I’m looking for reassurance, my friends. I am plagued by many palpitations these days, which my Kardia says are mostly SVEs, with a bit of Afib thrown in - unless of course Kardia is incorrect and they are all Afib ! I see a cardiologist annually and actually, because I complained of these palpitations earlier in the year, my GP referred me back to the cardiac team for an earlier appointment than was already booked for me. I had an echo which came back showing no discernible differences from the one 9 months earlier. The thing is, I am a worrier unless I understand something. That probably isn’t helping the ectopics, I know. However, the medics don’t seem to have taken onboard how frequent these palpitations are, ( GP saying, ‘oh everyone gets them’ -well I know that ! ) and therefore I am worried my ectopic ‘burden’ is doing me harm. I thought my best comfort ( or advice - or even warning ! ) would come from this forum, with all the collective experience you have of all things heart related. Do any of you have this problem and ignore it ? My afib is well controlled - unless, as I say, all my SVEs are actually Afib ! - and I am not suffering chest pain, breathlessness or feeling faint. I am managing to get on with things physically but notice the palpitations most when sitting quietly. I am on Warfarin and a hefty dose of Bisoprolol - 5 mgs morning and evening.
Thank you in anticipation of some words of reassurance.
Annie.
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They are not usually treated or in fact treatable unless very high burden. I had several months of a rolling program of every second, third, fourth , fifth etc to eleven and back to second beat. Got slightly irritating after a while but no doctor was concerned.
Then I came across Dr Gupta's slow deep breathing video and that was the last I saw of them.
Sit or lay confortably and relax your body from feet to fingers. Using your stomach NOT your shoulders breath in pulling your diaphragm down as far as you can counting slowly to ten. Then breath out slowly pushing your stomach up trying to squeeze it against your spine to a similar count. Repeat up to a maximum of six breaths a minute for at least five minutes or longer if you don't fall asleep. With practise you can get down much lower than six breaths a minute .
Wow Bob, that’s something I will do as soon as possible. Thanks very much for your prompt response. I read somewhere a while back about deep breathing, but they said to hold the breath for several counts before breathing out, and that seemed to make matters worse. I’ll do as you suggest….
Unlikely that Kardia is reading ectopics as afib, but the acid test is to show the actual Kardia tracing to an ep for confirmation. GP's and most cardiologists can't read an ekg better than a machine.
As to breathing exercises, can't hurt to try and it has helped some, however if only it was that easy! Just because some member found that they worked doesn't mean they work universally. My ectopics never responded to breathing exercises, but they did to alterations i exercise and also with Flecainide.
Thank you Jim. I know that some things work for some people and not others, and I think people here generally offer ‘possible’ solutions that have helped them personally. That’s what this forum is about . And when we are miserable with our condition, we are jolly glad of the slightest idea that we can try. I dont find any of the common triggers affect my afib or ectopics, and after days without a glass of wine, I thought damn it - I’m going to have a glass ! A while later I went to bed, checked my Kardia and got a NSR reading 🙄.
In the early years, despite my Afib being well controlled with medication, ectopics did trouble me. I suffered badly from ‘ectopic storms’, which drove me ‘mad’, robbing me of rest for weeks on end. Anxiety just enforced a negative feedback loop that descended into more ectopics. At times, they occurred every other beat and sometimes I thought, can my heart cope with this. They were investigated by my cardiologist, the burden was actually not that high in reality and he wasn’t overly concerned but it was affecting my QoL. In his opinion, the anxiety was the driving catalyst. I turned to a course of cognitive behaviour therapy and for a period, an evening sedative. This worked for me, it broke the cycle and it all settled down.
If you don’t have a solution then I wouldn’t rule CBT out. Admittedly, I was always a bit sceptical about the whole area - talking therapies/mindfulness but it did help; don’t ask me how though 😀 The sessions covered how to spot unhelpful patterns of thoughts, feelings and behaviours and techniques on how to deal with them.
