Well I have now had to accept that we have exhausted all treatment and I am now in permanent AF. My rate is still high, 100 at rest and 130 on movement for 7 weeks now. I started Digoxin and stopped Flec last Friday and seems to be working slowly, aiming to 70/80 bpm at rest.
If this doesn't work I guess it will be having the Pace & Ablate.
One positive is I dont have to be in fear of an AF attack and I'm functioning well even at this high rate and not feeling it at all... just shattered.
So just couple of questions pls...
If AF is rate controlled are you still at more risk of developing Heart failure?
Last week,just for one night I had a swollen ankle which was extremely pitted and has worried me re.Heart failure. I had been on my feet all day on a boat in the middle of the Norfolk Broads so I can understand swollen but concerned about the pitting! Does this mean heart failure?
Thanks all xx
Oh I am still been referred for a chat re. the mini maze but highly unlikely it will work.
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If AF is rate controlled are you still at more risk of developing Heart failure?
Less of a chance, but always a chance. Not heart failure, but enlargement and wear which can lead to.
swollen ankle which was extremely pitted
Not a doctor, but may be side effect of medication or water retention.
Need to contact your doctor soonest. Need heart rate under 100 though you may be feeling ok.
At age 49, and assuming no other conditions, you sound like the ideal candidate for the mini maze. Hopefully, MummyLuv will see this post and relate her successful experience.
I've been referred to Sheffield to have a chat regarding the mini maze but my EP thinks highly unlikely for success but I'm going anyway!
My EP is great and after trying all meds, 3 ablations and apx 17 cardioversions we have to accept it's not going to go.
I never thought this would be my outcome so know nothing about PermanentAF but got to say it will be a relief not to be worried of AF episodes and failed treatments.
I have Permanent AF and well, lets say I don't know anything about it. No symptoms. Not sure about the heart failure, Id need to look at the stats, but I see it as the ongoing stroke risk. Good luck getting further treatment, at some point (maybe your EP is already there) theyll say enough is enough (probably).
Thanks for flagging Mav7, this lovely lady and I have chatted before and she has been referred for consultation with Mr Hunter. I do hope she is a candidate. Wishing you all the best booboo73 . My experience of long term persistent was that I could still have ‘attacks’ where my heart rate would go really high and I had to rest up to bring it down so avoid A&E, I did still find myself exhausted and out of breath when trying to climb stairs or a hill.
High heart rate in AF can cause the heart to work harder, enlarging the atrium and there is still a small chance in time it can cause heart failure but less likely if your rate is under control. The thing with digoxin is it is very good at controlling your heart rate when resting however in some people it does not control the rate when active/exercising. It worked for me as whilst I run around a lot after 2 kids I am not a sportswomen.
seeing you here I just wanted to catch you for a second and let you know I had a cardioversion last Friday. 158 heart rate at the hospital 82 when I woke up. Not good still doing well I do a follow up on the 31st with my new doctor. I have been blessed with a great doctor close to home and a wonderful hospital close to home. Fingers crossed this will hold for a while. I hope you are doing great you were my first contact here and you’re the one that gives us hope
I had a doctor friend of mine tell me that some of the best get too big for them selves and surround themselves using this stuff is guards to keep people away. If you know anything about my previous doctor he is a big research person perhaps he should’ve stayed there. He is still looking for new patients maybe we should call them guinea pigs. I am very angry it has been hell since the end of April to be honest with you and the only relief I had was since last Monday meeting my new Doctor Who is local up the street from me practically. By Friday I had an echo cardiogram and he decided to push forward and do the cardioversion also am by Friday afternoon I went from 158 or so to 80 or was an 82 lol good drugs. Still 80 today I wish you could see the smile on my face. Thank you for being our cheerleader out here you definitely gave me lots of support and encouragement and I’m not done yet I know. Hoping this holds so I can get my back surgery soon but I’m pretty sure another ablatement will be in the future unfortunately. Monday I made the Pulmonary guy about sleep apnea. From what I understand getting that in check as fast as possible will play a big role in everything. One step at a time but at least I can take them now and if I get that back surgery I’ll finally be ready for the marathon lol
I went into persistent AF in July this year and like you I was taken off flecainide and put on digoxin. I agree it is more comfortable than the paroxysmal AF but like you I feel shattered all the time. I have asked for a cardioversion which I have not had before which they have agreed to in Sheffield and they will switch me onto dronederone. They have said they will only try this once. I was due to have a pace and ablate but my pacemaker got infected and had to be removed. It is hard to come to terms with being in persistent AF. Hope the mini maze is suitable for you.
