How long with AF?

[rothwell]

I have had PAF for 3 years - diagnosed at age 66. I am really interested to know how long some of you out there have had this complaint. Also did you begin with paroxysmal and end up permanent and if so, how long before this happened?

[BobD Volunteer]

I probably had PAF for about ten years before diagnosis and another four during which I had three ablations. AF free since 2008 although I do have some other arrhythmias. AF is almost always progressive but the time frame varies enormously. Very Very occasionally a person could have one or two attacks and then nothing . It's a very mongrel condition with little commonality amongst patients so your question is pretty much impossible to answer I'm afraid.

[rothwell in reply to BobD]

Thank you anyway...why do you think that you probably had it for ten years? Also it would appear that your 3rd ablation has worked if you have been AF free for 8 years. So would you recommend an ablation and does one have to be in permanent af before an ablation iis offered? I never see a cardiologist presumably because I have PAF but the incidences are increasing although they do stop after a few hours.

[BobD Volunteer in reply to rothwell]

The sooner the better for ablation. You must see a specialist to get the right treatments. Back when I started my journey AF was a mystery to most people including doctors who either didn't recognise it or brushed it off as a minor inconvenience. I moved house in 2004 and my new GP 's mother had AF so she knew what I had and referred me for appropriate treatment unlike the idiot I had previously been with who never understood it at all.

You MUST see a specialist and not just a cardiologist. Electrophysiologists are those specialists. Ask your GP to refer you. You should also be assessed for stroke risk as this is your greatest risk as AF increases stroke risk by a factor of five.

Go to AF Association main website and read up on all the subjects so you are better informed and can be pro-active about your treatment.

[Finvola]

I've had PAF for about 9 years and for the first 6 of those years it was undiagnosed and then unregulated by drugs for 1 year. During that 7-year period the frequency of episodes increased slightly at first, the odd one now and again, through to roughly 6 two hour episodes a month. At that point two years ago I was prescribed Flecainide and have had no AF since.

My EP has told me that the condition may still be progressing with natural ageing (I'm 72) but he feels that ablation shouldn't be considered yet as I have good quality of life, tolerate Flecainide well and the risks (in my case) outweigh the possible advantages.

We are all different and our versions of AF differ so much that it is really impossible to give any definite answer to your question. For example, I have a friend who has had PAF for 25 years and who lived a normal life on drugs until an ablation earlier this year. At that time the symptoms had become more troublesome but were still PAF, not persistent.

[CDreamer]

I probably had undiagnosed AF for at least 5 years before diagnosis in early 2007. Was AF free after ablations 2013-2014, recently returned but not nearly as symptomatic.

The Gold Standard - I was recently told - was to have ablation within one month of first episode. Bear in mind that ablation has only been around for about 20 years and that it has only been accessible for a majority in the last 5-6 years so treatments and the whole field of Electrophysiology is novel to many professionals, never mind patients.

Drug therapies will work for some people but all the drugs have side effects in the longer term, if not immediately noticeable.

Whether or not to go down the ablation route is entirely personal and may I suggest you research carefully and consult your EP as to whether or not It you would be a suitable candidate, the sooner ablation is performed the higher the chances of successfully eliminating the rogue electrical signals.

[rothwell in reply to CDreamer]

Thank you everyone for your interesing comments... Clearly like me none of you like to go to bed early!! Will try to seek out an electro physiologist in Newcastle.

[Hidden in reply to rothwell]

You could ask your GP to refer you to EP at the Freeman. There are a few of them there!

[rothwell in reply to Hidden]

Thank you Julie I will do this. Do you know if there is any support group iin Newcastle?

[Hidden in reply to rothwell]

Sorry I don't know. If you click on the little face on the top of this screen you should see an option to find others nearby - you maybe could message some local people and ask them? Or maybe there's someone reading this who knows of a group and could tell you. Good luck.

[Trish5 in reply to rothwell]

Hi Rothwell ...I'm from Newcastle, too, but living in France. Hope you get yourself sorted with a good EP. I don't think I've found one yet! In 20 years I've had two tachycardias and three afib attacks. I have Flecainide as PIP. Best Wishes. Trish

[rothwell in reply to Trish5]

Merci Trish....do you take Warfarin and if so, is it monitored in France?

