New to me - No longer in Control

Late 50's, single and was in very good shape.. Now out of control with lethargy and shortness of breath, tired etc on several drugs to combat the AF. Not use to ~not being very physical and active and now on the cliff of depression as I was diagnosed with AF a few years ago - Cardizem and Pradaxa cleared up all issues within a month, for about 18 months.. Now I have been in AF for more than a month and headed to my first, and I hope only - but reading probably not electrical cardioversion. Now on several drugs and have stopped all alcohol and limited coffee in the AM. Had to stop going down the rabbit hole of the internet reading about AF and let go as it is all so upsetting and brings on an anxiety attack. Hoping for some kind of resolution soon via my cardiologist.. Helps reading about others experience in this ...

19 Replies

  • Hi Rideronthestorm


    It's one heck of a shock finding out that big pump in your chest is not working as well as it should, and that your seeming invincibility suddenly comes to a juddering halt. I have to say I empathise, for me diagnosis was the lowest point in my whole life, and even reading and talking I still thought I was going to die and that it was the end of my life as I knew it.

    But honestly, that passes, and you do come through the other side to a recognition that yes life has changed, but that this mongrel condition can be kept under control, and yes you will have to change your lifestyle a little, but not too much and that you will be able to live an active (perhaps a little less so) and fulfilling life for many years to come.

    You mention cardiologist, it's really important that you see the right type of specialist and that's an electrophysiologist, and not merely a cardiologist, I spent two years pfaffing around with a cardiologist before getting properly transferred to an EP and the difference is dramatic, so please insist on seeing one now. Cardiologists have a more "gung ho" approach to AF in my experience.

    Plenty of stories on here for you, and ask away anything you like, we're a cheerful and helpful bunch (except when I'm grumpy)

    Be well


  • Thanks for the information, I am trying to come to terms with AF, but it is not easy, I am 75 and apart from reflux have had no serious health problems, so when the AF struck I was certain my heart was about to explode.

    Fortunately it did not happen.

    Am making adjustments to my schedule of exercises and alcohol intake, the latter seems to ttrigger an "attack" but time will tell

    Thanks again.

  • I think a lot of us have felt at some point (or every now and then) that things were going irrevocably downhill, but do please feel that there are many good paths forward.

    It certainly makes us live more healthily! All those things we now avoid, like caffeine and alcohol and plenty more.

    I do hope you'll get sorted swiftly and perhaps the replies you get here will make you feel less despondent in the meantime. We mostly have gained some control over AF one way or another.

  • Hi, May i suggest you read the posts from srm grandma , who has managed to reduce the symptoms significantly by diet.

    I hope that when you get to see an e.p. you will be more optimistic.

    good luck

  • Hello Rideronthestorm

    I can only agree with the other replies. Once you're over the initial stages, and have learnt more, the trauma does ease. This is a very positive site so maybe stick to reading just this for a while? Support from people who really do know how you feel is valuable, particularly at 3am!

  • Hi Rideronthestorm,

    Many on here felt as you are feeling now, it is such a shock to find that in spite of all that healthy eating and exercise your ticker has let you down. I was almost too scared to do anything after diagnosis but, as the others have said, this feeling will pass and your situation will improve. Keep reading on here and follow Ian's advice ( which is always excellent even when he is grumpy!).

  • Hi Rideronthestorm

    I'm in my late-ish 50s too so I know where you're coming from. It is a big shock to the system but as Beancounter wisely says you do get to the point where you can see, to coin a phrase, light at the end of the tunnel. We may not be able to do as much as we could before, but we can still do plenty :) I really recommend this site, the people here are so helpful and kind...


  • Rideronthestorm

    I can so identify with this, so please don't minimise any feelings you have; rage, sadness, lack of understanding from all the healthy and fit people you've been hanging out with. Allow yourself to mourn and take your own time to come round to your new life, because that is what it is, however you want that to be. For me this year started with the blue light admission to hospital in January leading to diagnosis and trying different treatment options (still ongoing), no denying it has been traumatic and this site and the people and posts on here have helped. I think the lack of control; loss of independence and the challenge in my belief of the strength of my body and mind have been the biggest obstacles. This end of the year I know that this is in my mind not my physical body, even if that is playing me up. It is your core, your spirit that is strong and will work out how to live well now and you have not lost this. Given the opportunity my friends and family have become closer because of this, I have learnt to prioritise properly (after 50 years!) - I get it now if I have limited energy what is the most important thing to do first/devote my energy to? clue it is always the people and relationships in life it is never the housework :-)

    Take care and talk to yourself as you would your best friend if they were feeling down or vulnerable.

    Following a recent post I now realise that most people with AF are awake from 4am should you be feeling alone with this.


  • I have multi problems one of which is AF which was diagnosed in 1992 I have had a few treatments and procedures many ups and downs but always try to have PMA.

    At Best it can be fixed at worse it can be controlled.

    Be well

  • Hi RiderontheStorm

    A familiar story much like mine and many others. Go see an EP (Electrophysiologist), not just a cardiologist. They can also call themselves Heart Rhythm Specialists. They are cardios that have gone on for further training in heart electrics and only they are the specialists. Ask for a referral.

