Well I'm right back in it. Feel really poorly TBH. Never have I felt as bad as this with afib.
Still after being in sinus for a few years it's be to expected I guess. It will pass as my body adjusts to my new heart rate. 80 bpm one minute and 57 the next. The Bisoprolol knocks you for six but I know my body will adjust in a few weeks (fingers crossed).
Boy do I feel ill though. Still there are people much worse than I so I'll have to 'man up' and get on with it.
I'll copy and paste my update from the last thread below - I just don't feel up to spending to long online. I know we can't give medical advice but it's my take. Any thoughts would be most welcome. Anyway need to rest for now.
Oh well it had to happen I guess. Went to A&E and they packed me off to a ward (big thumbs up to the staff who were all fantastic).
It's flutter. Taken off flec and put on one dose of Bisoprolol a day (5mg). I can understand why people on the forum say it makes you feel rough - still early days so need to allow time for body to adjust.
I don't get it at all though. The consultant said there's no need for me to go back on anticoagulants - wot ??? Of course there is and I did insist with my heart acting up like this. They took me off flec as they said this 'could' be the cause. Personally I would like to stay on it / take a beta blocker and anticoagulant. As I see it flec has worked wonders for 2 years and now I'm at risk of full blown afib again (which is coming and going on their monitors).
After being in sinus for so long I feel rough - I know it will pass though.
Now the other thing is he suggested is an ablation for the flutter. He say's the success rate for flutter is about 95 % but I know it won't stop afib returning. What's the point ?
My ideal would be another CV - return to flec (edit - stay on flec) and a smaller dose of beta blockers to see if I can pull another year out of the hat.
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I’m sorry to here your AFIB is making you feel so unwell. I was in hospital with mine agin yesterday but came home in the evening. Mine is Constant now. Mine makes just so tired. I feel your pain xxx🙂
Thanks Buddy. Sorry to hear you were in hospital again but pleased you are back home. Please note if you are in permanent afib you should find your body adjusts and you won't feel the effects so much in a month or so.
I think we may both be in the same boat with this one. Good luck sweetheart and I hope you feel better soon.
I can normally cope and stay at home but I was struggling more with my breathing and chest discomfort. Although some of it was down to my dam Anxiety. I’m doing better today having a day in bed
How miserable for you Paul, but I do admire your spirit - so essential with this damned condition. Flecainide can instigate AFlutter, no doubt - I used to have short runs of it but Nebivolol seems to have stopped it (??hope??).
My cardiologist said exactly the same about ablation for flutter - much easier than for AF and with a high success rate, usually in the 90%'s. My thinking was that if flutter became a problem I could have the circuit ablated and continue with my Flec. Never got to ask this question as the flutter runs stopped.
I don't know your age or CHADS score but Flutter carries the same stroke risk as AF.
Hang in there - this too shall pass - wishing you well and better times ahead.
So sorry Paul you are feeling so poorly. I experienced the same as you a while ago. Flecainide had caused me to go into atrial flutter as well. Had my ablation for it back in December, seems to have done the trick. I have only had two very short lived episodes of AF since, sorted out by my Flec taken as a PIP.Fingers crossed though that the Bisoprolol will do its job, and you will start to feel the benefits soon. It is hard though this darn condition is real b…………….
I’m thinking of you and sending you a big virtual hug 🫂 , take care and I know it’s easier said than done but try and rest, and it will all settle down soon.
Sorry to hear you're feeling so rough Paul. I wonder if your GP could refer you to the department that does cardioversions?
You may find (and hopefully this does happen) that you suddenly find yourself back in normal sinus rhythm. How are you finding walking around the house? Are you feeling ill and breathless? I once reverted, after weeks of being in AF, by having an alcoholic drink and at the same time eating lots of Doritos, the ones in the blue bag. Salt intake has been said to help people on this forum in the past .
Take it easy my friend, hope you soon feel better. I'm here if you want to moan, or need some sympathy. AF is a hateful condition.
Thanks Jean. Just feel really ill - you are quite right though that I could go back in to sinus. Lovely thought and fingers crossed.
A call to the GP to be refered to the cardioversion department could be an idea. At the moment they are refering me back to the cardio and asking him to refer me to an EP. It will take months and months I think.
Still worried about losing my safety net of flec though !
Turning off for the day now and going for a kip. Have a lovely weekend and take care. I know where to come for a moan now
You have a great outlook on the situation, much better than I when I'm in a-fib -- which I was this evening. Your body will adjust to the new meds. I was on Bisoprolol in the past and my body got used to it. Good luck Paul!
