I’m a bit fed up. I wrote a couple of weeks ago about the fact I’d arranged a private appointment with an EP at my local hospital this week, as I was fed up with waiting for a follow up with my cardiologist which should have happened in January. I’m paroxysmal AF, formally diagnosed last September, after infrequent attacks for about 10 years, though they were coming every three weeks for a few months leading up to last year. The diagnosis has really affected me and my life quite badly and my only hope seemed an ablation. I don’t take any AOCs and I’ve been told I don’t need to, until I’m 65. Despite the fact my heart rate can go into the 180s for hours.
I’ve been on Bisoprolol only since September for it. Initially 2.5 mg and I hate how it affects me ( I know some of you share my feelings of bisop) so I tried coming off in Nov and went straight into Afib. I took fleconaide with propanolol as a PIP and reverted in about 2 hrs. After briefly trying atenolol, I grudgingly went back on Bisop. I intend to try and come off it again by late March and am doing it a lot slower and am currently on about 1.6 mg. It is still stopping my Afib.
I can’t take any calcium channel blockers as they all interact with another med I take, which is carbemazepine. When I do eventually need an AOC, the only one I can take is warfarin. Currently I cannot take any if the newer ones, due to this other medication. So my medications are limited.
So I saw the leading EP at my hospital in hope of an ablation and he basically won’t do it. He said I need to be a lot worse and to go back to him when medication no longer works for me. Great. He thought it was wonderful that bisop is controlling my Afib and I haven’t had an attack since Nov, despite me telling him all the side effects I get, (including severe tinnitus, breathlessness and sleep deprivation, even in a low dose😳) and suggested that if I did come off it and my Afib got worse, to take Flecainide daily - 50 mg x2 and Bisoprolol 1.25. This is despite me saying I don’t get on with bisop. He wasn’t really listening. I was just really down as they always blame anxiety and it’s the Afib causing anxiety 😳 He said that bisop alone shouldn’t be stopping my Afib and thinks that my mindset of thinking Bisop is stopping it, is stopping the afib ( if that makes sense)…
I was expecting a bit more I suppose. Not sympathy, not even empathy really from him, just a bit more ‘understanding’ perhaps of where I was coming from. In the UK it seems they just wait for Afib to get worse and untreatable before an ablation is done, rather than try and prevent it from getting worse. I did think ( wrongly obviously) that being paroxysmal, I’d have a better chance of success after an ablation but he shook his head.
I’m trying to up all my nutrients and vitamins and am taking magnesium etc in the build up to coming off. I am doing all I can to find tune my diet etc.
I just worry about the future and the possibility of my PAF becoming persistent or permanent, because I will try and get off bisop again if I can but I know it’s not easy. I worry about a possibility of a stroke. My head is in a spin.
I don’t expect any of you to know any answers….I just wanted to rant really. Thankyou and sorry such a long post!
Teresa
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Teresa156
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Hi Teresa156,Sometimes a good rant is as good a therapy as any, and I hope that getting it all out there has helped a bit.
I can completely understand your frustration and disappointment. Unfortunately AF of any kind does tend to be trivialised by the medical profession as a whole, because not only is it extremely common but not generally fatal. When you haven't had it, it must be tempting to put it all down to anxiety and hysteria! (I have a feeling that it's mostly those who have never experienced an AF attack themselves, or dealt with the sluggishness caused by some of the medications, who have the most tendency to trivialise it).
I wonder if you are placing a little too much faith in ablation though? Accounts abound, even within this forum, of how it worked for a while, or didn't work at all, so if that happened with you, what would your next step be? Would you refuse Bisoprolol as a treatment again while you weighed up your options? Because if you put yourself in that situation, there is your answer really.
I think that you can certainly absolutely refuse Bisoprolol on the grounds that it is too unpleasant and ask for more help with medications which will work better for you.
You could take the private route, but do think that through with regard to ongoing treatment in case the procedure later failed you, there are limited options for NHS follow-up allowed, once you've had the procedure privately.
Or you can become a nuisance to the extent that you continue to press for an NHS ablation and don't take 'no' for an answer.
So really, yes, you're probably right that this has to come from you, and we can only be of limited help to you.
But as for the rant, why not? This is a great place to safely do it!
Thankyou….you are right. I suppose I just expected more from him. I just feel a bit forgotten and let down by them all really. They just shove medication on to us and hope we get on with it. I swear when I was telling him my side effects from Bisoprolol ( and there are many, which have improved slightly as I’m reducing I have to admit) his eyes were glazing over and were rolling. I expect they just think ‘ just get on with it’. I just wanted to place a bit of hope on having a normal life without meds, by having an ablation. I wouldn’t have one privately for the reasons you mention….he does put people on the NHS List for ablations I’m told, even if seeing him privately. I’m obviously not one of them.
I suppose I’ll just have to wait for the inevitable of my conditioning worsening over the next few years and becoming unmanageable 😳 I am a glass half empty type of girl, I admit.
But, I’ll do my best and see if I can beat it one more time with no meds….
Persistent af should not be treated lightly ,you really need to find out what part of your heart is causing the problem. If it is the Ev node then an ablation should help. I as fittd with a pacemaker followed by a av node ablation 7months ago, so far doing ok. Good luck Teresa156
Thanks for your reply. I am not persistent, I am paroxysmal at the moment, controlled by Bisoprolol. I think if I was I was persistant and not being anticoagulated especially, I probably would have really tried to insist I had an ablation. The EP just wants me to wait until I get worse in the future and it’s unmanageable.
I do wish you all the very best Jimmy, it sounds like you’ve been through it.
Hi … my cardiologist immediately suggested ablation and l said “no way” … why do something to your heart that may or may not work? I have afib attacks maybe once per year … l was diagnosed with afib four years ago … is the risk worth the payoff? I say NO ! I have PAF just as you do … l don’t want them doing something to my precious heart that could injure it or kill me. That’s just my “take” on this matter. My husband is pressuring me to have one because he says that we really can’t travel extensively with my condition … ????
I do understand how you feel. A couple of years ago, the thought didn’t cross my mind and I was the same as you in how I felt. It’s just I was getting them every three weeks last Summer leading up to the bisoprolol and I am thinking, can I handle this? Can I handle a life feeling like this? An uncertain future.I don’t like that thought and it scares me. I want to feel like me again.
Rant away Teresa if it makes you feel better. It sounds like you don't know what to do for the best result.
