I was diagnosed with persistent Atrial Fibrillation 2 months ago. I had blood test, echocardiogram and I managed to see a cardiologist privately… The result of tests is that I’m completely healthy and my hearth structure is normal. My heart rate is in acceptable range and my blood cloth risk is very low, so I’m not taking any tablets. I’m 38 years old and I have a very healthy and quiet life style.
I’m writing because I initially struggled to accept it, now it’s better but I still have moments in which I feel like I’m the only person in the world in this situation. If I look for information or suggestions, nothing applies to me because I’m so much younger than the usual age bracket and I have no idea how this will develop or what it will mean for my future.
The cardiologist was super positive and he said I had nothing to worry and my life expectancy will be the same of a person without afib. At the same time we decided to try a cardioversion and see if it reverts, as I have no idea when this started and if it is already permanent.
At the same time I got this diagnosis I had just started my new job. The private insurance refused to cover, arguing this was a pre-existing condition, although I was insured with them since almost three years. So I had to deal with that too, which is now in the hands of the financial ombudsman.
I’m looking for other young people in a similar situation or for groups/organisations that support young people with afib.
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You are not that young in reality. OK yes AF always used to be considered a condition of older age but life styles and the changing world has made that untrue. I think the youngest recent newbie was 19 ---maybe last week but could have been week before. Atrial Fibrillation Association who support this forum cater for all ages.
Thank you for your answer. Could you point out links or info about afib in young people?
Mine is not related to my life style, so there is nothing even health professionals tell me except “do nothing about it” basically. I wish I could know more about why I’m in this situation and what to expect, for example in 20 years or so down the line. Will it affect the structure of my heart? Is the heart rate going to go worse (as I read most of people with afib have a fast heart rate)?
I don’t know if I’m too old to comment (I turned 44 last week) but I had symptoms of AFIB at age 40 and was diagnosed at 42.
If they’re not giving you any medication then it’s a good sign - I was in permanent AFIB and was immediately placed on blood thinners and a beta blocker. I’d gone from running 5 times a week to becoming really fatigued at the slightest activity. The cardioversion was amazing but it only worked for a few days and I went back into permanent Afib. 4 ablations later (and a cardiac arrest, I’m told not related to Afib) and I’m hoping it’s finally worked. My heart is structurally healthy with no blockages. I love a healthy lifestyle too so the docs were baffled as to why it was happening. It completely changed my life but I feel like I’m coming out of the other side now.
If you have mild Afib then you may find it won’t affect you too much. Keep us posted!
I’m sorry to read it had such an impact on your life I have no symptoms and I carried on as usual but with massive anxiety. Sometimes I wish I just never had found out about it.
Slightly outside of your target demographic at 43, but I totally relate to what you are saying. Ironically I was in the midst of a health kick when I was diagnosed in Jan 2023. Lost 2.5 stone, exercising daily etc, then following an Afib episode and being diagnosed with Paroxysmal Afib, I was terrified to exercise for months, terrified to eat big meals, just generally anxious about life 🤦♂️
Rest assured things got better. I accepted it, had more faith in my body and specifically my heart (plus Flecainide!) and now although I have moments where a little flutter will trigger some anxiety, I don’t let it beat me anymore and restrict my life.
I hope your mental health is okay with this little bump in the road x
thank you for sharing, that’s exactly what I mean. I added the age just as an indicator, as people 60 years old are already too young for afib but still with a life style very different from mine.
Honestly, I think my mental health is copying just about with this. My sleep hasn’t been the same ever since I was diagnosed and some days I really struggled to get the thought out of my mind.
Of course you think that you are too young for AF at 38... But, look, I believe we had the case of someone's granddaughter, diagnosed with AF at 9 yo, who had to wait till 12 yo to be allowed to have an ablation. Still think you are too young...?
BTW, your being free from symptoms means that your heart is sound and switches easily from one way of working (normal), to another one (ventricles work alone, without the cooperation of atria) and vice versa. In such cases, HR usually remains below 100 when in AF, what is also calming, compared to 180+...
