Hi all, apologies before I start for another longer post, but I wonder if I might put my own Afib interpretation across to you folks for your opinions. I find myself with a constant need for clarification to my own individual situation and feel a lot of the general advice is not necessarily relevant. The below is merely from what I’ve picked up from so many years of reading (as we all do!) and listening to the professionals I’ve met along the way.
So, I met an experienced and very well respected cardio in 2017 who summarised Afib to me as follows ; Certain incidents, conditions or experiences may trigger an initial Afib episode in some people. Just as examples, it may be a medical trigger, perhaps during or after an op, or through certain medication, or possibly it might be physical, postural, vagal stimulation (GERD?), maybe extreme exercise, possibly and probably most commonly over-indulgence (holiday heart!). It was then explained that once experienced, the management aspect of Afib is specifically set up toward reducing frequency of episodes or the severity of symptoms experienced within episodes. Interestingly, I remember him explaining that for some the occurrence of Afib may be quite isolated. Say for example, if a person’s initial Afib was triggered by an external influence and that particular influence was never repeated, it was reasonable to assume that a further episode might not occur. An example and one which I read about was where a person had a single episode following a hospitalised bout of pneumonia, and once recovered had never (knowingly I suppose!) experienced a further episode. Another were a person had a hiatal hernia (that had presumably stimulated the vagal nerve and triggered an episode(s) and that following a successful operation on the hernia had not experienced any further incidence of Afib. When & where Afib progressed, it was broadly down to repeated “triggers” causing recurrent and varied electrical misfiring and so the Afib frequency increases as the heart becomes more susceptible to misfiring (not exactly medical terminology – forgive me!). Examples of this I suppose, would be regular extreme exercisers / repeat binge-drinkers etc, or those with long-standing / chronic co-morbidities’ such as high blood pressure etc.
Now, where I have been interested particularly is where Afib progression can be “slowed”. Just as much as “Afib begats Afib”, lifestyle adjustments and behavioural changes have been shown to reduce episodes occurring. For example, if “holiday-heart” was experienced by an individual once per year (whilst on holiday!), this presumably would be a different scenario to if the same individual were to over-indulge every weekend! From this, I wonder if many sufferers have staved off their Afib progression simply by way of making lifestyle adjustments or necessary moderation. We read a lot of some individuals who have had Afib for decades and yet have experienced only infrequent episodes & I wonder if this might be the case for the majority of the millions of sufferers (particuarly those not officially diagnosed)? When I mentioned Afib to a friend recently, he casually stated that he always got episodes of “palpitations” over Xmas, this being his only period of over-indulgence. Even, the cardio suggested that when he’d once attempted to smoke a cigar (grandchild’s birth as I remember!) he too believed he’d experienced an isolated incidence.
Apologies for rambling on, I’m not sure if there’s actually a question I’m asking! Only, that I think that Afib, of itself, remains totally unique to each individual sufferer, and I think it’s most important that we each carefully analyse the more generalised advice (avoid coffee / don’t avoid coffee?!!) and take what is most relevant to our own circumstance. As always, this is only my own perspective and I am in no way medically qualified! I would really appreciate your views too! 🙂
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Jasper18
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For some it can be genetic as in if your heart is built a specific way then rogue signals may well develop.
For some it develops due to misshandling your own heart. Over exercise , over indulgence , over weight. We know that endureance athletes and fast jet pilots are dissproportionately likely to get AF than general population due to over working their hearts. We aslo know that binge drinking especially in young (teenagers etc) can produce events which may never be repeated if that activity is avoided. We know that life style changes can often reduce or even end AF events with weght loss being a primary example.
OK so far but we also know that we get "racing snakes" with exemplary life styles and diet who develop AF .
