Long time, no see - hope everyone is having a good day x
I have been a long time in permanent AF (roughly 12 years). I am 72 and I have had, in my time and previous to my permanent state, have had 2 cardioversions and 2 ablations (the non-freezing ones). All were successful but each time I went back into AF. At the time of my permanent state I was told by my GP that I ”couldn’t have another ablation” and that the focus would be on keeping my HR controlled via Bisoprolol 5mg per day.
All was reasonably stable until 2023 when I was getting really breathless on short walks - even more so on even slight inclines. My resting pulse at this time was averaging 96bpm. I had been discharged by my EP and had no contact with an AF nurse so reported the change to my GP. The result of which was a coronary angiogram and a stress echo - which was a good thing to do. However, nothing, apart from the AF still going along its merry way. It was suggested by my heart consultant that I lost some weight - I was and still am in the (obese - not morbidly obese bracket), I lost a stone and a half and felt a bit better.
Now, the breathlessness has returned and last week, walking outside I almost fainted twice. Had I not put my head right down, I would have gone for sure. Does anyone have any idea of what is going on here and what I should be expecting next from the medics? I want to walk about more but physically can’t. It’s frightening stuff so I want to do the best I can to improve whatever it is.
Thank you for reading this long post - if you have got this far, that is 😍
Froggy xx
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Froggy
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Hi mav7 - Thank you. My blood pressure is generally fine at around 130/80. Sometimes it will drop and at others it will raise, on the whole it is stable.
I have booked a telephone appointment with my GP for tomorrow.
Good question, don't recall reading anything much about when Permanent AF starts causing issues. What I have read over the years is that some people cope easily with Permanent with few symptoms, so I would take a couple of opinions - one on the NHS and one Private if funds allow.
Hi secondtry, thank you. I’ve not heard about any problems with PAF either so can’t base what I am physically feeling on anything. I just know that I am having problems and would love to get back to just walking normally and enjoying it. It appears that you get PAF, you are given a beta blocker to control rate then you are on your own - no regular check ups unless you bring issues up.
Wife was in permanent AF for 18 months and noticed she was getting increasingly breathless, especially on slopes. She mentioned this to AF nurse who arranged an echo cardiogram. EJection Fraction was low so she's been diagnosed as having heart failure, put on meds specifically for her HF, in addition to AF meds, and referred to HF clinic.
Hi DevonHubby1 - thank you. I had an echo in April 2023 where my EF was shown to be “low normal” and at 50%. An excercise stress echo shown an increase in tricuspid regurgitation and I was also advised (by letter) that I had an elevated NT pro-BNP. I also had raised pulmonary pressures. Again, I would have thought with that going on, monitoring at some level would be appropriate.
My story is similar but with some differences. AF was confirmed in 2010 and progressed steadily via persistent to permanent. Apart from beta blockers throughout and ever since, I have had no interventions - no ablations or cardioversions offered or given.
After a few years with occasional days of what I termed operating in third gear the faints started (undetected in ecg and Holter) that progressed to blackouts and I was given an Implanted Loop Recorder(2016). That identified heart stoppages varying from a few up to 14 seconds and I got a pacemaker PDQ.
I could then drive and cross the road without fear of fading out and life continues untouched and untroubled - still a bit slow and breathless but no more faints and I am now on my second pacemaker (they last 7-10 years) and looking forward to many more carefree years (now 82)
The condition is described by the British Heart Foundation as Cardiac Syncope ... see
Hi quanglewangle - thank you. So glad you got sorted and are functioning a lot better x Thanks for the link to BHF. I always understood that a pacemaker wasn’t much use in AF - maybe things have changed no though?
I’ve just joined site so hoping I’m not repeating myself on same thread. And like yourself I feel this a bit of an epic post.
Your symptoms are kind of similar to mine.
I had a 3rd ablation Aug 24 and cardioverted week later for bad AF. All well till weaned off flecainide and back in A&E January. No Cardioversion as resting ECG in NSR. However slight exertion and my heart would go into fast AF for 5mins with terrible breathlessness. Other than performing the CV while I’m running on the spot…..I was sent home with high dose of flecainide and newly added 2.5 bisoprolol. Cardiologist suggested I think about accepting AF and concentrate on rate drugs.
