I’m hoping to get your opinions and hopefully advice, on a bit of information that I’ve recently picked up on. From articles I’ve read, there are two important statements ;
1) That over the age of 64, it is estimated that 1 in 4 people suffer from Afib & this rises to 50% of people over the age of 80 - heartrythmalliance.org
2) That 70% of people with Afib will be symptomatic - bartsaf.org
The questions that immediately come to mind with regards to both these statement ;
Given that the over 65 population of the U.K. number around 11 million, does that mean that approx. 2.75 million people over 65 suffer from Afib and (r.e. Statement 2) that approx. 2 million will be symptomatic? Would this also suggest that these 2.75 million people are at “5 times” the normal risk of stroke?
Given the general consensus is that all treatment amounts to varying degrees of symptom management, is it a case of unless your Afib is symptomatic, and symptoms are debilitating enough to affect your lifestyle, you basically carry on with life with Afib left untreated? Also that if your treatment i.e. meds, ablation, lifestyle changes or whatever “manages” your symptoms, then Afibbers again carry on with a “normal” life, until such time as things possibly change.
To summarise, I think what I’m trying to get my head around is that, whilst we’re all told and acknowledge Afib as being progressive, with some, it may only progress to a certain stage no matter what lifestyle choices etc. are made. Clearly, there are not 25% of over 64 year olds living a life of abstinence! Neither 50% of over 80’s heading toward inevitable ablations. Of the 25% and 50% being quoted with Afib after the age of 64 / 80 it’s likely a good amount will have had the condition for many years previous. Is it likely that there are many with Afib out there that are simply taking medication that will “manage” symptoms for ever? Given these figures, it may suggest that membership of this group is possibly confined to us poor souls whose symptoms have “progressed” quicker than the rest!
I know this is a bit rambling, but I’d love to know your thoughts on the above stats and views,. Unless I'm confused in my opinions, I’m personally taking it as a glimmer of positivity. 😀
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Jasper18
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Hi Jasper I think it is a yes to all your queries, there’s probably just too many of us with this condition and once officially diagnosed given the meds and told that’s it. With the varying severity of AFib and how symptomatic an individual is basically determines the quality of life. As Afib is generally not classed as life threatening even though the risk of stroke is so high once on a DOAC we are again relegated down the list of importance. I think the volume of AFibbers is just too overwhelming for the NHS. Very good post Jasper as I often have these ponderings myself . Regards Kathleen
Thanks for replying! Over the past months I’ve been thinking more about those that are just unaware of their condition and carry on, also those who are diagnosed and then are managed for the next 20+ years with medication. There must be literally millions of the former, with only a smaller % facing real difficulties coping with symptoms, wouldn’t you say? Any idea what the membership of this forum is?
Hi Jasper the membership is probably quite high as it is global. I had AFib unknowingly for 5 years before diagnosis, although I had palpitations apart from the hyper-urination there was no impact on my life, I guess because my mother had them and nothing was given to her it didn't occur to me it had a name. When my very healthy sister had a stroke and was told she had asymptomatic AFib it was my eureka moment, it all came to a sudden realisation, my mother had two strokes and many TIAs, now my sister having a stroke and now I could be next. On learning of the increased risk of stroke I was duly shocked. My AFib must be low rate as I am on 1.25mg Bisoprolol, when they gave me 5mg I ended up in hospital as I collapsed unconscious. This forum has educated me on this condition and I honestly believe that the average GP is out of their depth when it comes to understanding the randomness of AFib. Why give someone a drug to lower an already pretty low heart rate? Rate control should be initially monitored and the patient advised of the dangers of bradycardia, a PIP approach would have been far more appropriate for me. I see all this in hindsight because of this forum. Why are GPs so unable to educate us? Why do we have to rely on this forum to gain the necessary knowledge to help ourselves? It can only be that they are out of their depth with this condition, not very reassuring. As you comment so many are totally unaware that they have it, those of us that are diagnosed are largely controlled by drugs for ever more, again as you comment. Is that ok? I do not have the answer to that. Regards Kathleen and thanks for starting this topic as I find it very interesting.
