As it’s quiet on the forum today, I thought I’d kick things off😊
I had my long-awaited phone consultation with an NHS EP last Friday. I’ve had five AF episodes in the past year and none ( touch wood) since July when I started implementing some lifestyle changes. I have previously been given Bisoprolol as a PIP. The EP is firmly of the opinion the AF will definitely get worse and the only answer is an ablation. He’s also of the view that no one keeps lifestyle changes up, so isn’t interested in supporting me in those endeavours which is fair enough, as I’m sure he’s inundated with patients in a far worse situation than me who are desperate for an ablation.
I did find the whole thing a rather negative experience, I must say and so thought I’d cheer myself up by posting here and seeing who else is having a go at dealing with their AF by lifestyle/ alternative means.
All comments appreciated, thanks!
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Threecats
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Hi Threecats, well it's actually a bit of a stark choice. You can either learn to live life with AF and use medications to try to suppress it, and maybe suffer some of the side effects of those, or try ablation, which can work really well, not work at all, or need several attempts before there's success. And so it has to be an individual choice, together with the advice of health professionals. There are pros and cons on both sides. There are new treatments coming online, one of which in particular is now being used in US so there's always hope that in future, we can be better helped. As usual this can boil down to the cost, who can afford it, whether as an individual or as a nation to provide it.I find it quite an unpleasant condition to live with, but it's always worth bearing in mind that, so long as you take care of any possible need to prevent clot formation in your heart, it's generally speaking not a life-threatening condition, so if you choose to have no further interventions, that is an option for a few people too.
Thanks Callendersgal, you're quite right, when you boil it down the choice is straightforward. At the moment I am fortunate as my AF is not too frequent and so I'm happy to tick along and live with it for now, As you say, new treatments are being developed and so I've no need to rush into anything at this stage.
Seems to me that you caught your EP on a bad day which is not very helpful for you but we're all human!We all know that lifestyle changes will make us feel better, AF or not, so always worth putting into action. Whether or not these are sustained will, I would imagine, depend on the benefits felt.
I opted for a fourth ablation recently after much hesitation and am pleased I did. I've had 28 years dealing with the vicissitudes of AF, A/flutter, tachycardia etc and exhausted all treatments save the ultimate pace/ablate.
Carry on with your lifestyle changes. You may well feel that this is all you need to do.
Hi Threecats, I can relate to your post. My EP also seemed to have a bit of a negative attitude to ablation. Having told me all that can go wrong which I know he has too, he made it quite clear that ablation is very rarely a cure, it’s to give you a better quality of life and you may have to have them repeatedly. I thought long and hard and finally decided against having it. I now have permanent AF and am managed with medication. I did make some lifestyle changes in particular cut out all Caffeine which helped a lot. However I struggle with walking far especially uphill as get breathless, I am 70yrs old apart from that manage quite well. I guess it’s up to each individual the decision they make. Do your research.
Thank you for sharing your experience Florence, that’s very helpful. Cutting caffeine has certainly helped me, too.
There will be plenty of research going on here for a while, I’ve just downloaded a couple of books by Hans Larsen that will be keeping me out of mischief for a bit😊
Hi Threecats 😀 I can prove your EP wrong in that I have 'kept lifestyle changes up ' they have become my lifestyle so much so that when I go away for a holiday in a cottage with the family every year I have a bit of a problem with my odd regime eating different foods at different times to everyone else .
I haven't stopped the progression of P-AF but think I have at least slowed it down over 5 years.
I have resisted having an ablation so far for a number of reasons but am struggling at the moment since I tried an anti arrhythmic drug that has sent my settle pattern of P-AF into turmoil .
Hi Doodle, thank you for your reply. Good for you the lifestyle front 👍 I'm sorry to hear of your current troubles though and hope that things settle for you soon.
Ther are a number of aspect to your post so I will attempt to answer all of them.
Firstly it is important to understand that AF is not a life threatening condition though it may be life changing.
Secondly life style can and does reduce AF burden as shown by the LEGACY Trials in Australia a few years ago.
Thirdly AF is usually a progressive condition so the earlier you can slow it down the better and while ablation may need repeating it can be successful.
