I was diagnosed with AF in December, put on biosopol, losartan & apaxiban then had a CV in feb which worked for 3 months. Another CV scheduled at start of sept and given flecainide.
Unfortunately the 2nd CV didn’t go according to plan and I went into cardiac arrest. Apparently I was “ down” for 6 mins. Apart from bruising from cannulas and CPR, and a bit of brain fog,I feel I physically came away lightly. No longer on flecainide and angiogram shows plumbing ok. Consultant has advised no more CV.s I am waiting for sleep test and possible ablation.
Emotionally it is a little more challenging.
The worse side effect of AF in all of this is the breathlessness and the fatigue on attempting any physical activity. I am increasing exercise - slow walking but increasing distance. I am trying to lose weight - want bmi to drop to acceptable level for ablation.
I’m a 60 year old grandmother with 3 grandchildren under 5 and really want to get back to being more “hands on” with them . On bad days dread the thought that this is how I’m going to be.
On good days thankful for the second chance.
sorry for the essay, but if anyone understands, I hope it’s you guys
any advice of coping with the breathlessness is welcome !
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Mrsd_uk
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PEA (pulseless electrical activity) is extremely rare. The electrical impulses are chasing about the heart but for some reason the muscle does not respond meaning that the ECG machine tells you everything is fine but the heart is not pumping. I had this occur in 2017 suspected due to severe dehydration (I had been nil by mouth for 14 hours) resulting in several broken ribs. It is apparently a one on five million risk so to have two members here s dissproportionate!.
With an extra 17 years I can't help you with the breathless thing. I call it getting old.
Used to be called electromechanical disconnect but PEA is better. I asked a leading Professor how common it was and he told me in fifty years in the business he had never seen it.
my older brother had a dose of PEA not long after his 2xCABG … with his amazing dark humour he got himself a T- shirt with “Meet Two Veg” on it ( for family occasions only)
Life style can reduce AF burden. Less meat, no processed foods, weight loss with a BMI less than 26, no alcohol, no caffeine, less stress, gentle exercise ( endurance athletes are good candidates to give themselves AF) have all been shown to help. AF tends to beget AF due to the affect it has on the left atrium meaning the more you have the more you will have. Go to AF Association main website and read till you drop.
welcome Mrsd. I’m also an AF newbie and the same age as you. I’ve had 5 episodes of AF, the first being on Christmas Day. I hoped it was a one-off but had a second episode in April, closely followed by the third. So that put the kibosh on it being a one-off thing. I can only speak for myself, and different people will tell you different things, but I don’t think AF can be treated or managed by lifestyle measures alone. I’m a big believer in following as healthy a lifestyle to support our overall health and wellbeing but the fact is, I had nothing really to “give up”. I was already following a plant based (but not plant exclusive) diet, predominantly whole foods, I was fermenting my own kefir, eating kimchi and sauerkraut, I had a manageable and consistent exercise routine, I hardly drank alcohol. I’ve never eaten KFC, never been to a Nando’s, I don’t phone out for takeaways. I aced my NHS health checks. But I still developed AF.
The fact is, it’s not our fault that we developed AF. It’s not something we did or didn’t do. AF becomes more common with age and we can’t control our age. We can’t control our genes and nobody’s genes are perfect. We all have a different metabolism and a different biochemistry. Our microbiome may be a factor in the development of many chronic conditions, perhaps in AF. We just don’t know, and we’ll never have the answer to “why us?”
All we can do is the best we can manage. We still need to take care of our general health and there’s no one true way that suits everyone. We all know what healthy eating is, and there’s a lot of flexibility within healthy eating guidelines. The problems arise when advertising and marketing promote unhealthy foods as being healthy opinions, and people end up confusing health advice and marketing. We have to be wise to these tricks. Exercise doesn’t need to be sports or high intensity anything. Housework and walking count, it’s more about activity and movement. As long as you find something you enjoy enough to keep doing. Consistency is key. Stress management is also important, and I recommend that you start with simple breathing exercises if you are new to this sort of thing. Sleep is good too.
At the moment it’s Bisoprolol 2.5mg, though that was prescribed to help ectopics before I developed AF. I have taken an extra dose as a PIP to get out of AF, which seems to work. GP said my score for anticoagulants was low so not necessary at the moment, in her opinion. I’m waiting for a hospital appointment, so they may have different ideas.
