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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AMcDonald
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Wow. Read the whole thing. Everything you mentioned sounds strikingly similar to what I’ve been through. My ectopics did go away for the most part though. I barely get any anymore. Course I still have other symptoms xD
So sorry to hear how you are struggling Abbie. Ectopics are awful as i know from my own experience and i can identify with you feeling them so strongly that it feels as though you are being knocked over by them.
Interesting that all your symptoms started after your HPV injection, have you ever had any explanation if that was a trigger or not. Our wider nervous system plays a role in all these events, well it does in my case anyway. (Nervous system, not nervousness as in suffering with our nerves).
I went through very similar issues and overall symptoms to you when i was a teenager many many years ago and my life seemed ruined at such an early age. I couldn't go anywhere without fear and feeling dreadfully ill. In those days it was put down to being some form of nervous breakdown, thanks a lot for that, thats a nice catch all for medics of the day not having a clue how to ascertain my core health issues.
Things eased over a period of around six years and i was able to resume my life and education and gain my degree. I was fine again until i hit sixty when all the symptoms came back out of the blue. Interestingly the cardiologist i was referred too asked what i had been like as a teenager, had i been slim, had i been hit with these symptoms out of the blue, had i been diagnosed as having nervous issues, yes i said, well they were wrong he said, i could have kissed him as my wider family had me down as a nervous wreck and i never quite got them to believe i wasn't a poor thing with bad nerves even though i had a successful life and career.
I later found that electrical heart issues reared their head in my fathers family as they aged and i was the fourth family member to have them rear, but in their case in later life.
I have a distant young relative on my mother's side of the family who is going through exactly the same as you. She is 18, currently seeing a cardiologist, endocrinologist and had the tests you have had. She is struggling badly. Like you she has had to put her life largely on hold. Originally on course for a place at Oxford Uni, she has had to postpone everything. POTS is in the mix for her too but has been told its probably only part of the bigger picture.
I am wondering if you contact the Arrhythmia Alliance or BHF to see if there are other young people you can network with to share and give each other mutual support. Perhaps your cardiologist knows of such a network if it exists. Its a lonely journey perhaps seeking out others your age may help you until you are through this bad time in your life. Sending you my best wishes. X
Thanks so much for your reply. It is really nice to hear from you and read your message, it's good to know there are other people out there!😌
For starters, I am sorry to hear about your story, I can really sympathise. I just can't believe how powerful these beats are sometimes, especially as I have quite a strong heart beat anyway, I can constantly feel my heart beating, it's so annoying!).
So, my family and I have put all my issues down to the HPV jab but when I've asked cardiologists what they think they cannot be certain whether that was the trigger or not. I've done quite a lot of research and there were lots of cases of POTS and other similar heart issues in the USA after the injection, so maybe there is a link. Yes, I totally agree about the nervous system playing a big role!
That must have been really hard for you, and so frustrating! I know what it's like for people to just think it's all a mental issue and believe that you've got really bad anxiety and in need of therapy to get over it - I had such a rough time in that first year trying to prove that my symptoms were real.
That's crazy you were fine again for all those years and it suddenly came back - must have been a real shock! Oh wow, I'm glad to hear there are some cardiologists out there that can understand and find out what is truly wrong. So what is your diagnosis now? Are you on any medication?
Ah bless, that sounds really similar to my situation 2 years ago! I was on course for law at Cambridge and that all went out the window. Yes, I have been told POTS is just a small part of the whole 'autonomic dysfunction' picture. Please let her know that she is welcome to contact me if she wants someone to talk to her own age, I have been so lonely the last 6 years not having anyone to relate to, but i reckon we can support each other - if you would like to send me a private message then I would be more than happy to pass on my details.
Yes I will definitely give that a go, thank you for the suggestion. I have my whole life ahead of me and I've finally realised that I need to reach out to other people to help me get though it with ectopics (for as long as they are going to last...)
Thanks again for sharing your story with me. Best wishes x
I have sent Ems mum a message re contact. Will let you know when i hear back.
My diagnosis is Afib, Svt, cardiac pauses, ectopics, automomic dysfuntion. Gastric issues are a big trigger for me. I take a beta blocker, flecainide as pill in the pocket when i need it. Awaiting an implantable loop recorder to ascertain cause of pauses hitherto not caught on heart monitors.
