Seems to have got far worse really fast

Hi all, I've gone from first symptoms, through diagnosis and medication in 3 months and am now having several episodes per day (to be honest some days it''s more or less constant). I wake with a fib and fall asleep with it. Then might have a day with virtually nothing like a lovely oasis 😊.

Question is, is this a normal sounding progression? Seems to be leaping ahead. Or can it go thru phases of more or less episodes for no apparent reason?

I am on 120mg daily verapramil and anticoagulant. I'm 49 no other health issues.

Thank you

28 Replies

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  • Sorry to hear you are having a tough time. I can only share my experience and I have bad to horrendous times then periods of stability and few symptoms.

    It's a rogue mongrel of a condition that we all seem to experience in different ways. Your medics will sort out a treatment plan and get you back on an even keel I am sure of it.

  • AF is almost always progressive and to be honest you are still very much at the start of your AF journey. An EP should be able to put in place a proper treatment plan which may help to control symptoms or if that fails go for ablation . At your age a life time of drugs is not to be recommended.

    If you are not already under the care of an EP then ask to be.

    Bob

  • From what I have learnt and read AF has a mind of its own and yes, certainly for me (and I am in persistent AF) it can vary quite considerably from day to day. I have learnt over time how to predict what is happening, often in advance, and then adjusting my plans, etc to accommodate as far as practicable.

  • Can I ask - are there reasons why I shouldn't be on meds till I'm old? Say 20-30 years (I jolly well hope 😊)?

    Say if an ablation is just not for me or fails then surely it's lifetime meds no alternative? I had understood that they do not build up toxins?

    Also when you talk about progression does it mean that you will have it more often but that drugs could still control it?

    I'm not really asking that clearly can't think of the correct wording. Sorry.

    I was feeling great on the verapramil until recently so maybe it's just a blip! Thank you

  • Scottish Muppet, I assume you live in Scotland, as I do. The Scottish NHS guidelines are currently rate control, as preferred treatment. I am with an EP based at Glasgow Royal. So, I am permanent/persistent. I am being rate controlled with Digoxin, and Bisoprolol. I have been told I will not be ablated. I have periods of being relatively well, then periods of what I call attacks. Very breathless, eyes glazed and red, cold like symptoms, lethargic, and very tired. My EP, states this must be due to something else, although all on here will recognise that these symptoms are real, and come and go. So, yesterday, all,symptoms arrived, BP dropped, HR went up to 90, and yet I changed nothing. Meds stable. The conundrum is, why these attacks? Logic states the meds should be controlling me, and for the best part they do, until they don't. My pattern seems to be three weeks well, one week unwell. I certainly hope it does not get progressive, because I really cannot increase my meds. In answer to your point, long term meds can bring other health issues, and over time, they lose efficacy, hence, AF getting progressive. I am not a medic though. Seek advice, preferably from a respected EP.

  • Hi Scottishmuppet,

    I've been on medication since I was first diagnosed in my early twenties 30 years ago and have suffered no long term problems. I don't understand why some people insist on scaring people about long term medication for afib as there is absolutely no reason why you should not have it kept controlled for the rest of your life if necessary! It may not be the first choice of some and that's fine but there are those of us who don't see ablation as the be all and end all either. I'm living proof that long term medication will do you no harm but of course there will always be people who react badly to any drug and it will obviously impact on you if that's the case but in general if you find a suitable drugs regimen , and that's the hard bit, I've had to "tweek" mine a few times over the years, then there is no reason you can't live a good life on beta blockers and / or anti arythmics. I'm in the west of Scotland and have a superb cardiologist at Crosshouse.

    /

  • I know how you feel. I'm currently in persistent AF, have recently started Bisoprolol and Apixaban and feel tired and alone. Though this forum is really great.

    I'm 47 and worry about the future. I've read as much as I can in a short space of time and outcomes do vary from person to person. I have times when I can feel fine and upbeat and others when I feel rubbish. I'm having an echocardiogram tomorrow and am hoping that is OK.

    Stuart

  • Hi Stuart I'm so sorry you are feeling rubbish. I think being in your 40s it is very hard to take....I keep.hearing well meaning pals saying "oh yes my granny has that" and I think "well thanks but I'm a mum to 7 year old twins not their granny!".

