Advice please

Hi. I am new to this. 6 weeks ago I was sent by the GP to A and E where I had PAF diagnosed, I was give Bisoprolol 1.25 mgs daily, warfarin, referred to have a 7 day ECG and Ecogram, all now completed and am waiting to see a cardiologist. Since the diagnosis I have had 5 further episodes of AF, lasting between 4-11 hours, always in the middle of the night or just prior to sleep, been to A and E again, where I was almost overdosed on beta blockers ( prior to this diagnosis my resting pulse rate was 60 and is now 50).

At 2am this morning awoke in AF and it is still going strong at 7pm. HR about 120 I am lost and just do not know what to do, all the other times it has sorted itself out within 12 hours, I just want to cry. Should I go to A and E?

Any suggestion welcomed.

23 Replies

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  • Yes definitely but suggest you call 999 if that is the way you went in before. Good luck.

  • Thanks Peter.

  • The general rule is that if you have any chest pain or feel faint or dizzy then go. To be honest a HR of 120 is not that high for AF so you may not get much sympathy at A and E which is sometimes rather deflating to say the least,

    You are very early in your AF journey so I suggest that you read as much as you can form the fact sheets on AF Association main website as knowledge is power and will help you to cope.

    Bob

  • Thanks Bob, just what I needed to hear. This isn't a journey I would have chosen, agree information does empower, but doesn't stop the one being frightened.

  • Hi. Others have given great advice so I am here to empathise as I too am in the middle of an A.F. episode. I am an old hand at this now but still feel worried and quite emotional whenever it happens. My heart rate is also around 120/130. However, I have learned how best to deal with it for me. I usually carry on with whatever I was doing as long as it is not too energetic. For example, tonight I have been to choir practice. I didn't sing very well as I couldn't breathe properly and I did feel a bit dizzy but I was doing something normal and pretending to be o.k. actually does make me feel better. This is just my way and eventually you will find a way of getting through it all. When you see an E.P. I expect he will give you some clear options and then you will start to feel more in control. In the meantime I'm sending you a hug. X

  • You have come to the right place for advice - amazing forum. PAF is extremely a worrying condition but rest assured, it is not life threatening. There are so many of us, me included, who live with this, some have more episodes than others, and there are also different types of AF. I also find that when resting, an episode of PAF raises its head. It is up to you whether you go to A&E, but be prepared for a long wait there. Try contacting the cardiologist' s Secretary in the morning and see if you can get an earlier appt to see him. Try to keep as calm as you can, not easy, but anxiety just adds fuel to the fire. I do feel for you and hope very soon you will revert to normal sinus rhythm. You are not alone, there are many others who will be able to give you more appropriate advice as I too am fairly new to the forum, but have been suffering from PAF for many years. I do hope you feel better soon.

    With best wishes

    Carol

  • Thank you X

  • Hi - I go months with the heart rate that you mention and years later I'm still here to tell the tale, so please stop worrying. I wouldn't normally go to A+E unless my heart rate was over 140 and had been that for a few hours, would certainly go there if I felt ill with it. I too was overdosed on beta blockers in hospital, made me collapse when I got out of bed in the ward one morning.

    You know you could always dial 111 and ask for some advice, that would put your mind at rest. Hope you soon feel better.

    Jean x

  • It gets to the point Mo,where it becomes mind over matter after a while,it ain't much fun i know,especially when it occurs during the early hours,( which in my case it normally does)..hopefully you will find your level medication wise,to help regulate it..butfunnily enough you will get used to it,I just read a book,or like now it's 5am,I scroll thru' my iPad...listening merrily to my disco heartbeat,which must be at least 100 bpm until it decides to take a rest...it's a waiting game...this condition just does its own thing...we ain't got much choice in the matter...Good Luck..Terry

  • I would advise you to make sure you are going to see ep and not just a cardiologist and if you could afford to pay for nitial consultation I would it would probably be about £150 to £250 but money well spent as you woul beagle to be seen within a week you maybe need to be on a decoagulation drug as you run a risk with af as I am sure you have researched. I went private initially but did not get my appointment for cardiologist nhs 4 month later and he was not an ep which I really would have insisted for knowing what I have learnt from this site . Good luck and if you feel you need a and e I would go

  • Like you I went to A&E when having an episode - just so they could capture it on an ECG. I too was sent home on 1.25mg of Bisoprolol and Warfarin. My episodes come on in the evenings, so I just try to relax and go with the flow. By the morning I am back to being ok. I was not happy with the treatment I was getting from the cardiologist so asked my GP to refer me to an EP. So glad that I did. Went to see Dr Todd at Liverpool 2 weeks ago and am booked in for an ablation on 3rd December.

    I suggest that you read up on the subject (this forum is a great way to get information) and take charge. You are not alone, there are very knowledgeable people on here who have been through it.

    Good luck.

  • Hi Mo-Ararat,

    Sorry to hear about your current situation. You have already had some quality information from forum members already. The only thing I would add which may be of use, is to examine your diet, and to see if you can make any improvements to your health in general terms. The latest information coming out in the AF world is

    that this is the way forward.

    Best Wishes

    Barry

  • HI Mo & welcome.

    It is a very scary place where you are now, but it can only get better. Agree with all of above, especially see an EP Electrohysiologist, if you can - they are the electricians of the heart. You may have to wait, unless you go privately, but well worth the efforts. There is a list of EPs on the AFA website, link from this site, and you can ask your GP to be referred directly. I wasted 7 years seeing cardiologists getting no where before I went to an AFA patients' day and found this forum. I have been treated and now have no more episodes.

    AF is a learning curve, learn as much as you can as fast as you can. Before you see the cardiologist/EP know about all of the drugs used, know about treatments such as ablations and what they mean, read all of the posts here where you will learn SO much - then put all of your concerns on a piece of paper and from your list prioritise them - then draw up a list of questions to ask 1st your GP, then your specialist.

