If you've been told your racing heart, dizziness, and brain fog are "just anxiety," you're not alone. Research shows that 77% of people with POTS are told their symptoms are psychological before finally receiving the correct diagnosis. Here's why this happens and how to advocate for yourself.
You know something is wrong with your body. Your heart pounds when you stand up. You feel dizzy in the shower. You can't think straight, and by afternoon, you're exhausted in a way that sleep doesn't fix. But every doctor you see runs tests that come back "normal" and suggests you might want to talk to someone about your anxiety.
The frustration is real. And for the estimated 1 to 3 million Americans living with Postural Orthostatic Tachycardia Syndrome, this scenario plays out far too often. POTS is a disorder of the autonomic nervous system that causes your heart rate to spike dramatically when you change positions, but because its symptoms overlap so heavily with anxiety, patients spend years being told their very real, very physical condition is all in their heads.
What Is POTS, Exactly?
POTS stands for Postural Orthostatic Tachycardia Syndrome. It's a condition where your autonomic nervous system doesn't properly regulate blood flow when you change positions. When you stand up, blood pools in your lower body instead of circulating back up to your heart and brain efficiently. Your heart tries to compensate by beating faster, often increasing by 30 beats per minute or more within ten minutes of standing.
The result? A cascade of symptoms that can make daily life feel impossible: racing heart, lightheadedness, brain fog, fatigue, trembling, nausea, and that unsettling feeling that something is very wrong.
POTS predominantly affects women. Studies show that 75 to 94 percent of patients are female, and symptoms typically begin between ages 15 and 50. Many patients can trace their onset to a triggering event: a viral illness, surgery, pregnancy, or trauma. Since the COVID-19 pandemic, researchers have documented a roughly 14-fold increase in POTS cases, with studies showing that 30% of severely affected Long COVID patients meet the diagnostic criteria.
Why POTS Gets Confused with Anxiety
On the surface, POTS and anxiety look almost identical. Both can cause a racing heart, dizziness, shortness of breath, trembling, sweating, chest discomfort, and difficulty concentrating. When a patient walks into a doctor's office describing these symptoms, anxiety is often the first explanation that comes to mind.
But there's a crucial difference in what's happening inside the body.
In anxiety, the brain perceives a threat (real or imagined) and triggers the sympathetic nervous system to release adrenaline. The physical symptoms follow the psychological experience.
In POTS, the body releases adrenaline in response to a physical problem: blood isn't circulating properly when you stand. Your nervous system floods your body with stress hormones trying to compensate for faulty blood flow regulation. The physical symptoms come first, and any anxiety you feel is a reaction to those symptoms, not the cause of them.
Research from Vanderbilt University confirms this distinction. POTS patients have been shown to have significantly elevated norepinephrine levels when standing, sometimes two to four times higher than normal. Their bodies are in a genuine physiological state of fight-or-flight, but it's triggered by gravity and blood flow, not fear or worry.
As one researcher put it, "Much of the anxiety attributed to patients with POTS appears to be due to a misinterpretation of the physical symptoms of a hyperadrenergic state."
The Key Differences Between POTS and Anxiety
While the symptoms overlap significantly, there are several distinguishing features that separate POTS from anxiety disorders:
Position Matters
POTS symptoms are tied to changes in posture. They appear or worsen when you sit up or stand and improve when you lie down. Anxiety symptoms aren't consistently connected to body position. If your heart races specifically when you stand up from bed in the morning or after sitting for a while, and calms down within minutes of lying flat, that pattern points toward POTS rather than anxiety.
Visible Physical Signs
Many POTS patients experience blood pooling that you can actually see. Their feet and legs may turn purple, red, or mottled when they've been standing. Some develop what's called a "coat-hanger headache," pain that spreads across the back of the head, neck, and shoulders during episodes. These visible, measurable signs don't occur with anxiety disorders.