Rate control as a first option seems to be the way, certainly in the U.K. I know from my experience that my resting BPM wasn’t ever considered prior to me being prescribed bisoprolol. A GP at the A&E described my experience as bin-dangerous and to basically accept it as being an occasional annoyance.
I would imagine that any health care professional who they themselves experienced AFib would not dismiss it as an occasional annoyance. Reading on this forum so many posts where people are in despair at their limited treatment and complete lack of understanding. Those who are still working, many quite young, it's not just us oldies who get it. For many the medication given to help brings so many more difficulties, I know this to my cost but we have little choice. I was very fortunate when rendered unconscious with Bisoprolol as being on a DOAC hitting my head could have triggered a brain bleed. I was again very fortunate being on holiday I was admitted to the amazing Dorchester County Hospital A&E. Every test was done and a thorough physical examination combined with a 12 lead ECG. I explained I had recently been diagnosed with AFib and placed on the drug from hell Bisoprolol, which I was certain was the cause of my collapse. Their conclusion was the same and advised me to immediately half the dose as it had caused extreme Bradycardia with postural hypotension. On returning home my GP halved it again to 1.25mg, I still go into bradycardia at rest but am ok with approx 50 bpm. If my bpm had been considered at the onset non of the above would have happened, I just don't understand why this isn't an important consideration in AFib treatment as not every one has high rate episodes. Hopefully to the future treatments and understanding of this condition will improve, as indeed they have already since my mother was found to have an irregular pulse in the 1980s and given nothing. Regards Kathleen
Immediately after PAF diagnosis and seemingly without reference to my normally low resting HR I was prescribed Verapamil - after 10 days I was on my knees and hardly knew who I was. The GP said stop taking it. I do have high rate PAF but low normally bp and resting HR. My current cardio says rate control medication, BB's etc. would in my case be counterproductive due to low resting HR, it could increase the likelihood of triggering AF at night etc.
The longer I go on with this the more I realise how delicate variable and complex our hearts are - difficult for medical science to deal with. There's no one size fits all ..
Spot on! As soon as anyone in the UK is diagnosed with PAF they seem to be given 2.5mg Bisoprolol. Whilst that may be a sensible precautionary approach before an echocardiogram, if the ECG shows a normal heart, there may be no grounds whatsoever for continuing rate control (and more contraindications). My doc wouldn’t even know I had PAF unless I’d bought a 6-lead Kardia to check it out! Still going strong in my 70s!
Hi you mentioned hyper urination ans Afib. Is there a link ? Am I missing something. I have afib for the last 7 years. I also have bladder cancer and an enlarged prostrate. I suffer from bladder urgency and incontinence. Could you explain if the is alink between afib and hyper urination either here or by DM Davidc1075@gmail.com Best wishes
Hi David when we go into an AFib episode many of us produce a hormone called Atrial Natriuretic Peptide or ANP for short. It would appear it is to dump fluid asap as a precaution in case we have too much sodium present, same effect as taking a diuretic I guess. The volume can be huge and occur every 20 mins or so for a few hours in my case, extremely inconvenient as you need a toilet quite often. You can now google this and learn more. It is quite amazing how many medics are totally unable to explain this hyper-urination, in fact they look at me as though I'm nuts. I appreciate you have other medical issues going on but I have no other co-morbidities and have contended with this for six years. Hope this helps you, this forum is so amazing for us all as there is a huge deficiency in any information forthcoming from those who should be giving it. Regards Kathleen
The figure of one in four over 64's with AF sounded very high when I just read your post. On the heartrhythmalliance.org website I can only see "in the over 65-year-old age group it affects about 10% of people". Am I missing something? Thanks
Ah yes, thanks. I've just managed to call that page up at last. The home page buttons at the top often don't work for me on my IPad - I don't know why. I'm guessing that the one in four figure is a projection into the future; if so, they should give a 'by what year' date.
"Atrial fibrillation is the most common heart rhythm disturbance encountered by doctors, affecting around 1.4million people in the UK. It can affect adults of any age, but is more common as people get older; in the over 65-year-old age group it affects about 10% of people."
