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Navigating POTS

Jess, age 26, Colorado

For many years I struggled trying to find answers, trying to feel heard by medical professionals, and feeling overall defeated. I want to be a light for those that haven't gotten the answers they deserve yet, those who haven't felt seen, and those that keep fighting it alone. I want to raise awareness whenever I can because there is a lot misconception surrounding POTS and there is still a lot unknown about this illness even today.

I have had POTS since 2008 but it hasn't been an easy road growing up with it. I woke up one night at 10 years old with the room spinning and my heart pounding out of my chest and none of that was normal for me. So being unable to walk that night, my parents took me to the hospital which led doctors to many questions, testing, and further referrals to other medical offices in my state. Little did I know that night would change my life forever. Days turned into weeks, which turned into months, which turned into years with little answers. I kept a health log to keep track of what was going on to try and help doctors narrow it down to no avail. By 2010, I was referred to a neurologist who specialized in treating many Dysautonomia symptoms, which was the first step in the right direction. We met a few times and did more testing such as MRIs and EKGs. Eventually he realized he had seen these symptoms almost exactly before in another patient and all the tests we did pointed to POTS.

Having an official diagnosis felt bittersweet. It was gratifying to know what was going on after 2 years, but I also felt nervous as to what this meant in my life going forward. How will I navigate life now? Will this last forever? How do I keep it at bay? Etc. For a long time after my diagnosis I had a wheelchair for the days when the room wouldn't stop spinning, my vision was bad and might faint. After about a year I was given a cane to try to use more. Over time, I could identify my symptoms of when I would likely faint and I still use that cane to this day when I feel worse so it helps balance me.

Since then I have stayed in touch as much as I can with my doctor and we have a good system for the time being. We did try medications such as a beta blockers and Fludrocortisone to help keep my fluids and salt intake up but they ultimately did not help the way we intended overtime. So for the time being, I drink at least 4 glasses of water daily, and keep up my salt intake during the day. For a few years, I had little to no symptoms until the summer with the heat and my symptoms would ramp up again on me. Since around 2017 my symptoms have been consistent but vary day to day. Everyday I have symptoms that range from mild to severe depending on the day such as chest pains, heat intolerance, elevated heart rate, blurred vision from dizzy spells, and fainting spells. I do have bad days where I may be bed bound, some days I may hold onto walls or counters more as I move, and some days I may faint several times. This journey has not been easy to navigate but I know how strong I am and I have learned how to remain positive through support from friends and family.

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