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

16 Replies

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  • Beancounter is your man if you want to PM him.

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

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

  • 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.

  • 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 ...

  • 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

  • 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.

  • 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

  • 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.

  • 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

  • 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.

  • 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

  • No I've never been offered that

  • 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

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

  • 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.

  • 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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