I hope your afib has passed now Snow. I know it can take a weeks for your body to adjust to a new med - the Bisoprolol is knocking me about a little at the moment though. Still on a positive note it's keeping my HR down
Yes, my episode last night lasted just under 3 hours -- fifth one since my ablation a month ago. If you still find bisoprolol not to your liking, there are lots of other medications that serve the same purpose. I was on Verapamil that turned me into a walking zombie at work years ago. I definitely got a change from that one!
Hi snowgirl, I’m just browsing and dropped in to comment. I had an ablation 6 weeks ago, and I’m interested to see that you have had af since yours. I know we’re not supposed to worry if that happens, but it’s still a bit disappointing isn’t it? I have had several episodes, but not all afib. One was a 20 minute run of ectopics, not my usual thing. Another episode was 3 hours irregular afib followed by 5 hours of tachycardia (130 bpm), which had me ringing 111 and ending up in a and e. Have you had anything like that? How do you feel about things this far down the line?
I also just wanted to say I feel for everyone here, empathize with your discomfort and anxiety. I’ve been there for 20 years! Finally got the ablation and feel absolutely sure it was the right thing to do. X
Hi jan-ran -- It was quite disconcerting that two weeks after the ablation and feeling on top of the world, the episodes returned. As mentioned, 5 since the ablation a month ago. I contacted my doctor whose nurse said it's completely normal during the three-month "blanking period." I had a cryo ablation in 2019 which produced horrible a-fib episodes two months after, worse than even before the procedure, but those suddenly stopped like a light switch turning off. I don't have the symptoms you have with tachycardia, but do have ectopics -- which I call normal palpitations. Yes, it certainly produces anxiety, doesn't it! Regarding how I feel this far down the line, I think my experience is normal. I feel I overdid it in the garden a number of times which I think brought on those recent episodes. I love playing in the dirt! Good luck to you and thanks for replying.
Cost me 175.00 follow up 100 saw him in four days !!!!Sorry just seen all this . Had phone and router trouble and at fracture clinic so kinda trying to catch up 😘
Hi Paul sorry to hear you are feeling so rough and hope you are soon feeling much better. If you are going to be referred to an EP then suggest you arrange to be referred to see one privately. It will be much quicker and if you need treatment (eg Cardioversion) then he/she can refer you back to the NHS for that. I recently had a cardioversion (privately) preceded by 2 weeks of flecainide (2 x 50mg daily) and it worked first time thanks to the flecainide. An EP will advise you if this is appropriate for you at the present time. Best Wishes Steve.
Paul, thanks for updating us and very sorry to hear things are currently rough. I know how easy it is to feel despondent about AF, especially if we thought we were managing it and then something untoward happens. If you have the brainspace...here's a few thoughts. How long have you been on Flecainide, and was it as PiP? I seem to remember that it was. If you weren't on anything else aside from anticoagulants then - according to my understanding - that's your problem. Flecainide must be taken with an AV node blocker (rate controller) because of the likelihood of it causing flutter. I had this spelled out for me when I went for my ablation recently. I'd love to get off the Diltiazem I'm on + regular Flecainide but they were adamant that I shouldn't change for that reason. You'll remember that many members here are on Flecainide and bisoprolol or another beta blocker. Bisoprolol is the standard rate controller that is first handed out by hospitals - remember that A and E are there mostly to keep us alive and do repair jobs - and that most cardiologists are plumbers - they don't understand the niceties of electrical problems. They've given you a chemical kosh to keep you safe - a good EP will be able to do more than that for you. I'd be paying privately to see a good EP in your situation, which is what I did just over a year ago. As for ablation - if the success rate is that high - do it. Sending you strength and hope PaulB as you so often do for others. Hang in, don't be disappointed in yourself, there will be a better QOL solution.
Good advice Sing. I was not on a beta blocker - just the flex 100 mg twice a day and 100 mg as a PIP. There could lie the problem ! Thanks for your kind words and maybe you are right about the ablation although I'm still thinking flec / blocker / anticoagulants at the moment
You said "They took me off flec as they said this 'could' be the cause. Personally I would like to stay on it / take a beta blocker and anticoagulant." COULD BE are the magic words here Paul. They don't know - A and E tried that with me in December and I dug my heels in. I knew they didn't really know what they were doing, even though I understood they were doing their best to keep me safe. However, I was back in NSR by then. I was also already on the Diltiazem. The prescribing of antiarrhythmics and rate controllers is a fine art - one that is not well understood by cardiologists unless there's a good EP on board.
