Patient's Guide to Living with AFib

As an academic and newcomer to AFib I need to know what I'm dealing with and what scientific evidence there exists around causes and triggers. In my quest to understand this all too common condition I came across this: circ.ahajournals.org/conten...

I am sure it will have been posted previously, but think it is really informative to other fellow newbies. Hope this helps to clarify the facts from the anecdotes.

19 Replies

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  • Looks good Marky. You don't say what type of AF you have, but if it's paroxysmal (i.e. occurs from time to time rather than being in AF all the time, in some cases it may be triggered via the vagus nerve. You may want to do some research on the links between AF and the vagus nerve.

    Welcome to the forum!

    Caroline

  • Hi welcome to the forum when I first set out on this rocky road I found the advice helpful some times seeming a little harsh but always well meant and valuable .

    I am not sure the experts always know what they are dealing with - Like Bob's comment about early flyers .

    Good luck with your travels through the world of AF

  • It is indeed a steep learning curve and in the process finding out things about yourself and your lifestyle which also need attention. Sometimes it seems that dealing with the medical problems takes so long it affects everyday life - so anything that will help ease the strain has to be welcome.

  • Hi

    I am new to this site

    Would like to know more about the experts

    Who are they what makes them experts

    Are they medical trained or patient expert

    I would like to know please

    Thank you

  • Great question! I am an qualified, experienced and accredited psychotherapist and work for an NHS IAPT service provider. Therefore my expertise is very much in the psychological area. I am particularly interested and qualified in the impact health disorders have on our mental and emotional wellbeing. I hold a PhD and have published many scientific papers, reviews and blogs on a wide range of topics and therefore am very experienced at critically reading and understanding science. I am however only a novice as an AFib patient!

  • Thank you

  • I have PAF, diagnosed 12/15, 2 episodes of a fib so far but both very symptomatic and scary 10 hours. I am finding the psychological aspect is the most difficult and neither cardiologist orvEP mentioned one word about it. Anxiety was huge, Im getting a grip on it I think. Be nice if psychologists were part of the cardiology team here. Mindful meditation is becoming my new friend.

  • Hi MarkySmith, seems a concise overview.

    Have you checked out the AFA websites? You will find more detail on the downloadable/printable booklets on the publications tab.

    You will find the US version does have slightly different advice on some aspects and obviously services in UK and US are very different.

    Welcome to the group - you will find this is a very well informed and supportive group so if you have any specific questions you will find that someone will have suggestions.

    Best wishes CD.

  • Good read for newly diagnosed

  • The only drawback I can see is that the information contained therin is some 8 years out of date and of course has no mention of NOACs. For more up to date information AF Association website has up to the minute facts and figures. AF treatment is a very new science remember and a lot has happened in the last eight years.

    Bob

  • Thanks Bob. Are you a cardiologist or an ep?

  • No just a long standing survivor. It has been fascinating over the last fifteen or so years to watch and experience how medical science has dealt with AF. From almost complete ignorance amongst general practitioners and an almost dismissive approach by many cardiologists to a much more aware culture of today but there are still too many who are unsympathetic . After a very fast advance in treatment up to say 2008, apart from some new drugs and the NOAC's little much of note has occurred.

    At a talk I gave to conference in 2008 I compared the situation to the early years of aviation and suggested that if the first RF ablation equated to Kittyhawk and the Wright Bros then we were about World War one. We haven't seen Chuck Yaeger yet!

  • In my experience of having AF for over 2 years now, every one of us is different regarding triggers, length of episodes, how we feel during and after an episode.

    My EP told me he didnt think triggers were important unless you are absolutely sure what and what now does it. Life can become quite debilitating when you are thinking what may trigger AF off, he said, if its going to come it will come. Hey ho!!

    Occasionally you think you`ve cracked it but then out of the blue (as mine is) bang it jumps out at you. Enjoy the good times and read what you can but the more you know, brings its own worries. Best wishes...Pat

  • I am also academic (retired). I have found this forum to be useful I that posts are generally data based. I'm new to the AFib world, & admit that I have been somewhat obsessed with reading the associated literature. That's not always a good thing!

  • Welcome. You are not the only one to feel such pressure.

    I felt a huge pressure to get up to speed on the literature when I got Afib. It was as great as the pressure of moving flat, which was probably the stress that triggered it. I had to get up to speed with the medical journals, bearing in mind the pressure to over-medicalise and the strong influence of the drug companies on the so called guidelines. I had to handle all the drug interactions because my doctor told me not to, and I knew he was not checking. When put on Amiodarone I had to handle the INR and dosing management, with information that was vague, I had to insist on lung function tests, + ultrasound of the heart to check there was nothing wrong on that level. After the Cardioversion, I decided when to come off Amiodarone. Fortunately I tested for Thyroid function more often than recommended, and caught it soon enough.