Your Bisoprolol dose is very low, are you positive it's that causing your problem? There are other betablockers to try. I take a small dose of 12.5mg Metoprolol, which is a quarter of the standard dose 50mg, alongside my Flecainide.
Having AF often makes people tired and each attack can make us lethargic for quite a few days after.
Hi Jean … after an attack l am depressed for one day until l forget all about it the following day. It is ever-present in the back of my mind but it doesn’t disturb my happiness.It’s a strange ‘illness” … kind of like a curse of some sort … an inconvenience… incidentally, l take sotalol with zero side effects to speak of and infrequent attacks.
It's strange how our hearts all behave so differently and some drugs help and others dont. When I'd have a high rate attack it would leave me feeling drained for days. My GP would say my heart thinks I've been running fast for days.
These days I'm in constant low rate AF about 60 to 90's and I can cope better with that. I rarely check what it's doing, because I know if I do I'll make it go faster. To be honest after 17 years of AF I find the best thing to do is ignore it.
I also have an artificial additive free diet.
I'll never forget how awful it used be for many years.
Have you been looking at Bambi's posts oh here and how well she is after her ablation with Dr Wolff. He has a clinic in Texas, can't remember now but think it's in Houston.
I remember one of her posts … lf l should ever decide to have one, l will use his method and his services. Thanks for reminding me! We are trying the mostly additive free diet … it is helpful … also we have both stopped any alcohol. What a bloody bore!! I miss my martinis!!
The EP I saw was the opposite, he wanted to go straight to an ablation and I initially agreed but after reading lots of info and patient experiences I decided not to have it done, the risks of it possibly only working for a short time or possibly not at all meant it wasn’t a procedure I was willing to put myself through and he actually agreed with my thinking.
I just tick along on 1.25 of Bisoprolol and ablation is definitely not an option I’m comfortable with.
Thankyou for coming back. It’s interesting to read your take on it….and sounds like you are the same as me with managing it currently on a low dose of bisop.
Do you think you’ll change your mind if you get attacks despite the bisop? That’s my worry, as my episodes are quite intense as my HR goes into the mid 180s for hours. It’s the future I worry about…and being on these meds for life, or more and more meds that don’t control it. I am a worrier and some will say I am worrying unnecessarily ( I know the medics say that) but inevitably I do think it will get worse.
I was prepared to take to risk I suppose. I’d rather take the risk, rather than have the risk of it becoming unmanageable.
Sorry with late reply, been without power since Friday ! I think I would have to be pretty desperate to agree to an ablation, it’s just something I’m not prepared to risk. I have multiple health problems and enough to deal with without inviting more troubles !
However my brother in law had one a few months ago and he’s not had any problems since, he’s off all meds and totally fine, so it can work for some.
Thankyou. It’s definitely the bisop causing my problems. Before I took it, I’d sleep like a log and I didn’t have tinnitus. I have a strange jittery feeling ( not my heart) most days, like I’m a bit wired, but at the same time, I think it’s actually increased my anxiety over the Afib though I might be wrong. It’s definitely the bisop. I’m shortly going to go to 1.25 but holding off as I have to have some dental work done in next two weeks and don’t want to tempt fate. My resting HR is roughly 53 at times, even on this low dose and I have a low BP, as my BP was usually low pre- bisop. I don’t think I’m the usual candidate for beta blockers.
My other med carbamazepine I’ve been taking over 20 years and has never caused me any side effects.
I’ve only taken the flec once, last Nov, when I had my last Afib attack, I took it as a PIP (300 mg) with propanolol, which made my feet like ice, but I could cope as a one off.
I had chest pains on and off afterwards for a few days and a few ectopics which calmed down and I do wonder if it was the flec that caused that. I’ve never had it before after any afib attacks that were self reverting. The EP put that down to anxiety…again 😳
I can see why he thinks stay on the bisop…as at such a low dose you wouldn’t think it would stop my Afib would you? But I always think it won’t last as you never know when it will strike.
I’ve actually got a cardiology NHS appointment now for March which is late as it should have been Jan, but I will ask them what beta blocker I could try next. To be honest, I am wary, as they all do similar things.
Sorry long reply….I could write War and peace’ I think!
My Arrythmia nurse told me that chest pains are quire common after an AFib episode, I’m paroxysmal and get the pains for a few days after each episode!
Thanks Sue for coming back.Perhaps it was that then….I just didn’t used to get chest pains at all before….and I’ve had Afib on and off for years. I’ve never experienced those before or the flutters. Fleconaide is such a strong drug especially at the high dose for PIP that I’m on the fence about it really.
Your welcome, I take bisoprolol, 5mg am and 2.5mg at bed time! Plus rivaroxoban. They do make me tired, but then I can’t sleep when I go to bed!! Waiting for scan of arteries!
Its great you have an appointment coming up soon. I think you need clarity as to what's going on. Bisoprolol CAN keep AF at bay but I think usually that doesn't last. Please ask tour cardiologist about this - make up a list of questions. If you are waking up in the night I'd be surprised if that's the Bisoprolol but I could be wrong. Keep a log of when that happens, including your HR and BP. Do you have sleep apnoea perhaps? Just a thought. Get a list of things to ask when you go. They behave much better with lists I've found. Ask your GP to help you, or we can here.
Take heart(!). Things feel miserable now because you feel put of control. You need more information and you need to know what your options are. Use the next appointment for that.
Hi Singwell,I will also reply to your other post - Thankyou,
I’m pretty sure it is the bisop waking me up unfortunately. When I was taking 2.5 mg I was waking regularly every two hours, now I’m on about 1.6 mg, it’s every 3. I have vivid, bad dreams of doom and gloom every night 😞 never had it before the bisop. It’s a known, rare side effect apparently. My cardiologist had heard of it when I spoke to him last November about it. I used to sleep really well before Bisoprolol. I never had any problems at all.
Thanks for all your suggestion re the lists. I do try and do that as best I can. I actually had notes for when I went to see the EP this week, but he deflated me so much, I never read them in the end. I felt I was taking up too much of his time as he sighed when I wanted to show him print outs of my Afib attacks from the past.
Pretty sure I don’t have sleep apnoea - it is definitely the bisop 😞
Bisoprolol can be a horrible med . I am sure you are correct about the sleep problems. The waking up is probably due to the vivid dreaming. I havethe same problem. It is slightly better since I changed to Nebivolol but I suspect if one beta blocker causes a particular person these problems they all will. Perhaps your best bet would be to wean off very slowly and see how you feel at a much lower dose ie .65 mg. If this is not controlling your afib then you could ask to try Flecanaide as a PIP and use a betablocker alongside it to lower the heart rate till the Flec kicks in. As for the ablation could you not ask to be referred to another EP. The one you saw sounds awful.
