Living with AF - my story

This is my first post. I am a retired depute head teacher, aged 64, who had a very busy job and usually plenty of energy. Just over 2 years ago I took a dizzy turn while out for a walk. My wife called the GP on my return and he thought that I had an arrhythmia problem, but was not too concerned. I seemed to have recovered. The next night, however, I woke up from a nightmare, in the early hours, with my heart racing - a strong pulsing in my stomach area, indigestion, feeling faint, face flushed and pressure behind my ears. The out-of-hours GP was called, diagnosed AF and I was taken into hospital. I was given 2.5mg bisoprolol and sent home the next day. The beta blocker made me very tired, listless, probably a little depressed and my heart rate dropped. Everything was more of a struggle. My GP eventually reduced the dose to 1.25mg and I felt more myself. To do this I had to stop the beta blocker for a couple of days and my symptoms immediately returned.

I was doing well until March this year and felt that life was returning to normal, when the symptoms returned again in the middle of the night. I took more beta blocker, which stopped the symptoms and went to the GP, who did an ECG which was normal. She advised me to go to the hospital if it happened again.

In April I woke again in the middle of the night, from more nightmares, with racing heart etc. and ended up again in hospital. My heart rate was 180bpm and they took a while to get it down. I was kept in monitored, kept on 1.25mg bisoprolol with the addition of 125mg digoxin and apixaban (2X5mg).

I stayed on this regime for several months. I was very tired and still frequently felt a strong pulse at the top of my stomach. My heart rate dropped into the 40s.

I was due to get a cardioversion but in the pre-checks they found that my heart was back in rhythm and it was cancelled. In a follow-up appointment the doctor suggested that I might also have a sinus arrhythmia. They stopped the digoxin and bisoprolol and put me on Flecaninide. I took one tablet and felt that my heart was leaping out of my chest. This continued for several hours and was alarming. The GP stopped it immediately and has referred me to cardiology again. In the meantime I am back on 1.25mg bisoprolol and also remain on the apixaban.

My heart rate remains low, I still feel very tired and feel that I have low blood sugar, needing to eat to get energy back. Exercise, like cutting the grass exhausts me and seems to provoke symptoms a few hours later. Fortunately my sons now help me out with the garden. Since starting the apixaban my waist size has increased over several months. My stomach feels swollen. I am not sure whither this is coincidence or not.

I have to have a short nap each afternoon and pace my days. If one day is busy then I will be very tired the next day. The pulsing in my stomach area continues on and off but my heart rate doesn't seem affected by the pulsing. Is this ectopic beats? Using a 'Fitbit' I can monitor my heart rate and even with exercise it does not go too high and very quickly drops back down when I rest. Indeed on a recent holiday I woke one night with all the usual AF symptoms except that my heart rate was so low that the 'Fitbit' could not detect it. I rested ate a little chocolate and I recovered. My first midnight feast in over fifty years!

I would appreciate any thoughts on my experiences. I have gone from being active to achieving very little most days. I am due to get a 24 hour ambulatory ECG this week.

Having read a few posts since I joined the group I realise that experiences of AF vary markedly and especially reaction to treatments. The condition is certainly life changing.

45 Replies

  • Hi Outofsynch and welcome to the forum.

    I suppose the one thing not mentioned, that I certainly would have liked to have seen, is that you are being treated by an EP (electrophysiologist) and not a cardiologist.

    Bisoprolol is a "zombie" drug for many of us, (although to be fair some tolerate it well) and there are alternatives, there are at least 6 or 7 other beta blockers and calcium channel blockers which could be used.

    RE weight gain? that's probably due to the tiredness, you don't realise how inactive you 'become when on beta blockers, it takes real effort to even go back to "normal".

    The ECG will help, but get in front of an EP if you can

    Be well


  • Thanks Ian Interestingly my weight has not increased, just my girth but I agree since I am less active I should watch what I eat. I have of this morning an apt with a cardiologist soon. if not happy will ask for a private referral to an EP.

    Best wishes


  • Hiya outofsynch,

    This may seem a bit trivial, but if you haven't gained weight but your waist is bigger, and you'd like to keep it trim, I would highly recommend Pilates. Especially if you get Physio-led Pilates.

