I've just had the results of my tests (holter, ecg, echocardiogram), all came back clear. My daily PVCs have been either under control or just not noticable for the most part with lifestyle changes (more exercise, less caffeine). But last night while resting (reading in bed) I had a sudden, painful PVC (may have been multiple) that jolted me up. I'm now back to spiralling worrying they'll kill me. I've read the painful ones just happen if the PVC hits at a bad time before the next beat, and depending on how much blood the heart has in it at the time. I'm just so scared that I'm a sitting duck until one day it stops/turns into VT. It's a relief to find that there's no heart disease but I do worry about what will happen when it inevitably develops (runs in the family). I'm feeling completely deflated like it's impossible to get on track with these things for long and wishing I could have caffeine without worry. My burden is extremely low <1 but when they do hit they're often painful, multiple in a row and terrifying.
Painful PVCs: I've just had the results... - British Heart Fou...
Painful PVCs
Hi,
PVCs are a real nuisance, I know exactly where you are coming from.
I have PAF treated with Flecainide (daily) and PVCs are usually around to some degree. Some weeks I don’t notice or detect them, other weeks they are more prevalent. They are usually singular but occasionally bi or tri creep in. In the early days, they were investigated by my cardiologist but the burden was low ( not to my perception though); he wasn’t concerned and told me just to get on with life.
I’ve always been wary of ectopics, as prior to my treatment, they were usually the catalyst to an Afib episode. I feel the ectopics for me are now manageable most of the time and generally don’t affect my QOL. I don’t know if they will ever be solved but stress/anxiety are definitely catalysts and an instigator of ectopics. In the early days, I did suffer badly from ‘ectopic storms’, which drove me ‘mad’, robbing me of sleep/rest. Anxiety just enforced a negative feedback loop that descended into more ectopics. I turned to a course of cognitive behaviour therapy/mindfulness and for a period, an evening sedative. This worked for me, it broke the cycle and it all settled down.
I know what you mean re: the ‘painful’ ones. My introduction to Afib was a heart attack, the working theory being the undiagnosed and untreated arrhythmia caused it. Obviously, this is ‘chest pain’ which is a red flag where cardiac matters are concerned. An explanation I read said your heart is surrounded by a band of muscle and the forceful ectopics stretch it and it becomes sore. I have tried just to accept this, if I have period of sustained ectopics were my heart is a bit more irritable, I try to ignore it and work on getting them to stop; so far so good, I don’t think it’s hubris either.
Generally speaking, ectopics / PVCs are not harmful. It sounds like you’ve been thoroughly checked out and you made life style changes to help manage your condition. You kind of just have to terms with it and stop worrying. I know that sounds simplistic but it’s what I did, admittedly it took me a few years to get to point. I remember being sat up at 2 am, panicking about the banging in my chest, thinking the next one will stop my heart but I am still here.
Hit post too soon there.
The mind is very powerful and has great influence are physical responses. If you haven’t already explored the ‘mental health’ side of things then I’d always say, give it a try.
I always say this but I don’t quite know how CBT works but it does; my mind set is just different - I don’t get dragged down into unhelpful thought processes or behaviours when ectopics happen. If I notice a number of bumps before bed and in bed. I just don’t focus on them anymore - “ yeah, ok, not gonna kill you” - yawn, turnover, nighty-night.
Best
Thanks for your reply and sorry to hear you've had a tough time too.
What you say resonates a lot, pre ablation they were a sign of cardiac arrest risk for me especially episodes that felt like multiple (I don't know if they were back to back or bi/trigeminy). So the issue is I get the same fear but the Drs no longer show concern, it's very jarring.
Mental health is a huge factor, and I relate so much to them kicking of an anxiety spiral that sustains them. This time has thrown me off balance because I'd not had a bad run for a month or so and it kicked off out of nowhere while I felt relaxed. Weirdly sone of the most stressful times I've had I didn't get them, they seem to follow their own logic!
I get really scared of whether they're going to form NSVT or worse, especially as I get older. I see a lot on how they can be high risk with heart disease but when I ask my Dr what it'll mean 10 or so years down the line if I develop that he has no answers and seems confused about what and why I'm asking. The forceful ones terrify me because I wonder if it was a few PVCs felt as one forceful one. Same with the patterns of constant vibration, I always hope there's a few normal beats I'm just not feeling. The issue is they never happen during monitoring periods. The ones they've caught didn't cause me any symptoms so they say it's fine but they've not witnessed the ones that cause pain or feel chained together.
“Same with the patterns of constant vibration, I always hope there's a few normal beats I'm just not feeling. “ In the early days, I felt like this in midst of panic, however when it was monitored, it transpired my burden was less than 3%. Cardiologist just said it’s fine, don’t worry. That’s the mantra I’m trying to follow.
I’ve got to ‘grips’ with it and just accept them - some weeks they are irritating , then others not. My Afib has been kept in check so far with Flecainide; no sustained episodes for 4+ years, just ectopics. Life is fine, I regularly run, climb and cycle, as well as travel.
You mentioned ablation but I haven’t got that far yet.
Just a wee tip - use your Mantra, say it quietly in your head and out loud if you can. It's an excellent distraction technique from the CBT school of thought. Changing thought processes is difficult but it is achievable. There are many CBT self help exercises on line. It's good to know the health professionals aren't concerned - but now you have to train your brain into re thinking too.
Good luck.
I’ve never heard of a cardiac arrest risk with PVCs. I know what they’re like - I can have over 10,000 a day and I have a left bundle branch block to go with it. I see both a cardiologist and an EP and they’re not overly concerned with my ectopic beats, even though I have NSVT, and loads of triplets and couplets recorded many, many times too
I’ve even been told I can exercise and do as much as I can tolerate. While it’s true that some people with PVCs can develop VT, it’s so uncommon that’s unless you have a major electrical fault, there is no risk. I’ve noticed recently on Facebook there is a wave of people claiming they know someone who developed VT after have PVCs and it’s a growing internet myth - it’s why I’m not a fan of cardiac fb groups. It’s simply exaggerated and untrue and causes unnecessary anxiety.
