AF Progression

[Amurray77]

I know we are all different, but I’m curious about others experiences. How fast has your a fib progressed? From first episode to say 5 years later? Just looking for a general sense of what could happen.

[Hidden]

It has been 3 1/2 yr since my PAF diagnosis. The episodes are getting less frequent. Early on they were 1-3 mo apart. Now my last episode was 4/18, the longest yet. I asked my heart doc what his opinion was re reoccurences. He said alot of times a stressful event, like an illness or surgery can do it. Last fall I had 2 surgeries and managed to sneak by with no a fib.

[Amurray77 in reply to Hidden]

That’s great news so they can actually lessen instead. That sure would be nice. Mine are getting farther apart as well and I just had diverticulitis and no a fib and boy was I I’ll.

[Hidden in reply to Amurray77]

Yes, I count my blessings every day and thank my heart every night as things can change fast.

[Auriculaire in reply to Amurray77]

I had 26 cm of my colon removed for diverticulitis in March 2018. I went into afib 3 days after the surgery. But I am really glad I had the op as I had so much fibrosis in that part of the bowel my gastroenterologist could not do the pre op colonoscopy. She said sooner or later I would have had a perforation. Now I can eat what I like without provoking attacks. I had two more episodes of afib last year but non so far this year.

[solarjdo69 in reply to Auriculaire]

I suggest that you look into Organic Apple Cider Vinegar benefits. May help your remaining colon stay healthy.

[bbrt294 in reply to Hidden]

My experience is the number of episodes can go down by half in three years without any obvious reason. The statistics come from my six-month checking of my pacemaker which records the events.

[BobD Volunteer]

As you say we are all different so generalisations are very difficult.

Yes AF is generally progressive but there are people for whom it has taken a very long time to reach a situation where their quality of life (QOL) is badly affected. For some it may start after a binge drinking session and provided that activity is stopped it could be many years before a repeat. For some it is caused by over exercise (endurance atheletes etc ) but de-training often means the AF stops as well.

LIve style issues are very important and can really reduce AF burden, often to the point where radical treatment is no longer required. Amongst these are a reduction in reliance on meat amd processed foods and a more plant based diet along with no alcohol,. no caffeine ,and artificial sweetners etc and foremost well controlled weight with a BMI of 25 or less. Some of our members have by adpoting these measures not only prevented progression but actually reduced frequency and strengths of events.

For my part three ablations between 2005 and 2008 stopped my AF but still left me with some other far less annoying arrhythmias so there is plenty of hope.

[Hidden in reply to BobD]

I made many life style changes, no severe ones. I think being able to retire from my stressful busy nursing job helped me alot. Guess I can thank my arthritic knee for retiring me at age 64🤣🤣🤣

[Gilli54 in reply to Hidden]

Yes. I agree. Job stress and Afib don’t make happy partners. I was a primary school teacher and had to retire age 63 as my work life balance was non existent. Hope your less stressful life continues to pay dividends 😃xx

[Amurray77 in reply to BobD]

I quit everything. No more smoking drinking or soda. I still drink coffee. Anxiety seems to set mine off.

[Hidden in reply to Amurray77]

Yes, me too. If I get over tired especially. I dont drink alcohol or soda either. Cannot give up coffee but no doc has suggested I should.

[Hidden]

You and I are about the same re a fib, as I was diagnosed 3 1/2 yr ago. I would be ignorant and lost in the forrest if it werent for the great, caring people on this forum. I will always be grateful to this group for helping educate me and calm my anxiety about the beast!

[dmjtanner in reply to Hidden]

So true Hoski, I am forever grateful!

[Finvola]

This topic has often caused me a lot of thought but, you are quite right - no one size fits all.

My first indication of what looks like an AF episode is in a diary from 2005. Funny turns continued now and again for a further 9 years undiagnosed without any obvious worsening of symptoms.

In 2014 I was diagnosed with PAF with some frequent episodes and started Flecainide. Since then I have been AF free, thanks to Flecainide.

My EP said that the most likely cause of progression in my case will be ageing. I have made ruthless lifestyle changes, stopped all alcohol and have found by trial and error which foods to avoid.

[Amurray77 in reply to Finvola]

Flecanide makes me deathly ill. It’s good for a PIP, but it makes me feel like I’m on the bow of a boat in the North Atlantic. Seasickness pales in comparison.

[Finvola in reply to Amurray77]

Strange how people differ. One of my odd symptoms before Flecainide was dizziness when sitting in the front passenger seat of a car going downhill! Once I started taking Flecainide, the symptom never recurred.

[secondtry in reply to Amurray77]

Are you taking Flec on an empty stomach i.e. 4 hours after an average meal. The only time I have a sickness feeling is if I take it too early when the food hasn't been digested.

