How many years have you lived with afib? How is your quality of life?

[li17]

How many years have you lived with afib? How is your quality of life?

I'm looking for hope...

[SteM]

My first experience was in 2001 when the ectopics started. By 2006 I had been diagnosed with loan paroxysmal AF and in 2007 after cardio version I was put on Flecainide. Since then I have learned to live with AF and i have a very good quality of life, very active, work hard, ski, cycle, walk,go to the gym, just have to watch what I drink. I now take Bisolprolol with the Flec and have recently added Magnesium and all going well.

[secondtry in reply to SteM]

No problem here either, just on Flecainide, first diagnosed in 2008. But I think you should be prepared to make lifestyle/diet/supplement changes, all covered comprehensively here.

[NickiC in reply to SteM]

May I ask if you’re anticoagulated? I’ve been a pretty much life long skier, horse rider and hill walker; I’ve kept walking since a stroke but have lost confidence about the former two. I know we’re all different and I’m not asking for advice, just your experience.

[icklebud99]

Hi Li17. I was diagnosed with PAF 5 years ago and when I have an AF episode I have terrible symptoms, very lethargic, unable to walk more than 2 or 3 steps without having to sit, very breathless in fact it totally floors me. With that in mind I have pushed and pushed to find the meds to alleviate the symptoms. I was encouraged by a Paramedic to call for an ambulance when I go into AF so it can be traced for proof with an ECG and that's exactly what I did. I feel because of this, (even though I spent long hours in A&E) I was quickly referred to see a Cardiologist. I put on Bisoprolol to start with which had bad side effects and gained weight very quickly, so changed to Sotalol.

After reading NICE guidelines I found the advice was not to use Sotalol as it can cause other rythme problems in the heart so I went back to the Cardiologist and questioned this (I am in Scotland where it is still used). quoting the NICE guidelines and without saying too much she changed me to Flecainide and Atenolol. I also take Riveroxiban for anticoagulation and began taking magnesium after watching Dr Sanjay Guptas video on this. This combination of drugs has changed my quality of life for the better, I am a dog walker so am now able to enjoy this where I struggled to complete an hour. I am at present waiting for a cryoablation (12 week waiting list) with the hope to come off drugs if possible but all in all, quality of life can get much better so persevere and stand your ground with GP and Cardiologists. Read as much as you can about this condition and do not put up with AF for long periods without seeking help as it speeds up the process. Yes there is definitely hope so keep pushing and things will improve for you. Good luck

[CDreamer]

Diagnosed in 2007 but had it for quite a few years prior to that - so 10-15 years?

When I only had AF it rarely affected my QOL - very occasional episodes until 2013. Since then I had 2 ablations - AF free for 2 years but then developed sudden onset symptoms of an underlying condition which affects my QOL far more than AF. When both kick in together I have no QOL.

What are you hoping for? What are your concerns - i think it would be helpful to talk about those as your question is so general.

AF doesn’t worry me but then I have now accepted that I will have goo times and bad and am not searching for treatments or cures, but took me a while to get there.

[li17 in reply to CDreamer]

Thanks! Im hoping to see some success stories that people can live well with afib.

[CDreamer in reply to li17]

Wellness is a state of mind, not a physical state. I live as well as I can with AF and other conditions but it depends upon your circumstances.

What exactly are you hoping for? Encouragement? Support? How will reading stories of people living well help you?

All rhetorical questions to ask yourself - no need to post here unless you want to.

[Hidden]

li

Search tachp here

Cultured artistic polymath with AF 50 years+ and still going strong at 80. That will give you all the inspiration you need

How are you getting on with the Bupropion

[li17 in reply to Hidden]

I have stopped bupropion. I feel extremely anxious and uncomfortable after start taking it. And I tried to contact the psychiatrist to ask about it but they never return my call. I now resume taking lorazepam 1mg per day and planning to wean off in a few weeks.

[pilgarlick]

Maybe I'm one of the lucky ones, but I've been on 200mg of Flecainide a day for over twenty years and have no side effects at all. And the rhythm is kept more or less under control.

