As some already know I’ve had a hard recovery since ablation on 23/11/22. HR was on the rise again slowly from then and the severe respiratory episode went on & on. Just coming to the end of what I think is maybe the 5th antibiotic course!
I’ve now been on digoxin 125mcg since 28/2/22 and following all the other dramas of the last 12 months it’s seems to slowly be reducing my HR and breathlessness!
As this seemed to be one of a last few options left to me does anyone else know - if this continues to work, is it a better option than another ablation or pace & ablate?
Some may recall my EP isn’t keen to P&A as I’m classed a young (58 - love him for that 😊 to be dependent on PM but I usually get loads of complications post op.)
Can I strengthen the heart by being able to exercise better & reduce possible heart failure by using Digoxin?
Neither P&A or Digoxin get rid of AF - I’d never been offered Digoxin ever but but beginning to feel normal after 10 days! Has anyone been on it long term and still feel wonderful (also on Bisoprolol, Flecainide, Losartan & Apixaban) xx
TIA everyone, been a bit slow to respond lately due to issues but will asap xx
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Afibflipper
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You have been through the mill Afib, but I’m so pleased to hear that you seem to be seeing the light at the end of the tunnel. I don’t know much about digoxin, but my friend’s mum had AF (this was years ago) and was on it for years, and was always very fit and active, and lived into her nineties. No doubt someone on here will be able to give you some info on it, but very best of luck with your health.
Oh and by the way, when you get to my age, 58 IS young. xx
A retired nurse told me that Digoxin used to be the only treatment for AF and they were taught that the effect was supposed to be ‘Slow, Strong and Steady’! There was a poster on here some while back who found digoxin very effective but all I can remember is that they were Australian unfortunately.
I’ll have a look through, strange as today was a little breathless again but going to chat to Gp a had fluid on left leg again (some days both and some days none) I’m not on diuretics so may be linked but thanks for your input x
I now have Stage 3 kidney failure (happened after 1st ablation), but it is well managed with blood pressure meds and a diet low in protein, high in vegetables. I mention this because while I don't get swollen legs, I do tend to retain a lot of water. There are a number of veggies that have diuretic properties that have helped me immensely - cabbage, asparagus, beets, celery, cucumber, etc... While your GP will determine if you need meds, you can also google a full list and also include them in your diet as diuretic meds can have other side-effects.
I had a pacemaker implanted after my 1st ablation found I also had sick sinus syndrome. And while I just had a 2nd three weeks ago, they did not do a full-on pace and ablate. I will say that my pacemaker has definitely saved my life but I'd definitely hesitate to need to completely rely upon it... if meds can help you prevent that, I'd definitely try that 1st! On the other hand, newer tech in PM's is pretty great and getting better year by year.
Thank you that’s all very helpful - I too am at stage 3 kidney so I’ll look into the vegetable side too.
It has only recently occurred to me as to why the AV node is completely killed off when others have PM and keep AV node functioning although incorrectly! I think the more I understand about individual bits I’m getting myself bogged down and anxious at other stuff.
I had also noticed memory loss following the previous cardioversions but I recently think it’s it’s happened after the ablation! Many said the same happened to them but seemed to improve as did mine. My husband is now pointing out things that I’ll have asked or mentioned say 30-60 mins ago then I’ll ask the same again and I really have no recollection of it 🤷♀️
I really hope you continue to make a good recovery and nice to know I’m not hesitating alone xx
I was able to pull my eGFR up to around 40ish with diet and a low dose blood pressure med (it helps the kidneys function better). Plus the diuretic veggies really help!
As to memory loss, I definitely had that after my 1st ablation but it could be meds? And I definitely have it now almost a month after my 2nd ablation.
As to my pacemaker, it was due to bradycardia - it just makes sure my HR doesn't go too low. But they knew I still had Afib after my 1st ablation - thus the need for the 2nd.
Perhaps you could get a second opinion? Maybe consider the mini-maze procedure? Or try the digoxin for a while and see if you tolerate it? Maybe talk to a cardiac device person about their thinking for pace and ablate and also, which PM's they like, don't like and why?