When I see my consultant next month, I will ask about daily flec. I have tried three beta blockers, Bisoprolol, atenolol and propanolol though they were very brief and all had awful side effects for me, bisop wasn’t better or worse, but I went back on it after weaning off before, because I knew it worked….that was all. I thought perhaps the effects would wear off over time , but they seem to have just worse if anything. I think it’s also made my anxiety worse…and I get quite dark thoughts at times, never had those before either.
I’m really going to try and reduce - as slowly as I can next month and see how I get on as last time was awful.
My GP won’t refer me to any EPs or Cardiology unfortunately. When I was waiting for my cardiology appointment for January which never came I asked my GP if he would chase it for me and he refused. He said I wasn’t a priority and that people were dying and that the NHS was struggling. He said they’d get to me eventually. He certainly won’t refer me to an EP as he also is of the opinion I don’t need an ablation 😞
I can only see an EP privately if I wanted to see one again. The cardiologist I saw in November said he coukd refer me but it would take 6 months.
I wrongly thought that being paroxysmal and having difficulties with medication and my quality of life would enable me to be considered for an ablation. It seems they want me to wait for my condition to profess to become permanent and possibly unmanageable before they will even consider it 😳
That's terrible. Your GP sounds horrible too. Maybe you are the victim of a postcode lottery. As far as ablations are concerned I thought the point was to do them early to avoid paroxysmal afib from progressing. I think it might be worth giving Nebivolol a try . It's easy to break the 5mg pills into quarters. I even read that the lower dose pills are horrendously expensive so docs never prescribe them. Maybe that's why they don't have them available in the UK.
Lol - I think I might be the victim of something, I do sometimes think I’m just unlucky, I am actually thinking of changing my Doctors as I haven’t been happy with them for a while to be honest. It’s all totting up now, the issues I’m experiencing and to get an appointment is a battle, but I know it is for many.
I thought it was the point too with paroxysmal - it can’t be though, if I have to wait for it to get worse and unmanageable. Those were his words ‘come back and see me when you are worse’.
I will try nebivalol perhaps, if I need to go back onto a beta blocker after I come off bisop….I fear I may have to based on my experience last time.
If you do find an EP who will listen to you and if you are ever able to get an ablation in the future for your paroxysmal Afib, please do let me know and I’ll book an appointment to get a second opinion with them 😊
Hi Teresa, I feel for you and I hope you get it sorted. I got offered an ablation straight away after my cardioversion failed after a month. I didn't have any dealings with my doctor as I found him pretty useless!I got hold of my ep and Cardiologist secretary's and emailed them.
The whole reason I had an ablation is because it would have got worse eventually and I didn't want that. To be honest I wanted the cardioversion first cos I didn't like the sound of an ablation even though both my Cardiologist and Ep said to go straight ahead with an ablation!
Your GP sounds awful by the way what has happened to empathy and kindness? X
Hi, I think because I'd only had atrial flutter for less than 48 hours they could do a cardioversion I had an injection of a anticoagulant. I had flutter which I believe is a lot harder to control with meds.
For some a cardioversion can last longer but mine nsr lasted about a month and my flutter broke through x
I make my list with all my concerns and give it to the dr at the very beginning of appt. Seems to help. I also scan it before he leaves the room to make sure we didn’t miss anything. (Although I still have, of course! 🤣)
I did make a list for myself - I didn’t think if passing it to him …though I never really looked at it in the end due to the conversation that took place. I’d also printed out past afib episodes from my applewatch but he wasn’t that interested in looking at them and said he wasn’t used to seeing print outs from the watch. I only showed him two and I had about 8 printed off.
I was hoping it would back up my case as he’d see how high my HR went and also the frequency of what my last ones were like. By this time, I think my time was up with him.
I had vivid dream on Bisoprolol reduced from 2.5 to 1.25, also my HR went to low 50’s and can wake up. I’ve since developed T2 diabetes, long story. Lost weight because of it and since reduced Bisoprolol now getting low HR again and some dreams 🙄I get notifications of seminars by the AFA ant the last one was about ablation, I feel the message from the seminar for me was sooner you had an ablation the less damage to the heart the better. Less enlargement, I thought they were saying that the longer the heart was having episodes the less chance ablation would work and in fact those patients were not offered an ablation because of this.
I have been wondering about having an ablation sooner rather than later because of the potential long term damage.
Tips from my experience.It took a long time to get an appointment with the Arythmia Clinic and if I had not fought all the way I would have been fobbed off with medication & live with it.Slightly different as I had switched from Paroxysmal to persistent. What helped me the most was a call to the AF association & links I was given. I think CDreamer pointed me that way.I printed all the info & read many many times.It helped with medication choices and interactions.I then tried to make a list of questions to ask the NHS consultant.Something just popped into my mind when reading your post.Have you looked at your supplements.Some of these can cause interactions.Good luck anyway.
Really appreciate you coming back to me. Sorry to read you are persistent from paroxysmal. I’ve only been taking supplements for the past month or so and have really done my best to look into the interactions between them and my medications. I haven’t been able to take some that I wanted to take like CoQ10 as it interacts with carbemazepine for example. I am as careful as I can be and I have done my best to research what goes best with what and what time to take it. It is important, you are right.
I don’t bother telling my GP anymore what vitamins I’m planning to take, as they’ve let me down too much in the past with their interpretation of my blood test results which have always had some abnormalities recently. When I ask about the ones highlighted by the lab they just shrug off as not being important, yet when I research into these, they are important bio markers for Afib 😳 I’m losing a lot of faith in professionals to be honest.
Thanks for your other responses and 'good' to read others confirm your night time events. I agree you need to dig your heels in re ablation. The wait time for your appointment is pretty normal I'd say. I waited Dec 2019 to April 2020 for my first telephone appointment. I was told this was routine in my local hospital for the condition I had. Your Jan appointment will have been postponed because of the Omicron spike in the UK. The medics get redeployed to deal with emergency situations and less urgent appointments are delayed. I know that doesn't help you right now in your predicament but it does give you a context. I think the EP you saw sounds rude and dismissive. Dig your heels in. AF is running your life and you deserve better.
Thanks Singwell,Sounds like you’ve been through it a lot too. Was your Afib previously controlled by meds or did you have breakthroughs? Were you paroxysmal?
