I’m have AF constantly since months, maybe years. My heart rate is normally in range (70/80) and I don’t have any symptoms. I conducted an active and fulfilling life.
I went to the cardiologist for the first visit and he left me the 2 options:
1. Do nothing and go on with your normal life
2. Try cardioversion, see what happens and consider ablation only if the cardioversion works and brings a great improvement of quality of life (because my case is not even worth the risk)
I choose for the cardioversion, I know I have few success rate and it won’t be forever even if it works. In order to do the cardioversion, they put me in flecainide and edoxaban. These tablets changed my quality of life for a much worse turn. Edoxaban is making me bleeding from different parts of my body randomly (not major but still not pleasant). Flecainide brought up the range of my heart rate to (90/100), and it’s driving me insane under a series of small side effects.
I have to take the tablets for indefinite time, until after the cardioversion. They gave me there two options too:
1. Wait to October and take edoxaban only 2 months (1 before and 1 after). While flecainide is indefinite limited time, and this was not discussed with me.
2. Start immediately so that I can have cardioversion before October if a place comes up.
I chose the second one before starting the tablets. I tried to get in contact with cardiologist to discuss the flecainide and understand for how long they want me to take it, but it’s impossible to get to talk to him. I have only the cardiology nurse talking to me, which is lovely but can only do so much and she doesn’t decide about tablets. I’m thinking about refusing the cardioversion all together and go back to my old life, in which I was happy and didn’t have any problem, instead of going on with the prospect of six months of feeling bad and ill. I know my case is very unusual and probably the other situations are much different but I’m looking for general suggestions and what you think you would do in my place. I’ve taken the tablets for less than 2 weeks now and the impact on my mental health has been awful, it’s better now but I don’t see why I should do this to myself.
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The decision must be yours, but here something that may help.
The percentage of people with AF may be much, much larger than expected. My view is that there are numerous people whose heart has no problems to work efficiently in a new regime, without the cooperation of the atria. Their heart functions so well, that they never notice that they are actually AF-sufferers, so never go to visit the doctor and many die, never knowing that they have AF. My entirely free guess is that apart from 1,5% diagnosed with AF, in general population may be somewhere 40%-50% people with AF. This guess is not without base and the population screening in Denmark has shown about 40% people with AF (look prof Angelo Auricchio, in the internet).
You may be, like me, rare case where the person knows about having AF, without having any symptoms. My AF comes at night, almost every night, but switching from NSR to AF and reverse is without any sign, and when in AF, I also function perfectly well. The "diagnosed" cases of AF may be only those people, whose heart, for some reason, has problems to adapt to the new working regime, so they are very symptomatic.
Heard on radio I think that there was an idea to fix gadgets in the handles of supermarket trollies to test customers for AF while doing their shopping as it is apparently so common, but goodness knows how they’d decide which customer was pushing the trolly when!!
As far as I remember, in Denmark, about 10.000 people were tested, with 2 weeks holter monitor. It is very different to via trolley monitored shopping, lasting 15 mins for men and 2 hours for women, lol! But, in the study performed in Denmark, these 2 weeks were also not enough to catch all the people with paroxysmal AF, since the pauses between the bouts may be months, sometimes years. The truth is somewhere out there...
I believe that the real percentage of people with cardiac arrhythmia may be far larger than 40-50%. The limit may be about 70%, and here is why. In USA, but in UK also, the percentage of overweight and obese people is the same - 67%. All these people are susceptible to any kind of arrhythmia, so hence the my guess about the limit value.
I have never been overweight in my life but have paroxysmal AF. Guess that’s why when I saw the EP he didn’t think I had it until he introduced me to a smart phone and Kardia, and I sent him a reading when I was having an AF episode and he sent my surgery a prescription for Flecainide!
It is the fact, that not every obese person has arrhythmia, and, on the other hand, there are people with normal weight, who get it. It is a very rough guess (70%), but what is important, is that the percentage of affected people may be (is) far larger than 1,8% as diagnosed.
No, Bailey, I never get dizzy. It is all about how successfully your heart operates when in AF. My heart obviously pumps well enough, so, despite reduction in blood flow-rate of about 30% when switching to AF (someone gave this data, and it seems to me to be realistic), I never get dizzy or get any other symptom. My AF goes away as soon as I get up from the bed and get active. It was not so in the beginning - I would remain in AF till about 9-10 am, then it would clear up. Why is it now different?! I have got accustomed to it, like everybody else gets with the time...