[secondtry in reply to Amurray77]

In case you have not, try waiting 4 hours after an average meal before taking Flec (i.e. stomach need to be empty) and then wait one hour before eating anything. Very occasionally when I break this rule, I feel sick.

[secondtry in reply to Finvola]

We have very similar history & approaches. May I ask which foods you avoid? I have to watch more that I don't over exercise but in particular vagal triggers coming from the mind i.e. over excited, over relaxing. I think over 5 years I have made some progress in reducing stress/excitement and rebalancing the parasympathetic and sympathetic nervous systems to get them back to 'factory settings'. I think as we all get older we have to compensate for ageing with better food, drinking, exercise, stress habits. Good luck.

[Finvola in reply to secondtry]

I avoid all processed foods and cook everything I eat at home. No artificial sweeteners, colourings or flavourings, sugar (except where the alternative is artificial - eg in coffee). No alcohol ☹️ which I do miss, butter instead of gloop such as Flora. Very small portions of meat but lots of fish, vegs and fruit and I try to drink 2 to 3 litres of water/tea etc daily. Decaf tea but full strength Italian coffee (once daily!). Dairy products and gluten don’t seem to be a problem.

You are so right about stress - definitely a major problem for me at the beginning. Throughout my working life I had to think about and do a dozen things at once seven days a week and continued in that mode after retirement. Breaking that was a major step forward - slowing down, breathing and taking Mindfulness courses. I walk as much as our climate allows and am fortunate to have peaceful surroundings which are good for the soul. Dog cuddling and stroking is good too. All the best to you too.

[secondtry in reply to Finvola]

Thank you, very interesting regarding coffee and gluten. I cut both out completely for several years (give the body a break) and now eat some gluten but still on Italian barley coffee substitute. The rests very similar to your diet and it does seem to work...famous last words!

[Finvola in reply to secondtry]

Fingers crossed it continues to work for both of us. I had to look up barley coffee - I can just remember chicory being used after the War instead of coffee here. I might try it but I need my early morning ‘fix’.😀

[secondtry in reply to Finvola]

orzocoffee.co.uk

[inezelsie in reply to secondtry]

Did you know that barley is one of the three sources of gluten? Along with rye and wheat.

[secondtry in reply to inezelsie]

Thanks for the reminder, I do now have some gluten but much reduced including very week barley coffee. I do also have some caffeine (e.g. small amount of dark chocolate) and even the odd sip of wine. The thinking being that completely excluding things can make it difficult socially and if then you have something by accident your body reacts so much more.

[10gingercats]

My Af. situation has improved..... at 80..... I had an excellent and thorough cardiology checkup last Nov. and the cardiologist said there is a definite improve. I have perm. Af .I have often had a heightened state of anxiety due to hyperacusis but even so echo showed valves and gen. heart condition to be better than last complete checkup.......in 2010! It MAY be due to diet i.e. eating less, plus, magnesium. Nothing much else has changed radically.

[Ianc2 in reply to 10gingercats]

80? You have just cheered me up no end!

[Hidden]

In my case, 9 years from onset of PAF to pemanent AF. AF ablation at 4 years and AFL ablation at 9 years. 70 years old now, family history, hypertension, chronic endurance exercise and anxiety main causative factors.

[Hidden]

Hi,

I was diagnosed in Jan 2010. My initial symptoms were that I thought I was going down with 'flu.

Then my blood pressure became erratic - in those days my norm was 136/80 ish but during the day it behaved illogically and erratically dropping eventually to 78/50, GP put me into A & E immediately.

So within 9 hours from first symptoms I was diagnosed and treatment started. I eventually found it was food that triggered AF. I consulted a Nutritionist and acted on her advice and took on board a diet/food plan and can now say I have only had one AF event since April 2015. And that was sleeping on my left side.

For me the most critical thing was the speed of diagnosis and the speed of which treatment was started. Absolutely vital.

john

[Amurray77]

A pulmonary embolism caused mine in April 2018 I had an ablation in November and I’ve had 6 total episodes two after the ablation. So I’m wondering if it failed

[Hidden]

Since being on flecainde and making significant lifestyle changes mine has reduced as has my left ventricular hypertrophy which I suspect had a role in causing it in the first place !

[Bagrat]

It has not progressed at all with use of meds

[wilsond]

Well,mine is currently going in the other direction,after losing a lot of stress in my life,big lifestyle and diet changes and losing weight,hoping to maintain this as long as possible.I have been able to massively reduce my meds too,with medical supervision.I was diagnosed in 2013.

[Brizzy5000]

I must of had AF for 5 years before I was diagnosed properly, I was treated with beta blockers for number of years by my GP who then sent me to the cardiologist at our local hospital, he put me on flecinide which seemed to work for a couple of years, then bisiprolol as well ok for a while but my AF and Atrial Flutter was getting very bad, I was in AF or flutter for 3 to 4 days at a time with maybe a day or two inbetween when I was ok, so last year in May I had an ablation which (fingers crossed) seems to have worked as I am AF and Atrial Flutter free!

