I think I had a visit from my butterflies - AF Association

AF Association

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I think I had a visit from my butterflies

carneuny
carneuny

Hi guys and gals,

Well, don't often write updates 'cos there has been nothing to update. Until now or rather late yesterday afternoon when I had a heart 'n head issue.

Felt odd stuff in my chest like my butterflies were back locked in dog fights all over the place. Hard work breathing normally. A cross between palpitations and heart flutters, but, followed by a weird feeling around the top of the head.

Imagine wearing a hat and feeling it sitting around the top of the head gripping your head just under the hairline. Except this gripping feeling seemed to be inside the head. No adverse side effects, no vision, balance, coordination or other issues but in the early hours my digestive system rebelled and I ended up in the bathroom. Now all I feel is a heaviness around the eyes.

Oh yeah, my handheld ECG device gave results like, short beats and /or irregular beats! while all this jazz was going on.

Hey ho, I guess a phone consultation is the go 😂😂

John

18 Replies
oldestnewest

Sorry to hear your are having a jazz band playing in your chest plus head and digestive overtures too. Isn’t it alarming and frustrating not to mention draining and disappointing. Here’s hoping things settle quickly and you can get some helpful response from your medics, best wishes.

carneuny
carneuny in reply to meadfoot

Hiya Meadfoot,

Must say response from my local surgery was excellent, a long phone consultation, questions and answers and discussion as a result I am off for an urgent ECG in half hour. I have a handheld ECG device and when it chucked a wobbly yesterday I managed to catch quite a bit of data on my device. Images didn't look like I was the Mona Lisa. 😂

John

meadfoot
meadfoot in reply to carneuny

Good luck at your app, quick service for you, hurray.

Yes hope it settles down for you please keep us updated

carneuny
carneuny in reply to Padayn01

Hi Padayn01

Thanks for that - just made a comment to Meadfoot which will bring you up to date. Forgotten what this was like. My last one was February 2018, and before that, April 2015 😮

TamlaMotown
TamlaMotown in reply to carneuny

Hi Carneuny, I also had a visit from the dreaded 👹 at the weekend. My second round since diagnosis in April 2018.

Luckily it resolved itself after about an hour & a half but still a shock to the system after 27 months.

Hope your feeling back to normal soon John x

carneuny
carneuny in reply to Kaz747

Hiya Kaz,

Thanks for that. I feel that I've just walked away from a train wreck, but, gradually improving. However, GP has told me no work for a few day ( I drive buses) and I'm quite happy with that. for the first time ever I've entered the world of pill in the pocket. When my diagnosis was first made over 10 years ago I was prescribed my party bag of drugs on the basis of a set dose at a set time of day. The key is my Bisoprolol 5 mg daily at night. My GP, bless her, is now starting me on 2.5 mg, to be taken as and when required as a PIP. I'm kool with that but its a first time for me in the world of PIP's.

I have to admit, these events are occurring with greater frequency, never full blown AF but more like palpitations converting into flutters. to be honest, I see a linear progression in my case, goes, something like this ..........a state of being - normal, then, digestive issues, palpitations, (responding to digestive issues), flutters and full blown AF. This time I got as far as flutters.

I describe it, like - squadrons of butterflies in a dog fight in my chest = flutters AND a bag of wriggly worms in my chest = full blown AF !

Hey, I hope you are well and that after your AF experiences and treatment you are now fit and well. Also, hope all you guys in W.A. are dodging this CoVid19 stuff, unlike the poor people in the Eastern States. I'm following it all on FB via video links with ABC and Sydney Morning Herald. What a mess eh?

Thanks for your enquiry Kaz, stay well.

John x

Kaz747
Kaz747 in reply to carneuny

Thanks John

We can never fully relax and feel “normal”. I am generally very good (I’m on a small dose of beta blockers daily) but any pressure on my body - illness or injury- and I get tachycardia and funny runs.

We are doing well in Western Australia. We have 6 confirmed active Covid cases, all returned travellers in hotel quarantine. I went to a business breakfast on Tuesday (with 950 people) which our Premier spoke at. He is holding tight on keeping our borders closed and he has a 89% approval rating- unheard of for a politician here. Life is getting close to normal but we know it could turn quickly if we aren’t vigilant. Victoria is a mess and cases in New South Wales are ramping up too.

Sorry to read this carneuny - it is so disappointing to have any sort of reminder of 'it'. I always had gut upsets with AF but I wonder which came first and if your misery started with an upset digestion?

