AF Diagnosis

[Bushlover]

I have just been diagnosed with AF and am struggling to come to terms with the diagnosis and drugs I've been prescribed. Any advice, encouragement or information would be greatly appreciated. I've always been fit, healthy and very active. Now I'm fearful of doing too much and bringing on AF.

[BobD Volunteer]

Unless you are an endurance athlete or fighter pilot (both groups tend to cause themselves AF) you have probably done nothing wrong.

Yes it is scary when first diaagnosed but many people live long and productive lives with AF.

It can be a long journey I'm afraid and finding the right drugs or treatment can often take some time but we have all been there and survived just as you will.

Why not go to our (Atrial Fibrillation Association) main website, read till you drop and then ask us any questions .

[Bushlover in reply to BobD]

Thank you. I think I need reassurance more than anything right now. Appreciate your positive words.

[Sixtyslidogirl in reply to BobD]

I think it would be great if athletes were not singled out as having caused their own AF, as opposed to many other people who may have also caused their own AF through poor lifestyle choices. The NHS website has this to say

The cause is not fully understood, but it tends to affect certain groups of people, such as older people and people living with long-term (chronic) conditions such as heart disease, high blood pressure or obesity.

It may be triggered by certain situations, such as drinking too much alcohol or smoking.

As an athlete with AF, I do understand that my training regime may have caused it, but when I introduced myself on this forum there was definitely some blame sent my way, which I don’t see for other new members. There is very little to no information for athletes about AF so most of us think we are doing a good thing when we are running. Which can’t be said for those eating cream cakes.

Just wanted to get that off my chest. Sorry Bushlover .

The best thing I did was try to understand as much as possible about AF and adjust accordingly. I think giving up alcohol and magnesium tablets have made the biggest difference to me, along with Zoe nutrition and obviously adjusting my exercise regime. I have had episodes in Feb 2020, Sept 2022, and four this year. No medication apart from pill in pocket (flecanide, bisoprolol, apixaban) and hoping for an ablation within the next 4 months.

[Chinkoflight in reply to Sixtyslidogirl]

Hi Sixtyslidogirl, victim blaming is never a good look, I'm really sorry that you have been made to feel culpable!I had a stroke at 70, and the most athletic description a n other would have said was 'short overweight (fat) bald bearded bloke - no wonder!'

But in truth apart from factually being overweight, I was quite fit, mainly from cycling and walking regularly. At that time, having been asthmatic for my early life, I couldnt run to catch a bus. But in the absence of a community stroke recovery offer post pandemic, I asked my GP about Couch to 5k. I was reluctant as was wifey to go off cycling because of the increased likelihood of a second stroke. Didn't want to fall off out in the sticks into a ditch somewhere! So trying to run showed willing to do something.

Couch to 5k is a brilliantly simple resource and I found it overwhelmingly amazing to run for a minute, occasionally had to abandon at 45 seconds, but by the end of the 9 weeks I did run (fast amble) for 30 minutes non stop. What a feeling.

Today I was trying out effort improvement by using a runners world review of using hills to improve speed and running style.

Still can't do my Parkrun, 5k, in less than 36 minutes but that is an improvement from my first event time 39 runs ago of over 45 minutes.

I have an implanted ECG device to monitor my Afib. I've done a couple of fun 10 k events and I just wish I had tried to run earlier.

And why do I think I made the best possible recovery from the stroke, apart from receiving the best and most timely health emergency treatment and ongoing meds etc. Well because if my base fitness level from cycling, and now my even better cardiovascular and skeletal systems since running.

I know it's just not a possibility for some because of co-morbidity issues, but if you can, just do more exercise and maybe think about C25K.

And one day if we bump into each other running although I'm sure you'll be ahead of me, I'll be following with a smile on my face, after all it's a run not a race!

Thanks for prompting me to write this in support of you. What might the outcome have been if you weren't fit!?

