I’ve undergone two cardioversions, and each time, about 10-11 weeks later, I’ve reverted back into atrial fibrillation (AF), despite initially being in normal sinus rhythm post-procedure. Following the first cardioversion, I remained in normal rhythm for 12 weeks before slipping back into AF, which persisted until the second Cv.
I’m wondering if there’s anything I can do to get back into a normal rhythm. Currently, I’m on a regimen of 100 mg of flecainide, also rivaroxaban, and bisoprolol. I’ve heard about the “pill in the pocket” approach for flecainide, but I’ve also read about its potential dangers.
Any advice or suggestions would be greatly appreciated. One thing that surprised me reading these posts was that people seem to go in and out of AF sometimes only for an hour or and then back into normal pulse. That never happens to me. I never pop back to normal rhythm without cv
Thanks m
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Can you tell something about your lifestyle? Like what type of diet, any alcohol, smoking, stress, excersise etc. I ask because whenever I think about what me as a af patient can do and control is lifestyle choices which greatly (of course not for everbody) impact the af burden.
I've been diligent about maintaining a healthy lifestyle. Ive lost weight , I've abstained from smoking and drinking alcohol, and I've cut out coffee completely. Occasionally, I indulge in a couple of cans of Pepsi Max, but I'm careful not to consume any other sources of caffeine. Additionally, I make sure to limit stress as much as possible. After cardio version back in af all the time and energy difference is about twenty percent or 15% less - calculated by looking at a 5K walking time on a treadmill when I’m in AF, and when I’m not in there, there’s a top of about 15 maybe 20% longer. Tired a lot. The waiting time for another cardio version will be months so for the next several months I’ll be working at a much lower energy level.
You haven't told us much. Are you a man or a woman? Roughly what age are you? Are you employed, out of work, or retired? What is your diet meat eater, pescatarian, vegetarian or vegan? Is your AF symptomatic or asymptomatic? What form does it take, e.g thumping in the chest or bag of worms? Do you eat large meals? Do you have other ailments? Are you on any other medication for any other ailments? Do you live in the UK or another country.While most of us have no medical qualifications and therefore cannot advise you on what medication you should take, 100mg of Flecainide is a fairly low dose, but you must not raise it without discussing it with a medical professional, preferably a cardiologist and / or an electrophysiologist.
Because I'm asthmatic I wasn't proscribed a beta blocker, and my Flecainide dose was 300mg a day, which stopped all AF for 10 years. Then I was found to be in persistent, though asymptomatic AF.
What an excellent post, Thomas. Asking health questions when no background information has been given means any answer or advice will always be less useful. Given the anonymity inherent in registering on this site, such details aren't "personal", either.
It might be worth stopping the Pepsi max - it’s not the caffeine as such, but the artificial sweeteners that can trigger afib for some people and many of us tend to avoid artificial sweeteners if we can. Pepsi Max actually has the worst culprit - aspartame.
Its not the caffeine or non caffeine that is a problem, Pepsi max, even caffeine free does contain aspartame, which can be a trigger for afib. If you google it, you’ll also see aspartame and other artificial sweeteners are possible known triggers for afib.
Thanks for that you might be right, but this is the only thing I have not been able to give up caffeine free Pepsi Max is my only joy in life lol as I gave up caffeine . I’ve stopped drinking coffee which I drank for four years. I’ve given up a lot of the foods that I used to eat, I exercise I don’t smoke I never ever drink alcohol. I drink a lot of caffeine free pop. I think it’s difficult to work out what triggers atrial fibrillation. I’ve been doing a lot of research recently things like sleeping. For example last week I slept very badly extreme pains in my back maybe that caused it. I suffered some stress at work last week, maybe that caused it it’s difficult to pin down
I still drink caffeine ( only one though) but if you think it’s a trigger, then maybe it’s not a good idea to have it.
I don’t think there is a proven link that caffeine is always a trigger for afib, but there is a risk with artificial sweeteners unfortunately. We definitely all need to find some joy in life and if you are certain that all the pop isn’t making it worse, then that’s fine. I avoid it. I do like a small amount of dark chocolate though, that’s my little treat 😊
Stress is definitely something we should all try and avoid if we can, but it’s easier said than done with afib.
