How long have you had AF?

Some really good posters here and good advice. Everyone has their own story, I was just wondering how long have you been on your AF journey.... both officially (as in diagnosed) and unofficially (when you look back at symptoms you had which were probably the AF also)

For me, first episode was caused by a massive physically violent (on his part) argument with my then teenaged step son in 2006, it resulted in my stating on CCU overnight and in all honesty I can't remember what, if any, treatment. I just remember the HR not settling for hours and me feeling like I was about to pass out.

Then in 2013 some 6 months after my marriage broke down and 2 months after starting 12.5 hour shifts I had a further massive episode and was diagnosed/commenced on meds.

Be interested to hear how long you've been coping with it both early days and since diagnosis.

31 Replies
oldestnewest

Probably ten to fifteen years up to diagnosis in 2005 then on and off till last ablation in 2008. No AF since then but still have other less troublesome arrhythmias.

2 likes
Reply

Ten years since hospital diagnosis following long lasting virus.. Mine is persistent.

Cardio versions and Ablations did not work for me.

2 likes
Reply

Probably had my first 'funny turns' in 2006 and GP could find nothing wrong (natch, NSR came back). After two more trips to GP, I decided it was caused by getting old (then 62) and tried to ignore the funny turns and save wasting my GP's time.

Had a massive episode and was hospitalised in 2013/14. Started on Bisop and Flecainide and have been AF free since then - ectopics and tachycardia visit occasionally just because they can.

Before I knew it was 'my heart' I didn't bother too much about it - my worst symptom was not being able to breathe - never noticed the irregular beat at all! The worst six months of my life were from diagnosis to starting Flecainide - tests, waiting, more tests, dreadful episodes every few days, Sotalol which made things worse, fear of dying, fear of going out - just pure fear.

5 likes
Reply

It started around ten years ago I think . I dug up an old conifer and when I stopped work I suddenly felt ill, faint/dizzy/breathless /heart behaving strangely and beating fast. The episode was over in moments and I dismissed it as 'overdoing things on a hot day'.

There were further infrequent episodes again ignored until suddenly a year ago they started getting more frequent/severe/lasting hours. I was prompted to have a look what it might be on the Internet and having done so thought I better see a GP who didn't seem to know much about arrhythmia and wasn't at all concerned . It took me 6 months from visiting the GP to get an appointment to see an arrhythmia nurse, a ECG and diagnosis.

I shudder now to think I could have had a stroke while awaiting a diagnosis and starting anti coagulation.

1 like
Reply

Probably about 20 years, not diagnosed till 2003 when it became persistent. Luckilly I was hospitalised till they found the right drug for me, then ablation a couple of years later, now back on drugs which are working well.

Overall it has been something that has usually been controlled and in many ways it has changed my life for the better.

Koll

1 like
Reply

My heart first went off the rails in 1990 and eventually I was diagnosed with SVT which was caught on ECG. However when I was about to go home after my first ablation in January 2011 I was told that I had paroxysmal AF. I feel I'm not much worse now than I was 27 years ago.

1 like
Reply

Diagnosed July 2015. Became really unwell, bloated up, very breathless, told everyone who commented on how unwell I looked and sounded it was the Nora Virus. So now, Permanent AF, flutter, and my own strange Arrythmia. Pretty heavily medicated, failed CV, no ablation possible, full lifestyle change in progress. In and out of being really unwell again. New GP who does not understand. Cardiologist says I am cured, or as well as they can get me. Told my wife a few weeks ago, I am really fed up of feeling like shit. Someone on here said something really profound recently. They got frustrated about all the changes and alterations they have to make as doors close. That said, there are others in much worse predicaments, so.....onward and upward and look forward to another day tomorrow.

3 likes
Reply

Have you thought of going to Bordeaux, France to get a diagnosis from them as they are tops in the world for AF?

Reply

Yes checked all of that out. My final prognosis was given by Professor Richard Schilling at London Heart. Also some eminent Scottish EP's. My issue is that I am pretty symptomatic, one of the unfortunate ones! Pet hate of mine is when people say, Oh my uncle has that, AF. He plays football. I sit there breathless....Anyway, as I said, you just have to get on with it. One issue that may be of interest. The cardiology department regard me as 'cured'. ie, I am filled full of medication on a daily basis. No more appointments. I went back to the new GP last week and asked for a referral. I want another echo, and full heart check. My concern is that the medication in a subtle way loses efficacy over time, and that my heart may be altered without me knowing. I want that checked, every two years. I have found with AF that you the patient, has to push all the way, learn all you can, and go armed with confidence to the medical folks. Tell them what you want, and how as an individual you want it. Otherwise, in typical NHS fashion, you may miss your next appointment. Take care out there.....