Fourthly (and from my own experience) if you have AF you may well be prone to arrhythmias and subsquently develop a different one if the AF is terminated. I had ten years between mine and worth every second! #
Finally and here I quote Prof Richard Schilling, one of the top EP si England who told me "Any and All treatment for AF is only ever for quality of life. "
Hi Bob, thank you for your reply and very interesting comments, particularly your fourth regarding the possibility of developing different arrhythmias if the AF is terminated. That's given me something to ponder 😊 As Prof Schilling says, quality of life is key in any decisions made regarding treatment.
Hi all,I live in Kent UK, in permanent asymptotic AFib, diagnosed 3 months ago and have been taking Apixaban and Bisoprolol daily.
I had a Cardioversion which lasted 11 days last month and received a telephone consultation with my NHS Cardiologist yesterday.
He was really enthusiastic that I have lost 70lbs in the past 13 months through a low carbohydrate way of eating (Ketogenic) which predates my diagnosis and am now averaging 4,000 steps daily (from a few hundred during lockdowns).
I also monitor my blood pressure and heart rate with my Apple Watch and Lloyds Blood Pressure machine, both of which recognise that I am in AFib.
He recommended that I can reduce my Bisoprolol to half dose daily and ultimately stop taking it as my life style changes have made a difference.
He has booked me in for a Echocardiogram to see the condition of my heart before we decide the next options.
My anxiety has reduced dramatically following the consultation, he was so positive and encouraging.
There are around 1.4 million diagnosed AFibbers in the UK, everyone of us has a different path to pursue.
Wow KentAndrew, congratulations on your weight loss, that’s a fantastic achievement!! I’m very pleased you’ve had a positive experience with your cardiologist, too. As you say, we all have to follow our own path. Good luck to you on your continuing journey.
Well done making enough changes to stop AF since July. Whatever you are doing, keep doing it! But maybe go on the wait list for the ablation? I don’t know if you were given a time scale, and mine was brief but others have had long waits, and Covid, staff shortage, winter and other issues may make it longer… Then you can see?
That’s a good point FaberM , thank you. The EP reckoned the wait at the moment is about a year here, so I’d have plenty of time to see how things are going on the Lifestyle front before I have to make a decision.
I have stuck to Lifestyle changes and continue to make them, determined that my past experience of AF will be the driver to better choices and better overall health post 60yo. I think you need advice first from a cardiologist to stop those episodes and then if your overall quality of life is good postpone that ablation. Some early advice I received was, if you go to a carpet salesman ( an EP) he will sell you a carpet.
Hi Secondtry, thank you for sharing that. I’m pleased to learn you’re still plugging on with your lifestyle changes. You’re right about your carpet salesman quote! Years ago I developed Rheumatoid Arthritis and a couple of my joints were immovable due to the disease. I was told by a consultant that I’d never move them again and would need the joints replaced - they happened to specialise in joint replacement surgery…. I passed on that advice too and eventually got movement back in them, although it took a very long time and a lot of perseverance , so I’ve got “ form” when it comes to making changes stick😀BTW thank you for the post about breathing you made a while back. I obtained the James Nestor book on the back of it and realised I’ve been breathing incorrectly for most of my life! Something else to work on😊
You can try the protocol this guy worked out which has left him free of ectopic beats and a-fib for the last 8 years after having had a-fib for a similar amount of time.
I'd really like to recommend a book that was published in 2021 by Drs. John Day and T. Jared Bunch who are both practicing cardiologists and have dealt with thousands of "fibbers". The intriguing title of the book is The AFib Cure. I've only had it a few days and I've almost finished it. I must say that they do hold out hope in getting off the medications but it certainly takes commitment to make it happen. Well worth a read about all the aspects of the affliction which share. It certainly answered a lot of my concerns and questions. Timing is a major factor is making very important choices in dealing with AF.
Hi Racquet, thank you for the recommendation. I have got that book and it’s excellent, isn’t it. I read it after my second A&E visit with AF in June and started implementing changes straightaway. I’m pleased the book has helped you, too and wish you well on your journey with AF.
