Ep. 25: POTS - The Hidden Health Condition Medicine Missed

Key Takeaways

1. POTS is real, physiological, and common
Up to one million Australians may be living with it right now. It is a disorder of the autonomic nervous system — not anxiety, not stress, not "in your head."

2. Diagnosis takes far too long
On average, patients see 5.2 doctors over up to seven years before receiving a diagnosis. Almost two-thirds are initially told their symptoms are anxiety-related. Basic heart rate testing should happen first.

3. It overwhelmingly affects women — and there's a biological reason
Hormonal transitions — puberty, pregnancy, perimenopause — directly affect autonomic nervous system regulation. This is not random. It is specific and physiological.

4. There are five recognised subtypes
Neuropathic, hypovolemic, hyperadrenergic, hypermobility-related, and immune-related. Treatment works best when the subtype is identified.

5. Treatment exists — and lifestyle comes first
Fluid and salt intake, compression garments, graded exercise, and physical countermeasures are all evidence-based first-line strategies. Medications including propranolol, midodrine, ivabradine, and pyridostigmine (pir-id-oh-STIG-meen) are used when needed.

7. Your nervous system is not broken — it's dysregulated
Practical tools like slow breathing, vagus nerve stimulation, cold water, and nervous system safety work are legitimate, research-supported complements to physical treatment.

8. The system is starting to move — but not fast enough
No approved medication, no national guideline, no formal treatment pathway in Australia yet. Advocacy, awareness, and community voices are what drive change.

If you think you might have POTS:
Ask your GP for a simple heart rate test lying down versus standing. A rise of 30 or more beats per minute within ten minutes of standing, alongside symptoms of orthostatic intolerance, meets diagnostic criteria. You do not need a specialist referral to begin this conversation.

Resources to learn more:

• Australian POTS Foundation: australianpots.org.au
• Dysautonomia International: dysautonomiainternational.org
• For more information on my nervous system regulation, skills, education and support group can be found on my website www.rewiredpsychology.com.au or emailing admin@rewiredpsychology.com.au

