Recently Diagnosed with AF

Ten days ago I was diagnosed with AF after an episode which resulted in a trip to A&E in an ambulance. On reflection this is the 3rd episode I can identify this year - the previous two episodes were very short lived & calmed down on it's own within a few minutes.

However since then I have gradually got very much weaker generally. I am now at the point that cannot walk any distance without feeling unwell. I generally walk very slowly and do not force myself to get out of breath.

I was wondering if this is in the range of possible reactions to an AF episode or if the AF could have been caused by another issue or if the AF is completely unrelated to this other symptom.

I have had several ECGs since the episode all showing normal.

I am waiting a few investigations - another blood test today, Echocardiogram in 4 days which seems an age away, and angiogram which is likely to be 2 - 3 weeks (I am so anxious I am investigating going private).

I hate the waiting and just feel as though my condition is worsening but feel powerless to do anything about it! I am usually a very positive person, but I am struggling to find the positive to hold onto at the moment.

I am not sure what I want to achieve by this post, but just writing the message has been therapeutic.

17 Replies

  • As it says on the cover of HItchikers Guide to the Galaxy. DON'T PANIC.

    AF is a scary thing as we all found out. Knowing there is something wrong with our hearts tends to freak us out so you are not alone.

    AF won't kill you. Fact. It will change your life but not always for the worse. Having the chance to re-assess our lives and reduce stress, bad diet. alcohol intake etc means that our life expectancy may well be higher than before.

    Go to AF Association website and read all you can about this mongrel condition as knowledge is power. Ask questions here and we will try to help you find the answers.

    You don't say what if any drugs you have been put on and many will make you feel tired and weak but AF can do that as well often for a day or few after an event. Don't waste your money on private appointments as your care so far has been very good and your time frame better than average. Try not to worry as that really will not help and try not to look for things that are not there. I know your life has been turned upside down but it will get better and in time you will learn to live a normal life again, just not quite as kick arsed as before. The Echo will tell a huge amount about the structural state of your heart and to be honest after that the angiogram is almost superfluous. Yes it will tell if there are any reduced arteries going to the heart but if the size and pumping capacity shown by the echo are good there probably isn't much wrong. AF is very often something people have when their hearts are otherwise mechanically perfect.

    Be positive again. AF may be IN your life but do not let it be ALL of your life.


  • Thanks Bob.

    I am not on any drugs - I was given "pill in the pocket" Bisoprolol, but have not had another episode since the visit to A & E. so not taken any.

    The AF is not my biggest concern, but the degradation of my general condition is. I was fine for a week after the episode, but this week I have got gradually worse day-on-day and am worried it is not a result of my AF, but rather my AF was a result of something underlying that is causing this worsening problem.

  • You won't know whether or not there is an underlying condition until you get the results of the tests. It may feel a few days is a long way away, the reality is that it is not and that you are receiving very prompt treatment. It is the Unknown, unknowns which are the cause of your worry. It often took me 2-3 days to recover from the an AF episode.

    If you have what is called Lone AF you could be having short runs of AF which you are not aware of and this will certainly cause you to feel much less able than you are used to, breathless when exercising, muscle fatigue, general tiredness are all symptoms. If you are someone who has had never had any illness this will feel very debilitating but I assure you, you will get used to it but it does take time.

    As Bob says knowledge is power and learning banishes fear so get curious - go to the AFA and read, read, read and research - firstly this a great distraction, secondly you will be your own expert and can therefore have informed dialogue with your doctors - this means you are treated much better generally I have found. When you ask relevant, informed questions you get much better answers - knowing the questions to ask and how to ask them is the key.

    You don't say your age or your general well-being - are you generally a very fit person who does lots of exercise? These factors will also influence your anxiety levels. Also be informed that there is a direct physical link between AF and the vagus nerve which is the 'brain' of the sympathetic and para-sympathetic nervous system - fight -flight - freeze mechanism. This means that AFers feel anxiety very viscerally - which means we worry about that.

    Can you see the vicious circle building? Address the worry, distract yourself for the next few days - use self talk to work how you are going to cope with this - develop a plan and then stick to it!

    Keep us informed, this a is very informed, friendly and empathic group so know you are not alone.

    Best wishes CD.

  • Welcome to the forum and well done for finding one such valuable source of help and advice - the other being the main AFA website. The weeks following diagnosis are, in my opinion, the very worst when fear, worry and confusion are uppermost in our minds and the tests seem to drag on and on. However, things do get better as more information about your heart health emerges and a treatment plan is developed.

    Your greatest enemy at the moment is worry - I worried myself sick, imagining all the worst possible things which I was convinced would certainly happen. It's awful to go from being a positive person who coped with life and felt fit and healthy to one who has a diagnosis of a 'heart condition' - even though that heart condition usually is controllable and won't kill us.

    I know what you mean about the degradation of condition - I felt quite chipper after I got home from hospital for a few days until my worrying started. It's so easy to say don't worry - but we do - so try to think positively, get through the essential tests, read all you can and learn about the condition. I find deep breathing helps to calm things down and it's useful if you can continue with normal hobbies or interests - it helps to keep AF in the background of the mind and not constantly demanding full attention.

    Do keep in touch and if you have any questions, someone will be able to answer.

    Best wishes

  • Finvola, your description of what you went through after being newly diagnosed, is an identikit of mine , as you will have seen from my recent newbie fearful posts .( still going through it ) So I'm not in any position to give advice to this latest "newbee" other than, stay with this forum , it's truly a lifeline . Thank you again , all you lovely people out there who take the time to share , inform and comfort those of us starting on this road ...

  • Hi there I am so sorry to hear you are poorly. You've come to the right place for help though!

    I was recently diagnosed out of the blue and at 49 and always fit, with 7 year old twins it was just not what I needed to hear!!!