I want to add to the support for ablation. I have really benefited. And I don’t think the carpet salesman parallel is always accurate - there are many disincentives to adding to the NHS waiting lists and missing targets. Private medicine is different of course - I have certainly experienced that when abroad, recommended intrusive (expensive) treatment that turned out to be unnecessary. Of course the analogy is correct if the carpet salesmen has no knowledge of other flooring! Maybe your EP has little knowledge of lifestyle improvement effects or he may be wearied by those who are over confident about their efficacy for different people. As I have said on here before, I had no lifestyle wriggle room except exercise but arthritis limits that to strolls and a gentle swim. My diet, weight etc have been good for many years. I did sadly give up alcohol, a trigger for me.Good luck, inch forward and see how you go. I hope the AF stays away… mine did for four years then returned hence the ablation.
Hi again Faber, thank you for your further thoughts and good wishes . I’m very pleased to hear the ablation has been successful for you. In fairness to my EP, it was a brief telephone consultation and I’m not terribly good on the phone, even if I write questions down beforehand🙄 so it was a bit of a one way conversation. I’m sure he is coming from a place of treating it aggressively with an ablation sooner rather than later for a better outcome perhaps but not being able to discuss the pros and cons and other options was a bit unfortunate.
Anyway, I hope you continue to benefit from your ablation and thanks again.
Hi Threecats,I hope you don’t mind me replying to you., on your 5 month old post that I found! I am paroxysmal - had experienced palpitations randomly for about 10 years and then last year, I had approx 4/5 attacks in about 6 months. Mine too go to 180s and they were getting longer before self reverting ( about 10/12 hrs)
Since being diagnosed and taking a very low dose of bisop ( 1.25 and a quarter currently 😳) I haven’t had an attack since Nov, but not a day goes by that I don’t worry or think about my Afib. I am not on any AOCs.
It was interesting that your EP very much was pushing for an ablation, which I would have tomorrow, yet when I saw an EP for the first time in Feb and asked for an ablation, he said he wouldn’t do it & told me to go back to him when I’m worse 😳 I wish they were all consistent. I hear this a lot. I thought that paroxysmal Afib had a better chance of success with ablation.
Please can I ask where you are in the UK, just in case you are near and I can try somewhere else?
I am sorry to hear that you are struggling mentally with this challenging condition. I do know where you’re coming from. I’m based in East Surrey. The EP I spoke to is based in St George’s hospital. Happy to PM you with his details if you wish.
For me, following an escalation of episodes over Christmas, I finally starting taking the Bisoprolol 1.25mg daily in January and that has stopped the AF in its tracks. I’ve cautiously reduced the dose to half a tablet now and so far so good.🤞I’m not on ACs either.
I’m glad to hear the Bisoprolol has eased your episodes, too. I am also a very anxious type and, like you, initially spent a lot of time thinking about AF and being poised, waiting for the next episode. However, I have finally started working on my anxiety - something I’ve studiously ignored for years! That is making a big difference to my outlook on AF and life in general. Feel free to tell me where to go but would that be worth looking into for you, too?
I do get the impression that having an ablation isn’t necessarily a guarantee of a cure and I suppose , as you have been AF free since last November on such a small amount of Bisoprolol, your EP felt that the, albeit small, risk of doing the procedure wasn’t justified at this stage. To be honest, I would rather have your EP and his more moderated approach than mine!
Sorry, I’ll go now before you damage your phone by throwing something at it 😂
Thanks for coming back and please don’t worry about your reply, not at all, I know my anxiety gets the better of me! 😳
You are right, I know….re: my EP being cautious. I only had an ‘attack’ last November, because I’d come off the bisop literally within the 24 hrs leading up to it. I’d only been taking it 2 months and that was 2.5 mg back then. I know that it’s the bisop that makes me feel not myself and the plan is to go to 1.25 as soon as poss ( I’ve tapered from the 2.5) as HR is going too low very regularly now, but that’s another issue! Your Afib does sound very similar to mine and tgat bisop seems to control it. The EP I saw told me that bisop on its own doesn’t control Afib and suggested it was all in my head and that bisop was stopping my anxiety, but if anything , i think the higher dose made it worse.
I am seeing ( or speaking on the phone lol) weekly an NHS psychotherapist for anxiety, tried some CBT with her too, which actually is working, I do recommend that as well if you are able. Thanks for offering to help with that though, I am getting there and it has actually improved, it was much worse than this last year 😊
I think Surrey is a little out the way for me unfortunately, if I had to have an ablation there, I’m in Essex….just that little too far, but Thankyou so much.