    I am unable to do Pilates at the mo (exhaustion), but when I was able, it helped keep the core muscles strong. This is really beneficial for your back, and through better posture should preserve your spine better. We won't even mention the benefits of the flat tummy...

    You mainly do Pilates lying down, it is not strenuous, and is very unlikely to set off any symptoms. And it takes concentration, so you don't feel bored.

  • I agree withBoombiddy. I do a physio led class and my tummy muscles are much stronger. I had done pilates before at the leisure centre but now realise I wasnt doing it correctly. Also because it is physio led I am only given exercises that are relevant to me and my problems. Good luck. X

  • Welcome but to a place we'd all rather not be in. I could talk to you for an hour with thoughts on what you have written. A good and informative post. You must have been a good teacher.

    Firstly as Ian says you must get referred to an EP. GP should do this. I suggest you look at specialists on main AFA website and select all those who do AF ablation as they will all be EPs. An EP is a cardiologist who has specialised in arrhythmia ie the electrics of the heart. I suggest you do your research on the EPs (worth travelling a bit) and I suggest you go privately and pay for an initial consultation taking all your notes and letters with you. This will cost say £150 to £400 but you will get to see the EP themselves, have more time in the consultation and you will save quite a few months.

    Secondly invest in a Kardia (aka AliveCor) which you can use as an accurate way of measuring your heart rate and it will give you an ECG which you can share. Set recording time to 2 mins. Also invest in a proper cuff blood pressure monitor suitable for AF (there aren't many but one is the Microlife WatchBPHome A (A is model designation for AFib). Suggest you take HR and BP morning and evening at same time as that will give EP trends and background info. Also intermediate ones when you are having an incident.

    You will feel tired not only because medicines but because of the AF itself. You can effectively lose 30% to 50% of your circulation / benefit (loosely) when in persistent AF.

    I'll add some more later.

  • You have already learnt to pace yourself which is good. Don't be worried about going for a sleep. If you feel tired your body needs a rest to recuperate. I have one every day.

    Try and go for a walk every morning. Better to walk slower and get further than going quickly that will help your health in so many ways.

    Cut down on the quantity of food. Also cut out key triggers / exacurbators such as sugars, salt, processed foods, ready meals, takeaways (occasional one is ok). MSG is bad. When you start looking at labels you will be surprised as to how much salt and sugar is in them. Look at salt content of mince. Alcohol is another one though it affects some and not others. I used to drink less than government limit then halved that and then following discussion with my EP stopped completely and that also helps keep down weight. Suggest you don't go on radical diet.

    BTW it will be 125mcg of digoxin. 125mg would soon kill you!!!!

    As your stomach is swollen weigh yourself first thing each morning to see if water retention is contributing are your legs and feet more swollen than they used to be?

    Look on the main AFA website. There is loads of good information and publications there. Print off copies or get them to send you the booklets. I am very in to computers but having a printed copy of key ones is so useful and you can highlight and make notes.

    Just by way of background. I was just 60 when diagnosed in persistent AF. Had one ablation. I have other heart issues. I always was rushing around and cramming things in!!!

    Hope you aren't overwhelmed!!! Would write more but having problems with my computer so having to write everything using the iPhone 5.

  • Thanks again is so useful to share with others and learn of their experiences, whilst recognising that we are all different. I do seem to be very intolerant of drugs. Legs and feet not swollen although the soles of my feet have become painful. I am going to see the GP about this.

    Best wishes


  • As my dad used to say life's changed not ended. You may not be where you thought you'd be but you can only move forward from where you are now and you can only look back to help you moving forward. He even said this when diagnose with cancer where the outcome was only terminal though he lived for about 4 years after that. Keep your chin up.

  • Support of family and friends has been wonderful and such a help. You realise how much you mean to others.


  • After seeing privately first time you can then switch to their NHS list.

  • Thanks Peter. Your first point is well made. I have purchased a Microlife Watch BP. It suggests that I am in AF a lot of the time.

    Best wishes


  • Yes, we all experience AF and medication in different ways. Thank you for your interesting account. I hope you'll be able to find a regime that will improve you and you'll get some energy back.

    In addition to a 24 hour ECG, have you an echocardiogram scheduled?

