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Ablation for Atrial Ectopics?

Marc7 profile image
37 Replies

I first want to say what a wonderful forum this place is, literally a lifesaver! so informative, thank you all for so much information.

I started suffering with Atrial Ectopics after my 3rd Covid jab in 2022, but they were only once a week for a few minutes. Gradually they got more often, once a day, then many times a day, until October 2022 when I started to get runs of them 7 or 8 times a day for an hour or more each time in Bigeminy.

I found this distressing, even after seeing the NHS cardiologist who said 5k of PACs a day is 'fine' and nothing to worry, however I was worried. I had done some reading and a lot of recent research seems to say more than 720 or certainly 3k a day of PACs [not PVCs which seem to be ok up to 15k a day] can progress on to more serious issues, like Afib or stoke or worse, sudden death.

My Question is, has anyone had an ablation for ectopics? and anyone had an ablation for atrial ectopics? and what burden did you have? were there any downsides to having the ablation done? how long did it take to recover? where did you have it done and would you recommend?

Opinion seems to vary between the cardiologists and EPs I have spoken to about ablation for these atrial ectopics, even though they are high burden and causing QoL issues.

I have trialled medicines (Bisoprolol & Flecainide) but nothing seems to impact them for any longer than a few days, I don't have any side effects to the medicines, but the ectopics simply breakthrough the meds after a few days. Appreciate any ideas for other medicines that have worked for others?

I've always lived a 'clean' lifestyle of gym most days, eating healthily, non smoker, no drugs, low alcohol, yoga, mindfulness, so most of those things are covered already.

Do some EPs specialise in ablation for atrial ectopics? are there a few who are known to really concentrate on this issue? as having a high burden but being told they may not cause any more problems so it may be best to just accept them is quite hard!

Appreciate any replies

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Marc7
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37 Replies
Autumn_Leaves profile image
Autumn_Leaves

I’ve had problems with ectopics for over 10 years and I’ve had several thousand recorded on a 24h ECG. Ablation has never been offered. They generally don’t offer it until your ectopic burden is 20% minimum of your total daily heartbeats and even then I’ve known people who have had a 35% ectopic burden and still not offered ablation. Generally speaking, ectopics are not considered a serious problem by cardiologists even though they are unsettling for the individual. I expect you would have had a 24h ECG to investigate the extent of the problem and if so it should report on the number of individual PVCs, PACs, bigemeny, trigemeny etc, and ruled out more serious arrhythmias like AF.

The decision to go for an ablation has to be made with the full understanding that it’s not necessarily a one-and-done procedure. Sometimes it doesn’t work first time, sometimes the relief from symptoms is temporary and the ectopics might return after a couple of years. You’re also having someone poking around in your heart and burning bits of it, and is it really worth the risk for a problem that may not have any implications for your long term health? Only you can make that call.

Have you had an echocardiogram yet? If not I suggest you go about trying to have one. Everyone has a few ectopics here and there, that’s completely normal but not everyone can feel them. If you’re having more significant problems with ectopics there MAY be some emerging issues with your heart valves — and everyone develops some degree of regurgitation after the age of 40. For some people this needs to be monitored as it could be progressive. This is often the “root cause” of more serious arrhythmias especially AF. These problems have nothing to do with your lifestyle. There’s sometimes a genetic component but in affluent western countries it’s something that occurs increasingly with age. Your heart compensates for the extra back flow which can eventually cause conduction problems — hence arrhythmia is often the first indication of something not quite right. In any case, you need an echocardiogram just to make sure that your heart is working well with no structural problems so you don’t need to worry about the ectopics being a sign of anything.

I would say, give it time and only go for an ablation for quality of life reasons. Weigh up the risks and benefits and decide if it’s worth it. Above all, be realistic about the outcome.

Marc7 profile image
Marc7 in reply to Autumn_Leaves

Hello Autumn_Leaves,

Thank you kindly for your reply,

I've had cMRI and CTCA and Echo all showed heart is in 'mint' condition as the cardiologists have expressed it! which is great news, just seems to be an electrical issue.

Had a private 48 hour Holter Monitor, suggesting 5k PVCs a day 6 months ago

Then had another 48 hour Holter Monitor a few months later and suggested 5k PACs.