If it will help you further, I firmly believe that there are large number of people who live with AF, who have no symptoms and never get diagnosed or treated (medications). In a research, with screening the population (Denmark ?), it has come out that 40% of the sample had AF, without knowing it at all. No need to be worried - of all the evils of this world, AF is a little one (unfortunately, not for everyone).
sorry I didn’t mean to create a competition to who’s the youngest. In literature all cases below 65 are considered to be “too young” and afib is no where reported as “expected heart working condition”. Therefore I understand that 1. There is a problem and 2. This is very rare at my age (of course even rarer in a child and I know not impossible, and again not right either). I feel very sorry for the child, but I don’t think belittling my point of view (because I’m not young enough to complain?) is helpful.
My heart doesn’t switch anything, as I’m in permanent and I don’t know since when.
I understand I could have it worse (everything can always be worse, no?), I just want to know if there is any support for young people. I volunteer for Versus Arthritis and they have a whole set of support material, groups and volunteers for teenagers, people below 30 years old and so on. And it is well know that the same problem affects different people in different ways, imagine people at 10 years old, 40 or 80, I think it’s quite obvious. Same goes for medications and treatments, the body of a child or someone twice my age are different…
Jesus, I wanted to show you that the situation is not so dark as you see it ( "I feel like I’m the only person in the world in this situation").
AF usually starts as paroxysmal, meaning that you have it from time to time, as separated bouts. Hard to believe that you have jumped into AF and remained permanently in it. Did you notice "switching"? No! My son, who is 3 years older than you, switches from NSR to AF without noticing anything - he even did not know he had AF, I caught him by forcing him to take his BP in several occasions.
As for the elderly generations, we grew up climbing the trees and not like young generations, holding cellphones in the hands for the whole day. Younger ones are of the poorer physical performances and that is, unfortunately, true...
Doctors seem to be puzzled when they see someone like me with permanent afib, and they don’t seem to have answers or explanation. I’m happy that this not common, but it also means that there is less research and know how. Luckily the cardiologist was very positive about my case and that helped, I’m not so worried anymore. Thankfully my physical performances are very good
Don't apologise its perfectly normal to have these questions and anxieties, I'm recently diagnosed but 59, I felt the same as you, I had cardioversion last week and feeling good for now, you'll find most people on this forum friendly and informative 😀
I fail to understand why you don't want to listen to advice from older people with a greater experience of AF. Most young people will know little about the condition the same as you. Mine started at age 54, but I know I had it long, long before then. I thought everyone's heart behaved as mine did. I've now been diagnosed for 18 years and have learnt so much about the condition over that time.
Here are some tips I give to newcomers to the forum:
1. Be Aware you are most unlikely to die from Atrial Fibrillation (AF). I used to think that the way my heart bounced around some nights I would surely be found dead next day. Still here though!
2. Changing your diet to a more plant based one, avoiding any foods containing artificial additives, not allowing yourself to become dehydrated, cutting back on sugar, alcohol and caffeine, also losing weight (if it's needed) will all have a beneficial effect on your AF. Artificial sweeteners were a sure trigger for my attacks. How I wish I'd known all of this before having any of my ablations. Would I have listened if anyone had told me? Probably not, because I believed ablations would cure me - three didn't! They have helped some people though and my AF now is not so severe.
3. This is a hard one, but looking at gadgets that show your pulse and AF will make you anxious and anxiety feeds AF. I was obsessed with what my heart was doing for about the first ten+ years of my AF journey and my attacks were so debilitating I'd end up in a hospital ward, it has taken me a long time to take my mind off this subject and get on with living. The less I think about it, the better I feel. Now I used to feel cross with people who suggested I stop looking at my pulse rate machines, I thought that their AF couldn't be as bad as mine and they didn't understand how poorly attacks made some of us feel. I would get cross with anyone who said they could still go on holiday and carry on life as normal. They made me feel evil, by not understanding how ill I felt! In our minds AF is only as bad as we have experienced, for some attacks are mild for others they're more severe.
4. Make sure you don't slouch, or unwittingly do shallow breathing while watching tv or if you're online. If you do your heart will protest. Also avoid tight clothing around your waist.
5. Try supplementing with magnesium, any type except oxide (I use glycinate from YourSupplements and also take taurine, zinc, vitamin B complex, D3, K2 & C). I feel fine and there's little I can't do now, despite being in constant low rate AF. Or at least I think I am, I don't check these days.
