So I wonder if I will ever get used to having AF episodes? Every time it happens I feel so anxious and feel so upset. I know it’s something I will have to live with and so far my cardiologist has only given me beta blockers due to low risks for other factors. I just wish there was a magic pill that would make it stop and me to have nsr. He has decided an extra beta blocker is enough for now and I do recognise I will need other things to try as the episodes increase which they inevitably will. I want to try and stay positive and carry on living my life. Today is the first time I’m going into work whilst in AF so wish me luck!
Do we ever get used to this? - Atrial Fibrillati...
Do we ever get used to this?
52 Replies
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Hi and welcome.
Commiserations and most of us will have felt exactly as you now write at the start of our AF journey. Know that I have had AF for more than 16 years, many members here for a lot longer so we have learned that it is a long term condition which you basically have to learn to live with, although we all wish we didn’t need to!
Sorry no magic pill but there are treatments and coping strategies and one of the most affective is breathing techniques - taking Long Slow Deep breaths - LSD but the natural kind.
Do we ever get used to this - yes - but depends on a number of factors of how long it will take. I did but it took a while and I am not an anxious person, anxiety will make your AF worse but I did notice that I suffered physiological symptoms of anxiety, breathlessness, adrenaline rush etc. they were messages my body was sending to say there is something wrong, nothing more. I was lucky in that I worked with anxiety so knew that they were just sensations and I could be observant of them, without worrying about them. It’s the worrying which is often far more disabling and something you need to get help with controlling. Practising daily Mindfulness is excellent for teaching you how to do this.
It depends upon how often your episodes are? How symptomatic you are with them? What sort of support you have both medically and environmentally for instance is your employer aware and supportive? When you have an episode is there somewhere you can go to sit/lie quietly?
Medically Beta Blockers are normally first line meds prescribed and work for some whilst others have problems with taking them, everyone reacts individually.
Knowledge is potential power, knowing and understanding the various treatment options, knowing the questions to ask your doctors, knowing what exactly AF is and how it affects people very differently - some people are not aware they have AF and they are probably the people most at risk.
Here is a great starting point heartrhythmalliance.org/afa...
I am assuming that your doctor will have assessed you for stroke risk, you made no mention of anticoagulants? Once you realise that AF may demand that you to make adjustments to your life, that not all those adjustments are bad and you that AF is not life threatening but can be life changing and accept it is part of your life now and you will need to deal with it, you start to feel more in control. The worst feeling is that of AF controlling you and please try to avoid that if at all possible.
We had a saying back in the day - I have AF but AF doesn’t have me. Continue to live your life but look at all the Lifestyle measures you may need to take in order to keep well and hopefully AF free.
Best wishes
in reply to CDreamer
Thank you for your comprehensive reply it’s very informative!! I have been working on mindfulness and will try the breathing! I don’t currently need an anticoagulant as my Chad score was 1. I will try and change my lifestyle and see if that helps x
CDreamer in reply to
Most people consider diet and exercise to be Lifestyle measures but that's less than half of the story - in order of importance to AF:-
Hydration - water only!
Stress Management
Sleep
Breathing
get those right and the diet and exercise come much easier as we often eat to compensate for the deficit in those 4.
Do ask any questions as this is a really supportive and knowledgable forum and there is no such thing as a silly question, we all recognise that we were not experts to begin with - I have a another saying - we are none of good at anything at the start, but you need to start in order to become good. Managing AF is no different.
PS - with effective lifestyle changes - AF episodes may not increase.
Pingu. I was told 7 years ago that my episodes would worsen with time. I average 1 every 8 months and here I am 7 years later and I'm still the same. Take it is as it now , dont look ahead, you will get used to it believe me.
Lifestyle changes and 200mgs Flecainide (a medium dose) has stopped my vagally mediated AF completely, aside from 2 half hour episodes over 8 years caused by triggers - stress & a cold fizzy non-alcoholic drink. I was diagnosed at 60 with Lone PAF. nb it is a long road and you need to be persistent, I am still working on it now.