From my personal perspective the answer to those two questions is yes! I was diagnosed with paroxysmal AF in January 2010. By September 2011 following the experience of some symptoms, diahorrea, burping, loud, and very antisocial intestinal gurgling and massive and very painful bloating (not all together, all and each at random and all and each unpredictable - the bloating would trip me into AF) my GP back in the day had bloods done for Coeliac Disease and IBS. All clear. I then consulted a nutritionist and she helped me with diet, initially, gluten free, wheat free and oats free, but over the following years the diet was widened in scope and produce. I still practice what she taught me but with some stuff I have been able to return to but not all. Still very much gluten free and oats free. I have had no ablation nor a cardioversion. I do not exercise. My meds for AF is Warfarin and Bisoprolol. Other meds are all high blood pressure related.
Eventually, I was freed from the shackles of AF and in the following years from 2011 onward I had one major AF event in 2015 and the next in 2018. Nothing since although during the in between years I get 3 to 5 times a year minor AF events but nothing lasting more than an hour or so ( although one did last 15 hours and wiped me out for a weekend away ).
I do not regard myself as cured ... just bloody fortunate ! My original Echo showed an issue with the left atrium, 10 years later I had another Echo which showed my LA at the same dilation as the first and I am shortly to have a new ECG and Echo ( initiated by by GP not at my request) to see what changes have further occurred.
Someone on this forum (sorry can’t remember who) recommended a book called ‘The AFIB Cure’ by John Day (and others) which I have almost finished. I have mixed views about it. It’s very detailed with some useful information but to meet their gold standard for lifestyle optimisation (to give yourself the best chance of getting your AF into remission or even ‘cured’) is likely to be too onerous for most people and could even be counterproductive for folks with obsessive tendencies or those prone to more anxiety (which includes me!) if they fall short. Having said that if you aim for the lower hanging fruit (many good suggestions in the replies you’ve had) then achieving some of those can only be positive, not only for AF, but your general health.
Just to say Lifestyle matters with AF. Stress Management, Sleep, Healthy Eating and moderate exercise - all help lessen the AF episodes and the their intensity but it takes time to adjust.
The WORST antagonist is worry/anxiety so the BEST thing you can do is tackle your anxiety as a matter of priority. There is a lot of help out there but one of the easiest is learn breath control or take part in any exercise which works with breath. I'm back into my modified Tai Chi which give me gentle stretching and mild exercise with breath control which brings down my stress response quickly.
Anything you enjoy helps - a walk in a green space, listening to music, singing in a choir (EXCELLENT). Lots of things to help yourself and plenty posted on this forum so keep reading.
It's all a bit of a shock and trauma to begin with but know that there are a lot of different treatments and it is sometimes a matter of trial and error which treatment will help you.
Best wishes and don't hesitate to ask questions - you amongst friendly co-sufferers so we get what you mean about the uncertainty and coming to terms with the diagnosis does take time. CD
My wife is of a similar age, on the same meds as you for her PAF, and also can't have any CVs as the one attempt they did put her heart in a dangerous flutter.
Whilst very scary at the start, between this forum and the arithymia nurse we have come to understand and live with it.
In my wife's case her main trigger is an excess of sugar, although episodes can occur for no apparent reason. She will also normally self revert within a number of hours although the longest period was 2 week . When she has an episode she finds it best to not attempt too much and let it run its course.
The Bisoprolol dose has varied, its been higher when episodes were more frequent but that brought the resting HR down too low so by trial and error we have it at a lower dose that still reduces number of episodes but keeps a relatively 'normal' resting HR.
We've not been blessed with grandchildren so appreciate what you have even if you can't be as hands on as you would have liked.
You have some great advice her so i won't give you more, but you can ask anything on this forum even if it sounds daft. Everyone is helpful and we'e all in the same leaky boat. All the best x
Hello. I’m almost a newbie to this forum. I’ve had AF for years, three ablations, different drugs, CV no longer an option - and I totally understand the anxiety/stress thing. I'm so sorry you feel so bad. I’m with CDreamer, do as much as you can to tackle that - it really is the priority (of course healthy life style as well but that’s a given). For me I calm down walking, being in the garden, listening to music. Nights are always the worst so I’ve had to develop ways to ease anxious thoughts. It takes time. Be kind to yourself and gentle. Bit by bit you will start to feel more in control - more you.
