AF more frequent

Hi guys, i have Lone PAF.

Saw EP at end of January, i had had 3 episodes over the year and was happy with pill in he pocket 2.5 mg bisoprosol and 300 Flecainide.

Since the beginning of March i have had episodes every 10 days and the latest one was last night about 60 hours since the last.

All reverted with pip one took 15 hours and the others reverted in a few hours.

I am thinking of what to do next, i am in sinus so that is good.

Frustrated at increased frequency.

Wondering if the flecaninde is potentially making things worse.

Just confused and agitated.

I have no other underlying conditions which i am extremely grateful for.

Thoughts?

Thanks all.

Of to see the cardio to get an opinion.

A

51 Replies

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  • Sorry to hear this but it is what AF tends to do.

    Do you take anything on a daily basis?

  • Nothing apart from vitamins

  • Well, there are choices, and many follow the route that CDreamer describes. On the other hand, you could be pointed in the direction of an early ablation.

    Like CD I regret taking daily flecainide for as long as I did. It is a powerful drug, though, and can work very well.

    Do let us know what advice you get and what you decide to do.

  • Correction now have started on 1.25mg of bisoprolo and 50 mg of Flecainide

  • Those are quite low doses. Is it 50mgs of flecainide twice a day? Some people take 10mgs of bisoprolol and 150mgs x 2 of flec. Flecainide is best taken on an empty stomach / an hour before food.

  • Hi Rellim thank you for responding. 50mgs twice a day.

    I am thankful that my episodes at the moment do not appear with tachycardia, only with arythmia and a HRate of between 60 -90.

    The cardiologist suggested I go on the meds now, i guess to slow things down a bit and give us time to review.

    Will also give me time to go back to the EP who put me on pill in the pocket and get his view.

    Thanks for the advice re: Flecainide.

    Also am i right to say that Flecainide is best taken with bisoprolol?

  • I think lots of people take it with Bisoprolol but whether that's taking the two at the same time I don't know. I took flecainide first thing in the morning and at about 6.30 in the evening and I take atenolol at bedtime. I gave flec a go at 11 morning and night for a while but preferred the earlier timing.

  • Rellim296 can i assume that you have had an ablation? If so what was the outcome and are you on meds etc. Thank you

  • I have had three ablations. Started with palpitations in 1990 when I was about 43 and was fairly OK with them for about 20 years, Had the first ablation in 2011 and it was found that I had AF not tachycardia (nothing on ECGs although I had a 7 day one). Started on flecainide on the day of the first ablation and was fine for a while but had a second one in 2014. I was able to give up flecainide after that. I still get AF occasionally. Had a third ablation in 2015. If I had not had the ablations I'd be full of drugs by now and probably in permanent AF. I take atenolol and losartan (both for blood pressure control) and Rivaroxaban. Nothing else. Not displeased with the way things are though it would be nice to be AF free. It doesn't incapacitate me much though and I go for weeks without it.

  • I had the same result, PIP worked for some time, but AF episodes became more frequent - because that is what AF does. The next step for me was taking a daily dose of 200mg with an extra 100mg in hand if I went into episode. That held episodes at bay for a few more months, then that failed plus I hated taking Flec on a daily basis.

    Next step - ablation and that worked after second. No AF for 3 years but I have had a few episodes in the last few months but not nearly as symptomatic nor do they last for very long - a few hours. I am not on any drugs other than anti-coagulant.

    Next step would probably be another ablation - but that would be complicated for me now due to another condition.

    Has ablation been mentioned? Is your cardiologist an EP? Have you tried lifestyle options? Have you been screened/treated for sleep apnea?

    In hindsight, if I knew what I knew now when at your stage, I would try to have done everything I could do other than go down the drug route.

    Best wishes CD

  • Good answer above as usual. It is important to understand that AF is a progressive condition. This is never a case of "getting used to drugs" or "drugs not working any more" but of the condition creating new pathways so new opportunities for the fibrillation to get going.

    Far better to see an EP and discuss ablation now before it really gets established.

  • Hi Bob's, question for you, afib begets afib get the expression. How much do you think the mind has influence over this, as we all know the mind plays havoc when having these conditions.

    I am surprised people aren't offered therapy or psychotherapy to help ease this and may help with the condition. Thoughts?

