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Ectopics / AF

karl1524 profile image
24 Replies

Hi all, as well as having Afib i also suffer from ectopics, i had a very bad episode yesterday that lasted for about 3 hours where the ectopics were so frequent (at least every other beat) and stronger than usual that i am unsure if it was not afib at some point, i took 50mg of flec and it calmed it to a level that i could get to work and function again, i also had the usual insatiable thirst and need to urinate every 5 mins that i always get when they are this bad, it was not caused by dehydration but i had been operating on less sleep than usual so this could have been a trigger, my question is how do we differentiate between afib and ectopics when they are this bad and with the exception of breathing exercises and magnesium (which didnt help), any tips on dealing with this issue?

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BobD profile image
BobDVolunteer

Ectopics are quite different from AF when seen on an ecg but I do know that it can be difficult to decide what they are when you are stressed out by them. Just because ectopics can be frequent does not make them become AF which is important to understand and remember. I once heard a GP ask an EP at a conference when did groups of ectopics become AF so even the supposedly educated don't always understand this.

karl1524 profile image
karl1524 in reply to BobD

Thanks for reply Bob, i am going to get an Alivecor i think as due to the fact that I always know when I am in AF my EP and cardiologist have recommended no anticoags, so i think that it is important for me to know whether its afib or ectopics on these ocasions - cheers

baba profile image
baba in reply to karl1524

I don't understand their reasoning​ re anticoagulants​. I know when I'm in AF, if awake, and on anticoagulants.​

BobD profile image
BobDVolunteer in reply to karl1524

Slightly puzzled re anticoagulants. If you have a CHADSVASC score which says anticoagulate then how much or how little AF you have does not come into it. I do hope your score is zero!

karl1524 profile image
karl1524 in reply to BobD

Hi my score is 1 based on high BP (controlled), they explained it to me that i have only had 2 x sustained episodes of AF (although had many that only last 10 seconds or less) and on both ocasions i have known i was i AF and presented myself at A&E therefore they are not concerned that i could be in a state of AF that lasts long enough for a clot to form without me being aware enough to present myself back in A&E within an couple of hours of realising that flec hasnt converted me back to SR, i assume that i would then be jabbed with heparin if it lasted longer than desired??

in reply to karl1524

Af is af regardless of duration of episodes I wonder at the wisdom regarding anticoagulants

karl1524 profile image
karl1524 in reply to

Hi, not sure where to go with this as i specifically asked my EP and am working from his advice, although i have another appointment in a month so will stress the point again - thanks for reply

in reply to karl1524

Have you looked at the CHADS risk score ? Have you read info on AF website? Good luck with EP but arm yourself with knowledge before

karl1524 profile image
karl1524 in reply to

Yes looked at Chads and read AF website but thought that EP would offer the best advice, i will labour the point again with him and GP as I am also consious that there is a balancing act between the risk of not taking anticoags and also the risk of doing so - thanks again for reply

in reply to karl1524

Your welcom

Finvola profile image
Finvola

Ectopics are such a pain, so I sympathise. I can almost always stop them with slow, deep breathing but on a few occasions, mild exertion has also stopped them.

A couple of things struck me from your post - Flecainide makes no difference to my ectopics - I take 200mg daily - and I read somewhere (perhaps Dr Mandrola??) that Flec usually doesn't help. Secondly, the weeing in gallons is usually a sign of AF, so you may have had both ectopics and runs of AF and the Flec may have hit the AF, leaving the ectopics behind.

The only way I can tell for sure the difference between bad ectopics and AF is by taking a reading with my Kardia. Heart rate is also a clue for me as my AF was always very fast.

karl1524 profile image
karl1524 in reply to Finvola

Hi thanks for reply, i have only ever taken 50mg flec tablets on a handful of ocasions, they were perscribed by my EP for dealing with the ectopics, they do seem to make a difference but do not completely stop them, i always have ectopics to some degree but a few times a year they will be very forcefull and frequent it feels like someone is slamming a car door in my chest 😂, maybe they are AF when this bad but my AF is also always fast 120-190 bpm and these ectopics range from 60-80bpm (my resting rate is always mid 50's) so unsure, think its time to buy a Kardia also - thanks 😀

