Afib progression time.?: Does anyone... - Atrial Fibrillati...

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Afib progression time.?

Jetcat profile image
56 Replies

Does anyone know how long it takes for lone afib to progress to permanent.? Or is it possible to have lone afib for ever.? Iv had afib for 6 years I’m 53 year old male, Iv also had 3 pvi ablations for lone afib but cannot seem to get any real statistics as they all seem to differ so much.!!! My cardiologists gave me different answers too unfortunately.

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Jetcat profile image
Jetcat
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56 Replies

It’s my understanding that all lone afib means is that there are no obvious reasons for having it is such heart disease, high blood pressure, diabetes, obesity, drink or drug issues and participating in extreme sports, the list goes on. Whether it’s paroxysmal, persistent or permanent I don’t think makes a difference........

Jetcat profile image
Jetcat in reply to

Thanks flapjack.👍👍

in reply to Jetcat

Do you mean progress from paroxysmal to permanent......as CD says, piece of string.......

Karendeena profile image
Karendeena in reply to

I agree flapjack, I have lone afib and that is what a cardiologist told me

CDreamer profile image
CDreamer

How long is a piece of string?

It may stay paroxysmal ie:- comes and goes;

it may progress to persistent ie: you can be cardioverted but you don’t self cardiovert;

and you may progress to permanent ie:- you and your doctors agree that it’s no longer worth chasing the holy grail of NSR and you adjust to life in permanent AF, which many do and live quite well with some adjustments.

Lone AF just means there is no known underlying conditions or co-mobidities causing AF which might be treated which may help the AF.

Sorry, but that is why you probably can’t find statistics - too many variables and too many inconsistencies to come to any meaningful answer. Your cardiologists are probably answering from their own clinical experience - which may differ.

What you can do is give yourself the best possible chance of not progressing by addressing all the Lifestyle Factors which influence and worsen AF such as No1 - Stress both physical and psychological.

Then by avoiding other known triggers - being overweight, alcohol, caffeine poor nutrition, sleep - rest and recuperation is far to underrated for healing and exercise - no exercise bad, moderate good, too much - very bad.

Everyone reacts very differently so I would be quite surprised if anyone could give you a definitive answer.

Jetcat profile image
Jetcat in reply to CDreamer

Thanks cdreamer I appreciate that. 👍

Given that you are new here, can I suggest you click on the link below and navigate through the information to find out most of what you need to know to understand the condition.

Due to your relatively young age, it might be a good idea to see an EP, that’s an Electrophysiologist which is a cardiologist who specialises in arrhythmias. Under the current climate, this could take some time on the NHS so if possible, consider a private appointment which should cost less than £300 but beware of tests such as an Echocardiogram as these are very expensive. This route would help you to establish a treatment plan specific to your condition because as CD has said, AF is complex and different for everyone.....good luck

healthunlocked.com/afassoci.........

Buffafly profile image
Buffafly in reply to

I think someone who has had three ablations might have seen an EP before.......

in reply to Buffafly

I think you are right, but sadly Jet says he not getting any answers from his current medical team so it’s was only a suggestion 😉

Jetcat profile image
Jetcat in reply to

Thankyou flapjack I will go on the link.👍 I like the relatively young age bit mate. I feel 93 sometimes though.👍 I love this site and all the great advice and help I get from you guys n girls. Thankyou very much.

waveylines profile image
waveylines

Hello Jetcat so sorry but cant answer your question......lol......but you have all my sympathy. What I can add is it is worth looking outside the box. I was diagnosed with P-Afib two years ago probably due to sucessful cancer treatment am told though they vould find no damage on their tests to the heart.......so no one will treat me beyond medication.

Interestingly enough though due to a variety of horrible symptoms which were causing me to feel increasingly poorly I finally decided to go gluten free nearly two months ago. I feel so much better and as an extra my heart has settled down. The P-Afib has not gone but occurs far, far less frequently and my racing heart has returned to a normal frequency -that is from the high 90s to low 70s at rest! First time in 5 years! Something the medics hadnt been able to achieve. Am delighted. Am hoping this might well mean I can reduce my meds.

Doctors know very little about vitamins, minerals and nutrition and its effect as they are not trained in this area. It might be worth a nosey. I am not saying it will take your Afib away but if the body is stressed the Afib plays up more. We are complex......

Hope this doesnt sound too nutty!!

CDreamer profile image
CDreamer in reply to waveylines

As you know, I’m very into nutrition and it’s worth noting Prof Spector’s new project on gut microbiome. I think the subscription for the trial is now closed in the UK, rolled out in the US but it will be very interesting study to follow as this will take the guesswork out how our body responds to various foods. I did well on 12 months of sugar, gluten and dairy free. It didn’t stop my AF but I felt a LOT better. You don’t need to stop them forever but just be very careful when you reintroduce them to your diet to stay little and occasional.

joinzoe.com/

waveylines profile image
waveylines in reply to CDreamer

Thanks CDreamer. This time though am sticking to gluten free as I had a lot of tremors which have died down since I stopped eating gluten......I suspect the gluten was causing them as it has been linked to damage to the cerebellum.....not sure of the mechanism but two NHS doctors did a lot of reasearch into this. Its also lovely not to have indigestion or tummy ache!!

