So disappointed AF back for second visit

I know I shouldn't be disappointed as there is worse things that could happen to me but I still had a little cry last night when the episode started at 8pm last night out of nowhere. Had my first episode in Dec 14 diagnosed in A&E. Am on Apixiban but nothing else, I was on bisoprolol but had to stop as my pulse was 38-40, was advised to use it when AF started. I took one tablet as soon as it started and although I stayed in AF for 13 hours it slowed the heartbeat but pulse still all over the place. Didn't know whether to go to hospital or not but just lay down on bed for rest of night but didn't sleep as I was so worried. I went to Dr this morning, AF was still there in the car on way but guess what, it wasn't there when I went in to see Dr!! I felt I coped well when Dr said I did the right thing in not going to hospital, not taking anymore Bisoprolol at the present time as it upsets my stomach also lowers my blood pressure and pulse too much. I feel weak and feel like I am waiting for next episode to start. I am sure I will get my confidence back again, hope so. Best wishes to everyone.

28 Replies

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  • I have been told several times by relief GPs that I should go to a&e whenever AF occurs. I have never done so and I have learned to cope until it's over. Ideally I can sleep it off. If the heart rate was abnormally high or I had pain then I would certainly head for a hospital.

    Have you been referred to a Cardiologist? Mine referred me on to an Electrophysiologist who carried out an ablation. You are lucky to have had an early diagnosis and to be properly anti coagulated but as your AF is likely to get progressively worse the case for early intervention may be warranted.

    Best wishes

  • My understanding is that paroxysmal AF does not necessarily get progressively worse, especially if it's vagally mediated. In fact, I read that vagally mediated AF rarely, if ever, becomes permanent. Some of the drugs however can make it become more permanent. Doctors are absolutely in the dark about why some people with normal hearts get this. People like to think the doctors know all about it, but they really don't. Neither do they know why people with structurally normal hearts get the ectopics and missed beats which can drive you crazy.

  • Petalline, I don't suppose you can remember where you read this or which drugs?

  • Hi Bagrat

    I thought it was fairly well accepted that anti-arrhythmic drugs are not all that they could be. I will find some references later and post to you.

    I will also find the refs to the info about vagally mediated lone atrial fibrillation. As I understand it, those with vagally mediated AF usually have structurally normal hearts (thus the reference to "lone" AF), since AF in those with underlying heart disease is usually adrenergically (as opposed to vagally) driven. I should add that people with normal hearts can still get adrenergically mediated AF and I don't think there is any sinister reason for this. People with normal hearts often get a mixture of vagally and adrenergically medially AF.

    My mother was given digoxin for an irregular heartbeat (?AF to start with, but definitely AF after a few years) and went from being told she had a structurally normal heart to having severe mitral regurgitation which, despite surgery (which was left far too late) affected her greatly and shortened her life. From what I've read, digoxin should not be given for vagally driven AF as it is vagotonic (ie increases vagal tone which is the last thing you need if your vagal tone is already too high). This is recognised now by scientists but the trouble is that not enough attention is given to the cause of the AF. Obviously often they simply don't know its cause. I don't think digoxin is used so much for this now but the available anti-arrhythmics don't sound too promising either.

    There is a lot of evidence to support what I've written. The medical profession know very little about the autonomic nervous system yet it is this system that drives our whole bodies ncluding our hearts. Who knows - maybe I am wrong, but I feel modern medicine is grappling in the dark.

    I will find those references for you. Please excuse me if it's not today but I will respond asap.

    Kind regards

    Petalline

  • Thank you so much. I have assumed my AF is vagally mediated as I have only had episodes at night or in the early hours and prior to diagnosis I had lots of problems with bloating, nausea abd pain etc. Have been on Flecainide for 4 years and tolerated it in spite of my previous GPs comment " Well....it's a dirty drug but if it suits you...." Surprisingly ( or not) it has helped with abd. symptoms but cardio not interested in that as "not my specialty"

  • Hi

    Please do ask your GP about being referred to a heart rhythm specialist an Electro physiologist (EP); they are not just for ablations if you feel that you are not symptomatic enough to need that (or ready for that step) . They can also prescribe other drugs - anti-arrhythmic drugs (Flecainide and Propafenone are two commonly used ones) and negate the need for a beta blocker which is only for rate control (as these are making your rate too low).

    Take care.

    Jo

  • Your experience sounds very familiar in the sense that I used to get very depressed with the increasing number of episodes I suffered. At the peak it was around three a week each lasting upto 20 hours. (I never considered going to A&E).

