The Trouble with AFib

i am from the states and enjoy these post very much. The method of treatment in a lot of cases is different in this country than in the UK or Australia I have had AFib for over 5 years. Started horribly with a rate of over 268, put in ICU (contrary to popular belief AFib can kill you) drugs stopped my heart had to have a pacemaker to keep me alive and it took 4 mos to get it under control. I take Sotalol and warfarin. Was good for 3 years and boom it comes back with a vengeance only to find out later that it was caused by my Dr incorrectly setting my pacemaker so I ended up with cyroablation. I still take Sotalol as my heart goes up to 150bpm without it. These drugs are dangerous. It was Flecenade that stopped my heart. Here they are called black label drugs which at first have to be administered in the hospital the first 72 hours. If they are changed or doses changed it must be done in the hospital and one of the big reasons is the QT intervals of your heart. I notice that a lot of people on this site exercise a lot when that is a known trigger for those of us with AFib.

Last week I had an appt with my cardiologist and here is part of our conversation. He is a great Dr and surgeon with the Cleveland Clinic. He said everyone's AF is different, however it is dangerous as I was telling him it was not. He explained that the majority of people who drop dead do so from Venticullar tachycardia which can be an off shoot from AF because of QT intervals which and I quote is not consistent with life. Therefore I was living under a false sense of security. The drugs we take to keep the rhythm at bay aRe very hard on our bodies. So here is what I think the trouble with AFib is....learning to live with it while it lives in the back of your mind. We who have it fear it. The trouble is living with fear. I have been in the hospital 20 times always afraid this would be the last time. It's now over a year thank God but have stayed away from exercise and the triggers that are known and if my heart rate goes up to high 90's and 100's to drink ice water and put ice under the arms as it stops it. I wish everyone good luck with this wretched disease.

15 Replies

  • Yes AF is a very unpleasant CONDITION for sure and everybody has different problems/ symptoms, severity etc which makes it difficult to generalise. I also agree that drugs like flecainide should be administered in a controlled environment due to possible affect on other heart rhythms. In UK it should not be prescribed by primary care physicians (GPs) but only by consultant level but there always seem to be those who do otherwise.

    As proof that we are all different. your ice water idea would be bad news for many people who would be seriously affected by it. Cold is bad news where circulation problems exist and can exacerbate angina for those at risk.

    Again exercise IN MODERATION can be beneficial for many but I do stress moderation. There are too many adrenaline junkies out there who have brought AF onto themselves by their determination to over-stress their bodies. As my old Granny used to say, "There's none so queer as folk."

  • You are so right - we are all different and react differently to this condition and to the therapies which help to control it. It sounds as if you have had a rough time and have come through so well.

    Many of us - myself included - use Flecainide very successfully to control symptoms and have some quality of life. It is not used for those patients who have heart abnormalities as the risks of dangerous prolonged QT are too great in these patients but for those with no other heart issues, it can be a real friend, causing no problems or worries.

    Living with AF is a challenge - anxiety is an enemy, I agree and it does creep in - usually at 4am!! Your ice treatment is interesting - under the arms sounds very brave.

    Best wishes.

  • Hi Harboreyes,

    I just going to address one point if that is OK which is just how dangerous is AF and will it cause a heart attack, or eventually heart failure.

    Because despite what you appear to have been told at the Cleveland, the prevailing medical opinion, and this is backed by some long term studies is NO.

    No that needs some provisos, and most particularly that uncontrolled heart rates with AF over a longer period can lead to heart failure, but note here it's not the atrial heart rate being measured but the ventricular. So yes having a heart rate of 268 uncontrolled can certainly lead to heart failure, and yes the drugs used to control heart rate are not without their side effects and long term challenges.

    But living in fear of it? I choose not to, perhaps you might say foolishly, but I prefer the majority opinion that AF itself will not kill me. However of course uncontrolled high heart rate might, as might the much more serious risk of stroke. I will continue to take my anti coagulants probably unbtil the day I die.

    Be well, live well


  • Life is a risky business. AF can be scary and reading the data sheets with one's meds even scarier. For many years I have worked on the principle that others tread this path and survive for many years.

    Less well informed folk accept their doctors' decisions and think medical stuff is the docs responsibility. In many ways it might be easier for us if we were in this bracket.

