Help with worsening Atrial Fibrillation

[kitenski]

Afternoon,

To try and cut a long story short, I was diagnosed with A Fib in 2018, had two ablations in 2019 however it returned in 2021. I am currently 57.

My cardiologist put me onto flecainide and bisoprolol, however I still continued to get episodes but it seemed to settle fairly quickly.

Midway thru 2023 (July) I was getting an elevated heart rate at rest, when walking. Even when doing light exercise my heart rate would jump to around 135 bpm and stay at a straight line, not dropping if I eased off and not increasing if the load increased.

In consultation with my cardiologist we stopped flecainide which seemed to help massively.

Since then I've been on 2.5mg bisoprolol twice daily, I seem to get exercise triggered Afib throughout 2024 but it has been getting steadily worse. I've attached a screenshot of my Apple Watch AFib Burden, where you can see an increase over recent months. I've had two spells of 4/5 days of persistent AF in the past fortnight. One started last Thursday after the easiest, slowest indoor bike ride I could do and I'm still in AFib as I type this.

I tried 200mg flecainide as a PIP on Sat and another 100mg an hour later which didn't seem to help. I also tried an additional 2.5mg bisoprolol on Saturday lunchtime.

In consultation with the arrhythmia nurses in Leeds we have tried various different drugs as follows:

Adizem - gave me a really bad rash

Flecainide - helped for a few years then made things much worse

Carvedilol - never really worked

Amiodarone/dronedarone - they suggested too many potential side affects/liver toxicity

I am wondering if the bisoprolol is building up in my body and perhaps making things worse, and wonder if others have seen anything like that before or am I just clutching at straws?

I'm awaiting a telephone consultation with my cardiologist, but wondered if fellow sufferers had any advice to try and reduce the ongoing episodes? I've tried the various breathing exercises suggested in the forum but they don't seem to help. I eat a very healthy diet, I cut out caffeine and any alcohol but that doesn't seem to have had any affect so did treat myself to a coffee this morning!

My consultant was reluctant to consider a third ablation when I last spoke to him about six months ago, I did read up about a hybrid/mini-maze ablation, wonder if people have any thoughts as to if this was worth investigating further?

[Responsable]

Hello, kitenski!

Your posts are always long but contain a lot of interesting data.

Your case is quite common, with your positive desire to exercise, when you should slow down a lot, because your body is sending you the signals that it is time for it. Almost all of us here are/were exercise addicts, it's nothing new... You should have stopped in the past, 6 or 7 years ago, where you had the first signs that something has drastically changed in your body. The fact is, 80% of people here try hard not to stop exercising because they were fit and intend to remain fit. All wrong! I wish somebody had told to me something like what I am telling you, where I was 55 yo and my problems just started. After 5 years, where I got 60 yo, I stopped all the exercise and continued with physical activity very carefully, avoiding utterly any strenuous exercise/activity. Walking on the even ground is quite OK to refresh your body.

If you are interested in the Mini-Maze procedure, I suggest reading the posts and comments of the member "saulger", in this forum. He had very positive experiences with it, not so long ago.

Take good care of yourself! Peter

P.S. Young footballers, who die in the playground, are good example of what can happen if a person continues with the exercise, despite the body was sending warnings. Sudden Cardiac Arrest is the final stage, which is not very difficult to reach... In the past years, there were numerous examples of it.

[kitenski in reply to Responsable]

Thakns  Responsable however all the cardiologists and all the advice I've read is to keep exercising as it's good for the heart. I gave up all my competitive running, cycling and triathlon in 2019 when first diagnosed and back right off on hills etc as my buddies disappear!!

Have you links to any research saying to cease all exercise?

[Jalia in reply to kitenski]

Excessive exercising is to be avoided but certainly not all exercise. Just be sensible.

[Hidden in reply to Jalia]

Agreed, but what is sensible in this context! 😂

[CDreamer in reply to kitenski]

Suggest you read the Haywire Heart - How too much exercise can kill you, and what you can do to protect your heart. Dr John Mandrola. It’s really about the intensity of exercise and getting what and when you exercise in proportion to what your heart can cope with now. And I know just how difficult cutting back and retraining can be if you have been an endurance athlete.

Dr John Day - The AFib Cure is also a useful read - both are cardiologists in favour of exercise at an appropriate level for protecting your heart.