Never completely controlled no. Prior to ablation I had very symptomatic episodes every couple of months. I had one horrible BP hypo after one and passed out - that decided me I was going to have ablation. Because I was under sedation only they weren't happy with the job, hence ablation number 2 in 10 days time. Even so I'm much less symptomatic and a managing better so life is more enjoyable. I requested a 2nd procedure because they told me right away things hadn't gone to plan and thinking- if I can do this well on a procedure that didn't work.well, how much better could I be if they do it properly and finish the job. Not everyone benefits from ablation but from what I've seen here, it improves quality of life for most of us.
I can see you’ve been through it too…especially passing out. I do wish you all the best in 10 days time and I hope this one completes the job.
That’s all any of us want really isn’t it, quality of life. I don’t have any quality of life at the moment and can’t see a happy future being like this. I’m very down and not the person I was. It’s affecting not just me but my husband and son as well. I’m always miserable and I cry every day. I can’t see a way out and was hoping an ablation might help me progress and be the person I was as I’m finding it very hard. I know I’m ‘managed’ by the dreaded Bisoprolol, but it makes me feel like a breathless zombie most of the time, but looks like I will just have to try and either learn to live with Afib and and it’s unknown progression, or try and fix my Afib naturally as best I can without meds. I can but try 😳😊
After being diagnosed with viral related heart failure, 6 years ago, my doctor put me on a low dose of Metoprolol. That med gave me the worse anxiety, and suddenly my healthcare team attributed every adverse symptom I was having to my increasing anxiety. 2 months later, I had my 1st afib episode. Then, I was put on Eliquis and Lisinopril, had my beta blocker upped, and I had episodes of AF, every 3-6 months. I couldn’t sleep, had constant stomach issues, lost 14 pounds, I finally was switched from Lisinopril to Losartan and weaned off the beta blocker to a Calcium Channel Blocker. It was like night and day. My anxiety subsided, BP came down to the point my Losartan was decreased by half, I was sleeping soundly, and my PAF episodes decreased, substantially. Your doctor needs to take your concerns, seriously. My healthcare team treats me much differently, now.
Yes, it really irritates me now that anxiety is blamed for everything I have. I have an itchy rash on my neck at the moment and if I went to the Drs he would say it was anxiety, I just know it 😳
I am sorry you had such a hard time on metaprolol and what it did to you. I do wonder if sometimes the meds do more harm than good, which is another reason I want to try and stop them. I’m glad you are better on the calcium channel blocker,
I cannot remember the last time I slept soundly. It was over 8 months ago 😞 I think what annoyed me most was when I was telling the EP all the bad side effects that Bisoprolol has had for me over the past few months and the fact I was intending to stop it, he said to try and stop it if I wish and try and give it two weeks, if that fails take fleconaide twice daily with 1.25 mg Bisoprolol 🤷🏼♀️ It was like he had never taken on board the reasons I wanted to be off it. I never said anything at that point as I’d given up. I will tell my cardiologist that I have no intention of taking Bisoprolol again if I manage to get off it for a second time, after all that trouble, why would I go back on it again?
I saw a cardiologist (not EP) who got very huffy when I wouldn’t even try Bisoprolol because of my asthma but luckily my GP backed me up. I think he’s wrong about the good effect, I think it depends on how responsive you are. I take Diltiazem and it has definitely reduced the number and severity of episodes which is lucky because (long story) I can’t take anything else. I have a friend who swears her BP meds prevent her attacks although her GP doesn’t believe her, but mine is linked to high BP so GP has just prescribed a BP med as well to take while I’m going through a very stressful time. I’m not impressed by your EP, that sounds much more like the response from an old school cardiologist to me - I’d want a refund! Many doctors do take the attitude that you have to prove how bad the symptoms are by continuing to take meds with side effects that are equally bad - a sort of Japanese endurance game 🙄
Thankyou - I will mention both the nebivalol and metaprololol to my cardiologist when I see him in a couple of weeks, but to be honest, I am a bit weary of trying another beta blocker as I’ve tried three already and I just don’t like the side effects, which they all have. I’m sensitive it seems to tinnitus and from what I’ve read, they all cause that, some I know are lucky, but the atenolol I took made it far worse and I only tried it for 2 days 😳 funnily enough my gp did prescribe me nebivalol in November, when I needed to go back on a beta blocker, but at a dose not available in the UK at 1.25 mg. I rang round loads of chemists. In the end I had to back on bisop as I couldn’t get another appointment for him to change the prescription. It was the only time he has managed to prescribe me anything for Afib, as normally he hasn’t a clue, he’s very good, but not with that.
I’m glad you can take diltiazem….and it works for you as it sounds like you are the opposite of me as I can’t take anything apart from the flec and a beta blocker for this.
Lol at the Japanese endurance test! It does feel like that sometimes 😳 I haven’t had the bill yet, but am expecting it to be about £300 as they took a three minute ECG, which I noticed he never looked at. I just wish he’d listened to me a bit more rather than keep looking at his watch, which I could see he was doing. I was only with him for about 20 minutes and I know that someone arrived to see him at the same time as me so was waiting outside. I also wish he hadn’t attributed absolutely everything to anxiety….of course I’m anxious! At one point he tapped his head and said that I need to control it, as if I was going a bit mad. He said he thought I was depressed, but I know I’m not, not yet anyway….
All to easy to blame anxiety for everything, even the side effects or chest pains 😳
I take Nebivolol. It comes in 5mg tablets which are scored and meant to be broken into 4 toget the dose of 1.25mg. The EP needs a kick up the bum. It enrages me to hear about these doctors ( usually male ) who attribute their female patient's problems to anxiety. It is far too common.
I’d write to him and explain you dissatisfaction with his appointment and mention that as you ware so dissatisfied you only expect to pay say 2/3 of his bill, of course include the mechanical tests you had. Those you don’t say, don’t get. He should be given your feed back or he’ll continue with this attitude.I’ve been a Complementary Therapist for 25 years and won’t take rubbish.
I’ve read your posts with much interest as
I like to manage my PAF too, sadly had a really bad 2-3 years with ailments, last year diagnosed with T2 diabetes, very likely caused by viruses and maybe exacerbated by the vaccs 🤷🏼♀️ I as I’ve said watched AFA seminar about ablation and need to look into having one or not.
