Paroxysmal afib - drugs or no drugs?

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hi everyone, I'm 61, usually in great health, normal blood pressure, don't smoke, don't drink, slim, sporty. Out the blue diagnosed with PAF. Cardiologist has prescribed flecaine and digoxin at low dose. But want to see if I can manage without - learn the triggers, etc. Any experience out there on one this? I don't want to get caught into drugs which, long term may well do more harm than good! They also only mask, not cure. But maybe I'm being scared for no good reason. Must say that I expected to feel well between episodes (tend to be weekly for about 3-4 hours and always late in the evening, so tiredness definitely one trigger) but I don't. Really just never myself anymore. Maybe taking the medication for, say, three months might just give my heart time to steady itself out of this. Apparently that can sometimes happen. Just don't know. All so new to me I'm very confused. Any tips/advice gratefully received. Thanks everyone. 

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  • Posted

    Jane, sorry to hear this has happened to u. I can relate to just wanting to feel yourself again. If I'm correct, the two drugs he wants u on r are auntiarrhythemic to try to get your hear back into rhthym. I've been on propafanone for the same thing since last November. So far, it still hasn't put my heart back into rhthym.  Does he want u on a blood thinner to because of the risk of stroke?

    Ive been unable to control my episodes and really have no triggers. 

    I wish u good luck. Please keep us posted 

    if u r reluctant to go on the drugs, I would suggest your getting a second opinion. Then if they both agree, u might feel better about starting them. All these drugs can have not so nice side affects, so make sure u check them out so at least u know what u can expect. 

     

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    • Posted

      i have only taken sotalol to control my afib. it has improved but still there. im not feeling 100 percent, but dont feel too bad. changing meds was an option to see if it helped more than sotalol, but it was $500 month compared to $12. i have ablation scheduled but dont really want it. have u tried a lot of different meds?
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    • Posted

      Hi Suzanne, yes the drugs are both antiarrythmics. I would be happy to try the Flec., maybe, but it's the Digoxin that I'm worried about. I've read awful things about it. The cardio said it was important to take the two together, but I can't remember why! Not on anticoagulant of any sort. Apparently these are no longer prescribed to the under 65s with no other problems - risk/benefit ratio not right. Anyway holding on without drugs until I get another opinion. Will keep you all posted and thanks for all your advice and support.
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  • Posted

    Hi Jane. I sound similar to you. Female, 52, non smoker etc. I too had no health issues and dont like meds. I am currently 5 weeks post second ablation. Ive not quite stabilised yet, but fingers crossed. Ive managed to stop verapamil earlier this year, but have to stick with xeralto blood thinners a while yet. My consultant is fully aware and supportive of my aim to be meds free ultimately. I agree re fatigue as a trigger. My episodes used to be 14-24hrs on average. Get all of your tests done and dont make uniformed decisions. Lots of good ideas, advice and personal experiences on this forum. Good luck.
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  • Posted

    Hi Jane

    Tiredness seems the main trigger for mine but it normally starts around 2 am and wakes me. I had good results with flecanide but decided to have ablation in 2011 after being on it for 5 years. It was 98 % success.

    Had unrelated heart attack last year needing a stent and a month after my AF returned but because I had a heart attack I can't have flecanide so awaiting another ablation.

    Other triggers caffine, chocolate

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  • Posted

    All good advice given here. Make sure you do your research before starting on meds. I've had bisoprolol...atenolol...rampril and rivaroxiban. The bisop was replaced with atenolol...both of which caused me to suffer many unpleasant side effects. Neither reduced my pulse rate. I still take the rampril and rivaroxiban. I hope at some point to stop the rampril...my blood pressure is ok . 2 years ago I was prescribed digoxin by the cardiologist at our local hospital. He made no attempt to discuss this with me! He did say that it would be inadvisable to go on holiday to France . When asked why..he said " we understand your problem better". I decided to research the digoxin and decided I wasn't going to take it! One reason was that it needed monitoring and getting the dosage right could be tricky! When I told my GP my decision ,he was fine with my refusal to take this med. 

      I'm not saying that it's unsuitable for others,it may be a life saver,but I felt it wasn't right for me. I'm no doctor,but having trusted my GP for 4+ years and suffering with awful side effects of my meds, I now read advice from others on here as well as the web. 

