I have finally had my call with cardiology today and I have now been discharged apparently I have been having lots of clusters of ectopic heartbeats. I’m sure he even said into quadruples. He did mention that a beta blocker could be useful but because I have a low heart rate at rest anyway this was disregarded. He also mentioned that I am too young for a pacemaker. Is that something that I should be watching out for the future or why would he mention a pacemaker for ectopics ?
Thank you to everyone on this group who has been very open with discussions around similar topics.
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Blondie12345
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hi Blondie first of all sorry your going through this I’m in a similar position as you I do take an anti arrhythmic tablet sotolol been on a small dose for many years originally for SVT but now experiencing lots of ectopics so uncomfortable and I feel my chest is tight and sometimes a stabbing pain been to A&E it was ruled out it was a. Cardiac event but I still feel unwell. Handed in a 24hr heart monitor last Thursday and waiting for an appointment for an echo my point is when I’m having the ectopics (all the time) but when they come in runs my HR drops so I’m beginning to think am I on the right tablet as sotolol is meant to slow down your HR - really don’t know what is the best thing tbh,if they offered ablation or a pacemaker I would say yes please as I’m completely fed up my life is on hold as it’s waiting for results - I don’t know about you but I worry what all these PVC’s are doing to my heart would welcome any input from our hearty friends out there hope yours is all resolved soon take care xx
thank you for the reply. I have been told they are totally harmless and we are not to worry. Its easier said than done when we are the ones feeling it our chests. Cardiology didn’t give much explanation about the ectopics at all so I have more questions but no idea who to ask now
Honestly totally relate to this - I tried to make an appointment at my surgery explaining I’m so tired with not sleeping the answer was ‘we are going to have to wait for your results before we can do anything ‘ which I get to a point but what happened to just being a GP and offering some advice it’s like we are stuck as I call it in no man’s land- hope you get some answers soon I will keep looking out for your feed to see how your doing sending a big hug 🤗 as this is just a horrible place we find ourself in hats off to people that can switch off to these pesky ectopics xx
Please look up Dr Sanjay Gupta from York Cardiology on Youtube. His channel is amazing and he is very thorough and speaks in depth about ectopic beats and palpitations.
Hi, 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 exercise normally, I am quite fit and healthy and run/cycle/climb regularly each week. Generally speaking with a raised HR, I don’t detect ectopics. However, sometimes I notice a ‘bang’ but and carry on as usual.
I have a beta blocker as part of a PIP (never used) and don’t take it regularly; it does drop HR, and mine is low anyway. Routinely my HR is 40 bpm in the evening. I don’t suffer any adverse affect , so it’s just normal to me - carry on! GP did say that with a low HR, the inter beat intervals are long enough for your heart to throw extra beats in; maybe it’s getting bored! 😀
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 did ask my cardiologist once, if he felt a pacemaker was a solution for me in the future, he said no.
Hi there AAJJTt again so sorry you’ve had all this with ectopics I have to say you sound like you’ve got this under control think I’m still at the freaking out stage - but if all else fails what I’ve got from your message is will try the CBT route if I find I dont get anywhere - I think my system as got used to my medication wondering if there is a build up in my body now! Maybe grasping at straws there- can I ask though did you feel uncomfortable with them I feel they consume all my thoughts I can’t seem to switch off - I kept wondering about some sedative (so I can get some sleep) but then I worried about HR dropping - rather than anything too drastic thought I would try Kalms but it seems these can give you palpitations 🙁 why is nothing straightforward- thank you for putting your message on here as I think the more info you have the better hope you stay well 😊xx
Thank you I will look into nytol will try anything to break the cycle I can sleep for about three hours wake up usually to go to the loo but instantly notice the ectopics then I can’t go back to sleep is it psychosomatic? I really don’t know think the problem is people are telling you this in some part is caused by anxiety but I’ve only become anxious as this has gone on and on thank you for the tip xx
I always say this but I don’t quite know how CBT works but my mind set is just different - I don’t get dragged down into unhelpful thought processes or behaviours when ectopics happen. In fact last night, I noticed 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, night-night. If you are troubled and haven’t already explored your mental health then I’d always say, give it a try. The mind is very powerful and has great influence are physical responses.
Thank you, think this is something I’m definitely going to look into regardless of what the diagnosis is as I think I’ve been here before back in 2021 so I’m seeing a pattern and really don’t want to be here again so your message has really helped me to focus thank you again 😊x
I can relate to what you are experiencing. A low dose sleeping tablet on prescription helps me a lot. About 6hours of sleep & as a result feel more relaxed the next day. I only take as needed. Maybe worth asking the advice of ur cardiologist or gp (?)