    Even if you are under an EP, it could be you're on the wrong drugs for you. If they are not working, i.e. you feel pretty normal, then say so and ask for a new one. Phone or email your EP's secretary. You might need rhythm control drugs like me and many others. I have had to go through quite a few to find the ones for me and I'm now leading a normal life including cycling and physical work.

    Know how you feel. I went from being fit and active to a very old man in months. It is very depressing but now very different I got the right drugs. Eventually I may have to go for another ablation, hope so. Same for you maybe? Not a problem in my books.

    Good luck and let us know how you get on.


  • Ask your Cardiologist for a referal to an Electrophysiologist. This is the normal route to the person who can decide your most appropriate treatment. This may well be ablation. Like so many of us you will get to the stage when this is the opportunity you will be thankful to have.

    As others have indicated, there is life with AF but it's different. I hate being unreliable because I cannot guarantee how I'll be feeling. It's all about compromise. It could be worse and it does help to realise that it's unlikely to kill you.

    Very best wishes

  • Hello RiderontheStorm, I rhink all we AEFFERS understand how you feel it all becomes totally overwhelming but hopefully in time things will get better. Find a good EP, I rang the AF society to find out who was one in my area and I was able to see him pretty quickly ( went privately for first appt. was worth every penny) I think Happy Jo expressed my sentiments exactly you need to be able to control your mind as much as the AF. Hope things improve for you soon.

  • Hello RiderontheStorm

    Welcome to the forum - the right place to be for knowledge, help and understanding. Diagnosis is a real shock and having your first lot of drugs fail is so hard to deal with. Many of us have had multiple 'goes' at getting our condition under control and that involves the correct drugs and the right specialist(s). None of it is easy-peasy, especially the waiting and wondering if this time it will work. But there is light at the end of the tunnel and AF can be put where it belongs - in the background of your life.

    There is a superb care pack available from CareAF here: It gives excellent advice about all aspects of AF and it's free. The diet section is particularly interesting.

    This time last year my biggest problem was trying to decide what colour to have the house painted in Spring - then came PAF diagnosis. I couldn't walk uphill, was scared to go out because of attacks, was frightened out of my wits, put our family financial affairs in order as I was convinced I would die and saw a cardiologist such as Ian describes. After 3 tries on drugs and changing to an EP, I have got my life back, can walk all over 'my' mountain and feel that I am managing AF, not that it is managing me. And the house still needs painted!

    There are many people on this forum with experiences of all treatments and aspects of AF, always willing to help and advise, so do keep posting and let us know how you are.

    Best wishes, Finvola

  • Thank you all for the best wishes on this new road and that there indeed is a future ahead to look forward to. The path may be a little different that I had planned but everyone seems to get something medically bad and this could be something worse. We deal with it, or as we said in the Marine Corp, Adapt, improvise and overcome.. :^)

  • I can only agree with the comments of the guys on the forum RiderontheStorm. My AF kicked in two years a go, but after the initial diagnosis the medication I was on controlled it pretty well. I pretty much went back to normal and tried to ignore the damn thing. It didn't last too long, as the medication caused me other issues. They really did change my mood and I was for the first time in my life in a place I didn't like. I gave up just about all my hobbies and felt sorry for myself, but things started to pick up and now I only have to worry about AF. As Jennydog & Koll state, try and get an appointment with an EP. This was advice I pretty much ignored at the beginning of my AF, but since I have seen an EP and we have a plan. I may have to to rethink things if the plan fails, but where there's hope. Good luck with the Cardio version.

  • I'm in my early 40s and was very active until my diagnosis in Nov 2011. Initially I saw a cardiologist who put me on Flecainide for rhythm control, not good for me and caused a lot of problems. After that Metoprolol and Perindopril for rate control which worked for a while but left me feeling fatigued and with no tolerance for exercise. Meds do work for some but didn't for me.

    Being referred to an EP was the best move ever. I halved my Metoprolol, went on to Amiodarone in preparation for ablation which I had 2 weeks ago. Feeling okay and a lot better for being off Metoprolol. It will take a few months to know if it has worked but I'm focussed on getting off all meds in early 2015. If I need another ablation I will have one.

    EP's specialise in AF so are best placed to help guide you, because it's about the patient and everyone is different.

    I wish you all the best and the forum is always here for support and advice.

    Kind regards, Robert

  • Well I am back from the Cardio Unit and having my first TEE Cardioversion yesterday - and it worked! Thankfully I had no heart damage from being in AF so long. I walked out a few hours later back in normal sinus. Dr. said I have to be on the arythmia drug & blood thinner for about 6 months. I take enjoyment from the simple things in life but never more than having a steady heartbeat. No one on staff agrees to what may trigger AF but I will scale back alcohol and caffeine just in case.. :^) Thanks to all for your imput..

  • Hi Rideronthestrom

    Very pleased for you, but please remember that Cardioversion is almost certainly not a cure, much more likely to be a temporary adjustment and that almost inevitably your AF will come back especially if I may say at your age. Seems to vary between hours and months, but unless you are very young, and usually driven into AF by over-exercise then it would seem that a CV will only ever be a temporary fix.

    However it is a great indication that your heart can go back into NSR easily and normally and bodes really well for any future treatment plan. And yes scaling back on triggers will help.

    Be well


  • Thanks Ian, I am quite aware of the often temporary nature of a cardioversion, but I have hope that it won't be going away anytime soon and lead me down another road... Thanks.

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