In this article, there will be facts and opinions. Please take as such and ensure you speak with a well-trained healthcare or mental health provider to ensure you get the best care for dysautonomia and/or anxiety disorders to ensure you are correctly diagnosed and treated. This is not medical advice, but one person’s lived experience shared for the benefit of the community. 

How I Went from Panic to POTS
I remember sitting in yet another pristine, sterile and cold doctor’s office, the walls closing in around me as the doctor delivered a diagnosis I had heard many times before: “It’s just anxiety.” My heart raced and my hands shook and loved ones started asking if I had Parkinson’s. Yet, my symptoms weren’t racing from nervousness or anxiety—it was a symptom of something much more complex. After years of being bounced around to different doctors, I finally found the real culprit with the help of an expert cardiologist: Postural Orthostatic Tachycardia Syndrome (POTS) a type of dysautonomia, which are often overlooked components of my underlying Ehlers-Danlos Syndrome (EDS), not yet uncovered in my medical history at that time.

For me, it took persistent self-advocacy and education to unearth the truth—that what plagued me was not a product of anxiety but a legitimate physiological disorder affecting my autonomic nervous system. Basically- being stuck in flight or flight mode. But it took so many second opinions to figure it out with the help of EDS expert providers experienced in recognizing the often overlooked symptoms. Today, we know much more about this disorder after the global COVID pandemic and the aftereffects still rippling as it impacts thousands today in variations of dysautonomia and Long Covid. But back then, I knew deep down that something else was wrong—it wasn’t ‘just anxiety.’

POTS is a form of dysautonomia, a disorder of the autonomic nervous system, which controls the automatic functions of the body such as heart rate, blood pressure, salivation and digestion. Think of all the body systems that you don’t have to think about consciously to keep going as they regulate themselves. When there is dysfunction, it’s characterized by an excessive heart rate increase upon standing or movement where the gravitational pull and the ineffective body response doesn’t allow proper circulation when upright due to blood pooling in the feet and legs. The resulting symptoms can mimic anxiety—racing heart, shaking, and dizziness—which makes misdiagnosis far too common. However, the root causes and treatments for POTS and anxiety are quite distinct, which makes distinguishing between them critical for proper management for those with EDS, a common comorbidity.

There are confusing and controversial issues at play in the misdiagnosis maze that too often delay proper diagnosis and treatment including:

• Dysautonomia, a cardiological disorder, can also affect a person’s mental health according to Medical News which complicates the diagnosis and symptom attributions process. 
• Medical researchers agree there is a mistaken identity crisis between POTS and anxiety 
• Gender bias plays a role in diagnosis as well because women are more commonly labeled with mental health issues according to studies, and subject to dismissal by healthcare providers according to the author of the book Medical Gaslighting
• There is symptom overlap between anxiety disorders and POTS highlighting the need for a differential diagnosis techniques
• There is a gap in medical education training not permitting the autonomic dysfunction behind the symptoms often seen in POTS patients

For many of us living with EDS, the road to a correct diagnosis is fraught with confusion and gaslighting leading to diagnostic detours. Like many, my symptoms were often dismissed as psychological, the physical manifestations mistaken for panic attacks. The fainting spells were repeatedly attributed to a mental health disorder. This frequent misdiagnosis is weakly supported by very few medical researchers such as Andrea Bulbena-Cabre who believes EDS is psychiatric. But most in today’s mainstream medicine are coming to understand the differences, even while they are commonly co-existing in patients with both dysautonomia and anxiety. 

Imagine (if you’re not already) living in a world where your body’s natural responses on autopilot like breathing and heartbeat are mistaken for anxiety, leading to a diagnostic detour that can last years. For many with POTS, the journey to an accurate diagnosis is like peeling back layers of misinterpretation, revealing the complex interplay between the heart and nervous system. It’s time to shift the narrative from ‘it’s all in your head’ to ‘it’s all about understanding the head-heart connection.” 

Don’t just take my opinion from my lived experience, here are few facts from medically-validated sources on the diagnostic odyssey many POTS patients endure:

FACTS:

• POTS is frequently misdiagnosed as anxiety because the symptoms, such as palpitations and dizziness, can mimic those of anxiety disorders. However, POTS is not caused by anxiety, and patients often face significant delays in receiving an accurate diagnosis​ (American College of Cardiology). 
• POTS patients initially misdiagnosed due to overlapping anxiety symptoms according to Dysautonomia International, also noted that while we exhibit symptoms that appear anxiety-related, the underlying causes of POTS are often related to autonomic nervous system dysfunction. 
• Misdiagnosis can lead to inappropriate treatment, prolonged suffering, and significant impacts on the quality of life. Many POTS patients report being told their symptoms are “all in their head” before receiving a correct diagnosis​ (Standing Up To POTS).
• The American College of Cardiology outlines the importance of differentiating POTS from conditions like neurogenic orthostatic hypotension and inappropriate sinus tachycardia to ensure accurate diagnosis and treatment​.

