[Misc] Atrial Fibrillation and medications etc - anyone able to share experiences?

[albionalba]

I've seen various AF mentions along the way but couldn't find a thread like this but I'm aware that others on NSC have experienced AF and similar problems. I am of course asking here 'on behalf of a good friend'......'they' are 70 and have had a floppy / leaky mitral valve for at least 15 years with no detriment, regularly monitored with echocardiograms, no changes to the point where cardiologist was beginning to think it might have been a very long term defect that just hadn't been picked up when younger. A couple of months ago they had a sudden shift to being much more breathless, an ECG showed AF and a much faster heart rate and an echo is finally scheduled later this month to see if it is a floppy mitral deterioration or something else. In the meantime there's been lot's of scary stroke risk talk and prescriptions of Apixaban, Bisoprolol and Furesomide collected from the pharmacy, fully read up on, but not yet started. They all sound unpleasant and worrying in terms of side effects so I wondered if anyone is prepared to share experiences with (any of) these meds (fully realising that we are all different and that this would just be expressing general opinions and not providing medical advice etc!) I know that if you read the side effects of any meds they can sound worrying but this bunch sound life changing (but hopefully life saving too). Thanks in anticipation.

 

[Algernon]

I can only give my experience of taking bisoprolol in my early 50s.
Had a time about 6-7 years ago where I was sat in my chair with a cup of tea one morning and my heart started racing and wouldn't slow back down. I went to the GPs, informed the receptionist that my heart was going mental and she suggested I go get a cup of coffee (doh!!) and wait for the GP to call me. I hadn't gone down the stairs before I was called back and hooked up to a monitor as they thought I may have had a heart attack.
I knew I hadn't yet they still blue lighted me to hospital.
Tests confirmed I hadn't, they gave me rivaroxaban (anticoagulant) and bisoprolol and was allowed to go home after about 6 hours when my heart had settled down.
I'd had a-fib occasionally previously and still get it for a second or two a few times a month.
The rivaroxaban was stopped when it ran out.
I stopped taking the bisoprolol after about six months (my own choice)
I had absolutely no side effects on either medication other than 15 minutes of anxiety after taking my first bisoprolol as I wasn't sure whether it would make me feel lightheaded. It didn't, but the anxiety did. After this first dose all others had no effect.

I did read my notes when I was in hospital which mentioned the word "ablation" and asked what it meant.
Apparently they can freeze or burn the offending part of your heart muscle to interrupt the electrical impulses and so stop the fluttering kicking off.
I didn't really fancy that.

I did find that a lifestyle change I.e. more exercise, a little bit less shite food eaten coincided with less a-fib and quite happily less gallstone attacks.

I hope your friend gets things sorted and can stop worrying. All the best to them.
For me the worst part of any illness I've had has been the worry, so far, luckily.

 

[Lifelong Supporter]

Hi there. Well I can provide some information although I believe I am a little different. I am 70 though!!!

I have Atrial Fibrillation coupled with cardiomyopathy (weakness in heart muscle). I do not currently have heart failure which your friend would appear to have given that he is being prescribed with Furosemide.

My Atrial Fibrillation really hit back in 2018 when I had occasions of rapid heart rate which rose to 160 beats a minute and I ended up in A and E in Eastbourne, Princes Royal Haywards Heath and Truro.

I am on Apixaban (blood thinner), Nebivolol (a modern alternative to the more aged Bisoprolol)(beta blocker) and Ramipril (for high Blood pressure)

The symptoms I personally suffer from are disturbed sleep and occasional bad dreams, a need to urinate more frequently, some tiredness and constipation. I have been prepared to put up with these as the tablets have stabilised me and I am able to lead a reasonably balanced lifestyle for a 70 year old. I need a buggy for golf though and I cannot stand for more than say 30 minutes without feeling increasingly poorly.

I still get AF from time to time and have a pill in the pocket to take when I get that to slow the heart down and keep me out of hospital. It is a dose of the anti-arrhythmic, Flecainide (which one does not what to take unless necessary due to the more severe side affects)

I have a yearly blood test to check that my liver and kidneys are not being adversely affected and your friend should make sure he has the same.

