?stop being a junkie

[Musetta]

Free world, free speech - just a couple of "minor: things - quote "as far as I'm concerned my AF is mild because I make it so" unquote - um, firstly, what to you class as mild AF and secondly, how do you make it so? I'm curious old buzzard - Cheers

[Tobw]

By and large, I'd say my AF qualifies as "mild" compared to many others. I believe this because, typically, I spent about 90%, probably more actually, of my time in sinus rhythm and my heart rate is around 80/90bpm when I do have an episode, with the result that, apart from some slight dizziness occasionally, I'm able to carry out my life as normal up to now.

Is this because I'm keeping my condition under control or solely because I'm luckier than other people? As always, the answer, surely, lies somewhere between the two extremes. For example, while I've changed my diet and virtually become tea total (just two alcoholic drinks in 2015) in recent years, reading this site tells me that there are people around who have taken more measures to try and control their condition than me and yet their AF appears to impinge on their lives far more than it does in my case.

So, while I've taken steps that, I believe, have helped to make AF not as influential within my life as it may have been, fundamentally, I can live as I do with the condition because I have the relative good fortune of having a "version" of AF that does not effect me as much as many other people who suffer with it.

I firmly agree with the view that everyone's AF is unique to them and so there are some people who are unfortunate enough to have no other option than to "keep on taking the tablets", no matter how many, well intentioned I accept, entreaties they receive telling them their life could be so much better if only they took this action or that type of food.

[Runcrans]

So I've always exercised always eaten a good diet and don't drink yet in 2014 af came and impacted on my life greatly , I personally think its look of the draw and some may be lucky with mild af for now but like many say on here it will advance into something more as it did for me and many more on here ,these are purely my opinions 😊 be well cheers Paul.

[Therealsue]

Was my AF mild? Well some might think it so. It was paroxysmal. My heart rate didn't go above 100 even when in episodes. Did it impact on my life? well yes, because it ruined my running and running was - and still is - a massive part of my life. When I wasn't running, other than struggling up and down stairs, I suppose my AF wasn't a huge impact and some might therefore nothing to make a fuss about. I tried every know trick to man to try and get my heart back into NSR and stop the attacks. I had a healthy diet, didn't drink, tried all the supplements that I read about that mentioned heart in the list of benefits. Did any of it help? - no! In the end an ablation nearly two years ago left me free of AF and long may it continue. We're all different and experience AF differently too. But I wouldn't say anything I did changed it's course one way or the other. Stay well all.

[Sarah57 in reply to Therealsue]

Hey thanks. You have given me hope as just like you I have tried to make "my body is a temple" but what was " mild" AF is now daily and horrible and waiting an ablation that I hope will it sort out.

Yes we are certainly all different , as are our symptoms, and how we cope with them, therefore no one should ever judge others I personally feel.

[Rellim296]

I consider my AF to have been mild as it didn't interfere much with my ability to function. I've never suffered from breathlessness. I didn't run when in AF or go upstairs two at a time but could carry on quite well. It always resolved itself sooner or later in the day. The impact of medication on one's life can be far more significant than the AF itself.

When we were 3000 hours into 2013, I reckoned I had had AF for 30 of those hours and I found it hugely annoying that I was having to watch everything I ate (Warfarin)and the times that I ate (Flecainide) for something that I felt wasn't there most of the time. The forum has enlightened me in many ways and I understand now that if you get AF you have AF - it's there even when it isn't happening.

[jennydog]

I consider that an episode of AF is mild if I can continue with whatever I am doing. It is severe if I have to lie down or take to my bed in an attempt to sleep it off.

Stress apart, I cannot identify a trigger. I have to accept whatever happens. Since my ablation the episodes have been mild and controlled by flecainide as a pip.

[JonathanPittsCrick]

As someone who treats a lot of people with AF it is clear to me that some people are only mildly affected by it, in terms of symptoms (breathlessness, palpitation etc.). There seem to be 4 reasons:

1) The AF doesn't go much faster than normal (sinus) rhythm.

2) The AF is not so irregular - i.e. there is not much difference between the faster and slower beats.

3) There is nothing else much wrong with the heart - e.g. no heart "failure" or severe valve disease.