Thank you Gowers - I rang my surgery a week ago now to try to get an appointment to discuss this with the GP about not sleeping to be told by the receptionist nothing will happen until weve got your results back - tomorrow I’m going to ring to see if my heart monitor result is back it’s a week ago I handed it back it could be too soon yet but will give it a try, at least if that’s back they might be able to prescribe something for sleeping? - I’ve never received an appointment yet for an echo which has supposed to have been requested, but would love to get at least a couple of nights sleep on the bounce! I’ve forgotten what that’s like 🙁
Did you ever worry what the future is for ectopics? We are told not to worry and they are harmless but can they ever lead to other complications. It’s not very clear and wasn’t explained to me. Waited 12 months for a 5 minute phone call.
I’m worried that there isn’t an outcome for this problem but really hoping we all get sorted one way or another - I still think you should see if you can be re-referred to cardiology I feel your no further on which is fine if your asymptomatic I think I will go private if I don’t get anywhere or the wait is too long for a cardiology appointment xx
Ectopics are usually benign: I’ve never been told or read anything different. The pauses, although disconcerting and uncomfortable for some people, are normally too short in duration to disrupt the blood supply to the heart; which would be a cause for concern.
My journey into PAF and ectopics started with an heart attack. The working theory is the undiagnosed and untreated arrhythmia (PAF) caused a thrombotic effect. Basically a small transient clot formed and entered my heart. I kind of feel fortunate in strange way, it could have gone it my brain and would have been altogether a different story.
Perhaps the cardiologist was alluding to the practice of recommending a permanent pacemaker so you could tolerate beta blockers without your heart rate dropping too low. This may allow suppression of your ectopics more safely.
Our medical fraternity-although frequently wonderful-are not experts on everything and the gaps in knowledge of the actual GP can be considerable which is why we have specialists.
They in turn are very expert on their range of expertise but are not always good on adjacent areas of medicine.
Ectopics fall into the category of unglamorous, boring, mundane and "benign" are consequently often an area of mystery for many medics or not fully examined and dealt with as they are very unlikely to cause you serious harm
This therefore completely underestimates the mental harm they can do, the anxiety, the related aspects such as sleeplessness.
It is an area that warrants far more research and empathy from the medical fraternity instead of a shrug.
The usual triggers are well known but all who suffer can no doubt add some more that relate to them. I suspect lack of sleep, being overweight, anxiety, not enough exercise (at a reasonable level)would all figure somewhere
Hi, I had 34,000 extra ectopics and Bigeminy arrhythmia so on tablets and a CRT-D (cardiac resynchronisation Therapy pacemaker defibrillator). Everyone’s different though so speak to a professional or send an email to cardiologist secretary to pass on and ask the questions so you get the answers you need. I also have very low blood pressure and heart rate and an echocardiogram diagnosed me with dilated cardiomyopathy with an ejection fraction of 35 but with the device it’s gone up to EF45 now. Good luck hope you get answers soon from your cardiologist. Joy
This is just my theory applicable to myself. I have experienced these since my heart attack in January. I wasn't aware why I felt the way I did back then. I think it's due to the bp tabs, I take Amlodipine. They can raise potassium in your blood which in turn can give irregular heartbeats. I like most people in the UK eat potassium rich diet and it's an overload. I've stopped the Amlodipine and cut out temporarily bananas, nuts, grapes, seeds etc and feel so much better.
hi topbook I too am on amlodipine did they give you an alternative when you stopped them? - glad to hear you have settled down with the ectopics take care 😊
Hi Sambobs no I've yet to speak in a weeks time to the pharmacist about an alternative. I had problems before with bp meds so hoping they can come up with something else.
Hi topbook thank you for getting back to me - it’s an interesting one with the amlodipine hope they sort out a good alternative for you, with a lot of meds it’s trial and error. Hopefully we get sorted soon, I do feel in my case medication needs tweaking - at the moment I would give anything to have a full nights sleep - ectopics keeping me awake yet again take care let us know if you can what they have prescribed for you 😊
I had ectopics all my life strong ones that I could feel this only changed after menopause I’ve no idea why . I wondered if it could have been hormone driven but wondrously things have calmed down it did affect my whole life though
Hi I have Heart Failure which has improved with medication. They are considering giving me a Difib which is similar procedure as a pacemaker. They had mentioned my age being a factor to delay it as a battery needs changing every 6 to 10 years. And they said so it would need changing several times for my expected life span. I turned 50. 4 days ago. So I would take it has a positive as they expect you to have a long life span.
