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Atrial Fibrillation Support

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Hi,

I am new to this particular forum having first experienced AF at the end of November last year.

My normal resting heart rate was for many years around 50 and then on the 31st November I woke up to a heart rate around 120. Knowing nothing about AF I went to A&E and was diagnosed with AF and given 2.5mg of Bisoprolol with the aim of keeping my resting heart rate below 90.

So 5 weeks on I have seen a cardiologist who has increased my anticoagulant to 20mg to provide protection from a stroke (I have been on an anticoagulant for 2 years following an unprovoked pulmonary embolism, but only 10mg previously).

The cardiologist talked about having a cardioversion procedure soon although having researched this it looks to have an initial high success rate of 90% but also a fairly high reversion back into AF after a relatively short period of time.

Although I have been in AF constantly since it started on the 31st November the only real issue it seems to cause me is feeling tired most days. I seem to have more problems with the Bisoprolol which makes me feel a bit spaced out for about 3 or 4 hours after taking it.

So now busy reading all the various posts to try to learn and get a better understanding of AF. It looks to me from many of the posts (although I may be wrong) that once you have AF you have it for life, be it with varying periods of remission in between.

The reason I now have AF is a mystery which hopefully will become clearer over time, at the moment I put it down to age having pasted 70 last year.

Any comments/views would be gratefully received.

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45 Replies
Paulbounce profile image
Paulbounce

Hi Den.

First off welcome to the forum. Half my posts are removed at the moment but I have to (try) and answer yours.

You are taking the right walk here. Your cardio will know better than I but 20 mg of anticoagulant sounds very low ? You are right too - Bis can make you feel quite bad. It works well but can knock you for 6.

My last CV lasted two years (pretty good) but you may need to make lifestyle changes too. Even if it just lasts for a few minutes it shows other treatments may work for you.

Good luck Den - you'll get there.

Paul

baba profile image
baba in reply toPaulbounce

"but 20 mg of anticoagulant sounds very low ?"

Depends which anticoagulant is prescribed.

Paulbounce profile image
Paulbounce in reply tobaba

Fair play baba. I'm juding it on mine (dabigatran 300mg a day). Can't say I've heard of any that are 20 mg a day but I accept I could be totally wrong. It would interesting to know what the OP is taking.

Have a lovely evening.

Paul

Edit - could be this one. This is what I like about the forum - you learn something new everyday.

medicines.org.uk/EMC/medici...

baba profile image
baba in reply toPaulbounce

Probably Riveroxaban. I'm on Apixaban (Eliquis), 5 mg twice a day.

Cha275rL profile image
Cha275rL in reply toPaulbounce

I take Edoxaban 20 mg. If I weighed more than 9st 2lbs I’d be on 40 mg I was told.

in reply toPaulbounce

Hi Paulbounce, thank you for the welcome.

Yes I am on Xarelto which is also known as Rivaroxaban.

I was on 20mg when I first had a pulmonary embolism but then reduced down to 10mg after 1 year which they call a maintenance dose, now back up to 20mg.

My brother is on Edoxaban (he had Atrial Flutter) and was on 40mg a day, so each anticoagulant drug varies in strength.

It’s interesting that in A&E the doctor said as I was on Rivaroxaban I was covered in respect to a stroke, he didn’t say anything about it needing to be increased from 10 to 20mg.

When I saw my own doctor a week later to arrange for the Bisoprolol to be put on long term prescription I asked him if I was on the correct dose of Rivaroxaban at 10mg which he confirmed was correct.

It was the cardiologist that I subsequently saw who said that my Rivaroxaban was too low at 10mg and needed to be increased to 20mg and that was without any prompt from myself. So only 1 out of 3 professionals got it right - worrying times !

It’s good to hear your CV lasted for 2 years, a friend of mine has had 2 CV’s, the first lasted for 2 hours and the second lasted for 2 months.