Stay strong you will get there even on days when you doubt things ever will. X
Ah bless, that sounds like a lot, sorry to hear that you are suffering. Good luck with everything, and thanks for the inspiring message. Stay strong yourself xx
Dear Amy, I was so sad to read your message as I too have had all the issues you mention. I’ve just turned 68 and still have bad days but things are easier than when I was a young woman when, like you, my monthly cycle resulted in many a night walking the living room floor to try and get my heart to beat normally! I’m finding magnesium seems to help so I suggest you persevere with that. Unfortunately, the effect on mental health of these wretched episodes does not seem to always be understood by medics. I have had a similar experience to meadfoot in that I feel I have been labelled as nervy and therefore a hypochondriac. Oh dear, this isn’t terribly helpful, but be assured, an awful lot of people have hearts that are over sensitive, as you will see from this forum. You are obviously aware of the triggers that irritate your heart so add some relaxation techniques, post here when you feel you are alone, make sure you rest when you need to, and best of luck with your studies.P.s. one go who was supportive and has, sadly for me, now retired, once told me:-
“If we took your heart out of you and gave it to someone else it would still b....r about! I could have hugged him. x
Aw sorry to hear you have been through a similar thing☹️ I can completely relate to you having walked around the house at night trying to get your heart to beat normally! Glad to hear I’m not the only one who has felt like they have been unfairly labelled as a nervous wreck, it’s a very frustrating position to be in. Thanks for the assurance, advice and support, I really appreciate it. Loved the quote xx
Hi, I take Taurine, magnesium glycinate and l-arginine 2-3 times a day .. I had a pvc burden of 13% now it’s down to 2.5% and they don’t bother me much anymore .. I have never taken any medication… I also have noticed a link to my monthly cycle.. I decently get more a few days before my period and a day or two with ovulation.. I’m 40 now so mine may be peri menopause 🥴
Thanks for your message! I've never heard of Taurine or l-arginine, that's interesting. Are these just individual supplements you bought online? Wow, that's a massive decrease then, glad to hear they are not bothering you too much. Good luck with the peri menopause, I hope the ecotpics remain relatively stable 😬x
Hi, can I ask specifically what doses of Taurine, l-arginine and magnesium glycinate you take daily? I’ve been trying it out for the last 10 days or so but haven’t noticed any improvement yet - not sure I’m taking the right amount and whether I should space them out specifically through the day? Thank you!
All within 30 mins of waking up on a empty stomach with 32oz of water
5-6 hours later I take
1000 mg Taurine
200 mg magnesium glycinate
5-6 hours later I take
1000 mg Taurine
500 mg L-arginine
200 mg magnesium glycinate
This is just what works for me there’s another person on this forum named catann ( who helped me sooo much with these supplements) And she takes the same supplement regimen however different doses that works for her.. some people benefit from adding potassium to their diet or taking additional potassium supplements..
That’s amazing, thanks so much for your detailed reply!! At the minute I’ve been taking 1000mg of Taurine and 1000mg of L-arginine in the morning after breakfast and then 200mg of Magnesium in the evening so I’ll definitely change that up.
Is it okay to take more than the recommended dose of these supplements then because on the packets it says for example don’t taken more than two capsules of magnesium glycinate a day (which is 200mg in total)? Also it says to take with food🤔
I’m definitely going to try that regime though but start off with smaller doses first. Thanks a lot for your help! X
Yeah some people take like 10 thousand of the taurine a day… and with magnesium 200 is a very low dose… I take all these with the guidance of a natural doctor. Who practices only natural medicine but is a actual MD. I take between 800 to 1000 of magnesium a day. The L-arginine I don’t take more than 1000 a day. The taurine works best on a empty stomach.. if I take it with food I have noticed I get very little results.
Ah wow okay, that’s good to know! I’ll look into getting some different magnesium glycinate then - what brand do you use? Do you have a picture of the bottle? Thank you, I’ll try taking it on an empty stomach from now on to see if that helps
So sorry to hear of what you went through and still going through. I'm in my 70s now and did not start to have any heart problems till I was going through menopause. I never even thought about my heart when I was younger and I was always thought heart problems were an "old person's) ailment. I'm now learning that age is not relevant. I never went on medications. I teach Tai Chi. Perhaps this form of exercise would help your anxiety by calming your system. Take care.
Thanks Tekla - sorry to hear you suffer with heart issues too. Yes that’s what I always thought until they started happening to me at 14🤦🏻♀️ That’s interesting, thank you for the advice, I’ve thought about trying yoga but I will look into doing this too. Best wishes x
Abbie, so sorry to hear how much your life has been adversely affected; sometimes I feel like the cardiologists don’t quite understand how terrifying it is. I’ve been on 2 x 100mg flecainide for nearly 10 years with no problem and variable but tolerable amounts of arrhythmia with the odd bad bout that makes me panic. If you get stabilised on flecainide or any other meds, don’t worry about long term effects; enjoy any respite that comes your way. You’re not alone but when we find ourselves in a place of fright or panic, or desperation that’s it crap, it is a lonely place. Gill
Thanks Gill. Yes I feel the exact same way. Just because the ectopics might not be damaging to my heart it’s not fair that they can just send me away and say it’s fine. They don’t know what it feels like and how scary it can be. Glad to hear the flecainide is going well for you. I’m on my second year of flecainide now but have more arrhythmia issues when I increase the dose for some reason! Thank you for the reassurance, I completely sympathise with you x
Abbie I am in tears reading your story. I am a 23 year old female and I had an ablation in July 2020 for SVT - prior to this I had never experienced (or knowingly never experienced) an ectopic heart beat. Little did I know my entire life would change after this ablation.