This is exactly the position I am in but I was given a very low dose of Bisoprolol (1.25mg) which has settled my ectopics really well. I also have bradycardia and have been told I may need a pacemaker if this worsens and I become symptomatic with it - ie dizzy, fainting etc. I will be kept under review by cardiology.
Hi Blondie, you may have tried this but have you tried working through and cutting out the main ectopic triggers in particular caffeine and booze to see if this helped. My ectopics are definitely linked to caffeine. Never had any quadruples but had some triplesBest wishes Lexi
Yes I drink decaf tea and coffee, I feel they are kicking in because I have been ‘over exercising’ for a number of years so my resting heart rate is maybe on the lower side (not had this confirmed though) cardiology said cut down on it
does having a low heart rate give us ectopics (more time between beats to kick in) or do clusters of ectopics mean it gives us a lower heart rate reading as monitors don’t understand what’s happening
I have constant bigeminy and some trigeminy, and my cardiologist has said it makes my Kardia give a false reading of bradycardia.
I only use it when my heart feels calm just to see if it's 'normal' but there's always ectopics.
My cardiologist wants to get it under control in case the extra workload damages my heart which is healthy, it's just the electrics that aren't working properly.
Hi, my experience and simple logic says an ectopic when experiencing a low HR (bradycardia) is more obvious because the gaps are already wide between beats. ie my HR is typically 40. What is of importance is whether the diagnosis is Sinus rhythm bradycardia with ectopics . For me a new patient GP medical following a house move identified my bradycardia. The HCA hadn't seen such a low reading, most people have white coat syndrome elevated readings ! I was referred by the GP for cardiology screening and all the results came back with nothing to see and get on with life. Although overweight I did cycle and walk a lot, more than most of my peers, and the bradycardia is often associated with good levels of fitness.
Move on 8 years to the age of 70 and some heart issues kicked in. But my continued fitness levels were said by professionals to have contributed significantly to my recovery. After the first event I changed from cycling to running, having never run in my life. It was definitely a more demanding regime than cycling but meant I was closer to the ground at slower pace if something happened (😁). It did but again my fitness levels weren't to blame but definitely aided recovery. So as soon as I could I was exercising again with medical approval
Now a caveat. I just exercised as a layperson before my event, trying to improve, further and faster, no science, but not racing etc. Since starting to run I have done this much more knowledgeably and much better focus on what my body is telling me. I am running and exercising for maintenance not improvement, and monitor my metrics with Kardia, smartwatch and BP (from time to time).
My 6 lead Kardia gives reliable bradycardia reports. But some ectopics will sometimes say too much noise to give an assessment. But such recordings of the ectopics are important. In my case they are PVC's .
My takeaway remains that life is for living. The heart and all the related systems are fiendishly complex and medical science probably knows a lot about a little. Worrying won't make you better or better informed. Anxiety is par for the course and exercise is a great management tool.
thank you for sharing your story. What a lovely response. I am considering getting a cardia 6 lead mobile device but I dont want to be obsessive about using it but perhaps here on there it might be useful just to see what is going on. Does kardia display when ectopics are present? Or is it as you say too much noise to pick up
Yes, it does show the ectopics but reading a 6 lead ECG takes years of training. It is reassuring for sinus rhythm and if you were conscious you might be having an event if you had the Kardia handy you might capture it. But the output quality is at clinical level. I personally wouldn't pay for the add on services. But if you are really concerned about health monitoring then BP and HR are the ones to focus on especially if you have a GP appointment. I say this because most heart issues have BP symptoms. But purely electrical problems are much harder to pick up and assess for risk. My Bradycardia with ectopics was considered a benign issue, as are many AFib diagnoses. It is hard to determine at the individual level whether a more serious event will occur. After the stroke I had an implanted loop recorder ILR (like a Kardia device) to see whether any electrical issues could be found. After 3 months of normal, a short Afib event was detected so medication was changed as this event is associated with strokes. BUT it's all post hoc and filled in a few of the knowledge gaps!!!! More than happy to answer any questions but no two people are the same!
I get ectopics; PVCs and others. They come and they go, but when I get them, I feel horrible. The most I have recorded on the Kardia 6L is 29 in a 1 minute recording. It went on for some time when I was supposedly relaxing in the evening. Cardiology always say they are harmless. Since I first noticed them back in 2004, I guess they are!
