Living with Postural Orthostatic Tachycardia Syndrome (POTS) can be a challenging journey filled with uncertainty and frustration. From finding doctors that will properly diagnose you, identifying an effective treatment strategy, and managing symptoms, individuals with POTS often face numerous hurdles. My own experience with POTS led me on a path of discovery that ultimately resulted in the creation of POTSie—an app designed to simplify the management of POTS symptoms and help people get back to doing the things they enjoy in life.
The Beginning: My Struggle with POTS
It all began in the winter of 2020 when I started experiencing a myriad of unsettling symptoms associated with POTS. Heart palpitations, difficulty walking, extreme nausea upon standing up at night, elevated heart rate, chest pain, fatigue, and trembling hands became a daily battle. Concerned about these symptoms, I decided to visit a cardiologist. After a few tests and a bunch of waiting between appointments, my doctor diagnosed me with POTS.
Treatment Challenges and Lifestyle Adjustments
Upon diagnosis, my doctor prescribed medication and recommended various lifestyle adjustments, including following the CHOP (Children’s Hospital of Philadelphia) exercise protocol, increasing my salt intake to 3,000 mg daily, and drinking a minimum of 64 oz of water per day.
Despite seeing a doctor, dealing with my POTS remained an ongoing challenge. My medication only reduced my symptoms to a slightly bearable state. Overall, I still felt extremely terrible and still couldn’t do 85% of the things I wanted to do.
Frustration with Traditional Management Methods
My doctor said it could take up to 5 months before I began to feel the benefits of following the CHOP exercise protocol. I was annoyed. I was never a gym or exercise person, but if there was a chance it would make me feel better, I was willing to try it. I resolved myself to try it for the full 5 months, even if I didn’t see any immediate progress.
However, following the CHOP exercise protocol became tedious. I didn’t mind going to the gym, but I hated the repetitive process of downloading the same PDF every day and scrolling through it to figure out what I had to do at the gym. Additionally, I was terrible at tracking my water intake. I kept forgetting how many glasses I had drunk and found existing water tracking apps cluttered with info. I just wanted something simple.
The Birth of POTSie: A Personal Solution
After three months of increased exercise, water, and salt, I began to feel slightly better. By month five, I could see significant improvements and felt like I was returning to my old life. Despite the progress made, I continued to follow the CHOP exercise protocol and keep up my fluid and salt intakes. However, my frustration with tracking my daily routine continued.
Disappointed by the lack of dedicated tools for POTS management, I decided to take matters into my own hands. This led to the creation of POTSie—an app designed to streamline the management of POTS by allowing users to track water intake, sodium consumption, and the CHOP exercise protocol—all in one convenient place.
The Benefits of POTSie
POTSie quickly became an indispensable tool in my journey, especially during travel, where maintaining hydration and salt intake can be particularly challenging. By logging my activities and symptoms in one place, the app provided valuable insights into how my lifestyle choices impacted my POTS symptoms, empowering me to take control of my health. It became quickly apparent to me that if I skipped exercising for a while, then my POTS symptoms would come back in full force. Additionally, by logging my water, I could easily see that my water consumption decreased significantly after 2pm. So, I would remind myself to drink extra water during that period to hit my goal of 64 oz a day.
Conclusion: Empowering POTS Patients
For many, POTS is a lifelong condition, but managing it should not be frustrating. POTSie aims to keep everything you need for your POTS in one place and reduce the time you spend managing our POTS. That way, we can all get back to living our best lives.