Persistent AF

[cicek]

I have suffered with PAF for years and was offered an ablation 6 years ago. I didn't think my symptoms were bad enough to justify this and I managed quite well with Bisoprolol. However, I have now gone into what I think is persistent AF and have just had a telephone call from the cardiologist (which should have been this Friday morning so I wasn't prepared!). He is organising a thyroid test, a 24 hour monitor and an ECG. All this sounds just what I was expecting. If everything is fine and they confirm persistent AF he will do a cardioversion. He has also prescribed Flecainide. Does anyone have any comments regarding this medication. Apparently I have to stay on Bisoprolol as well but on a reduced dose. Thanks for any help.

[BobD Volunteer]

Maybe time to re-consider that ablation before it is too late?

[cicek in reply to BobD]

Thanks Bob. Because I have been feeling well I thought it best to take the change in medication route first. Anyway, the EP said it is at least a one year wait at the moment because of Covid so I guess the medication change may help anyway. Thanks for your response but what do you mean "before it's too late".

[cuore in reply to cicek]

Once you become persistent the atria quickly remodel and become fibrotic. If you are persistent for six months there are up to four rogue areas beyond the pulmonary veins that have to be ablated, then up to a year of persistent AF, a total of seven. "AF begets AF." The more you have, the more you will get. In my case, had I not had an ablation at the six month persistent stage, I never would have been able to return to sinus. I have an extensively remodelled heart with extensive ablation. To remain in sinus, I still have to take a drug --Propafenone --even though I have had three ablations. All this damage could have been avoided had I had an ablation at the paroxysmal stage.

For good results, one must have the ablation at the paroxysmal stage, not persistent that require more than one ablation and even staying on drugs.

[cicek in reply to cuore]

Oh dear none of this sounds good. I think I have been in persistent AF for longer than 6 months. I wish this had all been explained to me by the specialists. Definitely will ring them and ask these questions. Thank you.

[cuore in reply to cicek]

If you have been persistent for longer than 6 months, time is not on your side. Yes, get to see your EP as soon as possible and good luck to you.

[cicek in reply to cuore]

I think getting to see him will be difficulty! I've had one telephone conversation cancelled and finally had a conversation with him on the phone. Not likely to be seeing anyone only to get my ECG and 24 hour monitor. Not seen anyone at all since all this started. Sign of the times.

[BobD Volunteer in reply to cicek]

AF begets AF so the more you have the more you will get. Once it becomes permanently established the chance of ablation stopping it drastically reduces .

[cicek in reply to BobD]

Thanks for that BobD. The EP never mentioned that. He said he thought I was making the right decision! I now wonder right decision for who. I'll wait until the ECG and 24 hour monitor results. Not heard of anyone having a Cardioversion when they have not been in extremely fast prolonged before. It's all a minefield to me. My sister has had two ablations but been told she will have to be paced next time. It sounds like I do need much more advice than I have been given. Couldn't see my doctor and could only get phone appointment with EP. I think face to face is much better but I do understand the difficulty at the moment.

[CDreamer in reply to cicek]

Get on the waiting list - you can make a final decision when appt offered. If you wait, then go on waiting list you could be another 2 years down the line.

Always good to do your research thoroughly- including success rate of EP! Get the best you can, even if you need to travel.

[pottypete1]

Flecainide is a very regularly used anti arrhythmia medication.

I have been taking it for over 30 years and although I also have had a number of ablations, I believe I would have had a far worse time if I had not been taking Flecainide.

Pete

[cicek in reply to pottypete1]

Thank you for your response.

[rosyG]

Flecanide is much safer with a beta blocker so sounds good.

[cicek in reply to rosyG]

Thank you. I hope it works.

[jeanjeannie50]

For me Flecainide has been the only drug that has ever helped calm my AF. I would recommend it 100%.

[cicek in reply to jeanjeannie50]

Thank you. I've been so well on Bisopolol for so many years I'm dreading the change!

[rof182]

I am suffering from temporary AF, however episodes have reduced a lot since I have started taking Flecainide. I also did the usual life style changes (no drinks, exercise, losing weight) so at least the package has had an impact.

[Hidden]

Did the change from PAF to persistent occur gradually over several years or did it occur within a few months? I agree with Bob that you should consider an ablation.

[TracyAdmin Partner]

If you would like some advice please do not hesitate to contact the Patients Services team at the A F Association via [e-mail] or call our helpline 01789 867 502. Alternatively, you may find some of our Patient Information booklets helpful heartrhythmalliance.org/afa.

