Disappointed me😭: Hi all I finally saw... - Atrial Fibrillati...

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Disappointed me😭

7164 profile image
7164
•24 Replies

Hi all

I finally saw the EP last Friday and told him that I had been AF free for 14 weeks just on 2.5 Bidoprol . We spoke about an ablation or Dronedarone if the beast comes back. Decided to stay as we are for now. Then Xmas eve morning bang Af ( 4 hrs). Few ectopic since then.

So very disappointed when I thought I was winning.

Any advice? Ablation or dronedarone or do nothing. Had this for about 18 months and about 4 real bouts.

I have done all of the lifestyle changes.

Thanks

Rod

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JaneFinn profile image
JaneFinn

I’m so sorry to hear this :(

I think we all on here know that hideous disappointment when AF kicks back in. Gutting.

I’m afraid that as I haven’t tried dronedarone and only just heading nervously towards my first ablation, I don’t have any helpful advice. Other than the usual things you will have read about it being only worth having an ablation if your quality of life is suffering through the AF.

I think there are also circumstances where if you don’t convert back into NSR without a cardioversion, then they’d rather do an ablation sooner than later. (That’s the situation I’m in atm.) That doesn’t sound like your situation. Personally I’d ‘leave it and see’ at this stage as it sounds like things were on a better trend -but then I’m a coward!! And others would probably say it’s not wise just to leave it :)

It’s worth a proper chat with your EP - hopefully he will have advice specific to your situation. But also it will be interesting to hear other people’s perspectives on here :) Xx

jeanjeannie50 profile image
jeanjeannie50

If you've only had 4 bouts of AF in the last 18 months and their duration is just a few hours, then I would say stay as you are for now. However, it depends on whether those AF attacks make you feel really ill and how long it takes you to pick up afterwards.

Some people believe that the sooner you have an ablation the more likely you will feel better. I don't know if that is true.

I think ablations damage the heart and was once told they can make it a bit stiff in its function. I feel that once you've had one there's no chance of ever having a normal heart again.

I've had 3 ablations and still have AF.

Have you really stuck to all the lifestyle changes? Including cutting out all artificial additives and sugar? How I wish I'd known how much that can help, before I had my first ablation.

Have you tried taking magnesium tablets, or putting the salts in your bath or rubbing on the oil spray, that has wonderful results in decreasing AF for some people.

Jean

7164 profile image
7164• in reply tojeanjeannie50

Jean

Thank you

I have not cut out all sugar. When I get it the worst part is the fish jumping in my chest and the speed 140 plus.

Interesting that you have had three and still have the AF. I am taking magnesium but not the salt bath

Rod

jeanjeannie50 profile image
jeanjeannie50• in reply to7164

Oooh Rod I remember that feeling of the floppy fish, not had it for ages but when I did I was convinced I would surely die. It all seems too much for the heart to cope with doesn't it! Having an attack like that is pure mental torture.

I have at times, when believing that my tablets were making things worse, stopped taking them and immediately felt better. Would never recommend anyone else doing that though because their heart condition may be different to mine.

I've had AF for almost 15 years.

Jean

7164 profile image
7164• in reply tojeanjeannie50

Jean

Thank you for your advice.

I don’t get many attacks but they are horrible. I am finding that my anxiety waiting for the next one is really the hard part. I am limiting everything I do and feel that life is now so different

Three ablations that didn’t work?

Rod

jeanjeannie50 profile image
jeanjeannie50• in reply to7164

Yep the 3 ablations didn't cure my AF in fact the first two made it worse. Third did help a bit. I have some positive, but mostly negative things to say about them.

wilsond profile image
wilsond• in reply tojeanjeannie50

thats my take too Jean.xxx

wilsond profile image
wilsond• in reply towilsond

meaning on the effect of ablation on the heart...cant get the hang of these threads!

Buffafly profile image
Buffafly

Not sure how long your episodes usually last, but if we're talking about 4 hours plus recovery time four times in 18 months I would carry on as you are. Only you can know how much the thought of another episode distresses you. An early ablation may 'cure' you temporarily but then will you be constantly worrying that 'the beast' may come back? I had an ablation which failed after about two years and in a funny way I was relieved because then I didn't need to worry about something that might happen! Weird I know......

