Persistent AF

[Gillybean123]

Hi everyone, I have been to see my cardiologist today. Had all the usual tests done he asked me how I was feeling I said I felt really well. He then told me I was no longer in Paroxysmal AF and I was in Persistent AF. How can they tell? I have got to have an echocardiogram done and a machine fitted to check heart rate, they want to stop my flecanide and add another tablet. He said flecanide slows your heart rate down and I need something to regulate it. Can anyone explain feeling very bemused by it all. Have got to stay on my verapamil.

[BobD Volunteer]

Obviously the reults show that you are in AF either all the time or at least the majority of the time. This is persistent. Permanent may sound the same but medically that is merely an agreement between doctor and patient that atempts to obtain NSR are futile.

Since AF is accepted then a drug like flecainide which is a rhythm control drug is no longer appropriate and rate control will be the way forward.

[Gillybean123 in reply to BobD]

Oh thank you, you have just answered what has been going on in my mind. I just needed it in black and white. Thanks again why have they told me I don’t need to go for annual checks any more. Just only to get onto them if anything wrong?

[Thomas45 in reply to Gillybean123]

I don't have annual checks any more as I am in permanent, though asymptomatic, AF. Basically, as BobD says I've agreed with the medics that my persistent AF is not going to change back to normal sinus rhythm nor paroxysmal AF. Because it's persistent it will be persistent in a years time, so no need for an annual check-up.Once you're happy with the medication to reduce you heart rate, if needed, you only need medical assistance if anything changes

It's been 7+ years since my AF became persistent. I can't take beta blockers, which reduce heart rate, because they exacerbate my asthma, and also cause urticaria. Calcium channel blockers also reduce heart rate, but as yet my own heart rate is within the normal range of 60-100., while resting.

The only medication I have for AF is an anticoagulant, Warfarin being my choice.

[mjames1]

Maybe this will help:

Paroxysmal afib -- afib that comes and goes, but never lasts more than 6 days at any one time.

Persistent afib -- If you've had afib that is continuous for 7 days or more.

Longstanding persistent afib -- If you've had afib that has continuous for one year or more.

Permanent afib -- Longstanding persistent afib that you and your doctor have decided not to treat.

Jim

[Gillybean123 in reply to mjames1]

Hi there, I didn’t know that I was in AF. So for them to say I’m in persistent AF really through me. I must have got used to how I feel or something.

[Omniscient1 in reply to Gillybean123]

"I didn't know" .... A mixed blessing if ever there was one. I'm in AF all the time but can't tell

[Fullofheart in reply to Gillybean123]

A lot of people experience this when in persistent as you don't feel it going "in and out" any more, it's just "in".

[Gillybean123 in reply to Gillybean123]

Hi there, so what is worse going in and out of AF or staying in AF all the time. ?

[mjames1]

I would ask the cardiologist why they are classifying you as persistent a fib. Did they put a Holter monitor on you?

I also don't understand the Cardiologist comment about flecainide.

At least in the United States, these types of decisions are made by electrophysiologists (ep's) and not general Cardiologists.

You may want to consider getting a second opinion from one.

Jim

[Gillybean123 in reply to mjames1]

Hi, I have got to have an echocardiogram done and they are fitting me with something, it sounded like space!!! Something. But it is going to monitor my heart rate. But they are sending letters out to my gp and a copy to myself. So I’m thinking wait and see what these say and then go forward.

[JOY2THEWORLD49 in reply to Gillybean123]

Hi

Whilst focusing on me and my meds I had 3 x 24-hr heart monitors in year 2021. 1st with med I was taking. Found to be rapid h/rate day. Med changed another BB Beta Blocker still not controlling my H/Rate.

Finally I went sideways to a private cardiologist. He put in on CCB Diltiazem and BB Bisoprolol was reduced down to 2.5.

2 years later I take these meds as it certainly controls my Day H/Rate. Lost 6kg over last year and now H/Rate day is 60s.

I was able to have the last 2 operations. Anaesthetists warn "we won't do the operation" if your H/Rate is over 100.

Hope the Right Shoulder - rotor cuff operation is the last.

cheri jOY. 75. (NZ)

[bean_counter27]

Flecainide is for rhythm control I.e. to try keep you in NSR. If it is no longer working then no use taking. Sounds like focus will now be on rate control I.e. stopping your heart rate going too high so heart pumps efficiently as possible in AF

[Singwell]

First thing - you feel really well - hold on to that! Apparently pur bodies adapt better to being in persistent than paroxysmal, so it may not be a bad thing. Re Flecainide I did thing it had a track record to increase HR whilst regulating rhythm. From what I know (my brother is in persistent AF) they just like to keep your rate down in persistent and in know some of the older members here might also have a pacemaker. See what others say.

