What does permanent afib feel like?

[JudyMarieC]

I've occasionally seen members on this forum say that they are in permanent afib. Does that mean you have a rapid heartbeat, irregular heartbeat or a combination of both at all times? I think I may be headed in that direction.

[FancyPants54]

Hi

Mine is probably permanent by now, certainly persistent. I used to have horrible, violent proximal Afib that floored me and came out of the blue. I don't feel this most of the time. I take 2.5 Nebivolol beta blocker now and my heart rate is 90's much of the time, but I can't feel it. Occasionally I'm aware of it, but mostly not and when I am it's not bad.

It's so much better than those awful bolts from the blue.

[Hidden]

When I was first diagnosed with lone persistent AF, I had no idea that there was anything wrong with my heart. The only reason I saw my GP was because I was having periods of mild breathlessness which I assumed was a return of the asthma I suffered as a kid. When I had the ECG and it showed an irregular pulse rate of around 128 and there was talk of lifelong warfarin and betablockers etc etc which was when the fear took over and the symptoms became only too apparent. I often wonder what would have happened if I had not gone to the doctors, I probably would have bumbled along much as normal until if, or when, I had a stroke. I think permanent AF means different things to different people but most say that once the body adapts, it can be less problematic than having episodes of AF. As long as it remains medically controlled and anticoagulated most of the folk I know just take it in their stride and live relatively normal lives. Not sure if this helps you but I think there are no definitive answers to your question.

[JudyMarieC in reply to Hidden]

Yes, that is helpful FlapJack. Thank you very much!

[4583 in reply to Hidden]

Very helpful as I feel I am in that group!!...Thank you!!!

[PamH75 in reply to Hidden]

Were you symptomatic during your 'out of the blue' AF events? I am very symptomatic when I have it and feel great when it is not there. If I end up with permanent AF if I experience the same symptoms as I do when I get it now I think that would be unbearable.

[Hidden in reply to PamH75]

Sorry Pam but I don’t understand your question. I was diagnosed with persistent AF therefore at that time, I was in AF all the time. There were no “out of the blue” events like people with paroxysmal AF have. As I said, at the time, the only symptoms I had when diagnosed was mild breathlessness.

[BobD Volunteer]

Permanent AF is defined as when you and your doctor agree that no further attempts to return you to NSR are appropriate and rate control only is given.

Most people in that state adapt quickly to the condition as the violent switches from AF to NSR and back are absent and the body quickly ignores it.

As one member in asymptomatic permanent AF was told by a leading EP "you lucky bugger!"

[Hidden in reply to BobD]

I remember him well.....👍😉

[JudyMarieC in reply to BobD]

Thanks, Bob. I know a couple of people with asymptomatic afib and they certainly are "lucky buggers".

[jeanjeannie50]

I'm in constant AF and my pulse rate can be anything between 60 and 90, but to be honest I rarely check what my pulse is doing these days, I spent too many years doing that! I can sometimes tire very quickly if I exert myself. When I used to have PAF my attacks were severe and I'd often end up being admitted to hospital. Far prefer what I'm like now.

Jean

[JudyMarieC in reply to jeanjeannie50]

Thanks, Jean. I'm getting similar pulse rates with occasional irregular episodes. I'll be seeing my EP on Wednesday for the first time in over a year. Most of my appointments have been with the nurse practitioners so I'll be anxious to see what he has to say.

[LordGabriel]

I have persistent AF. I did 6 months in constant AF before my first cardioversion. I had a permanent headache and was very breathless. I had a very high heart rate. Always above 100.

Awful times. When I go into AF I do not go back without any intervention. However the intervention works!

Ablation for me Tuesday.

[Hidden in reply to LordGabriel]

Fingers crossed for good result!! Best wishes.....

[Hidden in reply to LordGabriel]

St George’s if I remember.....😉....who is doing it?

[LordGabriel in reply to Hidden]

Yes St George’s- Dr Li ❤️

[cuore in reply to LordGabriel]

Wishing you the best especially since you have spent time persistent. 👍

[sleeksheep]

Mine has been permanent for nearly a year (AFIB 2010) I dont notice it at all now pulse rate varies 55 to 80 bpm. Not rapid just some extra beats.

