Although after suffering for four years I am not clear on how AF affects people. We are all different so I do not expect a "one size fits all" answer. I have had a pace and ablate and even before that never felt the AF as a physical feeling. The only symptom I have ever had has been severe shortness of breath which as soon as I move I gasp for breath and this has now kept me house bound. I see reports of people being able to walk distances, cycle etc whilst they suffer AF . My EP says my breathing difficulties is because my rhythm is chaotic despite the Pace and Ablate. Can anyone throw more clarity as I feel like someone trying to find my way through a thick fog. Maybe I don`t have the intelligence required to understand the same as others do!
How AF affects you.: Although after... - Atrial Fibrillati...
How AF affects you.
Morning Cali111
I know exactly where you're coming from and how envious you must feel of others whose AF is not as debilitating as yours. No, it's not you making a fuss over nothing about the way you feel, so get that idea right out of your head now.
AF can present itself very differently to each person and everyone thinks it's only as bad as their worst attack. There is no one description of this hateful condition that fits us all.
There are so many ways the heart can malfunction. Whether it's increasing or decreasing beats and by how many. How the chambers are opening and closing, where the little pulses that make the heart beat are coming from and how strong they are etc. So you see that's why we all experience AF very differently.
Some people have no symptoms whatsoever and are totally unaware that they have anything wrong at all, others like yourself have shortness of breath. I had this too along with extreme fatigue, could hardly walk from the kitchen to the lounge - I thought that was AF, but then discovered I also had an under-active thyroid, once that was controlled life got better. So many people put everything down to AF when they don't realise that they have other underlying health problems.
You certainly don't lack intelligence, the condition is a minefield and even the expert EP's don't understand everything and are yet to come up with a natural harmless solution or find the cause.
So those people with AF who are out riding bikes, well their hearts are functioning/beating in a different manner to yours. Don't beat yourself up because you feel the way you do and let's hope your next ablation really helps.
Jean
Thank you so much for that. I cannot say I had no information and the EP tried to explain but as he said the way the heart beats is a complex thing. Other than my anti coagulant I only take Nebivolol (this when balanced does help!) which I recently reduced from 10mg to 7.5mg as my BP went too low and 20mg of Co-Amilofruse to cope with fluids . I did have my thyroid tested but was in normal but I struggle with my weight due to having no gall bladder. The best I can say is that my surgery is finally working hard to help me, so lockdown was good as before they did not have time to listen, now they do.
I hope things work out for you too.
"I did have my thyroid tested but was in normal"
Don't just take normal as a result, ask for the test results with ranges.
Mine was "normal" for a few years while I felt very unwell.
When I needed an operation the anaesthetist said I'd have to start thyroxine or I couldn't have an anaesthetic.!
Now I always ask for test results..
Me too baba, I was told my thyroid result was normal when it wasn't, cali111 find out what your result was and put it here.
09-Jan-2020
Serum TSH level - (SP) - B.Normal-Tell Patient
2.83
mu/L
0.30 - 4.20mu/L
These are a copy of my last Thyroid test.
Yes, that looks ok, not that I'm expert. It's annoying that GP's only test our TSH level. the ladies on the Health Unlocked Thyroid UK site will tell you a lot more tests are required. doctors won't do these, so it means having a private test which I believe costs £60-100. I keep thinking of having it done myself.
Hi cali111,
Just a thought, because everyone is different.... Have you had your breathing and oxygen levels checked out? I ask because I had a pacemaker fitted and although everything appeared to be working properly, I too had severe problems walking even short distances and we were all "stumped" as to why. My EP suggested an investigation (I went to Royal Brompton, hopefully there is a hospital near you that are experts in lungs who can do the same).
It was found that due to the prolonged length of time (years) I had been deteriorating health due to my heart, I was no longer breathing properly and I was actually becoming hunched and "squashing" my own lungs. Sounds dreadful I know.... Because I wasn't breathing properly, I had too much oxygen in my blood stream. Although it sounds strange you need a certain amount of C02 to function properly. The happy and easy solution was breathing exercises, shoulder/back posture exercises and this cured my issues - no added medicines at all which was a bonus! I hope this is of help cali111
Yes i do find controlling my breathing does help. When I was a child I caught viral pneumonia with rheumatic fever and was in hospital for 11months, they gave me exercises to make my lungs work. I didnot recover from this for 12years after but it did damage my heart at that time so maybe this is why I developed AF. The problem I face is by the time I have remembered everything they advise I have forgotten what they started with!
