerebral hypoprofusion is that we have a hard time. The main failure is that we're not able to sustain that same level of blood flow when we're upright as we are when we're laying down. So if we're looking at the difference between these two conditions, the main crux of the difference is whether or not you cross the threshold of having a change of 30 beats per minute in your heart rate from resting, laying down to being upright. So then the question could should kind of be from there is why 30 beats per minute? Where does that come from? What is special about that 30 beats per minute? And that's actually an important question and I'm not critical of of how we came up with it. It's kind of like just a a thing that people develop over time. But we've got to go back actually we're almost 40 years to kind of look at the first kernel of where it comes from. So there was a study published in 1987. It was in it was about disorders of circulation and orthostatic intolerance. They basically looked at people men and women and kind of tried to triangulate around like where does it become problematic? and they kind of landed on something around 28 beats per minute as having this like 97.5 percentile fit. So like they they measure all these people, they figure out where do 97.5% of them like where do they tend to live and then who's outside of that and that's kind of where they draw the line which makes sense. But then you have to think about like well how many people do they measure and were they all people that had pots? Well probably not because we hadn't actually even come up with the word pots by then right? So then that gets carried forward and Dr. Low who's kind of credited with with naming POTS 1993 does a study where they looked at people in the medical field and they looked at them on a like a 1 to three minute test without a rest period on the front end and they kind of came up with you know these two different numbers. for men, you know, we have here it was 38 beats per minute.

[00:07:03]For men women, it was 31 beats per minute. But these were all kind of people within the medical community that had this quick tilt test and then they kind of pulled the numbers from that and then again um they redid the test in 97. The number was the the 97.5 number again 10 years later was actually between like 34 and 40. And so you end up in this world where that 30 beats per minute number to define POTS doesn't actually come from measuring people that have pots as we currently define it which is problematic. So it brings up the question of like is that even probably the thing that we should be using? So I'm going to give you like a way to think about it. Not to say that we should throw that out or get rid of it, but it helps us be a little bit more oriented toward fixing the problem if we if we kind of like use that anchoring point a little bit less. So, let me let me show you what I mean. So, if we have somebody that they start out heart rate is 70 beats per minute and then on a tilt test it goes to 90 beats per minute. They don't qualify for POTS, but let's say they do have cerebral hypo profusion. Here we get a decreased cerebral blood flow and they start to feel symptomatic. Okay. So in that case we would say well you don't have POTS but obviously we see that the heart rate is kicking up to try to manage that. So what do we do? Okay. How is that different then from someone who has a starting heart rate of 90 beats per minute but then on their tilt test they go to 110 beats per minute. They both just have a 20 beat per minute change.

[00:08:43]They both are going to have cerebral hypoprofusion but they're telling you very different things about the way that person's body is respond. They're using a different efficiency that somebody that it's starting at 90 it has to go to 110. Okay. So we want to understand to what degree is my brain able to create a good signal to my heart number one. But then number two what is the efficiency that my heart has? So there's this there's this interesting thing that happens. So like as your heart rate goes up, the amount of blood that it's able to pump per beat is actually going to like it's going to meet reach a like an optimal and then it's going to start to go down. So at a certain threshold of your heart rate, you're kind of at like this is the peak amount of blood that I can deliver. And that's going to be different for different people because it also depends on how fast we can return the blood back to your heart. So everybody's got that little sweet spot, but if for one person it's at 90 beats per minute, that tells you something is happening different than somebody that's at 110 beats per minute. And so that's really important. Then we can start to think about how they're related, how stroke volume is related, how venus return is related, how barrow receptor activity is related, how autoregulation is related, and all those things start to then become really important and useful. But then this is also different than somebody that starts at 100 beats per minute and then goes to 120 beats per minute. Right? In all of these cases, none of them have POTS, but they've all got symptoms and they've all got cerebral hypoprofusion, but they're all starting from a different place. If I am laying down and my heart rate is cranking away at 100 beats per minute, that is telling me that my efficiency at rest is way different. My brain is saying we have to crank at 100 beats per minute to be able to just rest. That is a different experience, right? You're probably going to have a slightly different symptom set. There's probably going to be a little bit more of that sense of anxiety or that internal vibration. There's probably going to be more of that unease when you're laying down even than someone whose heart rate resting is at 70 beats per minute. So in all of these cases though, that 30 beats per minute part, if you don't meet it, it kind of becomes not that useful because the symptoms you experience are still the same. So the only real way that you can differentiate between someone that has POTS and someone that has OOS is if we're measuring cerebral blood flow. And we use transcranial Doppler ultrasound is kind of the gold standard for that.

[00:11:16]Allows us to measure both the left and right side. And we can do it dynamically. So we can put people on a tilt test, but then we can also notice does it change when people move their head, change their head position, when they dual task, they do some math, things like that. Does that also have an impact here? Because it's very helpful in dilating dial dialing down to the pathology. But the other thing to consider is if we don't have that transcranial Doppler ultrasound, the problem that we run into is now we're back to that 30 beats per minute problem. Because if I'm not measuring the cerebral blood flow, the only tool that I have to give you a diagnosis is watching to see if your heart rate goes up enough to give you a diagnosis at that arbitrary 30 beats per minute. So this part right here is super problematic because what it means is that you can even go get a conventional tilt test. You can wait a couple months to get it. It's very exciting. But if you don't meet that number, it's kind of the cut off between whether or not anybody is going to pay attention to you or not. So, we've been talking a lot about the fact that actually that heart rate number doesn't mean much. The cerebral profusion part is the part that really helps us understand you and understand how to help you. But if we're not measuring that, we're stuck with that 30 beats per minute. And if you don't meet that, you basically wash out.

[00:12:37]And that is one of the biggest problems that people with dysotonomia at large are facing because we're using an arbitrary number to basically cut people in or out of any care whatso.

[00:12:51]So what can we take away from this understanding from pots and oos? Well, number one is that they probably don't deserve to necessarily be two different labels because if we're really paying attention, they both are telling the story of cerebral perfusion. That's number one. And then number two is that we want to make sure that we're getting adequate testing for people so that we are able to look at the cerebral blood flow because it's going to be the biggest thing that's going to allow you to be able to get the quality of care that actually moves the needle beyond symptom management into treating root cause. And that's probably a good time to talk about our POTS road map because that's kind of what we're trying to help people work through. It helps you organize what sort of things are things that we can solve very easily on the front end. How can I work through that?

[00:13:38]That's very easy. Once we have to start getting into more nuanced territory, how do I know which tests are worth spending money on? How do I know which order to do them? How do I know what I should be paying attention to along the way so that I'm using my resources effectively, but then also moving myself into a position where I solve this problem?

[00:14:00]Most of you that are dealing with this autonomia are probably pretty young. We don't want this to be a lifetime event.

[00:14:06]We want to solve it as quickly as possible, which means systematically moving through, solving problem by problem until you can move forward and move out of it. So, the POS road map is just one tool that helps you to be able to work through that. It's free. I hope you find it useful. If you're looking to understand a little bit more about what's causing your symptoms, please check out our content, subscribe, and hopefully there's something there that can help you uh break through and figure out how to solve