Hi, and welcome. Totally understand where you are coming from. Strikes me there’s certainly a strong case for going back to the ‘do nothing’ option. After all, that option was given to you by the expert and presumably they didn’t add a ‘but’ to it and outline possible future serious negative health options that might occur in the future should you do nothing?
You’re clearly getting significant side effects from flecainide that, as far as I can see online, should go once you stop. I think it is poor that you can’t get access to the cardiologist to discuss this. A third option of ‘Start meds and see how you tolerate them’ would have been good? In a way, you can add that option yourself
My AF is not terrible and at times I have wondered if I might have been better trying to live with it (although I think it was bad enough to definitely require new medicines at a minimum) because once the treatments and procedures start you tend to be tied into continuing certain medications etc. I’ve now had 2 Cardioversions and 2 ablations , with a possible third coming up. Don’t get me wrong, big thanks to NHS for keeping trying! Multiple treatments are very common. I also had a hernia recently and I’m pretty sure(no evidence but it’s not uncommon) that was caused by the first ablation . NHS dealt with that pretty fast but it was quite unpleasant and groin isn’t quite the same now. So there can be various diverse consequences.
So (and obviously this is just my opinion) looking at your post for the factual info, going back to doing nothing, having given a big thumbs down because of your not tolerating flecainide well, seems like the best option. Good luck.
Treatments for AF for most are considered to be to improve quality of life. I found the drugs given for AF decreased my quality of life - so I stopped taking them and was much happier.
I’ve met many people as you, in permanent Af and function well so I don’t think you are that unusual.
I was very symptomatic in AF so I was given a pacemaker. It doesn’t stop the AF, I still get occasional episodes but they aren’t as symptomatic and I recover much faster.
If you are none symptomatic, are not aware of your AF and was perfectly happy prior to taking treatments, in your shoes I would do the same and return to as you were. The only caveat would be to consider anticoagulants if your risk score warranted it. I have no problems with Apixaban and certainly no excess bleeding, just takes a little longer to stop bleeds from cuts etc.
I find it hard to compare myself with people two times my age, because I wonder if anyone knows what happens in permanent AF after 30/40 years, when I will be the age of usual people in permanent AF. Also the GP and cardiologist insist on that point “normally we won’t do anything, but because of your age…”.
As you said, I stopped the meds yesterday morning when I was in front of the decision if I had to call my boss and go to hospital for bleeding and lose an other day in work (with massive impact on my mental health) or stop the meds and live my life. I had not a single doubt on what to do. And since I stopped, I’m reborn. Honestly I don’t think few weeks of Sinus Rhythm are worth months of misery and stopping all the other things that are good for my health.
Also I firmly believe that life is now and I can’t fix problems that are not there and that no one knows if and when they will be there. I might be dead in 5 years (for whatever other reason) and had spent my time and energies in fighting something that doesn’t kill me with a therapy that stops me from my daily activities. I will probably try to see other 2 cardiologists and see what they think, but I’m more and more convinced that I have to listed to my body and follow what makes me feel good.
Any and all treatment for AF is only ever about symptom control or to put it another way quality of life (QOL). The only exception is anticoagulation where appropriate as AF increases stroke risk by 500%. With your age and gender profile that should not be an issue for some years yet. Permanent AF is just an agreement that no future attempts to gain NSR will be made and rate control be the main treatment.
It sounds to me as if your status quo prior to this new treatment was pretty good so I know what I would do. Treatments should NOT reduce QOL!
One things for sure, you are right to approach this with caution. As you may know, most of us here are not medically trained so most advice offered is based on personal experience. As we are all different and because AF affects people in so many different ways, we cannot even be sure that any advice offered is actually going to be helpful so nothing is easy.
I was 67 when I was diagnosed with lone persistent AF. Apart from experiencing mild breathing problems I felt OK but decided to see my GP (those were the days!) I nearly cancelled the appointment but my wife persuaded me to keep it. My GP took my pulse and said it was irregular and arranged an ECG and chest x-rays at the local hospital the same day and an instruction to see him later the same day 😳.
When I arrived at the surgery in the morning I felt fine, when I left later that that evening, I was convinced I was going to about to die. I’m not a good patient in that I can react badly. The ECG recorded a rate of 120+ which I’m sure was not the case pre-surgery visit. The X-ray suggested signs of an enlarged heart (which turned out not to be the case) and I was put on a treatment plan identical to yours. I often wonder if I would have reacted differently if I knew then what I know now!
