Hi. Newly joined this forum and have been reading some of the discussion topics on cardiac arrhythmia with interest. My own 'tale of woe': been suffering from atrial ectopics since 1973, which came and went over the years. 'Upgraded' to A.Fib. around 1996, temporarily alleviated by cardioversion several times, and ultimately relieved by propafenone (ectopics largely suppressed also) and returned in Aug. 2001. Started on Atenolol 100 mg daily; had catheter ablation in Dec. 2001 which seemed to fix the A.Fib. but not the ectopics which came and went over ensuing years. They came back with avengeance two years ago, accompanied by occasional atrial tachycardia, and I've been trying to cope with them ever since. Cardiologist prescribed - in addition to the Atenolol - Flecainide, which I increased in steps as advised; now on 200 mg per day but unsure whether stepping up to the max. advised dose of 300 mg would help, as ectopics seem to have broken through again, following a period of absence from them - so I was gutted when they returned. They're here with me now. A by-product of all this is anxiety, which in turn acts as a catalyist that help sustain the ectopics so I'm hoping that a Sertralene prescription, which I start tomorrow (6th March '17) will help to address the anxiety, which has been simply wretched for me on top of everything else.
I wonder if anyone has info. regarding availability of catheter ablation procedures for ectopics (as opposed to A.Fib.) As far as I can tell, there's only about 2 hospitals in the UK (Birmingham and London) where this type of surgery is offered, which rather puzzles me, given the huge numbers of people out there who are suffering this horrible type of arrhythmia. My cardiologist in Glasgow Royal Infirmary does plenty ablations each year but he said they 'don't do' ablation of ectopics in his hospital. Ablation for A.Fib. seems almost routine these days but the question of ablation for ectopics seems to be hardly touched upon. Would appreciate what anyone else's take on this would be. Good wishes to everyone reading this.
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hebrides2
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Hi well we are a friendly much and help as much as we can. Not medically of course but a wealth of personal experiences. Assume you've looked on AF association website? If not worth a look
I am sorry I don't know the answer to your question however I will say that I suffer from atrial tachyarrythmias on a daily basis. I also go through periods of a lot of ectopics I can feel and I find ectopics equally as distressing as full blown AF and SVT. I really hope you get sorted. If you watch Dr. Sanjay Gupta on YouTube he describes some breathing exercises which help some people with ectopics. Best wishes
Thank you for your kind response. Like yourself, I find Sanjay Gupta's YouTube videos reassuring - what a wonderful, caring person he is; wish there were more like him. Best wishes
Oh he is such a wonderful doctor. You can tell he really listens to his patients about their symptoms and the physical and emotional impact these have. Best wishes and I hope the ectopics decrease as I am sure they will. I went through a period of torture with them and thought life would never improve but it did.
Hi I'm in a similar position re ectopics. I had an ablation a couple of years ago which has significantly helped with my AF, but has still left me with lots of ectopics. Whilst ectopics are generally accepted as not life threatening, they are definitely life inhibiting, and I have suffered anxiety just as you mention. In my experience, the view from the medical profession is mixed on this. It undoubtedly lags behind AF in terms of attention ( although we are thankful for Sanjay Gupta's attention to the subject), perhaps for the obvious reason that it doesn't generally carry the same risks as AF, and can elicit a less than helpful response i.e. " you have to live with it" I have to say that Bisoprolol and Flecainide which have both been prescribed for me, haven't really helped that much, and, to date, vitamin supplements and being careful with my diet haven't really done the trick either. I do feel that practising relaxation techniques, breathing exercises, etc can be a significant help with the anxiety, but the ectopics are still there! My cardiologists have veered between disinterest, and varying levels of sympathy, but my EP has offered to undertake a second ablation to see if that would help. This is in Sussex, so not London or Birmingham, but crucially this would be a private procedure not on the NHS. His view was that there was a chance he could do something, but it would be reliant on ectopic activity at the point of the ablation, and the condition isn't constant for me. He also said it would never be an exact science to get rid of ectopics, so definitely no guarantee. At the moment, I am monitoring the pros and cons, and this varies according to how I feel, as I do get some good stretches without much activity followed by periods of misery. I'm sorry I can't be of much help, other than to compare notes, but I hope that people like us can raise the profile of ectopics as a condition which deserves a lot more focus. All best wishes.
Hi there! Thank you so much for taking the time and trouble to send such a detailed response - greatly appreciated. The bottom line is that, given the vagueness of treatment strategies and the diversity of advice, we simply have to enjoy the 'better' times and do our best during the 'not so good' times. I find that Sanjay Gupta's YouTube videos are helpful as morale boosters, and I often have recourse to them.
I was diagnosed as having AF just over two years ago after a miserable previous year of trying to get someone interested enough to take it seriously.
I ended up taking a fast ride in an ambulance and it was found that I had serious heart failure as well.
I had all the usual tests and was put on Ramipril and Nebivolol as well as a diuretic.
I bought an Alivecor device and did my my own checks because I have very little faith in the medical profession.
