Laura
My medical problems began aged 20 during my second year of university (2014). A few years after being misdiagnosed, I was diagnosed with Hypermobile Ehlers-Danlos Syndrome. I learned a lot about this condition from medical papers, charity websites and from the EDS community online.
I learned that in the future I may end up with comorbid conditions that included PoTS. Cue 2019 when I started to get dizzy every single day and had to lie down to stop myself from fainting.
In December 2019, I went to my GP, she wasn’t happy about my symptoms and was concerned for me. I had already been to her for blood pressure issues, and we knew it was related somehow. After that, I was referred to Cardiology at Liverpool Heart and Chest Hospital and I was pretty sure I had PoTS at this point but needed the tests to prove it. It was difficult for me having only ever passed out one time when I was a little kid which I later learned was a Reflex Anoxic Seizure.
Recurrent chest pains
In April 2020 I was admitted to the hospital briefly due to feeling like someone was sitting on my chest along with having recurrent chest pains. They discovered I was extremely dehydrated, and I had 4 bags of saline through a drip over about 18 hours. This was a clue to me having PoTS due to losing liquid easily and not having enough salt in me. My heart rate was sky high, and it took those 18 hours to get it down to ‘just a bit high’ rather than dangerously high.
Through the pandemic I had a range of different tests including a lot of ECGs, monitoring my blood pressure and a tilt table test. I passed out during the tilt table. How I described it to my partner was that after a few minutes I felt a bit strange, but I couldn’t put my finger on what it was. Then I started to get sleepy and kept closing my eyes and I was told to try to stay awake. The last thing that I remember was slurring the words “everything is going black” as my tunnel vision closed in and then I fainted. I was diagnosed with both PoTS and Vasovagal Syncope because during my test I went bradycardic which was unusual for me. Since this has only been one episode, I don’t tend to refer to it, I just refer to having PoTS because I’m mostly Tachycardic. My Cardiologist also agrees based on my previous ECG results and only ever talks about treating my PoTS.
Ambulatory wheelchair user
Since around 2016 I’ve been an ambulatory wheelchair user and I’ve had to use my wheelchair when popping out to the shops or going on a ‘walk’ in a park because I cannot trust my body not to get dizzy or faint. I have passed out since my tilt table and the conclusion there was that I’m producing too much adrenaline. Recently I was in a shop and I almost passed out while in my wheelchair. I’ve never felt so unsafe before as I assumed that being sat down made me safe. Now even if I turn my head too quickly or too much at an angle (I’m hypermobile so I don’t know ‘normal’ limits) then I get pre-syncope.
Managing my symptoms
These days I’m managing my symptoms with compression socks, beta-blockers, extra salt, drinking way more water than I used to as well as having isotonic drinks, particularly when doing anything that is more likely to trigger my symptoms. Sometimes I use dissolvable salt tablets but they’re not the nicest thing to drink.
Other people’s perceptions
I think the most upsetting thing about having PoTS and other chronic illnesses is other people’s perceptions, especially those who are non-disabled. Through my journey, I’ve had comments about how having too much salt is really bad for you, despite being prescribed it by my Cardiologist. I’ve had people tell me I just need to go on longer walks, but this completely ignores my chronic pain and fatigue. I think if some people aren’t really open to listening then there is no point in me using my energy to explain things. I’m hoping I can apply for a medical alert dog next year to help notify me when I’m going to pass out which would really help me be more independent. I’m slowly managing to understand how I can help manage my PoTS (and other conditions), but it does take a while as you need to make some life changes to adapt. Hopefully, with people’s stories on the PoTS website, it will help raise awareness for our condition.