Aching heart after af post ablation - Atrial Fibrillati...

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Aching heart after af post ablation

Elli86 profile image
32 Replies

Morning guys.

Approaching the end of my 13th week post ablation. Many may have seen my other post about going into af almost 2 weeks ago😫 this was after starting to feel like I’d turned a corner and got my mojo back! Gutted! 👎

Anyway since then I’ve been taken off the anti coags due too a bleed on my eye and blood in nasal passage quite frequently and arrhythmia nurse suggesting coming off the bisop in 3 weeks as well 😬 even with the af attack 2 weeks ago. She’s suggesting it may have been a blip 🤔 thoughts on that please.

My main question is that since the af attack 2 weeks ago my heart feels like it’s still recovering. Aches slightly all the time and I just don’t seem to have any stamina again. It’s a similar feeling I used to get pre ablation, after an attack but would usually only last 3-4 days and like I say, this has now been almost 2 weeks.

Just wanted some advice from people who may know what’s going on or have had similar themselves as has sent me downhill again mentally 😫

Dreading coming off pills now to be honest and trying to mentally prepare myself that I may need a 2nd ablation. Which I’m dreading also as if it’s another 13 weeks off work then god knows how I’m going to survive financially, as I’m self employed and don’t get any income and Mrs doesn’t work either. Savings have taken a total pasting and another 3 months off will be devastating 😫 wouldn’t be so bad if I hadn’t already had over 6 months off since the start of covid. I realise the financial stress cannot be helping either.

Anyway look forward to hearing from you guys 👍

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Elli86 profile image
Elli86
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32 Replies
Buffafly profile image
Buffafly

Hi Elli, so sorry, feel your disappointment 💔 I have no idea except, thinking of posts by people whose symptoms were caused by meds more than the condition itself I can only suggest that since the ablation the ‘brake’ on your heart action may be part of the problem. I also suggest you may have to think about living with AF rather than pursuing the holy grail of ‘cure’ for now, considering your financial situation - see replies to Raquet recently. You may feel that’s an impossible ask and if so I’m sorry, only you can know what you are capable of 💜

Elli86 profile image
Elli86 in reply to Buffafly

Hi buff.

Thanks for reply.

Been told I’m coming off the meds in 3 weeks so I guess that’ll be the acid test 😬

What do you mean by the ‘brake’ on your heart action being part of the problem?

I get what your saying about accepting the af but I am ultra stubborn and not ready to give up just yet. Hoping the af was just a blip and once I come off meds I might stabilise but if not then may need a second ablation.

Buffafly profile image
Buffafly in reply to Elli86

Re the ‘brake’ comment- the purpose of bisoprolol etc is to stop your heart doing what it wants to do naturally ie it lowers heart rate, BP, reduces arrhythmic activity and as your is ‘different’ since the ablation the meds may not be as suitable as they were. Just my idea, may be rubbish 🤔

Elli86 profile image
Elli86 in reply to Buffafly

Oh right ok I see what your saying. Interesting 🤔 could be a possibility. To be honest though I had a period of a couple of weeks where I actually started to feel ok again. Was thinking about going back to work the following week but then the af struck and now gone back quite a few steps. It’s really only since the recent af attack that my heart has been aching etc. It’s weird but you may be onto something who knows. I guess I’ll find out when I come off the meds in 3 weeks 😬

Buffafly profile image
Buffafly in reply to Elli86

Best wishes 💜

Ppiman profile image
Ppiman

Mine felt like that for a long time - months. Bad luck on the bleeding. I feel certain that the "heart aches" will be muscular rather than cardiac. The "blanking period" for pulmonary vein isolation ablation is up to 6 months, so hang on in there. In a large study I read, most people had breakthrough AF in the first year, but most were fine at two years.

If you are like me, you will look back in a while and come to believe that much of what you are feeling now can be put down to anxiety. This tightens up the chest and abdominal muscles slightly and brings on a range of physical and psychological feelings, even affecting the breathing and blood chemistry slightly.

Steve

Elli86 profile image
Elli86 in reply to Ppiman

Hi ppiman.

Thanks for response. That’s very interesting about it being muscular. I have considered it also. I think a large percentage of initial onset pain after ablation is muscular personally but it did dissipate after 4/5 weeks.

