The return of AF

[dedeottie]

Well, 8 months after my ablation for AF , it has made its unwelcome return.

I started by feeling an increasing burden of SVE’s then noticed a different feeling which when I checked on kardia, confirmed that I am constantly slipping between slow AF, supraventricular ectopics and normal rhythm. Whatever time of the day I check, it is the same. It feels very strange. On the plus side the AF rate is about a third of its previous rate and if it stays that way I will count the ablation a success of sorts. At the moment however I would be lying if I said I wasn’t disappointed.

some may remember that 6 weeks after my AF ablation I had another, this time for tachycardia and flutter. This seems to be holding 🤞 After so many years with strange heart rhythms it was wonderful to be in normal rhythm so now it is taking a bit of getting used to being out of sync again. 😂

I have sent an email to o my arrhythmia nurse and await her advice but as I am unable to have any more ablations and as the rate is so low (60’s /70’s) I think I know the answer will be to just get on with life and that is exactly what I intend to do.

Jeanjeanie , is it you who said that your AF was still there after ablation but at s much slower heart rate? Has it stayed at that low rate? Does your AF bother you now?

Im looking for reassurance! I know that pace and ablate is the next option for me but wouldn’t want that all the time my AF was slow enough to not be putting strain on the heart.

Thanks for listening everyone. X

[jeanjeannie50]

Hi dedeottie

Yes after 3 ablations and then being told I wouldn't be offered any more, my heart rate is now between 60-90bpm. Life is good, so long as I don't try to walk too fast. I'm certainly not good at hurrying anywhere, but can walk for miles and climb hills at a reasonable pace. To be honest the more I walk and exercise the better I feel. I sometimes become aware of my heart rate if I've forgotten to take my Bisoprolol 2 x 2.5mg.

Jean

[Gumbie_Cat in reply to jeanjeannie50]

I’ve just been moved to 2 x 2.5mg. (Was on half of that.) I’m worried that my legs will still feel like jelly on inclines and stairs. Not planning to climb a mountain, just up the hill into town without tired legs.

Does that feeling decrease once you’ve accepted that you’re in A Fib constantly? Also, does it still have any episodes where it gets more ‘aggressive’ again? It’s going to take me a while to come to terms with, that I’ve moved so rapidly to permanent!

[jeanjeannie50 in reply to Gumbie_Cat]

Just over 3 years ago, I gradually started to feel ok in permanent AF. Since going on to Bisoprolol in October last year (stopped Flec and Metoprolol) I've been more aware at times of my heart rate, but only when I've forgotten to take my bisop. Over the last few months I've noticed an ache in the lower area of my legs and a slight headache (have never had headaches before) . I'm seriously wondering whether to decrease the amount of supplements I take, as at the moment take so many. Also wonder whether it could be caused by the Bisoprolol.

Jean

[Gumbie_Cat in reply to jeanjeannie50]

Thanks! I feel that I’ve been having headaches lately - but I’ve always been a bit prone to them. The leg thing is weird for me - just like there’s no energy in them. Guess I just need to push through. Wondering if I get passed back to cardiologist rather than EP now, or maybe GP of course. Though hopefully the meds get all sorted first.

It does give me hope that you’re getting on fine in permanent AF.

[kkatz in reply to Gumbie_Cat]

Gumbie cat the legs like jelly thing could be bisoprolol.I can't won't take them.Feel like wading through concrete.q

[Gumbie_Cat in reply to kkatz]

I have a feeling it is that. Stuck with it at the moment, but will make a fuss if it continues!

[UK_5010 in reply to Gumbie_Cat]

I'm on Sotalol but sometimes get the odd feelings in my lower legs. I find compression socks often help and have been known to sleep in them sometimes. May not help you but worth thinking about perhaps.

[Gumbie_Cat in reply to UK_5010]

The chiropractor mentioned that those might help - but the struggle getting them on!

