Anyone in permanent afib long term and feeling fine?

[MalJam]

I am 70 and now in permanent afib after many years and many different aggravating unsuccessful drama drugs to stay out. After a long discussion with my EP we have decided to stop all afib conversion drugs and just stay on my blood thinner Xarelto for life. I really feel fine and have no symptoms or problems other then excepting the fact I am in permanent afib with a heart rate of 90 bpm with no turning back. Has anyone else been in permanent afib without developing problems over the years? Thanks

[Rainfern]

Hi Maljam, I have persistent AF and my understanding is that “permanent” AF refers to the decision made with medics to stop further active treatment. So at the moment although I’m awaiting further treatment (catheter ablation) I have no idea if my symptoms will ever change or if one day my AF will be classed as permanent. What I do know is that my chances of living a long and trouble free life are greatly increased by a half hour walk every day, avoiding highly processed foods and sugar, relaxation/meditation and a good night’s sleep.

The longer term risks of being in AF over a long period of time are fairly well documented - so we have a higher risk of heart failure, dementia, stroke etc. And though that scares the socks off me and I had to pick myself up off the floor when a recent CV failed to keep me in NSR (didn’t know I could be such a drama queen!) I know that in truth the biggest risk to my health is simply, like you, reaching the age of 70!

Wishing you luck and will be interested to read what others have to say about permanent AF experiences.

[MalJam in reply to Rainfern]

Thanks

[MalJam in reply to Rainfern]

Thanks for sharing.

[mav7]

Thanks for sharing your story  MalJam

I have been in persistent afib for 2 years. It has been controlled by Metoprolol .50g with an avg heart rate between 70-90. Recent echo showed no issues, I have elected not to have an ablation or minimaze due to my age (77) and control of afib. At this time at least.

May want to consult with your doctor to wear a medical device heart monitor at least annually and periodic echocardiograms.

Hopefully,  jeanjeannie50 will see this post and comment. Take her advice about not worrying and not permitting permanent afib to control your life.

[Threecats]

Hi Maljam

I’m not a long-term Afiber as I’ve only been in persistent since Feb this year but I’ve no plans to change anything anytime soon. As I’ve mentioned in other posts, I am much more relaxed in continuous AF than I ever was when it was paroxysmal, where I was constantly wondering when the next episode would strike.

My AF rate can get a bit fast, so after some experimentation with different drugs, my EP has now got me on a low dose of Verapamil which seems to be doing the trick of keeping my heart rate within 60 - 90 range depending on what I’m doing. On that front I’m able to do all I want to do. which recently, has included cutting my hedges ( I have a lot of hedges😄)and fixing new handrails to my concrete slabs, so I consider myself very lucky that I’m not debilitated by AF as some poor souls are.

Although I’m “only” 58 I’m content just to go with the AF flow, relax and enjoy life but, as I say, I do realise how lucky I am that “my” AF is not an intrusive companion 😄

[MalJam in reply to Threecats]

Thanks

[mbheart]

yes, that’s me. I almost feel bad to say here that I never have symptoms and forget I have afib. I take Pradaxa 2x a day snd Bisoprolol 10 mg each day.

[opal11uk in reply to mbheart]

Same as me!

[mbheart]

gee, reading the comments- maybe I should be worried. But wait, my mom lived to 97 with permanent afib. Just took meds forever and she passed peacefully in her sleep and was still driving up until one month before she passed. Her death certificate indicated she died of heart failure. It’s interesting how afib and PAF can affect people differently but I was told 6 years ago when I was diagnosed that I was not a candidate for ablation and cardioversion didn’t work so I’m on meds for life it seems

[En85 in reply to mbheart]

how many years was your mom in permanent/persistent?

[MalJam in reply to mbheart]

Thanks

[Thomas45]

I'm 78, and have had permanent AF for about six years, after 21 years of paroxysmal AF. It's asymptomatic now. The only medication i take, for AF, is my anticoagulant, Warfarin. My AF does not cause any problems.

I have other ailments, asthma, BPH, lymphoedema in my lower legs and foot drop in my right foot, but apart from foot drop, they're all controlled by medication. I wear a carbon fibre ankle foot orthotic for my foot drop. I can no longer drive, but get around quite easily by walking and using public transport.

