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The Pediatrician Next Door - Simple Advice on Parenting and Family Health
All in Your Head? POTS: The Diagnosis Doctors Miss
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- [00:00]
A
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If you're new here, I'm really, really glad you found the show. This is where we talk about the parts of kids health that don't always make sense. I am always fascinated by cases where something is clearly wrong, but no one can figure it out. You know, like medical mysteries and today's episode is one of those kinds of stories. At first this story might sound like a really rare and specific diagnosis, like something you've never heard of. But I can almost guarantee that half through this episode, something's going to click and you're going to be like oh wait, I know someone with this. This condition can appear in a lot of different ways. But here is a classic example. This is a 15 year old who was a very healthy soccer player. And she does great in school. But recently, when she stands in line at school, her heart will, like, suddenly start racing and she'll get really dizzy. By lunchtime, she's totally exhausted. She's not, like, sick exactly. She just can't function the way she used to. So she stopped playing sports. And she has been missing a lot of school because she's too tired. And every test her doctor does comes back normal. And she was told it's just anxiety, maybe some dehydration or stress. And the doctor says there is nothing to do, she just needs to push through it, maybe get a therapist. But there actually is something very wrong with her, and it can be treated. We're talking about a condition that affects a very specific part of the nervous system. And it's real, but it's complicated. And not all doctors know about it. We still don't fully understand this. All right, are you ready to get smarter? I'm Dr. Wendy Hunter, and I'm the pediatrician next door. I'm that doctor friend you call for practical advice about your kid's health. I mix the science of medicine with the reality of parenting. Back to our soccer player. She has a problem with her body's autonomic nervous system. That's the system that controls the things that you don't consciously control, like your heart rate, blood pressure, blood flow. For most people, that system works quietly in the background. You know, you stand up, your heart rate goes up for a minute, and then your body adapts. You don't think about this. For kids like our soccer player, it doesn't adapt well. When she stands up, her heart rate jumps too fast and stays up. And a lot of other things happen. And we're going to get to that. This pattern has a name, and it's called pots, which stands for postural orthostatic tachycardia syndrome. Pots. It falls under a larger group of conditions called dysautonomias, disorders of the autonomic nervous system. Most people haven't heard of it, and many doctors don't get much training in it either. That's why I wanted to talk with Dr. Jeff Borris. Dr. Boras is trained as a pediatric cardiologist, and after more than two decades caring for kids with these symptoms, he's also a pediatric autonomic specialist. He first started noticing this as a cardiologist. He was seeing a lot of kids with fainting what we call syncope and severe lightheadedness. Then the cases he saw got more and more complex. So he learned about the dysautonomias. Here's how he explains it.
- [05:16]
B
Dysautonomia is an umbrella term. It includes pots. It includes inappropriate sinus tachycardia. It includes the. And there are multiple of these, the hereditary sensory autonomic neuropathies. There's probably about six or seven of those, or eight. It includes a bunch of adult disorders, including pure autonomic failure, multiple system atrophy, diabetic autonomic neuropathy, Parkinson's disease. There are multiple different dysautonomias out there. So dysautonomia, for all our listeners, Dysautonomia is not a diagnosis. It's a description of a problem. But an actual diagnosis would be more like syncope and POTS and orthostatic hypotension, paf, msa, those kind of things.
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A
The reason this is so on my mind, obviously there's a couple reasons, but one is that so many patients feel like they're not being taken seriously.
- [06:14]
B
No question.
- [06:15]
A
Right? So coming to you, like, tell me about that. And like, is this real?
