How do you lovely people manage to function when you experience an episode of AF?
My nocturnal episodes leave me exhausted and stressed - Last nights episode left me the same, it was 12 hours before normal sinus rhythm returned (longest yet). Seems to be a monthly pattern emerging with my episodes.
Thank you.
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Fight-the-good-fight
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I always say that we all have totally different levels of acceptance of AF events and those tend to change as we learn about our version of AF and realize we won't die---unless we are stupid enough to try and run a marathon in AF of course.
Max heart rates are often quite different as well and that can also make a difference to individuals. Mine seldom went over 200 , maybe up to 220 on odd occasions but due to my reluctance to let the beast control me I always carried on for the most part. Changing a gearbox on a rally car in the middle of Wales, waiting to fly to France to see my sister, looking after racing cars at various circuits including Spa in Belgium and Monza in Italy have all been times I have been in AF . The tasks were far more important than my comfort and nothing bad ever happened. (Apart from the obligatory trips to the loo of course.)
It is important to try and be relaxed about life and stay well hydrated at all times but never let AF rule your life.
(Queue spate of people telling me my AF could never have been as bad as theirs. Really?)
😮 Thanks Bob, I am amazed and in awe you carried on with your normal tasks during an episode, You are indeed inspiring... I just curl up until my episodes subside, I am terrified to move.(I allow AF to rule my life)…
On a positive note, I have signed up to Qwell (NHS) funded.
Mine are awfully symptomatic, too. I understand your reaction. Especially long night episodes leave me feeling like you - absolutely exhausted, frightened, and depressed.But I try to just get on with work and jobs. It distracts me and makes my mood better.
It does nothing for the AF, of course, but that resolves on its own eventually.
My whole day (each and every day) I’m in and out of Afib constantly. My heart rate is aywhere from 39-220 bpm. I’m fortunate to have no limitations and my Afib does not stop me from doing anything. After 3 failed ablations I just take it as it comes. I know I’m very fortunate and if and when things change I will deal with that too. Cheers
With respect your stomach has nothing to do with the process. Frequent urination (every 20 minutes or so) often occurs during the early phase of an episode and is due to the release of atrial natriuretic peptide from the fibrillating atria which tells heart to tell kidneys to dump sodium - result - large amount of urine produced very suddenly and a lot of peeing, which in itself is restricting.
AF distresses the heart which then releases an enzyme which tells the body to shed salt. This it does via the kidneys, hence for most people AF means peeing every ten or twenty minutes
But I'm like you BobD, in that I just get on with it. In fact, my maximum recorded heart rate was at work with a 24hr ECG monitor @ 272BPM! My cardio was amazed that I was still sitting in the chair when I went in for the results 😄
In the early days, it used to bother me heaps; shortness of breath, clamminess, dizziness etc. but over the last 40-odd years (I was 21 when diagnosed), it gradually became something that was just there, part of my every day. I actually don't get the symptoms anymore other than noticing the galloping heartbeat on occasion, not surprising given that I am in permanent AF and unmedicated because each time I tried, it just made things worse!
These days, aged nearly 61, I still work out at the gym 4 days a week, drink alcohol, race my little Fiat, run my business and generally live my life without boundaries. I think stressing out about it too much simply makes it worse... but that's just my two bob's worth!
Three for AF till 2008.No AFbut atrial tachycardia arrived and I had ablation for that in 2019 though HR now average 85 but second degree heart block so pacemaker fitted August 2022.
l agree absolutely with BobD. I found that when l started to relax, accept it and carry on, it became much easier to let it run it’s course and get my mind onto something else. It takes time to get to this point. Now it doesn’t worry me so much. I tell myself it won’t kill me and it’s happened before. Anxiety will prolong it. It was the anxiety that made me worse and exhaust me. As time goes on you will change your attitude and wise-up to this monster. Don’t let it define who you are.
Yes, l know. I suffer from high anxiety and mine went through the roof when l was first diagnosed with AF. To say it scared me does not fully describe the shock horror of it all. You need time to accept and get stabilised before your stress levels will come down. You will have a good quality of life again, you wait and see! Keep strong and positive. Take care.
What other illnesses have you had? AF can make you feel awful but I can assure you that setting your mind, if not your body, on something else is the best way to cope. I asked the question because it concentrates the mind wonderfully to sit down and make a list of illnesses that are much more awful than AF, but of course if you haven’t had much experience of those yourself or in others you can’t get that perspective. It is natural to feel anxious when your ‘engine’ seems to be threatening to break down and it takes time to accept that it won’t. You’ll get there ❤️🩹
I have Crohn’s disease which thankfully, is in remission after major surgery 10 years ago. Hence the reason for my healthy lifestyle.