I hope you read this too Bushlover.

[Sixtyslidogirl in reply to Chinkoflight]

Thank you! It cheered me up reading this!

[BobD Volunteer in reply to Sixtyslidogirl]

Sorry we are not in the blame game BUT the facts are that endurance athletes and fast jet pilots have a far great likelyhood of getting AF than the general population. We know the reasons of course. Enlargement of the left atrium due to the amount of work for which the heart is called upon. I understand that in the former group, professional athletes who retire and de-train seldom present in this way whereas the amateurs who continue into their fifties and older are the ones who suffer,

Of course there is a third group in binge drinking teanagers but they usually grow up and the AF passes. Yes there is no doubt that obesity plays a role here and there is ample evidence that a good BMI can either reduce or in some cases stop AF. That said we have plenty of "racing snakes" in our membership who have AF where lifestyle choices as you put it can't apply.

[AAJJTt]

Hi, its perfectly natural to feel nervous or anxious, a diagnosis like this can be daunting.

It took me a while too to get my head around it and work out what my life would or could be in the future and basically be a bit more relaxed.

I was a healthy and active person until I had a heart attack (nstemi type2) root cause - undiagnosed and untreated atrial fibrillation. Angiogram with no interventions, discharged with medication and exercise.

This is now nearly 5 years ago, my arrhythmia is controlled by some low dose anti medication (Flecainide) and I have now been ‘Afib free’ for 3+ years. Post heart attack, I was left with slight left ventricle dysfunction as well but this has gone and my heart is ‘structurally normal’ again. I honestly feel that I don’t have any limitations at the moment - I regularly run, climb, cycle and travel.

I’m not saying it was all easy though and as BobD said it’s a ‘long journey’ and a different one for us all. However working with your medical team you should be able to find a treatment plan for you.

Engaging on this site/forum as well, will give you access to a wealth of information and support.

[Bushlover in reply to AAJJTt]

Thank you!

[Autumn_Leaves]

Unfortunately it’s very late in the UK and I can’t give you the response you deserve, but be assured you have done nothing “wrong”. AF can be scary, both the diagnosis itself ans when you are in an episode, and it may take time to get your head around this unfamiliar “new normal”.

Medication is sometimes necessary to control AF and to some extent prevent episodes from happening. It’s important to work with your healthcare provider to find the best way to manage your AF, it’s very much an individual situation as we all have a different “AF burden” and different risk factors. In time, most people effectively self manage with whatever medications and strategies they have available to them.

You will hear a lot about lifestyle and this is highly individual to you. There are many different healthy diets, people have various levels of exercise tolerance, there are various ways to manage stress, but I think we’d all agree on adequate sleep being important. I think we’d also all agree that looking after our general health is important too, whatever works for you. If you’re already taking good care of yourself, you don’t need to upend your lifestyle.

[Bushlover in reply to Autumn_Leaves]

Thank you!

[KiwiBlake]

Hi Bushlover. I was diagnosed with AF at the age of 48 (about 4 years ago), fit and healthy. One thing I found really useful to do was keep a diary of anything in the days or hours leading up to an episode. I noted down things like what I ate, what I drank and how much in terms of alcohol or coffee. Excercise, did I have a stressful day at work, stress at home (at the time of first being diagnosed we had all 4 daughters living at home as teenagers!). Ask around the family, do you have any parents, grandparents etc with a history of AF. If you can start pin pointing any thing that can bring on an episode, you can then try and mitigate it and perhaps lesson the impact of the AF episode or avoid it completely. The best bit of advice I can give you is try not to worry about it too much (that might sound like hard advice to take, but anxiety is well known to make AF worse).

There are lots of really helpful people on this forum with a wealth of knowledge and experience, who are happy to lend support and advice.

