Living with Postural Orthostatic Tachycardia Syndrome (POTS) can be challenging, to say the least. From the dizziness and fatigue to the chronic pain, managing POTS requires a tailored approach. Recently, I had a significant consultation with my cardiologist that shed light on my condition and treatment options.

The Importance of Hydration

One of the first things my cardiologist pointed out was that I wasn’t aggressive enough with my hydration. I explained to him that I take liquid IV every other day. He recommended using liquid IV twice daily to help maintain my hydration levels. This was an eye-opener for me. I thought I had been doing a fairly good job of staying hydrated; this was good to know and rectify.

If the liquid IV does not begin to improve my condition significantly, there are other treatments to look at as far as hydration is concerned, including a permanent chest port and daily IVs. Obviously, this is not on my list of favorites, but if it is necessary, we will cross that bridge when we come to it.

Medical Tests on the Horizon

To further understand the extent of my condition and its impact on my heart (Including my Mitral Valve Prolapse), my cardiologist scheduled an echo and stress test for me this week. These tests will provide valuable insights into the functionality and condition of my heart, guiding future treatment decisions.

Medication Options and Personal Choices

During our discussion, my cardiologist presented several medication options that could potentially help manage my orthostatic intolerance and tachycardia. However, given my unique physiology and past experiences with medications having the opposite effect on me, I expressed my reluctance to go down the pharmaceutical route.

I could sense my cardiologist’s frustration, but I was relieved and grateful that he respected my decision. For me, it’s not about avoiding treatment but about making informed choices based on my personal experiences and observations.

A More Holistic Approach

You might wonder why I chose to forgo medications when they could potentially alleviate some of my symptoms, as did my cardiologist. My decision stems from watching family members experience significant side effects from medications throughout the years, leading them to much more serious conditions, which sometimes worsened their prior conditions. While I recognize that medication can be life-saving for many, I’ve lived with POTS my entire life and have found ways to manage it. Though some symptoms have worsened over the years, other symptoms have all but disappeared. For instance, I have not fainted in a couple of years now. Though the pre-syncope is just as bad as it always has been, and my orthostatic intolerance is worsening as I age, I am confident in continuing to increase my quality of life.

Now that I’m more aware of what triggers my symptoms and what I need to do to manage them, I feel confident in my ability to navigate life with POTS. I’ve learned the importance of staying hydrated, avoiding triggers, utilizing mobility aids, and listening to my body. While it’s not always easy, I believe that with dedication and awareness, I can manage my POTS effectively.

Moving Forward with Confidence & Advocating For Myself

While my cardiologist and I may have differing opinions on treatment options, I appreciate his expertise and guidance. He respects my choice, and as I told him, when I get older, I may decide to go the pharmaceutical route if my symptoms become more unmanageable.

As I move forward, I’m committed to staying informed, proactive, and open-minded. Whether it’s through hydration, lifestyle adjustments, or other holistic approaches, I’m confident that I can lead a fulfilling life while managing POTS.

In conclusion, managing POTS is a personal journey that requires understanding, patience, and resilience. While medical advice and treatments play a crucial role, it’s ultimately up to each individual to decide what’s best for them.