I dont even notice anything different even if I sleep on my left side.

Only on Diltiazem and Rivaroxaban .

I used to have cardioversions as being in AF made me lethargic and easily tired but since flecainide stopped working I havent felt any different so the cardiologist has put me on review. That just means make an appointment if needed outside the usual follow up.

[Hidden]

Mine is permanent, meaning to me, it's just about constant, and that ablations, drugs, and big life-style changes (which have all helped enormously), have not removed the constant irregularity.

Mine isn't rapid, although I do get bouts of very fast flutter sometimes, it is mainly just irregular. My heart feels a bit wobbly, is doing little jumps, that sort of feeling, usually very gentle. I'm used to it. I can usually reduce the feeling by holding my breath if it gets too much.

When covid situation has settled, I'm going to seek further help and see if there are any other options, but at the moment, I'm staying in our own little lockdown, which I'm quite enjoying.

[RoyM]

I have been in permenent AF for over 4 years now. My resting heart rate is below 70 and on exercise can increase quickly but rarely exceeds 100. I take Apixiban and 1.25mg of Bisoporol daily. Being in permenent is much easier to live with than the constant NSR/AFIB flip. I still walk at least 3 miles a day, cycle, swim and chase my 7 year old granddaughter around I have lost the top 10 percent of my exercise capability I am 73 so I can live with that. For me going into permenent AF in May 2016 was a game changer. I am one of the lucky ones in the sense of I don't suffer any adverse symptoms and am not aware of my heart's irregular beat unless I feel my pulse. Roy

[tunybgur]

Hi Judy,

We're all different, but I first realised there was a problem when my wife and I were on holiday in Venice doing lots of walking. I was having trouble keeping up with her and I realised my normal energy levels were down.

Checking my pulse it was a little bit faster than normal and slightly irregular. A subsequent visit to my GP and an ECG indicated it could be AF (which I'd never heard of before), and he immediately put me on warfarin.

Further tests and monitoring confirmed the diagnosis and after several months we found flecainide was effective at keeping me in sinus rhythm and my energy returned, which is where I am now after about 4 years.

Good luck

[Crystalbowl]

I think I am in permanent AF now and I don’t really notice my heart rate now. I am also in moderate to severe heart failure with a CRT pacemaker implanted. I am paced at 70. I am going for a check of this tomorrow as it is about a year since the op and later in the week I am having an Echo to see if my EF has changed. I take Nebivolol 10mg, Digoxin 62.5 mcg, Candesarten 32 mg as well as Rivaroxaban, Spironolactone and Fuorsemide.

[Jajarunner]

I can barely walk and struggle to get upstairs! Needed a cardioversion each time 😢

[Barlick43]

I started with AF after the insertion of 4 stents 12 years ago. Apparently this is most often caused as collatoral damage from any intrusion into the heart as the bio pacemaker (the sinus node) is very very delicate. I then experienced “head crashes” like a train racing across my mind and after 2 years of monitoring one was caught on a 48 hour monitor. My heart was stopping and rebooting (lucky me). A kick in when needed pacemaker was inserted and over next 8 years I went from being in AF 11% of the time to 35% to 70% to 100% My only sign of being in AF Is my varying degrees of breathlessness.

Now I am in permanent Silent AF An ablation was carried out to burn off my bio pacemaker- sinus node and give the pacemaker control of my heart rhythm pulse. This was to prevent the AF triggering Ventricular tachycardia. I am and always have been unaware of the AF, no fluttering or speeding. My sympathies for those who don’t have my silent type.

However, About 6-8 hours after drinking wine I get extreme palpitations which I have been told comes from the effects of alcohol detoxication by the liver. It’s not the alcohol but the remains after normal detox. None of the bisop/solotolol meds affected the AF, all increased my breathlessness.

I hope there is something in my experience that helps someone out there.

None of this cost me a penny(I live in U.K. nhs) And with eu/AUst reciprocal agreements I have had free treatment in both Sweden and Australia where my children live and I spend 4 months of the year.