    Due to an insensitive arrogant cardiologist (aren't they all?!) and a Moaning Mrytle GP I've had both sides of the "prognosis coin" from "its no big deal" to "you have a heart condition and it's very serious". I am inclined to tread the middle ground myself.

    I received my diagnosis in writing which was far from ideal and then suffered 10 days of almost constant A-fib....much more than the days before I opened the letter. Culminating in a full on 26 hour episode of no sleep and abject terror. And all because I was stressed to the gills about my diagnosis and lack of medicine.

    Fast forward a couple of weeks and I have verapramil, a new diet and a completely different attitude. I've kicked Moaning Mrytle to the kerb, played the cardiologist at his own game by asking for a referral to an EP and stopped taking my pulse several hundred times a day.

    As others have said you won't drop down dead and might very well do things now which protect your health for a fitter old age than you might otherwise have done.

    All good wishes to you.

  • Do you know whether or not you have sleep apnoea? If you do, then both conditions need to be treated. More and more research is showing sleep apnoea to be one of the primary causes of AF. Both conditions can leave you feeling fatigued due to the reduced oxygen getting to the brain and the rest of your body. Good luck!

  • Thanks everybody for the replies - the feeling of not being alone is very reassuring and the comments are very useful.

    So last night I went to A&E after almost blacking out climbing stairs to go to bed. The first attending ambulance man was very good and had me on an ECG for 20 - 30 minutes and during that time I had a short period (1 - 2 minutes) of "fast" AF. I had absolutely no physical awareness of the episode.

    However the knowledge that this is the probable cause of my general feeling of ill health has been like a weight lifting from me and today I feel vastly improved.

    The rest of the time at A&E was not especially pleasant, but did give 5 hours of time to do more reading. But for me just having the certain knowledge that the AF episodes are happening without me knowing feels like a huge step forward.

    The road forward from here will have highs and lows I am sure, but today feels like a good day.

    To answer a few other questions raised earlier. I am 51 and have been active in sport all my life, but that tailed off last year after a not very successful knee operation.

    My wife is adamant I have sleep apnea, but that is undiagnosed at the moment. That is something else to take up with GP/consultant. My local hospital does have a sleep disorder clinic.

  • OK so go to your GP and ask for a referral for a sleep study, GP will go online and ask you about 20 questions - if you score more than about 11 you are likely to have SA (sleep apnea) and they should refer you.

    Sleep study involves kitting you out with wires, bit like ECG and an oximetry finger sensor and a small mobile recorder about the size of the old cassette recorders which you wear for that night. You take off all the sensors the following morning and delivere the equipment back to the hospital (this is about £10k's worth of kit and very accurate. You will receive the results within a few weeks.

    If you have SA then it will compromising your health BIG time! SA is not just snoring - it is when you stop breathing, sometimes for up 20 times an hour, for up to 1-2 mins. It is the biggest known causal link to AF, it is very easily treated by wearing a special mask CPAP - takes a while to get used to but when you do and are able to wear it for a full 7-8 hours you will not believe the difference it makes!

    I have used CPAP now for 18 months now and it is the one single thing that has improved my QOL. Having had 2 ablations for AF and had no AF episode since CPAP. My EP referd me as he believes it has great value.

    You will get a handle on this and sounds like you have made a good start. You will find quite a few endurance athletes, mainly cyclists on this site who have learned to live with AF and continue to exercise, having learned how to moderate their activity so that they do not overdo things.

    Adjust and adapt is the way forward,

  • from what my wife says it sounds like sleep apnea - she says she sits there waiting for me to start breathing again.

    However she says she only notices it after I have had a drink, which I have not touched since my first AF episode! Still feels worth checking out

  • So glad you are feeling lighter. It is a very rocky road at times. I have had AF for a year now and it's increasing. I try to remain relaxed and regard it as a nuisance mainly. It won't kill you is a good mantra. I am down to have sleep study,there is a definable link there. Find out as much as you can on the subject and I told hospital staff etc from the beginning I want to be informed and they do which is great. You will move on and live your life and push it into the background. Good luck.

  • Taking your last point first - I could not agree more and reckon yoiu have made a goos stat in whacking at a post so you have I think achieved something . .

    Like many i found being on even a moderate dose of biioprolol was making me feel breathless , perhaps its that , that is doing you in , you should ask.

    The waiting bit does add to the anxiety doesn't it ? and the not knowing does not help either but take comfort in knowing your are now on the radar.

    Post away an you will feel a lot better in your own mind.

  • Have you looked at your electrolytes? What is your height and weight? Have you been bitten by a tick in the last decade?

  • I would not know how to look at my electrolytes. I am 6ft sand weigh 96kg. I have had insect bites in the past - bees & wasps certainly, cannot remember a tick but it is not impossible

  • Well Magnesium inbalance can cause AF as well as Sodium, Potassium and Calcium. Plenty of fresh fruits and vegetabkles will help keep these up. A banana a day is a good thing-better than an apple.

    You may want to lose a few stone, inless you're naturally burly/big bones. This will help with the possible sleep ap.


  • Yes a few kilos of weight could do with coming off - but it is going in the right direction at the moment.

    My fruit and veg intake is pretty good I generally have 4 or 5 fruit a day - a banana is always one of those. Add to that a few veggies too and I feel pretty good about that.

    I gave up caffeine completely 18 months ago. I am also more concious of my salt intake through food and have cut a lot of processed foods out of my diet - I eat much less bread these days - generally it is salad for lunch instead of sandwiches. I make my own porridge for breakfast everyday instead of cereals.

    Beer is my main vice, but I had cut that back over the last year, and obviously not had any since my AF.

  • It will be OK. Lean on those that have been there they have valuable advice and God if you are a believer.

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