I know it is far too easy to be pulled down a rabbit hole when reading about Afib, Aflutter, and AV node dysfunction but this is what I know, your case is unique to you and you alone. Only you, after consulting with your doctor, can make the right decision for you. Me, I try to approach this with a "research" mind-set and then make a T-test of all the pros and cons for each item I am considering. It seems to help calm me down and really helps me make a firm decision!
Great advice there thank you, I had a while ago thought that yes I’d everything in hand but, never thought of contacting actual device companies at all. I felt that “just going with the flow” do this do that it’ll be fine then a big whoosh of tidal wave panic and that started that feeling of being sucked into the whirling plug hole of water dragging me to the chasm of “I’m doomed!” Think it’s been the rough ride of ill health events that hit me after the Nov ablation - I think maybe it only just hit how ill I’d been for months after & as I began to feel I was coming out the other side then it hit - could get any worse. I need a shove off the woe is me seat! Thank you again for the virtual shake 🤗 I do appreciate it in a good way - hope you enjoy what’s left of the weekend x
As to cardiac devices, there is usually someone that runs that department but not always. At first I'd see a person from Abbott who'd download my data and make suggestions on rejiggering the settings. Recently though, my local hospital has a person (not an EP) who runs the device clinic - he sees all kinds of pacemakers and definitely has some firm opinions. So if there is such a person, perhaps your EP can set up a meeting to 1) give you real world info about various products and 2) give you input on their experience regarding pace & ablate.
However, if it were me, I'd focus on getting over that nasty bronchitis first... it sounds like the digoxin is working to help your heart while you do that. Maybe put all of your heart worries away for a bit until you're strong enough to bring them off the shelf again?
I have a friend who has heart failure who takes beta blockers, anti-coagulants and digoxin. She is pleased with the way her afib is being managed and leads a normal life. I think she is in her late seventies. I know very little about digoxin other than I was given it when taken into hospital with a high heart rate and all the normal treatment (beta blockers and fleccanide) failed to bring it down. I hope you continue to make a good recovery, not easy for you when it takes such a long time.
I know Digoxin comes from Foxglove plants and can be very toxic - I read that the toxic level is very close the the treatment levels - a just hope it works and I guess it was a success for many years ago if they’re still bringing it out these days 🤞
Hope you are feeling the benefits now of your op from when we were discussing morphine 😂
hi flipper so sorry to read your post taking so long to control your symptoms the medication your taking is certainly for AF but what suits one does not suit another.1 would ask what other treatment your GP can advise other than continually taking antibiotics. Otherwise you are going to have more invasive treatment. At 58 your a youngster. Can only hope you improve take card x
Thank you Ludham, if it wasn’t oral antibiotic it was IV, I have a day and a half left of the 10 day course and so far seems very good and right now nothing seems to point to chest infection 🤞I’m taking daily vitamins & squeezing lemons limes and orange for the Vit C - I’m feeling very determined & was just having a wobbly about the pace and ablate issue which is one of the last options
I think you are probably right about it being very strong. It brought my heart rate down when many other medications failed. Hope your's remains stable.
Re my op, the arthroscopy was a complete failure - left me in a worse state than I was before. My walking is much worse and I now have a lot of pain after 3 to 4 hours in bed. Trying not to take painkillers because I will need them for when I have a replacement knee op. I don't want to get used to them! Have a nice weekend.
I’ve not taken Digoxin myself, although, now I’m in persistent AF I am wondering if it would be helpful, so it’s on my list of questions to ask the cardiologist about when I see her next week. ( I’m the same age as you btw) However, my Mum has been on it for around 11 years now, along with Bisoprolol, diuretics and Wafarin and, despite her diagnosis of heart failure and AF, has been very active for the majority of that time. She’s slowed down a bit now but then she is 88😀
I do hope things improve for you after all you’ve been through.
hi, I’m on Digoxin and have been for some years. I also have Bisoprolol And a pacemaker. My AFib is persistent for life now but I don’t want any ablations as I don’t want any heart damage. Pace and ablate was offered to me but I refused. The pacemaker is keeping me in beat whereas I did have episodes of being lightheaded without it when my beats hesitated, the Digoxin gives my heart muscle strength, the Bisoprolol stops my heart racing and I have for frusemide to stop fluid retention.
