Hello. Diagnosed with AF in February. Interested to hear how people are managing with this condition.
relatively newly diagnosed AF and sti... - Atrial Fibrillati...
relatively newly diagnosed AF and still trying to get my head round it.
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Tues
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BobDVolunteer
Best advice is go to our main website (Atrial Frbrillation Association ) and read till you drop as knowledge is power.
In general terms AF is very unlikely to kill you but can be a real pain in the ****. A good mantra is" AF may be in my life but it is not all of my life." Too many people let it! My AF journey started at least thirty years ago and I'm still here kicking **** but just not as hard as I used to.
Ask any specific question and the helpful members here will do their best.
I have always wondered whether anyone really does "let" their illness - AF or whatever - rule their lives, rather than, like some latter day St George, they need to find the strength to defeat it?
Maybe the effects of their particular illness is different, perhaps more pronounced and prolonged? My father was proud of never seeing his doctor, and it made my poor mum, struggling with arthritis daily, often feel belittled. And yet, you make a good point and I wonder where the truth lies? Maybe somewhere in between? I suppose some might be lucky to have been born with a stronger constitution in some yet-to-be discovered way - or brought up differently, perhaps? I have never subscribed to the strong and weak metaphors , however - but maybe I am wrong.
My now 90-year-old elderly friend with permanent AF has always said of himself, "I don't let myself get down", for example. Much like my dad might have said, I suppose, whereas the man's poor late wife struggled with staying "up" during her latter years of physical decline. I used to tell him off roundly for saying such a thing as it clearly belittled rather than helped her. She was a lovely woman who faced an uphill task who, I would say, never once "let herself" feel as she did.
My own experience of arrhythmias, recently now becoming daily rather than infrequent is that they can be very hard going at times - very hard indeed. Frightening to the core, in fact, at times. And yet, in between those times, we all do get on with our lives as best we can, I expect. I do, anyway, and two friends I have with AF are similar. All of us, I should think do this as best they can, not just the "strong" ones. For example, I fitted that old friend's small hallway out the other day with carpet tiles after it was ruined by flood damage a while back. I can't tell you what my heart felt like at times during the job, but I am here to tell the tale.
Steve
I think it’s normal for some to deal with it better than others and some not deal with it as good? I was diagnosed 10 years ago and still to this day i think and worry/wonder what my future holds regarding my AFIB unfortunately.!! It’s in my mind every day, and it’s definitely affected my mental state for sure. Iv had counselling etc over the years yet still struggle more mentally than physically with AFIB. On the other hand my friend was diagnosed with AFIB had two ablations but still gets episodes a lot more than I do and it just doesn’t bother him at all.!!!! Iv asked him if he worries about it and he just says ohhh no, It is what it is!!
We are all most definitely different.
all the best
Ron.
Ron - you've spoken my mind and much of my daily life in those few words. I, too, have such a friend and he also just gets on with things. Yes, a part my every day is spent in worries, and it can be a lonely thing at times. But, life does and always will go on, with or without those fears and worries, or indeed without us in it.
Steve
If the truth be known Steve we are probably going be fine looking at the statistics and what my own EP and many cardiologists have repeatedly told me, but I think the problem is with probably with us.? I know it’s definitely with me anyway.! I just cannot stop thinking and worrying about the future with AFIB. I know I’m wasting my life thinking this way and I know it can’t be healthy to always have it on my mind but I know I will NEVER be any different unfortunately. if a doctor told to me sell your house and car and everything you have and pay me it all then I will give you the IT IS WHAT IT IS ATTITUDE I would honestly do it tomorrow.!! I’d have nothing but I’d have gained daily mental peace which to me is worth far more than anything Steve.👍
Ron.
I do know that feeling. It sounds like you have it worse than me, and, for that, I can fully sympathise. It's the same with sleep. I would give anything for the pleasure of knowing I could just "go to sleep" and, stay asleep like normal people!