Turns out the first one, was PACs but looked like PVCs due to aberrancy, so all now confirmed as PACs , at that stage 3-6 months ago mostly runs of bigeminy and only 5% of total beats.

However, decided to buy a 24 hour monitor and keep an eye of things myself, however did not use until a couple of weeks ago, and heart now in trigeminy (normal-normal-ectopic) but most of the day, so more like 20-30k PACs could be possible, worryingly.

As I've always kept fit and healthy and my heart does seem in good condition, the cardiologists don't seem too bothered by the high burden PACs.

My worry is it seems my 'normal' rhythm may be transitioning to be more like permanent trigeminy, I can't seem to find anything about such an event happening to others (on the internet) and when I've asked a couple of cardiologists and EPs they shrugged their shoulders and hadn't come across it either. Hence, want to try and find a cardiologist/EP who has dealt with high burden PACs, I think if told, high burden Atrial ectopics are not going to cause issues for a few years or a decade I could relax a bit more.

Ablation seems to sound so safe, with problems only around 2-3-4% it seems a good route to investigate. I note it is mostly done for AFib and assume that is more complicated to ablate than PACs if they are uniform PACs (coming from one area in the heart).

It would be a nightmare to go in for an ablation and end up with more ectopics or Afib or worse a stroke. From what I have read high burden Atrial PACs have a high incidence rate of leading on to AFib, but don't for sure in all people, so trying to balance up the risks. On top of that I note the new pulsed field ablation method, which may be worth holding on a while longer for, to see if this could be a quicker or safer way to look at PACs ablation.

After you have an ablation do you have to continue on medication? and for how long, if you do know

Thank you again

Marc7

mjames1 profile image
mjames1 in reply to Marc7

Depends on the ep, and your individual situation. I was told to continue on Flecainide for 4 weeks post ablation. Some stay on it longer. Some shorter. Pulse Field Ablation (PFA) is good for a PVI afib ablation, but for now, it's a blunt instrument, meaning not suitable for detailed work outside of the pulmonary veins where the PACs may be coming from. Not sure where the 2-4% come from, but my guess it's higher if patients were followed up the way they should be. I would try to moderate your exercise first, combined with any stress reduction modalties like meditation, yoga, etc. I just paid for the premium "Calm" app on my iphone. Listening to falling rain as I write. I really would leave ablation a last resort here and not try and project that what you have will turn into afib. If it does, then deal with it. Until then, try dealing with your PACs without an ablation, unless they get to the point where they are too disruptive.

Jim

Autumn_Leaves profile image
Autumn_Leaves in reply to Autumn_Leaves

It looks as if you’ve had thorough investigations and everything is structurally fine. That’s very good news. There are many suggestions as to how to try and minimise ectopics and they are all worth considering, but as you have learned from experience, sometimes there’s no relief no matter what you’ve tried. I’ve tried many myself -— I quit caffeine, took magnesium, did breathing exercises, valsalva manoeuvres, electrolyte drinks, coconut water, intermittent fasting, this, that, all sorts of ideas that I thought my help, but none of it did. If you’re electrolytes and OK and you’re not deficient in magnesium, taking magnesium supplements probably won’t do much. If your ectopics are not triggered by caffeine, giving up coffee won’t make any difference. But you don’t know until you try. Sensible self help measures that are good for your general health are always worth doing anyway—sleep, stress reduction, a healthy diet and a sensible amount of exercise. You always have to look after yourself no matter what.

I’ve had episodes of trigemeny as you have had, it would be my predominant pattern for hours. It’s very strange how it keeps happening on the third beat. It’s quite freaky, really. But what I can say is that sometimes the sheer number and frequency of ectopics can settle down considerably although the improvement doesn’t seem to be permanent and there’s often no rhyme or reason as to why there are bad phases and not-so-bad phases. It’s even possible to have a very calm day and have a bad hour of ectopics. I think it’s the unpredictability and the lack of conscious control that’s so unsettling to the mind.