All this plus Apixaban keeps me Ablation free at 76 and hopefully long term.
Both my parents were on Digoxin and my mum lasted until she was 98.
Take your time considering surgery, every operation carries risk.
Hi there.After being controlled very well with amioderone for 6yrs ( yes I know it's an awful drug but with close monitoring, it worked for me), it stopped being efficient and I ended up in permanent AF.
I tried Digoxin but couldnt get on with it at all but then Bisoprolol made me feel terrible as well.
In the end, after trying Diltiazem for a while, I decided to take the pace and ablate route and so far so good. I feel like I have my life back again.
It was an extremely difficult choice to make but one I'm glad that I took. I now only take apixaban , which is another plus, to not be on so much medication.
Difference for me is that I'm 68yrs and not 58yrs!. Its a really tough choice for you to make but all I can say is that for me and after being in permanent AF for 2yrs, it's a game changer.
Thankyou Nannysue1, it’s very reassuring even though scary. When people say they get their life back, does that mean running up & down stairs, to get the bus or out of the rain. Walking miles including inclines which I can’t do!
Yes and yes. Well at 10yrs older, maybe I dont run up the stairs but I can certainly go up them relatively fast without any problem and also inclines. A couple of weeks ago we flew over to ireland on an Ancestry tracking mission. The days were spent up and breakfasted, off tramping round churches and graveyards, stomping around sightseeing and records hunting and still had plenty in the tank for the evenings! Before the pacemaker I couldnt have done much of that. Not only the breathlessness of climbing inclines and stairs but just not having any energy to do half of it.
My cardiologist told me last week that apart from avoiding contact sports like rugby 🤣 to avoid a straight on hit to the pacemaker site, that I could do more or less anything I felt up to. He knows that a few years back in my early 60's and while the AF was controlled and I felt good, that I was white water rafting down the payette river in Idaho with some cousins.🤣
So if you're trying to gauge if I'm a little old 69 ( sorry forgot I've just had a birthday) lady at home knitting faster than before, I'm not 🤣)
All jokes aside, it is a big decision and it doesnt work for everyone but boy am I thankful for it. Wishing you lots and lots of luck.
White water rafting to tramping graveyards 😂 but sounds like you’re having a great time. You say doesn’t work for everyone - by that do you mean they don’t go for it at all or left feeling worse - I’ve only read the positive ones so far! Thank you for letting me know how yours went x
Ha, yes it wasnt much of a comparison was it! Havent had the opportunity to do the white water rafting again YET 😘.What I was hopefully demonstrating was how much life and energy the permanent AF was taking out of me and how ,withing the space of a few months, my energy is returning.
If you read the NHS info on pace and ablate it will tell you that not everyone benefits from it, though I think that they are in the minority.
I do know of someone who after the procedure, hasnt felt the benefits yet but they are tweaking her pm settings and hopefully, that will sort it out.
yes I did get what the upsides were that you demonstrated - just had this funny picture come in my head of you raft like crazy then taking a pit stop in the grave yard ( my warped humour I guess) I will look at nhs - think I’ve checked it out before not sure - thanks for uplifting me x
I’ve also heard of digoxin working well. (Never been offered it, but I have a low resting heart rate despite the persistent AFib and high walking rate.)
Also, there are people who have improved with a pacemaker, without even needing the AV node ablation. We are all so different, and medications seem to affect us all differently too.
I’m crossing fingers that the digoxin keeps working well for you - you really need a break!
Hi. I've been on Digoxin 190mg for 12 years along with Bisoprolol Adizem xl Ramipril and Rivaroxaban. I am no longer in heart failure as the meds have done their job. I am permanent AF and have been for the whole time.
I've never been offered anything else as this option works for me.
Hi, I was put on digoxin in hospital when I could not walk far without being breathless. When I came home my HR was still high the ep told me to take an extra half a tablet and went straight into nsr. I was then told to stop taking it. I had no side effects but was not on it for long. I do hope you get sorted and start feeling better.
it had done its job i think. I’m on entresto for heart function. When i was first diagnosed and went urgent care as heart rate very high the consultant mentioned digoxin but cardiology told him to double bisoprolol, if id known then i would have agreed to digoxin!
