My Dysautonomia Story
I’ve had problems with my heart and blood pressure for as long as I can remember. This is another one of my illnesses that has plagued me to some degree for my whole life. At the end of my senior year of high school in 2014 was when my symptoms started getting more prevalent. It started out with palpitations and dizziness after I stood still for a while, if I remained standing after I started getting palpitations I would start getting black spots in my vision and felt awful. I was always the kid that couldn’t stand for a long time and couldn’t participate in gym or sports because my body never cooperated.
This continued throughout my senior year and into my first year of college. I ended up missing a decent amount of classes but I did have my disability services paperwork filled out so that worked in my favor. I got altered test schedules, longer test times and so on. If you learn anything from this post it’s to fill out the paperwork for your school’s Disability Services Department, they are your friends! I went to our city’s community college so I didn’t move into any sort of dorm or anything, which looking back now was really for the best.
Hiking across campus in less than five minutes was also a problem when you’re lugging 30 pounds of books along with you. Trying to do that was like trying to run a marathon; I always tried to get to class on time because I absolutely hate being late to class. One time I pushed my body too hard and I passed out as I crossed the threshold to my classroom. After that incident my teachers started being more lenient about if I showed up late or not.
As time went on I switched from taking real life classes to online classes. It was safer and easier for me to do and I could do most things at my own pace and didn’t have to worry too much. By this time I had been dealing with my heart issues for about a year and my Neurologist referred me to a Cardiologist. Though this was after I half passed out in the shower and I was frankly scared to death. Then passing out or almost passing out became more prevalent if I wasn’t careful standing up. And it was so miserable being tachycardic all the time; it was hard for me to sleep.
It unfortunately took about three or so months for me to get in to be seen by the Cardiologist, but it was well worth the wait. My Cardiologist was absolutely wonderful and extremely nice and listened to all my complaints. By the end of my appointment he did think that my case was a bit odd but was willing to take me on anyway. I left there with a prescription for a Beta Blocker called Propranolol to try and keep my heart rate below 100, as well as an order for Holter Monitor testing.
For about a week the Propranolol didn’t make me feel so great I was tired and just didn’t feel well but my body adapted to it and now I can’t live without it. The Holter Monitor though, that just plain sucked. I got stared at a lot when I went to pick some things up for my mom and when I had dinner with one of my friends. And I couldn’t sleep well with that thing on so I hardly got any sleep for three days. When I went back to the hospital to have the Holter monitor removed, I told them I was there to get the octopus removed from my chest.
I’m not entirely sure what the Holter Monitor was supposed to show but all that came of it was proof that I was tachycardic most of the time despite the Propranolol. When I went to my follow up appointment my Cardiologist decided to up my Propranolol to twice a day, which did yield better results.
Then after we got all of that situated I got set up for a Tilt Table test, which was absolutely awful. I honestly consider that to be a form of torture and I never want to do that test every again. I didn’t pass out during the test but I really wish I had passed out because I just felt so miserable from all the medication that they gave me via IV before they started the test. So I suppose I don’t have the exact definition of PoTS, but that’s still my diagnosis either way.
Now I just continue to live my life, granted very carefully because I don’t want to do anything to agitate my symptoms. I’m just really careful, wear compression socks and drink enough Pedialyte for a small village. There are days where my symptoms do flare up and I feel awful and can’t do a whole lot. With any form of Dysautonomia, it’s just one day at a time, use your spoons wisely and eat a salty snack. There are times when I have to use a wheelchair and I’ve come to terms with the fact that, that’s okay. I’ve learned I can’t do everything all the time anymore.