Awaiting Cardioversion for Afib and views sought on best treatment thereafter.

[Paul5851]

Hi everyone - I’m new here and seeking to benefit from the experience of others. I’ve just turned 55, Male. My historyis as follows. I was diagnosed with atrial flutter in sept 19 and had cardioversion end of Oct 19 followed by a successful right atrium ablation end of Dec 19. I was told statistically that I had 50% chance of developing Afib after the flutter and just my luck I had what I think was a first bout of paroxysmal Afib in March 20 mixed with tachycardia. I bought the kardia device on the advice of the arrhythmia nurses and had further episodes approx 3/4months apart for the following 12 months or so. Each episode lasted 3/4 hours and self terminated. I was given bisaprolol as PIP to take as required. I was also having ectopics and odd funny beats almost daily in between the bouts. Over the last three months or so episodes of funny beats increased and when sending ecg recordings to the nurses was told they were bigeminy ectopics mixed with bouts of atrial tachycardia. Anyway, I had my most recent Afib episode 3 weeks ago which this time didn’t terminate and is still ongoing. I’m now on 2.5 mg Bisoprolol per day (more if I feel I need it) and blood thinner tablet pending cardioversion first week in December. The arrhythmia nurse has suggested that I commence 50mg flecainade per day after I’ve been on the blood thinner for the requisite 4 weeks. I’m assuming that’s to aid the success of the cardioversion which I’ll be having a couple of weeks later. My concerns are (1) that being in Afib for a number of weeks might mean I’m less likely to recover NSR after cardioversion? (2) what side effects the flecainade will have on me? (3) What treatment will be offered post cardioversion? I’m minded to insist that I be placed on the list for ablation given the potential side effects of the various drug treatments that would be the alternative to ablation. I’m otherwise completely healthy as far as I know. I had an echocardiogram done in 2019 when I had the flutter and heart structure was normal. It’s a mystery to me why I’ve been cursed with this affliction. I’m fit, dont drink, eat healthily, play football twice a week, do the gym and cycle a lot. I want to be able to return to doing most of that and resume living an active and healthy life. At the moment I’ve stopped the football and cycling pending cardioversion as I become almost incapacitated if I run:cycle more than a very short distance especially up hill. My Hr with the Afib seems to settle at anything from 80 to 120 bpm at the moment. Any input from anyone who has been down a similar path would be appreciated. I’m loathe to get too deep into these kind of forums as I think we all have different paths and reactions to Any illness and it’s treatment and you can worry yourself to death if you let it become all encompassing. But at the same time the past experiences of others can also be intuitive. Thanks for reading this

[Hidden]

Hello Paul and welcome to the forum and thanks for the detailed history which is always helpful. Firstly, you need to be aware that the vast majority of folk on this forum, me included, are not medically trained and although there is a considerable amount of knowledge and experience around, anything and everything you hear needs to be discussed with your medics because we are all different and they will (hopefully) have a better understanding of your medical needs,

Although you sound quite athletic and active, maybe you do not fall into the category of being an “extreme” athlete but it is important that you understand that excessive sporting activity can and often is, the cause of having AF so I suggest to research that. We often hear of folk who have all the treatment available but because of their determination to continue pursuing their passion, the treatment fails and they soon go back to square one.

It’s a bit of an over simplification, but AF is known to be a progressive condition but the rate of progression is impossible to determine and things like lifestyle changes etc can have a major impact on slowing down progression. Normally, cardioversions are only used for patients with a persistent Arrhythmia and the purpose is to see if the patient can be reverted back into sinus rhythm and provided they feel improved, it is a definite signpost to an ablation therapy. Most prefer to avoid a lifetime of fairly potent Arrhythmia drugs if possible and the younger you are, the more important this becomes for some.

You are right, a regular daily maintenance dose of Flecainide is often used to help maintain sinus rhythm after a cardioversion and very often it is used before and after an ablation but these are all things which need to be discussed with your EP and the Arrhythmia Nurse but from what you are say, it sounds as though your medics are pursuing a treatment plan which is very similar to what I experienced.

I hope this helps, others here will share their experiences but I think you will find it helpful to research the AF Association website and clicking on the link below should help……

healthunlocked.com/afassoci.........

[Hidden]

Ought to add, I was on a maintenance dose of 2 x 50mg Flecainide for around 6 months and was not aware of any side effects. If taken as a regular maintenance dose you should also take either a beta blocker or calcium channel blockers daily.