I then had around week 10, no real pain at all to speak of and started to feel pretty good and had some energy back. Then comes the af and sets me back and that’s when my heart starts aching again. So the af has definitely caused the aching again so strange that it would be muscular, or atleast the muscles in the chest rather the muscle of the heart itself. It’s also accompanied with fatigue and my stamina has dropped down again along with it.

In regards to anxiety, personally I’m not really prone to it. Not saying it couldn’t be a possibility as anything is possible, but I’ve never personally really struggled with anxiety myself.

Whatever it is I wish it would jog on so I can get back to where I was headed. I was really starting to feel decent so it came at a terrible time. Not that there’s ever a good time really though.

Thanks for the positive outlook though. I’ll cling to that 6 month blanking period and hope that my hearts just taking a little longer to heal than most 🤞 I do take forever to recover from injuries to be fair and I was on the table for a decent amount of time, 4.5 hours.

Arrhythmia nurse wants to take me off bisop in 3 weeks so that’ll be the real acid test I guess 🙏🙏

Ppiman profile image
Ppiman

Now I reflect back, bisoprolol made my heart "ache" - well, I wasn't sure it was the drug, but, yes, I did have that feeling and it worsened if I pressed on with exercise for a long time after my ablation (and mine was for Afl for which there is no blanking period, I was assured). It was for that reason I was given the stress MRI. I'm glad I had that as it certainly restored my flagging confidence.

Anxiety is an odd thing. You don't have to feel it to have it because it seems some people don't recognise it as such. It results in increased muscle tone and it is this that can cause various vague issues. When the muscle tightness is in the ribs and abdomen, for example, it can affect the breathing, just enough to alter the blood O2/CO2 levels and that can bring on other effects. From what you say, though - you seem not affected.

I suspect time will be the healer, you know. It often is. And then something else comes along!!

Steve

Elli86 profile image
Elli86 in reply to Ppiman

I’m hoping once I come off the drugs my body/heart will find some sort of equilibrium again and I can start to get on with life 🤞🤞 this is currently more hole than expectancy but you never know.

Time is definitely a healer for sure. Just want to stay out of af for as long as possible now as I know afib begets afib and vice versa 🤞🤞🤞🤞

Millview profile image
Millview

Hi,I am 10 weeks post ablation and have had a very rough 10 weeks,

6 weeks ago had a episode of very like AF severe palpitations etc

Bisoprolol was increased to 2.5 mgs ( I am very poor at tolerating drugs )

I felt horrendous for 4weeks having palpitations every day generally unwell ,tired all the time.have also had some nausea

I also am not a anxious person and feel a lot of things are put down to anxiety with no reason

I am improving but feel it’s week by week not day by day !!!

I am still on flecanide 150mg twice a day

Bisoprolol 1.25mg twice a day,and like you will dread being taken off them

I have managed to keep at work but I am only working 3 ,

6 hour shifts taking annual leave to make up my hours

All I can say I totally sympathise with you ,I have a very good idea of how you feel .

Elli86 profile image
Elli86 in reply to Millview

Hi millview.

Sorry to hear you’ve had it so rough. Sounds very familiar like you say. Seems like your never going to get better.

Like I say though I did start to turn the corner around weeks 9/10, so hard to remember precisely though as all the weeks start to merge into one. Really did start to feel better so there is hope.

Think it’s my own stupid fault that i decided now was a good time to have a go on the exercise bike. Didn’t go mad and heart rate was only 110/115 for 30 minutes but felt very tired the following day, which then added to me getting rather stressed over something very unimportant and then the af attack 😫 frustrating to say the least.

I’m also not great at tolerating drugs which is why I went for the ablation, hopefully so I can get off them entirely. I also take 2.5mg bisop but that’s all I’m currently taking. I did not get on with flecanaide at all and would not go near the stuff now personally. Absolutely sucked the life out of me.

How old are you if you don’t mind me asking? Did you have a pvi ablation? How long were you on the table?

Millview profile image
Millview in reply to Elli86

I am 63 no other illnesses, came completely out of the blue, but had been having palpitations for quite a few years so probably did have AFHad cryo ablation , was not a pleasant experience!!

I honestly don’t know how long the procedure took they did hit my phrenic nerve and had severe pain ,have just started to sleep with 2 pillows instead of 3

All I can think it depends on the severity of the AF,I am very symptomatic when having a episode.

