Ablation or continued Flec

I have had vagal PAF for many years I am 54 and other wise fit and healthy. and managed to control it without drugs except very occasional flecainide until about 6 months ago when the events became so frequent that i decided to start taking flec continuously. I take 100 mg twice a day and that controls my rhythm most of the time. Sometimes is goes out of rhythm at night or I wake up in AF but this soon clears,

When in AF i still function fine though i feel anxious and edgy I am still physically capable.

I have now come to the top of the waiting list for an ablation and cant decide whether its really worthwhile when the flec is doing the job.

I dont really notice any significant side effects from the flecainde to hough taking such a powerful drug long term does give me some concern.

I am also concerned about the ablation ablation procedure and worst of all finding myself damaged as a result.

The thought of a drug free future is very appealing but is it worth the risk when I seem to tolerate flecainide which brings everything undercontrol.

I also wonder whither future ablation procedures or bio tech solutions might be worth waiting for.

Thoughts welcome.

45 Replies

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  • Hello Ben

    I have just undergone my ablation (17th feb) my choice was pretty much only choice as meds never really controlled my symptons.

    Diagnosed March14 with PAF, I too was happy to continue as is as up until October14 my symptoms were under control and not really impacting on my day to day life.

    All changed though, once symptoms got worse attempts at various meds from then though to new year never really got things under control.

    It was only when I stopped taking Flecainide, stopped exercising, no more alcohol change to diet ( not a weight loss one) and took two weeks off work that I managed to get things under control again.

    In between my ablation date came up which I had no hesitatation in accepting.

    All done now, procedure really was a doddle, had a bit of scare couple of days later, nothing serious and recovering and so far so good, but one can never tempt fate with AF.

    Good luck in your decision

    Rgds

    Mick

  • Your situation is more stark than mine , in your circumstances I too would ablate.

  • Just three months of being stark was enough for me, but as you point out Ben your QOL does not seem to have been impacted over quite a time, you must be one of the lucky ones I suppose.

    Also my EP was very pro ablation, when he took all my factors into consideration.

  • Everybody knows my view. Ablation. Even if you need two or three is better than a lifetime of drugs and AF will get worse over time. Even if you only get 7 or 10 years that is a lot of drug free time.

    Bob

  • Bob do we really stay drug free even if an ablation is a success.

    Read many posts where people despite positive ablation appear to be on some form of med, whether that be rate, rhythm, or anti coagulant.

  • Mick, I take atenolol and losartan for high blood pressure. I score on the CHADS thingy so I take warfarin to please other people (I loathe it and everything to do with it) but since my ablation I have been able to give up flecainide, so am not far off drug free.

  • I see, well I am lone AFib so if ablation stays positive then perhaps there is a chance of being òff the meds, been left on 2.5mg Bisoprolol and Rivaroxaban since ablation on advise from EP.

  • Sounds hopeful! You're younger than many of us - that life changing 65th birthday!

  • Anticoagulant yes I take warfarin but my choice. Me EP told me I could stop six years ago. Load of meds but nothing for AF as I don;t have it these days.

  • If it were me, I'd go for the ablation if the EP thinks that's the best route. My ablation was a total success and kept me AF and drug-free for 8 years. Now back on drugs and they are working, but, reading the list of possible long-term side-effects, even though I can't feel anything, I would like to be off them as soon as possible.

    I've had to be anti-coagulated throughout though, and probably for life I guess, so not totally drug free.

    It's good you have options. Both seem pretty good really :-) . You could flip a coin (only joking).

    Koll

  • I find the doctors advice confusing some say ablate others say dont

  • I was diagnosed in Feb 2013. I had episodes 3/4 time a week lasting 6-10 hours. My ep gave me a choice of meds or ablation. After lots of consideration, lots of input from members on this site and EP staying fairly neutral but i felt he was of the opinion better sooner than later. I opted for ablation and had it done in November 2013. I was very nervous but all went well. I now am a thousand times better and although may need another one I will happily have it rather than a lifetime of meds. I know its as difficult choice so good luck.

  • I regret letting things slide and not telling my GP I was having AF increasingly often. As a result I didn't have an ablation as soon as I might have done and it was a mistake as I spent 8 months taking 300mgs of flecainide per day and I wish I had not done so.

  • My situation is similar to yours and I may need to go through the same decision process in the future so I am very interested in what you eventually decide.

    I was diagnosed with PAF last year although I have probably had it for 2/3 years. I am taking flecainide and bisoprolol (but I would prefer not to be taking these). My response has been to change my life style, diet and attitude which I believe has helped a lot. I have relatively few symptons so I just get on with life.

    Everything I read suggests that AF will always get worse but until I decide that for myself through personal experience I am not yet ready to accept this.

    I read that there is no cure for AF, just prevention. The same article suggested that the rogue electrical signals beat a new pathway and these get worn down more and more with each episode to the point where they can't be repaired. I guess that if AF episodes continue and get worse then an ablation becomes more and more likely.