You have been told that your heart is in AF, but beating in a normal range which is usually between 50-100 beats per minute. You are very lucky to be in that safe range. Have you had an echocardiogram where they look at the function of the heart?
How are you feeling physically, apart from angry that you have this annoying AF?
At first it's a lot for anyone to take in. I remember I knew nothing at all about the heart, had never given it a thought. My family were prone to cancer, so thought that was the threat hanging over me.
I was prescribed daily Metoprolol and when the consultant in A&E gave them to me. I was bewildered and asked why I needed them saying to her that I may never have another attack. I agreed to use them as a PIP, but didn't have another attack that year as far as I can remember.
Jean. I was diagnosed at the age of 72 after life threatening Pneumonia but have been one of the lucky ones as I could go a year without an episode but like us all at the beginning it's a very frightening diagnoses and my "heart" goes out to people so young. It must feel like a life sentence having to try and adapt their lifestyle when at that age " Life is for Living" . Bringing up young children with all the stresses and strains that brings . Hopefully they will get all the support they need and realise that it isn't a life sentence and with a little modification they can lead a normal and healthy life.
Hello Enrica and welcome. I know it must feel all wrong to be in your late 30s and be diagnosed with a long term health condition.. In your case Afib. And naturally you want to link up with others of a simular age to share and compare. Unfortunately I'm not aware of a group like you are seeking. On here there is a mix of age ranges. What they all have in common is Afib.. From the replies I see there are younger folk responding to you which is good. It must seem unfair to be diagnosed with this at 38. We are brought up to believe that we won't be affected by health conditions until we are much much older. Sadly this is a myth. There are many people of your age who have been diagnosed with a variety of conditions. Being diagnosed with a long term life condition brings you face to face with the fact you are not immortal.... That we all have a life span. It's a shock. No medic has told you that your life span will be shortened. Infact the truth is there Is no one out there who can predict your life span and how your health condition will affect you in the future. There is stats but stats can be manipulated in all sorts of ways.
In recent years there have been new developments to help manage and improve Afib or even resolve it!! . This was not there a decade or so ago. I say this because medicine moves on and when you are trying to second guess how you will be in 20years you will need to second guess where medicine will be by then too.. There are some amazing things being developed currently.
So rather than see outcomes of Afib as a static inevitable outcome. I hope that you can also see that the face of Afib is changing due to new approaches and techniques evolving. You will drive your self mad trying to predict what you may or may not be up against in 20 or 30 or 40years. I learnt many years ago to take each day as a blessing a joy and a gift. I know that sounds glib.. At the time I was in my early 40s and was diagnosed with something for which there was no treatment and little understanding and certainly no options. It was a massive shock. However I did not follow the predicted path but got better & have done far and away miles better than any stats out there. .
I'm now nearly 67 and my life course has followed a very different pathway to any of the stats out there which were negative and doomed..
So you do need time to come to terms with your diagnosis the loss of the myth of immortality but remember you do have power and no medic or stat out there can predict the force of individual human will to overcome obstacles. So please dont underestimate your own individual ability to have an impact on your own health. In addition overall Afib has a good life span prediction.
The anxiety you are experiencing is shock. Shock of discovering what you thought your pattern of health would be, isn't the case. This is at the heart of your anxiety. It's understandable but though you don't feel it it is one you can overcome and will. Big hugs....
Hi, my best friend was diagnosed with arthritis at 26 after struggling since she was a child. My father died suddenly at 61 (not heart related). I never thought I was immortal, I’m really not like that
My anxiety is triggered when I see I can’t have an insurance for critical illness on my mortgage anymore and I have double working hours with all the doctor appointments and they just tell me to ignore it and I can’t find anyone with the same I have so I do think the docs don’t have the whole picture or can’t be bothered because we are less than the 0.5% of the population.
I’m just looking for people in a similar situation (and similar lifestyle and needs) so we can share info and experience.
Apologies Enrica. I misunderstood.Well you are on a site/group where we all have Afib. There are many of us in a simular situation re our health over Afib but less of us can age match you. Does that matter? . Is it America where u are? I'm in the UK so we can access medical help through our NHS but may wait a while to be seen. I don't have to negotiate health insurance people. Im not aware of mottguages here that include ill health coverage.... That's something we have to take out seperately. A lot of health insurances exclude pre existing conditions..