Lewis1234 profile image
Lewis1234 in reply to waveylines

Gluten free has worked amazingly for me too. Was having Fast PAF twice a month for 2 years, then after going 95% gluten free it is now only 2 or 3 times a year. I decided to try it based on reading about the vagal nerve and inflammation. I have always self converted back to NSR within 24 hours, that has not changed.

Karendeena profile image
Karendeena in reply to Lewis1234

Hi Lewis1234, I find that if I eat sugary foods my afib starts! This condition is so weird

waveylines profile image
waveylines in reply to Lewis1234

Thats great news Lewis. 😊

Jetcat profile image
Jetcat in reply to waveylines

Thankyou for that. And I will definitely look into it. Anything is worth a try, as you say we are very complex

Lewis1234 profile image
Lewis1234 in reply to Jetcat

The gluten free diet took about 2 months before it made a difference. My AF is lone so no other heart issues. The few episodes I now get I can possibly put down to being dehydrated or eating late? But it's a guess.

secondtry profile image
secondtry

My understanding is any PAF Lone or otherwise will lead to more trouble.

The episodes need to be stopped, maybe one or two a year but ideally zero. I agree with Waveylines reduce gluten by 95%+ and do the same with added sugar and processed food.....why all this, well AF (& other chronic issues) I am pretty sure is often tied up with maltreating the body causing gastric & inflammatory issues. I have benefitted.

Nerja2012 profile image
Nerja2012

Jetcat , If its any help I am the same as you on AF front, I have had arithmia problems all my adult life heart checks started around your age but no cause was ever found. Just said I had an abnormal heart beat but it was normal for me, I'm now 76 ( female) I have had one AF episode in the last 14 months, so for me the progression is very slow and long may it continue ,I count myself very lucky as I know a lot of people on the forum have much worse problems. As the rest of the group advice triggers are the important factor, in my case stress anxiety and alcohol , I've never been able to drink much alcohol so that's never been a problem but stress and anxiety are part of life. I wish you well , I know it's hard not to over think things, take care.

Jetcat profile image
Jetcat in reply to Nerja2012

Thankyou. I feel lucky too. for last few months Iv been doing good 👍 Iv always been a stress head and worrier, suffer with anxiety and had bouts of depression and I don’t think that’s helped matters.! I’v always worked and still do now so for me I’m happy. I don’t stress over things now or get angry anymore,

Nerja2012 profile image
Nerja2012 in reply to Jetcat

Jetcat. I still have a small glass of wine with my evening meal but I know any more and id be on a highway to hell 😂 I have always been slim. active and live a very healthy life style but then I always have. I think things like AF can be genetic and in my case both my parents had AF my mother died at 98. Her epitaph said ! Shut Up and Get on with it. Wise words.

Jetcat profile image
Jetcat in reply to Nerja2012

Yes I agree, my mother has been plagued with ectopics all her life, so her sisters my aunts.? I became aware of palpitations/ missed beats in my late teens. Always fit and active, still are now at 53. So yes I definitely think there’s genetic s involved.

Nerja2012 profile image
Nerja2012 in reply to Jetcat

You sound like a male version of me. Told I had an irregular heartbeat at 22 palpitations all my life. Stress head. Anxiety and genetics. 76 now and still all of the above but doing ok. I wish you well.

Jetcat profile image
Jetcat in reply to Nerja2012

Your my inspiration nerja, and may you still be around for a long time to come too.👍👍

Karendeena profile image
Karendeena in reply to Nerja2012

Lol sounds like my mum! Almost 93 and always saying don't worry. Yesterday's gone, tomorrow's to come, live for today! Every day is a gift that's why they call it the present! I believe that it's the worry/stress that causes a lot of the problems with afib!

Karendeena profile image
Karendeena in reply to Nerja2012

Hi there, stress is my trigger too. I was finding it strange that I was having episodes on Saturdays and often weekly, I then put 2 and 2 together and realised if was the stress looking after my 92 year old mum who has become quite cantankerous in her old age and was really winding me up!

Nerja2012 profile image
Nerja2012 in reply to Karendeena

Your right Karendeena but there's so much of it in life especially at presant. In my case it's more anxiety,and it's taking anticoags that's causing it, so if it's taking anticoags that's causing the Anxiety and anxiety that's bad for AF where do you stand. I need a magic wand 😂x

Jetcat profile image
Jetcat in reply to Nerja2012

Hi nerja, is there a specific reason why your hesitant in taking the anti coags.?

