Ectopic Beats and Afib recurrence - Atrial Fibrillati...

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Ectopic Beats and Afib recurrence

Lonelytraveller profile image
30 Replies

Hi All,

I am now more than 6 months out of the ablation and the 3 months follow up was okay. I am on bisoprolol. Lately, I started feeling many ectopics and as of last 3-4 days they seem to be with me all the time. Two weeks ago, I went to an ER following a sleepless night of anxiety (ECG no Afib and discharged with an EP referral). The trouble is now I am in the USA (I do not live here) and kind of shocked with the costs of hospitals/treatment even with a gold health insurance (a couple thousands for the ER visit coinsurance payment to begin with !) And I can not counsel my original EP with the lack of any current test data.

Anyway, I managed to see an EP last week, ECG was still no Afib and with few ectopic beats. The EP ordered 24 hrs Holter monitor and ECO. Both completed as of today. Now I am waiting for the EP to see my results and to reach back to me on that. In the mean time, I asked the clinic staff that I was having constant ectopics and not having sleep and they advised me to visit the ER again if it gets worse. Wouldn't making the EP address the issue sooner be a more plausible approach ? Anyway :) With the lack of a specialist view for now, I turned here to hear from you members whose ideas I value very much.

My question: I know ectopics are very much related with anxiety and many say they are often benign. Yet I feel this may not be the case if you have an Afib history/condition and I have read pieces suggesting ectopics may also be signs of recurring afib. This concerns me a lot as you know what an awful thing an Afib condition is. Can anyone share ideas?

By the way the EP said, "An ablation may push Afib away by ten years". As I understand the implication is that a recurrence is inevitable in the long term not just for me but for all. I knew that ablations had success rates but this was all new to me. For info.

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30 Replies
SeanJax profile image
SeanJax

in the States, ER cost is prohibitive since insured peoples pay for the uninsured. By laws they have to treat everyone with or without insurance. So in my opinion, buy a single lead Kardia thru amazon and it will let you know if you are in Afib or not. No need to go to ER. 24 hours Holter is not enough as you know Afib episodes come and go. You are already on Bisoprolol so you should be covered as rhythm control. I don’t know your Chad vas score so I don’t know if you need blood thinners or not. In the meantime I would go see a GP , here they call PCP, primary care provider to ask for some medication for anxiety and sleep issues. Ep don’t want to prescribe controlled substances. Other thing in the mean time to do is to load yourself with magnesium and bananas and coconuts water to calm your ectopics. Magnesium will also calm your anxiety and helps you with your sleep. Take it on empty stomach before bedtime. It is too soon to talk about another ablation since there is no need of it. Hope it helps

Lonelytraveller profile image
Lonelytraveller in reply toSeanJax

Thank you so much SeanJax, all good advice and I appreciate it.

BobD profile image
BobDVolunteer

Ectopics are actually a good sign as gthey show that your heart is trying to go into AF and failing. The sloww deeep breathing thing works to stop them in most cases if you do it right. Use your diaphragm not your shoulders pulling down and then pushing up as far as you can. Slow your breaths down to less than six a minute for at least five minutes, longer if possible.

Ectopics ARE benign, just annoying and seldom treated.

Lonelytraveller profile image
Lonelytraveller in reply toBobD

Thank you BobD, trying breathing exercises and thank you for the reassurance.

Ronnieboy profile image
Ronnieboy in reply toBobD

Dont go on strike bob,your as good as a nurse any day of the week.😀

Jetcat profile image
Jetcat in reply toRonnieboy

I agree Ronnieboy. Nurse bob. 😜

ETHEL103 profile image
ETHEL103 in reply toBobD

Bob can you tell me why these deep breaths help please.I try my best but have never managed to stop them.

BobD profile image
BobDVolunteer in reply toETHEL103

No idea but they do for many people. I think it depends just how thorough one is and determined . I try to suck my diapragm down to my spine and then pull right down so my stomach is bulged up. Dr Gupta did a video about it some three or four years ago.