I tried betablocker away back 10 yrs ago when diagnosed and my life changed overnight. Pre planning journeys without stairs! Minimising every task to cope with breathlessness!! Luckily I was prescribed flecainide which I tolerated. Until couple of years ago and if I went into fast AF it wouldn’t revert without Cardioversion. Hence opting for 3rd ablation.
Anyhoo, present day….home 3wks and reduced flecainide as no adverse affects and I couldn’t function at all on high dose…my new resting heart rate is in the 90s, (pre ablation 60) so have to stick with bisoprolol.
I am exhausted and suffer chest pain, little jaw discomfort, fuzziness with exertion. Also heart goes into SLOW AF for 5 mins like it’s trying to reset. Very troubling.
I have managed some sense of normality, in past couple of weeks….20 min walk, grocery shop, eating out….with my husband. All taking bit of effort but actually felt better after each accomplishment.
Tried same on my own and really bad chest pain, jaw discomfort and real fuzziness like I would pass out.
Moral of the story. Are we suffering from stress/anxiety and it is causing ..very real symptoms! Why am I ok with someone beside me but not on my own.
I would take heart..pardon the pun…if you’ve had clear tests. Have you been stressed or changed diet, any infections. Could your weight gone up/down and meds need adjusting?
AF can progress so maybe a different combination of drugs required.
I remember way back I was on small dose of bisoprolol 2.5 with flecainide and my heart rate dropped to 40s. I reduced bisoprolol to 1.25 against doctors orders cos like you I was very close to passing out. Remained at comfortable 60 until 3rd ablation.
Is your resting heart rate ok at present. You mentioned 90s in past.
My apologies for long winded thread. And all about me. Trying to determine any other similarities that resonate with you.
Hi Keepcool and thank you for your response. We do have some similarities, certainly. Interesting you should mention anxiety as that crossed my mind too. However, if I am accompanied or not it’s the same. I do get concerned about going out on my own or with others and will try an assessment of the ‘terrain’ - is it on an incline, are there steps etc? It’s not much fun being on the flat all of the time 🙂
My resting pulse rate is around 96. Keep on doing what you are doing and keep well. x
My paroxysmal AF didn’t start until I was older than you at around 75, but I had to give up the regular long walks I used to take with a group of women friends because I developed chronic fatigue around the same time, both I believe the result of a nasty virus when I was unable to get an appointment at our surgery when an antiviral might have saved me from both!
Hi Vonnegut - thank you. What a shame! It’s awful having to give things up that we enjoy, isn’t it? We all must focus on what we can do and not what we can’t though, eh? Keep well x
My elderly friend (now 91) has had permanent AF for very many years with a typically normal rate and few obvious symptoms, except, like you, to become short of breath and especially on inclines, as well as very occasional fainting.
Do you have a sphygmomanometer to measure your blood pressure? It might be falling too low for comfort. Also, do you check your heart rate? It might go to slow at times and cause these symptoms. An Apple Watch or similar is a great way to keep an eye on this.
Hi Steve and thank you for your reply. Good to know about someone with AF being 91! What an inspiration 🙂 I check my BP when I feel something different is going on with me physically and at least once per week - pulse the same, together with O2 levels which are usually 98 or above. Resting pulse is about 96.
Well, there’s a surprise! I was diagnosed with Orthostatic Hypotension after some immediate BP checks - sit down/lie down/ stand up. My sitting/lying down BP was 120/75 but when I stood up it significantly dropped to 100/60. No wonder I was having issues!
My GP immediately stopped my Losartan and after 5 days I feel like a different person 😍. I have to get the BP tests repeated in 2 weeks and will discuss results after that but I have a feeling that losing the Losartan has done the trick - I hope so anyway!
Many thanks to all of you for your kind words, encouragement and advice - what a lovely bunch you are. Keep going all of you x
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