Hi there just thought I would share my experience of AF. I was initially diagnosed with AF in 2016 as then a relatively fit 49 year old who participated in a number of sports. The treatment I had then was very good as every test was carried out on my heart and found to be structurally sound with no reason given for my sudden onset of AF. I suspect it may have been stress related as my mother had recently passed and all that that entails. I carried on with life with very few incidents orarrhythmia. Fast forward to August 2021 and again under the stress of my father being diagnosed with terminal cancer I again started experiencing symptoms of AF. Since then the symptoms have become worse with general fatigue, brain fog, occasional breathlessness. I was prescribed bisoprolol and apixiban at this time. My father passed away in January with the AF symptoms persisting resulting in June this year to be taken to hospital on three different occasions. Different treatment in hospital nowadays though. On reaching hospital my SR had returned to normal. ECG confirmed this and as a result no further tests carried out although I was referred to cardiology and my medication changed to verapamil as it was believed in A+E that I may have had a sensitivity to the bisoprolol 1.25 mg as my hr was less than 50. On 4 October I finally attended cardiology. Given my persistent symptoms and not feeling well I wrongly assumed that a number of tests would be carried out to establish if any changes had occurred in my heart. I had an ECG which confirmed at that time I was in SR. I could have told them that. I had a five minute chat with the doctor ( not the consultant I should have seen). I attempted on a number of occasions to explain my symptoms and expressed concern that things had changed with my heart. These concerns were in my mind dismissed and I was told that these were only AF symptoms. He actually told me that I was being discharged. Somewhat dumbfounded I had no response and left the hospital. Twenty minutes later whilst driving home I received a call from the same doctor. He advised me that he had spoken to the consultant and that I wasn't being discharged but would be seen again in six months and that my verapamil medication was being updated. To say I was disappointed with my treatment in cardiology would be an understatement. I am now in limbo wondering whether I have anything structurally wrong with my heart or whether as an AF sufferer I am just left to get on with the symptoms with no further investigation or treatment.
Hi - what a ride so far that you've had. Have you had an ultrasound or MRI of the heart? I'd say you should ask for one if not. I can say from my experience that AF can "get better" at least in the sense that it can come and go a great deal, with long periods of improvement. The last time I had it was June, for example. In the year prior to that it was far more frequent, although I only ever had one serious "attack" of it with a high rate that took me to hospital. All others have been with a lower rate (max 135bpm) and I have coped by taking a dose of bisoprolol.
So, you might well find yours follows this course. It really seems to depend on what is causing the AF, and the chances are, the doctors can never be sure.
Also, you ask about breathlessness. If this comes on with the AF only, then it could be caused by two aspects of AF. One is that the AF (which is a problem in which the upper chambers of the heart - the atria - twitch instead of pulse) is overly affecting the ventricles, the lower chambers, which do continue to pump fairly normally, if a bit too quickly, and sometimes far too quickly. The effect on the ventricular output varies a great deal between individuals but, in your case, it could be that the AF is reducing the heart's pumping ability a bit too much for what the body demands. I've read that some people can cope with quite a low cardiac output ("ejection fraction"), while others suffer if it drops even a little.
Another cause of breathlessness is when the reaction to the AF is to become anxious. Here, the anxiety - which is a natural effect of AF - can act to tighten the chest and breathing muscles and bring on a feeling of breathlessness. This can even cascade into a panic attack and bring on weird symptoms affecting the back, arm, and lips.
Whichever of the two, with luck and a following wind, time will be your helper, as you get "used to" the AF.
In AF constantly … I’ve had an echo & angiogram- plumbing I’m just this “ electrical “ problem.
Just received an appointment for sleep clinic- to test for sleep apnea. Most nights are disturbed and seem to have developed a snore 😴 so see what results show !! Wasn’t aware there was a link…
Apparently 50% of AF sufferers have OSA so it’s a real issue but chicken or egg? The things that accompany AF are high BMI, high BP, diabetes and sleep apnoea. Mind you I don’t seem to have any of those and still get it.
My elderly friend has had permanent AF for many years and remains well but his rate is normal. If he walks a distance he gets breathless but he is 89!
Another, much younger, friend uses his C-PAP nightly for OSA and wouldn’t be without it but I’ve read the drop out rate is very high with the machines.
For some of us there are no obvious risk factors. Even age is no guarantee because AF can happen in young adults too. Lifestyle factors will only make a difference over the long term and if practiced consistently as a way of life, but there’s no guarantee that it will prevent any illness from happening. If people read the literature, they talk of “reduced risks” and that is always in the context of relative risk. There’s no such thing as zero risk for anyone.
That's interesting, AL, thank you. I imagine if a person had always been a healthy weight, exercised moderately, avoided apnoea, hypertension, smoking, etc., they'd be very unlikely to develop AF? But then there it seems to me that there are quite a few people living with undetected pre-existing heart issues - and some of those are never detected even when the AF arrives. I did read an American study which suggested it was still uncommon in young people and that those who do get it tend to have those risk factors.