We can pull our hair out trying to work out what causes it….but I really would consider cutting down on the sweetened fizzy drinks, if you drink a lot of it.
I know that caffeine is constantly discussed as something one should give up when suffering from AFib but every clinician I've seen who talks about evidence has said that there's zero evidence that caffeine impacts AFib. Unlike alcohol which definitely increases occurrence of AFib.
The studies coming out recently actually show that regular caffeine intake has a protective effect in CVD and heart attacks which may reduce death.
My personal experience is that a good quality, well made cup of coffee has no affect on my AF but a take a cup of dehydrated UP coffee and I’m done for!
the doctors who I spoke to today. I think caffeine is very bad but I see your point of view and thanks for your comment. I can’t determine what triggers my ear
If I was you I would ask my cardiologist if I could up my Flecainide to 200mgs/day (a medium dose). I would also take a Magnesium compound and CoQ10 as well as doubling down on other Lifestyle better choices.
I did exactly that and went from 2 AF episodes a week to 2 in 10 years.
It appears that your AF is now persistent, something I dread. Sone (like me) have paroxysmal AF where you self convert after a period of time. This is the early stages of the disease, albeit I have been like this for 4 years. My episodes are awfully debilitating, often lasting 36 hours. To that end I chose an ablation hoping it gives me relief.
Persistent AF is not always so terrible Karendeena. in fact when I read about the nightmares that many people with paroxysmal AF go through I’m actually grateful that my AF is persistent ( although touchwood currently non-existent!). Persistent AF is often invisible or of a very low level and can be controlled well with medication. Persistent doesn’t mean persistently experiencing the worst!
I get this. Yes, paroxysmal afib can be a nightmare that's why I chose ablation. My episodes go on for 36 hours when I get them and are debilitating. On the other hand my mum has permanent afib and doesn't feel it at all
Like you, my AF was of a persistent nature, and seemed to slip into the persistent form very soon after diagnosis. Like you I had a couple of cardioversions which did not keep me in NSR for more than a week. However I was assured by my EP and by this forum that even a few days of NSR after cardioversion is good grounds for optimism. As Bob has frequently pointed out on this forum, cardioversion is used as a way to diagnose suitability for an ablation. The fact that you stayed in NSR at all indicates that you could be offered an ablation, assuming your heart is generally sound apart from the arrhythmia. That’s the route that I and many others on this forum have taken.
I was offered ablation in part because I was quite symptomatic and uncomfortable with the experience of breathlessness on the stairs etc and awareness of dicky heartbeat. For many people AF is “invisible” and as it doesn’t kill you it can be controlled with medication. Also not everyone wants to go down the route of invasive procedures. Because I had open heart surgery as a teenager ablation is small fry! To a great extent the choice is up to you. I have no regrets and even if my AF was to return in the next year or two I have been told I’ll be offered another ablation.
I also found paying for a private consultation with an EP very useful to get all my questions answered.
my cardiologist said that my heart scans were normal. No structural problems as such. I’ve researched this atrial fibrillation and the triggers could be as varied as sleeping badly, genetic drinking caffeine, feeling stressed this so many variables. I think I might’ve had intubation for a long time before I noticed it, that’s what the doctor said, and I just felt tired and out of breath a lot. it was only when I got the cardio version that I suddenly realised that I’ve got so much more energy now and so I’ve been working at in a much higher gear if that makes sense
Thanks for your helpful responses. I’m going to contact my doctor. Just to summarize, I'm a man in my 50s, uk and when I experience atrial fibrillation (AF), it's not as severe as others have described. I lose about 20% of energy and have a mild pressure on my chest and I know I’m in it but for a long time I was always feeling like that but did not realise this as it was the norm until i had my first cadioververdion. . My pulse becomes completely irregular, and I get out of breath easily. While there are other signs, I'm not completely incapacitated. After cardioversion, I notice when I'm not in AF, but it returns after about 10 weeks and that when I see the difference. I plan to discuss the possibility of adjusting my medication with my doctor. I've also heard about the "pill in the pocket" approach with flecainide.
when I was in AF yesterday I went on this website and I went on another website and I found various different suggestions. There were many emergency room medical personal given treatment tips on YouTube about how to deal with someone with heart, palpitations or heart issues, maybe not necessarily the one I had so I tried those .
i tried valsalva manovour and i saw it on emergency room YouTube tips. Then I tried deep breathing with hands clasped across chest and legs up at 60% and this seemed to help. I notice improvement straight away with energy and pulse.