  • I had an echocardiogram when first diagnosed and it was OK. There was talk of repeating it but they don't think that is necessary. Alasdair

  • That's good! I think it can take a while for anything to alter. I gather the left atrium tends to enlarge with AF but deterioration diminishes if there's no AF.

  • If they offer to do it then take it. For the last two years the maximum interval for me is 6 months and they can see how things have changed.

  • Yes as others have mentioned, try to ascertain what triggers your AF. Beware of food. Best to have it little and often rather than a large meal, especially at night. Do you get reflux? If so, rule out hiatus hernia.

    Not all medicines suit us, we are all different, there are usually different choices so be prepared to switch to find ones that suit you.

    Yes AF is very scary but it won't kill you ; get it under control and then learn to live with it. You aren't alone. Be positive. I value each day and make the most of it. All this is profound stuff but most sufferers will know what I mean.

  • I take Nexium for stomach problems. I am starting to realise what AF means for my life but not sure that I have got the correct medication yet. I will be proactive. Alasdair

  • Its a good forum to belong to for excellent advice and loads of comforting words. I can relate to the teaching bit, I was one but had no problems until I reached 71.

    From what you described this is similar to how my episodes are, digestive problems later clarified by a Gastroenterologist as IBS, my stomach chugs along at the same time as AF.

    As advised previously, its better to see an Electrophysiologist rather than your GP. I have to travel a long way for one, but in the meantime I am under a local Cardiologist.

    You will learn lots from this site and I am sure you will do your own research. We are all different when it comes to any reactions from medications but we are all the same when it comes to wanting to get and feel better.

  • I agree with all that you say. Alasdair

  • @ultramarine You are right Seeing an EP is the best idea. After ablation and normalization of sinus rythm and no afib, but remain on low dose meds, I see EP every 6 months for a checkup. He is 129 miles from where I live--but well worth the drive a due to his expertise and excellent help/

  • One thing I feel is worth mentioning- you seem to have AF at night and this may well be the vagal type of AF ( which I have). It is linked with the change in the nervous system when we sleep- also can be affected by heavy meals because of connection with vagus nerve. It is worth you researching this online to see if it fits your symptoms.

    The significance is that if it is vagal AF one shouldn't have beta blockers or digoxin as they make the condition worse.

    I found three studies which support this and , when helping with the AF pathway re design for Kent Surrey and Sussex ( as patient rep) I presented these studies to the Cardiologist leading the group and he must have thought they were good studies as he incorporated this ( not having beta blockers or digoxin) into the guidance re AF for the whole area.

    I have found gentle exercise is very beneficial and ensuring enough potassium in diet ( not supplements) also very helpful

  • Thanks RosyG that is very interesting and I will read more about vagal AF. I read somewhere recently about research on giving electrical impulses to the vagus nerve which is helpful in a number of conditions. Alasdair

  • Hiya,

    I agree with your advice @RosieG, but since I too am just learning about AF, I wonder if there is a reason no one has mentioned the possibility of obstructive sleep apnoea setting off outofsynch 's symptoms? I am sorry if I am way off-beam...

  • I suggest magnesium which helps me greatly. Can I ask why not pottassium supplements Rosyg?

    Vagal AF appears relatively little understood. What have others found helps

  • I know about magnesium and will ask the GP. Alasdair

  • Yes I have Magnesium supplements too Elaine- the difference is that with Magnesium you just excrete it quite easily if too much is taken ( and will know about it!!) Potassium, however, is much more dangerous, unless in food, and can actually cause arrhythmias if too much is taken. Slow release potassium is given by tablet when people are losing too much because of having to take diuretics but, in general, you wouldn't take it by tablet.

    I was surprised by how much potassium is needed daily but things like jacket potato, coconut water, bananas, and vegetables are all excellent

  • My potassium and mag both for the past year stayed on the low end of normal. Like right on the mark. Have had 7 sets of labs since February. They finally put me on potassium and slow mag once a day . Pvcs and pacs have essentially gone. I am also 11 weeks post ablation.