4) The person understands what is going on and is not unduly worried about it.

BUT... it's terribly important to realise that mild AF is JUST AS DANGEROUS in terms of the risk of blood clots so this has to be assessed quite separately and anticoagulants taken if indicated by the risk score (CHADS or CHADSvasc.) based on age, blood pressure etc.

[djroute66 in reply to JonathanPittsCrick]

hi Jonathan

i think i qualify for 1.2.and 3 unfortunately i wish i could say number 4 as well. my concern is i am on a pip and for most works well for me. but i still cant get my head around chad scoring which i am zero on. as surely af is af how can i be at lesser risk of blood clots than someone with a score of 1,2 or 3 ? and indeed if theres no difference what is the point of even mentioning chad score

[JonathanPittsCrick in reply to djroute66]

Well I'm afraid you're quite right to be puzzled - the answer is we don't know why. It's just what has been found by looking at the statistical occurrence of strokes in people with AF.

For young people with no other cardiovascular disease it hardly ever happens. This means that over a year or more the very small risk of life-threatening bleeding from taking anticoagulants is actually worse than the risk of having a stroke if you don't take them. So obviously it's not worth taking anticoagulants long term.

Older people and those with high blood and heart disease who are in AF have a higher risk of stroke if they don't take anticoagulants so if you add up the risk factors (the CHADS score) and it's more than 1 they probably have a higher risk from clots / stroke than they do from the bleeding risk of anticoagulation – so then it IS worth taking anticoagulation.

Just one risk factor (CHADS score=1) is borderline and there is no solid evidence of benefit though most "expert groups" recommend starting anticoagulation unless there is some problem with it. Unfortunately, with large profits being made from the new oral anticoagulants (NOACs) there is a lot of pressure on the "expert groups" NOT to do the obvious trial comparing anticoagulation with placebo for CHADS=1 AF patients. So we may never get evidence either way.

The important thing to understand is that there is no zero-risk option but the risks are very low indeed if your CHADS score is zero.

[djroute66 in reply to JonathanPittsCrick]

Thank you Jonathan for your very detailed answer

[BobD Volunteer]

Great post Jonathan (how are you these days by the way?)

Point 4 I feel is the crux of the matter. We all of us have different levels of tolerance, not just of pain but of all body functions. Some people for example can run high temperatures and carry on as normal whilst other take to their beds at the first sign of a cold. In the same way many AF sufferers adapt to having it very quickly and are able to live with it whilst others are so affected that they need to go to hospital. Two people with the same level of symptoms therefore will have two different reactions so what is the difference. What is in the mind of course and believe me when I say that this is no criticism of either party. To me it seems as wrong to go out running when in AF as it is to curl up in a ball. The fact is none of us know how another feels so how do we know what mild is to each of us. Knowledge is power as I have been saying since this forum started. Understanding is all.

Bob

[Barb1]

My AF is inherited and was triggered into action by a virus that I caught whilst working in Africa. This AF caused my heart failure and I hate it when people look at me as I am now (very overweight) and assume I have heart troubles because of my lifestyle. So for someone to believe that I could also control my AF is ridiculous. That someone should try living in my shoes.

[Hidden]

It looks like my AF is inherited too (my cousin has it as well).

I call my AF mild when I can carry on when I get it. I'm lucky, I get it maybe twice a year and it's usually associated with stress. However it is fast (up to 170bpm). I'm trying to lose weight and lead a healthier lifestyle, and I take magnesium and CoQ10.

I don't think I'm 'making it mild' at all, though. I just do what I can, and even if it isn't helping at least I feel I'm doing something, which is better than feeling helpless.

[Sarah57 in reply to Hidden]

Yes I inherited this from my dear old Mum and her family line. My sister has it just a little at the moment too. Brothers seem ok.

[souljacs4 in reply to Sarah57]

My mum had it too

[Finvola]

My episodes of AF were mild in their duration, usually reverting to NSR in about 2 to 3 hours but their impact on my life was anything but mild. During attacks I was extremely weak and breathless with a heart rate usually of 160 to 200 bpm accompanied by diarrhea and gastric misery and sometimes the 20 foot journey to the bathroom was a feat of endurance.

