AF again: last night I had my third AF... - Atrial Fibrillati...

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AF again

stoneyrosed profile image
48 Replies

last night I had my third AF attack since my second ablation 6 weeks ago. This one lasting 3 hours. This really affects my mental health, I feel so deseparate as I hate the symptoms so much, I fear when the next attack will happen, it affects my whole life, I don’t go anywhere in fear of it, I don’t have a relationship because of it, I would not want to put another person through the misery that I carry with me every day. The failure of this second ablation as me feeling like it is the end of the road, I don’t want to carry on with flecanaide but feel I am going to have to. I am so sorry for this negative post, this is not a question just an observation of my life how I see it now. Forgive me but I feel so depressed .

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stoneyrosed
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48 Replies

Sorry to hear you are feeling so down about things at the moment. Following an ablation it can take up to three months or even longer for the heart to properly heal. During this time you may experience runs of AF, ectopic beats (missed heartbeats) and a heart rate faster than before. It will be helpful if you record such events so that they can be discussed at your review appointments. Please do get in touch with our Patient Services Team if you would like to discuss things through with someone as they are able to offer advice, information and support: info@afa.org.uk

stoneyrosed profile image
stoneyrosed in reply to

Thank you Katrina

I know it’s depressing when and if it happens, but as has been said many times in your earlier posts, what you are experiencing is common so soon after an ablation. It does not mean your ablation has failed, it is part of the recovery process and might continue for three to six months (in my case 7 months) after the procedure.

By all means, if it helps you then continue posting although the responses will be much the same. If you are convinced that something else may be causing the episodes then you should contact your EP or the Arrhythmia Nurse attached to your hospital.

Paul0208 profile image
Paul0208

Please just be patient and try to let the anxiety go. Stress and worry was what gave me AF for a few hours a couple of years ago. Not had it since. Partly because of the realisation that a fit and healthy person can go into AF with no ailments apart from a worried mind and a stressed body.

stoneyrosed profile image
stoneyrosed in reply toPaul0208

Thanks Paul

What’s your situation now, has NSR returned?

stoneyrosed profile image
stoneyrosed in reply to

Thanks for asking. Yes I was in Af for 3 hours , it’s not the length of time that is so concerning for me it is the actual fact that I have now had 2 ablations and it seems both have failed. I am (was) a very active guy but now I have nothing left. I cannot run walk excercise socialise it seems the end of the line for me. I see a cognitive therapist with anxiety issues but I cannot seem to solve or crack it. I am a grown man who was in tears this morning and I know there are worse conditions than this and I feel as a man I shouldn’t get or feel like this but I am very down at the moment. Sorry I haven’t replied to many messages I just don’t really know what to say.

in reply tostoneyrosed

We know it’s hard and you are not alone. Like you, have had 2 ablations, one in 2016 and the last one in 2018. Apart from some early blips soon after the second, I had no problems until 7 months after the procedure when I had about 8 in quick succession. They were quickly stopped using Flecainide as a PiP and I was put on my EP’s list for a third but amazingly the episodes stopped and I haven’t had to take Flecainide for almost 2 years now.

We have said many times, over the 8 years I have been a member, there thousands of posts from members who are experiencing exactly what you are facing now during the first three to six months of their recovery period but they gradually improve and the truth is, we rarely hear from them after the blanking period has passed. You are only 6 weeks away from your ablation and you almost seem determined to see it as a failure by ignoring all the advice and evidence to the contrary. We all desperately want to help you but if you are not prepared to take on board what everyone is telling you then I’m not sure what else we can do as you only seem to want to torture yourself.

I really don’t know what to suggest. Heart specialists will tell you that your current position is normal. GP’s who are familiar with AF will say much the same but they might see that you need more specialist treatment to get you through this.

Of course no one can offer guarantees but we can share our own experiences and I promise you, it will not be possible know if your ablation has failed for at least another 6 months. Read my first reply to your first post after your ablation where I tried to explain that an ablation is a procedure, not an operation. The treatment used to scar the tissue which prevents rogue impulses needs a long time to heal before it can prevent AF from recurring.