As for progression, the generally accepted wisdom is that ectopics won’t lead to anything more serious, but I would add the caveat that it all depends on the underlying cause. If your heart is in very good structural condition then it’s probably safe to say that you’ll be fine. However, it’s a good idea to repeat the echo in a few years time to check everything is still fine. I had a normal MRI in 2015 but a repeat MRI in 2022 showed some mitral valve regurgitation and some left atrial enlargement. This was one month after my first AF episode and these are common findings in AF. These changes are very gradual and AF doesn’t typically happen out of the blue, ever if it feels like it does. Many conditions are silent up to a certain point. So for now, if everything on your scans looks OK, nothing is likely to happen suddenly.

All you can do for now is to give the meds some time and see how you get on, then have a repeat 24h ECG to see if it’s better, or worse, or no change. If you start getting dizzy spells or feeling faint with the ectopics then there would be a case for ablation. If your ectopic burden was so high that the efficiency of your heart is compromised, that could be a good case for ablation. All you can do for now is keep an on things but try not to let it dominate your life too much.

mjames1 profile image
mjames1

I've had more than 10,000 PACs a day at times and none of my doctors were concerned. The question you have to ask yourself is it the PACs themselves that are affecting your QOL, or is it worrying about them? If it's the latter, hopefully what your doctor, my doctors and much of the literature said should reassure you. As to what you read, if you research enough, you will always find some one who is raising alarms :) Also, note that bigemeny and trigemeny are often stress related, perhaps from worrying about the PACs?

In my case, my 10,000 PACs a day, just went away at some point. I found that either too much exercise or not enough exercise tended to cause them.

You can ablate for PACs, but after just going through a couple of ablations, think twice before having a catheter run through your veins, into your heart, unless really necessary.

Jim

Marc7 profile image
Marc7 in reply to mjames1

Hi Jim,

Thank you kindly for replying, it is reassuring to hear you've had 10k a day of PACs (sorry you did). Also to hear they cleared up on their own.

I think mine increased due to stress, of too much working out, too much going on and too much work on numerous projects. However, I've decided to cut back on working out and work by over 90% and they seem to have increased. This may be due to be decreasing exercise massively, reducing stress of work massively and also starting the meds.

I hear what you are saying about running wires through you veins, into the heart, I'm actually amazed that the human veins can stand more than 1 ablation, but see some people have had 5 or 6. Well done on having your 2 done, can I ask are you now free of meds? I have no sick effects to the meds, but do worry again, that there may be long term sides effects to staying on meds, to avoid an ablation?

Thank you again for replying

Marc7

I’m recovering from a recent ablation for paroxysmal AF. and I’ve had atrial ectopy on and off for many years. A couple of weeks after the ablation the ectopics flared up again and I’m having many hours each day where every second, third or fourth beat is an ectopic. I doubt an EP would perform an ablation for atrial ectopics alone in view of the risks of the ablation procedure. Not sure what the success rate of an ablation for atrial ectopics would be in any case, as my recent ablation seems to have stopped my AF for the moment but not the ectopics!

Marc7 profile image
Marc7 in reply to

Hi Blue_Hamster

Thank you kindly for replying,

You are right most EPs have said to try other things first, life style changes (done), meds (in progress) before they'd consider it.

Sorry to hear it's cured Afib but not ectopics in your case, I've read so many people have ablation for Afib then end up with ectopics which they hate even more than Afib

I've read the risk for ablation itself is low risk at around 1% stoke and 1% worse and 2% minor problems, I have read some people have had their nerves 'hit' causing issues. it would be interesting to read the types of issues that can occur and perhaps by age group or existing health issues, to try to better understand the impact of ablation on different groups of people...

I hope your ectopics start to clear, I have read on here they can last for up to 6 months after ablation, are you still on any meds after ablation and how long will that be for/or expected to be for?

Thank you again for replying

Marc7

in reply to Marc7

At the moment I’m taking lansoprazole to reduce the risks of any oesophageal problems following the ablation, and apixaban. The need for apixaban to continue or not will be reviewed at my 3 month ablation follow-up appointment.

My PAF was associated with atrial ectopics, so I’m a little surprised that the AF isn’t occurring at the moment but the ectopics remain! I’m going to discuss this with the EP at my next visit. I’m hoping that the current flare-up of ectopics is just due to irritated atrial tissue healing after the ablation and that they will go with time.

