PAF ruining my life

Hello I have been diagnosed with paroxymal AF.Had laods blood test ultra sound etc all normal but it is ruining my life .I am on flecanide 50 mg twice daily and slozem 180 mg once. Have seen Prof Schilling who said to try Cognitive Therapy. I did for 6 months but now I am off work constantly terrified of every palpitation. I don't feel like myself anymore.I am not a weak person. I have brought up 3 children 2 with autism I can be very strong but this is too much for me

26 Replies

  • I have the same. Have nor slept well for 6 weeks since my first episode - its a life changer.

    It will get better - check your pulse regularly and this will help ie your not in AFIB

    You have to try and ignore it - life goes on. It won't kill you but you need to be aware when it happens.

    I to am seeing MR Schilling next week - is he any good?

  • Is the Prof good?

    Google him and make your own mind up, he's a trustee of the AFA and a medical advisor to it.

    And he rides a Brompton so he can't be all bad :)

    Be well


  • Very good

  • Hi Vivijane

    It's a bugger this AF and what's worse is we are all different and we all suffer in different ways.

    All I can say and I realise you won't yet believe me is you do get used to it, you do begin to work with it and live with it and not because of it, and I know that seems a long way off at the moment.

    I remember being diagnosed and thinking it's the end of my life as I know it, all I can say is over two years later it wasn't and it isn't and it won't be for you either.

    What has the Prof offered you in terms of treatment, is he suggesting an ablation, or something else, I suspect he has hatched a plan with you, and perhaps that plan needs revisiting?

    The slozem (diltiazem) will certainly slow you down a little, as is slows your heart it also can make you tired, do work with the Prof on drugs, different ones have different effects on all of us and sometimes changing them can help.

    But above all we know for certain that worry is a trigger, and I know that's a horribly circular argument, in that you worry about AF and it actually causes it, but that's probably why he's suggested CBT and that can be effective for many AF sufferers.

    But you know already you are strong no-one copes with two autistic children without being strong, and I am willing to bet at the outset of that you didn't think you could cope, but you have and you're here now.

    This will pass, you will feel better and you will become more aligned with your AF and learn to cope with it, and yes it will take time.

    And we are here for you, for those awful nights, cruddy mornings and really bad days, come here and rant and rave and let it all out. This community will absorb, rebound with kindness and consideration and support you through those days. It's our main purpose.


    Be well, and keep talking


  • Thank you

  • Hi Vivijane yes I can understand what you are daying. My sister underwent having a pacemaker inserted, I remember thinking fpr a while, how it had changed her personality. Since I have been diagnosed with Paroxysmal AF I can understand how she felt.She is now back to her old self. I think its because the heart plays a great part of keeping us all going, it is a shock when anything goes wrong. As Ian said just be guoded by your consultant and inform him if you are not feeling well on the drugs ypu have been prescribed. You will soon learn to live with it and get your life back.

  • Ian has really said it all - in particular that it takes time. The more you live with AF, the better you know your own brand of it and after a while you will begin to have the upper hand, know how to cope with it and be so much less fearful. You can get back to being who you really are. You're on a low dose of flecainide - many take 100mgs or more twice daily - and AF can be dealt with in a number of ways. Just find what works best for you.

  • Thank you

  • Thanks will look

  • Very interesting articles regarding magnesium Bigleg especially the link with statins which I have been taking for many years - definitely going to give the supplement a try.

    Best wishes Ally

  • Sorry to hear your concerns. Firstly, Prof Schilling seems to be one of the best from the comments on here so that's good. Secondly, it is tiring as you work out what's best for you and check with the medics first e.g. I was still getting episodes on Flecainide 50mg twice a day and discussed with my cardio increasing to 100mg twice a day and that worked.

    For your anxiety, I can only say what worked for me which was reducing stress on all fronts i.e. business, social, domestic, exercise and strangely the changes helped the most. I am currently doing more meditation (or mindfulness as it is often called now), exercise and prayer and rather than a chore it has become a positive improvement to quality of life.

    Good Luck and thanks to Big Leg for those Mg links; Mg supplement mixed in with other stuff (brand Nutri Muscleze) helped my sleep pattern.

  • From my personal experience, the only "cure" was having a abalation, not therapy, not vitamins or any medication I was prescribed, not life style or change of diet, I tried them all was false hope, maybe it worked for some not me, we all experience stress and anxiety...who doesnt , its always going to be there as long as you live, it doesnt mean you cant change your circumstance a little to lesson some of it, medication wont fix it

    I also firmly believe doctors, consultions etc will put you on medication for however long rather than offer you an abalation, I had to fight for two and half years to get mine, I had ground to a halt my life had become unbearable, my business folded because I couldnt work, if I had been a cash paying patient (rather than NHS)

    I would have been offered abalation within weeks !, thats a fact of life I learned the hard way

    I think thats the bottom line, take note people I'm not making this stuff up or looking to make any political statement, there all a bunch of over paid wasters,

  • I think you may have been unlucky and some doctors consider ablation a risky move and are reluctant to recommend it. I was offered one before I had been diagnosed with AF. I just had paroxysmal tachycardia or so it was thought.

  • I totally agree Rellim. When I was diagnosed in 2004/5 I was offered ablation very early on (NHS) and it was only my own reluctance through ignorance which delayed that till 2006. The second and third ablations each a year apart finally sorted me out but of course results have improved by leaps and bounds since then as it was still very new science , only having been around for about ten years , and many more EPs are now trained and changing people's lives.