Hello Lonelytraveller, we have an information sheet on Ectopic Heart Beats here: api.heartrhythmalliance.org... I hope that it may reassure you a little. Please feel free to contact our Patient Services Team if you would like any advice or support : info@afa-us.org

Ectopic beats info
Lonelytraveller profile image
Lonelytraveller in reply to

Thank you Katrina!

Autumn_Leaves profile image
Autumn_Leaves

FWIW, I have ectopics constantly as well as paroxysmal AF. They do drive me mad at times and being in “permanent ectopy” can have a considerable impact on quality of life. Chances are, you have areas of cells that are very irritable and are firing off rogue beats at random, and if they are very frequent you probably have several areas of errant cells. If so, you probably won’t get that much relief from breathing exercises, at least not enough as to make them go away but you might get a few less per minute. By all means try it, it will certainly make you feel less stressed and will help your overall well being. I’ve not had much success with magnesium supplements but they’re still worth a try. You may have triggers like caffeine or alcohol but you can only find out through trial and error. I’m a plant-based saint, I’m a right goody-two shoes to begin with, so all my “lifestyle” factors were more or less in place to begin with, but my ectopics went from hundreds a day to thousands and then I developed AF. I think in my case it’s because of have haemochromatosis which can cause iron to be deposited in the heart tissue, besides people with haemochromatosis are known to have more ectopics than the general population. But you should always look after your general health all of the time anyway. Just because you have an arrhythmia doesn’t mean you’re exempt from developing another non-cardiac condition, and the lifestyle advice is the same no matter what.

Unfortunately some of us do develop these areas of rogue cells that don’t want to behave. Ablation is one option for ectopics. It’s not as invasive as AF ablation as I understand it, but do you want yet more procedures on your heart? Only you can decide if you can live with these ectopics or not. Maybe for you ablation is an option you’d like to consider. Some people have some success with Flecanide, I don’t know if you’ve tried that already, but you’ll need monitoring for that at first.

Accepting ectopics as part of life is probably going to become your reality if they continue as they are. I’m told that they are not related to AF but for me, worsening ectopics were part of the trajectory towards developing AF. Some people have AF and don’t have a problem with ectopics. However, a lot of people who have their AF treated with ablation develop ectopics beyond their blanking period. So…. I suppose some of us just have to accept ectopics as part of the package.

Lonelytraveller profile image
Lonelytraveller

Hi Autumn_Leaves,

Your text reads like someone who has suffered from this condition and still depressed by it. I am trying to empathize with you. I have also suffered to an extend and as you see I am anxious. Thank you for your remarks and I hope your condition approves in time.

"I’m told that they are not related to AF but for me, worsening ectopics were part of the trajectory towards developing AF."... This is what I have heard from other people as well. So unrelatedness of ectopic-Afib is disputable for me.

In my case I did not have ectopics before the Afib and the Ablation, or I did not know, and now I have them almost constantly after the ablation, though no Afib. It seems like it is another reaction that the heart is giving with the absence of Afib, and I am afraid possibly evolving to Afib.

As you said, not many things to do other than life style issues, by the way I have always been a healthy eater and have minimum of the risk factors for Afib, yet here I am.

Thank you.

Autumn_Leaves profile image
Autumn_Leaves in reply toLonelytraveller

I’m not depressed by it but rather I am accepting of it. This is my reality. The trigger for me was a viral illness several years ago and there was possibly cumulative iron deposition from haemochromatosis, which at that time was undiagnosed. I am confident that I have looked after myself to the best of my ability and I do believe that the role of diet in particular is grossly oversimplified and overestimated, not just in AF but in many other conditions, but such is the zeitgeist. It’s enmeshed in popular culture that we fix whatever is ailing us by adopting a new dietary regime and a handful of supplements. Perhaps it gives people something to do, or a sense of feeling in control. The question with these stories is always “compared with what?” So if someone talks about how much they were drinking, how overweight they were, how much junk they were eating, then yes, of course they may well feel better. But if it’s someone who hasn’t lived like that, they’re already looking after themselves. It’s not a guarantee. Also, when you look at the stories of people who declare their new improved lifestyle hacks, they’ve most often had ablations or are on meds, and are utilising other interventions too. It’s not all down to the cat-cow pose or the organic blueberries. But that’s not to say we shouldn’t look after ourselves just because we don’t see fewer ectopics or less frequent AF episodes. We most definitely should look after ourselves anyway, insofar as that’s realistic and manageable, given that there are some people in their 80s with other comorbidities in this community.

