Bit of a dilemma

Recently I had a prolonged event of tachycardia, in all its types, but with occasional episodes of AF when, after about 3 hours of very uncomfortable fast AF, I realised I had gone back into nsr. That was a week ago and was such a relief after feeling unwell for such a long time, the longest I've ever experienced, that I still can't quite believe it. I'm still getting occasional ectopic beats but after four weeks of being severely out of rhythm they seem relatively mild in comparison.

I've been on 120mg Diltiazem twice a day for just over three weeks, after p-i-p Flecainide and Bisoprolol didn't work for me, and (long story short) was given 15th December as date for a fourth ablation at the BHI.

I spoke to the arrhythmia nurse on Monday and told her that I'd gone back into nsr, a phone call from her today via the EP gave me the choice of staying on the Diltiazem and postponing the ablation to another time, or stop taking the meds by tomorrow in the hope that I would go back out of rhythm before the 15th so the EP could see exactly what was going on when he came to do the procedure.

Bristol want me to have an ECG, just to confirm I am in sinus rhythm, so that's booked for tomorrow with the GP. Although my gut feeling is to carry on taking the Diltiazem while it seems to be doing its job, I do wonder, having been given the choice (which I don't like having to make on the spot, it's too big a decision to my mind), whether I should go ahead and have the ablation while it's being offered.

What are other people's experience with Diltiazem? Is anyone on it long-term and if so what dose do you take? Also do you have any side effects from taking it for a long time?

Thank you for reading this and for any advice or opinion you can give.

9 Replies

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  • Diltiezam didn't suit me one little bit. No calcium channel blockers do as my ankles swell up like balloons.

    My question to you is are you prepared for a lifetime of drugs which may stop working or would you rather not try to knock the AF on the head before it gets too much of a hold? The longer you leave it the less likely of a good outcome. IF ablation has been offered why not take it before they take the option away. NHS is never going to get more money so grab it while it lasts. Cynical? maybe? Do understand that you may need more than one procedure and that it WILL take some months for things to settle down afterwards.

    Only you can decide but whatever you do make sure that you do it for the right reasons.

    By the way you don't need to be in AF at the time of the ablation. They have some clever drugs which they can use to simulate it so I don't necessarily agree with your arrhythmia nurse on that.

  • Thanks for your observations, Bob, much appreciated and I understand all the points you make.

    However, I've already had three unsuccessful ablations. During the last one the EP in Oxford did everything he could to try to stimulate AF during the procedure but couldn't make it happen, and said if he did another one it would have to be when I was out of rhythm, although he later changed that to not doing another as he had done as much as possible previously. The EP in Bristol has also confirmed my being out of rhythm would be the best time to do an ablation this time round, which is why they offered me a date so quickly.

    I do understand that medication may not be a long-term answer and the longer I leave it the less likely I'll get the chance the way things are going in the NHS, but for now I'm really reluctant to have a fourth ablation when the odds are not stacked in favour of a successful outcome. Also my family has had to endure all the worry and stress that is inevitable each time I've had an ablation and then found it hasn't worked, so I'm reluctant to put them through it again either.

  • Fully understand with you background. Good luck with whatever you choose.

  • I've had three ablations and was able to give up antiarrythmic medication after the second one. I'm very happy with the way I am and so is my other half. He feels it would be better not to consider a fourth ablation.

    When I see my EP in January the options to control the bits of AF I get have to be a) to take flecainide again on a daily basis - I currently use it as a pill in the pocket - or b) to have another ablation. Option c) would be to stay as I am and hope to be relatively AF free. I like c) the best and a) the least and in your shoes I feel I might be opting for the ablation.

    When I had my third ablation a year ago I wasn't in AF and didn't have to give up any drugs because I wasn't on any.

  • Not a great problem long term other than ankle swelling. Usual dose is about 60 to 120 mg twice daily

  • Don't make a big decision on a bad day. Give yourself a moment to calm your thoughts then your decision making will be clearer and you will make the right choice that is best for you. Best wishes.

  • Please remember your family will worry about you regardless - undoubtedly they have been really concerned about you these last four weeks without any ablation! And I am sure they wouldn't want you to forego any procedure on their account.

    Very best wishes for whatever you decide.

  • I took 240 Diltiazem for a while and felt like a slug but 120 suited me fine and I would have been happy to keep taking it but I had symptoms of Sick Sinus Syndrome so I had to stop. If I were you I would give it a bit longer as you have been given a choice but then if you take my advice and are poorly again next week you will hate me! Really only you can decide on the balance of risk - ablation versus possibly having recent scenario repeated.

  • Hi Buffafly and thanks for your post. I'm not too bad on 240 Diltiazem so far, whether that's because it's slow release or because I split the dose I'm not sure.

    If the tachycardia & AF come back next week I shall be kicking myself but certainly won't be blaming you for your advice.

    What I gather from the EP is that he will do one more ablation but then that's probably my lot, so am reluctant to jeopardise my last chance while things are ticking along nicely at the moment. It makes sense to me that I should be out of rhythm at the time of the procedure so that he can pinpoint the problem area exactly.

    What really concerned me is that I had to make a decision then and there yesterday, no option to think about it for a bit, so I'm going with 'if in doubt, do nowt' as the best course of action at present and hoping I've got it right.

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