I’m hoping to feel less alone with this. I’m 32 years old, history of VSD as a child, and two weeks ago I was running 5k and weight lifting 6 times a week.
I started off with just one or two “episodes” of ectopics when working out (these are a few seconds long with many ectopic beats). These have increased to 40ish “episodes” a day, triggered by as little as brushing my hair or walking through my house. The episodes have also increased in length and do not stop unless I stop moving. I am breathless and faint with them, and can no longer live a normal life.
I don’t drink alcohol, consume caffeine or smoke. All bloods and an X-ray were fine. Awaiting cardiology referral, although I’ve ended up in A&E twice.
I am completely lost with what to do. I have gone from a fit and healthy woman to crawling around my house and unable to shower on my own.
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jenispaghetti
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I know exactly how you feel. I too was running regularly and then I was diagnosed with AF and it turned my world upside down. Ok here’s what I would say to you…..reading your story says to me that maybe this is someone who (like myself) has had a little scare and now your anxiety is through the roof? You say you can’t walk round your house without issue…..or brush your hair? But think about this….before your eptopics did you ever think about your heart whilst lifting or running? Did you give your heart a second thought when you got up to walk around your house? Did you think about your heart when you brushed your hair? Now everything you do you worry about doing before you’ve started doing them! Anxiety is a terrible thing and can play havoc with our hearts and minds. I was exactly the same, my advice would be take time out to think about other things positive in your life when you get the eptopics…try not to let them get into your head as they will only make it worse. I’m not a doctor and don’t pretend to know your medics problem but what I would say is if your doctor is happy your fine then try to tell yourself that over and over. It’s hard I know, been there and got the t-shirt. But I’m slowly overcoming my fears and my quality of life is becoming back to normal. So in short I would say try to relax more, stop worrying what might happen and concentrate on what is happening! And that’s you living your life to the full! Hope this helps you get some peace of mind 😊
You are right, I certainly notice it a lot more than I would have done before. The only issue I have is the fainting - is this something you've experienced? The reason I can't do much is because I am so horrifically breathless under any exertion and at risk of fainting (hence why I can no longer shower alone etc). There is no way I could take my daughters rock climbing or swimming again like this, which is my main concern, my quality of life
😔
Welcome to the boards. I wrote you a really, really long reply last night only to unexpectedly have my phone die just before I was done. With the caveat that I’m not remotely qualified in any medical capacity, basically what it amounted to was:
1. PVCs are extremely common. Current thinking is that almost everyone has them, but only a minority ever notice them.
2. For the vast majority of people, even when occurring regularly, and even though they can feel very unpleasant, they’re benign. The two exceptions to this are if you’re having runs of three or more PVCs in a row without a normal beat in between, or if they account for more than 10% of your total beats in a day. For the average person, that means having something like 8000+ PVCs a day.
3. If the first of point number 2 applied, I would hope (expect) your referral not to take long at all, reason being that sustained runs of PVCs that are three beats or more can become something more serious. I would also expect A&E to have informed you of that if it was happening, under what circumstances to seek help, and that they put you on medication in the interim, even if just a beta blocker. Have they started you on anything?
4. PVCs that worsen with movement or exercise are more uncommon, and a little bit more concerning overall in terms of the need for assessment, but that doesn’t make them necessarily dangerous or a sign of something to worry about, and your recent physical endeavours could potentially be the main culprit. Overtraining can absolutely cause significant, exercise related PVCs. This link may be useful: drjohnm.org/2013/06/benign-...
5. In the longer term, a holter monitor will give you the answers you need, and will almost certainly be the first thing any cardiologist will do. In England, most GPs can also usually arrange one without a referral to cardiology, so that may be worth a discussion, depending on how long the referral time is where you are. Given how much anxiety and upset it’s (understandably) causing you, I would also suggest considering paying for a private consult if your financial circumstances make that a possibility; many private consultants you see will be the same ones that work for the NHS, and if there’s anything major or ongoing, they’ll usually allow you to transfer to their NHS caseload once they’ve established what the situation is. In the shorter term, there are some steps you can take that, for some people, can help reduce the frequency of PVCs. Under the circumstances, it’s possible they may not be that helpful to you, and they don’t always help people, anyway, however, I always argue anyone with subjectively problematic ectopics has nothing at all to lose by trying to help themselves. It’s definitely not going to make the situation worse, that’s for sure.
