
Today is Postural Orthostatic Tachycardia Syndrome (POTS) Awareness Day. For many living with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD), POTS is a frequent companion diagnosis, adding unique challenges to everyday life. Though invisible, POTS affects multiple aspects of daily function—from standing up to digesting food—often in profound ways.
What is POTS?
POTS is a form of dysautonomia, which means it affects the autonomic nervous system. Its hallmark is an abnormal increase in heart rate upon standing, without the usual drop in blood pressure. This rapid change can make standing or even walking short distances exhausting and difficult. For those living with it, POTS is far more than a simple heart rate issue; it triggers a variety of symptoms, each impacting the body differently and unpredictably.
Recognizing the Symptoms of POTS
POTS symptoms go far beyond a fast heart rate, affecting everything from pain levels to digestive health. Common symptoms include:
Pain and Fatigue: Chronic pain and fatigue can make even simple daily activities exhausting.
Dizziness and Fainting: Dizziness upon standing and the risk of fainting make social and work environments challenging.
Blood Pooling: Blood may pool in the legs, causing swelling and discomfort.
Light Sensitivity and Vision Issues: Sensitivity to light, blurred vision, and tunnel vision are often reported.
Gastrointestinal Issues: Digestive challenges impact appetite, digestion, and sometimes nutrient absorption.
Heat Intolerance and Sweating Issues: Difficulty regulating body temperature and heat sensitivity are common.
Brain Fog: Cognitive difficulties like trouble concentrating and memory lapses are frustratingly frequent.
Living with these symptoms is physically draining and often mentally exhausting, forcing those with POTS to adapt continuously and manage their symptoms on a day-to-day basis.
The Overlap Between POTS and ADHD Symptoms
Interestingly, POTS shares some overlapping symptoms with Attention Deficit Hyperactivity Disorder (ADHD), which can make the two conditions challenging to differentiate. People with ADHD may experience symptoms that hint at dysautonomia, such as:
Dizziness or lightheadedness, especially when standing up quickly
Rapid or irregular heartbeat
Extreme fatigue or depleted energy
Temperature regulation issues
Gastrointestinal problems
Excessive or insufficient sweating
If you have ADHD and experience these symptoms, it doesn’t necessarily mean you have POTS, but it may be worth discussing with your healthcare provider. Sometimes, the similarity in symptoms can mask an underlying condition like POTS, making a thorough medical evaluation important.
Diagnosing and Managing POTS
Getting a POTS diagnosis often requires persistence, as many patients go years without realizing their symptoms stem from an autonomic disorder. A tilt table test, which tracks heart rate and blood pressure as you move from lying down to standing, is commonly used for diagnosis.
Once diagnosed, managing POTS often combines lifestyle adjustments, medications, and physical therapies:
Hydration and Salt: Increasing salt and fluid intake helps stabilize blood pressure.
Compression Garments: Compression stockings or abdominal binders help reduce blood pooling in the legs.
Medication: Beta-blockers and other medications may help regulate heart rate and blood pressure.
Diet Adjustments: Eating smaller, more frequent meals and making certain dietary modifications can ease gastrointestinal issues. For example: a low-histamine diet and increased intake of electrolytes can help regulate blood pressure.
Pacing Activities: Breaking down tasks into smaller, manageable chunks can help prevent symptom flares.
Positional Changes: Making slow, gradual changes in position (like sitting up slowly before standing) can help minimize symptoms.
Exercise and Physical Therapy: Gentle, mindful movement practices can activate the parasympathetic nervous system, helping to improve circulation, reduce stress, and manage pain. At ParaMotion, we design exercises specifically for those with connective tissue disorders like EDS, HSD, and POTS, helping you find a sense of control and comfort in your body.
Managing POTS is often a dynamic process requiring flexibility and regular adjustments to suit changing symptoms.
Building Understanding and Support
Living with POTS can feel isolating. With symptoms like “brain fog” and extreme fatigue, many people find it challenging to explain what they’re going through. Supportive communities, both online and in person, offer lifelines through understanding and practical advice. Connecting with others facing similar challenges provides much-needed encouragement and coping strategies.
Conclusion: Recognizing and Supporting the POTS Community
This POTS Awareness Day, let’s amplify awareness about the real impact of this condition. For those living with POTS, know you’re not alone—there are people working to understand and support you. Each day may bring new challenges, but with awareness, education, and support, we can make a meaningful difference.
If you want to learn more about POTS or suspect you might be experiencing symptoms, visit the Ehlers-DanlosSociety’s resources on POTS and dysautonomia for further guidance.
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