I still have ectopics, even runs of them but they don’t bother me the same. I can rationalise myself out of the anxiety. Basically - Ok, ignore it, breathe in, carry on (or in bed rollover), my heart is not going to stop. It just breaks the cycle of catastrophic thinking (especially at night ) which descends into anxiety and promotes more ectopics and storms. Yes, there was the sedative for a few months initially but that was a number years ago now and I’m still coping. Copings, not the right word …. Just getting on with it!
I am a fan of the Kardiamobile 6L and I have usually found the device’s determination to be accurate where Afib is concerned. That said, my episodes have been very distinct too - high, irregular HR with RVR causing the familiar chest flutterings and trembling; no other symptoms. I really don’t need a Kardia reading to know I am having an episode.
Through experiment and observation you can see ectopics with it (on the trace), although the device doesn’t have a default determination for them. I found though, if you have enough ectopics in a 30 sec trace, it does flag possible Afib. I have no medical training but with a bit of research, the various wave profiles can be found and its possible distinguish what is going. In the early days, I just found this reassuring.
I only use the Kardiamobile occasionally now, as control, just to check, especially if I feel any different and its always NSR.
Thank you very much for this long and considered reply. I think I depend too much on my Kardia, although it is really to try to understand what’s going on or if my condition is changing. I suppose many people would say that if I am managing my everyday life, then I should be grateful. It really is the ‘wondering’ that gets me - whether my heart can cope etc. of course many people are in permanent Afib and THEY cope, so should I. I think I got confused when using my Kardia in the two different ways. Last year I was getting so many Unclassified by using two fingers on the Kardia on the back of my phone that I swapped to using it on my left knee ( as mentioned in the manual ). This with the old original Kardia. I then started getting SVEs instead of the Unclassifieds. After time, I got more NSRs than other readings for a while, but this year, back to SVEs and Afib - depending on how I use the Kardia. I have sent some to be analysed by the Alivcor cardiologist and a couple of Afib readings came back a different arrhythmia and one SVE came back NSR. Your comments are helpful, and it is always a comfort to hear of someone who has suffered in the same way and has ‘come through’, so thank you, and I hope you continue to keep your arrhythmia manageable.
I've had ventricular and atrial ectopics for nearly 40 years. Sometimes just a few a day (easy to cope with) but much worse over the last 18 months so now can get hundreds or occasionally a few thousand a day. Also have had the odd bout of a supra ventricular tachycardia with my heart going around 200bpm. They really scare me and I don't like the bigeminy either. I can't give any surefire advice... wish I could as these definitely affect my quality of life. I've given up everything! I exercise. Tried taking bisoprolol, which seemed to help initially, but then became ineffective even with an increased dose. Am currently trying hypnotherapy so will let you know on that.I take encouragement from the people on here who tell their stories and, who knows, someone may have tried something that works for you.
Thank you for responding Evaluna. Even though no one has a magic wand for our varying arrhythmias, the knowledge that we are not alone with our experiences is a comfort. So many people on this forum go through ‘rough’ patches, then they come out the other end feeling better, with either time, medication or a tweak to their lifestyle. It’s these messages that keep us going when we are feeling down. I hope the hypnotherapy works for you - perhaps someone will see your post and write - “ hey, that really did work for me ! ‘, and you will be encouraged. Good luck.
I have also been suffering from ectopics, sometimes 15-20 % burden for days. I will be straight but pls bear in mind this is just my experience and I have no medical credentials. So, your EP must be the ultimate judge.
-As I see it, your ectopics do not have bad symptoms and this is awesome, so why not try to forget about them and do what your doctor wants you to do.
- When I have many ectopics, I feel awful and Kardia says not in Afib and no matter how I am oversensitive I know/trust it is not Afib and Kardia is correct and Afibwise I am reassured. I see no reason to be in Afib when Kardia says otherwise, plus as someone who suffered Afib I would know it when Afib kicks in, I am sure you would also know without a doubt.