I’m not in any way dismissing the huge efforts some people make to take back control of our health, and we really ought to look holistically at our individual situations. If some people identify triggers and avoid them, that’s fantastic, but it’s not a failing when those strategies don’t work for others.

Lonelytraveller profile image
Lonelytraveller in reply toAutumn_Leaves

Hi Autumn_Leaves,

Maybe "depressed" was not the right word, and you seem to be after a systemic wellness that of course includes and improves the heart condition. I totally agree with your ideas at large. Thank you.

Ppiman profile image
Ppiman

I don't think ectopics are linked to AF in quite the way you suggest, but, most certainly after my ablation for atrial flutter in 2019, I now have many ectopics and they do cause me to feel anxious at times. The key health aspect is to find ways to stop your heart from racing too much when it shouldn't. This can be done with a betablocker or by relaxation and breathing techniques. The latter is the way to go eventually; the former, perhaps, for now.

I feel sure that what you have is similar to me and is benign. You will be fine, despite the feelings otherwise, and in the future look back at this time and put it all down to increased anxiety.

The anxiety you are feeling is contributing to the insomnia. If you get prescription drugs for this, then avoid benzodiazepines as these can, in 30+% of people, create differing levels of dependency and, worse, a kind of rebound anxiety. The so-called "Z" sleep drugs are far better, zopiclone or zolpidem, if all else fails and for short term use.

Safest of all though is self-help: accept that the ectopic beats are doing no harm and will not cause a heart attack or weaken your heart. Your pre-ablation scan will have shown that your heart is in good shape mechanically. Many people have ectopic beats, and post-ablation, they seem to be more troublesome and felt more. A consultant I once saw told me he had thousands daily and they didn't worry him at all! And yet many people worry themselves silly over them. I can't say I don't and, at times, it's very unpleasant and hard to cope with, but it's the hand we've been dealt, and we must learn to cope with it, without extra drugs if possible.

Steve

MikeThePike profile image
MikeThePike in reply toPpiman

Hi Ppiman, you make some good points. Something I struggle to understand is why AF and SVT ablation nearly always lead to ectopics. Is it because the ablation causes unintentional inflammation or scarring? I wish someone could explain this.

Ppiman profile image
Ppiman in reply toMikeThePike

You're right - there is no explanations that I have found. I've read only a little about the effects of scarring except from a few people anecdotally and studies. What is usually said is that ectopic beats are harmless, everyone has them and we feel them more because we are sensitive. Well, no. That is not the case in my view, at least not always. What you say is correct, I feel. I think the reason is as you say - the scarring itself creates the conditions for ectopic areas to form in the heart. Either that or it is a generally worsening condition in some way exacerbated by the ablation.

Like you must be feeling at this point, we could both do without it. Mine are pretty persistent this morning, coming in runs, couplets, triplets and so on. My doctor is at ease about it all and leaves me to rely on stoicism, which I have poor reserves of!

Steve

MikeThePike profile image
MikeThePike in reply toPpiman

Hi Steve, yes I feel PVCs everyday throughout the day. Like you I do a lot of research and I try to read research articles published by EPs. They all say that PVCs in a structurally normally heart are often benign but if they are frequent (1000 or more a day) then they should be investigated. That translates to an ectopic burden of roughly 1%. The reason why is that PVCs can be a trigger VT or VF which can cause sudden death. I wonder how many doctor's or GPs follow this guidance. My GP offered me beta blockers but I refused. I know that BB are not the solution to PVCs. Neither is Flecainide. Flecainide is actually quite dangerous and long term use can lead to atrioventricular block and permanent bradycardia. I don't fancy either so I'm trying my best to live with it until better treatment becomes available. I'm keeping an eye on developments in Pulsed Field ablation for ventricular ectopy. I think that may be a possible way forward in the future. We'll have to see.

