we’ll, after a year post my last ablation, having had very little in the way of AF, it is back with avengance unfortunately. Started Thursday with increased PVCs and SVEs which developed into AF and then tachycardia/flutter at 140 bpm. I rang arrhythmia nurse who said to increase my sotalol and monitor till Monday but I am still in AF/flutter or whatever it is ( Saturday).
Looks like pace and ablate is on the horizon for me as I know I can’t have another ablation. I guess I always knew this was on the cards but had allowed myself to start looking forward with some hope so I’m feeling very down and exhausted right now. Also I am concerned because I know waiting lists are impossible now and I can’t see how I can keep going with a heart rate of 140.
I’m not really seeking advice although if you have any, please be forthcoming! I just wanted to off load to people that understand.
Jane x
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So sorry to hear this news of yours Jane. AF really is a hateful thing and I feel for you. Sotalol did nothing for me, though my EP preferred it to Flecainide.
Thanks Jeannie, I have had flecanide and sotalol. Both worked but flec caused problems and sotolol stopped working. Only other thing is Amiodorone which Zi have managed to dodge so far. As it will be long term I think zi prefer the pace and ablate option. With my sensible head on I already know the answers but my sensible head has disappeared for now I’m afraid. X
Hi Jane, Sorry to hear your news. We had our ablation around the same time. I was put on Amiodarone (as you probably know) after my ablation for about 10 weeks to "give my heart a rest" (cardiologist decision) as my heart was beetling along between 140 and 160 bpm . It might be an option for you in the short term while you wait to see someone about what to do next? I really hope you can see someone soon and a solution can be found to help you. Pace and ablate has certainly seemed to help many and there is also the Wolf mini maze.
Things are much better thanks. I am now off the meds. Amiodarone was an enormous help. I am under no allusion that it is a respite from Afib - that I hope will last for a long time 🙂 But ablation techniques are improving all the time so maybe a magic bullet is out there for you. Let me know how things go for you and I am crossing fingers and toes that this gets sorted for you.
I am sorry to hear that it has come back. I had my second ablation last year and I am dreading it coming back. I hope you make the right decision on your next move and I am thinking about you 😊
It's not good to stay in heart rate 140 long term as you know. Is dccv not an option? Wouldn't Amiodarone be ok whilst waiting for pace / ablate. There wouldn't normally be such a wait for pacemaker as for an ablation.
Thank you. I have got to phone my arrhythmia nurse back on Monday with an update and she will then inform my consultant and I guess I will do what ever he advises. Fingers crossed that you are right about the waiting list. X
Wow. That must have been scarey. I know amiodorone does have its good uses. My friend has been on it for quite a while with no side effects. I am particularly nervous of it as some of the side effects are related to medical conditions in my family history but I would be prepared to take it short term if necessary. Hope you get your ablation soon, x
Hi, sorry you have such a disappointment. But don’t give up hope! My GP referred me to the rapid access chest pain clinic because I was having weird episodes of breathlessness with a long episode of AF. The cardiologist I saw told me flatly that I was now in permanent AF (‘this is what happens’) and needed to increase all my meds and add bisoprolol as well. As I was suffering from a bad bowel inflammation at the time I didn’t believe him - the next day my rate was back to under 100 and I have had a week of ‘unclassified’ followed by AF again, followed by ‘unclassified’ again - the first time I had constant ectopics but this feels like NSR which is good enough for me. Also my rate has varied wildly from 80 bpm to 160 so I wonder if the 140 is constant? Hopefully not.
I hope things are looking brighter by Monday, best wishes 🍀❤️🩹
Thanks so much for your reply Buffafly. It helps a lot to chat to people that understand.
Since my post I am having around 5 hours in tachycardia at 140bpm and then for the rest of the time am flipping in and out of fast/slow AF with some periods of ZNSR so I am getting a bit of respite. X
Such distressing news. I know completely how badly you feel. This afib is a monster. You did what you needed to do and tried everything. I pray you can get your pace and ablate without delay. Surely with your HR this high you have some priority? Keep me posted and PM me whenever you feel the need. I’m here for you.
I’m so sorry to hear this. The worst is the waiting to be seen again, especially with such a high rate. I’m in a similar position, with no more ablations on offer, but I’m lucky in that the rate is under control with Bisoprolol.
They might be able to advise that you take a rate control medication in addition to the rhythm control you are on. Rhythm control drugs just didn’t work for me - although I was only ever prescribed dronedarone then Flecainide.
Anyway, I’m on a reasonably even keel for now, despite the AFib, though I was devastated when told that there would be no more attempts to restore NSR. (Even if they did a cardioversion, I was told I would need years on Amiodarone, due to the extent of fibrosis found. A big shock, as just last year I was in NSR for three weeks of each month.)