  • Well cardio has put me on 1.25 of bisoprosol and 50 mg flecaninde. With a view of taking more flecaninde when required.

    Plan on seeing EP again to get his view.

    Was thinking of trying to avoid an ablation until trchnology / science is more mature.

    I am 46 so think that it may be early to start burning away at a normal heart, so a little torn.

  • Understandable, but it will be interesting to hear your EP's view.

  • Understandable caution but needs to be balanced against is possibility of leaving it as the outcomes of ablation on progressive AF decline quite drastically, quite quickly.

  • I forgot to add that it comes on gently like a tiggling effect (without the laughter). Not really tachycardic either now just out of rythm.

    And also cardiologist mentioned gall bladder removal as i have a stone in the gall bladder that might potentially trigger afib. At some point it will have to be removed.

  • "...it may be early to start burning away at a normal heart" But it's not a normal heart Andy - at least, it's not functioning normally. It has an ongoing problem with its electrics and, for the foreseeable future, the only route to putting that right is ablation therapy, be that one or more procedures. No amount of medicines (or magnesium) will put things right. It's been said - AF is progressive and the door to that beautiful freedom is, month by month, slowly closing - so don't wait too long.

    And the "I'm only 46" argument doesn't stack up. The 80+ year old could say "I'll put up with it for the time I have left" but you....you've got half a lifetime ahead of you! The thought of that many years with AF would have me begging an EP to take it away......

  • Nicely put☺ just not sure about short term fixes which sounds like what an ablation is, but it appears the only fix at present

  • Hi Andy, firstly fully appreciate the good news that you are LONE af i.e. nothing structurally wrong and some time on your side to look at all options. As my situation was very similar to yours back in 2008, may I suggest the following:

    My first visit would be to an experienced Alternative Practitioner. I was put on Nutri MegaMag Muscleze (check out not just the Mg in there but all the other quality heart/general contents) and CoQ10 together with levels tested after 6 months as both started very low.

    Second, you don't mention if you have identified any AF triggers, but if it is vagally mediated like mine, make a lot of lifestyle changes e.g. lower stress, better diet (big reduction in gluten & sugar, more water, no processed supermarket 'food')) & regular gentle exercise.

    Thirdly,I was started on 100mgs Flecainide per day (I know nothing about Bisoprosol) and after a couple of months I hit an AF hotspot of 9 episodes in a month. All the medics shouted ablation but I didn't like the success rates quoted, as by then I had AF very infrequently for a few years previously. Instead, the Flec was put up to 200 mgs/day and with the above mentioned additional measures and avoiding known triggers I haven't had any more episodes now for 3+ years, feel absolutely fine and work a less stressful full week. No obvious side effects from Flec.

    Lastly, interesting that you mention your gall bladder. I had mine removed very efficiently while on holiday in Portugal (it was not planned!) around the time my AF may have began but not recognised then.

    Hope something above helps, good luck.

  • Hi there orchard worker, not sure where u are based, but who was your or is your alternative practitioner.

    I am still not sure if my triggers, but i think a v stressful last 6 years, from bad diet, highly stressed, living between Greece and UK hence not enough time with kids etc... Has resulted in me short circuiting. Had adrenal stress test done, wasn't​ suffering from adrenal burnout but on way if i carry on, also mg level ok.

    Have tried mindfulness which has helped in calming anxiety, but as we all know AF back to back leads to more stress and anxiety.

    Nexts steps, back to mindfulness, begin a yoga practice start running again, maybe remove gallbladder.

    Obviously see EP and discuss what cardio has said as well and get a second EP opinion as mine is great and very sure of himself, but not overly flexible in his approach.

    Thanks

  • Hi Andy

    I am another 'root cause' person waiting for technology to catch up with demand, while I furiously pursue all other options at my disposal.

    That said realistically there can be no entrenched positions either way with AF. As others have said here and medics elsewhere if you have Lone AF, that has not developed for too long and are young i.e. <60 ablation has a much better record.

    Equally, I think medics have said that with Lone AF and no more comorbidities Flecainide is an old tried and tested drug; from posts hear you would be unlucky to develop problems over 5+ years.

    Are you in South East England?

  • Hi Orchard worker thank u. I am in London

  • Thank you, funnily enough you had recommended him on one of my previous posts, am working with him at present, have a follow up appt in 10 or so days.