To cut a long story short, I was put on a lot of medication to bring the rate down, I had a successful CV and 2 ablations and have remained in NSR (with occasional help from Flecainide since 2014) and no Flecainide for the last three years. I have no regrets but I know several people who have AF and it has very little if any impact on their lives and they would not dream of pursuing any form of invasive treatment. However, they are in their 70’s+.
Your situation is different in that you are young and whilst you might not need long term anticoagulation, you may need to face a lifetime of taking fairly potent rate control medication if your resting rate starts to exceed 80 bpm. Most medics would recommend that intervention, ie ablation treatment, is more effective the quicker it is carried out but that tends to be for paroxysmal AF.
Sorry this is long, but as I said initially, the best AF treatment for any individual is not always easy to define. Hopefully you have confidence in your Doctor and with his/her help you will make the right decisions for you…..good luck
I can often have a resting HR in the 80’s when not in AF. Surely everything is relative. That might be the case for some very fit athletes whose HR was in the 30’s-40’s but for the average person? Last time I checked normal HR was 60-120. Have things changed that much?
Enrica says her resting rate is currently is between 70 to 80 but the Flecainide took it up to 90 and beyond which (her words) made her feel insane. If it’s taken as a regular maintenance dose, as I understand it, it should taken with a beta blocker or calcium channel blocker. Again, as I understand it, Flecainide normally tends to reduce heart rate so to me, it seemed reasonable to just make her aware that she could be close to being offered this treatment on a regular basis if she opted to take option 2.
As it was her Cardiologist who offered option 1 and the consensus of opinion from learned members tended to share that view, it looks as though that’s the route she is likely to take. So no, I don’t think things have changed that much but the normal range appears to be different to what you suggest and Enrica seems to react quite badly if her rate nears the higher end of the normal range……
My problem is not just the heart rate. My taste changed, I was so tired the first days that I didn't go to the gym (which is a very good thing for me), lost a day at work because I was totally drained. Blurred vision, my stomach is not the same... they are all minor but they decrease my quality of life.
The cardiologist called me back today and he said that many people that decide to do nothing then they regret it because in 2 or 3 years they develop symptoms. He said my heart will remodel, the tissue will scar and thicken, and I will have issues and we won't be able to do anything about it. Also he said that if it didn't go back to sinus with a week of flecainide, then it is already well established and I won't keep sinus after cardioversion without flecainide.
I understand that if cardioversion works I will have to go for ablation, so more meds, more things to run after to prepare for it. Ablation has risks and it is also going to scar my heart... so I don't see the advantage of this path of pain and problems. It all feels to me like a massive waste of time and energies on a problem I don't have now. Maybe I should look after my mental health and worry about afib when it will be a problem?
Cardiologist also said that he has many young people, but honestly I scanned the web and asked here and I found only one other person with constant afib and no other health/heart issues since young age, all the other are paroxysmal (or have heart defects or other problems)and I honestly think (from stories here too) that paroxysmal is a total different experience and situation. Afib is my normal state, I don't know anything different, I think honestly my body readapted to it. I have a very active life style and I have much more breath and energies than most of my healthy friends same age.
Enrica, like you most here have experienced what you are going through at this difficult time to try and establish what is the best thing to do. Just in the UK there are almost 1.3 million people diagnosed with AF. It is estimated that there are probably another 250,000 who have AF and don’t know it. This forum has 28,512 world wide members so the comments, problems, issues etc, etc published are a minuscule representation of what is happening in the world AF. Forums tend to attract people who experience problems and the truth is that 1000’s settle into a treatment plan and just get on with the rest of their lives. You’ve just raised a number of interesting issues and I’m happy to offer my take on most of them over the weekend because it’s late and I’m knackered. Try not to worry, we are a helpful bunch and although it’s not always easy, most get the help they need. You may already be aware, but there is a lot of information available on the AF website. Promise to get back to you over the weekend,……take care
My understanding is that there is a danger of heart re-modelling for sure but it’s not a given. You could chose to adopt and ‘watching’ brief ie:- have annual check ups and at the first sign of re-modelling chose to take action. Flecainide is not the only antiarrythmic drug so you could also explore other med options with you EP, they will all have unwanted affects granted but some meds suit some people more than others. Bisoprolol was the worst drug for me so I took Flecainide without Beta Blockers. I had virtually no noticeable side effects and I lived with high heart rate and never worried about it until I became symptomatic but that usually wasn’t until HR exceeded 130, then it became uncomfortable. Unfortunately there were signs that Flec started to cause other more dangerous arrythmias so it’s not the benign drug many would have you believe. Like everything there are mixed opinions and experiences and a second opinion may give you a different outlook but it helps if you and your EP can negotiate so that you can keep them on side for future possibilities?