Heat Intolerance
Hot showers, warm weather, and heated rooms dramatically worsen POTS symptoms. Many patients report that taking a shower is one of their most challenging daily activities. This specific heat sensitivity isn't a hallmark of anxiety.
Response to Treatment
Here's something important: standard anxiety treatments often don't help POTS, and some can actually make it worse. A clinical trial at Vanderbilt found that sertraline (Zoloft) had a modest effect on blood pressure in POTS patients but did not reduce heart rate or improve symptoms. SNRIs like Effexor can increase sympathetic drive and worsen symptoms in many POTS patients.
What does help POTS? Increased salt and fluid intake, compression garments, medications that address blood volume and vascular tone, and carefully designed exercise programs. These interventions target the underlying autonomic dysfunction rather than psychological distress.
The bottom line: POTS produces physical symptoms identical to anxiety, but the cause is autonomic nervous system dysfunction, not psychological distress. Research confirms that POTS patients do not have higher rates of anxiety disorders than the general population. The anxiety many patients experience is a natural response to frightening physical symptoms and years of being dismissed by healthcare providers.
The Misdiagnosis Problem: By the Numbers
The statistics on POTS misdiagnosis are staggering. A 2019 study surveying nearly 5,000 POTS patients found that patients wait an average of 4 to 6 years before receiving the correct diagnosis. They see an average of 7 different doctors along the way, with 21% consulting more than 10 physicians before someone finally connects the dots.
Perhaps most troubling: 77% of patients report being told their symptoms were psychiatric or psychological before their POTS diagnosis. Nearly 60% were explicitly told their symptoms were "all in their head."
The problem is compounded by gender bias. Despite POTS being a predominantly female condition, women wait nearly two years longer for diagnosis than men. The 2019 study explicitly noted that "gender bias may be influencing the diagnostic process."
Why does this happen? Several factors contribute:
Lack of medical education: POTS isn't covered meaningfully in most medical school curricula. A 2024 survey found that 75% of POTS patients encountered doctors who had never heard of the condition, even after the patient had already been diagnosed.
Testing limitations: Standard vital signs taken while a patient is lying down or sitting will appear completely normal in POTS. The abnormality only shows up when the patient stands, and most routine exams don't include positional vital sign measurements.
Symptom questionnaires: Standard anxiety screening tools ask about rapid heartbeat, sweating, dizziness, and difficulty concentrating. POTS patients score high on these assessments because of their physical symptoms, leading to misinterpretation as psychiatric illness.
How POTS Is Actually Diagnosed
The gold standard for diagnosing POTS is a tilt table test. During this test, you're strapped to a motorized table that moves from horizontal to nearly upright while medical professionals monitor your heart rate and blood pressure continuously. The diagnostic criteria require a heart rate increase of 30 beats per minute or more (40 for adolescents) within ten minutes of being upright, without a significant drop in blood pressure.
But you don't necessarily need specialized equipment to get initial answers. An active standing test can be performed in any doctor's office. The protocol is straightforward: rest lying down for ten minutes, take baseline measurements, then stand and measure heart rate and blood pressure every two minutes for ten minutes. If your heart rate jumps 30+ bpm and stays elevated, that's a strong indicator of POTS.
Additional testing may include measuring catecholamine (stress hormone) levels while standing, autonomic function tests like QSART to assess nerve function, and blood volume testing. These help identify which subtype of POTS you have and guide treatment decisions.
How to Advocate for Yourself
If you suspect you have POTS rather than anxiety, here are steps you can take:
Track your symptoms with position in mind. Keep a log noting what you were doing when symptoms started (standing, sitting, lying down), how long they lasted, and what made them better or worse. Note if symptoms improve when you lie down or elevate your legs.
Measure your own heart rate. Use a pulse oximeter or smartwatch to check your heart rate while lying down for several minutes, then immediately after standing. Repeat at 2, 5, and 10 minutes. If you consistently see a jump of 30+ bpm that stays elevated, bring this data to your doctor.