I've monitored today and noted improvements in my symptoms today at times . My finger pulse/bp/oxygen machine reader can read pulse straight away today ( it struggles when in af to do this as pulse is so irregular and goes from 58 to 95 up and down ) , I feel more energetic and not 100% but close and chest feels fine. I went up and down the stairs yesterday and was gasping for breath but today I feel better. I feel almost 95% as I did a few days ago. I feel a bit of pressure in my chest but very little.
. Counting my pulse manually this morning- it is much more regular than yesterday but tricky to describe but I’ll try (each ! = a pulse beat) so should be
! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! Regular spacing and all beats strong as others
Yesterday completely irregular
Now ! ! ! !! ! ! ! ! ! ! ! !! ! ! ! Regular but spacing a little closer or longer between beats but finger monitor can detect pulse asap which is good sign - I’m going to exercise and compare difference to yesterday - pretty regular but not perfect
Unfortunately ,i’ve repeated the machine reading and the manual reading and it is fluctuating. Sometimes the pulse is pretty regular and other times the finger reader can’t pick up any signal at all as it’s irregular but then it’s all over the place but I feel better than yesterday. Pulse is still irregular
I think you’ve introduced a wonderful new way of illustrating arrhythmic heartbeats with exclamation marks! And I admire the amount of work you’re doing to alleviate and control your symptoms. There is a great deal on this forum about various monitors if you go to search, and everyone seems to have their own favourites. I treated myself to an iWatch (recommended by my EP) as a kind of compensation for putting up with AF! It’s important to stop monitoring if it makes you anxious as that’s counter-productive.
You mention going to see your GP. I would definitely ask to be seen by an EP again,(electrophysiologist). In my case the wait was taking so long that I actually paid for a private consultation. That way I got a 40 min chat and all my questions could be answered.
The practices that have helped me the most have been deep relaxation, various breathing exercises, meditation. I also make sure to get a minimum half hour walk every day and no longer put my body through too much exertion as this can trigger AF.
Probably the best (and in some ways most difficult) advice anyone gave me on this forum was to “Get on with life” !
Thanks again. I’ve looked up life expectancy with AF and the most recent research I saw was it’s about two years less than the average and on the right medication seems fine. The issue is quality of life and when I have these AF attack it feels as if I weigh five stone heavier if that makes sense. Do you know any research that compares life expectancy with people with their aF obviously strokes but I’m on riveroxaban and buscubrol. I saw a private cardiologist when I went out of atrial fibrillation the last time after a cardio version. He suggested that I should take amiodatan and then do another cardio version, but I decided to wait for the cardio version and then continue with pinite after looking at side effects. He also said that the other alternative is just to live with it to live with fibrillation and cope with it while taking things to prevent stroke lower pulse rate, like the medication have just said, so keep taking flecanide , bisippbrol, riveroxaban and just put up with it, put up with the energy job because in my particular case it’s maybe 20% less energy so it’s significant but it’s not like cases where someone just can’t get out of bed. it is super noticeable when you’ve not been in it of fibrillation and when you go into it - my goodness the drop in energy and wellness and well-being is significant, but I think I was in AF for a long time in the past without really realising that this wasn’t normal so can be lived with, but I wouldn’t fancy the next part of my life to be 20% lower energy because it does make life more difficult to manage, and I don’t think it’s seen as a disability . The symptoms are basically being tired and aches but can be worse and most jobs and most people just think oh well eat more eat more sugar, get more energy and I think that’s the difficult thing when you’re still having to work
you mention you have an Apple Watch when you go into AF. How does that help you knowing you’re definitely in it. I know I’m in it because of the pulse rate changes and I get out of breath and I’m probably in it all the time until I get some sort of hospital treatment. So how would that help me? Do you think knowing I’m in AF. I think it would just say I’m in AF every day I mean do you think that would help me?
