recent diagnosis

right guys i apologise if im going to sound negative here, so if like me your suffering with anxiety about your condition please do not read on

i was informed that knowledge is the key when it comes to this condition, so ive done some reading.......alot of reading in fact, i have some questions and some thoughts about this condition that have left me feeling very deflated and somewhat worried that this for me is an early death sentence...(im 39 soon to be 40)

1. i had an episode of afib last week which reverted back after a couple of hours of taking 2.5mgs of bisoprolol, however ive read that once you have your first episode then its really downhill from there, as the general consensus is that its a degenerative condition that with time gets worse, more frequent this moment i think im still in NSR as my pulse is steady with no extra beats like last week, however am i right in saying that even though im like this my heart is still not functioning like it used to before this, hence the risk of stroke is higher due to clots

3. i also have seemed to come to a conclusion that whilst it mat be able to be controlled to a degree, im resigned to a life of medication, some of which is toxic and will probably do me as much harm as good over the length of time needed to be on them, as i said unlike quite a number of peopl who seem to get this in theyre 50's 60' even 70' not even 40 yet so thats a long long time taking this type of meds...also the ablation whilst for some it gives a few years repite from some of the symptoms it seems from reading more of them are unsuccseful than succesful....people who have had them and are free of anything more than 2-3 years seem to be few and far between

i do apologise to you all for being so down with my post however after doing lots of reading this is where i believe this has left me...i have an appt with an EP 2 weeks today i suppose like everyone im hoping that the a&e dr made a mistake with my diagnosis....however i know thats not going to be the case..

23 Replies

  • Hi Jugsy and don't worry about the content of your post. I am sure we have all been there.

    Yes it is scary and no life will not be the same now but that is the situation with a lot of what life throws at us over the years.

    I was told by my EP that AF won't kill you. No it won't ---but left untreated it can bring on cardiomyopathy (enlarged heart) which can lead to heart failure. The good news is that properly treated this is not inevitable.

    Yes AF almost always progresses if left untreated. AF begets AF is a common mantra.

    Yes the drugs are not nice and as you say often produce worst side affects.

    Ablation is a valid treatment but one has to accept that it may be more than one procedure. I had three before they sorted me out but that was seven years ago and trust me when I say it was well worth it. Life style changes, often well overdue for some, have been found to ease symptoms and some claim to have got rid of AF completely this way.

    O K I know it is a kick in the whatsist when you are relatively young but there is little evidence that life expectancy is reduced by AF. Science is ongoing. Remember that AF has only been treated for less than 20 years and you are in a good position age wise. Remember also that most people who have had successful ablations don't need the support of this forum so any anecdotes are poorly balanced.

    Regarding stroke prevention, yes AF gives a five times increase in stroke risk but again at your age that risk is low. OK many of us believe that anticoagulation is important regardless of CHADSVASC score and for many is little or no difficulty or hardship. Again I fear only the difficult cases show up on forum.

    One thing which is seldom mentioned by doctors and which has been a hobby horse of mine for years is the psychological affect it has on people This seldom catered for by medical people manking it important for us all to find ways of dealing with emotions such as CBT or hypnosis. It is a long journey but can be rewarding if only for the people we meet along the road.

    It may sound odd but as I have said before, if it were not for my journey through AF I doubt that I would have been able to face and beat cancer when it came knocking in the way that I have.

    Its not all negative unless you let it be.


  • Excellent point about only only the worst cases showing up on here Bob. It's not quite the same thing, but I believe there are also probably quite a few people on here like me as well. I've been an intermittent poster on here over the past few years and have always had the intention of becoming a more regular contributor, but, especially lately, I've just got to much on my plate to do so.

    Basically, if I'm posting on here quite often, the likelihood is that the AF is playing up, whereas if I don't, everything's fine - I see the sterling work you and others put in on here and feel guilty sometimes that i don't do more, but I do make a point of looking at the new messages every day.

    As you say, this forum almost certainly doesn't present a true picture of the condition because, at any given time, there are thousands of people with AF carrying on with their lives as normal and, for the large majority of the time, it doesn't have a major effect on them.

    What I would say to juggsy is that although, as an "old fogey" of 59, it's hard in some ways for me to relate to what you are going through, the flip side to that is that if I can live large periods of my life as an overweight and pretty unfit near 60 year old free from AF, there's no reason at all to think you can't.