I might myself have had it for years, it seems, or so the cardiologist I saw said, but it was always put down to anxiety / panic attacks. That always surprised as, although I am an anxious type, the "attacks" came on so randomly - while eating, walking, washing the pots. I'll never know now!
Hello Steve does anxiety cause irregular heartbeats. I have irregular heartbeats every day usually starts during the night and it can be for a long time. I have been given no medication. Apart from feeling horrible, If his keeps up without medication will this effect my heart. do you know. Dont know how to handle. Thx
I’ve had those for many years, too, but since my ablation for atrial flutter in 2019, they have become far worse. I often get hours of them in runs, and worse when I get into bed. I’ve been told they are harmless and have read that that is most often the case.
Hi Steve, does your irregular heart beat stay below 100, mine does most of the time I think,( or sometimes it goes above I would say around 115) its in the 90's - I just dont check it all the time. , but this can go on all night. I just dont know what to do about it. It must happen to many people. I wonder what they take for this. I have tried tapping, rubbing my chest, breathing, moving my arms around, putting cold water on my face, nothing works, Its starting to cause me mental problems. I feel tired out at times from this.
Generally, yes - up to 105bpm, but often 90bpm. Despite not being too fast, it feels pronounced and uncomfortable and feels very much the same whether I have AF or not. I get a slight need to breathe more deeply, discomfort in the lower ribs and back, and feel "not right". Anxiety is a part of it, I am sure, but I am certain it is not the cause. It's worse when I get into bed, but I do manage to fall sleep (not that I sleep well, but that's my insomnia). When I wake up, it has often, but not always, settled down.
It began in earnest in December 2020, about a year and a half after my ablation for atrial flutter. I suspect, though, that it was there all the time, in a lesser form. I was helping my son and his wife move house dismantling a cot - not too strenuous but bending over into the cot - when I found myself feeling odd and had to sit down. My heart rate was 135 and "missing" lots of beats (i.e. premature ectopic beats). I phoned my GP, and he said it would be AF, but my Apple Watch didn't show that. He told me to take 2.5mg bisoprolol and, sure enough by an hour later, all was well. Since then, I have had similar very many times, sometimes showing AF, but mostly not. Tests, including an echo all proved fine, but with some "AF-like activity". I was put on only Losartan but not for blood pressure, which was normal, but for its "cardioprotective" qualities. On top of that, I was told I could take up to 5mg of bisoprolol as needed. In the event, I take 1,25mg and that helps after about an hour. I haven't needed any for a few weeks and am keeping my fingers crossed that it's improved, although I still get many spells when ectopic beats are very frequent. I was told that I have a "wide QRS", which Kardia reports, too, and "left bundle branch block". My GPO said this was almost always nothing to be concerned about. I originally put a lot of this down to gastric problems as I have a small hiatus hernia, but now, after all this time, I am beginning to feel that it's the heart causing the gastric area to feel upset, rather than the other way around.
If I were you, I'd want reassurance by having had an echo scan (if you haven't already had one) and to hear my doctor's opinion.
Hi Steve thanks for sharing this information, I am e mailing the cardiologist because there must be something that can be done. Its funny you have gastric problems, I feel some form of nausea a lot. I dont even know how to describe it. My blood pressure can be up or down- I dont know who looks after this. but I am going to tell the cardiologist. There must be a lot of people this happens to so there are answers somewhere..
I’ve never been anywhere near overweight, BP has always been good, low cholesterol, etc. I also have haemochromatosis which means I have a tendency to high iron levels, and too much iron can cause problems, iron gets deposited in the organs including the heart, and too much iron in general can cause more oxidative stress in the body. I don’t know if that’s a factor in my case, who knows? I think most chronic conditions are probably a combination of tens or even hundreds of factors that may well take many years to manifest. Why are some genes switched on in some people and are never switched on in others? How many courses of antibiotics do we take and how does that change our gut microbiome over the decades? And how does that influence our long term health? Why are some people predisposed to system low level inflammation and others are not? I think these disease processes are more like cascades than a ‘root cause’. I think we’d all like to return to the scene of the crime to find out what we might have done to prevent AF and then try to put things right, but there are probably many intangibles that played their part along the way. That’s what I think and I may be wrong, but if we really could reverse our way out of AF we all would.
That was very well put and explained. Thank you! I suspect genetics and inherited conditions are at the heart of most chronic ailments, but that the environment we live in and through, along with aging, somehow brings them to the fore.
The problem with the heart, as I see it, is that its cells are not replaceable: once damaged, always damaged. There must be an evolutionary explanation for this but as I see it, it’s a strange weakness of our physiology.