Nerja2012 profile image
Nerja2012 in reply to Jetcat

There is Jetcat and I have had some very good advice in the past from members on this forum including Bob and I am very appreciative for the advice but it still doesn't take away the Anxiety which is personal to my situation. Both my parents had AF, my Dad died in his sleep at the age of 68 from a bleed on the brain ( warfarin ) my mother also had AF but because of what happened to my Dad refused Anticagulation and died recently of natural causes aged 98. As I said I have had 1 episode in the last 14 months and my Doc said I may never have another one but the risk is still there and I know that. I hung out till 1 month ago and started taking Apixiban , I score 3 on chads purely because of age and gender as I don't have any health issues but I will have if the Anxiety continues. I really do appreciate all the advice I have been given but at the end of the day the decision has to be mine. Strangely enough I used to run the warfarin clinic at my local hospital. I bet youwish you had never asked 😂

Jetcat profile image
Jetcat in reply to Nerja2012

I understand your anxiety now. One afib episode in 14 months is good too.

Karendeena profile image
Karendeena in reply to Nerja2012

Hey there I wish we had that magic wand! This condition is getting to me, like a vicious circle, one aggravates the other!

Nerja2012 profile image
Nerja2012 in reply to Karendeena

And so it goes on Karendeena it's a frustrating condition for us all. Take care.

I was told by an EP that it justcannot be predicted- it’s possible that you could continue with lone AF, or progress to persistent then permanent AF. Studies show that those who cut their weight (10lbs was the amount required) and /or cut their alcohol consumption to just about zero (moderate alcohol consumption isn’t good enough) are less likely to progress.

As for how progression might occur, I don’t know whether this would be a gradual process of worsening AF or can occur overnight. I have always assumed the former, but I could be wrong.

Jetcat profile image
Jetcat in reply to

I think I could work on the alcohol bit.? I know it’s bad for the body and I do have a drink in the evening with a meal. So that is something I can cut out. My weight, BP, diet are fine.

in reply to Jetcat

You might find this article interesting: britishcardiovascularsociet...

Karendeena profile image
Karendeena in reply to Jetcat

I used to love my wine and drink loads of it. When I was told I needed to limit it I went cold turkey and stopped altogether last July. I can honestly say I do miss it but too scared to have a drink now. Has it stopped my afib happening....No, but it would probably be worse if I started drinking again

cuore profile image
cuore

I am surprised that you would have THREE ablations for pvi without progression beyond the pvi. That would mean that your veins have reconnected twice and you did not get to the persistent stage. My EP told me that it is the time spent in persistent before the first ablation when the heart really remodels. You would have to have an extensively remodelled heart that could not sustain sinus rhythm to be in permanent AF.

If you don't get to persistent, you won't get to permanent. With the new techniques such as Pulsed Electric Field that ablates the source rather than creating scar tissue, you many never get to permanent.

in reply to cuore

Is Pulsed Electic Field now used routinely (or likely to be)?

cuore profile image
cuore in reply to

Currently there are trial being done. The last time I looked into it, it was still about three years away. There is a great deal of enthusiasm among EPs, so it will likely be.

Jetcat profile image
Jetcat in reply to cuore

That’s interesting Iv learnt something there, Thankyou cuore. The EP did say I had reconnections/ breakthroughs. I was actually planned a fourth ablation last year but it was postponed because of the covid situation. I’m glad I didn’t have the procedure carried out actually.? Because out of desperation of not been able see the cardiologist I started myself on magnesium 250mg daily just to see if it would help with the daily ectopics that I had been getting for ages.! And I was shocked because my ectopics ceased within a week.👍 I was overjoyed. I was also getting near to my monthly afib episode time that would happen in the early hours and it never appeared.!!! Iv gone nearly six months without any afib episode. First time in years. I hope it lasts.👍👍

Karendeena profile image
Karendeena in reply to Jetcat

Hi Jetcat, I have heard a lot about the success of Magnesium supplements in fact a friend of mine uses a cream formula on her feet and it's stopped her restless legs! I am nervous about taking in with sotalol and apixaban, do you take it alongside your meds?

Ducky2003 profile image
Ducky2003 in reply to Jetcat

Hi. What type of magnesium supplement do you take?

Jetcat profile image
Jetcat in reply to Ducky2003

250mg oxide. But to be honest oxide is not the best choice but it seems to work for me.

Ducky2003 profile image
Ducky2003 in reply to Jetcat

Thanks for that. What makes you say it's not the best and what led you to that one? When I asked my EP/cardiologist what his thoughts on supplements were, he said they were not proven to be of any use with AF but so many folks seem to he taking them.