  • That's great- I think it's really important and you are being monitored so the potassium s not risky whereas if people start taking it and are not monitored it can be dangerous

  • I think we all experience AF in different ways, so it is good to compare notes. I am now aged 61 and have always been quite sporty. I had persistant AF throughout 2015, I never felt it, but I had dizzy spells and found myself flagging on walks and bike rides, despite clocking a very high (and erratic) pulse rate. I monitor my pulse with a Polar RC3 GPS, during periods of exercise. It uses a chest strap. On BBC "Trust Me I'm a Doctor" (or similar programme) recently, they found that the chest strap devices are far more accurate for pulse than those just sitting on the wrist.

    I had cardioversion in October 2015, but the beneficial effects lasted only about 4 days. After that I was put on Bisoprolol for a while. I gave it about 2 weeks, but it totally wiped me out, so I took myself off it, (this is NOT a recommendation, as we all have different experiences) I continued to exercise, but at a lower level than normal.

    I had ablation in January 2016. As some of the posts indicate, it can take several months to settle down after that, and I went into atrial flutter for a couple of weeks, but came back out again. Things have steadily improved for me, and I am now exercising properly, though I have to be wary of over-doing things, and need some easy days after a hard day, plus I have had the odd instance of high erratic pulse.

    Your nightime attacks are different from my experiences. Maybe investigate ablation. Quite a lot of posts speak highly of the results, and it has more or less worked for me. Good luck.

  • The GP says that my pulse is strong but irregular. I have mentioned ablation to my GP who didn't rule it out. Seemingly I have to experiment with other medications before being put forward for one. Alasdair

  • I would emphasise - push to see an ep. You do not necessarily have to experiment with drugs. My ep gave me a choice, drugs or ablation and I chose ablation in 2013 and it worked for me. I am back to normal and can walk, dance, garden and do normal stuff for my age - 67.

    So SEE AN EP.

  • The GP is out of date. It used to be that you had to have two failed drugs before an ablation but NHS England changed that a few years ago so that people can be given an ablation straight away without drugs. That's why it is important to get under an EP ASAP.

  • PeterWh the numberof failed drugs should not be the que to get an ablation. This is a health idea not a medical system protocol idea. If you pay for a brief subscription to the web site: uptodate .com you can read about all the drugs and their benefits and risks-- this is based on many studies from all over the world. If you read this you just might decide that the ablation is better and safer. I realize that you have a different medical system than the usa. Here the ep offered me a choice ( MY choice) meds or ablation. At our first consult he said he thought ablation would be better for me. He was right. Also my successful recovery is due to his knowledge and expertise and combined with my own input as to supplements , diet etc. and all the massive research of people much smarter than us that i and my husband have poured over with the occassional help of a medical dictionary, trying to find solutions to this problem.

  • Here in the UK there are a number of differences.

    Firstly each of NHS organisations in the 4 home countries have different rules re ablations (and other things) and then in addition each of the CCG (Clinical Commissioning Groups) have there own further criteria. Up to about 2 years ago it was the case that if you had AF then you had to have two failed drug regimes before you could have an ablation.

    With medical knowledge and advances (and a better understanding of the detrimental affect of log term use of some of the drugs) NHS England issued new guidance notes which effectively stated that at the point of initial assessment an EP could decide and offer a patient an ablation even without trying drugs. Obviously it was up to the patient and EP to discuss risks, etc of both options.

    However many GPs, some general cardiologists and many patients still think that you have to have two failed drug regimes.

    Hence my comments.

  • I am writing from Scotland but will push again for an ablation.

  • Why not put up a new post and call it something like I'm in Scotland - Advice on Getting an Ablation then write the key information. There are a few on here from Scotland and they have had to navigate through that maze with its peculiarities.

  • I just found out there was a red blood cell magnesium test that should be the test- not a serum mag. Know anything about that?

  • Good luck trying to get any NHS doctor to do that! Only private labs will do it and you need bloods to be taken, usually through your GP clinic and that often will incur a charge - depends on each practice.

    But you can get it done - I think Dr Sarah Myhill has a link for testing on her page.

  • @outofsynch See an ep for an evaluation This specialist knows much more that your gp does not know.

  • The guidance on this has changed so you can choose ablation first - but it should be decided on how your symptoms affect you as there are serious risks as I'm sure you know.

  • I have just lost my long written essay. Should not have moved to the previous page.

    In short I urge you to have an ablation as soon as possible. The success rate is much higher than if you have an ablation after progressing into persistent Afib.