I know only too well cali111 and empathize with you. When you start to go on a journey of not feeling well, one thing leads to another and its easy to loose sight of what triggered and caused the next thing..... it takes a lot of time, often, to start to work these things out.
Really hope you get a better solution to how you currently feel cali111.
Mickey16
Hi Cali111
I have been in permanent AF for long time without big problems.
All trials to restore NSR failed,included
3 ablations.
This year the symptons became more
distressing : no shortness of breadth,
but tiredness, some dizzy spells,heavy
legs,twitching,etc.
Anxiety for me is a trigger that make
my Afib worse.
Every one react in different way to Afib
that sometime is a difficult condition.
Exercise for me is the main tool against
Afib,beside medicines.
Every day I walk for 6/7 Km ( or 10.000
steps) and after that I feel better.
Been on rate control med,my HR even
under stress of effort,stays below
105.
Good luck to you.
I think from what you have said before that you have a different/extra problem besides AF. I am in AF at this moment and although I can feel the odd quiver and bump in my chest the main sensation is of being on the wrong fuel! So slight breathlessness and dizziness getting worse if I exert myself at all. I know others have more extreme symptoms while others - annoyingly - can cycle and run! I have tried (not nearly hard enough) to get fitter so I can cope better with episodes. One thing I have found is that I have to be careful not to ‘over breathe’ as in too much in and not enough out! As Mickey says this is likely to make you feel worse especially as I naturally have very good SATS. My father, who had very bad lung function, taught me the trick of breathing slowly and deeply in and then blowing out through tightly pursed lips, stops you panting! I posted a link to instructions for ‘square breathing’ recently which is another good exercise.
Probably none of this will help you as you have a rare condition, but I find it helps to feel in control. I wonder if you might find more info on the BHF website?
Best wishes 💜
I do use what you describe it helps when I end up gasping especially if I am out (not often) and feel myself panicking it helps me cope. I must admit I no longer go out if I can help it. I do exercise and do my housework because if I stop I would not be able to go on. I cannot find the motivation to gasp by going out so I leave things that I know will make me try, like sorting and taking out the recycling, cooking from scratch, hanging the washing you get the idea. I have to be like a military campaign. I try not to give in to it but I know I sometimes get low.
Thank you for all the support I get here.
Hi Cali111
My main symptoms like you is shortness of breath, although less severe when upright so walking isn't too much of a problem. The recent heat however really did affect my breathing, I thought it was going to be a trip to the A&E, thankfully its cooled down now. Due to Covid 19 my tests and treatment are on hold, just had a recent telephone consult, but my heart rate is generally slow but due to the AFib its often difficult to get an accurate reading on my heart rate monitor, the graph looks like a spider has crawled across the screen. Hope you get sorted soon.
This what baffles me. I can sit in comfort and even lie flat, but the minute i get on my feet and walk I have to stop after about 10-20 steps due to being unable to breath or move my muscles. It is so embarrassing when I go from my car to get a trolley to shop and have to stop abruptly to catch my breath. When I finally get back home my son unloads my car and i stagger in sit on the chair/settee and drift off until I feel better and then put my shopping away in stages of 3-4 cans until I am finished. Finished in more ways than one as I am useless for the rest of the day, sometimes unable to cook and send for a take away delivery. After 4 years of this I am really fed up!
Over the last 6 years my PAF has given me all sorts of debilitating symptoms.
For the majority of those years when it's happened, when it hit I couldn't even put my own shoes on or climb stairs without feeling I was going to pass out. Most episodes were so bad I required A&E and a DC or chemical cardioversion - I have now had 22 of these - to get me back in NSR.
It was only really January 2019, after the 5th ablation (for flutter and fast AF) before the episodes became less frequent and less debilitating. I've had three Episodes since then, spring 2019, autumn 2019 and March 2020 at the onset of Covid. Each lasted 24-30 hours and I restarted medication during - I was able to get about the house and do things that I wouldn't have been able to before, but I probably wouldn't have been able to go to work etc.
I feel for you it sounds awful! I hope they can help you further when you go back to your consultant.
Take care.
Pace and Ablate 
Pacemaker for AF
The return of AF
Pace and ablate for atrial tachycardia?
pace and ablate