I know what you mean about all the weeks blending into one !!

I have never been to the GP so much in all my life !!

Elli86 profile image
Elli86 in reply to Millview

Mine was 4.5 hours. Was only sedated and didn’t exactly enjoy the experience myself 🤣 not nice!

I’m also or was atleast very symptomatic myself prior ablation. One thing I noticed about going into af a couple of weeks ago was that I didn’t feel quite as symptomatic. It didn’t feel quite as intense as it did prior ablation and also only last 4 hours as apposed to lasting a minimum of 18 before

Millview profile image
Millview in reply to Elli86

Yes I have felt that palpitations are milder and shorter frequency,I do take my tablets early if I feel them coming on I have decided that I need to manage this myself to some extent with the medication

I also only had sedation for the ablation

Hope you settle down

Good luck

Elli86 profile image
Elli86 in reply to Millview

Same to you and thanks for the info 👍

Buffafly profile image
Buffafly in reply to Elli86

Ooooops! Suggest you visit BHF website re cardio rehabilitation 💗

Elli86 profile image
Elli86 in reply to Buffafly

Hi buff.

We’re you referring to the post in general or a specific comment?

Buffafly profile image
Buffafly in reply to Elli86

‘I decided now was a good time to have a go on the exercise bike…..’

Elli86 profile image
Elli86 in reply to Buffafly

🤣 oh right! Yeah wasn’t my best idea but to be fair I didn’t get my heart rate much higher than it gets a points during my walks during inclines. Only 110/115 for 30 minutes. Wish I hadn’t now for sure but can’t change the past. Definitely won’t be pushing it anytime soon that’s for sure

stoneyrosed profile image
stoneyrosed

Hi , I had an ablation March this year and I also had an afib episode that was about 2 weeks after the procedure. It is now obviously November and haven’t had one since. I think it is common to have an episode or 2 in the blanking period. Your heart is still recovering and will act odd for a while yet but I am sure you will be fine 👍

Elli86 profile image
Elli86 in reply to stoneyrosed

Hi stoneyrosed.

Thanks for response and thanks for positivity. I think I would have been more ok with an early af episode as apposed to when mine happened which was around week 11. Just something in my head said it shouldn’t be happening so close to the end of blanking period but I guess time will tell.

How long after your ablation did you feel your heart stopped acting odd? How do you feel now? Better than you did before in terms of energy etc? Do you feel like your heart is working more efficiently now?

stoneyrosed profile image
stoneyrosed in reply to Elli86

Hi Your still in the blanking period of 6 months which means you may expect af ectopics and other misplaced beats within this period. I was completely worn out for about 4 months but was slowly improving and feel much better despite still getting 1-2 secs of fast heartbeats. I failed to get the 3 month follow up call from cardio regarding meds so have only just come off meds about 4 weeks ago, this has caused me to gain much more energy and to feel a lot better physically and mentally. Try to be a little patient and don’t worry too much I’m sure you will be fine. 👍

Elli86 profile image
Elli86 in reply to stoneyrosed

The blanking period is the first 3 months following the procedure. That’s why I was concerned that my af had come right at the end of it but hoping it’s a blip and arrhythmia nurse said that it is a possibility.

I’m coming off meds in 3 weeks so I guess I’ll find out then 🤞hopefully I have the same reaction you seem to have had 👍

stoneyrosed profile image
stoneyrosed

Your correct in the fact it is 3 month my mistake. But I think as long as your not having regular bouts of AF things will eventually calm down. Mind what you eat & drink keep calm and I am sure you will be fine. Best of luck 😊

Elli86 profile image
Elli86 in reply to stoneyrosed

Hopefully your right stoney 🤞 thanks for input 👍

Singwell profile image
Singwell

I have definitely had the aching. In my case this was mostly earlier than 13 weeks in and was told that this was normal and due to cellular healing. Perhaps as you had a one off episode recently your heart is doing a bit of work on itself. It may well be - as someone suggested - that coming of bisoprolol now is a good idea. I was told 'if your heart no longer needs the meds they sometimes bring about bigger side effects'. If you're worried ask if you can come down slowly, not cold turkey. That's how I handed it and it allowed me to adjust. As to the work, I know how that feels. We run our own business, so scheduling 12 weeks off was a big deal. We organised cover for my trainings although I was able to do a few isolated days after about 10 weeks.

