AF Association

Permanent AF

Hi just looking to chat to any one else who is in permanent AF.

I'm 45 and have had this since 2011. Currently take bisoprolol. Digoxin rami pril anti coagulate.

Had 4 x Cv can't get me back into NSR. Normal heart rate is over 100 bpm and heart damaged from failure back in 2011.

Would be good to talk to anyone else in similar situation.

Thanks

Sharon

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Beancounter is your man if you want to PM him.

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hi bob , is the cardiaversion a day in hospital or u need to stay more thx

if its working or not //////////thx

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Hi

I'm 44, have had Afib since 24 years old, had about 7 cardio versions, but 3 in one year and Dr said, he does not have much hope.

At first he did not want to send me for ablation (I had an open heart surgery at 5y so they were not sure ablation would work for me), but did eventually and I'm glad he did.

After Ablation in 2003, I only had 3 afib's, 2 that was set right with cardio version, and the other one with prayer and meds.

Read more about my story myafibheart.com

Janco Vorster.

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Hi Sharon, I'm 52, male and in permanent AF. My heart rate is now 'normal' - it used to be up in the 90s. I still do a fair amount of exercise. When I was diagnosed (about 5y ago) my doctor gave me Bisoprolol and aspirin. The Bisoprolol was to "cure" my AF. I now know that was bananas. After seeing an AF specialist at a stroke clinic I'm now on no meds. You seem to be on a lot of meds but I guess you must have a high Chads score because of your previous heart history. It took me a while to work out that my heart isn't going to wear out, and I realised early on that the Bisoprolol had the effect of making me tired . I've given up hope of going back into NSR. My heart quack has told me that a CV would be pointless. I've tried all the supplements that we talk about on here and no use ...

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Hi

I have just read your post so apologies for bothering you.

I have been in permanent AF since early August when I got stung by a bee and went to A & E. Have been on Bisoprolol and Rivaroxaban ever since. Cardiologist is guessing that I've had it for a couple of years. One cardioversion since August which put me back in NSR for 4 days only now in permanent AF again. I am very active with lots of cyclying and walking etc. Echocardiogram showed a dilated left ventricle which appeared to be functioning well and I'm going to have an MRI apparently to investigate further.

My question is, as you say you have permanent AF as well, how you took the decision to come off your meds and your rationale to managing any perceived risk of doing this. You seem to have come to terms with having permanent AF and not having any more treatment and no meds, so i was curious as I am new to all this. Also do you get any "episodes" and/or palpitations? Do you manage your AF through good diet, no alcohol and caffeine etc?

Thanks for reading.

Ian

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Hi Ian,

First, I think that people who have Permanent AF have it easier than those who have it intermittently. That is, apart from listening to my heart/taking a pulse/ having a scan, I cant tell that I have AF, which is why I have no clue when I started to get it apart from the fact that it didnt show up in a previous medical intervention, when - as I was put under a general - it should have been. I am not 'poorly'.

I'm not sure if you have it permanently and it was discovered when you had intervention due to your sting , or whether the sting brought it on (if it can?).

The NHS IMHO treats AF as primarily a stroke risk, rather than a heart condition, so if you're like me you start off being worried that your heart will conk out, and all your GP is concerned about is you not having a stroke.

There is also some opinion that AF does not increase your chances of a stroke.

I went along to a touring 'stroke clinic' and saw one of the AF specialists there and he advised me that there was no benefit in me staying on Beta blockers (phew) and that the risk of bleeding due to the blood thinners was more dangerous than what it could prevent. Its all a game of percentages now I'm afraid!

Because of the delay in diagnosis I have been advised that I am stuck with this, so my advise to you is hang on to that hospital intervention as long as you can, stay on that 'pathway' and make sure they do the best they can. Other advice is to make sure you see an EP not 'just ' a heart specialist. Also, from my experience, your GP may not be as clued up as you think s/he is

So in summary, as I have it permanently, I don't get episodes. I took the decision to come off the meds a) when someone who knew more about it than me advised I could (and this is by no means unique) and b) in the full expectation that probably when I'm 65 I will have to take something.

As to diet, well I eat healthily, not much booze, not much caffeine (largely a de-caff home), I have tried most of the internet AF cures and still have it :-)

So stick with the specialists, but learn as much as you can, so you can ask the right questions and be reassured.

Happy to say more if you need more help, but this forum is pretty good, there are a lot of people on the forum who can help and few tiem wasters.

All the very best of luck,

Gary.

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Thanks for that Gary.