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Transcript

0:05

Welcome to Shine the Spotlight, the podcast about how we actually function as humans in our health, our work, and the lives we're trying to build. My name's Nikki Moran, clinical psychologist, writer, and entrepreneur. I explore the psychology behind health, business, and sustainable success. Each episode brings practical, real-world conversations at the intersection of applied psychology and human behavior, invisible health, energy, and nervous system regulation, business psychology, leadership, and doing work smarter, not harder. I focus on building freedom, meaning, and a life that supports you, not just your output. So this is not therapy, and it's not hustle culture. It's an understanding about how your mind and nervous system shape your health, your choices, and your ability to create a life and business that actually works for you. Whether you're a founder, a professional, a creative, or a high-functioning human who knows there is a better way to live and work, Shine the Spotlight offers insight, language, and perspective to help you move forward without burning yourself out or abandoning what matters. Success shouldn't cost your health, and a good life shouldn't be postponed. Welcome back to Shine the Spotlight. It has been a little bit due to surgery recovery, but today I'm back with a really important episode around POTS. So this is the hidden condition that medicine has missed. For those that don't know me, I'm a clinical psych, entrepreneur, and have lived experience with invisible mind body health conditions myself, as well as a mum to daughters with these conditions too. Before we get into today's episode, I want to share something that happened this week that honestly blew me away Two days ago, I did a reel on Instagram and on TikTok about a condition called POTS, postural orthostatic tachycardia syndrome. I shared some key facts, told what it was, and asked if anyone had been on a long journey to diagnosis. Within forty-eight hours, I'd had over thirty-one thousand views across the platforms, plus so many messages and comments, which shows why this is so important and so needed. There's so many stories of years being dismissed, years of being told it was anxiety or stress, or that they were imagining it. People being told, "You're young and fit, there's nothing wrong with you." Well, now people are saying, "Finally, someone is talking about this, and to keep talking about it." Some of the questions that people asked were around what causes POTS or what can be done about it, and how can we make the system listen. So today's episode is for every single one of you who commented or messaged, and for those that need to learn more and to also know that you're not alone. So this is the deep dive based on evidence, research, and the real stories. So let's go. We'll start at the beginning with what exactly is POTS. So as I mentioned, it stands for postural orthostatic tachycardia syndrome. It's a disorder of the autonomic nervous system, the part of your body that automatically regulates things like heart rate, blood pressure, blood flow, temperature, and digestion. All the things that happen without you thinking about them. In a healthy person, when you go from lying down to standing up, your body automatically redirects the blood flow, so your brain continues to be perfused. However, when you live with POTS, there's a delay between the brain knowing that you're changing position, for example, from when you sit to your stand. There's a delay with the blood coming up to the brain. So the mechanism fails. Blood pools in the lower body, and then the heart races to compensate, spiking thirty or more beats per minute within ten minutes of standing without a drop in blood pressure. The result is a cascade of debilitating symptoms, however. So often there's dizziness or feeling like fainting or actual fainting, racing heart, palpitations, increased heart rate. There's often overwhelming fatigue and brain fog, nausea, exercise intolerance, and heat intolerance. So showers can be hard, and also after eating can be difficult, and plus much more. Here's what makes POTS so hard to recognize. The symptoms are often invisible. There's no broken limb or a visible marker that's easily just pick-up-able. People look fine from the outside while their body's working desperately hard just to keep them upright. According to data from the Australian POTS Patient Registry, patients see on average 5.2 doctors before receiving a diagnosis. That's a lot of time, money, and a lot of emotional factors that go into all of those appointments. That diagnosis can take up to seven years, and almost two-thirds of patients were initially told their symptoms are anxiety related before even basic heart rate testing was performed. Seven years, five doctors, and it's just anxiety. That is not a coincidence. That's a pattern, and we'll come back to why Now, one of the questions was what actually causes POTS. So this is where the science gets genuinely fascinating because POTS is not one single condition. Researchers have identified it as a multifactorial disorder with several overlapping subtypes, and each has slightly different underlying mechanisms. One is neuropathic POTS, and this is a common one, accounting for roughly a third to half of all cases. Damage to small nerve fibers that regulate blood vessel constriction in the lower body means blood pools in the legs when you stand. Then there's hypovolemic POTS, so patients have low blood volume. The heart races because there isn't enough circulating blood to maintain adequate pressure and flow when upright. Then hyperadrenergic POTS, so the body overproduces noradrenaline, which is the fight or flight stress hormone upon standing. A previous study found that these patients had significantly elevated levels compared to other POTS subtypes. And then hypermobility-related POTS. This is associated with Ehlers-Danlos syndrome or hypermobility spectrum disorder. Ehlers-Danlos or hypermobility is a group of connective tissue disorders. Connective tissue is essentially the scaffolding of our body. It holds joints, blood vessels, skin, organs, everything together. People that have Ehlers-Danlos or EDS hypermobility, have connective tissue that is that is more elastic and stretchy than it should be. And why does this matter for POTS? Well, your blood vessels are also made of connective tissue. So when that tissue is more stretchy, your veins don't hold their shape as firmly when you stand up. Blood pools more easily in the legs and the lower body, and less returns to the heart. So the heart then races to compensate, and that's POTS. This is where so many people with hypermobility or EDS have symptoms they've never been able to explain. It's joint flexibility or double jointedness, the fatigue, the dizziness on standing or in heat, and have spent years being told that they're just bendy or anxious, and often they're not. Often there's a real physiological connection between their connective tissue and their autonomic nervous system, but it doesn't stop there. Hypermobility related POTS frequently clusters with ADHD or autism, mast cell activation