[Afibflipper in reply to Gumbie_Cat]

I tried last week with the elastic socks you mention - what a laugh - they weren’t coming off - like a big overgrown baby when they pull their socks off with a struggle (NOT a pretty site)

I’ve mentioned before I usually tolerate high dose of Bisoprolol - last year 15mg increased to 17.5mg - legs just felt like I was trying to pull a transit van with bungee rope (couldn’t do it). Since Nov ablation I’ve been back up to 12.5, been in NSR for nearly 2weeks, reduced bisoprolol to 2.5 now but still on digoxin and lower legs swollen so maybe too much medication now in NSR so seeing EP tomorrow. Xx

[Gumbie_Cat in reply to Afibflipper]

So glad that NSR is holding for you - if a little jealous! I’ve been told that there was too much fibrosis found at my ablation to make further procedures worth the risk. Even a cardioversion would entail years on Amiodarone and wasn’t advised. So it’s rate control now. It all seems to have moved so quickly - last year I was getting episodes once a month - though days long -with NSR in between. Up until October.

Yet have been told they would have needed to catch it years ago. I have had tests in the past but it never got caught until my Apple Watch. So thank goodness I’ve got the anticoagulants now.

I’m accepting one minute and angry the next, as I wish they had told me sooner that this was the case. I knew I had been listed for a cardioversion but they said they would remove me from list. Then I got a call today saying to come for the cardioversion this week, but once I explained, it was obviously a case of right hand/left hand!

So it’s Bisoprolol and getting a few more pounds off, living healthily - and hoping that I don’t need to fight with socks on top of everything else! I’m sure I saw a ‘Bob and Brad’ YouTube video recommending TubiGrip as an alternative to the impossible socks.

[Afibflipper in reply to Gumbie_Cat]

I’m so sorry I didn’t realise that route had been ruled out, not surprising your emotions are all over the place, it’s a horrible situation isn’t it! You’d have to ask maybe a pharmacist or GP re the tubigrip - I was looking at information for myself and my leg issues - the socks do help. What I understand is, the socks have different pressure areas woven into the sock, so it compresses throughout the area eg lower leg so there is the right level of compression to assist the circulation to move back up the limb and help to move the swelling of fluid collection. I’m not sure if the compression from tubigrip will suffice in that it’s to support inanity or to try to ease pain in some instances not strictly to prevent DVT etc but please check if thinking about them or other aid for assistance.

There are actually devices that you can get to put the sock on first and then you pull the whole sock on (type into Amazon “compression sock applicator” ). One shows how to use it maybe a video on how to use - I wonder if it could be reversed to remove it or maybe there is a removal device.

[Gumbie_Cat in reply to Afibflipper]

I’m just leaving it all for now. I used to get a slightly swollen left ankle, but strangely it’s gone over the last year. Possibly due to weight loss, not sure. I also do plenty of ankle and calf exercises and stretches. So I’m crossing fingers for now!

[MainlyMyself in reply to Gumbie_Cat]

The leg feeling you talk about is exactly what I experienced when on Sotalol- a standard beta blocker. It works like a tap, closing off the energy to your legs in order to protect the heart from stressful activity. I could not tolerate this total lack of energy suddenly coming on when I was walking uphill or up stairs and transferred to Ramapril - an ace inhibitor which relaxes the veins to minimise stress on the heart and although I still experience fatigue, it is more manageable though I still have difficulty climbing stairs and walking up hills. My current problem is managing the balance between heart medication and glaucoma medication. As I am in my 70's I am surprised that my medics had not anticipated that there might be a difficult interaction. Has anyone else experienced this?

[Gumbie_Cat in reply to MainlyMyself]

I sometimes wonder if anyone considers those interactions, and also how our mental health is affected by the physical problems. It feels like everything is in separate boxes.

[4chickens in reply to Gumbie_Cat]

A holistic approach from the doctors and specialists would be amazing but seems beyond them. I spent forever trying to convince my EP that my AF was linked to the menopause. When I worked in the mental health field it was just as bad we’d attribute people’s physical conditions to their mental health or side effects of the powerful drugs, it wasn’t until we had a gp coming into the unit weekly that things started to slowly change.

[Auriculaire in reply to jeanjeannie50]

When I was on Bisoprolol 5mg a day I had a headache start like clockwork 2 hours after I had taken the tablet. I very rarely get headaches . I had severe leg pains too but that might have been the Préviscan ( anticoagulant ) as they came on at night after taking the Préviscan.

