Navigating POTS Syndrome: Tips and Strategies for Those Newly Diagnosed

Life with POTS (Primary Orthostatic Tachycardia Syndrome) can be challenging, but with the right strategies and support, individuals can manage their symptoms and improve their quality of life. This guide offers valuable insights and advice for those who have just received a diagnosis of POTS.

Finding the Right Healthcare Partner

One of the first steps in managing POTS is finding a knowledgeable healthcare provider. POTS specialists are incredibly valuable, although they can be harder to come by. For instance, Crystal Hubert travels an hour each way to visit her POTS and Ehlers-Danlos Syndrome (EDS) specialists, and even takes advantage of telehealth services to make the process smoother. Regular check-ins and an understanding of your condition can significantly impact your overall well-being.

Hydration and Electrolyte Balance

Staying well-hydrated and maintaining a healthy intake of electrolytes is crucial for managing POTS. Crystal recommends drinking 2-3 liters of water daily and consuming 5-10 grams of sodium. Electrolyte solutions can also be quite beneficial. Crystal personally enjoys LiquidIV because it is both salty and sweet, making it easier to consume the necessary electrolytes.

Compression Therapy

Compression garments, such as sleeves, can be a great ally in managing POTS symptoms. Crystal wears them every day unless she plans to lounge on the couch. They are especially important if you are going to be up and active. Starting your day with compression sleeves can help improve blood flow and reduce the incidence of symptoms.

Medications and Management

Lifestyle changes and medications can work together to manage POTS symptoms. Crystal has found that a beta-blocker improved her tachycardia, making daily life more manageable. Other medications she takes include Mestinon and Midodrine. While these medications may not eliminate all symptoms, they can alleviate discomfort and make activities more tolerable. Consulting with your doctor to find the best combination of medications for your unique needs is essential.

Physical Activity and Exercise

Exercise is a key component in managing POTS. Crystal incorporates 30-minute walks during her workday when she has low energy in the morning or evening. She has heard positive feedback about the Levine Protocol, but has not tried it herself. Even short, regular exercise can help reduce fatigue and improve overall functioning. When energy levels are low, medication can aid in achieving the right level of energy for exercise.

Saying No and Setting Boundaries

Learning to say no, even to yourself, is essential for managing POTS. Crystal advises understanding that your body is not capable of performing tasks it once was, and that's okay. Planning tasks and moving them to another day on your calendar if needed is a practical approach. Self-compassion is critical; frequently, self-criticism only exacerbates symptoms. Crystal now offers therapy to help her manage her illness and regain control.

Support Systems and Community

A strong support system can be the difference between thriving and struggling. Crystal belongs to several support groups on Facebook, allowing her to ask questions, seek advice, and vent to others who understand her condition. If you have caring friends or family, don't hesitate to reach out. Social isolation can worsen emotional well-being and complicate the management of your condition.

In conclusion, managing POTS requires a multi-faceted approach involving medical care, lifestyle changes, and emotional support. With these strategies, you can navigate the challenges of POTS and find a path to a more comfortable and fulfilling life.

Wishing you strength, resilience, and support as you navigate POTS.