    Then there is the pressure of deciding about the alternative therapies. There are some good ideas, but sorting that out is hard. Then there is the pressure of deciding who to trust. I am only partly medically trained, and am well aware that 'semi-experts' like myself can get it all wrong, hopelessly wrong. But in the end, I have grown in confidence in trusting my own judgement for my own case.

    I documented most of it. I wrote up my own case history. Eventually I arranged a private checkup in Cambridge UK, and sent the file in advance, with, crucially, a list of questions. The consultant confirmed most of my reasoning, then gave specific detailed advice about Pill in the Pocket -- details I had never seen published and were crucial. By all means do your own research, but get your reasoning checked.

  • I too am an academic and a child psychotherapist. This site is so very very helpful and so are Dr Sanjay Guptas videos. AF seems to have as many triggers and treatments as any other illnesses. Good luck

  • Welcome Marky.

    I have done a lot of research and investigative work in my time and I am very analytical and I have used my skills in relation to my AF and other heart issues. This is an objective summary that I hope will be of help.

    The basic content of the article is OKish and valid but some of the information and details are, as others have alluded to, out of date. Unfortunately some of that information is 15 to 20 years old which in AF and arrhythmia terms is very old. You may not be aware that basically the catheter ablation techniques were only really done in 1999 and they and the equipment have come on in leaps and bounds in that time, as has knowledge and understanding. In fact even in the two years since I started my AF journey things and practices have changed. The paper is early 2008 so the information will be 2007 or possibly 2002. It also cites papers that are from early 2000s which means their information is late 90s. Again drawing an aviation parallel that era is like the flying of a tiger moth compared to the first plane with a jet engine!!!

    You will also need to be aware of the fact that many GPs and many non-heart consultants and doctors will know extremely little about AF and arrhythmia and some of what they do know is way out of date and some aspects considered dangerous today. AF and other arrhythmia were recognised when they did their training but very little was known about them. One doctor told me that when he did his training 20 years ago the total content was about an hours worth. EPs (electrophysiologist cardiac consultants) did not exist 20 years ago as a discipline. My own GP quite happily stated to a medical student who was shadowing her that Peter has permanent AF (I corrected to persistent AF) and he knows far more about AF than I do.

    A lot of medicine is an art rather than a science or engineering issues and even today there are very widely differing views on some aspects between leading consultants and researchers. That is typical of a new area, not only medicine. For instance on a very basic level some EPs are still very anti NOACs whereas others will only prescribe NOACs!!! Another example is that 18 months ago when going to have my ablation my EP said that they no longer stopped a patient's warfarin and it had to be taken the night before and the evening after the ablation as normal. However at that time many hospitals / consultants made people stop for 5 days beforehand.

    You will find that there is a wealth of information and experience on this forum, a lot of which is not written down anywhere. When discussing with my EP about some of the things I had found out and learnt he said yes there are but in order to do research someone has to be keen on leading that research, get others involved to support and importantly get some funding. Also if people don't tell their consultant about things that have happened the consultants won't know!!! For instance after ablations it is quite common for patients to get auroras in the eyes afterwards due to piercing of the septum in the heart (and it is quite common). However people on here know about it but there have been a few occasions where patients have told their EP or the cardiac nurses or the general nurses about it and they medics have never heard of this.

    This is much longer than I expected but hope it has helped you and others understand a bit more.

  • Thanks for your reply. In England our GPs, EPs, consultants et al never stop learning and through the CPD (continued professional development) they keep up to date with the science and progress - both clinical and pharmaceutical. They base ALL their diagnoses and treatments on evidenced based practice. These are clearly set out in the so-called NICE guidelines and are regularly updated as new evidence comes to light see nice.org.uk/guidance/cg180?...

    If any forum members don't think that their GP, consultant, EP is using the latest evidenced based best practice, either switch or report them!

  • Hello, Thankyou Thankyou THANKYOU for this link!

    I have only just been diagnosed with AF on an emergency hospital admission, and have been discharged with no guidance whatsoever from doctors re AF so this is gold.

    (I had to laugh though. Avoid salt? I have to take it - for low blood pressure! Which causes massive tachycardia if I don't take countermeasures for low blood pressure. ( Don't panic everyone, am taking salt on medical specialists' advice, it keeps me safe).

    So I am guessing AF is very heterogeneous).

    Article is still immensely useful.

    Did I say Thankyou? THANKYOU!!!

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