[kitenski in reply to CDreamer]

Yes thanks I own and have read that first book, hence I cut down massively on what I do and the frequency. I’ll read the 2nd one!

[secondtry in reply to kitenski]

I agree with Jalia. Keep up moderate exercise, which I am sure you will find boring given your past exertions but AF trumps all hobbies - I gave up tennis & skiing.

My experience is that the heart requires moderation in all things. Due to a DVT in the leg I started brisk walks (with Nordic poles) 20 yrs ago and continued after AF diagnosis 11 years ago. My echo cardiogram last month was all fine.

Can I ask what was the reasoning behind stopping the Flecainide or was it just guesswork. I ask because I am considering slowly decreasing my 200mgs dose due to recent changing AF/Flutter pattern.

[kitenski in reply to secondtry]

Giving up skiing would be the last resort for me! But it’s not physically demanding at all, my heart rate barely goes over 100 when skiing.

If you search for posts started by me there is a load of detail on why I think flecainide made things worse, what it did to my heart rate even when walking the dog etc. if you can’t find it let me know and I’m sure I can dig out a link!

[secondtry in reply to kitenski]

Thanks Kitenski I will check your posts. Yes, giving up the slopes was a tragedy even more so as the in-laws of my son live in the Austrian Alps! However, it is possible to replace those pleasures, in my case that has been basketball, volunteering work and spiritual growth.

[kitenski in reply to secondtry]

such a shame about the skiing secondtry did you get Afib when skiing? I am on my laptop now so dug out my post on the matter:

healthunlocked.com/afassoci...

[secondtry in reply to kitenski]

Thank you, I will go through that post.

I got the dental queries out of the way today. Next in the queue is re-trying the CPAP machine to see if my mild sleep apnoea is a key factor and after that will trial a small reduction in Flecainide for say 3 months. Sods law the GP surgery has just started supplying me with 100mg tablets instead of 50mg, so will be more difficult to cut when reducing dosage slowly 😖.

Yes, got AF skiing and walking up to a mountain restaurant at around 1500m altitude. Shame not to go back but AF can't take the memories working in a nightclub in St Anton & kitchen in Lech for 2 winter seasons 🙌. Back in the 70's the season lift pass for Lech village workers was AS 30 and the accommodation & meals were free!!!

[Hidden in reply to kitenski]

What do you mean by ‘keep exercising’ above? There are always conflicting views in scientific research (as in any other field!)

[Auriculaire in reply to kitenski]

It is movement that is good for the heart not extreme exercising such as you indulged in up to being diagnosed. Endurance exercising stresses the heart causing it to enlarge and also leads to excess cortisol in the system. You are not fit if what you are doing is actually causing damage to the body's most crucial organ. You need to work on your mind to detach yourself from the compulsion to exercise and stick to walking at a moderate pace . Gardening too is good exercise . You can intersperse work with contemplating nature , listening to bird song or watching insects. Studies have shown listening to bird song is good for body. I was a Bharatanatyam dancer- this is a very cardiac intensive form of dance - and I used to fear having to give up but the wear and tear on my joints forced me to. I am less fit but happy to put my diminished energies into my garden. I needed to adjust my mind .

Re Bisoprolol. I am experimenting on giving up taking my Nebivolol. It is only a week now but I am getting LESS ectopics. Also my tinnitus has gone. Beta blockers are ototoxic.

[Popepaul]

I think that Responsable makes a valid point about avoiding sustained intense exercise. The York Cardiologists has done a video which suggests that short bursts of HIT will likely reduce AF burden. Re your concern about the build up of bisoprolol, I would not worry, you reach steady state serum levels after 4 days of usage.

[Poochmom]

if you want information about the hybrid minimaze done there in the UK look up MummyLuv. She had that one done. The minimaze that Saulger had is not a hybrid and was done in Japan. They are both similar just done differently. The one in Japan would be done as a cash option as no insurance. The hybrid one done there in the UK I believe is done by Stephen Hunter and may be able to be done on NHS but not exactly sure. MummyLuv is the expert on that one. Good Luck!