TBH I'm not sure what that this is about. I couldn't really follow it and after googling some of the content I was none the wiser. Would it be possible to summarise it please.
If I have understood it right, screening of the sample amounting to 10.000 people has shown that 40% of them have had AF. His English is not very good, and I am not sure about mine also...
Ah, yes I thought that was what he might have been saying. Again, I might be missing something in translation as it were but I find that figure hard to believe. I wonder about sample size/context/AF definition etc. Maybe there's more about this survey on the web. Thanks for replying.
The single most important thing is anticoagulation. Yes, a great number of people are asymptomatic and they are the unlucky ones who only discover they have AF when the stroke hits them.
Provided that rate is well controlled and the patient anticoagulated life goes on though there is a growing body who consider that rhythm control is more important as there is some evidence that un controlled AF (fast rate) can ultimately result in heart failure.
"a great number of people are asymptomatic and they are the unlucky ones who only discover they have AF when the stroke hits them."
It's a subtle difference but I think you mean the unlucky ones are those who only find out they have AF when they have a stroke i.e. being asymptomatic is itself not unlucky. It's only "unlucky" if they have a stroke (or other significant consequences) as a result of having AF.
Heart Rate controlled in rapid is to slow it down a.s.a.p.
In doing this the rhythmn is slowed. Which has happened to me. So really I am relying on my CCB Diltiazem to do this, not itself an anti-arrhymn but its action makes the irregular less pronounced.
Left uncontrolled was the fault of NZ's regime of NO FOLLOW UP with a heart specialist lacking responsibility.
Even @ 1 year 4 months down the track of wellness when I did see a hospital heart specialist she had ECHO, ECG and 24hr Heart Monitor. She changed me to Bisoprolol with Dr putting up the dose but at 156bpm Day I remained Heart Rate uncontrolled. Even another 24hr Heart monitor showing that she took no steps to try a different pathway.
CCB Diltiazem saved me. I am now @ 60s Daybpm and 47avg bpm Night.
Important for me was controlling bpm under 100. I had 3 operations (not heart) and each anaethestist threatened that there wouldn't be an op unless I tested under 100. The 1st done thyroidectomy I was not controlled but it went ahead. Discharge papers read 135bpm. Nothing was done with that figure.
The 2nd and 3rd ops I was controlled by my Diltiazem.
Low Heart Rate with AF remains a difficult diagnosis. I've read and it seems that a Pace Maker is the way to go.
So its important not to tangle up the Heart Rate with the Rhythmn.
My heart doesn't seem to concern itself with rhythmn but in walking at elevation I have to stop whilst the blood circulation catches up - conveyed by Dr.
There is an old saying - There are lies, dammed lies and statistics. Statistics are meaningless to an individual and every case of AF is unique. Herd Statistics are really only for epidemiological studies and researchers and IMHO shouldn’t be quoted as absolutes so it is unlikely that 2.75M have a 5x risk of stroke if they have AF.
I think what is important to take into account is co-morbidities, lifestyle and quite a few other factors which aren’t always defined within the stark statistics. Stroke risk is going to be variable and individual and the statement that as soon as you have AF you will be x5 times more likely to have a stroke is now being contested by some studies, for sure AF and age will increase risk - but that’s what CHADSVASC and Q-Risk algorithms are for - to calculate individual risk.
It's more often than not because they are misused by people, either because they don't understand what they really mean or because they want to mislead others (lies, damned lies and statistics).
CHA₂DS₂-VASc and Q-Risk are both based on statistics. Does that make them meaningless too?
Qualification - Herd statistics are meaningless to the individual and my observation is that they tend to cause many anxiety and I could point to many a post on this forum when a poster has been scared by reading statistics and/or told by a medical professional the AF increase risk of stroke by x5.
CHADS & Q-Risk are to help qualify individual risk.
Statistics are useful for research into causation and informing but not helpful to frighten people. As you are a bean counter I would expect you to argue in favour of statistics but they are just numbers as far as I am concerned.
Statistics are a powerful tool in the hands of people who understand them and know how to use them.