- [06:21]
B
It absolutely is real for multiple reasons. One, the symptomatology for a lot of this is invisible. It's hard to demonstrate lightheadedness, fatigue, cognitive dysfunction, or brain fog, insomnia, nausea, those kind of things. Number two, especially in pots, we don't have a biological marker for this, so it remains a clinical diagnosis and it's a syndrome. So we don't understand in 2026, we don't understand the underlying pathophysiology still. We think that for most, if not all patients, there's probably some aspect of autoimmunity, but, you know, haven't proven that yet. The third thing that makes it problematic is that there is disproportionate female predominance. And females, both girls, adolescent females and women, have been marginalized by the medical establishment for decades. We have. But to think back to the 1960s with the diagnosis of hysteria, right? And people were told that it was their uterus. These women were told that it was their uterus, and they were hysterical and all this other stuff. And then the CAT scan came along, and what did we find? Evidence of multiple sclerosis. Right? And so all of a sudden, all these hysterical, quote unquote, all these hysterical women actually had a neurologic disease. I think if we can ascertain a. An actual underlying pathophysiology, that would be really helpful. It can take multiple physicians, multiple providers before getting a diagnosis. There was a paper that was published about a decade ago that said that half of patients saw at least seven providers before getting a diagnosis, and 23% saw at least 10 clinicians before getting a diagnosis. I think one of the things that's interesting now is that there has been a lot more recognition. There has been a lot more people have heard of pots. More, they don't necessarily know how to diagnose it appropriately, but at least they've heard of it more. And so there is some increased thought that people are recognizing it. The other thing that goes with that, though, pre pandemic estimates were about 1 to 3 million people in the United States were affected with POTS. Post pandemic, probably more like 3 to 8 million. So at least 2% of the general population. It's a lot.
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A
Wait, what more cases since the pandemic? I have to know why. I mean, what causes pots? Do we have any clues?
- [09:06]
B
We do know that infection is probably the number one trigger for pots. We see this a lot and that can be anything. It can be an upper respiratory tract infection, gastroenteritis, sinusitis, Lyme disease, Epstein Barr virus. You know any of the above?
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A
Guess who had mononucleosis caused by Epstein Barr virus a few months before I saw her? My 15 year old soccer player. One of the most consistent patterns we see with POTS is how often it starts with an infection. What we think is happening is that the infection acts like a trigger. It doesn't cause POTS by itself, but it seems to flip a switch in the autonomic nervous system. Researchers think that immune activation plays a role after infections. Some patients show signs of inflammation and autoimmune activity or abnormal nerve signaling. In simple terms, the immune system just stays too revved up. Covid made this pattern much easier to see. Since the pandemic, doctors around the world have reported a sharp increase in adolescents and young adults developing POTS like symptoms after Covid. That doesn't mean Covid is unique, but it gave us a clearer window into something that was already happening with other viruses. Not everyone who gets a viral infection develops pots. Obviously that tells us there's probably a susceptibility involved. We still don't have every answer, but we're no longer guessing that this is just anxiety. The post infectious link is one of the clearest patterns we have. But I have to say that all the symptoms he has listed I've seen in another type of patient. So I had to ask, do you Ever see POTS or other dysautonomias after a concussion?
- [10:48]
B
Yes. Did I answer that quickly enough?
- [10:50]
A
Yeah.
- [10:51]
B
So infection is probably the number one, number one etiology followed by concussion. And concussion is absolutely a noted trigger for this. Other triggers include surgery, non concussion trauma, a growth spurt, menarche. There is some possibility, and this is debatable or discussable, that the human papillomavirus vaccine may actually trigger POTS in a small proportion of patients.
- [11:28]
A
The concussion thing's interesting because as you're describing the symptoms, I'm thinking about some of my patients who have post concussion syndromes, but we don't call it dysautonomia.
- [11:38]
B
Well, so the thing to keep in mind, right, is the concept of dizziness. Just like dysautonomia, dizziness is an umbrella term. It includes lightheadedness, which is that feeling like you're going to pass out, but it also includes vertigo. And so I actually explain this to my patients. And it's interesting because, as you know, in post concussion syndrome, two of the main findings that you can have are vestibular dysfunction with vertigo and convergence disorders, convergence insufficiency, convergence excess, those kind of things. And I started asking my patients, is there a history of head trauma or concussion? And then asking about vertigo and conversion disorders. But even in the absence of head trauma or concussion, I'm finding patients who have convergence disorders and vertigo as well.