Best wishes,

Blake (in New Zealand)

[Bushlover in reply to KiwiBlake]

Thanks, Blake. That was really encouraging and helpful advice. I'm fairly certain mine is linked to my back as whenit is giving me trouble that's when I get AF. My doctor is harder to convince, but I have a lovely osteo so hoping he will get the back sorted and then I'll know more.

[Blearyeyed in reply to Bushlover]

You are probably right , long term pain is another type of negative physical stress and coping with chronic health issues of all types can be one of the factors that trigger your AF to develop.My AF eventually began because if the added Stress on my body from other health conditions.

Do feel reassured though.

You will get a system of Self Care and medical help together that suits you and your needs to be able to improve the AF and let you continue with the quality of life you enjoy.

In some ways , as you learn to pace your day and get a greater balance between activity and relaxation , you actually learn a lesson for Living that even the healthiest people we all know could benefit from learning too.

As you've been advised , keep a diary , not just of AF symptoms but things like Back symptoms , Fatigue , other pain , as well as a food diary and you can begin to see a pattern there are things you should either avoid or alter to help prevent AF events happening, it will help the back problem too.

Take care , and keep posting with any questions you might have or just if you want to get things off your chest and there will be lots of people hear whom will understand and answer , Bee

[BenHall1 in reply to KiwiBlake]

Hi,

I totally agree with the genetic bit. Absolutely, I've done this trace in my family, it showed up in my Dad's side. My paternal grandfather died in 1964 ( aged 82 ) from a series of strokes but there is nobody alive today who can recall the exact medical diagnosis causing the strokes. I have AF, my daughter was diagnosed with AF during both her pregnancies ( early 30's ) and now she has stopped breeding there is no AF, she practices Thai Kick Boxing these days. My 2nd cousin has AF ( his father was my grandfathers brother ). If one looks at genetics need to remember that a condition isn't always linear, that is, following each generation as it comes. It can miss and mix generations.

[Flutterby100 in reply to BenHall1]

This is good know BenHall1. My son aged 21 is currently going through the mill of tests etc. He started wearing a garmin watch for his running and his HR was always ok until we hit a bit of an incline (and im talking tiny inclines not hills) and it would spike up to 190/200 then take ages to come back down. An ECG at the GP highlighted an arrhythmia so was referred to a cardiologist who has now requested a 24hr holter monitor. Hes never had any symptoms and nor does he feel it when his HR spikes. Although my mum had stents fit in her late 50s and my dad died suddenly of ruptured aortic aneurysm aged 79, we are not aware of any other family members apart from me and my son having arrhythmias

[Sarah57 in reply to KiwiBlake]

I had my first AF attack at 37 and my GP had not even heard of it in 1995!

I had two young children at the time and it was the day before Christmas Eve.

I was a teacher at the time.

My mother had AF and a family history possibly running through our New Zealand side of the family.

I am one of 4 siblings and they are older than me but all now have AF, all be it in slightly different versions. It appears to be a "bespoke" condition!

We have all never smoked or been heavy drinkers and have played team sports and exercised through out our lives so I would say you have certainly done nothing wrong!

I hope you have a successful ablation as I was lucky enough to have 7 years ago.

with best wishes

[Lenlec]

you’ll be fine. Listen to your cardiologist and ep.

If offered ablation have a serious think about taking the procedure. Stay fit & healthy the main thing. Good luck

[secondtry]

Probably the best advice I can give is be determined to use it as a tool to INCREASE your life expectancy and avoid other chronic conditions many contract in later life by making lifestyle changes earlier than you would have otherwise done.

You will find frequent discussions here how lifestyle changes eg stress reduction, moderating exercise, diet & breathing changes & many more can help combat AF; most of these are unlikely to be raised by your cardiologist/EP who will add the drugs/an ablation as necessary.

[JOY2THEWORLD49]

Hi

What diagnosis have you. In 2019 after a stroke My Diagnosis was

Rapid and Persistent AF.

But now I am controlled in both H/R and BP on

Diltiazem 120mg AM for H/R now 60s Day Night always low at 47average.