    Then there are us folk who want to know the far end of everything. For us knowledge is power ,( and a modicum of anxiety because we have chosen to take responsibility for our own health)

    As we have chosen to be well informed, another responsibility is to look after our psychological well-being. This may include relaxation, meditation, mindfulness, therapy or just " getting on with it.. "Meeting" people on this forum balances my outlook on AF as we all have individual approaches underpinned by knowledge. Thank you for your support. Wendy B

  • Hi and welcome to the forum. You do seem to have been through it and yes AF is a scary condition and therefor living with the fear is, in my opinion, THE most important issue to address. And there are many ways of addressing it which is why you will see so many posts about living and thriving rather than just surviving. We are what we think so positive mindset is essential as we start dying the moment we stop truly living so my message would always be to focus on the good in your life, be grateful for what you have and do things you enjoy.

    - last Thursday I played hooky from a course I was attending on Managing Chronic Conditions because that day I felt really well, the sun was shining (well it was then!) and my husband who is 82 said lets go sailing....... So we did! I got cold and wet, too windy for us to manage once we got out there and we retreated to a floating restaurant In the middle of the river and had a fabulous lunch and laughed and I had the most fun for ages, despite being soaking wet and rather cold! Far, far more beneficial than sitting in a stuffy training room! Never waste an opportunity to play hooky and have fun, nobody on their deathbed wishes they had worked more or harder!

    Interesting that you have been prescribed Sotolol as it is not recommended for use with lone AF by UK NICE guidelines precisely because it can affect the ventricles but you seem to tolerate it but not Flecainide which sort of indicates just how different we all are and there is no one solution.

    I think the attitude of the medics in the US and Uk also varies, UK doesn't go in for expensive tests and great detail. You are correct in that AF CAN kill, but I know of only one person - a very fit ex-marine who was an exercise junky and wouldn't heed the warnings of fast, irregular heart beat as he was trained to push through the pain, unfortunately he died of heart failure so certainly there are risks of very fast AF.

    I think for most people with AF their heart rate rarely exceeds 200, mine would go to 180-200 but rarely stayed there for long so I do think your experience is on the extreme side.

    The first time I was given Flecainide was at my GP surgery and he administered and monitored me, he was a cardiac specialist though in an earlier life. As my episodes increased I went for RF ablation which worked on the second attempt and I no longer take those dirty dirty drugs thankfully, but they exacerbated an underlying condition so I now live with the consequences.

    Personally I avoid hospital admissions, probably the most unhealthy place you can be, all those ill people around you, most depressing.

    Best wishes CD.

  • One point that may help is that Flecanide should be taken with a beta or channel blocker as, if not, in rare cases it causes ventricular arrhythmias- I wonder if that is what happened to you?

    Agree with the other points raised above- sorry you have had such a bad time of things and I hope your AF settles down and becomes more manageable.

    If you get the correct treatment I think you have little to fear heart wise- unless you have other heart problems not mentioned ?

  • Thank you all for your words of advice and more over your understanding. This is a wonderful forum, my favorite and most informative. I wish us all well.

  • The fear that accompanies tough cases of afib certainly can affect quality of life. I tend to be a half empty sort of thinker, and do see afib as dangerous. It can bring on a stroke or brain bleed, either of which can be life changers or cause death. Mental relief comes from knowing that the anticoagulants can keep stroke at bay, but, keeping blood work within the acceptable range, is also a challenge/concern. Had an ablation 10 days ago; now may want to consider something other than warfarin.

  • I had great relief from my ablation. I hope you do also. Haven't gotten off my melds yet but one day I hope. Best of luck to you!

  • I'm still on my meds, too. Metoprolol & Flecainide. Hope to drop the Flecainide some day.

    How long ago was your said you were still on meds.

  • It was over a year ago. Every time I try to go off my mess my heart rate goes over 150. Not in afib but still way too high.

  • Interesting. Are you on a rate medication, only? Any thoughts from the doctor regarding no afib but fast rate? Svt's?

  • I don't see that you've mentioned having had an ablation. I've had two (last one in May 2015) and my heart works perfectly now. Better to fix the problem than try to mollify it with drugs.

  • I totally agree with you. Afib started 8 months ago; after 14 afibs and increasing Flecainide, I opted for the ablation. It seems so many people, like you, have 2 ablations before the heart is working at its best. Congrats to you!

  • Thanks. My first ablation was for flutter, the second for parox AF - two different problems with different causes.

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