Thankyou so much for your reply. I haven’t had the bill yet, apparently they’re going to post it to me but Royal Mail has been awful round here for past 2-3 weeks and we’ve had zero letter post. I was dithering about what to do as one day I might need him, if you know what I mean! He is one of the lading EPs. But I did wonder if I’d get the chance to provide feedback. If nit, i was going to put it in an email back through his secretary about how I felt about the appointment.
The ECG only ran for about two minutes, if that at the appointment ….I wasn’t sure if that was right either - over £100 for that, I was quoted.
I am sorry to hear about your T2 diabetes and the vaccine, I do wonder if the vaccine has led to other illnesses people never had before, it does make you wonder.
I also wish you luck in getting an ablation with paroxysmal AF and hope you are luckier than me - if you do get offered one, please do let me know how you managed to do it and I’ll make an appointment with your EP instead! 😊
I thought so too, to be honest. I will see what the bill is and I might query it. I’ve never paid privately for a consultation before but thought it would be different. I had longer with my cardiologist last year when I saw him under the NHS. I was expecting more.
Hi Teresa, fully understand your rant. I have found private consultations usually do give that 'extra 10%' which doesn't sound alot but can be very important. They also help anxiety by not having to wait a long time for an appointment. If you don't get value push to get it or change consultants, I am afraid you have to get tough these days.
My maxim is the greatest wealth is your health. Despite not being well off, I have paid privately for an EP (no individual attention so ignored his advice to go straight to ablation), a very well known cardiologist (disappointing), a high profile Naturopath (good, he treats all his AF patients with a Mg compound and CoQ10) and every year the second (the first just didn't connect with me) cardiologist who dealt with me originally under the NHS. The repeated annual check-ups are reassuring for anxiety and you get updated on the latest treatments etc.
Maybe add to your list of Q's for your cardiologist whether you can take a low or medium dose of Flecainide without a BB or CB. ONLY do this with your cardiologist's consent as not common on this Forum and it can cause a serious problem. I was put on 200mgs Flecainide only and told any BB/CB 'would make me feel unwell', which has stopped all my episodes, now for 8 years and given me excellent QOL but no guarantees for the future; I should add I am now 68, no comorbidities, no other meds and lead an active lifestyle with low BP and HR.
Keep persevering and improving all the Lifestyle habits you can think of.
PS Try and get your GP on your side to get future ECGs or other tests done on the NHS prior to a private appointment, as they are all very expensive privately. A hybrid private/NHS can be done but again its not easy.
Thankyou for taking the time to reply. It’s really interesting to read what you’ve gone through and your quest to find answers and help. I think I must have just caught this EP on an off day perhaps. He is supposed to be the lead one in the hospital I went to which has a very good reputation in the UK for cardiac issues. They do transplants here too - I hoped for more. I didn’t get that extra 10% and I did expect him to listen. I just wish they didn’t just focus on anxiety all the time and blame that. I am anxious most definitely. He didn’t help.😞
I will definitely take on board what you say in all areas…There are a couple of other EPs there but they may have the same views, but I mustn’t be pessimistic.
Even though the NHS has been pretty slow and at times unhelpful too for me with my AF, the cardiologist I saw in November was better than the EP and he did listen. They all have their own views of course about how easy is it to have AFib and how quickly your body adjusts to changes in withdrawal of drugs. They all look at you as if you’re mad when you say you get side effects from them, as if they don’t believe a word you’re saying and it’s in your head 😳
The cardiologist did write on a letter that I could take flec 50 mg twice a day in the future without BBs back in Nov….no mention of bisop to be taken with it, funnily enough. I will ask about it again. I think the very low heart rate is stopping my Afib coming through. It can only be that. I never had a particularly high rate before, just what I would class as normal really, for me. I think it’s messed it all up now.
I’ve got an infection in an old back crown root canal that I’m having to get treated and redone in the next two weeks in two procedures and I think that its been causing inflammation 😳 my CRP had been coming up as 2 this past three months and I’m hoping it’s that. I can’t come off the bisop until that’s all sorted and I’m hoping with a combination of that, my magnesium being sorted and vitamin D levels, I might be onto improvements 🤞 I can only hope.
I will try as you suggest re: the ECG, especially as he didn’t even look at it, at this appointment.
Hi Teresa. I am very fortunate to have an excellent GP and Cardiologist. I was having the same problems as you with the Bisoprolol. My Cardiologist decided that the Bisoprolol was making my heart rate go too low at night, which was causing ectopics , which then set off the AF. He took me off the Bisoprolol and put me on to Flecainide two x 50 mg a day. It took three weeks to stabilise the AF ( and it did get worse before it got better) which he said was quite normal. I have now not had an episode for 9 months, whereas I was having them weekly , and sometimes daily previously. I now have to start on Apixopan next week , as I will be 65 ( which I am a bit nervous about) but luckily my cardiologist agreed that I can take a half dose as I only weigh 54 kg. I hope this helps you , you might like to discuss this with your cardiologist as it certainly worked for me. Good luck with your next consultation.
My heart rate goes to as low as 53 during the day, even on 1.6 and I’m not sure what it goes to when I’m asleep. I have an applewatch but I, too scared to use the sleep part of it as I know I will worry if I see it goes a lot lower.
Glad you are doing well in the Flecainide and I will ask again about that as the EP said I’ll need to take a beta blocker with it, it my cardiologist said I didn’t need to.
I hope you will be fine on the Apixaban…I have heard that a lot of people don’t feel any different taking it which is good.
Sorry you had such a bad time! I think they do often wait in the NHS now if they consider you are 'managing'. Is your other medication for anxiety? I'm guessing this might be why the EP is flashing the link between it and AF. Andthey do indeed feed each other. Bisoprolol is the first port of call in the UK for AF - its the best practice advice given country wide for paroxysmal AF - an EP told me that when I had a private appointment. You might find the Flecainide with low dose of Bisoprolol a better option- many use that here. But obviously that has to be medically approved.
I can't help wondering if you've just been fobbed off because despite you having paid for the appointment it'd be done on the NHS and their waiting lists are so long already.
Might it be worth asking your GP to refer you to another hospital? It is your right in England. Say you want a 2nd opinion. Otherwise, do what I did and pay to see one if the UKs leading EPs to get some better and more independent advice. I looked up the top 10 EPs on Google, or you can ask for recommendations here I think.