syndrome, and chronic pain. A pattern researchers are only just beginning to map. A 2024 study found preliminary genetic links between POTS and connective tissue disorders, suggesting this overlap is written into biology, not just coincidence. Then there's immune related POTS, increasingly recognized, particularly in post-viral cases. Autoimmune antibodies may interfere with autonomic nervous system function. One of the most important and underappreciated factors is hormones. Between 80 to 87% of POTS patients are women, and the condition tends to emerge or worsen at key hormonal transitions such as puberty, pregnancy, perimenopause. Researchers believe estrogen and related hormones directly affect blood vessel tone and autonomic nervous system regulation, something that's very under-researched. Now, also to mention the long COVID connection. Post-COVID POTS has been one of the most significant drivers of new diagnoses globally. Recent research shows that up to 30% of long COVID patients meets the diagnostic criteria for POTS. Cases have surged an estimated fourteen-fold internationally since the COVID pandemic. The mechanism appears to involve immune dysfunction and nervous system dysregulation. Now, there's also emerging research on the very controversial topic around chemical or vaccine connection. It's came up in several comments, and there's emerging research that researchers are beginning to look at a possible link between this. It's a sensitive area, so let me be clear about what the evidence actually says. They've found so far a small number of case reports and early observational studies which have described new onset POTS following a vaccination, particularly the mRNA ones. Researchers have proposed that in rare people that are more susceptible for immune response triggered by vaccination may activate similar mechanisms to those seen in post-COVID POTS. This includes autoimmune disruption of autonomic nerve function and in some cases where the immune system mistakenly targets the body's own tissue. It's important to put this in proportion, however. The rates of POTS following COVID infection appears significantly higher in the research than following vaccination. And for most people, the vaccine remains to be protective. But for a small subset, particularly those with pre-existing hypermobility, vulnerability, connective tissue disorders, or immune sensitivity, post-vaccination dysautonomia appears to be a real and recognized phenomenon that is now being taken seriously in the research literature. So the key message is this: If your symptoms begin after this, that history is clinically relevant and worth discussing with your doctor. You do deserve to be heard and not dismissed. There's also some new findings around the pelvic vein connection. A landmark study, which was published recently, identified pelvic vein compression, where veins in the pelvis are structurally compressed and in a majority of POTS patients. This restricts blood returning to the heart, and critically, many of those patients experience major improvement after treatment with vein stents. So it's still emerging science, but it's reshaping how we think about the condition. A twenty twenty-four genome-wide association study found preliminary evidence for genetic variants linked to autonomic signaling and connective tissue disorders, including hypermobile EDS. POTS often runs in families, and for many patients, there's a biological predisposition that was then triggered by a virus, a hormone shift, or another event. So now we've gone over what are some of the mechanisms and the underlying factors that can lead to POTS, but let's make it real, because behind every statistic is a person. And over the years, from my own lived experience with people that I love and having a connective tissue disorder myself, plus some of the stories that I've heard, many have had to give up work or school or study. Some are bedridden. Many have taken years to get a diagnosis. And yes, there could also be anxiety and stress, but it does not explain the symptoms and impact of functioning. This is a systemic failure, and it's not unique to POTS. It's also for EDS, mast cell activation, and all those similar conditions. It's also a pattern we've seen with endometriosis, ADHD, fibromyalgia, and long COVID. Conditions that have predominantly impacted women and dismissed until the evidence becomes impossible to ignore So now to the question that I was asked a lot, what can actually be done? This is not medical advice, and please discuss your own individual circumstances with your health professional. This is a general summary of what is noted to be beneficial. POTS does not yet have a cure, and Australia currently has no approved medication specifically for POTS and no national treatment guideline. But that does not mean patients are without options. There's growing and increasingly robust evidence base for management, and for many, the right combination of strategies can lead to real significant improvement multiple systematic reviews all agree that lifestyle modifications are the foundation of POTS management and should come before or alongside medication management. One of the most consistently supported interventions is around fluid and salt intake. So many with POTS have low blood volume. Expanding that volume is fundamental. Evidence supports drinking approximately two to three liters of fluid a day. Increasing dietary salt, so typically three to five grams of sodium per day, and sometimes more under medical supervision. This helps your body retain that fluid. This approach is not recommended for the hyperadrenergic subtype. So knowing which is your subtype does matter and talking to your trusted health professional. Compression garments is another one. So ideally extending from the feet to the abdomen. This reduces blood pooling in the lower body and pushes more blood back toward the heart. Studies show significant reductions in heart rate and symptom severity with proper compression. Full lower body compression garments, including abdominal binders, are more effective than knee-high stockings alone. Movement and reconditioning. With these conditions, they can quite quickly lead to deconditioning and worse symptoms and worse functioning. The research is consistent with this, so structured movement is one of the most effective long-term treatments for POTS. And the key is starting slow, starting gentle, starting with what's comfortable for you, and often that's either seated movements or horizontal movements. So example, rowing, swimming, exercise bike. To avoid triggering symptoms while still training the cardiovascular system. Studies show that people who complete a structured reconditioning program do have improvements in heart rate, blood volume, and quality of life. Another is physical countermeasures, so simple techniques for managing acute symptoms. For example, crossing the legs and squeezing the thigh and glute muscles, pumping the calf muscles, or squeezing a rubber ball. So these mechanically return blood from the legs to the heart and quickly reduce heart rate when symptoms spike Dietary adjustments. So eating smaller, more frequent meals reduces the blood flow diversion to