I believe the culmination of Crohn’s , plus husbands recent leukaemia diagnosis (thankfully he remains in remission) and sudden death of my mum from a stroke and father from cancer has led to my health anxiety…
I have health anxiety but it doesn’t extend to AF fortunately as I can have episodes lasting days, but then I’m sure my AF isn’t as bad as yours and I’ve had it a long time…….
I agree totally with Lenlec and Buffafly, you need an additional medication to take if in Afib. You shouldn’t need to wait it out for 12 hours or more.
It depends how you feel on beta blockers. If they are not stopping the episodes and they make you feel rubbish then if your heart rate is low / normal in NSR I don't see the point in taking them. They tend to make us women put on weight as well which is counter productive for afib.
I’m right with Bob on this one - carry on as best you can and try not to let it master you. I’m a relative newcomer with 3 years of paroxysmal Afib but the most important thing I’ve learned in that time is to stop worrying about it (I know that can be easier said than done) and just ride it out without panic, provided there are no red flag symptoms like breathlessness etc. Things I’ve done whilst in Afib - flown to New York to see my daughter, climbed a (small) mountain in the Lake District, cooked Xmas dinner for 12 etc (there are many !)
I’m not saying not to pursue the illusive ‘cure’ as some people do seem to get to that point, and I had my second ablation last week with that in mind. But it does seem to be much more about understanding your own triggers and your own individual version of Afib as Bob very rightly says. But there’s definitely a lot in the psychology and important to be the boss of your Afib not the other way round !
To me there were two issues. Initially I did not know I had AFIB and my symptoms, upon reflection, were fatigue and indigestion like feelings.When it got bad the symptoms were similar only a quantum worse.
Before medication I found rehydration and lying down encouraged recovery.
Medication (sotalol) worked with all the documented down sides. A PM bumped my pulse up and provided a general improvement.
Before diagnosis I got an AFIB attack just prior to boarding a long haul business class flight from Dallas to Sydney. Missed all the top shelf wines so was not impressed.
Are you still on sotalol? I hate taking it and waiting for an ablation as I get breakthrough episodes lasting up to 30 hours, it's not nice. My EP says he cannot increase my sotalol any more (I am on 40mg x 3 a day) because my BP is too low at around 106/65
No was able to stop it a couple of weeks after the successful PVI ablation.The worst side effect was vivid dreaming which took about six months to return to normal.
Hi Geoffa1, yes I get that, I wondered what caused my vivid, weird dreams which waken me with the jitters, anxiousness, which of course worries me in case it sets off an episode, the very thing we are all trying to avoid! I used to be such a good sleeper now I dread going to bed 🛏️
Hi Fight-the-good-fight. It’s horrible isn’t it? I usually awake and think, ‘here we go again’. Mine usually happen while I’m asleep and wake me up. After coping with them for 7 years, I just prop myself up with pillows into a semi sitting position, and sip copious amounts of water between periods of relaxing and drifting into a catnaps. I usually awake from from one of my naps and find it has settled. When I read some of the stories of people coping for 48 hours plus with an episode, I feel blessed mine are only for a few hours during the night. The only advice I can give is relax and tell yourself ‘this will pass’. Have a lovely day today 🐝
My episodes have all been nocturnal, I do exactly the same as you. Sunday nights episode was 12 hours, the longest yet…It completely wipes me out the next day.
Mm well I’m still very new to AFib diagnosed in jan this year. I’ve only had 3 bad AFib attacks but the last two were so bad I was all but passing out, had zero energy and could barely stand. Needless to say I ended up in hospital with cardio version. I was so new to AFib I didn’t even know enough to be scared or panicky - I got diagnosed with CHD at the same time as AFib and was far more worried about that than AFib.
I would be interested to know BobD and Dyldog if at the start of your AFib attacks you ever feel as bad as that? I consider my self to be a very strong person ( mentally & physically) and honestly couldn’t possibly have stood upright for 2 minutes without collapsing let alone caught a flight.
Last time I was on a sailing boat moored up in a storm and hubby wanted me to help tighten a line - I even got up to try and help in the midst of the attack but literally collapsed in a heap! That’s when I knew something was seriously wrong.