Bisoprolol 2.5mg PM for BP.

Of course on PRADAXA 110mg x twice.

Plus my 125mg Synthroid due to the Ca Thyroid they found within 4 days of hospitalisation. Removed 4 months post stroke Feb 2020.

So I keep my TSH @ between 2 - 3.

BP 110-130mg / 69. 60s H/R Day.

With a dilated L.V and RV regurgitating I can't habe cardioversion, ablation or anti arrhymic drugs.

Dr says that 5 years on Bisoprolol the dilation should disappear. Hopefully.

cheri Joy 74 (NZ)

What meds are you on? What is your numbers?

[Nezzera]

I can’t add anything more to what you have been told here already.

I can tell you to stay tuned to this site and I believe it will be an invaluable resource of information and personal experience. It has been for me.

Take care

[theenglishman1]

i like you enjoy exercise, after AF I broke my ankle then we had covid, my ankle took forever to heal, but it did it was then that i started walking, i purchased a bike for my home, between the walking and the bike my fitness level is ok, I am 76 and make myself stay active, I encourage you to not let AF stop you.

[Omniscient1]

Lots of good advice here, which I'll not repeat, but as you get more 'into it' come back here and ask more questions. I will add is that yes it's a heart condition but you're not going to die from it. The second thing I'll add is that there are loads (and loads .. ) of people that have it. Many who don't realise.Look at your chads2vasc score (Google it) and take note of whether you'll need anticoagulation.

Best, Gary

[Gumbie_Cat]

You definitely shouldn’t blame yourself at all. All the advice on here is great, and keeping up a healthy and active lifestyle is important. I would say to keep an eye on how any episodes relate to what you are doing. It could mean pacing yourself a little so that you’re not pushing yourself to the limit with exercise.

I am certain that mine is mainly caused by my genetics - and I can’t do much about that. I have a history of AF and strokes on both sides of the family. However, I can take the recommended meds, watch my diet and other risk factors, and keep up being reasonably active. (That’s really just walking for me as I’m the opposite of sporty - but for athletic types just avoid pushing to the extreme.)

Then read all you can on the treatments available, so that you can make an informed choice. Good luck!

[Fullofheart]

I was late 20s when I developed AF. It was a bit of a shock as I was pretty healthy and hadn't been doing anything that could be seen as a major risk factor for bringing it on. I later learned about family history of af and cardiomyopathy. Fast forward 20 years. I didn't really have significant issues until 3 years ago...could be menopause, could have been virus related (had covid early on) could be stress (lots going on) could have been a developing thyroid problem... that made matters worse but equally just the duration of AF without appropriate treatment could have been the culprit.It's been an intense couple of years as I was referred to cardiologist who was prepared to take more "aggressive" approaches to treatment despite the odds not being in my favour. I had been in persistent AF for over a decade, diagnosed borderline heart failure, dilated atrium etc. But they (he and EP) gave ablation a go and a year after 3rd attempt I am now, at least temporarily, AF free. Definitely grateful for their persistence and my own ability to stick with it even though there were times of doubt.

It's pretty amazing what they can do. Hope that helps a little...not that you are in this situation but to know what can be possible against the odds.

For you, there will be loads more options and having treatment early on will prevent a lot of the potential complications.

FYI in the last 20 years AF didn't stop me living my life...a busy career, achieving academic goals, travelling, having fun, exercising etc. It's all possible with a bit of care and common sense. 🌸

[babs1234]

I felt exactly the same when diagnosed. I gave come to terms with it and I’m still very active

[Hennerton]

Do you happen to know what your thyroid levels were when you were diagnosed with AF? Did the hospital do a blood test to check them? I ask because I had a period of AF and it was discovered that my levels were too high. I had been in hospital for an appendix abscess and had lost lots of weight, so that my normal dose of thyroxine and liothyronine should have been reduced. It would be good to get all levels checked immediately and make sure you are not over the reference ranges in T4 and T3.