Have you tried a PPI drug such as omeprazole or lansoprazole to see if that reduces the ectopics? Acid reflux may have been a trigger for my ectopics as those drugs seemed to help.

A daily magnesium supplement is also worth a try.

I found that trying to resuming strength exercise in the gym would worsen my ectopics for a couple of weeks and then they would settle down again, so I gave up stength training. One cardiologist suggested that this might be due to the atria being stretched by increased blood volume when making an effort to lift/pull/push something heavy. Cardio type exercise was fine.

Dark chocolate and alcohol (even a small amount) were also potent triggers for increased ectopics.

I put off ablation for worsening PAF for 2 years until the episodes became frequent despite anti-arrhythmic medication (propafenone in my case). The most common serious risk of ablation is the 0.5% (i.e. 1 in 200 people) or so risk of stroke during or after the procedure, and that was the risk I was most concerned about. Anticoagulation for a few weeks before ablation and for at least three months afterwards is usual to keep this risk from being higher.

OzJames profile image
OzJames

After having too much sugar one day, fruit juice Gatorade custard etc etc… nearly all day I began feeling the ectopics got a holter put on for 48hours and they were happening all the time for a few days with the holter . I’d read somewhere for ectopics that daily doses of Vitamin D, I take 1000iu daily and I was lower end of the scale in my blood test so started the VitD3 I also started CoQ10 and had already been on Magnesium biglycinate and Magnesium Taurate for a month at that time. I also eat a few prunes daily for Vit K2 since March

Since that horrible week in January I only get the odd ectopics after eating too much or too quickly. The sugar intake is cut now other than whole fruit or prunes and dates. Good luck you just have to find your triggers

ozziebob profile image
ozziebob in reply to OzJames

James,

My understanding is that while prunes contain a small amount of Vitamin K1, Vitamin K2 is made by bacteria and found in small amounts in some fermented foods and animal products.

So I don't understand your reasoning for consuming prunes.

Have I got it wrong?

Bob

OzJames profile image
OzJames in reply to ozziebob

Hi Bob… you could be right it’s something someone mentioned here about Vit K2 in prunes but I’ve had a good look online and I can only find K1 in prunes. Nevertheless after reading that I also read Steven Carr’s history of AF and ectopics that was posted by someone. It’s an interesting though read. I noted he tried prunes and they seemed to work. I know what works for one may not work for another and we all must find what works for us. If you’ve not read it let me know your email and I’ll send to you

best wishes

James

ozziebob profile image
ozziebob in reply to OzJames

Steven Carr !!!!!

I am always referring new Aussie members to Steven Carr, so that might have been me.

He is certainly inspiring, but an almost impossible act to follow for anyone, let alone a pescatarian like me. A bit of a one-off, our Steve.

OzJames profile image
OzJames in reply to ozziebob

so true.. I think we take a bit from here and there until we find something that works for us. It would be interesting to know how he’s going as that last update I have is 2021

Marc7 profile image
Marc7 in reply to OzJames

Hi Guys,

Thank you for recommending the Steven Carr link

carrafibdietinfo.com/

it's recently been updated by him to say less than 1g of calcium a day and over 500g of mushrooms has cured him of AFib,

Really informative reading

I agree it is for each of us to find the solution to what works

It is surely an imbalance of one of the salts? if it is not a rouge few heart cells kicking off their own orchestra in our hearts

Marc7 profile image
Marc7 in reply to OzJames

Hi OzJames,

Thank you kindly for replying

Can I ask which brand of Magnesium please? I've tried some but it was generic and no effect, but I'm keen to try more brands, I've got CoQ10, also potassium but no effects on the PACs.