I have often wished the same. 😳 One thing I have discovered over the years, though, is that internet information can often be too general and easy to misinterpret.
There isn’t much pseudoscience fluff on haemochromatosis, but there are quite a lot of scientific studies that look at different aspects. I did find one that said that people with haemochromatosis tend to be taller, so I’m typical in that respect, haha. I did find one US alt-health site that basically flogged supplements as some kind of “protocol”, but I wasn’t impressed. I don’t even think the grifter flogging all this nonsense ever had a venesection in his life. They are quite effective in getting the iron levels down. I can’t work out how milk thistle can possibly make any difference. That was one of his recommendations, so I googled some more, only to find a paper which documented elevated liver enzymes in a woman who had undiagnosed haemochromatoais. Well, well, well … this charlatan’s ”cure” turned out to damage the liver, which is kinda what venesections are supposed to prevent.
My alt-health-disciple friend really believes that I can get my iron levels down “naturally”. Yet at the same time she will tell me not to eat this or that …. because antinutrients! I don’t take any heed of that, I’ll drink tea with a meal and eat lots of beans and whole grains and leafy greens, and all those OMG antinutients! And guess what? My iron levels still go up! And that’s one reason why I pay no heed to the antinutrient hype, or the scary lectins or whatever fad of the week. I actually think we should enjoy our food without being terrified of it.
You sound truly positive and well informed. Life throws lots of wobblies at us and some get fat more than their share. I just wish some clever devil would invent a youth serum as getting older is not proving to be a smooth ride!
I had a thyroid scan before and it all looked fine. I don’t think it’s a concern in my case, but certainly something to be considered whenever someone develops an arrhythmia.
That’s interesting, Joy - thyroid isn’t usually included in the issues that accompany AF in the clinical trials I’ve read but, you are surely right. I’ve long suspected that the thyroid might be more important than is generally realised. There seems to be no general consensus on what constitutes a shortage or excess of thyroid hormones, either.
it is always listed as a condition causing AF and that is what caused my Ischaemic Stroke Embolic type.
My Carotid arteries were completely clear.
NO THYROID TESTS showed anything wrong. Only swelling profusely
and stopping no energy- told oxygen with AF nor circulating.
Put on Metroprolol which I didnt want at 1 yr 3 mths on 24hr monitor at night showed 2 pauses of 2 seconds. My H/R night is 47. On Bisoprolol none showing and finally on CCB Diltiazem 120mg am and 2.5 Bisoprolol now CONTROLLED DAY and NIGHT no pauses.
I read that my heart could reset itself but 3 years and it hasn't. And the national heart specialist found that I have a soft systolic heart murmur. No one else diagnosed it. No conversion or ablation because of enlarged chamber.
Back to thyroid if you read about it this organ systematically functions every type of body event.
Yes, I take Synthroid the synthetic hormone daily to live.
No 2 neck scans clear. Declined RAI Radio Active Iodine and being in
suppression. Maintain TSH2.0. UK has it so wrong.
Thyroid thyroxin should only be used if TSH carries forward from level of 10 says Mr Gary Clayman USA top Head and Neck specialist. Both my surgeon and I follow his recommendations.
All AF patients should have a scan of their thyroid.
That was all very interesting. I knew that the thyroid was at the heart of many of the body’s metabolic processes but it rarely gets a mention in studies that give a list of conditions that accompany AF in the studies. It seems like it’s up there with sleep apnoea and the like.
Surgeon wants me and I read GARY CLAYMORE's direction which is to keep it "not too low of normal or too high of normal. Gary wrote The Atlas of Head and Neck. I read my operation after the operation. Very interesting. My surgeon put through a BLUE thick dye before my operation. At 20 minutes it was already in my bladder. Prior to this I had 1.1/2 bags of saline.
I changed to Synthroid as it was easier to keep the level of TSH 2.0.
Advantages of Synthroid are
Kiddie lock.
Keeps out moisture by a capsule
Has the expiry date on it.
I keep to TSH 2.0 by taking 125 daily under tongue.
I need a 150mg perhaps 1 per week for 3 weeks of a 4 weekly test.
I managemyhealth and stand up to even 1 person in my triage team.
Then at my clinic I have changed from Drs who do not do what I want.
To better explain when my med was changed from hospital to hospital was wrong so I wanted it put right.
On another Dr told me to stop my BB Metroprolol as I was complaining away the side effects. Then on return I told him that my chemist said not to. Then the Dr said it was just as well as the other a gent ended back in hospital!
Honestly. We need to check and recheck.
