Hello, I have just discovered this page and have just read so many of your posts about Afib. I was diagnosed in November with persistent Afib, I'm 40. It was a huge shock and I've been feeling very alone despite excellent support around me from family, friends and work colleagues.
I'm learning to manage my afib, and respect that I have good days and bad days.
I started Flecainide yesterday and I'm awaiting Cardioversion procedure.
Any support would be greatly appreciated in this rollercoaster journey.
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Kezwan12
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Hi Kezwan, I was also diagnosed in November but with paroxysmal AF. I’m new to this group too but have already gained support and advice. It’s a huge shock I know, particularly in a younger person - I’m in my mid 50s, so you’ve got a few years on me! I’m still getting my head around things, but you’re not alone & people here will support and advise wherever they can.
Welcome to the club you didn't want to join. Askl any questions and we will try to help. AF Association have a vast amount of fact sheets and advice on the main website I recommend you work your way through.
Excellent! Thank you I will take a look. I'm particularly interested in exercise and what I should or shouldn't be doing. I'm currently walking most days, but can feel so fatigued doing even this. Thanks again for your reply 😊
Thanks BobD. It's difference of days, I think it's the beta blockers too. I do push myself, but wasn't sure if this was the right thing to do. I'm going to try swimming and see how that goes
Feel free to ask any questions, we're a friendly group and will do our best to help.
I've had AF for 18 years now and have gone through all sorts of emotional agonies, but finding this group was a godsend. The medical profession seem to tell you that you have AF, but nothing about it. I honestly thought I could drop dead at any time with heart failure when I was first told, what a relief it was to come on this forum and find out that wasn't likely at all.
Thank you Jean, that's reassuring. I can totally relate, basically told you've AF... here's some pills.... get on with it 😒 I'm hopeful something will work for me, either medication, cardioversion or ablation.
hello and welcome! You are now one of us, travelling this journey TOGETHER.
I was persistent too before diagnosed, I was in persistent from my mid 40s. Beta blockers I couldn’t cope with, they made me exhausted and I was put on digoxin instead.
Depending on where you live there may be an additional option to what you read on the AFA site which is surgical ablation (mini maze/hybrid). For persistent afib it has a higher success rate than catheter ablation but is carried out by a surgeon not an EP and so is generally not mentioned (or in some cases known about) by EPs.
I blogged my surgery on here if you look at my posts. X
Thank you 😊 yes I'm on beta blockers, I feel I am slowly getting used to them now, It's good days and bad days with the breathless. I will definitely take a look at your blog, thanks again x
Welcome to the forum where you will find friendly helpful support and the experience of many people who live very successful lives with Afib alongside.
Its a shock at first and tends to change our psyche temporarily while we get out heads around it. There are plenty of us out there who support each other through our highs and lows. Sorry you have had to join the Afib club but all will be well. Ask any questions you need ongoing there are always people here to give support and the AFA resources are excellent. You are never alone in the afib forum family. Best wishes.
Thanks I've had a quick look an the AFA it's fab. I feel so supported already 😌
Welcome Kezwan12! You will find lots of resources on our website here: heartrhythmalliance.org/afa... I recommend the 'Mindfulness and Healthy Living' booklet as I see you are interested in exercise tips. Please feel free to contact our Patient Services Team if you have any questions, or would like some advice or support outside of the forum on 01789 867 502 or email: info@afa.org.uk
Hi love this link.I have read some of these but some I haven't.This is so comprehensive .I might even learn things that I have missed in 5 years.Thankyou
Hi Kezwan - fellow traveller with AF. I'm so sorry you're having to deal with this so young and wish you a good healing journey. I'm newly diagnosed and at 69 am still very fit and love walking and dance so have just been doing what feels right. Stairs and hills are suddenly a challenge so I just keep tuned to what's possible and hope after a few more tests a medical procedure (along with qigong, acupuncture, relaxation, healthy diet etc) will help me get better! Good luck!