Steve
I must admit alot of days are manageable but some days are bad.!! Especially when I’m at work trying to concentrate..!!! It’s very draining when your head is constantly over thinking even subconsciously.!! It’s an intricate thing is the brain.
You're a hero to work with it. I just couldn't manage my old teaching job.
Steve
It’s very challenging sometimes believe me.!! But I try to give it the IT IS WHAT IT IS ATTITUDE until I get home then usually go straight to bed because it’s drained me.🤪👍
I think that's the very best I could do, too! But to keep it up each day. Phew! I'll say it again: hero 
Well get there mate eventually.👍
Do what I've just done. Pour a nice drink. For me it was a G&T even though the weather isn't right for it. My, what a torrential storm we had this afternoon with the loudest crack of lightning and thunder I have heard in a good while.
Steve
BobDVolunteer
If you look at Pinned Posts on the right of the screen, the second one down will direct you to our resources.
Hi, the trouble with AF is that it’s individual. Some people have such extreme episodes they need a DCCV nearly every time, others don’t notice they have it and get a surprise when diagnosed, and there is everything in between. There are also two basic responses - ‘What a nuisance!’ and ‘The sky’s falling in!’ but they don’t necessarily match the degree of severity. Reading other people’s posts as well as the scientific information helps to establish an appropriate emotional response though no one says it is easy. My most important advice is that stress and anxiety are very bad for AF so finding a calming technique that works for you is as important as being aware of diet restrictions, hydration etc which I’m sure other people will cover but the word ‘cope’ suggests that you might feel anxious - or you might just want to be proactive in your treatment. Best wishes
Hi, here is a link to all the resources for reading. It can be a bit overwhelming at first taking it all in and everyone has their own version of AF, I would start with the AF Fact File.
heartrhythmalliance.org/afa...
Once in that site you can also navigate using the Menu button.
Also use the Search 🔎 bar on this forum website to search what you want from previous posts, just check how old they are before replying them.
Also click on members badges or names to see their bio as some keep an update there as I do.
Hope these tips help, best wishes
Welcome to the forum.
Afib can be anything from a nuisance type event occurring once in a lifetime, or every ten years (how mine started) to a chronic debilitating condition which can lead to heart failure.
The former may require no treatment or medications -- my afib didn't for 40 years-- but the latter can often require multiple medications or catheter ablation.
Most of us fall between these two extremes, but support groups like this tend to be more heavily weighted with more serious cases, because those with very sporadic events may not require any support.
So keep that in mind when generalizations are made and don't jump to conclusions what you should or shouldn't after an afib diagnosis, because it's so dependent on both the frequency and duration of your episodes among other things.
A good cardiologist or ep (electrophysiologist) familiar with your individual history will be a helpful guide here, but doing your own research like you've already started doing is also a good idea in this one-size-does-not-fit-all condition,
Jim
How I managed with the condition:
a. Got myself informed and spoke with AF Association helpline and BHF helpline.
b. Joined this forum and asked a lot of questions- everything from hair loss resulting from medication to how do you describe these strange symptoms of the heart to the potential of specific treatments and procedures.
c. Paid for a private consultation with an EP so I had time to have my questions answered and to make it clear I genuinely wanted to put a stop to my persistent AF even though it wasn’t terribly severe. Surprised my GP with latest research-based guidelines suggesting early intervention and gained his support.
d. Had a couple of cardioversions that lasted no longer than a week but showed it was worth giving ablation a try.
e. Went on nerve wrenchingly long waiting list for ablation knowing the longer I left it the less chance of success for my persistent form of AF.
f. Had successful ablation last year and apart from occasional runs of ectopic beats am back to normal. Still consider myself Afib because those blighter rogue cells could start up again any time so will always take anticoagulants even though they seem to give me the other sort of runs.
Wasn’t sure what you wanted, but I found reading the bios of regular members here very useful. Take care and good luck!