I'll look into the VitD3 and Vit K2 not read about these before

I note some people say stress and anxiety are the 2 most common triggers

I've seen the Dr Gupta videos on other things such as the gut-brain connection and Vagal ectopics

Like you say it's about trying to find the triggers then stamping them out, or reducing them

Thank you again for replying

Marc7

OzJames profile image
OzJames in reply to Marc7

I take magnesium Taurate by Cardiovascular Research and in the evening I take magnesium biglycinate from Renew Actives. They both are more absorbable and easier on stomach, they bound by amino acids and have read that is better. Also get a copy of Breath by James Nestor. Essentially it’s a look at the forgotten way to breathe properly and relax. It’s helped me control my breathing when i sense ectopics, I also feel it’s helped lower the heart rate when I exercise…. or maybe I’m getting fitter! Anyway we all have to remember to enjoy ourselves as I’m sure that can also help remove anxiety

Best wishes

James

OzJames profile image
OzJames in reply to Marc7

also just to add to my reply make sure you have done bloods to see your level of Vit D and potassium. It is thought that excessive Potassium may contribute to arrhythmias I think that could be same with magnesium

Marc7 profile image
Marc7 in reply to OzJames

Hi James

I bought some Magnesium but didn't seem to work, so going to try some other brands, will also look at Vit D.

I've done some breathing classes and will get the James Nestor book, I see regularly on this forum being told to get breathing under control.

Anxiety was a massive issue for the first 2-3 months as I was trying to work out what was wrong and how to solve these things!

I guess it is trial and trial until you find what works for each of us, to reduce the burden or even better eliminate these things!

Best wishes

OzJames profile image
OzJames in reply to Marc7

that’s the key just look at Carr’s experience… trial and error, he was a strong believer in Vit D3. I’ll have a look at the link you sent and start that breathing!

OzJames profile image
OzJames in reply to Marc7

also I mentioned some Magnesium brands on my previous reply you may have missed

Ppiman profile image
Ppiman

I get plenty of ectopic beats. I’ve been told they’re okay by a cardiologist who, himself, told me he gets thousands more each day.. I do get some AF, too. They are disturbing, as you feel, too. The main problem with any arrhythmia is the anxiety it naturally causes and it seems you are struggling with that at present.

I think your doctor is correct, but you need further reassurance. The chances of problems are very slim and occur mostly in people with prior heart issues, which you don’t have. There is no evidence PACs cause or lead to AF, for example, so far as I know. But, worried as you are, I would have a chat with your GP for further reassurance.

Steve

Marc7 profile image
Marc7 in reply to Ppiman

Hello Steve,

Thank you kindly for replying,

Totally agree 6 months ago, when the ectopics went into overdrive (to 5k a day) I was so anxious, having never ever suffered any ill health (or potential ill health) the GP and cardiologist was just like "forget about it" (it reminded me of Donnie Brasco, that there should be no care given to these things)

Having got through the last 6 months, the first 3-4 moths of those, seemed like torture, the ectopics got worse, I had some private work done on my heart, all showed the heart' was ok' but the ectopics were still there and burden increasing. Having the GP and cardiology say that the burden is increasing month on month but not to worry, created more worry.

I then read, that more worry, and worrying in itself can cause a negative loop of more problems, no GP or cardiologist warned about this. Worry in itself is dangerous and can unbalance the para and sympathetic nervous system.

If told at the appropriate time by the GP or cardiologist that not only do I need to take on board the reassurance or there may be further consequences, I would have tried harder to listen. Instead I worried and tried to research and read up more, as I have a keen understanding of human Biology. If told 'do not do this' it could unsettle your nervous system and cause more PACs I would have not done it.

After several months of reading I decided there is no real solution to PACs, disappointingly, mainly i think to a lack of investment over the years as they were considered benign. Having come to that conclusion, that there was no 'easy' fix my anxiety calmed down. However, I am writing this post, to try and help others, as I want others who go through the same thing, PACs that are maybe occasional turning into daily or hourly, to hopefully be warned by their GP or cardiologist to truly not worry, as worry can do a lot more damage, by driving even more ectopics.

I feel GPs are just too overworked and under resourced, even at my local hospital there is no electrophysiologist so I have had to go private to speed things up,

As someone who has looked after their heath always, worked out daily for 3-4 hours to keep fit, I think it is hard to take onboard that this has happened, it started with the 3rd jab for C-19, but once a week for a few minutes was fine, now it's every day for hours on end.

The recent research, the last 5-10 years, is saying that always previously considered benign, now atrial ectopics are consider to lead on to AFib, no guarantees but likelihood massively increased.

I feel lucky to have 'picked it up' on my watch, which first warned me via 'low heart beat' issues, it never was a low hart beat, it was heart going into atrial bigeminy for a few minutes, i just want to try and highlight to others, there may be something in this.

