How to Get Diagnosed with POTS: A Guide to Navigating the Process

Experiencing dizziness upon standing, a rapid heartbeat, or fatigue? These could be signs of Postural Orthostatic Tachycardia Syndrome, called POTS for short. Getting diagnosed with POTS can be a real struggle, and it’s important to understand why.

POTS is a complex condition that can mimic many other disorders, leading to frequent misdiagnosis. Many healthcare providers are unfamiliar with POTS, which can cause significant delays in proper assessment and treatment.

The wide range of symptoms associated with POTS can make it difficult for both patients and doctors to connect the dots, and there’s no single, definitive test for the condition.

Essential Takeaways:

• Diagnosing POTS Can Be a Challenge: POTS is often misdiagnosed or overlooked due to its varied symptoms that can mirror other conditions and lack of a single definitive test. Many patients face misdiagnosis, dismissal of symptoms, or long delays in receiving proper care.

 

• The Power of Self-Advocacy: Being informed, persistent, and proactive can greatly improve your chances of getting an accurate and timely POTS diagnosis. That’s why it’s so important to learn about the condition, document your symptoms, seek knowledgeable specialists, and advocate for appropriate testing.

This guide is designed to help you navigate these challenges, empowering you to advocate for yourself and receive the care you need. Whether you’re just starting to investigate your symptoms or you’ve been searching for answers for a while now, understanding the diagnosis process is a crucial step toward getting the right care.

• Understanding POTS: What It Is and Why Diagnosis Can Be Challenging
• Steps to Getting Diagnosed with POTS
• Advocating for Yourself: How to Ensure You Get the Right Diagnosis
• What to Do If You Suspect You Have POTS
• The Role of the Sit-Stand Test in POTS Diagnosis
• Common Misdiagnoses and How to Avoid Them
• Taking Control of Your Health: Advocate for Your POTS Diagnosis

Understanding POTS: What It Is and Why Diagnosis Can Be Challenging

POTS is a form of dysautonomia that affects the body’s autonomic nervous system, particularly when changing positions from lying down or sitting to standing (1).

Key Characteristics of POTS

The primary characteristic of this condition is an abnormal increase in heart rate upon standing, often accompanied by a range of symptoms that can vary widely from person to person (1).

Get a full list of POTS symptoms in our comprehensive POTS Symptom Guide.

Diagnostic Challenges for POTS

The POTS diagnosis process can be lengthy. According to a survey by Dysautonomia International, it took on average 5 years and 11 months for people with POTS to get diagnosed, and only 25% are diagnosed within the first year of symptoms (2).

Why POTS is Challenging to Diagnose

Diagnosing POTS can be challenging for several reasons:

• Symptoms can mimic other conditions, leading to misdiagnosis.

• The severity and combination of symptoms can vary greatly between individuals.

• Many healthcare providers are unfamiliar with POTS and its range of symptoms (1).

The survey also found that 27% of patients visited more than 10 doctors for their symptoms before finally being diagnosed with POTS (2). This shows why it’s so important to find healthcare providers familiar with POTS and other autonomic disorders.

The Importance of Self-Advocacy

Given these challenges, it’s crucial for people with POTS to be informed and persistent when seeking answers. In the following sections, we’ll explore how to advocate for yourself and navigate the diagnosis process.

Steps to Getting Diagnosed with POTS

Getting diagnosed with POTS can be a long and challenging process, as we’ve seen from the statistics. So, what can you do to improve your chances of getting an accurate diagnosis sooner? Understanding the typical POTS diagnosis process is a great place to start.

Let’s explore how to get diagnosed with Postural Orthostatic Tachycardia Syndrome, so you know what to expect and how to advocate for yourself along the way.

Step 1: Document Your Symptoms

Keep a detailed symptom diary, noting what you experience, when it occurs, and any potential triggers.

Step 2: Consult with Your Primary Care Physician

Start by discussing your symptoms with your regular doctor. They may perform initial tests or refer you to a specialist.

Step 3: Find a Specialist

Cardiologists, neurologists, or dysautonomia specialists are often involved in diagnosing POTS. Learn how to find the right specialist in your area with our guide to Navigating Healthcare with POTS.

Step 4: Undergo Testing

Several tests are used to diagnose POTS, with the tilt table test being the most important. Learning how to test for POTS is essential for people with POTS, so you know what to expect from the POTS diagnosis process.

Tilt Table Test

This test is considered the gold standard for diagnosing POTS. During this test, you lie flat on a table that can be tilted to different angles. Your heart rate and blood pressure are monitored as the table is slowly tilted to a nearly upright position (usually about 60-80 degrees.

For those with POTS, this change in position triggers an abnormal increase in heart rate without a significant drop in blood pressure. The test typically lasts 30-45 minutes and allows doctors to observe your body’s cardiovascular response to positional changes in a controlled setting (3).

Other Common Tests

Other common tests for POTS include:

• Standing Test: A simpler version of the tilt table test that can be done in a doctor’s office. You’ll be asked to lie down for a few minutes, then stand up while your heart rate and blood pressure are measured at intervals.

• Blood Tests: These help rule out other conditions and check for underlying causes of POTS symptoms.

