How do you live with AF

Sorry newbie speaking, diagnosed about three weeks ago. In 3 weeks I haven't slept more than three hours and I wake up covered in sweat. I spend all day catching my breath and then i read about people that have lived with this for years. I can't walk upstairs without stopping i'm not eating and my question is how do you do it? My pulse rate is at worst 170, though it fluctuates, I'm sure you get the picture. I'm on digoxin and bisoprolol but they are are not helping at all. At the risk of sounding all dramatic, what do I need to do to, because this isn't living.

Many thanks


35 Replies

  • Robert, first things have come to the right place to get help and support, but please bear in mind we are not medically trained but some, like the volunteers, have a wealth of knowledge which I'm sure you will find helpful. It will not help you, but what you are currently experiencing stems from fear of the unknown and the majority of members have had the same issues as you. In my case, I was reasonably OK and healthy but was experiencing some fairly mild breathlessness. A trip to the GP soon changed all that! After being told I had a AF prompted trawling the internet and scaring myself witless. Physically, I was no different Tuesday than I was Monday, so why the sweats, lack of sleep etc etc etc.......the good news is it does get better, but it can be a bit of a roller coaster journey!

    Clearly you are having some medical support, and not wishing to worry you further, you should find out if you should be taking an anti-coagulant. AF in itself is not life threatening, but it can increase your risk of having a stroke and you ought to check that out on the AFA website. Your GP should refer you to a cardiologist, but that can take time. Once your knowledge gains momentum, you may decide to see a Consultant privately. That is the route I took, and I have no regrets. There are a number of treatment options available, but the best way forward is different for everyone because there are so many variables.

    You will, I know, get a lot of help from this forum......John

  • Hi forgot to mention I am taking Aspirin but thanks for your help. It all seems a bit hopeless at present but maybe that's just the sleeplessness talking


  • Ooooopsss...sorry Bob, but aspirin for AF is not good......there are other heart conditions where taking aspirin is recommended, but not AF.....please seek medical advice maybe that your age and general health mean that anti-coagulation is not necessary yet, but you need to be sure on this....John

  • Did your GP prescribe aspirin after your AF diagnosis?

    Was this for AF or for something else.

    If it was for AF that suggests two things to me. Firstly that GP believes that you should be on an anticoagulant in which case then the anticoagulant must be either warfarin or one of the NOACs. Secondly that the GP is not up to speed. It is over two years ago that NICE withdrew the use of aspirin for AF (it has other uses) and stated that warfarin or one of the NOACs must be used as the anticoagulation treatment.

  • Bob

    You should push hard to see Electrophysiologist (EP). EPs are normally cardiologists who have specialised in the electrics of the heart. You have an electrical problem. If necessary see one privately. Likely cost £125 to £300. There are many other posts on this.

  • I will second that.

    Without the support of many wonderful people on here.

    I think I'd have gone crazy.

    Support, understanding and they are just there.

    Thank goodness for them all.

    Good luck. Keep calm.

  • Sorry Bob, Dashing about at present so this is short. John is one of my success stories so listen to him. He was just as bad as you when he first came here. The only thing to fear is fear itself is an old saying but true where AF is concerned. I must also comment that we are all different and some people do not suffer such bad symptoms, in fact many are unaware they have AF.

    Go to AF Association main website and read all you can as knowledge is power. Try to control those feelings of panic which we have all been through. Try to live a better life. Many people find that avoiding all stimulii such as alcohol, tobacco etc reduce the reliance on meat products and move to a more plant based diet, losing weight etc all help and in fact it has been said by some experts that rather than limiting life, many AF sufferers actually live longer than their peers thanks to life style changes. Look on it as a chance to change for the better. There are many worse thongs to have.

    I'll look back later and see if I can add anything else but do speak to somebody about anticoagulation as this is VERY important. There is a calculator on AF A site "CHADSVASC" where you can do your own calculation as to your risk structure. It is important to be honest and even if say you have normal blood pressure but on tablets this still counts as a score. Age comes into is as well and I'm sort of guessing that 1962 is a significant year in which case you won't score on that front just yet.


