"Mild" AF, response to Musetta

"firstly, what to you class as mild AF and secondly, how do you make it so?"

This is a link to the original posting so please go back there if it's still active to continue the discussion... healthunlocked.com/afassoci...

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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.

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  • Hi Jonathon,

    I haven't come across your posts on here before - maybe I've been careless in my trawling through. At any rate you seem to be a healthcare professional, judging from the nature of your comments and so I personally (even though my paroxysmal AF is totally well controlled now by diet and medication, as is my blood pressure) welcome your input, which, added to that from lay persons/sufferers, notably BobD (and others), and other healthcare professionals must do so much to support those who are having a really rough time or who need their knowledge enhanced.

    John

  • Thanks John - yes, I'm a cardiologist with a strong interest in "patient power". I have found over many years that the more people understand their health problems the better they are able to live with them.

  • Jonathon,

    I must say that I am a beneficiary of this forum and have been for 6 years now ... and of course, in terms of 'patient power' ... knowledge is power. That is exactly what I've achieved from listening to advice/experiences on here. I've learned what AF is, (yep, at the time I had no idea of what AF was, I'd never heard of it, when diagnosed aged 65 - for goodness sake (when I look back) I had led a pretty healthy life, only had surgery once for the removal and tidy up following a tear of my right knee cartilage, other hospital visits were as a result of DIY mishaps. That's was it.

    The day AF hit it was only the behaviour of my BP that indicated a potential problem. I woke up as usual, but felt like I was going down with flu. As the day wore on something felt strange in my chest. Decided to monitor my BP with my home device - which promptly went ballistic, irregular readings, error messages galore, replaced batteries no difference BUT the trend line was a falling BP. In those days my regular BP was around 136/80 ish - this day it went down and down to 90/50. I bit the bullet - this was my Apollo 13 moment and I rang my incredible GP - opening words from me were along the lines of' 'Houston, we have a problem'. He saw me immediately (I just lived around the corner from surgery) he did all his magic bits and rang the hospital and got me in instantly .... and so within 9 hours of onset I was in A & E diagnosed and treatment started then placed in the care of the consultant for the next 6 days- continuous.

    It is that speed and accuracy of diagnosis that has been so vital in me having no problems now 6 years later. I was kept in hospital for 6 days of thorough tests, sent home to the care of my GP. Did I get any warnings, all I can associate with AF is 2 and half years of palpitations. I can't ever forget them, weird, like being kicked in the chest by a mule. Then a warm, glowing feeling all over the top of my head and then a feeling of going cold. Then I was normal - all in seconds. No fainting, no passing out, no variation in vision, absolutely nothing. In those days I worked shift work driving buses so by the time I got off shift to my GP for an ECG it had all passed and nothing had been picked up on ECG. This process happened time and time again over those 2 and half years.

    I discovered this forum (in those far off early days it was part of the Yahoo Groups) and my learning curve went vertical. That was when I learned from contributors to this forum about the vagal nerve. It appeared that my AF events were triggered by food and digestive issues. Long story short my GP had me checked out but nothing was found, I.E. IBS or Coeliac Disease so I went to a nutritionist. She stabilised my gut flora with probiotics, recommended a diet, got me to go gluten and wheat free, suggested I look at FODMAPS diet and bingo! Jackpot! My last recorded AF event now was April 2015, prior to that maybe between 1 and 3 hits of AF a year - short sharp hits, and that's it. I no longer work full time, I still hold my PCV licence, I have regular health checks to satisfy DVLA requirements and still drive a bus 3 days a week. Sure I've made lifestyle changes too, dropped my BP now to a regular resting BP of 123/70 ish .... BUT .... at the risk of being called cocky .... I have learned never, never ever trust this thing called AF. It is a mongrel, a bloody mongrel condition, its a hydra headed monster ... and never ever to be trusted. But now, this time, if it ever returns, I'm ready for it. Suitably empowered.