Ionically my ectopics are now higher than they were 6 weeks ago, and I think in to 10-20k maybe higher a day, but I feel ok about it, I feel I've accepted it. However, I know that the burden is high and I need to understand the risk of ablation, or do I just leave it and see what happens the next few years, Afib or worse may happen, that's what I am trying to balance up.

In summary the GPs need to warn about excess worry about this condition in my view. The Donnie Brasco "forget about it" just made me even more worried!

Thanks again for your reply

Marc7

Ppiman profile image
Ppiman in reply to Marc7

I wonder whether that C-19 jab did cause the problem? That sounds interesting to me. And if so, isn’t the issue physical rather than emotional - some immune issue?

It seems to me in general, though, that too little is known about the root cause of arrhythmia. I’ve read, like you, that excessive PACs aren’t benign, and that excessive PVCs can be worse. Mine vary a great deal whereas yours seem to be a constant. I sympathise with you. It must be difficult to live with.

Steve

Marc7 profile image
Marc7 in reply to Ppiman

Hi Steve,

As I wear an Apple watch that constantly monitors my heart, I can pinpoint it to the 3rd covid jab, I do wonder if then that created a problem that was further exasperated by me actually catching covid, it'll be interesting to know who else had PACs or PVCs start after the vaccine or after catching covid

It's been hard to watch the burden grow over the last 6 months or so, but the cardiologists seem to say 'you're still alive' so try and live with it!

I'm sure PACs that are under 1% or even 5% may be benign but when you get up to 20-30K (20-30%) the recent research is clearly saying it causes problems, I don't know if the cardiologists aren't being kept up to date? or just bc they trained to be told all ectopics are benign just want to continue the same?

Ppiman profile image
Ppiman in reply to Marc7

I suppose doctor likely make a positive claim for ectopics unless faced with other evidence to suggest a possible negative outcome. There seems a lot of art as well as science still in much medicine, especially concerning the heart. Partly, this must be owing to the difficulty in viewing it and taking biopsies from it, I suspect.

The link with covid-19 or its vaccines seems a real but very unlucky possibility as there’s evidence that both can stimulate the immune system in various ways, albeit rarely - and that can affect the heart (and other major organs - our friend’s daughter has ANCA vasculitis following her vaccination).

We’re still groping our way into the light following the pandemic and the ensuing mass vaccination.

My own experience is that arrhythmias wax and rain over periods lasting weeks to months. Let’s hope yours will eventually subside. Mine are much quieter at present , thankfully, but I know that might well change any day.

Steve

SeanJax profile image
SeanJax

the best treatment after trying flecainide is to add magnesium and potassium . I take magnesium supplement at a dosage which did not loose my bowel movements. It is error and trial. For potassium I drink low sodium tomato juice. And I got hydrated between 8 and 10 glasses of water a day. For me no stimulant by it meant no alcohol and coffee and chocolate. I got may be 2 pac a day. I got a pulse field ablation in the past.

These supplements worked for me . All of us is different. Give it a try.

Marc7 profile image
Marc7 in reply to SeanJax

Hello SeanJax

Thank you kindly for replying

I think the bisoprolol at 1.25mg worked for 2 weeks, then upped to 2.5mg worked for 3 weeks, for me. The Flec, worked only for a few hours of taking the 50mg pill the first few weeks. increasing the Flec to higher daily dose is next to try (but I do worry, reading it is poison!)

I've bight some magnesium and potassium from Holland Barratt in UK, but had nothing from that, is there any good quality producers you would recommend? I've seen Dr Gupta's youtube videos (wow what a guy, spending his time to try and reassure millions of us, deserves a knighthood at least). I know some of these products are not as good as other producers, so any good manufacturers do let me know thank you.

How was Pulse Field Ablation? was this done in the UK? Do you know if they do it for atrial ectopics? I see the Royal Brompton do it (and Liverpool too) and keen to know more or put myself forward as a Guinea pig! Do you have to stay on any drugs after ablation ? and for how long if any?