  • Hello Bob,

    I'm so sorry you're feeling this bad.

    Everyone experiences AF differently. It seems to present in various ways and affects us all differently. So the people you read about living with it for years will usually have a drug combination that brings it into some sort of control. It often takes some trial and error with the drugs as it's not a one size fits all scenario.

    I'm nothing like you as my worst was a 90 minute spell of it but I can only describe mine as really violent at the time. Scared the bejeebers out of me! Not something I could have put up with longterm.

    Can you believe, some people are symptomless and are surprised to learn they have AF!

    There is probably someone who has experienced what you are describing and will reply to your post with a coping strategy and advice for you.

    I don't know your age, general health or if you have any other heart condition but if you're otherwise healthy, have a look at 'vagal manoeuvres' on google and look into magnesium citrate for AF.

    I swear by magnesium supplements and one vagal manoeuvre method that almost always works for me in stopping irregular beats, is to continually cough hard until it stops. Doing things like that give the vagal nerve a jolt and can and does revert people back into normal sinus rhythm.

    Are you waiting for a cardioversion? Or to see a consultant?

    What have your doctors/consultant said regarding a plan of action?

    If I were you and feeling that bad I would get myself off to A + E.

    Sorry I'm not much help but I don't want to leave you with no reply as yet.


  • sorry Bob- I must have been replying same time as other Bob!

  • I think you have hit the nail on the head. This has hit me for six but at present there is no plan of action except more tablets. If they were helping I would feel happier. But some of the stuff you read on here and elsewhere can be quite scary. Especially if you haven't slept. But thanks for your help. A little less scared than before


  • Well that's definately a move in the right direction.

    I assume you are getting this help from your GP. Some GP's are not necessarily AF savvy which is why you should ask to see a specialist. Even some cardiologists are not experts on AF, so you might think about finding an EP (Electrophysiologist) who really are the AF experts......lists of these can be found on the AFA website as can local support groups........Once you have had a chance to digest the info you obtain from your post, I'm sure you will get a clearer picture as to how you need to move forward, but you may have to push a bit......

    Best wishes.


  • Bob, I hope you've seen or about to see a consultant. The one to see is an EP not a regular cardiologist.

    That's an Electrophysisist. A cardiologist specialising in the heart electrics which control heartbeat.

    I and several others on here, paid for a private EP consultation initially. As I said before, mine scared me witless and I thought I was at death's door so there was no way I was waiting 8 weeks for a posthumous NHS appointment(or so I thought at the time).

    I looked up EP's online (you can actually do this on the AFA website) found the name of one at Harefield hospital which I was happy to travel to, rang the private patient department and booked myself an appointment with a wait of 2 days! I was lucky as Harefield already had my notes from previous fruitless investigations, before my AF episode, so I circumnavigated the GP referral route.

    An appointment alone costs ~ £250.

    At least that way you know you're in the right hands.


  • Welcome to the forum Bob - being knocked for six expresses it very well indeed. As others have said, you need to see an EP who can assess you and plan the best way forward - because there absolutely is a way forward. Each of us is different and you may need a drug change or other treatment to provide you with the best quality of life. I needed three changes before I got peace from the pesky episodes (I have paroxsysmal AF) and now lead a fairly normal life.

    When I was first diagnosed, I assumed the worst - every symptom and every awful outcome would befall me - scared myself silly worrying. Read all you can but remember not all of it will apply to you and your particular circumstances.

    Anxiety is a major factor to contend with and we all have ways of coping with our fears. I found that as time passed and I coped with the episodes, they became less scary and, I suppose familiarity bred contempt!

    You may live where there is a local support group and there is also a patients' day in Birmingham in October - details and lots of other info is on the main AFA website -

    Please do keep in touch and ask any questions you need to - someone will always have an answer.

  • Hi Robert

    You've had some great replies, just if I may a personal story and perhaps more importanly a personal plea.