If you ever find the answer you could get very rich. 😂
Jasper, my mother had AF though it wasn't discovered until she was dying of cancer aged 60. My two sisters, myself and a brother all have it now too. I find it odd that 4 of us and my mum all had AF. Was it something to do with our heart structure as Bob has suggested or our diet? My dad grew every single one of our vegetables and living on a dairy farm we drank raw (unpasteurised) milk. Did our starting to eat foods that contained chemical additives eventually kick it off for us? None of us had AF, as far as we knew, until we were in our 50's or even later.
I put a post on this forum a while back asking whether traumatic events in our lives could have kicked our AF off . I was shocked at some of the distressing events members here had suffered, thought my experiences were bad, but no others suffered worse.
I think that by our discussing different ideas as to the cause could eventually find us the answer.
Hi Jean, it sounds so out of the ordinary for there to be such similarities in all your circumstances, your diet and for you all to be diagnosed over the age of 50. Perhaps you all having a similar genetic makeup led to you all developing Afib at a later age? I truly hope it wasn’t linked to traumatic events. I wonder if there’s been any studies into inherited Afib? It certainly highlights how very little commonality we see with Afib and how it affects each of us so very differently, very frustrating that there’s so much guesswork involved! Really appreciate your reply, hope you stay symptom free!
Hi Jean, snap I also had a privileged upbringing for me on a Yorkshire farm with a Jersey House cow - milk, cream & butter all raw. I still buy raw milk/cream/cheese.
In my opinion, dealing with the triggers is wrong. If we are at the edge of stability, then any, even small disturbance, can bring us out of balance. The question remains, what brings us to the brink of stability. This cause is the same for all of us, despite the beloved sentence: "We are all different!".
Hi, thanks for replying, that’s so perfectly put! I entirely agree, it seems there is perhaps more of a band aid approach to Afib, at least from what information I’ve read. I’m sure research is ongoing as to root causes, but you get the impression that long-term symptom management is the current doctrine, rather than the resolve of Afib in its early stages.
I highly respect your determination to deal with the problem so actively, like I admire everybody else's desire to not accept the current narrative: "It's all about maintaining quality of life!". As for the medicine stuff, they are all dealing with the poorly known problems, not only of cardiac arrhythmias, but also of the other 30 chronic disease and syndromes, where they have so little knowledge about. Just imagine trying to repair a modern cellphone yourself, where all of us have almost no knowledge about, so you will understand the situation MDs are in. They do not know the cause of AF! Period!
Absolutely. My favourite analogy is we all have a glass and fill it up to a greater or lesser extent depending on our circumstances which start with our genetic disposition.
Overdo it be that stress, binge drinking, eating a big meat dinner late, extreme fitness training etc etc - usually a combination- and the glass spills over ie AF triggered. So what I mean is the trigger is the last straw not the total cause.
Hence why I have focussed on improving my Lifestyle choices from day 1; easier said than done of course 😆.
Good summary, it's all about reducing and managing risk and symptoms, however sometimes we need medical intervention to help us when our hearts are damaged
Totally, without the correct form of intervention being introduced at an early stage, i.e. personalised lifestyle changes etc., we become at a greater risk of quicker progression and the possibility of heart damage as you say.
Well Jasper (the ghost) you are thinking aloud and with all that learning and possibly some experience in there.
Mine was a straight forward STROKE, Rapid & Persistent AF and 4 days in a Carotid Scan showed a shadow on Thyroid = Papillary carcinoma on the edge of my Right Thyroid Lobe. On careful examination a tiny bit in the Left Lobe.
But I wonder why yes a rapid H/Rate Day now controlled on Diltiazem and my normal low 47avg bpm Night.
Why it doesn't convert ever.
Anyone got any thoughts.
No symptoms - movement within just can't walk far before I have to stop for secomds and elevation, stairs or quick walking .
Thanks for replying Joy, I'm so sorry that you've been though the mill! I hope you're getting all you need in terms of support and medication in terms of front-line health care, not sure how it is in NZ. Also, perhaps help and advice (from others more learned than I!) here as well. I truly hope you're back in NSR again soon! Take care.
