Persistent atrial fibrillation

[Swimsyroke]

I have now been in persistent afib for almost 3 months and have yet to receive a consultants appointment though have received an appointment with a cardionurse on the 28th December!!!

I have been self administering (what alternative) and apart from Edoxaban 30mg which I was prescribed by my GP in February 2022, I have reached a fairly happy state of taking 2.5mg of Bisopropol with my breakfast.

Because when I was in paroxysmal afib I was always worried whether what I was eating, or how much exercising I was doing, even sneezing etc all of which could bring on Afib. This caused me permanent anxiety.

Now I generally have no anxiety, my blood pressure is down, I generally feel okay but do have breathless episodes.

I am using a Kardia single lead monitor and my heart rate normally varies from mid 70s to mid 90s. Previously I had a low heart rate of early 60s.

My question is am I doing damage to my heart if I stay like this or should I be considering some of the procedures discussed on this site i.e. ablation, mini maze etc, when I finally receive an appointment with a cardiologist.

Would welcome people's experience of living with a higher heart rate and whether it's likely that we still have a good life expectancy.

[BobD Volunteer]

Any and all treatment for AF is only about quality of life. (Apart of course from anticoagulation.) There is no difference in outcome being in NSR or AF provided that rates are well controlled. Many people find permanent AF far easier to cope with (as you have found).

As a great fan of ablation, one must, however, question the wisdom in cases such as yours . Heartt rates between 60 and 100 and considered normal and apparently hospitals do not treat rates below 120 so you are in a good place.

[Swimsyroke in reply to BobD]

A very helpful post. Thanks BobD

[NLGA in reply to BobD]

Hi BodD

Can I ask your expert knowledge I am on high beta blocker dose but after 5 months my GP took me off Amiodarone I am waiting results if a 24 hour monitor from September but my CT scan returned normal .

This last 10 days I seem to have AF or a flutter ( I was diagnosed with AF in May ) in a more regular time scale amd for longer periods but my HR is ok 55-70

I have my next cardio appointment in February as that was 6 months in from my cancelled cardioversion

But I am worried I am doing damage to my heart with these flutters

I am on Edoxaban as well

Be interested to see your views

[BobD Volunteer in reply to NLGA]

As I said, if rate is controlled there is no problem. Since you are well in normal range I would not worry a bit.

[NLGA in reply to BobD]

thanks Bob very reassuring

[NLGA in reply to BobD]

just want to bother you one more time . If the flutter is regular but the heart rate under control will it not still make the heart or part of it continue to swell

[BobD Volunteer in reply to NLGA]

Rate is the imprtant thing here not what the atrium is doing.

Think of it this way. The heart is a muscle so any part of it working hard will get larger. If you jump up and down on one leg all day every day that leg will get tired but the muscles in it will grow larger than the other. If you then stop, things will return to normal.

[NLGA in reply to BobD]

so when in my case it’s mildly dilated , in my head that’s on the way to be dangerous I kind of imagine the skin around the heart or chamber being stretched in time to breaking point

[Sacstate in reply to BobD]

hi Bob,

I was diagnosed with paroxysmal AF last year at the age of 75. In total have had about 4 AF episodes in which my heart rate was about 120 and wildly irregular. I mean WILDLY irregular, but always reverted to NSR within an hour to a few hours. Other than during those terrifying episodes, my resting HR is 50s and 60s with systolic BP usually in the teens. (I take 50 mg Flecainide twice daily and 25 mg time-release metoprolol once daily which have kept those episodes at bay now for several months.) So when I read these posts from folks with permanent or persistent AF for months or years with heart rates up to 100, I have to assume that they are not experiencing such wild irregularity as I have experienced; otherwise, I can’t imagine living with that. Is that true? Can you have AF with a steady, regular pulse albeit a rapid pulse? Thanks.

[BobD Volunteer in reply to Sacstate]

The body is an amazing thing. Permanent AF provided rate is well controlled becomes the norm and is generallty headly noticed. It is the wild switches from NSR to AF and back which are so distressing. Many people are asymptomatic and only discover that they have AF when they have a stroke. They didn't know they had it so were not taking anticoagulants! Most people with permanent constant AF have a better quality of life than those paroxysmal ones.