    Let's start with the plea, whomsoever prescribed you aspirin for AF is way way behind the times, it's not recommended at all, and it will NOT prevent an AF stroke, get to a specialist quickly, and if you need to be anti-coagulated, then get onto a NOAC or warfarin quickly.

    Now the personal story, and please remember we are all different. I was diagnosed with AF just on 4 years ago after an episode high heart rate all the symptoms of a heart attack which you are getting now. The ER doctor told me she found is strange I did not know I was in persistent AF and what did I expect but the occasional episode, and this was the first time I had heard about despite two "full medicals" in the preceding 2 years. (different story but it's those ruddy awful BP Machines, don;t get me started)

    Looking back 4 years before that something happened which with hindsight I now know almost for certain that I was in persistent AF then, so it's now been probably not less than 8 years in persistent AF.

    So how do you live woth long term AF? well the answer is not day by day, but in fact just with some adjustments to my lifestyle, and trying as far as possible to not let it control my life.

    Mountains for me are a no no, I am never going to climb Mount Ventoux on a bike even up the easy route and taking the whole day. I have had to cross Machu Picchu off the bucket list, too high and all the airports to get to it are even higher. Not with AF that (in my opinion) would be silly

    But let's see last year I solo travelled around China by train, I spent New Years day this year coming down a very long white water rafting river on a volcano in Costa Rica, and I've not long returned from France where I had surf lessons along with my grandchildren.

    What I am asking you to take from this is simple.

    It will get easier and better.... With your medical advisors you will find a way to control your AF.

    It's not the beginning of the end, or even the end of the beginning, it's simply another step in your life that you will cope with, conquer and then move on. OK maybe the stunt double days are behind you, and maybe no more professional rugby or cage fighting, but hey it was time to retire anyway and move on.

    You will move on, this is a phase whilst you fight back control of your body and your life.

    Be well


  • Beancounter, how do you control the rapid ventricular rate of your persistent AF? I imagine it's exhausting to be in continuous rvr

  • I do not have rapid ventricular rate, only persistent rapid atrial rate, so less exhausting, but yes heart only works at 70% or so, which is why some things are avoided.

    Be well


  • Ian

    Is that a typical reduction to the heart capacity for someone in persistent AF?

    Is this in any articles or publications?

  • Hi Peter

    Not seen it published anywhere, but certainly what my EP told me, and is a figure bandied about at conferences by various people.


  • OK.

    I only heard the percentage quoted for the first time when one of the doctors in the heart valve consultant's team said last Friday (in response to my question re fatigue, etc)that I was suffering a 30% to 40% reduction in heart capacity so it wasn't surprising. I only though afterwards about asking him was this a generic (ie typical) number or had it been assessed from the various tests that I have had done in the last 2 years. I had suspected it was generic.

  • About 8 years ago I was a smoker. One fateful Saturday night there I was ironing when all of a sudden I thought I was having a heart attack. I was rushed into hospital with pneumonia and copd. For one month they kept me in and upon release I was told I had chronic asthma. I'm hoping you guys realise where this is going, for eight years I have lived with asthma. It looks to me like I'm one of those people that have lived with AF and not known. Just a theory but it fits. Also it explains why they wont prescribe warfarin. Anti asthmatic drugs and warfarin don't mix

  • What about the NOACs? I don't have a clue whether they are compatible or not.

  • I have chronic asthma and I have taken Warfarin and now on a NOAC but beta blockers are 'not allowed' quote from my cardiologist! Not surprised you feel rubbish on beta blocker AND digoxin, btw digoxin is usually only prescribed for those with 'a sedentary lifestyle' so unless you were already unable to climb stairs easily I'm a bit surprised at that.....

    Most people here seem to assume you are suffering from severe anxiety but I like to be different (and have suffered enough from symptoms of serious illness being put down to something else) and I am going to suggest that if you are breathless and sweating at night you should go to A&E if your GP is not referring you back to hospital and actually A&E might still be the best place because in my experience they don't make assumptions about your illness - I was admitted with abdominal symptoms and wondered why I had a CT scan of my chest, turned out I had a pneumothorax as well!