The iwatch I have is able to detect AF and provides an ECT that you can then send to your EP or cardio team. Obviously not quite as sophisticated as the 6 lead medical variety, but consistently accurate. When I was in persistent AF I just used it a few times a week to monitor my condition. Press a button for a minute and it’s all there on the screen. I believe you can also set the watch up to give alerts if you go into AF - more useful for paroxysmal AF.
I agree with Jim. I find it odd you have not been offered further intervention. GPs and cardiologists are not all up-to-date on the latest thinking with AF. My GP would have just left me to put up with the symptoms along with the anticoagulant and something to bring the heart rate down. At age 70 this was what one could expect up until a year or two ago. I was fortunate to go to a public talk on all the latest developments given by my EP where I learned that my best choice would be to have an ablation. The longer you remain in AF the less likelihood that an ablation will work . You can find out more about this procedure on the AF Association website.
Your symptoms sound quite debilitating so hope you get the right help soon. You will definitely be best getting advice from an EP rather than a more general cardiologist. I was so glad I did this. Thanks to a successful ablation I no longer have any episodes of AF. So I am rather biased.
I just made a post I can get another card or version but it will cost me £2000 2 1/2 thousand dollars or I wait 34 months to get it on the national health service. It’s a tricky one because it’s not sustainable getting these all the time being on the general anaesthetic and financially $15,000 a year just on those treatments if they did lose treatments six times in a year because normally I only last about 8 to 12 weeks out of AF after a cardioversion. In order to go on the cardio ablation waiting list I have to be out of actual fibrillation for six months a year and I need to take some very toxic drugs like amiodaran and I’m not keen
I'm surprised given your history you have not been offered a PIP approach to Flecainde or an ablation. Either seems preferable to being cardioverted each time you go into a fib. This is something you should discuss with your electrophysiologist and if you don't have one, this might be a good time to get a referral.
Not sure what "PIP dangers" you've read about, other than those associated with the drug itself but you're already taking it daily
Thanks for the reply - I looked up Flecainide and it was classed as a trigger for serious damage. I also looked at some comments. I think on this site where someone took 300 mg in one go and they were hospitalised. I know you can take up to 300 mg . my cardiologist said don’t do pip . It is something I’m going to talk to my doctor about so that when I have a incident, can I double the dose as I’m on 100 thanks
The question to your cardiologist would be why he is hesitant for you to do PIP when you apparently tolerate 100 mg BID(twice a day).
Frankly, the combination of 100 mg BID and PIP may be less toxic than 200 mg BID.
Also, have you considered an ablation?
Lastly, at some point a second opinion may make sense and in this case, you would probably want it with an electrophysiologist not just a general cardiologist.
Not saying this is the case with your cardiologist, but sometimes general cardiologists are a bit timid with the medications and ablation interventions compared to an electrophysiologist.
Thanks for the reply. Yes I’m gonna try to speak to my doctor but it’s so difficult getting an appointment in the UK with the NHS and then the appointment of the cardiologist will be two or three months so if I get another cardio version, it’s a three month wait While I’m in af
however, by the sounds of people’s experience here eg going into the emergency room et cetera. I don’t have anything like the symptoms that a lot of people have. They are relatively mild in comparison to what I’ve heard on this forum, but they’re still bad
I have not been ordered offered that pill in the pocket, but I have upped my dose to 200 mg of Fleck and the doctor says it won’t get me back into normal rhythm, but it might help the only thing that gets me out of VF is cardioversions and it’s a long waiting in England or it’s a £2000 bill. I could get another one done on Friday but £2000 every two months is a lot of money and at some point it’s not sustainable with all that general anaesthetic I guess.
I second Jim's comment about a PIP. I have Flecainide as PIP for my Paroxysmal AF.
This is not medical advice, and each person is different. But the max dose of Flecainide is 300 mg a day. My EP prescribed 50 mg for me and told me to take the first dose at the ER.