    Yes, I know each case is different and it does tend to get progressively worse, but your relative youth gives you a great chance because tremendous strides have been made in terms of understanding the condition and successfully treating it in the eight years I've had it. So there's every chance that, by the time you get to my age, AF will not be provoking the common and understandable type of reaction you're going through currently.

  • Juggsy

    I have to agree with the essence of the above post from Tobw and the response from Bob. Most people who are successfully treated on medication and those who have had a successful ablation will drift away (if they found this site in the first place) and get on with their lives.

    I can relate to your concerns as I was a similar age when first diagnosed but I think the best thing you can do is what already have done by getting an early appointment with an EP. Make a list of all your concerns and everything you want to discuss.

    Make sure you get your money's worth!

    In the meantime try to look on the positive side and I would offer a couple of thoughts

    If your episode is not repeated again for say another three months then you have had no AF for 98% of the time (ok still technically have AF)

    Secondly, reading the internet can be of great benefit but also has a down side. If you have a anxious personality or a vivid imagination you can think you are suffering from every ailment and every symptom. Take professional advice and form a balanced view.

    Good luck

  • Oh juggsy I am so sorry you are feeling so despondent. I can promise you most if not all of us have felt as you do at some point or other. The good news is you are young and there will be better and better treatment and possible cures coming on stream. I know the last thing you want at a young age is a condition such as this. Please note that there are quite a number of keen sportspeople in the public eye who are young and have this condition and live a very good life

    There is an olympic rower, a british pairs skater, singer Jessie Jay, Michelle Heaton and other celebrities who function very well with AF or a different arrhythmia in Jessies case. All of them live a full life and clearly function extremely well.

    Wait to see your EP and see what they say. You may feel so much better thereafter. Remember that AF in itself is not a life threatening condition. Also there are many many people who have good outcomes who may never have been on this site or have had good outcomes and have drifted away from the forum as life is back on track now.

    We had one desperate lady here who was in her 40's from the middle east, she was so poorly and eventually traveled to America for treatment. To her her condition seemed hopeless but the last time I messaged her she was back on track and living a very good and normal life with her family. So please do not despair.

    The right treatment plan will get you back on track and move things forward for you. You are in shock (I have been there too) but things will settle. All is not lost, I promise.

    Research is ongoing and remember someone somewhere in this big world is constantly conducting research at any given time and sharing ideas, it will be cracked with all these clever minds applying their expertise. Lifestyle is being looked at by many medics looking holistically at the patient as well as meds and ever improving procedures. Things will improve be assured.

    Big cyber hugs to you.


  • Hi Juggsy. You aren't wrong at all in what you say, but it's perhaps an over gloomy picture! Yes, you may have a dicky ticker but it's not that fatal. I think it seems so much worse when the situation first sinks in, and as time goes by and you maybe have AF occasionally (with months or years of good rhythm in between) and know how to deal with it, you'll find you have regained your life. Apart from warfarin, which I take because I'm over 65, I don't think I'd be on any drugs if I had normal blood pressure. I've had heartbeat issues for the last 25 years. They've progressed but have not developed too significantly.

    There are plusses. You may well live more healthily because you will want to ward off the stroke bogey and as the years stretch ahead treatments and medications will only improve.

    I think most who have had successful ablations are no longer glued to this forum and there are far more complete successes than it might seem.

    All the best!

  • I'm 48 so kind of youngish for AF. Given the amount of money and research the US is putting into this field, I think it is only a matter of time before the silver bullet comes along. This is why I have refused a pacemaker as I do not want to sever the possibility of a 'cure' in 10/20 years.

    We've all been in the position of being diagnosed and the feelings that brings but you will feel better in time I hope.

  • Hi Jugsy - There are times when we all feel the way that you do. Why does it have to be me with this condition we ask! There we were fit and healthy and then wham AF hits.

    The only way I can console myself when AF strikes is to remind myself that there are a lot worse things I could have had. My children are all well and thank goodness it's me with this condition and not them, I have all of my limbs, can see and hear, don't have any of the really nasty illnesses like cancer, Parkinsons, Motor Neurone etc. This will always bring me back to thinking perhaps AF isn't that bad if I have to be lumbered with something. At least most of us have reasonably long periods of feeling well.