My other medication is for feinting episodes. I had experienced many falls and feinting since late teens and after many tests, they couldn’t formally diagnose epilepsy, but carbamazepine seems to have controlled them for past 24 years. It’s a very hard drug to change, especially after all these years and I take a very low dose. I’ve only had anxiety since I was diagnosed formally with Afib last Autumn unfortunately 😞
I may do as you suggest about other EPs…though I think the one I saw, might be one of the ones that comes up on Google as being one of the best in the country 😳
I think he linked my anxiety straight away because I may have made the mistake of sending through my latest letter from my cardiologist from November, where my cardiologist stated I was very anxious…pretty certain it must have been that. I think he immediately put me into a category before he even met me.
Once I get off this bisop….I really don’t ever want to take it ever again unfortunately. Hopefully they can give me something apart from a beta blocker or calcium channel blocker. This is my problem and one I was trying to explain to the EP, that as time goes on, I think my medication that I can take, if Afib progresses will be very limited, but I never really got that far as I was shut down by him 😳
Hi, I know that feeling - being told it's all mental! But it isn't, is it, although I'm a worrier just like you. I've decided to look at the situation as a new way of life, where the AF is a damn nuisance but not something that can be shrugged off. So I'm treating it as a sort of unwelcome pest which I will get past. As Jeannie says, a good rant can sometimes make you feel better and this is the place to do it as we all understand how you feel. I think the advice her is good - a second opinion is called for. I hope your appointment with your cardiologist is more use. Let us know how you go on? Best wishes.
I tell myself sometimes that I can handle it and I will try and look at it differently but it is hard. I think i worry a lot about the future and how it will affect me more than anything. I feel my life is just drifting by at the moment, I wish I could snap out of it.
This forum is good and I do feel better for a rant!
Hi.I think there are loads of us that are just left to get onwith it unfortunately. I went down the private route with 2 cardio and 1 ep.All very nice but really the only thing I got out of it was on a list to see if an ablation would work.Been on said list since last Aug.Im in persistant for over a year.I am more relaxed about it now but was very anxious for most of last year.I couldn't take any beta blockers even at the lowest dose as I struggled for breath just getting up to go to kitchen.Fortunately I am taking verapimil which is helping somewhat.Never once have I ever been offered a pip.Having said that the only cardio I have seen were the private ones.Cost £300 each visit.Got a cardio appointment next week .Phone call as they are not doing face to face.Would be nice for them to listen to my heart and check BP. My rant over lol.
I changed to Nebivolol from Bisophropol as l couldn't tolerate the side effects of Bis. I found the same as you that the surgery and the hospital couldn't get hold of 1.25 tablets. The hospital gave me 5mg and the surgery 2.5 mg. I was told to just break them up . They break easily as they are marked into halves and quarters. The side effects of Nebivolol compared to Bisophropol are minimal. I believe it works in a slightly different way to the other beta blockers. I always have the worst side effects from any drug but get along reasonably with Nebivolol. Good Luck.
I think I will try again and ask my GP to prescribe me the higher dose that is available in the U.K. 😊
I think they need to change their systems to represent dosages that are available in the UK. I had a terrible time ringing round trying to get it and it was a Friday afternoon and the GP had closed….😳
I may have to change the way I think about it too. It might be the only way I can get past this, otherwise I can’t see a way out for me and I’ll just get dragged down more.
It so good that you all understand - nobody understands unless they go though this themselves.
He had PAF for 9 years beginning at 50 years old. He worked out a dietary protocol that is not so difficult to maintain, which has left him free of ectopics and AF for the last 9 years without meds or an ablation. He maintains a vigorous exercise routine without troubles.
Since you have been refused an ablation, see if what he has worked out is worth a shot for yourself. It does seem effective for me but many more months need to pass before I will know for sure, but I absolutely feel at this point, that he is most certainly on to something, and not just for himself alone.
Thankyou. I’ve actually read about this chap and have kept a copy of his regime on my iPad 😊 I’m trying to follow some of what he does, but in the U.K. we struggle to get the amount of blood testing that he’s had to monitor his levels, I applaud him, he’s done a fabulous job and there is definitely something in it and he’s into something.
I believe too that we can fix this. I limit my calcium too and I believe that like he does, my vitamin D deficiency hasn’t helped. I’m one month now into my high dose supplement of it and already feel better… I am eating cranberries daily too 😊 no alcohol or caffeine…the only thing I don’t do is eat meat, as I’m a pescatarian, so I do eat fish.
I’m glad it’s effective for you do it obviously works. Please keep us updated 😊
I just wish we could get the amount of blood testing though to regularly monitor all the levels. That’s where it falls down for us 😞
Regarding Vit D levels. I assumed mine was low without testing, so I took 5000-10000 iu/day for 5 weeks before I got a blood test. It turned out that I overshot and ended up at 85 ng/mL rather than 64 ish. Makes sense since I did not feel great the prior 10 days to testing. So I didn't take any for the next 10 days and then took 5000 iu every other day for another month. That led to a level of 59. So it turns out that to maintain 64ish, I will have to take nearly the same dose as Steven Carr, so 5000 iu 5 days per week in the winter.
Also, something was still not right, so my girlfriend called my local water company. They said they add lime to the water to make it less acidic. Lime is made up of calcium compounds. So I bought a water filter to filter out the calcium among other impurities. This has made a noticeable difference. So make sure the water you're drinking, as well as anything else, doesn't have calcium added to it.
It is no coincidence that calcium channel blockers are prescribed to fight high blood pressure, heart pain or discomfort and irregular heart beat.
Just from a quick search regarding calcium and the heart:
"Calcium particles enter the heart muscle cells during each heartbeat and contribute to the electrical signal that coordinates the heart's function. Calcium particles also bind to machinery within the cell that helps the cell to squeeze together (“contract”), which makes the heart pump blood."
So to say that Steven Carr is on to something, is an understatement. Those of us with AF and ectopic problems most certainly need to pay close attention to calcium consumption, and I would say this remains true even after ablation.
Thankyou and it’s really interesting what you’ve discovered and how you’ve managed to higher up your Vitamin D levels. We have ours measured in nmo/L and when I had mine tested in January ( I had to ask for it specifically) it was 28 nmol/L, which I’ve just googled to see what it is in ng/ml and it’s 8.8 😳 my Doctor has told me to take 4000iu per day ( which is the NHS upper limit) which I’ve been taking since mid January, and I can’t get restested for 3 months as they won’t redo it before then. I was getting muscle twitching before I started to up it, which has got a lot better already.
