Something of a big question this, but one I’m grappling with in my life right now. Apart from a month or two early on of feeling an occasional erratic heartbeat, my experience of Afib has been almost entirely persistent. So I have not experienced the episodes of sudden arrhythmias that paroxysmal Afib brings, where even a small trigger can send the heart racing erratically out of control, one minute in NSR, the next in Afib. So I think being in NSR for 8 weeks since my ablation plus topup CV has given me a better understanding of what paroxysmal Afib must be like. Not because I’ve experienced paroxysmal, but because although I’m enjoying every moment of normal heart rhythm I’m aware of living on an edge, not knowing how long it will last! Paroxysmal must be like that all the time. It’s easy enough to say make the most of it and get on with life, but I don’t think it’s that easy. I’d love to know what if anything has helped people cope with that level of uncertainty, knowing your life can be disrupted all over again by symptoms that change your world around. It seems to be making me awfully cautious about getting back to normal life. Maybe the longer I’m in NSR the easier it will be, but would love to hear of strategies for dealing with the uncertainty! Thank you
Coping with NSR in the shadow of Afib... - Atrial Fibrillati...
Coping with NSR in the shadow of Afib - tips please!
Living with uncertainties - some people are much more able naturally than others is one observation and having studied this for part of my training - we (a team of colleagues) decided that there is a direct relationship with how secure you feel generally.
So how does that relate to AF? My thoughts are - it depends upon how secure you feel about coping with an AF episode anytime, anywhere and to some extent having a plan to cope with it.
Staying relaxed about is also an essential so self talk - even though I am in AF I am OK and it will pass in time - that sort of thing.
Distraction helps and don’t brood on the ‘what if’s’. Put some certainty there - when I go into AF I will - stay well hydrated, eat a salty snack (carry both if you can) and find somewhere to rest until my HR is controlled, then I will pace myself until I get home and then I will rest. Failure to plan is planning to fail sort of mindset.
As I’ve said before - I’ve had AF in cars, boats, trains and planes. Whilst skiing, walking and at the theatre, whilst shopping in town and driving somewhere. The most ironic place was yesterday whilst sitting waiting in the Cardiac Day Centre helping my husband who was having PM box replacement - I realised I was in fast AF so took an ECG on my iPhone. One of the lab technicians wanted to know all about how it worked and how accurate it was and then we talked about the difference with the Kardia by which time my HR had come down from 165 to about 130 at which level can function. The only comment was ‘well you are in the right place if you need us’, thankfully I didn’t and drove myself home.
I should also put a proviso in that my pacemaker has eliminated many of the debilitating symptoms I used to suffer as a result of PAF so I was safe but glad when I was home.
Without meaning to denigrate those who still suffer debilitating symptoms, IF you can cope you don’t need to make a drama out of AF - but you are right - it is the uncertainty you need to live with because that could become much more disabling than the AF - if you allow it to. You’ve lived with persistent AF for a long time - now enjoy the benefits of NSR without overthinking it and the edge will gradually fade away.
Hope some of that helps.
CDreamer thank you, this is spot on and a real help. General feelings of insecurity are something I have always had to work on. As a child the arrhythmia of a hole in heart was my normal and all I knew so it was only AFTER I’d been put right by the heart surgeon at age 15 that I started to suffer serious worries about my health and eventually sought help through counselling. I really hadn’t made this connection til now.
Being prepared and having a plan is great advice. Since being diagnosed with AF I have tried to block out the frequently quoted “no cure” for Afib, but the more I learn the harder it is to pretend. Ok, so instead of simply resting on the hope that I could be one of the lucky ones I can also think more practically about what I’ll do if I’m not - those emergency plans etc. Doesn’t mean I can’t hope too.
Your account of the recent trip with your husband to the clinic made me smile! Clearly a sense of humour must have seen you through so much. And a huge resource of inner strength. Thanks again 😊
I can't add a great deal to CD's spot on reply other than to concur 100% with the importance of having a plan. I've been suffering from PAF for a couple of years and it's been, and continues to be, a challenging journey. My episodes are quite symptomatic and often occur at inopportune times. I take Flecainide & Propranolol as PiPs and I find that if I keep them with me at all times I'm more able to just accept that it may or may not happen and put it out of my mind.