    My GP referred me to a cardiologist and it took a few weeks but eventually the mix of drugs was fine tuned and the number of episodes decreased. I also decided to stop feeling sorry for myself and change a few things to help myself instead (lifestyle, diet, weight, alcohol etc.) I also started to take a magnesium supplement which I am convinced has had a beneficial impact.

    My last episode was in March. If things continue to improve then I will discuss reducing the drugs I take - but not just yet.

    With the right I support, I really hope that things will improve for you and that you will start to feel better.

  • I've had an ablation but I too believe that my relatively new magnesium supplementation regime has had beneficial effects. Popping a pill during ectopic episodes seems to get rid of them!

  • That's incredibly good if you've been fine since March. Let's hope you've seen the last of it although rare episodes are hardly a big problem. Good health.

  • Go see an EP. If your rhythm isnt controlled by the drug you are taking, its the wrong drug! I believe GP's cannot prescribe rhythm control drugs, thats what mine told me.

  • Try and figure out what would help your mood as building a positive plan is important to counter the understandable helplessness. Everyone's different not just in the medical condition but psychologically as well.

    Personally, I found paying to see a cardiologist early, then an EP, then an Alternative Practitioner (re Magnesium and CoQ10), then a psychologist and this Forum all helped me to feel better. Certainly, discuss alternative drugs as they have a number they can try. Because I had a low pulse already, they put me on just Flecainide and with some tweaking of the dose level it has worked well for 18 months.

  • You say you had a low pulse. When you got the AF episodes, did your pulse get fast?

  • Yes, up from 60 to around 80 with very short blips to 100+. Now on Flecainide stays at 56.

  • I've had PAF for about 4 years now, first two episodes were quite close together, I took myself to A and E (I had no idea what was going on!) I was referred to a cardiologist, not sure if he was an EP but he prescribed flecinide as a pill in the pocket. For the next 3 years I had 2 or 3 episodes a year, the flecinide would sort it in about an hour, then I just took it easy for the rest of the day, but this year I noticed more ectopics/short runs of AF particularly when lying down on my side and was referred to the hospital, I saw a cardiologist who at first I wasn't impressed with, he prescribed 2.5mg bisoprolol Which I expected to have little benefit but credit where it's due my heartbeat has been more settled (or I don't notice any PVs) and the only side effect is tiredness at the end of the day and some muscle aches. The net result and reason for my post is I'm getting on with life! Which in my case includes racing a classic motor cross bike! So I'd suggest seeing an EP and get a better pill in your pocket and more importantly get on with your life! I should add that my AF kept reverting to normal on the way to a doctor or A and E, my mum had an arrythmia and that always reverted as soon as a holter was fitted ....... Law of sod I guess!

  • While this is a disappointment, gemsmum, it was always on the cards. It came, it bothered you, it went away and you'll draw on your experience and know better how to cope another time. Time will come when there won't be tears. Your confidence will be back and AF will merely be an annoyance.

    As you found, a dodgy heartbeat can still keep you ticking over quite well. Remember those who have permanent AF. A&E is the place if you are in pain or worryingly not right, pale and peculiar. It can be handy, though, to get an ECG when you are in AF and be able to see the sort of rhythm you are getting. Always try to get a copy as it can be useful at appointments.

    Little personal handbag size ECG gadgets are available.

    As the others say, it may be time to do something (like seeing an EP although the usual route is to go via a cardiologist first) even if your doctor doesn't think so. A cardiologist will probably suggest a 48 hour or 7 day ECG which will show any little irregularities that you might not notice and will also give an indication of fluctuations in the heart rate. Have you had an echocardiogram which shows the way your heart is working and what state it's in? Us AFers tend to get an enlarged left atrium. These slightly tedious tests (especially if your skin doesn't get on with 7 days of ECG stickers) will further an EP's understanding of your particular brand of AF.

    Remember we've been where you are now and you're not on your own.

  • I disagree about seeing a general cardiologist first. Get your GP to refer you to an EP straight off. As BobD often says the general cardiologist deals with the plumbing of the heart (and body) and an EP deals with the electrics of the heart. You wouldn't get a plumber in first to look at problems with the electrics in your house!!!! The EP specialises in the signals (and it is often rogue ones that cause the AF). The EP can arrange for all of the tests mentioned above (and others) and is also more likely not to miss some peculiarities. If necessary the EP will refer you on to other cardiology specialists. I say this from experience.