NSR could be stalling because it seems I still have 2 rogue lymphs which presumably missed in Thyroidectomy. My fault cause I refused RAI Radio Active Iodine treatment but side effects were bad leukaemia, damage to voice box, or oesphasgus or swallowing etc.
The question I asked my general surgeon why 12 removed and not 15 or 20 like others and the last guy on here had 46 removed but was still put on suppression of TSH for 5 years. I refused that too. And he had 2 x RAI treatments.
So fingers crossed when these 2 are 'killed' or removed better I will go back into NSR.
NSR muttered is a magnicent gift to forward to.
I can return to beating everyone I know in the 100metres! And at 75!
I’m not allowed to post links to scientific research papers here, but just Google ‘Vagus Nerve Stimulation and Atrial Fibrillation: Revealing the Paradox’ and you’ll be up to date!
Many thanks for this, looks very optimistic for sure! "Since the last decade, there is accumulating evidence from experimental studies and randomized clinical studies that low-level VNS (LLVNS), below the bradycardia threshold, is an effective treatment for AF".
Thank you Jasper and Abbyroza for this information: I've just sent emailed my cardiologist to ask if LLVNS is available anywhere .. I'm guessing it's still in trial stages.
"I know there's been interest in it (LLVNS) for a while, but it hadn't got beyond fairly small scale trials at this stage. I'm not aware of any trials going on in the UK currently, and at the moment I think I would look on it as potentially promising, but a long way from routine acceptance..."
So not a new idea but I suppose not of interest to the pharmaceutical companies who fund big trials. We need the Gates Foundation or Mr Musk 😬 to get behind AF research.
Not quite what it seems 🫤 I was in touch with him about switching anticoagulant (due to side effects) so I just added the question .. but I'm lucky that he listens and is informative.
You are so lucky to have such good communications with him😊 I asked at my recent appointment, is it safe for me to take an Omega 3 fish oil supplement as well as my anticoagulant. Said he wasn’t sure of the latest thinking on this, would look into it and let me know… But hasn’t got back to me. Of course🙂
Also typical for vagal is: at rest or during sleep, with a full stomach, when ‘missing’ a burp, when laughing loud and LONG, when breathing shallowly while talking, and especially when stressed or nervous.
Good points. I regard Lifestyle changes as part of 'the treatment' and I will try anything (and have done!) as long as there are no known side effects. As a result I have a lot to be grateful to AF for - what I trust will be less chronic issues in my 70's.
Having taken a close interest in AF principally on this Forum but also books and consulting Alternative Practitioners, I conclude the best way to treat the AF mongrel is with a mongrel cure - ie a bit of everything pills, supplements & lifestyle not forgetting the spiritual side.
Absolutely, you're in a similar position to myself I think. Frustratingly, after diagnosis (certainly in the UK), the guesswork surrounding possible individual cause & subsequently the varied approach to treatment is very much left to the patient to decipher. I don't suppose any of us enjoy being told "lifestyle changes" are essential, yet they are almost always required to some extent. In my situation, I was told to limit alcohol consumption by one practicioner and this was the extent of the advice given over 6-7 GP / Hospital visits. I definitely think there's a greater need for personal advice at a primary stage of healthcare, rather than the current, 1) blood tests, 2) ecg, 3) ultrasound and 4) Beta-blockers - then off you go approach! Without finding a more bespoke type of treatment (as soon as possible!), we become at higher risk of perpetuating Afib progression, more frequent episodes, greater Afib burden - by way of symptoms, and an overall worsening condition. Whilst we're advised against this, can you imagine what state would we be in where it not for "Dr.Google". How many people on here would even know of the possible benefits of weight management, diet, magnesium etc. etc.
Agreed. I see the next stage in health care is to find an integrative qualified doctor that you trust. If I can be allowed a generalised opinion, the NHS is now a tests & dispenser agent and does not provide sufficient health guidance.