I love the idea that I can mind over matter and get through this without requiring a trip to hospital and a cardio version however I do question that this might not be possible for some of us with greater physical symptoms ?
You did say you expected a queue of people saying their AF was worse than yours …..I’m not saying that. What I am saying is that for me, during those attacks I literally was unable to stand for any period of time without passing out
It’s very true that some people feel awful during AF, faint, dizzy, breathless, chest pain. Other people are asymptomatic and have no clue it’s going on. It’s hardly a choice we can make of our own free will. It’s not as if it’s a personality trait
To answer your original question - how did I cope (I hardly ever have nocturnal Af these days) - Distraction, distraction, distraction. I had Pulsaltile tittinus ie I could hear every heartbeat VERY loudly, preventing me from sleeping - most nights. Acceptance is first stage and working out what you can do to help yourself is second stage.
I was someone who couldn’t stand up with AF - literally - as my already very low BP pooled in my legs and then I would be on the floor, so I spent most of my AF episodes with legs up. I found Audio books - pair of ear pieces, switched on a book and usually lasted about 10 minutes maximum. Now it’s the only way I CAN go to sleep! I ‘read’ a LOT of books!
Nocturnal AF is often either vagal AF so look up what to do/not do with vagal AF or can be HR dropping through sleep or Sleep Apnea. My nocturnal AF stopped completely when sleep Apnea was treated - still had AF during the day though.
You will find a way through, be patient and kind with yourself and be realistic about your expectations of yourself. Coming to terms with living with AF takes time. If you can, go to Patient Day and if not watch the videos and learn as much as you can. Become an expert patient and understand what questions to ask of your doctors. Do everything you can in the way of Lifestyle adaptations to give yourself the best chance and don’t expect much help and support from GP unless they have a special interest in AF. Only you can do this, no-one is going to do it for you and there is no magic treatment.
There are worse things to suffer from than AF is always how I look at it.
I lived with and managed Crohn’s disease for 20 years before I had no option, but to undergo life saving surgery. Thankfully, after reversal surgery and, lifestyle changes I have remained in remission from the disease.
For me leading a healthy lifestyle for the last 20 years, AF was a complete shocker…
Family history of HD, events in life, (now) high blood pressure have possibly compounded my anxieties over the years…
i seemed to misss the paroxysmal part of af and go straight to persistent with heart failure. I’m not a particularly anxious person but my stress levels went through the roof! It took a very patient and kind nurse in urgent care to help. I don’t know what he said but i came out calm and started to work out what i can and can’t do. The raft of medication has helped with the heart function and af controlled with pills but those two months were horrible. I can’t give helpful advice but can totally sympathize.
Before I knew I had AF, I had a number of episodes lasting several hours. I felt rotten and just sat it out, unlike Bob certainly didn't feel able to do much else. Looking back, I am amazed how ignorant I was and didn't even think of consulting a doctor....just a funny turn!! Don't worry this and any pulsatile tinnitus that develops (quite common with AF/some drugs) turns out to be helpful in the long term as you know right away if you are in AF....some people don't!
At your stage I would step up on the full spectrum of improved Lifestyle choices frequently discussed on this Forum and then book a private appointment with a cardiologist to discuss whats likely to be coming down the track and his/her recommendations.
Take positive action, in what ever form suits you, on anxiety as this is a key issue, which if left unchecked, can increase AF episodes as well as just making you feel grim. I have found the best unadulterated unprocessed simple food is helpful, also a new hobby you always wanted to try but never had an excuse to indulge yourself and lastly don't forget the spiritual side - in my case that is prayer and interacting with Nature, which helps to take you out, albeit temporarily, of the 'washing machine' churning your worries.
I have experienced AF symptoms for years, but it was always diagnosed as ‘Anxiety Disorder’ by my GP because bloods, ECG, etc came back normal.🤷♀️.
However, in June this year my so-called anxiety disorder would not abate. I took it upon myself to contact A&E where they diagnosed AF.
I do lead a healthy lifestyle because I have Crohn’s disease-which thankfully I am in remission after undergoing major surgery some years ago.
My problem is anxiety, which has increased my BP (now on meds).
We walk every day on the beach with our dog, I enjoy gardening and mindful colouring books
If I can get my anxiety under control I may be able to move on and control my fears. I have signed up to a counselling service funded by our National health service. Hopefully, that will have some impact.
I began to have panic attacks as well as AF attacks and had to do something. I began to use a mindfulness site which helped me to calm down and fight the anxiety. I asks pressed for an ablation which hasn't cured my AF but has reduced the awful symptoms.