[mav7 in reply to Poochmom]

kitenski Good advice by Poochmom. If I recall, she is about your age and had a very successful procedure. Will tag her in hopes for a response. MummyLuv

[MummyLuv in reply to Poochmom]

Hello folks, yes please ask away. I didn’t have a hybrid, just mini maze but very happy to answer any questions. Out hybrid lady is four chickens. Who I can’t see, to tag at the moment

[MummyLuv in reply to MummyLuv]

Coz it’s 4chickens

[4chickens in reply to MummyLuv]

Please ask away kitenski I had a hybrid minimaze in Sheffield 18 months ago

[kitenski in reply to 4chickens]

Sorry for the slow reply  4chickens and MummyLuv had a lot on with family and worsening Afib!! if you've already written this up happy to do some searching, but my main question is what led you to have the mini maze? had you had failed ablations before, drugs not worked etc?

[4chickens in reply to kitenski]

I went for the hybrid mini maze as I’d had 5 failed ablations and the EP wanted to do another, or pace and ablate. It seemed silly to keep repeating the same thing. I originally enquired about a mini maze for my atypical flutter but mr Hunter felt a hybrid would give me a better result. I’m not totally af free but am flutter free. I was until I got pneumonia last Dec but I’m considerable better then before, now I self terminate and don’t have such awful symptoms. Medication tended to make me feel dreadful.

[kitenski in reply to 4chickens]

Thank you, I think I’m similar in that “the drugs don’t work” so considering my options, did your local nhs refer you?

[4chickens in reply to kitenski]

No they refused so I saw Mr Hunter privately for the first consultation and he then put me on his nhs list. The big downside as far as I’m concerned is that once Sheffield discharged me my local health authority have declined to pick up my care, they don’t actually refuse but as yet I’ve not seen anyone. Others have been much luckier and have got excellent care once transferred back to their local health authority.

[Dancing135]

I had the hybrid mini-maze with Mr Steven Hunter Just over a year ago now I have been in NSR since. My EF went from 40% back to normal 70%.

[kitenski in reply to Dancing135]

thanks Dancing135 , had you had any other ablations previously at all? what led you to the mini-maze which seemingly is only offered in Sheffield vs the standard ablation offered in all? other hospitals?

[Dancing135 in reply to kitenski]

Hello Kitenski, I had no previous treatment before I had the hybrid mini-maze by Mr Steve Hunter. I was already in persistent afib when it was discovered I wasn't offered any treatment only medication. I don't think my gp realise that I was in persistent afib when it was found I had bought myself a cardio watch and done my research on Google and came across the Wolf's mini-maze and research from there. I did consider going to Japan for the treatment until I came a cross mummyluv on this forum and discovered you can get the same treatment in the uk. I asked my gp for a refural and went to see Mr Hunter in Sheffield and had a full mot he was absolutely brilliant I can't thank him enough. Wishing you all the very best.

[Tapanac]

please look up mummyluv as she is very knowledgeable regarding mini maze. She has had one and seems complete success. I believe mr hunter in Sheffield

All the best

[Ppiman]

I guess many of us are sharing passage on the same boat with you. Where it's heading, who can know? Bob, here, often quotes AF begets AF, which I read also in a few studies. How symptomatic are you? Last Thursday I had AF from 11.30pm and throughout the night but, for the the first time, managed to sleep (although with help from a small dose of a mild sedative called zolpidem). My average heart rate was maybe 90'ish bpm and the palpitations weren't so bad.

Your "fixed" heart rate sounds more like atrial flutter, by the way, which I had in 2019 and which was solved with an ablation, only to bring on the current AF and ectopic issues I suffer (I am older than you at 71 now).

Steve

[kitenski in reply to Ppiman]

Morning Steve,

Whatever caused the fixed HR it's gone away since I stopped the flecainide. I have been pretty symptomatic, but then the stress of worrying about it doesn't help either! I've been backing off the bisoprolol which seems to be helping to will try and reduce that to zero and monitor the situation!

[Ppiman in reply to kitenski]

Flecainide can do some odd and unsafe things!

I have been taking a 1.25mg tablet of bisoprolol daily since February 2023 when my GP recommended it as I was due a colonoscopy and didn’t want the AF to delay it. Before that I took it only as needed. I’ve thought of stopping it as I often have a slow resting rate, but my GP is cautious as my AF is often in the 90-140 range and I cope well enough with that.

I think anxiety (often missed or dismissed by some people I’ve noticed) can cause many of the more frightening symptoms by sending the heart rate too high for comfort or, even, safety, into the 180+ bpm region. Exercise does the same with me.

Steve

[kitenski in reply to Ppiman]

I think mine doesn't go much over 120 when in AF, I'm curious to see what happens if I wean off bisoprolol. My burden has shot up on the AW so I have a few months now to compare and track what changes!!