Ask specifically for orthostatic vital signs. Request that your doctor check your heart rate and blood pressure while lying down, then while standing. Many physicians don't do this routinely, but it's a simple test that can reveal the pattern.
Seek specialists who know POTS. Cardiologists, neurologists, and electrophysiologists who specialize in autonomic disorders are most likely to recognize and properly diagnose POTS. Dysautonomia International and Standing Up to POTS maintain directories of knowledgeable providers.
Don't dismiss yourself. If anxiety treatments aren't working and your symptoms are tied to position changes, trust your experience. The research is clear that POTS is a real, physical condition that requires different treatment than anxiety.
Effective Treatment Requires a Multidisciplinary Approach
POTS affects multiple body systems simultaneously, which is why effective treatment typically requires input from several specialties. The autonomic nervous system controls not just heart rate but also digestion, temperature regulation, bladder function, and blood vessel tone. When it malfunctions, the effects ripple throughout the body.
Successful POTS management usually involves a combination of lifestyle modifications (dramatically increased salt and fluid intake, compression garments, sleeping with the head elevated), carefully progressed exercise programs that start with recumbent activities, and sometimes medications that address blood volume, heart rate, or blood vessel constriction.
Research from UT Southwestern's Levine lab found that patients who completed a structured 3-month exercise program saw significant improvements: increased blood volume, improved cardiac function, and most importantly, 71% achieved remission, with over half no longer meeting the diagnostic criteria for POTS.
At specialized clinics like Cognitive FX, we approach conditions affecting the autonomic nervous system with a comprehensive, multidisciplinary perspective. Our team uses advanced functional neuroimaging to understand how the brain and nervous system are functioning, then creates individualized treatment plans that address the interconnected nature of these conditions. For patients who have spent years being dismissed or partially treated, this integrated approach can make a meaningful difference.
You Deserve to Be Heard
If you've spent months or years being told your very real symptoms are psychological, know this: you're not imagining things. The research is unequivocal that POTS is a genuine physiological condition with measurable abnormalities. The symptoms you're experiencing have a physical basis, even if it takes time to find a provider who recognizes it.
"A young woman poetically said to me, 'I awoke in a body that was no longer my own.'"
— Dr. Blair Grubb, Distinguished Professor of Medicine and Dysautonomia International's 2015 Physician of the Year
The good news is that awareness is growing. Post-COVID research has brought unprecedented attention to dysautonomia, and more physicians are learning to recognize POTS. With proper diagnosis and treatment, most patients see meaningful improvement in their symptoms and quality of life.
You know your body better than anyone. Don't stop advocating for yourself until you get answers that make sense.
Sources
- Shaw BH, et al. (2019). The face of postural tachycardia syndrome. Journal of Internal Medicine, 286(4):438-448. doi.org/10.1111/joim.12895
- Kesserwani H. (2020). Postural Orthostatic Tachycardia Syndrome Misdiagnosed as Anxiety: A Case Report. Cureus, 12(10):e10881. PMC7652348
- Boris JR, et al. (2024). Long-Term POTS Outcomes Survey. Journal of the American Heart Association, 13(14):e033485. doi.org/10.1161/JAHA.123.033485
- Johns Hopkins Medicine. Postural Orthostatic Tachycardia Syndrome (POTS). hopkinsmedicine.org
- Cleveland Clinic. POTS: Causes, Symptoms, Diagnosis & Treatment. clevelandclinic.org
- Dysautonomia International. 10 Facts Doctors Should Know About POTS. dysautonomiainternational.org
- Lei LY, et al. (2019). Diagnosis and Management of POTS. Cleveland Clinic Journal of Medicine, 86(5):333-344. ccjm.org
- Raj V, et al. (2009). Psychiatric profile and attention deficits in postural tachycardia syndrome. J Neurol Neurosurg Psychiatry, 80:339-344.