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What does it feel like

Dane8675309 profile image
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What does your atrial fibrillation feel like when you have an episode

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Dane8675309 profile image
Dane8675309
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51 Replies

At its worse like someone had taken my heart and they are bouncing round the room. Also had to regularly sit down no matter where as legs went and I thought I was about to pass out. Not like being unfit but breathless and legless for no reason. Pulse leaping all over the place from 40-200 and up and down in between. Scary but I'm living to tell the tale.

in reply to

Mine slightly different as I had benign tumour in my heart which was causing havoc with AF and other arrythmias. Had open heart surgery to remove it and also surgical ablation. Still had problems but now pacemaker and meds keep me in reasonable state. Back at gym too

rosyG profile image
rosyG

you're going to get an enormous range of answers here!! Even for one person, things vary a lot, My first episode was like a football match internally!1 I had all the symptoms of a heart attack except the pain. After that episodes were much milder but always very noticeable. I stopped caffeine straight away which I think reduced the football effect !! I always had a high heart rate- 160bpm

Dane8675309 profile image
Dane8675309

Thank you both. It's just interesting for a newbie to hear

Mazza23 profile image
Mazza23

I think it feels like a bag of worms wriggling around in my chest

pottypete1 profile image
pottypete1

Why do you ask.

It is a big question to answer. As you will realise when reading the threads us Abfibbers are all different.

Pete

Usually it feels like a sort of wobble, or as some describe it, a bag of worms. But I've also had what felt like a tiny muscle twitching almost under my left armpit, a bit like when your eye twitches and you can't stop it, that was confirmed as AF with a monitor (and I had an ablation because of it). At it's worst my ticker was doing a lot of jumping around like a rabbit trying to jump out of my chest and hitting the "roof".

Hellie54 profile image
Hellie54

I feel my heart pounding and going very fast. It's a panicky sort of feeling. When I try to walk I feel light headed and sometimes it literally takes me off my feet.

CDreamer profile image
CDreamer

A range of symptoms usually starting with just 'something is not right anxiety' soon followed by tachycardia then thumping feeling in my chest, sometimes but not always followed by breathlessness on exertion, followed by 'oh yes this is AF' followed by light headed feeling and waves of dizziness as BP starts fluctuating - then the distinct, irregular fast, fast, fast fast fast fast thump, pause - slow, slow - fast fast fast thump.

I recall my first two major attacks when I woke in the early hours. I thought i was about to die. My heart was pounding so fast and violently it felt like it would burst out of my chest. Rhythm all over the place. I don't know what the rate was but from subsequent episodes I suspect well over200 . It was a 999 call on each occasion and a few days on CCU and cardioversion. These both within 3 months.

A lot has happened in the 23 years since and I still get AF but nothing like the first episodes.

Sandra

BobD profile image
BobDVolunteer

I think the best description was from a member who no longer posts here who said it felt like two badly behaved teenagers having a pillow fight inside here chest, Oh and don't forget the pee for England bit either. Even if you can fight through the fatigue you still can't do owt as you can't go more than five minutes from a toilet.

bushy2016 profile image
bushy2016

I feel like Im running in the Grand National.....going fast....then a small pause (when I junping a fence) ....then fast again...oh a peeing like a race horse!!!!

R1100S1 profile image
R1100S1

In AFIB all the time

Don't notice the heat stuff but easily get exhausted and seem to be in training for a peeing frequency contest.

We are all different

Buffafly profile image
Buffafly

Like a butterfly trapped in my chest. I also used to get the 'mad bunny' effect but I think those were bursts of ectopics. I feel a bit weak and faint and if I try to carry on as normal I get chest pains. It is difficult to relax because the wobbly heart seems to set up a stress circuit.

jeanjeannie50 profile image
jeanjeannie50

Every one of my AF episodes has been different. To begin with the early ones lasted about 4-12 hours, they would lay me low for the rest of the week with extreme exhaustion. At times it felt like my heart was trying to get out of my chest and at those times I felt sure I would die. My attacks could last for months and were very disabling i.e. I couldn't walk far and got very breathless. They only ended at those times by my having a cardioversion.

The worst one was when I felt hot, dizzy, as though I were going to pass out and I had to struggle to keep conscious. My heart was beating so fast it wasn't registering in my wrist. Since yet another ablation last July I've been a lot better and Flecainide keeps my pulse down to 100ish when I have an attack, which is now about every 4-6 weeks for a few hours.

Jean

cuore profile image
cuore in reply tojeanjeannie50

Since I began persistent AF on Jan. 13/'17 and will be getting a cardioversion on April 13/'17, three months later, I was wondering how long you were in Af before the cardioversions and how many you had? My cardiologist was so negative and talked about the cardioversion not being successful. He also blabbed if the cardioversion is not successful, the the ablation won't be successful.

jeanjeannie50 profile image
jeanjeannie50 in reply tocuore

Hi - Sorry to hear you have been in AF all that time. How is it affecting you?