I do wish you all the very best and do feel free to message me too, if you need any info about the NHS psychotherapy, as you can refer yourself on line.
Thank you so much Teresa, the CBT sounds good and I’m delighted to hear it’s helping you. I will certainly look further into it.
As you say, our patterns of AF do sound very similar and I, too, have been told the minuscule dose of Bisoprolol I’m on isn’t therapeutic as far as stopping the AF is concerned and so it’s anxiety. Not sure how that pans out in practice, as, when taking that little tablet, it knocks my resting heart rate down to the mid -fifties! ( Normally it is around 70) My own thought is that a lot of these older drugs particularly, were tested on healthy young males and I fancy they have a more profound effect on this dumpy post-menopausal woman😂
I’m sorry Essex is too far for you but I can quite see why it would be, particularly if you were to have an ablation. I do hope you’re able to find an EP closer to you who is more open to your desire to have an ablation sooner rather than later.
Thankyou - indeed we are very similar 😊 we’re probably same age too. I’m on HRT in a bid to overcome the dreaded post menopause ( which again is another story!)
My husband keeps telling me it’s my anxiety. The trouble is, my anxiety/adrenaline went into overdrive the day I came off bisop last year and it was quite scarey and worse than I ever had it before. My hr really increased drastically too within 24 hours, which in itself caused anxiety to rise….I had read about Bisoprolol withdrawals and some do get it bad. I would dearly love to try and overcome this anxiety without the need for Bisoprolol and try and come off it again, but this time a lot, lot slower. But, it’s also doing the job, so sometimes it’s better the devil.
Magnesium is very calming Threecats too 😊 I recommend that if you don’t take it already and it helps the heart. I take magnesium taurate and magnesium glycenate throughout the day and it does help.
Like you too, my HR was mid 70s pre Bisop and now it’s lowest is 54/55 during the day. I’m aiming to get it to 60 over the coming weeks.
It’s going to be a bit of a journey for us I think!
Yes, this menopause lark has a lot to answer for! I’m in my late 50s -still trying to work out where those years went!
I too, have been told it’s my anxiety and maybe it is but the symptoms are real enough ! Like you, I tried stopping the Bisoprolol but even though I’m on a minute dose , the ectopics and fast heart rate that started up were enough to get me back on it pronto! My understanding is that, as the Bisoprolol blocks the adrenaline receptors in the heart, the body adapts to that and so, when it’s removed, there’s suddenly a whole lot of adrenaline receptors ready to receive and react to any adrenaline we release and so even small amounts will produce a dramatic response for a few weeks until the body restores the balance. The problem is that I’m not sure I’ve got the bottle to ride it out🥲 I have tried a quarter of a tablet but things started getting very lively in the ticker department so I’m back to a half tablet for now.
The echo I had last year revealed that I have a moderate leak from my tricuspid valve and that has caused my right atrium to enlarge. When I spoke to the EP in May, he wanted to repeat the echo this year to see if it’s got worse but he failed to mention that in his letter to the GP. When I spoke to him again in November I asked about that and he said he would check it when I had the ablation. When I said I didn’t want one at the mo he got quite irritable and said when I couldn’t breathe I’d know the valve was causing problems! I wasn’t happy with that, so I’ve booked a private consultation with a cardiologist for later this month ( Covid permitting!) to discuss that particularly. I figured I’ll stick with the half tablet for now and see what he says before I try to cut it down again.
Thank you for the magnesium tip. I have been taking it on and off for a few months. I’m not completely certain it doesn’t cause some issues for me, as I was taking it consistently over Christmas when I had an escalation of episodes. It’s awfully difficult to work out what’s causing what, sometimes, isn’t it!
Anyway, you’re right, I think our journeys are going to be marathons rather than sprints😊 It would be good to keep in touch, if you’re up for that of course!
Sorry to hear about your heart issues and the discussions you’ve had with your EP and cardio etc. I have seen a cardio twice and had to book a private consultation with an EP ( otherwise I’d prob be waiting til next year still!) so we are similar again in our quests to get answers with the ‘professionals’. I can see why you are a bit weary of the EP due to his reaction to you not wanting an ablation right now.