I manage my thyroid tabs. I now write Ca Thyroidectomy and level 2.0 TSH is optimum level.
I an glad you love my New Zealand. Off to Mahinepua for Labour Weekend in the van One of our NZMCA rallies at the beach on the scenic loop road.
Yes, thyroid problems are definitely implicated in heart arrhythmias. My thyroid function is very good, however. So yet another non-risk factor for me, but it definitely is a risk factor for many people as it was one thing my consultant mentioned.
Thank you all for taking the time to respond, share your experiences and wisdom.
Family and friends are still in shock and while being very supportive are lacking in knowledge and understanding of what’s going on in my head … but it is such a comfort to find people who are going/ have been through similar experiences.
Learning to be more patient, and focus on what I can do rather than what I can’t.
Hi Mrsd. Welcome to a fab group. We all struggle in our own way so yes we understand to some extent. I've had Afib for 25 years + . I have 5 grand kids and love being a nanny but there are days when I'm a 'slow' nanny . I remember trying to walk up some stairs with my 4 year old granddaughter and she asked why I was so slow. I said I was having a slow day and that nanny needed to take her time. She, bless her, put her little arm around my waist (well as afar as she could reach) and helped me up the stairs telling me 'you will be ok nanny, take your time' . We are not' supernannys ' but just nannys with super big hearts because we love them so much we want to be hands on and that could just be reading and drawing with them. I love singing and I was given a poem by two of my grand kids thanking me for singing to them. Nothing operatic just kids stuff that they love. And on that note I find singing brings me such joy even when I cant get a lung full of air because it relaxes me, even humming to a song or softly chanting. Yoga is a good exercise I find as I can adapt it to how I am on the day. A day in sinus is a gift as I'm in Afib more often than not and it can last up to 36 hours now. Please enjoy your good moments and try to be adaptable on at other times. Dont take on any more than you can comfortably do with kids and tell them and your own kids 'it's a slow day today ' you have done the hard stuff bringing up your own kids, it's time for gentle activities when your heart asks for it. Hope this helps. Be well
You have excellent contributions here from Autumn_Leaves, CDreamer, carneuny, and others.
Can I especially mention the importance of gaining some insight into your blood vitamin and and mineral levels and the possibility of deficiencies (if any) being implicated in your AF events.
In regard to Vitamin D and Calcium in particular I must recommend the outstanding inspirational testimony of Stephen Carr. It is found online here ...
While we aren't all as gifted as Stephen in pursuing the elimination of AF from our lives, his example certainly inspires me.
Re your mention of being in constant AF, you will gain great wisdom and insight by reading the past and ongoing Posts of MummyLuv. I hope she replies directly to your Post, but you can easily do a search on the Forum site to find her Posts.
Having two decades working within A&E I have lost count of the number of patients I or my colleagues have resuscitated or attempted to, either by defibrillation or CPR. I have also cardioverted many compromised AF patients within resus. Occasionally (rarely) if the defibrillator is not synched, you can have a malignant arrhythmia as the hearts conduction system is at a vulnerable point when an un-synchronised shock is delivered. VT or VF can occur, the former with or without a pulse. The key here is your prompt resolution of your cardiac arrest.
The reason for the above:
I went into unexpected AF- probably latent AF maybe viral aetiology. A subsequent echocardiogram showed reduced <40% ejection fraction. This frightened me as I was breathless and slightly dizzy (it was during this summers heatwave) A subsequent cardiac MRI showed improvement. Amiodarone and DCCV back into SR.
A stress echo and CT Coronary angio demonstrated a reassuring picture and subsequent PV ablation 2 weeks ago I have worked hard on the mind-body connection. I have today been for a gentle swim and over last three days increased the walking. But I am keen not to rush back.
On Ami and Apixiban for the three months post and I am aiming for a return in January to contact sports, but gently increasing the exercise til then- It is paramount for my MH.
Because I am a resuscitationist within A&E, I always see/saw the worse case scenarios, and when AF happened to me I immediately saw the worse case scenario for myself. However I was overthinking (this forum has been fab) as I tried not to correlate my clinical practice with my personal journey. I am less worried now.
Enough about me, but I wanted to show that you are not alone with fears and worries.
Looking at your post there are a number of reassuring points:
Your plumbing- I assume the coronary arteries are reassuringly good, take that as a positive. Less likely ischaemic heart disease as an aetiology.
You are gradually walking (Bear in mind whatever cardiac arrest aetiology it can take significant time to recover initial baseline-The heart gets a bit annoyed and even at a physiological perspective the myocytes/muscles of the heart get blunted- even post a 'normal' Cardioversion/ablation) There is PubMed evidence about rise in Troponin and CRP post these procedures-Quite normal. From what I understand it is still 5-6 weeks post arrest.