Since then, my life has revolves around ectopics. Even yesterday I almost had to leave work early because my heart was thumping all over the place. It is so debilitating having to worry about making plans based on whether we feel okay or not. Not only debilitating but embarrassing. My coworkers are all tired of it too…. Makes me extremely depressed. I can’t tell you how much I feel for you because I truly feel like I am in the same position. I don’t know what to do and I wish I had more helpful advice. Just know you are definitely not alone. I hope you find a solution ❤️
Dogluvr95 I can't tell you how much I appreciate you replying to my post, I haven't come across someone of a similar age to me with this issue ever! So sorry to hear about your situation, I can completely sympathise with you. I can't remember what it's like to not have ectopics heartbeats every day - I shouldn't have taken it for granted before...
I've been having a bad week with my ectopics too, even last night I was up until silly hours in the morning because my heart would not settle, it just races at 100bpm + and thumps all over the place, I can't seem to find anything to stop it. I feel very similar, I worry that the people around me get bored of me complaining about my heart and always cancelling plans last minute because I cannot leave my house.
Are you taking any medications or supplements at the minute and what doses?
Thanks for reaching out, I hope things begin to look brighter for you too. If you ever want to chat please send me a message because it's very lonely over here suffering with ectopics and you seem to be one of the only people who I can truly say is in the same position as me♥️
Ugh, I am so sorry to hear that. Truly. I know how that feels. I feel so bad for the people around me because I too almost always cancel plans because of my heart. But yes, I take metoprolol 25 mg once a day in the morning before I get up. I have to let it settle for about an hour before I get up or my heart rate will skyrocket. I also exercise (or try to) 5 times a week. I’m sure I could eat healthier and cut back on the sugar as I see that sugar is a trigger for some peoples ectopics, so I might try that. My life has totally flipped since my ablation and my quality of life has decreased.
I was never told the side effects of an ablation by my EP, maybe that’s my fault as I didn’t research it enough because I was scared I would talk myself out of it (and I would have had I done research). I don’t think I would’ve had the ablation knowing what I know now. Before this, I could exercise freely, didn’t take any medication, could drink alcohol, basically live life like a normal 20 year old. And all for something that only occurred once a year (SVT attacks). I’m just so mad at myself that I didn’t research this properly, and mad at my doctors for not telling me the risks and offering this as the first and final solution.
Anyways, it feels very validating talking to someone who understands how this feels. I will absolutely reach out and I hope you reach out as well if you ever want to chat. ❤️
Aw I do really feel for you. I just hope you’re lucky enough to have understanding friends and family who are happy to rearrange plans.
Ah okay, I do a similar thing with my medication, I wait in bed for a while in the mornings until it starts to take effect. I’ve heard that downing a pint of ice cold water and splashing your face with cold water is a good technique for calming down your heart rate so that might be a good thing to do in the mornings before you get up. Glad to hear you’re exercising frequently! For a while I was exercising around 5 times a week too but lately I just haven’t been able to due to a flare up of ectopics. I’m hoping I can get back to it soon. But yes cutting down on sugar and eating healthily is a good idea, although it’s so hard to around Christmas time! I find that after takeaways and eating chocolatey things do make the ectopics and racing heart a lot worse!
I completely relate, my quality of life has changed dramatically too, there’s so many things I am unable to do now. Before I was such so healthy and fit, was never ill and didn’t take any medication either. It’s such a shame you were not made aware of the side effects of the ablation but there’s no use at being mad at yourself, it’s not your fault. If only we could turn back time because I would never have had that vaccine that caused my heart issues. I have been back and forth considering an ablation but I am terrified of having one and my cardiologist reckons it could cause more harm than good so I don’t know if I’ll ever have it done.
In the meantime I would recommend taking some magnesium if you haven’t tried that already (that gave me some relief for a month or so) and I have heard that taking Taurine and L-Arginine together is good for ectopics so I have started adding those into my daily routine too to see if that makes any difference.
Perfect, and yes I will definitely reach out for a chat too, it’s very comforting ❤️
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