Autumn_Leaves profile image
Autumn_Leaves in reply toMikeThePike

You won’t get an ablation with just a 1% ectopic burden! It’s definitely a case of the potential risks of the procedure outweighing the possible benefits of reduced ectopics. Many people who have had ablation for ectopics find that the areas have been missed or they need a second ablation, so is it worth it? If it was a 40% ectopic burden, probably yes if quality of life is impacted significantly, but 1%? Probably not. My constant also said it depends on how symptomatic someone is, if they feel dizzy, faint etc, and not just an awareness of erratic beats.

MikeThePike profile image
MikeThePike in reply toAutumn_Leaves

I totally understand and I'm not actively seeking an ablation right now but I may want or need one in the future. I don't think it should make any difference if you have 1% or 40% we know that ablation for ectopics is a standard procedure. The only problem is that if you have a low burden of PVCs on the day they may not be able to successfully pinpoint their location. My burden is 1% but I have then constantly throughout the day so I can't see how they won't be able to map and ablate them.

Singwell profile image
Singwell in reply toMikeThePike

Hi, I'm surprised to hear that Flecainide can lead to bradycardia - it tends to increase the HR and I understood can lead to atrial flutter. Did you read about this somewhere? Curious to know as am on Flecainide at present though just titrating after a nice period of stability post ablation

MikeThePike profile image
MikeThePike in reply toSingwell

Hi Singwell, all heart drugs have potential side effects but fortunately most users will never experience them. Generally they are safe to use and well tolerated. There are always extreme cases though and here is an interesting example:

jacc.org/doi/10.1016/S0735-....

Lonelytraveller profile image
Lonelytraveller in reply toPpiman

Hi Steve, good points.

My pace is very good, 60 to 70, mostly 60-61-62 thanks to Bisoprolol. My concern is the ectopics and the state they bring me in, fatigue, nausea, SoB, etc. The good thing is that I can exercise and the last EP I have seen also encouraged me on that " You should go on with whatever physical exercise you are doing, do not let this constrain your life, live your life..."

One thing you said " Your pre-ablation scan will have shown that your heart is in good shape mechanically. "...Well my pre ablation ECO said both left and right atrium/atria were dilated, enlarged, meaning Afib worked on them and made a structural effect...As far as I know ectopics in an otherwise normal heart are benign but if there is structural change ectopics may imply other things.. What are they I do not know...That's bad, but my EP told me in 3 months follow up that atria were shrinking, he was not numerical though... I do not know what ectopics mean in this context. Now I will ask the EP on this once he gets back to me with the holter and ECO taken last week.

Did you hear any side effects of bisoprolol, as causing ectopics?

Thank you again for good advice .

Singwell profile image
Singwell

Hi, totally understand the anxiety but as Bob says , it's actually a good sign- no AF! Like you I started getting ectopics a few months after ablation. It was my 2nd so I didn't worry about it. The breathing thing works. Here's how I do the 6 breaths a minute that Bob advises. And it almost always works.

1. Sit or lie comfortably so that your tummy can move easily when you breathe in. If you're lying down, this is easier on your left side assuming you can tolerate this.

2. Take a breath in.slowly through your nose. I usually count a slow 2. Let your tummy relax when you do this so it moves out gently.

3. There is a natural pause for most people after the inbreath

Try to tune into it but don't force it.

4. Let the breath out again all in one go - don't worry that you'll be out of breath - there's always air in the lungs right up until our last moments

5. Don't be surprised if you feel like another pause after the outbreath but again - don't force it. Keep tuning in either to the feel of the air moving through your nostrils or the sound.

6. If you need to breathe out through your mouth purse your lips slightly as it helps to feel the breath and know we're in charge of it.

6. Repeat.

Typically your breathing rate will calm and slow down. You may even feel like you're about to drop off to sleep.

