Hi there,
I’m Laura from Belfast and I’m 31. I’ve been having palpitations I think since I was about 18. They went undiagnosed for a long time, or misdiagnosed should I say as anxiety and stress. When I was 26 I was going through a quite stressful period, my mum was in the final stages of Huntington’s disease and with a 50/50 percent chance of inheriting the disease and having just bought a house and thinking of my future, meeting someone one day and having a family I decided to embark on the genetic testing process.
I was on the phone to the genetic counsellor and when I hung up I felt like there was a bird trying to escape from my chest and my vision was going black, I thought it was stress and tried to drive home but had to be rescued by a colleague. I was pretty sure I was having a heart attack.
When I reached the hospital, there was quite a panic and within a few hours I was diagnosed with right outflow tract ventricular tachycardia (RVOT). I was in for a few weeks and they concluded I have the benign version which is lower risk. They tried to ablate it 4 months later but could not find the place it was coming from in my heart. I’ve been managing (or trying to manage) my symptoms ever since with lifestyle changes.
Three years ago, I thankfully tested negative for Huntington’s, and I thought maybe the removal of that stress in my life would calm my heart down. My symptoms did reduce quite a bit in 2016 but have slowly crept back. I feel a lot of PVCs with intermittent bursts of tachycardia. I also get chest pain and feel dizzy. I can’t sleep on my left side. At the minute this is most days. I have tried all the tablets there are but they don’t stop it. It is really bothering me and not going away so I’m faced with another ablation. I am quite scared about that.
I’ve been reading some of the stories and am in awe of people living with far more serious conditions than mine!
I’m looking forward to chatting! It has taken me ages to find people to talk to about this. I have been told there is a Facebook page also??
Laura
Hi Laura,
Thank you for sharing it takes a lot to put your story down in black & white and put it out there. I am from Belfast also I joined around 7 months ago as I have been diagnosed with ARVC after collapsing whilst out running in June 2017. I’m down to around 50% useful function on the right side and am having multiple abnormal arrhythmia disturbances each day any of which could lead into cardiac arrest so an ICD is looming over the next few months. I was the same there is very little help or support in NI for younger people with heart conditions it’s grand if you are in the 70+ club lol.
There is an online form to join the facebook closed group page Kanika from CRY will keep you right she’s great.
Just shout if I can be of any help or meet for a chat as we are local to each other.
Jenny x