I agree with the thrust of your comments - to the extent that people use statistics incorrectly. The problem is generally not the statistics, it's the people using them.
"Herd statistics are meaningless to the individual"
I would agree that they can have limited application for an individual but there's a big difference between being less meaningful and your claim they are meaningless.
For example, there are many statements about the level of increased risk of stroke for people with AF, most of which are backed up by statistics. You argue the statistics quoted are meaningless, whereas I believe otherwise. To me, the "herd statistics" indicate that I am at increased risk of stroke because I have AF. That is meaningful and useful information for me so long as I also understand my actual level of increased risk depends greatly on my circumstances.
Why do the numbers differ from one article to another? Presumably because they are based on different studies and/or different "herds". I live in Australia and a lot of statistics relate to Australia. You might live elsewhere and see stats related to your country where different statistics apply. Or the differences can be because your are comparing "apples and oranges" i.e. statistics produced on a different basis i.e. different sections of the "herd" or over a different timeframe or at a different point in time - noting we live in a dynamic world.
"CHADS & Q-Risk are to help qualify individual risk."
As you would know, the CHA2DS2-VASc Scoring system, is based on statistics derived for different categories of AF sufferers i.e. age, sex and co-morbidities. However, even though more specific to an individual's circumstances it still doesn't qualify (quantify?) individual risk. It is used to break the herd statistics down to smaller "herds" i.e. they are more relevant to an individual but still not specific to them. Nonetheless, they are still useful indicators for when people with AF should be prescribed AC. The correct use of that information is as an input into decision making rather than a rule. This is another example of when herd statistics (for a smaller herd) are meaningful and useful for an individual - so long as they understand their limitations.
Statistics can be an extremely useful and powerful aid to decision making if properly used and understood by users.
I remember reading a projection that 1 in 5 in USA are likely to have Afib in the near future, I think it's said to be a Western world problem and increasing exponentially?
Yes it seems many GPs are not very clued up about Afib, and the current nhs equipment available to GPs doesn't make it easy to capture and diagnose Afib. My GP struggled for 8 months to diagnose my night time 'palpitations'. Then a private cardio suggested Kardia and I had an Afib diagnosis within a week.
I wonder if something like Kardia couldn't be used for routine screening of over 65s, perhaps many of those unfortunate asymptomatics who have strokes might be saved?
The GP did give me a 48 hour ecg gadget but I didn't have an episode on those days .. myPAF is bi monthly or monthly so even the 24/7 might not have caught it, and they are night time episodes when everything is closed. Not easy for the GP.
Thank you for replying. Yes, difficult to detect. New smart watches can do a dimple ECG. and there is the handheld Kardia device which is a useful tool to use for general screening and as BobD says- we should have routine screening.
Yes that idea would catch a lot of persistent / permanent asymptomatics but nor those with unpredictable undiagnosed PAF.
I feel nhs could come up with, or have access to, a technology like Kardia so people could capture it themselves and bring results to surgery for diagnosis and follow up ... it must be possible. Some kind of contract with Kardia (or another) allowing doctors to prescribe a limited subscription .. until diagnosis is achieved.
When a private cardio recommended I get Kardia it was immediately obvious to me that nhs need something like this to speed things up, reduce risk, save public funds and the time spent dealing with strokes .. not to mention the agonising life changing burden of strokes ..
May I ask how you have been campaigning, who are you petitioning etc. Wherever do you start? Are you campaigning on behalf of HealthUnlocked or the Afib association?
I refer of course to Atrial Fibrillation Association. There is a helpful All party Parliamentary Group for AF which holds regular receptions at Westminster and lobbies NICE etc . Most of the current protocols stem from AF Association or Arrhythmia Alliance activity. Less so these days as age , distance and other health issues keep me away but many of my best contacts have been made at these events.
That left before I gave permission ... I hope you don't mind me asking ... are you approaching the nhs, Social Services, or the British Medical Association ...?
I do appreciate your concise and sober advice to us all!
