What’s it like? : I have had PAF since... - Atrial Fibrillati...

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What’s it like?

Crumble2 profile image
10 Replies

I have had PAF since 2013, and controlled it a lot with diet, exercises etc. I started with a 5 year gap, then 3, then 2 and now settled to every 3 months or so. I realise I’m probably going to go into permanent Afib at some stage (if that isn’t necessarily true, please tell me). My question is; what is it like to live with permanent Afib? I’m not well when I go out of rhythm now; breathless, tired, pounding in my head and it all gets worse if I walk about. I can’t imagine living with that 24/7. Does it settle down eventually? Will I be able to live a fairly normal life? Thanks in advance ……

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Crumble2 profile image
Crumble2
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10 Replies
10gingercats profile image
10gingercats

Permanent Afib can be so much easier to live with than the other types. I have had it for years.I do not know I am in Afib.I reverted back earlier in the years when meds began not to work. A long story.But then hospital docs. sorted it all out and now my Afib is silent once again. I traveled to India and China plus all over Europe and the Middle East with perm . Afib. No problems. I popped my pills daily and all was well.

BobD profile image
BobDVolunteer

So long as you are anticoagulated and your rate is well controlled permanent AF is often easier to endure. One must also understand that it doesn't always mean what you think . It merely means that you and your doctor agree that future attempts to obtain NSR are not to be made and that rate control is now your way forward.

Icenae profile image
Icenae in reply to BobD

Do you know How is permanent af defined. I had 3 ablations, have a pacemaker and if I am not tachycardia, I think I am being paced. Is that permanent af. It is more comfortable than it used to be. No more procedures planned.

BobD profile image
BobDVolunteer in reply to Icenae

As I explained above. If no further procedures are planned then you are permanent.

RoyM profile image
RoyM

I have lived with perm AF since 2016 and it is easier to live with. I take an anticoagulant and 1.25 g of Bisoporol daily. I agread with my EP in 2016 that NSR is the holy grail I will no longer chase. I am able to cycle, swim, I also walk (weather permitting) 5 miles a day. So yes, for me Permenent AF is much easier to live with. I am a 74 year old male, resting heart rate high 65/70 BMP. Regards Roy

Omniscient1 profile image
Omniscient1

I agree with the other posters, I have permanent AF and I think we get it easy in terms of trauma from what I can see of other posters who get it periodically. I am asymptomatic (Although my heart is doing the cha-cha-cha, unless a stethoscope or ECG is involved there is no clue - mine was diagnosed after a routine exam by my GP for something else). As the others have said the key is to keep up with your CHADS score and make sure you are on the appropriate medicines.

Singwell profile image
Singwell

Im still in paroxysmal AF, my brother in Persistent- he doesn’t notice it he says. The other day on my walk I got chatting with a guy in his mid 80. Told me he now gets it all the time, is happy and able to do everything he wants: swimming walking the dog, enjoying life. He looked 10 years younger. So, as others say, Permanent is not something to dread. But the problem right now is your episodes are more frequent and more symptomatic. I'd say this is the time to ask to see your cardiologist and discuss options to improve your quality of life. Perhaps change of meds, ablation or pace and ablate.

blulla1 profile image
blulla1

You could try this if you haven't already. carrafibdietinfo.com/

Crumble2 profile image
Crumble2

Thank you all so much for your replies! I feel much more relaxed about it now as I understand more about a possible future. Take care x

Fullofheart profile image
Fullofheart

I've had Af for 17 years, since my late 20s. Went persistent/ constant prob about 7 or 8 years ago, maybe more...to be honest I didn't really notice. A doctor picked up the change.I've only had significant issues last 2 years, probably (they think) brought on by covid. Prior to this I managed it without any medical intervention or meds and had a fit and active lifestyle, good diet etc. But its different for everyone of course.

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