Back to normal ...For now!! x 0 x

Hi all!

Well can not believe how much I have slept, just risen about half an hour ago!!

So in total I took 300mg of Flec and 5mg of Bisoprolol in 24hrs. I remained in AF for 11 hours with a HR of 140 and to be honest I don’t think the tablets helped much as it was just the same as my episodes before the medication.But the good news is I am back to 44bmp!!

So I wasn’t fit enough to travel today and to be honest I had a complete meltdown as I was so upset about the Flec not working and wasn’t fit company for anyone so just stayed in bed all day and slept. But all is not lost; I am going to travel up to Hull tomorrow, meet my other half then plod on to Scarborough. It is my Christmas present to him plus I will lose £100 if I don’t go so bugger worrying about AF – as long as it doesn’t rear it ugly head tomorrow I am determined to go!

So just a couple of questions if anyone can help me….

The Flec and Bisop I am on now didn’t seem to touch the AF last night – May it work if I take it all at once instead of twice daily – I will ask my Doc first to check I am just hoping it may still work taking it in a different way.

If the Flec doesn’t work are there many other combinations of drugs to try before the surgery option, or is this really the end of the line on a medication level.

Finally, I had a Hole in the Heart operation as I child (ASD) which was repaired successfully and my echo showed that I have no structural problems at all – Could this stop me from having an ablation – this is really worrying me!!

Finally thanks to all and sending best wishes for the New Year xxxxxxxx

33 Replies

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  • Try not to worry. What will be will be. I know that is hard to see or accept at the moment.

    Matt Fay will be able to answer some of the questions and some may have to be delayed until you see an EP or further tests are done.

    Happy New Year.

  • Probably not and by the way ablation isn't surgery it is a procedure. Small difference but important as other than the very small entry hole there is no incision. It is also carried out in a catheter laboratory not an operating theatre .

    Since you have obviously failed to respond to drugs one must question continuing to take them but it may be that taking one large dose (300 mg ) of flecainide (no more for 24 hours) might have a better outcome. Best to discuss with Matt when you see him as we can't and shouldn't advise on such matters.. Same about the heart op. Have a good trip.

    Bob

  • Yes Bob, I have so many questions to ask I hope I don't have a 5 minute slot!

    I suppose I have only had one bad episode in nearly 3 weeks so maybe it's doing something ! Happy New Year!! xx

  • How do you stand being in af for 11hours.the longest with me was 6hours when it first started.do you get any chest or lung pains.

    I always know its coming i get very warm in my face and thenthe lung pains.

    When i went to a and e they did not seem bothered about the lung chest pains. They sain if it lasted a long time these pains would go.

    I only wish these medics would warn you what may happen.

    Enjoy scarborough tomorrow

    Rich

  • HI Rich, Sorry for the delay - I promised Andy I wouldn't obsess in Scarborough with AF so this is the first chance I have had to reply properly - although he did catch me on my phone a couple of times!!

    I am lucky in the fact I don't have horrible symptoms with it - just feel really jittery but that's my heart rate at 160bpm I bet - I do feel a bit light headed - but no pain - just scared and miserable and shattered afterwards for at least a day.

    Scarborough was lovely, I did have a mini episode but only for 5 mins or so - I felt like my legs were like jelly and HR was pounding but not gonna obsess on that one! I soon recovered when I saw the donut stand!!

    Happy New Year!! xx

  • Mmmmm so you like donuts. I love eating them at seaside

    Am pleased for you and andy that you enjoyed yourselves in sunny scarborough. Lets hope you get a rest from af i can really understand how you feel.

    Onward and upwards i say lets pray there is a cure for our dicky electrical wiring of our hearts.

    Enjoy your sunday Is it your turn to cook?

    Rich

  • Nooo we don't live together but have been together 10 years - we would last ten minutes if we lived together!!