I'm reading a lot about improving diet, but I'm already quite a good and heathy eater. From what I am reading on diets, it is about certain salts to reduce that may be causing issues,

Then there is stress and the vagal nerve, the way the heart is innervated by the PV which don't just 'attach' to the heart but are part of the heart. The vagal nerve and para and sympathetic nerves contain parts of the other, making that more complicated and probably impossible to understand even for EPs.

I'm going to try better quality supplements and see how that goes, do let me know what brands are decent and work for you

Thank you again for replying

Marc7

WildIris profile image
WildIris

I had ablation in Texas for ectopics about 35 or 40 years ago. There were 17,000 on 24h Holter, lots of PVCs, PACs, bigeminy, trigeminy etc. The EP didn't get them all, but did get a lot of them. My ex-husband was having an ablation for afib at the same time. I'm sure the standards are different everywhere and have changed in the decades since. I do have PAF now, but not often. And I still have some ectopics, but I sure don't worry about them any more. Meditation helps plus so many years of nothing bad happening.

Marc7 profile image
Marc7 in reply to WildIris

Hello whats,

Thank you kindly for replying,

Wow that gives me so much hope (and I hope to others too reading this) 40 years ago, that must have been when ablation was just starting up, but what fantastic news indeed.

I note some people have said they have had ectopics for 50 years and still alive without ablation so 'to leave them alone', to hear you've had them ablated and that was 40 years ago is amazing. As for me it is a QoL issue, the last 6 months up until a few weeks ago I was struggling and thought the only way out was to reduce them somehow.

Mine have now 'settled' into a more regular pattern, but I don't feel them as much, so I have an unusal issue in that they are higher burden but I don't feel them as often. What this means I'm not sure, as I am worried the higher burden may lead to more issues, or should I just try and get on with my life?

I just wish that here in the UK, there were some 'experts' on atrial ectopics, who I could reach out to, happy to pay, that is no issues at all, but it seems here, they are mainly ignored even if high burden until they cause much bigger issues sadly. But does this mean they are unlikely to cause issues? or just not enough is known about them?

After 6 months and still being here, I feel better, so again incredible to hear after 40 years you're still fine, amazing and well done and thank yo for sharing, are you on any medication after the ablation, or for how long after the ablation were you on any meds?

Thank you again for replying

Marc7

WildIris profile image
WildIris in reply to Marc7

Its possible that as you relax, your blood pressure goes down so your heartbeat is less noticeable. (In my case anyway). Good work, I know its not easy ignoring ectopics, or afib, but it is possible and quite a triumph, more than for people who don't notice them, like my father, who had a very irregular heart beat, as doctors noticed, but not him. (He died in a car wreck, in fact, due to his cataracts, at 83).

Marc7 profile image
Marc7 in reply to WildIris

Sorry to hear about your father in the car wreck,

It seems to be that if you can ignore them you can carry on with 'normal life' I think what I worry about is if I do this, will the high burden cause problems and damage the heart over the next few years? if it did or does, I'll then kick myself that I should have pressed to get the ablation done!

So if I can get the right dose of Meds that stop them I'll be happier.

I note most people have said to try to put off the ablation and go for Meds as long as possible, but then I have read others who went straight for ablation, it worked and they are back to 'normal' with no Meds (or some still have to take Meds for a few months,

Ablation procedure seems to be getting safer, and I assume for someone younger and fitter, it is safer too. If you then add in using a good EP, who maybe specialises in ectopic ablation (if there is one?) then again should be safer again is my thinking

greg35 profile image
greg35

Hi Marc sorry to hear about your ongoing problem with ectopics, I too had ablations 2 inside 6 months for ectopics unfortunately this did not work for me I am now on Flecanide and Nebivolol which seem to help as I had no QOL but as my problem was coming from the moderater band the EP couldn't go there as he said he could cause damage. I also now can't exercise and can only walk at a very slow pace as I would get chest pain with the ectopics not sure why and EP has no idea why I get this it's very frustrating, had scans and nothing has ever shown up, if you find anything that helps you, post as I would be very interested, my burden was 20k a day which left me exhausted! Good luck Ingrid

Marc7 profile image
Marc7 in reply to greg35

Hi Ingrid,

Sorry to hear you had 2 ablations to kill off these awful things, my theory is that whilst some EPs say they are 'rouge' cells in the heart, could it be that it could be where the heart-bran-but axis connect, so maybe ablation just may not work? that is my worry. I am sure sometimes it is a rouge few cells that can be ablation, but other times it may not be able to be ablated as it is a nervous connection, perhaps vagal?