I think we have to try and work out what’s best for us on our own sometimes, as best we can, as we know our bodies. It’s good your EP writes letters, even if they miss info - I’ve spoken to my cardiologist once on the phone and seen him twice and there’s only been one letter. The EP I saw in Feb, never wrote a letter of our conversation either 🙄
My heart is structurally ok according to the echo, though I have some concentric remodelling on my left ventricle, which I only found out from his first letter. When I asked ‘ Dr Google’, it told me I was going to have heart failure 😳but every time I’ve asked about it since, I’m told it’s quite normal and the remodelling is quite small. They say that high blood pressure can cause it and I’ve never had high BP, in fact it’s always been quite low (even lower with bisop of course) so they always shrug.
Ah, so you’ve experienced the withdrawal of bisop 😳 it’s terrible isn’t it? I’d read about those receptors too….and like you, I am not sure if I can ride it out, the longer we are on it, the worse it will be though, to ever get off it. But I am scared as I hate having an Afib episode. Funny thing is, for the ten years I randomly had them, I was in ignorant bliss, thinking they were palpitations and I ignored them and didn’t give them another thought - if only I could be like that now. I have Fleconaide to take as a PIP in case of an attack and I did take that on the last one for the first time - I had to take 300 mg which is the max daily dose and that scared me too…especially at midnight when I was having the Afib. I took 2x150mg and it was a bit of a regime, but it stopped it after 2 hours. I did feel odd after ( a bit ‘wired’ 😳) for about 24 hrs and experienced a few chest pains which I never usually get, so I’m not sure if it was the fleconaide. If you get an attack, have they given you something to help stop it, or do you just wait it out?
A lot of people on this forum say that nebivalol is what they switched to from bisop and they were happier on that ( less side effects apparently) My cardio also said I could switch to it if I ever wanted to. I did put up a question about it on the forum. The responses were that it could be a bit of trial and error in doses as it doesn’t take HR down quite as much. What was interesting was that bisop has a small amount of anti-Arrythmia effects in it, which could also be what’s helping us both perhaps. I am weary of switching in case it doesn’t do much.
Sorry to hear about your escalation of episodes over Christmas and can understand why you are cautious about the magnesium. It is hard to know what causes what, I definitely agree! I take quite a few additional supplements now, changed diet etc in the hope to beat this thing!
I’m 56, so not far off yourself & yes, would love to keep in touch 😊 we can compare notes!
Hi TeresaYes, I think you’re absolutely right when you say we have to work out what’s best for us on our own sometimes. We all respond so differently to drugs etc. I swear I could hear my EP’s eyes rolling when I tried to explain the dramatic effect the 1.25 mg of Bisoprolol was having on me! I’m sorry you didn’t get letters after your appointments. I find it’s hard enough trying to remember what’s been said during these appointments and not having a follow up letter must make it doubly difficult.
I’m glad to hear your heart is structurally ok . Dr Google is a bit of a nightmare isn’t he! I “consulted” him about my right atrial enlargement and wished I hadn’t as he predicted a very gloomy outcome!
They haven’t suggested I take anything other than an additional Bisoprolol during episodes. Unfortunately, over Christmas I was having episodes up to 18 hours long every few days and, whilst the extra Bisoprolol kept my heart rate around 100 instead of it galloping away in the 180s as it used to do, it didn’t help convert it back to NSR as Flecainide might do. I’m not sure whether I can take that drug, though, as it seems you have to have a structurally sound heart and I’m not sure that mine is. That’s another question for the cardiologist when I see him on the 19th😊 I’m glad it did the trick for you, although the side-effects sound “interesting”😳.
I don’t know about you but all my episodes so far have happened at night which seems to make it feel much worse, doesn’t it. I’m on my own here too ( my husband died 6 years ago) and that doesn’t help, although the cats do their best to distract me by either demanding food or bringing in various examples of the local wildlife for me to admire😳 😄
It’s uncanny how many similarities we have as I have also had some palpitations ongoing for 10 years. Had a couple of dramatic episodes checked out initially and dismissed as “one of those things” and so occasional flurries I had in the intervening years I never gave a thought to! As you say, a different story now!