NHS didn’t even assign me a cardiologist, but only a nurse which I’m yet to see. Luckily I could afford to pay privately for cardiologist, after the insurance wrongly turned me down. The GP just told me I was at stroke risk and sent me home, then said my blood “was all good” and do nothing. After me calling other 2 times, with enormous waste of my time, he sent an email where he explained my stroke risk was low, the reasons and comments on my blood values… anyway at least that’s done now.
Yes, I’m looking for cases that are more comparable to mine. It’s plenty of literature and material about afib in over 65 years old, there is nothing about people like me. Even the medical personnel is not trained for it. During the echo I had even the technician puzzled asking “what’s happening? Are you nervous?”, me “no that’s just my heart, it’s always like that” hahah I can’t believe they’ve never seen it. Or they try to convince me that I drink too much, unfortunately for them I don’t drink at all, so no space to convince me about that. I’m so not what they expect someone with afib to be, and I’m not sure that’s good.
So sorry to hear how you have been treated. Just not good enough. I'm surprised your GP didn't refer you on.... And then to be seen by a nurse. Nooo. Poor you. I don't think it's your age that's caused this poor treatment but a strapped NHS. I'd definately be doing some research to find a better cardiology dept on the NHS and ask your GP to refer. You are entitled to a second opinion. As its persistant you are probably best seeing an EP because they specialise in heart ayrrthymias. That's what they work with day in and day out. Your more likely to get a much more thorough assessment and explanation plus your options can be discussed fully.
I hope you win your battle with your insurance claim. Terrible how they try to weedle out of paying out.
hi Enrica you say in your post you are persistent AF and in a reply mention permanent AF. Does your AF come and go with sinus rhythm in between? Have you had cardioversion or does it flip back to sinus on its own?
My experience I was 35 when first diagnosed then approx every 4-5 years another episode then back to sinus. I am 65 now and last episodes in August and December. I have triggers, too much wine or coffee than exercise within a day. Now I can add rich food and too much refined sugar to that list.
Hi, I’m in persistent. The cardiologist is not sure if permanent because we don’t know since how long I have it. My lifestyle is very healthy and all my tests, including blood showed that. So I don’t have much to change.
Are your doctors suggestion anything to get you into sinus rhythm? You mentions no medications? That all seems odd. Most of us start out with proximal AF.
yes, I’m waiting for cardioversion. But because I don’t have symptoms and my general health at this point is very good, cardiologist left the decision to me, he said I can also do nothing.
please don’t worry. I had fainting snd fast heart rate when I was about 32-33 (about 1970s normal lifestyle two children snd work. Sent to St George’s tooting and diagnosed with what they thought was syndrome X
When I fainted over my typewriter a few years later, more tests still syndrome X, but over the years technology I guess improved snd then in the 90s decided I had afib. Now I’m nearly 80 and 🤞still here.
Try not to worry as we on here have probably been through the same anxiety as you are going through now.
Hi, I'm 48 now but was 29 when symptoms first showed themselves. Took well over a year to get diagnosed. Back then, at least for me, AF was largely dismissed as just a nuisance. Now there is greater understanding and information sharing about the short term impact and long term risks. This is helpful in the main, and can prevent some of the issues I now face, but can also cause anxiety. I have been in persistent AF for over a decade and because it was untreated it has caused structural issues so it's good to hear your heart is otherwise normal and working efficiently. This is the main thing. I'm not a medic but based on what I've learned from my experience and through the medical advice I've received, if you can now keep your heart rate reasonable low (below 90 ideally) either through lifestyle or through treatment (or both) that will help considerably both in terms of the impact on your quality of life and the longer term risks.
I've had cardioversions and ablations and they are not as scary as you might think and can be successful to the point of life changing for many.
I've often felt a support group for younger folk would be useful, as you do feel in the minority and there are different challenges to navigate, but I don't know of any sorry.