Although it returned after the ablation, I have been able to stay in sinus with the help of dilitiazem and flecainide. I still have this last as a PIP but haven't needed to use it for a while. I also lost weight and stopped caffeine and alcohol after advice from this forum.
You will find you will be able to live with this eventually but there is some great advice here- keep your mind busy. We have all been there. Good luck x
The main issue, I believe, for many sufferers, is the difficulty of separating the physical from the psychological effects of AF. A cardiologist I saw assured me that I would not die of AF even if it made me feel as if I might - that thought is something I try to hang on to!
Feel for you. I have the same condition. It's frightening and steals your life, especially when you are out of breath and unable to do the normal chores that are required every day.I am awaiting 3rd Ablation, but I was given, (pill in pocket) Verapamil 40mg by my Dr. After 1hr, heart had calmed from 145 to 60. Have only used it 3 days ago. It saved the Day. Hoping it will work next time. All the best.
Mines come any go daily. Used to be less. But anxiety plays a major part in symptoms I find. Since diagnosed the symptoms were very bad. Now they are easier to manage as I have sort of got a hold of my anxiety which has taken almost a year. No meds seem to work for me. Currently on list for ablation. Lost quite a few days off work due to anxiety and AF at first. Now just try to carry on. Although driving licence has been revoked at moment due to bad conversions back to nsr. Longest episode has been 36 hours while on dronedarone.
When an AF episode woke me in the night, (once I had been prescribed them by an EP I saw privately after being totally failed by my surgery) I took 100mg of Flecainide and the episode usually ended in a few hours which I could track with my Kardia ( with an added 1.25mg of Busoprolol if my heart rate exceeded 140 twenty minutes after taking the Flecainide, which rarely occurred). Now I take the Flecainide twice daily, I hardly have episodes but when I did it was important to rest and take it very easy. Of course, we are all different and do hope you find what works for you.
My reply is very similar to many. As time has gone on and Ive learned more and more about my AF my attitude towards it has changed. Still f()<ing hate it with a vengeance but have learned to believe that it won't kill me, that having a stroke is possible but not likely. Ive turned that anger into a positive energy of just being determined to get on with life and I have to say on the last few months my AF burden has been lower! The perfect circle...care less and having less episodes.
Don't perhaps do as I say but Ive been kind of living my life more like I used to. A bit more drinking (2 or 3 pints at a music festival is now a big night for me) and enjoying myself.
Im sure the AF git will resurface soon but I will get through it and it will go back into Sinus and now I believe that I won't be hurt, life is definitely better.
My tips would
Magnesium
Good water intake/ hydration
Sleep
Reduce stress in your life. Make changes to achieve this. FYI, Im a life coach so have worked incredibly hard on creating the life I want which Im sure has helped greatly too.
Careless - The way I care less is lots of reading and education and for me an Apple Watch is great.
Hi, Fight--BTW, I also have IBD (ulcerative colitis) for a million years, and those steroids at times have been the cause of many AF episodes! As you'll hear, AF presents differently in every one of us. I agee with those who are saying anxiety is the worst side-effect: control that through lifestyle changes & steps you are taking, and it will not be the scary monster that it seems now. I carry on at work, drink lots of herbal tea, and tell my heart, "you can relax--nothing bad is going to happen", and I take a 150 mg dose of flecainide. It stops within 2-4 hours. Check on flec w/ your dr. But I have also flown in AF, and have performed concerts while in AF & I discovered it doesn't get worse. You just get used to it.
If I'm at home, I will take flec, sit down w/ a book, keep hydrating w/ herbal tea or water, & read til it stops. But I am lucky not to have shortness of breath or dizziness, as I know some do. If you do not sing or play a musical instrument, this would be a good time to learn--I have stopped many episodes by playing the piano or harp, and esp. by singing for 30-40 minutes, by regulating the breathing--but also simply by getting absorbed in something beautiful and calming. Also take magnesium & potassium (check your levels first w/ blood test). As many here have said--basically, "Keep Calm and Carry On". This, too, shall pass! Peace and all good wishes, Diane S.
I used to be terrified when I had an episode -- they almost always came at night. I would sit up in my livingroom rocking chair for hours, constantly checking my pulse. I later learned that I can actually do things while in a-fib, so I would begin tidying up the house at 3 a.m., or get on the internet. When episodes lasted well into the next day, I tried light gardening and that seemed to throw me back into NSR. It's then that I realized that doing something to take my mind off it seemed to lessen symptoms and in fact turned things around. Most of mine fell in that category, but I've had more severe ones too where I was immobilized from fear and went to the ER.