There are also other possible treatments such as Hybrid Mini Maze which is a more serious procedure than catheter ablation but has a higher success rate for those in persistent AF. Ablation techniques and technologies are also improving and there is a new trial on Pulse Field Ablation which is showing promise so waiting a little while could also work in your favour.
I had 2 ablations and having done the drugs and the ablations and still the AF returned so even if you had the ablation, as you will see from other replies to this thread, you may have to repeat the procedure.
The symptoms you describe from the Flec are hardly minor if you had to take a day off work! I go by the mantra - you are the expert on you and your body, your doctors are the experts on the condition so ideally you need to create a working relationship that can jointly make the best decision based on the best information available for you.
PS - Hybrid Mini-Maze is performed by a Thoracic Surgeon - not an EP if you look at the posts from MummyLuv you will find a lot of information which she generously shares with members.
Very impressed you get to see an EP. The only way I did was to find one on the AFA site who I saw privately - that’s how I got the flecainide but it was soon after my diagnosis four or five years ago after the lowest dose of bisoprolol taken daily brought my heart rate down dangerously low! My surgery doesn’t seem to go in for referring patients to appropriate specialists!
I paid for the EP too. Still waiting for NHS cardiologist. The GP diagnosed AF but didn’t refer me, I went to A&E because I was desperate for referral and that’s how I got the medical attention from NHS.
Absolutely nothing happens to my AF, I self convert in a few hours. Drugs are choice, not a compulsion. I was SO ill on the drugs that AF is far preferable.
I do take anticoagulants as my CHADS score is high. I have had probably 7-8 episodes in the last 5-6 years, since pacemaker. I’ve rarely had HR exceeding 150, which I cope with, although I need to put my feet up when it exceeds 130 as I have low BP.
The longest I’ve had episodes without taking meds before pacemaker was about 3-5 days but I always self converted in the end. Yes, heart rate used to go high 180-200 at times and yes incredibly symptomatic but I could cope with that . I couldn’t cope with the affects of the antiarrythmic drugs or the heart rate drugs.
What you need to hold is that the heart meds exacerbate my other condition which is FAR more disabling than AF for me. I should be on steroids but they would exacerbate the arrythmias so lesser of two evils to put up with AF. I can’t tell you just how much a difference the pacemaker made though as I only get episodes now if my inflammatory markers are high because of infection. Go well.
I am on 50 mg x2 of Flecainide and feel horrible. I am 85 and EP wants me to keep taking, said it just a tiny dose. I take with a beta blocker which have taken for 30 plus years for tachycardia from Graves’ disease. Also take Eliquis.. I also have mitral regulation but Dr said shouldn’t be having this fatigue from that. Think I will stop for couple weeks to see if I feel any better, I just want to sit and do nothing. Feel my best when I first get up before I take any medication. You give me hope. Of course, I realize you are a lot younger than me but hard for me to believe this fatigue is all age related . Guess we will see.
it was making me feel so tired. I would imagine that it can have the same effect at any age. Just be careful if your heart rate is high, mine is low, I don’t need to take flecainide, I was taking it only because of cardioversion. Look after yourself x
I will continue the beta blocker and Eliquis when I go off Flecainide for two weeks to see how I feel. Just want to see if Flecainide is what making me so fatigued or should the doctor look for another reason. All my yearly blood work done in March, completely normal.
I am 79 and find the 100mg taken morning and evening add to my fatigue but keep my heart behaving properly and I did manage a lovely walk on Thursday in the beautiful countryside where we live with only a brief bit of tachycardia!
I’m going to comment on the points you raise. I have to remind you that I am not medically trained and the information I offer is based on my understanding of information obtained from countless presentations by NHS employed medics who are leaders in their field. They too are obliged to make it clear that their views are based on generalisations because everyone is different and AF is what we call a mongrel condition.
“My problem is not just the heart rate. My taste changed, I was so tired the first days that I didn't go to the gym (which is a very good thing for me), lost a day at work because I was totally drained. Blurred vision, my stomach is not the same... they are all minor but they decrease my quality of life.”
