Paroxysmal AF

[souljacs4]

Does paroxysmal AFIB get worse over time if so over what sort of time scale.

[Beancounter Volunteer]

Hi Souljacs, the answer is how long is a length of string I suspect different in everyone.

Will it get worse? probably but over what timescale it varies considerably, but ablation is easier and more effective the earlier you have it

Be well

Ian

[souljacs4 in reply to Beancounter]

Thanks Ian I have been looking into ablation but don't feel as if I have reached that point yet. just trying to find out what my options are.

[Hidden in reply to souljacs4]

Like you I didn't feel I was ready for the ablation, I had one 8 weeks ago and am feeling pretty damn fine. In Australia they recommend you do not put it off because you run the risk of going too far the other side.

Weigh up the pros and cons but remember it does get worse never better.

Hope you feel better soon.

[LaurenNat1 in reply to Beancounter]

Hi Beancounter, I was diagnosed with PAF two years ago whilst in A&E for something unrelated. I was not aware of it. I was prescribed aspirin. No one has ever explained it to me. All I seem to get is a feeling that my heart beat has gone haywire for about 20 seconds and then settles. Is this PAF?

Thanks.

[Beancounter Volunteer in reply to LaurenNat1]

Hi LaurenNat

Is it PAF? I have no idea only an ECG can usually confirm whether or not it is but it's quite important that you find out as if you do have PAF then the risk of stroke is high and you need to be anti-coagulated (depending on how old you are)

I would suggest asking you doctor to refer you to an electrophysiologist, and they are likely to fit a 7 day halter or similar to try and catch these haywire beats so they can find out what they are and what is causing them

Be well

Ian

[LaurenNat1 in reply to Beancounter]

Oh dear think I sent an unfinished reply! Will talk to my arrythmia nurse who I see for another problem and will do a chads score. Thank you.

[BobD Volunteer]

The short answer is that AF ALWAYS progresses. The experts will say that AF begets AF so the more you have the more you will. Time scale is impossible to predict but as Ian says early intervention by ablation is the best solution.

Bob

[souljacs4 in reply to BobD]

Thanks Bob I understand it will progress but as you have said there is no way of telling when so I just hope I will be one of the lucky ones and my AF will take the slow route. I have been looking in to ablation and I know by your posts you have been AF free for a number of years so that does give me some hope.

[rosyG]

I have seen figures somewhere suggestion 30% of PAF patients progress to persistent AF over a 5 year period.

I have also read somewhere that Vagal only AF never becomes persistent but of course often types of AF are mixed!!

I agree with the comments re diet and Magnesium- I am finding making sure enough Potassium in my diet is making a big difference so you can do things to get as heart healthy as possible.

Its best to stop all processed foods if possible too

And as has already been said everyone has different reasons for having AF so there are different possible solutions

[souljacs4 in reply to rosyG]

Hi Rosy I think my AF may be Vagel but am not really sure. I have quite a healthy diet and have just had some bloods done and have good potassium results this AF is such a mixed bag it seems the only thing we can do is try and look after our hearts as best we can

[rosyG in reply to souljacs4]

Souljacs vagal AF usually starts at night and is also related to change of position when you lie down- I always sleep at slightly on the left side ( but not pressing on the heart) and slightly upright and I find this helps a lot. Vagal Af can also be stimulated by swallowing as the Vagus nerve is involved- we saw a film at the patient's day in London last year- in the clinician's sessions- and it actually showed aF starting when they stimulated the Vagus nerve during a p Do you have any AF during the day?.

[Namreh in reply to rosyG]

I had this exact problem having a fib at night which was vagal stimulated I have had this for 30 years .well I had an ablation one week ago and have had no events since. It is early but so far I feel awesome. For year I could find no doctors to ever believe me. I will update

[souljacs4 in reply to Namreh]

That's interesting Namreh keep us posted

[souljacs4 in reply to rosyG]

Hi Rosy I am sure my AF is Vagel as it is nearly always after I have eaten

[Craggy]

My cardiologist told me that the number of people with AF increases in older age groups. This is not necessarily the same thing as AF getting worse for individual sufferers although I suspect it may for some.

I am at a relatively early stage as I was only diagnosed with PAF in September (although I have probably had it for a few years).

Prescribed drugs did not help and things actually got worse after I started taking them. I have decided to try to fight PAF by drastically changing my life style and diet (alongside the drugs) whilst maintaining a strong mental attitude.

