Constantly on my mind

Hi all I've been here a while browsing, but now I'd like some answers that I don't seem to get from doctors.

I've had paroxysmal AFib for 14 years had 1 bout that required hospital attention years ago and had an ablation in 2007, in march I was hospitalised 3 times for 3 days each time before my rate would come under 100bpm, in the last 10 years no meds now I'm on bisoprolol fecainide and rivaroxaban, but I am so out of sorts finding a walk upstairs is like climbing a mountain and brings in angina pains, which I now have a spray for and having a angio ct on 10th June.

My thing is with a 220bpm I could still function and run upstairs to change before knowing I had to go hospital for digoxin, but with it only being 70bpm now and all these drugs I'm fed up with all the pains I feel sure the bisoprolol cause, my doctor said I could lower the dose for a week and see if it made a difference, it did the AFib kicked in again.

I've asked for ablation even though I found it the most horrendous procedure ever since I feel I've had 10 years pretty much with only few second AFib flutters I'll do anything to not feel like I do daily, but I've been told by cardiologist I'm too long into the disease??? for it to work and that I stay on all the tablets to protect my heart ( echo lady told me I had enlarged atrium) the last consultant told me that was probably because I was in AFib at time of doing it. I do also have a mild mitral leak.

So what's the truth please?

Am I to be like this permanently or is it nhs costs? I'm really struggling at my equine grooms job and with the mental effects it's causing me, I know these drugs are keeping everything at a steady pace but all the side effects are causing worse problems.

I should ad I'm only 46 was fit as a fiddle if a little plump, but now feel 96 unfit unhealthy and mentally drained.

17 Replies

  • Sorry to hear you have been so unlucky and at such a young age.

    I would ask for a second opinion- have a new person to look at everything. Best to lose the weight as it does make a difference to all heart related things.

    Also have your medication reviewed as there are many alternatives. I'm hoping people will tell you on here how they have found different meds to work for them and you would have some ideas to put forward.

  • I can relate, I cannot tolerate the drugs bisoprolol was very challenging and rivaroxaban bed made me feel suicidal plus other terrible side-effects - breathlessness, extreme fatigue and pains in the legs etc

    I have had three applications over the is which were not successful but what I do now is just take medication when I have an episode although I have just had a pacemaker fitted due to the side-effects of Flecainide. This combined with metroprolol Will usually revert back to NSR With in two hours - 2 days.

    I have noticed that many people are on similar types of drug mixes

    I wish you well

  • I think you maybe need to get a second opinion re a second ablation as at your age this would make sense rather than drugs for the rest of your life .

    On the other hand you say you are a little plump? Weight loss and careful attention to diet have all been found to reduce quite drastically the burden of AF as well as a useful reduction in blood pressure in many cases. .A reduction in processed foods and meat. reliance on a more plant based diet with plenty of oily fish etc have all been shown to be beneficial. Obviously no alcohol, caffeine, nicotine and less stress are also recommended. OK I know the old joke. you won't live any longer but it will feel like it but seriously a lot of people have benefited from these changes.

    Regarding AF induced anxiety I an well aware of the problem we all face in this respect and can only suggest CBT or mindfulness as a crutch. I think most of us suffer perhaps more from anxiety than from the actual symptoms of AF sometimes.

  • Oh, how I sympathise!!!!'

    I do think that ablations have improved markedly after 10 years and that they are no longer the ordeal that you experienced. If you are offered one then you should seriously consider it, particularly at your age.

    Losing weight will help - and I'm also struggling with that right now.

    I am scheduled to see my EP next month and will have to discuss my future drug regime with him. Do I take a pip or do I wait for the AF to stop? Am I causing damage to my heart by letting the AF continue? What are the long term effects of these drugs? ( doesn't matter so much at my age but you are young! )

    I take my 2.5 bisoprolol at night as I can go into AF in my sleep. I think that it reduces its side effects during the day.

    Very best wishes.

  • Those are similar questions to ones I want to ask. 2 out of 3 times I've spontaneously-cardioverted without any intervention. The 3rd time I went to A&E within an hour and they gave me flecainade, so I might have self-cardioverted then too, if I hadn't taken the drugs.

    Is it better to give myself a chance, or PIP it sooner rather than later?

    Those first 2 times, might have been because I walked to A&E, so was it the walk? Next time should I go for a walk first, give drug-free solutions a go first, or prioritise getting out of AF?

  • @ Uscore. This is really chicken and egg. My pip is 100 flecainide. It is best taken on an empty stomach so I wait an hour. This also means that I can establish that the AF is on- going. One of my problems is that my AF is mild since the ablation 3 years ago. Depending on what I am doing I can often cope with it. BUT am I doing damage by allowing the fibrillation to continue?

  • There are a lot of other betablockers to try before ablation. Bisoprolol seems to be the worst one for side effects.

  • I should perhaps clarify my plump, I'm soft from 3 months of not working, not particularly overweight, I'm usually fit looking after 15 horses a day, but feel so unfit now in such a short time, I don't ever drink alcohol and limit my caffeine to 3 coffees a day always have since first diagnosed.