You use the Kardia with a smartphone to make and keep the recording. You can also print it out-I download to laptop first, For me, the point is that I can see on the trace what is happening. I have gradually learnt what to expect. It can be confusing to begin with.
So I am looking for anything unusual that is the trigger to talk to the GP. (Like attrial fibrillation for example - still learning what that looks like - it warns me that a particular trace is AF, but so far it hasn't been when I've been to the GP.)
Hi Blondie - my only way of checking my ectopics as well as feeling them😤is through my oximetre the pattern seems to be the ectopics kick in then my HR drops think then it feels really uncomfortable 😊
yes this is relatable. Do you think the ectopics kick in first and that’s why it shows a lower heart rate or do you think it starts with a lower heart rate and the ectopics kick in between the beats?
I’m not sure if everyone is aware but the British Heart Foundation offer a cardiac nurse free phone line if you just go onto Google and type in British Heart Foundation cardiac nurse you can call for free and it’s all confidential
Hi Blondie I think in my case I do take a beta blocker so that slows things down anyway, but I can see on the oximetre as I said earlier my HR can be between 50-65 then ectopics kick in and it can drop to the 40’s - do they make you breathless I notice this more when I’m walking 😊
Hi blondie12345. I've been in a similar position, following a cardiac event I was placed on beta blockers (amongst other cardiac meds) despite having a low pulse. Long story short, these left me absolutely wiped out however I was periodically having palpitations still (despite these being cited as harmless they were awful and eventually led to emergency admission). I've been through cardiac rehab and the brilliant nurses there suggested contact my GP for "a pill in the pocket" ie a low dose of bisoprolol which I can take as and when I get the palpitations. GP was happy to prescribe and I've used it to good effect on one occasion so far.Rehab nurses told me it's a old fashioned thing but really works. It may be worth a try given the cardiologist said beta blocker might be useful.
I'm now back to full strength and fit again walking 5-10k per day and feel so much better then I did in February when I was admitted to hospital.
Although they feel like extra or skipped beats, ectopic beats are beats out of place, so they appear either earlier or later than they should. We all have them but mostly they go unnoticed unless they occur very frequently (a "high burden" in medical speak) in which case treatment may be offered. A 24 hour holter monitor is often the first step in diagnosis. Some find ectopic beats disturbing even at low burden and, as has been said, there may be triggers that you could avoid.
It took a year before any test could "catch" my ectopics, they were so random. I could go a week or two without any- guaranteed to be at the time when I had a holter monitor. Eventually they booked a stress test which again showed nothing but when I sat down to rest afterwards they left he electrodes attached and thank goodness I had a run of ectopics. They oculd finally see where they came from and I was told they were completely harmless. Once I knew that I slowly stopped worrying about them and very gradually, as my anxiety got less, they stopped. I had maybe 3 now in about 8 years. Constantly thinking about them and worrying is a huge trigger.
Were your ectopics after the stress test PACs or PVCs? As a testament to the uncertainty of the significance and natural history of PVCs in the absence of structural heart disease, some cardiologists now feel that PVCs occurring after exercise are more concerning than those that occur during exercise. That worries me as that's my pattern. However,your good health during the last 8 years is reassuring.
Do you have a smartwatch or a Kardia? The ectopic beats are clearly seen on a smartwatch or a Kardia recording. . They are early beats. The PACs have P waves and normal QRS and the PVCs have no P waves and the QRS is wide and often very abnormally shaped. The smartwatch and Kardia recordings are only 30 seconds long though and you have to activate these gadgets when you feel the ectopics as opposed to wearing a monitor which is continuously recording.
I do have a Fitbit but I’m not sure what to look for in terms of what the reading is giving me. Usually when I get a cluster or low resting HR Fitbit doesn’t seem to understand and reads ‘inconclusive’
Do you have a photo of what to look for on the ecg trace? ( I understand a smart watch reading isn’t by any means accurate)
A smart watch or a Kardia may be inaccurate in its interpretation. However, with a Kardia you can sign up with a cardiology team that will interpret the tracings for you.I'm sad.to admit that I'm not technically savvy enough to send you any photos.
They didn't actually tell me; only that they were harmless. That must now be roughly 11 or 12 years ago. I wouldn't say good health since then as i had a heart attack 6 years ago but that had nothing to do with any kind of arrhythmia . It was a straightforward blockage. However the noticeable ectopics never did come back. I could count on one hand the number I've actually felt in those 12 years and those were only at very stressful times like a bereavement.. My BP machine does occasionally show ectopics but I don't feel them at all so I just don't think about them.
