Living Life POTSitive

In the start of 2023, I was experiencing excruciating pains in my chest, racing heart, dizziness, and feeling so fatigued no matter how much sleep I got. For months I was at the cardiologist seeking answers, and getting different tests ran on me. Everything was coming back normal. EKG, Echocardiograms, Stress test, you name it.

Things got worse when I moved into my own place with my fiance and pup in July. We had friends over for fight night, and I had a long day at work and came home to prepare appetizers and get myself ready. I was catering to everyone and being the hostess with the mostess. I haven’t had a sip of liquor in forever and that night I did. After being on my feet for so long without sitting, I started to feel uneasy. My body felt heavy, my feet dead weight, my chest like it was going to explode, numbness and tingling on the left side of my arm, along with dizziness and my hearing faint. I went into my bedroom and called my fiance in and told him something was not right with me. He thought I was just overreacting or it could have been that I haven't drank in a while, but I was persistent looking deep into his eyes “no it’s my heart it feels like I am having a heart attack, call my sister”.

As I was going in and out of it, I remember my fiance Alex slapping my face in a gentle, but concerned way and yelling babe stay with me, wake up. I could not snap out of it for the life of me. My brother in law and sister came 8 mins up the street from where they live. They rushed me to the ER, as I do not remember anything moving forward. I just remember waking up in the hospital in the observation unit with an EEG machine wrapped around my head. Alex and my mom were on each side of me slouched over the bed looking hopeless and sleepless. I was in deep sleep for a day. My body was having twitches, but they were not seizures. All the testing ruled that out. The doctors at the hospital diagnosed me with non epileptic psychogenic seizures. In other words saying everything that happened to me was due to life stressors, which I know my body and I knew that was false. I had a heart rate of 160 bpm at rest that caused me to faint, black out, and experience all the other symptoms.

Upon discharge, Alex made appointments for me with the cardiologist. I had a heart monitor on for 2 weeks, which resulted in me being diagnosed with inappropriate sinus tachycardia which just means a fast heart rate at rest along with the symptoms I experienced. Then my cardiologist diagnosed me with POTS, but did not do any testing to confirm that it was. Alex made an appointment with a second opinion cardiologist who happens to be my mother-in-law's doctor too! He is phenomenal. We met, spoke about my concerns, and history. He recommended we do a tilt table test just to see if I do have POTS or not and to see what medication will help minimize my severe debilitating symptoms.

The day of the tilt table testing at the hospital came and my sister drove me per orders of the doctor to have a driver. The nurse asked me verification questions and had me sign a form stating that I know what the testing is all about. She inserted the IV in my arm and brought me to the room where my second opinion doctor was waiting for me. He put me on a table lying flat, and lifted the table upright, so I was basically standing how I normally would. I was strapped to the table for safety purposes in case I passed out. For 20 mins I was standing there and let me tell you my body hated those 20 mins. At that moment, I KNEW my body was allergic to gravity. It felt like torture the pain and all the symptoms I felt that night back in July and all the days I had flare ups were all coming back 10 times harder. I felt dizzy, hot, weak, faint ears, brain fog, blurry vision, I couldn’t focus or answer questions verbally. After the 20 mins were up he laid the table down and in that moment he looked at me with a sigh. He said “ I am sorry to have to tell you, you certainly have POTS. Now it's not the end of the world, but you are young and unfortunately I recommend putting you on Fludrocortisone." It is to help keep my blood volume levels equal and help me retain and keep all the sodium I am intake actually absorbed in my body.

After the testing it took me 2 days to feel better. I have been taking Fludrocortisone for a month now and I have seen improvement. When my symptoms flare up, the medicine helps with brain fog, migraines, and dizziness. When I get flare ups, they are hard to bear. It takes a toll on my body. Some days I can't get out of bed. I am out living life through the pain with my cane/chair. At work, I use my heating pad, minigun massager and foot elevator under my desk to help relieve some pain. Other days, the ones I consider my good days, I am up and in the gym, as well as cooking dinner after work.

I met with my cardiologist on Monday and am thrilled to discuss further treatment plans. I am currently learning to listen to my body when it is tired and that my new life with my POTS diagnosis is going to look different from my old life. I can’t be out all day like I used to. I have to elevate my feet throughout the day, drink electrolyte water, eat lots of salt in foods, wear compression socks, don’t take hot showers and use leg compression massager. All this is new to me, but also new to my spouse, family and friends. We are trying to learn together what is beneficial for me and how I can navigate through the chronic pain, while still living a happy life. I am grateful for my support system in all of this. This journey is not easy, but I am a fighter and I put my faith and trust in Jesus that with my proper care, medication, dedication and praise I will be healed! I pray we all find some peace and light through life living with POTS.