The subject, and challenging it, are often taboo to discuss, especially in open community forums due to the stigma associated with mental illness diagnostic labels. Doctor dismissal can make patients hesitant to speak out or challenge their diagnosis or hide in shame. Discussing these diagnostic difficulties can be uncomfortable as it highlights gaps in medical understanding in the healthcare system​ where patients are desperate for help and fear being turned away from doctors. Patients with POTS who are misdiagnosed with anxiety may feel invalidated, leading to frustration and anger. Sometimes, discussing these issues openly can then be seen as confrontational, especially in settings where traditional medical authority is valued,​ according to the Cleveland Clinic. 

Warning: Before you take that offered prescription for anxiety-reducing Xanax or other anxiety medications, usually benzodiazepines, make sure you are treating the correct condition. Anxiety meds will calm you down, but they will not help with POTS because they are separate disorders. Ensure you get the proper diagnosis before you start taking any prescription, especially for highly-addictive drugs such as Xanax and other benzos. Discuss this with multiple members of your care team to understand the risks.

The prevalence of POTS is hard to pinpoint, but it’s estimated that it could affect up to three million people in the United States alone. Many patients experience a lengthy delay in diagnosis, often because doctors aren’t familiar with the condition or because its symptoms overlap with those of more commonly known disorders beyond anxiety to include blood pressure issues.

For those struggling right now to get a correct diagnosis, here are some clues and tips to discern POTS from anxiety:

1. Postural Changes: One hallmark of POTS is the symptom flare-up upon changing positions, like standing up. This doesn’t typically happen with anxiety.
2. Heart Rate Monitoring: Using a heart rate monitor can be an invaluable tool. A significant increase in heart rate from lying down to standing—by 30 beats per minute or more for adults, or 40 beats per minute or more for adolescents—is indicative of POTS.
3. Consistency and Triggers: While anxiety can come and go and is often triggered by stressors, POTS symptoms are more consistent and tied to physical positions or exertions rather than emotional stress.
4. Additional Symptoms: POTS may also present with non-anxiety like symptoms like blood pooling in the feet and legs, extreme fatigue, and temperature regulation issues, which are not typical of anxiety.
5. Medical Testing: Unlike anxiety, which can be diagnosed based on clinical interviews and psychological evaluations, POTS requires specific physical tests, such as heart rate monitoring, EKGs or a tilt table test, which are not routinely performed during psychological assessments.Tests like a tilt table test, where your reaction to changes in position is measured in a controlled environment, can confirm a diagnosis of POTS. Such tests are rarely part of anxiety disorder diagnosis. It measures the difference in your heart rate, blood pressure and more in the 10-minute watch period from lying flat to being upright- all while strapped to a medical stretcher table that moves. It’s really a torture chamber for patients with POTS as it’s designed to induce fainting, vomiting and dysregulation to prove your stated symptoms. 

Patients with POTS often appear anxious because they are dealing with distressing, unexplained symptoms, which can bias healthcare providers towards a psychiatric diagnosis. Add on the reality that patients are often getting gaslighted –  we are anxious during doctor appointments with so much to prove on the line in a few minutes. Through my journey, I learned that advocating for myself was crucial. I had to push for tests, seek out specialists, and sometimes, educate my healthcare providers with the information I had gathered- bypassing the quick dismissals as a hypochondriac.

Combating Misdiagnosis
To counteract these issues, it’s crucial for both patients and healthcare providers to be educated about POTS and its symptoms. Patients should document their symptoms meticulously and seek out specialists who are knowledgeable about autonomic disorders or EDS. Physicians need to consider POTS in patients presenting with symptoms like rapid heart rate, particularly when these symptoms are triggered by postural changes.

A proper diagnosis of any type of dysautonomia hopefully means you have access to see an expert cardiologist for proper treatment, which can significantly improve your long-term quality of life as long as you are willing to put in the work of daily lifestyle habits and self-care routines. Investigate resources at Dysautonomia International including their doctor directory. 