    These meds may work for you,but question everything and don't be intimidated  or in awe of GP's or specialists. I'm sure most do a great job, but we respond to meds differently. I have permanent a fib...  6 years! 

      Hope this helps. 

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  • Posted

    You really need to consider being on an anti coagulant until you sort things out. Clotting and strokes are a real danger.
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  • Posted

    Hi Jane, 

    I'm just gonna re post comments I made to someone else. Any comments I make on meds are appropriate to me and me only by the way. Here goes..... 

    Almost certainly there will be a trigger which will do the job. However, as in my case, you can still be in AF and not know it - that is you can be in AF with no symptoms at all - I am such a case in point. I too had about 3 years of palpitations prior to being diagnosed. I was put on Bisoprolol and Warfarin. Warfarin was easy and still is and I self test for my INR. Bisoprolol was very hard for first 6 months but I perceivered with it and nowadays  I can say my last recorded AF event was in April 2015. Food and digestive issues (bloating) were a trigger for me but I consulted a Nutritionist who put me on a course of probiotics then advised me on a change of diet and that over the last 5 years + seems to have done the job. BUT I know I'm not cured and because my left atria has been damaged I know this rotten thing could return. I try and keep as fit as possible, try and keep weight off, keep blood pressure and heart rate low (currently around 127/72 with HR at 63). I was 65 when diagnosed in Jan 2010 and turn 72 this Sept. I also still work 30 to 40 hours a week driving a shuttle bus.I work in the tourist industry so in addition to the bus driving I have a lot of manual handling of passengers baggage, most of it 15 kgs or more in weight. So that keeps me fit.

    Medsd are never a quik fix - very much long term so if you go on them for 2 to 4 months and expect a miracle cure it just ain't gonna happen. I wanna stress though, my diet is nothing to do with Warfarin ( I know what I can and cannot eat with that and its no big deal) .... my diet is aimed at calming the vagal nerve which controls both heart and digestive system. A calm vagal nerve = a calm heart. I might also add that I still do alcohol, doesn't affect me - usually a lager beer, red or white wine or G & T ! (Not all together Lol!  )

    You say it hits you late evening .... just consider the guts digestive process - consider when you eat your evening meal - try and research or google food and the heart or vagal nerve. At my worst I could start bloating, depending on the food I'd eaten, in a little as an hour or 90 m inutes to as long as 4 hours. Just a consideration to throw into the melting pot !

    Good luck.

    John

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  • Posted

    All of you out there...please read drjohnm..he's a electrocardio doc,who also has a fib,but also is at the forefront of this medical problem. Also read medscapeP1 legacy article. It's latest research shows that the heart can remodel itself...it is a very reassuring article. Hope this helps everyone who suffers a fib. 
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  • Posted

    Hi Jane,  I was having PAF episodes regularly about twice a week, at that frequency it is difficult to detecty triggers.  I only started AF after being on Ramapril for a couple of month, GP's would not acknowledge a link, eventually got on to cadesartan, but also cut my alcohol intake to very little.  PAF episodes decreased to about once every three months.  Found red wine to be a trigger, after one glass as part of a celebration, AF episode started at bedtime lasted about twelve hours before it disipated.  Also picked up on late evening coffee as a trigger.  I have been listed for an ablation for 18months now, not sure its worth it.  I take, simvastatin, bisoprolol, equilis, candasartan, with only minor side effects, tiredness and poor sleep.

    In conclusion, cut out stimulants such coffee and redwine (tannin), late in the evening, and get the GP to look at alternative drugs.

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    • Posted

      Thanks Gary. Don't drink or do coffee, so nothing to cut out. But definitely going to speak to my doc re drugs as not happy with Dogoxin - read awful stuff about it even going so far as to suggest it should be banned for afib. I hope I get the option of ablation. I would definitely go for it. Good luck. Jane
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  • Posted

    I likewise wanted to do without medicine as much as possible. 

    But there came a point when the AF episodes were too frequent and long not to consider an anti-coagulatant. So at the very minimum you need aspirin or equivalent to prevent the possiblity of a stroke.

    AF episodes depending on their length used to make me really tired and then exhausted .Not surprising really as they interfere with your blood supply. Try not to do anything through episodes... not always easy but it will reduce the fatigue.

    A pill in the pocket strategy with flecainide might be something you could discucc with your doc. Only take it when you feel an episode arriving...rather than a daily dose of something

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