paf or permanent af

[trixie100]

I suffer from paraxysmol af and as an attack gets longer I become more breathless an exhausted I cannot understand how some people prefer to be in permanent af any thoughts please?

[rosyG]

Everyone is different snd some in permanent hardly gave symptoms. Sorry you get so breathless

[jeanjeannie50]

Hi Trixie, I'm one who went from PAF to permanent AF.

My PAF attacks were awful and over a few years I spent many weeks in hospital. I had 3 ablations and it was the third one that helped most. After that I still had the PAF attacks, but never again needed to be admitted to hospital, but I did have a few cardioversions when my attacks were debilitating and had lasted for weeks. My last two cardioversions were in February and October 2019 . A few months after the October one I went into permanent AF and my AF nurse said I'd had enough cardioversions and they wouldn't attempt any more. I wasn't happy about that at all! However, I've been in AF now for 15 months and would you believe I hardly give it a thought. I do long walks and walk up and down very steep hills (probably a little slower than most). Some days I have more energy than others like most normal people do.

The biggest thing that has helped me though is to stop stressing about it all. Anxiety feeds my AF and the more I concentrate and fret the worse it can become. Honest after 16 years I've had enough and it's not getting any more attention from me.

I also eat wholefoods and never ever anything with artificial additives. Avoid alcohol and too many sugary foods. I sleep on my right side in bed, the left side makes me very aware of my heart pounding.

Hope this helps, feel free to ask any questions.

Jean

[trixie100 in reply to jeanjeannie50]

What a wonderful reply jeanjeannie you give hope to many! Thank you

[Ianc2 in reply to trixie100]

Hi TrixieI have permanent Afib . I am 75 and have reached a stage in my life where it lurks in the background, but nearly all of the time that's where it stays.

It's all a bit of a battle, you have to get all your other ducks in a row, especially what you eat, how much you weigh and how much you gently exercise. If you can , find a nice flat path to walk gently along for a set period of time, perhaps trying 20 minutes to start with.

You can slowly build your stamina and help your breathing improve. You will need to check with your Dr first as it will need to become a way of life and it won't happen overnight.

Some people are lucky and can Identify triggers like coffee or alcohol, others find that certain foods like sugar rich biscuits and cakes disagree with them. Carrying excess weight is definitely not a good Idea.

I agree with everything Jean says but it is difficult to get all your measurements where you want them and then keep them there. You have to work at it, but it can be done.

[Fibber222 in reply to Ianc2]

I have just read your post Ianc2 and also found it very helpful. I’m not in permanent af yet but I’m beginning to think I may be heading that way with episodes every few days lasting longer and longer average 14 hours. I fret and just want it to stop and find it hard to relax whilst it’s going on. I can see that others have put up with far worse and I wish I could cope better. I am 78

[Fibber222 in reply to jeanjeannie50]

Hi Jean, I’ve just read your reply to Trixi and Im beginning to think I may be starting to walk that path. Everything you say is so true but so hard not to fret when it’s happening. Your whole ethos sounds so wise and so helpful. You’ve had quite some journey and I so admire your acceptance and attitude.

[jeanjeannie50 in reply to Fibber222]

Thank you for your kind words.

To be honest, I just got so fed up with AF dominating my life and after years of suffering anxiety when having attacks I started to discover things in my diet etc that triggered them, but the main trigger was my mind. For instance one evening I'd got into bed, thought how calm my heart felt and wondered what rate it was beating at to feel so perfect. My blood pressure machine was on a dressing table away from my bed so I got out and retrieved it, by the time I got back into bed my heart was thumping wildly. If I'd stayed in bed and accepted my calm heart that would have been how it would have stayed, but no I'd switched my mind to 'What's my heart doing' mode. I could give you so many examples of that happening. I had also discovered that artificial sweeteners, additives in foods and excessive consumption of sugar could trigger an attack.

Now, I don't give much thought to what my heart rate is. I think I'm in constant low rate AF between 65 to 100, that's what my AF nurse told me last year, but I feel ok so I'm certainly not going to keep checking and making the situation worse.

Jean

[Snowgirl65 in reply to jeanjeannie50]

Yours is the best response I've ever seen from someone with afib. I too have PAF and am debating whether to have a dual-chamber pacemaker and up my dose of meds, or an AV node ablation. Did your body eventually get used to permanent a-fib then, and found another way to build up strength for your walking, etc.? By the way, I'm a Jean too!