I hope that his helps and would be happy to discuss further.

 

[albionalba]

Thanks @Lifelong Supporter and @Algernon - that's very kind of you to share all that info. And generally reassuring. Glad to hear side effects sound reasonably tolerable alongside the benefits the meds bring. It also makes one feel quite fortunate reading of your quite scary experiences - and the fact that you've faced a longer list of meds. In many ways I'm hoping that the AF in this case is from the dodgy mitral getting worse as seems like they can be replaced fairly easily now and that might be the answer. I think it is that fear of the unknown at the outset. Lifestyle changes too for sure but it seems like Ibuprofen is a no no and they have been depending on that a bit for arthritic knees - but I'm sure that exercise has to be a crucial part of recovery. Thanks again.

 

[eastterracemike]

I was first diagnossd with AF about 3 years ago whilst about to go down to theatre for a small op.(urological). The anaesthatist refused to operate on the basis of my rapid and irregular heartbeat. I was told to go to my GP who put me on bisoprolol. This worked in easing my symptoms and I eventually had my operation which was successful.
However I didn't much like the bisprolol and I now take Adizem to releave the symptoms of AF and Apixaban to reduce the risk of stroke.
I too have hesitated with regard to ablation and would be interested to hear of anyone's experience of that procedure.
I have recently had a 48 hour monitor fitted and have an apptmt later this month to review the results.
I cannot fault the Cardiology dept in Hove for their care and support in monitoring my condition.

 

[Zeberdi]

I've seen various AF mentions along the way but couldn't find a thread like this but I'm aware that others on NSC have experienced AF and similar problems. I am of course asking here 'on behalf of a good friend'......'they' are 70 and have had a floppy / leaky mitral valve for at least 15 years with no detriment, regularly monitored with echocardiograms, no changes to the point where cardiologist was beginning to think it might have been a very long term defect that just hadn't been picked up when younger. A couple of months ago they had a sudden shift to being much more breathless, an ECG showed AF and a much faster heart rate and an echo is finally scheduled later this month to see if it is a floppy mitral deterioration or something else. In the meantime there's been lot's of scary stroke risk talk and prescriptions of Apixaban, Bisoprolol and Furesomide collected from the pharmacy, fully read up on, but not yet started. They all sound unpleasant and worrying in terms of side effects so I wondered if anyone is prepared to share experiences with (any of) these meds (fully realising that we are all different and that this would just be expressing general opinions and not providing medical advice etc!) I know that if you read the side effects of any meds they can sound worrying but this bunch sound life changing (but hopefully life saving too). Thanks in anticipation.

I’m on Furesomide as it helps with my kidneys and BP.

Absolutely no side effects other than wanting to plss a lot.

It’s a diuretic!

 

[Harry Wilson's tackle]

I've seen various AF mentions along the way but couldn't find a thread like this but I'm aware that others on NSC have experienced AF and similar problems. I am of course asking here 'on behalf of a good friend'......'they' are 70 and have had a floppy / leaky mitral valve for at least 15 years with no detriment, regularly monitored with echocardiograms, no changes to the point where cardiologist was beginning to think it might have been a very long term defect that just hadn't been picked up when younger. A couple of months ago they had a sudden shift to being much more breathless, an ECG showed AF and a much faster heart rate and an echo is finally scheduled later this month to see if it is a floppy mitral deterioration or something else. In the meantime there's been lot's of scary stroke risk talk and prescriptions of Apixaban, Bisoprolol and Furesomide collected from the pharmacy, fully read up on, but not yet started. They all sound unpleasant and worrying in terms of side effects so I wondered if anyone is prepared to share experiences with (any of) these meds (fully realising that we are all different and that this would just be expressing general opinions and not providing medical advice etc!) I know that if you read the side effects of any meds they can sound worrying but this bunch sound life changing (but hopefully life saving too). Thanks in anticipation.