When I was about 25 years younger due to a huge amount of stress in my life I developed an irregular heat beat. Cardiologist put me on a rate control drug and an aspirin a day. Rather than helping me understand stress levels. I developed a horrible ringing in my ears, which I still have after being off that drug for years now. What I really want to say, it that despite being on a rate control, I had the worst bought of AF ever. Up to that point I did not have AF. In my experience rate control didn't work. What works is a huge change in lifestyle. Interestingly enough my new cardiologist told me to start meditating to calm down. I don't mean to minimize health issues at all but a lot of it is brought on by just overdoing which is what I was guilty of, and not understanding the toll it takes on our health. All that said, we are all different and the idea of a standard practice that the doctors are taught to treat conditions is a bunch of hog wash. I have yet to have a doctor, except for a holistic one, ask anything about lifestyle or diet. Just recently, I was put on a drug that I should have been on as it masks low blood sugar symptoms which is what I have. My bottom line is I don't trust doctors at all.
Thanks for replying. A GP I once saw in A&E used an analogy in his definition of Afib. He compared it to the prostate gland in males, in that all males will see enlargement of the prostate in their lifetime - to some extent. Some will get symptoms, and be able to live with them, others won’t get any and others will have symptoms but not notice any! Some will need medication and others not. As others have described many times in this forum, Afib as a condition is “mongrel”. We are all so individual, professionals cannot pinpoint clear and certain triggers that are relative to us all with much certainty (caffeine as an example - yes or no?) let alone a defined way of lessening frequency of episodes for all those affected. It’s seems a bit of a stab in the dark, rate control as first option for all. With the amount of people affected it will be a challenge for the NHS in the future for sure. My only point was that sometimes I believe our own personal understanding of Afib is influenced by what we read. If there is any truth in the figures published and there are in effect way way more people than officially diagnosed with the condition, then there may be less “immediate danger” to all those who are experiencing symptoms and are treated with medication. Quite possibly the threat of a progressive disease may not always be so bleak.
I always admired people who are able to take the official data with reserve and who use their own judgement intensely.
More than 10 years ago, as a newbie, under a different name, I have offered the idea that the percentage of AF affected people in the population may be far greater (10% to 20%) than the percentage of the diagnosed (bellow 2% at that time) . Everybody jumped on me. Today, after so many years of research, I am certain that this percentage may go up to 70% of arrhythmia affected, most of them without any symptoms and not knowing anything about the problem they have. AF and arrhythmia in general are not reserved for the elderly (so fair, lol) - we have seen here the cases of an ablation at 12 years old. Unfortunately, there is so little the medicine knows about arrhythmia, starting with the very cause of them... Do not get angry with the MDs, please, they do not dispose of the necessary knowledge, which is still to come someday.
I can't use statistics in my answer but I conform to those statements made in as much as I started my journey at the age of 54, now 80 and have been through all stages ie diagnosis/drug assistance early on, an P/A/F induced stroke 2 years later followed by more drug control and anticoagulant, in my 70's ablation plus Pacemaker and current situation, perm. A/F, diagnosed after breaking hip and surgery, drug controlled now back in sinus but in minor heart failure and throughout I have had a good life, travelled the World and not let it stop me doing anything I wanted to do. Working in a leisure centre for 30 years I knew the value of sport/exercise and how to do it safely, with or without A/F, and continued with this until 78. P/A/F was my diagnosis and I consider it a b.nuisance and determined that it wouldn't ruin my life and it hasn't, yes there have been ups and downs but as I always say, I'm still here !
ps I would add that I believe A/F is hereditary.......Mother had heart attacks and angina, her brother heart problems, their mother 2 stokes and died of a heart attack and so on, I also believe disposition is a factor too but these are just my theories.
Thanks for this reply which l have just read. It is a great encouragement and very inspiring. It can be done, as you have proved, not to let it define who you are. I agree, it is most likely in the genes, my family had various problems. Take care.
well interesting questions. And yes those that are here are mostly those that have progressed but there are others that have delayed their journey such as me, by luck or good lifestyle I’m not 100% sure!