[Rainfern in reply to Thomas45]

Hi Thomas, this is just the kind of post I need to give my spirits a lift! We don’t need perfect health to be asymptomatic, and we can still get around with all number of ailments. You’re a star! 😊

[Omniscient1]

Me too. 14th glorious year (have to talk it up a bit). I've had problems, redundancy, idiot children, having to buy a new car, choosing which colour to paint the living room, but none AF related. So far.I don't know when I started with AF as I have never had that traumatic in and out of AF phase, but when it was diagnosed the cardio consultant said there was nothing that could be repaired,and I've been back a couple of times to re-check this over the years. Poo.

My chads score is still zero so I'm not on any meds, but that's inevitably on its way.

[MalJam in reply to Omniscient1]

Thanks

[BigHouseBob]

Hi

I have been diagnosed for about 3 years now (I think). Following initial investigations i was told there was nothing to be done other than mange the symptoms. As a result the condition is managed by using Rivaroxaban and Bisoprolol . Hopefully all is good with this but it is weird having a constant irregular rhythm.

[MalJam in reply to BigHouseBob]

Thank You

[Catlady56]

My Afib was discovered in 2019 when I had a massive pulmonary embolism. I had no clue I had it, apart from lacking in energy a bit. I was 63. Put on Rivaroxaban for life and Bisoprolol 2.5mg twice a day. One cardioversion that failed after a couple of days. I'm now 67 and my heart rate is well controlled with the meds, but unfortunately I was diagnosed as being in heart failure in 2020. Ejection fraction is preserved, so it's "old lady" heart failure. Afib continues on it's merry way and I don't notice it during day, only if when I wake in night. I also have lymphodema in both lower legs, which make life difficult too. So I'm very far from feeling or being "fine", but still alive!

[MalJam in reply to Catlady56]

Thanks

[Redmakesmehappy in reply to Catlady56]

I am 85, have heart failure too with preserved Ejection Fraction, never heard it called “old lady” heart failure but describes me, I am definitely an old lady. My AFib stays away with Flecainide but I feel so horrible taking it that I am trying to go without. Been two weeks, had an episode couple days ago, after about four hours I go some ice, put on my face and after two or three minutes my A fib disappeared. If that will always work, better than taking a pill but probably a fluke .

[Desanthony]

I was diagnosed with persistent Afib at 72 cardioverted successfully 3 times and in that time managed to stay in NSR for about 3 years out of 4. Couldn't cope with Beta blockers, calcium channel blockers or any rate control drugs though in the first year was put on about 6 different types and combinations. Was waiting for an ablation which would have come up the April of the first lockdown - so was cancelled. Then another I had to cancel due to a sudden death in the family. Carry on to just before the start of another lockdown and I was all ready to go into the cardio unit and 10 out of 15 of the staff came down with Covid - cancelled again. Roll on another few months and because this had gone on for so long, and I had gone back into Af after last cardioversion in the February before first lockdown which kept me in NSR for over 15 months they decided to do all tests and scans again and found my heart had helpfuylly re-modelled itself and slightly more enlarged than it would normally be when considering ablation and likely that any more cardioversions or ablations would not work in that case. Only on Anticoagulants and I am as right as rain - just old and that in itself can be a challenge. I had Covid and survived without any problems. I do everything I want to do and go to the gym doing circuit training 4 times a week and take our adopted dog on long walks most days - weather permitting. I am 80 in the next year so think I am doing fine so far.

[MalJam in reply to Desanthony]

Thanks

[Crystalbowl]

I am 77 and have been in permanent AF for several years’ now. I am also in heart failure, have a CRT pacemaker implanted and take Entresto, Nebivolol and Digoxin as well as Xarelto. My mother had AF and HF and lived to 87 so 🤞 I don’t think about it much.

[Ppiman]

I have an elderly friend with permanent AF and he is fine. His heart rate tends to be lower than yours, but as to symptoms, he has always said that he rarely notices them. I know that walking up an incline, even a mild one, with him, on our bird watching outings, has caused him to pause, but no more.

A resting heart rate of 90bpm is not considered as tachycardia but seems quite fast. Is your doctor happy with this?

Steve

[MalJam in reply to Ppiman]

He was not concerned with 90

[irene75359]

The GP discovered my mother had permanent AF when she was in her early 90s although we have no idea how long she had had it. She was frail, obviously, but lived a good life until 97.

