When you live with POTS, a form of dysautonomia, or dysfunction of the autonomic nervous system, every day is a battle. From getting out of bed, to brushing your teeth, to showering, to getting to work and school… these simple tasks that so many often take for granted are often impossible for those who live with this uncommonly heard of syndrome. This is my story on finding out that my own body was failing me so young, of not being listened to, and of finding my own answers.
I’m currently fifteen, my sixteenth birthday is coming up and I will be spending that day or the ones around it in one of my many doctors in the Kansas city children’s mercy, which has become the place I’m spending most of my young years. When I was growing up, for as long as I can recall, I had symptoms of what I know now was dysautonomia. I would go blind in the shower, I would get horrible chest pains, I would randomly forget everything I should know, I would even come close to fainting. As I started to approach my puberty years, my symptoms only got worse. I remember so vividly describing to my primary doctor my symptoms, and telling me tests were coming back normal and that I was making up these things, or that it was anxiety.
The first time I went into a full syncope episode I was in gym class in the fifth grade, I had been running in my gym class and the next thing I knew, my vision was fading and my chest was pounding, then I knew nothing. My world went black.
I woke up on the gym floor with the nurse over me, asking me what had happened. I had no answer for her expect I had simply fainted. My mother rushed me to the doctor again, and he told me I had some type of viral infection and fainting ‘just happens’. I was wrote off again. He denied my claims of chest pain, my legs swelling, the dizziness I had been having, and the horrible headaches that were just getting worse. This was one of the first milestones in the progression of my illnesses I can recall.
The next time I fainted about a year later, I told I was hypoglemic and to eat more. That did nothing. I was constantly craving salty food, I mean, I was putting salt in my cheerios! My mother would question me and tell me it was going to make me ill, but really it was the only thing that made me feel better.
Later in life, about seventh grade, I got a sepsis infection. I was deadly ill. My symptoms skyrocketed, and ER doctors weren’t sure what to do with me until we got my test results. They told me the fainting was caused by the stress from such an extreme infection in my body, and it would fade. After many weeks of rest and hospital trips, I recovered from the sepsis, and then came down with mumps. I was once again very ill, and they weren’t sure what to do with me at this point. They couldn’t understand why my immune system was so weak. After I recovered from mumps, my symptoms didn’t go away.They only kept getting worse, it seemed I knew the ceiling of my house better than the rest of it. I was sent to children’s mercy around this time to see a GI for my chronic colon issues, my GI diagnosed me with orthostatic hypotension, which kinda fit the mold. From there I went to neurology, and the doctor I saw there changed my life forever.
I will never forget the days I had spent before hand fainting, dead with fatigue, having horrible GI pain, horrendous body pain, chest pain, and high heart rates along with many other taxing symptoms. She had me do a version of the tilt table test, and I fainted during as my heart rate went from 68 to 145 within 3 minutes and didn’t come down until after I fainted. It was my body trying to protect itself. My doctor then ran into the room yelling she knew what was wrong, and it was like everything moved in slow motion. She told me I had postural orthostatic tachycardia syndrome. She took the time to explain to me what was wrong with my body, and how she thought she could help me. She sent me to cardiology, where they confirmed the diagnosis and I was sent to a POTS specialist who sent me to the most amazing physical therapist, but I kept getting worse. My physical therapist discovered I had extremely hypermobile joints, and I had every single symptom of Ehlers Danlos. I got in touch with my cardiology team and they sent me to genetics where it was confirmed I was on the severe side of the Ehlers Danlos type 3 spectrum. I was soon after put on heart medication to stabilize me, and to help my physical therapist with my treatments. It was like after years of being told I was crazy, I wasn’t really sick, of even being treated in psychiatric hospitals for anxiety so bad it was causing all of this- I was finally being listened to. I was being treated for my years of pain, dislocations, fainting, GI issues, neurological issues, and more. I was finally, FINALLY treated like someone whos sick, not insane. I was real, I was rare, and I was here.
While living with these things so young is scary, heartbreaking, and a battle every single day of my life, being ill has taught me so many life lessons I never would’ve had I not been ill. I’m wiser, ive found my career I want to pursue in the medical field, I know so much about the human body, and most of all, I’m courageous. I know I’m strong, even on my bad days. To any other woman, man, child, or adult going through this or any other chronic illness- I salute you. I applaud your strength because I know how awful this is. I’m so proud of you, because I know we all need to hear that more. If I could give you any advice, it would be to keep fighting. I know its a long haul, I know its hard, I know you’re tired, im not saying this is easy, but when you finally get answers, when you finally get listened to… its a feeling of bravery, of strength. Of knowing you were right, and the feeling of finally being listened after so long to is a feeling I cant describe.
We are strong. We are a force to be reckoned with. We are here to stay. Ours bodies are fragile, but our will power is not breakable. We are dysautonomia fighters.
I’m 46 now.. my first ‘meeting’ with POTS/Dysautonomia was when i was 23.. i lost 50 pounds, high heart rate, fatigue. pain.. no one knew what was going on. It took me 4 years to feel better. Its like i grew a bit out if it. It never was completely away, but i was able to study, sport..LIVE..
Then may 2008.(i was 35). i became unwell one morning and it never went away. It took 8 long, tough years to get diagnosed. I’ve been gone through hell in those years because doctors couldn’t find what was wrong & kept telling me it was stress/anxiety. Finally in 2016 i understood what was going on, cause during all those years mostly bedridden i skilled myself in medical literature. I found out about Dysautonomia and i instantly knew i had at least POTS. I found a professor in my country who did dysautonomia research and wrote him my story by mail. HE got me referred and within 15 minutes of being in Radboud UMC i got diagnosed with POTS.. a week later the diagnosis got confirmed through excessive autonomic nerve system testing. None of my former doctors , which i wrote later apologized for wanting me to be put into a mental institution because i kept visiting them for 8 years, ended on E.R’s, telling them something wasn’t right, it couldn’t be just stress/anxiety. I have/had lost many years of my life and due to the long time it took to get proper help i physically became much worse than would’ve been necessary. on top of this i have fibromyalgia/cfs. I’m 46 now, still trying to cope with my illness. I know there isn”t much research about men, my age and POTS. I’m very happy Dr. Gupta makes an effort to learn&educate more about dysautonomia/POTS. Keep the faith Samantha!!!