It made me wonder - are we all so very different? I have a feeling that is no more than a modern individualist mantra and part of our culture's prevailing ideology. There are important commonalities in modern populations that bring us together rather than separate us. To be a bit of a misery and to list only the bad ones:
- we are often too fat and too lazy; as a result we suffer from more atherosclerosis, hypertension, diabetes, sleep apnoea and so on;
- we frequently "treat"ourselves, "snack" or choose 'fast food' in place of traditionally prepared regular meals, eating highly-processed food containing higher levels of fats, sugars and charring;
- we consume more prescribed and non-prescribed drugs than ever before in human history (inc. alcohol, pain killers, mind-control drugs and anti-depressants).
- we sleep for fewer hours and of lower quality;
- and we are more socially stressed.
In animal modelling and human studies, AF increases in all of the above scenarios.
I would add to this list the modern comforts of retirement - the oh so comfy mattress that keeps us in bed too long, social media that keeps us scrolling and home deliveries or the motor car that stops us fetching and carrying. Or perhaps that’s just me!
Absolutely spot on Steve, and yet looking at future AF projections the current situation is predicted to get much worse. Without an overall re-think in terms of our lifestyles, the Afib forecast is for storms! Bit dramatic, but you get my point!
Looking at the way obesity is increasing, I fear a bleak time ahead. The number of overweight children is so worrying. I sometimes wonder whether, one day, it might be seen as a form of abuse.
well summed up Jasper what helps me is a one hour prog each morning ie 10 mins yoga 20 mins wim hof breath work 5 mins shower hot then cold back of neck esp 20mins tm wrapped in wooly blanket!
Used to be in and out of rythm now out but can play golf ( badly) enjoy a coffee occasional beer had three cardio inv flecky used to do the trick but just take the meds and try to normalise through the breath work all the best folks
That's very interesting, especially the Wim Hof routine! I'd read a bit of the benefits and wanted to experiment with the hot / cold rutine, but I'd spent a day doing similar (ice cold plunge pool / sauna etc!) at an Istanbul Turkish Baths about 20 years agao and wondered whether that might have kicked the whole thing off? Do you find increased / decreased BPM during the process?
We have a Finnish sauna at home and an ice cold tub. I have been using these for over 10 years now -before that we went to a public sauna, I total 50 years- and I have never noticed any negative effects, except… when I’m stressed and worried. Then a sauna -very seldomly- can trigger AF.
I think if it works for you individually (without any issues) then that's all that matters, as the overall health benefits of Saunas have been well documented. It's also been reported that for some taking a cold shower can stimulate the vagal nerve, covert an Afib episode to NSR and slow a racing heartrate. I may have to give this a go!
Not aware of sig BPM increase during cold part take it easy 30secs gradually increasing within (comfort!) range to a few minutes breath work before important and you will feel brilliant
I can identify with the sauna and cold plunge. I often spent a week with my sister and Finnish brother in law at their summer cottage on an island in the Baltic. Once I got used to the cold water I loved it but two years ago when I visited my sister wouldn't let me take the Baltic plunge. Instead I enjoyed a splash/part soak in the seawater tub She had a point. I hadn't had sauna for 3 years and there was no medical help for miles. Ok I may not have needed emergency help . My daughter and granddaughter enjoyed the sea water tub with me then swam in the sea. I guess if you're Scandinavian and regularly have a sauna it's not going to set off your afib.
I can identify with the sauna and cold plunge. I often spent a week with my sister and Finnish brother in law at their summer cottage on an island in the Baltic. Once I got used to the cold water I loved it but two years ago when I visited my sister wouldn't let me take the Baltic plunge. Instead I enjoyed a splash/part soak in the seawater tub She had a point. I hadn't had sauna for 3 years and there was no medical help for miles. Ok I may not have needed emergency help . My daughter and granddaughter enjoyed the sea water tub with me then swam in the sea. I guess if you're Scandinavian and regularly have a sauna it's not going to set off your afib.