I can very much relate to the health anxiety you mention. I've had a very chequered past with health related issues and get anxious every time I have dealings with the medical profession and the loss of control I feel as soon as I walk in that door. I recently discovered a book called 'The Tools' which teaches a few practices to help deal with underlying psychological problems. One of them is aimed at fear and gaining courage and I found it very helpful! I'm a basket case when it comes to going to the dentist and practising that tool only a few times really turned around my terror and I quite impressed myself when I had my appointment for a filling! I think even the dentist was surprised at how calm and co-operative I was compared to the previous appointment.
I'm so pleased for you that you're now experiencing the joys of normal heart rhythm after so long, and I hope you can find ways that work for to fully enjoy it! 🙂
Thank you so much TopBiscuit it’s so helpful to hear all these many ways of coping. What an extraordinary brave and thoughtful group this is.
Ah yes, The Tools!! I discovered this through an interview on Netflix with the great Phil Stutz. I’ve got a couple of their books and was practicing from them regularly until other things took over a year or two ago. I went to an online workshop on the shadow too. I think Stutz is very straightforward and also a man of great compassion - did you know he has Parkinsons Disease?
Thank you for a very timely reminder!
Oh wow, no I didn't know that. I only came across this book a couple of months ago. An online workshop sounds really interesting, I must check out the website!
Funnily enough I was having a long soak in the bath just yesterday and read the last (or near last) chapter where he talks about how amazed they are that people stop using the tools and therefore introduced the Jeopardy tool. I fully intend to try and incorporate that into my daily life because I used the 'courage' tool (I don't remember what it's called) several times, had a great result.......and haven't used it since. 😀
The film is just called "Stutz" and is still on Netflix - one of his clients, Jonah Hill, is interviewing him. Would it have been Reversal of Desire or Inner Authority you were using? Can't wait to get back to this!
That's right, the 'courage' one is Reversal of Desire isn't it. And thank you, I'll check that out! ❤️
Yes you are right the uncertainty is a challenge which creates in my case a higher platform of anxiety.
Personally I keep on top of it with a number of tools: study AF as an academic exercise ie detach it from a personal experience, be determined to turn the uncertainty into a positive experience by living each day more fully and with more gratitude, prayer and engaging more fully with Nature and lastly taking up a new hobby or challenging but not stressful extra work.
Wouldn't it be wonderful if the Drs didn't scare you so much. My Dr was saying I would have heart failure if I didn't get treatment and would have blood clots if a fib continued. Not a lot of explanation either. This forum is the best for easing anxiety. I have been in NSR for a few months but get still very jumpy when I have a flutter thinking it may become a fib.
Thank you secondtry, I think the tools you’ve come up with are quite close to those I’m putting into practice. Engaging with nature is a favourite, gratitude and a new creative direction, but study of AF has been a real challenge because I had to face a big aversion in myself to even the mention of arrhythmia yet alone diagrams of the heart etc.! I overcame this with my own version of systematic desensitisation - practicing deep relaxation then allowing myself just one or two small “facts” until I could detach it from personal experience. I consider this to be one of the good things that has come out of having AF!
Did you see the recent post of Prof Richard Schilling - very clear & calming!
youtube.com/watch?v=JWS29oR...
