Permanent afib

[Judydiane]

Hi.....i'm new so maybe i've missed it, but I don't see posts about permanent AF, as distinguished from paroxysmal and persistent. I started with the latter but after two years and two cardioversions the afib has been permanent...... I would appreciate hearing from anyone with a similiar situation. Thanks, in advance.

[10gingercats]

I started off several years ago with 'a fast heart' according to a not too brilliant GP.Went to hospital...no action,no explanation. Then I started to feel really 'funny'. Off to the hospital again where with little explanation I was prescribed Amioderone. But I had done some homework and knew this this was not a drug to be prescribed if you have thyroid problems.At the the time my Thyroid probs. were complex and as yet then not properly treated. So the years rolled on until....long story short was finally sorted re. Thyroid prob. and told I had perm Afib.There is more but that is where the perm. Afib stopped.My pulse is not really measurable but it needed to come down and calmed and that was done with Verapamil.I still take it.

[higgy52 in reply to 10gingercats]

Hi,

how long was you on Amiodarone for,

i am same as you Been on Amiodarone for nearly 2 years and now got Hyperthyroid, now got to take more drugs to control Thyroid, They give you a drug to control your heart and it damages other parts of your body.

Good luck

[10gingercats in reply to higgy52]

I refused Amioderone as I knew it was not a suitable drug to prescribe if you have thyroid problems.

[Judydiane]

I declined rhythm control drugs because I was afraid of thrm and cardiologist assured me that staying in afib was ok as long as heart rate was ok.......but iworry about it, and about taking anti coagulants for years without end.

[Beancounter Volunteer]

Hi Judydiane

There appears to be differing definitions of persistent versus permanent, but the one I usually go by is if it can be brought back into NSR even for a few minutes, by either a cardioversion or by drugs, then you are persistent. If it never goes back into NSR then permament.

So I am long term persistent, 5 years now since diagnosis, and I almost certainly had it five years before, but CV took me into NSR for around 3 mins, and with drugs took me into NSR for 5 or 6 hours.

As you mention below, if the heart rate is not too high, and you are anti-coagulated with no other major symptoms, then we just have to get on with life. I forget about it most of the time, until I try and walk up a hill that is.

Be well

Ian

[Judydiane in reply to Beancounter]

Hi Ian.....I was able to get back to NSR with each cardioversion.......both lasted for a while......in fact, after the second one I never even knew I was back in afib til I was having an ekg as part of a pre-op exam for carpal tunnel surgery. I was totally shocked (no pun intended) and my cardio said there was no point in doing another cardiiversion.....and so it just stayed and became "permanent". Since i've been told that cardioversion doesn't work when afib has been peesent for a long time, i've never considered it.....

do you take drugs to keep your rate normal? Has your doctor suggested any of the various surgical fixes or stroke reducers?

Judy

[Beancounter Volunteer in reply to Judydiane]

Hi Judydiane

Then I would say that like me you are long term persistent, I too did not feel any different when I was in NSR for a few hours.

I take very low dose calcium channel blocker and of course an anti-coagulant, nothing else.

I think you mean ablation doesn't work for long term persistents and I understand that to be true, or at least the success rate is much lower.

Not really any point in intervention now, I have almost no symptoms, I get on with my life, what's the point of a medical intervention that could, potentially, make it worse?

Be well

Ian

[Judydiane in reply to Beancounter]

Thanks for the encouraging attitude........how long have you been in afib.....persistently??

[Beancounter Volunteer in reply to Judydiane]

Hi Judydiane

5 years since diagnosis, probably 5 years previously roughly.

Ian

[Judydiane in reply to Beancounter]

Thanks Ian.......you're right...at this point its just something we have to live with. I made an appt.with an electrophysicist, just to get a better handle on things but I might just cancel.....dr. sanjay gupta provides so much good info on his youTubes that I might just skip it. Have you ever watched his weekly internet thing where he actually takes questions?

[Beancounter Volunteer in reply to Judydiane]

No go to your EP, it's important that you have individual diagnosis, and that they do other tests to ensure there is nothing else wrong. Please don't just rely on anything so non specific as internet videos. You need someone who knows to talk about YOUR situation

Ian

[Judydiane in reply to Beancounter]

You're right......I guess i'm afraid to hear of anything else "wrong" with my heart.

[Spiritji in reply to Beancounter]

Similar

[Gunnersawus in reply to Beancounter]

Hi Ian and Judydiane.

Very interesting reading your stories. It's early days for me, but I was diagnosed with "new onset" AF in early August this year. I'm not sure how long I had AF before and neither is the Cardiologist so I'm not sure why they said it is new onset AF in A & E? Since then, I have been in "persistent" AF and on Bisoprolol and Rivaroxaban. I am 56, take regular exercise on my bike. Had a CV in October which put me back in NSR for 4 days only. Currently considering having another CV. I am very much asymptomatic at this stage as I was before I found out I had AF. I've changed my diet for the better and virtually cut out all alcohol and caffeine in coffee.