I've had lots of cardioversions and can't remember exactly how many, so will guess at least 8. I love them, you go in feeling awful with your heart racing and about 10 minutes later wake up cured! I'm on warfarin and need to have my INR measured weekly and phone the results in to my AF nurse for 4-5 weeks before they will do the procedure. By the time I realise that my heart isn't going to stop it's nonsense on it's own and then have the INR tests, a few months have generally passed.

What medication are you taking?

Jean

cuore profile image
cuore in reply tojeanjeannie50

When I was in paroxysmal AF I had a few excessive attacks. In persistent AF, I mainly have a heavy chest and lump in throat daily. I easily get out of breath walking up hills and sometimes lifting can be challenging. I generally do aquafit daily to keep symptoms down.

When, on September 27/'16, AF was diagnosed (after atrial flutter and metoprolol) my GP put me on Verapamil 120 mg., then increased it to 180 mg. on January 26/'17, "in the hopes that we'll get lucky" and I would return to sinus. I started on Rivaroxaban on March 8/'17 for the cardioversion this April 13. I had been on aspirin 81. I was not placed on any rhythm control drug for the cardioversion.

My cardiologist on March 7/'17 (first visit) was very negative and programmed me that I would not go back to sinus. Reading your comments has been most enlightening and reassuring that all will be fine. I thank you for lifting my spirits.

pros10 profile image
pros10

I believe I had it for over 2 years not knowing what was wrong apart from suddenly getting very tired and feeling terrible. Because it used to last for only 1 hr or so my doctor could not diagnose it. Once diagnosed and being on medication I started getting it in.my sleep and waking up all hrs if the night and lasting longer and longer, up to 36 hrs. I used to get it when upset sometimes but also when watching a movie on tv. Stress/ no stress ???? Just feeling terrible. I am on Flecainide now which has helped me for the last 4 months. Good luck.

When I had the experiences I would describe the sensations as one of the following three;

1 A bag of worms wriggling away in my chest,or

2 A mob of octupuses wriggling their tentacles like crazy, or

3 a squadron or more of butterflies fighting the Battle of Britain again - or fighting any bloody battle for that matter !

Like my chest is boiling... And sometimes like someone is trying to bang nails in in there as well... And agree with Bob, except I'm peeing for Wales, not England :D

Jonathan_C profile image
Jonathan_C

Thank you for starting this thread and thank you all for the responses! I enjoyed reading them. Mine ranges from feeling like in am in rhythm to the worms, octopuses, butterflies, naughty teenager pillow fights (I like to think its 19 year old swimwear models toiling in the surf). I quite often have a dull chest pain too.

BobD profile image
BobDVolunteer in reply toJonathan_C

Love your mind Jonathan! Hope nobody takes offence.

Emsysy profile image
Emsysy in reply toJonathan_C

I'd be more concerned about the dull chest pains than any of the other symptoms. You should have NO chest pains with AF apart possibly from angina, which I get sometimes when exercising.

Jonathan_C profile image
Jonathan_C in reply toEmsysy

Thank you. It is angina I get, but didn't know it (the description on the net of it as being like indigestion is just what it feels like). It always goes away if I breathe deeply and now I understand why.

teach2learn profile image
teach2learn

When in persistent AF before blessed ablation, it felt like I had a wild squirrel loose in my chest. Simply amazed me when I learned that some people can't feel theirs! I'll never forget the wide eyes of alarm when a nurse, checking my pulse, said "you're in tachycardia!" to which I smiled and replied, "yep, all the time. Welcome to my wild world". I guess she wasn't accustomed to hearing that kind of heart in an alert patient, sitting up.

Joberton profile image
Joberton

When i was permanently in AF i just felt run down and tired, walking up stairs would make me momentarily breathless as with any light exercise, i was in permanent AF for about 9 months got used to the condition. The medication (betablockers) helped slow my heart from from 100s to about 78bpm resting and reduced my symptoms dramatically although seemed to fatigue me more.

Since I've had my PAF ablation i get the occasional monthly/weekly fast heart rate, usually when i settle into bed but I always seems to be in sinus rhythm, I get ectopic beats sometimes also but only really notice them when I'm resting as my heart rate drops to mid 40s.

I used to get the fast rate and ectopics a lot in the first few weeks/months after ablation and a butterfly in the chest feeling but this seems to be settling down a bit now - 280 days since op. Anxiety prolonged the fast rate and sometimes i couldn't sleep but not fearing these symptoms is the key, Is definitely helps having the right mindset!

*edit* having read other peoples posts I also get the a falling sensation and sometimes i get a strange feeling in my throat like indigestion and this can be accompanied by ectopic beats and sometimes without. If I have a fast rate at night I always need a pee after when things settle down and during the fast rate I sometimes feel really hot.