    It may help you to know that my sister had a few bouts of AF when she was about 40 and it just disappeared. She went to see her lady GP who told her that she'd had the same and had cured herself by losing weight.

    After years of having AF I've discovered that thinking positively and not dwelling on it can help prevent attacks. Most of the members on here have all learnt that worrying can make the condition worse. I can see that you have been given lots of really good advice by other members of this site. Please believe what we are saying, we are all way ahead of you in this AF game and are answering honestly. Trust us with our advice.

    Always here for any support you may need. Big hug and keep your chin up.


  • Jugsy, hang in there. I know when I first found out I had Afib thought my world was crashing down. Felt like I had another curve ball thrown at me just when I got my life in order. As Jean said there are others out there with a lot worse conditions than us. It could be worse. I'm finally coming to terms with my condition after almost a year. There are some things I can do and some things I can't. I'm pretty active. Swimming and biking. I just had to make some adjustments on my routine. I 've adapted and changed. Just to let you know, I was reading an article the other day where Bristol Meyers is working on a drug to cure PAF. It's a start. I would encourage you to be an active part of your treatment and recovery. Read lots and ask questions.

  • Hello juggsy - don't apologise! Your reading and research is a very necessary part of coming to terms and living with the thought of AF - and yes, some of the outlooks can be scary but not everyone has the same type of AF or the same type of prognosis. The three points you make sound very familiar - probably to all of us - but I would like to add my thoughts to them, 18 months down my AF journey.

    AF can progress rapidly, but it also can progress slowly - over decades, indeed - and it does not necessarily become chronic in all patients.

    If your pulse is steady and regular, then that sounds like normal sinus rhythm but we AF'ers become conditioned to mentally 'watch' our heartbeats and are much more aware of things which would have gone unnoticed in the past. Your risk of clots is something which your EP will evaluate and discuss. Many cardiologists feel that anti-coagulation isn't necessary for otherwise healthy patients under 65.

    Drug therapy for AF can range from the more intense end to the occasional pill in the pocket for single events. Again, not everyone falls into the same category and treatment is geared to the needs of the individual. My research has convinced me that ablation for the right patient at the right hospital by the right EP will work longer term - it's just difficult to identify these three components!

    I so understand your anxiety and worry - our minds process the new knowledge and experiences and cause us to assume the worst will happen. My favourite time was around 4am, lying awake worrying about what might become of my life. The solution for me was the reassurance of a decisive EP prescribing the correct treatment which stopped the episodes. Your EP visit is an important step in having a full diagnosis, prognosis and management options discussion and once that is done you will feel more positive.

    It's just too easy to say 'don't worry' - we all did (and still do). Worry is an enemy and it can be beaten. Take things one step at a time, do things you enjoy and shove the worry away with positive thoughts and outcomes. Keep posting on here - there are so many marvellous people to advise and help you.

    In the meantime, big, big cyber hugs!!

  • hi Jugssy

    So sorry to hear your news. I felt exactly the same. although older than you, it felt like a bereavement and I grieved for what I perceived as a life lost. Whilst far from delighted by the change in my health, I no longer feel overwhelmed by my diagnosis.

    Keep posting and reading, there is so much information emanating from this site. You have much to absorb and come to terms with, but you will.


  • Hi Jugssy. I asked my EP If my AF will get worse he thought about it and said; actually he had patients who's condition has remained the same over quite a number of years. I also asked my GP the same question about it becoming worse and he said definitely not. also there are people on this forum who's AF has remained stable over a number of years.

    AF is very different for everyone so the prognosis is also very different. Write down the things you want to ask your EP, I am sure you will feel better after you have seen him. also you have found this forum where there are so many people that can help you.

  • Funny you mentioned that. My EP told me that Afib doesn't get better it eventually gets worse but he didn't say how long it would remain the same or take til I got worse. He stressed quality of my life during this journey. I'm truly grateful each time I finish a long bike ride or a swim that for today I can do these things. I really took them all for granted before.