In my case it is definitely familial - My father had it and my four sisters and I have it. That said, it is PAF and virtually symptomless in each case and only diagnosed in later life. In my case it was diagnosed after a severe session of vomiting after I had been prescribed an anti- biotic for an infected cut, that did not agree with me. That was six years ago. I had a cardioversion six months later - I was unaware I was in Afib,I happened to be at a check up with the Cardiologist - he told me I was in A fib, would I like a cardioversion?, I said that since I was there, I might as well. I was admitted and had it that afternoon. Since then, I have an annual check up with echo, last one earlier this month showing no changes to my heart. The odd events I do experience are short and unremarkable.
Hi there, very interesting, not so much of a troublesome ailment then, very much an underlying condition in your case, would you say? Do all your family experience AF the same way? I wonder how many of the general population are likewise to yourself, i.e. unaware they have Afib. Official figures suggest roughly around the same as those as are diagnosed, my suspicion is that there maybe many more. Almost, everyone I've discussed Afib with has reported noticing fluttering palpitations at some stage in their lives, some having them regularly. Generally in short duration and without any debilitating symptoms, they have, by and large, done nothing about them. I know there are many types of palpitations, the majority benign, however I think it's feasable to think that some may have experienced "symptonless" Afib like yourself. Also, pre your cardioversion, do you believe you'd been in Afib for the whole of the prior 6 months, since your diagnosis? Just wondering if you might have converted naturally - without the CV, in that your episodes since have been short?
When I first came to this forum, more than 10 years ago, I have offered the idea that the number of diagnosed may be only "A tip of an iceberg" (wrote the post with this title). My guessing was that the number of AFibers may be 10-20% of the population. People rejected it as too much. Couple of years ago, a screening in Denmark has shown that 40% of the population was with AF, most of them without any idea about it (symptomless). After more than 10 years of research, I strongly believe that about 70% of the population, in any country, may suffer on some kind of arrhythmia, at least from time to time, Symptomless people have the sound heart, which easily switches from NSR to AF and back, causing no troubles at all (my case also).
So, if I understand correctly, your thinking backs up the idea that only when a particular arrythmia becomes apparent, i.e. shows noticeable (or troublesome) symptoms, would a person then become officially diagnosed and counted, so to speak. We could therefore all be carrying arrythmia(s), including Afib, to a greater or less degree throughout our lives. I certainly didn't know about the Denmark screening, do you know if it was conducted on a specific age group? Incidentally, I read a publication in the Lancet earlier this year than quoted ; "Atrial fibrillation (AF) is highly prevalent with a lifetime risk of about 1 in 3–5 individuals after the age of 45 years". This would certainly support your idea that the diagnosed are only a fraction of those affected or indeed "A tip of an Iceberg".
Yes, Jasper, you got it right. The span for AF is from feeling absolutely nothing, to feeling that you will die next moment (when in AF, HR sometimes goes as high as 250 bpm, whereby the heart practically stops pumping blood). I had my first arrhythmias at about 17 yo (not diagnosed), another bout at 47 yo (not diagnosed), then 2 weeks of PVCs at 55 yo (very unpleasant, but never went to see a DR). God knows how many times arrhythmias went unnoticed... When I was researching PVCs, I understood that my main problem is actually AF, at night, almost every night - lasts to this day, but no symptoms at all).
As for the screening, prof. Angelo Aurrichio, from Lugano (CH), was talking about it somewhere in Lisboa, when opening a conference. You may find it in the Internet if you try.