Paulbounce profile image
Paulbounce in reply to

"So only 1 out of 3 professionals got it right - worrying times"

Indeed it Den - one says one thing and the next you see says another. Sometimes I don't think the front end knows what the rear end is doing. Research as much as you can and show them you have a real knowledge about afib - it can make the difference. Rather than being brushed under the carpet you will be taken far more seriously. That I promise. I've a bone or two to pick with my cardio when him when I next see him. He made a massive mistake IMO and I think they still are. When I was told I didn't need an anticoagulant in abib 24 hours a day - WHAT. Most people go with what their doctor tells them - I don't. I ask questions and like to get answers.

I'm off to hospital again next week. CV the following weekend - if I hadn't have pushed for anticoagulants I wouldn't be having it. If I didn't insisit on antiarrhythmic meds it wouldn't last 5 minutes anway - still might not but there's more of a chance.

If I get 6 months I'll be happy - then it's ablation time. Be armed when you see your cardio - tell him what YOU want and research well - not Facebook but good places to look. The search box here is a good start.

Good luck Den.

Paul

Dorchen profile image
Dorchen in reply toPaulbounce

Facebook has a group for AFib which has a wealth of knowledge

Paulbounce profile image
Paulbounce in reply toDorchen

Which group is it Dorchen ? TBH some of the FB groups I looked at gave so much mis-information it was frightening.

Cheers Paul

Dorchen profile image
Dorchen in reply toPaulbounce

Atrial Fibrillation support ForumMostly US folks but if you search Debbie Mcall post medical updates and all sorts of good reads. Let me know your thoughts x

Paulbounce profile image
Paulbounce in reply toDorchen

Thanks Dorchen.

I'm on the job now ;-)

Paul

in reply toPaulbounce

Hi Paul,

My understanding is they calculate a person’s risk to see if they need anticoagulant.

Not quite sure what the formula is called but apparently anyone aged over 65 would automatically come up with a score that required anticoagulants as in my case. Below 65 other factors come into play which decide whether or not you need them.

Hope all goes well with your CV and that you achieve your goal.

Paulbounce profile image
Paulbounce in reply to

Thanks Den.

Paul

baba profile image
baba in reply toPaulbounce

Good luck with the cardioversion Paul, I hope it lasts long for you.

Paulbounce profile image
Paulbounce in reply tobaba

Thanks Baba.

Paul

Hi DenBoy70, It's a lot to come to terms with isn't it? Anything that's heart related always seems particularly scary, but the good thing about AF is that, once the increased risk of stroke is taken care of, it's not that dangerous, just annoying to live with, and not least the periods of fatigue. You are unfortunate to be in permanent AF and I'm not surprised you are considering the cardioversion that's been suggested, and perhaps in time ablation if you are a suitable candidate. Do you take your Bisoprolol in the mornings? It might be better to go onto a night time regime, as I have done, as it circumvents that awful few hours that come after taking it in the mornings, when moving just seems like far too much of an effort. (But of course if you want to do this, then discuss it with your medical professional first).

No-one really knows why our hearts' electrical systems suddenly go haywire but age is definitely one of the known factors, even though young people can have this happen too. But you are in the company of lots of people like yourself who maybe have it but you only find out how many by belonging to an organisation like HU, as it's hidden in general in everyday life.

I do hope that no matter what, you can learn to live alongside this diagnosis, and not worry too much about it, and that maybe a cardioversion will provide some real relief for you.

in reply to

Hi Callendersgal,

Thank you for the kind words of encouragement. As you so rightly say anything to do with the heart is always a bit scary.

It had crossed my mind to take the Bisoprolol in the evening and thereby move the side effects to late evening/night when they will be much less of an issue. I goggled ‘taking Bisoprolol in the evening’ but didn’t get a clear answer so was aiming to ask my Cardiologist when I next see him.

I’ve used HU before for a couple of other issues and have always been amazed at how kind and helpful everybody is.

Early days for me at the moment but most certainly I will want to go down the cardioversion route and if needed and able to, the ablation route.

My younger brother had Atrial Flutter which I believe is easier to deal with then Atrial Fibrillation as its a more constant rhythm (I think). He had an ablation procedure which improved his condition greatly.