Finvola profile image
Finvola

When an episode started I felt as if someone was violently squeezing my upper chest inwards with both hands for several seconds, then releasing the pressure. During the squeezes I couldn't breathe.

This continued until I could lie down on my right side, foetal position, when I could breathe again but had a bag of ferrets trying to slaughter each other inside my chest. Loo every 20 minutes to pass gallons and the squeezing started again until I could lie down.

I once put a sheet of paper on my chest to watch it bounce all over the place as it was battered by my heartbeat.

Pikaia profile image
Pikaia

Mine varies from breathlessness and pain in the chest to a sensation as if I'm the middle of a serious amount of sport with adrenaline pumping and heart going full pelt, yet all I'm actually doing is sitting down wondering what the Hell my heart is doing :)

checkmypulse profile image
checkmypulse

Lightheaded, very brief dizziness, only about a second or so, extremely tired, heavy eyes, tight throat, stupid little cough and the thumping chest. Then the joy of the switch being thrown and it going away (for a bit) was heaven.

Jonathan_C profile image
Jonathan_C in reply tocheckmypulse

I should have added the dizzy spells to mine too, but those are usually associated with dehydration (if I am well hydrated - on water - they don't come). I do however get bad dizziness if i go from sitting down to suddenly standing up and picking up something heavy.

in reply toJonathan_C

Me too

JaneFinn profile image
JaneFinn

Wow this is REALLY educational! Actually it's really reassuring to hear all these different experiences. Great thread idea, thanks Dane!

Dane8675309 profile image
Dane8675309

Thank you all so much for the replies. To be completely honest I am scared to pieces. I appreciate you all deeply.

Dane

pottypete1 profile image
pottypete1 in reply toDane8675309

Don't be scared you are in very good company.

I have endured AF coming and going for 26 years

Still here to tell the tale

Pete

Dane8675309 profile image
Dane8675309 in reply topottypete1

Amazing.

Walker1234 profile image
Walker1234 in reply toDane8675309

I was very scared only diagnosed in November..the cardiologist told me not to read anything on the internet...How wrong is he...the group really puts your mind at rest...it has mine

cuore profile image
cuore in reply toWalker1234

What a horrible thing for a cardiologist to say!

Bollox2AF profile image
Bollox2AF

Mr Duracell...that's me...I'm going like a battery...chest thumping, legs shakin,ectopics,flutter,lying down makes it worse,then pee'n like a Brewers hoss..wonderful!

123Abc123 profile image
123Abc123

My symptoms tend to be 'just' the fast and hard heartbeat which I feel in my chest and my ear and which at the moment is at least half the time. I don't sleep as well as I used to.

Dane8675309 profile image
Dane8675309 in reply to123Abc123

Does your fast beat feel regular ?

123Abc123 profile image
123Abc123 in reply toDane8675309

Yes, if I try to take my pulse it's always around 20 irregular beats but it feels consistent. My Dr said I wouldn't feel all the beats just by taking my pulse and that appears to be true. At gym my heartbeat readings can be all over the place if I am in AF but it feels consistently bad!

Dane8675309 profile image
Dane8675309 in reply to123Abc123

I'm just trying to get a grip on what I'm feeling and if indeed it is A Fib

I don't feel any significant pauses and my heart rate isn't too high

Dane8675309 profile image
Dane8675309

I would definetly suggest an ekg to see what rhythm he is in

I'm no pro by any means however I've read when the atria is extra busy ( atrial fibrillation ) it causes frequent urination

NannyChickens profile image
NannyChickens

Mine feels like the sort of butterflies you get when you have a near miss in the car or similar

Deadwoodmike profile image
Deadwoodmike

It would seem to skip beats, and then beat faster to make up for the beats it missed. There have been times when I thought it felt like my heart was a frog flipping around inside my chest.

lyssa252000 profile image
lyssa252000

It ranges from pains, to worms, to my heart feeling like it is going to jump out of my chest. The shortness of breath, weakness, not being able to walk, stomach pain. I think I may be just starting the extreme fatigue portion of it.

Dane8675309 profile image
Dane8675309 in reply tolyssa252000

Can you explain the worm sensation. I've read that a lot

engineer51 profile image
engineer51

inside mine felt like a guitarist who got a set of drums instead of a guitar and ended up a very irritable bad and out of sinq drummer .I think he /she was and still is sometimes very anoid..

Dane8675309 profile image
Dane8675309 in reply toengineer51

Made me lol.

wendy6 profile image
wendy6

For me like all the cast of strictly come dancing doing all the different dances in my heart at once ! Lasting on average 2 hours. Every 6 weeks to start with then it got to every other day. Had ablation 14 months ago fiber until recently now getting short mild episodes again Monitoring them.

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