I get that you’re worried but only you can control your fear. I’m lucky, I just don’t have the capacity to live in fear. I get concerned sometimes, but I’m not a fearful person and I believe my doctors when they say you will not suddenly die or arrest. Maybe it’s because I had to experience watching my mother slowly die from this disease, that I know how it will go. Suddenly death is often the domain of people with artery disease - I think myself lucky I don’t have this.
I was born with some congenital defects which meant originally my PVCs could bypass normal rhythm so a few in a row was considered risk for CA. They've fixed the defect, the issue is it's hard for me to remember the risk is no longer there, especially when they chain together.
Your reply is very reassuring though! It's NSVT I've been most worried about, as I can't tell if it's that, bigeminy or trigeminy I feel. Recorders haven't picked it up and I just assumed NSVT meant VT/CA risk.
Oh that's awful! Thankfully I'm not on Facebook, the only person I knew who had VT/a CA also had a congenital defect, an unknown an untreated one and was thankfully resuscitated! Now you say it, I've never heard of PVCs actually leading to VT, so this is reassuring!
I think I have a bit of trouble letting Drs reassurance ease anxiety because they originally put my issues down to anxiety so it was terrifying when it turned out to be such a major issue. It's hard not to worry they'll miss something again! Really sorry to hear about your mum, that must be difficult to know. Glad you manage to keep the worrying at bay though
If it makes you feel any better, my brother doesn’t just have non-sustained VT but VT. He has a pacemaker/defib but it doesn’t stop them. He’s been rushed to hospital several times and is still in the land of the living. We have a genetic condition. I guess my point is - don’t live in fear. Life is too good - get out and enjoy it. Our time will come when it does and worrying about it won’t stop it or slow it - in fact the opposite. Stress will do more damage!
hi there here is my story with PVCs, I’m 51 male and back in 2018 out of no where I started getting palpitations , I went to see my GP who basically fobbed me off telling me it was anxiety, they eventually got worse he sent me to see a cardiologist I had a 7 day alter monitor fitted which picked up multifocal PVC s and a run of NSVT the PVCs got that bad they ruined my life I couldn’t sleep or relax due to how frequent they was I tried various meds Bisoprolol / verapamil / Nebivalol but none worked. I had an ICD fitted in 2019 as per decision by my electrophysiologist. I was also trialed on Flecainide which thankfully got rid of 90% of the PVCs, I have a normal healthy heart by the way my ejection fraction is 65% left & 65 right. PVCs can turn into VT they also cause damage to the heart muscle over a long period of time, if the Flecainide didn’t work for me an ablation would of been the next step
Sorry to hear you had a tough time and glad you found medication that worked. Just a note to say, in case anyone else comes to this post anxious, it doesn't damage the heart over time unless you have a high burden. My burden is extremely low so it's not something I worry about. I do worry about the VT link though
What's a PVC ?
I've been living with mine now for around 20 years (yes, I'm still here). You absolutely have peaks and troughs and I have been having them quite bad recently, sometimes one every other beat which at times last about 5 to sometimes 10 minutes - then they subside (I'm having them now as I type this). The really bad episodes were caught on the 24hr monitor but, guess what? The cardiologist came back and said there is nothing sinister in them. Of course they are really debilitating at times, but it is about 'acceptance' and trusting what your specialist tells you. I'm quite a 'glass half empty' person, so I often look for things where I can then think that maybe the experts have missed something - DON'T. It's taken all these years to get my head around it but believe me, once you're in that 'acceptance' headspace things become so much easier to manage. Accept you have them. Accept that sometimes they may knock you for six , but also accept that you are fine and that nothing bad will happen. Wish you all the best. ***oh, and if you have a watch that can track your heartbeat (like an Apple Watch) don't get fixated on capturing your heart rate when you get them, it just adds to any anxiety you may be feeling and anxiety absolutely can make them worse **
Thank you, it's the part of being stuck in worrying something is missed that catches me out, I constantly worry they're causing NSVT that monitors aren't catching. My watch never catches anything, my cardiologist asked me to try record them that way but it's over too quick to catch, probably for the best because it stops me trying too often!
I have vt and it's not a death sentence. There are different kinds of vt too from benign to life threatening. You need to discuss it all with your cardiologist.
Just to revert back to the OP's question.
I have posted a few times about the "painful palpitations" and to date I thought I was the only one getting them.
I have runs of painful PACs that I used to worry about but I've gotten used to living with them.
Sometimes it can last for weeks then disappear for months. There is never a pattern.
I have often caught them on my Kardia especially when every second or third beat is a PAC. These are particularly painful and the pain is continuous until the PACs decrease to every 5 beats or so then the pain lasts only as long as the PAC.
What I noticed is that if the PAC occurs just before the T wave then it would be accompanied by the pain. In other words there is no T wave to reset the heart's electric charge.
I've not mentioned this to my doc yet though.
Really interesting! Coincides with what the York Cardiologist says about the distance from the last normal beat influencing pain.
Hope you don't mind me asking, was it easy to catch with Kardia? Dr recommended I use it, but I feel like by the time I'd set it up even 4-5 consecutive beats would've passed by then?
Mine tend to happen more on excursion or when my anxiety levels are high.
What I often do is have the Kardia handy then walk up and down the stairs a few times and then take the Kardia reading.
A 6 lead is not necessary to check the distance of the PVC Or PAC so you could take the reading whilst walking.
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