[Trish5 in reply to rothwell]

No. I can' t take anti coagulants because I have a very small cavernoma in the brain that could bleed though the E R did put me on Eliquis for three weeks with the go ahead from a neuro surgeon. The ER says I'm 0 chads score until 65 which is in 3 years time. That's why I'm hoping my afib doesn't develope since I can't take the anti coag. I think they tend to give the new noacs now in France rather than Warfarin.

[checkmypulse]

I must have 'had' AF for about 2 years and knew nothing about the condition before diagnosis. At first I was just aware of palpation's which lasted an hour or so. I went to Dr when incidents became more frequent and had more effect, ie tiredness and lightheartedness. GP arranged ECG and I happened to be in AF at this time. Paroxysmal AF was diagnosed. After trying drugs and then finding this forum, I sort out referral to EP and 12 months after seeing GP had ablation 1, failed, 5 months later ablation 2 and apart from a couple of incidents of raised h/rate but in S/R all ok so far. So seek out an EP please. Best wishes. Knowledge is power.

[Steve112]

Often referred to "as a mongrel of a disease" we can understand why..mine was detected only when having a knee op some 5 years ago..how long have I been suffering from AF I have no idea as I have no symptoms whatsoever ..was it a one off nobody knows..can I get a referral to see an EP No I can't despite changing GP's 3 times..my Cardioligist just says stay on Bisoporol for the rest of your life ..they put me on blood thinners for 3 months then after a standup row between my Cardioligist and my bloods nurse I was taken off there was talk of ablation then it was forgotten...I have no yearly referrals with my Cardioligist no organised check ups with my GP nothing..this AF affects so many people in so many ways...I am hoping to see an EP privately soon just for I guess a little peace of mind as the people we put so much trust in really haven't got a clue....

[Goldfish_ in reply to Steve112]

Ouch. It sounds like you aren't getting much trouble so I can see why they don't feel check ups are going to help. Your only way of diagnosing a recurrence is likely to be with self monitoring. We all have a responsibility to manage our own health and the NHS can only offer so much. If you want more then private is the way to go

[checkmypulse in reply to Steve112]

steve112, just read your previous posts, it's sad that your GP 's are so obstructive. In my case I found EP's information, read up on them as much as possible, 'picked' one, spoke to his private practice secretary, went back to GP asked for a referral to him and this was done that same day. I did go NHS in the end and just had about 6 weeks wait. Why don't you seek out an EP, ring his secretary, either private or NHS and ask his/her advice, explaining the situation. He or she may be able to find a way through it all. In your area do you need a GP referral to see an EP privately? The cost I believe is between £160 -£210 ish, got to be worth it , if you can't get through the 'red tape'. After initial appointment , you often 'end' up in his/her NHS list.

[Tobw]

Was diagnosed with AF in July 2008, but was having episodes at least fifteen months before that.

I tend to have two different types of AF with the more usual one being one long episode (the longest I have had is 53 hours) and then weeks and months of NSR, but I also have spells lasting three to four weeks where I seem to be walking a tightrope between NSR and AF when I have frequent shorter episodes which can nearly always be got rid of by going on a walk up the hill close to my house.

I'd not had any of the latter for about eighteen months, but the last month or so has seen it come back - currently I'm three days without an episode and am beginning to allow myself to think that things may be returning to normal.

I was initially put on Sotalol which didn't agree with me and then Bisoprolol which I have taken for over eight years now. I was put on 10mg a day when I was first prescribed it and, because I didn't have anything to compare it with at the time, did not question what seems to be a needlessly large dosage now. I've since asked why I needed to go on 10mg a day when so many others are on something like a fifth of that and have more or less been told that I may as well stick with it now because my AF seems to be fairly well controlled.

I last saw my EP just over a year ago when he told me that I could go on Flecanide if things got worse and, if that didn't work, an ablation would be my only option. Last week I decided that I would make an appointment to see my GP sometime this week if I kept on falling in and out of AF, with the intention of discussing whether this is the time to make a change to the medication I'm taking, but three days AF free has me hoping that the start of me taking Flecanide (which has to happen eventually I suppose) can be delayed for a while longer.