[Hennerton in reply to Hennerton]

I have just seen that you came via the AF link, not thyroid, so you may want to ignore my reply unless you are on thyroid medication.

[Buzby62]

Plenty of reassurance here already, knowledge is the key to managing the anxiety of being newly diagnosed.

Here’s a link to the Resources BobD mentions, I would scroll passed the videos to the Reading Resources below and start with the Patient Information Booklet if I was you.

heartrhythmalliance.org/afa...

Hope this helps

Direct link to the booklet :- api.heartrhythmalliance.org...

[Bushlover in reply to Buzby62]

Thank you.

[Flutterby100]

Hi Bushlover, I was diagnosed with PAF Oct 22 after blacking out playing football. I was prescribed anticoagulant Rivaroxaban and that was it. I had an ablation in Jan 23 and it was a steady few months thereafter but I've pretty much been back up to full speed and symptom free the last 6 months back doing all my regular activities- swimming, hill walking and the gym. The only thing I havent gone back to is football (more a psychological barrier than a physical one) but plan to start again in the new year. The biggest thing I've learned in the last 12 months and being a member of this forum (which has helped immeasurably), is that we're all wired differently and mostly have very different experiences but I find thats possibly helped more than if we all had the same experiences. Listen to and trust in the clinical professionals and come here to learn, share and support would be my only advice. Good luck and best wishes

[Kent2007]

Hi Bushlover. Sorry to hear about your diagnosis (which I assume is paroxysmal, given that you are concerned about 'bringing it on'). I think I felt somewhat similar 16 years ago when I was diagnosed. As to its cause, I was told it was ideopathic - no identifiable cause). I have always attributed it to my very active lifestyle - squash player, runner, rock climber, mountaineer etc.. My suspicion was reinforced by a comment made in a TV programme hosted by Dr Michael Mosely (in "Trust me, I'm a doctor"). He used to bring experts in to discuss health issues and one of these was "Can a person overtrain, i.e. have too much exercise?" The expert replied yes and said the end result was arthritic joints and AF. Both my hips have been re-surfaced, and I have PAF. However, I don't regret what I did, I just try to work out how I can carry on. Now aged 68, I am still very active but not as active as I once was - mainly I think due to age-related decline. I stopped squash and running because of my hips but still climb, albeit at a lower standard - age-related. I don't climb big mountains now (climbing at altitude is very demanding) and I tend to avoid super long days out in the hills - both a concession to PAF.

So, I think you are about to embark on a bit of a voyage of discovery - what can you do and what is best not to do. Finding triggers to AF is very hard - sometimes a trigger is obvious (I remember distinctly a surge of adrenalin when, on a rock climb, my last piece of protection fell out, leaving me exposed to a likely fatal fall. AF started immediately!). More usually, it isn't. I keep a record of all my incidents and try to draw conclusions from that. Now, if I have a long day of endurance style activity, I avoid coffee, alcohol and heavy fat/carbon laden meals.

One final point - you will be seen by lots of medics. I think it is important for you to find an electrophysiologist (not a plain old cardiologist) who you can feel confident in. I on;y discovered that EPs exist through this forum and have yet to see one (fortunately, my AF occurs very infequently and I have not felt the need for any further consultations).

Good luck

[Barbara72]

I have permanent af, which means obviously that it is constantly present. Years ago, when it was first diagnosed, my go said, “If you are going to have a heart complaint it’s the best one to have since it’s the least serious”.

In my case, as happens if not diagnosed in time, it lead eventually to heart failure, but with the right medication I lead a perfectly normal, very active life, walking a lot and keeping one year old twin grandsons and a four year old granddaughter every weekend.

I’m 75 and was diagnosed ten years ago although I recognise now that I had af since my 20s without realising.

You’ll be fine.