My main concern is that an ablation may become an automatic option once you start to see certain specialists and I am not yet convinced that this is the answer for me. It is a case of weighing up the current discomfort against the potential complications of the procedure. Also, who knows what modern research will discover in the near future. Things will need to get a lot worse for me before I reconsider. I urge you to do your own research and make a personal assessment.

I have just returned from a holiday abroad. Before I went I had a period of nearly four weeks without an episode (a record for me) but whilst away I had three episodes in one week (no alcohol involved). I would love to know why. Was it increased stress, change of diet or more exercise? OR was it because I stopped taking my magnesium supplement whilst away???

[Crab in reply to Craggy]

I find jetlag gets me when OS and dehydration combined

[Hidden in reply to Craggy]

I'd guess it's just the act of flying, going on holiday, the change. Stress but nice stress.

[souljacs4]

Its the lack of data on AF as a whole I find so frustrating I will search for Info on magnesium that sounds really interesting can I ask if you take it if so what sort of dose would. I need I do eat well have never smoked dont drink and love walking. my mum had AF so I dont now if that is a factor in my case I really want to be proactive concerning my health but just seem to hit a brick wall with AF.

[souljacs4]

I totally agree with you AF is a very personal condition no size fits all thats for sure. I am not convinced that the meds have the desired effect for most of us maybe a stop gap leading to ablation. and as you say I need to do a lot more research before making such important choices and I really do understand your frustration as to what caused your latest episode it just feels sometimes what ever you do back it comes but I like you will try and have a healthy life style.

[souljacs4]

Thank you for the link I will look into that also for the Quote. Thomas Edison was a wise man. My dad would always say he belived there was a cure for everthing in nature .

[Hidden]

I was having AF sometimes which was noticed when I was 45. But I reckon it started years before that. By the time I was 55 it was persistent, symptomatic and debilitating. Over that 10+ years it didn't gradually get worse in a straight line, it accelerated. So it only really became VERY noticeable (although I didn't know what it was and didn't mention it to the doctor!) till I was 52/53, then it took off.

In the last few months it went from being a nuisance to not being able to stand up much.

Koll

[Mamamarilyn]

The pros and cons of ablation are often debated on this site. I guess if ablation was a one-off procedure, I wouldn't be so alarmed but it seems that for many people this is not the case. We are talking heart surgery here not just a quick fix as an outpatient.

I'm with Craggy here....things would have to get a lot worse before I would consider ablation (I have PAF). Maybe I'm fortunate in having a high tolerance of medication generally but, quite apart from the procedure itself, a general anaesthetic can b....r up the system big-time!

[Rellim296 in reply to Mamamarilyn]

I think people who haven't had an ablation find it a scarier thing than those who have had one. It is scary of course, meddling with your heart (and general system with a GA) as you say Mamamarilyn and that's one reason why EPs tend to be cautious and do too little in the hope it will be sufficient rather than go a bit too far.

Drugs meddle with you too and I am glad to be living without flecainide. I wish I had had my second ablation earlier than I did.

[Mamamarilyn in reply to Rellim296]

Thanks for your input Rellim. I agree with you that meds can mess with system too!

[Rellim296 in reply to Mamamarilyn]

It's a matter of finding what you feel is the least harmful way forward and hindsight may be the best guide!

[SRMGrandma Volunteer]

It will often, but not always get worse over time. I know people who decades later have never had more than the episode that caused their original diagnosis. I also know people for whom aggressive lifestyle changes have made the condition regress and go dormant. My EP has a practice full of highly motivated individuals for whom lifestyle changes have made their disease regress and become dormant. My AF has regressed significantly with aggressive lifestyle changes. Most papers that I read state that in women about 30% of the time, paroxysmal AF will progress to being persistent. This is most likely in the first several years of the disease. I've had AF for 12 years and have been told by 2 different specialists that it is highly unlikely at this point that it will ever become persistent. Though the one non-modifiable factor that does cause it to get worse is age. But by making lifestyle changes you can lower your biological age and still be ahead of the game. Many cardiologists and electrophysiologists are now treating aggressively with the "food is the medicine" approach for those who are willing to make changes.

[Mamamarilyn in reply to SRMGrandma]

Hi Grandma, I know that you have mentioned the eating habits you have adopted before but I can't remember what you do! Do you follow a specific diet? Could you re-inform me , please? Thanks! I really believe this is the way forward in the treatment not only of AF but a load of other conditions too.