[Deejay62]

I am in permanent AFib and I don’t feel a thing. Occasionally I get the missed beats and the fast beats and dizziness, but they don’t last long. I also have Ventricular Tachycardia and others so I couldn’t tell you what Afib feels like. I have a pacemaker defibrillator fitted, so I don’t worry about my various arrhythmias. I had AVnode ablation so I can’t even tell most of the time if my heart is actually beating, because most times it beats very faintly. The device controls it, I think. I can now stop any fast beats by breathing deeply. My heart rate is usually 70

With SVT I use to do neck massages to stop it. Don’t try it anyone. I was taught how to do it safely as a child.

[JOY2THEWORLD49]

Yes I am MalJam

But I am on 120mg Diltiazem AM and Bisoprolol 2.5mg PM.

I can't do without either yet.

But improvement suddenly happened last November H/R 62 - 69 when was controlled as introduced to CCB. Dropped from 156 to controlled 88- 96.

I do check H/R 4 times a month as it might drop further.

cheri JOY. 74. (NZ)

No symptoms bad enough to have meds... will then just monitor now and then.

[pwoody]

I have been in permanent AF for the past 18 months after having paroxysmal Af for just over 5 years. To be honest I don’t even know I have it now and don’t have to worry about waking in the middle of the night with an episode, up and down to the loo etc and feeling awful for a couple of days. My average HR is only about 70. I take Bisoprolol, Apixaban, Digoxin and Amlodipine. I do wear a Fitbit watch in case I need to check my heart rate, but that is not often. I hope this info helps.

[Gumbie_Cat]

I was diagnosed last year, when I was getting episodes that lasted a week. Though I was AFib free for three weeks each month. Since October it has been persistent, and an ablation in December only lasted two days.

I was disappointed to be told that I wouldn’t be a candidate for further ablations or cardioversions - just rate control now. Yet once I got used to the persistent AFib, I really feel OK! I do need rate control medication as well as Apixaban - on 5mg Bisoprolol each day. My HR averages in the 80s, though the resting rate is lower. It does go up when on outdoor walks - often in the 100 - 120 range.

Bit of fatigue, and my legs get tired on hills and stairs, but I’m lucky not to experience breathlessness so far. I do try to be careful about other risk factors, but it’s definitely something you can just get along with fine I think. (I’m 68, and not sure I would be running uphill anyway!) It is easy to get concerned when reading about risks of heart failure, dementia, strokes etc. Yet these are population based statistics, and I don’t think it takes into account those of us who simply have AFib and not other risk factors. Also, anticoagulation, rate control etc.

I just decided in the end (following a comment in A&E last year that I had ‘one funky ecg’) that my heart rhythm is funky but fine 😂

[MalJam in reply to Gumbie_Cat]

Good to hear you are doing fine as I am also. I'm actuality feeling better in it permanently. The hard part is to realize this is it and there is no turning back for me.

[Gumbie_Cat in reply to MalJam]

That took me quite a time to come to terms with. It was actually going on a couple of holidays and traipsing up castle towers, and up steps to waterfalls which made me think that I’m not actually as bad as all that! The only option for me would be ‘pace & ablate’, but that would only be if the rate isn’t controlled.

[Afibber73 in reply to MalJam]

Hey. I’m Debora and I really feel this group may help me cope with the changes necessary with persistent (if not permanent) AFib. It reared its head 2 years ago and was considered Paroxysmal up until July. Now it has moved to a new level. Was controlled with Multaq and metoprolol up until then. Dropped Multaq from nasty gastro effects. It has become ineffective with my AFib rhythm anyway. Now I’m just taking the Metoprolol and Eliquis. My heart rate needs to stay no higher than 90, as I have a small aortic aneurysm we are monitoring. My numbers are pretty good/ but I hate the side effects I’m having with Metroprolol. It’s a low dosage. Depression, sudden extreme fatigue and breathlessness when I rise and get going walking again. Then fine when I sit back down. Anyway I’m now trying to drop this heart med as well. I am in antidepressants ( have been for many years) so any drug I take that contributes to more us a no go for me. I’m not happy at all with what the cardiologist and EP have done to help diagnose the cause of my AFib. Pushing pills is not my idea of working with a patient on living with a condition like this. I am on my own - 73- a naturalist and extremely sensitive to a anesthesia. Attempted an ablation a year ago. It was averted when my BP dropped life threateningly low. I’m doing everything I can to help myself adjust and perhaps reverse this condition. Exercise, dropped Alcohol, smoking cannabis for anxiety- not having much fun. But I’m determined to make this adjustment and get part of my life back. I want to travel over at least be able to go out and have fun at the theatre an dance again with my friends. I feel like a different person compared to how I lived before AFib showed up. 😠😬Trying to smile and get more positive here. Nice to met you MalJam, et all!

