New to Afib - how to describe symptoms? - Atrial Fibrillati...

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New to Afib - how to describe symptoms?

Rainfern profile image
23 Replies

Hello. I'm new to Afib (diagnosed Paroxysmal AF November) and new to the forum. It's wonderful to read all the support, care and information here - what a find! I'm awaiting a 7 day monitoring in Feb. Meanwhile doing my research and still have so many questions! Main symptoms at the moment are raised HR (around 85 resting) and tiring easily (breathless up steps), but also hypersensitivity to all kinds of off-beat sensations of the heart. I miss the dependability of my otherwise fit body and though walking every day, am thinking I may have to give up the vegetable allotment for time being. So, first question - does anyone have words that describe these odd rhythms and sensations associated with Afib? I experienced palpitations on and off many years ago and lived through the acute discomfort and terror of these. But some of these off-beat sensations are more subtle. Like sometimes a "clunk" or occasional flutter, but more often a kind of brief buzz or vibration. Sometimes like a small pebble has been dropped from a height, landing when I'm otherwise calm and relaxed. I believe we're all different, but maybe there's some common subjective symptoms out there?

Wishing everyone a positive and healing journey through 2023

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Rainfern
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23 Replies
BobD profile image
BobDVolunteer

Sounds to me as though your AF burden is extremely light and there will be countless people here would likely kill for it!

Most people have rates far higher, often in the 200+ range during events and many have pain and fainting also.

Firstly palpitations is just a term given when you are aware of your heart so it is not medical definition as such. One can be aware of ectopic (out of place) beats which often feel like a missed beat or extra heavy one. Atrial fibrillation is when the left atrium , instead of contracting in a regular fashion, writhes uncontrollably so is often described as "like a bag of worms" or "a box of frogs." I always felt that The Dave Brubeck quartet had started up in there with his strange 5/4 time rhythms.

One thing for sure, it is such a mongrel condition that we all experience it differently.

Rainfern profile image
Rainfern in reply toBobD

Thank you Bob. I do feel very lucky not to have those very rapid heartbeats this time around. After a hole in the heart op in my teens I experienced very rapid HR (palpitation) episodes for a few years and thought I was dying. I was afraid to tell people about it and later had it diagnosed as panic attacks and prescribed a beta blocker without even being given an ECG! In those days there was little or no research into the incidence of Afib following heart surgery, so I'm not sure what was really going on. Box of frogs is a great one, and I love your analogy of Dave Brubeck quartet in the chest!

pottypete1 profile image
pottypete1 in reply toBobD

I like the Dave Brubeck analogy BobD .

I as a car enthusiast you may might like mine which is my old Wolsley 4/44 only firing on 3 cylinders.

Pete

Gumbie_Cat profile image
Gumbie_Cat in reply topottypete1

I always describe it as ‘not firing on all cylinders’ - while only having the vaguest idea of engines at all!

BobD profile image
BobDVolunteer in reply topottypete1

Rev limiter fault.

Tommyboy21 profile image
Tommyboy21

Like Bob say's. I'd love to have your symptoms. Mines normally start with an involuntary sharp intake of breath then I get a dizzy woozy feeling in my head and rapid heart beat. Often around 170bpm. Strange crunchy feeling in chest. And sometimes a horrible cold clammy sweat. Normally lasting 18 hours or so. My triggers are varied.

Rainfern profile image
Rainfern

Hi Tommy and thank you. What you describe here is far more like the symptoms I used to get following the hole in heart surgery back in the 1960s. The rush, and the cold sweats, the crazy high HR. Who knows what was going on, and maybe I've had an undetected paroxysmal AF all these years. It was never checked out - guess I was just another neurotic woman in an "anxious state" back then! But the onset of recent symptoms 50 years down the line has been quite sudden, and my HR/BP/AF monitor seems to have settled into steady, ongoing AF for nearly a month, so just hoping it doesn't get worse.

Silky57 profile image
Silky57

Hello again Rainfern! I’ve had benign palpitations and ectopic beats for decades. Usually felt like a little pause followed by a big thud. Usually I’d have extra beats, but latterly few missed beats too. Feels like a rush of adrenaline (I recognise your pebble dropped from a height analogy) followed by a flutter which settled in seconds. Immediately after a bout of Covid in Oct, I knew something was different. Just walking at a normal pace made my heart race and thump like it was fighting its way out my chest (it reached 167 uphill). Didn’t feel ill, no breathlessness, dizziness or anything, just a wild beat. That occasion was my first, and only, AFib reading as flagged by my iwatch. Beta blockers have thankfully got it under control for now. I too am only at the start of my journey and it is daunting to think how much worse things might get. Hope you get some answers & a proper treatment plan in place in Feb.

Rainfern profile image
Rainfern in reply toSilky57

Thank you Silky, it's good to hear you've got it under control with the beta blockers. Sounds like you've really been through it - what bravehearts we all are on this forum! It will be good to keep in touch as time unfolds. Good luck!

