A woman with POTS goes on a hike, dispelling the misconception that people with POTS should avoid all physical activity.

Myths and Misconceptions About POTS: What You Need to Know

Living with Postural Orthostatic Tachycardia Syndrome (POTS) can be challenging enough without having to deal with the many myths and misconceptions that surround this condition. POTS is a complex disorder that affects the autonomic nervous system, causing symptoms like dizziness, rapid heartbeat, and fatigue.

Despite being a relatively common condition, affecting an estimated 1 to 3 million Americans, POTS is often misunderstood by the general public and even some healthcare professionals.

As a result, many people with POTS face stigma, dismissal of their symptoms, and a lack of proper support. That's why it's so important to separate fact from fiction when it comes to POTS.

Essential Takeaways:
  • Dispelling Common Myths About POTS: POTS (Postural Orthostatic Tachycardia Syndrome) is often misunderstood, leading to several myths and misconceptions. By debunking these myths, we can better support and understand those living with POTS.

  • Effective Management Strategies for POTS: Contrary to the misconception that POTS can be cured by exercise alone, managing this condition typically requires a multifaceted approach. It’s important to work with healthcare providers to develop a personalized plan that addresses your individual needs and unique symptoms.

In this article, we'll explore some of the most common myths and misconceptions about POTS and provide you with the information you need to advocate for yourself and educate others.

So, let's get started and bust some POTS myths together!

What is POTS?

Before we get to the myths, let’s take a quick moment to define POTS. POTS is a condition that affects the autonomic nervous system, which controls things your body does automatically like regulating your heart rate and blood pressure.

The main symptom of POTS is a rapid increase in heart rate when you stand up, often accompanied by dizziness, lightheadedness, and fatigue. Other common symptoms of POTS include:

  • Brain fog and difficulty concentrating
  • Headaches
  • Nausea and digestive issues
  • Shakiness or tremors
  • Exercise intolerance

These symptoms can vary in severity from person to person and can have a significant impact on daily life. But despite the challenges of living with POTS, it’s important to remember that you’re not alone and there are ways to manage your symptoms and improve your quality of life (1).

Did you know that the POTS experience can be different for everyone? Learn more about possible symptoms in our guide, Recognizing the Symptoms of POTS.

Common Myths About POTS

Now, let’s tackle some of the most common myths and misconceptions about POTS.

Myth #1: POTS is Just Anxiety

One of the most persistent myths about POTS is that it’s just anxiety. While it’s true that some POTS symptoms can mimic anxiety, such as rapid heartbeat and dizziness, POTS is a distinct medical condition with a different underlying cause.

Research has shown that POTS involves a malfunction of the autonomic nervous system, which can be triggered by any number of factors, such as viral illness, pregnancy, or prolonged bed rest. This malfunction causes an abnormal response in heart rate and blood pressure regulation, leading to the symptoms of POTS.

So while anxiety can certainly coexist with POTS and worsen symptoms, it’s not the root cause of the condition. It’s important for healthcare providers to recognize POTS as a legitimate medical disorder and not dismiss patients’ symptoms as merely psychological (1,2).

Myth #2: POTS is Not a Serious Condition

Another common myth is that POTS is not a serious or debilitating condition. But for many people living with POTS, the reality is far different. POTS symptoms can significantly impact daily functioning, making it difficult to work, go to school, or participate in social activities.

In severe cases, POTS can even be disabling, leaving individuals unable to stand or walk for more than a few minutes at a time. The chronic nature of POTS symptoms can also take a toll on mental health, leading to feelings of isolation, frustration, and despair (2,3).

It’s crucial for friends, family, and healthcare providers to recognize the serious impact POTS can have on a person’s life and provide appropriate support and accommodations.

Myth #3: POTS Can Be Cured with Exercise

While exercise can be an important part of managing POTS symptoms, it’s a myth that exercise alone can cure the condition. POTS is a complex disorder that often requires many different kinds of treatment (1).

Research has shown that cardiovascular deconditioning (i.e. lack of fitness and low blood volume) contributes significantly to POTS and its functional disability. Exercise can help improve cardiovascular fitness, increase blood volume, and reduce deconditioning, all of which can help alleviate POTS symptoms (4).

However, it’s important for POTS patients to work with a knowledgeable healthcare provider to develop a safe exercise plan that is right for you. Overexertion or improper exercise techniques can actually worsen symptoms.

In addition to exercise, POTS treatment may include medications to regulate heart rate and blood pressure, dietary changes to increase fluid and salt intake, and lifestyle modifications to manage triggers and conserve energy. A comprehensive treatment plan tailored to your individual needs is the key to effectively managing POTS (1,2).

By combining these approaches, people with POTS can effectively manage their symptoms and improve their quality of life.

Misconceptions About POTS Management

Besides the myths about what POTS is, there are also several misconceptions about how to manage the condition. Let’s clear some of them up.

Misconception #1: POTS Patients Should Avoid All Physical Activity

While it’s true that overexertion can worsen POTS symptoms, it’s a misconception that POTS patients should avoid all physical activity. In fact, regular exercise is an important part of managing POTS.

The key is to start slowly and gradually increase intensity and duration over time. Many patients benefit from exercises like swimming, recumbent biking, or rowing that allow them to exercise without having to stand upright. Resistance training can also be helpful for building muscle strength and improving circulation.