Yesso! stairs and hills are definitely a struggle now, I have to go real slow and even stop sometimes to catch my breath. This is awful as I've never experienced this before 😒 thank you I feel reassured that I will find some normality with my fitness, and need to learn to pace myself! Good luck to you with your procedure 😊
Hi welcome. I'm also quite a newbie here although I've had undiagnosed afib for years. Initially blew my mind on diagnosis but learning to live with it. I'm still paroxysmal but symptomatic with weekly long periods. I found the initial anxiety does go away. Worrying about looking after family and work. Ect
I can relate to this too tommyboy 21. I feel anxious about how my life is going to be from now, work can be strenuous and stressful at times... I worry will I be able to still do this? Getting a diagnosis makes you think of anything and everything.. I guess it's best to try and take each day as it comes, although easier said than done 🙈
things will work out Kez. The early times are the worst. As time goes on and you learn more about the condition and get offered treatments etc you will find your self in a better place. I was a mess when I was first diagnosed but as time went on I eventually got my head around it all tried some different meds and had some ablations and I’m still here working full time, running around after grandkids, and still enjoying life.👍 you too will end up in a better place.👍
hello Kezwan12, im pretty new here too although I have had AF for more than 20 years. I was diagnosed in my early 40s and remember the shock. I’ve had cardioversions and ablations and honestly the actual procedures are fine (you wouldn’t choose them obvs but they’re no where near as bad as you’ve been dreading). Ablations have given me long periods to feel perfectly normal and healthy and to do everything in my life I wanted to do. And bit by bit I’ve learned to accept that AF is with me forever - it just needs to be respected with healthy living and supported by the medical system.
My AF comes and goes. When it comes its pretty awful unfortunately and I’m now facing different challenges. I’ve found joining this group so helpful and supportive and I’m reading around my particular condition and learning - and growing in confidence. So I’m pleased you’ve found the group too. You are certainly not alone. Share your worries, inform yourself and try to stay positive - we are all here to support you.
Thank you so much 😊 your right I am dreading and procedure, but it it makes me feel better I'll do it. Sorry to hear your facing other challenges as well as the AF. I'm making alot more healthier choices now, and do feel better for it.
Some of the best advice that I had was to cut out caffeine and alcohol completely. After my first cardioversion, it was 10 years before the af came back. I was 59 when I had my first episode.
I saw you're wanting to exercise and have just started Flecainide. From my experience, you'll have more energy on the Flecainide, one of its advantages. Brisk walking is good - test out hurrying for up to a minute, then slowing down or stopping. Even before my ablation I had days when I could jog for 30 seconds during interval walking. On beta blockers alone I couldn't do a flight of stairs without aching. Loads of great advice here so I won't add to it.
Thank you, yes the beta blockers make me feel so tired during exercise, some days are really difficult, but I push on. I'm on day 4 of the flecainide and I actually feel OK? Not sure if it's too early to be making a difference.. but I don't feel as whacked. Maybe just having some good days? It's all still a massive learning curve for me. Thanks again for the advice I will try the brisk walking 😊
It IS a big learning curve and early days yet. There are more options for you I'm sure than you might think at present. One of the issues with the NHS is that they tend to diagnose, give you a pack of pills and leave you to it. No advice as to management. Re Flecainide, I felt a difference within a week although I imagine it depends on the individual. My legs stopped aching when i walked up a small.hill locally and I began to feel I could.jog a little. Though tbf the latter took a bit longer due to loss of confidence. My thinking was to teach the heart how to increase rate and then decrease on its own. For me that worked. For others 'stressing' the heart with exercise might might've caused AF to come on. Short bursts are a good way to experiment. My experience only of course.