This happened about 8 months ago or so, I went to the ER, the ER doctor said the dose was too low and it would do nothing, after 2 hours and being on IV Diltiazem, he gave it to me. 2 hours later I took another dose and on the ride home I reverted to NSR. $3,500 lighter.
I have a hit and miss with Flecainide. 50 mg does nothing. I did 100 mg and then another 100 mg and 2 hours later reverted. My last AF (unfortunately 6 days ago) reverted 45 min after 100 mg.
So best advice sounds like talking to your doctor about increasing your daily dose and asking about trying the max for a few days to see if it will kick you back into NSR. Hope you find a comfortable solution. Elliot
Thanks it is the Doctor Who recommend in the UK the medication and is very difficult to see you cardiologist or an electrocardio ologist without paying the money
Start reading up on ablations, I'd suggest. I had similat symptoms to you when in AF. Not unbearable but heart definitely felt about 20% less effective with exercise. Enough for me to want to get it fixed ! Meds didn't work. CV's lasted about a week. I was so grateful to be put on the waiting list for ablation (6 month wait in 2019 UK)
Took 3 ablations to fix, Feb 2020, Sept 2020 and Jan 2021. From continous persistent AF to NSR........and now NSR for 3+years and back to normal physical activity.........and I'm still on the list for a 4th ablation if AF comes back (NHS allows you 4 ablations!)
Not without risk .....duringthe first ablation I went into asystole for a couple of minutes as they poked around inside my heart. Luckily I was in good hands and they 'got me back from the dead' as it were. My 'Easter' experience !......but I'm no saint now !
I checked with my doctor today and I need to be free of atrial fibrillation to have normal rhythm for about six months to a year. This has to be after cardio version and I’ve had two already. They suggest I go onto another joke and then if that drug keeps me in normal rhythm, then they would consider an an ablation, but the drug they mentioned is called amiodaran and it’s pretty toxic. I’ve read a lot about it affects your thyroid glands you can’t go out in the Sun you can even turn blue it sounds brutal. Thanks for the reply
I was in PERSISTENT AF for over a year before I had a successful ablation. That means there was no break. So it is nonsense that people must be AF free for 6 months in a year before ablation is offered. You most definitely need to have a sensible private consultation with an EP who will then refer you for ablation on the NHS if that’s what you want.
the cardiologists from the nhs and from private - they are the same here as the private ones work for the nhs as well. The rule for me for an ablation is I must take amiodaran which i toxic as they will increase my chances of maintaining normal pulse for a longer time and I need to show this prolonged period before they would consider ablation
Yes, my EP works across both private and NHS too. I had a private consultation with the same EP who later performed my ablation on NHS. I didn’t jump the queue, but I was put on the list for ablation sooner. I was told by my EP that cardioversion is really just a diagnostic tool to see if it’s likely an ablation will work. With CV I was in NSR for max 5 days, but still considered candidate for ablation. This is a normal experience on this forum which is why you should check it out. Maybe in your area they are restricting ablations? You need to find out why they have made this decision not to put you on a waiting list.
I took amiodorone for a few months prior to my second CV (which I had while on the waiting list for ablation). I was lucky no side effects, but it made no difference to my AF or the CV result and I was taken off it.
it may have been stress at work that caused it. It could’ve been drinking Pepsi Max with caffeine or it could’ve been sleeping badly. I got up one day with a really bad back and I’ve been reading about Vegas nerves and things like that, so you could be anything
I have episodes of about 20-25 hours, has always reverted so far. Use sotalol 80 mg as pip. Sometimes 120-140 (i take 40mg at a time but i an thinking i should take 80mg). Really affects bp and heart rate after reversion, low bp 105/55 rate 45-50 (55 pretty normal for me). Can't seem to do any better than 18-20 hours, just rest until it settles. I get a bit uncomfortable but not major breathless etc. I use a bp monitor when in af. I can tell when it is getting better as the rate drops to below 70 (from 90-110) consistently. Sometimes gives an error but is a useful tool for monitoring. Strange when reverting and the bp goes to 110/50 and pulse 45, amazing feeling...