I take 125 a day and 3.75 mg bisoprolol a day. Thats why I am going to give the cardioversion a go but dont fancy the dronedarone they are going to put me on instead of the digoxin.
BobD always says that permanent AF is just when you and your EP agree that there's no point in further interventions. It's no different I guess otherwise than persistent AF. I know several people with persistent AF who are living happy lives on Bisoprolol mostly. Digoxin will be doing the same job. You do seem young though for giving up at this point. Definitely check out the mini maze. And new treatments ARE being devised - not new drugs apparently- but procedures are getting better. Fingers 🤞 for you.
Thank you. I have tried every possible tablet and procedure now. I have emailed to remind them of my mini maze appointment so fingers crossed it will be soon
hi boo-boo, I’m waiting for a date at Sheffield for a convergent mini maze, my original EP wasn’t keen and could only offer another ablation or pace and ablate. Sheffield has filled me with hope that something else can be done,I’ve been in flutter at over 100 bpm since May and very symptomatic. Sorry can’t be any help with swollen and pitted ankles, mine do swell occasionally but only if it’s hot or when I used to be on my feet all day, then again I’m overweight.
Since May... you must be shattered. I'm bad enough after 7 weeks. I'm already bored of watching telly and sat on my bum.... never thought I would say that!!
Last time I rang I was 5th, the 4 people in front where all October, but dr sahu (can’t find much info on him but having to just trust if he’s mr hunters preferred Option for EP it will be ok) isn’t listing any for November and he’s the hold up not mr Hunter. The admissions said hopefully 1, 8 or 15 th Dec. So hoping I hear about a pre op soon, as feel a bit in limbo. Covid guidelines say unless an emergency surgery should wait 7 weeks which actually would be 1/12. So fingers crossed. It’s taking a while to shake covid off still feel like I’ve got a heavy cold and coughing up gunk, I had to take an extra 1.25 mg of bisoprolol for a few days. Guess it’s only 10 days and we’re both negative now. Sorry to hear that you’ve caught it too and had such a challenging end to your holiday.
I've been in permanent AF for just over 2½ yrs. I've tried all the medications and having previously been on the dreaded amioderone for 6yrs ( which kept the AF at bay until it didnt 🤪), I'm finally at the pace and ablate stage.
I had the pacemaker fitted 4weeks ago and am due for the AV node ablation in a couple of weeks time.
Not thrilled with this but the effect of never knowing when I'm going to have an off day,is impacting on my life.
Generally my heart rate is bouncing around 80-90 bpm average but sometimes it's up in the 120-130 which is just too tiring.
Diltiazem is helping and when it gets too bad, a very small dose of digoxin, as I found digoxin didnt suit me, so just use the low dose as a pip.
I agree that the effect of going into an AF attack is far worse than being in it permanently but its exhausting.
Good Luck with the av node ablation. I will look out for your posts with interest as I think that will be my next move. I think I would say do it if they offered me it right now....
I have been in permanent AF now for just over a week! I am on Flecainide & bisoprolol, I am on the waiting list for an ablation, however, my HR is exactly the same as yours, 95-100 at rest & 110 plus when moving around , I feel sweaty at times and also a little dizzy, it’s crap! I’m only 53! X
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