I don't think it is realistic to 'learn to live' with AF if you still have options to explore as the more episodes you have usually the more you will get according to various medics' opinions I have seen reported here.
Best wishes.
Probably my wording should have read ‘learn to manage” and I agree many options to explore.
in reply to secondtry
Thanks for the reply
Slidingdoors99 in reply to
It’s horrible, really horrible I know.
I’m really not an Olympian! but I’ve always considered myself fairly fit and healthy - gym and swimming weekly, weight fine etc Then, wham straight in there completely out of the blue, really symptomatic (too breathless to walk more than 8 steps without stopping) and quite scared too.(I was 64 and there is a history of heart problem in my family).
I’m one of those people with a stubborn heart as well!
I don’t really know about episodes as such, but there are so many kind and knowledgeable people here who do!
Once in this crazy, gapping and flapping and noticing each beat feeling I stay like that until I have a cardioversion!
Really, I just wanted to say that I don’t think there is a ‘reason’ why everyone begins this unlucky journey and that there are things that can be done to help along the way.
I’m thinking about the possibility of having a ‘pill in the pocket’ and maybe an ablation in time?
When I first found this site, one kind and I think funny person wrote: ‘Welcome to club nobody wanted to join!’
Take heart Pingu, you’re definitely not alone!
in reply to Slidingdoors99
Thanks for the reply and it’s certainly not picky is it!
Slidingdoors99 in reply to
😂😂
Pingu, hang in there ! For me and many others, the AF episodes are also demoralising and upsetting, but you do develop an MO for coping with time.
How frequent are your episodes, how long do they last, how fast the HR, and how symptomatic are they?
There are many triggers that can bring on an attack, after a few hours or even the next day, that are mentioned on this forum.
I found that an antiarrhythmic medication (Flecainide 100mg) in combination with 1.25mg Bisoprolol (B-blocker) keep me in NSR. I only take the pills two hours before exercising or when the heart feels "different". Caveat, your health professional must advise you on the best medication in your particular situation.
All the best, Saul
in reply to saulger
I’ve had 5 episodes since September with no real pattern yet. They last between 10-18 hours. My heart rate is usually now under 100 once the extra bisoprolol kicks in. My biggest symptom is I struggle to sleep when it happens which then makes me tired. I suppose my anxiety also makes it worse and is a symptom I need to learn to manage better. So far they are manageable and my last 2 episodes I carried on and went to work and both times I returned to NSR whilst at work. My cardio talked about an anti arrhythmic being a possibility as a pip in further but wanted me to stay with an extra bisoprolol for now.
Slidingdoors99 in reply to
Ah ha!! You already know about pops! 👍
Slidingdoors99 in reply to
Pops?! Pips!
saulger in reply to
Hi Pingu. 10-18 hours is a long time to tolerate an episode. As you may know the upper chambers are fluttering at 300 BPM or more during an episode, which leads to weakening and enlargement of the atria.
I would, in your case, look at Flecainide or similar. 100mg Flecainide (PIP) with 1,25mg Bisoprolol settles the heart for me in under an hour.
Best to avoid episodes, so it does not become persistent.
Go on Youtube and Google AFIB forums to learn about the triggers and to identify where you may be able to stave them off.
Have you had your Vitamin D3 (25-OH test) checked?
I am four years since diagnosis and would have weekly episodes without the PIP as a prophylaxis.
in reply to saulger
I think because my heart rarely goes above 100BPM for longer than a few minutes when I’m ah fun an episode they are not as worried. I’ve asked about other meds but at them won’t they don’t want to give me them
saulger in reply to
Pingu, during AFib even when the HR is 100, the atria are quivering at 300-600 beats per minute, which causes eventual enlargement and weakening:
"Atrial fibrillation is an irregular heart rhythm that occurs when the top part of the heart (the atria) are beating at up to 300-600 beats per minute."
As others have said here - we all feel the same at first. We have to be brave and face this new reality and not allow it to rule our lives, easier said than done but still true. I used to panic which made things much worse, but now I'm (still) trying to live with it. Good luck and best wishes.
in reply to bassets
Thank you, I do wonder if my panic does make the whip thing worse and am working on that.