I've read that if they come from the moderator band (and a couple of other areas in the ventricles) it is too dangerous to play with. Ironically I had some private tests (the first 3 months of the last 6 months when things really kicked off) and was told it may be in the ventricles and in an area that you can't do much about, this sent me into a spin! Then I paid and saw some other EPs who then told me the other private advice looked to be incorrect and it looked to be Atrial, so I spent 3 months reading and worrying that there may not be a solution, to then find out the first guys said it was maybe in the wrong area.

Quite worrying that you can have private advice and be going down a wrong path for paths worrying, to then be told that there may be a solution as it is coming from a different part of the heart on closer inspection! It's made me realise to always stay positive, and to always get a 2nd or 3rd opinion now.

My burden was 5k a day up until 2 months ago, it's now higher but more settled. Rather than bigeminy for a few hours then NSR, it is more trigeminy and less NSR. My worry is that my NSR may disappear and I could end up at 20-30k of PACs, but the EPs, cardiologists and GP seem to think that is fine.

I've paid for every test I can and apart from the extra beats, it's in 'mint' condition apparently, which is good news, but seems to point to me, that stress or vagal issues may be the issue. For me meds don't work for long, I've tried supplements, same thing didn't work for long, hence trying to find out about ablations.

Someone said about reading about diet, and that reducing calcium (to less than 1g a day) and increasing intake of mushrooms (to at least 500g a day) has worked to actually 'cure' AFib. Again, I agree, having researched so much about he hear the last 6 months, it is an incredible bit of 'kit', even for the heart to up and slow down when walking takes about a 20 chemical reactions, in splits seconds, all fascinating stuff, mainly to do with salts. So I can see a salt imbalance causing these extra beats. The mushrooms apparently are to 'help' cells and do not need to be anything other than 'normal' cheaply bought from supermarkets, but really work, I have only read this today, so looking into it more now

carrafibdietinfo.com/

Thank you again for replying

Marc7

greg35 profile image
greg35

Hi Marc thank you for replying and giving me some new advice that I will certainly take on board, I have seen 3 different EP/Cardiologists and I feel they do not want to step on anyone's toes so have basically said I have to put up with the ectopics, but I was also told that if the burden was too high you could end up with cariomyopathy, which frightend me. I do know some triggers sugar salt processed food exercise stress chinese food caffeine the list goes on! Also during my last ablation the EP advised me I had RBBB which corrected itself thankfully as he said if it had been left side of the heart I would have been left with heart failure! So he will not perform any more ablations at this stage! I think stress can be a factor as over the last few years I have lost 2 husbands due to cancer and then took cancer myself, so I know this has taken its toll on my heart health, I will start the mushroom regime as soon as I can and report back, best wishes Ingrid

Marc7 profile image
Marc7 in reply to greg35

Hi Ingrid,

So sorry to hear about the cancer taking 2 husbands and you also getting it, that is very sad indeed.

Cardiomyopathy with PACs seems to be quite rare from what I have read, but often occurs with PVCs, this was some small mercy in having PACs instead of PVCs at high burden I think!

Steven Carr clearly did a lot of research on his condition to get free of it without meds.

RBBB is sometimes permanent or exercise induced, but I have also read it can happen whilst having an ablation, then revert back to normal, glad it did for you.

Stress - I can definitely see how that causes more PACs, I've read about so many triggers and made all the adjustments, but found nothing made much difference

It is interesting that some people have had high burden PACs, that just cleared up on their own after a period of time, I've read some people's have cleared on their own after 2 years. That would seem to suggest a rouge heat cell generating eventually died or got back into line to allow NSR to revert. My concern is the high burden doing damage in the short or longer term

Best wishes

Marc7

greg35 profile image
greg35 in reply to Marc7

Hi Marc thankyou for your reply, the ectopics are controlled to a certain extent with the medications I would love to come off them but I don't think it's going to be possible I will try the alternative route with supplements and see how I go, best wishes Ingrid

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