Your instinct may be right Paul. Take a breath, dig your heels in and be your own best advocate by seeking the advice you need. Got everything crossed for you - there will be a solution.
"The prescribing of antiarrhythmics and rate controllers is a fine art - one that is not well understood by cardiologists unless there's a good EP on board"
Don't give up is all. Just because you're in a bad spot now doesn't mean you'll be there for always. Feel free to remind me in future posts where I'm down. 😉
In my experience Flec makes flutter worst and I believe flutter is worst for your heart, thankfully it is the easiest to ablate with the best results. The CV will get you back to normal but in my opinion Flec will not be my choice of drug thereafter. That said I am no cardiologist and they generally know better - I do know of one cardiologist who will not prescribe Flec due to it potential to make things worst (thats one out of 3 though).
Hi Paul, I agree with everything Singwell said - just to add my experience, I was on Propafenone (same class as flecainide) alone, one day went into AF+flutter, thought I was having a heart attack with chest pain and feeling so ill. After a few days in hospital and an angiogram Diltiazem was added plus Rivaroxaban (my GP had advocated aspirin up until then 🙄). All OK for a while until I had some scary pauses, so ablation for AF and flutter and all heart meds stopped. I have recently been told that it is too dangerous for me to take Flecainide unless I have a pacemaker, so clearly a very effective drug to be used with great caution.
My thoughts would be grab the ablation, because so many people have said it makes them feel worse than AF and is resistant to control with drugs. If you can’t cope with Bisoprolol there are other beta blockers or diltiazem may be an option.
My weeklong episode of AF was terminated by a blazing hot curry but probably only works if you are very sensitive to chilli as I am!
Oh my lord - not sure I'll try that one 😃. But I agree Flecainide has to be used with caution and personally I've had some horrid reversion pauses on it when I took 150 mg to stop an episode. I've vowed I won't do that anymore.y BMI is quite low and I don't think my body likes it.
It was horrible - supposed to be ‘mild’ but took my breath away eating it (restaurant chosen by my daughter for birthday so I had to be brave!) and describing the after effects would be TMI. My cardiologist thought it was hilarious when I told him it was an alternative CV 😂
Not medically trained, but I developed reentrant atrial flutter 9 days after my succesful AFIB PVI cryoablation. My EP believed the Flec caused it as I had no flutter previously. I agree as I was asymptomatic in high rate AFIB and I could run with it no problem. With flutter I was breathless walking to the kitchen for brew! My flutter was rate controlled by diltiazem 200mg at 140bpm resting
I had an RF ablation for the flutter 4 weeks after my AFIB ablation and the flutter was gone. I was advised the 90% success rate but told if it was a success it was very unlikely to return later.
Mine was a success and the flutter was gone, instantly and I could breathe again.
3years 3 months ago.
I was kept on flec until 3 months after the ablation.
I think that my EP felt it was better to protect the AFIB ablation rather than reduce my flutter symptoms as the flutter ablation in the right atria is easier normally and has a higher success rate in the right atria.
I was fine so long as I did not move! so I bought & read a lot of books and bought a lot of new music during that time.However 4 weeks lying down does nothing good for your muscles ..it took me few weeks after to build back up muscles afterwards.
"Do not stick with it just because it [used] to work"
Fair point John and taken on board. I'm still uncertain though - the doctors don't know and say it 'could' be the flec causing the flutter. It might not be too. Rock and a hard place
Ahhh hope this passes quickly for you doesn’t last too long.I asked for another cv and was told no pointless , I’m on blockers , water tablets, bp tablets and heart still all over place but if I don’t take them it’s ten times worse .
One thing that helps a lot is swimming I’ll go in with bad puffy feet ankles amazingly come out feeling better and puffy feet are gone and I feel way better for good few hours it’s my way of trying to beat the horribleness of a fib. Yes I feel knackered but I go so slow lol I think I annoy the older swimmers trying to overtake me 😁
Swimming is certainly good exercise Jane. I'm not sure to much exercise is a good idea with HR all over the place but I may just start gentle walks everyday. Cheers anyway.
Definitely sometimes it’s just a walk round block seems to help for me when I’m feeling really up against it let’s hope weather gets better so you can do that 🤞
Sure Jane - I too hope we get some decent weather this summer. Looks like overseas travel will be a no no for me again this year. Oh well - such is life
Hope you start feeling better soon Paul. If you can't tolerate the Bisoprolol at 5mg you could see about changing to Nebivolol. It gets good reports from people here who have switched. I certainly find it an improvement on Bisoproplol .