[Threecats in reply to Gumbie_Cat]

I’m liking “funky but fine”😄I’ll have to remember that one!

[alfrae13]

Reading your post as well as others it seems that being in permanent afib does not change your life style too much. I am 92 male and have paroxymal afib which come on in 3 to 7 days intervals. I am on propranolol an eliquis. When afib occurs I start to feel weak and shaky. My BP and HR are normal. I take 100mg of flecanaide and go t bed. Many times I fall asleep. After about 2 hours afib is gone. I wonder should I go Into permanent afib if I would be able to function if my symptoms don't change

[doodle68]

Can those who experience very few symptoms in persistent and permanent AF tell me if they were highly symptomatic before reaching that stage or where their symptoms light .

After 6 years of progressive P-AF I am now at the stage of being almost in persistent AF but not quite with 5-6 day long episodes (once lasting 10 days) of highly symptomatic P-AF and day or couple of days that are AF free.

It is a nightmare, my symptoms do not reduced during the long days of AF misery and my life is seriously restricted. I feel I may still have the symptoms in persistent or permanent AF because they have always been severe .

I have been refused a cardioversion because I am not in persistent AF and there is a 10 week waiting list for those who are , Flecainide did not work and I am on a waiting list for an Ablation and have been since January. The wait for an ablation started at 8 months but may be longer now. I have no confidence in the team treating me who fail to maintain contact with me and make me feel I am a nuisance and that AF is no big deal and I should just get on with life in spite of the symptoms .

I wish I had chosen an ablation before Covid arrived cutting off my choices since the end of 2019. I was offered Amiodarone in January but after my negative experience with Flecainide I was reluctant to take what I understand is a short term drug for what could be a very long time.

[Gumbie_Cat in reply to doodle68]

I suppose that I wasn’t the most symptomatic of people. I did feel palpitations and my heart rate would go up and down to 170 bpm. I did feel tired, and would also get very weepy. I sort of observed the palpitations, but they didn’t get to me too much. (I was that person sitting and knitting on the trolley in A&E, while the alarm beeped!)

In the months just following my failed ablation, I felt very low. Noticed the palpitations more, and felt exhausted walking uphill etc. My Bisoprolol was increased, and by about 4 - 5 months after the procedure, I realised that I wasn’t feeling too bad. I rarely notice palpitations now. My legs get a bit tired on hills, but I push through. I do get sleepy in the afternoon, but I was always a bit inclined to do that.

[Afibber73 in reply to doodle68]

I hear you! It does feel like a nightmare, especially when docs don’t seem connected at all to the position this condition puts patients in! I was not denied cadioversion while in proximal AFib . But after the fourth one, it stopped working and now getting an ablation seems difficult to attempt. Don’t much like the idea of them being repeated- and running the risk it may not work once even create a more serious arrhythmia- a it all feels like a crap shoot to me. It is so subjective- this condition and treatment. Sure hope you are able to get something going to help with your AFib. I just feel like being used off about the whole prospect right now. Some retirement, huh?

[BobbyGee]

All these contributions are very interesting and helpful. Thanks, MalJam, for your enquiry and to everyone who responded. In my own case (permanent AF for about three years; age 75), I feel normal much of the time. I sometimes feel lightheaded after drinking a glass of wine and rising from the table sometime later, but my "worst" symptom is disturbed sleep at night -- waking up feeling a bit unwell for a time. That feeling usually passes after a short while. I am waiting for a heart monitor study that may identify the cause -- probably a heart rate that goes too low at night. That would indicate the need for a pacemaker. Elton John has had one of these since 1999. I'm currently on 2.5 mg Bisoprolol twice a day and, of course, an anticoagulant. Plus Ramipril and Amlodipine to control blood pressure. Good luck MalJam and all.

[Afibber73 in reply to BobbyGee]

I love Elton John.

[MalJam]

Thanks