    Sorry about the length of this, didn't mean to ramble, but did mean to praise this forum and acknowledge the benefit of peoples experiences in helping me learn and understand this AF thingy. As you say, 'patient power' and so important.

    Nowadays I'm specifically interested in anticoagulation and follow stuff on that issue. I've twice had to come off Warfarin so that other medical conditions could be addressed, 1) a CT Scan and 2) more recently, and more dramatic, a partial knee replacement. No problems with coming off Warfarin, and thank goodness no problems with the knee.

    I'll shut up now !

    John

  • Good comment. However, the question was about the latter part of what you quoted. How does one make AF mild? It seems to me the condition pretty much does what it wants. But I'm aware that the mind can do all sorts of things, and I'm very curious if it's possible to control or reduce the severity of one's AF.

    If you look through my posts you'll find some background on an autoimmune disorder I acquired due to flecainide use. I'm discovering that attitude is affecting my symptoms, to the point where I'm consistently having days where I have minimal and sometimes no symptoms. I suspect a relationship between stress and the brain's immune system, just as there's a relationship with the body's immune system.

    If the heart's electrical system is affected by a person's stress, perhaps it is indeed possible for the mind to affect AF. Some evidence of this would be fascinating.

  • Yes the brain definitely affects the immune system and the way the heart behaves though we don't have too much control over this. What we can improve is how much attention the brain gives to symptoms and how much they limit our lives – and this is where understanding the way things work and what is actually safe/dangerous is so important.

  • Hi Jonathan

    I agree with all the above I wouldn't even know that I have AF, I am 58 fit for my age playing football three times a week have a resting heart beat of 42 and have had a ablation in 2013 which lasted 1 year, I came of everything as I had a CHADS score of 0 then in October 2015 had a mild tingle in my right hand which lasted around 5 seconds, I had my mobile phone in my hand at the time and dropped it, I picked it straight up off the floor and everything was ok had no other symptoms.

    Before this I had been using alternative therapy and my heat had gone back into NR the day before but I was a little concerned and went straight to the hospital, I had a MRI scan which came back normal and a ultrasound on my neck everything came back ok but they said I had had a TIA and have been put on to Apixaban which I hate but what is the alternative?

    It seems to me that everyone is treated the same I haven't got heart disease mine I believe is caused through sport but everyone seems to be sent down the same route.

  • Well a TIA on that scale wouldn't show up on a scan so I think they're right to be concerned - unless there's an alternative explanation for the hand symptoms. The most likely time to have an embolus (clot in the bloodstream) is soon after the AF stops so this would fit with the story.

    High level physical training and a slow pulse rate ARE risk factors for AF and even if the heart isn't diseased in any other way there is still an increased risk of stroke.

    Please see the discussion with Kodaska on the CHADS post. There's no easy answer...

  • Thank you for your advice i myself thought it was something to do with my heart going back nsr

    cheers Jonathan

  • Hi Jonathan

    I tend to regard my AF as 'mild' (apart from when in mid attack 😀). Maybe this is because it is paroxysmal? As mine is affected by what I eat and drink, avoiding these triggers helps although just one caffeinated coffee (given in error at a restaurant) triggered AF pretty quickly.

    I hate taking medication but at least being on Diltziem and Apixaban makes me feel safer, although despite reducing the effects of the events, it is currently not stopping them. Seeing my EP tomorrow to discuss where we go from here.

    NooNoo

  • Hi NooNoo, I would suggest asking your EP doc about "pill in the pocket" flecainide which you could take either when you get an attack or, even better, when you feel one might come on (as well as continuing the others).

  • Thanks for the advice Jonathan. That question is on my list.

  • Hi Jonathan,

    Thank for your informative,concise reply. Particularly your explanation re:anti coagulation - regardless of which type of AF (age and O Chads score considered) anti coagulation is a must.

    Cheers,

    Musetta

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