Help! Has anyone experienced this.....

Posted , 8 users are following.

Hello fellow afibbers. I was only diagnosed a few months back and was put on Flecaine for a month to see how I got on. I then had to see my cardio when the course stopped, which meant there was an short intervening period when I was on no medication. All had been fine on the drug, but.... And here's the thing.... Two days after I came off it I had a really awful episode. However, this time it wasn't the rapid heart beat, but rather the heart seeming to be pulling itself in all directions at the same time. It was terrifying! After a couple of hours of this my heart gave an enormous jump - really was like it had defibrillated itself - and went back into normal rhythm. I told my cardio who said that, yes, that can sometimes happen. I was still so sore and upset by what had happened I didn't think to drill further to find out exactly what this was and whether, perhaps, coming off the drug had caused it! Anyone else out there experienced anything similar please and maybe had an explanation put forward? I'm back on the drug again now and feel ok again. Thank you everyone.

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  • Posted

    Hi Jane !

    I was diagnosed in June and put on Flecainide 100-2x d.

    It didn't work very well for me .

    I have had 2 cardioversions and now take Tikosyn and Eliquis.

    Generally it's a bad idea to run out of those potent regulating drugs - always keep current on your prescription . Best of luck ! Didi

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  • Posted

    Here's the thing about an atrial fibrillation diagnosis: the early part of your experience with the disease is uniformly horrifying. However, it is generally agreed that the condition will not kill you. Those of us with the condition have an increased risk of stroke which normally is controlled by anticoagulation therapy. The condition is progressive in so far as frequency and duration of episodes, but you can still live to be a centurion if your parents gave you the right genes. Here is some advice which no newly diagnosed atrial fibrillation patient has ever, in the history of the world, taken: do everything your doctor advises and otherwise just ignore the disease. Live your life as vigorously as you can within your limits and let this stupid condition whither up and die insofar as its effect on your psyche is concerned.

    I am 78 years old and have had atrial fib relation for about 40 years, 20 of which I have been in afib 100% of the time. I have taken every kind of rhythm control drug my doctors could think of and have even undergone ablation of the right side of my heart. I now take nothing except warfarin for the anticoagulation. My wife and I take a bicycling vacation every year and we ride a lot at home in order to stay in shape between vacations.

    Best of luck and success to you. As far as your anxiety is concerned, welcome to the Sisterhood of the Traveling Angst.

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  • Posted

    Hi Jane,

    I was on Flecainide for about 2 years and had a 'successful' ablation about 10 moths ago. Once I had been tested to see if the operation was a success, my GP told me to get of Flecainide asap but to stay on Bisoprolol. The reason that he said this was that I was in sinus, but the Flecainide was giving me palpatations much like you described above - especially at night. I've heard that Flecainide can actually contribute to the wierd and worrying palpatations, but at the same time it controls the AF very well. My cardiologist recommended that I say on it, while my GP recommended the opposite - I've decided to go with the cardiologists advice but I'm aware that Flecainide is a powerful drug and can give palpatations.

    The 'successful' ablation, is no longer totally successful, as I no longer have AF, but often have extra beats or missed beats - especially at night or in the morning; I wonder if this is due to Flecainide and my night-time palpatations or possibly sleep apnia?

    My cardio said to expect weird episodes on and off for up to two years - they seem to be unwilling to brand the ablation for AF a 'failure'; I guess that its all down to postive statistics i.e. keeping the success rate high thereby ensuring future operations and development.

    I'm glad that you feel OK - at least you may be mor ementally accepting and relaxed should it happen again.

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