[Paul5851 in reply to Hidden]

Hi Flapjack - thank you for your informative response. Much appreciated. Yes, the idea is that I start taking the Flecainade a couple of weeks before I’m due to have the cardioversion. What I’m not totally clear on is whether the thought is that it might potentially revert me back into sinus without then needing the cardioversion, or, if it’s to assist the cardioversion? Could I ask how your treatment went and was it successful?

[Zeinmassri in reply to Paul5851]

I’m a 35 year old healthy male who was recently diagnosed with Afib and a flutter. I don’t smoke or drink as well and I work out 5 times a week but unfortunately I recently found out I don’t have a normally structured heart and that lowers the success rate for ablation. Currently waiting for an ablation for my Afib and flutter which will be done at the same time I hope. I’ve had two failed ablations but I think you stand a much greater chance because your heart is structurally normal. From the sounds of it your taking all the appropriate measures and hopefully you will be able to revert back so sinus rhythm with out having to ablate. But my advice is also don’t be discouraged if it doesn’t work and try not to stress out about it because anxiety and stress are usually main reason why Afib and flutter come back . Be grateful it could worse and honestly I know so many people who manage to live life to the fullest with our condition. I’m a firm believer that god doesn’t burden a soul with more thank it can handle. Just hang in there and hope for the best.

[Hidden in reply to Zeinmassri]

Please don't hesitate to contact AF Association for support & information should you need it: [e-mail] / 01789 867 502

[Zeinmassri in reply to Hidden]

Thank you I appreciate the information 🌹

[Hidden in reply to Paul5851]

Very often taking Flecainide as a PiP is used instead of a cardioversion. Once in sinus rhythm, CV are not carried out, so if the maintenance dose works, there is no need for a CV.

I’ve had one CV followed around a year later with a Cryoablation. The EP had problems with one pulmonary vein due to irregular tissue so a year later this was followed up with a RF (radio frequency) ablation but after 7 to 9 months, I had a series of mild episodes and all were quickly stopped with Flecainide PiP. A third ablation was planned but I had treatment for an overactive thyroid and this year so far, I only had one mild episode,c so the ablation is in hold subject to a review next May.

Of course, we are all different and my experience is probably unique to me but you did ask….😉

[Dr-Gohan]

Hi Paul and welcome to the virtual mob of us who are experiencing life with verying degrees of heart issues.I was diagnosed on 9/11/2019 with AFib.

Immediately given medication like most

patients, Tested and main problem was fatigue and breathlessness.

Meds were helping, but quality of life was reduced to sitting on the couch and taking my BP every few hours.

Finally, Cadioversion was scheduled and done twice. Results were the worst. I went back into NSR for less than 20minutes.

Lived on medication and accepted the fact that this was as good as it was going to be for me.

Finally, I was referred to EP. He suggested an implant of heart pacer plus defibrillator to protect me from heart attack.

Once again I figured this is as good as it gets for me.

Then I began to research ablation

procedures. I spoke with the EP and he agreed I was a good candidate and agreed to perform the Cryoablation on April 29, 2021.

On October 3rd, I hit 76 years of age and I am still in NSR.

My quality of life has returned to normal. However, my life style is very changed.

No running, no smoking or drinking, no salt. Lots of fresh fruit and vegetables. Mostly raw for better nutrition.

I have given up anything negative, I no longer watch the news or talk politics. I focus on the positive things in my life.

If I catch myself. feeling down, I say "wiggle your toes and be grateful" mental health is part of my program.

One more tip is the need to rest and sleep.

Good luck to you Paul. You will get better.

[Hidden in reply to Dr-Gohan]

Please don't hesitate to contact AF Association for support & information should you need it: [e-mail] / 01789 867 502

[DSA58]