Hang in there - you might find that the AF two weeks ago was just a blimp and that things will start to improve. It sounds like it'll be slow steps so be patient with yourself. As for giving up - too early to think about that. My humble opinion.

Elli86 profile image
Elli86 in reply to Singwell

Thanks singwell.

Very sound advice.

Interesting they said the aching was due to cellular healing. I’ve not been given any info like that from my arrhythmia nurse what so ever. Just seems like they want to get you off the phone. Hoping my follow up call in a few weeks is going to be more informative.

In terms of the meds arrhythmia nurse told me I’m going to be coming off them once we’ve had the call. Was thinking about tapering off slowly starting now but feel I’m in a catch 22 at the minute. Feel like I want to make sure I now stay in NSR for as long as possible before I come off the meds so my heart has a chance to get itself back into a routine of being in NSR but at the same time what your saying and what others have said makes a lot of sense.

There’s just part of me saying that if I didn’t need the meds then I wouldn’t have gone into af 2 weeks ago. Bloody hard decision to make at the minute to be honest. 🥴

Prior to ablation I was ok on 3/4 of tablet so may start taking that tonight and see what happens. Usually around a week after going down to half tablet, pre ablation, my heart would go into af. So I know where the bar was set before. Just want this too have worked so badly, it makes it a very tough decision when you don’t know for sure what is best. If I hadn’t gone into af 2 weeks ago I think I’d be brimming with confidence right now.

The Work side of things is tough. I run an business as well and it makes things extremely complicated and stressful. Trying to conserve all my mental energy on getting better but it’s far easier to say that than it is to put it into practice.

I really hope it was just a blip like you say and things improve from here on out 🤞🤞🙏🙏

Thanks again for advice 👍

Singwell profile image
Singwell

You're welcome. One thing I've learned through this AF 'adventure' is not to hand over my power to make decisions. Your arrhythmia nurse can ADVISE or SUGGEST that you come off the meds, is in 'let's see what happens'. It is your choice. Personally I think you're wise to stay stable until after your review. With my arrythmia nurse we made the same decision because things were unstable I seemed to be OK on a half dose in the evening but not in the morning. Only this last week have I made a personal decision to take 3/4 of a dose in the morning to see how I do, because I'm feeling up to it. It is totally your right to say - I'd like to do things step by step.

Elli86 profile image
Elli86 in reply to Singwell

Yeah I feel like I want to keep my heart stable for as long as possible but I also want to see if the ablation as worked so it’s a catch 22. I’m in two minds now whether to start tapering off tonight with a 3/4 dose of my 2.5mg bisop. I only take one 2.5 a day and like I said before I used to taper to 1.25mg but then find that within a week I’d be back in AF.

What meds do you take yourself? How long post ablation are now?

Singwell profile image
Singwell in reply to Elli86

I'm on Flecainide, Diltiazem (as rate controller and also for BP) plus Apixiban. Originally on 50mg Flecainide X 2 and now taking 25mg in the evenings which is working fine I'm experimenting with slight reduction of morning pill. My choice.

I'm 7 months post ablation but bear in mind I'm not typical. They told me before leaving the hospital that I could only expect a 40% chance of success due to my wriggling during the procedure. Pain response and I was up to my limit of analgesic. Nobody's fault - my BMI is low and they couldn't safely give me any more. I know I was in there about 4 hours. Luckily out for most of it. Clearly my pain receptors weren't though.

Elli86 profile image
Elli86 in reply to Singwell

I vaguely remember wriggly myself a little and them telling me that I needed to stay still but I was out of it to be fair. I felt everything if I’m honest but it was more the thought of what they were doing that got me. Nobody mentioned any issues after the ablation though. Only that they had to cardiovert at the end, had too use 2 veins as one wasn’t big enough to get the probes down and also that my blood pressure dropped quite drastically. There was no mention of me causing issues with moving etc.

Elli86 profile image
Elli86

Hi guys.

Does anyone else have any info that may be relevant in regards to this post? Was hoping may get a few replies from people who have experienced similar or some more advice from people who may have some info as to why this may be happening.

Thanks again 👍

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