Welcome to the Bendy Club blog! This week, we’re diving into Postural Orthostatic Tachycardia Syndrome (POTS)—a condition that affects many with hypermobility spectrum disorder (HSD) and Ehlers-Danlos syndrome (EDS). Understanding POTS and learning practical strategies for managing it can significantly improve your quality of life.
What Is POTS?
Postural Orthostatic Tachycardia Syndrome (POTS) is a condition characterized by an abnormal increase in heart rate that occurs after sitting up or standing. This increase in heart rate can be accompanied by a range of symptoms that can make daily activities challenging. POTS is a specific diagnosis and can be thought of as a form of Dysautonomia.
To be formally diagnosed with POTS it requires that your heart rate increase greater than or equal to 30 bpm within the first 10 minutes of standing in the absence of orthostatic hypotension. Generally this is done through a Tilt Table Test (TTT). Unfortunately, many patients who go through these tests are told no you don’t have POTS, but what they are not told is that their heart rate spiked 27 bpm (which is irregular for anyone going from a laying to standing position), so no they do have meet the specific definition of POTS but their autonomic nervous system is functioning abnormally i.e. Dysautonomia.
Recognizing Symptoms Early
Recognizing the symptoms of POTS early is crucial for effective management. Symptoms can include:
- Rapid heartbeat upon standing
- Lightheadedness or dizziness
- Fatigue
- Nausea
- Headaches
- Difficulty concentrating (often referred to as “brain fog”)
- Syncope or Pre-Syncope
Real-life Insight: Many patients with POTS have been misdiagnosed or dismissed because their symptoms are not well understood. One of my patients, Emily, experienced severe fatigue and dizziness for years before receiving a proper diagnosis. Early recognition and appropriate management can make a significant difference.
Action Steps for Managing POTS
Understanding POTS is the first step, but knowing how to manage it is equally important. Here are some actionable steps:
- Increase Hydration: Maintaining adequate hydration is KEY. POTS symptoms can be greatly improved by increasing your total intravascular volume i.e. having more fluid in your circulation. Generally, I recommend patients ensure 2-3L of water daily and increase if they are profusely sweating for 30 or more minutes. The easiest way to do this is to buy a 1L stainless steel water bottle online and drink 2-3 per day.
- Electrolyte Supplementation: Drinking water alone is not enough. In order to increase your total of blood volume you need to also use electrolytes. There are many different electrolyte supplements out there, but I generally recommend simple, cheap Sodium Chloride tablets. I generally start with 1-2g daily of Sodium Chloride tablets and go up from there if needed. Studies with POTS patients have tested doses up to 12g, but I have never personally used that high of a dose with a patient.
- Compression Garments: Using compression socks, spanks, and abdominal binders can help prevent blood from pooling in the lower extremities. This can be very helpful especially on days with increased symptoms.
- Physical Therapy: Engage in a tailored physical therapy program to help improve circulation, tolerance to orthostatic changes, and improve symptoms like dizziness and fatigue. Simple practices like having a routine before getting up from a prolonged time sitting or laying can be very effective in preventing severe symptoms. Check out this video for an example; https://youtu.be/xCxSVO5PRTA?si=yJJXZ5og15rE-Lfs
For those with very severe symptoms there are specific PT protocols like the Levine Protocol that have been shown to be effective for patients with POTS.
- Dietary Adjustments: Eating smaller, more frequent meals can help manage symptoms like nausea and dizziness. Avoiding large meals and high-carb foods can also be beneficial. For certain patients specific dietary protocols; low histamine diet, low FODMAP, gluten free, dairy free can be effective to improve symptoms
- Medication: Consult with your healthcare provider about medications that can help manage POTS symptoms. Medications such as beta-blockers or fludrocortisone may be prescribed.
Patient Story
One of my patients, Ann, struggled with severe dizziness, low blood pressure and fatigue for years. She had worked with a board certified Cardiologist and was put on fludrocortisone after a positive tilt table test (the gold standard test for POTS). Her blood pressure had increased but still experienced tachycardia with even minimal exertion. After speaking with her I asked her if she had even done the basics including consistently drinking 2-3L of water per day, taking salt tablets, or using compression socks. The answer was no one had ever recommended those things. This story highlights the importance of working with someone really knowledgeable about these conditions and starting with the basics and progressing to medications only when necessary.
Share Your Journey
We encourage you to share your experiences and connect with others on our social media platforms. By building a supportive community, we can help each other navigate the challenges of living with HSD and EDS.
Connect with Us
Follow us on social media for more tips, updates, and support:
Ready to Take the Next Step?
For those seeking personalized guidance, our 1-on-1 coaching program offers tailored support to address your specific needs. With expert advice and a comprehensive plan, you’ll gain the tools and confidence to manage POTS and live your best life. Learn more and sign up here.
Thank you for being part of the Bendy Club. Together, we can make a difference!
Warm regards,
The Hypermobile Solutions Team
References
Dysautonomia International. (n.d.). What is POTS? https://www.dysautonomiasupport.org/
Raj, S. R. (2013). Postural Tachycardia Syndrome (POTS). Circulation, 127(23), 2336-2342, https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.112.144501
Home. The Ehlers Danlos Society. https://www.ehlers-danlos.com/
What is HSD?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-hsd/
What is eds?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-eds/
Jovin, D., Atwal, P., Herman, K., Block, N., Maxwell, A. J., Mitakides, J., Maitland, A. M., Saperstein, D., Hamilton, M., Schofield, J., Koby, M., Klinge, P., McElroy, A., Bluestein, L., Chopra, P., Tishler, J., Pocinki, A. G., Varga, J., Dempsey, T., … Lane, K. (2020). Disjointed: Navigating the diagnosis and management of Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Hidden Stripes Publications, Inc.
Smith, C., & Wicks, D. (2017). Understanding Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder: (previously known as Ehlers-Danlos Syndrome Hypermobility Type & Joint Hypermobility Syndrome, respectively). Redcliff-House Publications.
Cox, C. (2022). Holding it all together when you’re Hypermobile. Journey2Joy
Disclaimer
This blog is for general informational purposes only and does not constitute the practice of medicine, nursing, or other professional health care services, including the giving of medical advice, and no provider/patient relationship is formed. The use of information on this blog or materials linked from this blog is at the user’s own risk. The content of this blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have and should seek the assistance of their health care professionals for any such conditions.