Can someone advise what symptoms of AF are to be expected?

I have been told that I have AF with atrial tachycardia. Consultant thinks I have had this for over 20 years that it was missed/misdiagnosed. I have atrial dilatation and fibrosis. I am not on an anticoagulant although told I may need to be prescribed this in the future. I am unclear why the delay (although I think I am low risk of a stroke) but everything I read appears to recommend anti coagulation with AF).

I have AF and ventricular bradycardia (infrahisian disease - unclear if this means heart block)? I can't have pacing in the atria, I believe because of damage to atria. I had a cardioversion which put me into a worse arrhythmia and I've been told if I have an ablation I will have to have a ventricular pacemaker inserted first. Don't think they expect ablation to be successful because of physiological changes to the atria. I don't know if this also means risk of developing heart failure secondary to untreated AF or even if this is a problem associated with AF?

At the moment I am struggling because I have no idea what symptoms to accept and just learn to live with? I am still active, but nothing like I used to be and this is difficult to accept. Not being able to get travel insurance is hard as they won't cover me for any treatment pending. Does anyone else have similar experiences to me and some positive suggestions?

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7 Replies

  • Hi Bryonny and welcome

    OK you really really need to get a long sit down with your cardio and have him/her explain things in more detail as it sounds like there is a lot going on there.

    Right quick non medical thoughts and I am not in any way qualified, so please take all of this from an amateur.

    Atria is the top half of the heart, Ventria the bottom, each divided into two chambers, you are saying you have atrial tachycardia (that means a fast heart beat) with Ventrical Brachycardia which means slow heart beat. Sounds very unusual, but I suppose possible.

    The AF from it's name is Atrial Fibrilation, the atria actually tells the Ventria when to beat and it's the ventria which are the big pumps whch pump the blood around the body.

    If you have AF, then there is no regular beat in the Atria and rather a irregular beat, which obviously as is then triggers the Ventria means an uneven Ventria pump round the body.

    OK now for treatments, an ablation will treat the atria not the ventria, so it's a procedure which tries to bring the atria back into nice Normal Sinus Rhytm or NSR (hopefully), a pacemaker acts on the Ventria so if the bottom half of the heart is not beating enough or not fast enough (Brachycardia) then the pacemaker steps in and tells it to beat.

    OK what to expect, well firstly lots of tests to find out a lot more I suspect, probably an echocardiogram (sort of ultrasound of the heart) Maybe a cardiogram with injected dye, again very simple you lie under a special machine and then inject some dye into you which makes you think you've wet yourself while they take pictures. None of these are in any way painful or difficult.

    They might give you a long term monitor to wear, so this is a machine which takes lots of ECGs over a long period to give the docs a picture of what your heart is doing.

    Heart failure is not normally associated with AF, so although it feels like you are dying, you are not, but that's not to say that the episodes are very unpleasant.

    You will almost certainly need to be anti-coagulated, so warfarin or similar, the risk for us all is stroke not so much heart failure.

    But you are the beginning of the journey, key now is to learn and ask, and understand. Read the AFA website from cover to cover, it's got some great info. Ask lots and lots of questions of your doctor, in fact start writing them down now so you don't forget.

    And then there is always us, we are all sufferers, and we all know what it feels like, so ask away here anytime you like.

    Good luck, and be well


  • Hi Ian,

    Re; your post to Bryonny. I have also replied but the point about atrial tachycardia with ventricular bradycardia, although not very common, from the posts on the site, does happen. I have been researching ECG's and AF with Heart Block and it gives just that condition. My atrial rate, from the AliveCor monitor indicates a rate about 6 or 7 times my ventricular rate, the latter normally around 45 bpm resting. I also have Dilated Cardiomyopathy of the left atrium and a degree of heart failure that my cardio says is a result of the AF. As we have noticed before, all the cardio's can't give the same answer, since some say the opposite to the above.

    Love reading your's and Bob's replies. They are so informative and interesting.


  • Dear Ian thank you so much for sending me such a detailed response. I did send my consultant a list of questions as he provided me with his email as he said he expected me to have a lot of questions. Unfortunately he didn't answer these. When I went to my last follow up the doctors were very kind. The junior doctor called the consultant in who just kept telling me I have a very rare condition! To me that can mean rare, but okay - rare we don't know what to do - rare, a walking time bomb!

    On a positive note, your response to me has encouraged me to be brave and press for more information. Thank you for telling me that A F does not normally pr ogress to heart failure, that is a great relief.