I have loads more vitamin D3 in varying quantities as I knew I’d be low, even before I got the results, but you have to take additional vitamin D with a dr’s blessing here. I am tempted to take 5000 iu a day instead, but if I go very high in my results ( which I doubt) , he may think the 4000iu was too much if he thought I was taking that ….but I suppose it will be only me that knows and I don’t have to admit I took more 🤔 he also said a maintenance dose should be 1000 iu daily after ( depending how high I get) but I’m tempted to take 2000iu as I have a feeling I’m still going to quite low after 3 months, especially as my other drug carbemazepine depletes vitamin D. I did read on line here that some people have loading doses of really high amounts when they are deficient but I wasn’t offered that at all. I really want to get levels up as soon as possible and to have to wait another two months to find out if it’s done the trick,is very hard when you’ve got our condition. Especially if it doesn’t get my levels up high enough,
I asked my husband about our water….we have fluoride in it, but where we are in the UK he thinks there wouldn’t be calcium in it, though some other parts of the UK might have, as their water comes from areas where there is natural calcium around.
I do use a water filter, but will have to check if it filters out calcium.
It’s really helpful what you’ve found out - Thankyou so much 😊
Just be sure to keep calcium intake low while increasing serum Vit D, because as you probably know, Vit D helps to absorb calcium, so you actually don't need much and any excess calcium, with those of us who have these issues, can bring on ectopics or AF.
Thankyou again…and for the thread - I shall have to get my calculator out for it I think 😃 .yes, my level was pretty low and I have no idea how long it had been like that either as I think it’s the first time I’ve ever had my vitamin D levels tested in my whole life, It does make me wonder if it’s contributed to my Afib. I am going to up my daily dose to 5000ui at least now after reading that, until I get tested in two months. I figure it can’t cause too much of a problem with me being so low in the first place.
Please can I just ask you one more question? Do you take your dose in one go? I have 4000ui tabs that I take in the morning ( I think I read mornings were a good time to take it) or do you stagger your dose throughout the day?
I don’t have a lot of calcium, I eat quite a low dairy diet, but I am going to limit it a bit more, at least over next couple of months.
Yes, one 5000 iu soft tablet 5 days per week, so Monday thru Friday. I usually take it in the morning but I doubt it matters when.
Good idea to keep dairy/calcium to an absolute minimum while raising serum Vit D level and trialing the whole protocol for effectiveness. Carr says that ectopics should disappear in 3-7 days by minimizing calcium intake. That isn't too long to find out if his protocol would be effective for you.
Thanks for all your help Blulla1,You are very kind.
I’m not even sure if and when I get ectopics by the way….but it could be the bisop stopping them. I’m not really sure how I’d know. I have a Kardia 6 L ( only had it a week) sorry to keep asking questions but would I feel them? Is it like a flutter feeling? Would I see them on an ECG?
I feel my skipped beats, double or triple beats, etc. but some, such as yourself, do not. They should show up on a Kardia and and ECG.
I have a question for you. As we are the same age, when I was young, dentists used silver amalgam fillings to plug cavities, of which I had many which caused tremendous health issues for me my whole life, but I didn't get to the bottom of it all until I turned 60 and was able to neutralize the whole thing. Did you or do you currently have any of those silver amalgam dental fillings? I ask because such fillings are 50% mercury and over time, mercury slowly but surely gets into one's system, the organs, brain, nervous system, etc. and can create a myriad of problems and symptoms.
Thankyou, I thought that ectopics were that…I do sometimes feel them then, but not often, so it must be the bisop at the moment stopping them. I haven’t signed up to the Kardia care yet, but think I might need to as it will show me more Arythmias in the future. I am in NSR all the time at the moment.
Ah, yes, I had lots of black amalgams as a child and still have them. I did have 11 filled, but 5 have now either been replaced with crowns or white fillings, but I have 6 left. I have had a few dental issues this past couple of years especially and my dentist has said I should leave them alone as I have asked about them being replaced.
Do you think yours caused your Afib?
I have wondered about I must admit as I’ve also read the mercury can cause problems. Some do say it doesn’t, but there’s no smoke without fire, I know. I’m only hesitant because I’ve had a lot going on with my teeth over time and I don’t want to disturb them too much unless they need it 😳
Did having all your fillings taken out completely resolve your health issues?
Some of the fillings are quite deep 😳
I’ve just been scared of causing more problems to my teeth in getting the fillings replaced….
I don't know if they had anything to do with AF but coincidentally or not, my AF did not start until I began having overwhelming health troubles due to my old amalgams. I was hoping that by getting them removed and then chelating the mercury out of my system over the following 2 years, that it would clear up the AF, but it did not.
Yes, removing the amalgams safely, by a dentist trained in the safe removal of them, and then chelating the mercury out of my system did resolve everything except for the AF, some numb toes and tinnitus. Funny enough, but this low calcium protocol has made my toes feel better and the tinnitus doesn't bother me.
You wrote that you take carbemazepine which is used for neurological issues, such as seizures. Mercury can cause such things. connect.mayoclinic.org/disc...
It is a process to remove the fillings and then remove the mercury from one's system but it is totally doable if one wants to.
Hi Blulla1,Thankyou so much for taking the time to come back to me again.
This is certainly again food for thought - it has certainly made me think.
It’s a shame the Afib wasn’t cured for you when you had your dental work done. That would have been wonderful for you. When I’ve had some if my amalgams removed before, I don’t think any special precautions were made by the dentist. Some were removed due to ‘wear and tear’ and refilled and two I asked to specifically replaced with white, but they all were removed by normal drilling and sucked away by normal dentistry tools 😳 I’d best not think about it.😳
I am very interested in the seizure part too…I shall look at that with interest Blulla1.
You are most welcome and very kind to say so, but there is no need for thanks. Part of our duty as human beings is to help the next one.
Dental work alone will not cure most symptoms. It may cure some, but the mercury that has gone into the body over the years, never comes out unless it's chelated out in a safe way, i.e. slowly. IV(intravenous) treatments are dangerous. They can sometimes bring quick relief but that is often short-lived with heavier problems later on.
Holistic dentists have special low-speed drills to remove mercury amalgams. They often just chunk them out in literally a few seconds, and even so, they have vacuums placed in front of the mouth to suck away mercury vapors as well as other precautions. youtube.com/watch?v=SKQJxSr...
Drilling away, i.e. slowly grinding away at them releases extremely toxic mercury vapors. Consider yourself lucky.