    Getting tired of saying (grumpy grandma, sorry) just because you have AF does not mean ALL your symptoms are caused by AF!!! Please go back to a doctor and make sure. And anyway if all your symptoms are down to shock/ anxiety you should have treatment for that in the short term.

    Best wishes, hope you feel better soon.

  • Bob, check the paperwork on Bisoprolol, I'm sure they should not be taken if you have a history of asthma.....there are other alternatives, including calcium channel blockers..... John

  • NO beta blockers should be given to asthmatics.

  • I have been asthmatic since I was four years old I was diagnosed with AF when I went into hospital with appendicitus. I was put on calcium channel blockers and warfarin. It turns out I have had AF since the 90s. and all that time the tachycardia was put down to a side affect of long term steroids. I am on Diltiazem MR 60mg and Tildiem LA 300mg for my heart and prednisolone 10mg for asthma, I also have other meds as well. The biggest problem I have is with sleep as I seem to sleep most of the time, but my cardiologist and GP think thats ok for me and my situation. Lynn.

  • I too have copd and Asthma; beta blockers are absolutely "no go's" for Asthma. Take an alternative and you will find everything improves.... not cures but definitely makes things tons better. My change was to Diltiazem.

  • I have been an asthmatic since I was 11 years old...I am now 64. When my persistent AF was diagnosed 6 months ago, I was put onto warfarin immediately with no ill effects whatsoever. In fact, my asthma has improved...I'm not sure why. My doctor had no hesitation in prescribing it and, once I've had my cardioversion in a few days time, he says I can go onto one of the NOACS.

  • Hi Bob -sorry to hear things are rough for you and everyone has given you excellent advice. Sleep deprivation is really horrible and it doesn't take too much lack of sleep to feel that we can't cope. I remember when I was diagnosed - it felt like my world had shifted on it's axis and I was very anxious and scared and I wish I had known about this forum earlier but heyho - folks have been really useful since. Very luckily for me I seem to have had a successful ablation (June - touch wood) but still on meds which I am coming off but it does feel like a miracle. But I had the same symptoms as you. As others say make sure you get referred a cardiologist/EP. It's also difficult living with more than one condition and trying to manage it all especially when you are taking loads of meds.

    However there is light at the end of the tunnel ( and it's not a train!) so try not to lose hope and be kind to yourself :)

  • Just some practical suggestions which may help you sleep. Try drinking peppermint tea in the evening but not too late to avoid the need to pee!! One fellow forum member suggested having 2 additional pillows forming an inverted V from the headboard. This supports shoulders and arms and helps to stop thrashing about. It worked a treat for me. Some folk try TV (try the Parliament channel!!) or radio on a sleep setting as this can create a diversion which can also help. iPhone/Pad users can access free apps for sleeping aids with a variety of soothing sounds. Often these various ideas will help break the mould and become uneccessary after a while. No booze or extra medication though!!

    I will shut up now, its just that like so many others, I was there once.......but now I'm in a better place......

  • Try putting your bed on blocks so it's at a 20 degree angle. SA consultant said that angle is usually the optimum and more relaxing than pillows.

  • The blocks at head or foot of bed?

  • At the head of the bed.

  • Have you cut out caffeine? It sets mine off.

  • Please see my reply to the question about Warfarin. Also replies to a previous poster by P0rtnahapp1e.

  • Unfortunately, one of the first things one experiences with AF is anxiety, and anxiety begets AF, so you end up in a vicious cycle. Please do see an EP ASAP and educate yourself about AF. Once you learn more about it, the anxiety will lessen as you learn that it is not a death sentence and you can live a normal life with it. But putting away the anxiety that we all feel at first is very helpful -- even if it takes medication to lessen the anxiety. You'll be fine; as BobD says, it's not going to kill you and you can indeed live with it, even without all the medications that doctors want to prescribe. Think positive and learn all you can!

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