• ECG or Holter Monitor: These tests record your heart’s electrical activity, either for a short period in the clinic (ECG) or over 24-48 hours during your daily activities (Holter monitor) (3).

Depending on your specific symptoms and medical history, your doctor may recommend additional specialized tests to get a comprehensive picture of your condition and rule out other potential causes of your symptoms.

Step 5: Follow-Up and Diagnosis

After testing you’ll discuss results with your doctor and receive a diagnosis, if appropriate.

Remember, the path to a POTS diagnosis isn’t always straightforward, and it may take time to complete all of these steps. Stay persistent, advocate for yourself, and don’t hesitate to seek second opinions, if needed.

Your active participation in this process is key to obtaining an accurate diagnosis and appropriate treatment plan.

 

Advocating for Yourself: How to Ensure You Get the Right Diagnosis

The survey from Dysautonomia International found that 50% of patients traveled more than 100 miles from home to receive POTS-related medical care (2).

While this may not be feasible for everyone, it shows the importance of seeking out specialists who are knowledgeable about POTS, even if it means traveling further distances for care.

Tips for Self-Advocacy

Self-advocacy is crucial when seeking a POTS diagnosis. Here are some tips to help you navigate the process:

• Prepare for Appointments: Write down your symptoms, questions, and concerns. Bring your symptom diary and any relevant medical records. Consider bringing a friend, partner, or family member for support.

• Communicate Effectively: Be clear and concise about your symptoms and how they impact your life. Use specific examples and timelines. Don’t downplay your symptoms or their impact on your life.

• Ask Questions: Ask you healthcare providers questions like:
  

1. “Are you familiar with POTS?”
2. “What tests do you recommend to investigate my symptoms?”
3. “Can you refer me to a specialist who has experience with POTS?”

These questions can help you assess your provider’s familiarity with POTS and ensure you’re on the right track for a diagnosis.

• Involve Your Support Network: Ask friends or family members to help you advocate, especially if you’re not feeling well enough to do it alone. They can accompany you to appointments, help you communicate your symptoms, and provide emotional support throughout the process. Learn more about how loved ones can support you in our guide to POTS and Relationships.

• Be Persistent: If you feel dismissed, seek a second opinion. Don’t be afraid to switch healthcare providers if necessary.

• Educate Yourself: Stay informed about POTS through reputable sources like Buoy’s POTS Guides. Join support groups to learn from the experiences of other people with POTS.

Remember, you know your body best. Trust your instincts and keep pursuing answers.

What to Do If You Suspect You Have POTS

If you think you might have POTS, it’s important to take proactive steps to gather information and prepare for discussions with healthcare providers. Early action can help streamline the diagnosis process and ensure you’re well-equipped to advocate for yourself.

Here’s what you should do if you suspect you have POTS:

1. Track Your Symptoms: Use a symptom tracker app or journal to record what you’re experiencing.
   
   
2. Identify Triggers: Notice if certain activities, foods, or situations worsen your symptoms.
   
   
3. Research POTS: Learn about the condition from reliable sources.
   
   
4. Prepare for Medical Appointments: Gather your symptom records and questions for your healthcare provider.
   
   
5. Consider At-Home Tests: While these can’t be used for an official diagnosis, simple tests like the sit-stand test can provide useful information to discuss with your doctor.

By taking these steps, you’ll be better prepared to discuss your concerns with healthcare professionals and navigate the diagnosis process. Remember, while self-research is valuable, it’s also important to seek professional medical advice for a proper diagnosis and treatment plan.

 

The Role of the Sit-Stand Test in POTS Diagnosis

The sit-stand test, also known as the “Poor Man’s Tilt Table Test,” can be a useful tool when first trying to get a POTS diagnosis.

1. Sit quietly for 5 minutes.
   
   
2. Measure your heart rate and blood pressure.
   
   
3. Stand up and remain still.
   
   
4. Measure your heart rate and blood pressure at 1 minute, 3 minutes, 5 minutes, and 10 minutes.

A heart rate increase of 30+ beats per minute (or 40+ for those aged 12-19) within 10 minutes of standing, without significant blood pressure drop, may indicate POTS. While this test isn’t definitive, it can provide valuable information to share with your doctor (3).

Common Misdiagnoses and How to Avoid Them

POTS is frequently misdiagnosed due to its numerous possible symptoms that can be strikingly similar to other conditions. Understanding this can help you advocate for proper testing and evaluation.

POTS Misdiagnosis Statistics

The Dysautonomia International survey revealed that prior to being diagnosed with POTS, 59% of people were told by a doctor that their symptoms were “all in your head,” and 69% were diagnosed with an anxiety disorder (2).

The Importance of Finding the Right Doctor

However, peer-reviewed research shows that people with POTS are no more likely to be anxious than the general public (2,4). That’s why it’s so important to find the right doctor who will listen to your concerns and take them seriously.

Don’t Be Afraid to Switch Doctors

Don’t be afraid to switch doctors if you feel dismissed or misunderstood—finding a healthcare provider who is knowledgeable about POTS can make all the difference in getting an accurate diagnosis.

