Hi all. I met with my cardiologist this week and he confirmed I have enlarged heart and permanent a fib. I have been feeling quite good over past couple of weeks because I have not had the terrible nausea and sicky feeling I was getting on most of my meds. As I do not have any furring of the arteries the advice was that no shocking heart back into rhythm or any other procedure, so walk as much as you can and get back to swimming...I was a big walker and swimmer before this, and you will get stronger. I will see him again in a year, is it just me or is that the norm? In between see your GP and cardio nurse. I have not had cardio assessment due to Covid so still waiting for this to happen so not sure of how much to push myself. I see people on here talking about having an episode an want to ask about that. On a couple of occasions I have felt quite good and pushed myself to either walk further....up to 2.5k or tried to do a bit too much in the house or garden and my heart rate has soared.....would this be considered an episode? Well today again I think I might have overdone it by walking my dog then going for some shopping and tonight my heart is racing...I have an EKG machine. It is up to about 160 and coming down to bout 130 after resting g for 20mins....is this an episode? Should I talk to cardio nurse on Monday if it is still happening or if I rest up do you think it will co.e down by itself. I dont like keeping calling my GP and nurse and also worried that they will put me back on some of the meds that made me feel ill although my cardiologist did day they would not put me back on them...just worried at what else they can do. Xx
Permanent a fib: Hi all. I met with my... - Atrial Fibrillati...
Permanent a fib
If you have permanent AFib, in general, you don't have 'episodes'. Your heart is doing the same thing all the time just at different speeds.
I'm not medically trained but, as I understand it, your heart rate should be controlled by drugs in order to avoid damage from overuse. There are a lot of drugs they can use. The issue will be to find the right drug or mix of drugs that control your heart rate without too many side effects.
Your heart rate will increase with exercise - that is what is supposed to happen - typically, your resting heart rate should be 60 - 100 and maximum heart rate (when exercising very hard) is often quoted as 220 minus your age. So, based on the figures you give, it sounds to me like your heart is going a bit fast.
I hope you are still on anti-coagulants.
I am still on warfarin. Xx
I have permanent AF and have done for sveral years. I take a small dose of a betablocker to keep my heart rate down. One advantage of permanent AF is that you don't have episodes. When people use this term they mean a period of time during which their heart goes into AF from NSR (Normal Sinus Rhythm) until it returns to normal rhythm again. When this used to happen to me I knew immediately when an episode started as I could do very little except sit or lie down until the episode was over.
Now in permanebt AF I live a reasonably normal life. I walk the dog every day, do the housework and shopping but I know my limitations. I can't carry shopping home as I live a mile from the nearest shop so have to go shopping in the car. I find walking up hills tiring and I get out of breath so have to go more slowly than I used to. You need to increase your exercise gradually so that your body can get used to it.
I was also due to see a cardiologist at the beginning of this year but it was cancelled because of Covid19. It can't be helped. I don't know what difference having an enlarged heart would make I can only tell you about my experience and I hope it has helped.
Thanks that is helpful. I think when I feel good I do try to do too much. Not sure about the enlarged heart bit either I just assumed everyone with permanent afib had that mmmmm! I am on beta blockers linisprol. Xx
I think the heart remodels itself with AF and particularly permanent AF. I think it is usually the atria that are enlarged, not the whole heart. From what little I know, it’s unclear if atrial fibrillation is a cause or a complication of left atrial enlargement. I'm not a medic but I don't think it is necessarily something to be too worried about.
Let your cardiologist do the worrying! 
Ah that makes sense by what cardio said and lucky have no furring in arteries. I seem to be developing a pattern though: do ok for a wee while, manage to get out doing short walks, push maybe too hard then heart races and takes it's time coming down. GP prescribes digoxin which makes me feel sicky but gets me back to normal heart beats ie between 60-90, come off the digoxin and fine fir a bit. Wo der if I need higher dose if beta blocker. Will monitor today and talk to GP tomorrow. Worried because have to stop warfarin today as getting endoscopy on Thursday but worried about heart rate as getting tooth out tomorrow, not sure if high rate will stop that . X
It's 5 years since I was found to be in Permanent AF. My resting heart rate is between 70 and 110, which is just beyond normal. The only medication I have for heart related matters is Warfarin as I've had both rare and very rare side effects from beta-blockers, which have caused both emergency admission to hospital, painful skin rashes, and intolerance to some of my previously favourite foods, such as grapes, bananas, oranges and tomatoes.