BobD profile image
BobDVolunteer in reply to

Two points there Den. Yes many people take Bisoprolol in the evening , often at the suggestion of a doctor. Unless it is twice a day or more I take all my meds before dinner around 6pm.

Secondly flutter, since it comes from the right atrium, is far easier to ablate as there is no need to punch through the septum to the left side as all veins lead to the right side.

Cardioversion is a useful tool but is not a cure. If it works and returns a person to NSR and they feel better then it can signpost other treatments such as ablation. If AF does not respond then rate control remains the option.

in reply toBobD

Hi Bob,

Thank you for the information.

I take 2.5mg of Bisoprolol once a day so will speak to my doctor about moving to an evening dose.

That’s interesting what you say about Flutter, I will pass that information onto my brother as he spent a year being treated for AFib until a paramedic who had to attend his house identified that he actually had a Flutter.

Your comment on Cardioversion was most useful in me understanding the process. If AF does not respond I assume Bisoprolol provides the rate control. Am I correct in that I would be given another medication for rhythm control ?

BobD profile image
BobDVolunteer in reply to

Yes Bisoprolol is one beta blocker but there are others such as Nebivolol or Metoprolol (anything ending in lol). There are other rate control drugs in the form of calcium channel blockers like Diltiezem (tildiem).

Rhythm control is usually by Flecainide which does need a beta blocker as well since it can cause flutter otherwise, Propafanone (what I take) or the "domestos" of rhythm control drugs, Amiodarone. This latter is a dirty drug and as one doctor told me it doen't have side effects it has effects! Amongst these are thryoid damage, lung problems and photosensitivity meaning you burn in daylight so best kept to short term usage.

in reply to

So glad you've been reassured and helped DenBoy70. There's a lot to be said for the power of people. We (mostly) aren't medical professionals but it's very reassuring to hear how other people are coping with their diagnoses. All the best to you, going forward!

secondtry profile image
secondtry

Welcome, you will find lots of quality information here. I am afraid my experience is not similar enough to pass on but a pacemaker came to mind first when I read your post - maybe worth a quick question to your cardiologist/EP at your next consult.

worriedcats profile image
worriedcats

My dad has atrial fibrillation and had stroke Christmas day (first time they've caught atrial fibrillation) he's 66 he's now on apixaban 5mg and 2.5mg bisoprolol Plus other meds

in reply toworriedcats

It's interesting to hear of your dad's experience as it often happens that it takes a long time to actually catch and diagnose atrial fibrillation. What a great pity he had to suffer a stroke to finally have his diagnosis and I hope he makes a good recovery. At least he's now protected much more against the possibility of further strokes.

worriedcats profile image
worriedcats in reply to

Thanks for the reply yes stroke unit told me that once he's on the apixaban it's very small chance he would have another stroke

He can't take the apixaban for couple more days not allowed to have it for 2 weeks after the blood clot medication he had in hospital he's on a aspirin type blood thinners till the 8th of January

Ppiman profile image
Ppiman

It's probably best to follow the cardiologist's advice and have the CV as many people do stay in NSR for a long time afterwards, I gather, despite the general negativity of the Internet. It's a surprise that bisoprolol has that effect since after a few days it reaches what's called a "steady state" in the blood stream so taking a dose shouldn't cause this to alter. Some people react differently to drugs owing to liver metabolism and clearance and similar so it might be worth asking to alter the dose or to try a different beta-blocker?

My elderly friend has had permanent AF for many years now, with no treatment except warfarin, and he eventually got over (or got used to?) the initial tiredness such that, for many years now, he's unaware that he even has AF. He's lucky to have a normal heart rate, though. Tachycardia is what makes it hard to deal with I find, even 85bpm for me being unpleasant, and 120bpm being too much.

Steve

in reply toPpiman

Hi Steve,

Yes I want to have the cardioversion even if it proves to be temporary as it’s the first step in the process.

I was going to talk to my cardiologist about the Bisoprolol with the possibility of reducing the dose. From what I can gather Bisoprolol is the go to medication so will see what he says about an alternative.

