Paula, age 56, Oklahoma
I am a 56 year old female who has been diagnosed with PoTS after having Covid in 2020. I feel I’ve had some form of dysautonomia for years but it became unmanageable after having Covid.
A few months after “recovering” from Covid, I began experiencing concerning symptoms. After many trips to my primary physician, cardiologist, and pulmonologist, I had no answers and was told all my test results were “normal” - but my symptoms were not going away.
After waking up each morning, I would literally crawl to my couch to avoid passing out. I knew something was not right even if medical tests did not provide answers. I experience dizziness, brain fog, headaches, severe GI issues, shortness of breath, fatigue and syncope just to name a few daily symptoms. After googling my symptoms, and searching the internet for answers, I was able to secure an appointment with Dr. Suleman in February of 2021 at the Heart Beat Clinic in McKinney, Texas. After a tilt table test and several other autonomic tests, I was diagnosed with PoTS.
I immediately started all the PoTS suggestions (compression socks, increased salt intake, hydration, CHOP exercise protocol etc.) as well as taking midodrine as my doctor had prescribed. I was able to continue work with some Americans with Disability Act adaptions but never felt “pre-Covid” and had to learn to slow down my pace and rest when I needed it.
I have very understanding and compassionate coworkers who were always looking out for me and were able to take on some of my responsibilities.
I work as an executive director at a community college so my days are very long and include lots of travel. At a conference in October I had a debilitating cluster headache that included pain in my right eye with any eye movement. I also noticed a considerable amount of vision loss in the right eye.
Once home, I made an appointment with my optometrist who referred me to an ophthalmologist. Dr. Sherry (ophthalmologist) noticed damage to my optic nerve and feels I may have had an eye stroke due to lack of blood flow to the optic nerve.
I’ve been on Family Medical Leave Act since December due to the increased severity of my symptoms and decline in vision.
I have continued my search for answers to my symptoms and have recently discovered that some PoTS patients have reported improved symptoms after IV infusions. I’ve had an appointment with Dr. Marcus Smith, cardiologist in Oklahoma City, who is now specializing in PoTS. Dr. Smith feels I am a good candidate for albumin infusions due to the type of PoTS I have (hypovolemic PoTS). Dr. Smith talked to me over an hour in his office about the lack of awareness and understanding regarding PoTS and will be turning his practice into a PoTS clinic to ensure patients are heard and more research can be conducted.
I’m excited to try the infusions and will continue telling my story to help bring awareness to this debilitating condition.