Hey Erica. Diagnosed at 39 now 43. Apart from the occasional ECG (I still have SVT) life is perfect. Double ablation back in 2020 sorted me out. Yes I have an increased chance of it returning but I am aware of it now so it’s all good. Happy to chat privately if you would like x
Hi Enrica, it’s never a good time to learn you have a heart problem. I was 8 when my mum tried to explain to me how I was a bit “different” from other children because I had a heart murmur and hole in the heart. I went around feeling “different” for years after that, even though I was symptom free! After surgery age 15 my heart was fine and normal, though it took many years longer to feel “normal “ psychologically. I was often uncomfortable in myself throughout my twenties, experienced panic attacks and convinced myself I was about to die. In other ways I was bold and adventurous, but the anxieties lingered and I found counselling very helpful. I’m now 70 and last year was diagnosed with persistent Afib. It hit me like a freight train, knocked me back to the old terrors (minus the panic attacks thank God!), and I constantly wish it away! But this forum has helped to get things in perspective. I entirely understand your need for a young person’s Afib forum. I’d have wanted that. It’s bound to be a different experience when you’re younger because anything to do with the heart plonks you bang in the middle of a mortality crisis and that’s going to be different for a 38-year-old than it is for a 70-year-old. You could always try setting up a new forum, but believe me the rest of us would miss you! So please keep us posted here and good luck with your journey.
Regarding the psychological side I understand is not good news at any age, although for my experience in volunteering I know that the mental health with long term illness is also affected differently for different age brackets. It’s amazing you managed to cope with such a weight at a very young age, when all your peers had much less heavy things to worry about.
Hi Enrica I can completely empathise with your situation and anxiety about the diagnosis as I am 54 and was diagnosed with permenant AF in my late 20's but looking back had probably had it since my early to mid 20's... so have had this now for over 30 years I reckon.
Like you I have had a perfectly normal healthy heart structure apart from a fast heart rate and minimum risk of stroke (even now that applies to me I have been told) and have been able to carry out normal activities without any problem all this time including running half marathons, walking up and down mountains, strength training regularly, getting married, having children and very soon becoming a grandad so basically I have been lucky enough to lead a perfectly normal life, all without being prescribed any medication at all. I have had a couple of failed cardioversions but that's it. Like you I was told to forget about it and just get on with life, so I did.
After 30 years of it my heart is now starting to show some signs of wear and tear, the symptoms quite mild but were recently (last 2 years) starting to worsen a little with breathlessness when running so got a check up with a cardiologist and was told my heart rate was too fast and due to this I had a fatigued and leaky left valve. Since then I have been put on rate control meds and had this monitored and only last week after an ultrasound was told my heart valve had rectified itself and was now fine and due to the rate control meds my heart is no longer racing away, I also feel fine again. How much of the water and tear is down to the condition and how much to just growing older I don't know. I know plenty of people who don't have this condition who are in far shape than I am.
I hope this helps a little. It's very frightening to be told this diagnosis at any age but it sounds like you may be like me and be one of the lucky ones who is still able to carry on with a perfectly normal life. New advancements in technology and understanding mean hopefully further down the line there will be much better procedures in place to hopefully cure or at least improve peoples lives.
Look up Mummyluv on here as well, she has had persistent AFib and her keyhole heart operation got rid of it completely so maybe you could look into this procedure a little more as well if you want to go down the route of getting rid of it.
Regarding support groups there are none as far as I am aware of exclusively for young people but there are plenty of general ones for Afib, I struggled with this for years to get info until the internet came along. Try facebook groups, British heart foundation, use this forum etc they may be able to be of help to you.
My advice is to stay fit where possible, eat healthily, keep stress to a minimum where you can, have purpose/goals and incorporate deep relaxation into your life through the great outdoors and some meditation like activities to chill the heart and soul out. Learn about the condition, the options available to you to treat it (if needed) then get on with enjoying your life, don't let the worry of this condition start to obsess and drag you down as you will miss so much, especially as you are still fit and healthy by the sounds of it.