Please could you suggest what to google as these YouTube links don’t work for some of us … thank you
The answer is I find it difficult . People who haven’t had anything happen to them bumble along oblivious. But if you have had something Say AF , that security has gone . I am very prone to “what ifs” What if it happens ,,,,,……The answer is , “Is that happening now? No? Then I will deal with it when it does.” It is futile trying to control things and not just AF. Do your best to live your healthiest life and trust you will cope if something happens. I was walking my dog on Saturday . They are laying fibre cables around here and had left one on the surface and I tripped. First thing I knew I was in the ground , whacked my cheekbone shoulder and arm particularly and was covered in mud. First thoughts I am on an anticoagulant and will the shock send me into AF? Husband didn’t answer his phone as usual so I picked myself up and started to walk home . Husband picked up my message and arrived shortly after but I didn’t go into AF and didn’t really bruise . Everytime something has happened to me it has caught me in the hop like the trip. So I always carry my mobile phone remind myself I am resourceful and that most people are kind and would help if I needed it. So I guess work to some level of accepting the uncertainty, trusting you will cope and being sensible
I get your post completely. 6.5 months out from a hybrid mini maze , I still panic when I get odd feelings bumps etc, I feel myself tense up and almost hold my breath. It is getting better. Initially after my procedure and getting the go ahead to travel I was all for flying off somewhere hot, but got more and more anxious about this, so went to Cornwall instead, had a fantastic time which gave me the confidence to then book flights to spain to see my mother, again had a lovely time, although did manage to make my heart go daft at the airport for about 15 minutes, no af but very fast for me at 95bpm, this was purely anxiety. Each time you do something new the anxiety lessens. This weeks challenge is dreadful cough and cold first since stopped Amiodarone. Infection has alway been a trigger for me. Try not to use your watch, kardia or any other devices more than necessary. I’m also using a reflective log. What I was doing, how it felt, what I learnt etc . By looking back you can see how far you’ve come, and for me thinks that where impossible 6.5 months ago are now possible.
Good luck with it. When people stop asking you how you are as their first question you know you’re going in the right direction.
I find this very reassuring 4chickens, thank you. I know what you mean about making the heart “go a bit daft” (shall hold on to that phrase!) in potentially stressful or triggering situations.
I must dig out my journal as it was something I kept going daily before the ablation- great idea. And I like your focus on it being reflective. Step at a time. I’m just at the stage of travelling 8 miles up the road to visit one shop, a small exhibition at the museum and plenty stops for cups of tea!
Please keep us posted on how you’re doing and hope you’re soon over the cold. Keep well and happy travels!
My experiences are fairly minor but just to add that it does get easier with time. My DCV was 10 weeks ago and I find I go longer between worrying if a cardiac 'bump' is a return to the flutter and have gone from a device check many times a day to only a couple of times a week. I'm back to hospital tomorrow to see the ACHD cardiologist and hoping that everything is good news and that will further build my confidence.
Being positive is the no 1 thing. Life is like a computer but doesn't always know negatives. If you think something it will happen so worrying about negative events is likely to open that program even if you didn't want it.
I think you've said it well. My own AF is sporadic (last March) and when it's occurrs has so far not affected my life too badly causing, more than anything, fear that I'd need to go to A&E (an awful thought). Luckily it passes or an extra bisoprolol sorts it out.
Many suffer badly, it seems, describing the attack as like having a "floppy fish" in the chest. I have never had that at all, only a feeling of fast rate, palpitations and a strange need to breathe in deeply rather than being properly breathless.
Steve
Maybe it’s the deep breathing that works for you to keep the AF at low level. I was getting a few ectopics after the ablation and found box breathing quickly sorted things. That’s breathe in for count of 4, hold for 4, breathe out for 4, hold for 4, breathe in for 4 etc. You probably know it.
Lots of good comments. I just want to share my experience. And a lot of it was informed by this group and the WMM group.
My episodes are about 8 hours. It was really easy dealing with my episodes before I was diagnosed. I thought I was just dehydrated and rode them out.
The day I could not say I was dehydrated, I went to the Dr. than Cardiologist, and when he said I have AF the bottom dropped out. My anxiety went through the roof, and even though folks on this group and the dr said "oh you won't die" I certainly felt my world had ended.
Now 6 'short' months later I am feeling much better. I took up Tai Chi and dropped the caffeine and some weight. I was really hopeful that I had finally found a path, my last episode was 2 months ago and bam, yesterday woke up in AF. The Flec worked this time in 2 hours, did not last time.
The paroxysmal part is hard, I am still chasing triggers, this last event (and 2 others) might have been related to Parmesan Cheese.
