Rebecca
Hello, my name is Rebecca and I am 32 from Merseyside. My PoTS symptoms appeared over 10 years ago, they would come and go but I was still able to maintain a pretty much normal life.
I then started to have funny turns while out shopping, resulting in me leaving shopping centres to go and sit outside, I also had to use the lift at my university because each time I climbed the stairs my heart would start pounding.
6 years ago I had my appendix removed and my symptoms became a lot more severe; this was the first time I heard myself be referred to as “tachy” by a doctor. I was continually going to my GP where they would carry out a 24 hr ECG, but each time the results would come back as “normal”.
Shortly after this, I also nearly fainted on the shop floor of my retail job and had several funny turns, my manager did not at all sympathise to the point where I ended up leaving. I then went on to work in the care sector and had several incidents of nearly fainting in clients’ houses.
It was towards the end of my second pregnancy and post birth, that my symptoms spiralled out of control to the extent where they couldn’t be ignored anymore. At seven months pregnant I went into hospital explaining my racing heart and breathlessness, they put it down to being pregnant and said it’s quite common for your heart to get a little faster in the third trimester!
They did follow up with a CT scan though, ruling out a clot on the lung and said if my heart didn’t calm down after I’d given birth then I may need beta blockers, it didn’t calm down! In fact it got even worse and I started to get a lot of ectopic/skipped beats too. I had a racing heart, breathlessness, palpitations, near faints when I was doing something as simple as making my baby a bottle.
At this point I had never even heard the word PoTS, it was only when I went to A&E and broke down crying saying I can’t even stand up to see to my new baby in her Moses basket, that the lady doctor took pity on me and asked the cardiologist to come and check me over. Within 5 minutes he told me what it was…. Dysautonomia/PoTS and also inappropriate sinus tachycardia, which, he explained, is a very debilitating condition! They also looked back on the results from my 24hr ECGs and said it wasn’t normal to be showing 150 bpm while not doing much activity. I then went on to get a tilt table test which confirmed diagnosis but also meant I had to take heart medication and stop breastfeeding immediately.
I also had to deal with the stigma of people wondering whether I had post-natal depression due to how anxious I was, but in reality my anxiety was due to having to deal with these dreadful symptoms while caring for a new born baby and being sleep deprived due to night feeds etc. Looking after a new born and coming to terms that my body that could not function properly anymore was severely challenging.
I now take one day at a time and am starting to come to terms with my new normal. I have some comfort in the knowledge I’m not alone and there is a community out there. I have found the platforms YouTube and TikTok helpful and I’m now fitted with a loop recorder to keep track of things. I’ve been unable to return to work but my company have said the door is open if I ever feel that I can go back. Socialising is hard because I feel I will let my friends down if I’m having a particularly bad day and have to cancel plans. I find I can’t plan ahead due to having to see how I’m feeling that particular morning as each day varies. It can be very hard and isolating but my main purpose is my children and they are what keeps me going. I have learnt to adapt/adjust my days out so there is not much walking involved and my main message is that I want people to know they are not alone!