[Sacstate in reply to BobD]

Very informative and eye-opening information. Thanks, Bob!

[Karendeena in reply to BobD]

Hi BobD, perhaps you would give me your opinion on my paroxysmal AF please? Diagnosed in July 2020 I am highly symptomatic and live in fear of afib episodes. I have been having an episode almost every 4 months to the date which is a bit weird as I cannot find the trigger. I don't smoke or drink (not even caffeinated coffee/tea), the only thing I get is very stressed looking after my 94 year old mum who lives with me and has become very difficult! I am under a top EP who put me on apixaban and Sotalol. He increased my Sotalol to 40mg three times daily to try and keep my afib rate under control. When mine start my heart rate can go up to 150bpm and often goes on for up to 48 hours ( often slows down for 24 hours). Last episode heart rate went between 80 and 120 but my GP said panicking was increasing the rate. I don't like the speed of the HR and it leaves me wiped out afterwards but my EP would want to increase my Sotalol further if it doesn't settle which ai don't want to take. I think waiting for ablation is well over 12 months! Do you think paroxysmal afib like this will ever slow down on its own? If so I could live with that

[BobD Volunteer in reply to Karendeena]

Nothing is impossible but unlikely.

There is a saying AF begets AF in that the more you have the more you will have.

To be honest a rate of 150 is not that high for many here who go up into the 200+ area. Nor is your fequency too bad. I know that doesn't help but gives you some comparison. Stress and anxiety are common bedfellows with AF but do try not to get stressed. Your GP is right. You just make it worse for yourself. I know its not easy but whilst AF may be in your life, don't let it be all of your life.

[Karendeena in reply to BobD]

Thanks BobD really appreciated, I just get so scared of it!

[Dadtoalad23 in reply to BobD]

Hi Bob …. Did you ever have persistent AF ? I know you were successfully ablated and I’m in persistent AF but like the poster with a heart rate anywhere from 70-90 … I get symptomatic when it’s over a hundred and by that I mean I can feel it in my chest can get a little light headed if i stand to quickly. But I don’t want to be on Apixiban for ever or bisiprolol 1.25g for ever. I’m nearly 47. I want an ablation but fear it might make things worse. But I know you’ve been in NSR for years.

[Healthy65 in reply to Karendeena]

Hi I'm a newly diagnosed with a flutter and a fib I've had 10 years of very fast tachycardia with rates going to 250 plus very nasty indeed

Have been in res us so many times and ED attendances maybe 50 plus not to mention the hundreds of times I tried to cope with multiple SVTs sometimes up to 12 over say 3-4 hrs

I try Vaksalva maneuver to try to control heart rate like you put on Sotalol along with apixaban and already on blood pressure meds Lercandipine,perindopril doxazosin at max levels

I have underactive thyroid so levothyroxine used to top it also on Asthma meds pulmicort and salamol reliever.

Like you wanting to know how to effect good rate control as recent episodes a concern I sense the start of episode with etopics then sudden sinus pause 6-8 secs then jump into a flutter rate 170bmp plus run lasts 20-40 mins doing Vaksalva or carotid massage drops back into sinus rhythm then next a flutter run or an a fib run this can go on for 4-5 hours and is totally exhausting

I am struggling to breath - the asthma and Sotalol not a good match but it is where im.at.

Problem is had a left posterior fasicular block in 2020 with this going on because of covid hospital was under pressure . The ecgs at time also showed RBBB so that's not good as if both occur at the same time or close - can be very poor outcome

Now it's 2023 Sotalol has been around a while but it addresses conductivity and rhythm I was told it calms the heart but I'm not sure if gives much effect to rate control when I surge into a flutter it's really bad experience .