Jetcat profile image
Jetcat in reply to Ducky2003

Hi ducky, I asked my EP about magnesium supplements 2 years ago and he point blank wasn’t interested in the subject and told me he did not treat arrhythmias with magnesium.😳 so it put me off magnesium for a while.! Last year I was booked in for a another PVI ablation but because of the dreadful COVID situation I was unable to see my cardiologist so in desperation I bought magnesium oxide 250mg and started myself on them to try and calm my ectopics and I can’t believe the difference. Oxide doesn’t absorb into the body as good as other sorts of magnesium but I’ll stick with these as they seem to be having a great affect so far.👍

Ducky2003 profile image
Ducky2003 in reply to Jetcat

Thanks. May give it a try then.

sdweller profile image
sdweller

I've had "lone" afib for over 25 years now, and it's not progressed to chronic. And my electrophysiologist at the Cleveland Clinic told me he does not expect mine to progress to chronic at this point. Of course, anything is possible, but there are no guarantees either way. And now that the treatment options seem to be increasing, optimism is gaining. But of course, it is ESSENTIAL that you get with the best Electrophysiologist you can find as soon as you can!

Jetcat profile image
Jetcat in reply to sdweller

That’s good to hear. I’m glad for you. It’s a little encouraging 👍👍👍

Diver2 profile image
Diver2

I was told by my doctor that after a year or so of afib it becomes chronic (permanent) however I have had Afib for 17 years and it is still not chronic. Everyone is different and every cause is different even if it appears to be the same. My ekg is the same in afib as it was 17 years ago. When I’m in one Flutter with no afib it is different than the last when I’m in the 2nd Flutter it’s similar to the ekgs I’ve had over the years. My heart still stops to throw itself into Sinus rhythm. I have a pacemaker now that constantly run an ekg. Then is printed out quarterly when I have my pacemaker check. I keep copies of all my ekgs from day one so the doctors can check back and see if they’ve changed or if they can clarify their diagnosis.I’m no longer in lone afib since I’ve developed diabetes and am nolonger 54 yrs old🥴

You will probably have to track your own results. Your reactions from foods and noises and exercise will tell you the best course for you. Good luck and don’t get discouraged...

Flimmeri profile image
Flimmeri

Hi Jetcat! I don't think anybody knows.

I started A-fibbing at 47 years old, I'm now 72, female. 2ablations, no help. Been very active and fit. Sometimes think maybe did too much. But my sister was mostly a couch person with AF, so maybe not. I have a timer, it seems, for A Fib, once a week. This week made it nine days! I'm in one now, kind of nasty one, too weak and light headed to do anything. Bed day which is a waste of time, when it's so nice out and have things to do. Cardiologist said often these lone ones can become permanent. I know three people with the permanent AF and they are a lot less symptomatic than myself. So kind of waiting to get the permanent one, lol!

Think I will give a try for gluten free, won't hurt.

Jetcat profile image
Jetcat in reply to Flimmeri

Yeah I know what you mean.? Iv seen lots of posts about life seems easier in permanent AF than paroxysmal.!!! I’m 53 years old so hope I stay paroxysmal until I’m 60 then I can continue working then claim my work pension at least. 👍 but who knows.??? I hate this afib stuff sometimes but I’m still glad to wake up every morning and I’m thankful for everything in life.( not afib though) 😂 but I just think there is millions of folk around the world who are not as lucky as me even though I suffer with afib.

Haveafib profile image
Haveafib

Hi Jetcat,

I had lone PAF for over 4 years with episodes that started every few days and then reduced to once a month and then once every 6 weeks being controlled with Flecainide.

The PAF then started getting more frequent until became persistent AF in a short period of time 4 months ago. I do not feel any bad effects from the now permanent AFIB and my EP says there is no reason for me to continue to take Flecainide anymore - so that's a good thing. Still take an anti-platelet (Xarelto) to reduce the possibility of a stroke. Otherwise, I am a healthy and fit male, 69 nine years old and was diagnosed with PAF in January of 2016.

Jetcat profile image
Jetcat in reply to Haveafib

That’s nice to know your doing ok.👍

Haveafib profile image
Haveafib in reply to Jetcat

Thank you Jetcat, just taking it day by day and so far so good. Still have AFIB though. Hope all goes well with you, best wishes.

Enjoylife4u profile image
Enjoylife4u

I pretty new to the AFIB life, was diagnosed OCT 2020. I have an Ablation scheduled for the 23rd FEB...10 days now. There’s new belief that getting an ablation early on has higher success, and that’s what I’m leaning on. The EP that I have is a Professor at Emory Hospital in Atlanta and has a pretty high success rate. I checked out the Dr Wolf Mini Maze (a lot of info on YouTube, etc, and I talked to him on the phone) if I was in your position. He’s had high success rates (93% AFIB Free, and off all meds) with his procedure, especially with people that have had multiple procedures. I’m giving my EP the first go at it, hopefully he’ll knock it out. Hope this helps a bit.

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