Heavy metals cause seizures. Mercury can cause seizures but silver is the worst. Dental amalgams are roughly 50% mercury and 30% silver. Because heavy metals can cause seizures, those prone to seizures would reasonably be expected to be more sensitive than normal to heavy metal problems. Through a variety of mechanisms toxicity worsens brain electrical activity regulation.
Amalgam removal and chelation can help in the long term with seizures/epilepsy control, but during the process, one needs to stay on meds.
Also, staying away from hydrogenated fats is important.
Thankyou ( honestly) I never realised the extent of what the amalgam fillings can do. I will definitely look into this. You’ve certainly given me a lot to think about and investigate.
Thankyou for the link/video too. You have been very thoughtful and I appreciate it.
I have stayed away from hydrogenated fats many years ago fortunately - that is definitely something I always avoid 🙂
I wish you all the very best in your journey to beat this as well.
I just checked our water company on line and read what they have in their water and there is calcium. I do use a water filter which is supposed to remove it, I did check. This may be useful for others though to check their water companies info too.
Teresa, I'm sure you're not seeking sympathy and what you need is treatment. Seems afib is treated differently here in the US. By the time I had had 3 episodes of PAF, that no longer responded to medication and could only be reversed with cardioversion, I was not a happy camper. On 3rd hospital admission, EP came to meet with me to suggest an ablation. I think this was a Tues or Wed, I agreed to procedure, and the ablation was done on Saturday. It's more than frustrating to not be treated, it's not good for the patient to be SOB and feeling poorly all the time and fib stresses the heart.
I had a few episodes after the ablation and EP said it's not uncommon in the first year after ablation. Things have calmed down a lot for me, and I'm grateful. Hope you get the treatment you need soon.
We certainly treat it very differently in the UK. It’s not taken as seriously as in the US. You have been so lucky. I a, pleased you have had it treated successfully.
You are not alone. It's truly disgusting how some of these Drs treat us patients. I've known veterinarians who treat animals better. I'm in the USA and some of us get the same treatment you have. They seem to think it's one size fits all. Throw the same meds at the patient and send you out the door. What I believe is so important that Drs don't do (either because they are ignorant of it, lazy, or some of our health insurance companies won't pay for it) is to do an in depth check of our nutrients. It's important that nutrients are in balance for the heart to function. And the Drs don't consider the vagus nerve. Too many Drs are robots nowadays. Pawns of our insurance companies here. No empathy or sympathy. And if you're a woman you're really not going to get either. Please take care. Hoping you will find a solution. This forum is a life line for so many.
Yes. The first cardio Dr I had I asked him about the vagus nerve and he said- "We don't deal with that". I think my eyes must have glazed over. Lol. It's amazing that most Drs don't give the vagus nerve one thought. It should be a major thought. Geez. You take care and be safe.
After two bouts of Afib (both needing DCCV) I was referred for ablation. While waiting I was hospitalised for another week and eventually seen urgently. However I did total up thirty days in hospital over those three episodes so perhaps that got me the ablation.
I am so sorry to hear that. I think you’re probably right though, you got the ablation as you’d been in hospital a long time. It must have been awful for you.
Oh bless you. I didn't write it for sympathy though, I justed wanted to tell you what happened. It's such a crap condition to have and I particularly hate the way the EP just says "oh palpations" as if it is nothing while the heart is banging along at 180+ !!!!I hope you get sorted out soon xx
Jaja, have you talked to doc about why you don't think ablation worked? It's not uncommon to still have some arrythmias in the first year, but after that, things should improve. Do talk to your doc about it. You may be getting a different arrhythmia, so don't leave it up to chance.
I have a brother who has been taking carbamazepine since childhood for epilepsy, and now, among other drugs for heart issues, successfully takes Reaptan 10/10 (contains 10 mg perindopril arginine, and 10 mg amlodipine), the latter being a calcium channel blocker, as I understand. I realise your experience is different, but I just wanted to record that perhaps not ALL calcium channel blockers are incompatible with carbamazepine, as you wrote. I hope this is helpful in this small area of concern to you.
Thankyou for coming back. That’s really interesting to hear about the amlodepine. I look up all the interactions on the NICE guidelines on line which I think the GPs refer to and they have flagged it amber as moderate interaction, saying that it needs to be carefully monitored for a dose adjustment as carbemazepine can affect the amlodepine. I feel better knowing that’s a possibility. I think that calcium channel blockers affect the liver, which carbemazepine also affects and that might be the connection ( don’t know the ins and outs) so perhaps I’d be ok on that one.
It is definitely one to consider for the future.
Though to be honest I worry about both beta blockers and calcium channel blockers as I haven’t got high blood pressure - I was always low side of normal. I think neither are great for me, but at least I know all is not lost and they hopefully won’t run out of ideas for me when I get too bad with it!
Oh, how disappointing to have gone private to see that EP and then feeling like he wasn’t listening! I’d be really frustrated too. I’ve had 2 EPs that were like that. And finally found a 3rd who listens. Even though he’s occasionally said “never heard that reaction to that med before”, he still doesn’t dismiss me. So many meds, so many interactions w other meds, so complicated & confusing. Any hope of seeing another EP? Wishing you luck.
Thankyou. It’s not really an option to try and see another at the moment, especially due to the cost. He is at the local hospital near me ( and it’s regarded as one of the best in the UK for cardiology) and he’s a leading EP. He works for both the NHS and privately.
Unfortunately in the UK, it appears they only consider ablations for Afib when it’s unmanageable by medication. I wrongly thought that I would be considered while it paroxysmal, or if the side effects of medication were intolerable, or if medication was limited for me due to other medical reasons.
Seems like I will have to wait for it to worsen and become unmanageable and keep my fingers crossed it doesn’t 😳
I'm sorry that your private EP consultation has not provided the answers you were looking for. Also, I take on board your earlier reply to me regarding your negative view of daily dosing of Flecainide and Propranolol, which I understand have worked well for you as a PIP.
Obviously I'm not in a position to offer you medical advice. However, taking a daily dose of 100mg Flec and 40mg Propranolol worked well for me over a 30 year period AFAIK without any serious side effects! Mostly it prevented AF events throughout 25 years, though latterly I began taking additional Flecainide PIP up to the maximum 300mg daily limit. This was probably due to a combination of my AF worsening and Flecainide efficacy dropping off. When I reached 2 or 3 AF breakthroughs per week (with Kardia printouts), the EP offered me a cryoablation which was done in August 2018.
I'm sure this forum will help you reach the best decision for your own circumstances. We are all different and I send my best wishes, whatever path you take to reduce the effects of AF.
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