[President2012]

I have PAF for 18 years. For 17 of those I would have an episode once or twice a year which would last six or eight years. November last I had three within weeks of one another. Each lasted ten hours. Cardiologist changed me from metoprolol to Bisoprolol with flecainide as a PIP. No episodes since. Had a bad start with Bisoprolol but got used to it after about six weeks. But as everyone says we are all different. Best of luck

[Hidden]

First had AF 3.5 years ago, possibly longer than that as I remember palpitations several years before it properly kicked off.

So first real attack lasted about 4 months until I was cardioverted and taking amiodorone.

Stopped the amiodorone at about 3 months post CV and was in NSR for 6 months following this.

Then a year of in and out of AF with various CV's both electric and chemical. These lasted anything from a couple of weeks to a couple of months.

Ablation April 2017 and NSR since

[Supernerogirl]

Mine touch wood has not gone over

150 beats since it 1 st started my 1 st ever episode was 200

[Hidden]

Diagnosed 6 years ago and nothing major until a virus sent me to resus. Was getting slowly worse and waiting to go into permanent. However lately having tried to help myself, the episodes are getting further apart. Mind you having a good go now!! xx

[lizardo]

Sorry to hear this Amurray77. this is the start of a new life and due to the complexity of AF, very few people cope with it the same way. Mine was very slow to start off with. Being an ex nurse myself I was convinced I was having panic attacks due to stressful work situation in pharmaceutical sales. In 2014 I was officially diagnosed as having AF. At this stage I retired from work. Less stress definitely improved the situation but then I had an increased problem with family members and by 2018 I was in persistent AF which I tried to control on my own with breathing techniques and trying to reduce my anxiety levels. But the end of 2018 it was too much and possibly due to a home invasion in my gated retirement facility where I resided on 23rd December I was hospitalized on the 24th with 8 broken ribs from the perpetrator. As I was a professional development manager for a Cardiovascular company i had excellent access to the right person to sort me out. Remember it was Christmas, but I had access to an EP by 3rd January. Ablation was suggested which I went through without any trauma whatsoever on 17th January, but my AF persisted. I felt bloody awful (if you can excuse me for saying). for the three months before my next appointment. I could barely keep awake, I was so exhausted. Should have got back to my EP before my scheduled 3 month appointment. I knew the heart took quite a long time to recover and i didn't want to cause any fuss before my next appointment. My and the brilliantadvise is do not wait that long, if you are feeling foul get back to your EP. The ablation had kept me in Sinus rhythm for about 3 days and reverted to AF. Saw EP on 4th April

and he saw from my recordings that I had not been out of AF since 3 days after my ablation. Cardioversion was quickly organised and this was something I dreaded (and not much phases me) . 8th April was D-Day and what a waste of emotions. It was a piece of cake. The result is that a month after my c/v i am still in NSR. Just keep positive because we all react differently. All the procedures they do to take you on your AF journey are absolutely nothing to get anxious about. Space out and enjoy the sleep!!!! Enjoy the brilliant nursing care!!!

[dmac4646]

Diagnosed in 2009 had PIP (Flec) for 1 year episodes got to 40 in a year - started on 2X50 Flec in 2010 and am still on that dose - only breakthroughs are with chest infections or other viruses - lost weight ,drink very little am still working 5 days at 68.

[lwm1198]

interesting- I was in PAF often for the past three years but not usually a problem, then had two or three that knocked my socks off and told a nurse friend who told me to see my doctor! Of course I wasn't in Afib then, and we did pulmonary tests, ekg, and a stress test to no avail. Finally was sent to cardiologist who ordered Holter monitor, showed multiple events over four days, and then arrived at the EP's office in Afib on my second and third visit; Multaq gave way to an ablation! Seems to have done the trick although I know alcohol was a trigger and I still have a drink several times a week....must work on that!

[50done]

Wow, read all your replies, I’m new too and have same question. And as I previously believed, THIS GROUP IS AWESOME 😘😘👏🏻👏🏻👏🏻

[doodle68]

First known recognised episode of P-AF over 15 years ago following exertion and lasting about 5 minutes.

..then occasional short episodes of of P-AF type symptoms lasting only minutes, a couple a year.

Three years ago when I had a chest infection and cough I started having strange scary episodes of AF every day when swallowing solid food. They lasted just moments but I felt dizzy/faint/rapid heartbeat and this went on for 2 weeks then happened only occasionally.

I then began having episodes of P-AF a few a month lasting many hours, I was diagnosed with P-AF /made lifestyle changes/started medication of ACs and beta blockers.

I now have about one long episode of P-AF a month .