Almost all Arrhythmia medications, whether they are for controlling rate or rhythm are quite potent and unfortunately, bring with them side effects and as they say, no pain, no gain. As has been said, there are a number of alternatives for each type therefore there is scope to find a drug which suits you best but it is almost inevitable that unless you have some form of invasive procedure, at some stage you will be advised to take medication. At the moment, you say you are asymptomatic but as your Doctor has said, this can change over time and you will not know until it happens. AF is a progressive condition but the manner in which it progress is again different for everyone. Normally, a patient with Paroxysmal AF will find episodes become more frequent, longer and eventually persistent. For people already in persistent AF, from what we hear on the forum, the symptoms can change because they talk about changes to doses or types of medications to compensate. I don’t want to sound alarmist, but as I understand it, whether asymptomatic or not, if AF is not controlled, it can eventually lead to heart failure. This sounds dramatic, but heart failure can be treated but brings with it more symptoms and more drugs,
“I understand that if cardioversion works I will have to go for ablation, so more meds, more things to run after to prepare for it. Ablation has risks and it is also going to scar my heart... so I don't see the advantage of this path of pain and problems. It all feels to me like a massive waste of time and energies on a problem I don't have now. Maybe I should look after my mental health and worry about afib when it will be a problem?”
Unfortunately, almost all treatment brings with it a degree of grief of one sort or another and only you can decide whether it should be seen as an investment for the future or a reason for keeping the status quo.
You don’t HAVE to do anything you don’t want to but in the UK, ablations are only offered if the EP is reasonably confident that it will be successful.
Personally, I’m wondering why your Doctor is not offering a CV without rhythm drugs first. CV’s carry risk of course but it is deemed as negligible and any hospital where it’s carried out has the resources needed to deal with the risk. Unless you have had an Echocardiogram or some other test to assess the your heart function, it’s fairly normal to do it without medication apart from the anticoagulation which IS essential.
If it fails, a second cardioversion, this time supported by a rhythm drug is offered and if it works, even for a short period, it is only then an ablation might be offered. Of course an ablation has risks, but so does crossing the road. Close on 9000 ablations are performed a year in the UK alone and the NHS would not commit to that level of investment unless they thought it was worthwhile. Regarding the scarring of the heart. For the procedure to be successful, the tissue (very often the pulmonary veins) needs to be scarred using either heat or cold, to prevent the rogue signals which cause AF from firing. The equipment used is highly sophisticated and the degree of scarring is controlled far better now than it was when ablations were first introduced. You are only in your late 30’s and I appreciate your dilemma and the suggestions to hold off treatment until your situation changes are well worthy of consideration. When you talk about pain, I’ve had one CV and two ablations, I may have experienced some discomfort which has long since been forgotten but no pain. BobD has had three for AF and often says he would rather have another one than go to the dentist!
I cannot comment on whether mental health should take preference to treating AF
“Cardiologist also said that he has many young people, but honestly I scanned the web and asked here and I found only one other person with constant afib and no other health/heart issues since young age, all the other are paroxysmal (or have heart defects or other problems)and I honestly think (from stories here too) that paroxysmal is a total different experience and situation. Afib is my normal state, I don't know anything different, I think honestly my body readapted to it. I have a very active life style and I have much more breath and energies than most of my healthy friends same age.”
Whilst AF predominantly affects “old farts” like me, it does affect people in much younger age groups. It is very common amongst people involved in extreme sporting activities, This is going to make it sound as though I’m posh, but trust me I’m not, as those here who have met me will attest. My wife’s hairdresser has a son who was a trainee for Chelsea Football Club who was 18 when he had an ablation (ironically carried out by my EP). He is well, fit and still playing football at club level . There are 1000’s of AF patients who have had ablations and no longer need to take medication other than anticoagulants. In my case, I still take a small dose of a calcium channel blocker because my blood pressure is at the high end of norm I work on the principle of “if it ain’t broke, don’t mend it”!
CD has already mentioned the Hybrid MiniMaze ablation procedure which unfortunately, is not easy to come by on the NHS and it is thought that the success rates for patients with persistent AF is better than conventional ablation. MummyLuv is the forum expert on this procedure and she will help if she can.
I think that understandably you are in a dilemma, a kind of crossroads. Obviously I don’t know if your cardiologist is an EP (Electrophysiologist who is a cardiologist who specialises in arrhythmias). If he isn’t, he might be prepared to refer you to one for a second opinion. Alternatively, if it’s possible, many people have benefited from having a private consultation so that you can have an expert’s opinion of what might be the best route forward for you. As I have said good luck, I’m now going for a lie down in a dark room 🤞😉👍
Thank you for the detailed answer. My blood pressure is very low and my heart rate is in range, I don’t think this leads to heart failure. The most stressful part of Afib for the heart is the tachycardia, my understanding, but I don’t have any of that thankfully.