1 like
Reply

Officially diagnosed January 2014 ended up as an emergency addmission to cardiac ward for 12 days. Had been unwell for three months prior, fluid retention, breathless, tired ect. Saw a GP 4 times during that time, one even noted my heart rate was high and erractic but put it down to womans problems. Had loads of scans and MRI for female probs but all clear. Then found lump in my breast during this time, so then off for tests for this and was diagnosed with breast cancer day before addmitted to cardiac ward with heart failure. AF was diagnosed after loads of tests ect. Been medicated since then. I have had two more stays in hospital with AF since then, had to fight the cardo to change drugs, would not refer me to an EP, asked 3 times for this. I think my cardio is not a fan of ablations, just medication and he has a very limited no of drugs he will prescribe. Prefers to up the doses, my body didnot like this.

I am now in permanent AF (do not know when this happened, may be on first admission, my notes just say AF). Anyway in the las two months I decided that I had to see an EP to sort out where I stand so got my GP to refer me privately to a EP at Papworth.

Have seen him and it is not good news, to far gone for ablation so it is pace and ablate - which I am still considering, he also wanted a new Echo and 24 hour ECG monitor, but this wouls be done on his NHS list.. Was never offered a cardioverson over the nearly four years, would like to have know if I could have been converted into NSR even if it had been for a short time. Have now had Echo (a very thorough one it took 1 hour - not like the one I had at the local hospital in August was in and out in 15 mins) and 24 hour ECG monitor. This was done on his NHS list. So await these results shortly.

I am sure I have had AF for many years, probably going back 15- 20 years, but attacks were always put down to stress and panic attacks.

so I plodd on and make th best of it - been seeing a osteopathe for the last 2 weeks (neck problem) she seemed well versed on AF and helping to get some balance back - must say I have felt a lot better the last week - got another session tomorrow.

Cassie

2 likes
Reply

You might want to have an evaluation from the Bordeaux group in Bordeaux, France before you pace and ablate as "you are still considering."

Reply

Hi Cuore - what makes you say that is there information I should know about!

Reply

Bordeaux, France uses the cardio-insight vest to more accurately map where the rogue signals are coming from. A friend of mine was told that he had to have a pacemaker. He went to Bordeaux, France where they did an ablation. He is now in sinus rhythm without having a pacemaker. I am not saying that Bordeaux group would come up with a different conclusion than that which you have; I am saying that it is always wise to get another opinion.

1 like
Reply

6 years ago but looking back maybe 2 years before that as i played a lot of football i put the shortness of breath down to age but i was wrong went for a health screen and it was picked up

1 like
Reply

My journey started in 2010- (I live in California)

My first episode was 2010. Went to ER because I had dizziness, nausea, and felt very unwell. Heart rate 286. Hospitalized for 5 days and put on amirodorane to bring HR down. Diagnosed with Afib at that time. Switched to Sotalol a month later. First ablation in 2011 (Afib free for 5 mos). Cardioversion 2013, pacemaker in 2014 (because HR in mid30s from the meds) and second ablation this year in May. Better but still on Sotalol.

My grandmother had Afib and my mother has permanent Afib. Definite genetic connection for me, but also triggered by certain foods and stress.

I have a high stress career and struggling to cut back.

This site has been a great help. Thanks to all of you

3 likes
Reply

Had had palpitations on and off for some time and various ECGs but as I have paroxysmal Afib nothing showed up. Had to go into hospital for day surgery about 4 years ago and young anesthetist suggested I ask my Dr for 24 hour monitor or change Dr! Bingo! Have had various changes of tablet, a quick trip to A&E

1 like
Reply

Sorry shot off without me! And am still trying to get under control. Had an attack Tuesday night/Wednesday morning and have just slept for 10 hours. Also have under active thyroid so one lot of tablets messes up the other! Still, 74 and still answering to my own name so can’t be bad

Di

2 likes
Reply

Since 1963. Episodes were years apart at first, and gradually got more frequent. I didn't know it was AF until sometime in the '80s or '90s. Many trips to the ER, they always Xrayed to see if it was a heart attack. I usually stayed until it converted, which was around 12-16 hours most times. GPs had me keep taking Cartia for many years. Then cardio and EP put me on Sotalol, then Amiodarone, and now Flecainide. Been taking magnesium along with the Flecainide for 3 weeks, and it seems to be helping. Cardio and EP never mentioned it, I found out about it here.

2 likes
Reply

My AF started 20yrs ago,very troublesome until Consultant put me onto 3oo mg Flecainide when I have a Paroxysmal AF episode ,it has worked wonders for me,touch wood,no episodes for over a year now,but no doubt it will turn up sometime,to remind me it is still around.Keep well.