My thinking is yes it’s progressive but here’s the caveat. People advance at different rates, it’s not known 100% why although it is known if you keep healthy that is both exercise, diet and don’t over do it with alcohol then progression might be slower as well as less frequent occurrence's of AF. There are many here including myself who have been fortunate to have delayed progression for many years. My first AF episode was 31 years ago and until 2022 on average only one episode every 5 years. No drugs during that time. My thing was that I did something in the way of training or sport at least 5 days a week. I ate a good Mediterranean diet and was lean and fit.
Since 2022 I’ve had another 3 episodes and all cardioverted im now on very low dose of metoprolol and low dose Flecainide. I did blood tests a year ago and found I was deficient in CoQ10 and low in both Vitd3 and magnesium. I’ve now been supplementing all 3 and due for blood tests to check status in about a month. I feel great and last episode was end of January. I try to carry on with normal life but sometimes you just think about AF when you have sip of wine, I guess I’m just super careful now. Alcohol was my trigger way back in 1993
A few months ago I asked my cardio 'is PAF is always progressive', as many people seem to believe. He said, of every 100 people who come in with AF it's thought that around 60 will progress .. and the 'vagal type' of PAF (night time episodes) tends to be in that 40% so I'm hopeful and focused on finding ways to simplify life and support my body better ...
Good post. Interesting discussion raising many key points. As challenging as AF is, I remain positive after 11 years that it has overall improved my life by making better lifestyle choices including spiritual growth.
I tend to agree that if one accepts the diagnosis of AF and makes positive changes to life style then it may well improve life expectancy and general health. People need to remember that there are far worse things than AF to get.
Yes, in the heat of a high rate PAF episode not so easy to remember but once the PIP has worked, then relief and gratitude kick in. In a way these crises are a reminder of what is really important which is a good thing.
Mine was diagnosed with STROKE -Embolic type (Clot stopped in my Left Frontal Brain Lobe) The Drs thought Back of my Head!
So face drop, fingers - dropsy of right hand, speech very impaired.
Swallowing impaired.
So STROKE, AF rapid and persistent and Thyroid Papillary Cancer.
So AF visited when the thyroid had abnormality which caused the Ischaesmic STROKE.
Symptoms were on the rapid AF and being given Metoprolol which I had said NO to. Prescribed 3 x 23.75 which even reducing it produced NO QUALITY OF LIFE. Breathless, no emergy on exertion. Slept. 24hr monitor showed up 186bpm Day with pauses Night 47avg bpm.
Its clearly irresponsible not to follow up after Stroke and with AF. I could have been rescued from the damage of my heart.
Once Heart Rate sorted through attending an appointment with Specialist who introduced CCB Diltiazem. I had the 180 reduced to 120mg AM. The Bisoprolol was reduced to 2.5mg PM for BP control.
Now no symptoms unless there's a great elevation of land, stairs, rushing by walking fast.
Auckland was surprised that I have no flutters, palpations or pain. Well, I don't. But apparently I have "a bad ribcage" and my heart has been pushed more left.
I chose PRADAXA 110mg x twice.
I'm venturing out on 2 o/seas trips in October and next March. Direct flights. Cross your fingers that all go well as I haven't paid extra to cover Thyroid Cancer (removed) and AF as "everything under control.
Before 2019 and the stroke I was taking only B12 Solgar under the tongue. I keep level at 700.
AF under control Day 60s H/Rate now. No symptoms.
Thyroid cancer removed but there is always a risk of its return. Any operation would be done here in NZ.
Only going for 14 days JAPAN and 10 days Tasmania.
Life is worth living. I pace myself. Not ringing the St John Alarm in a hurry. For 1 fall to be checked in almost 5 years.
I'm not interested in numbers of the dying. I'm alive until I'm not.
Wouldn't it more likely be 1 in 4 might eventually succumb to AF? And I guess that the stroke risk applies only to undiscovered AF, not to people with AF treated but with anticoagulants.
Your figures seem far too high, too. For example, here are some figures from one recent large study, of which there are many:
"A total of 17 238 individuals... were enrolled; 2278 (13.2%) had prevalent AF. "
That is a little over 1 in 10, but clearly includes very elderly people.