[Ppiman]

Hi there and welcome. The first idea to scotch is that you’re life is in danger. AF can make you feel like the end is nigh; but it isn’t. Thankfully, the top of the heart works nearly independently of the bottom and matters far less to your health and longevity. It’s a kind of holding chamber for blood that the ventricles down below suck down as needed. When in AF the ventricles do play up somewhat by beating erratically and, sometimes, too quickly. This is what can bring on symptoms - but not in all sufferers.

The key is the symptoms and whether they are debilitating or whether you can cope with them. Treatments are aimed mainly at the ventricles to keep their rate normal, attempted usually with a beta-blocker called bisoprolol. If symptoms are too much to bear, then electrical cardioversion is sometimes tried, or anti-arrhythmic drugs, such as flecainide. These are potentially more toxic but usually fine. Finally, there is a procedure called an ablation.

But you likely knew all that!

Steve

[FSsimmer]

Hi, Bushlover

now, what you have is very common, and its more common the older you get!!...Afib is not a dangerous rhythm as such you will not die from it. It can be managed and treated and people with it can lead long and active lives...Don't think about what caused it you may never find out. I was a long distance runner, and its common in us!!!

Be pleased its treated, as many people are walking about and have no idea they have it, it does not always cause symptoms, like with me.

Medication is important as the complications from untreated Afib are problematic. That said if you see a cardiac specialist they will instigate the correct treatment to suit you.

You may see a cardiologist, but ask to be seen by a Cardiac Electrophysiologist. They are specialists in the hearts electrical system and experts in the treatment of Afib...They see a lot of it, so don't worry. ..Its a shock at first but I have had Afib for 3 years ( almost permanently ) and it does not stop me doing anything!!...There are a number of treatment approaches and the best one for you will be decided. You are not an invalid and you can and will carry on and cope with this...All the very best to you. Feel free to ask me anything and if I can help I will

[Exfat]

I lived an active life before being diagnosed with AF and continue to live an active life with it. People have mentioned triggers I found that even though I’ve identified some triggers AF will continue to do what it wants. No matter what you do. even though I’m living the healthiest lifestyle I’ve ever had. it’s a matter of relearning your responses are used to just push on through and do everything even though exhausted now I’ve learnt it’s time to rest and I rest

[Pindarus]

It comes as a great shock when first diagnosed especially if you have not experienced any heart problems before. The best advice I have seen is to try to consult an electrophysiologist rather than a standard cardiologist as the first deals with the electrics rather than the plumbing. If there is a long waiting list, see if you can afford a private consultation , normally about £200. Particularly discuss the benefits of cardioversion and ablation. Everybody has differing symptoms and reactions to medication and it may be necessary to chop and change to find what suits you best. Many people live an almost normal life and most live with it for donkeys years.

[Heart1604]

Good morning I too was diagnosed with AF in May of this year shocked me they took every test you can think of of my heart stress test nuclear test you name it and my heart results came back perfect they said I have a very strong heart so I don’t understand how I can have AF if somebody can explain that to me lol lol AnyWho prayers sent your way. I was told to give up a lot of stuff but then I was told I really didn’t have to and just keep going by how I feel. So that’s what I’m doing. I don’t like taking medication’s especially the blood thinner so I try to go a more natural way, while still taking half of that I’m not really a pill taker so that parts really hard for me. I was told to stay away from certain greens and my wine that I love having but then told no I could have my wine Just not a whole bottle lol lol AnyWho send good vibes your way we all adjust I guess. Take care.♥️💙♥️

[Rm61012180]

Since Feb life turned upside down...also have leaky valve...waiting for possible surgery...out of breath a lot...coping as best I can...Happy Thanksgiving!

[Quilter43]

Things happen...age..genetics etc..who knows why...don't blame yourself...Read up on it..every case is different...after meds.ablation..I ended up with pacemaker..still take meds.walks.exercise..try to eat right...it is a journey..drs..treatments etc.u will find your way..