[smtmonkey11]

Hi I have a permanent Arterial flutter this means for me my heart is totally wild without the drugs I take. I had an ablation in March just before lock down and had a steady beat of around 55 without any problems or drugs then a couple of weeks ago the rate went to 170 and all over the place back into A&E and a couple of days in Hospital and now back on beta blockers and a rate of around 65/85 still fluttering but not as much.

[djmnet]

I'm persistent for almost a year. From my perspective, persistent/permanent is far easier to contend with. I do not feel at all like I'm in afib, whereas when I was paroxsysmal (episodes weekly), it always sort of knocked me down and I spent the day in my recliner until it passed. Now I'm able to go about my business without any awareness at all that my heart beat may be irregular. My resting HR is typically 85-95 or so, and I feel completely normal except for some slight breathlessness. I don't take any drugs except eliquis for stroke prevention.

[Lilypocket in reply to djmnet]

Hi how do you know what your HR is. When I'm in Afib it's all over the place and despite drugs remains quite fast. I am fairly symptomless but I can feel it ( like a couple of small mice having a fight in my chest) but don't feel faint or totally breathless.

Take care

[djmnet in reply to Lilypocket]

By checking my pulse manually or with a pulse oximeter.

[Lilypocket in reply to djmnet]

Thank you for replying. I tried manually but it' so fast and irregular with funny quivers and not beats ( if you understand what I mean) I find it very hard to count. No idea what an Oximeter is 🤔

[djmnet in reply to Lilypocket]

It's a little clip you put on your finger and it tells you what your oxygen saturation is along with the heart rate. In the US it costs less than $20 and is very useful. Heart rate in afib is going to be erratic, but it gives you an approximate reading. Also, oxygen saturation (should be 95 to 99) is an important thing to monitor in these times of covid19.

[Lilypocket in reply to djmnet]

Thank you for your answer. I'll try and get one ( I live in France). My cardiologist always asks me how fast my heart beats during an episode when I visit for my 6 monthly check- up and I can only make an estimation based on what the pace feels like.

Take care.

[BobbyGee]

My experience is very much like JeanJeannie's -- I have a heart rate that fluctuates between 60 and 90, and I can't exert myself too much (but I take a 30-minute walk every day). My AF became permanent in May; when I managed to get a GP to call me ("don't come near me, I'm a doctor") he just told me to double my dose of Bisoprolol from 2.5mg to 5mg. I also take an anticoagulant and Ramipril (the latter to control blood pressure). I'm 72. With permanent AF, I have become less agitated by what were sudden "bursts" of paroxysmal AF, and I guess I'll have to learn to accept the fact that I'm not firing on all cylinders. As for your question about the type of heartbeat, I'd say mine was regularly irregular -- something like "slow, slow, quick, quick, slow". As regards persistent AF, my advice is to be persistent with your GP if and when concerned about how best to manage it. Good wishes.

[cuore in reply to BobbyGee]

Love your take on persistent. 🥊

[JudyMarieC in reply to BobbyGee]

Thank you for your reply, BobbyGee - very helpful.

[S11m]

My AF was persistent - but they did not give up - and eventually fixed it with three cardioversions and two catheter ablations.

Rapid pulse rate is often a symptom of AF, but I have Bradycardia AF, and before I had the pacemaker, my pulse rate was getting down to 35 at night. A pulse rate of 30 was OK when I was an endurance athlete - but was causing paralysis from the eyelids down when I had AF!

[Ianc2]

Hi JMC

I have had permanent AFB for about 4 years. I had valve repairs in 2014, an ablation for flutter thereafter, followed by a period of about a year of normal rythm. Unfortunately I got zapped by a virus and my heart decided to become regularly irregular .

It doesn't really bother too much. I can still knock about 10.000 steps a day in but I notice it if I stop exercising very quickly. I am doomed to keep fit, watch my weight and my diet. My fitbit tells me my resting heart rate is about 50. I am 75 so I don't intend to push it too hard. Nice and easy does it..