- [12:35]
A
A convergence disorder is a problem with how the eyes work together up close, like when you're reading or looking at a phone or focusing. The eyes don't converge the way they're supposed to. And it is common after a concussion. It can cause headaches, dizziness, nausea, blurred vision, fatigue, which means it can look like pots. And sometimes a kid has both. This overlap is what makes these kids really hard to sort out. But I can imagine that a big hit to the head could make your autonomic nervous system not work right anymore. Anyway, that brings us to the next question. How can you diagnose these things? I mean, for pots, presumably you have to, like, measure some orthostasis. Right. Like they have to be orthostatic.
- [13:19]
B
Sure. So it's, it's not your typical adolescent dizzy or syncope patient. The typical patient might have some dizziness when they stand up. That goes away in the first minute. That actually has a name that's called immediate orthostatic hypotension. There are patients who don't drink enough or don't have enough intravascular volume, and so they have cerebral hypoperfusion and they either get really lightheaded or they pass out, but the rest of the time they're fine. POTS is different. These patients tend to be much more debilitated chronically and much more of the day. And they have symptomatology that covers multiple systems. So cardiovascular, neurologic, gastroenterologic. So these patients have a lot of lightheadedness. They may not actually have a lot of syncope. They might, but they might not. Fatigue, cognitive dysfunction, insomnia, headaches, nausea, GI dysmotility, symptoms like constipation, early satiety, abdominal pain. They may have some bloating as well. Muscle pain, joint pain, heat intolerance course, tachycardia and palpitations. They might even have photophobia and hyperacusis as well. So the diagnostic criteria for POTS include at least three months of symptoms of chronic orthostatic intolerance as well as a sustained increase in heart rate in the first 10 minutes of upright position after supine position.
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A
I know, I know. That's a lot of different symptoms and some you might not even recognize, like hyperacusis, which is being overly sensitive to sound. So, yeah, some weird symptoms. That's the bottom line. And those symptoms can make you nuts. I'm going to take a quick break here and when I'm back, I'll explain how POTS is diagnosed and more importantly, the simple treatments that most doctors don't know about. I always tell parents to read the label before drinking anything packaged. Yeah, that advice is not just for food. Drinks count too, and a lot of them are surprising high in added sugar. That's why cure is one I feel good recommending. Cur's hydration packs are clean and simple plant based electrolytes. No added sugar and only 25 calories. They come in refreshing flavors like watermelon, berry, pomegranate and lemonade that don't taste artificial. What makes cure different is the science. It uses the same electrolyte ratio proven to hydrate as effectively as an IV drip, which means your body can absorb and use what you're drinking. For Kids Cure Kids mixes are made with the help of pediatricians, no artificial ingredients, no added sugars, and kid approved flavors. Whether it's after sports, long school days, or winter play, kids lose electrolytes too. Even when it's cold outside, staying hydrated isn't just about water. You also need electrolytes. That's why I recommend cure. It's clean, tastes great, and my patients love it. You can grab cure on Amazon or find a store near you@curehydration.com DrWendy that's D R W E N D Y Real ingredients, real hydration, ready for the whole family Eczema is unpredictable, but you can flare less with epglis, a once monthly treatment for moderate to severe eczema after an initial four month or longer dosing phase. About four in 10 people taking Eglis achieved itch relief and clear or almost clear skin at 16 weeks, and most of those people maintain skin that's still more clear at one year with monthly dosing. Emplis Lebricizumab LBKZ, a 250 milligram perfect 2 milliliter injection, is a prescription medicine used to treat adults and children 12 years of age and older who weigh at least 88 pounds or 40 kilograms with moderate to severe eczema, also called atopic dermatitis that is not well controlled with prescription therapies used on the skin or topicals or who cannot use topical therapies. EBGLIS can be used with or without topical corticosteroids. Don't use if you are allergic to ebglis. Allergic reactions can occur that can be severe. Eye problems can occur. Tell your doctor if you have new or worsening eye problems. You should not receive a live vaccine when treated with Eglis before