Afibflipper profile image
Afibflipper

I think you’re doing perfectly well with your descriptions🙂

For years I said the flushes were menopause - when the Af paused I’d feel light headed then when it kicked back in I’d go blood red in the face, perspire and say “ wow never thought hot flushes would be like this” - menopause actually came later 😂

I’ve used everything from, bubbles n butterflies in my chest, to flip flopping, heart partying to a feeling of my chest being sucked out from the inside to the hulk trying to get out of my chest - maybe I should be in amateur dramatics?

All the best for 2023 x

Rainfern profile image
Rainfern in reply toAfibflipper

Thank you flipper! These descriptions are so helpful, I need to put in words what's going on while I'm having the 7 day monitor. "Bubbles n butterflies" is perfect, though have to say haven't encountered the hulk yet 😂Seems to me humour is an essential ingredient for getting through all this, so please keep up any amateur dramatic tendencies!

Afibflipper profile image
Afibflipper in reply toRainfern

Hi Rainfern, That’s good to hear, it’s good to laugh (even at yourself) when you can as it can be a beast (hulk) You’ll find great support here (they got me through my last ablation - it’s good that hearing others stories is so much more helpful than trawling the net). Hope the monitor gives good results and they get you sorted - all the best in 2023

Afibflipper profile image
Afibflipper in reply toRainfern

I tried to send a link for a video where doctor dances the arrhythmias to how the heart does it’s own thing - link wouldn’t copy so just Google doctors arrhythmia dance

You put into words the sensations I used to feel over years before my eventual diagnosis “Like sometimes a "clunk" or occasional flutter, but more often a kind of brief buzz or vibration.” ….especially the “buzz”.

Rainfern profile image
Rainfern in reply to

Thanks OldGrt. Good to know I'm not alone with the buzz and vibration!

Jaco53 profile image
Jaco53

usually my skips, missed beats or thuds are after food or when I need water. Once I’ve had a drink they go. If I sleep on my left side I wake up with ‘racy heart’ and adrenaline often following a nightmare. My ablation stopped my afib but I described mine as ‘drum and bass’! If you can get plenty of sleep walks and mineral water.

Rainfern profile image
Rainfern

So pleased to hear your afib disappeared after ablation Jaco - that gives me hope! It sounds like you've made some really positive lifestyle changes to get there. I'm trying to get my sleep pattern under control but it's hard being woken by those hyper‐alert signals. Think I'll try drum and base image to add a bit of humour and distance, thanks for that.

Fullofheart profile image
Fullofheart

Hello RainfernI'm loving all these descriptions that you've started off.

Would make great poetry.

I've had AF for 18 years, but been in persistent AF for a decade so I usually don't experience the "going in and out" " hokey cokey" of paroxysmal AF but this last year I've had 3 ablations and a few cardioversions so have been reintroduced to the clunk's and whooshes of the hokey cokey. I'd forgotten how intense it can feel.

Often people are worried about AF going persistent/ permanent...and fair enough, its certainly not an ideal state, but my experience is that the body learns to tolerate it. I'm back in AF now...ticking along at between 70 and 130 but averaging around 90 and it's just very soft background "noise" most of the time. It's a bit all over the shop currently as I'm only a week post ablation but the meds keep the HR down. Otherwise I'd defintely be higher, and would have far more symptoms.

The worst bit for me is the fatigue with a bit of dizziness and breathlessness but again you adjust. I still exercise and work full time, but I'm kinder to myself these days...when I remember!!

Rainfern profile image
Rainfern in reply toFullofheart

Fulloheart, I feel an anthology coming on! Hokey Cokey could make a good title!I like what you say about how the body learns to tolerate persistent/ permanent AF. Because although I'm only a month or two in this thing doesn't feel it's about to go away however much I may wish it. And whatever the road ahead I feel adjustment is going to be key.

Its brilliant you're still able to exercise and work full time! All best with your recovery.

Snowgirl65 profile image
Snowgirl65

Mine is like a squirrel running around inside my chest while wearing cement shoes.

Rainfern profile image
Rainfern in reply toSnowgirl65

Wow - that's quite an image. I can identify with that mix of light with heavy touch but think my squirrel is missing three of its shoes as it scratches about a good bit (the buzz or vibration) and the heavy beat is more intermittent. Thanks Snowgirl.

BlueINR profile image
BlueINR

My experience of afib was like a bird flapping its wings in my chest. I would be SOB and heartrate would be 140s or higher and BP would be low. That was my experience. Yours may be totally different.

CheriAlli23 profile image
CheriAlli23

I have been told that I have AFib and A flutter. Not sure I even get that frog jumping feeling or anything like that. What usually happens when I have an episode is quite different.

I have times when my heart feels swollen, a little sore (tender to touch that area).

When an episode occurs (if I move too fast) it’s usually with the feeling of tightness in my chest and palpitations as well as the feeling of blood rushing up the left side of my neck. At that point, I’ll feel dizzy and have to sit/lay down asap as I will feel extremely faint.

Later I will usually experience a bad headache.

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