Just gradually build up the walking- Mix distance and intensity to give more variety.
Working on a healthy BMI is great-don't overthink it, but correlation with OSA and raised BMI is believed. The above posts re dietOSA etc are great.
You are likely (Please see a Dr F2F etc to confirm) to be suffering a psychological burden from the events, particularly the arrest, you must care for the mind and body- IAPT can help (Sometimes you self-refer depending on location).
The breathlessness maybe AF linked, but getting a formal echocardiogram will also ensure no valvular dysfunction or muscle impairment. A cardiac MRI can help in some circumstances.
I hope that helps you, and regardless of personal backgrounds etc we are all in need of reassurance and support, however big or small the worry.
I think individual care is required in each patient. Quality of life verses risk of stroke for example.
The CHAD-vasc score is a useful benchmark for AC, but being on or off AC would involve a significant discussion with the prescriber.
Head injuries with contact sports like myself or even falling from a horse would require potential medical evaluation and guided by a) injury sustained and b) NICE head injury guidance.
I would prefer to be off AC once the ablation 3 month period is up. But then I want to get back to sparring.
For yourself it would be age, reasons for AF, and sex (1 point for female) on chadvasc
Ultimately I am not replacing your Drs advice but I would be guided which gives your best quality of life whilst mitigating risks of AF and stroke risk
I’ve read what others have said and there’s one thing I am wondering….that’s how high is your bisoprolol dose? I ask that because in my experience and I’ve noted others in here too, that higher doses affect energy levels. Mine wasn’t that high, 2.5 but reducing it to 1.25 made a diference. Just an idea.
as for walking, I found myself a circular walk in morzine with a cafe in middle….try and get a walk where u can stop recharge and thrn continue.
Days you feel you are pushing it too much, stop before dont push.
We have all been in those early days when you do feel that “ is these really it.?” I would say, In answer to When u asked can it get better, I would say yes, and I’m glad folk in here said that to me when I was so despondant in my early days.
Ablation a year after my shenanigans started has been good for me, I know it doesn’t suit all but it’s certainly worth a go, nothing to loose eh.
At the moment you are so heart aware we all are/ were/ but in time it doesn’t seem to dominate , I was constantly on the heart Kardia, it’s in a drawer somewhere now not used…..
Don’t give up hope, do the excersise, a flat one, and try to find a walk with a cafe…ha ha and loo!
As fir bisoprolol if your dose is high try asking about a reduction, mine made a huge diference.
interesting that reducing bisopol increased energy levels - I refused to let GP increase mine at last visit. Was initially on 1.25 then jumped to 5 mg after cardiac arrest and GP was keen to increase again but I wanted to see the impact of 5 mg for a bit longer.
Now 3 years down the track of STROKE with AF, Rapid and Persistent HR day . 4 days into hospital stay a carotid arteries scan showed a shadow on thyroid. So with my triage teams arguing at wanting to leave me for 6 months to have thyroid out with all the lymph nodes out on right, my surgeon and anaethestist won for my to have operation a.s.a.p. 4 months later it was all out.
On Metroprolol I was breathless and fatigued day avge HR 186.
Demanded to see a heart specialist who immediately changed me to Bisoprolol. Apparently it is safer with AF. 1 year 3 months.
My day avg on 24-hr monitor was now 156 day and night stayed at 47.
Left there my breathlessness had gone but energiless (no energy on exertion and sweating).
At 2 years 3 mths I was advised to go to a private specialist by a new locu who had had AF.
I did and was immediately controlled by CCB Diliazem (180mg too much) 120mg with Bisoprolol 2.5 at pm.
Slowly I have gain some energy back. No more sweating too.
AF can be caused by inflammation in the body and I had my J&Johnson TVT mesh kit partially removed in March 2022. The surgeon said lots of inflammation throughout pelvic area and damage was put right.
Now at 3 years I'm increasing my walking. But still have evidence of tiring with load or elevation.
No ablation for me as I have an enlarged heart chamber. I dont feel the AF.
Be patient and it seems that you need a specialist who forms your history and goes carefully.
On CCB I have BP 123/72. HR DAY 77-88... NIGHT 47
My TSH Thyroid stays at 2.0 where my surgeon and Mr Gary Clayman direct best.
2 scans now of neck. no cancer.
I refused radio active iodine and a state of suppression. I was LOW RISK.
Now LOW RISK patients can adhere to the above!