I would welcome any feedback from your medical care experience of other a fibbers out there

By the way when I drop down to about 110 - 90 bpm I go into a fib run caught on Kardia despite passing this info to ED cardio he's not responded yet probably due to very high no of cardiac patients attending ED , but have been in ED 3 times in last month as could not bring things under control

Any advice or guidance gratefully accepted

Healthy 65

[Desanthony in reply to Sacstate]

The way I was told to view my persistent and now permanent AF is as regular/irregular Mine is not at all wild so not as in mores code -------...----..----------............---- but ----....----.......----....----.......----....----....... and goes on like that.

[BobD Volunteer in reply to Desanthony]

I was heading to persistent before my third ablation, Approx ten years arrhythmia free (apart for ectopics) and the atrial tachycardia which was ablated in 2019.

[Jalia]

My husband has been in permanent AF for about 2 years with similar rates and was in 50s/60s previously.

I ' diagnosed' with my Kardia, he saw GP who confirmed and prescribed Rivaroxaban. He had a phone consultation with cardiologist , who had previously requested copy of Kardia reading, about 12 months ago. As he has no symptoms it was mutually agreed to just treat with anti coagulation.

[Ppiman]

It depends on your heart rate, I would say, and the advice from your GP. Anticoagulation is centrally important for stroke risk reduction, but if the rate is normal and symptoms are few, no other treatment might be necessary. I would say there are many (most?) people with persistent AF taking only warfarin or a DOAC.

Steve

[ETHEL103]

I think you sound in a great place considering.Best wishes and long may it continue.

[Ossie7]

hello Swimsyroke ,

Does you heart rate swing higher with any activity or is 90 bpm your highest ?

I was in persistent AF very recently and even on 7.5 mgs bisoprolol my heart rate went from 170 down to 48 , it was that unstable and I felt dreadful . I had a cardio version 3 weeks ago and feel amazing now back in sinus rhythm .

As Bob said , AF treatment is about quality of life so if you feel good in this rhythm , and your Rate is well controlled then maybe don’t mess with it . I have always worried about developing HF from the persistent AF , but I think each case is different .

Best wishes

[Fullofheart]

I've been in persistent AF for about a decade and mostly in that time was not medicated and heart rate high. Only last year have I been taking medication to support other interventions...cardioversions and ablations.... Long term AF does have an impact on the heart...I can testify to that....but I believe only if heart rate high and uncontrolled. It sounds like your HR is in a good range.Definitely talk to your GP and/ or cardiologist as, like others here, I'm no medic but I wouldn't be overly worried. I would be reassured by the advice offered here.

[JOY2THEWORLD49]

Hi

You have a controlled H/R and all is well what you are on.

I advise be patient and wait for your appointment.

Problems are when H/R at rest is over 100.

BpP 120s over 80s fine.

Lucky you on such a controlled H/R.

cheers JOY 73

[Healthy65]

Sorry maybe got sequence wrong see below reply to karendeena and additional points made I thought I could cut and paste same to this point in the reply chain so referencing now as not sure how to do that just yet

I hope that the common problems encountered with diagnose and the drugs suggested highlight perhaps possible better outcomes and pathways on treatment to consider with the medical advice of course

I am thinking I'm very unstable just at present with a recurring theme of multiple ED attendances and admissions to cardiac care unit

I want that to change as i realise that from March 2020 onwards had I experienced the LPFB and RBBB simultaneously then the outcome would be sudden death unless happening in the ED resus or cardiac care unit where resuscitation would be a possibility

That's the rub and exactly what the consultant cardiologist advised me in April 2022 my last long admkssion.

This is just the reality but so is my determination to live,to function and to seek the solutions available to me after all there are many aflutters and a- fibbers out there doing exactly that defying the verdict

Upwards and onwards but not to infinity just yet

Healthy 65

[Vonnegut]

Sorry to hear that. My atrial fibrillation is paroxysmal but when I entered that in my profile it was changed to persistent which mine isn’t so sorry yours is.

Moreover, yesterday I got a reading on my Kardia that said “unclassified” so I paid to have a report on what it was and (you couldn’t make it up)- it was atrial fibrillation with an explanation of what that was!! I have asked for a refund and an apology but don’t suppose I’ll get either!