starting evglis. Tell your doctor if you have a parasitic infection. Ask your doctor about evglis and visit eglis.lilly.com or call 1-800-LilyRx or 1-800-545-5979. This episode is brought to you by Subaru. Go further in a long range Subaru Hybrid with up to 597 miles per tank in the Crosstrek Hybrid and up to 581 miles per tank in the Forester Hybrid. Subaru Love goes the extra mile. Visit subaru.com hybrid to learn more. Range Based on EPA estimated combined fuel economy in a full tank of fuel, actual mileage and range may vary. At its core, POTS is about heart rate, not blood pressure. The key feature is an abnormally high jump in heart rate. In adolescents, that usually means the heart rate increases by about 40 beats per minute or more within the first 10 minutes of standing or it gets excessively high overall. Importantly, this happens without a drop in your blood pressure. If blood pressure also falls, that's a different condition. POTS is not about low blood pressure, it's about how fast the heart is beating when the body is standing upright. And it's not a quick spike. The Heart rate stays up, the body does not settle the way it's supposed to. Diagnosis is based on a combination of things. The heart rate, response to standing, the symptoms that show up with it, and the pattern over time. This isn't something you diagnose with one dizzy moment. It's consistent and reproducible. Now, here's where it gets tricky. The autonomic nervous system doesn't only control heart rate. It helps regulate blood flow, temperature, digestion, sweating, your pupil response, and even how alert your brain feels. So when that system is dysregulated, the symptoms can be all over the place. So one kid can have dizziness and palpitations. Another one might just have crushing fatigue and brain fog. Some have headaches, nausea, abdominal pain, so on. That's why POTS can look confusing. It's not one symptom. It's a system problem. And that's also why kids with POTS are so often told everything looks normal. Because each individual system, when tested alone, might look okay. It's the coordination between those systems that's off once you start to understand that, the diagnosis makes sense. Do you think that people under 12 may have pots?
- [19:58]
B
No question. I feel comfortable, and I can be criticized for this, I'm sure, but I feel comfortable that I have diagnosed POTS patients down to age six, actually, yeah.
- [20:09]
A
God, it would be amazing to have a marker, because there is something, there is some cascade event that is causing maybe diverse symptoms among different people. But the root cause is dysautonomic function dysfunction.
- [20:21]
B
Sure.
- [20:22]
A
Ah. Where is it coming from? Why do they have dysautonomic dysfunction?
- [20:26]
B
Oh, but. Oh, but just wait. Now, we also recognize that there are multiple, multiple comorbidities that occur with POTS, right? So now we have joint hypermobility. Probably about 3/4 of patients have joint hypermobility who have POTS. I just submitted a manuscript suggesting that as many as 70% of POTS patients have suspected mast cell activation syndrome.
- [20:54]
A
So what happens in mast cell activation syndrome or mcas? Mast cells are cells of your immune system that release chemicals like histamine. So that's what happens when a typical allergy reaction happens, like to pollen, where mast cells react to something they're supposed to react to. And. And in MCAs, they release those chemicals too easily and at the wrong time. So that can cause flushing, hives, stomach pain, nausea, headaches, brain fog, and sometimes dizziness. Have you noticed you get really sleepy if you're having seasonal allergies? That's histamine from your mast cells causing that. In mcas, it's just A lot more intense.
- [21:32]
B
Ten years ago, I had never heard of mcas, and I had a POTS patient for whom I was trying to throw everything at, and nothing was getting better. And then she went and saw this allergist immunologist who was familiar with mcas, diagnosed her, started treating her, came back to see me, and she was doing so much better. I'm like, what is this MCAS thing? I don't get it. As time has gone on, I have learned so much more about it. And like I said, I mean, I think probably about 70% of my patients probably have MCAs. And so what I find is entry level therapy for a lot of them. H1 and H2 blockade. So, you know, twice a day, Zyrtec, twice a day, Pepcid takes care of a lot of these patients for those who have persistent GI symptoms. And what I do is I parse between the POTS and the MCAS patients. So the POTS patients have GI dismotility. They either have gastroparesis or they have intestinal dysmotility. So they'll have constipation, for example, have slow motility, whereas the MCAS patients have nausea, bloating, diarrhea.