[Hidden]

I'm 66 also. Mine started in my early 40's with just occasional fast heart rates. I was put on Propanolol (I think...long time ago!) which worked. My ticker didn't bother me too much and I didn't have to take much medication until my early 50's. Then I started to get more of a thumping heart and a bit irregular. That developed quite quickly up to the age of 53 when it became constant. I think the last bit where it changed from PAF to constant was just a few months.

That was when I was diagnosed with AF, prior to that I'd never heard of it. I was referred to an EP who introduced me to rhythm control drugs which worked vey well indeed. Went on for another couple of years, then had an ablation to get off the drugs. The ablation worked totally and I came off the drugs, except anticoagulants which my EP had and has me on forever, even with a CHADS score of 0 (till I hit 65 last year).

I still don't have AF as such, or not much, but I now have masses of ectopics and again my EP has prescribed different rhythm control drugs which are working 95%. No ablation on offer whilst these are working.

Generally speaking, once I've been able to get to the EP and get a solution, life has been normal and I've been able to do anything, farming, golf, walking, no problem. At times when I've tried to cope and get treatment without my EP, life has been dreadful.

Koll

[Rellim296]

Like Koll, mine started with occasional tachycardia when I was in my early forties (1990). I wasn't prescribed any medication until 2002 when I need blood pressure control. I had a day in A & E in 2010. Tests followed and I had an ablation early in 2011. Was diagnosed with AF during the procedure and started to take flecainide, which worked well for a couple of years but AF started to creep in occasionally and still does, although I've had two further ablations. I'm 70 next month, have been on an anticoagulant for 3 years, take atenolol and losartan and use flecainide as a pill in the pocket.

[Hidden]

Diagnosed over 23 years ago. I seem to have been mainly persistent and highly symptomatic from the start . By persistent I mean that the AF did not disappear without intervention i.e. IV drugs or DCCV .

However despite 3 ablations ( and offer of a 4th ) plus multiple DCCV s I still get episodes about every 6/8 months which require cardioversion. I can cope with that .

I have gone as long as 4/5 years AF free following a DCCV supported by the drug Disopyramide.

We are all so different as you may have gathered .

Sandra

[rothwell in reply to Hidden]

Thank you..so have ypou been taking anticoagulants for 23 years and if so, which one?

[Hidden in reply to rothwell]

I've been taking warfarin for over 13 years. Prior to that just aspirin, which we now know of course is pretty useless for AF. ( just had my 72nd birthday )

[Omniscient1]

I had a knee op in 2003 under a general anaesthetic, no one saw anything then, in 2009 I went to the Drs for something - cant remember what - and he used a stethoscope to give me a once over and said he thought I should get my heart rate checked as it wasn't quite right.

And here I am. I am in permanent AF, no outward symptoms (so far )

[rothwell in reply to Omniscient1]

Thank you for respondi ..but how do you know you are in permanent af if you have no symptoms and do you take medication?

[Omniscient1 in reply to rothwell]

Hi

If I take my own pulse, or listen to my own heart beat its obvious, my heart does the cha cha cha, or is it the foxtrot - slow, slow, quick, quick, slow. I don't have any other symptoms that the people who have periodic AF get, I think we permanent folk have it slightly easier once you get over the fact that you have it.

[rothwell in reply to Omniscient1]

So are they not ,symptoms'? Are you bot in afib when thatbis happening? What other symptoms would you expect? Do you take medications?

[Omniscient1 in reply to rothwell]

Hi

I am in AF all the time. But I can't detect it unless I listen to my heart. So, I have been on clopidogrel, and bisoprolol, but I saw a specialist at a stroke clinic who advised i may as well come off them. I had the common beta-blocker issues of tiredness etc. My Chads score is 0 at the moment. I don't experience chest pains or palpitations etc that i am conscious of. As I say I am lucky, I don't experience the pain and trauma that people who have recurring/remitting AF suffer from and from reading here that is a common point of view from with 'permanent' sufferers.

