Hi, my name is Abbie McDonald, and I am currently 20 years old. I have had heart issues, specifically ectopics, for over 6 years now. My story is quite long but I will do my best to summarise it all.
It all started after my HPV vaccine at school in Year 10. Following the jab, I came down with cold symptoms and a persistent cough. I went to see the GP soon after, who noticed I had a very high heart rate of approx.150bpm. I was told to remain in the waiting room for half an hour with a monitor on to see if it would settle, however it didn’t. The GP told my mum to drive me straight down to A&E, where I stayed for over 12 hours! I had bloods, chest x-ray, ecg and an echocardiogram which were all normal and nobody could explain my tachycardia. Eventually I was blue-lighted in an ambulance to a London hospital, where I was admitted for 5 days with suspected myocarditis and had more of the same tests done by cardiologists, which again confirmed a structurally normal heart. It was there where I first noticed the ectopic beats and I could see them on the heart monitor I was hooked up to, although they happened infrequently. In the end I was told to go home as they couldn’t find anything wrong.
However, my condition seemed to persist. My heart rate was constantly in the hundreds and even just sitting/standing up or going up stairs would raise it to at least 160 bpm. Over time, the ectopic beats seemed to increase, and I wasn’t able to carry on living my normal life. I began to suffer with nervousness, anxiety and tiredness. I was terrified of going anywhere or being left alone, going to school was a struggle, and I was absent from my classes a lot. Lots of people dismissed the heart issues I said I was experiencing and told me there was nothing wrong with me, it was all in my head. I was forced to go to CBT, which did no good.
But thank god for private health insurance! I began by arranging to see a top professor in the field at the Evalina Hospital in London, Professor Eric Rosenthal. He diagnosed me with Inappropriate Sinus Tachycardia and prescribed me Ivabradine, even though it was not licensed for children in the UK. I went back and forth to see him over the next few years and had many scans and fitness tests done. It was tough getting used to the ivabradine. I started off with a small dose and I noticed minimal change in my heart rate. He then advised me to increase my dose and that’s when the ectopic beats really began to emerge. I felt terrible on the higher dose of Ivabradine and suffered really badly with thumping ectopics in my chest, almost lifting me off my seat, it was one of the scariest times of my life. I came off the Ivabradine soon after that and eventually my resting heart rate seemed to finally lower, although nowhere near to my normal heart rate before all this began (60 bpm) and I still experience episodes of tachycardia whenever doing small daily activities like getting ready in the morning, household chores, and simply walking to another school class. Previously I was a very active individual, attending as many after school sporting activities as possible and playing for three netball teams, one of which was a national squad. Ever since that vaccine, I have never been able to do what I love again, my fitness has completely deteriorated and there’s no way I can run around a netball court again with my sensitive heart. Luckily, I still have my piano, but even as a restaurant pianist, it is sometimes difficult to keep composure when I play if I am having a bad day and I find myself just putting on a smile trying not letting my discomfort show.
As the months went on, I began to notice a pattern with my ectopic beats - it coincided with my menstrual cycle. Every month my symptoms would be particularly bad before my period and during. It was around this time I was choosing where to go to university, and this debilitating condition drove me to choose a London Uni so that I could stay at home. During my A-level exam period I also had a bad episode of ectopics and had to go to A&E, causing myself to miss an important exam. After seeing another cardiologist, Dr Boon Lim, for a tilt-table test (which was inconclusive for POTS) and a stress test, he recommended I start taking the pill (cerazette) as well as increasing my salt content and wearing compression stockings to improve my light-headedness. The pill worked amazingly for about 6 months, my ectopics seemed to be more under control and were only minimally impacting my day-to-day life. However, my body seemed to get used to it in the end and the ectopics came back. Things just didn’t seem to be looking brighter anymore.
Every few months after that my ectopics seemed to become more frequent and more powerful, sometimes feeling different to previous ectopics. I finally researched a cardiologist with expertise in ectopic heart beats, Dr Ahsan. He has been fantastic over the last few years. He initially sent me off for a cardiac MRI and I have had many 48hr ecg monitors and 7–14-day zio patches, as well as 24 hr blood pressure monitors. The MRI confirmed no scar tissue or evidence of myocarditis and the only thing that was observed was a slightly enlarged right atrium. In terms of my blood pressure, it seemed to be slightly on the low side, which explained the dizzy spells that I started experiencing. The heart monitors managed to capture the ectopic beats that I was experiencing, notably supra ventricular ectopics, although I also get atrial ectopics too. Dr Ahsan told me I had autonomic dysfunction. He started me off on verapamil and although this helped calm my heart rate, it did nothing for the ectopics. So, after a few months I was moved onto flecainide, initially 2 x 50mg a day, and then moving to 3 x 50mg a day, which I am still taking now. He has not tried me on beta blockers because I suffer quite badly with Reynaud’s phenomena – family and friends tell me that I am thermally unstable because I will be too hot one minute and then freezing cold the next! I should probably also mention that I suffer with hyperhidrosis in my hands, moderate facial acne (I have been on lymecycline and use duac cream), and postnasal drip (treated with Avamys nasal spray).