    Anyway it is definitely good to talk and I have seen so many people on here and elsewhere so clearly still enjoying life and just toddling along that it does give me heart 😆.

    I hope all goes well for you from here.

  • I think we have all had similar experiences. At the peak I was having several episodes per week. I was prescribed flecanide which initially had no affect. The dose was then doubled and my AF got worse. Bisoprolol was then added and I started taking a magnesium supplement. Things then started to improve.

    I tried to maintain a positive outlook and also tried very hard not to allow things to stress me (stress was a key trigger for me). I changed my diet, gave up alcohol and lost nearly 3 stones in weight.

    I have not had an episode for over a year but I have been told I will be on medication for life. I have other ideas about that and plan to slowly reduce my intake from the autumn.

    Things may look bad for you at the moment but my advice is to take control of the things you can influence and start to make some progress.

  • Hi Scotty. Unfortunately AF is rarely anything but progressive but the rate of progression is on a spectrum. You happen to be moving more rapidly towards persistent or permanent AF. Drugs don't control AF. They may control the symptoms to a lesser or greater extent - but the only cure on the table now and in the foreseeable future is ablation therapy. An ablation is more likely to be successful the sooner you have one and, as you are in the 'fast lane' so to speak, a decision to take that option is probably more pressing for you than for some others. You don't want to be on a cocktail of drugs which become less effective as time goes on for the rest of your long life. You have already come to appreciate your visits to the 'lovely oasis'. Move there permanently!

  • Just to flesh that out a bit. there is an old saying. AF begets AF. When the atrium fibrlliates the rogue pathways become established and thus the more you have it the more you will get it. Rate control drugs do not stop AF. merely control the heart rate during events and of course the anticoagulation is for stroke control as AF makes us five time more at risk of stroke.

    The general treatment pathway is rate control and if that fails then rhythm control may be tried and if THAT fails then ablation may be offered. There are many EPs who feel that early intervention by ablation stands the best chance of successful outcome.

    At the end of the day you pays your money and you makes your choice but if you have already worked on life style, diet and stress reducing aspects then your choices do become fewer.

    In my own case, when I was diagnosed in 2004 (after ten years of a useless GP who couldn't recognise it to save his own life) I was offered an ablation but like you feared the implied risks. As my condition deteriorated (as my consultant forecast, ) that changed and a year later I had my first ablation which sadly did not help. A second a year after that improved my QOL for,about 9 months before break through events started up again and I went for my third and final ablation. That was in 2008 sine when I have been AF free. Sure I still get some arrhythmias. mainly clusters of ectopics and short runs of tachycardia but that dreadful draining and life ruining AF not at all. If I ever needed a fourth and my EP was prepared to do it I would go again in a shot.

    Life is too short not to embrace ever chance and with my other health issues ( recovered cancer patient) I already take quite enough drugs. In fact I also believe that had I not had my ablation they most likely would not have been able to do the nearly five hour operation which saved my life.

    We never know what is round the corner so grasp every opportunity.

    Bob

  • Couldn't agree more.....

  • Yes, do keep going to docs, be persistent, about the way things are going and how your life is being affected. Ask for a referral to an EP and dont give up. Its a frustrating journey, you think youve found something that will help, but get so disappointed when it doesn`t. When you have a good week, you think well its not too bad really but, bang, down you go when its back. We are with you and give you our love and support. Pat

  • This inconsistency is what I don't understand. You are 49 with no other health issues and yet you are still on an anti-coag. Because I have a CHAD score of 0, which you presumably have, my GP does not advise anti-coags at the moment and so why are you on them? Does this decision vary from surgery to surgery? Can I say to my GP I want to be on them despite what he is saying?

  • Hi I got mine by simply asking for them. I explained to my GP that I was terrified of stroke risk and he agreed.

  • Alan. Scottishmuppet is right to ask for an anticoagulant if she is scared of having a stroke, and personally I would. I cannot remember whether or not she is on an NOAC but they have a lower bleed risk than warfarin (which is low anyway). Some GPs [in my view very good] will always start a patient on anticoagulation straight away even if they have an initial CHADSVAC score of 0 because there are some aspects that are not easily identifiable from initial consultation. I was 60 at the point of diagnosis and had initial CHADSVAC score of 0, but as it turned out that was false following further tests and investigations. Also as my GP said initially you will need a cardioversion at some point and an ablation is a possibility so might as well get anticoagulated sooner rather than later.