Eleanor.x

1 like
Reply

Since 2003. Many types of meds. On bisoprolol and flecanaide now. Had 4 cardio versions, but the last one didn't,t work after 3 hits. Had second ablation aug 30. This year. Doing pretty good since , only one episode, so hoping for the best. i really believe mine was brought on in 2003 by a brain aneurysm, that they repaired by coiling inthe brain. That was fixed100 per cent, but then afib. This forum has been extremely helpfull to me. Thank you. Thank you. Marney from Canada.

2 likes
Reply

Since the day of the Royal wedding! Plus side: nobody in A&E. Nobody! Minus side: Had to wait till the nurses had watched Kate go down the aisle before being treated :D Brought on, I think, by overdoing it massively because our daughter had come over to stay. Trying to do all my work overnight while spending the days with her and our granddaughter, plus a ton of housework to make sure the place looked good. That'll do it...

2 likes
Reply

since 2005 - diagnosed 2009 - had daily episodes till 2X50 mg Flec controlled and have very few episodes now usually brought on by chest infections/colds - also take magnesium

Reply

Diagnosed in 2015 but suspect have had it for a number of years prior to that. Went to GP with episodes of dizziness and palpitations but was put down to build up of pressure in my ear.

1 like
Reply

Since July 2016. I went on my usual bike ride and was struggling up hills as I had no power. I thought I may have a chest infection so I left it a week and then went to the gym and tried a static bike that reported a high HR. I thought the machine was faulty, so tried another bike and had the same result. So, after a trip to the GP, then A&E I was diagnosed with persistent AF, not sure what happened to the paroxysmal part. Numerous drugs, cardioversions and an ablation have followed. Currently in NSR.

1 like
Reply

Over 25 years ago. I think that I had become extremely dehydrated only really drinking black coffee all day supplemented by red wine in the evenings. A hot August spell and some night sweats did the rest. Then, PA F gradually getting more frequent until successful ablation two and a half years ago. Now not much coffee or wine and no more problems.

Peter

Reply

I was diagnosed with A Fib in December last year. The trigger I think was a long car journey so I was stressed when I arrived.

Thinking about it I had been ignoring the signs for at least a year blaming the breathlessness on smoking and the rapid heart beat on the stress of losing Mum and Dad close together.

Was completely shocked when diagnosed and still find it all very scarey and yet I have survived three lots of cancer!

1 like
Reply

I was undiagnosed for at least 10 years. I was diagnosed 6 years ago and as a result my AF has been well managed between ablation and medication for the last 5 years. My quality of life is therefore better now than it was for at least 12 years previous. Fingers crossed it continues as I really dont want to go back to how it was. X

Reply

Diagnosed 2007 but had 2 big episodes in 2005 & 2006 Which lasted 4 hours and 36 hours respectively for which I didn’t seek medical attention - as I wasn’t in a position to being in the middle of an ocean and hundreds of miles from a doctor.

Looking back I had palpitations since childhood but Which only lasted for a few minutes so I just thought it was normal and ignored them. (No sympathy for illness in Mg family).

I found out later that my father had also had palpitations all his life and only found out he had been diagnosed with AF from his death certificate - but he died in his ‘80s after struggling with kidney failure for 10 years.

Interesting reading all of the replies and many people who have had it for 10 years or more and living with it as chronic condition and yet many still living life to the full.

2 likes
Reply

2009 and now in Persistent AF still travelling the world. I am lucky. It hasn't really affected my lifestyle in fact living with persistent AF as been much easier than PAF.

Reply

Went to the Gp August 2016 asking for iron tablets as I felt faint and breathless whilst running. Was sent for a 7 day holter monitor. A few days after returning it was phoned by the hospital and told to come and see a cardiologist the following day and not to drive anywhere.

I was told the had seen heart rates of 225+ on the monitor but my resting heart rate was 42 with many 6 second pauses (hence having to surrender my driving license).

I had an ablation in January, at the 3 month review the pauses were still there, so 5 days later they put a pacemaker in. Nearly a year from when I first went to the Gp, I was then able to get my license back.

I have been diagnosed with AF, sick sinus node syndrome, Atrial flutter, Atrial tachycardia and bradycardia.

The ablation didn't work and I have now been put on flecainide and will have to decide if I want another ablation.

I am 43, vegan , not a natural worrier, exercise regularly and had no risk factors for my Af - but feel grateful to this group for making me feel very humble, as it could be so much worse.

2 likes
Reply

Hi I was only diagnosed in March this year and had an ablation in July......early days and no AF episodes 5 weeks after surgery. Have to say that now I'm back in work full time I'm having very raised HR of around 115/120 when I'm under pressure which worries me. I honestly believe my Afib came on when they started looking into my ectopics through total fear and anxiety as this as this has all happened very quickly for me and I went into meltdown when they told me I had two leaky valves. It's my worst nightmare having an issue with my heart. My dad died when I was 13 from a heart attack.......... I have tried all my life to do everything I can to keep my heart healthy........ironic!!!!!

Reply

You may also like...