Jhcoop55 profile image
Jhcoop55 in reply to Finvola

Disagree 100 percent. I suffered from severe ectopic 3 months following my second ablation after I,went off Flec. While I have zero signs of AFib , thankfully, after going back on low 50 mg Flec 2x per day, the ectopic have gone away. Hoping to get off Flec in the coming months but t has been a godsend in dealing with my ectopics. May not work the same for everyone, but Flec worked for me. I wouldn't dismiss this drug as being unhelpful for ectopics. Of course, all AF patients should consult with their doctor

greg35 profile image
greg35 in reply to Jhcoop55

Hi did you have the ablation for ectopics everyone seems to have AF which I dont think I have, I had my 2nd ablation almost 3 weeks ago and see no change I have ectopics every 3/4 beats when moving if i lie down they mostly go away, bought an Alivcor and sending reports to EP, I think it would be more useful for a 24 record as this only shows up to 5 mins! I am on Verapamil maybe need to look at changing to Flec to see if that helps, glad to hear the ectopics have gone msybe this will just take time.

karl1524 profile image
karl1524 in reply to greg35

Hi no i had the ablation for AF but my ectopics have been worse since, i have good times when i can have upto 6 months with only minor blips each day then i will have a terrible day of them which seems to aggrevate my heart and i can have a bad few months following, i cant seem to find a pattern, thanks for reply

Jhcoop55 profile image
Jhcoop55 in reply to greg35

I also had my ablation, both times for AF. I never had any signs of significant/noticeable ectopics prior to my ablation. My severe ectopics arose following my second RF ablation (Cryo first time around). Although even "healthy" patients have ectopics to some extent, they just aren't noticeable. Unfortunately, one of the side effects of an ablation (even with a positive AF outcome) is a more severe case of ectopics. Sometimes they last a few weeks, sometimes a few months, and sometimes (unfortunately) a lifetime. I hope I'm not in the latter group but need to prepare for that possibility. But for now, Flec along with a low dose beta blocker completely keeps it quiet. (Breathing exercises or Magnesium provided zero relief for me). Whatever ectopics I experience now while on Flec are "below the surface", not noticeable and have no impact on my QOL Of course Flec is a powerful drug even at modest levels but fortunately I experience zero side effects from it. Some EPs will be hesitant to even prescribe it unless there is also associated AF. That being said, I will try to wean myself off in a few months and see if the ectopics stabilize without meds. If not, I'll stay on the drug and try again to wean off in the future .

As a separate note for anyone considering an ablation: while the procedure is relatively safe with a very low mortality rate and a positive AF outcome for many, make sure you do your research. There are many different side effects that EPs often don't fully discuss, some which may last a very long time even if the AF solved. It's not uncommon to experience severe ectopics post ablation, but I was never told that. Quite frankly, the 24/7 ectopic side effect was almost worse than the AF episodes which occurred only periodically. I'm fit, slender, don't drink, exercise, Good BP, low cholesterol, low sugar levels, Chad-vas score of zero and have zero heart disease, but yet I experiance many of the side effects that others do post ablation. Go figure

Finally, many on this site have had multiple ablations like me for AF, some as many as six! Hope mine holds for a long time, but I also know that this ends up not being a long term solution for some .

Sorry for the long dialog but it's a journey that always seems to have many twists and turns. Good luck on managing the ectopics and may you remain AF free

karl1524 profile image
karl1524 in reply to Jhcoop55

Thanks for reply, very informative, i am meeting with my cardiologist soon so going to run through this with him, in the meantime i think that i will have to be less if a stranger to fleconaide, glad yours in under control, wish you well with it moving forwards