I intend to ask to see an EP after my MRI (whenever that is). My GP says my CHAD score is zero so I don't know how long I'll be on Bisoprolol and blood thinners for. I'll certainly ask but they did say they would review the medication 6 weeks after the CV. I too worry about taking these meds long term so, like you, I may come off them and go back on them when I'm older. I managed without the meds before I was diagnosed with AF and I felt fine! (Unless of course the bee sting brought it on , but we'll never know I guess!)

Thanks again

Ian

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Hi

I started with Bisoprolol at diagnosis with the dose going up, and then it came down over some months. The only outcome was me feeling tired. I was also started on aspirin and then ended up on clopidogrel when aspirin went through one of its unfashionable phases. Then the advice was that for me it was of marginal benefit if at all. So with GPs complete agreement, I stopped.

Cheers

Gary

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hi iam in 24/7 AF / JUST SEEN THE CARDIA TODAY HE SAID HE WILL do cardiavervion on 4 weekes time , to see if tha will bring back to snr/ as i done it 7 years ago and was ok till 3 month ago start again , you are not alone / just try to do your best dont let it put u down

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ha ha thanks for the reply. Ive been in 24/7 AF for 4 years so it wont get me down. Just good to talk to other people who are in the same situation.

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Hi Sharon,

I'm in permanent AF - diagnosed over 3 years ago - but suspect I had it many years before.

I used to take bisoprolol but this was changed to diltiazem and then digoxin was added 2 years ago. I also take warfarin. My diltiazem dose was doubled last summer and it took a few months to get used to the higher dose.

I mainly have no symptoms but get out of breath on inclines. Cardio said no symptoms so no procedures.

A 24 hour monitor 6 months ago showed my heart was pausing and I am still waiting for the results of another 7 day monitor. I walk about 3 miles 4/5 times a week with no problems but I was able to do more before the diltiazem was doubled.

Keep in touch.

Marion

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The only real long term approach to Afib is ablation and then minimal use of medications except for an anticoagulant to minimize the possibility of ischemic stroke. For most people cardioversions - if they work at all - do not seem to help you hold on to normal sinus rhythm for very long. Unmitigated Afib only gets worse with time.

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Hi. I've got permanent/persistent AF and have had this since 2002. Originally Harefield tried a conventional (paddle) cardioversion & this failed. However they tried again using an internal catheter based cv and this got me back into NSR for a few months before I lapsed back. They then put me on Amiodarone and tried again and I had 8 years of NSR with a couple of blips when I overdid things and had to be re-cardioverted (both times internally). But eventually I had to come off Amiodarone due to eye complications and was put on Dronedarone instead, and ended back in AF again. I was originally advised against having an ablation, though possibly the advice might be different now. So I've opted to stay in Permanent AF as it doesn't cause me too many problems - I can still play golf 3 times a week, sail and do what I want.

Discuss having an internal cardioversion with your EP if you haven't already had one. There seems to be quite a lot of confusion on whether persistent AF can be considered permanent as I think the initial success rate for internal cardioversions is very high (over 90%) the issue is then how long you stay in NSR and whether you need drugs like Amiodarone to keep you there

Hope this helps

Lance

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Hi thanks for your reply. I've already had amiodorone and 4 cardioveraions so not alot of hope I don't think. Like you it doesn't stop me from doing anything. I'm not great at walking up hills but I can live with that.

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Were any of the cardioversions done internally via a catheter - that was what made a difference in my case - doing it internally is much more effective

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No I've never been offered that

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I think it's worth asking about it. It's not a permanent solution but might get you back into NSR. I think you'll find details of it on the AFA website

Lance

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Hi, can you please mention what is your heart rate when you're in afib, are you in rvr or slow afib?

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I'm in permanent AF which means that my heart beat is all over the place. When I was originally diagnosed I also had dilated cardiomyopathy and was in fast AF. Drugs and exercise have more or less eliminated the cardiomyopathy and generally I have a resting heart rate of around 80 bpm.

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An antibiotic called Cefdinir interacted with my Warfarin, caused a GI bleed, put me in the hospital for 7 days) and put me in chronic A-Fib in Jan., 2013. I felt like my heart was jumping up and down all the time & made me very nervous. In Mar., 2013, I found a cardio-physicist who put me on Tikosyn, 500 mcg., 2X/day (during a 4-day hospital stay - have to be monitored for this med) and since then I have been in Sinus mode with only a few blips every now and then. Tikosyn is expensive, but worth it. Doctors have to be trained to administer this med. Good luck!........................T

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Hi Sharon I'm like you it's seems worse at night i panic and can't sleep and it feels like I'm going to stop breathing when I try to go off I dread night times I think of everything and I get myself into a right state I sat up in bed all last night as if I lie down it gets worse

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