On the hamster wheel

In February through May of this year I became very unwell. Nothing in my body was working. I think I had two events, which I put down to having a 'bug', I had arrhythmia anyway, and again, thought it was that. I was also putting on a lot of weight, and the chaos in my chest, well, I just got used to it. I am a male, aged 58, and have never been ill in my life. Diagnosed late May with Persistent AF, with no start date evident, and I got myself a Private Cardiologist. I am currently on 15mg, Bisporolol, yes, 15mg, which is keeping my heart rate at 75, with a consistent, good, BP. I am worried about this level, I also take 2x110mg, dibigotran, per day. They are setting me up for my first CardioV, scheduled late September, giving me 60/40 of success. Needles to say I am not very happy with this approach. Cardiologist talks about 'making me feel better', but I actually want a solution. They are also stating that I am not 'right',for ablation. Do not quite understand this. So, I have accepted that I will keep current dosage, and alter my lifestyle pretty radically, until after the first CV. Then it will be decision time. Any suggestions would be very much welcomed. Obviously the Bisporolol, is giving me the usual lethargy, very tired, fog, and some blackish moments. Will keep the forum posted as to my progress.

18 Replies

  • Is your cardiologist an electrophysiologist? They are the only people who really understand arrhythmias to the full. Did he/she explain why ablation is not right for you.?

    Sorry to say that AF is almost always progressive so a solution may not be that simple. Ablation has the best chance of a drug free outcome but some life style changes have had good results for some patients.

    Go to AF Association website and read all the fact sheets then you can discuss with your doctor form a position of some knowledge.

    Ask any specifics and we will try to answer.

    Dabigartran is an anticoagulant so at least your stroke risk is reduced. I'm sure that they will have told you that AF makes one five times more at risk of a stroke.


  • Thank you Bob, No, my current Cardio is not an electrophysiologist, although I believe my next appointment will be with a suitably qualified person. There was no detail given regarding ablation, other than because I am persistent, current thinking was that Ablation is not the preferred option for this. Apparently, if I get back to Sinus, that may the time for Ablation. Yes, I am actually ready for the CV, given my now eight weeks on the anticoagulant. My main fear was being on long term meds, with no pathway to a resolution. Sometimes the NHS can and do operate to the guidelines, not necessarily in the patients best interest.

  • If DCCV puts you into NSR an ablation is a good option. One needs to fight one's corner in these cash strapped days so knowledge is power.

  • I learned I had to be my own advocate and be very knowledgable so that I could argue my case so good advice from Bob.

    Just read another thread about someone having been offered a double procedure which gives a much higher chance of ablation working with those in persistent AF. don't resign yourself to a life of medications If there maybe other options, research, research, research.

  • Creamer thank you. That was very interesting about the hybrid process. I will investigate, and look into it further. Thanks

  • Max

    You have raised many questions and issues that it would probably take an hour's conversation to clear up!!!! So much information that I could write based on own experience and knowledge but here goes with some key bits and to give encouragement. Some info is paraphrased and not word for word. Look at some of my own posts and responses to other posts as you will gain additional information to your questions. One thing that is very true with AF is that it varies considerably from person to person and for each of us from time to time. It is daunting at first until you get your head round it!!! I am not medically qualified (but a good retainer of information).

    I was first diagnosed with persistent AF a year ago at 60. With the knowledge I have now I had had it for at least a couple of years but gradually deteriorating and explaining various symptoms to other things!!! My EP said no point trying to work out causes and pinpoint times backwards because it can't alter things or provide any use in forward diagnosis / treatment (not true for those in paroxysmal AF).

    One thing is key is that you need to take hold of your situation and be the knowledge expert as to what has happened, medicines, etc as far as you can. You are you 100% of the time but to the consultant you are one of hundreds on his books. The consultant cannot be expected to know everything that has gone on but you can. Keep notes and put in categories. Bullet point style is best. For example one category is medicines; another is medical appointments; etc. That way it is easy to follow. Get copies of all ECGs, blood tests, copies of all the consultant’s letters, etc, etc and set up your own file (get back copies). I put each consultant’s correspondence under a separate divider. With this type of condition it is inevitable that your records and information will be split. Also sometimes it is easier to look at printed copies rather than the GP on the screen (and I m a big fan of computerisation). It may be the National Health Service but records are all localised (and so are policies and practices about many things such as medicines).