Afibflipper I have been on the same dosage of digoxin (lowest) for about 18 months. It was changed from amioderon. I do have afib every 2 or 3 days but I don't feel it. I check on my watch daily now.My normal HR is now about 72, when exercising around 120 ish but does sometimes go up to 150ish,
I don't really get breathless other than the effect of the exercise ie cycling up hills. Again I don't feel the higher rate.
I have never been talked to about pace and ablate and it was never mentioned that digoxin is the last resort.
I do not remember having any side effects when changing to digoxin either other than it can take upto 3 weeks to kick in.
I am just a youngun too (compared to you) 😁 I am 57 next month.
Brilliant news for you, keep it up -(I’m 59 soon 😆) we’re babies) I mean the digoxin may be my last resort and the P&A as everything else seems to have been tried already (maybe an ablation left) usually I’m pretty calm just sometimes I feel I just got on the train that is suddenly careering to the bumpers at full speed - I got rid of the palpitations for a number of weeks with a CV last year, then rid again following ablation but now it’s back all the time right now but thankfully I don’t feel it it’s the watch that reads it. And if the Digoxin takes 3 weeks then it definitely is beginning to work on me at 2 weeks of 125mcg daily - My money is on Digoxin right now then - keep cycling & take care x
I have been on Digoxin for 10 years. I have persistent AF. Digoxin has given me alife! I can not take other drugs. It may be derided by some newer doctors but, if it works take it. Louise
Good to hear that it’s worked for you -what dose are you taking? I’m on 125mcg daily (I’m still on everything else as well at the moment - I feel I have my own pharmacy here right now - keep well x
Manchester but I’m fortunate to have private health with husbands work - the EP I have I currently trust a lot I just have a very complicated medical history that very often reacts badly to drugs or symptoms to begin with are very vague or conditions don’t follow a textbook scenario. I’m on Bispoprolol, Losartan, Apixaban, Flecainide, Digoxin for heart - won’t rally the other conditions and drugs 😂 How about your base/authority you trust who are they? X
Im on dronedarone, digoxin and apixaban. I had 3 ablations last year that have not had any positive impact unfortunately.
They put me on digoxin following 2nd ablation when my heart rate refused to drop below 140 despite the meds, another cardioversion and a stay in hospital. Seems to keep it a bit more under control. Though still too high. Usually around 100.
Heading towards pace and ablate but, like you, I'm told I'm too young yet (47).
I've had af for 18 years and it's now classed as permanent following these unsuccessful procedures.
They'll be reviewing meds this coming month and the focus, I believe, will move more to rate control rather than rhythm. I don't know if digoxin will then be ruled in or out. All to find out!
Virtual hug 🤗 for you Fullofheart, I thought I was young at around 40 (think I had it longer tho’) so many young people have it! And you had 3 ablations in one year 😱 ( I’ve had 3 but over 15 years, the last was Nov last year with 2 CVs last year.) What dose Digoxin are you currently on?
My EP did say we could try to abate again (but not sure what bits are left to ablate! My own theory (ha like Im a dr) but the last CV lasted 7 weeks, the Nov Ablation was another 7weeks - I have a hunch, may be silly but I’d like to suggest to him a possible increase in the digoxin as to me it has made some difference, see what that did and if it improved again HR wise maybe ask him to check around if there are any sneaky AF sites (flutter or fib) - even though I was pretty ill after the last one it somehow how feels the best option (today - maybe not tomorrow)
Hi. I had a cardioversion fail Christmas week. Originally I was to be put on Tikosyn and kept in the hospital while they tried it on me. With the failure, they canceled the rest of the treatment. I, too, was put on digoxin, and it was the only thing that made a difference with my heart rate in a very long time. I had tachycardia in the 150s at least this lowered to about 100 or so which is still a big difference. Unfortunately I have a history of medication failures along with everything else having to do with my a fib and a typical flutter. After two weeks my heart rate was in the 120s so my EP doubled the amount. Again it worked, but again only two weeks. he had wanted to try me on it for a month to see the results. We had already talked about P and A
I had it done on 27 February.