I’m lucky in respect to heart rate as I don’t seem to have difficulty with whatever the rate is. It can range anywhere from 54 when I’m asleep up to 120 If I am working hard. At rest the Bisoprolol seems to keep it well below the 90 mark which my doctor says it needs to be.

Ppiman profile image
Ppiman in reply to

My heart rate is odd in the sense that when a high rate is because of normal activities, such as exercise, then I feel fine, but when it goes up of its own accord and for no reason, it feels much like AF to me.

Steve

Singwell profile image
Singwell

My thoughts- it's early days on the Bisoprolol- eat well and keep hydrated and you'll probably find your body adjusts to it. Not everyone is suited to it but it is the first port of call in the UK and one of the less invasive of the Blockers. But there are other drugs and worth finding out about if medication is your chosen route going forward and the BBs are interfering with your QOL. Not having had cardioversion I can't comment on that part.

in reply toSingwell

Hi Singwell,

Thank you for your reply, I’m going to perceiver with the Bisoprolol for the next few weeks and see how it goes.

It is as you say the go to medication and from what I have read it has less side effects then other beta blockers.

CDreamer profile image
CDreamer

Hi Denboy and welcome.

I think we have all been where you are now and my first comment was - check out the cardiologist you saw and ensure they are a specialist in arrythmias. If not then look for an Electrophysiologist who are the experts. Cardiology has different specialities so always good to see a specialist who are usually to be found in the major cardiology centres rather than local hospitals so sometimes it means a journey but well worth it. I would also recommend a private consultation, if nothing else you get time and a sense of reassurance. Most EPs will switch you to NHS list for treatment.

As you say, AF is scary to begin with but knowledge helps and I would suggest that you look first for knowledge at AFA website and read everything you can.

Cardioversion usually is used to see if you can be cardioverted back into NSR - normal sinus rhythm - not as a permanent treatment. I’ve not had one myself as I went straight to ablation but many on here have and I am sure will explain what is involved.

There are 3 categories of AF - Paroxysmal - that which comes and goes and which tends to be a lot more symptomatic, Persistent - there all the time but can be cardioverted back to NSR and Permanent - a term used when you and your doctors agree that NSR cannot be maintained so you adjust to living in permanent AF which many, many people do with a good quality of life. If you become very symptomatic or the palpitations bother you then a procedure called Pace and Ablate is a possibility. I went for that in 2018, pacemaker was in planted in preparation for the ablation of the AV node but was so successful in keeping me in normal rhythm that I cancelled the second part of the procedure and not regretted it.

You are at the start of your journey, which may be a long one and there is no one treatment which suits all so sometimes it’s trial and error.

On drugs - suit some, not others. Bisoprolol is a Beta Blocker and many people find they cannot tolerate it so if after a few weeks you have not adjusted to the affects then do return to your GP and ask for another drug. Personally I hate them they made me feel so bad and found I my QOL was MUCH better without any drugs but I wasn’t in persistent AF with a high rate and Bisoprolol will control your heart rate but also your activity level.

As others have said, excellent forum with helpful, knowledgeable people here so don’t hesitate to ask as there is no such thing as a SSQ - seriously silly question - here. Unlike at my son’s house where I am accused of asking nothing but SSQ’s.😂😂

Best wishes CD

heartrhythmalliance.org/afa...

in reply toCDreamer

Hi CD,

Thank you for your response, lots of information to digest.

When AFIb first arose I decided to go through my private insurance as the NHS are under immense pressure at the moment and waiting lists are unreal.

Limited on choice I went to who seemed the best out of the 5 cardiologists AXA put forward. I was reasonably impressed in the initial consultation as apart from identifying the correct anticoagulant dosage he also did an ECG and a Echocardiogram and wrote to my doctor on the findings of both.

I have tried to research the cardiologist I am seeing but it’s very difficult to obtain good feedback. I have some doubts and have been looking for an EP which you referred to and which I have seen in other posts.

I live in Essex which has a major stand alone heart unit but no EP’s according to the AF website, the nearest EP’s I can find are either in London or Cambridge so a bit of a trek to either.

