POTS Syndrome Awareness – Your Guide To Recovery & A Better Life

POTS syndrome awareness has vastly increased since the onset of COVID-19 and the rise in POTS cases. And while that’s a great sign of progress, there’s still a lot of work to be done. 

Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects blood flow and the autonomic nervous system, leading to symptoms such as dizziness, rapid heart rate, and fainting when standing. Despite its impact on daily life, POTS is often missed, misdiagnosed, and overlooked, making POTS syndrome awareness crucial for early diagnosis and better treatment options.

This article will explore POTS syndrome, its symptoms, common causes, how to find a diagnosis, and the importance of raising awareness. Whether you are a patient, caregiver, or advocate, understanding POTS can help improve the lives of those affected.

What is POTS Syndrome?

POTS (Postural Orthostatic Tachycardia Syndrome) is a neurological disorder of the autonomic nervous system, specifically affecting the way blood circulates. It is a form of dysautonomia that causes the heart rate to increase significantly upon standing, often leading to lightheadedness and fainting. POTS predominantly affects younger individuals aged 15-45 years, with a distinct female predominance (approximately 80%). 

There are multiple factors and reasons for POTS, like underlying autoimmune conditions, a previous history of concussions, and genetic factors like Ehler-Danlos Syndrome (EDS). Patients are also reporting POTS symptoms due to long-COVID-19 as well, but more research is needed to understand why. 

Key Characteristics of POTS:

• Abnormal heart rate increases of more than 30 beats per minute (or more than 40 in adolescents) within 10 minutes of standing, spread throughout the duration of time, not always in one instance.
  • Note: In severe cases, patients can also experience these changes in heart rate when lying down or seated.
• Symptoms often worsen when standing for long periods.
• It predominantly affects women between the ages of 15 and 50.
• Temperature intolerance often accompanies these symptoms, which can feel similar to Raynaud’s Disease.

Symptoms of POTS Syndrome

POTS symptoms vary from person to person, but commonly include:

Cardiovascular Symptoms

• Rapid heart rate (tachycardia) upon standing
• Palpitations
• Low blood pressure in some cases

Neurological Symptoms

• Dizziness or lightheadedness
• Brain fog and difficulty concentrating
• Frequent headaches

Gastrointestinal Symptoms

• Nausea
• Bloating
• Constipation or diarrhea

Other Symptoms

• Chronic fatigue
• Exercise intolerance
• Sweating abnormalities or temperature intolerances

Recognizing these symptoms is key to POTS syndrome awareness, as early detection can lead to better management. Providers, caretakers, and patients need to know that POTS can present in an array of ways, which is why it’s so difficult to find a diagnosis and get proper treatment. 

Causes and Risk Factors of POTS

The exact cause of POTS is not fully understood, but there are several factors that often contribute to its development:

1. Nervous System Dysfunction

POTS is classified as a disorder of the autonomic nervous system, affecting blood flow regulation and neurological function in general. 

2. Viral or Bacterial Infections

Many patients report developing POTS after infections like mononucleosis, COVID-19, or Lyme disease.

3. Autoimmune Disorders

Autoimmune conditions such as lupus and Sjögren’s syndrome have been linked to POTS, suggesting a potential autoimmune component. 

4. Genetic Factors

A family history of dysautonomia or connective tissue disorders like Ehlers-Danlos syndrome may increase the risk of developing POTS.

5. Hormonal Changes

As previously listed, women are more affected than men, suggesting hormones may also play a role in POTS development. 

Once again, there is much to be researched and understood about POTS, which is why it’s essential to continue to push for greater POTS syndrome awareness in the public and private sectors. 

How is POTS Diagnosed?

Since POTS is often misdiagnosed as anxiety or dehydration, POTS syndrome awareness is essential for proper diagnosis. 

Common Diagnostic Tests:

1. Tilt Table Test – This diagnostic assessment measures heart rate and blood pressure responses while transitioning from lying down to standing, with repeated measurements taken every few degrees.
2. Active Stand Test (“A Quick POTS Test”) – This is a simple test where a provider will monitor heart rate and blood pressure changes when standing for a duration of time.
3. Blood Tests – Diagnostic blood chemistry tests are essential to rule out other conditions like thyroid disorders or vitamin deficiencies.

Getting an accurate diagnosis requires persistence, which is why increasing POTS syndrome awareness is critical for patients and healthcare providers. Patients must find providers who are experienced in POTS so they can find appropriate treatment and get much-needed support for their care… But it’s not always that easy.

Treatment and Management of POTS

There is no “cure” for POTS, but it’s possible to manage and improve symptoms with lifestyle changes and medical interventions. And this is where assessing underlying infections, genetics, autoimmune factors, and understanding how previous trauma comes into the picture. 

Lifestyle Modifications

Lifestyle, habits, and daily activities are crucial for the management and treatment of POTS symptoms. 

• Increase Electrolyte and Fluid Intake – Helps maintain blood pressure and circulation.
• Compression Garments – Improve blood flow and reduce blood pooling in the legs.
• Functional Neurology and Therapy – Gradual brain-based therapies and personalized exercise programs can help improve circulation, neurological function, and metabolic endurance.
• Avoid Triggers – Heat, dehydration, and standing for long periods can worsen symptoms.
• Physical Exercise – Exercise and low-grade cardiovascular therapies are essential for conditioning the nervous system and brain to optimize blood flow and neurological function.