Sadly however, as it took a while for it to get noticed I am not likely (not at all) to get any intervention to get me back to NSR - like a cardioverson or ablation.

[Hidden]

It's difficult to say when I started to have arrythmia and PAF as this would have been disguised by a high heart rate during running, as my heart rate monitor wasn't capable of recording and printing out my trace and, it had a 5 second sample time. I've probably had it for 20 to 30 years. It has not become permanent. However, slight flutter does show up on an ECG now and may have contributed to the unexplained stroke that I had this year despite a healthy lifestyle; I wasn't taking an anticoagulant at the time.

[Thomas45]

I've had it for nearly 21 years, indiagnosed for 10, due to me not going to the doctors about it. When it started it was 2 or 3 times a year. When it was 5 - 15 times a month I mentioned it to a GP she told me to go to A&E next time it happened, which I did. Kept in overnight, put on Amiodarone which reacted badly for me - arm and chest pains and feelings of panic. I gave up driving on motorways and then driving beyond a few miles. The NHS in my area was lacking 10 years ago and it took 10 months before I saw a heart specialist who changed my drug to Flecainide, after about three 3-monthly visits to him we found the right dose, 150gms x2 a day. I rarely get episodes now. The last about 3 months ago was due to dehydration. I avoid two foods which I believe to be triggers, in my case - coffee (not caffeine), and soya, except in the case of soya in small amounts, such as lecithin. I normally have 0-2 episdodes a year. I've been on warfarin for about 3 and a half years, except for 12 days when I was on Rivaroxaban, but had very bad side effects. Prior to that I was on aspirin. The NHS in my area is now superb, based on my experience.

[rothwell in reply to Thomas45]

Wow a long time Thomas...you're one of the longest ..are you OK with the warfarin? Thank you..it's heartening to know that it is survivable for so long.

[Thomas45 in reply to rothwell]

No problems with the Warfarin. At first my INR wouldn't stabilise and I had a painful rash on both arms. I was put on Rivaroxaban but had adverse reactions, so I asked to asked to be put back on warfarin. I bought my own testing machine, which I have for peace of mind. Every so often I email my reading to the nurse. The rash was caused by another medication.

[netpi]

I was diagnosed in the 80's and thankfully have not yet transitioned into persistent or permanent - I typically get a couple of attacks per year, self terminating within an hour, always in the spring and or fall - this year, touch wood, I have not had any attacks and I attribute that, perhaps there is no connection, to an improved diet along with magnesium and CoQ10 to name a few of the supplements I take - it would appear my case if vagally mediated with the result being gastric distress increases the odds of an attack but again, changes in my diet, most notably the daily inclusion of avocados, seems to have addressed long standing digestive issues I had and in turn, I believe this has led to decreased AF activity - of course all this may be circumstantial and unrelated but clearly, some changes have occurred in my system while the only other changes have been in diet and supplementation

[jeanjeannie50]

I was first diagnosed with AF 11 years ago in 2005, but I believe I'd had it for many years before then. My heart used to really hammer in my chest if I walked up hills and I thought everyone's did that. It wasn't until after having my first ablation when it stopped doing it, that I realised it hadn't been normal.

I also used to get tired a lot quicker than anyone else when doing long distance walking, cycling or running cross country (hashing), I wondered why I was always last when I trained a much as anyone else. Now I know! To be honest I think it all started in my late thirties early forties, am 65 now.

Jean

[Oldcarol in reply to jeanjeannie50]

It is amazing isn't it? 2

When u have afib and all the flopping around in your chest and it stops and u never realized before how quiet your heart really is. I had a quick lesson- episodes quick, frequent, hard, meds didn't help. Ablation within 5 months and now there are occasions of feeling skipped beats, but mostly so quiet I wonder if I make myself feel the beats. I felt so traumatized when it first happened and I can't help but think about everything I do causing it to happen again.

Thanks for listening.

[RichMert]

4 years before diagnosis. Was bordering on persistent just prior to second ablation

[Buffafly]

I was diagnosed about 16 years ago but like others had strange symptoms sometimes before - since I had measles very badly aged 12 in fact, ectopics, dizzy spells, racing heart, breathlessness, chest pains, the lot! My daughter aged 35 has been having episodes of tachycardia but as I'm more aware of these things now I'm hoping she might get a diagnosis earlier. I never thought of my heart having a problem until I had to go to A&E!