My cardiologist is an EP and I’ve seen him privately. He thinks cardioversion will not work or only few hours if I don’t take the anti arrhythmic drugs, he said if this one doesn’t work I might have to go for the more powerful one and second cardioversion.
All the the people in family with heart issues died in their 90ies and had a normal life. Unfortunately I don’t know what type of heart problems they had. My grand grandmother had 2 heath attacks and a stroke in old age and she was 95/97 when she died, I was 6 or 7.
Honestly, it’s one day I stopped the meds and I feel so much better. I had also palpitations with Flecainide. My taste is back to normal and I can do all my usual activities. I’m planning to get to talk to the NHS cardiologist and another one to have an other opinion. My instinct is telling me that I should leave this for now and think it through better, and focus on my general health and quality of life.
Thank you for the detailed answer 🙏 very appreciated.
There is one thing you may wish to discuss with your Doctor regarding the cardioversion. Whilst any procedure carries a risk, the medics seem to suggest that risks associated with a CV are minimal.
Remember, I am not medically trained but it is my understanding that a CV is an attempt to stop and reset the the heart. Nothing is done which will medically change the structure of the heart, it will (hopefully) just cause it to restart but in rhythm. Sometimes the AF can return immediately, I’m not sure, but I recall being told that if it does, it will be no worse than it was before the CV. Normally, it will cause NSR to return but nobody knows how long for. It might be worth asking your Doctor for his opinion regarding to what extent he/she thinks that should AF return, is it likely to be the same as you are experiencing now.
thank you. I’m not worried about the cardioversion but about taking the tablets for 6 months, they are decreasing my quality of life visibly… I understand the cardioversion for my situation could well be unsuccessful, to me it’s not worth 6 months of misery.
I know Enrica, it’s just worth considering that in itself, the CV might not make you current situation worse but it’s understandable that you are not happy taking the medication that accompanies it…..
Myself l would take the 1st option and carry on as normal. Make sure your electrolytes are in sync. Since l was diagnosed l take extra supplements especially magnesium and vitamin B C and D. You have to find out what is right for you as we are all different. Since l have done that and changed my diet l have been much better. It’s not a cure but has reduced my AF episodes. I cannot tolerate the drugs. They make me sick and made my life a misery.
May I ask how was it determined you have AF ? Not unusual, AF can often be silent especially in the young.
Evidently the doctor feels it is necessary to convert you to NSR with a cardioversion and prior prep with flecainide and an anticoagulant to insure success and prevention of clots. The cardioversion will be a barometer for the path forward with other treatments.
Encourage you to be positive. Be patient and realize that medications have side effects which often lessen over time. The flecainide will help insure a better result with the cardioversion. Edoxaban will greatly lessen the chance for blood clots during the procedure.
At your age (38) you are a candidate for other procedures including the maze procedure. Info available on this site and by internet search. You have an excellent chance of positive results. Definitely discuss with your doctor, but it is likely best to treat the AF now because it may worsen over time.
Keep a positive outlook (though challenging). Best to you in managing your health.
Not sure how it is called, it’s a think they put in your finger to check the pulse. yes, holter done and several ECG. As I said I’m in persistent/permanent Afib full stop, no one had doubts about that. Since March as far as we know, surely more. One week of flecainide didn’t make it any better.
Cardioversion will help and the flecainide will help prepare. Key at this point is heart rate control which yours seems to be. And the Edoxaban to help prevent clots.
I discovered I had a fib at the start of Covid thanks to my Apple Watch. Ignored the texts initially and then had a phone call with GP who put me on apixaban due to history of strokes in family and my ageand also blood pressure tablet. Once Covid restrictions lifted I had a cardio version lasted about 12 hrs . Since then I’ve had another which didn’t last very long. I am in permanent a fib. It was suggested I took amiodronine a rather toxic drug for 6 months and then try another cardio version. I have currently declined this offer as th drug is pretty toxic and can to irreversible damage, lungs thyroid etc. my heart rate is 60-80 rising to 120 on exercise but falling fairly quickly after. I walk 5k everyday and swim for 30 mins twice weekly albeit more slowly but I am 74, although I was doing more before this. Stairs and hills make me breathless but on the whole I have decided to live with it! I do have days where I’m walking through treacle! You are probably years younger and anxious apparently loads of people have afib and just carry on as normal. Give the cardio version a go and reassess . Good luck
I am in persistent/ permanent afib and am very happy with my quality of life. I have never been offered any treatment (maybe because I am now 77 years old) and have accepted that. I take 30mg Edoxaban 2.5 mg bisopropol and supplements of magnesium glycinate, taurine. Vits b c & d and a tiny bit of potassium powder every day. I may struggle a bit up hills but stairs aren't usually a problem. I have plenty of energy, cycle, swim, canoe, play golf etc.
