Hi All ,
Can anyone tell me how frequent their episodes of PAF were before they entered a permanent state ?
Also , how did you get out of the PAF episodes ( self cardioversion / wait it out / hospital cardio version ).
Previously before starting on flecanide 3+ weeks ago I was having episodes every 3-4-5-7 days I felt I was closing in on a permanent state.
Did anyone here get to episodes as little as every 2 -3 days or even every day ?
I think you will find it will be very individual. My husband had occasional AF episodes - less than 4% over a year, then suddenly went into persistent AF after about 7 years of very infrequent episodes. I had increasingly frequent episodes - every other day or so - and have never gone into persistent AF. I now have almost no AF after treatments, neither does my husband. Nothing is inevitable.
Judging on the few replies so far it certainly seems that way.
What a silly condition this is ,another one of life’s tests / mystery’s ...
Lol I agree silly indeed. 😩
For myself I had episodes every 3 or 4 months apart for about 3 years, just waited them out, each lasted a few hours or so.
Suddenly a year ago, my AF became persistent probably triggered by heat exhaustion when on holiday in Sri Lanka.
All the best
Colin
Thanks Colin ,
I had episodes lasting 2 days on then 1 day off. Was told would soon become permanent but never did. My HR was never high. Could be in AF at 75. Eventually gave Flecainide another go and now AF free for 6 months.
Thanks Hylda,
Did you just ride it out until it cleared itself ?
What dose did you start on / successful on ?
I only ever had to go to resus once and that was after I caught a virus from my great-grandson, the rest of the time I sat it out. I had had Flecainide before and then it just made it worse, felt like Concorde’s sonic booms going off in my chest. Eventually got fed up waiting for permanent to arrive. EP said four months but 8 months later still 2 on 1 off, so took 100 x2 and bingo. Did offer to go back to 50 but EP said if it works go with it xx
I think that’s what I need.
50/100 or 100/100.
50x2 is having an effect but still getting regular breakthroughs ( all be it easier to clear / starting much later in the night ).
Do you have an arrhythmia nurse you can ring to sanction it. Don’t think Dr can. I tend to tell mine after the event but luckily she agrees with me. D
My only contact so far was with a cardiologist I booked privately a month ago .
I was referred to a cardio in September last year - then I missed the appointment letter that was sent out in January ( wrong address ! so I went to the back of the queue again and had to be re referred ).
Rather than waiting ( which in the current crisis I thought could have been 6-9 months or even more ) I booked privately at the spire in Cardiff and seen Navroz Masani ( very professional ).
He confirmed PAF which was what I knew for some time.
I also had a full heart scan which fortunately was all ok .
So at the moment I have recently emailed them ( spire / Masani ) for advice.
.... not sure how the procedure works - just finding it all out - I’m just an amateur AFibber at the moment 
From what I read on here and my own thoughts , are that the GP isn’t really in a position to advise on the finer details of drug doses / times etc ..
And that I would probably be given the “broad brush “recommendation that might not suit me best ...
My GP didn’t even refer me after a trip to resus. It was only because I mentioned shortness of breath to a locum that she referred me.
I had infrequent episodes for about 8 years. Maybe 4 a year, sometimes, only one a year. The frequency jumped up at the end of last year, to 1 a fortnight, although I think the shortest interval was 7 days. Funnily enough, they have become much milder and more tolerable though and don't last as long either. They hardly bother me in fact. It may be coincidental, but the frequency went up round about the time I started taking Tamoxifen and had radiotherapy on my chest wall being one of the extremely small percentage of males to get breast cancer. I went to my GP and he said providing it wasn't adversely affecting my lifestyle, to see how it goes as I had options, such as Flecainide. The latest interval between episodes was a month and so it will be interesting to see if that trend continues.
I had one episode that was so quick it was never picked up (passed out playing football). Nothing for 2 years then straight into permanent which required cardioversion. Controlled by flecanide for a few years after but was having to increase dosage due to frequency of it coming back. Had ablation last September and for the time being off all medicine although I have the odd missed beat. AF is such an odd and frustrating condition.