    As has been pointed out to me and also on here CHADSVAC is a rough and ready tool but it is the best that is around at the moment. EPs and other consultants are very split on anticoagulation short term and long term. However AF does increase the risks of a stroke. The shame is that the UK is one of the worst in Europe for stroke prevention by use of anticoagulation and therefore have a much higher incidence of strokes that could be prevented and also the severity.

    The variance amongst GPs is, I suspect, even more variable because of the lack of knowledge and training. Many GPs will have had little or no training on AF because most of the knowledge has been gained in the last 10 years or so. There are loads of GPs out there who have not had one of their patients have an ablation.

  • Thank you Peter. Yes I am on an NOAC which I received without having to beg 😆. Riveroxiban was awful as I had an allergic reaction but apixiban seems just fine.

  • Okay Peter, thanks for that. My GP has quite a few AF patients and has had ablation patients as well as he told me when I expressed concern about the risks of ablation that the worst he'd experienced with his patients was that it simply didn't work.

  • Let's be clear - it is 99% probably that it is only going to get worse on drugs and will ruin the rest of your life.

    Pay to see an EP privately now as it's the quickest way to get on the waiting list for an ablation if you are suitable, which most people though not all are. Your GP has to refer you if you ask so don't accept him/her saying they don't recommend you go this route.

  • Hi there I'm not sure it's going to ruin the rest of my life!

    I am fortunate in that I have private medical cover through work.

    All the best

  • If you leave it not properly treated AF always gets worse. Since you have private cover most definitely go and see and EP next week. I'm sure someone on here can say who the best one in Scotland is.

  • I would go and be referred to Professor Andrew Rankin, Glasgow Royal Infirmary. Obviously if you live in the Royals catchment area.

  • Hi no I'm in Aberdeen but the EP here performs around 1 ablation per week so quite experienced.

    I am very new to AF but I really want to try meds first before I have the procedure. I have a young family and I cannot take any risks at this time. I'm delighted it works for so many but I also think.some of us could toddle along on medicine, once the dose cocktail is right, for quite some time.

  • There are several treatment options and medicines are generally the first choice but verapamil would certainly not be my choice as it only slows you heart rate – it does NOT do anything (apart from lowering your blood pressure) to prevent AF. If your heart is OK otherwise the drug of choice would be flecainide, which may be effective for a while or even lon-term. Although, as others have said, AF tends to progress this is not always so: it may be a temporary problem for a year or two related to hormone changes; if you have hypertension it could settle when this is under good control; If you drink more than a "wee dram" it could get better when you stop; etc.

    So if flecainide (or propafenone or dronedarone) tides you over you may not ever have to progress to ablation. But as BobD says, you don't want to just let it carry on getting worse without doing something positive about it – and soon.

  • Like all treatment modalities for AF - it depends. I'm also recently diagnosed. I had one hour run in January, then an 18 hour run in March. No arrhythmia since. My EP prescribed Pradaxa, a continuation of the Verapimil I was already taking for migraine prevention & part of a blood pressure cocktail. He gave me a prescription of Flecainide, but said no need to take it unless (until?) my arrhythmia gets more frequent.

  • hi excuse me butting in, but ive been on drugs for 3 years to no avail, my paf is worse , they are looking at ablation next but go with your gut feelng

  • Thank you Jonathan your post does highlight something I've wondering about myself...I am menopausal and have been on HRT for a little over a year. That never did seem like coincidence to me although to be fair to my cardiologist intends giving me flecainide next he just wanted to introduce things gradually.

    Thank you

  • Afib is a nasty beast at best and each of us has a different story. I have afib for almost 10 years with 4 episdoes each under an hour and converting on my own. I'm on 120 mg of Cardizem and low dose aspirin. My doctor does not want me on a blood thinner unless I absolutely need it. Not everyone, and this was told to me by my cardio doctor and EP, becomes worse. I'm keeping my fingers crossed. Just had a nuclear stress test, got to 160 with no problems, everything normal, same with echocardiogram. Best of luck to you..I'm a firm believer that stress is the biggest factor. When I'm stressed I get lots of PAC's so I know to calm down and relax!

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