For me as each event happens it dulls the AF a bit for me, I guess that's what persistent folks feel like, there is nothing to be gained by anxiety so they just live their lives to there best. I am slowly getting there. My anxiety went way down when I made the decision to have the WMM (scheduled for August 2024)
We all learn something new everyday. I just plan on putting one foot forward everyday that I can.
Good fortune on your Journey.
Trying to keep it short, I think this one might be popular for a while.
From dealing with the initial known episode and hoping that it is a one off, then having another and realising it’s not a one off, then accepting the diagnosis and the medications and then the uncertainty of when the next one occurs. As someone put it recently they were still grieving their care free happy go lucky life that there’s no going back to. The initial anxiety is normal and expected but not helpful in the vicious circle of triggering PAF. Some of us learn to cope better than others and some of us cope better sometimes than other times. As others said, having a plan even if that plan is to do nothing different and carry on, the fact that you have thought about it helps. For instance travelling on holiday, I thought I’m not going to let this interfere with my plans, if it happens it happens, and it did in the departure lounge waiting to fly. Because I’d told myself this, I just carried on, got on the plane and relaxed, took things a bit slower than usual and reverted back to NSR the next day while strolling in the sun and had a great rest of the 2 weeks on holiday. I will say that I’m lucky in that am not very symptomatic as a rule. There really is not one answer but reading other people’s experiences and strategies on here is a great help.
What helps for me is knowing I'm doing everything I can to prevent triggers, i.e. I don't drink alcohol anymore (sob!), try to stay away from naughty snacks, make sure I get 7-8 hours sleep a night -- and of course try to minimize stressful situations. When I don't follow my "rules," I have guilt pangs wondering if I'll have an episode. Taking care of yourself will at least alleviate some worries.
Thank you Snowgirl, wise advise 😊
As a Afib sufferer for 11 years the ins and outs of going from NSR to arrhythmia is discouraging, discomforting, and disconcerting!
The only advice I give myself is, call my EPs, remind myself that it’s ‘just’ a QoL not a life or death issue (despite feeling like it’s life or death), breathe deeply, hope I get scheduled soon for whatever the next intervention will be. Frustrating. Hang in there.
Hello - sorry I only just saw your post having just written one. Life is so busy right now but I’m totally with you in thoughts. The longer you’re there feeling well the more used to it you become. I don’t mean that you just become complacent but I think you’ll be continually amazed at what you’re able to do & then you keep feeling thankful for it - I guess maybe you are getting to that place slowly - but yes I’d say just let yourself feel whatever you feel in that moment - you will get less consumed the longer all is well & I think most of us find we’re repeating what we see others writing - hence we all understand situations better than those who’ve never suffered all this- Long may it all continue to go go well for you fingers crossed 🤗
Thank you Flipper. I think the message here is learn to live in the moment, even while having a plan for if and when things should go haywire again! I am doing more every day but avoiding lifting or taking on too much. Breathing that wonderful “box breathing” I find so helpful, meditation even just for 2 minutes, deep relaxation - I think the hard part will be remembering to keep these up once I’m going strong after the blanking period. This forum has really taught me that an ablation and being in NSR doesn’t stop me from being an Afib person! (The nice part of which is I get to keep coming on this forum where even those Wolf Mini Maze folk with their successful procedures keep returning to buck up our hopes!) Keep hopeful and happy yourself 😊🙏💐
Hi Rainfern,
Good luck in your recovery from ablation 😊
Being paroxysmal is exactly how you describe, well it is for me and I’ve had it many, many years. I feel like I’m always tip -toing around it…and I am fortunate, in that I can go many months without an episode. I base and restrict my whole life, around trying not to bring on an episode, by changes I’ve made , but Afib will strike when or if it wants to.
I’m on the waiting list for an ablation and I’ve asked myself the same question as what you have experienced, in that will I continue to tip-toe around it after an ablation? I am hoping that ( hopefully) the longer we remain in NSR, confidence will increase and anxiety about it all will lessen….I think that’s all you can hope for really.
Long may your NSR continue 😊
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