Side effects of Flecainide

I just found this site. Short version:

Pacers for 19 years now. Am 72. Never had a problem til about 2 yrs ago when I started having the very occasional AF. Saw an EP cardio who suggested drugs or ablation. I went for the ablation and was zapped plenty but the result was unchanged as the doc said he couldn't get my heart doing whatever was causing the prob.

So on to the Flec. 100 mg X 2. It worked. And when I missed a dose, my heart complained with the bodily weakness, awful feeling I associate with AF that lasts several minutes per occurrence. After a pacer interrogation last week, the same doc mentioned no record of AF on my pacer in last 3 mo since checked last. Wait a sec! I had had several episodes the week before. So maybe the prob isn't actually AF.

Punch line is coming. Promise. So I mentioned I'd like to get off the Flec or reduce it and he said no prob, experiment all you want, more or less. At the same meeting I asked him to recommend an allergist and described the symptoms mentioned in the next paragraph. So I went cold turkey. Several episodes the next day, and many the following day; like almost constant. Around noon, I gave up and popped a pill rather than let friends, including an RN take me to the ER like they were about to do. Around 7pm I was back to normal.

Over the last 6 mos, I've developed some seemingly allergic reactions that present as constant watery eyes, and very occasional but now weekly fairly spectacular facial swelling of lips and tongue. The first morning I woke up with the big tongue really got my attention. Well doncha know these are very rare side effects of Flec. so I found, and I hadn't had any luck isolating a food source of these probs.

As it stands this very minute, the doc is skiing in Colorado and I've been told to stop the Flec and add an extra 50 mg of Metroprolol. So far so good since last night but I'm pretty sure I'll take at least 50 mg of Flec if I go into episodic mode, as I'd rather deal with the swollen tongue I woke up with this morning than endure another day of what I've always thought of as AF. I really do wonder if I'm going to die from this any minute. I'm wearing clean underwear just in case.

Any thoughts are welcome. If I've gone nuts please say so. Although that invitation does not extend to ex wives but I digress.

4 Replies

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  • I can't help, but I have enjoyed - sympathetically, of course - reading your tale and I think it might be an idea to have faith in your ability to survive, so do buy some green bananas. I expect you'll stay alive long enough for them to ripen.

  • Hah, well you have kept your sense of humour. I juggle my flecainide as well, so perhaps testing with mg instead just stopping completely? Hope you find some solutions quickly, all the best for 2015

  • Tgzzz,

    Two things in your text are interesting for me: about flecainid: if you have allergy why not ask your dr to change it to propafenone, which has the same type of effect as flecainide. I have it and it helps.

    The other interesting thing is that I have also pacemaker implanted for 9 years for sick sinus and bradycardia. And I do have PAF (dg by an implanted device for 9 years ago). Anyway, I have the same situation as you when they do the yearly reading of pace maker: the most obvious, very symptomatic afs are not registered by pm. Why??? I cannot understand or believe it. Could it depend on the electrodes sitting falsely inside the heart or what?? I would be very interested to hear what explanations you get from your dr, please.

  • Thanks guys for the thoughtful comments. V8, I'm just getting to the med change. I'm a slacker as well. But I walked out last week thoroughly confused that the doc a) didn't recognize the swollen lips and tongue as side effects for Flec. And water just all-but-pours from my eyes. I look like John Boener with a tongue the size of a Texas Pete Bottle. Hell, I make that look good!

    b) The pacer hadn't picked up any action. Impossible. I guess I'm more than a day Flec free. I've been feeling short spurts all afternoon. It was a tad intense for about an hour or so and has backed off a lot over the last hour or so. I feel tired but for sure ok.

    We'll see what tomorrow brings. My appt is Monday afternoon. I made out my will yesterday. Long overdo. If the doc would have scheduled me immediately, I'd have included him in the will, and dropped off one of my kids.

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