Why POTS Is Often Misdiagnosed—and How to Advocate for Yourself

Postural Orthostatic Tachycardia Syndrome (POTS) is a complex and often misunderstood condition that affects the autonomic nervous system, primarily characterised by a significant increase in heart rate upon standing. While awareness of the condition is growing, POTS is still frequently misdiagnosed, leaving many patients to suffer for years without answers.

If you’ve been struggling with mysterious symptoms like dizziness, brain fog, rapid heartbeat, or chronic fatigue, you’re not alone—and POTS symptoms may be the underlying cause. This blog explores why POTS is so often missed by healthcare providers and how you can effectively advocate for your diagnosis and treatment.

What Is POTS?

POTS, or Postural Orthostatic Tachycardia Syndrome, is a form of dysautonomia, which involves dysfunction of the autonomic nervous system. The condition is defined by:

• A heart rate increase of 30+ beats per minute (or over 120 bpm total) within 10 minutes of standing in adults 
• An increase of 40+ bpm in adolescents 
• Without a significant drop in blood pressure

 

POTS affects various systems in the body, causing a wide range of symptoms, often leading to confusion in diagnosis.

Common POTS Symptoms

POTS symptoms can vary widely but commonly include:

• Dizziness or lightheadedness when standing 
• Rapid heartbeat (tachycardia) 
• Chronic fatigue 
• Brain fog or trouble concentrating 
• Nausea and gastrointestinal issues 
• Cold hands and feet 
• Exercise intolerance 
• Headaches 
• Anxiety-like symptoms

 

These symptoms overlap with many other conditions, contributing to POTS being misdiagnosed or dismissed.

Why Is POTS So Often Misdiagnosed?

1. Symptoms Mimic Other Conditions

One of the main reasons POTS is misdiagnosed is that its symptoms resemble those of several other disorders:

• Anxiety or panic disorders (due to rapid heart rate and lightheadedness) 
• Chronic Fatigue Syndrome 
• Fibromyalgia 
• Irritable Bowel Syndrome (IBS) 
• Depression

 

Because of this overlap, patients are often referred to mental health services or given treatments that don’t address the root cause.

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2. Lack of Awareness Among Healthcare Providers

Although POTS is not rare—affecting an estimated 1 to 3 million people in the U.S.—many healthcare providers are still unfamiliar with it. It is rarely covered in depth during medical training, which leads to delayed recognition and inadequate evaluation of patients presenting with POTS symptoms.

3. Symptoms Seem “Invisible”

Unlike conditions with clear visual or measurable markers, POTS symptoms can seem invisible or subjective. This often leads to patients feeling dismissed or labelled as “overreacting” or “anxious.”

4. Fluctuating Symptoms

Another reason POTS is hard to diagnose is the variability of symptoms. Some days may be manageable, while others feel debilitating. This inconsistency can lead doctors to underestimate the condition’s impact or miss it entirely during routine office visits.

5. Gender Bias

POTS disproportionately affects women, especially between the ages of 15 and 50. Unfortunately, studies show that women are more likely to have their physical symptoms dismissed as emotional or hormonal, contributing to further delays in diagnosis.

How Long Does It Take to Get Diagnosed?

On average, it takes 4 to 6 years and visits to multiple healthcare providers before a patient with POTS receives a proper diagnosis. During this time, they may receive numerous incorrect diagnoses, from anxiety and deconditioning to “it’s all in your head.”

This is why self-advocacy is crucial in the journey toward diagnosis and treatment.

How to Advocate for Yourself

If you suspect you may have POTS or feel your symptoms are not being taken seriously, follow these steps to advocate for yourself effectively:

1. Track Your Symptoms Consistently

Keep a detailed symptom journal that records the following:

• Time of day 
• Symptoms experienced 
• Triggers (e.g., standing, eating, heat) 
• Heart rate (using a smartwatch or pulse oximeter) 
• Blood pressure, if available 

 

This data can help demonstrate patterns to your healthcare provider.

2. Learn the Diagnostic Criteria

Familiarise yourself with the official diagnostic criteria for POTS:

• Increase in heart rate by 30+ bpm within 10 minutes of standing 
• No significant drop in blood pressure 
• Presence of symptoms for more than 6 months

 

Knowing the criteria empowers you to guide conversations with your doctor.

3. Request Specific Tests

Ask for a standing test, active stand test, or tilt table test—these are designed to monitor heart rate and blood pressure changes upon standing. If your provider is unsure, ask to be referred to a cardiologist or neurologist familiar with autonomic disorders.

4. Bring Support and Research

Bring someone with you to appointments to provide support and validation. You can also bring medical literature from reputable sources like:

• Dysautonomia International 
• NIH or Mayo Clinic 
• Peer-reviewed journal articles

 

This shows your commitment to your health and educates your provider.

5. Don’t Be Afraid to Get a Second Opinion

If your symptoms are being dismissed or misinterpreted, it’s okay to seek a second or third opinion. You know your body best, and persistence is key.

Treatment After Diagnosis

While there’s no one-size-fits-all cure for POTS, proper management can significantly improve quality of life. Treatment often includes:

• Increased salt and fluid intake 
• Use of compression garments 
• Medications (such as beta-blockers, fludrocortisone, or midodrine) 
• Physical therapy and graded exercise 
• Dietary adjustments 
• Sleep and stress management

 

Getting the right diagnosis opens the door to a personalised treatment plan.

FAQ: Understanding and Advocating for POTS

❓ Why do doctors often confuse POTS with anxiety?

Answer: POTS symptoms like rapid heartbeat, dizziness, and shortness of breath mimic panic attacks. Without proper autonomic testing, the root cause can be overlooked.

❓ What should I bring to my doctor’s appointment?

Answer: A symptom journal, heart rate logs, medical history, list of medications, and credible research articles related to POTS.

❓ How can I track POTS symptoms at home?

Answer: Use a smartwatch or heart rate monitor to measure your pulse when lying down and standing. Record symptoms, hydration, sleep, and activity levels.

❓ Is it okay to switch doctors if I feel dismissed?

Answer: Absolutely. Advocating for your health includes finding a provider who listens, believes you, and is willing to explore all possibilities—including POTS.

❓ Can POTS symptoms improve over time?

Answer: Yes, with proper treatment, lifestyle changes, and symptom management, many people experience significant improvements.

Final Thoughts

If you’ve been living with frustrating, unexplained symptoms for years, you may be dealing with POTS. Due to its complex nature and symptom overlap with other conditions, POTS is often misdiagnosed—but it doesn’t have to stay that way. With knowledge, self-advocacy, and the right medical support, you can take control of your diagnosis journey.

You are not imagining your symptoms. Keep pushing for answers. The right diagnosis can change everything.

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