[SRMGrandma Volunteer in reply to Mamamarilyn]

Hi Mamamarilyn,

I eat a plant based diet, with no processed foods, minimal sugar, minimal meat (maybe 2-3 ounces/week or more often none) and no dairy. And I completely agree with you! Be well!

[Mar1lyn in reply to SRMGrandma]

Hi mamaM - what about chocolate, alcohol in moderation, sourdough? Any at all?

[MickN in reply to SRMGrandma]

SRMGrandma

Was wondering how can a balanced diet be achieved on plant based foods only, I am already losing weight I do not need (mainly muscle) as I can no longer really exercise with this AF.

I have been to a nutritionist, and think along with supplements have a pretty good balanced diet, to include meat and fish lots of fruit and veg.

No rubbish either, cut out all cakes biscuits etc, chocolate a little but always dark minimum 85% cocoa.

Lastly but not leaset and regrettably no alcohol, bummer.

[MickN in reply to MickN]

note comment on weight should of been "DO NOT need to lose" my weight is fine at 12" 4'

[iris1205]

Purely personal choice, hopefully driven by good research! I did everything "natural" possible outside of joining and ashram.... and I took too much responsibility as if it was my fault.

In my case, with my conditions, I wish I'd done the ablation sooner. I was told I had total chaos in my heart the first time the doctor went in.. it lessened with each ablation, though I seem to be someone who regenerates those rogue impulses rapidly.

Two reasons I hesitated, I was told by two cardiologists definitively that AF does NOT always progress. Which I have acquaintances who are living this situation. Though I do believe once one see's a progression it is best to act! Your own choice as to how but ACT!

Second reason I misunderstood during my very first research into the concept of persistent AF. I assumed everyone's AF was rapid and of long duration. So I allowed myself to stay at home with AF episodes ranging between 150-220 bpm lasting 5-12 hours. I'd said to myself "if others can live with this persistently then I should just zip it up! When the episodes became weekly then nearly daily... it appeared to me the ablation was the only solution. Particularly since the Flecainide and Metoprolol stopped working.

What I so appreciate about the fellow AFers here is we are so aware of how little most doctors understand of our situation, and that between us we each have such different experiences. Thank goodness we've all found the support we need at the moments we need.

Best wishes to all of you - Annie

[Hidden]

I am definitely in the camp of postponing an ablation as long as is practical, IF the Cardio/EP are happy and you have stabilised the condition…in my case with Flecainide since last April.

Technical improvements in the procedure are constant and for certain types of AF (possibly just where the vagal nerve is the culprit) I expect they will develop a non-invasive non-drug solution …. I read somewhere there is a handheld device on trial that can now be used by the sufferer for migraines.

Also when you know it's only down to you and your lifestyle it is a more effective incentive to actually lead a more sustainable life…..which in the long run etc etc… I have dropped 50%+ sugar and gluten in my diet, found out I am low on Mg and CoQ10, increased my exercise routines and stopped doing 12 hours+ work days!

All that said, if the AF restarts and gets worse…..I will be the first in the ablation queue!

[Hidden]

G'day bigleg,

Interesting ... particularly your last sentence, 3rd paragraph re processed foods. I most certainly agree. 6 months after being diagnosed with AF I identified the onset of an AF event with issues with foods and the gut and digestive system. Long story short, I consulted a nutritionist who introduced me to a very high dose probiotic powder for a short period, going gluten free, FODMAPS diet and as much as possible going processed foods free. Equally, if I followed the conventional health wisdom of eating 5 or 7 fruit and veg a day I'd be an 'AF cot case'. Now, some 4 and half years after this consultation I cannot now recall my last AF event. I would never consider myself cured of AF but I sure as hell am in control of my life. Good post.

John

[Thomps95]

I'm on flecenaide to avoid pre-AF symptoms at night, such as transient palpitations lasting only a matter of seconds, and also occasional AF (3-4 times per year) each lasting about 5-10 hours. Have not had any AF in about 8 months on flecenaide, but occasionally do get the night time palpitations if I've had alcohol and a large meal (especially sugary desserts). I'm considering ablation too, but want to wait until they've perfected the technique - given my situation I think I can wait another 5 years at least.

[souljacs4]

Hope you stay well a lot can happen in medicine in five years who know's there may be something new by then.

[Hidden]

Hello bigleg,

Just briefly .... I'll have to get back in more detail re the comparisons, work is tying me up at the moment. However, the website I used was called Shepherd Works, based in Box Hill, Melbourne, which as I understand it was the original source of the 'diet'. It was the source I investigated and applied to my food intake - but I didn't follow it strictly.

John