Make sure you ring your GP in the morning Paul and tell him how you nearly passed out. Sounds like you may be better on a lower dose of Bisoprolol. I know quite a few people here only take 2.5mg.
However I spoke with the doc yesterday and told him what my gut feeling is. I'm still going with flec / beta blocker / anticoagulants and CV. He said he will contact my cardio and see if I can just be refered.
It's still my take Jean - see if I can pull another year or so out of the hat. The ablation route (for me) is to hit and miss (I don't want that comment to put others off - it's just my personal view).
I think the worse bit is the anxiety I feel at the moment - I'm right on edge but know it will pass I always feel like this after an afib attack and it takes a week or so to get over it.
I can't believe it I've just deleted all I'd written to you, think I may be losing the plot as I've already done the same thing once already today.
After a PAF attack I would feel drained for days afterwards so I know how you feel. Paul, don't be afraid of going into constant AF, I find it so much easier being that way and can lead a fairly normal life. My pulse hovers between 60 and a 100, as far as I know cos I never check it these days. Now you've made me think about it, I've gone and got my BP machine. Pulse at the moment flitting between 76 and 86, BP really good. Odd that as soon as I started checking it, my pulse gradually went up. Honestly the power of the mind must never be ignored. I guess my pulse would have been lower if I hadn't walked to another room to get the machine. I've also been eating - not good times to record a pulse.
I'm well and now we need to get you that way too. Hope you are successful in getting a cardioversion, yes I also feel that's the way to go. Glad you're taking the Flec and beta blocker too. I still take them, but at a low dose.
Take care and keep us updated with how you get on.
"Honestly the power of the mind must never be ignored. I guess my pulse would have been lower if I hadn't walked to another room to get the machine"
For sure - I alway panic with the first reading = HR up. The second (when I know it's not to high) is always lower. Always sit for a few minutes as well before doing the reading - even walking to another room up's your rate a little.
"Hope you are successful in getting a cardioversion, yes I also feel that's the way to go"
I’m so sorry to hear that Paul. I can’t give any advice because I, fortunately, don’t get it too often, but don’t like to think of people feeling so ill with it. Sending you a hug and hoping it won’t be long before you feel better. 🫂
Hi Paul, it will pass....I came off flec as after a few months being ok it put me into pro-arrythmia. I came off bisoprolol too. Now on Sotalol and apixaban and although I still get 'flutters' not sure full afib, I am much better. Can't understand why they have taken you off anticoagulants though 🤔
Sorry your feeling so rough Paul. Flec stopped working for me too last December I was in AF / Tachy 140 bpm when not at rest. Was given a CV and put on Dronedarone 400mg x 2 a day, plus Diltiazem 90mg x 2 a day. Still in sinus at the moment although I don’t want to shout too loud. Trouble is my liver and kidney function is now showing abnormal and if it doesn’t correct I will have to come off the Dronedarone and I know what that means. Us AF ers have a lot to contend with don’t we. When I was in persistent AF before my first ablation I did get used to it after a while when the rate was controlled and had to feel my pulse to check if I was still in AF. I hope you feel better soon and they get you sorted sooner rather than later.
I’m so sorry to hear this, Paul 😕 That sounds so rotten. You're always so supportive and helpful to us all. Hope you know we’re all wishing you well, and willing you back to health any way we know how x
Hi Paul, sounds like you've been through it lately, and still. Wishing you well on finding a good solution for you - the right EP would certainly be a good start. I noticed somewhere in the thread that you mentioned your BMI being low, personal question - are you underweight? If so, the wrong dosage of any drugs for your weight could be causing your problems and it is something that can be overlooked when clinicians are prescribing. Just a thought 🤔All the very best Paul and I love your positive attitude, if not a bit jealous of it too!
Would like to think that they definitely marry the two Paul, but I have known people to have been given too high a dose of heart meds for their weight. I guess it's always worth a mention/check...
Spoke to doc yesterday and he reduced the beta blocker dose to 2.5mg. I told him my 'gut feeling' about another CV etc and he said he'll contact the cardio asap and see if he'll just refer me. So that's good news but I'm right on edge at the moment - as I say to others though the feeling will pass.
I hope all is good with you Will - you take care too
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Doesn't feel like it right now but you are quite right.
x
Update
Update 
RF ablation today. Update!