This technique is one of many used by breath practitioners to help calm our systems and regulate breathing. I have often got my HR down by 15-20 BPM using this technique and sometimes seen my AF off. Also helps me if I cannot go to sleep

Autumn_Leaves profile image
Autumn_Leaves in reply toSingwell

That sounds nice and relaxing, Singwell. It’s very true that these techniques can alter our body chemistry and switch us into the rest/repair mode.

Lonelytraveller profile image
Lonelytraveller in reply toSingwell

Hi Singwell, great post and appreciate your explanation of Bob's 6/min breath exercise. I will try. But do you it should be done when in discomfort or as an everyday routine to improve breath and heart capacity ? Thx in advance.

Singwell profile image
Singwell in reply toLonelytraveller

Both. Practise it when not in discomfort so it's easier and familiar when you are. It's good for de-stressing generally.

DawnTX profile image
DawnTX

it’s horrible being without a doctor. I moved from Florida to Texas and was in the same boat as you. There is no cure for a fib but realize and it’s not necessarily a failure of your ablation it could be a new spot or they didn’t get the right one completely. If you have flutter I just found out my atypical flutter is almost impossible to map for an ablation. It is why my new EP does not think it may be the next answer for me. You have to get the mindset a fib is forever. 10 years! I would take 10 months or weeks to have a break from my atypical flutter or my a fib. Do you don’t realize what that break feels like until it’s back again. Did anyone suggest a cardioversion are you able to get one here in the states? I had two kinds of ablations and then a VOM and cardioversion I do not know if an ablation was also done with the VOM my doctor needs to get my records still. There is nothing easy about a fib I hate to break the news to you. There is no other way to say it to you without you wondering what’s going on. It’s hard to take in I never thought a fib was a big deal until I had it and even then it’s been only the past year I have really woken up to what I have. It’s life-changing and not in a good way. Of course it depends how it hits you for me it takes all of my strength out of me because of lack of circulation so I can barely walk and doing something small still takes my breath away. Tuesday I have another cardioversion. I had one the end of October it only lasted 3 1/2 weeks. They will be keeping me and giving me a different medication for a minimum of five doses. I will be in the ICUthe entire time. They need to do an EKG every two hours on me in the event of a change in heart rhythm. The med is to keep me NSR after the cardioversion. It is not is packed full of side effects like amiodarone but supposedly should do the job like amiodarone would. I cannot take that one. I tried it I and was curled up in a ball and wanted to die from it. I have pretty good pain tolerance but not when it came to the illness from that drug. I don’t know how long you are in the US but you need to do something obviously I still don’t quite understand ectopics. They have never been mentioned to me and with all my tests I’m guessing I just don’t have them. I am going to look them up again but what I have is constant high heart rate which my doctor said cannot continue because of what it’s doing to my entire body. My doctors telling me my body is very resistant With the atypical flutter HR stays below 115 to possibly 105 when it is afib I was in the 150s for almost 6 months straight. Not my imagination not a mistake my new EP and Cardiologist and the rest of the staff was horrified and if you saw me when I woke up from the cardioversion with heart rate of 82 you would see the difference. I am praying next week I will be able to stand up and walk like I did the end of October like a normal person for a change

As I said I’ve been there where you are unable to go anywhere while they waited for records etc. once they saw what was going on they wasted no time getting me in for the VOM but changing insurance etc. took me over three months getting situated with new doctors etc. I truly feel what you are going through. Have they increased any medication for you etc. I would think they would start there. My doctors believe less is more to start. Again I don’t quite understand what you are feeling physically. I have never gone to the ER even the first night that I blacked out. I just don’t like going in like that And without a doctor to back you here I’m not sure what happens. The good thing now is my ER and hospital is close to home and my doctors are on staff so they would be there eventually for me. They are a separate group and a separate hospital for heart but also part of St Lukes

if you have insurance and it’s that bad depending on why you were here in the states perhaps you need to make a trip back home. You must have doctors there that you know. I was ready to go back to Florida because my doctor there is still my person he told me. Thankfully I found someone now but honestly with the heart rate of 158 constantly I was convinced I was going to die before I got any help. That is what finally pushed me to get more aggressive getting my new doctors. Without insurance I have no idea what I would do. Hospitals will not turn you away but you know a fib isn’t just a stop in the ER there is much more to it.