- [22:40]
A
The good news is that there are treatments, but in order to treat, we need to understand why the patient has these symptoms. What's the target? It's interesting because we know we have skin and we have diseases of the skin, so we have a specialist called a dermatologist. Same with orthopedics. They specialize in the skeletal system, and we have kids, so there are specialists that take care of them. And in this case, we have diseases or dysfunctions of the autonomic nervous system, and there is a specialist for that. What do we know about what's going wrong in this system?
- [23:13]
B
We understand some of the pathophysiology going behind POTS in part, and this is only in part, pots, patients pool their blood. They pool their blood in their extremities. They pull their blood in their splanchnic circulation, right? So the abdominal vasculature. And so when the blood is pooled there, not enough blood gets to the brain, right? So there's cerebral hypoperfusion. And the hypothalamus says, I'm not getting enough blood. And so it puts out a bunch of norepinephrine to try to crank up the heart rate and blood pressure to improve that cerebral perfusion. And unfortunately, because the systemic venous return, the blood getting back to the heart is so low, because it's all stuck in the places where it's pooling. The hypothalamus tries its best, but it just cranks up the heart rate and tries to crank up the blood pressure as best as possible. In a not particularly winning approach.
- [24:12]
A
Here's a helpful way to think about what's going wrong. When you stand up, gravity pulls blood down towards your legs and your belly. Normally, your nervous system tightens the blood vessels and keeps enough blood moving back up to your heart and brain in pots. That doesn't happen well. Blood pools in the lower part of the body. Instead of getting back up where it's needed, the brain notices that drop in blood flow and sends out an alarm. That alarm center is the hypothalamus. Its job is to keep you alive. And when it senses trouble, it says, we need more blood to the brain now. And its quickest fix is to make the heart go faster. But here's the analogy I use. Imagine you're trying to fill an empty bucket. If you move the bucket around too fast, it never fills all the way. When the heart races, it doesn't have enough time to fill with blood between the beats. So even if it's beating fast, it's not pumping efficiently. That's why one treatment approach is to slow down the heart rate. You use medication, and then the heart has more time to fill up, more blood gets pumped with each beat, and more blood reaches the brain. That is just one of the treatments. There are many, many other treatment approaches. Here's how Dr. Boris approaches this and how he helps people feel better.
- [25:27]
B
My approach is a combination of non pharmacologic and pharmacologic interventions. So, and as I tell my patients, the non pharmacologic therapies are foundational. So you gotta do those. And that includes significantly increased fluid and salt intake to the tune of 80 to 120 ounces of fluid a day and 8,000 to 10,000 milligrams of sodium chloride a day, 8 to 10 grams. And that can be dietary. That can be with supplements, whatever. For patients who have worsening symptoms in the morning, and some, many do, elevating the head of the bed 6 to 8 inches causes the kidneys. Because your head is above your kidneys, your kidneys hold on to salt and water overnight. So that can actually help to reduce the severity of symptoms in the morning. Because of splanchnic pooling, the use of an abdominal binder can actually be really helpful to basically squish the belly, squish those blood vessels and force blood into the core circulation. A fair number of patients have Heat intolerance. So the use of a cooling vest has been really helpful in allowing them to be more functional when it's hot outside. And then, as I tell them, my goal in controlling their symptoms is twofold. One is to allow them to do their activities of daily living, go to school, hang out with their friends, clean their room, take out the trash, but also to exercise, because we know that consistent and progressive exercise really does help a lot of patients to more globally control their symptoms. And there's an exercise protocol that I typically recommend, and so it can be found, actually, Dysautonomia International hosts it online. If you do an Internet search for, for Dallas Chop Pots, you'll find it.
- [27:15]
A
Okay.
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B
It's an eight month protocol, comes with eight months of calendars, tells you what to do every day for the next eight months. It's a combination of leg and core strengthening and cardio. And as I tell everybody, it starts out low and slow. So the low is you don't exercise upright. You exercise recumbent. Initially recumbent bike, rowing machine, or swimming. And the reason for that is upright exercise tends to wreck POTS patients. Classic story. POTS patient has a good day, Exercises like normal, dead for the next three days. So we don't want to do that to them. Right. We want to start them off kind of simple or at least not as stressful. Somewhere around month four, you transition to upright. That's the low. The slow day one is like 10 to 12 minutes. But some patients need to even start slower, like two to three minutes, and then build up from there. And by the end of month two, you're doing an hour a day, five to six days a week. And my patients get to about month four, five, six. And they're like, I really feel like a lot of them are like, I really feel like my symptoms are better controlled to the tune that they can even come off of some of the medications as well.