    I too had night time episodes. Amiodarone stopped them but it is not a drug one can take for long as it is very toxic. I have to take it 10 weeks after the ablation. As it is only 6 weeks since the ablation I am waiting to see if it is successful. The success rate is 75% to 80%. The EP said that it is possible that I may need another one. That one I shall most probably have on the NHS.

    I didn't hang about after it was established that I had AFib after having had an A. Flutter ablation on the NHS. After 10 weeks I started to have AFib on a daily basis. I just was not prepared to wait on the NHS because I was afraid that my intermittent AFib would become persistent which is harder to treat and the ablation success rate is lower.

    Do take care of yourself and please don't waste time so that you have a greater chance of getting better sooner.

  • Thanks I appreciate all the support and advice I am getting. It is good to know that you are not alone. Alasdair

  • I have not been reading posts of late but it is likely the vagus nerve and how it is affected by the spine is seldom discussed. One USA chiropractor I know believes many instances of AF are because of this and he has had good success eliminating AF by correcting this problem. He thinks our lifestyle is causing more people to have AF. We sit at desks for long periods of time and now we spend lots of time on computers and other devices. We end up with a bump on the neck just above the shoulders.

    I have messed around with AF for three years. I now definitely know mine is caused by spine issues. Maybe many instances of AF have nothing to do with the heart and this is why drugs, supplements, diet and ablations have spotty success. It is likely that the heart can be impacted by these to mitigate vagus nerve input but maybe this is not the best approach. I can start and stop my AF by positioning my neck and back. It takes some practice but most times I can do it. I have an EKG recorder so I know I can do this. Beds and pillows are are a real challenge. Some are fine but others are not.

    As I mentioned in previous posts, I have been experimenting with treatments using Scenar and I am changing what is happening but have not succeeded in eliminating AF. I have only been trying back and neck treatments for about a week. Before that, I was trying the recommended treatment for the heart. But if my heart is not the problem, maybe this is why this treatment did not help.

    Take a look at this UK site for some insight into Scenar. I just found this site. I don't think AF is mentioned on this site.

    I do go to a chiropractor who uses Scenar and I also purchased my own device. My chiropractor has not used Scenar for AF but has tried some things. If you cannot find the correct treatment and how often and for how long it needs to be done. it becomes a bit of a crap shoot. I will keep trying. If I ever achieve reasonable success, I will post what I did. If anyone else has suggestions, please give them to me.

  • I agree that sitting at the computer and bad body posture can contribute to heart problems. Actually, typing on the computer can cause stress and high blood pressure. Certainly, in my case. I do walk, some yoga, mindfulness and stretching exercises and I managed to straighten my back. I don't have a bump on the neck but my back tends to be hunched which I straighten out everyday. I am much straighter than I used to be in my teens and twenties. In fact, after my exercises I do achieve very good body posture and my muscles feel much more relaxed around the shoulders. Unfortunately, an osteopath did damage my shoulders and collar bone. So I have sclerosis of the collar bone on the right side but through exercise I have managed to keep my shoulders balanced and they no longer are at different levels.

    What I do want to stress from my last post is that it is important to make sure that the EP has a very good reputation. I know that mine does. In fact, he even went on further to learn from the Hamburg Clinic to do ablations in a scientific way whereas some other EPs do not. It can also be seen that the EP in Plymouth went to America. Plymouth has a very good reputation and so does Exeter. Unfortunately, at the moment funding for ablations has been stopped. In London under which my EP studied is a Professor Schilling who is renowned in medical circles.

    I diplomatically asked my EP how successful has he been. He answered that he has been successful with all paroxysmal atrial fibrillations and success with persistent AF but failed only on two persistent AFs because they had been long term. Obviously the success rate is that much lower.

    Unfortunately, a repeat ablation is often required for paroxysmal atrial fibrillation. Hopefully, I will not need it. So it will take time before I can say with certainty that it has been successful for me but the prognosis looks good as there were no complications with both ablations for AFlutter and AFib. If a patient has other conditions then there may be some complications but not necessarily. Again nearly everything depends on the skill of the EP.

  • My last ablation was Cryoablation. I believer before that it was Radio Frequency Ablation.

    The above websites give good explanations and are very informative.

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