CoCo
Hey, my name is CoCo and I am 14 years old. I have been experiencing PoTS symptoms for over 3 years, but I was only diagnosed a year ago following a tonic clonic seizure.
Some of my symptoms consist of: fainting, pre-syncope, dizziness, difficulty thinking(brain fog), headaches, blurry vision, black spots in vision, tunnel vision, nausea, chest pain, difficulty breathing, shakiness, excessive sweating, light-headedness, skin discoloration, dizzy when standing, exercise intolerance, tiredness, bad sleep, weakness, body aches and pins and needles(tingling). These happen almost every day and are very debilitating.
Every day is a struggle, but I will fight through
When my health got worse in August 2023, I passed out 5-8 times a day, making me less able to function than most people. In December 2023, I began fludrocortisone, which has significantly slowed down the symptoms and helped a lot. Every day is a struggle, but I will fight through because I want people to know that I am more than my illness and that I am a person. It has been difficult for me, but it has taught me a lot.
Every day is different for me
I was in and out of the hospital so much from seizures that my neurologist diagnosed me within around 3 months, but I was still under investigation to rule out other things. As a result of my PoTS, my school life is severely impacted. I have a 1-1 and have to adapt my life and education every single day as a result. I have a low attendance rate of 77.6 due to being too ill to come in or getting ambulances constantly in school. My school in general is outstanding and helps as much as possible. It affects not just my school life, but also my everyday life. On some days, I am unable to walk, but on others I can run. Every day is different for me. I am fortunate to have supportive people around me, which has made my life easier. My diagnosis has become a big part of my life as well as a part of who I am, but I will not allow it to control me, I feel like I and others will get through these battles. Thank you for listening to my story.