    I was very fortunate that my GP was enlightened and she referred me straight to an EP. Apart from being in persistent a number of other abnormalities were found. The EP said most were likely to be as the result of being in persistent AF for some time. One other was moderate to severe leakage in my mitral valve and my EP referred me to a valve specialist in the same hospital which makes it so much easier from a records and consultations process and saves having multiple tests. This is because although it is a national health service all records are kept independently by each trust and two different CCGs (aka trusts) usually cannot see the info from other CCGs. Many hospitals have a general cardiologist but no EPs. Also some CCGs may hold back from cross referring you if they can for a bit because of financial factors.

  • I'm not suggesting it's a good idea to see a cardiologist first!

  • Ok

  • Hi Gemsmum, my experience was similar to yours ie episodes months apart but finely episodes lasting between 2 and 12 days for 21 days out of every 28. Flecainide worked more or less for about a year, but the ablation has given me real hope. Wish I'd done it earlier instead of putting it off for 5 years!

  • Thank you to everyone who has replied and today I do feel better especially having read all your posts. I should have said I paid privately to see an EP in January after I had been diagnosed and I had an echo test which was ok only a small leaking valve showing. The EP recommended I was fitted with a pacemaker, then I could have the medicine to keep my AF in check without making my heartbeat too low. I have usually a pulse of around 48-52 but it got to 180 in hospital in December.

    I told EP I needed time to think about a pacemaker as it seemed after one appointment with him too soon to make my mind up. I was supposed to have another NHS appointment in September to discuss again but haven't had it yet. I still don't know what to do as I cope perfectly ok with a low heartbeat, it is only when I go into AF and need to take the bisoprolol then it takes the pulse and blood pressure down too low. Seems a big thing to have a pacemaker after two episodes of AF. My second grandchild is due in the next two weeks so hope no more AF, thanks again.

  • Chase that appointment

  • Hi gemsmum, yes many of us on here have been down this path at one time or more. with me it's more unfortunately, and a few times I have ended up in A&E. One time having called the paramedic he stayed with me for about an hour, giving me 3 ECG's until he was satisfied my pulse was ok - when he arrived my heart rate was off the Richter scale! He commented on how calm I was regarding the circumstance, I explained - I have now learned to live with it. Let me tell you 2 paramedics have told me, regarding this, when it happens if it is a heavy episode after 10 min's if it persists, always dial 999.

    Like you I am now on Apixaban, and was advised (which I have now done) to carry med details with you, explaining that you are on this drug. There are a couple of good app's that can be put on your mobile. To finish let me add, if and when you do get another episode - big slow deep breaths and most important keep calm inside, you will be fine.

  • My best suggest.....Loose weight ...clean diet ...not smoke....plenty vegetables. ..very few meat....no coffee. ...walk at list 10.000 step a day...no alcohol. ...plenty rest

    I hope it will help to keep you out of AFIB. .....if you'll not follow my parameter I think you'll be looking for trouble.

  • Thanks for your suggestions Maxicono, most of them I follow already. I don't smoke, I weigh 8 stone 12lbs, I don't like coffee, only drink decaf tea and water, walked 3 miles on the Sunday when I had my episode of AF. I have a good diet, the only thing on your list that is probably not good is I have a glass of wine at weekends but didn't have any on Sunday as it was too early, I might have had one at about 9pm if my AF hadn't started. In my case I don't know why it came, the Dr asked me also had I any ideas what brought it on.

  • Did it come on after the walk?

  • No I walked 3 miles around 3pm quite quickly, AF came at 8pm but I did have a few busy days prior to that.

  • It's so upsetting and scary. You feel so alone with the heartbeat doing its thing. I wish we could all reach out a hand and have one of us afibbers hold it while you are in your fear. We all know that fear.......I totally understand.

  • I was told by GP and paramedics and A&E that if low or high bp or high or low HB then best to call 999 as it is usually better to be under observation in A&E so if things change qui kiss you are in the right place. Also very key is that they will do some ECGs (make sure you get a copy for your files) and that may show up transient conditions. This happened in my case when I was not good and the A&E ECG showed ...... branch block which wasn't there when I had an ECG at my heart hospital two weeks earlier. By 8am the next morning it had gone. I keep all my ECGs, blood tests, correspondence, etc in a ring file and I took it with me to A&E in the ambulance. The A&E doctors and consultant read my file because info was on my discharge notes from 10 months previously (I was taken to A&E hospital near me but I am under heart hospital 27 miles away.

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