Sorry if I seem harsh, but I’m running out of ideas to make you aware of the reality…….please try to be a more patient patient…..

Buffafly profile image
Buffafly in reply tostoneyrosed

You’ve made a big step sharing your feelings so you have nothing to be ashamed of. Being honest about how you feel is much better than being ‘manly’.

stoneyrosed profile image
stoneyrosed in reply toBuffafly

Thank you Buffafly

4chickens profile image
4chickens

Gosh I’m sorry your feeling so depressed and anxious, I can’t really offer any reassurance that’s other haven’t already done. Does your cbt therapist know how low you feel. Please get some help with your feelings of futility. In the meantime try writing a list.What might happen? if it does what’s the worst outcome. How will you cope. What you could do to help yourself. Knowing that your AF will pass.

Have you tried relaxation scripts, mindfulness, yoga, a walk in the countryside. Please seek some help with your mental health, and give the ablation a chance.

stoneyrosed profile image
stoneyrosed in reply to4chickens

Thank you for your reply 4chickens

4chickens profile image
4chickens in reply tostoneyrosed

My pleasure, please keep sharing x

Buffafly profile image
Buffafly

Hi, if I were my husband I’d say ‘Pull yourself together, my wife had AF for eight days recently, what have you got to moan about?’

That’s really harsh but won’t do any more good than all the stats and stories about the blanking period etc because the problem isn’t the AF, it’s your mental attitude towards it. There’s no reason for you to give up on life because you have AF.

It’s good you are having therapy but you sound seriously depressed and I urge you to get some urgent help to tide you over this terribly difficult period for you. You are reacting as if you have had a bereavement, which in a sense you have. The pain will lessen in time but just for now you really should have professional support.

Best wishes ❤️‍🩹

stoneyrosed profile image
stoneyrosed

Thanks for all your comments, I will take everyone’s messages on board. Please don’t judge me to harshly. As depressed as I am I know I’m a fighter and will keep trying. I won’t be posting anymore as I know my posts are negative and don’t really help anything or anyone. Thanks for your help !

Anon2023 profile image
Anon2023 in reply tostoneyrosed

Hi. Most of us have felt depressed at some point and I really hope nobody would judge you for it. You can post whenever you like, we are all here to support each other. Please don’t cut yourself off by thinking that people don’t want to help.

stoneyrosed profile image
stoneyrosed in reply toAnon2023

Thank you

Auriculaire profile image
Auriculaire in reply tostoneyrosed

You should not stop posting especially if it helps you. To look on the bright side 3 hours is not a very long period in afib. Are you very symptomatic ? If you are then you just have to wait it out. If not , try to ignore it and get on with what you want to do. The time to start worrying about whether the ablation has not been successful is not now. Carrying on with Flecainide if that knocks the episodes on the head might just be for the 3/6 months of the blanking period. Also some people need a third ablation before their afib is banished.

stoneyrosed profile image
stoneyrosed in reply toAuriculaire

Thank you

in reply tostoneyrosed

Nobody wants you to do that, expressing your concerns probably acts as a safety valve and that is important. I think we understand that your problems are deeper than your AF and that it’s a combination of a number of things which are causing you to feel the way you do. Don’t worry about the effect your posts are having on others, at the moment it’s you that’s important and although some of us may not be best placed to deal with depression, there are many who can help as shown in many of the replies. We know extreme anxiety can have an adverse effect on recovery from an ablation but we also know there is no tap to turn off feeling depressed, so please don’t feel that you shouldn’t express your concerns.