No amount of dietary and lifestyle changes made any difference - AF did its own thing regardless. Then, 18 months ago, I was prescribed Flecainide. sInce then I have got my life back together and have had no AF at all. I don't like taking it - who would - but I look upon it as the lesser of two evils at the moment.

I'm sure there are many sufferers like me, for whom drugs like Flecainide are a lifeline to some degree of normal life. We are fortunate to be able to access information on these drugs, discuss them with medical experts and decide for ourselves the best route for us in coping with this trying condition.

[checkmypulse]

I also consider I had 'mild AF'. My nsr around normally 60bpm, during AFIB 85-105. During early days of AFIB it made me light headed and woozy, energy levels dropped, tired. After 12-18 months it didn't effect me so much, they 'came' more often (progressive?) lasting 24 to 72 hours and a pattern developed. I came to expect them every 7-10 days. But was my body 'getting used to them?' I found I was not so tired and I could function pretty well normally. Eventually I noted my pulse would begin to drop to around 75ish, still irregular, but on most of these occasions this would indicate the AFIB was on the way out. The Beta blocker, 1.25mg Biso didn't help much and after trying 2.5mg reverted to the smaller dose as 'pill in pocket' as they slowed HR to much when in NSR. I agree with Bob, knowledge is the key.

I use the words had/would/didn't. Hope that's not tempting fate as I am only 10 days since PVI Ablation. Early days I know, so far so good .

[scotcitz]

One of my favourite threads on this forum, thanks all for sharing. I also 'inherited' AF and I try to do what I can to help the odds -- don't drink much at all, don't smoke, don't do drugs, don't do extreme exercise (although to be fair I wouldn't do any of these things anyway so not much credit there). What drives me nuts is trying to keep the weight down, it's always a struggle and yes I do feel judged by the medical profession that my weight is not in the perfect BMI range ... And i agree with the previous poster that it is very very frustrating for people to make assumptions that because you are not at the same weight as your 20s that you are 'causing' your problem as opposed to the fact that you inherited (from my Mum, who had a lot of strokes with it).

[didunth]

I started another thread earlier, but this and the other thread on this subject seem relevant. To a large extent my symptoms are either non-existent or minor. I was having the normal reaction to physical stress i.e. I was getting out of breath and tired, but for a stimulus rather less than I could normally handle without difficulty. If I were trying to keep up with a professional peloton, I would expect to become a sweaty panting heap, and this has always been the case and I am fairly used to the feeling, I was first worried when this was happening when riding with groups which I used to be able to drop without problem.

However all this means that athletes may precisely because their experience even normally (dyspnoea, high pulse rate etc) be rather more used to the symptoms of AF than others.

[Kodaska]

To say "my AF is mild because I make it so" seems a bit delusional, unless the person has true mind-over-body control. If so, I want to know how he does it.

[Musetta in reply to Kodaska]

Me too...

[Hidden in reply to Kodaska]

You could have tried asking I suppose. I'm very sad to have lost a burgeoning friendship David.

[Hidden]

Kodaska, I agree with you. I am very surprised at some of the statements posted on here? To generalise on how the condition of AF effects other individuals- with only one's own experience to base this knowledge on- is hardly- knowledge is powerful, understanding is all?

It takes about 12 years to qualify as an EP... to try to understand the complexities of the hearts electrics?

AF can just disappear for long periods -without any medication or changes in lifestyle?

I do not subscribe to the idea that we are all the same, but with different tolerance levels?

There must be so many complex reasons why this starts, continues or ends?

So many reasons and other factors that influence the severity?

So many ideas on the control ,and hopefully ,management of this medical condition?

The Medical progress, the use of pacemakers and new medication has been a game changer to millions?

We are all different.... Different strokes for different folks?

[Hidden in reply to Hidden]

Like your post Sheppey....very valid points !

Sandra

[Runcrans]

On summary then for someone to say that there af is mild because they make it so is utter bxxxxxks 😊

[Musetta in reply to Runcrans]

Agreed...

[Hidden]

I hadn't realised that another thread had sprung up from the original. You all know very well who made the original comment about their AF being mild because they made it so. I did think that some might understand the frustration that lead to that comment. It would seem that I am wrong and I am saddened to find that comments have been made here that could not be made on the original post.