Having read lots of accounts of people who have scary episodes of PAF and some people who suffer after effects of a catheter Ablation, I too am wondering if I will eventually just try too live with persistent AF as long I am asymptomatic and do not suffer in terms of Quality of Life. Just a little concerned about being on these meds for the rest of my life as I have always been healthy before and never had to take meds.

Would be interesting to read both your views on this

Thanks for reading

Ian

[Judydiane in reply to Gunnersawus]

Hi Ian......your post didn't mention what precipitated your diagnosis of "new onset AF"......did you have symptoms at that time that have since gone away? I ask because that's what happened to me.......I had a terribly frightening episode of very heavy racing cardiac activity. I couldn't get it to stop (tried breathing, rest, sedative, etc) and was so sure I was having a heart attack that I called an ambulance to get me to a hospital. I'm saying this because that's not happened again. And i'm so grateful for that. And it seems like you might have a similar situation.

Like you, I was "young" when the I got the shocking diagnosis, especially...also like you....I was a very healthy no-meds type person. Hearing I had a "heart thing" frightened and saddened me, and very definitely changed my view of myself. And the idea of taking a drug that tampered with the delicate and critical balancing act my body does to clot and unclot my blood was, and is, very very unsettling. But, with all that said, the idea of a stroke unsettles me more.....bottom line for me is that i'm grateful that at this point I don't have uncomfortable symptoms, and that there's a way to avoid a stroke. What a still grapple with is whether or not I really need an anti coagulant....I think not but i'm too scared to go off of them. That's my story.

you said you're taking bisopropol...is it for high blood pressure? Is that your only risk factor? Does your cardiologist think a second CV might stick?

[Gunnersawus in reply to Judydiane]

Hi Judydiane.

I got stung on my tongue at our 30th Wedding Anniversary Party and went to A & E. it was then I was diagnosed. I was completely oblivious about AF up until then and had no prior symptoms and I still haven't got any symptoms apart from the odd palpitation. Currently I'm taking Bisoprolol to reduce my heart rate which is down to mid 70's. Blood pressure is notmal. I'm not sure if Cardiologist thinks another CV is s good idea, but I think I'll find out in January. GP has said my CHAD score is zero and she will help to advise me on whether I should stay on Rivaroxaban once they have seen the results of an MRI which they need to do as an echocardiogram in August showed a dilated left ventricle. Cardiologist isn't sure yet if AF caused Dilated left ventricle of vice versa.

Once this is all verified, they say we should have a clearer picture of whether I should be coagulated in the long term.

Happy days and good to exchange experiences when we both have persistentl AF and I'll look out for your future posts.

Take care

Ian

[Judydiane in reply to Gunnersawus]

Going in with a bee sting and coming out with a "heart condition".......what an awful surprise.....but it was actually good that they found it.....so now you can take care of yourself..

About the dilated parts...my last echo showed a dilated left atrium.....I think its a result of the afib...not a cause.......but your having a chads of 0 means no need for anti coagulants.....that will be terrific....i'd love to hear what your doc says after reviewing your whole situation...

J

[skipabeat in reply to Beancounter]

I am considering AV Node ablation to help eliminate some of my permanent A-Fib symptoms, Mostly to elevate the fatigue and breathlessness. I hope Im making a good decision... the only other choice is amiodrone UHG

[xdbx in reply to Beancounter]

Very similar. I've had PAF for over 15 years. I had CV back whe I was first diagnosed and was in NSR for just two days. Since then i has never gone back.

I take Bisopralol and Warfarin. The beta-blocker slows me down a bit but doesn't bring me to a halt. I do my own INR testing and go for an NHS blood test every 3 months.

Like you I forget about it most of the time. It's really only an issue with any kind of BP machine! It completely baffles them 🤣

I'd love to not have to take these meds indefinitely but I know of no alternative and I lead a fairly normal if quietish life with my crazy jazz drummer beating away to it's own creative rhythm!

I'm also on steroids now for an inflammatory auto-immune disease and this definitely complicates things with the PAF...but that's another story!

[cassie46]

Hi Judy

I am in permanent AF and take Biso, Diltiazem, Ramipril and Rivaroxaban. I also have accasional heart failure. I have never been offered a ablation or a cardiversion and I do not know when it was considered that I was in permanent AF. On my admission notes in Jan 2014 i just states AF. I had asked my cardiologist for a referal to an EP but was always declined your doing fine on meds) . My symptoms (diagnosed Jan 2014) have been under reasonable control but the last year things have not been so good. I am not a candidate for ablation or cardiversion. I have not been happy with my treatment at the hospital and recently paid for a private appointment with at EP at Papworth.

Result, he was not happy I had not been referred a couple of years ago and now my only solution is a pace and ablate. I am now on his NHS list, have had some tests (on NHS) and awaiting results of those. Still coming to terms with the pace and ablate and whether I will have it done, But things cannot go on as they are. He also said I could come of all meds if I have this except Noac. He even said the drugs are probably making me feel ill.