Welcome - but I’m sorry you have to be here! This group is a wonderful source of information and support. In my experience the early days can be quite an anxious time, so do let the experience here help you. 😊
If you are like many with AF, then I guess a good deal of what you are feeling will be in your mind. That's my experience and conclusion. To feel reassurance that you are not about to keel over and meet your maker is what is most badly needed and this can only come from a doctor you trust and tests that are worthwhile (these being an echocardiogram and, if needed, a cardiac stress MRI). With these under your hat, you will feel such blessed relief and reassurance that life will feel great once again. For a time. Then that will wear off! . But it will never fully wear off and it will allow you to find a way of living with a condition that is most unlikely to cause much lasting harm to you, even if, at times, it feels as if it might be the end of you. It won't be. My elderly friend is nearly 90, and my son's colleague is 78, both with the same condition, and both well.
No doubt you have been given the necessary drugs of a beta-blocker or an anti-arrhythmic along with an anticoagulant, if deemed necessary, and advised what an ablation might or might not do?
Yes I'm currently taking beta blocker, anticoagulants & anti arrhythmia medications. My cardiologist has mentioned ablation but wants to try cardioversion first. I do feel terrified at times when and worry about my future, but I guess these anxietys will eventually settle the more I learn to live with AF. Thank you for you reply 😊
They assuredly will settle. My son’s colleague has had, if I recall, six ablations over many years going back to the days when they were rare / and still it’s returned, now as atrial flutter. And yet he and his heart are fine.
My advice:
- be sure you treat sleep apnoea
- get your weight down if you need to
- be active
- treat hypertension and diabetes aggressively with exercise and any necessary drugs
Luckily I don't have any of the above issues apart from excess weight which I am working on, I walk almost daily, and hope to be more active when I'm used to the meds. Thanks for the advice 😊
Hi Kezwan 12, Welcome, although this is not really a club you like to be in, it’s an exclusive club with lots of advice from people who have very different experience’s. I have had AF and Multi focal tachycardia for over 12 years, and was undiagnosed for years before that. I had numerous holter checks to try and find out what was going on. I eventually went to see a consultant privately as I needed holiday insurance. He was brilliant and pretty much explained what it was immediately. I’ve had two ablation’s which worked for me for a while, then back on the pills. It’s a condition which has to be managed and can be managed very well. It’s all about talking to your EP or consultant to get the right treatment, I hope all goes well for you in the future. Happy Christmas to all AFibers out there and keep smiling 😀😀
Hi sorry to hear you've become a member and in response to your comment on not even being able to walk comfortably reminded me of what happened to me when I was diagnosed many moons ago and was put on a beta blocker. I couldn't understand why I suddenly could not walk anywhere without feeling half dead and realised it was the Atenalol BB. It was a shock but over the years my body has acclimatised to all the various drugs I've had to take. I finally just half way through this last year went for the Pace and Ablate procedure and am now drug free except for blood pressure and anticoagulant. However I am ancient compared with yourself and you will find along your way that things will sort themselves out and you will find a suitable solution to your journey. Have a good Christmas.
Aw thank you 😊 that's very reassuring. Yes it's got to be the beat blocker making me feel so lethargic. As It came on so suddenly. Have a merry Christmas too 😊
Hello Kezwan, I can understand your feelings; I was diagnosed with AF 6 months ago, having being told for the past 4 years that I was having 'panic/anxiety' attacks. I was relieved to get a diagnosis because my original medication wasn't making any difference. Also, I'd never heard of AF beforehand, so I was then put on blood thinners, and now on Flecanide twice a day, and a lower dose of Bisoprolol. I am 75, and find this condition debilitation when I have 'episodes', and it is also very scary. I'm trying to identify what actually 'triggers' the attacks, and now trying decaf tea, to see if that helps. Unfortunately my husband has now been diagnosed with Alzheimer's dementia, so it's hard to 'reduce anxiety and stress' (advice I've been given!) as this isn't ''going to go away''. I think I must find a way to 'learn to live with AF' and adjust as much as possible. I'm still trying to find ways of 'reducing the effects' of an AF episode, as they often happen in the middle of the night ... which feels worse than the day time. I certainly don't want to go back to A&E again. You are lucky to have support from friends and family. That can make a big difference. Good luck in 2023, and I hope you are able to get this condition under control.