I’ve also read with interest the discussion threads on nebivolol and, like you, feel that, on balance I will stick with the Biso for now on the “better the devil you know” basis but it’s another question for the cardiologist 😊 He’s going to be fed up with me when I’m done but I’m determined to get my moneys worth!
Anyway, if I find out anything useful following my appointment I’ll let you know! I think we’ll have plenty of notes to compare😊 I’m 57 by the way, so not far off age-wise. Mind you, some mornings I wake up feeling 90😂
I am sorry to hear you are facing this on your own, but I’m glad you have your cats as company 😊 I also get the attacks at night, just as I try and drift off to sleep, or about an hour or so after a larger dinner, if eaten particularly late and 9/10 it was usually on a Saturday night too and after one or two glasses of Prosecco 😃 I think we are ‘vagal’ when that occurs and they also say that beta blockers don’t help vagal Afib, but I think we prove that they do. I’ve read others that are also helped by beta blockers for vagal.
I hate it when I see Doctors roll their eyes! I know exactly how you feel. I’m sure they think we can’t see it. The EP that I saw did that, when I told him that Bisoprolol gave me a lot of side effects that never went. I know he wasn’t really listening to anything I said, as I told him I’d tried once unsuccessfully to come off and I was at that time, intending to try again if I can and he suggested that if I did wean off completely and if the attacks got worse or came back, I could take daily flec with 1.25 mg Bisoprolol daily 🤷🏼♀️ It was as if everything I’d told him had gone in one ear and out the other. I gave up then. Definitely try and get your money’s worth. My appointment was over in 20 minutes.
I think Flecainide does have to have certain aspects of the heart to be stable enough for it, you are right, but I’m not sure exactly what the protocols are but yes, make a note for the cardio definitely. It is an old drug and much older than I thought so tried and tested, but it is very potent too, I suppose it has to be for what it does. They gave me 5 mg bisop to convert when I was in A&E and got diagnosed the first time.
I got a bit addicted at Google at one stage, looking up Afib things all the time and I have thankfully stopped. It does nothing but fuel the anxiety even more. There are loads of studies on there for afib, but they’re quite obscure and when you dig deeper, they studied not many people and there are loads of caveats. Also lots of differing information which is contradictory across lots of sites so you don’t know what’s true and what’s not. I gave up and only really look at the NHS site and other more noteable ones now. It is the devil!
I also had episodes checked out at hospital like you….I wore a monitor for 24 hours a couple of times and they found nothing untoward as well. Oh, if I could only we could have those times again, sigh!
You put yourself as ‘late 50s’- you could have said ‘mid fifties’ lol, at 57 😊.
Hi Teresa, ok, go on then, I’m happy to go with mid-fifties😀
Yes, definitely with you on the large meal eaten late in the evening being a trigger, as is anything spicy, sadly and alcohol is completely out for me😢 Often I would wake in the small hours in AF. I was tested for sleep apnoea a few months ago and was found to have a mild form. As I have AF I was given a CPAP machine to trial ( they don’t usually bother for mild apnoea apparently) Unfortunately I just could not get on with the full face mask and found it very claustrophobic. I’m mildly asthmatic and found it was triggering that - couldn’t take take reliever salbutamol inhaler either, as it triggers the AF🙄 Honestly, I’m glad I’m not a horse as I fancy I would have been shot by now😂 I still suspect the apnoea plays a role as I wear a little device that records my heart rate at night and I can see how my heart rate leaps up when my O2 levels drop, even with the Biso but at least that stops it kicking off into AF. Like you, having convinced myself I have vagal AF I was terrified to take the Biso at first as I was certain it would make it worse!
Anyway, sadly, I can all too readily believe that, after listening to you talking about the side effects you were getting with Bisoprolol your EP totally ignored you and recommended taking it with the Flecainide 🙄 It’s even more galling when you’ve paid for a private appointment too. I’ve just paid £200 up front for the consultation, so if it’s as long as yours it’ll be £10 a minute😳!
As for Google, it’s definitely not a friend when looking up health stuff, is it! I have found the book “ The AFib Cure by Dr John Day to be very informative . Have you taken a look at that one yet?
Talking of looking at things, I’m sure you saw the post by Denboy a few days ago asking if anyone knew of an EP in Essex? Just in case you haven’t, here’s a link to the thread - hopefully!
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