You didn’t mention your heart rate etc. doctors here have a tendency to not want anyone else’s input of medical information and they have to do it all themselves. Changing doctors for me meant having many tests done over again but it is their livelihood and career I don’t kid myself it’s not always about me each hospital group has its own protocol.

Where are you in the states? If you are near Houston or Boston you may be able to find more help. Both cities have world class world renowned hospital groups and people come from all over the world there’s got to be a way to get you help. It would not look very good if we let our visitors die because of insurance. Only you can make the decisions you must. If a fib comes back you will know it. When my cardioversion failed I was sitting on the couch. My heart rate had been 72 all day but I looked at my cousin and said somethings not right it happened that fast. I took my heart rate it was in the 120s. It never went back below 105 which is why I may be spending Christmas in the hospital

Lonelytraveller profile image
Lonelytraveller

Hi Dawn TX, I think we have written each other before.

First, I am sorry to hear all the things you have been and will be through...The upside I think, you seem to be quite aware and trying new solutions. I hope you get some relief from now on.

And thank you for empathizing with me... I am in Philadelphia, a city boasting with World class hospitals and doctors, EPs included. Yet, after my ER referral, the first available offered EP appointment was in March (3 months and some days) and the current clinic might have lost my holter record as they were not able to interpret it in a week ! Here I am waiting for a call from the EP on my condition and still concerned and anxious. At least If I get the test results I will send them back to my EP. However, I am looking forward to hear from the current EP as I respect each doctor in the field.

My heart rate is 60 to 70 as I am on bisoprolol and I think my ablation was successful and my EP practicing the operation is quite good. I did not and do not want to have electro cardio version. I was in the ER following a long night with considerable discomfort, shortness of breath and heavy chest.... I thought it could be more serious than afib and I did not want to risk as I was alone...and you can imagine the need for medical care in a country where you have zero medical connection and you think at least ER can intervene if there is a very serious issue and make sure that a cardiologist takes care of you.

Some friends here are positive that ectopics are not Afib and I should be okay, and I hope they prove right.

My concern is... if I need a second ablation I will probably have to have it here. As you said, it takes a long time to build trust and relationship with an EP and the team. I have insurance, but still I do not want to bear all the costs as I had social security (you pay very minimum, almost none ) back at home. That aside, the worst thing would be having Afib and going through the same things all over again.

Yet, I am optimistic and I trust I will be okay.

Thanks.

Lonelytraveller profile image
Lonelytraveller

Hi All,

I think I need to give some feedback on my original post to facilitate some community learning and maybe hear back from some of you.

So, my ECO and Holter results are out. ECO normal (Thank God!) and Holter monitor shows no Afib (Thank God and I am grateful for that! )...However, my ectopic PAC burden is 10%. I mean more than 10.000 beats a day. However, this did not seem to concern both EPs I consulted. One of them says, I might think on a second ablation to relieve the ectopic burden if I want it, but it is not imperative...or I can start Flecainide 50 mg in addition to the current Bisoprolol...He also reminded that Flecainide has a bad reputation in terms of side effects but it should not cause a problem in my situation....The other EP says, I do not need an ablation for now as there is no Afib and I should keep on Bisoprolol and stay away from Flecainide...

So this is it. Overall, very good. As both EPs do not see an Afib recurrence, I somehow think ectopics and Afib are not directly related, at least in my case.

My suggestion to you would be trying not to restrain your activities due to concerns with the Afib and take it out of your mind when possible. I definitely do not think of any ablation while Afib free, with or without ectopics...

As for the medication, I bought Flecainide but I am hesitating to use it as both Bisoprolol and Flecainide slow the heart rate and I am already around 60 now. I cannot imagine how I would react if I started taking Flecainide...Let alone all the scary side effects. I think I will start it if I really feel so bad with the ectopic beats. Would appreciate your thoughts...

So this is it. Thank you all for your remarks and Merry Christmas !

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