First of all I hope you all managed to enjoy your Christmas.
I’m a persistent afiber
Previous history was 3 years ago my first attack which was followed by a cardioversion which lasted 6 days. 2nd cardioversion resulted in success for 7 months. I was then given an ablation which unfortunately resulted in me having a stroke during the procedure and landing up on a stroke unit. Luckily it wasn’t a serious or lasting problems. I next had a toe cardioversion which led for 18 months. I also suffer from mitral valve regurgitation
On 1 December I went back into Afib. I went into A &E as heart rate was high. Was put on Dijoxin to lower my heart rate.
I have bad side effects with dijoxin. I really struggle to breathe bi only need to walk about 5 steps where I am gasping. I can’t do anything without struggling to breathe. I have stopped taking dijoxin.
I received an email from my cardiologist who thinks maybe I should have a pacemaker. Obviously I can’t be in Afib so am on the waiting list for another toe cardioversion first. My question to members is what are the pros and cons of a pacemaker and those who have it was it a good idea.
My heart rate fluctuates daily from 98/150
Written by
Sally_Scott
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Sorry but I don't agree that you can't be in AF for a pacemaker. Lots of people have PMs fitted as part of pace and ablate where they fit a pacemaker and then some weeks later ablate the AV node so you are PM dependent. Some even find that once fitted the PM helps sufficiently that they do not need to go on to the AV node ablation.
I suspect some wires have been crossed here so suggests you have anpther word with your EP or cardiologist.
“i am sorry to hear you have gone back to AF. As well as the plan for cardioversion I think we also need to plan a pacemaker and AV node ablation.Yours sincerely”
So I assumed from that I was to have the toe cardioversion first.
OK as I suspected, a pace and ablate procedure but stress that cardioversion is for quality of life only and not necessary for the the pacemaker or AV node ablation.
The usual period of time between fitting of pacemaker and AV node ablation could be as little as six weeks so long as tests show that it is well embedded and working correctly. Then the AV node ( your heart's natural pacemaker) is ablated and whilst your left atrium may well want to carry on fibrillating, your left ventricle and therefor you heart rate will be controlled by the PM giving you a much better quality of life. It is a bit of a last resort obviously but plenty of people have this.
Hello Sally, Christmas was good thanks. I know very little about pacemakers so will be interested to read your replies. I can understand why you might be reluctant to have a second ablation and there maybe medical reasons why it might not be possible but what you experienced with the first one is very rare. It would be interesting to know if it has been discussed. If I am reading your question correctly, it looks like you have been in rhythm on an off for a lot of the time since your problems started 3 years ago. Under normal circumstances, this would suggest that an ablation is well worth considering but I don’t know if the mitral valve regurgitation is an issue here.
It will certainly be interesting to hear what others might have to say, but I wonder if this is something which would be worth seeking a professional second opinion.......good luck.
I went for PM revision to place aLV wire 2019 and I wasn’t in AF when the procedure began but as soon as the PM was disconnected, I went into AF immediately which continued to the end of the procedure. As soon as the PM was reconnected I was back in NSR.
You absolutely don’t need to be in NSR to have a PM implanted.
Only thing I would add is that the ablation of the AV node leaves you quite dependant upon the Pacemaker so not a decision to be taken lightly. What I found was that the PM worked so well for me that I cancelled the AV node ablation - doesn’t do so for everyone. My HR can still go up but my PM is set to only kick in when it falls below 60. The technology is now so sophisticated I really would research it and discuss with your specialist and be sure to ask what sort of PM they would fit and ask about the differences, advantages and disadvantages of each.
The implant procedure itself was a day procedure under nothing more that a local anaesthetic, procedure started at 2.00pm, home for dinner by 8pm.
PS - I never think about my heart these days, it was by far the best thing I did to improve QOL after being in very symptomatic AF on and off for best part of 14 years.