Conditions Often Confused with POTS

POTS is often misdiagnosed as:

• Anxiety or Panic Disorders: The rapid heartbeat and dizziness associated with POTS can be mistaken for anxiety. However, studies using cognitive-based anxiety assessment tools have shown that those with POTS tend to have lower anxiety levels than controls (5).
  

• Chronic Fatigue Syndrome: Fatigue is a common symptom in both conditions, leading to potential confusion.
  

• Depression: The fatigue, brain fog, and reduced quality of life experienced by people with POTS can be misinterpreted as depression.
  

• Vasovagal Syncope: This causes fainting, which can also occur in POTS.
  

• Deconditioning: Physical deconditioning can cause some POTS-like symptoms.
  

• Heart Arrhythmias: Irregular heartbeats may be mistaken for the tachycardia in POTS.
  

• Inappropriate Sinus Tachycardia: Another condition involving increased heart rate that can be confused with POTS (5).

Understanding how POTS can be misdiagnosed is essential in advocating for proper testing and evaluation. While these conditions can coexist with POTS, it’s important to ensure that POTS itself is not overlooked.

Always push for a comprehensive evaluation that considers the full range of your symptoms and their relationship to posture changes.

The Consequences of Misdiagnosis

The consequences of being misdiagnosed can be significant and include:

• Delayed Diagnosis: Correct diagnosis of POTS is often delayed by several years.

• Unnecessary Testing: Patients may undergo extensive and expensive investigations that yield no results.

• Inappropriate Psychiatric Diagnoses: Many people are wrongly diagnosed with psychiatric conditions. This may lead to a long-term distrust of medical professionals.

• Severe Disability: Due to orthostatic intolerance, some people become wheelchair users or even bed-bound, often unable to continue education or employment.

It’s worth noting that with proper diagnosis and treatment, 80-90% of people who have POTS respond to treatment, and about 60% return to previous levels of functioning (5). This is why it’s so important to get an accurate diagnosis as soon as you can.

How to Avoid Misdiagnosis

To avoid misdiagnosis, follow these steps:

• Be Specific: Clearly describe your physical symptoms, especially those related to position changes. Keep a detailed log of your symptoms, including when they occur and what triggers them.

• Emphasize Your Physical Symptoms: Make it clear that your symptoms are primarily physical, even if they cause you emotional distress.

• Request Appropriate Testing: Ask about tests specific to POTS, like the tilt table test.

• Find a Specialist: Look for doctors experienced in dysautonomia or autonomic disorders.

• Be Persistent: If you feel your concerns aren’t being addressed, get another opinion from a different medical provider.

These steps can help ensure you’re on the right path to getting diagnosed with Postural Orthostatic Tachycardia Syndrome.

Remember, getting the right diagnosis is crucial for proper treatment. By being informed and proactive, you can help ensure that your condition is correctly identified and managed appropriately.

Taking Control of Your Health: Advocate for Your POTS Diagnosis

Navigating the path to a POTS diagnosis can be challenging, but remember you are your best advocate. By understanding how to get diagnosed with POTS, you can take control of your health.

Stay Persistent

Don’t be discouraged if you face setbacks or dismissals along the way. Many POTS patients have similar experiences before finding the right healthcare provider who understands their condition.

Your persistence is the key to getting the care you need and deserve.

Key Points to Remember

Remember these strategies as you move forward:

• Trust your body and your instincts. You know when something isn’t right.

• Stay informed about POTS and keep up with the latest research.

• Be prepared for appointments with detailed symptom logs and questions.

• Don’t hesitate to get second opinions if you feel unheard or dismissed.

• Connect with support groups or patient advocacy organizations for guidance and support.
  

To further support your journey with POTS, check out our other POTS guides. These resources cover various aspects of living with POTS and can provide valuable insights as you navigate your diagnosis and beyond.

Your Journey is Unique

Remember, your journey to diagnosis is unique, and it’s okay to take it one step at a time. Trust yourself, don’t give up, and know that understanding and proper care are within your reach.

 

 

 

References:

 

1. Cleveland Clinic. (2022). Postural Orthostatic Tachycardia Syndrome (POTS). Retrieved from https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots
   
   
2. Dysautonomia International. (2019). Diagnostic Delay in POTS. Retrieved from https://www.dysautonomiainternational.org/page.php?ID=184
   
   
3. Standing Up to POTS. (n.d.). Testing for POTS. Retrieved from https://www.standinguptopots.org/resources/diagnosing-pots
   
   
4. Raj, V., Haman, K. L., Raj, S. R., Byrne, D., Blakely, R. D., Biaggioni, I., Robertson, D. & Shelton, R. C. (2009). Psychiatric Profile and Attention Deficits in Postural Tachycardia Syndrome. Journal of Neurology, Neurosurgery, and Psychiatry, 80(3), 339–344. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758320/
   
   
5. Kavi, L., Gammage, M. D., Grubb, B. P. & Karabin, B. L. (2012). Postural Tachycardia Syndrome: Multiple Symptoms But Easily Missed. The British Journal of General Practice: The Journal of the Royal College of General Practitioners, 62(599), 286–287. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3361090/