After six months of taking a reading twice a day I was able to conclude that I had very few AF episodes but constant ectopics - around 30%.
I saw an EP (Teesside area) who said that he agreed with me (surprise!) and that, after more tests, he was sure that the ectopics were generated in the right ventricle and that he could ablate them.
I got a phone call to say that they had had a cancellation and I could be seen the next day if I was OK with that. I accepted.
I arrived at the hospital but when the EP came to see me we decided that we should not go ahead with the procedure. This was because I have arthritis - which prevents me from lying flat or staying in one position for long. I also have reflux so cannot lie flat anyway as it causes me to choke.
He said that I could come back at a later date and he could do it under a GA but - and it's a BIG but - he had tried this before and it had not worked because the anaesthetic made the ectopics stop and there was nothing to ablate when he had spent a couple of hours getting in there!
So there are EP's other than in the major cities who will do this procedure.
I use Sanjay's breathing method and that usually helps and I read a post on here about taking iodine recently so had a good look at that and I started five days ago on one or two drops a day in water. No side effects so far - but after three days a noticeable drop in ectopics. This is significant for me because I rarely have a break from the ectopics - so it is likely to be the iodine that has made the difference, but I'm cautious by nature so will see what happens over the next few weeks and months.
George - appreciate your own personal tale. Many thanks for posting and look forward to how you're getting along in the course of the months ahead. Regards, Donald (aka hebrides2)
I have spells of about 4 or 5 days of ectopics that seem to go on all day. I now know they are anxiety related and so the breathing has helped and also CBT for Generalised anxiety has helped too. Very interesting about the iodine but think as someone with an underactive thyroid it wouldn't be advised. Hope you find some answers . Best wishes Kath.
It's so good to have all these inputs and suggestions from other sufferers. I'm convinced that anxiety plays a major role in the maintenance of my own ectopic experiences and am about to embark on a course of Sertraline in the hope that this may help me cope better. Best wishes Donald - aka hebrides2
I suffer a lot of from ectopics post ablation. I am struggling to deal with them at this moment in time, pretty sure l did not have them prior to the ablation. Trying decaf tea and coffee to see if this helps?
I have read all your replies but as yet it is not clear to me what the frequency of ectopics are for each person that has replied. I would be grateful of some understanding ,as an ectopic sufferer myself, of how frequent you and other sufferers have the ectopics.
Rather like asking 'how long is a piece of string'!!! The experiences of sufferers are very varied and some people report of several thousand per day - right down to a few. There were times when i'd have one every five or so minutes, and then they would disappear - sometimes for months - but re-surface again. These days I have a few each day but they keep me in perpetual unease/anxiety because of their random onset, (i.e., waiting for the next one) and I find it's difficult to relax. Am starting on Sertraline (an anti-anxiety drug) but will continue my quest for a solution to eliminate these horrible things altogether. Regards.
I was interested as I was diagnosed with AF some 17 years ago for which I was prescribed rhythm drugs that were initially successful . However as my AF increased the drug became less effective and so I had a PVI some 7 years ago. This was pretty successful but has left me with ectopics and occasional short bursts of AF.
I am able to tolerate the ectopics reasonably well and take a PIP approach , carrying some pills in my pocket and take them as and when I consider I need them.
My consultant who I had not seen for some 2 years (3 months ago) asked me if I had considered a 2nd ablation and would be willing to carry one out. Following 48hr ECG and heart scan he felt that if I could tolerate the condition then there was no need to have the 2nd ablation as the ectopics were someway below 1% of the total recordings ( around 600/day) and my heart structure was fine. I considered that the time on the ECG was average in ectopics. ie I don't get time off like you stated you have.
Anxiety can contribute to my ectopics and if you feel that taking anti anxiety drugs to provide some relief then the ectopics may also reduce.
I suppose what I am trying to say is that acceptance of the condition for me has enabled me to reduce my anxiety and the ectopics have been less noticeable (reduced). However the acceptance has come only over a number of years. As my consultant is comfortable with structure of my heart his confidence gives me the reassurance I need.
It is a difficult , sometimes very lonely, journey for us all.
Thank you for your detailed response, Jumper. The key to minimizing the distress definitely lies with the way of reacting to the symptoms, and learning to accept them, given that they're probably going to be around permanently to some extent. This is harder than it seems (The advice 'don't worry' is a bit of a cliche!) My echocardiogram indicates that the structure of my heart is completely sound - so 'why worry'??? - but I still do; hoping that the Sertraline will help to take the edge off this. Best regards.
My ectopics are around 600/day ie less than 1%. My EP who I say some 3 months ago was willing to carry out a 2nd ablation for me but considered that after the latest tests, 48hr halter and scan, that if I could tolerate it then there was no clinical need as the structure of my heart was OK.
My consultant has said in the past that he would consider 25% as a point when he would push the client for an ablation on the basis of need. This due to the long term effects on the structure of the heart. Have you considered seeing an EP for an opinion about your case?
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Ectopic Beats Post Ablation
Ectopics after Ablation