  • A sign of old age repeating myself and forgetting! Hope it works out.

  • I dont think age has anything to do with it:), i forgot that you had recommended him. Out of interest do you still see him?

  • Yes, but less frequently as no AF for 3+years. Still on his scrip of Nutri MegaMag Muscleze and Lamberts COQ10 with blood tests to check levels every 6 months or so.

  • glad to see, did you say you were on Flecainide as well?

  • Yes and nothing else, a middle dose of 200mgs/day for 3 years.

  • great thank you can i be cheeky and ask age? not that it should make any difference.

  • A very young 63!

  • glad to hear it :)

  • I do have one last question do you or did you have an EP who put you on the Flecainide and if so would you or could you share the name?

  • My cardiologist in Guildford put me on Flecainide. I believe EP's are just focussed on ablation (one medic cautioned me 'if you go and see a carpet salesman you will buy a carpet'). I wasn't impressed with the EP I saw and all I can say is if I need one in the future I will contact Jon Clague at Royal Brompton first.

    Hope it helps.

  • Hi Orchard worker, saw a senior cardiologist who specialises in arythmias etc, he has increased my dose of flec to 100mg in the morning and 100 in the evening. He said 50 mg was low for a man of my size, i am 6 ft 1 and about 89 kg. Not fat. I guess that make sense.

    My question is

    A) what have you been advised if you have an episode i.e pill in picket or other? He said to me that basically i can continue with pill in picket uptown 300mg if required, bearing in mind the 24 hour period rule.

    B) if you have had no episodes in 3 years, has there been no consideration to stop the tablets? Maybe things have settled?

    Thank you😀

  • A) My cardiologist agrees

    B) Yes by me, but waiting until optimum time. My cardio prefers a quiet life & for me to stay at 200mgs and certainly not below 100mgs; but I am convinced there will be a price to pay sooner or later. I expect to start very slowly decreasing the dose probably in 6 months and over 2+ years.

    Very happy to meet, I don't get up to London much but could do Haslemere most Sat mornings at caracoli.co.uk/where-we-are...

  • Hi orchardworker that would be good, I am between countries at the moment, next time I am in London long enough in terms of project work will definitely sort something out sounds good. Thank you

  • Hi. I'm fairly new to AF and at present it isn't causing me too many issues. My cardiologist isn't keen on early ablations. I asked what he'd do if he had afib and he said he would try the drug route first. However, he is supportive should I wish to go down the ablation route. I'm a bit older than you at 61, but Bob's post below has been a bit of a lightbulb moment. Perhaps it is an idea to go for it whilst there is a better chance of success. The more drugs I try, the more I am convinced!

  • Hi Pam, i guess i was hoping to hold out more till the technology progresses. Normally i would say an electrician should put new wiring in not just cut off the old. I am V much a root cause person, but this appears difficult with AF.

  • My EP believed earlier the better. I had ablation as first treatment (took bisoprolol whilst waiting). Ablation was in November 2013 and so far still af free.

  • Hi lallym can i ask your age and if there were any other underlying issues, stress, heart etc.

    Also where did u get it ablation done, what type and by whom please.

    Thank u again

  • Hi. I was 64 at the time. Done by Mark O'Neill in St Thomas in London. If I need another will go back to him. Was very symptomatic and did not like the idea of various drugs so decided to take my chances and so far it has been great. I am able to walk, garden, dance(!) and do normal things for my age. In good form at 68.

    I know you are younger but I would be even more in favour if I was younger - personal opinion only.

  • It's all great feedback thank u lallym. Was Mark ur EP as well?

    Thanks for all the input.

  • Yes

    Difficult decision I know so good luck☘️

  • Ps. No other underlying conditions.

  • Thank u

  • Brilliant!

  • Totally get the wanting to wait for technology to improve argument. For example:

    stanfordhealthcare.org/stan...

  • When I was on Bisoprolol and Flecainide I was having attacks every 2-3 days so changed back to Sotalol.

  • Thanks Claire

  • I was 40 when had my first episode, decided at that age I wanted to try to nip it in the bid before it got too entrenched, I had my ablation with Sabine Ernst at royal Brompton hospital which included a new scan to see if any of the ganglionated plexus were a starter of my af, it's early days yet as had the procedure in oct..... like you.. and many here will tell you... I pondered this for some time wondering if I was doing the right thing...

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