do you have sick sinus syndrome, with AF?

If so can you share what your medication is and if you get on ok with it please? Im aware of supplements side and just want to know about the medication side please.

I have a pacemaker for the slow heart aspect and cant tolerate beta blockers due to copd and my GP seems to think she can only keep me on diltiazem for the AF, or give me flecanide which nether of us want, but I think there must be other options and want to investigate them.

And who better to ask than those of you who have it!

Carole

9 Replies

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  • Hi Carole

    I have not been able to take Beta Blockers (as a general rule apart from in a sustained AF episode) because of the sick sinus giving me Bradycardia.

    I have both and am taking Propafenone (Flecainide didn't seem to work for me). I've been on it since last summer prior to a cardioversion as I had got stuck in a fast flutter (rate controlled by Metoprolol). The Propafenone converted me back to NSR before the cardioversion and have been on it since (when I stopped Metoprolol as the sick sinus would make heart rate too low). I had an ablation 8 Nov and told to stay on it until 3 month review. I had the review and discussed my use of Propafenone as I wasn't sure it wasn't adding to my irregularities and also how long you should be on it. We agreed I could trial reducing dose slowly. The other drug I have read about here that I am interested in for this combo is Disopyramide; I've never had a doctor mention it to me, but am going to try to off the Propafenone.

    I tolerate Propafenone very well with little or no side effects that I am aware of, the drug doesn't make me tired or nauseous, though still feel rough when heart rate very low or very fast or in AF. Always hard to know how effective drugs are when you still get AF, flutter and other irregularities. I believe that there are contraindications in taking it of you have other conditions but I haven't. Not sure if EP or cardiologist would have to prescribe it - pharmacist has to order it in and GP hadn't heard of it.

    All the best finding the right treatment.

    Jo

  • Thanks Jo, I will look into those meds, but I don't think I want any Disopyramide. It was called rythmadon when I was given it intravenously to settle an episode of what was actually wolff Parkinson white syndrome, but believed to be svt at that time, and my heart stopped dead and that sort of puts me off trying it again. Wil look at the other though, Thanks

    Carole

  • Oh Jo, I have a pacemaker for the brady, it kicks in if my heart goes below 60. Brilliant. Felt like I have a life back with that in so if you can, get one. xx

  • I have been advised I have additional patches of disease within the electrical pathway so I am too high risk for pacemaker to treat bradycardia and can't have medication to slow AF because of impact on slowing ventricles. The only medication I am on is Rivaroxaban anticoagulant.

  • ouch. Im sorry to hear that. I know how ill I felt before my PM. and feel for you. x

  • if you have been advised by your cardiologist to take flecanide but don't like the idea you could discuss it as pill in the pocket= just to take when needed??

  • Hi, sorry it wasn't clear enough, it is my GP who says the alternative to diltiazem (Tildiem) is to take flecanide and she doesn't want me on that. I have read a lot of bad stuff about it and felt I could agree with her on that. Don't see cardio till xmas this year now as he is happy with leaving me as I am.

  • I have sick sinus and got a pm for bradycardia and PAF. Treated first with bisoprolol (no copd) for several years. Then dronedarone was tried when PAF got worse. Did not help really. Propafenone since oct 2013 150mg x3. For about 6 months no AF. Lately a few symptomatic attacks and maybe things are getting worse. Anyway I'm still doing well. No side effects what I know of. Taking it always with some food, otherwise abdominal discomfort. I think you always need a specialist to start the treatment, not gp.

  • Hi Varina, thankyou for reply, I agree with the specialist comment completely.

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