No one will like my reply. Nonetheless, I recommend ignoring it all except for accepting basic medications like bisoprolol and Eliquis. Be your best healthy, which means eat lean and clean. Keep a correct weight. Exercise regularly, as well as your fitness level will allow. The stronger you are, the better off you will be. Don’t bend to accepting the Cashcow that the a fib medical establishment has become. A fib is normal for people over the age of 70. It won’t kill you as long as you are eating properly, exercising regularly and keeping a correct body weight. Do not fear it; conquer it.
Hi Lil - I don’t think it’s about liking or disliking other people’s experiences- the great thing about the forum is we can all give our own experience without fear of judgement or telling one another what to do or think. Agree with you on cash cows - Nye Bevan would turn in his grave at todays privatisation of our precious health service.
Don't say no one will like you reply, as I loved it. Mostly because it is true and it is a very positive way of living. I looked at my first diagnosed episode of Afib as a wake up call. Something had to change for the better. Problem is most doctors know nothing about how to help with lifestyle changes so in that department we tend to be on our own. chiropractors and holistic doctors are better than regular doctors in that department.
I’ve had cancer twice and dealt with it but when I was diagnosed with PAF I was in pieces. Took the wind right out my sails, terrified me. As lots say on here knowledge is power, it helps to read everything on it you can. Now, two years on I just take it in my stride, deal with episodes and not let it dominate my thoughts as it did back then. Wishing you well. Take care 🦊x
Thankyou. You too.
Try and stay as fit as possible. Maybe you can do walking or something similar. I started walking a lot, gave up alcohol altogether and some months later managed to get a cardioversion which has held up, only a slight arrhythmia now. Now I do fast walking everyday and go into sinus rythm for hours at a time. On low dose apixaban as consultant thought it wise.
I have had it around five years- it came together with Chronic Fatigue following a virus when I couldn’t get an appointment to get an antiviral but I am 80 and fortunate to have my husband do most of the stuff I can no longer manage. My heart has been behaving well for almost a year and a half on the current dose of Flecainide (100mg x 2 daily) so I don’t take anticoagulants any more which all messed up my digestion badly. We have found that we are all different and I hope you and the medics looking after you find what works for you.
I had my first AFib episode in March 2014, after I caught a nasty coughing virus at my sons wedding. It was very scary and didn’t know what it was, so rang 111 and they sent an ambulance, as I felt awful. They took me into A&E and they diagnosed AFib and gave me some medication which stopped it. I was already on medication for SVT, but they decided to change it to Sotalol and I had to stay in hospital for a couple of days, while I was monitored, as Sotalol can cause long QT syndrome in some people. I’ve been on it ever since and also on anticoagulants. I only got it a few times a year, but I get a very symptomatic one and my heart rate and BP really soar, so I was advised to go into A&E when it occurs. They like to keep an eye on me and try and stop it.
I found this website and asked questions, which was so helpful and read everything I could about it. The information sheets on here are very good, as are the people on here. Ask anything and someone will answer you.
I was lucky enough to be offered an ablation, which after a lot of thought and information from the people on here, I plucked up the courage to go through with one and I had it last September, as it is supposed to be more successful, if you only get AFib ocassionally.
I’m sure you’ll come to terms with it eventually and find out how to cope with it. Good luck.
Thankyou
Hi Tues
Welcome
First to meet an interested Heart Specialist and take questions on oebook with you. Go with informatio, your meds, twice daily readngs of H/Rate and BP. List your symptoms.
2ND step is get your Heart Rate and BP under control with meds.
The Heart Specialist will order an ECHO, ECG 24-hr Heart Monitor and take your weight.
Have 3 monthly blood tests to include heart indications, and B12 levels. Other levels Magnesium, Potassium, TRiglyerines and Cholesterol (Fasting). Also check the functioning of your Thyroid.
That will be starters.
I purchased a Microlife BP. It takes 4 small batteries and the chemist can order you one with your arm measurement.
Please let us how you get on.
