Persistent AF/Exhaustion

[Woodentopbox]

I am acting for my wife who has had AF for a number of years. Her episodes were on 3 to 4 days duration in which time she would be totally exhausted, being unable to function. Just getting to the bathroom would be an extreme effort. Her last AF episode has lasted nearly 4 weeks with the effects being as above. Using a blood pressure monitor which shows when the heart rhythm is unstable it also shows some unusually low systolic readings and unusually high pulse rate. She takes sotalol and when in sinus rhythm her pulse is often under 50 bpm. Her pulse at all times is also hard to detect. My question, is it normal when in AF for it to be so totally disabling? and as she seems now to be entering into persistent AF what seems to be the most effective options? Lastly should home blood pressure monitors be used when in AF?

[10gingercats]

You received lots of excellent advice when you posted 26 days ago.If your wife is still suffering she needs to see a GP or cardiologist.....and if she is so very badly incapacitated maybe you/she needs to go to A and E.They will do an ECG and take blood samples and possibly call a cardiologist to see her.

[mav7]

As 10gingercats mentions above, you definitely need to consult a medical professional about your wife's symptoms.

Most important, insure she is taking an anticoagulant to help prevent stroke.

To answer your question, No, afib should not be that debillitating if controlled with proper medication and treatment.

It is good to monitor afib with a home monitor. Many on the forum use the Kardia. I am not familiar with the Kardia, others may opine.

If you are using a regular cuff monitor it is difficult to get an accurate reading. You may google for info on how to get the best reading.

Best to you in managing your wife's health.

[CDreamer]

I did find AF that disabling - but I refused to put up with it. Get an urgent referral to a specialist cardiologist to discuss treatments.

After the gamut of available treatments I am now AF free 95% of the time, only when I have infections do I suffer.

Best wishes.

[Jan1559 in reply to CDreamer]

what cured your AF please

[CDreamer in reply to Jan1559]

It’s controlled, not cured. Pacemaker.

[TheJazzSinger132 in reply to CDreamer]

How did you become AF Free? I'd take 95% any day.

[secondtry]

Agree with others, private cardiologist appointment asap.

[ObiDyer]

Can only sympathise with your wife as I was in persistent AF for 6mths while trying to control the AF with various medication, none of which worked other than to keep the heart rate down pending CV in August which was successful (so far!). But for the 6mths I was utterly flattened.. Reading comments on here about people doing marathons etc with AF was dispiriting (pleased for them but..), just goes to show the variability of how our response to AF, the medication and the treatment can be.

[ObiDyer in reply to ObiDyer]

PS while in AF my doctor asked about my blood pressure during a phone consultation. I took readings while he waited on my Omron tester which were plainly nonsense! He said automated bp systems don't respond well to AF and asked me to visit where he took manual readings (stethoscope and manual pump/relief valve) which proved to be OK. However.. beware auto BP during AF!!

[Ossie7]

hello , I am a 57 year old lady and 5 days ago had my 3rd electrical cardioversion for persistent AF . I too felt totally disabled by my last 7 week episode . I was advised to take 7.5mgs bisoprol which made me feel terrible anyway , plus I was on a blood thinner . This was advised by the cardiologist over the phone , as I had been to a and e for a hideous 13 hour stint where they represcribed blood thinners but did nothing else and I didn’t even get to see a cardiologist .This 7 week stint was the worst episode ever and I literally thought I would die ( constant palpitations , chest pain , winded sensation , SOB on minimal exertion ). My rate and rhythm was totally unstable even on the 7.5 mgs bisoprolol .

So I totally empathise with your wife and advise you to see a cardiologist as soon as possible , but I understand that in the UK that is not easy at all

Good news is I was converted back to sinus in 1 shock and I am now working on keeping it there . Back on dronedarone and just 2.5 mgs bisoprolol .

Fingers and toes crossed !

[MummyLuv]

Yes it can be. I was shattered by afib and couldn’t walk a flight of stairs without stopping to catch my breath. Research mini maze or hybrid maze for persistent afib. It has a good success rate when other treatments have not worked. I’m not sure where you live as not available everywhere but if it is it’s worth following up. I was 5 years in persistent, had a catheter ablation and 4 cardioversion, EP told me I was not capable of NSR. Here I am 5 months after mini maze and still holding NSR. 🤞🤞

[Ossie7 in reply to MummyLuv]

where did you get this procedure done ? Was it in the UK ? Just interested as I’m on W/L for ablation no 3 and , without being too pessimistic I may be going down that route myself !

[Woodentopbox in reply to Ossie7]

My wife was referred to cardiologist and this was arranged with a follow up in November with the cardiologist to find out the results. It seems that when you find out about echocardiogram on the internet the results should be hugely comprehensive on the function of the heart.

[MummyLuv in reply to Ossie7]

yes in the UK. My surgeon works out of Sheffield on nhs and London privately

[Buffafly]

Last time you posted many replies suggested you should get medical help asap for your wife. I am wondering why you haven’t done it, or whether you have and didn’t get effective treatment. Sometimes we have to be very persistent to get doctors to take notice of AF symptoms. The most effective relief for persistent AF is a cardioversion which is not going to happen if you don’t take your wife to see a doctor. This forum is not a replacement for proper medical advice!

[4Pip]

yes I have found a fib is totally disabling when I get it Eventually I had to change doctors and cardiologists and it’s taken 10 months for me to feel better after 3 ablations. Some doctors just don’t get A F which leads you to think there’s something wrong with you and depression. Make sure you get a doctor who is engaged with your wife’s care

[Ossie7 in reply to 4Pip]

just read your reply 4Pip re: having 3 ablations and that gives me hope that ablation no3 may work . I’m currently being held in sinus rhythm post cardio version but on dronedarone and very low dose bisoprolol (2.5 mgs)

Thanks for giving me hope !

[Jpot34]

Meds, cardioversion, and ablation rarely work or stop working. A mini-maze is your only real shot to be cured. Good luck!