    Nope now I am abstaining from the pleasures of alcohol my Christmas present to a few friends was afternoon tea at a new patisserie in Bradford-managed to eat my entire body weight in cakes so now need a lie down - Diet starts tomorrow!! x x

  • Wow how well did you do losing lot of weight...I lost 10 stone so I know how hard it is....well done and loads of admiration for what you have achieved....best wishes for 2016...Cheers hic!!!! Roy

  • HI Roy, I had a gastric bypass - still have a bit to lose - thats my 2016 mission - then I shall be left with no enjoyable vices at all! Haha!

    Well done you too - imagine how we would feel if we were still carrying that weight along with the evil AF - it would be horrendous!

    Happy New Year!! xx

  • Bisoprolol doesn't work at all for me, so I take Metoprolol with my Flecainide.

    Jean

  • HI Jean, yes i am gonna have a chat about that too - my hR is 44 bpm on Bispo and makes me feel like a tired slug! I have always had a low HR but the other morning it was 39bpm - thats too low!

    Happy New Year!! xx

  • Hi, you should your Cardioligist re taking regular Flec as a test , I started off as PIP and got too many episodes but when move to regular Flec has worked now for 5 years - worth asking about,

  • HI Dmac. I do have it regular 100x 2 daily and 100mg as PIP. Only had one 11hr episode in 3 weeks on it (300mg in total) so maybe its working - it's horrible waiting and seeing... I want a miracle cure!! Haha

    Happy New Year!! xx

  • Good hope that it continues , mine settled down after a few months on the Flec taken regularly with me not preventing AFIB seemed to let my heart settle down as opposed to taking nothing , AFIB appearing and then taking the PIP - hope its the same for you.

  • Cant advise re the drugs or the ablation, but just to say I am glad you are back in rhythm and hope you have a great time away- even if AF happens while you are away, surely its better to be in a nice place with good company than miserable and worried at home alone! The outcome will probably be the same. :-) x

  • Thanks Angie, Yes thats my thinking too and I did enjoy it - Had a hard word with myself and I need to do more things. I spent 12 years not leaving the house and was just starting to live life before the AF and as hard as it is I am not gonna be a hermit again and you are so right - if it's gonna happen - it will wherever I am, so I may as well have a smile on my face!!

    Happy New Year!! xx

  • Hi booboo,

    Sorry you've been having such a time of it and I hope you stay in SR for a wee while anyway. Like you I'm on bisop and flec 10mg and 50mg twice daily. I was on sotalol for over 20 years which stopped working last year. I'm still "experimenting" with the flecainide alongside the bisoprolol trying to find a combination which suits me best but it is difficult. I have frequent, very symptomatic episodes which can last anywhere between half an hour and 24hrs. I've come to the conclusion that certainly for me there doesn't appear to be a "best" way. I've doubled the amount of flec I take which has helped but it doesn't seem to matter whether or not I take it in two doses of 100mg or four doses of 50mg which I've been trying out for the past couple of weeks. I have accepted now that breakthrough episodes are probably inevitable so I'm concentrating more on management rather than prevention. If I'm in af with a rapid HR I take another 5mg bisop as a first measure to try to control rate, I limit the bisoprolol to no more than 20mg in any 24hr period. If my rate is ok but I'm irregular then I take another flec, like you up to 300mg in 24hrs. Also like you sometimes even the strongest dose doesn't do any good whatsoever and I wonder if the drugs work at all or whether all my episodes would self terminate anyway without drugs. On the whole though I believe that I would be much worse without the drugs although when your in the middle of a particularly stubborn, symptomatic episode that can be hard to believe! The way I look at it is that at the moment I'm more in SR than AF and it's manageable, when however the time ever comes when I'm more in AF then that's when I'll consider the ablation route. Hope you have a good af free new year😀

  • Jimmpy, if you have fast AF and have had episodes for 20+ years then why on earth haven't you gone down the ablation route ?!

    Sandra

  • I've never really thought about it and my cardiologist has only ever mentioned it in passing as a last resort kind of thing. I have to admit I'm in no great rush to have any kind of invasive procedure if I can get some kind of control using drugs. As I mentioned earlier if the time comes when im in AF more than SR I'll be happy to consider it then but I still haven't given up completely in finding a successful drug combination.

