Will this ever get better

Hi all.....My AF is there all the time my heart rate is is always between 95 and 130 and I feel rotten most of the time. I have had two cardioversions the first lasting six months the second less than 2 months I felt so good and normal when in NSR and could do everything I used to do. Does anyone else get bad symptoms? I sometimes think it's just me! My breathing gets very wheezy and I can't walk very far without getting out of breath. I avoid stairs if at all possible although coming down stairs is not a problem is this normal for AF sufferers? I am 52 and taking Bisoprolol 5 which was cancelledmg and Warfarin. I had an appointment to see an EP on 24/12/14 which was cancelled but have another one (fingers crossed) for the 9/1/15.

I am beginning to worry more now... have been of work for a few weeks I just can't do it...I love my job and there is no way I would stay off......but I just can't manage it. I'm okay pottering about at home but I am very limited is this normal?? It scares me...I feel like I'm never going to get better.

Does anyone else out there feel like me or am I'm just being silly! I try really hard but my body just won't let me most of the time.

Thanks for listening to me rant on.

27 Replies

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  • Hi Abihel - You are certainly not alone in what you experience. Like you I have months when my heart is racing at a rate like yours. I think I only had 7 months last year when my heart was normal. I understand totally how tired and dejected you must be feeling. I have never had such a low period in my life as when my heart raced constantly between September and November of last year, what made it worse was that a few months earlier while visiting my EP (I've had two ablations) I was told that my heart was now so heavily scarred that they were unable to do any more for me.

    Like you walking anywhere was a trial for me and I quickly became exhausted. When going around the supermarket I was glad of the support of the shopping trolley and I couldn't wait to rest in my car. I started to wonder whether I would end up with one of those disability scooters and felt extremely sorry for myself.

    I was booked for yet another cardioversion last November, but was overjoyed when my heart suddenly reverted to normal sinus rhythm the day before I was due to have the procedure. Since then I have had a wonderful period of high energy. I'm doing long hilly coastal walks again and feel full of joy. I'm just so delighted that my heart reverted on it's own - good old heart!

    My message to you is not to think that this is how you are going to be for ever. I will never think that again now. Try to carry on with your day to day life as well as you can and do your best to get out and about. I'm convinced that sitting still makes AF worse, also try not to sit slouched over. Aim to eat as healthily as you can and avoid cakes, biscuits, sweets etc.

    Don't feel guilty about not being able to work right now. I for one one know that it's impossible to do much that is physical while your heart rate is at the level it is.

    If you need any further support or advice please private message me (click on my palm tree icon and send a message).

    Chin up, you won't feel like this for ever.

    Jean

  • Thank you so much Jean for taking the time to respond I really appreciate all you said xx

  • What a lovely message Jean

  • It's 9am Sunday morning and as yet nobody had replied to you so this is to say "Hi."

    You are definitely not being silly. So often I have felt like death warmed up but as I have looked to be the very picture of good health I have received no sympathy whatsoever.

    In full blown AF you cannot possibly do a day's work. It's so hard for anyone to understand how rotten it makes you feel.

    I hope that the EP will be able to treat you, possibly with a change of medication initially.

    Seeing an EP proved to be one of the best things that I ever did. Keep a record of your symptoms and medication to show to him.

    Very best wishes.

  • I really appreciate you writing back to me and so good to talk to someone who really understands. Thank you from the bottom of my heart. xxx

  • Hi and welcome. Thankfully you are about to see an EP and no doubt if he hasn't seen you before he will want to do some more tests but the good news is that an ablation will probably be offered and I would take it like a shot. OK there are risks but much over stated mainly so you can't sue them if it does go wrong. lol. Far better an ablation now and possible a second a year or so later than a lifetime of drugs which will make you feel dreadful Bisoprolol is the classic make you feel worse than the condition drug and doubtless the cause of a lot of your symptoms so with luck he may try a rhythm control drug such as flecainide or propafanone . Cardioversion is seldom permanent but at least it proves that you can be put into NSR so that an ablation could be the solution. At least you are on warfarin so your stroke risk is reduced to a more acceptable level and could mean ablation doesn't have to wait so long.

    Read all you can from the main AF Association website so that you can discuss the options rather than just turning up as a customer.

    Bob

  • Bob - sorry to see you go down this route again. There is enough evidence on this site to show that ablation doesn't work for everyone, even after three or four attempts. As for the drugs - Bisoprolol 10 mg for over two years has contributed to my increased ability to exercise and I have noticed no side effects at all.

  • Then you are lucky as many people are wiped out on far less than that. Please read my last line.

  • Yes, I had already seen that. When I first came on this site, it seemed that the strong message from some people was take Warfarin and have an ablation. As you have often pointed out, we are not medically qualified and there isn't a one size that fits all where AF is concerned. I have previously been on two "dreadful" drugs - Warfarin and Amiodarone. They do suit other people though.

    To go back to the original question: what I would personally want to know from an EP (and there are no current plans to see one) would be some percentages about success rates at first, second, etc. attempt and how this applied to me personally; also whether I could have the procedure under GA and via a route other than the groin. These two latter points, I accept, may be of more importance to me than to others.

  • In the new to be published AF-A book on ablation which I recently proof read there is reference to sub clavicle access for ablation although I have never met or heard of anybody having that. May be useful for you to know that though.

    Bob

  • Not taking sides here but while appreciating Bob's mantra of 'AF won't kill you x 3' it is worth remembering that heart failure, which is what you get if AF is not adequately treated, WILL. Slowly and very painfully. So the cardiologist/EP has to think of that when considering treatment and the patient has to be aware of it when suffering side effects of medication or taking the small risk of an ablation going wrong. Stroke is not the only bad outcome of AF.