It is a tough journey at the beginning I know. But it DOES get better because whilst you still have the AF you learn to manage it and live with it. BobD always says it doesn't control our lives but is part of them. And I think he's spot on. I'm almost 2.5 years into my AF journey and it felt like the end of the line for me for many months - the constant worry at the back of my mind, and the fear when episodes hit. It also happened just before the pandemic, which didn't help. When I had my first ablation my mindset shifted. I had an awful time as it happens- episodes on and off for a couple of weeks, often lasting hours. I remember crying to the arrhythmia nurse and saying ' but I only had it 8 times a year!'After I put the phone down I really had to think about that word ONLY. From then on I started to think about the spaces between episodes - working on my lifestyle to feel as good as I could in those times - and to enjoy them. Life began to get better and somehow I was happier. Much happier actually. I've just had my 2nd ablation and it's gone a lot better, which is good. But I know AF might always be with me to some degree and therefore is part of my life.
On the practical side, look into lifestyle changes and alternative meds to BBs if you feel those are making you feel low. It's early days yet and there are lots of options. Plus, the idea that it will 'get worse' - I was told the same - is just medical statistics. With good management from yours and the medical side, that really doesn't have to be the case.
in reply to Singwell
Thank you
I am sure that you will get used to your AF and the anxiety it causes you, at least sufficiently to get on with life more comfortably. Time will do the trick as a day will come when your mind will tell you that you have had this so many times before and survived in tact that you just know that will be the case this time.
You can speed along the reassurance that time brings in its wake, but it might cost you as the NHS is not that keen to help with anxiety, sadly, and it, too, is, like you, "over-stressed" these days! 
The reassurance you need will come from a specialist and an investigation. For AF, an echocardiogram or a cardiac stress MRI is what you need as it will give a cardiologist what he or she needs to be able to reassure you fully that your heart is, except for its occasionally fluttering top muscle, in good shape. They will also show you why you won't die from AF even if the condition makes you feel as if you will on occasion!
Paid for privately, I expect you need a budget of up to £1000 for the consultation and test. For an anxious mind, it can be worth it!
Steve
in reply to Ppiman
I saw a cardiologist for the first time last week and he has booked me an echo as I requested it as I want to see if my heart is ok other than the AF. He was reassuring and agve me a few lifestyle changes to try. I have been thinking about going privately so will look into that. I have to say I’ve been lucky so far and have sessions for anxiety on the NHS so I’m hoping they will help. Thanks for the reply
Ppiman in reply to
I hope the sessions give you some coping tools. There's an excellent book by a famous Australian nurse, Claire Weeks, that would also help you, "Self Help for the Nerves" I think it's called. It's a little old now but nothing has been written since that is more respected or more effective.
Steve
Don't think I'll ever get used to the anxiety, I have a real phobia about hospitals and being taken off in an ambulance with the blue lights flashing has been all my nightmares come true, especially as you have to go alone because of stupid covid. I wake every morning terrified if today will be the day to be in hospital again. Af has destroyed my confidence, I'm too scared to go anywhere on my own.
in reply to Lupaal
Oh no I’m sorry you feel like this. Having a phobia about hospitals and a medical condition that can require hospitalisation must be hard for you. I hope you can find some peace soon x
I'm now in my 27th year of AF. For the last 6+ it's been permanent but asymptomatic. If I had a magic pill, health-wise, I'd use it to restore the peroneal nerve in my right leg and foot so I could walk normally without the use of an orthotic and stick. My permanent asymptomatic AF pales into insignificance compared with my right foot drop.
in reply to Thomas45
I’m glad you’re asymptomatic and am sorry that you are suffering so much with your leg.
Hello Thomas. I'll sign up to 27+ years of AF, as I'm already 75 and could do with the reassurance...
I'm actually writing to ask you about your right foot symptoms owing to the nerve damage.
I suddenly noticed that I am not able to tip-toe on the right foot and my right leg exterior muscle gets very tired on walks. Could the peroneal nerve damage that you mentioned be related to the AFib?