[jeanjeannie50 in reply to Snowgirl65]

Thank you Jean.

Yes, my body got used to the constant AF. The more I ignored it the less I was aware of what it was doing. My EP had told me that he wouldn't do any more ablations either after I'd had three. I was the only person left who could do anything! So changed my diet drastically, I've had to do that more lately as I have gallstones. So cutting out fatty foods and eating whole foods is now my life and my goodness I can tell you it works for me.

Does your heart rate go low, is that why you may have a pacemaker fitted?

Jean

[RoyM]

My AF journey started in 2009 and the attacks gradually became worse over the years, in and out of PAF was awful. It ruined many a holiday and family gathering it was quite debilitating. I was due an Ablation in May 2016. However, 5 weeks prior to the Ablation day I went into persistent AF. I kept my Ablation appointment with the EP at LHCH, during the appointment we discussed how I felt in persistent AF....I felt "normal" my heart rate was resting in the 60 -70 range. It was decided to postpone the Ablation....jumping forward nearly 5 years I am still in AF Now classed has Permenent ( both the consultant and I agreed not to attempt to return to NSR ) I don't regret the decision at all. In my case permenent AF is much easier to live with...I can walk 5 miles without issue, I cycle, swim and most importantly I can chase my granddaughter around lol my medication consists of Apixiban and 1.25mg Bisoporol. I have been discharged from the hospital and have stopped chasing the holy grail of NSR long ago. Just simply getting on with life. Regards Roy

[Fibber222]

Hi Tricia, I amIn a similar position. The last 2 weeks episodes have increased and lasting 15 hours plus. I am seeing my cardio tonight for poss an echo which is due now ecg etc., Like you it’s horrible and wears me out. I’m

Hoping he will change meds. Can’t help getting anxious and that doesn’t help I know. I wish you well but we are not alone methinks.

[Enable]

I'm 59 male and have been in permanent af for about 3 years now. Like Jean most of the time its just in the background now so I can get on with life and walk quite briskly for about an hour every day. I am not overweight and eat quite healthily, I drink one cup of proper coffee each day then its decaf tea and I have just 1 pint of Guinness when I meet my Dad for lunch once a week ( in normal times) otherwise I dont drink. I do get the odd day or a few days together where I feel more tired and drained of energy but most of the time I feel good and even forget its there sometimes. At night I sleep on my right side like Jean so I cannot feel it. I just take 2.5mg of Bisopolol every morning. So thats me, I've got used to it I guess.

[Ianc2 in reply to Enable]

Hi EnableAt 59 I think it might be worth asking to see a EP regarding the possibility of an ablation?

[Spinners]

Hello trixie

I have chosen to stay in permanent AF and can only say that symptoms are very variable, not only from person to person but also within the same person. I had paroxysmal af for years and the symptoms really made me feel dreadful. When it became permanent, I had a cardioversion, but after 4 months I woke up in Afib again. Saw my EP at the start of last year, and we discussed options. As my BP was very erratic, he was hesitant to retry cardioversion and in the end I chose to try living with AF and adapting my life style, as he explained the risks were no different.

At that point, I relaxed and the Afib symptoms improved. I live a relaxed life avoiding stress as much as possible. For example, I always ask for appointments after 10 am so I don’t have to rush and don’t do as much as I used to. I still get out of breath fairly easily and didn’t tolerate the recent cold weather very well. My EP also sent me for tests for sleep apnea as I was so tired all the time and I have moderate sleep apnea. The results took months to come through with Covid and so I bought a head wedge, and that seems to have solved the problem. Whilst sitting here I am totally unaware of my heart beating.

Hope you will find the best solution for your problems as well.

[amyrosie]

Better the devil you know. I have been in permanent AF for 2 years now - after 3 years on Amiodarone which kept me in NSR but had to to come off it because of overactive thyroid which made me feel worse than any AF symptoms!! After checking my little machine daily, previously, and getting all stressed and thinking every beat was going to be my last when I saw the AF 'symbol', I know it is there all the time now and can live with that, so don't bother checking. I keep an eye on my BP. Yes, I am aware of it in bed and also can't sleep on my left side. Also it pounds if I have eaten a heavy meal and becomes more erratic when I get stressed. I do get breathless, but I guess a lot of 70 year olds do anyway. But all in all I have got used to it. I am driving an old jalopy and not a smooth new porsche, but so far it gets me from A to B and at least my heart is still beating!! xxxx