You surely are a fighter, but there is no reason to fight this on your own……

stoneyrosed profile image
stoneyrosed in reply to

Thank you flapjack. Yes I am sure other issues are at play here. It’s a pain inside but not a physical pain, to difficult to describe. Thanks for understanding as best you can.

dedeottie profile image
dedeottie in reply tostoneyrosed

I am only just replying to your post as initially I felt my reply might make you feel worse but have decided to reply and hope for the best! I will start by saying that I am sort of in the same predicament as you but probably with a bit less hope than you actually have as my AF has returned in exactly the same way as it was before my 2nd ablation nearly 4 weeks ago. I have AF /tachycardia/ flutter all the time at a rate of around 130 bpm. This was partly expected because my EP only ablated round the pulmonary veins with a cryoablation and he thought he may have to return to do a RF ablation in the main part of the atria. If the next one fails, for me it will be a pace and ablate which quite honestly, by then I will welcome with open arms! I have a past history of medical disasters throughout my AF journey so it has not been plain sailing. On top of this I am also a very anxious person . So, how am I dealing with all this ? Well, I have learned a lesson from my son who, as a result of deep infection after Achilles’ tendon surgery, has had to face the possibility of losing his leg beneath the knee. Whilst not following medical advice blindly, I have put my trust in my new EP, instead of worrying constantly I have insisted on being given the full picture of what he is expecting to happen. I am keeping my arrhythmia nurse informed of my condition so that any necessary changes/ decisions can be made and I have faced the ultimate possibility of having a pace and ablate if ablations don’t work. Actually the worse case scenario doesn’t seem so bad. Waiting lists add to my stress greatly but as there is nothing I can do about that I have made a decision not to to agonise over that. So, basically , I have taken control over everything I can and relinquished responsibility for anything I can’t influence. For me this makes my anxiety much less of a problem.This approach may not work for you and it has taken me a long time to get to this but it is worth a try.

I do totally get how you feel. When you are in the middle of all the anxiety it is hard to make a change. You may need help from your GP with this.

I wish you all the very best. X

stoneyrosed profile image
stoneyrosed in reply todedeottie

Thank you so much for sharing your personal information to help me. I am keeping all of these replies and I know they will help me in the future going forward and help me deal with my personal issues. I get totally where your coming from and thank you so much for your help.

bassets profile image
bassets

Is there anyone you can confide your feelings to - a relative or a friend? That might help you know. Most of us here have experienced feelings like this . It took 18 months for me to calm down afterI was diagnosed with Af because I was so frightened. I had to shake myself up and change the way I saw the predicament I found myself in. It was all too easy to give in to the fear and stress, but after visiting this site and reading all the kind comments here - and learning a lot - i was able to calm down and accept that this is a chronic condition but can be managed. After my ablation - my first - I find myself having Af every so many days and use a PIP, but I'm determined not to let it get the better of me now.You only had your second a few weeks ago so give everything time to settle down, rest, and stop beating yourself up. I hope you will be able to get back on track soon. You might try mindfulness which helped me a great deal.

Best wishes.

stoneyrosed profile image
stoneyrosed in reply tobassets

Thank you so much

Hilianna profile image
Hilianna

I hope your second ablation is more effective soon and your heart rate settles. From what people are saying, maybe it is early days for the ablation to be fully effective. It is a nuisance having with this condition but ways have to be found of living with it. Not being able to exercise like you used to must be frustrating, particularly if it formed a big part of your social life. - maybe there are lesser exercises, like walking gently around a park, at your pace, that you could try. Build in a coffee break somewhere along the way. I have found this helpful, although there are times when, like you, I long to be able to stride out and tackle something more strenuous. But this is no longer possible. Fingers crossed that it is still early days for the ablation to help.........

stoneyrosed profile image
stoneyrosed in reply toHilianna

Thank you so much for your message

MoyB profile image
MoyB

Ok, you had your ablation and people have all responded to your anxiety about that, but I'd like to talk about something else.

Back in 2016, I became very depressed due to having been diagnosed with umpteen medical conditions within a few months. They just kept coming! I won't give you the list, but believe me, I went to a very dark place for a while.

A friend then gave me a lovely notebook which she had carefully stitched a cover for and something in my befuddled brain made me think, 'She's gone to all this trouble for me. I MUST use this book.'