    I have started to access other areas on the website and really impressed with the information, but your response has been truly heart warming - if I can use that analogy! A big thank you, ending this feeling more positive than earlier today.

  • Hi Bryonny and another welcome.

    When reading your post, it was almost as if it was me you were describing. Infrahisian Disease is indeed heart block affecting the bundle if his, that it is named after. The bundle of his are the fibres that conduct the electrical impulse from the Atrioventricular Node to the ventricles. In my case I have Left Bundle Branch Block, (LBBB), that blocks the signal to the left ventricle. Like you this results in a slow heart rate even though I have permanent AF. I think, in some respects, I am fortunate in having the LBBB since I do not suffer from the extremely rapid heart rate that the majority on the site experience when in AF. My resting rate is normally 45 and even exerting myself only gets into the 60's. It is very important that you are ant-coagulated to prevent a TIA or stroke. I've had a few and it is not very pleasant.

    As always, Ian's advise is excellent.The only thing I would add is to make sure that your consultant is an ElectoPhysiologist, (EP), since they are the ones specialising in the electrical conduction system of the heart and its the electrical part that's causing the problem.

    I am 71 and reckon I've had AF since I was around 30, although it was not finally diagnosed until about 15 years ago. I get some bad spells when I just feel extremely tired for a day or two, but most of the time just feel ok as long as I don't do too much. That said, I spent last summer re-roofing one of the sheds on my farm, that involved up and down ladders and scaffolding for about two months. I know it is easy to say and difficult to do, but try not to worry too much about it.

    Again, as Ian says, the site is a great place to air and discuss your concerns and get helpful advice.

    Every good wish to you and keep well.


  • Dear Walter, I am sitting here feeling so uplifted by your reply. I am sorry you have a similar condition to me but to know I am not alone and you are physically very active makes we want to jump for joy. I have been worried about what symptoms to worry about so try to put them to the back of my mind, knowing I will need to ask the consultant at my next visit.

    I sometimes get mild palpitations but most of the more severe symptoms I had several months ago have significantly reduced, although I wonder how much this has been down to my going from a bout 3or4 hours sleep a night to 6 to 8 hour!

    At the moment I don't like to go away on my own and I am more than hesitant about going overseas on holiday because I don't really understand what my risks are. I've been told I will need a ventricular pacemaker at some stage, I don't know if this means infrahisian disease is progressive?

    Consultant said they would review if I need an anticoagulant and was a bit surprised that they did not recommend given everything I have read. I will ask about this at my next follow-up.

    Wishing you well and a big thank you, Bryonny

  • Dear Bryonny, I now find that I require more sleep each night. I usually aim for 8 hours but invariably only get 7 since I spend too much time on this device with a keyboard and screen in the evening. I have the AliveCor ecg monitor and it shows up palpitations that I seem to get late evening. They are actually ectopic beats but I can feel them and see them on the trace. Sometimes 4 or 5 a minute. I reckon it's to do with being rather tired by the end of the day. It's ok in the morning.

    I am on my own most of the time and don't really bother too much. Up to about 4 years ago I went over to Spain every year to do some voluntary work and travelling was OK.

    I also don't know if the infrahisian disease is progressive although I imagine it could progress to complete block, when a pacemaker would be required. I certainly asked my cardio at one point if a pacemaker would help me. His reply :-"You're not ill enough yet". Not very reassuring but then he was just a cardio and not an EP. I discovered a couple of years ago, at the AFA patients day, that I should have been seeing an EP. By the time I did I was told that I had been in permanent AF too long and that the chances of an ablation being successful were very low and the risks, in my case, very high. So I opted for "the status quo". I now suggest to folks who are Paroxysmal AF to go for the abaltion when the success rate is higher.

    Another point of interest for you is that although the SinoAtrial Node, at the top of the heart, is the Pacemake of the heart, there is another natural pacemaker in the Bundle of His that takes over the pacing of the ventricles when there is a degree of heart block. This pacemaker will keep the ventricles beating but at a much lower rate as in our case. Probably as we age etc the rate decreases and then an external pacemaker has to be fitted. Certainly with a resting rate of 45, (even been as low as 38), my cardio and EP didn't seem too concerned.

    As I said before, try not to worry and if you feel like travelling - GO FOR IT.


  • ....Farmerwalt, you mentioned that you were seeing a cardio, when you should have been seeing an EP. at what point is that switch made? and who decides if it's something that should be done?

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