First, trust the cardiologist. They are really smart and know all the ins and outs.
If I can put it simply, AF becomes symptomatic when the rhythm in the ventricles gets too fast or slow.
I once met a bloke who had been in continuous AF for two years. He was fine.
In AF only a few electrical waves manage to get through the AV node into the ventricles.
The AV node is a high frequency filter and brilliantly regulates ventricular rate in AF.
In AF the atria are experiencing an electrical storm.

AF can become a problem if too few or two many impulses get through the AV node and the ventricles follow too slowly or fast. This may happen over time as the AF affects the physical structure of heart tissue.
This is known as maladaptive changes in the heart, and despite occurring slowly, the effects can manifest suddenly. But this is not a big deal really.

The ventricles pump blood around the body. The atria simply pass blood to the ventricles.

So the rate of beating of ventricles can be controlled by drugs (to regularize ventricular rate) or by electrical conversion of the AF to normal rhythm.

The other irksome bugger is thrombosis. The fibrillating atria can get blood clots in the folds of the atria in the noncirculating blood there, which can become 'stagnant' in the crevices of the fibrillating atria. This is why conversion of AF (usually done electrically) is preceded by a week or so of anticoagulant drugs. This is so the heart, suddenly beating normally after defibrillation, doesn't propel a clot into the aorta and up the carotid to the brain and cause a stroke. The cardiologists are brilliant at preventing this with anticoagulants and imaging.

In the long term untreated AF can lead to enlargement of atrial or ventricles (hypertrophy) that can affect the ability of the heart to pump, causing cardiac output 'failure'; dizziness, ankle puffiness, soggy lungs, shortness of breath.

Managing the ventricular rate or rhythm with drugs or electrical defibrillation followed by drugs will reverse all the 'heart failure' changes over time.

Ironically I was on a call with a leading heart failure doctor today, a colleague on the PhD committee of a young engineer I am supervising who is writing algorithms to detect heart failure changes in the ECG. I am a scientist not a medic but if you have any more Qs please PM me. If I don't know the answer I can find out things.

 

[lawros left foot]

I've seen various AF mentions along the way but couldn't find a thread like this but I'm aware that others on NSC have experienced AF and similar problems. I am of course asking here 'on behalf of a good friend'......'they' are 70 and have had a floppy / leaky mitral valve for at least 15 years with no detriment, regularly monitored with echocardiograms, no changes to the point where cardiologist was beginning to think it might have been a very long term defect that just hadn't been picked up when younger. A couple of months ago they had a sudden shift to being much more breathless, an ECG showed AF and a much faster heart rate and an echo is finally scheduled later this month to see if it is a floppy mitral deterioration or something else. In the meantime there's been lot's of scary stroke risk talk and prescriptions of Apixaban, Bisoprolol and Furesomide collected from the pharmacy, fully read up on, but not yet started. They all sound unpleasant and worrying in terms of side effects so I wondered if anyone is prepared to share experiences with (any of) these meds (fully realising that we are all different and that this would just be expressing general opinions and not providing medical advice etc!) I know that if you read the side effects of any meds they can sound worrying but this bunch sound life changing (but hopefully life saving too). Thanks in anticipation.

@Harry Wilson's tackle is the guy to talk to on here.
He is some kind of medical expert in cardiac matters,although I think now he teaches at University.
I know when I had cardiac problems he was very knowledgeable in all aspects of my particular condition.

EDIT:
Ignore this post, the man himself as answered in the post above mine.

 

[albionalba]

Absolutely no side effects other than wanting to plss a lot.

Thanks - does that mean piss a lot all day or just for a couple of hours after taking (thinking about manageability of this at work etc)?

 

[albionalba]

Thanks for all that info @Harry Wilson's tackle (with endorsement from @lawros left foot ) - I will PM you!

ankle puffiness, soggy lungs, shortness of breath.

These symptoms all very familiar (suddenly).

First, trust the cardiologist. They are really smart and know all the ins and outs.

It's taken a while to get attention from the cardiologist out of appointment sequence via GP etc but they seemed so concerned about the situation once involved and accelerated everything (that has spooked the patient a bit but think in good hands now provided not too much gap between echo and follow up consultation)

Thanks again.