If I exercise in any form, e.g. walk, do the garden, etc my heart rate increases, as it would for a person without AF. But no, it's not an episode, it's just the heart beating faster because I'm no longer sitting still. Nothing to worry about.
Hi Thomas45. I was not so much worried about it rising although it was up to around 160. It was the fact that even after resting for at least half an hour it was still up then after an hour or so got it back down but shot right up agai when I moved about. Still fairly high when went to sleep. This morning it is way back down but feeling that when I move about I am taking deep breaths but so far seems to be normal heart rate. X
Thomas45 meant to say that I did not gave such bad reactions s to.meds but did suffer badly from nausea and very sicy feelings so that moving about was not an option for large parts of day. Funny enough my favourite foods are as yours ex not not eating a lot of bananas at moment due to calories! However, a punnet of grapes a week, and copious amounts of tomatoes and a few satsumas ate all a big part of my diet. Might have to look at that.x
I don't regularly monitor either my heart rate or my BP, nor do I have medical qualifications. I would have thought, however, that you are pushing yourself a bit too much, and your heart needs longer to rest.
Thomas45, exactly what my partner said and inside I do know. I am finding it hard adjusting as I have always been a busy healthy individual with lots of energy and swam, walked, pilates etc. Now a 15min walk and walk round supermarket knocks me out. Please tell me this will.get better! I have not had cardio assessment yet and hoping this will give me guidance. Cardiologist said I can go back swimming when pools open but methinks pilates us out. Not good at being patient. Lol x
Do any exercise you can, as often as you can - without feeling tired or breathless or feeling tired.
Unless Pilates makes you feel unwell, it is one of the best exercises you can do, core strength is so important.
Rule of thumb:- if you can’t walk and talk, stop and recover and then go slower.
I can no longer do a full hour Pilates class but now it is all on Zoom - I ‘snack’ exercise - about 10 mins at a time x 4 daily. I don’t do as many repeats but I still do the exercises and that works for me.
It’s all about pacing yourself which is a hard one to master but stopping just before you tire/get breathless/HR rises is key.
It may improve, it may not but one thing is sure - if you don’t exercise it will only get worse.
Thanks for encouragement. I have found some seated pilates on YouTube and plan to start off with that a couple of times a day
Just dont think I could manage my fitness pilates too much up and down but chair pilates will help me build up. Xx
I am not in permanent afib, but if I go into it with a resting rate of 140’s I feel horrible and cannot do anything but sit. I take metoprolol and even with a Much higher dose it does NOT touch the rate. The only drug that has worked to reduce the rate is cardizem, which is what they give me IV in ER. Immediately feel better, but does not convert me. Everybody is different, but I walk on eggshells being careful to not stress my heart and go into afib. I do not exercise due to taking flecainide which caused me to go into vtach in 4 minutes on a stress test, SO no exercise for me. I want to especially when I am feeling normal, but as my daughter (a 12 year cardiac nurse) SAYS...
Mom you are not normal😕17 cardioversions in 6 years. Take care and listen to your body, maybe a different drug your Dr could prescribe?
In my experience the arrythmia nurses are just as knowledgeable as cardiologists, more empathetic and easier to get hold of. Always ask them first they are so helpful, at least at Papworth
In permanent AFib for about three years and really never aware of it unless I feel my pulse. Last 20 months though I was on Prolia and then actonel for osteoporosis and both made the afib much more prominent, pulse not higher just could feel heart beating more and most uncomfortable. Back to usual now I’m of them. Take warfarin, lisinopril, diltiazem and forosimide.