    If you have ANY questions then ask, no matter how silly you think they might be or if you feel down or just want to rant - nearly always someone around to listen.

    If your AF is mainly at night - I found the best way to get some sleep is propped up on as many pillows as I could gather and to put my earphones in and listen to the MOST boring audio book I could find read by the most monotonous voice reading it - worked every time and I would more often than not awake in the morning refreshed and AF gone. The worst thing you can do is be on your side listening to that awful, out of rythm thump, thump. Some people find one side is worse than another.

    One of the questions you might ask your GP if you have a long wait is about anti-coagulation and whether or not you should be considered, GPs can prescribe anticoagulants.

    A lot to take in but take your time and watch the anxiety as this will accelerate the effect of AF and only make it worse so find coping strategies.

    Very best wishes CD.

  • Only those of us who have AF know how rotten it makes you feel! I could cheerfully clout anyone who writes it off as "palpitations."

    My AF also often starts during the night. I now take my bisoprolol just before bedtime and have found this to be helpful.

    The advice to see an EP is excellent.

  • Hello Mo-ararat

    AF can be scary, especially soon after diagnosis before we have learned how our hearts react and how to cope with episodes. Like other posters, I waited my episodes out quietly resting and trying to think of something else. It has to be your choice to go to A & E or not - for me the journey to the hospital was probably more stressful than the episodes - I couldn't imagine travelling 45 minutes with a heart rate of 90/200.

    The advice to ring your cardiologist's secretary is good and I would also try to get to see an EP - privately if you can and need to.

    I hope you are feeling a bit better this morning.

  • No don't do that, call 111, you only have to mention 'heart trouble' and they send an ambulance, or that's my experience here on the Isle of Wight.

    I believe that you need to see an EP as soon as possible and get the correct medication. And a good cry won't hurt you. This is really the worst time as you think you are never going to feel better, but with the correct meds and good support you should.

    Is there someone with you or are you alone? Horrid if alone as everything feel so much worse at night.

    The tiredness is normal as your heart is going so much faster than normal, someone said to me when mine had been 180 for hours, no wonder you feel awful you have done the equivalent of a marathon.

    There is light at the end of this particular tunnel, good luck.

  • was in the same position before I got Flecanaide ( rhythm control) + bisoporol you may not be able to have that but , I was having daily attacks but since going on Flec 2X50mg 5 years ago I have about 3 a year and nothing like as bad. Good luck

  • Hi! Mo-ararat

    Lots of good advice here. I would skip the Cardiologist and head straight to the EP (Electrophysiologist). Ask for the referral either from your doctor or when you get into A and E or when you see your first Cardiologist.

    If you feel bad get to A and E. either by ambulance or with a driving friend. Better that than hanging about wondering and feeling frightened. Did I see a lady in Liverpool on this blog who on arrival at A and E got an immediate referral to an EP and was Ablated within the week. It is such a relief when the heart gets back to normal. Don't hold back Mo. Go for it and get well, Dave.

  • Thank you all so much for taking the time to reply to my request. I awoke this morning with a normal regular pulse, and to add to my feeling of relief were all the encouraging messages from you.

    I have searched the cardiologist that I have been referred to and found that he is also an EP, but not on the AF Associations list, found out that the date of my NHS appointment is not until just before Christmas, so have phoned the consultants secretary and will see him privately. The suggestion to take the Bisoprolol at night will be tried. I continue with investigation of possible triggers and daily yoga.

    Thank you, I felt humbled and cared for.

    Mo

  • Check that he actually does ablations (I am not saying he doesn't!!!) and how many per year. If he doesn't do them himself or only does a small number per year then I personally would be looking for someone who not only does ablations but a decent number per year. Note that the number won't be in the high hundreds since some procedures take a long time (mine took 6.5 hours). When I had my ablation my EP only did 2 that day. Started around 08:00 with first patient in about 08:30 and then me in at 11:00 and then tidying up and closing down the lab.

    Some cardiologists "experience / profile / CVs" say they deal with arrhythmias and electrophysiology but delving further they don't do ablations or do very few!!!!

  • Hi. Glad you are in normal rythum again. I am currently awaiting ablation and already on flecanide and rivaroxiban anticoagulant, but should take bisoprolol too but can't tolerate it as I drop my blood pressure to 80/50.

    However, when having an episode a few weeks ago I contacted my consultant and asked what I should do as it had been present a good few hours and not settling with an extra flecanide. He said try a bisoprolol instead and rest up ( due to the blood pressure side effect issue) and if not settling overnight then go to A&E.

    Hope that helps

    X

  • Really good suggestion Peter. His name is Dr Nunn, I believe that he set up the EP department in Maidstone hospital.

  • When my first episode came I went to A & E and was prescribed a beta blocker. Over the following 5 weeks I was in and out of AF and in and out of A & E as the beta blocker did very little for my AF. Over the 5 weeks I had all the tests that you mentioned and a tread mill test.

    The findings were that my heart was structurally sound and I was switched to a rhythm control drug fleccainide. Within 2 hours of taking it I was back in sinus.

    I didn't die in the first 5 weeks but felt as though I was about to and my distress reflected in my repeated visits to A & E.

    I'm still here after 16 years.

    The results of your tests will indicate the general condition of your heart. Ask your cardiologist about your suitability for rhythm control drugs. Bisoprolol is beta blocker, a rate control drug, and has little effect on rhythm.

    Its the start of a long journey that feels very lonely at times but persevere, use the forum, increase your knowledge. An informed questioning of your cardiologist or possibly an electro-physiologist, will ensure you have your preferred/correct treatment.

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