Medically, the following things are known to be able to cause or increase the frequency of PVCs;
Caffeine, including in tea (normal teas and green/some herbal teas), soft drinks, some gym shakes, and medication. It can be in places we don’t always realise; as someone that has PVCs and PACs, as well as an arrhythmia triggered by them, I discovered the hard way that Irn Bru contains caffeine.
Nicotine, including nicotine replacement like patches
Alcohol
Dark chocolate, including used in milk chocolate flavoured puddings and desserts
Medications, including, but not limited to, asthma inhalers, some antihistamines, decongestants like pseudoephedrine found in cold and cough remedies, and meds containing adrenaline like the local anaesthetic lidocaine
Stress and anxiety, including the anxiety attached to experiencing PVCs. They can be quite a vicious cycle in that regard.
Insufficient sleep
Recreational substances, particularly but not exclusively stimulants
In addition, anecdotally, spicy foods are a frequent culprit for many people. I have major issues with ginger. Some people find eating generally can cause them due to stimulation of the vagus nerve. There is also an increasing body of evidence that foods high in tyramine can trigger PVCs and PACs, and arrhythmias that ectopics are known to trigger in turn (such as atrial fibrillation and supraventricular tachycardia). Most things that make them worse are those that trigger the release of adrenaline, and tyramine acts on the body in the same way. It’s naturally occurring and found in lots of foods including bananas, chocolate, yeast, strong and aged cheeses, processed meats like salami, anything fermented (including meat alternatives), and pickles, to name but a few. I always forget to mention it, as it’s not one that I have problems with, but we know it can be an issue. Whilst my situation is different, in that exercise doesn’t make my PVCs worse, I reduced my ectopics from several hundred a day even whilst taking medication to around a dozen by working out which of the above effected me and taking steps to avoid or lessen the impact of them alongside meds. Mine started being noticeable after a sudden and completely unexpected episode of atrial arrhythmia that ectopics trigger aged 26. I’m now 38.
It goes without saying, but for the time being, don’t even think about trying to do anything strenuous. I would also advocate reducing any day to day stress you can, where you can. Hand on heart, try some breathing based mindfulness/relaxation exercises. The more physically and emotionally stressed you are, the more your body is going to keep churning out adrenaline and cortisol, potentially adding to the problem. If you haven’t already, I would also advocate speaking to your GP and asking for some reassurance from them, particularly if the hospital haven’t put you on a beta blocker or anything. If they haven’t started you on one, I would also ask the GP to explain why not, and see if they think it would be worthwhile in the interim.
Thank you so much for such a detailed and in depth response!
I can confirm that all bloods and an xray have come back as negative for anything nasty, but due to the fainting issues they won't put me on any beta blockers as they said it could make that worse. So I am unmedicated.
Also, to confirm, I don't consume caffeine, alcohol, spicy food or smoke. I'm one of those people striving for health (which is massively ironic now)! So lifestyle wise, there really is nothing I can cut out. My diet consists of a carefully measured balance of protein/fats/carbs and really is fairly bland!
As these only happen when I move, I'm spending a lot of time sitting down doing not a lot. When I'm moving around (for example, having a bath and getting out, getting dry and dressed), the episodes are almost constant and are accompanied by increasing chest pain until I am at rest again.
I have now had 3 urgent referrals to cardiology, two hospital visits and have called their main office and left two voicemails - still no response, which is deeply frustrating. I think perhaps it's time to look in to private
As I said, it’s possible your very frequent exercise in an effort to be the healthiest you can has set this off. However, in the presence of fainting and chest pain, and with congenital cardiac history in the mix, it does need to be properly evaluated, and I would also agree that an urgent referral is appropriate, the difficulty being what would be considered an acceptable urgent timeframe at the moment. In the absence of some sort of estimate of the wait, I would definitely consider a private appointment if that’s an option open to you; I’m saving to see cardiology privately at the moment, and was quoted £250 for the initial appointment (which is about standard for any specialty), and then a further £750 for an ecg and 48 hour holter plus the analysis. A lot of money to many people, particularly at the moment, but as my mum says - and I’m being deliberately dramatic here - you can’t take it with you!