hi enrica, I was officially diagnosed with afib at 45 when it was finally caught on ECG at hospital. but I reckon Iv also had it since my 30s but could never get it caught on ECG.!!! Iv also had palpitations and missed beats since my late teens.! Same as you my heart is structurally normal, Iv had 3 ablations and am alot better than I was. I’m now in my mid 50s still working and enjoying life. You’ll be ok. Keep active and take care of yourself eat and sleep well.👍
Hi, sorry some of the replies seem rude cos ofyour age. I'm 74 and was diagnosed with AFib over 10 yrs ago. What I still find hard is when you lead a healthy life, exercise don't, smoke etc you get something like this. All the guff you see about altering your lifestyle, lose weight, exercise more etc I thought well how does that apply when I already do it. So, as far as I know there is no permanent cure, but ablations and cardioversions can help a lot. My cardioversions (3) have kept me free of AFib for over a year at a time, otherwise its medication and if you use this site regularly you will see different medications discussed regularly. Good luck with the financial Ombudsman, I have used them and it took a while but they were very helpful and sided with me. When I won I was asked what outcome I wanted and asking the company to change its policy was something they couldn't/wouldn't do. It seems they only wanted a monetary figure to ask for as compensation.
Hi, thank you for the solidarity 😊 I didn’t think that looking for peers support was this controversial.
Bupa already recognised they were in the wrong but they keep delaying taking on the cover for the cardioversion. Now the Obundsman is treating it a matter of urgency, hopefully they’ll obtain something. That really didn’t help with my levels of stress…
You are young to have a diagnosis of AF. But it just means you have an irregular heart beat. If your BP and Heart Rate Rate are in normal range and any symptoms do not cause you to be anxious forget it.
Do you have a heart murmur?
A friend recently had an ablation 20 years on and now had lots of pills. He was discovered having 2 AFs going in two places at the same time. He is now cured.
best of luck to you Erica,but just one question,you are not taking blood thinners?anybody in permanent a.fib needs to take them (unless you convert to sinus one day),risk of stroke warrants anticoagulants regardless of age and cardiac status
Hi, no I don’t take them and not everyone does. Because I’m very young (for afib) and very healthy I don’t need to take blood thinners. I will have to take them before and after the cardioversion for some time. You can read about this here acc.org/latest-in-cardiolog...
My blood was tested by GP and hospital, they all agreed I shouldn’t take anticoagulant. Same was agreed by cardiologist. Also for young people the risk associated with taking these meds is different and the long term effect should be considered more carefully.
The afib itself is not making your blood to coagulate but comorbidities do, such as diabetes, high cholesterol, ... Other risk considered in the CHA2DS2VASC is the age, I think I remember everyone over 65 has to take the anticoagulant. There are many source online about the CHA2DS2VASC score, and you can read all about it. The score is used to decide the anticoagulant therapy case by case.
Reading I learned so much, like that unfortunately diabetes is a much higher risk for stroke than afib.
I am sorry but it is not exactly as you say. The blood clots in a fib form in left atrium because of irregular heartbeat as the blood stagnates and pool in left atrial chamber and can be then carried to brain.That is also a reason you take blood thinners before cardioversion,because sudden change to sinus rhythm can throw the clot to systemic circulation.The same can happen should you convert spontaneously which ,since you are healthy and young,can happen.I would definitely take blood thinners now till cardio version,and after that,if in sinus,yes,stop them.The USA guidelines are little different than UK,more aggressive.
Of course everyone should take individual advice, but if her CHADS2 Vasc score is 1 (the 1 being a point for being female), then quite possibly not. NICE Guidelines state:
“Do not offer stroke prevention therapy with anticoagulation to people aged under 65 years with AF and no risk factors other than their sex (that is, very low risk of stroke equating to a CHA2DS2VASc score of 0 for men or 1 for women).”
Yes but I was told your get 1 point for Afib so that means as a woman you automatically have a s ore of two with Afib. There is talk of dropping the point all together for being female. I hope they do.
No the scale is for people with AFib so presumes you already have it. So if you’re a female with no other risk factors you score 1.
Yes you’re right there is talk of readjusting as it’s been shown that, in lone AF, it’s more of a moderator than risk factor & that therefore the 1 point is excessive. Here’s the relevant article.
you get a point for being female. But you don't get a point for being male.
What I'm trying to say that being female you get a point just for that. So you are a point ahead of being male. This does imply that being female puts you at higher risk if you have other cofactors because you automatically end up with a higher score.
Correct. Females are a point ahead. And a female’s risk is statistically higher when all other scoring comorbidities are the same. The debate is whether young women with lone AF should continue to score 1 just by dint of sex. The research I attached would suggest both males and females should score 0 with lone AFib, with an added weight for females only coming into play further up the scale.
