This is a post that I’ve been wanting to write for a while – actually since I was diagnosed – but there’s always been something that’s stopped me (until now, obviously). The major worry that was on my mind was that this would come across in the wrong way, like more of a sob story rather than something to spread awareness which is my intention.
But ultimately this is something I want to share because this is quite a big part of my life, and I want my blog to be as true to me as possible. I also did a poll on Twitter to see if any of you would be interested and got a lot of positive feedback, which was so awesome! So here it is, my experience with my heart condition.
So I have a narrow complex tachycardia – simply put SVT, or Supraventricular Tachycardia – which is a heart condition that I was born with. I have a fairly fast resting heart rate, and the electrical system of my heart isn’t quite right meaning that I get heart palpitations every so often that take my heart rate up to around 200BPM.
It’s hard to describe what this feels like to a person who’s never had a palpitation, but it basically feels like my heart is going to beat out of my chest, I can feel my pulse throbbing in my neck (a lot of the time you can see my veins pulsing too), I can’t catch my breath and my muscles go weak – so all-in-all not a great experience.
It’s not a major condition though, I’m lucky that it’s not life-threatening in any way (it’s actually regarded as a nuisance), which is why it never really worried me that much. There are some more serious sides to it, however, which I’ll come to later.
Before I go too much into the details of it, let me talk about my history with it first. I was diagnosed with SVT in July 2017 when I was 19 years old, but I’ve had palpitations from around the age of 4.
I remember my first palpitation: I was in bed and about to go to sleep when suddenly my heart started beating incredibly fast. My initial thought was that I was having a heart attack (as a kid I didn’t really know better), but my parents managed to calm me down and it quickly went away.
I don’t really remember how often I got palpitations after that, but I know it was very rarely – it was almost like a one-off thing. Then, as I got into my early teen years, they started to occur more often but typically only with exercise and still very infrequently. I totally didn’t see it as a big deal back then though, I only had one or two a year and they would always go away very quickly.
It was when I got to 15 that they started happening a lot more often. I would do something as simple as stand up from sitting or pick something up and it would give me a palpitation, and these ones had become a lot stronger than most of the ones I’d had in the past. This was the first time that I started to feel like there might be something wrong, and since my family does have some history of heart problems I decided to get it checked out.
The first time I went to the doctor about it was when I was 16, and I was immediately told I was having minor panic attacks and it was nothing to worry about. I knew deep inside that this was wrong – especially since I had had them from such a young age – but I just went along with it, and since I was doing my GCSE’s at the time I figured that stress could possibly be the cause. I actually found out later that SVT is commonly misdiagnosed as panic attacks, which is one of the reasons why spreading awareness is so important.
Over the next couple of years it got a lot worse, I’d started getting palpitations monthly and they were being brought on by the smallest of movements, like just turning my head. At 18 I decided I needed to go the doctors again (this time a different doctor though, I wasn’t trusting the last one!), and finally I was taken seriously. I was booked in for an ECG and a blood test, and although my results came out as normal I was still referred to a consultant just to double check.
The issue with ECG’s is that they monitor your heart real time, so if you’re not having a palpitation then and there then of course it wouldn’t pick anything up! Luckily I was then put on a 24-hour monitor, and later a 7-day monitor – both of which picked up nothing. Those monitors suck too – the electrodes gave me rashes and were super sore and itchy.
After no luck with the heart monitors, I was booked in for an echocardiogram. This is basically like the scan you get when you’re pregnant but on your chest and torso area – and it actually kinda hurts because of how hard they have to press down to get a good scan of your heart. Oh and also, the gel isn’t that cold.
The echocardiogram showed no problems with my heart structurally – which is always nice to hear – but still left me with no answers about what was going on. Despite all of my results showing up as completely normal, my consultant completely trusted me with my concerns about my health and was as desperate as I was to know what was wrong. I’m so lucky to have such an amazing consultant, as a young person we often aren’t believed about heart problems unless they’re visible because younger people don’t typically get heart problems, so having him believe me was an awesome thing.
Not only did he believe me, he already guessed that I had SVT before even seeing any actual results – and he was totally right. I learnt from him that SVT often causes blackouts, which although I don’t have yet I would get in the future if I went untreated. For me, this was the first time that I felt like I actually had a serious condition. I know that sounds bizarre because any heart condition is fairly serious, but mine is so minor that it’s never really affected me.
However, when I learnt that, with the rate my heart beats at when having palpitations, I could have blackouts within the next 5 years, it was the first time that I felt a little worried. Since my palpitations seem to come whenever they please, that could mean I could get a palpitation whilst driving and blackout, which is insanely terrifying.
In my next meeting with my consultant, he gave me the option to have a 3-year heart monitor inserted into my chest, which would pick up any abnormalities as they occurred. This sounded like the best option for me because I knew within 3 years the monitor would pick up something, and it would finally let me see some results. I was informed it would leave a little scar (which it did, and you can see it in most of my photos on Instagram and stuff), but to me that was totally not a big deal – I just wanted to know what was wrong.
So in June 2017 I had my first ever surgery, and got my tiny little heart monitor inserted into my chest. It was a very easy, practically pain-free experience – and they gave me tea and toast! It was a little bruised and tender the following couple of weeks and I can’t go near microwaves now, but all-in-all it was totally fine.
Ironically, I got a palpitation the next day which allowed me to get diagnosed the following month. Trust me to have a 24-hour and 7-day monitor and have no palpitations but instantly get one as soon as my 3-year one has been fitted.
After getting diagnosed, I was given some pills to take only if the palpitation won’t stop (I so far haven’t had to take one). Since then I’ve had many consultations to get my monitor checked, all of which have shown multiple palpitations that are all around the same strength – so at least I’m consistent. I’ve also been referred to a new consultant who deals with the treatment side of heart conditions, and the hope is that I’ll be allowed an ablation – which is when they burn or freeze off the part of the heart which is causing the palpitations. I’m actually having that consultation tomorrow, so I’ll keep you guys posted!
I’m really hoping to get an ablation – it’s quite scary to see how much my condition has gotten worse as I’ve gotten older. I actually get chest pains now if I walk too fast for too long, and most cardio gives me palpitations. I can also feel and hear my heartbeat most of the time when I’m lying down, and often I can see the movement of my heart beating under my clothes. I also can’t take hot baths any more – extreme heat makes my heart race – and drinking coffee before I’ve eaten food makes me incredibly shaky. I also get shaky if I’ve gone too long without eating. Although this is only a minor condition, it’s definitely affected my way of life.
The main reason I wanted to write this post is to spread awareness. Heart conditions aren’t often seen in young people (I’m constantly being told by nurses and other heart patients that I’m the youngest person they’ve seen in the heart clinic for a while), so I just wanted to share my story in the hopes that it might make others become more knowledgable on the subject.
Although SVT is not a life-threatening condition, it can be quite scary, especially if you’re having blackouts. This is a condition that is misdiagnosed so easily, and even though it’s something that people are born with, it often doesn’t come about until they’re in their late 20’s-30’s, at which point blackouts would become a lot more likely.
If you have heart palpitations that sound similar to mine but have never been to the doctor about them then I’d definitely recommend that you do, it’s always better to be safe than sorry – especially when it comes to your health.
I also want to give a huge thank you to the NHS, because without them I may not have gotten the diagnosis or treatment that I needed.
If you have any stories you’d like to share about your, or maybe a family member’s, experiences with heart conditions then I would love to hear them.
Thank you for taking the time to read this, I know it was a long one.