Hi sorry to hear your story , I was in constant high heart rate for a few years tried the cardio versions but didn’t last also had ablation with no luck , pills only kept me stable . I was I A fib when they sent me for a pacemaker in sept this year and 4 weeks later had an AV node ablation, I am now only on apixiban, my life is is so so much better now , I am 100 percent dependent on the pacemaker but it’s worth it if I continue to have this quality of life ...I’m walking about 7 to 8 miles a day now , I can go up a hill without stopping . It’s made my life worth living again ...I hope this helps you ....take care
Wow Betty you have inspired me with hope. I’ve been on Apixaban and Adizem for 3 years now but this dijoxin really creates more problems than it does good I think may I please ask your age and pre pacemaker did u suffer greatly with breathlessness? I can only walk few paces before gasping for air. I think I’m actually looking forward to having the pacemaker now if it improves my life as at present literally unable to do anything. How long ago did u have yours fitted and how long after having it done did your life improve? X
I was on Adizem for years and digoxin and they had given me amoniadrone as a pill in the pocket . I was terrible with breathless all the time . I could hardly walk the stairs in the house , it was so depressing me ...I’m 63 I had the pacemaker fitted in 2 nd of September 2020 and I had to stay on all meds until I got the AV node ablation, you might still see that you get an erratic heart rate once the pacemaker goes in , it was after the AV node ablation that changed my life ...off all tablets right away except apixiban ...4 weeks I waited as you can’t raise your arm much in case you pull the wires , you need to wait till they settle ..after 4 weeks I was walking a little each day ..6 weeks and I was away like an5 yr old ...ha ha ...I’ve had no problems at all . My first pacemaker check was in beginning dec all good to go ...I was like you , nervous, take care and I hope all goes as good as it did for me ...
Wow Betty I think we r heart twins lol. I refuse to take Amiodarone because of all the terrible things about the drug. It seems to be more negative than positive hence why I was given dijoxin which is not much better. I’m on flecanide as pill in pocket; but it never put me back in sinus rhythm. I keep assuming that because I have mitral valve regurgitation that it’s that that’s causing the extreme breathlessness but it’s probably a mixture of it all. R u in the uk under the nhs? If so how long were u on the waiting list for yr PM? I’m under East Sussex health care.
Your message has so filled me with hope for my quality of life for the future bin 72. Thank you for all your information xx
I didn’t wait long at all .I’m in the Scottish Borders .(Melrose ) I think it only a matter of of a couple of weeks .I have just been up and down the attic today .I couldn’t have done that before .I’m just in a happy place just now and very thankful for our NHS .x
I have had pace and ablate and it was the best thing I could have done for my condition. I was like you before but am now symptom free even though I have now gone into permanent a fib I can’t feel it at all. I just take Xarelto.
So you have permanent Afib even with a pacemaker in? I thought that would be a thing of the past. God I hope I don’t continue in permanent Afib after my pm😩
It took a few years before that happened, almost due for another one. The permanent a fib is nothing to be afraid of, because of the pacemaker you can’t feel it unlike previously when I used to collapse all over the place!
I’m not frightened of my Afib just fed up with it and want it gone! I had no idea that you cld go into Afib when u had pacemaker in. I thought the idea was for it to control your heart rhythm. No?
A pacemaker alone stops your heart going too slow or stopping. A pacemaker plus AV node ablation controls your ventricles so you have regular HB even though your atria are fibrillating - some people are aware of it and some aren’t but you don’t have the horrible AF symptoms 💜
Sally sorry to read about your situation I've never heard of a toe cardioversion what does that entail don't bother you self to reply until you feel much better my heart goes out to you
Hi Tom a toe cardioversion is Transosopicus echo cardio gram. Basically they put an ultrasound probe down yr throat so they can see if there’s any blood clots in the heart before cardioverting you. I had to have this as when I had an ablation I had a small stroke as a blood clot travelled to ,y brain during the procedure hence why not they do the TOE prior to make sure no blood clots.
Oh yes I've got you now Sally the abbreviations get me sometimes are these not carried out first before ablation it's sort of hard to make out in your reply at the end thank you for replying may you be well again
I have been given hope by your post and the answers to it. Because of the turn to the worse of my AF I have been given choices of what to do to remedy it. Amongst them is pace and ablate. All of the choices seem pretty drastic and especially this one. However on reading the posts it seems as though it is the best way to go as after years of drug taking my stomach is in a poor state and amiodarone seems to have dreadful side effects. I was at a loss as to what to do but this has given me some hope that there might still be a way to a better QOL after all. This group has been a life line to me and I can't thank you all enough for all the facts I have learnt from it.
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