How can I manage persistent AF

[Sorre1]

I am in UK and have had paroxysmal AF for a few years and was prescribed Flecainide and Bisoprolol but also had a Pacemaker fitted in July 2020 because of a low resting heart rate (normally 50 but loop recorder showed some drop to mid 30s overnight).

Any periods of AF I’ve had up to now have been 5/6 hours but last year they got longer and more frequent with one last September lasting 14 hours.

I had a telephone appt with Cardiologist in October and he changed my meds to 80mg Sotolol twice a day (I’m also on Edoxaban). He said he would review in 4 months so that’s due early February.

After an initial few weeks getting used to the drug I thought I had the AF under control but Saturday afternoon I went into AF and it’s always very uncomfortable (like the proverbial box of frogs).

Managed to get some sleep thinking it would revert to normal rhythm overnight but it didn’t.

I did NHS 111 and was advised to go to A&E yesterday morning and was there until tea time in Same Day Emergency Care unit.

Still in AF when discharged with advice to increase the evening Sotolol to 180 (am dose to remain at 80). Pulse rate still high but not excessively so.

So I’m still in Af over 40 hours since it started and trying not to get stressed as I have to wait now for the review with Cardiologist.

I assume that this is what’s called ‘permanent’ AF and as it’s new to me I’m looking for advice on how to manage it while awaiting contact from cardiologist. Do I try to continue with normal activities or rest more (I’m 73).

Any advice or reflections welcome

Thanks

[BobD Volunteer]

To be correct paroxysmal AF reverts on its own. Persistent lasts longer than seven days and or needs intervention either chemical or electrical. Permanent is not a medical term it is an agreement between patient and doctors that any future attempt to obtain NSR is futile and rate control only (plus antcioagulation of course ) is the way forward.

AF may be in your life but don't make it all of your life. Listen to your body and make your life a full one. (And stay well hydrated)

[Sorre1 in reply to BobD]

Thanks Bob. It’s always reverted on its own before now, apart from one of the first episodes when my pulse rate was 160 and I had some intravenous drugs (Bisoprolol?) to bring it down. That was before I saw a cardiologist and was prescribed Bisoprolol.

I’m trying my best to carry on as normal and I’m sure I will learn how to manage it - just feels very odd at present.

Thanks for your advice 👍🏻

[Frances123]

I can understand how when your Afib seems to be changing that it can be stressful and that in turn can exacerbate the condition. I am 70, have had Afib for 18years and I too am paroxysmal. My episodes can last between 2.5 & 54 hours. Average though is about 12-18 hours and I have always self reverted. The 54 was a one off. The only real difference over the 18 years has been diminishing length of time between episodes. Use to be months and months but for last couple of years about every 5 weeks. I appreciate I am still one of the lucky ones there. I am also very symptomatic. I try to carry on as normal during episodes but I don’t push myself or overdo it, just normal things around the house. Listen to your body. I find being distracted does help.

I do hope you revert very soon and your review with the cardiologist goes well.

[Sorre1 in reply to Frances123]

Thanks Frances, it is a comfort to know someone else is in a similar position and coping with it. It’s been 64 hours now and I’m trying to distract myself. Will take the dog to the park later as I know it’s important not to sit and worry.

[Clarrie]

I am on Sotalol 120mg twice a day and understand the maximum dose is 320mg a day. I also have a pacemaker as I was passing out on reverting to NSR. I have attacks of AF every 2-3 days lasting between 24-48 hours.

[Sorre1 in reply to Clarrie]

Thanks Clarrie. It’s hard trusting a little bit of machinery but I’ve had mine since July 2020 (in the height of the first lockdown which was a bit scary 😳). Good luck with yours 👍🏻

[Clarrie in reply to Sorre1]

I also had mine in the lockdown in June 2020. Next step for me is ablate but not sure I want to be reliant on the pacemaker.

[Sorre1 in reply to Clarrie]

Same here. Last conversation with consultant said choice was different meds (Sotolol) or ablation. I know it doesn’t always work but I will go for it.