I started to write down anything positive I could find in each day. If I had a bad day, I simply didn't record anything. I was determined that this would be a book of positivity and 'silver linings'. It turned my life around! Honestly - it really did.

I began to look for things I could write in my book. Once I wrote that I saw goldfinches in the trees because I was walking so slowly. I noted that as a 'silver lining'. My life had slowed down so much that I began to see things I had never noticed before - and a lot of those things were good!

It took me a long time before I realised that I was writing in my book every day! It may have been, 'I cooked dinner today and didn't need to sit down.' Or it may have been, 'We took a drive to the beach today and enjoyed watching the people in the sea.' I started to collect a postcard whenever I could get one, so that I could look back in my book and be reminded of happy days out.

Over time, I noticed that my positive posts and 'silver linings' were getting a lot longer and from that I could see that life wasn't as bad as I thought it was.

As I became less depressed and anxious, my physical health also began to improve. It's taken a long time to get where I am now, but back in 2016 I felt my life was over. Now I can see that I have a good life ahead of me.

I had my first ablation on July 6th. I'm getting short episodes of AF but I'm trusting the people on this forum who tell us that it sometimes seems to get worse before it gets better; that we need at least 3 months for our hearts to heal; that we cannot deem the procedure to have succeeded or failed until many months afterwards.

I understand your anxiety - I really do - but speaking as someone who's 'been there', I know it's possible to feel better. Try and look for something positive each day instead of dwelling on the negatives and you may be surprised to see that there can still be joy in life.

xx Moy

stoneyrosed profile image
stoneyrosed in reply toMoyB

Damn your post made me cry. Such a beautiful thoughtful post I am so grateful you have taken the time to message me this. I am keeping all the replies to my post in my notebook as I am sure they will be so helpful. I know I am struggling as I am in bits as I am typing this but I will be trying my hardest to get under control. Thank you xx

MoyB profile image
MoyB in reply tostoneyrosed

((((( ❤️❤️❤️))))) xx Moy

stoneyrosed profile image
stoneyrosed in reply toMoyB

I went for a slow walk along the canal yesterday as I have done in the past on numerous occasions, I was taking everything in as I walked slowly and lo and behold in the field on the other side of the canal an Heron was stood still staring at me. I have never seen one all the time I have walked along that canal. It must have been your post 😊. Thank you

MoyB profile image
MoyB in reply tostoneyrosed

How great to see that! Let me know what other things you see now that you might have otherwise missed. Xx Moy

DKBX profile image
DKBX

I’m with you on this. Four ablations, more cardioversions, and still on flecainide and beta blocker, bp control and anticoagulant. It’s frustrating and anxiety-producing. I can commiserate.Best I can offer: breathe deeply and consciously, get outside as much as possible, remind yourself that it’s more inconvenient (even debilitating) than truly life-threatening. Distract yourself and get on with joy wherever you can find it. It sucks but good luck.

stoneyrosed profile image
stoneyrosed in reply toDKBX

Thanks much appreciated

Hi stoneyrosed -

I'm so sorry to hear how bad you are feeling. For anyone who hasn't been there it's hard to understand what it feels like to be in despair. All I can tell you is that you are not alone and however hard it is to see right now, this too will pass.

From your post I can identify several of the cognitive distortions that CBT seeks to address, such as 'All or Nothing Thinking' (the ablation is a failure), Fortune Telling (going to have to continue with Flec), for example. It may be that writing these thoughts down and going through a worksheet might help you identify and address them. It may be that CBT isn't the right approach for you right now - much as it's a well evidenced and often effective approach it isn't for everyone and it isn't for every occasion.

I hear you talking about who you 'used to be' (a very active guy) and that you're really struggling to identify with who you feel you are now (someone with active AFib). I can so relate to this. My 'self image' is as an active, fit and healthy, youthful woman. Before the AFib struck I was struggling with finding myself as a pensioner and now a 'sick' pensioner! So much of the suffering I've experienced has come from resisting what is, and the resistence makes it 100 times worse than it actually is. I do wonder whether that is something that you're finding the hardest about your situation? When I catch myself going into that rigid pose of refusing to accept what is, my mantra is always the great Vogon catchphrase "Resistance is futile"! (Hitchhikers Guide to the Galaxy). It always makes me laugh and loosen up a little. Finding even a little humour in your situation can help a lot. Rigidity just makes everything worse.