[Finvola in reply to pilgarlick]

I love hearing about people in your situation, pilgarlick - hoping to be one of them. 🙂

[Emsysy]

12 years and counting with permanent AF. It gets better with time once you find the right level of medication. My lifestyle is as it was 12 years ago AND I’m 12years older, of course !

I always say.....be the boss. Don’t let the bu*#@rs get you down.

[Amcech]

Diagnosed in 2010. Have tried 3 ablations and a variety of drugs. I'm currently taking xarelto, coreg, and amiodarone (which I will stop taking the amio in March). The only time I have a tough time is when I go into afib from nsr. I get very tired and weak but that subsides within 24 hours. I still go to work, just slowly, I'm a preschool teacher and 62 years old. I have chosen to keep taking the coreg to control my rate but will stop the amio and just see what happens. I think rate control is more important than rhythm control.

[Hidden]

My 2 year anniversary with afib is this month.The first year was horrid,,multiple trips to the ER,many drug reactions and adjustments,and an overwhelming fear of dying from this..somehow I moved past this with the help of cognitive behavioral therapy and changing my EP 3x to one who listened,, I gave up coffee,alcohol and try not to dwell on what I can't do but focus on what I can do,,I am very fortunate to have minimal episodes but do live with annoying ectopics daily,,. Your outlook if positive may help you a lot!

[Finvola]

Diagnosed in 2014 but had symptoms from 2006. I started 200mg Flecainide in 2014 and have had no AF since then. I have made dietary and social lifestyle changes - avoiding alcohol, excess sugar, artificial additives, processed food and irritating situations, as well as Mindfulness have probably made me healthier than before diagnosis.

Once I accepted that AF is there and is likely to return, I stopped worrying about it, pushed it aside and got on with my life. I do everything I did before diagnosis, just a little more slowly and I think of my QOL as ‘good’.

[doodle68]

Hi li 17 . I had my first 'strange episode' over 10 years ago having dug up a conifer. I thought I had over exerted myself and it never occurred to me the episode could be related to my heart. I felt shaky, breathless , faint and sweaty with an odd sensation in my throat . It only lasted about 10 minutes.

I had further short episodes, the breathlessness I put down to a chest condition. Then about 18 months ago the episodes became more frequent and prolonged lasting hours and with the same horrible symptoms I first experienced all those years ago. I thought to check my pulse during an episode and it was fast and chaotic.

I was eventually diagnosed with Paroxysmal AF last May after getting myself to the cottage hospital during a bad episode and requesting an ECG. I was prescribed beta blockers and anticoagulants and spent a couple of weeks in a daze scared to do anything and convinced I was going to be found dead (I live alone out in the countryside.)

When I realised I wasn't going to die at any moment I thought I better pull myself together and see what I could do to help myself, no one else seemed bothered . I found a lot of information about lifestyle changes and weight loss having a possible effect on the progression of P-AF.

So I stopped all alcohol (I like a glass of wine but it was 'wasted calories' and I didn't want to add to the cocktail of chemicals I was getting from medication ) improved my already good diet, ate less, lost weight,walked more and avoided stressful situations.

I learnt not to become anxious when having a bad episode , it was going to happen so it was pointless to fight it. Instead I do breathing exercises and stay calm.

So far my medication is not causing me any problems, I had a headache to begin with but that settled down. AF no longer worries me, I am used to episodes they are part of my life now .

QOL is good I can't wait for the spring and to get out in the garden planting vegetables and walking the fields in sun rather than the mud and rain we have at the moment. I think I will give a miss to digging up conifers though

[NickiC]

I don’t know! I thought I had post menopausal “palpitations” for a while until a stroke put me right. My quality of life is pretty good as the AF, when it happens every few months, is short lived and unproblematic - even now I really only know I have it when I see my chest jumping about. I have an Alive Cor device but only use it rarely and usually to confirm AF. My biggest quality of life issue is lack of confidence to get back to skiing and horse riding both of which I love. I suppose it’s sensible to be aware of the risks but I think I’m unduly anxious. Best wishes.

