Long QT

Hi. Can anyone give me some advice? I am 36 and have been diagnosed with atrial arrythmias (AF, atypical atrial flutter and atrial tachycardia). I have had an EP study done and an ablation which was not successful. I have tried 3 different antiarrythmics but had to come off them as disopyramide gave me prolonged QT and apparently it was very long and potentially very dangerous. (It was caught by a chance ECG). I am now petrified that i am predisposed to long QT. Any ECGs i have had since coming off the medication have been normal but i have this awful fear that something has been missed in ky diagnosis. I am under the care of an EP who has seen a lot of my ECGs but i keep worrying. I never faint but sometimes get presyncope. I tolerate exercise fairly well but have not exercised in 2 weeks as i have had more frequent AF episodes. I have episodes of fast AF for between 5 and 7 hours a day. Any advice greatly welcomed as i am worried sick. Thank you.

4 Replies

  • I have LQTS it was found when I was given Amiodorone my cardiologist gave me a site called credible meds they list all the drugs you must not take the only drugs I can take (they tried a lot) are bisoprolol apixaban candesartan imdur potassium frusemide they think I have been predisposed to it all my life but it was the Amiodorone that made it happen if I go into AF I have to be cardio verted it has been nearly 2years since I was diagnosed and have coped very well as long as you keep well informed about what you can take and always carry something with you saying you have LQTS and if you go to hosp don't let them give you anything without talking to your cardio try not to let it consume you as stress won't help regards Mazza

  • Vony

    I am always pleased to see a post from you though it is a shame that it is because your condition is still causing concern. It can be a long and lonely journey and mostly I reply to help keep you company not with any great insight.

    It is bound to be scary when you find out you have such a threatening condition and sometimes it can feel harder knowing. Whilst difficult to deal with mentally, you have been given the opportunity to act on information and keep yourself as safe as possible (and we are all running other risks every day but just don't know it or acknowledge it). So you now know to avoid specific drugs and intervention that is likely to cause harm.

    Has there been any discussion about the suitability of an ICD for you with your condition? There was a paper called the Whole Hearted Campaign issued by Arrhythmia Alliance that showed that the UK inplant rates were very low in comparison to other countries. I urge you to have that clinical discussion with your team in case this is a suitable avenue to protect your life. It was a PDF file so you might be able to locate it on the internet.

    It is tough being forced to confront your mortality and fear; but many never get the chance so try and use it to mobilise the best treatment. I wish you so much good will.

    Take care and keep well.



  • Jo, it is so wonderful to hear from you, as always. Your posts always take away a bit of the isolation i feel at times as you are positive and sensible:)) how are you keeping Jo? I think i am just getting into a state about the long QT as i was in hospital throughout that time and have seen my EP twice since who has never actually expressed any concern about long QT as a condition..he said i was toxic from the disopyramide. Some days i just feel filled with doubt and fear. Surely they would have investigated further if they suspected a life threatenening problem?? I really hope you are doing well xxx

  • Hi Vony

    Things are mixed for me; my treatment plan sounds like Hobson's choice - this time last year I was hopeful of successful ablation; return to previous health and fitness (or at least improvement) and come off all drugs. Not to be; permanent adjustment of life required; including getting my head round that.

    I have many things to be thankful for and know this so try not to dwell on what I have lost. I think it's important to own your own health and concerns and ask the difficult questions; so if you are worried why not ask the direct question of your EP and put your mind at rest.

    I'll let you know where I go from here.



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