My thoughts at the moment are to stay with my cardiologist as he said he would do a cardioversion this month after I had been on the increased dosage of anticoagulant for 3 to 4 weeks but at the same time I would investigate potential EP’s.

Whilst a cardioversion appears to be a straight forward procedure the next step of ablation (if I need it) I would seek a consultation with a EP.

My AFib has been continuous since it started at the end of November so I assume it’s either classified as persistent or permanent.

I don’t have any trouble with palpitations and in general I wouldn’t know my heat rate is completely erratic and in AFib unless I look at my Fitbit so in this respect I count my blessings.

From feedback received I will perceive with Bisoprolol for the next few weeks and see how things go.

Take care.

TracyAdmin profile image
TracyAdminPartner

Welcome to the Forum, I am sure all our Members here will welcome you and will offer their advice based on their own experiences, however, if you would like any support or advice, contact 'A F Association' on info@afa.org.uk or visit our website heartrhythmalliance.org/afa... For a full overview of the condition, you may benefit from visiting our Patient Resources and downloading the 'A F Fact File'

booklet
in reply toTracyAdmin

Hi Tracy,

Thank you for the welcome,

I am quite overwhelmed by the kind words, support and advise I have received from the members since I initially posted.

I have started reading through the mass of information available on the website and note the details you list if I need either advice or support.

Many thanks,

momist profile image
momist

+1 for researching as much as you can. Anxiety can underlie the causes of AF, and for me the best cure for anxiety is understanding what's going on. Also, the tiredness is being caused by both the AF _and_ the bisoprolol. The good news is that your body will eventually adjust to the bisoprolol and as long as you have not been prescribed too high a dose, some of that sjhould go away after a few months. You might also get some very vivid dreams at first, but that also subsides.

in reply tomomist

Hi momist,

Yes anxiety can play it’s part.

My understanding is in AFib the heart is not functioning properly and is less efficient as it pumps less blood which causes the tiredness.

I’m only on a 2.5mg dose of Bisoprolol so hopefully my body will get used to it.

That’s interesting in that I’ve had 3 or 4 very strange dreams in the past month and didn’t realise they are linked to the medication.

captainKFF profile image
captainKFF

Hi, what is your heart rate most of the time now?

in reply tocaptainKFF

Hi,

Throughout the day it’s normally between 65 and 125 depending on what I am doing so the Bisoprolol is working. At night it now drops to 54 at its lowest.

My resting heart rate before I had AFib was between 45 and 50 and could drop down to 38 when asleep, most days it’s average throughout the day was around 65-70.

The day AFib started my heart rate peaked at 145 sitting in a chair and can now vary from one second to another.

captainKFF profile image
captainKFF in reply to

Did ask your doctor to try to put you on Flecainide to return you to nsr, usually it works.

in reply tocaptainKFF

Hi,

I assume taking Flecainide is an alternative to having cardioversion ?

captainKFF profile image
captainKFF in reply to

Yes I’m on it as an alternative to an ablation as long as it works.

Mugster profile image
Mugster

Hi Denby5 years ago I was exactly where you are .

After the first diagnosis of AF I was on Apixaban and 5mg Bisoprolol. I too felt very fatigued with the Biso but stuck with it. I was given a CV, putting me into NS R but only for two days. However this allowed for an ablation that was successful and have been in NSR for 4 years now.

I think k you are on the right track. My CV was undertaken by an arrhythmia nurse and is very straight forward. However the ablation was by an EP at St George's as it needs a lot of experience and high tec mapping to know where to attack the rogue signals. I am still on 2.5mg of Biso but it no longer has any side effects on me

Good Luck!

in reply toMugster

Hi Mugster,

Thank you for the information, I’m glad all went well for you in the end.

Could I ask a few questions if you don’t mind to try and get a better understanding.

a) Did you have paroxysmal or persistent AFib as I understand the latter is more difficult to resolve

b) Were you in NSR when you had the ablation or do you actually need to be in AFib

c) Is there a reason why you need to continue to take Bisoprolol as you have been in NSR for 4 years now.

Many thanks.

bassets profile image
bassets

Welcome to the forum 🙂

in reply tobassets

Thank you

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