Cassie

[Judydiane in reply to cassie46]

Hi Cassie......sounds like you've got a lot on your plate. Hopefully the EP will give you some good news. I'd be interested in what he says. Your story makes me think i'll keep the appt I have with an EP for a couple months from now. I know they are much more up to date on afib things.

Thanks for your reply.

Judy

[teach2learn in reply to Judydiane]

For sure! My occasional bouts of af turned into permanent af within a year's time, while GP and cardiologists stood by, trying meds. A neighbor with a heart rhythm problem was the first to mention seeing an electrophysioligist and at his advice, successful ablation followed soon after, along with removal of all meds but blood pressure and apixiban. It took a second ablation 18 months later to "clean up" but doing well two years later without symptoms from af nor nasty meds. Best wishes!

[Judydiane in reply to teach2learn]

I'm happy for you.....you were fortunate to get to the right doctor soon enough to really fix the problem. I know its too late for ablation to work for me, but at least i'll get current information.

Thanks for your reply.

[teach2learn in reply to Judydiane]

Maybe not (too late). Lots of new techniques and technology every day. Good luck!

[cuore in reply to teach2learn]

The same thing happened to me.

[mumknowsbest Volunteer in reply to cassie46]

Hi, I have had a pace and ablate, it doesn't stop the af but does stop the symptoms.

I am still aware of the fluttering feeling at times, but that is all. If you are very symptomatic I would recommend it, but it is a big decision because once done it cannot be reversed. Good luck with whatever you decide.

[Judydiane in reply to mumknowsbest]

Thank you for your reply.

[cuore in reply to cassie46]

What a sad story that your cardiologist wouldn't refer you. I was getting the same substandard vibes from my cardiologist, but bluntly told his receptionist that I needed to see an EP as the cardiologist was not an expert signals of the heart. The one appointment consultation with the cardiologist was most inferior and a complete waste of time.

A friend of mine was also told that his option was pace and ablate. He went to Bordeaux, France for an ablation last December and now he is in sinus rhythm.

[cuore in reply to cassie46]

What a sad story that your cardiologist wouldn't refer you. I was getting the same substandard vibes from my cardiologist, but bluntly told his receptionist that I needed to see an EP as the cardiologist was not an expert signals of the heart. The one appointment consultation with the cardiologist was most inferior and a complete waste of time.

A friend of mine was also told that his option was pace and ablate. He went to Bordeaux, France for an ablation last December and now he is in sinus rhythm.

[Spiritji]

I have been told I have permanent afib ..... I take Pradaxa for a blood thinner because if I had a stroke it would be a hardship for people in my community . I take 120 diltizen for rate control as it appears those drugs are less intense than rhythm control. It pretty much does not bother me and hardly notice I have it...unless I drink White wine which might make it noticeable when trying to sleep.. I have had it for about 12 years .... seems. Not as hard for us it seems as it is for the people who have episodes which sound really challenging

[Barb1]

It seems that ablation is recommended for those in persistent AF when their symptoms affect their daily life. Then it is worth trying the procedure.

[Judydiane in reply to Barb1]

Thank you for your reply.

[concup]

Hi Judydiane,

I have had Afib on/off for over 20 years. Mostly it stopped after a short time without medication. I became dependent on tranquilisers to overcome my anxiety as I waited for the Afib to start...and my proudest achievement was to stop them and learn to accept, and educate myself about this monster, (much easier said than done)

Late last year it became persistent, which meant I could try and go back into normal if I choose drugs, cardioversion or ablation. After extensive research and discussions with my medics I have decided to just run with it.(with apixaban) Latest research has said that either rate or rhythm control offers similar survival. I guess I'm lucky in that my rate is fairly consistent between 80-100,so I don't really notice it to much.

Just my experience, but hope it helps.

[Judydiane in reply to concup]

Congrats on giving up tranquilizers........i've carried some in my purse ever since my first, very symtomatic episode. About the rhythm/rate control choice, my doc said the same thing.

Thanks for your reply.

[cuore in reply to concup]

The latest research that I have read is that ablation is superior to meds. There even appears to have a movement to change the guidelines to have ablation as the first line of defence.

Sorry I cannot post the articles, but it would take me too long to do the research.

[momist]

Judydiane , have you ever had an echocardiogram? I ask because I think such a thing is necessary before just treating the AF blindly. You need to know there is nothing else going on with your heart. My (slightly unsatisfactory) visit to the local heart clinic featured an echocardiogram that was then repeated by someone more senior, who then ordered an MRI scan to ensure he had seen everything that needed to be seen. He then gave me a clean bill of health for the 'pump' part of my heart, and I had to insist at the GP on seeing an electrophysiology consultant later, about the AF.

[Judydiane in reply to momist]

Yes, I have had an echo.....I think twice....and fortunately, my heart was fortunately normal.....so I have "lone" afib with no underlying issues to blame the afib on!!!

Thank you for your reply.