In terms of "symptomatic", the range is wide and the response to symptoms even wider.
I remember being utterly confused by the "prevalent" AF study. "Among 14 960 individuals without prevalent AF, the AF incidence rate was 23.7 per 1000 PY." That amounts to about 350 incidents of AF among those individuals defined as not having "prevalent" AF. What?
I have asymptomatic AF, but for about twenty three years had symptomatic AF. My heart rate is within the normal range, so I live with medication, taking only an anticoagulant, not a DOAC, but Warfarin. The one DOAC I tried caused an autoimmune response with 4 years of Polymyalgia Rheumatica. It's been suggested I try a different DOAC, but once bitten, I am twice shy of DOACs. Warfarin suits me.During my AF years Flecainide, without a beta blocker worked. I am also asthmatic. I'm now 79. I just get on with life, made a little harder by having foot drop after slipping half way downstairs four years ago. I can no longer drive, but with the aid if a carbon fibre orthotic / brace, can walk, with a stick for balance.
My last annual blood tests had one group reported as "abnormal but not unexpected" that of red blood cell count and heamocrit, indicating I'm slightly anaemic. No treatment for that has worked so I just get on with life.
How interesting, I was diagnosed with afib in July 2020 and put on anti arrythmics and DOAC Apixaban (which I still take). I also developed polymyalgia a couple of months after my afib diagnosis. I do wonder now if this was related to the apixaban 🤔
Many thanks for your post. I have gained a lot of information from the many great people on here. I agree with many, that GPs just want to wash their hands of this and hand out medication without even thinking of the consequences. I was treated for AFib by my GP as I had three ecgs at the practice and they all diagnosed AFib. Subsequently admitted to hospital with suspected heart attack. Long story short, as I couldn't wait for NHS cardiology follow up appointment (which was 5 months hence) booked an EP privately. I had dreadful side effects from medication also. EP advised me that there was no sign of any AFib episodes on my 3 ecgs from GP practice nor on the 24 hour monitor. He also informed me that my heart attack was unlikely as Troponin levels were very low whereas with a heart attack they are extremely high. He then monitored me and I sent him ecgs with the Kardia mobile which on two occasions indicated "possible" episodes of AFib. I had two very heated discussions with my GP trying to explain why I had taken the private route and didn't wish to lose the NHS thread. She then referred me again to the NHS cardiologist and this time they rejected the referral on the grounds that I was on anti coagulants when I didn't have AFib. What I am saying here is that AFib, as you rightly suggest, can be asymptomatic as possibly in my case. The private EP told me I definitely had an "event" and he was endeavouring to get to the root cause or if I showed any signs of AFib. No one on the NHS bothered to follow up any of my issues. The cardiac rehabilitation team were brilliant and tried to get my GP involved in the side effects I was experiencing, but all to no avail. I had six months of suffering side effects which affected my quality of life. At the moment, things are much better, thanks to the EP. However, I feel that as AFib is such a complicated issue and also very common, the NHS ought to be more vigilant and follow up more thoroughly. Thank you so much again for posting these statistics, I have found this forum incredibly useful. Good luck. Lynne
goodness me you've had a difficult journey .. I spent 8 months getting nowhere with my GP. I finally insisted on a private cardio referral, I just needed to understand what was going on with my heart. The private cardio quickly diagnosed PAF and put me into nhs cardiology system where I have been well looked after ...
In my case my GP was excellent and recognised that the local cardiology dept were useless so really fought on my behalf ringing cardiology which obviously had an affect as they rang me the same afternoon with an appointment. Unfortunately both GP & I agreed that cardiology were not helpful at which point he suggested I see someone privately, against his principles. Best move ever!
But isn’t it sad that we have to fight to get to see the expert specialists.
I am 83 and only have very infrequent incidents. Yet I have to take medication daily to thin my blood ( apixiban) I am waiting for a tabled which will stop AF instantly. Then no need for blood thinners ! Flecainide usually works but takes a few hours
Re your question about the "5 times the risk" being universally applicable to all AF sufferers, here's a paper that shows how stroke risk varies with both the duration of an AF event, and your cha2ds2-vasc score. It also mentions a current trial in the USA on the suitability of a PIP approach to anticoagulation ...
