Don't know what to do anymore

Hello, everyone!

I am only 45 and suffering from AF for 5 years. For the past 3 years my episodes caught me everywhere. In my home bed, in the cottage, in a Mexican resort and the airport. Last November I had an ablation. The situation now even worser. 4 episodes since November. I am in the corner now, don't know what to do (((( Taking propafenone, but seems to me it doesn't really work.

13 Replies

  • Hi kristina

    Ive had af for 5 years now and though my episodes are getting more frequent most of them dont last for long.the longest ones go on for 1-2 hours which is uncomfortable to say the least. How long do your bouts of af go on for? Im still debating whether or not to have ab ablation. Im frightened of the prospect of having it done.any episodes are horrible and i thank the lord for the medication thats helping me cope.

    I hope things improve for you i find this forum most helpful. Theres a lot of af sufferers out there. Good luck fot the future and try not to let it rule your life

    Regards richard

  • All my episodes are long, the last 3 ended by cardiovert

  • Sorry that they last longer kristina. I know its a pain in the --- but my family when i moan about getting af they say well it wont kill you!! Only those who dont get it could comment like that.!! I try to put a brave face on it but there are times when i feel ive had enough of this and go for an ablation but deep down im a coward when it comes to hospitals and things poked into you!! We all try and gee each other up on here so dont feel embarrassed about venting your feelings. If you are down in dumps email me and we can chat .im a good listener as are the majority on here.

    Good luck and chat to any of us on so glad i found this forum.

  • Hi Kristina,

    I expect the hospital will have told you that sometimes a little "touching up" is needed when the heart heals after ablation and small gaps in the scarred tissue allows the signals to get through that cause the AF

    As you are young, it's best to talk to your consultant about this and se if they thinks a little more needs to be done. If you were older you could just taks meds but for the young ablation is thought best because of the long term effects of medication

    Lots of people who have had ablation will advise you when they see this post of yours Good luck

  • Thank you rosyG

  • Hi. I think you need to get your doctor to change the dosage. I was on the same medication for 12 years at 325mg twice a day and four ablations. But in April I started having episodes like you again. I had two more ablations and two medication changes. I ended up with a sympatectomy. I still have AF but it's not as bad anymore. Your going to be ok. I understand your fear. Feel free to message me or reply if you need someone to talk to.

  • Thank you very much for your support!

  • Hi Kristina - chronic conditions do drag you down and it is such a shock to find your life disrupted at such a young age. And, unfortunately, because AF is not immediately life threatening and there is no proven protocols for eliminating AF permanently - we have to think in terms of managing it.

    Many people find they need more than one ablation so do go back to see your specialist.

    Lifestyle can play a part - plenty of posts on here about that and different people have varying results from adding this or taking away that.

    All treatment, apart from anti-coagulants, are considered for imrpoving your QOL and eliminating symptoms. I found all the drugs just gave me side effects which made me feel ill all day, every day. I could manage the AF but not the drugs and if they don't work anyway I couldn't understand and no doctor ever gave me a good reason as to why take them?

    A good question protocol I learned recently when seeing your doctors is this:-

    I - immediate - symptoms - what are they?

    C- what are your concerns

    E - what are your expectations

    If you can convey these concisely to your doctors you should be able to have a constructive dialogue.

    If you moan and waffle and go round the houses - which let's face it we all do because no-one else wants to listen - doctors tend to switch off.

    Best wishes and keep posting, moaning, venting and ask as many questions here as you like, there are plenty of us here to share with.

    Best wishes CD,

  • Hi Kristina, so sorry to hear that your situation is worse since ablation, so was mine so I really do feel for you, full of expectation and then zoom down to the lows again. You need to establish what is actually the problem, request further assessment and future choices so if you haven't done so already, make an appointment to see your cardio, take notes with you and make notes whilst you are there, ask what choices are available to you now and so on. Good luck and keep your chin up as I am sure there is still more that can be done to help you.

  • I am sure there is help for you but you need to find it. I would consult another cardiologist or two. You may also look at Forum. There are people from several countries with a lot of knowledge and experience with managing difficult AF problems. They can often recommend excellent MD, cardiologist or hospitals. Wishing you good luck!!!

  • Hi. 4 PAF episodes in a year is not much if they can be stopped quickly with a PIP response. I had my ablation to get rid of the PAF and to stop taking Flecainide. I still get the occasional PAF attack, but that's the only time I take Flecainide. The PAF stops quickly. My EP says I can have another ablation in the future to clean up the remaining pathways if the PAF becomes more frequent. At present it's once every 6 months.

  • I see you needed cardioversion. That happened to a friend of mine after his ablation. He was on continuous Flecainide. I found taking that drug continuously made me worse rather than better. It works for PIP but not for continuous use. Maybe the drugs are an important thing to review?

  • My grandson had an ablation at age 17 for another problem. I felt bad for him--and for you, too, Kristina--having such a problem so young. I'm contemplating ablation myself and thinking I might go to a research hospital where they do a lot of them, rather than the local hospital. You might also benefit from getting a second opinion.

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