Medications for POTS

Medications can be a very effective route of treatment for patients struggling with POTS, and while they can manage symptoms, they don’t always treat the root cause and will not longer be effective if stopped. 

• Beta-blockers – Reduce heart rate and improve symptoms.
• Fludrocortisone – Helps the body retain fluids and maintain blood pressure.
• Midodrine – Increases blood vessel constriction to improve circulation.

Individual treatment plans vary, but awareness helps patients access appropriate care sooner. Once again, finding providers who have experience treating POTS is invaluable for someone who continues to deal with symptoms. 

Are you someone who is still struggling with POTS? At The Neural Connection, we’ve worked with many patients dealing with POTS symptoms and have been able to help them maximize their quality of life through personalized care.

If you’re still looking for solutions, reach out to us today for a free consultation! 

Click HERE for your FREE consultation

The Importance of POTS Syndrome Awareness

Despite affecting millions worldwide, POTS remains underdiagnosed. Raising awareness can lead to:

1. Earlier Diagnoses – Reducing the time patients suffer without proper treatment.
2. Better Research and Funding – More awareness leads to increased medical research.
3. Improved Healthcare Training – Educating doctors about POTS leads to better patient outcomes.
4. Support for Patients – More awareness means better community support and advocacy.

Many organizations, such as Dysautonomia International, actively work to spread POTS syndrome awareness and support research efforts. And while these efforts are gaining momentum, there is much work to do before this becomes a mainstream effort across the world. 

How to Raise Awareness for POTS Syndrome

If you want to help increase awareness, here are some impactful ways:

1. Share Personal Stories

Sharing experiences through blogs, social media, or support groups can educate others about POTS. There are massive groups on TikTok, Facebook, and Instagram that can support patients and their families in managing POTS symptoms. These groups can be vital for finding solutions, providing education, and sharing stories with the community.

2. Support POTS Syndrome Awareness Campaigns

Participate in awareness events like Dysautonomia Awareness Month in October. Financial donations and social media campaigns can often bring more awareness and make patients feel as though they’re not alone on their journey. 

3. Educate Medical Professionals

Encourage discussions with healthcare providers about POTS and its impact. Sadly, most medical providers have no idea about POTS, which makes it difficult to seek treatment and find proper solutions. 

4. Advocate for Research Funding

Support organizations that fund research into dysautonomia and POTS treatment. Groups like the Familial Dysautonomia Foundation and the Dysautonomia Information Network are driving efforts to find new treatments, therapies, and protocols to improve the treatment of POTS. 

5. Wear Awareness Colors

Teal is the color for POTS awareness—wearing teal ribbons or accessories can spark conversations.

By increasing POTS syndrome awareness, we can push for better diagnosis, treatment, and quality of life for those affected.

FAQs About POTS Syndrome

1. Is POTS a lifelong condition?

POTS can improve with time and proper management, but some individuals may experience symptoms long-term. Depending on the underlying reason for the POTS symptoms, patients can live a high quality of life if they find the appropriate care. 

2. Can POTS be cured?

There is no known cure, but lifestyle adjustments and medications can significantly improve symptoms. Clinically, we’ve seen great success in treating patients with post-concussion POTS, but once again, there is no known cure for POTS in general. 

3. How common is POTS?

POTS affects approximately 1-3 million people in the U.S., but many cases go undiagnosed.

4. Does POTS primarily affect young women?

While it is more common in women between 15-50, men and children can also develop POTS. Overall, women are more often affected than men with POTS. 

5. Can diet and nutrition help manage POTS?

Yes, increasing electrolytes and fluid intake can help regulate blood pressure and reduce symptoms. We also understand that diet and nutrition can make notable differences in managing symptoms and alleviating underlying inflammation.

6. What is the link between POTS and COVID-19?

Many patients have developed POTS symptoms after COVID-19, suggesting a possible connection between viral infections and autonomic dysfunction. The data is still early, but it appears as though underlying inflammation and pre-existing conditions also play a role in the onset of POTS following COVID-19. 

Why POTS Syndrome Awareness is Needed Now More Than Ever…

POTS is a complex neurological condition that affects the autonomic nervous system, leading to debilitating symptoms. Despite its prevalence, it remains underdiagnosed, making POTS syndrome awareness essential for early intervention and better treatment options.

By spreading awareness, supporting clinical research, and advocating for proper diagnosis, we can help those affected by POTS live healthier, more manageable lives. Whether you are a patient, caregiver, or advocate, your efforts in raising awareness can make a meaningful impact.

Still struggling with POTS symptoms and don’t know where to turn?

We’ve worked with hundreds of POTS patients at The Neural Connection and will always give you our honest opinion as to whether or not we think we can help you… 

Here’s a testimonial from a former patient of ours, Ashten, who was dealing with POTS after contracting COVID-19:

We’re here when you’re ready to take the next step… 

Reach out to schedule your consultation today!

*Note: The information provided in this article is for educational purposes only and does not constitute a doctor-patient relationship. Patients are advised to consult their medical provider or primary care physician before trying any remedies or therapies at home.