I have paroxysmal Afib and have been offered ablation. I wonder why so many of you, who clearly suffer bad Afib , carry on without having, or even considering, ablation. I’m not sure whether to take up the offer. Any advice welcome!
Hi krakow, In answer to your question, I think almost all of us have discussed ablation with our EP's/cardiologists; I read that they seem to be pushing it rather hard these days. The problems you'll read about on here, though, are that ablation works for certain cases & not for others; it very often requires 2, 3, or more ablations later, and ablation has serious risks of its own. Not everyone is a candidate, even those with a lot of bad AF episodes. And a lot of us have found various drugs like flecainide, bisoprolol or metoprolol, etc. are working well enough that life goes on pretty well as normal. I work full-time; flec works well for my paroxysmal AF, and both of my cardiologists agree that ablation would not be the best option for me.
Though it works well for some, it's not a cure-all for most people, who still have to take anticoagulants and possibly other drugs; and many of us would rather carry on with meds, alternative practices, and lifestyle changes (all of which have improved me tremendously)... until maybe someday we'd get to the point where the risks of ablation seem more bearable than meds & symptoms. Many people, like me, have bleeding or auto-immune issues, other health problems, genetic and other conditions that weigh against ablation. And some of us are waiting for mini-maze, convergent, and other interesting advances to become more affordable or more available, before jumping into the pool. The decision is so unique to each one of us. Hope this helps! Diane S.
Thanks, Buffafly! That means a lot, coming from you, an excellent source on this site. Yes, I see the question asked so many times that I thought I'd jump in. Cheers and best to you, Diane S.
Hi Krakow, I am having the same dilemma. I am on the waiting list for an ablation but still incredibly worried. My EP says I have an 80% chance of knocking it on its head whilst I am still in the paroxysmal stage so that's good stats, I am just anxious over the risks
Hello, my first Ablation lasted 3yrs of utter bliss☺️❤️. It did come back and I had it done again. I've had good and bad days and now waiting for my 3rd.its well worth having done. Better to give it a go, if your lucky enough to have the opportunity. I'm feeling optimistic, but if all else fails I'm to have pace & Ablate nodes so will be totally dependent on Pacemaker. But at least the amazing team at Liverpool Heart and chest Hospital will have tried everything for me. I'm very grateful for their care. All the best
Hi alfrae13. I discussed PIP with my consultant, but they were reluctant and told me BB taken on a regular basis were more effective.🤷♀️ It is a question I will ask again, as I despise the side effects from BB.
They don’t subscribe to PIP. Reason being, taking BB long term produces better results (in their opinion)
That said, I will be speaking to my cardiologist on October. My preference would be PIP over long term use-especially as I now take medication specifically for high BP.
Initially BB was prescribed to lessen effects of AF, and reduce BP.
Abstract. Beta-blockers are effective antiarryhthmic agents for certain types of supraventricular and ventricular arrhythmias. They are able to prevent arrhythmias associated with sympathetic hyperactivity, suppress automaticity, and slow conduction in myocardial tissue with predominant slow-response activity.
BBS have a weak antiarrhythmic effect but are not classed as antiarrhythmics. They wouldn’t put you back in NSR as a PIP or regular antiarrhythmic would.
Hi there, my episodes drain me and often go on for 30 hours plus, it's scary but I do what my EP says and sit it out unless I get chest pains, breathless or fainting. It's not nice. I've tried everything including cold showers but nothing works for me. I think it has its own internal clock ⏰
I am surprised nobody responding to your post has suggested a Valsalva manoeuvre at the onset of an AF episode to stop the episode. Your description indicates Vagal AF.
So you are saying you have tried a Valsalva maneuver to no avail? I did not have someone tell me I had Vagal AF, I discovered it through experimenting and research.
I would suggest that only a small proportion of cardiologists are interested in types of AF, they only recognize stages of AF
I used to take 100mg of Flecanaide as a PIP when this happened and then if the heart rate was over 140 twenty minutes later which it rarely was, 1.25mg of Bisoprolol. Episodes rarely lasted more than a few hours and now that I take Flecainide daily I hardly ever have episodes. Do rest when an episode occurs and try gentle breathing or meditation or anything that helps you relax rather than stress which isn’t at all helpful. Good luck finding what works for you.
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