Not true Jerryczech. I have been in permanent AF for going on 30 years and have never been told to take blood thinners and have never taken them, that's after consulting with many different cardiologists over that timespan. Some people just don't need them especially younger folk. There is a test that is used and some people with Afib do come out of it with a score of 0 meaning thinners are not needed. My GP found it baffling as well once they carried out the test on me but after a chat with my cardiologist they finally got their head round it. Once I get to 60 I have been told the status will change and I will have to take them.
Imagine the state of me now if at 24 I had been told I needed to take blood thinners for the next 30 years. I do thank my cardiologists and the test they use for that judgement.
This is what I mean when I say age is key in treatment and evaluation. This is true for most of conditions. Thankfully I don’t have any comorbidities so far and I hope I will follow on your same path Mimak.
well, I guess we are more aggressive here in US,sure you can live with a fib for decades and be ok but whatever age you are your risk of getting stroke is always higher because of incomplete emptying of left atrium due to fibrillation.So you start blood thinners when?55?60?45? There is no magic time and even if lot of young people with a fib can go healthy long time there are quite a few who suffer debilitating stroke,I am the physician and I was treating them.
And one more thing,a fib is never labeled permanent on this side of the ocean unless you exhausted all available treatments,meds,cardioversions,ablations,minimaze,av node ablation and pacer.You never know what is coming in later years,using more aggressive therapy to get”cure” would be my choice,not much to lose
All you can really do is go by what you're advised from a health professional or don't do that if you feel you know better. I had a long discussion with a great cardiologist all those years ago who pointed out the pros and cons and ultimately I decided the choice was better, for me, to steer clear of everything at that time (I did initially try a cardio version) and just get on with my life. I may well have suffered a stroke and if the chances were high of that happening I would have probably taken a different road but taking into account blood pressure readings, general health, my personal wellbeing and quality of life and other factors it was seen as potentially more hazardous to take thinners. Look at aspirin, I remember a doctor prescribing me half an aspirin a day. Now its common knowledge it can lead to bleeding on the brain and stomach and potential kidney failure!
You could take thinners early in life and maybe end up with whole heap of other issues down the line from taking these over an extended time, but then again maybe not. Have an ablation, cure the problem for a while but then it returns and its back again and have another one and another one but its still there only now you have a badly scarred heart and maybe other heart issues besides all the stress and worry you have had. Alternatively it may have cured you first time. Its so hard to say what is correct as each person will be a different matter but from the standpoint of young people with a life of this ahead of them, I would always lean away from any procedure or medication unless it can either nip it in the bud or improve their quality of life.
That’s exactly what my cardiologist said, if there are no symptoms and my general quality of life is good, it is better to leave it be. I’m glad I had found at least one person with persistent, young and no other complications, at least I have one other to compare. All other cases don’t apply to me really because of age, persistent and no comorbidies/symptoms. It is a very rare place to be but maybe not so bad after all.
Also my heart pumping function is 100% so there is no stagnation of blood in my heart. Except the rhythm being stupid at all times, my heart is perfectly normal. This is what echo and cardiologist said.
Enrica, I would say that it shouldn't be dismissed completely though as your body is constantly changing and the information surrounding Afib is also contanstly being revised and updated. You should also get regular check ups (every couple of years at the least) to make sure everything remains ok. Also like I mentioned previously there are newer procedures out there like the mini maze that are now being done in the UK on the NHS (See MummyLuv posts) but there its not risk free. Ultimately its your choice along with the health professionals how you move forward with this but stay sensible, don't let your heart rule your head (no pun intended!), don't let it consume, obsess and overly stress you, stay open and be ready to act should you need to and most of all just try and get on with living as full and engaging a life as you possibly can, I have seen waaay too many people lead poor quality lives due to missing the forest for the trees!
I just wanna say it one more time,Enrica,your heart pumping means that your ventricles,namely the left one is expelling 100% of blood to your body.It has NOTHING to do with your left atrium that is not pumping in regular manner but rather chaotically in a haphazard fashion which leads to slow enlargement of this small chamber and pooling of the blood leading to formation of clots.So you can win New York marathon one day with 100% heart just to get stroke next day since your atrium is not 100% and it never is in a fib.