  • Maybe I was unlucky and yes its a risky to have done, but so is not doing anything and being on medication for who knows how long,

    I didnt refer to how much medical staff are paid, a lot of people start work at 5 or 6 am for our benefit and use there expert skills... just ordinary folk who get paid to do there chosen profession..along with medical staff of all ranks.

  • Some feel that the medication route is a good start, but I'm not one of them! I agree with you.

    I think we're wandering off topic here - sorry vivijane.

  • Vivijane - have a look at a website called it offers 10 free sessions to work through and teach you Mindfulness meditation - I'm finding it really helpful as like you anxiety about the whole condition of AF overwhelming and desperate at times - Good Luck - Cathy

  • Thank you

  • good luck with the mindfulness meditation, having praticed yoga for the past 10 years..I cant say that "mindfulness meditation" would appeal me, let alone "cure " the Af...

  • Hi Vivijane. Most of us here on this site have been though everything that you are experiencing now and have gone through the same dark thought process on initial diagnosis. BUT its not the end of the world, just the start of a new one living with this condition. 10 years after it first appeared in my life I am still skydiving each weekend and working in remote areas of the planet for long periods of time far from any kind of medical care. Its going to be a long journey for you but with good medical advice and the correct medications FOR YOU and possibly some lifestyle changes you will stop feeling your pulse every 2 minutes and live a great life. Best of luck.

  • Agree with vivijane here , not sure what has happened to my life the last few months from total lack of social life to now having to had taken time off work.

    I to have had to endure many personal obstacles over my lifetime (55 now) but nothing as debilitating as this AF.

    Each time I seem to have accepted its impact on my life it comes back harder and more severe, this weekend has finally ended up in AF for almost 24hrs which this evening could hardly climb the stairs without being totally breathless and fainty, I could of run my stairs any amount of times a couple of months ago, and for the first time from being diagnosed I also had to miss golf today.

    I am even starting to feel guild about this affecting my wife, children and friends, as I am becoming so down lately, and bloody miserable.

    WHere does this all end, even looking ahead to an ablation does not perk me up, that pretty much leaves you in limbo anyway for months afterwards and possibly even longer as per posts on here.

    Sorry all if to much of a doom and gloom merchant, but I am really struggling here.

    Perhaps some reality check can help me put some perspective on a really tough period and tougher times ahead on a personal level.

    I know there are worse things that can throw your life off kilter, but in moments like this shitty weekend I can't see beyond that presently.

  • I would encourage you, MickN to see the positives of an ablation. It does not have to be 100% successful to bring about significant improvement. An opportunity to cease filling oneself with powerful drugs like flecainide is a hugely uplifting benefit.

  • Mick

    I spent (still sometimes spend) considerable time and energy railng against it because it is simply awful. It affects everything and not many people understand, they seem to think it is like CHD and if only you got a bit fitter you could beat it. The people here who have had ablation work for them (and it has a very good record 80%+) seem to have the best quality of life restored. I know it is what I hoped for. Failing that you have to do something about the stuff you can do, accept the stuff you can't and hope you can tell the difference (I'm not religious I'm not asking any deities to decide for me). Even without ablation it is essential to work closely with your medical team and galvanise them to get the best treatment plan (drugs) for you.

    I've taken redundancy as I couldn't carry on and am far from well, nearly in tears on Saturday after another doomed attempt to restore some part of my 'old' life failed, home by 5pm popping Warfarin whilst the rest partied on. It is hard to rebuild your life but I truly believe that the only way to deal with it is firstly accept it (not as easy as it sounds), make your own decisions about treatment based on what you want and create a new life.

    I have been incredibly mardy about; it despite having friends who are in wheelchairs my age who have had life limiting conditions hanging over their lives for years. My strongest ally has been my sister who has had life long, at times life threatening asthma, which I have conveniently ignored.

    I am mortified by my lack of understanding and compassion for others, that is something I can do something about. I still feel sorry for myself and scared of how I will get a job and pay the bills with the incapacity it creates but in my more lucid moments am just very pragmatic and know I have to just get on with it, deal with it.

    The more you wrestle some control (mentally equally important) back the more chance you have of feeling like yourself. It doesn't happen overnight and it's not a constant, everyone has bad days/weeks (ok - I had a whole bad year last year).

    Please do keep posting and venting on the site, as you'll find that friends and family soon get bored of it and we're all dealing the same and won't mind.

    I hope that today is the start of a better week for you.


  • Thanks Jo

    A better today, albeit I did not return to work as was planned, my AF episode which finally stopped at 8.30 thismorning, however was completely knackered so work was not an option, considering what is to face when I return.

    Plus side attended my scheduled appointment today with my EP confirming my ablation date set for the 17 February, downside means I start on Warfarin today, but, eh if that is the price to pay for some from of QOL back then game on.

    Being part of a research program means the pre and post care seem excellent, and my EP Is so confident in his ability on ablations sure I am in goos hands.

    Have you had an ablation??

  • I have Mick on 8th November, it was unduly complicated and I go back for my 3 month review 6th Feb. I weighed up the options and it seemed the only reasonable chance for return to a near normality (and hopefully drug free). I remember this time last year my cardiologist describing it to me and being horrified but I also remember him telling me Tony Blair had had the procedure. At the time I wondered what his point was; in hindsight I get it, he meant if this (AF, heart rhythm issues) is your problem and you have the choice, an ablation is the answer. I think a lot hinges on people's individual experience of the severity of symptoms but most people seem to know when for them it is the right choice and the right time. You seem to be making rapid progress and have made your choices so I hope that it all goes well.

    Take care.


  • Thank you

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