Once over the shock of it all, it dawned on me after about 4-5 months that I wasn’t really that bad and could get on with life. So there is life after being consigned to ‘rate control only’. Though if that rate can’t be controlled, there is the back-up of pace and ablate.
Since my original post I have been in and out of NSR/ slow AF/Fast AF and Tachycardia! At least the 140 bpm is not constant it typically last for 5 hours.
My dose of sotalol is an anti Arrhythmic and beta blocker combined. I can’t have a high dose of beta blocker due to a heart block.
You are right that the worst part is the waiting to be given a plan. I can usually begin to cope when I know what to expect otherwise my imagination and What if mentality, takes over.
I hope you continue to be ok with your plan. Personally, I don’t have a problem with pace and ablate as long as all other options have been explored.
That’s more difficult with your heart block. For myself, I would definitely go for the pace and ablate if the EP thinks it necessary. Though it’s looking like 5mg of Bisoprolol is keeping me ok, with an average rate over the day in the 80s.
Part of me was hoping to be offered that route, to come off the medication, but I’ve realised that I’m quite lucky to be steady on the beta-blocker.
Best of luck with getting it sorted, and let us know how you get on.
They will find a way to bring the rate down. With me it took digoxin, which worked well. I wasn't able to take flecainide or sotalol owing to their effect on the heart's timing.
You probably have AF rather than atrial flutter, but both can cause racing. It's that which must be controlled to save wear on the ventricles, not the atrial activity, which is pretty benign, thankfully.
Have you asked about being given Dronedarone - Flecainide stopped working for me and although it doesnt work as well -it keeps heart rate down and in synch most of the time - few side effects - there is also Propafenone which I have never tried ?
I am hoping to discuss alternative meds on Monday but higher doses of beta blocker aren’t an option as I have a first degree heartblock. I have wondered about dronedarone so will ask him about this. Thank you. X
Just saw this I hope things are settling down for you. Always at the weekend or Bank Holiday!I'd think they'd offer you a CV if not. They will get that rate down somehow and take it from there.
You poor poor thing! My husband has had 4 ablations, the last of which has left him in permanent af...it's sad. He prefers to live with it at the moment rather than pace and ablate...they're controlling the rate with bisoprol but it's not ideal. I feel for you, he gets so down sometimes. His fear of pace and ablate is that it still won't get his heart in sinus rhythm so what's the point? Hope you get sorted...we go to ER with 140bpm...cardiovert!
Sorry to hear that. 140bpm is very fast. It happened to me recently. I was hospitalised and put on a beta blocker drip to bring my heart rate down. I am now taking 7.5mg of Bisoprolol, reduced from 10mg, with the addition of Digoxin. All good so far.
At the moment the 140bpm is not constant I seem to have about 5/5 hours at this rate then it goes back into slow AF with some periods of NSR. Because of this a cardiovert is probably not an option. I am now on 120 mg of sotalolx2 and at that dose it is both a beta blocker and anti arrhythmic. When in NSR my heart rate resting is 56.
They won’t give me even a moderately high dose of beta blocker because of heart block ( just first degree at present).
If I begin to feel really bad I will go to A and E but as I have access to my consultant through my arrhythmia nurse I feel that is the way forward for now. A and E here in Cardiff UK is to be avoided if at all possible right now. My last trip lasted 14 hours . I was sent by my GP but turned out to be nothing wrong with me 14 hours later!
Thanks for all your suggestions/ concerns and commiserations, I can’t tell you how much it helps to know you are all out there.
I had pm fitted last September and av node ablated in December. Had AF for 8years the last 2 in permanent AF and very symptomatic. I found it a big decision but it was definitely right for me . So much better without all the meds, just take apixaban now. Good luck
Oh goodness, this sounds awful. So sorry you’re going through this. Horrible when the tachycardia and afib last so long. Just exhausting. Hope your dr can come up with a solution to help settle things down. Dronedarone has worked well for me and I’ve managed to avoid amiodarone, so far. Best of luck on Monday
When my AF returned it felt like a big step backward but I did go in for a final ablation which has relieved things quite a lot although I'm still in AF. Two things I tried which helped while I was waiting for the ablation were crunching on ice cubes and repeating a mantra slowly ( not at the same time) which helped me to feel calmer.
I'm sorry to read that your AF is back but it is encouraging that you stayed in sinus for such a long time.
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Covid Jab - ending my previous comment on a posting a few weeks back, I promised I’d let the forum know how my jab went…….
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Three and a half years AF free....and then.....