    There are some strong supporters for ablation on this website but I have also read a lot of negative comment about problems experienced so I am not finding things to be clearcut. I am also mindful that technology is advancing all the time.

    I have not yet seen an EP but I suspect, if I do, I will be steered towards an ablation (because that is what they do - don't they?).

    So my decision is not to seek an ablation yet (and hopefully not for a long time), but only if things don' t deteriorate.

    Hope this helps a little and the best of luck with whatever you decide.

  • how much flec do you take? My natural inclination is to wait but the attraction of being drug free is strong as well.

  • I am taking 100mg twice daily.

    Also taking 1.25mg bisoprolol and 20mg rivaroxaban daily.

  • Forgot to mention. I am 64 years old and, apart from AF, I am relatively fit and healthy.

  • Only 64? Why do you have the symbol of the 99 year old geezer? You are young! (Same age as me.). M

  • AF has a lot to answer for!

  • Craggy, my situation is quite similar to yours. I was diagnosed PAF about 1 and 1/2 years ago. Ablation has been always an option but I still can manage the light symptoms without meds and I am not be really convinced by all information I read what is the best way ahead. So, thanks to all of you who share your experiences.

  • You need to consider that the fibrillation may well be damaging your heart. You may be fibrillating more than you realise ( I was ). You are relatively young and long term-term drug taking will have its effect.

    I promise you that there are thousands of procedures worse than ablation.

  • I was in much the same place as you.flecanide was working and E.P. advised sticking with meds. After a year I had to increase the flecanide ultimately to 150 mg twice a day as I was having lots of breakthrough A.F. this gave me visual disturbances so the decision to have ablation was made for me. I was surprised how quickly the original dose stopped work I g for me. I know some people have had A.F. controlled for many years with flecanide. The ablation procedure was no problem for me and I have recovered well. X

  • Hi - you write in your post about visual disturbance. Could I ask is that like migraine type visual, or other stuff? Regards M.

  • Hi. No not like migraine. I had trouble focussing when going from dark to bright light and vice versa . Also under the same conditions I could see multiples of the vs in the periphery f my vision so if I was walking through a doorway I could see multiple florists on either side. This didn't happen unless there was a dramatic change of light .As soon as I slightly reduced the dose it stopped happening but I was scared it may be damaging my eyes. Although it is highly unlikely my E.P. said he couldn't rule it out. X

  • Not florists but door posts !

  • Ha ha. The idea of seeing florists is more interesting! Prescriptive text is a pain. XM

  • Ben, I'm a decade or so older than you and have had PAF for about 5 years, diagnosed 14 months ago, but I have the same thoughts regarding drugs/ablation. At the moment I am 'happy' on Flecainide which is controlling symptoms but mindful of the implications of taking a powerful drug over many years (I hope).

    I have had 2 cardiologists tell me perhaps to consider SVT ablation but to wait with AF as the success rates are lower than with SVT. So far, I have seen the EP only once, so it hasn't been discussed, only mentioned.

    For me there are issues with ablation:

    It may leave me worse off than now

    It will scar my heart - is that what I want?

    It may take more than one procedure

    The percentages for success rates for AF don't attract me

    The drugs are working at the moment

    BUT it may work and leave me drug and AF free.

    It has to be a personal decision made with the advice of the physicians we trust, based on our own needs and quality of life - and it is difficult. Many people on this site have great quality of life after ablation and many with drug therapy. In a recent thread Happyjo wrote a wonderful post which I copied into my journal. I hope she doesn't mind that I quote part of it, as it sums up my thoughts perfectly:

    ' . . . err on the side of caution for non-reversible treatments for non-life threatening conditions . . . '

    Whilst the drugs work for me, I won't consider ablation but will seek the least intervention (drug or otherwise) that gives me the quality of life I want.

    I wish you well in whatever decision you come to.

    Finvola

  • thanks , those thoughts are very similar to my own.

  • I am in the same quandary although 9 years older. I had a right atiram ablation for flutter which was 100% successful. I am fit ( in the old sense of the word) and using flecainade, bisoprolol and apixaban. Do I want scarring and a hole in my heart which in my case started the whole AF thing. If I was not coping I would be after an AF ablation.

  • The EP I saw has AF and he said he would not have an ablation himself even though he does several a week.

    I am on Flec and don't get any symptoms at all and my GP wanted to take me off meds but i was a little nervous so carried on.

  • That was what my last consultant said as well when I asked if he would have an ablation himself.

  • Chris, did he give a reason? The EP, that is.

  • no, my GP just said look them in the eye and ask if they would have it done, i did and he said no.