You are young, but it looks like you are already where I was as you know, there is no cure for a fib, but there is quality of life to be considered, especially at your age. Do you want to spend your entire life going through what you are now until your heart gets a break you will continue down the path of heart failure I know because I just started that journey. There is no physical exercise to strengthen your heart. Unfortunately, it is out of our hands.
Your comment on a fib, not being taken care of by a pacemaker and ablation is not quite right. Yes, it won’t go anywhere however, with the ablation of the AV node, it doesn’t matter if you have a fib because it says if you buried it under concrete. Without the AV node, a fib has no voice with your heart. That is what the pacemaker is for. The pacemaker controls everything for you. I also have a typical flutter. The pacemaker does not help that however, it has never bothered me that much and it’s not damaging like a fib. I have had few flutters since the pacemaker. I also had some palpitations in the beginning which is considered normal. They have stopped at least for now, and it was no different than when you had a normal heart and would get excited.
I don’t know if you had seen my post where I went into length about my particular pacemaker. They are not all one size fits all. If you don’t have an EP who knows this. Please find yourself another. I have no other heart issues and the heart failure is because I spent over eight months with a heart rate of in the 150s that is what did the damage and stopping that is what will also give the opportunity for my hard to strengthen. My pacemaker only came on the market in the US and October endorsed by the FDA. I did speak with someone on here in the UK that got one on Dec please talk to Nanny Sue we could be twins, but she is they are where you are, so could advise you better than I. I was told prior to this type of pacemaker I would have continued into heart failure because the other would not help my particular situation. Both of my ventricles were out of beat among other things. I am blessed to have a doctor passionate to give us quality of life. He had told me that getting the pacemaker and ablation could be life-changing and it already has been. I’m not 100% but boy am I close considering it’s only been a couple of weeks. to not have crushing chest pain and all the other horrible things that I was having, and just pretty much only been able to be a lump on the couch. I have only had a fib a couple of years and this is how quickly damage was being done to me from it. Don’t wait if you can find a doctor to do what I got. Why waste your youth and yes, you have youth right now. You are also stronger right now, so perhaps he will he’ll even quicker. Afib does not discriminate with age. The disease needs to be treated. You may be 57 but your heart might be my age right now because of what it goes through. As I said right now, my doctor believes my heart failure can go away because it is the beginning and now my heart is resting. Right now I am set at a heart rate of 80. When I see him in May he is going to lower it to either 60 or 70. Because my heart rate has been so high 80 is quite a drop for me, and I was dizzy in the beginning, but only a few days. the pacemaker also gets set so it anticipates when you are doing things and you will get a higher rate it is the wiring that makes us very different. It is called HIS pace bundling it has a Bluetooth app that runs in the background to monitor 24 seven. I have a hotline number to call, which puts me in touch with my clinic, which is actually my doctors group also 24 seven. The app will send them transmissions, and they can even do things without you being there.if necessary. I can’t say enough about how amazing this is. The technicians are almost as if you have another EP they are so knowledgeable and great to talk to.
Medtronic is the company. My pace maker is called AZURE. HIS pace bundling as I said, evidently is the key to it.
I am not pushing pace and ablate but oh my goodness, except for your age you sadly sound like me after only a couple of years. I had honestly reached a point where I didn’t know why I even existed, because not only because of how I felt, but I no longer felt like a human. My doctor gave me my life back. He kept telling me about a special pacemaker. I thought he was being a bit silly until I found out it is very true. when the technician came in after it was done, she actually had to make a call because she did not realize the pacemaker I had in and told me how amazing it is
I am definitely not a doctor. I can only share what I have just gone through, and I am still going through it as I heal. I have no regrets at least not yet. If you had spoken with me when the doctor first mentioned this, you would’ve seen a much different person. I wanted nothing to do with it. I felt as if I had been put in a box marked old. I had a list of questions and the reason I adore my doctor is, when we sat down, he gave me answers before I got to ask him my questions he speaks to you not at you. It became clear to me how passionate he is about us having a life worth living. He evidently is not the favorite child of the hospital because he does not believe in doing things like cardioversions and oablations over and over and over again. Same with medication when you have tried as many as you and I have. His attitude is they aren’t working why are we wasting time and your life?