    When I was feeling very bad one night I called 999 (turned out that my AF had gone out of control). I gave the Paramedic my file to look at and he said that was fantastic as he could get so much information quickly. Taken to hospital (a different one again as it is the nearest) and again the doctors and consultant commented how brilliant it was to have all the information in one place. The doctor was able to easily compare the ECG that they had just taken with the one that had been done in Barts two weeks before that (and the earlier ones) and see what the “new issues” were.

    When you see an EP they may alter medicines because AF is their speciality. Also remember that different specialists in the same area may very well give different opinions based on each one's experience, knowledge, preferences, etc. However that does not mean that one is wrong. It is not an exact science (unfortunately)!!!

    Did the consultant put you on 15mg per day straight away? I am on 7.5mg per day. Overall I have had three phases of 2.5mg then 5mg and now 7.5mg but each time it was in 1.25mg steps to allow the body to get used to it and to see the effect. One thing that may happen is to reduce the Bisoprolol and then give something else to bring down the HB if necessary.

    As I understand it they will never jump straight to an ablation. The reason for a cardioversion is to see that the heart can go back into normal sinus rhythm (NSR) and also to see if you feel better being in NSR. I had one but went back into persistent AF the next day. However I definitely felt better in that day!!! I was told that there was no chance that I would stay in NSR.

    It may have been that the consultant said that you are not right for an ablation “yet” or meaning yet. DCCV would be first. They may also do other assessments first. When I saw consultant EP after DCCV and going back into AF he said about ablation (but he told me I had to go away and think about it and not make an instant decision – though that was yes anyway). I asked him to be absolutely blunt as to what he thought that my chances of staying NSR were (I knew that you can have multiple ablations). He said 0% first time!!! How long in NSR - he thought POSSIBLY a few weeks. Actually less than 72 hours!!! Waiting for my second ablation.

    Bisoprolol does have side effects but also those same side effects can come from other sources. I was 99.9% convinced it was Bisoprolol but turned out to be a combination of simvastatin and the AF itself. See post response I did in last few days and also earlier responses for more info. Have they put you on a statin?

    If you haven’t already had a full set of blood tests do so as a baseline. Also ask your pharmacist for a medical review appointment (most do this as a free of charge service). My pharmacist (a private chain of about six shops) said with conditions such as this a GP will have limited exposure, the practice overall a bit more exposure but she has people from multiple GP practices. It was thanks to her review and said that I was overdue for blood tests (slipped in the cracks between the GP and the hospitals) that it was picked up that my liver function was quite a bit out because of the simvastatin. That blood test also meant that I was not put on Amiodarone just before my ablation (as was planned) because that would have caused further problems.

    Lifestyle changes are very, very important. Yes things will be different. For instance I used to drink lightly (a couple of bottles of wine a week) and if I went out to the pub once or twice a month a couple of pints. Whilst I miss that (less so now) it is a minor inconvenience rather than an essential. Same goes for processed foods.

    Hope that this helps.


  • I forgot to include:

    If you haven’t done so (and can afford it) I suggest getting an AliveCor (or equivalent) and a blood pressure cuff monitor (last year there was only one that is suitable / approved by NICE for those actually in AF).

  • Peter, you wrote something that should be a widespread practice no matter who you are or what kind(s) of condition(s) you may have:

    "you need to take hold of your situation and be the knowledge expert as to what has happened, medicines, etc as far as you can."

    Western medicine is a collection of miracles housed in separate silos, all wrapped up in narrow-mindedness. My cardiologist doesn't talk to my regular doc - not that they don't like each other, but they don't have time. If you can't tell them what's happening they wander around in a dark labyrinth.

    You must be your own advocate. That includes learning about non-Western medicine and the many things it offers.

  • If I could have highlighted that sentence in bold text I would have!!!

    Also the GP can not be expected to everything that is happening to an individual or the timescales because they don't have the time or the mental capacity to do that for everyone. I am currently under 6 consultants at four different hospitals!!

    One good thing that happens (around here at any rate) is that the consultant sends the GP a letter after each visit with a copy to me. That is brilliant because twice in the last six months a letter has been sent out and I have received my copy but the GP hasn't (one of those times both copies were sent to me in separate envelopes). Neither was the two heart consultants I am under.