I was diagnosed after stroke with rapid and persistent AF. 4 days later a carotid scan showed a shadow on my thyroid which was biopsied as Papillary Thyroid cancer.
We all have a beginning story.
Take care, JOY. 75. (NZ)
Thankyou
Hi
You are very welcome.
The journey can be smooth or rocky. Find someone who cares and litens to you.
Cheri JOY
Lots of good advice offered already, but I would simply ask how are 'you' managing? Some folk suffer with AF attacks, others, like me, have never experienced such an event. Apart from 'heart failure' that caused me a few worries nearly six years ago, I just ignore my wonky heartbeat. Yes, I've lost a bit of weight, continue to eat mostly healthily, and exercise (golf) as often as I can, at least twice a week. I found, overtime, that the various beta blockers, statins, and rhythm control drugs gave me more side effects than the AF . Now, I simply take my anticoagulant ( to reduce stroke risk) and get on with life. I type this sat at cafe table in the sun in Almunecar, Spain. So, if you don't feel unwell, you probably aren't too affected. Good luck, read this forum every day, and you'll quickly have a better understanding of AF than many GP's... P.S. we are not medically trained so if in any doubt about your treatment plan, talk to your consultant or pharmacist. But AF is not normally quite as worrying as it first appears.
Thankyou
Hi
Wow you are lucky.
I can't ignore my heart rate over 200 in which I need to contrl DAY. CCB Diltiazem did just that introduced by a PRIVATE H/Specialist.
BP control by Bisoprolol just 2.5mg.
No symptoms now. No pain, palpations or anything just need to stop on exertion now and then.
cheri JOY. 75. (NZ)
This month or next month?
You have to experience episodes to see if each one is similar and what it takes to recover; figure out how your meds are affecting you; and know when to go to the doctor, (pain, breathing difficulty, dizziness, sustained, extreme heart responses.)
Like all new important challenges, it will get better with experience as you gain confidence in knowing what you are feeling and how to be your own medical advisor.
Enjoy the good days and don't panic on the bad, as you and your doctor evaluate and experiment.
Wishing you well!
Fibnum
Start by finding the most experienced electrophysiologist in your area. Educate yourself from reliable sources. Learn what triggers you may have and eliminate or minimize those in your life. Afib is scary but usually not life threatening and manageable with proper care and life style changes. Many people on this list have been dealing with this issues for years and have managed to live full lives in spite of it. Face it head on and you will find a path forward.
hi i had my first bout of AF when i was 35, i'm now 66. Back then it was sporadic on average once every 5 years mostly due to too much alcohol or coffee then vigorous exercise within say 8 hours. I reverted by vigorous exercise within 24 hours. That worked until 2022, i've since had 3 episodes of AF all converted by cardioversion.
The cause of my AF is much the same as before but i now add eating too much food and too quickly. I'm now on low dose metoprolol, my cardiologist suggests in my case, not too slow my heart rate but to suppress the adrenaline spike one gets sometimes before AF. My resting HR is around 60-65 and with low dose Metoprolol it comes down to mid 50's. After my last episode late January he added low dose Flecanide, he started on 25mg twice daily and i've tapered it down to 20mg twice a day.
You might say i'm trying to get a sense of how little of a drug i can take whilst staying in Sinus. I've always been against taking drugs when natural things can help for some people.
I had my blood levels checked in August last year and i was quite low in Vit D3, Magnesium and Co Q10. I now supplement all three. I did start on 1000mg a day of the Vitd3 then saw a blog by Steven Carr and he suggested he's been AF and Ectopic free for 10 years after taking 4000mg of Vit D3. I increased to 2000mg a day and i must say feel a lot better. I try to exercise daily and get at least 7 hours sleep. I also sleep with my bed elevated at the head about 4 inches and sleep on right side. My wife says if nothing else my snoring has stopped! Who knows which of the regimes i'm on assist me... it might be a combo of all?
The Caveat is you must talk to your cardiologist before you try anything in the way of supplements as i did, to make sure they are happy
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