Any decision is totally yours. But you must totally know about all the risks and benefits of any intervention and all drugs.
I strongly advice that if you definately have AF that you take an anticoagulant.
Put simply: on the left atrium you have an appendage (like an elephants ear) it fills and empties with blood when the heart is beating correctly. When in AF, the blood in the appendage doesn’t empty fully. The blood then clots in the appendage. Then, when the heart does a good job, the clot is forced out of the appendage and into the blood stream, resulting in a stroke.
Please think carefully about taking an anticoagulant.
At the age of 38 and without any co-morbities, there is no justification for increasing the risk of brain haemorrhage or brain-bleed stroke by taking ACs. The Chad2vasc2 scoring system is there for very good reason and the idea that everyone with AF should be on ACs is not supported by either statistics or medical protocol.
I've been through paroxysmal AF and all it entails, but no 'electrical' cardioversion, not any ablations. For me Flecainide was the wonder drug, reduced those awful AF episodes to one or two a year, and those were just before I was thinking of going to bed. When I woke up no AF at all. And then at some stage between cardiac annual appointments my heart went into persistent AF, though asymptomatic. I was taken off Flecainide.Tests were done, yes it was definitely persistent. A GP on my local practice who has specialist knowledge of AF put my mind at rest. The consultant had offered to put me on Diltiazem. It sounded as if he felt he was failing unless I took up the offer. I decided there was no need for Diltiazem unless my resting heart rate increased significantly, which it hasn't yet, five or six years on. So for persistent AF, which I describe as permanent, I take no medication. I do take an anticoagulant to hopefully protect me from having a stroke. My medical record states that NOACs, now known as DOACs, are Contra-indicated, after Rivaroxaban, caused more problems than it solved. My choice has always been Warfarin.
Because I am also asthmatic beta blockers were never prescribed, until a well meaning hospital doctor put me on Bisoprolol. 7 weeks later the first side effect appeared, painful rashes, diagnosed as urticaria. I was being weaned off the beta-blocker when the second side effect arrived: Sudden onset of asthma. Thankfully I was in a pharmacy when it happened. It was sudden. Absolutely fine one minute, open-mouthed gasping for breath the next. Ambulance called, with two nights in hospital while steroids brought my lungs back to normal.
The difference between you and me, apart from gender and lifestyle is age. You're 38, I'm 78.
I had a change to my health almost 3 years ago, while going downstairs I slipped on a bit of sick from my cat, and ended up with a fractured right fibula, which healed, plus foot drop, which hasn't. In my right leg, my peroneal nerve is damaged, so it can't tell a muscle to pick my foot of the ground when I want to walk. Immediate result is that I fell over a lot. You learn to take your foot off the ground by raising your knee. The hospital gave me a plastic Ankle Foot Orthotic (AFO), and later I was prescribed a carbon fibre AFO, which is much better. I can't drive, so I walk much more and use public transport. My permanent AF is not affected by these changes. I'm a bit fitter.
An elderly friend (90 this year) has had permanent AF with your heart rate for many years now with no adverse impact on his lifestyle or heart, so far as he knows.
I'll have to ask him but Im not even sure he knows for certain as the first he knew of it was when he fainted in his kitchen, I believe, and that was many years ago. It's interesting as he never seemed to have had paroxysmal AF, although, again, he might not have recognised the symptoms if the rate stayed low.
I think you are right about the rate. I used to get a low-ish rate of 85-135bpm but the last few occasions (it's very occasional...) have been at a high rate of 150-180. That is hard for me to cope with, mostly because it creates an awful level of anxiety.