[FitnessGotFibbed]

Some experience with AF, flecainide, and low HR here. Have had AF convert to AFL due to the Flecainide and become very sticky (>36 hrs). Could share my tricks for converting AF and AFL and for keeping normal rhythm if you're still searching for a solution. Do you have an ECG to check whether you're currently in AF or AFL?

[Sorre1 in reply to FitnessGotFibbed]

Thanks. Not sure what AFL is. Had ECG at hospital but no further info, just know that I’m still in irregular heart rhythm after over 3 days.

Tips and tricks would be helpful thanks.

[FitnessGotFibbed in reply to Sorre1]

Atrial flutter - pulse is regular but chest feels like wild frogs. AF - irregular pulse plus the frogs. Either way, I stop my flecainide and relax as much as possible for as long as possible. I restart flecainide once I'm back in NSR. I do deep breathing before bed to increase blood oxygen to the verge of hyperventilating, then relax awhile before laying down. Doc prescribed alprazolam gives me decent sleep, plus it's a bit vagolytic. Usually I wake up in NSR. If not, I relax, laying down. Sometimes for a couple hours. And sometimes this does the trick. For me, Flecainide converts me to AFL if I'm in AF. But it does work well to prevent the onset of AF. Best!

[LPE44]

I had my first ablation almost 4 years ago - long story you can read on my profile. Over the past years, I was still exhausted easily, sleeping 12 hours a day and generally ok but not great by any means.

Anyway, I met with an EP yesterday as my pacemaker readings say I've been Afib on and off for months - last reading said it had been over a week. I am now back on Eliquis in prep for a second ablation. For many people, an ablation fixes Afib but not everyone. I guess it just depends on if you can tolerate the meds. For me, they didn't really help but then neither did the first ablation.

Another thing to have checked out is sleep apnea - even if you don't snore. This can adversely affect your heart. The EP put in a referral for me to do one as a secondary cause for my exhaustion and excessive sleep.

[Sorre1 in reply to LPE44]

don’t think sleep apnea is an issue for me. Usually get between 7-8 hours a night. Husband is light sleeper and he hasn’t noticed anything.

Thanks for reply.

[LPE44 in reply to Sorre1]

You may not be snoring - just have poor oxygenation when you sleep. I didn't realize it was a thing but my doctor says it is pretty common. ~shrugs~

[JOY2THEWORLD49]

Hi

I'm 74 in NZ.

I would say you are Persistent AF. Over 100 H.R would be rapid and you need CONTROL.

My night average rate is 47 average and it stays through all the changes in meds Metroptol, Bisoprolol and now CCB Calcium Channel Blocker.

Have a 24 hr monitor. It tlls lot. And ECHO Scan.

Patience to work things out.

A CCB which I have now blocks out Calcium from entering the heart. It controls H/R and Rythmn and BP. The BB blocks adrenaline. It doesm't work for me.

Try to relax as you work through issues.

Cheri. JOY. 74. (NZ)

[Sorre1 in reply to JOY2THEWORLD49]

Thanks Joy, yes, it looks like it’s now ‘persistent’ as it’s been irregular for 9 days now. Wasn’t too bad yesterday but I could really feel it this morning. I have an Oximeter but don’t think it registers with AF as the results are all over the place. I was thinking about a Kardia (?) but it says it’s not suitable with a Pacemaker.

Have an appt with my GP tomorrow so hope I can talk it through with her.

[JOY2THEWORLD49 in reply to Sorre1]

Hi

Many who started with Trach..... and have become persistent say it is better being persistent as you don't get the EVENTS as HORRID TIMES.

I've never known any different.

Just get a BP Monitor with Heart Rate and Memory. I have a MicroLife. I took

it to Dr and nurse checked it out. Perfect and much more comfortable than their old one.

My Dr checks my H/R herself physically.

The ECG gives you a H/R but no talking or leave 15 minutes before you have it at rest.

Take a notebook with you to appointment and already show your questions. You could take another person with you.

cheers JOY. 74. (NZ)