[Auriculaire in reply to Ppiman]

I have not taken my Nebivolol for a week now . I am getting less ectopics and have gone 4 weeks without an episode of afib. Previously they were occurring at 2/3 week intervals. And my tinnitus has stopped!

[Ppiman in reply to Auriculaire]

It makes you think. These things might (well, in my case do) wax and wane so longer might be needed for certainty. I shall discuss stopping my bisoprolol when I next get the chance.

Steve I

[Auriculaire in reply to Ppiman]

I'm not counting my chickens but I feel fine without the Nebivolol. And not having the tinnitus might be a coincidence but I'm not inclined to start taking it again to see if it comes back! The big test for the afib comes tonight . The last 2 episodes have been after eating spicy food and tonight it's prawn satay .

[Tangalle]

I had mini maze surgery last year and have been in NSR for a year. Definitely worth doing some research, I too am drug sensitive and am no longer on any of the AF drugs and feel wonderful. Check out mummyluv posts.

[kkatz]

You are certainly in good hands with the Arrythmia Nurses at Leeds.What is the latest advice have they given you?

[kitenski in reply to kkatz]

No advice at the moment - they've booked me a telephone call with a consultant, date tbc.

[Jackiesmith7777]

if you read my posts as my husbands story is a bit too long to go into he is now in permanent AF he used to be like you . Yes it sounds like yours needs sorting . Are you on blood thinners ?

[kitenski in reply to Jackiesmith7777]

I’m not on blood thinners.

[doneblowedup]

Mine was a massive electrolyte deficiency - normal electrolyte mixes couldn't touch it - see my post for what has been working for me 11 months - no afib - below and article

My Post

reddit.com/r/AFIB/comments/...

Electrolyte’s imbalance role in atrial fibrillation: Pharmacological management

arrhythmia.biomedcentral.co...

Serum electrolyte concentrations and risk of atrial fibrillation: an observational and mendelian randomization study

bmcgenomics.biomedcentral.c...

Good luck

[kitenski in reply to doneblowedup]

Did you have anything show up in blood tests? My electrolyte all look good from bloods.

Bloods

[doneblowedup in reply to kitenski]

Intracellular and blood levels can be very different, for instance ive since doubled my potassium intake and it showed up as only 5.5mmo/l.

all i know is that it works for me, and several others who have tried it. I believe my biggest issue was low magnesium which orally supplementing for some people can take up to 40 weeks.

[Hidden]

If your doctor won’t consider a third ablation, inquire about a pacemaker? With my pacemaker and Watchman, I’m finally off the Afib Merry-Go-Round, including all drugs. What a relief! The drugs and I did not get along well. I’m not sure which made me feel worse, the Afib or the drugs, but I suspect the drugs. Now Afib poses no particular danger to me for which heart drugs might be necessary. It took awhile, but I have found my solution in a Watchman and a pacemaker.

[Hidden in reply to Hidden]

Con’t…prior to the pacemaker I had two ablations, nine cardioversions, and tried six different drugs. I’m so glad to be done with all that.

[dmac4646]

Must say that I was put on Dronedarone after Flec failed and it has worked well - not as good at preventing AF so I use as a PIP never last more than 24 hours and keeps HR <140 after 3 hours .

[kitenski in reply to dmac4646]

thanks dmack4646 Was that in the UK? I'll add that to things to discuss with the consultant!

[Canale]

Reading this string is like listening to what goes on in my head almost every day. It’s so interesting to hear opinions and experiences.

I am on my third bout of AF and currently taking Bisoprolol and Flecainide.

What I know for certain is that the medication works differently based on lots of factors. Especially when it comes to exercise.

For example I have a different experience when exercising based on:

- if/ when/ what I have eaten and how long before I exercise I have eaten it.

- when I take my meds before exercising.

- if I take them together.

- what else is going on in my body (I have rhinitis - which inflames with Bisoprolol

Amongst other things.

Medication and routine I am sure determines how much we can do comfortably. That said, we do need to be careful and moderate.

How people react to these medications needs research. 💯

[kitenski]

Not really much of an update, vs a watching brief. I weaned myself off bisoprolol, took my last 1.25mg a week ago on Mon 25th November.

So far, nothing has got worse, I am still getting bouts of Afib, they seem to settle perhaps quicker than when I was on biso and my HR during Afib doesn't seem any higher, so keeping a watching brief!!