I understand I am biased having seen the consequences of wrong decisions,but I do agree these decisions are very hard and I despite all my knowledge struggle with answers for myself and my family.Wish you all there best of luck,this disease leaves always more questions than answers
I feel like I know exactly how you feel. I was diagnosed in 2021 at 37 with PAF. I too have no lifestyle modifications and was extremely active with no other health concerns. I just randomly started having a racing heart rate which they initially thought was SVT but after a holter discovered it was fib and flutter. I just had my second ablation last week. Unfortunately I end up with wicked headaches after ablation. I am hopeful that this one will have been more successful so I can carry on back to my regular activities and chasing my 2 kids around.
Hi Enrica, You are out of the average age grouping for this but it seems to be growing. My electrophysiologist has told me that he is seeing the numbers climb since the "covid V" had rolled out. If you participated in that than possibly your cause? But there are many other factors that can be the instigating culprit, such as mine. A bad habit that I gave up many years ago. So you are in active Afib, that is why your doctor wants to do a cardioversion? Be encouraged! You are young and youth is on your side as well, eat right and exercise, be thankful and be a smile to others. I truly believe this helps. not implying that you do not do these things already Anyway, God bless!
Thank you for the encouragement. I don't think the "why" can be identified in my case, I'm more trying to understand what to expect considering that there is very little experience and literature on cases like mine. Yes, the cardioversion may bring back normal beats but cardiologist clarified it may not work as we don't know for how long I've been in afib and it might be permanent.
I hope I’m not too late to post. Welcome to the forum. I’m sorry you are going through this. I had my first ‘episode’ at 40 but was never diagnosed and I could never get it ‘caught’ on an ecg. I know exactly what you mean about being better off not knowing, as my episodes were very infrequent and I went on with my life, thinking I had the odd bout of ‘palpitations’. I was eventually diagnosed at 55 and then my life changed, once I knew.
As you are due a cardioversion, has ablation also been mentioned to you?
thank you for sharing. Ablation was mentioned but cardiologist said that if cardioversion doesn’t work then there is no hope for ablation, as I would be in permanent… it is something it can be considered only if I’m “reversible”.
Having paroxysmal Afib diagnosed at age 40 myself, my experience is you’ve already successfully negotiated your biggest hurdle for young Afib, that of getting diagnosed. Once you are in the care of a good EP, the rest is just about learning from those before us on what works, what doesn’t, and finding a community of people that can understand the sometimes silent struggle of a wonky heart.
This forum is wonderful. I’ve never posted but I’ve learned so much reading over the years here. Lovely, supportive people with a range of experiences they are willing to share. Reddit Afib forum is another supportive one but with fewer users.
One other suggestion for “young Afib” is to investigate for sleep apnea and gut issues. Then all there is to do is maintain a clean lifestyle and keep in touch with your EP. Good luck to you!
welcome to the group enrica, you will learn loads here. It’s great to share. I was 50 when diagnosed with persistent afib, older than you but I did get a shock as I’d been to the GP at 46 with symptoms and was told I was exhausted….
As afib is progressive I looked for an alternative treatment as I had one failed catheter ablation and had a mini maze in May last year . So far so good, in NSR.
Good luck in your journey whatever choices you make, how we manage our afib is very individual
cardioversions did not work for me, even after catheter ablation. I live in Scotland so had to pay privately but if you are in England you can have it done on NHS.
what do you mean by “progressive”? I understand that if it is already persistent they don’t know the further development. I struggle to find anything that says what happens long term. My cardiologist suggested to do nothing if I don’t have symptoms, he also said that if I develop symptoms after years, there is nothing to do when permanent.
you have to agree that it is permanent, this means you and your medical professional have agreed to no further treatment: You may be lucky and you go through life with afib and a low heart rate and remain with no symptoms. You may find that you do start to display symptoms as you age and you may wish to have treatment at that point (medicine, ablations, mini maze), the longer you are in persistent the success rate of the second two treatments falls.
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I have no symptoms and I carried on as usual but with massive anxiety. Sometimes I wish I just never had found out about it. 
In afib day after ablation 
Experience with no medication!
Afib and pauses in pulse
Back in afib