[cicek in reply to TracyAdmin]

Thank you so much. I have now sent an email to the Patient Services Team.

[Snookersteve]

Hi cicek, there is a link here to a 19 minute 2016 video by the excellent Dr Sanjay Gupta relating to the topic of whether or not to have an ablation. Hope you find this of interest youtube.com/watch?v=3VOq9BL...(Not working as expected?) Steve

[cicek in reply to Snookersteve]

Thank you very much for this. It was very informative and nice that someone has taken the time to produce this video. All things considered, it sounds like Dr Gupta would not advise me to have an ablation due to having AF for a long time and it now being persistent. I wish I had seen this video in 2015 when I was in PAF and offered an ablation but nothing like this was mentioned to me. I guess hindsight is always best but hopefully all the newly diagnosed PAF patients will get an ablation quickly and it will be more successful.

[Snookersteve in reply to cicek]

If it was me I wouldn't make any decisions one way or another yet re a possible future ablation. I was in persistent/permanent AF for over 9 months and then had a cardioversion preceded by taking flecainide (no side effects) for 2 weeks before the cardioversion and luckily went into sinus rhythm (SR) at the first attempt. If your tests come back ok and your heart is generally in good shape then the flecainide (together with the bisoprolol) and cardioversion are definitely worth a try. If that works and you are back in SR then that means you are probably a good candidate for an ablation if you decide to go down that route. If you have only had paroxysmal AF until recently then your heart probably hasn't suffered much (if any) damage due to AF as by definition your heart has been in SR for the vast majority of the time during the last 6 years . Many people manage to keep in SR by taking an ongoing maintenance dose of flecainide and for others an ablation(s) are needed. AF affects everyone in different ways and what works for one doesn't work for others so try to remain positive.

It really is worthwhile looking at lifestyle factors to see if you can improve your general health and heart health eg do you need to lose weight, try to cut down on alcohol, try to keep fit, can you improve your diet, do you have high BP if so is it well controlled? You may of course already be on top of all these factors. Best Wishes Steve

[cicek in reply to Snookersteve]

I've taken that all on board thanks and I fully understand where you are coming from. My health is good. I am overweight but not greatly. I don't drink. I walk at least 6km every day but I do eat a lot of the wrong food - especially during lockdown. Of course I could always be a lot healthier and slimmer and I am trying to do that.

[wilsond]

Similar story to me. Definetly take the Bisoprolol with the flecanide as there can be problems without it.Flecanide works well for me ,first took as PIP approach then daily maintainance dose.

Has kept me in sinus very well, except for some breakthrough episodes where the Crazy Heart had a long party . Few if any effects.

Hope it is effective for you

[cicek in reply to wilsond]

Thank you for your response. I guess everyone has different side effects and I am trying not to even think about that aspect of it at the moment.

[Snowgirl65]

Flecainide worked well for my a-fib for a few years. However, it caused vision disturbances which I feel eventually led to having cataract surgery on both eyes. My ophthalmologist was surprised given my young-ish age at the time, and that they came on suddenly. Flecainide also caused me to gain weight. When I went off them, I suddenly shed 23 lbs. But don't just take my comments on this, as many others have no side-effects whatsoever with flecainide. Good luck to you.

[cicek in reply to Snowgirl65]

Thank you. After a year of lockdown I certainly don't need to put any more weight on😂. I am just grateful for all the comments on here which will help me along my next path.

[captainKFF]

Hi Cicek, may I ask what was your heart rate when you were in paroxysmal Afib? And what is it now while you’re in persistent Afib?

[cicek in reply to captainKFF]

My normal HR in PAF was quite low. Always between around 48 and 56. It never went any higher than around 120 bpm when in afib. Now I'm lucky if it ever goes below 80, even into the low 100s even when resting. Sometimes when I'm out walking it can go up to 160 bpm. Never consistent obviously. Bouncing around all the time.

[Dee5165]

I had Cardioversion and it only lasted two weeks. I would do it again if the natural route does not work.

[cicek in reply to Dee5165]

Thanks. Hope you are OK now. Did you have a GA for your cardioversion?

[Dee5165 in reply to cicek]

What is a GA?

[cicek in reply to Dee5165]

Sorry. General Anaesthetic.

[Dee5165 in reply to cicek]

Yes. I was put under 2 times. Once for Endoscopy checking down throat for blood clots then for Cardioversion. I am reducing beta blocker dosage now and replacing with Magnesium, Hawthorn Berry and Alaskan Wild Salmon Oil. I’ll know if it works within 6 weeks otherwise I’ll schedule another Cardioversion. Good luck to you.