- [28:17]
A
This sounds almost like a physical therapy to me, but not for the muscles. It's like therapy for the autonomic nervous system. Dr. Boris says that traditional physical therapy does not tend to help unless a patient also has hypermobile joints. And then there are some strengthening things and ways to learn to use the body so that it's not overstretched. That can be helpful from traditional physical therapy. Again, his recommended exercise program can be found@dysautonomia international.org I found it by searching for these keywords. Dallas Chop, that's C, H, O, P, as in Children's hospital of Philadelphia. Pots and protocol so I, I searched for Dallas chop pots protocol, and that link is in the show notes. Dr. Boris. Next step is to ask about and address the three worst symptoms the patient.
- [29:07]
B
Is having based on what they tell me are their three worst symptoms. Then I will make a determination. Okay, so let's say it's orthostatic intolerance, nausea and fatigue, and brain fog, because I treat those two together.
- [29:28]
A
There are a variety of medications that can be used to target specific symptoms, and care is individualized. One of the things that I find most interesting is that the virus that causes COVID 19 seems to cause POTS. That is probably what some of Long Covid is. And so it naturally led me to ask Dr. Boris about this as well. Do you think that Covid is going to have an impact on us, maybe finding an etiology?
- [29:54]
B
That's a great question. I don't know that. I mean, the SARS CoV2 virus is such a bizarre virus. It's doing all kinds of things that all together that we've never seen in one place, between the micro thrombi, between the viral persistence, between the immunologic things that it's doing. I mean, at minimum, if we're paying attention or if the smart people. Not me, if the smart people are paying attention, it'll give him some clues. Probably as much as 30% or so of long Covid is pots.
- [30:35]
A
Oh, my gosh.
- [30:37]
B
Yeah.
- [30:40]
A
After Covid, a lot of people didn't bounce back. Instead, they were left with dizziness, racing heart when someone standing, fatigue, brain fog, exercise intolerance. Does it sound familiar? These symptoms do sound a lot like pots. What's interesting is that the treatments do overlap. When Long Covid shows up with an autonomic pattern, we treat it exactly the same way we treat pots. So even though we don't have all the answers yet, we're not starting from scratch when it comes to treatment. For a long time, kids with symptoms like this were told that maybe they were anxious or deconditioned. And now we're realizing that a lot of these kids weren't imagining anything. We just didn't understand what was happening. What's changed, especially since the pandemic, is that now we're starting to understand how the autonomic nervous system can be disrupted and how that disruption shows up across many different conditions that we have historically dismissed. So here's my if this episode made you think of someone, a child, a teen, a college student, share it, talk about it, ask better questions, and if you're a clinician, listening, stay curious. These are the patients that medicine missed for a long time. We're not done learning, and we are moving in the right direction. For more from the pediatrician next door, find me on the web@ pediatriciannextdoorpodcast.com if you've got a question about the weird things kids do, send an email to helloediatriciannextdoorpodcast.com for a chance to hear your voice on the show. I'm Dr. Wendy Hunter and I'm the pediatrician nextdoor. This show is produced by Red Rock Music. Make sure to subscribe and leave a review wherever it is you're listening. I'll be back next time with more. My dad taught me a lot, including how easy it is to forget to cancel things. So I downloaded Experian, my bff. Big financial friend Experian could help me cancel my unused subscriptions and lower my bills, saving me hundreds a year. Get started with the Experian app today. Your big financial friends here to help you save smarter. Results will vary. Not all bills or subscriptions eligible. Savings not guaranteed $631 a year average savings with one plus negotiations and OnePlus cancellations paid membership with connected payment account required. See experian.com for details. Experian.