At 57 you have plenty of life to live. I have no doubt you want to start sooner than later. Bob and others on here have pacemakers. I don’t know the ages when they got them but when I was worried, I had so many wonderful people on here. Tell me what a difference it made for them. It’s not your age it’s your quality of life and the fact that you have pretty much run out of options like I did. I put my pacemaker recently being available as a miracle to me. There aren’t many out there when it comes to a fib just so you know.
Hi Dawn, just read your reply above and thank you for all the detail. I have been trying as best I can to keep up with your post an yes all seems very promising. My EP is also concerned about the infection risk (don’t know if you have seen my posts since Nov - I have asthma, now Bronchiectasis and have been resistant to antibiotics I’ve been given over the past months has all added to the fear factor. You’re right in what you say about getting life back - the complexities are a bit overwhelming at the moment. I have copied your information about your PM Azure /His and will read up definitely so thank you for that
I hope you continue to improve and I shall be keeping an eye on your posts xx
I have permanent A Fib for 7 years and been on 125 of digoxin every day since A Fib diagnosis have blood tests every 12 months also on Bisoprolol 125 mg I am 78 and at this moment in the Canary Islands and our hotel is at the top of a large hill and most days I can cope walking up and down so for me Digoxin and bisoprolol are the only treatment I have had so works for me but we are all different
oh sounds lovely - a holiday think I need one. Well I’ve got my BP sorted, it’s brilliant with 25 mg Losartan which was originally 100mg. Last year Bisoprolol was up at 15mg in one dose but it went down to 2.5 - 3.75 but unfortunately back at 12.5 currently in split doses 7.5 in morning & 5 at night. Still felt awful but definitely digoxin 125mcg has helped but not for hills (yet) but I’m hoping I’ll get to your staged and on a holiday 🤗🌞🏝️ thanks for sharing your info x
I was on 2.5 of bisoprolol in morning and 2.5 at night but after 3 years the dose has been reduced to 1.25 at night only but digoxin dose has stayed the same at 125 been steady now for 4 years
I'm not able to answer your question about digoxin Flipper, but have been interested to read all the information your question has evoked. So I just wanted to say that after all you've been through, maybe this medicine is here to take the pressure off you for a time, giving you the chance to get your general health stronger before any big decisions. Your body has had a few big shocks. Sometimes the best thing for our health is to just be in the here and now and if the digoxin is helping with this then let it work it's magic, keep being you (which is way more than your illness!) and don't be afraid to go for second opinions if that's possible. Good luck and hope you keep feeling better xx
Lovely to hear from you as always, how are you doing now? I think you hit the nail on the head there - I said to someone as a reply earlier that I think after everything I this the panic came strangely as I felt a bit better (sound very odd I know) I think maybe the reality of how ill I’d been hit late and I thought I could get worse again, so I went in a spin just wanting it to all just go away! No magic fix, but like you say if I can just slow down and think outside the box instead of bouncing of the walls I’ll be able to (as I put in a previous reply) slowly get off my woe is me chair now and enjoy feeling a bit better rather than worrying what’s not even happened yet 🤗🌤️
Just keep being kind to yourself Flipper, that's what I'm trying to do. So today all plans go out the window cos all I can do is rest up, barely managed a 15 min walk. Working my way through all the relaxation exercises on my Balance app - when I'm not dozing! Yesterday I was out all day at a gathering of friends and felt very odd standing up, but fine sitting down. Very variable day to day, so trying to adapt my life accordingly! But don't beat yourself up for having a panic or worry. It's a normal response to the trauma these conditions put us through! Xx
It is very much no 2 days the same isn’t it! I too suffer the being ok when sitting but getting up and walking off tends to sometimes induce effects that are disconcerting to say the least. It’s good you got out with friends though. For relaxation have you tried the app called Headspace - I found it quite helpful last year, you can choose the voice of the person you wish to do the sessions with, the guy on there has a very relaxing voice and talks the meditation relaxation through as you do it. As you say each day as it comes, keep up the good work, take care xx
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