  • I hadt ablation in Dec and was taken off all meds immediately. I had 2 bouts of AF in the first couple of weeks which righted themselves within in a couple of hours. Since then I have the occasional ectopic strangely enough following a meal if I am wearing a tight waistband. Oh I'm waffling on, I was like you preferring to stay on meds but then I had to increase them which worried me so I opted for a cryo ablation, not an easy decision by any means but I'm glad I did. If it became necessary I would have another. I don't like taking drugs. Good luck x

  • I had a similar decision to make Ben. AF is progressive and whatever your condition is today, you would be a very lucky fellow indeed if it didn't deteriorate in the months and years ahead. While the flecainide may be doing its thing now and the status quo may seem the most attractive option vis a vis ablation today - what happens when that lets you down, which it almost certainly will? You'll be that much further down the line and you could be in or heading towards permanent AF which might make ablation more difficult.

    On the other hand - that much further down the line, ablations might be simpler and much more effective or they might have found a permanent cure.... which only works on people who haven't had ablations.

    Decisions, decisions.....

    I've decided on an ablation by the way.

  • Ben, the comments above about possible future improvements in ablation and risks are factors I think are important- the other two things are 1. working out if your symptoms are bad enough to warrant the risk- many consultants I have talked to put this first when weighing up options. 2, looking at diet and lifestyle Our medical lead ( surrey asg) gave a good talk recently (link is on website surreyasg), and in one African study Af was in a minute % of the population- the people had very low BMI- around 18 and had a plant based diet The other study he spoke of was from the US where obese patients reduced the incidence , and severity ,dramatically, of their AF by dieting and lifestyle changes

    I have vagal AF and have found that by increasing Potassium in my diet ( which was below range on the occasions when my AF was bad enough to warrant A and E) and making sure I have enough Magnesium, the episodes have stopped ( at least for the present- this is since April 2014 and previously 2 months was the longest period without AF)

    Lastly, I attended my 6 monthly appointment at the Brompton this week and saw a different Doctor. I explained I was pleased I hadn't taken the ablation option as had thought I wasn't symptomatic enough at the time it was offered , and have been OK since april. She said she wouldn't have offered it at that point but would have suggested Flecanide on a daily basis first.

    We are all different and you are a lot younger than me which needs to be factored in.!!

    Good luck.

  • Hi Ben, in my mind it's not ablation or drugs it's both and lifestyle changes.

    I have been on the same Flecainide dose for 12 months, no episodes and no side effects.

    However, I have been furiously changing lifestyle issues e.g. less stress, relaxation techniques, better food (incl 90% gluten free, less sugar, more walking, improving gut/digestion, supplements and dental work).

    My cardiologist (seeing him again today) said last October I could reduce my Flecainide to 50mg three time a day but have postponed this until all matters relating to the Vagal Nerve (i.e. Mind and Stomach) are fixed. Desperate to reduce the drug but not rushing it.

    Lastly, I quite accept that I will have an ablation in the next 10 years but hopefully at a higher success rate than the 70% the EP quoted and not only that my body generally should be a lot healthier to cope.

  • That's interesting - I would love to be able to reduce Flecainide from 200 to 150mg daily. Would you let us know how you get on with the reduced dose? I too have taken all the advice about diet and exercise - just bought an exercise bike!

  • Yes Finvola. I haven't got a start date and confess to be nervous about any drug reduction.

    On exercise, my personal feeling is walking is the best for AFibbers and other stuff like diabetes. Being a sporty 61yo walking has never thrilled me but I use Nordic Poles which seems to turn it more into a sport (keen on Nordic skiing) and also have a great Nature track near our house.

  • I love to walk too. We live on a remote mountainside which is wonderful for hiking but this winter has been the pits for wind, sleet and rain - hence the bike to reduce frustration. Like the sound of your nature trail!

  • Hi

    No he just he wouldn't have one. I believe he is a very good EP at Bristol

  • I was in exactly the same position as you Ben. I was even debating whether I should be going in for it last Monday morning when I was in my gown awaiting the ablation. However, I've had it done, but time will tell if it was the right decision. My apprehension was being 43, I dont know how many ablations I will need or indeed how many I can have until they can do no more. The procedure was straight forward and I feel great at the moment, so fingers crossed it may last.

  • Decided not to this time but expect I will opt to have one in the future.

  • I suffered with Lone AF for 8 years taking flecainide for all that time. Over time the flecainide dosage had to be increased as the AF episodes intensified. I began to suffer from peripheral neuropathy in my feet and lower legs then into my hands and lastly in my face. After numerous tests ,bloods, nerve conduction study and MRI no reason could be found. However I had a sneaking feeling that it was the flecainide and started to cut the dose down . The symptoms eased but my AF became intolerable with around 50% of time in AF. I was put on propafenone as a stop gap prior to being ablated. ( I considered the ablation as the final step).

    I wish I had chosen earlier. The procedure took 5 hours and after 3 months was down to pill in pocket propafenone. I still get short episodes and have had to take around 5 tablets in the last 6 months. The ablation route for me, in retrospect was a no brainer.

    I no longer carry the mental burden of AF and enjoy my life so much more than pre ablation.

  • Thats exactly what I fear about Flecainide! What dose were you taking? At the moment I manage on 150 mg a day and whilst at that level I can't really feel any side effects at all, though I do occasionally get visual disturbances.

    The mental burden seems to come and go depending on my state of mind more generally

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