 

[Nitram]

I was first alerted to my AF condition nearly two years ago shortly after purchasing an Applewatch which alerted me to the condition.
In retrospect I probably had the condition for a while. I decided to give up alcohol and caffeine as that often made my heart race.
The doctors put me on Edoxaban, blood thinner and Bisoprolol to regulate the heart rate.
My Apple Watch regulates my AF episodes, I’ve had episodes without realising, when asleep and sometimes when awake.
Until recently the medication controlled the episodes but then I had a few in a couple of weeks. I spoke to my consultant and have decided to have the ablation procedure and I am on a waiting list.
Definitely recommend getting an Apple Watch as a monitoring device, I’ve found it useful in storing dates and frequency of episodes of AF to relay to the professionals.

 

[FamilyGuy]

I had a very minor stroke in Feb 83, followed quickly by emergency bowel surgery (completely unconnected). I'm 72 and retired.

I'm told by the great people in Reigate Hospital that the stroke was caused by blood clots, which were caused by AF. They discovered the AF - and an accelerated pulse rate - during the bowel op.

I too am on apixaban thinners, bisoprolol , atorvastatin (statins), digoxin (to slow the heart down I think) with tolerable side effects (affects?) as outlined by others above. I did have some horrible halucinations (sp?) from the beta blockers so in conversation with my GP I have reduced my intake which has stopped them.

I am "in AF" at times according to my cardiologist, but he's not too worried and so neither am I.

I'm also on some pretty big-time steroids to address /correct occular myesthaemia as a result of the stroke (which thankfully is the only long-term side effect of the stroke itself).

I too would emphasise "trust the cardio guys" (i would also strongly recommend listening to the Stroke team and the wonderful Stroke Association, but that's a different topic.)

I do get a bit short winded at times but a quick rest with my feet up sorts that. I still play golf twice a week in the good weather - once a week when its less-clement. I do a lot of gardening, I walk most days, I'm a keen wood-butcher and have made several benches, chairs, tables, plant troughs etc, all from "reclaimed wood" and all of which require a level of activity/exercise to manhandle.

My life has been changed (a bit), but after a dire start to 2023 I'm very pleased to say that I'm OK. I don't let AF bother me (although I have started to carry asprin with me), I know it's there, it's part of me. It does not control me but I am constantly aware of it.

Happy to talk further about any of the above.
Blokes should talk more about things like this.

 

[albionalba]

Thanks @FamilyGuy - all these other cases like yours makes me realise that many others facing much worse and more worrying, so probably need to get a grip on worries over meds! Glad to hear that things have stabilised. With all your woodwork do you worry about cuts / bleeding etc as that is one thing that worried me being a bit of a DIYer that always manages to get a cut or graze somehow. You are right about more men talking about this stuff I think and so many times I've seen NSC be positive in that way.

 

[Diablo]

Wow seems a lot have AF.
I was diagnosed approx two years ago. Coupled with high blood pressure. Have lost weight and now take no blood pressure pills. Bisoprolol reduced to 1.25mg from 2.5mg.Still on 5mg Apixaban. Also Tamsulosin which is brilliant at stopping need to Pee 3-4 times at night. I`m 68.

 

[Zeberdi]

Thanks - does that mean piss a lot all day or just for a couple of hours after taking (thinking about manageability of this at work etc)?

Excellent question.

Just for a few hours every 30 mins after taking it - I tend to take it first thing in the morning (6am) but later in the day if I’m intending to distance travel in the morning. By the time I go to work, around 9-9.30, I’m done!

 

[Harry Wilson's tackle]

I had a very minor stroke in Feb 83, followed quickly by emergency bowel surgery (completely unconnected). I'm 72 and retired.

I'm told by the great people in Reigate Hospital that the stroke was caused by blood clots, which were caused by AF. They discovered the AF - and an accelerated pulse rate - during the bowel op.

I too am on apixaban thinners, bisoprolol , atorvastatin (statins), digoxin (to slow the heart down I think) with tolerable side effects (affects?) as outlined by others above. I did have some horrible halucinations (sp?) from the beta blockers so in conversation with my GP I have reduced my intake which has stopped them.