A Call to Action
Misdiagnosis is more than a medical oversight—it’s a significant barrier to accessing the care and support that patients with invisible illnesses desperately need. For those of us living with these conditions, accurate diagnosis and effective treatment are not just medical necessities; they are essential to living our lives to the fullest.

For those who are struggling with similar symptoms and feel their concerns are not being adequately addressed, here are a few strategies:

• Monitor Symptoms: Documenting your heart rate changes in different positions can provide concrete data to discuss with your doctor. Use apps, trackers or other tools where you can demonstrate evidence.
• Seek Specialists: Consult healthcare providers who specialize in cardiology, autonomic disorders, EDS or functional medicine that looks more holistically.
• Educate Yourself and Others: Learn as much as you can about POTS and share this knowledge with your healthcare providers.

Note on Dangers of Reliance on Anxiety Medications, Especially Benzos According to Experts
Taking benzodiazepines when the underlying condition is POTS rather than anxiety can present several risks and complications:

• Symptom Masking: Benzodiazepines can mask symptoms of POTS, such as palpitations and dizziness, without addressing the underlying autonomic dysfunction. This can delay accurate diagnosis and appropriate treatment ​(American College of Cardiology).
• Sedation and Fatigue: Benzodiazepines can cause sedation, fatigue, and cognitive impairment, which can exacerbate the fatigue and cognitive difficulties often experienced by POTS patients​ (Cleveland Clinic).
• Dependence and Withdrawal: Long-term use of benzodiazepines can lead to physical dependence and withdrawal symptoms, which can be particularly challenging for individuals with POTS, who may already experience autonomic instability​ (Standing Up To POTS).
• Blood Pressure Effects: Benzodiazepines can cause a drop in blood pressure, potentially worsening orthostatic intolerance in POTS patients. This can lead to increased dizziness and risk of fainting ​(Cleveland Clinic).
• Impact on Heart Rate: POTS is characterized by an excessive increase in heart rate upon standing. Benzodiazepines might not address this heart rate issue and could potentially interfere with medications or treatments that are more specifically targeted to manage heart rate in POTS ​(Standing Up To POTS).
• Inappropriate Anxiety Focus: Treating POTS symptoms with benzodiazepines can reinforce the incorrect belief that the condition is primarily anxiety-related, leading to inadequate management of the autonomic disorder itself​ (Dysautonomia International).
• For individuals with POTS, it’s important to have a treatment plan that specifically targets dysautonomia, including lifestyle modifications, physical therapy, and potentially medications that address the cardiovascular and autonomic symptoms, rather than focusing on anxiety alone ​(American College of Cardiology). If you’re considering medication for POTS, consulting a healthcare provider with experience in treating autonomic disorders is essential for effective management. 

Moving Beyond Diagnosis
Living with POTS requires a significant lifestyle adjustment to manage symptoms effectively, but it can be done if you’re consistent in your own care and follow the cardiologist’s treatment advice. Starting with increased salt intake, wearing compression garments, and careful management of energy and exertion levels in physical activity to avoid post-exertional malaise (PEM)resulting in crippling fatigue can help. Some medications can also be helpful. Ones that regulate blood pressure and heart rate are often prescribed, such as beta blockers, but be sure to see a doctor who understands POTS. 

For anyone who feels their symptoms have been wrongly attributed to anxiety, I encourage you to trust your instincts. If what you’re experiencing doesn’t fully align with anxiety, or if the treatments for anxiety aren’t helping, it’s worth investigating other causes. You know your body better than anyone else. Finding a healthcare provider who understands POTS and/or dysautonomia can make all the difference in not only managing your health but improving your life. 

Remember: Don’t allow your doctors to refer you to psychiatrists for what is “all in your head.” These practitioners will gladly medicate you to levels that are unhealthy, like the 4mg ER of Xanax I was on daily (the typical dose is .25mg). Imagine a zombie without a  brain barely able to walk. That was me not too long ago. I spent more than a year withdrawing from the drug once accurately diagnosed and being treated by an expert neuropsych who knew how to titrate me down safely from dangerously addictive anxiety drugs.

I’m sharing my story (with no pride and a great deal of shame) in the hopes of shedding light on the complexities of POTS and dysautonomia, conditions often hidden in plain sight and too often misdiagnosed. It’s time for our symptoms to be recognized not as figments of our imagination but as real, tangible, and treatable medical issues. We deserve no less from both the healthcare system and the mental and behavioral support system.

November 2024