7164 profile image
7164• in reply toBuffafly

Buffafly

Thank you.

Good to talk

rod

Obviously we can understand your disappointment but what you are experiencing is not unusual because unfortunately, AF is generally a progressive condition. My view is different to the others who have responded, but there are no right or wrong ways to proceed, all you can do is weigh up the pros and cons, make a decision then pray its the right one.

Firstly, it’s good that you have made some positive lifestyle changes and it is crucial that you maintain that discipline regardless of what you decide to do. You are relatively young and perhaps concerned about taking quite potent medication for the rest of your life. If your heart is in physically good shape, personally I would (and did) pursue the ablation route. Even though it’s likely that you will need more than one, the chances are that any AF you experience will be less severe and whilst there are no guarantees, it could stop AF for several years and even longer. Generally, most EP’s say the sooner the better whereas others prefer the wait ‘n see approach as has been suggested so far. Absolutely nothing wrong with that at all, but nearly all the evidence suggests that it will only get worse. I have no personal experience of drondarone but I understand it is one of the more potent AF medications.....good luck with your deliberations

7164 profile image
7164• in reply to

Flapjack

Thank you

My heart is otherwise healthy. I just dont know if the Bisop is making me worse? Certainly tight chested every time after about 2 hours. I was never breathless before but now I do get breathless. I am physically pretty fit so ??

Rod

Buffafly profile image
Buffafly• in reply to7164

Bisoprolol is not the only thing you can take, I take Diltiazem instead because I have asthma. Also there are other beta blockers and antiarrhythmics if you don't want to go straight to ablation.

• in reply to7164

Breathlessness is one of Bisoprolol’s best known side effects.

7164 profile image
7164• in reply to

Thanks Flapjack

Anything else about bisop that you could share with me?

Long term?

I only have a fast ticker when I get AF . I used to have perfect BP as well?

• in reply to7164

Not really, for me I found it difficult to tolerate but it was difficult to know whether it was the AF or the medication that was causing me to be breathless and lethargic. I changed to Diltiazem about 4 years ago and found that much better for me but I have also had 2 ablations with maybe a third on the horizon......

7164 profile image
7164• in reply to

Thank you

wilsond profile image
wilsond

It can be annoying to think we have cracked it! BUT I ,in agreement with Proff Osman, have decided that even so I would not feel the benefit of having an ablation as it is only for quality of life,if you feel that, even with your infrequent bouts ( dont mean to sound patronising but many have lots more than you report ,myself included) that you dont want to control with drugs first, then ablation is probably for you.

7164 profile image
7164• in reply towilsond

Strong very limiting drugs for life😢

If I have to and no other possibility!

wilsond profile image
wilsond• in reply to7164

In my case the drugs ( flecanide and bisoprolol ) are only taken on the onset of an AFib or flutter episode which stops it fairly quickly. They give me no side effects and as mentioned ,the ablation option will give no added benefit to my quality of life . Ablation does not always work for everyone. It's a quandry!

7164 profile image
7164• in reply towilsond

Only at the onset of an attack?

Can we do that? Flec has never been mentioned and I am sure that the bisop is giving me flutters at any form of exertion or excitement

RoyM profile image
RoyM

Personally for me my QOL improved significantly when a went from PAF to permenant AF about three years ago. I am anticoagulants and 1.25 Bisoporol daily. My resting HR varies from low 60's to 75. I have lost about 10% at the top of my exercise ability but generally I now give the AF very little thought. I refused an Ablation and up to now Don't regret my decision. I have stopped chasing the Holy Grail of NSR. I am a 72 year old male. We are all so different. Happy New Year to everyone. Cheers Roy

7164 profile image
7164• in reply toRoyM

Roy

How did you deal with paf and exercise

I can’t even finish a game if golf without getting paf ot tachycardia

RoyM profile image
RoyM

When suffered with PAF prior to being in Permanent AF it was difficult and my heart rate was anything from 150 to 180 and it wiped me out..since going into permanent AF life as been so much better. I swim, cycle, walk 5 miles a day and enjoy chasing around after my granddaughter. I wouldn't undergo an Ablation at this moment in time. If things change then obviously I will re-consider. I have no reason to think my present position will change I have been in Permanent AF for 4 years this May coming. Cheers Roy

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