the gut after eating, which can worsen POTS symptoms. A lot of people will say that eating makes them feel sick, so then it becomes this whole cycle where eating's really difficult. Limiting alcohol and caffeine is also important, and avoiding prolonged standing or prolonged heat exposure. They're also standard recommendations. A recent study evaluate 21 randomized controlled trials on POTS medications. The most studied medications include propranolol, which is a beta blocker, to reduce heart rate, and low doses of it have been shown to be beneficial. Midodrine, it's been shown to tighten blood vessels and reduce pooling. Pyridostigmine helps reduce autonomic nerve signaling. And ivabradine has been found to reduce heart rate without the blood pressure effects of beta blockers. There's been several others, too. For a lot, it's trial and error to find the ones that are going to help you. For immune-related or post-COVID POTS, intravenous therapy has also been studied and has shown some benefits for some people. Another one is to understand your nervous system and working with nervous system regulation. One of the most empowering things POTS patients can do is understand their autonomic nervous system. And it's to understand, too, that it's not broken, it's dysregulated. And that distinction matters because regulation is something that you can actively support. The autonomic nervous system has two branches. The sympathetic nervous system, which is your fight or flight, which accelerates the heart, redirects blood to the muscles, and prepares the body for action. Whereas the parasympathetic nervous system, your rest and digest state, does the opposite. It slows the heart, promotes digestion, rest and recovery, and signals safety to the body. In POTS, the sympathetic system is often stuck in overdrive. The body's essentially in a low-level state of alarm, even at rest, which is why symptoms like racing heart, anxiety-like sensations, and exhaustion are so constant and so draining. The good news, though, is that the parasympathetic system can be intentionally activated, and research supports several practical ways to do this One is with slow diaphragmatic breathing. Breathing in for four and then out for six to eight. This directly stimulates the vagus nerve, which is the main highway of the parasympathetic system, and it's been shown to reduce heart rate and calm the sympathetic overdrive. Another's cold water on the face or neck. This activates the diving reflex, which rapidly stimulates the vagus nerve and can quickly lower heart rate during a symptom spike. Humming, singing or gargling, these vibrate the vagus nerve and have genuine physiological effects on nervous system tone. And yes, the research supports it. Safety and predictability are important because the nervous system regulates better when it feels safe. Consistent sleep schedules, reducing unpredictability, and gentle social connection all support parasympathetic tone over time. So this isn't about thinking yourself well, it's about understanding that the nervous system is responsive, and small, consistent inputs can shift it toward a calmer baseline. So for many people, nervous system regulation work becomes an important comp- com- becomes an important complement to other physical treatments And another thing is also doing research into health professionals that you choose. So finding the doctors or the specialists or whoever you see who do seem to have an understanding or a working knowledge of these conditions is really important as well. So let's zoom out a little. Australia potentially has close to one million people living with POTS right now. There's no approved medication, no national diagnostic guideline, no formal treatment pathways. If we compare that to type 2 diabetes, which have national guidelines, subsidized, subsidized medications, a whole primary care ecosystem built around it, POTS has none of that, despite a comparable burden of disease. But the good news is, things seem to be starting to change slowly There's now some dedicated clinics starting to be established in New South Wales. The federal government has confirmed POTS patients can access Medicare rebates for consultations, team care arrangements, and multidisciplinary conferencing. A Healthy Hormones medical conference in Sydney recently featured emerging international research, which has begun to reshape clinical understanding. Some neuroimaging research in 2024 has confirmed that brain fog in POTS is physiological, and there's measurable differences in brain blood flow and connectivity in POTS patients when upright. So the brain fog is real, and it has been noticed. And then also, there's several groups on Facebook or on social media, different foundations that are aiming for research and raising awareness. And I also have a support and skill practice group for people managing complex conditions for nervous system regulation, support, education, and connection, and more information can be found in the show notes or by reaching out. The more we talk about this, the more the system has to respond. So if we start to wrap up and bring this home, if you think you might have POTS, ask your GP about a simple heart rate test lying down versus standing. A rise of 30 or more beats per minute within 10 minutes of standing with symptoms of orthostatic intolerance is one of the diagnostic criterias. You don't need a specialist to start the conversation. If you've been dismissed, you're not imagining it. You are not imagining it. You are not anxious. Hormonal fluctuations, post-viral changes, connective tissue differences, these are all real, measurable physiological mechanisms. Keep advocating for yourself. If you're a health professional, try to learn more about this because the very chances are you're working with people with these conditions, and they may not yet know it. The diagnostic criteria are simple, and the tests are basic. Almost two-thirds of POTS patients are told their symptoms are anxiety before even a heart rate test is performed, and this needs to change. For all of us, conditions that predominantly impact women have historically been underfunded, underdiagnosed, and dismissed, but it does also impact males too. POTS is the latest in a long line, and the difference now is that the community is speaking loudly, and the science is starting to catch up finally. So thank you to everyone who's commented, messaged, and shared their story. This episode exists because of you. I will link any resources in the show notes, and until next time, keep shining the spotlight on what matters Thanks for spending time with me on Shine the Spotlight. If today's conversation resonated, please take a moment to notice what has stirred, an insight, a shift, or a question worth sitting with. This shows a bit understanding how we work as humans in our health, our business, and our lives so we can make smarter choices that supports both success and wellbeing to give us back more life and freedom. If you found this episode valuable, follow or subscribe wherever you're listening, and feel free to share it with someone who might need it. Until next time, keep investing in what truly matters and keep shining the spotlight.