CVSKL profile image
CVSKL in reply to greg35

Hai..I'm new here and post ablation pacs ectopic 3 weeks ago..but on 3rd day my ectopic come back with full force bigeminy pattern..your ablation mainly for ectopic ad well? What medition do u take for ectopic now? Many thanks and feeling sad

karl1524 profile image
karl1524 in reply to Jhcoop55

Thanks for reply, may have to look at regular flec if this continues - cheers

Nanfranz profile image
Nanfranz

I confess I'm confused. For many years I had occasional, sometimes frequent, palpitations and PVCs, especially when under stress, but was told that they were not considered anything to worry about. Then after a particularly bad episode, followed by ECG and wearing a monitor several times (a different kind each time) I was told I have Paroxysmal A-Fib and a year ago the cardiologist put me on Flecainide, Metoprolol, and Xarelto. At one point he said that the palpitations and PVCs were all a part of A-Fib. Until now, I hadn't heard the term "ectopics" but I get the impression that ectopics are palpitations and PVCs. Is that right?

I take 50mg Flecainide twice a day, and am finding that when approaching the time for the next Flec pill I usually get some brief palpitations or PVCs, which I have been assuming are A-Fib and a sign that it's time for the next Flecainide. Which makes me wonder if I now have Persistent A-Fib which springs into action as soon as the effect of the med has worn off. But now, having read on this site that ectopics are separate from A-Fib I'm confused about all this. I realize I need to speak to the cardiologist about this, but if anyone here has any comments I would so appreciate hearing them.

Thanks to all who contribute to this extremely helpful forum!

Finvola profile image
Finvola in reply to Nanfranz

Ectopics are 'out of place' beats originating in the atria (PAC's) or the ventricles (PVC's) and feel like a skipped beat followed by a great thump but the heart is considered to be in normal sinus rhythm.

Everyone gets them but people with rhythm disorders notice them more and can be everything from a mild nuisance to causing breathlessness and fatigue.

Many people's episodes of AF start with a PAC, which is why I always feel tense when they start but they are usually considered to be harmless.

Dr Gupta has made some excellent videos explaining ectopics and their effects. If you use the search box at the top right of this page with 'Gupta ectopics', it should bring up Steve's links to them, together with comments.

karl1524 profile image
karl1524 in reply to Finvola

Thanks Finvola,

I have seen Dr Gupta a couple of times and had a stress echo carried out by him a couple of months ago in York, which reassuringly was perfect, I have watched the majority of his videos and understand that these are not life threatening, but they keep me awake as they are positional which causes the vicious circle of lack of sleep / increased ectopics, i am booked back in to see Dr Gupta shortly as they seem to have gone into overdrive lately so would like a reveal device if he agrees that it is appropriate, i have recently started going to the gym with my son who is a personal trainer in the attempt to lose a stone which would bring me to my ideal weight and hopefully may help with BP and ectopics / AF, maybe its the gym that has kicked them off, who knows.....just miss the old days when i didnt have them and didnt have to constantly analyse everything i do / eat / drink for potential triggers 😀, thanks again for taking the time to reply

greg35 profile image
greg35 in reply to karl1524

Hi Karl I too started to have uncontrolled ectopics after going to a personal trainer last April I had started to think that this was the trigger although I have always had a problem with ectopics this time I had them permanently, I have never been given a diagnoses but I presumed that they would just disappear after the ablation, how wrong was that! So now I dont know if the ablation worked as the ectopics are just as bad I dont have AF although for years I did have probems with a racing heart and was given propananol which seemed to help, I am on Verapamil so cant take beta blocker while taking the Verapamil. I too struggle with eating trying to stay away from trigger foods, sugar caffine wheat curries! not sure if it has msde any real difference though! Is it true that any more than 3000 ectopics can be dangerous I literally have thousands per day! Glad your AF is now controlled.

karl1524 profile image
karl1524 in reply to greg35

Hi Greg, thanks for reply, sorry to hear that you also suffer, our issues sound very similar, when i had my ablation i had only ever had 1 episode of AF but had suffered from ectopics for a few years, i had never been put on any drug therapy yet my EP at the time advised a RF PVI ablation, i wish i had known more at the time to question this but it was described to me as a cure, yet here i am years later with much worse ectopics and still the infrequent AF episodes, i wouldnt overly worry about 3000 ectopics as i have read that you can have many more, that said i know first hand how disturbing they can be, i hope that you gain control of them, and have a good quality of life - take care - Karl

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