[looby1660]

Hi, I’ve been living with Afib for around 28yrs, I’m in my early 50’s so it’s been right through my child rearing years. I had a rocky start whilst they tried to control it, bisolprolol and amioderone caused serious side effects and made my general health worse which was tricky as my children were small. After meeting somebody else with it who told me she was stable on Flecainide (100mg bd), I pushed for it at my next appt and have never looked back. I have struggled occasionally with fatigue but on the whole the Afib has been very stable to the degree that I haven’t seen a cardiologist in 10 yrs. I can’t get an appt as it’s ‘about need not want!’ I was on aspirin in the early days which gave me a mild ulcer. Those symptoms are controlled by esomeprazole. So after 28yrs, I feel great (the ticker may give a wobble if I’ve forgotten a Flecainide for some reason but that’s not often) and I just take Flecainide and Esomeprazole every day. At the beginning they told me I would have this for life and that I should just go out and live a normal life... as it was a few years to get straight, it was a while before I felt I could do that, but they were right, get the meds to suit you and it can be controlled. I’ve thought about ablation but as I’m so stable, why rock the boat?

[li17 in reply to looby1660]

Thank you for the story. 28 years is a long time for one's life span. I don't dare to imagine to live 28 yrs with afib. Hope I can get comfortable with it soon.

[Cath1136 in reply to looby1660]

Hi. Without having a cardiologist, who prescribes your flecainide?

[dedeottie]

I have had AF for around 17 years but only diagnosed for about 7. I had a dodgy couple of years after diagnosis while I came to terms with it, wallowed in self pity for a while then dragged myself back up and started taking control of my life again. It took a while to activate the necessary medical services but once this was sorted out things got much better. I joined this forum and with help from folk on here found an EP. , began rhythm and rate control meds, had an ablation which was partially successful so I could reduce meds a bit. I cleaned up my act by giving up coffee and booze. I lost weight and cleaned up my dietry habits and I would say that life is very good. Apart from AF hiding in the background I am healthier than ever before. I did feel sad that I gave up my lifetime hobby of horse owning and ridin g. I felt I was asking for trouble if I continued as falling on my head was probably not a good idea. However I now have 2 wonderful dogs who accompany me on long daily walks over the South Wales countryside. Yes , life is good.

You too will get to this point.

X

[li17 in reply to dedeottie]

Thanks for sharing. I can't imagine 17 years. I was just diagnosed 5 months ago, I've been feeling like a century long. Can't imagine how to live life like this for many years.

[Bee-Honest]

Diagnosed with paf in July 2002, aged 50, had several episodes over 8 months, which I put down to a 'bug or virus' causing me breathlessness, palpitations and a strange weak feeling. After being diagnosed I had several episodes over the next few years, each time ended up in hospital on intravenous amiodorone , AF makes my heart rate go very fast. Tried several medications before Flecainide, it works well although I'm on 200mg daily. However 6 years ago had a slight stroke, so now on Aspirin as well as Warfarin. Risks are slightly higher taking both, but Cardiologist says my need out ways the risks. QOL is good, compared to some, but lifestyle is important. Reduced coffee, alcohol, and stressful situations helps.

Good Luck.

[SRMGrandma Volunteer]

I was diagnosed in 2002, and it was a rare event for me for the next 7 or 8 years. Eventually it got a little more frequent, but mostly controlled by lifestyle. A bout of pneumonia in 2015 put me into persistent AFib and an ablation fixed that. Throughout it all, I never let it stop me from doing anything, though it did put a damper on some celebrations. The best thing, is I learned a lot about stress management, ditching my Type A personality, eating healthier, and the importance of exercise and good sleep. So all the way around, it's still a win.

[Hidden]

8 years. Excellent.

Am on Warfarin and Bisoprolol for AF and for the last 11 years (3 years before AF hit) I am on Ramipril and Felodopine for blood pressure and Simvastatin for cholesterol.