Ross , as your a hard as nails east ender I’m surprised you got this silly condition
So whilst on flecainide , did you carry on with the football or did you de train after the passing out incident ?
Ive given up all fast running ,and now I am hoping I can still do quite a bit of running ( all be it -all of it at 130 bpm max ), but I’m thinking that the flecainide is just masking the issue and that perhaps like you - the dose will need increasing until ablation is the only way out ....
Ha ha the condition doesn’t discriminate. Nope still play football. Interestingly I never had any issues with exercise post that first time. The rest of my AF episodes were when I woke up. The flecanide and bisoprolol did slow me down a little. Ultimately it was progressive for me and at 35 ablation seemed the best option.
As some say , it really is a mongrel condition - so many variations ..
The fact yours are when you wake up are the opposite of mine ..
So you progressed from 100mg to 300mg flec a day with it still coming back - hence no way out but ablation ?
Yep pretty much.
Brief history of my AF.
1997 -first sign of palpitations
2000-every 6 weeks for about 2 hrs
2010-every 2 weeks for maybe 12 hours
2017-twice a week for 24 hrs of even more.
2018-cryo ablation BHI
Flecainide didn't work as PIP and took it for 3 years 100 *2
Bisopropol - I want to forget this one
And I had to assist my Cardiologist by using Kardia.
Now AF free for 18 months (for the moment). But happy days.
Still did lots of things with AF -e.g. Gym,hiking etc but AF is a kind of dread hanging over you. It's almost as if you are waiting for the next episode.
If your EP recommends ablation -seriously think about it. Everybody is different but I have no regrets whatsoever.
Go well.
Thanks Magson.
I have a feeling that in my circumstance all roads are heading towards an ablation much sooner than I had initially envisaged .
Please someone correct me if I am wrong - but at my age - mid40s , no other issues , very fit , apparently I am a good candidate for an ablation ( higher chance of success ).
Ah the sense of dread ...
Afib - It’s like a sick game , I am the yo-yo that mr Afib plays with , he spins me around, lifts me up and throws me back down , I’m completely dis orientated , then every now and then he grabs me and zaps me before the game begins again , all the drugs do is stop him grabbing me ... I just need to cut the string and stick two fingers up at him
I had occasional runs and blips for years, then suddenly got one that lasted 45 minutes (jumpy, uneven heartbeat in my case). The ER (emergency room) doc got it settled with fleccanide, but the next time, a day or two later, it went longer, then for hours, then full time, all within a week or two. I went like that for nearly a year, fleccanide doing nothing, until a neighbor (not my cardiologist!) told me about a rhythm specialist she was going to, and it turns out there was a whole hospital wing dedicated to it! Cardioversion did nothing, so I opted immediately for ablation. Ahh, what a relief! It lasted about 18 months, and required a second ablation (very common), which has held, without medication except anticoagulant, for about four years now. I started getting worrisome extra beats and thumps about a year and a half ago, but found liquid Coq10 to keep it at bay. Now pretty much back to my pre-persistent annoying thumps and trills once or twice a day (more in my sleep), but holding steady. Ablation was definitely the answer for me. Good luck in your quest. There are as many stories as there are people, it would seem. BTW, I am 73, and my first ablation was about 6-8 years ago. The doctor makes a big difference.
My AF journey started in 2009 by 2015 I was in permanent AF and what a relief it was much easier to live with. I was offered an Ablation I didn't think that for me and so it proved (for me) I have now been in Permanent AF for 5 years In terms of medication I take 1.25g Bisoporol and an anticoagulant. My resting HR is high sixties to low seventies, when I exercise it shoots up to anything from 90 to 135 BMP but luckily comes down just as quickly. I have now been discharged from the LHCH after 4 years of monitoring with CT etc and any reduction in my heart performance was insignificant. I am 73 year old male and I can comfortably cycle, swim, walk around 5 miles a day and most importantly I can chase my granddaughter around without difficulty of shortness of breath. Cheers Roy
Permanent AF
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