- Why ectopics? Many mention many reasons but as I see it, the underlaying mechanism is so complex yet unknown. My personal experience is that ectopics cannot easily be prevented/ controlled with mental conditioning. I had my worst episodes in days I was at my best mood. I had episodes after 2-3 months with no reason, while still on the best diet, slim, exercising, best mood, etc. I am not even talking about that I am tobacco-alcohol free...Under these circumstances it is hard to reassure oneself and let ectopics torture you over and over. I believe the matter needs another fundamental solution.
- When it comes to dealing with ectopics. Majority of the specialists say they are benign, so forget about them and have a life, they would say. On the other hand, some others say, ectopics will eventually lead to Afib, if they do not structurally harm your heart in the meantime. I guess, beyond looking for a reassurance the idea would be sticking with one of these schools of thought and doing what is necessary.
- Here in the US, it appears to me that EPs easily recommend a second ablation if the patient cannot deal with ectopics physically and mentally. The primary objective being increasing the quality of life. I will have a repeat ablation in a few months (you may see I am following the second way). That said, I was so much reluctant to have a repeat ablation, but my ectopic burden is high with symptoms and I am not good at dealing with it. It took me almost a year to convince myself for a repeat ablatio, in the meantime, I spent much time trying to reassure myself.
- I am in no way saying that you should have an ablation too. My point is that, for me, playing the reassurance game was not effective. Moreover, as I see it, reassurance game is not one you can win, unless addressing the root causes of the problems. These causes can be indeed physical or psychological/cognitive as someone mentioned.
- If my experience resonates with you, you may try to think over your afib journey, reach a preliminary conclusion and act, rather than trying to find reassurances. If it is not resonating with you, you may see this just as a sigh of another suffering soul
I wish you best of health and pls do not forget to mainly leave this matter to a "good" EP, if you do not have a good EP then I would say try to find one. Best.
Thank you LonelyTraveller. You are right, on many levels. Of course whilst feeling ‘down’ we all grasp at any straws in the hope that one will help. I think that when feeling my worst, I would even try chanting at the moon or asking the ravens for help ! I am hoping to get an appointment with my GP soon, as he has been given instructions to change my Bisoprolol to Solatol if my condition deteriorates ( as my Biso is maximum dose now ) so the slight difference in the beta blocker might help. I haven’t had an ablation, as I am mostly asymptomatic. It’s just that if these ectopics are in fact Afib, then my condition is worsening. However, as my Echo in March showed no change in heart structure from last year, I think any medic is going to tell me to go home and stop fussing ! I hope your upcoming ablation releases you from your heart problems.
Hi annie, I saw a cardiologist yesterday regarding my ectopics that I get, I explained that I can get them for up to 2 weeks solid, with up to 4 every minute maximum.!but mainly averaging 2 every minute. I showed him my cardialive ECG print offs too which he looked at and said oh yes they are ectopic beats but let’s talk about your AFIB as these ectopics nothing to worry about.!😳
Iv had them for over 30 years annie and am still here to tell the tale.👍 try not to worry too much about them easier said than done I know.??
They actually cause me more anxiety than my afib to be honest and I hate them, but very very rarely are they dangerous, and Iv seen a good amount of cardiologists over the years who have all told me the same . I also remember the EP who did my ablations for AFIB saying ectopic beats are nothing to be concerned about even though they can cause you alarm and anxiety.!
I hope they settle down for you Annie, I’m sure they will. I get weeks without a single missed beat then out of nowhere I get them every day and just cannot work out why.?
Thanks so much Ron ! I am wondering if a lot of these ectopics are in fact my afib. But as I’m on Warfarin, I suppose the best is being done for them whatever they are. At least the Bisoprolol stop the rate increasing, which I think is the most important thing. Your post is reassuring - I’m glad you are still here ! 👍
I’m starting back on anticoagulants too shortly which is good because I was deemed as not needing them for last 3 years, but I’d rather be on anticoagulants than have a stroke.? 👍
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