The flecainide was amazing in controlling my symptoms to begin with for the first few months, however the effect wore off and my ectopics came back just as bad. I tried increasing the flecainide dose, although the ectopics went crazy, so I went back to 50mg three times a day. I have good days and bad days… good weeks and bad weeks, but life still goes on. Next was a referral to an endocrinologist to analyse my hormones. All the bloods came back normal, except that I had a low neutrophil count – so not very helpful. Since I suddenly began having issues with the pill (cerazette) the endocrinologist told me to try a new one – Qlaira. I was on this for 2 months only because I had the most horrible heart episodes when taking the last few pills of the pack. The second episode was the worst, and my heart was beating irregularly for about 45 minutes. I was absolutely terrified and in tears – I had never felt anything like it. It felt like the blood was skipping through parts of my heart or even leaking, I don’t know how to describe it. I was getting such powerful thumping episodes as well which almost lifted me off the ground, my heart had no consistent rhythm to it at all. Nobody has been able to explain to me what this was, and it has never been caught on an ecg. All my cardiologist said when I spoke to him about it was that it was probably just some ectopic beats all in a row and it was fine, just take an extra dose of flecainide. But it didn’t feel fine, I don’t know how I managed to get through the episode without calling 999.
Anyways, I haven’t had another one of those episodes since stopping the pill completely. However, in the meantime, I have been watching Dr Sanjay Gupta’s YouTube videos and found that magnesium supplements have proven to be effective in cases like mine, so I have been taking Magnesium Glycinate tablets, which again really helped the ectopics for a short timeframe but then seemed to have no effect at all after a month or so. I have also recently been taking Vitamin D supplements and B12 supplements because my levels are not that high (my mum suffers with B12 deficiency).
Then came along the Covid vaccine! I have been fortunate enough to stay away from the virus so far, however after my second AstraZeneca vaccine in June 2021 I got pericarditis. About 6-8 weeks after the jab, I began getting intense chest pain episodes every day and my tachycardia and ectopics were exacerbated. I took Naproxen for a few weeks which helped the pain, but even now I am still getting some episodes of chest discomfort. At the same time as the chest pain, I started experiencing lots of numbness and pins and needles in my hands. Every day since July I have woken up multiple times in the night with complete numbness in my hands, sometimes my legs and feet too, and I have to spend the first few minutes of every morning massaging the feeling back into my hands. More recently I have also been getting sudden intense stabbing pains in the underside of my foot, which has been very strange. I just haven’t been quite right since the vaccine, and I am contemplating whether or not to get my booster.
Since my ectopics have had another flare up, Dr Ahsan is adding in verapamil with my current dosage of flecainide so I will see if that helps at all. We had a long discussion recently about the ablation procedure, but he is reluctant to perform one because my ectopic burden is not high enough – < 1% – which is absolutely mad because these ectopics almost rule my life and they give me so much hassle on a daily basis. I know that 1% doesn’t sound very high but I am so sensitised to my heart that I can feel every single one and they make me feel really uncomfortable and stop me in my tracks! I can’t begin to tell you how many sleepless nights I have had, or how many times I have had to sit upright so that I can fall asleep – I have never been able to lie on my left side because it makes the ectopics worse. Even bending over to put my socks on in the mornings causes them. I can say for sure that emotions don’t help too – laughing and talking can make them worse, as well as adrenaline – looks like I’ll never be doing anything exhilarating like theme park rides again! Nerves is another thing that definitely cause them but as a student I have had to do lots of exams, presentations, law firm applications, and interviews – it has been so hard to get through it all with my condition... To most people, I am a normal healthy young woman, but they have no idea because I usually keep my issues to myself.
I am always told to make sure I am drinking plenty, having small meals, and exercising as much as possible, which I do, but there are still days where I am house bound because the ectopics are really bad. It makes it really difficult to plan anything because I don’t know how I am going to feel. I have been told that I shouldn’t be planning my life around them or letting them control my life, but in reality, it does, and there’s not a lot I can do about it. I eat healthily, I am slim, I drink water only, eliminate caffeine from my diet and never drink alcohol. But this doesn’t seem to have any impact at all.
I hope I can find a specialist who can provide me a reason why this is happening to me and suggest any other course of action that might be available. I would also be grateful to hear from others with a similar issue who understand what I am going through and provide me with any help on how to live my life with ectopics because they are not going away or getting any better. Am I just supposed to accept that this will be the case for the rest of my life now?
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