Paul, hope this helps, I was 58 when first diagnosed, like you I was puzzled( even annoyed) that being so fit, non smoker, never any alcohol whatsoever( !) that it was happening. But unlike you I was OVER exercising-high intensity heavy weights 3 times weekly( been a natural bodybuilder since age 20 weighing an athletic 15 stone at 5'10"), squash twice weekly, interval fast running 3 times weekly. My cardiologist told me in no uncertain terms that it was probably self inflicted-trying to do the same at 58 as I did at 28 ! Anyway I immediately gave up completely my obsessive over-exercise and began instead walking briskly one hour daily about 3-4 miles up and down hills( I still do that now). I had 2 cardioversions(no ablation-a personal decision after much research and advice on the pitfalls and dangers) The first cardioversion was a long time being arranged so was 8 months after diagnosis. Both cardioversions lasted one year each in normal rhythm with the help of multaq and apixaban, but also gave me unbearable pulsating tinnitus each time-a definite side effect. I refused a third cardioversion and now am living with permanent AF and no pulsating tinnitus. Also until I am 65 my chads-vasc score is nil so I am taking no blood thinners (personal decision against medical advice) and no heart rate drugs. My resting heart rate averages 75 when for all my exercise years it was 50-55. My blood pressure is always low as can be expected with fit people in AF- 110/70. My weight has returned slowly over 4 years to my teenage 12 stone for a natural athletic build. Please remember that like wiser people than me have said-none of us are experts and we each follow our instincts and do what we think is personally best. After all the medical advice and our own extensive research I firmly believe we have to take the initiative ourselves and make personal decisions. If I had unlimited funds I would definitely have my own Electro Physicist and cardiologist and have regular echocardiograms and exercise stress tests. I currently lead a perfectly normal life by any normal comparison- I can do all normal physical tasks without any problems or breathlessness. BUT importantly since diagnosis I have never and will never attempt any heavy or excessive physical exercise. I firmly believe for what it is worth that if you are super fit when afflicted your chances of living with AF as though it wasn't there are good. At 65 it might be sensible to consider anti-coagulants but I am not convinced I will.( again a personal decision). Best wishes with your research and your attempts to live with it.

[Hidden in reply to DSA58]

Please don't hesitate to contact AF Association for support & information should you need it: [e-mail] / 01789 867 502

[KMRobbo]

After trying the drug route for 20 months and getting more frequent afib attacks which meant more different drugs with side effects I went for a PVI cryoablation 7 months later . No afib now for 3 years 10 months, not taken any drugs for 3.5 years.

[Hidden in reply to KMRobbo]

Please don't hesitate to contact AF Association for support & information should you need it: [e-mail] / 01789 867 502

[listerines]

Hello Paul5851, what i don't understand in your case is why there is a wait to start the daily flecainide? I am certainly no doctor, but my take on antiarrhythmics is to use them along with a beta-blocker to try to put you back into sinus rhythm and reduce the duration and intensity of future episodes. If this does not work then I can appreciate exploring a cardioversion and like others have said, there would be an ongoing medication regimen post cardioversion to assist with heart stability and longer term cardioversion success. Perhaps you are making a personal decision on the antiarrhythmics and certainly can respect that. That said, the research, at least for those with paroxysmal afib, is pointing to ablation sooner rather than later to increase chance of postive longer term heart stability.

Perhaps things to discuss with your care team

[Paul5851 in reply to listerines]

Hi Listerines and thanks for replying. Regarding the delay in taking the Flec, I assume it’s to allow me to take blood thinners for minimum 4 weeks in case the Flec puts me back into NSR and dislodges a blood clot? Other than that I don’t know. All of this has been discussed by email/phone with the nurses. I did ask for a face to face appointment but I got the covid related response of reduced service etc and no face to face appointments for months which would delay any treatment.

[listerines in reply to Paul5851]

Hi Paul5851, I suppose it is possible that they want you to wait on the flecainide for mutiple weeks due to clot concerns, but gotta say never heard of that approach before. My thought would be to try and get you back into NSR as soon as possible which would mean starting the flecainde sooner rather than later. I am no health professional just an afib patient like you, but might be a good idea to clarify with your health care team regarding starting the antiarrhythmic (flecainide) now versus 3-4 weeks from now (especially if you have challenging afib episodes).

Hopefully heart stability will find you soon.

Keep safe

[Camille777]

I just lurk on this website & grin because treatment of AF in the US is so different than in the UK. My doctors have never even used the term ablation. Also I never knew heavy exercise was involved with AF. You are so much more educated than the typical AF patient here. But to add my personal journey, I just had cardioversion this past Wed. I went quickly into NSR. I was told to continue blood thinner & beta blocker until I'm seen in 3 weeks. But I also developed heart failure from AF within a year after being diagnosed. So I think my after care treatment is because of that. As everyone says, we are all different, but you are way more educated in the UK. Can you tell I don't think much of our system?

[nmack in reply to Camille777]

Hi. I think it depends on the cardiologist, hospital or health system you are involved with. I live in California and was offered an ablation 6 months after diagnosis and 2 failed cardioversions. Two years later they are still recommending one because I'm fairly persistent now but still mostly asymptomatic. I believe their goal is to lower the risk of future stroke and heart failure from my persistent afib and to maintain a good QOL. This site, the administrators and awesome volunteers like BobD and FlapJack are so knowledgeable and helpful that it's difficult to find any comparable site. I'm happy I found this forum. Thanks.

[Camille777 in reply to nmack]

You had 2 cardioversions within 6 months after the diagnosis? I guess it also has to do with a person's condition. I had no conditions that preclude AF & my BP is low + even though it was jumping around, my HR is also low. I guess they thought they could control my AF with drugs. But no one even mentioned Ablation.