  • Peter, thank you. That has given me a fairly deep coverage of the journey. The file is a great idea. I also take two BP a day, with pulse rate. I can quickly get that up and running. No, I started on 2.5 a day. After a few days, I was being monitored on a tele medicine home hub, heart rate was still north of 140, dropping to 45 randomly. I then went to 7.5, then to 10mg, then to 15mg. That is over eight weeks. The NHS cardio, whilst concerned at the dosage, is happy about what effect it is having in stabilising the heart. Leave it be was her advice until the Cardioversion. So, I am in controlled rhythm, with a fairly low Blood pressure. I am not on a statin. All bloods are perfectly normal, including thyroid. I have been off alcohol since 10th July, when I first saw my cardio. I have sourced and researched the EP, their are four of them. Hopefully I will get my referral letter shortly. Interestingly, had an appointment with my GP today, to get more medication. He was not interested in any real discussion about AF, way out of his knowledge zone was his response. At least he was honest.....

  • YES! That's a perfect example of what I just wrote in response to Peter's excellent posting.

  • Hi there

    I am on biso at 5mg a day, was also taking ramipril as well. I am in persistant AF and in May this year had to be addmitted because of fluid retention bp and heart rate all over the place. The consultant wanted to up my biso to 7.5 but I have tried this before for a short time and I just cannot function on this dose. Wanted me also to go back on digoxin,had stopped this 9 months ago (was causing problems another story). Under protest they did give me a dose of 7.5 in hospital on second day and I was away with the faires and as the staff nurse said the next morning - it did not help with your bp and hr in fact it went higher. Junior Doc came to see me again and said I either had to take 7.5 of biso or 5 biso and digoxin, those are the medications the we prescribe for

    af in this hospital. I refused and said there other alternatives please look into this. Her answer was but that means I have to find a consultant to find out.

    Later that day a doctor I had never seen came to speak 'to me and suggested Diltiazem, didn't seem too enthusiastic about it but i greed to try. So am now pm 5 biso and 180 diltiazem. I feel much better on this combi, less tired and less breathless. I think my body can tolerate upto 5 of biso and I am not too bad on that but no more. I am still on ramipril and an aticoag. Your dose of 15 biso does seem very high .

    regards Cassie

  • Thank you Cassie. Firstly sorry to hear about your trials, certainly sympathise, and glad that you stood your ground on the dosage of Biso. How is your HR and BP, on this combo and doseage? I am a bit between a rock and a hard place at moment, in that I would decrease my doseage, and possibly alter the anti coagulant, but the consultant said, which I can agree with, that pre CV, do not alter the anti coagulant. I feel my next big moment will be seeing the EP. Armed with all the good info I am getting here, I can go to this with a good understanding of where I need to be. Do you have a route map? CV, discussion about Ablation?

  • Unfortunately there is no route map (that I know of) particularly as each of our journey's with "AF" is so varied as it is a mongrel situation. Also the interactions and knock-on affects are so varied. Also, to me, it is apparent that the actual symptoms, affects, medicines, etc, vary considerably not only from person to person but also from time to time (ie day to day)

  • Hi Maxred1

    My heart rate and bp have been a lot better on the new combination, I am less breathless and my chest used to feel a little tight at times but this seems to have eased that as well and I feel far more withit. My normal blood pressure readings were always a little above normal but with the new combi it is a lot lower - in fact I had some readings I was getting worried about they were down to 112/75, really low for me but was told it was fine. I did ask if I could cut down a bit on the biso at my last meeting with the heart failure nurse but was told no. I think that they were reluctant giving diltiazem because one of the side effects is fluid retention - which I do suffer from but only when my heart

    is misbehaving. It has not caused me any fluid retention problems yet touch wood.

    hope all is sorted soon. Cassie

  • So, 10 days have passed and no letter from the first meeting with NHS Cardio. I call to query where it is. Cardio calls me. You are on the waiting list for CV, you will get a call. I ask where is the referral to the EP. You will not get a referral, I am your Cardio. It then gets a bit aggressive, I know best states she. Sorry, I respond, you are following the guidelines. She states I am being controlled on the medication, rate control, so everything's fine? I remind her of the dosage, and that everything's not fine. I then get the speech stating that it is really difficult condition to treat, they know best etc., etc. She finally relented a bit, stating that she would e mail the EP, but, they would, in all probability, NOT see me until after CV. I respond, I would like to see them pre CV.........she kicks back that I am free to go privately, but that would then stall the NHS process. I remind her, ever so slightly sardonically, I am the patient. I really do not want to fight......Oh, I have put this in the event folder I am now keeping!!!

  • I get the impression from a number of situations and sources that some cardiologists do not like EPs.

  • Interesting comment Peter. From the tone in her voice, and the fact that I quoted two names of EP's at another hospital unit, seemed to rile her. A giveaway that perhaps she views them as somehow, not REAL cardiologists. It is a pretty strange profession, the medical profession. Calling my GP in morning, get him to refer me to the EP. That should go down well.....

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