I'm sorry to hear about your husbands diagnosis, it must be tough for you trying to juggle both of your health issues 😞 what dose Bisoprolol do you take if you don't mind me asking? I've also switched to decaf coffee and tea and have stopped alcohol, as I found this was causing my heart rate to go up and had discomfort in my chest.
Hello, thanks for reply. Yes it is trying coping with things, but we have good support from our 'Dementia Nurse' team. Just miss not having family close by to see and talk to. Regarding medication, I take 1.25mg Bisoprolol. It was reduced from 3.75mg when I went onto the Flecanide. Cardiologist advised I can take an extra 100mg of the Flecanide WHEN I have an episode. I'm hoping this will stop the symptoms during 'an attack'. (I also take Levothyroxine 100mg in the morning) and Edoxaban after breakfast. Hope you had a good Christmas and all the best for 2023.
My advice is to watch the YouTube videos of @YorkCardiology (Dr Sanjay Gupta) & read the blog posts of the American electrophysiologist Dr John Mandrola - both very sensible, measured voices in the world of AF. They have been a very calming influence on me (Diagnosed at 34, now 49).
that is great advice. As you are in persistent I would also suggest watching this, it’s training for EPs on persistent afib treatment. It’s excellent as provides lots of study information and is very balanced on approaches. Hybrid referred to here is a minimaze and catheter ablation, many people only require the first part (like me).
thank you so much for linking this video. I watched it carefully and it has really helped me understand more about the procedure I have been offered. I see my EP on Thursday and will be prepared with questions. Thank you again.
Yes this group is very helpful. I have PAF, which is horrible when I get an episode of it and it made me very anxious, but I found Hypnotherapy and the information. on here, from people with the same condition, has helped ease the anxiety. I’m waiting fora catheter ablation, still a bit unsure and nervous about that though, but there’s a long waiting list for it, Hope you feel a bit better about your condition now.
Thank you I can't tell you how reassured I feel. The support is amazing in this group. My husband has been amazing too but he doesn't really understand my worries. Good luck with your ablation procedure 😊
Hi, you’re no longer alone as everyone on here will get you through. I was put on Flecainide in April following my first cardioversion. Had a few ups & downs with side effects which later settled. Had a second cardioversion in June which only lasted 6-7wks but my fibrillation changed to flutter which was just ablated 4 weeks ago. Still on Flec at moment as not sure if I will revert back to fibrillation if stopped. Review in Feb. Happy Christmas 🎄
Welcome to the forum Kezwan. There are many people here who have been coping with afib for years and who have very good advice. It is very important to try not to let the afib stress you too much as this provokes a vicious circle. Not everybody is able to tolerate beta blockers especially at high doses and other drugs are available to reduce heart rate . Personally I felt like a zombie on Bisoprolol and it definitely made me breathless. I have found taking a magnesium supplement helps with anxiety and some others here have found that it helps lower the frequency or mitigate the symptoms of their afib episodes. Hope you get your cardioversion soon and it works to put you back in NSR.
Kezwan, I am a lot older than you, but recently discovered that a deficiency of Vitamin D seemed very significant in the development of my AF. See my Bio.
Please ensure you get appropriate blood tests to avoid any potential deficiencies. I also support the list of important factors posted by Ppiman above.
Re the importance of Vitamin D to health generally, and to AF, you will find many articles online. However, this recent article on Vitamin D and mortality rates seems especially important for everyone ...
Hi Kez, I’ve had intermittent persistent AF since age 52 . I was so shocked to get this at that age so 40 is a real shocker. I read that you said you are carrying a little excess weight , I am too , which is the hardest thing I’ve found when trying to get healthier , especially being on beta blockers ( I was on 10 mgs when first diagnosed but felt like death warned up !) I just can’t shift it unless I starve myself , which is obviously no good ! And every cardiologist I’ve seen has said that my main cause is obesity , which I have found very upsetting , having constantly been on slimming world , weight watchers , fast 500 etc etc !Anyway , just wanted to say that I empathise !!!