Many thanks and be well. Saul
Hi saulger. Not in my case. One of my cats had been sick on the stairs. I didn't notice it and slipped on it, falling down 7 treads on my bottom. My leg left rode above the treads, my right was bent and hit every tread. When I stopped falling my right leg was painful so I called for an ambulance. I had to get to unlock the front door and amazingly found I could still walk. X-rays showed I had fractured my fibula, which is not a weight bearing bone. Close to the fracture the peroneal nerve passes by, and it has been damaged or destroyed. Nerve conduction studies can't find it. An orthopedic consultant said my leg is inoperable. It hasn't affected my ability to stand on tip toe, although I rarely need to as I am over 6' 6". It's not painful, normally, but annoying as I can't drive anymore. I can't carry much as I overbalance. I have to order my food and the cats' food online. I love gardening, but find it very difficult because of balance problems. During the time between getting in and out of bed without the orthotic I can and have overbalanced several times. Everything takes so much longer, but fortunately don't worry about my AF. The fall happened a few days after my 75th birthday so be careful and always hold onto the banister. I'm hopefully 77 this year.
You can learn to live comfortably with it. My own episodes have increased a lot in frequency since the beginning of 2020 ( I' m blaming it on the pandemic😡)but they are far less symptomatic than they were at first. I take a magnesium supplement and though this has not prevented the episodes I think it really reduces the anxiety about them. When the afib strikes I take an extra dose of Nebivolol , eat a banana and take some more magnesium. Then carry on as normal. Usually it comes in the evening so I read my book /tablet and often manage to sleep - though not that well. I usually revert after about 12 hours. I usually feel wiped out the next day so I rest. The anxiety just makes the episodes worse so tell yourself that this has happened before and you got through it and you will again. You could see about getting an ablation but with the state of the NHS at the moment pursuing that might be more anxiety inducing!
in reply to Auriculaire
They have told me that I would need to lose weight in order to have an ablation if needed in the future so that’s something to work at and will help my overall health anyway. I was taking magnesium but have ran out so may try it again
I had occasional bouts of AF for over 35 years, that sounded very similar to what you are experiencing. At first I was scared stiff, thinking it might kill me. Gradually, I became accustomed to it, eventually regarding it as no more than a nuisance that stopped me doing things for a few hours until I returned to normal rhythm. Medical assessment and advice for the condition was nothing like as good as it is these days - all I was told was to take a junior aspirin, now replaced by a modern anticoagulant. Along the way, I learned what are the triggers for me: chiefly stress, tiredness and alcohol.
So, yes, I certainly did get used to it, and came to regard paroxysmal AF as unpleasant and unwelcome, but not at all scary.
I have given up alcohol, not that I was much of a drinker, always have decaff drinks, no fizzy drinks, have never smoked and try not to get too full as that seems to trigger my heart rate. It's definitely trial and error discovering triggers.
It's something you don't actually get used to, but learn to live with. I'm very symptomatic when I have an episode, but still went into work when in the midst of one. Driving in rush hour traffic is not fun while in a-fib! I found that delving into my work took my mind off it and I'd find myself back in NSR.
in reply to Snowgirl65
Good advice thanks
Oh Pingu; I feel your pain and feel exactly as you do.Thank you for your post and I am looking forward to reading the wise words of the forum folk who are veterans of a-fib.
As one fairly new to this diagnosis ( under one year) I am with you!
in reply to Figbar
It is great to have people with lots of experience to give us advice
Yes indeed.
Hi Pingu7813,
Welcome 🤗 but sorry you are here too!
It’s something that I am struggling to cope with and like others have said, time helps.