It's an easy read. Note the red/green infilled table that gives the crucial details. And you can download a free pdf as well to save for future reference, as I have.
Yes interesting, I'll send a copy to my cardio incase he's not aware of it. It's a significant study. So if I understand it correctly most strokes happen between 1 - 5 days after an AF episode (without anticoagulation) and higher CHADs scores obviously increase the risk.
I notice that the study in Figure 2 seems to use 5.5 hours AF episode duration, while the study in Figure 3 has it starting at 6 minutes. A cardio told me at some point that clotting can happen after 5 minutes of AF.
It's the US Govt site that details all clinical trials. Have you gained access yet?
I get access on my android phone ... perhaps try that if possible. A Forum member recently posted an older article that concluded stopping and starting DOACs was dangerous, but the US Govt wouldn't have approved this trial if there was more evidence of that. This trial will hopefully resolve the truth of this issue. But it will take quite a few years, perhaps too many for me.🤔
My EP told me there are 2.7 million people in the UK diagnosed with afib and that is rising. He also estimated double that walking around with afib who don't know they have it until they suffer a stroke. Pretty scary statistics in my opinion
A great point with some really interesting answers. Most data is population based, ie epidemiology and speaks only of generalised risk becoming a co-morbidity with the other risks. The stroke risk is significant and real so much so NICE set about a programme to fit ILR's into 650000 people for the express purpose of detecting Afib, in order to reduce stroke deaths by 6500. (The figures are from memory). The health cost was deemed an effective preventative health measure.My journey started innocently enough with a new patient medical at the GP surgery following a house move 9 years ago.
The HCA did all the work! And found what she said was a very low pulse circa 40 ISH on the ECG. Normally HR is raised with white coat syndrome. In the days when preventative screening was still the norm (9years ago) I was referred to Cardiology. Verdict: nothing to see here, SR Bradycardia with a few ectopics, everything's okay.
30 months ago severe stroke, magic timely treatment and movement, speech (mostly) and general health restored. No issues found - cryptogenic. Take clopidogrel antiplatelet for the rest of.
A year later as part of the NICE study above I'm called in to have an ILR fitted. 3 months later it finds a short Afib event, just one. Paroxysmal . So meds change to Edoxaban anticoagulant. Go away and live a normal life.
Noteworthy from discharge from the stroke I didn't actually see a cardiologist or stroke specialist face to face. Even the ILR was fitted by a nurse practitioner.
Moving on 5 months ago I collapsed while doing a Parkrun. ILR shows a ventricular tachycardia, a sudden cardiac arrest, lucky to still be here. Idiopathic. So new meds, bisoprolol and another device, an ICD. Go away and get on with your life.
They did find thinning of the left ventricle with askinesia and dyskinesia, by a scar from, they speculated in spite of no ischaemic findings, guess what a silent heart attack!😂
It is amazing what they can do. If I were in a teaching hospital area, Oxford, Brompton etc I think I would have had a battery of tests, investigative curiosity and I may have a diagnosis. But a poorly resourced general hospital couldn't even do the check for Sarcoidosis which I had to go to Oxford for but wouldn't do more recommended investigation by Oxford as it wouldn't change the outcome treatment.
There is so much more to know at the individual level around personal risk. We can be guided by population data but I am left thinking were any of my life threatening events preventable. Certainly the unfolding picture was reactive not proactive it seems to me.
At the moment more is unknown than known and the fitting of devices, open heart surgery, ablations, will I'm sure in the future be viewed as crude interventions as well as current prescribing practice.
But it's the best we have and health intervention and health events are a bit of a lottery.
This weekend six weeks on from having a revised ICD procedure to correct errors made, I undertook a mini backpacking adventure and wild camping over the Isle of Wight downs. My sister says I'm a nutter and had loads of caveats about phone contact, walking in isolated areas, I did cover 16 Kms without seeing a soul. But it was life affirming and just great to stop thinking about how unwell I could be.
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