Failing going private, as frustrating and tiring as it can be, particularly when physically not well, I would keep trying the cardiology secretary. Between the two of us, my daughter and I have a lot of quite complex medical issues. My health was fine until after she was born (clearly her fault!👀😂), but she was a medical baptism by fire that over the years has taught me the value of being what I call a ‘polite nuisance’. Always very polite and friendly, but ‘oh, good morning, it’s Charlie, again. Don’t mean to be a pain, but following on from our conversation yesterday, just ringing to see if there’s any update on when I’m likely to be seen? I’ve fainted twice today’. Some may get frustrated with you, even if they’re not actually returning your calls, but to some extent, that’s what you want - from personal experience, human nature tends to dictate that as long as you’re being polite about it, they’ll either feel warm towards you and see what they can do to help, or you’ll be annoying them, so they’ll do what you’re asking just to get rid of you. Just keep leaving daily voicemails. The GP can also chase them without submitting another referral or anything, it’s not all down to you.
I love the NHS, it’s saved my life more than once, but they don’t always get it right. I would absolutely hope that A&E haven’t inappropriately sent you on your way, but would very strongly say don’t be afraid to present there again (or phone for an ambulance) if things get worse, or you feel particularly unwell with any of the bouts. The worst that can happen is that they find nothing else wrong in the moment; that doesn’t necessarily mean there isn’t anything going on that needs dealing with, and as it’s your heart, which is kind of vital, I would always, always argue better safe than sorry. It’s never worth taking a chance, and even if they ultimately send you on your way again, you’re still not wasting anyone’s time. With regards to the beta blockers, what’s your bp and heart rate doing? Beta blockers reduce blood pressure (although fairly modestly), and from experience, at larger doses can cause issues with hypotension in those with already good to low blood pressure, leading to a risk of possible faints. The same with lowering heart rate. I would definitely still be inclined to speak to your GP about beta blockers, though; the worst they can do is agree with A&E, but I’m not sure why they don’t feel even a really small dose of something isn’t worth a go on the basis of the fainting unless your bp is indeed the issue. However, as someone not even close to being a doctor, just a curious mind with apparently far too much time on his hands, there may be a very good, obvious reason for someone that knows what they’re talking about! 🤷♂️
Anyway. Good luck. If you’d like to keep us posted, I for one would be keen to hear how you’re getting on and what the ultimate outcome is.
Hi, as you have a history of VSD ( you didn’t mention if this had closed spontaneously or had been surgically closed) either way ideally if you are having these episodes you need referral to specialist adult congenital heart disease centre. If you go to the Somerville heart foundation website via Google they have a list of these specialist centres across the country.
Hopefully it’s just a blip but it needs checking out as sadly very few congenital heart defects are ever fully fixed and arrhythmias are common as we get older.
Ideally you need a monitor at least 24 hrs and also an echo scan of your heart.
I would assume that A&E gave done all relevant bloods to rule out anaemia and thyroid issues.
In meantime I wouldn’t be exercising other than walking until you have had full MOT by cardiologist
Apparently I stopped being scanned around 10 years old, and it healed on its own. I've no idea to what extent and I have been told that I am at risk of ventricular hypertrophy as a result of it. All bloods have come back negative, so aside from this, apparently I am the pillar of health?!
Even walking isn't really possible, as the episodes don't stop unless I stop what I'm doing, which means I'm stopping every minute or so. So it's just me and my sofa for the forseeable!
Hi all - just an update!So I’ve had an echo which was normal. The PVCs have become particularly bad today, I am at risk of fainting (and can barely breathe) by walking slowly a few feet. It has been suggested that I’ll need catheter ablation.
It’s been explained to be a nuisance electrical pathway causing it, and I’m just highly symptomatic it appears, so it needs zapping.
Ended up paying privately for the echo and holster, but it’s prevented a 5 week wait (and that’s on the urgent list)! Highly recommend Vista Health for anybody waiting on tests 😊
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