  • I suppose it all depends on what treatments you have. my EP was very positive about the treatment for AF. there are many people on here would say that their AF has got better and not worse after having an ablation. and they have remained stable for many years. I cant do a lot of things I use to do so I know what you mean. but I am a glass half full sort of person and believe that the treatments for AF will get better.

    stay well

  • Turn your thoughts around and think yourself lucky that you have been diagnosed before the AF produced cardiomyopathy in the heart. Now that's a double whammy!

  • My Mum had that Barb so I know what you mean.

  • Nothing much to add other than been there, come through it and come out the other end - with NO AF!

    Takes time to come to terms with but it is not a life changer, unless you let it be.

    The only thing I stopped doing immediately was scuba diving after diagnosis, well I think I had one last dive. During the Ablation my EP found a hole in the heart so I shouldn't have been diving at all but in 20 years, I had no problems whereas if I had known I would never have seen so many beautiful creatures and experienced so many wonderful times and have so many happy memories. Happiness is the antidote to anxiety - do things you enjoy!

    Now you know the worst, the only way is up.

    Anxiety is more likely to get you than than the AF so attend to that. Good luck and keep posting, best wishes CD

  • Happiness is the antidote to Anxiety (love It)

  • I've had AF for 16yrs,now on "Pill In The Pocket" prescribed Flecainide

    300mg by my Cardiologist,take this soon as AF starts,within 40mins to 2hrs

    I'm back in rythym,this works perfect for me.

    When I get over this I put AF right out of my head and get on with what I have to do ,that is get on with my life,take all medication recommended

    By Cardiologist,if you look after your heart,it will look after you.

    Anticoagulants are very important,I take Rivaroxaban,so between taking

    This and other medication prescribed,I feel much more confident,knowing

    I am looking after my health.

    Try not to be too anxious,really hope things improve for you.


  • Hi Juggsy,

    I'm 46 and everythings happened since February this year, to go from feeling fine to having a heart condition scared the bejebus out of me, I lay in the hospital bed mentally writing my will and wondering why. 3 months later I've had 1 ablation (made things worse to start with) spent 10 days in the cardio ward after a chest infection kicked my AF into overdrive (will be getting a flu injection this year to stop the kids infecting me) and am now scheduled for a second ablation in 3 weeks.

    I have also just played a round of golf for the first time since it all started , my golf was rubbish but the fact I had a game with no AF issues was such a confidence booster, I'm now gardening, doing rubbish DIY and next weekend am off on a Stag do to Dunnoon for more golf and maybe a hole or two of foot golf. I will be sticking to beer and avoiding the shots but fully expect to be one of the guys even if it's the slow guy in the corner 😉.

    I suppose what I'm saying is that I'm starting to realise that although I am not as healthy as I was I'm not quite on the scrap heap yet and as long as I follow advice and learn to translate how I'm feeling I expect to go back to a relatively normal life.

    i'm sure somewhere along your journey you will also start to feel more positive I hope it's sooner rather than later as that's been a big thing for me to start looking forward again yes even putting 3 balls off the tee into the lake made me smile rather than throw the club after them as I was happy to be out there.

    Good luck

  • Well I'm going to walk the mile or so to watch my rugby club play our local rivals in the last game of the year, if we win we win the league, hardly ideal with this condition I suppose, if we win I may even have a pint or 2 here's hoping I'm ok after it all......thanks for your words it really does mean alot

  • Hi Juggsy sorry to hear you are feeling so negative & down. You are young to have this condition. But by no means unique, there are many athletic young people who suffer from it.

    The good news is that you are in the system and will be monitored & treated accordingly. There must be thousands of people who have gone undiagnosed over the years, but we have luxury (with medical advances) of this being picked up sooner now.

    Best wishes Aly

  • Juggsy, life is not over just different. At 72 I still do everything I did before diagnosis. I have just completed (well almost completed) an extension to our house, I play in, and run a jazz band and in better weather still ride my bike. As somebody else here posted"you may be down now but the only way now is up!" We've all had the "why me" bit and come through and so will you. When I was in the military there was a saying when on long marches "never mind the distance, all you have to do is keep putting one foot in front of the other and you'll get there"!

  • Off subject slightly I've noticed last day or so my heart rate is quite slow, I've lost some weight but it's down near 60-62 even when I'm in work at nights.....I got a bit concerned by this, could it be my "borderline" interactive thyroid or af again....I feel ok otherwise

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