[KathleenV]

Hello GillybeanI was also diagnosed with permenant, persistent A Fib and the cardiologist advised me to accept it. It was good advice and I did accept it. My daughter said at the time that it was good to know and she was right too. People have good intentions and it's easy for them to give an explanation for tiredness and/or breathlessness. I have heard remarks in the past like 'You need to need to go to the gym/do more/do it all faster' You know yourself best. Take care of yourself. Rest when you feel tired. Listen to what your body is trying to tell you. Live in the moment. Life is good so enjoy it.

Kathleen

[Gillybean123 in reply to KathleenV]

Hi there, when I had a bout of AF I knew I had got it. It knocked me about. When they asked how I was yesterday I felt really well I have for a while. So if I am in persistent AF do you not realise you have it? Thanks Gill

[CDreamer in reply to Gillybean123]

Seems as though not - many people have never known they are in AF & it’s only been picked up when they have pulse check or pre-op exam.

I was VERY pleased to get off Flec - which had also stopped being effective anyway.

[pip_pip]

The machine you're having fitted is the holter which over the time it is fitted will measure the topsy turvey of your heart rhythm.

The echo will show IF there is any anomolies in the heart, to be treated.

Is your cardiologist an electro- physiologist, specialising in heart rhythm ?

In the early days (25 years ago) I was treated by a consultant cardiologist for a long time which got me nowhere, before I was put over to an EP which changed everything for the better for me.

Be aware of everything going on and be knowledgeable of your meds and any procedures.. What they are and why. Knowledge is power when involved with the medics. it seems that you will be involved with for a while. Fore-armed is the way to go.

Best to you

Phil

[JOY2THEWORLD49]

Hi

Yes I take CCB Diltiazem and your Ver............... is in the same family of meds.

Your cardiologist is looking after you. Abnormal structural hearts shouldn't have flecainide.

I am persistent as well. Cut out the rapid then passed symptoms disappear like uncontrolled heart rate rapid causing sweating and lost of energy.

I may have had AF before stroke but diagnosed AF always been persistent.

cheri JOY. 75. (NZ)

[DiyChas]

What what my cardiologist indicates, heart beat is electrical and a drug like bisoprolol will regulate it (and lower it).

[JayDJ]

I'm now in persistent and I'm certainly aware of it, I feel it as I type - happy days but it is what it is.

[Gillybean123 in reply to JayDJ]

Hi there, I visited my cardiologist last Monday. He said on the plus side you won’t have to come and have an annual check up. I don’t understand why. Have you been put on any medication. They have said I have got to stop my flecanide and take bisoprolol along with my verapamil. I can’t take that or digoxin. Then they said amiodarone which I don’t want to take. I am waiting for an echocardiogram and a monitor to be fitted. When you say you don’t feel well what are your symptoms? Regards

[JayDJ in reply to Gillybean123]

Hi Gilly, A lot as you would imagine depends on what my pulse rate is and also the force that it is emitting.

Tonight as I write it is slightly erratic but not overly noticable, so I guess that it is low key. On other occasions I feel it and it's almost as if I'm waiting for a beat to kick in in a rhythmic sense. As for my Cardiologist I have emailed his secretary and telephoned twice but they don't get back. I get a 5 minute telephone slot about twice a year, unless of course they cancel and then I go to the back of the queue and wait another 6 months.

I was told on July 13th 2023 that as Dronderone wasn't doing its job any longer, to stay on it for the time being!

Anyway 6 months later and he hadn't gotten back to me, by which time I was in permanent Afib I contacted my GP and he got through to him. The message being - yes to stop the Dronderone and that was it.

Basically I'm on Bisoprolol 1.25 mg and Edoxaban and feeling that I'm very much on my own. As such I guess that my symptoms are manageable during the day but often wake up with my heart racing erratically first thing in the morning. Sorry for the long reply.

P.S. I found Nebivolol was a good alternative to Bisoprolol.

[Gillybean123 in reply to JayDJ]

Hi there. I am sitting here contemplating calling surgery again. But will give them a little longer as it has only been 8 days since my appointment. They just seem to leave you waiting on a limb. I know nhs are busy but there must be some priority somewhere. We are not supposed to mess with our meds but if they say just stop and they don’t give you an alternative what do we do next. I think you should see your gp again with some notes and tell them you are not happy. I think from my appointment last week that it is in the hands of my gp now. I had a gp 2 years ago when I was going through a bad episode and I asked her about my meds being changed and she couldn’t do it. I am also waiting for a steroid injection for my hip I have called theee times now. I know they have clinics but I am really struggling to walk my dogs but we carry on. Well I dearly hope you have a better day. I will mention Nebivolol.