[dedeottie in reply to jeanjeannie50]

Thanks for responding do quickly Jeannie. That is reassuring. To be honest I feel better when it is AF than when it flips into SVE. Hope it settles on one or the other soon ! X

[Elizka]

So sorry to hear this! I hope you get it resolved soon.

[Hidden]

Sorry to hear your news but try not to be downhearted. A similar thing happened to me after my second ablation and around 8 months after, my EP had booked me in for a third. Around the same time I had my thyroid checked and it was marginally overactive. I had some treatment to bring it back in range and the SVT’s reduced and the ablation was postponed (and still is!) My EP thought it was likely to be a contributory factor but also said that SVT’s can occur for short periods. Try and remain calm, it’s obviously good that your heart rate remains lower than before the treatment……best wishes

[dedeottie]

Thanks Flapjack and it is heartening to hear that you havnt needed the third ablation. I have had a full set of bloods done recently and no mention of a dodgy thyroid but it is worth another check I think.

I am fairly calm about this but do feel a bit deflated as after 8 months I was daring to think I was fixed for a while but if the HR stays as it is I will consider myself at least partially fixed!

It’s lovely to chat with you again Flapjack. X

[CDreamer]

Sorry to hear that, always disappointing when arrythmia returns. Can’t really add anything to what’s already been said but sending very heartfelt best wishes. 😘

[kalgs]

Have you had the EVGs checked by your medical people . I’ve had a run of SVEs and what appeared to be AFIB but the Kardia was wrong and their analysis team also got it wrong.

I had 2 weeks of SVEs recently after my ablation in 2021 . I’m now back to normal . My EP suggested I may have had some form of infection?

The SVEs seem to come from nowhere, and have disappeared on their own accord without treatment

[dedeottie in reply to kalgs]

That is interesting Kalgs. I must admit that I have wondered if the AF diagnosis on my 1 lead Kardia, is missing something as this AF feels totally different to how it used to be and more like a lot of SVE’s. To be fair , kardia does only say ‘ possible AF’. I have sent an ecg to my arrhythmia nurse but she is out of office till Monday. I will report back! X

[kalgs in reply to dedeottie]

I had my ECGs looked at because the AF felt different as well

[Autumn_Leaves in reply to dedeottie]

You definitely need an opinion on your Kardia trace. I’ve had both my Kardia and Apple Watch give erroneous AF classifications to what the cardiologist identified as an occurrence of PAC and PVC ectopics in the one trace, occurring as runs and isolated beats. He sought a second opinion from a senior EP in the department and he came to the same conclusion. These traces all had a slower HR, whereas the true AF tracings were at a higher HR. You really need an experienced eye to look at your tracings.

BTW, I think Kardia and Apple Watch are great tools to have at our disposal, if we’re fortunate enough to have them, but we are just laypeople and these devices can’t diagnose, and certainly not with an algorithm. We do need an expert eye to take a look at them. The best outcome is that if they ask you to come in and have a 12-lead ECG that will give far more detailed information. I do sincerely hope your ablation is holding out and that things settle down soon.

[DKBX]

Acceptance and determination (A&D) to get on with life seems to be the final outcome for those of us with arythmias that can’t be resolved and are destined to just get worse. Unless pace&ablate (P&A) never fails, I think A&D may be the best thing!? Is A&D better than P&A?

[dedeottie in reply to DKBX]

yes I agree that acceptance is key to getting on with life. All the time heart rates are below 100 I won’t consider P and A but at higher rates I would worry about extra strain on the heart I think. I think success rates for P and A are very high. X

[4chickens]

sorry to hear about the return of your AF, it’s the disappointment that’s so hard to get past.

[dedeottie in reply to 4chickens]

You are so right.

I have now spoken to my arrhythmia nurse and she is going to bring forward my September appointment. She has asked me to take some Kardia readings with me incase I am in NSR when they do the ecg . Thank goodness for arrhythmia nurses!

As usual, I feel much better when I know that I have done everything I can and that it’s all in someone else’s hands.

Best wishes

Jane