I never ever revert to normal rhythm. I stay in atrial fibrillation. I could’ve been an able fibrillation for many years before I actually got it diagnosed. After the cardioversion, I last about 8 to 12 weeks in normal rhythm and I really see the difference. I could get a cardiovervion on done this week on Friday but costs me £2000 in the last eight weeks 12 weeks improves my health and well-being, but it’s expensive it’s not sustainable. The national health service is probably gonna wait less of 2 to 4 months at least two months. I need to be in normal for six months before they consider an ablation so the doctors have said that I need to go on another drug which I think is incredibly toxic amiodaran- the side effects appear to be brutal
I just use it as pip. I wouldn't like to use it all the time. It works well with me as a pip I think. On a low dose it apparently reduces the rate (40 mg for me) at a high dose it helps with rhythm (120mg?) I understand. I have a slow heart rate normally, if I had sotalol permanently I think it might be hard to take. I feel pretty wrotten when I take it but it seems to work. It really whacks my blood pressure for the following couple of days after stopping, 105/55 or something. I've never had amiodaran, my gp didn't like it because of the other side effects.
Thank you for all the replies in this thread. It was my first comment since joining. Today, I saw my doctor. I'm still taking these medications flecanide 100mg, bisopribol 5mg and rivaoxaban. , he agreed to increase my dose to 200mg flecanide. The cardiologist had mentioned that if I stayed out of atrial fibrillation for six months or longer, they would consider ablation. However, I would have to switch to Amiodarone, which I decided against and stuck with Flecainide. Then, I had another cardioversion 12 weeks ago, and unfortunately, I'm now back in full-time atrial fibrillation. I've been referred back to the hospital in England, where they might do another cardioversion or consider switching to Amiodarone, but it will take at least two, maybe four months. I have a private cardiologist whom I've consulted, and they will perform a cardioversion this Friday for £2000. The procedure itself isn't expensive, but there's a cost for hiring the operating theater, around £1400. So, my dilemma is whether to opt for private treatment because it may only last for eight to 12 weeks and isn't sustainable since I go back into AF every 12 weeks. Financially, it's not sustainable. Also, I've lost weight, about six stone, but I still need to lose another hundred pounds, and I'm stuck. I can get Wegovy but the doctor says I may need to wait until heart sorted but he has been saying this for a year and he's is noncommittal whether it is dangerous to take it . He mentioned waiting until my heart clears up, but I don't think that's going to happen and weight loss is key. I lost 6 stone about 100lbs but stuck and need to lose another 6 stone so wegovtly may help and it may help bring lighter my heart conditions . Does anyone have experience with managing atrial fibrillation and taking medications like this whhioe taking wegovy . Thanks
I would recommend a private appointment with your nearest EP (electrophysiologist) as they understand AF and suggest the best treatment for you. It will cost around £250 in UK.
I have seen my doctor and I have said that I have atrial fibrillation My BNP test that indicate risk of heart failure was 800 and is now 1700. The stats I have looked at are grim eg 80+% chance of death within 10 years and 50% for 5 years ( at around 2000 BNP near my numbers). Does anyone know if there is a treatment to lower BNP to under 300 the safe limit or is there a surgical/medicinal treatment that could be used? Maybe I am on the wrong thread so posted this as a separate general one as well. thanks M
update and any comments apprecaited - I had 1700 BNP which showed accute heart failure -Update - I had a private consulation with a cardiologist I saw on the phone. He said that 1) lose more weight 2) ablation is a good choice and I don't need to go onto amiodaran first or be in normal heat rate for 6 months 3) he suggested looking up sotalol which have much milder and rare side effect than amiodaran which has 50% chance of having some significant side effects 4) he said that wegovy would not interact with current medication and weight loss is a priorty 5) if I dont hear from the nhs in the next week or so then I will pay for an ecocardiogram from him and he can arrange this very quickly privately 6) he doesn't suggest a private cardioversion as not cost effective privately.7) finally he said the the BNP of 1700 may not be heart failure and could be due to atrial fibrillation. Question - anyone used sotalol and has anyone had experience of any of the above treatments/procedures?
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