[julesp]

I started off on paroxsymal af then over two year from 2014 until this year graduated up to permanent af. I had an ablation in July and since August have been on deronadrone to keep episodes at bay.

[DariaE in reply to julesp]

Hi! How has your body reacted to dronedarone? Any side effects? Have you had any episodes after being on this drug?

[julesp in reply to DariaE]

Hi I've not had any side effects as all blood tests been clear. Sometimes it feels like I'm going to flip into af but I don't or I can't really feel it as I was very I'll when in af before ablation and being put on the deronadrone. I got breathless really bad palpitations but so far nothing. I still get out of breath but I've a couple of other heart problems which make this happen but so far no full on af x

[DariaE in reply to julesp]

Thanks for replying. I am new on dronedarone and it makes me a bit tired, and anxious.

[julesp in reply to DariaE]

I'm on 10mg bisoprolol split into two 5mg doses twice a day as I am always tired and it does lower my heart rate down to 44-50. The cardiologist also said the deronadrone could lower my heart rate as well so they keeping an eye to make sure it doesn't drop too low. I can cope with the tiredness but not the permanent af so happily take the deronadrone x

[JacqRobs]

I was diagnosed last year aged 38 and have had three or four episodes of AF which are very symptomatic since then. With hindsight, I've had it longer than that, though - I reckon about 8 years, but it was never picked up. Not currently medicated and have got my "normal life" back. Am just taking better care of myself (diet etc). I get ectopics when I am run down or have a bug of some sort and they are.my warning that AF is imminent and so to slow down. I am in Durham and wasn't given the option of seeing an EP but I rang Stephen Lord at the Freeman and saw him privately, just once, to get more info. He was excellent - I would highly recommend!

[rothwell in reply to JacqRobs]

Thank you for that info.

[MissDheartbeat in reply to JacqRobs]

That sounds a bit like me! I'm only 39 and in Hyde nr Manchester and was diagnosed a couple of months ago with paroxysmal AF treatment is bisopropol beta blockers only 1.25mg daily.

Heart rate was detected at 200+ bpm on 24hr monitor for over 2hrs. however I'd had 3 ECGS all clear...ultrasound was all ok too. I reckon I've had it undiagnosed over 4yrs but episodes have significantly increased. my old GP said he thought might've had arrhythmia about 10yrs ago but I never followed it up at the time! My cardiologist iso very. good and said bb can go up to 10mg but if heart still not happy I would be reffered to Wythenshawe specialist heart & lung dept.

My husband is from Durham 'Jaqrob' and I know freeman very well.

[Maxicono]

The future of ablation are stem cells they take sample of your heart tissue then create stem cells that they going to inject in your heart its called biological Peacemaker will repair the fibrosis in the chamber and it will regulate the speed of your heart Amazing thecnology !!!

I think they perform this operations this days but its experimental procedure and for rare and desperate cases.

I hope I'll get there without ablation at the moment on bisoprolol 3.75

as ablation is a big question mark and should be performed only if nothing else is possible apart off course amiodorone that destroy your body.

Since 2014 I got a 130 rb for few minutes the other day than take flecainide 2 x but not great results the amazing result is being when I took the Magnesium Glicinate ( Pure brand ) my heart went from 85 lie down in the bed to 55 !!! My best suggest for you my friend is stay clean of bad food , don't drink alcohol , start to take magnesium glicinate make sure is branded Pure !!! In blue letters that stuff will help you to relax your heart and your intear system .....now and then mix a spoon of honey with a table spoon of apple cider vinegar and hot water it will clean your system from all sort of bad things .

Keep clean your system it will pay you off try to keep it clean as much as possible .....good luck if you need any info send me a mail I'm here to help

[MissDheartbeat in reply to Maxicono]

I too have read a lot about magnesium supplements but advise to take 'non-oral' form as better to use oil or lotion on skin to absorb. I'm looking into this too.