You say that you’re waiting for an echo….have you got an appointment soon for that? Who diagnosed you - did you go to A&E? Have you had an ultrasound scan? Once they see your heart too they may then be able to prescribe you an anti arrhythmic like fleconaide, even as a PIP perhaps. Have you had a monitor attached to you yet? Is that what you have requested? They also usually do that initially to see how your heart beats. You might want to ask for a 24 hr one, or they may connect it for longer. It will all help your case. When I was diagnosed, they also assigned me arrhythmia nurses at my local hospital - have they done that for you? You usually get provided with a number to call and they can give advice if you are ever worried? You say your HR is usually under 100 once the extra Bisop kicks in, is that after you have an episode of Afib that it goes to under 100? so do you take daily bisop? Do you have something that helps understand your HR like a watch? An applewatch or fitbit can help, but it can also become an obsession ( as I know too well) it was my watch that told me I had Afib. I also have a Kardia, which a lot of us have too.
I also am under the NHS for sessions on anxiety, it does help doesn’t it ?
For me, I am 56, (with a CHADS of 0) I was diagnosed as paroxysmal AF last September, after having ten years of ‘episodes’ - I used to initially get them once every couple of years, then due to a bout of anxiety last year, I was getting them every three weeks in the Summer before my diagnosis. I now take nearly 1.25 daily bisop due to, too low HR (have been tapering) I haven’t had an episode since last November, as the daily bisop seems to be doing something, but the fear of an attack has never left me yet unfortunately.
Also…it can help to know triggers, but many of us don’t know, or there are too many. If you know, you can try and cut down your episodes. Mine used to always be on a Saturday night after a large evening meal and one or two glasses of prosecco! Food and digestion is quite a common trigger, as is alcohol. Also sleeping on left side….but you probably know all that. Some of us have Afib that’s affected by the vagal nerve ( I do) and If we are affected by food, alcohol and rest/sleep, it is likely it’s vagal. Do get some more magnesium! I find it helps enormously and I’m sure is helping keep off the episodes. I take magnesium taurate and magnesium glycenate….avoid magnesium oxide. It is the cheapest, but doesn’t do much and it can upset the tummy.
Teresa
in reply to Teresa156
Hi no appointment for the echo yet but it should be coming through soon if not I’ll chase it up. I was diagnosed by my GP from and ECG. The other couple of times I was at hospital the ECGs were good but luckily we did catch it on one episode. My heart rate is below 100 unless I’m exercising and when I have AF it’s very rare so far for it to stay above 100 for more than a couple of seconds. I take bisop daily and can take an extra one when have an episode. I have an apple watch.
The treatment for anxiety has helped a bit so I’m hoping it will continue to work for me.
I am 43 and my CHAD score is 1 because I’m female! I’m working on my triggers but haven’t found one yet!! Other than anxiety.
I had a cardiologist appointment last week after waiting 6 months and he has handed my treatment over to my GP unless it becomes worse and I need to go above to him. He didn’t mention a monitor or anything and just said the Echo will help them see if my heart is structurally ok or not. No arrhythmia nurse or number to call either!!
Maybe I’ll email him and ask about that!
I’ve got some magnesium on the way
Hi Pingu7813,
Wow….thanks for answering all the questions 😊
Well you seem to be on the right track, but it’s a shame they kept you waiting so long to see a cardiologist. I think I got on the cardiology ‘list’ because I went to A&E when I had an attack, I think I’d probably still be in the same boat if I hadn’t gone.
It’s good your Afib doesn’t go too much over 100.
In my experience ( and probably a few others) GPs aren’t that experienced in Afib, mine certainly isn’t, but it’s good that you have seen a cardiologist already, even though you had to wait so long. My CHADS score is 0, set by my cardiologist and I’m a woman, but I notice that my GP has my CHADS score of 1 on my medical record. I think we get the ‘1’ when we are 65 and a woman, or it goes to 2 when we are over 65 and a woman ( not sure, don’t quote me 😃) it seems a bit complicated , but I asked the cardio twice about it and my cardio even put it on a letter….so you may find you are actually a ‘0’.
Once your cardio sees the structure of your heart, I’m sure they will be able to recommend further solutions for you, if needed.
I note that you said they’ve handed it over to your GP to handle now, unless it gets worse, which sounds encouraging as like you say, they are not too worried. In the meantime, like others have said, lifestyle changes and looking for triggers may help and you may even be able to conquer it completely, whilst it’s like this, you never know.
Good luck 😊
Teresa
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