[Paul5851]

Hi Camille and thanks for replying. I guess the level of treatment in the US is more of a money game than here? I assume if you have the resources you can choose your EP and cardiologist- a bit like the private health care here? How old are you may I ask? And was Afib the sole contributor to your heart failure? As for exercise and Afib I’m not sure that heavy exercise in and of itself causes Afib but if your heart is more prone to Afib then you can easily join the dots and see how the heavier burden can cause it. One thing that I find frustrating is that the medical profession don’t seem too concerned in identifying the causes in otherwise healthy people.

[Camille777 in reply to Paul5851]

Every big city in my state is known for excellent healthcare - not so much to the regular Joe. I had no pre-existing conditions for getting AFib - definitely not too much exercise. I'm on my 2nd cardiologist & they still don't know why. The only thing they have said is I had a slightly enlarged heart which could be genetic & that is often associated with AFib. Now that they have damaged my heart I'm sure my heart is more enlarged. I've had to take my recovery into my own hands & advocate for myself. Heart failure can be reversed & now that I'm in NSR & don't know for how long, I'm going to do everything to get my heart pumping again.

[Jajarunner]

Hi Paul

I'm very like you in that I was fit, healthy weight and healthy diet. My electrocardiologist says exercise is only to blame in real extreme cases like tour de france cyclists doing very high intensities for years and years. You might like to read a synopsis of about 30 studies which I published. I'll send you the link.

I hope your cv works and flecainide keeps you in rhythm, it worked for me for several years before I needed an ablation. Best wishes

[Hidden in reply to Jajarunner]

Please don't hesitate to contact AF Association for support & information should you need it: [e-mail] / 01789 867 502

[Jajarunner]

hhtafibathlete.blogspot.com...

[Paul5851 in reply to Jajarunner]

Hi again Jaja. I’ve just read your ablation and post ablation blog entries from last year. Could I ask how you’re doing now?

[Jajarunner in reply to Paul5851]

The flu jab set off af in September and then I had af again three weeks later. So another two cardioversions. Now awaiting a third ablation unfortunately... And there's a six month wait this time!!! So I'm in nsr but in limbo waiting to go back into af at any time which means hospital and a cardioversion as I don't self revert and have ,"fast Afib".

Sorry it's not more cheerful. But everyone is different. Flec worked for four years on me. There are also drugs like verapamil which can work well (but not for me since it made me go unconscious!!!) But lots of sporty types do well with that.

[Paul5851 in reply to Jajarunner]

Well hopefully in six months your next ablation will sort things out again. As you rightly point out, everyone is different.

[Jajarunner in reply to Paul5851]

Thank you. Fingers crossed

[Jajarunner]

Me again. You might also like to check out the cardiac athletes Facebook page. Mainly more serious heart disorders but a few Afibbers too. Nice supportive, inspiring page...

[Paul5851 in reply to Jajarunner]

Ah thanks for those links Jaja. It’s those kind of testimonies from others that lift the gloom a bit with this annoying thing!

[Zeinmassri]

I would rather not argue with an atheist but whether you believe it or not I truely believe god is the most merciful and he’s in control and I surrender to him and just so you know I’ve had family member who still suffer from terminal illness , my mom battle cancer for years and I I myself lost my job pretty much bed ridden because of my heart condition and I also have had 4 uncles pass away but I’m still a firm believer and will always be

[gwyn53]

I started flecanide last Saturday with 2.5 bisoplolol I am hopefully tomorrow monday 8 th Nov having ecg.

Because since starting thinners I've gone into a perm afib.

Gutted and extremely worried

I spoke with a Friday he couldn't get his head around why I would go from sotalol to flecanide.

Sometimes I wonder if these consultants know what they are doing?

[Hidden in reply to gwyn53]

Please don't hesitate to contact AF Association for support & information should you need it: [e-mail] / 01789 867 502

[EngMac]

I have not been on the forum much lately so someone may have mentioned the real cause of AF is still not known. It seems more younger people are getting it. Some chiropractors think the nerve signals from the brain to the heart and vice versa are compromised. This could be the reason more young people are getting AF; and, of course, the reason older people get it. Most people spend hours a day bent over phones and devices. This is very negative for the neck and back. Ideal posture is necessary for optimal health. Unfortunately, doctors who suggest treatment for the heart never consider or check if nerves from the brain to the heart are a factor for a patient and thus this is never eliminated..

[Hidden]

Please don't hesitate to contact AF Association for support & information should you need it: [e-mail] / 01789 867 502