Working with a physical therapist who understands POTS can be incredibly valuable in developing a safe and effective exercise routine. Remember, every POTS patient is different, so what works for one person may not work for another. Listen to your body and don’t push yourself beyond your limits (1,2).

Misconception #2: There is a One-Size-Fits-All Treatment for POTS

Another misconception about managing POTS is that there’s a single treatment protocol that works for everyone. In reality, POTS treatment is highly individualized and what works for one person may not work for another.

Treatment options for POTS can include:

  • Medications to regulate heart rate and blood pressure.
  • Dietary changes to increase fluid and salt intake.
  • Compression garments to improve blood flow.
  • Physical therapy and exercise programs.
  • LIfestyle modifications to manage triggers and conserve energy.

Working closely with a healthcare provider who understands POTS is essential for developing a personalized treatment plan that addresses your specific symptoms and needs. Don’t be afraid to advocate for yourself and speak up if something isn’t working for you (1,2,5).

Discover how eating the right foods can help you manage your POTS symptoms with our POTS Diet and Nutrition Guide.

Misconception #3: A High-Salt Diet is Bad for Everyone

For most people, a high-salt diet is discouraged due to its potential to raise blood pressure. But for many people with POTS, increasing salt intake can actually be an important part of managing their symptoms.

POTS can cause blood to pool in the lower legs, leading to a decrease in blood volume and low blood pressure. Increasing salt intake can help the body retain more fluid, increasing blood volume and improving symptoms like dizziness and fatigue.

Of course, it’s important to work with a healthcare provider to determine the right amount of salt for your individual needs. And not all salt is created equal – choosing pure, unrefined sea salt can provide additional trace minerals that support hydration and overall health (1).

A pile of sea salt crystals with text explaining the pros and cons of sea salt, noting it contains beneficial trace minerals without the heavy metal contamination seen in some other salt sources.

Pure sea salt like Buoy’s Rescue Salt is an excellent choice for managing POTS symptoms

 

Addressing Stigma and Misinformation

Living with POTS can be challenging enough without having to deal with the added burden of stigma and misinformation. Unfortunately, many POTS patients face dismissal, disbelief, and lack of understanding from those around them.

Keep in mind – despite the fact that POTS was first described in 1993, the general public is just now becoming aware of the condition (5). While it’s not an excuse to dismiss other people’s experiences, it does help explain why so many are simply not educated about the condition.

By sharing reliable information and personal stories, we can help reduce the stigma and build a more supportive community. Educating others about POTS and advocating for awareness are important steps in supporting people living with this condition.

How Stigma Affects POTS Patients

The stigma surrounding POTS can have a profound impact on patients’ mental health and quality of life. When symptoms are dismissed as “just anxiety” or “all in your head,” it can lead to feelings of isolation, frustration, and even self-doubt.

Many POTS patients report feeling like they have to constantly prove the validity of their illness to friends, family, and even healthcare providers. This can be exhausting and demoralizing and can even lead to delayed diagnosis and treatment.

It’s important for everyone – from healthcare providers to loved ones to the general public – recognize POTS as a legitimate medical condition and to treat those living with it with compassion and respect.

Combating Misinformation

One of the best ways to combat stigma and misinformation about POTS is through education. If you’re living with POTS, don’t be afraid to speak up and share your experiences. You never know who you might help by raising awareness and dispelling myths.

If you’re a friend or family member of someone with POTS, take the time to learn about the condition and how you can best support your loved one. Attend doctor’s appointments, read up on the latest research, and ask questions.

And if you’re a healthcare provider, stay up-to-date on the latest POTS research and treatment options. Listen to your patients and validate their experiences. Remember that just because a condition isn’t visible doesn’t mean it’s not real.

The Importance of Advocacy

Finally, advocacy plays an important role in improving the lives of those with POTS. By speaking up and sharing our stories, we can raise awareness, push for better research and treatment options, and fight for the accommodations and support we need to thrive.

Whether it’s participating in a clinical trial, joining a support group, or simply sharing your experiences on social media, every act of advocacy matters. Together, we can create a world where POTS is widely understood, effectively treated, and fully supported.

And remember, you are not alone in this fight. The POTS community is full of resilient, inspiring individuals who are here to support and uplift each other. Lean on that community when you need to, and don’t hesitate to reach out for help.

At Buoy, we’re proud to be a part of the POTS community and to offer products that support hydration and help manage symptoms. but more than that, we’re here to listen, to learn, and to cheer you on every step of the way.

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. Zhao, S. & Tran, V.H. (Updated August 7, 2023). Postural Orthostatic Tachycardia Syndrome. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK541074/

  3. Johns Hopkins Medicine. (n.d.). Postural Orthostatic Tachycardia Syndrome (POTS). Retrieved from https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots

  4. Fu, Q. & Levine, B. D. (2018). Exercise and Non-Pharmacological Treatment of POTS. Autonomic Neuroscience: Basic & Clinical215, 20–27. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6289756/

  5. Safavi-Naeini, P. & Razavi, M. (2020). Postural Orthostatic Tachycardia Syndrome. Texas Heart Institute Journal47(1), 57–59. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7046364/

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