I am "in AF" at times according to my cardiologist, but he's not too worried and so neither am I.

I'm also on some pretty big-time steroids to address /correct occular myesthaemia as a result of the stroke (which thankfully is the only long-term side effect of the stroke itself).

I too would emphasise "trust the cardio guys" (i would also strongly recommend listening to the Stroke team and the wonderful Stroke Association, but that's a different topic.)

I do get a bit short winded at times but a quick rest with my feet up sorts that. I still play golf twice a week in the good weather - once a week when its less-clement. I do a lot of gardening, I walk most days, I'm a keen wood-butcher and have made several benches, chairs, tables, plant troughs etc, all from "reclaimed wood" and all of which require a level of activity/exercise to manhandle.

My life has been changed (a bit), but after a dire start to 2023 I'm very pleased to say that I'm OK. I don't let AF bother me (although I have started to carry asprin with me), I know it's there, it's part of me. It does not control me but I am constantly aware of it.

Happy to talk further about any of the above.
Blokes should talk more about things like this.

I'm sorry about the stroke. The fact that when AF stops a sudden normal string heartbeat in the atria can dislodge 'stasis thrombi' (clots in the atrial folds) was not well recognized.

These days the medicos are hot on anticoagulation, before electrical cardioversion, and after.

Likewise after my knee replacement I was injecting myself in the abdomen with anticoagulants for 2 weeks so that clots would not form in the knee spaces and then 'escape' into my circulation.

You are right, people should talk more about all this (its not just blokes).

Best wishes

 

[albionalba]

Just for a few hours every 30 mins after taking it

Thanks! That's what I was hoping - I will go for the 6am thing too I think!

 

[Bob!]

I once met a bloke who had been in continuous AF for two years. He was fine.

Was that me?

Finally had a Catheter Ablation in December last year. Everything was great!
Saw cardiologist at end of May, came off the Bisoprolol as everything was going well.

2 weeks ago I got the same symptoms, and then one night I got the racing heart, so put myself back on Bisoprolol and emailed cardiologist.

Advised to download the app Fibricheck yesterday, and to use this 3 times a day for a week, AF was confirmed last night.

I'm in Menorca currently and for the next few weeks so hopefully will be able to see the CTC team when I get back..

 

[FamilyGuy]

Thanks @FamilyGuy - all these other cases like yours makes me realise that many others facing much worse and more worrying, so probably need to get a grip on worries over meds! Glad to hear that things have stabilised. With all your woodwork do you worry about cuts / bleeding etc as that is one thing that worried me being a bit of a DIYer that always manages to get a cut or graze somehow. You are right about more men talking about this stuff I think and so many times I've seen NSC be positive in that way.

Yes, minor cuts are an issue when working/gardening and there's not much to do about it other than always carry some plasters (including big hospital-type ones) when its appropriate to do so, and make sure there are always some within reach. My situation is accentuated by having very thin/dry skin on my arms - a legacy from my late mother - that can "tear" and bleed at the most inconvenient times if I knock it or rub against things.
The skin on my arms almost always have painless purple patches on them where I've knocked them, or they are healing.

As far as I'm aware the thin skin/purple patches/bleeding thing has nothing to do with AF, but the thinners make any bleeding look worse. than it generally is.

Hey ho!

 

[FamilyGuy]

Yes, minor cuts are an issue when working/gardening and there's not much to do about it other than always carry some plasters (including big hospital-type ones) when its appropriate to do so, and make sure there are always some within reach. My situation is accentuated by having very thin/dry skin on my arms - a legacy from my late mother - that can "tear" and bleed at the most inconvenient times if I knock it or rub against things.
The skin on my arms almost always have painless purple patches on them where I've knocked them, or they are healing.

As far as I'm aware the thin skin/purple patches/bleeding thing has nothing to do with AF, but the thinners make any bleeding look worse. than it generally is.

Hey ho!

also, if you're away on a golf trip, make sure you tell your mates what might happen so that they are prepared for it - and can help / not faint if anything happens