Just missing my old life. I was very active
I will plough on though. More rest methinks. X
Hi Nannie - C, I'm interested to see that your osteoporosis drug made your afib more prominent. Was this the reason you had to stop the treatment and did they come up with alternatives for the osteo if so? Mum has AF and takes bisopropol and warfarin but now has osteoporosis. The rheumatologist wants to give her the zoledronate infusion and she's worried how it will impact her AF (given it is a known side effect in healthy people). Did your doctor discuss any of the possible drug interactions with you? Thank you and sorry to hijack.
I was on Prolia first and although I knew afib was in side effects list consultant ensured me he’d never seen it and as I had numerous spinal fractures went ahead, not bad with first and then had second and became much worse. Stopped it due to that and many other side effects. If you stop prolia you have to go onto a relay drug to try and prevent rebound spinal fractures from stopping prolia. I refused zolendronate acid as thought of having side effects and drug being in my body for a year frightened me so took weekly actonel, another of the bisphosphonate family. Sadly felt my afib more prominent so as other symptoms present I stopped it. I know I’m now at risk of more fractures but simply can’t face any more of these drugs. Everyone is different though so hopefully your Mum does well whatever she chooses.
I'm sorry you had such an awful experience with the treatment and don't blame you at all for completely coming off it. Thank you very much for sharing. It's definitely given me and mum something to think about.
Hi
I have had permanent af for nearly 6 years. You won’t have episodes as people have already said. You will tire very easily and it will take time to build up some fitness. I still hill walk, I still do 15 miles plus but I now take an age to recover, well over a week after a days walk, I still do a couple of miles a day while recovering but always end up sleeping afterwards. This means walking holidays are no longer possible unless I do very short walks. Activities that work all the body like gardening have become difficult especially if it means bending over, I find after about an hour in the garden I’ve had enough.
When I’ve over done some activity, I find later I have a sort of episode I can actually feel heart palpitations but they seem very faint. This is followed by a little nausea and tiredness, the next day I feel wiped out, not ill, I just can’t be bothered to do anything. I’ve got used to these side-effects and know the consequences of the activities I do.
You can still do your walks or whatever activity your used to but keep you heart rate down. If you walk up a hill go at your own speed if you start to feel your heart rate rise stop for a minute or two. The doctor told me that working your heart a little excessively will not wear your heart out.
As for measurements I have a blood pressure machine I use if I feel under the weather, I end up using it a couple of times a month. I weigh myself pretty regular but still look at my ankles for signs of problems. I think I will know if I ever need to phone for help without the aid of any machines.
Basically let your body tell you what it likes or doesn’t like. Except your not as fit as you was. Accept your limitations but this does not mean you can’t push yourself, you just have to do it differently.
I can walk up any hill or mountain but in my own time.
Thanks that's helpful. Just keep feeling so useless and miss my exercise. Cant wait to get back swimming. I know I have to accept my situation but find it so hard. Xx
I found this model of change very useful - Stages you move through
Denial
Depression/Anger
Gradual Acceptance
Adapting to new norm
Growth through to thriving
In short you go from just Surviving through to Thriving.
Sounds like you are still around denial/depression and that is very normal in the early stages of coming to terms with illness but there is learning to be gained and there will be growth - life may never be as it was, but that doesn’t mean to say it will be worse!
I understand excessive exercise can cause Afib so think you need to moderate you exercise.
I think ‘excessive’ = Endurance Atheletes.
You still need to take a med for heart rate control and blood thinner..I am in permanent AFib and heart rare is comtrolled at 90 with my med and continue on blood thinner per my cardiologist.
Do take meds and thinners I thought I would be able to do more six month down the road. Xx
What meds and dosage do you take? X
Coumadin and carvediol
Just curious, are you properly hydrating before you exercise and maybe even during your exercise? I know lack of hydration can trigger an episode of AFib in me, at least be a contributing cause.
Hi. I am so aware I keep get told to not drink too much as I retain fluid. However that could well be an issue as I probably err to much on the not drinking enough side.xx
I take 10mg of Nevibolol and that keeps my blood pressure down at 121/77 and my hear rate at 60 but i do have a pacemaker which kicks in at 60 so my rate does not fall anymore
Blood pressure after A Fib episode
Now heartbeat too low
Root Cause of A-Fib. 
Paroxysmal Atrial Fib not converting. 