    I hope this does not offend or upset anyone but I feel strongly about it for personal reasons.

  • Absolutely. No offence taken from any reasoned points. Discussion is after all a way of finding solutions.

    Bob

  • Well I was having not a bad day till I read your quote about heart failure now I feel very anxious thought I was doing not bad coping not now and why is it rhythm control drugs like flecanide don't put you In sr permanently if thats what their for karen

  • Hi Karen, I am sorry that I upset you. I was really commenting on the discussion between Mrs Pat and Bob and trying to be tactful which is not my best thing.

    People get very worried about the rhythm of their heart because it feels so awful specially if they have PAF but the more important things are rate and anticoagulation so your medical team will prioritise those. So I'm thinking that arguing about the merits or otherwise of ablation are a bit pointless at this stage unless the medical team cannot find any other way of reducing the rate.

    As for Flecainide, like other drugs it seems it works well for some people and not for others. I take Propafenone for rhythm but when my heart started racing I had Diltiazem and an anticoagulant added. The diltiazem helps to keep my heart slower but if it fails I can have a cardioversion straight away because I am anticoagulated. And if none of that works I have been promised an appointment to see if I can be helped by an ablation.

    So you probably don't have anything to be anxious about unless your heart is frequently running too fast and if that is the case you should be making a fuss!

  • Would agree with you here Buffafly. I have suffered with a one - off bout of heart failure due to AF & it was probably one of the worst periods of my life. This was the main reason I agreed finally to go down the ablation route. It has proved to be quite eventful..........

    Sandra

  • I think the way Barry Manilow put it is perfect. Don't ignore AF. If you do then it is a killer. I think that's why Bob is so passionate about treatment.

    2 years ago I had my first episode, followed by 6 in the last 5 months. I converted naturally the first 2 times, chemically converted successfully twice and now nothing but DCCV works. I am therefore now very seriously considering ablation. If drugs work for people I'm thrilled and we have to manage our AF in the best way that works for us.

    I genuinely wish everyone well on their AF journeys

    Nige

  • Thank you x

  • Jeanjeanie - I read your post and feel your discomfort and anxiety. I am sure that a solution will be found for you, whether that be by ablation surgery or through getting the right drugs. I have had several ablations, one of which gave me ten years relief. It's worth a shot in my view. See what your EP says. Know that you are not alone - we have all been there in varying degrees. I am thinking of you and wishing you the very best.

  • Thank you David I really appreciate you taking the time to respond x

  • I had ablation last year and feel 100% better. A recent Ecg showed AF has returned but seems very mild short bouts. I am unaware of it, no symptoms and feel fine. I am being monitored and may have a second one. Prior to the ablation I had episodes 4 or 5 times per week lasting for 6 to 10 hours so I was pretty wiped out most of the time.

    So my advice would be to explore this avenue as if it works it is a great solution. I know its not for everyone but certainly worth discussing with your EP. Good luck

  • Thank you x

  • Ablation or not?? Reading everyone's comments daily helps me come to terms (mostly) with my PAF but I've been avoiding making the decision. My episodes have increased gradually to around seven a month but they usually only last for a couple of hours -very irregular heart beat but not fast. Most of you who have had ablations report that your 'angry' heart takes several months to settle down but your post ablation symptoms seem worse than mine are now! I'm not too keen on making it worse before it gets better, if you see what I mean! I'm paying to see my EP privately next week in Leicester as I've only seen his team in Outpatients, never him, and my last appointment in December was a complete waste of the four hour round trip. Should I take the plunge or plod of with medication........

  • Sorry to hear you're not feeling to good. I am a little surprised to note you are on warfarin as you are only 52, I take it that you may have other heart complications as well as AF.?

    I too feel tired sometimes (1.75mg bisoprolol), I had my annual cardio/EP visit at the QE Bham last week, said following my 24 hr tape that my heart was fine and healthy, no ablation needed, no warfarin needed and to stop if I wanted to my daily asprin, although the health benefits for male over 50s taking asprin was mentioned. I mentioned should I be on warfarin given what I'd read, told categorically no, not needed.

  • Your feelings are , shall I say, normal. When my AF first came on I spent 5 weeks at home and I also loved my job. What I did not appreciate at the time was that the prescribed drug Sotalol was just a rate control drug. After further discussions (complaints perhaps) I was put on a rhythm control drug. Its the poor rhythm that is so mentally trying and but for the change of drug I doubt whether I could have returned to work. My AF was suppressed for around 4 years but started getting breakthroughs and again I could do nothing and felt rather stressed, frightened and incapable with lots of negative doom laden thoughts.

    When you see your EP ask about rhythm control drugs because you are highly symptomatic and the relief using the right drug for you would be like a huge weight being taken off you.

  • I will do that Jumper...thank you x

  • Hi Abihel ! So sorry you are having problems , particularly with Bisoprolol. I have been there & wholeheartedly agree with Jean about how very low it makes you feel. I also had the same experience with the supermarket trolley .... felt about 90 ( & probably looked it ! )

    However I am pleased to report that since I have stopped taking Bisoprolol I feel better than I have in years. I certainly couldn't function outside of the home on 5mg. We are all different & Mrspat is indeed fortunate if she has no probs taking 10mg daily. A GP told me that she has a patient who can't climb the stairs on 1.25mg!

    Hope you get a good response from your EP this week.

    Best Wishes

    Sandra

  • Thank you so much for your reply...I struggle going up stairs and use the supermarket trolley to lean on. I keep you informed how I get on this Friday. x

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