My AF came on after a bout of serious clinical depression when I had barely eaten for 12 weeks and was at my slimmest . I feel sure that my biggest trigger is stress and anxiety and last December when I had horrendous family stress , sure enough , back to persistent AF . This lasted until March when I had my second ablation ( radio frequency ) . Unfortunately the AF came back in August of this year and I had 3rd electrical cardioversion on October 2nd . Worked with only 1 shock and I was overjoyed . Now back on antiarrythmia drug ‘ dronedarone ‘ and just 2.5 mgs bisoprolol which I seem to be able to exercise on , although hard to get my heart rate up to 120 which would be my sub maximal level for my age . Hoping to come off the beta blocker in my 3 month post CV review with arrhythmia nurse next year . Or at least reduce even lower to 1.25 mgs .
My EP said to me that it was safe to exercise in persistent AF but it would ‘feel terrible ‘ . I managed steady dog walking only as got chest pain , shortness of breath and dizziness if tried to push myself further . Now 11 weeks in lovely sinus rhythm I can swim a mile . and walk 6 miles with minimal SOB , so I’m really happy with that . I was never a marathon runner but do love to exercise and be outdoors . I have more to say but feel
I’m taking up too much space so PM if you want me to carry on ! Best wishes
Hello Kezwan12,I was happy to find this site as well...answered several things that my doc and medical literature didn't. It is freaky when your heart does this electrical waywardness!
Cardioversion should get you to normal rhythm, if you're currently still in AFib? Seems to usually be the first step if drugs alone can't do it. By in large cardioversion doesn't "solve" it though...ablation may be the only answer there, though even that may have to be done multiple times and is not a 100 percent guarantee for everyone. That seems the normal progression of treatment.
Personally, at this point on the AFib conveyor belt, I am 3 weeks post my first ablation. Over a year ago I went to the hospital in AFib, drugs didn't work, and a few days later cardioversion got me back in sinus.
Fleicanide and beta blocker then worked well for about a year! Then AFib episodes started slowly creeping in again...so I became a candidate for ablation. That procedure was a little harder in me than I expected, but am healing up ok currently.
Personally I was about 50 when all this started, active lifestyle, relatively fit, heart healthy in every way except for this. Triggers can be different for everyone..some avid runners have long runs kick off AFib, while some may be alcohol and or stress, and so on. It is definitely a journey..
But you sound like you are on exactly the "normal" path to getting treatment and finding relief! As many here will attest..it is freaky on the beginning...I had zero idea what AFib was before suddenly I had it .. before that I just called it my "weird heart days".. those days I couldn't exercise, felt lethargic, dizzy, generally blah, and all that chest flutter. I've come to appreciate sinus rhythm greatly..something I took for granted all my life. You will get there!
hi I think you’ll love the people hair. Even though we are all different we understand each other. You have a good head on your shoulders handling having a fit now. I’ve had it for two years and I have seen so many different sides of it. I am very happy to see you are getting a cardioversion soon. I have recently learned the earlier during the discovery of your a fib the better chance you have of success. It makes me wonder why no one did it for me early on as I just had my first one the end of October and an attempt for a second the other day. Please let us know how you are doing. Any questions etc. someone on here has the experience no doubt. Merry Christmas
Hi. As you are already aware, this site is a godsend. I was diagnosed in 2013 and found the beta blockers really slowed me down. Luckily I was given an ablation quickly and immediately syarted to feel better. Back to pre AFib days in about a year. I was 63.
I have largely been free of af since then although odd episode in the last year or two but nothing serious.
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. But it will never fully wear off and it will allow you to find a way of living with a condition that is most unlikely to cause much lasting harm to you, even if, at times, it feels as if it might be the end of you. It won't be. My elderly friend is nearly 90, and my son's colleague is 78, both with the same condition, and both well.
Thank you
Thank you - all of you lovely people
Thank you 
Thank you:-)