  • If I were you I would definitely get a referral to an EP as they know far more about arithmyia and the treatment (ablation OR drugs) than a general cardiologist (ie see the electrician and not the plumber).

    Don't leave it too long because it may then be too late. Sometimes drugs can mask but rouge cells continue and pathways are still created

    Also over 20 years ago it was invasive whereas now it is a catheter ablation. A totally different ball game.

  • BTW as I understand it ablatios have not been a last resort method for years and now can be performed as a first option.

  • I'll certainly investigate this in more detail, I've never really questioned my cardiologists approach but I'm due to see him again at the beginning of Feb. To be honest I'd never even heard of an EP till I came on here and although I've been diagnosed for nearly thirty years it's only in the last year I've had any significant problems, up until then I just took my sotolol and got on with it. I've never been anticoagulated either although I'm given to understand I'm low risk of stroke. I'm certainly not ablation averse it's just never been discussed much.

  • Get referred to an EP and take it from there. If cardiologist won't refer you (some appear not to like to do so -multiple reasons) then get your GP to refer you. Not sure how old you are but seriously consider Anticoagulation. Strokes are not just the Bain of the over 65s!!!!

    Do the CHADSVASC score yourself and read booklets on main AFA site.

  • Will do, thanks for the advice and a happy New Year🎉

  • Thanks for all that info Jim - Yes its awful I hate the waiting and seeing what happens. I am now wondering if the drugs are actually doing anything but I am far too scared to experiment without!! Plus the side effects are not pleasant - i am so tired but its better than AF. I am going to bleat like a spring lamb for an ablation as soon as possible - I really don't want this taking over my life - I just need to educate myself more on AF - I just can't get my head round it!

    Happy New Year!! xx

  • When I was given Met and Flec for persistent AF before ablation, neither worked. Now, 15 months after completely successful ablation, have started mild AF symptoms again, but this time, well controlled with 50mg 2x daily flecainide (I can always feel my AF, as opposed to those who can't tell when they are in AF). The ablation was soooo worth it, not only to be back to my normal activities with no worries and no meds, but because the flecainide, even at such a low dose, makes me drowsy. No wonder you slept so well!

  • Thats great news - I am praying I can get an ablation soon and my heart op as as kid doesn't cause any issues - even if it makes the symptoms milder I will be happy!

    Happy New Year!! xx

  • hi just enjoy your christmas with ur other half or familly dont let AF put u down , iam in AF 24/7 taking atenolol . waiting t see cardia on 20/1/16 . s i just keep going , all what we know AF want kill u if u are in rigth medication , enjoy yur time

  • Hi Karim, how long were you in PAF before progressing to chronic Afib?, also what is your heart rate during the episodes? are you in RVR Afib? also with medication what is your Heart rate? For me the heart rate is the problem.

    I would appreciate the info, by the way I like your attitude.

  • hi captain kff / i been in AF for more than 18 yeras been taking sotalol and warfering , then the cardia out me on aspirin been doing ok , no problemes working going to gym , but 2 month a go haert start playing . been to Aand E , WAS IRREGULER , but they sent me home with it , bet strange to me / seen my gp and put me in atenalol 100g . still playing but as i said i use to it , will see the cardio on 20/1/16 , i dont really know my haert rate. i live with it as it is , hop that will help you bet , happy new year , any thing just ask wa are all in the some boat

  • Thanks Karim - Yes I had a good Christmas but I want next year to be better!!

    Happy New Year!! xx

  • As others have said you have yet to see an expert but I have taken Propafenone for years mostly successfully, and seeing how often your episodes occur I would have thought taking a rhythm control drug regularly would be more effective. I hope you will be offered an ablation asap but in the meantime I wish you a good holiday and a Happy New Year!

  • Thank you Buffafly!

    Yes I feel like my tablets need a good shake up- there is so much I need to learn it's driving me crazy.

    Wishing you a happy and healthy New Year!!

    xxx

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