I wish you luck with your research! We already had some guys here who were very active and very keen on researching, what is so positive (citizen research - even without medical education, people have right to hit good ideas)
None of my sisters have severe symptoms, one did have occasional palpitations another was diagnosed when she was found to have an overactive thyroid. The other two, what caused their diagnosis I am not sure, as I live in South Africa and they are scattered around the UK. The two older ones are not that keen on electronic communication , and when I have been in the UK, I haven't asked them ! As far as being in Afibfor 6 months since my diagnosis, I would say, no. When my GP diagnosed me, it was after I rushed back to her because i was vomiting flecks on blood and she was concerned. My HR was 140 and the ECG she did showed AF - because of the blood (very litttle) she was concerned about a dissection and that's why I was sent off to the Cardio - when I got there (I was not allowed to drive and had to find a driver) I was back in NSR. I was kept in hospital for 2 nights and discharged as I was normal. I was told to watch my HR and if it rose to go to the GP, this I did a week before the check up visit as my primitive BP monitor was showing irrregular heart beat, The ECG confirmed Afib, I kept checking it and the irregularity did not show on my monitor again, and I was surprised when he told me I was in Afib a week later.He had thought maybe it was a 'one off', and did not prescribe an anti-coagulant, that is why i had to watch carefully, so he knew when to prescribe this if necessary.I now take Xeralto and 1.25mg Bisoprolol as needed.
Overindulgence is what first set off mine decades ago. After lifestyle adjustments, my heart's misfiring electricals adapted to different triggers to set it off. Now I have a whole slew of situations I know now to avoid, but still the beast lies in wait!
Thank you for such a great post!Stress and diet get me into afib. What keeps me out of Afib? Gluten free, sugar free, vegetarian, alcohol free diet. Food rich in potassium & magnesium. I get more oxygen with slow nasal diaphragmatic breathing, walking more than 10000 steps a day and swimming daily. With swimming I worked on my breathing, before I could not swim the front strokes for long without panicking to grab some air, now I only swim the front strokes. I only swim 4 lapses daily.
I try to follow a similar path. One gp told me she thought that stress, infection and alcohol were triggers but not of course for everyone. I've noticed that stress alcohol and coffee if it's too strong were triggers. I haven't drunk alcohol for about 10 years as my body said it didn't like it!! I wasn't diagnosed until September 2019 but I'd been occasionally aware of uneven heart beat for a few years before. I used to attend yoga classes but now I do relaxing stretches at home. Classes used to be 45 minutes but when I'm at home I aim for 30 minutes. After 7 minutes I can't believe so little time has passed! Sorry to go on!
yep different for everybody and to us too. When you think you have worked out what causes them or what stops them in their tracks whoosh all change and back to the drawing board.
yep, avoid triggers and take the tablets like the other millions across the world with AFib. I have had it persistently for 18mths and the meds help control.
Beta blocker to regulate and Edoxaban to slightly reduce stroke risk
For me, I believe afib is a family thing to a large extent,,,there are 11 2 nd cousins, ages 60 to 81 on my Moms side,,one passed away and 5 of us left have fib,,,no one else in the family that I know of has afib,,, we shall see what develops if anything in the 5 who are ok so far,,,and heart issues are prevalent in the females in this family anyway,,,most die of strokes or infarctions,,,,I am thankful my afib has been very occasional these past 8 years,,,,my pacemaker keeps the pulse from going to low and metoprolol and Eliquis have me covered for meds,,,,
Just read your Bio and see that you are not a happy bunny with your medications. They put you on beta-blockers, slowed your heart that way, and then applied pacemaker to correct their mistake. In general, beta-blockers slow your body to the level of stopping it - people sometimes experience SCA that way... or kidney failure... I strongly believe that your eyes problem originated that way also. Nobody will ever know what negative effects beta-blockers or AC medications really have on the body (long term)..
As others on here replied, it's a mongrel condition. & everyone is different. I've tried all sorts to see if there's anything obvious that triggers mine and there's nothing. Nada. Always kept active, never smoked, kept weight in check, alcohol in moderation yet mine hit out of the blue. No warning. No one else in the family has it. The one thing I keep going back to was my initial collapse happened 1 month into the 1st lockdown. 1 in the house was front line. Did they bring the virus home, I catch it but despite having no symptoms it led to me starting with it? No idea. So for now I'm trying to keep with a healthy lifestyle and, as I do seem to get knocked for 6 when I have an "episode" as i call it, just make sure when I get one I take the time to rest and recover.
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