    I'm told I have primary paroxysmal af, but the last 3 episodes have taken 3 days of different drugs to reduce rate from in the 200s to under 100, but remaining in flutter and I did for 40 days continually, the day my cardioversion was to be done I'd reverted back to sinus. Is this still classified as ppaf ? Reducing my bisoprolol from 10mg a day to 5mg just at night I had 2 episodes that were literally just a minute or so long. I can deal with that. What I can't deal with is the reasoning behind no ablation, surely if I was 10 years clear from a long episode and off all meds then it's worth trying again?? I'm happy to stay on anticoagulant life long since I'd rather a bleed than a stroke, but whats all this disease talk and drugs that are affecting my life style, af has never caused me life changes. I'm now having to stop walking the horses out since that brings on what I can only describe as pain/ pressure in my chest neck and jaw, breathlessness and it feels like my heart wants to beat faster but is being blocked from doing so therefore causing these pains. What will happen if I just stop drugs and crack on, the only thing doctors have said is that I'm wearing my heart out, reckons I have a heart of an 80 year old. I think I'm doing more damage with every pressure/pain episode that I believe the bisoprolol to be blamed for.

    Sorry if I'm going on I just can't get my head round a fully functioning non drug taking af person now being a drug induced non functioner, (yes that is a real word I just made it up) 😂

  • best to cut the caffeine!

  • Zero caffeine could help, watch chocolate perhaps one piece only

  • I would really push to see a different EP. Unless there are things we don't know you sound like an ideal candidate for ablation. I had mine in 2013 and was a dawdle.

    If GP/cardiologist wont refer you, maybe you could see someone privately and then go back to NHS as many on here have done.

    Good luck 🍀 and don't let the b.....ds grind you down.

  • I had a similar problem. AIB for 15 years, with occurances once or twice a year. Then two years ago the episodes increased to one every two weeks. They were very symptomatic with chest pain and dizziness to the point I could not walk a few steps. I elected for an ablation because I did not want to be on toxic meds for the rest of my life. There were complications from the ablation with pericarditis and worse AFIB symptoms. So my EP put me on flecanide and toprol. My heart issues gradually improved, but I could no longer walk up a slight incline, my legs were so so tired I was wondering if I was developing another disease. My blood pressure was low, sometimes 80/50. Drops in BP were always a trigger for AFIB in the past and I panicked. Reduced the toprol to 1/2 and my symptoms were resolved. I had already discontinued the flecanide. Then I had a rebound effect from discontinuing the toprol with tachycardia and elevated BP. Right now I am doing pretty well, still no AFIB.

    I don't agree that an ablation wouldn't work for you. Here in the states it is being done for persistent AFIB. Find a good EP.

    I found that I had to taper off meds very slowly, over a period of months. Some doctors will say it's ok to do it quickly but I elected to shave a little bit off each pill like I said, over a period of months.

    Research shows that losing weight and exercises is really important for AFib

    Good Luck. Things can get better. They did for me.

  • I will definitely push it, I have this morning emailed my original cardiac consultant, so await his reply. I feel like I am being patted on the arm and told there there off you go.

    I am so exercise intolerant at the moment, but the glyceryl trinitrate spray is certainly working for the pain build up.

    Thank you all x

  • I am sorry you are having such a difficult time. I understand your profound desire to "not feel like I do daily". I suspect there are many of us on this site who have felt the very same.

    A couple of observations. Regarding heart rate: you can get in real trouble with prolonged, (days/weeks/?), heart rates above your physiological maximum HR. As we age, our maximum heart rate follows the expression, HR = 220 - age. So for me at 73 years, it would be 220-73=147. For you, 220-46=174. This is not hard and fast, but approximate. If you are above 200, that would be concerning. I urge you to get resolution on this. (You may be having atrial flutter. 24 hour Holter?)

    Regarding caffeine, a really cool meta analysis done in China of caffeine v heart rhythm resulted in the following: "It is unlikely that habitual caffeine intake increases AF risk," write Dr Min Cheng (State Key Laboratory of Cardiovascular Disease, Beijing, China) and colleagues in their study, published online January 6, 2014 in the Canadian Journal of Cardiology. (See Medscape: I take this to mean that some people can and others can not. Caffeine now seems to be off some list of triggers.

    Regarding ablation, I know there is a risk of complications, but in your shoes I would want to get it done. You are not able to do the activities that are an important part of your life,

    I am two weeks out form ablation, done for the same reasons, and doing well. And yes I'm down ten pounds since, and continuing, a good hedge.

  • Thank you for your reply, one of my discharge notes says paroxysmal atrial fibrillation the other says same with af/flutter.

    I've no idea what's what, I've lived in ignorance with my af for 14 years, as it's never bothered me before. Sometimes I wish Google wasn't around.

    I'm beginning to think it's lack of nhs funds that's preventing ablation. With 4 prescribed drugs each month it'll soon be my lack of funds :(

  • OK, atrial flutter, often with heart rates over 200, and atrial fibrillation share many features. Take a look on line at the Heart Rhythm Society web site, This is a premiere EP organization. Enter atrial flutter in the search box at the top of the home page. On the page that comes up, the second item down is a good description of AFL. The side bar of the article has pointers to things like treatment. HRS is also an excellent resource for people with AF.

  • Yay, been to hospital today I thought it was for my angio Ct but it was just an ecg and consultation, I have AFib AND flutter and have been referred back to papworth for ablation, I feel sure it was nhs costs preventing it before.

    For that person with WPW go for the ablation, get off those poisonous harmful drugs, if someone who has gone through a 3 hour ablation without sedation can almost be looking forward to the day, then hopefully you can pluck up the courage. Go for it !!

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