The cardioversion is one thing and maybe it’s worth trying but an ablation at 38, basically scarring your heart for life when you are fine as you are doesn’t seem a great idea to me. I suspect that now people are being tested more eg the supermarket trolley initiative it will be found that there are many young people in your situation. My daughter was told that my granddaughter (aged 15) has an irregular heartbeat (no name given) but not to worry about it. People who are symptomatic are advocates of all sorts of interventions to restore NSR, those symptomless people with permanent AF not so much! Best wishes whatever you decide ❤️🩹
Can you check your Edoxaban dosage? Weight on or below 60kg should only be given 30mg, but they seem to like to dose everyone with the max. I queried mine with the surgery pharmacist and she agreed and lowered the dose.
When they first prescribed it for me they gave me 60mg. It was only when I researched it that I found out the weight/dosage difference. I’m only 61kg so I’m happier taking the lower (half) dose).
firstly, if Edoxaban is making you bleed, you must get advice, especially if you bang your head at all. This is vital.
Regarding stroke risk I think in the paragraph ‘Simply Put’ Suebo2 is expressing what ‘can’ happen to cause a stroke although it rather reads as if it ‘will’ happen. From information I have gleaned off this website and reported studies it seems that the size and shape of the Left Atrial Appendage (LAA) plays a large part in determining the likelihood of a blood clot forming. We will only know more as further studies are completed.
The statistics show that 0.5% of the general population of a certain age will suffer a stroke and that this % increases to 2.5% of the population that suffer from AF. I’m sure that the 2.5% is skewed by age and whether you are persistent or paroxysmal. As the AF population contains a large number of people who don’t even know they have the condition, the statistics can easily lie.
You are only 38 and the demographic instance of stroke is probably tiny in your age band, hence the doctor offering you the option to do nothing.
The good news for you is that you are young enough to live through to a time where the medical profession will probably make significant strides in solving the AF burden. There may well be solutions offered like a Mini maze or LAA occlusion which remove the decision of whether to go on anticoagulant. I’m sure that these procedures will be offered more readily to people that react badly to anticoagulants.
You haven’t mentioned whether you have an Echocardiogram done. I would push for this to be done as well. Amongst other things it determines the size of the left atrium which in turn can predict the likelihood of success of an ablation.( enlarged left atrium is bad news )
Anxiety has a huge part to play in our problem. As I have discovered, anxiety over the medications is just as much of an issue as anxiety over the actual condition, You say you are suffering from minor bleeds. For this reason, at your age, I like any option that doesn’t involve drugs for life.
For the cardioversion there might be an alternative to the anticoagulant which is upsetting you so much. The medical staff have the ability to look for a blood clot in the LAA before they do the actual cardio version by using a TransEsophogeal Echocardiogram ((TEE). It’s not a pleasant experience apparently but you could ask about it. I suspect that the cardiologist would have thought of this though and decided a few months of Edoxaban was worth it because the TEE has risks. But this decision may be changed knowing you are bleeding.
Sorry to hear about all the problems you are having, but it could be that your body has got to get used to the issues you are having with these drugs. Maybe as time goes on you will start to feel better. I hope you do
I hated taking Flec. It did nothing to stop the AFib and when I reported double vision it was stopped immediately. It works for some people, but it certainly did nothing positive for me.
I take Flecainide as a PIP and it hasn’t (yet) given me double vision, but when they put me on it for a month prior to a cardioversion it gave me some crazy optical disturbances - really trippy! Now I need to take it more often as a PIP again, I just find my eyesight is are getting steadily weaker and my glasses prescriptions are getting stronger every year
Nothing. No drugs were having the slightest effect. I just took edoxaban for a few weeks until I ended up speaking to a cardiologist (privately again!). He prescribed Amiodarone “just to get me through an ablation”. Initially I was told that would a four(+) month wait. However after taking myself into A&E again with breakthrough bad PAF (whilst on the Amiodarone), I was subsequently escalated to an “urgent ablation” four weeks later. Told me they didn’t want me on it any longer than necessary. 🫤
We must make these decisions based upon our own experiences. In your case? I believe I would choose to go back to doing nothing, but would ask doctor about taking blood thinners to avoid stroke.
a friend of mine, who also is a chiropractor, and into very holistic lifestyle is also permanently in AF she also chooses to do nothing and continue her healthy lifestyle
I would not go through all that! I was on Flecainate for on year and they took me off because I had some thicking around my heart! Now they have to find me something else I have tried another drug but it made me dizzy so I feel like giving up because I do have symptoms a lot!
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Nothing like a episode of AF to reinforce the decision to have an ablation done.
Persistent/ permanent AF episode and exercise 