As it seems you've been assured your ectopics are harmless, I'm going to suggest researching taurine, possibly with L-arginine? I was having a daily burden of 29% ectopics, all in the daytime which I surmise means "every waking minute". Doctor assured me they were benign but they WERE affecting my life, including--I think--limiting the effective distribution of oxygen. I also already have a very slow heart rate (Hashimotos). Tried beta blockers in the past--they chilled me out but didn't stop the beats.
Taurine did.
Now to be fair, all of this only went down last spring, so I can't attest to long-term anything. I have discovered that if I miss a couple of doses (I'm currently taking some in the morning and evening,) PVCs will start to creep back, but I've still never seen bigeminy as my "normal heart rhythm" yet, and when I get back on track, the ectopics calm down again.
It's a lot of taurine to be ingesting (studies suggest up to 20 g a day--I got up to 12 g, titrated up--before they stopped (took three weeks, too, so give it time,) but supposedly risks are small. And, whatever is going on with my body, it seems to be able to outwit any intervention over time. But taurine IS interesting. Supposedly we can make it on our own, but our ability to do it decreases as we age...ironically things like PVCs increase as we age...but no one (medical) EVER suggests we might be deficient in taurine. Apparently Hashimotos is associated with deficiencies of a lot of things, so...no wonder they started when I started being hypothyroid, and have gotten worse over time?
Anyway, I know how irritating/upsetting/debilitating they can be, and my thought is that if I get any relief at all with something as simple and inexpensive as taurine, it's worth a try. It supposedly is actually beneficial to a lot of systems,too.
I'm in a similar position after having had myocarditis. My pulse has always been slow especially at night. I'm on bisoprolol and other heart medications. They would normally increase the bisoprolol to deal with ectopics but cannot because of my low pulse. They've given me a magnesium supplement instead to see how I get on with that. Perhaps an idea for you. I'm not a doctor by the way. Check with your doctor before taking magnesium.
Hello dg2024 hope you don’t mind me asking how was your myocarditis diagnosed? the reason I ask I’ve read that some people didn’t get correctly diagnosed as it’s a difficult one to pin down and also what were your symptoms hope your feeling better now 😊
That is a great question. It still is not definitive. I'd had a heart mri. The report said it was typical of myocarditis. The only reason I'd gone to the doctor was because of a routine diving medical. I've stopped diving obviously. Other possibility is dcm or sarcoidosis. But most likely myocarditis. Still under clarification.
The ectopicsi get are giving me terrrible headaches and no one sees to be concernedbut i am gettig exhausted and not enjoying life like this. All day about 2an hour with headache coming on and off all day. I am short breathed and a hot burning in middle chest. Anyone else have it similar. Im on 47.5 mg. metoprolol and 10mg rivaroxaan
Hello Alphakiwi so sorry your going through this you have probably read by now on this feed just how much and how many people are going through this, so your not on your own but the anxiety is only lessoned for a while, we just want it to go away so we can live again - I’m still having sharp pains ribs chest but cardiac has been ruled out which is good but still left wondering why I’ve got this - I just wanted to let you know hope things are sorted for you soon think everybody has a different story how there ectopics etc are managed take care 😊
Thanks Sambobs17. It does help to know there are others out there that do understand. Will it stop. So far its been 6 odd years and now fr the last year im told ,permanent.I guess we are all waiting for the new magic pill which my doc says doesn't exist. Three years ago i was offered pace and ablate. I thought it was the answer but i only got the pace bit. We revisited the idea recently but still it is no. I would like to hear others thoughts on it actually. At 82 what have i got to lose. Im just about on the bottom of the pill barrel. Take care all you lovely people. From NZ
Hi Alphakiwi it’s all very frustrating - have they kept you under cardiology? I would like to know why they are not going ahead with ablation it’s got to be worth a try - it wouldn’t be so bad if there was a pathway with these issues that we have but the approach seems to be different with everybody - I handed in a heart monitor last Thursday so I’m thinking of ringing my surgery tomorrow to see if there are any updates but not holding my breath! - I really hope you get some answers soon we just want to feel well don’t we take care 😊
mine have been ongoing for a couple of years now. First point of call sounds like it would be medication but only once my resting heart rate is raised slightly (and I wish to take meds) I guess everyone’s symptoms are different. They seem to base it on a figure of how many ectopics are happening over a 24 hour period aswell so depends what threshold you are in
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Heart failure
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