Please do know that, as others have said, this forum is here for you. Take is one day at a time, one hour at a time when necessary and use all the resources you can find to keep moving forward. Things will change, sometimes when you least expect it. Take care of you .

Helen ❤️

stoneyrosed profile image
stoneyrosed in reply to

Thank you so much for your thoughtful reply. I hear everything you say and I do relate to what you say. I am reading the rules of the universe and also a book by Eckart Tolle called The Power of Now which are very helpful in trying to keep me grounded. Yes the sudden switch to been active and having lots of friends to suddenly been vulnerable to activity and not seeing as many people makes the whole thing difficult upsetting and well depressing. Thanks to all the fantastic people on here for their input on my post it is Recieved with warm hearted mess. Thank you

in reply tostoneyrosed

I love The Power of Now! This moment is all we have, after all :)

TM93 profile image
TM93

I am so sorry you are miserable. You mention depression. Have you considered that you may have clinical depression that may be helped by treatment?

stoneyrosed profile image
stoneyrosed in reply toTM93

I do see a therapist every week to deal with some issues I have. Thank you

Snowgirl65 profile image
Snowgirl65

Not to worry -- you're in the midst of the blanking period after your ablation and episodes are bound to happen. Your heart is still healing from the trauma and it'll take time before all calms down.

stoneyrosed profile image
stoneyrosed

Thank you

theohappy profile image
theohappy

So sorry! I know it is hard! You’re still in the blanking period. Don’t give up yet .

stoneyrosed profile image
stoneyrosed in reply totheohappy

Thank you

gerickson021 profile image
gerickson021

I have had two cardio versions since my ablation 2 months, its not uncommon. Knowledge is power, its all out as to the statistics and outcomes from an ablation. A second ablation is common. The good news is that in Europe they have the PF ablation, way more effective, faster and safer. I will go there if I need a second. Out of pocket cost there is about $20K.

Hdev profile image
Hdev

Yes, indeed,,, many of us join you in shared feelings of what it’s like to live with afib,,and it’s not pretty very often,,,it’s scary,difficult,lonely,painful,uncertain,and nothing positive can be said sometimes except it’s not terminal and not catching to others ,,afib has made me a person I was not before,,,so it’s hard to find much positive to say,,hence,,,your feelings are certainly valid as are mine,,BUT we are here and we don’t get to change what we have,,,no cure here,,we can only change what we do about it and how we deal with it mentally and emotionally,,albeit physically we alter between better or worse ,,,I am trying right now to begin a script for Flecanide and I am scared of it,,I’ve worked myself into a “tizzy” wondering if it will harm me in some way,,,I totally understand your tears and frustrations,,,it is so uncertain,,,this forum has helped me so much as we share many of the same hopes and concerns,,,I may not have answers for you or for me ,,but I believe in learning about this disease,,and sharing the journey,,,,be well,,,tomorrow is bound to be better,,,I have hope for you and for me and all the afibbers out there!

stoneyrosed profile image
stoneyrosed in reply toHdev

I will never forget my first visit to my GP who confirmed to me I was having AF episodes. She said do not be concerned you will be eligible for an ablation and that will sort you out. So my hopes have always been on the fact that an ablation will sort me out. I now believe that was an unprofessional thing to say and that most ablations may improve symptoms but they are most certainly not any kind of a cure for most people. Thanks for your post all the best to you !

MoyB profile image
MoyB in reply tostoneyrosed

When the consultant spoke to me about having the ablation done, he said, 'I can't turn you into a 21 year old, but I CAN improve your quality of life.' I'm hoping he was right! Xx Moy

stoneyrosed profile image
stoneyrosed in reply toMoyB

I hope so too 🤞 x

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