So we are all complicated and different.
Take care. The last specialist noted A SOFT SYSTOLIC HEART MURMUR.
Explanation of energy loss is that the oxygen in blood is slowing with AF.
Hi Mrsd - what a trip but thankfully you’re here to tell us your story 😊
I’m lte 50’s and AF struck at 40ish and during that time I’ve had 2 ablations (having a 3rd next month 😱) and 2 CV’s this year. I’m on the same meds as you and similar symptoms to you. I’ve found Decaf, low salt, no alcohol & weight loss have really helped. Previous ablations together with Flecainide have converted AFib to AFlutter so EP feels better chance of treating successfully this time. I am actually more breathless when the BP is too low but pulse is fast but similar if it spikes higher than Drs want it. You may already be monitoring your own BP but perhaps (as happened with me) my weight loss seems to have required my Losartan to be lowered and split from daily to twice daily. Obviously don’t alter meds yourself but monitor BP may give Drs an idea of issue. I wondered myself if the exercise with fast but inefficient heart action affects the oxygen circulation hence breathless - I’m asthmatic but know my lungs are clear and this breathlessness is different. I’m not diagnosing but just wonder (actually forget to ask that every time I go to appointment)
Hope you get sorted, no more scares and some normality resumes 🤗
good idea to monitor BP - was doing it twice daily for a while but slipped out of routine - got an apple watch and monitor heat rate. Need to switch of the AF detection - I keep shouting at it “ I know “ !!🤣
Hi there. When it comes to a fib we are all nubies because it is always changing and different for all of us. You have had quite a time already you have to remember to take one step at a time but that second CV would scare anyone. Just remember you are here to talk about it so that’s a good thing. I was supposed to have one long story short I didn’t get it Now I’m kind of glad I did not because from what I hear there’s more of a chance they don’t work than they do. What you went through reminds me why I am afraid of it even though the doctors make it sound like it is not a big deal.
I just had my third ablation. My first worked for six months it was a cryo-. I was told it’s a one shot deal. The second lasted a year and a half that was RF my last one was the end of April I feel it was a total failure it was a new procedure only a few years old pioneered by my doctor and I have mixed emotions right now I feel as though I’ve been used as a guinea pig. Right now I’m trying to decide whether to go to the ER or not I am hoping my primary physician calls me first but a few days ago I started with a very high heart rate. A few minutes ago it was 168. I tried a couple of things that are supposed to help lower it because right now I can’t even walk without things being blurry and a feeling of I’m about to go down. So I am laying down waiting for my cousin to come home from work. It’s frightening I don’t want to go to the ER because of all the extra cost and I don’t feel they can do much except make me comfortable. I am in a transition to a new doctor and see him Monday. At least if he decides to put me in I would feel better about it. My insurance itself is good but when it comes to the ER because of so many people over using them it is expensive. I don’t want to waste money I don’t have
you are a trooper. As far as the breathlessness I don’t think any of us have an answer yet. I just tried a couple of things to bring my heart rate down because it was 168 not that long ago today. One is drinking cold water the other is to hold your breath as if you’re holding back a sneeze hold your nose and close your mouth for about five seconds then release then do it again. I’m not sure if it did anything I’m not getting up right now until my cousin is home I’m a bit nervous at the moment
they had to paddle me during my second ablation and no one mentioned it until I asked what the rash pattern on my chest was. That was a heck of a way to find out. You can be a glass half empty or full I am saying at least I’m here to complain about it lol. One thing I have discovered in the last two years with a fib is that expect the unexpected. Whatever is going on with my high rate I don’t know where it came from. The one thing helping me right now it’s knowing I will see the cardiologist Monday I hope I like him.
just remember you’re in with a group just like you here and everyone has input there’s probably someone here with anything you come across. That’s how different a fib can be. I don’t understand some thing that hits so many people just like cancer and yet they don’t have answers yet. Again I had to say how impressed I am with you going through that CV
I have had 17 cardioversions in the last 2 years, and not had any problems. After each one, it was as if I had woken up from a gentle nap, thanks to the sedation. They all stopped the afib, but afib returned. Had an ablation 2 years ago, after the 3rd or 4th afib episode. I am scheduled to have a second ablation, different EP in 2 weeks. Could have had it done sooner, but doc was on vacation, and this was an opening he had after returning. It's only about a 3 week wait for me since last afib episode.
You mentioned being SOB in your post. Do you check your heart rate at that time? Every episode of afib I've had has had SOB and heartrate of 120-140+. It might be a good idea for you to let your doc know about the SOB and/or get checked again soon.
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