It's good to hear that your surgery is on the ball. Let us know how you get on.

carneuny
carneuny in reply to Finvola

Hiya Finvola,

Thanks for your post. Y'know, absolutely gut again this time. For several days prior to this particular event I had the most amazing bouts of burping, very strong, very loud and each burp seemed to last longer than I can remember a burp in the past ...... a million light years beyond a hiccup 😂😂

Then it hit ... several squadrons of butterflies in a dog fight in my chest ! - y'know, it just never ceases to amaze me how violent, these events are ......... like a mob of thugs mugging me inside. Then started the frequent visits to the bathroom .....constantly peeing for England and diahorrea too. after all these years this mongrel never ceases to amaze me - and what really annoys me is I cannot pin this down to any particular food, but I am suspecting ingredients, maybe in gravy or sauces - am thinking of a prawn cocktail I had as a starter with a meal out last Thursday evening. It all started after that, very, very gradually then more intense as each day went on.

Luckily, I had access to my handheld ECG device and was able to get quite a few takes on this event to give to my GP. Have had a surgery based ECG but nothing, all clear. But that was about 18 hours after the event. 😒 2.5 mg Bisoprolol has been prescribed as a PIP when the next event occurs and now wait for a Holter monitor then for an ECHO.

Ooooh! just thought about something as I write, the prawn cocktail was nestled in a base of lettuce. And I had most of the lettuce. Usually, I do not EVER eat lettuce, goes back to my digestive problems over the decades. I like lettuce - just cannot process it.

Anyway Finvola, thats the update. More updates to come.

John

Finvola
Finvola in reply to carneuny

It might have been gut trouble which started the whole thing - but it’s so much a ‘chicken and egg’ situation that it’s hard to tell. I hope it was the prawn cocktail which was the trigger and that it will be plain sailing from here for you. Let us know how things go.

Sorry to hear this. How did you get on with your ECG? Jean

Hiya Jean.

Thanks for your enquiry Jean. Saw GP with ECG results taken in the surgery and it was clear, no sign of A flutter or Afib ....... but no surprise there then because it was some 18 hours after the event. She has now prescribed me 2.5mg of Bisoprolol to be taken as I feel it come on in future, a PIP method. I'm being lined up now with a Holter Monitor and also for an ECHO. The ECHO will be interesting, the last one I had was at the time I was hospitalised at East Surrey Hospital in Reigate over 10 years ago. Be interesting to see what - if any - physical changes to the heart have occurred in that time, particularly the left Atria. I still have my Consultants write up from those far off days including a detailed reference to this part of the heart.

My GP is a young woman - early to mid 30's I guess and quite academic in her approach. If it isn't documented and proven then it doesn't exist. Not ideal, the world is full of colours apart from black and white, and as you know AF is far from black and white. She was at one time, also very sceptical about patients monitoring their own health with tech devices, like my handheld ECG device. So, I deal with her on the basis of giving her indisputable facts and when this hit me the other day I was able to get a few snap shots at different times on my ECG device and I gave them to her. Yeah so all this techy stuff isn't ideal, its not perfect and not in the same league as a surgery is equipped with, but, as in my case, its better than nothing. It'll be interesting to see what she has to say.

So, hey ho, a few days off work. Hope you are keeping well, stay that way eh?

John

At least your GP is getting things checked. I'm quite surprised at all she's arranging for you after just one visit. Lets hope your event was just a one off.

I took a friend out yesterday, she's just 4 weeks past a hip replacement, have known her for quite a few years and she knows about my AF. She just casually mentioned in conversation that coffee has started to make her heart race. I felt alarmed, but did my best not to show it and said very little. Will ask her at a later date if she's had it again.

I've been in constant AF since last November and am under the care of an AF nurse who's trying via medication to make my pulse more stable. I had two cardioversions last year and many previous to that, she has now said no more.

Make sure you report back on what your tests show.

Jean

Jean,

She (my GP) and I and the INR nurse are involved more as a result of my out of range INR readings a week or two ago. Plus, I have hit them with a formal request to not just self test my INR but to self manage my Warfarin. It's a slow process 🙂 so I think she is showing more interest in my issues anyway. Unfortunately, although I hate to admit it but these weird events seem to be occurring more frequently.

The linear process seems to be.....feeling normal, then digestive issues, then palpitations then flutters then full blown AF. Hmmmmmm! This time I feel I got to flutters 🙁

As another issue. My INR's are now comfortably and regularly in range following my posts a week or two ago. However my GP did gently suggest I might try these NOAC's. I said no way I'll stay with Warfarin . I also said I don't believe in chopping and changing drugs without a compelling scientific or medical reason for doing so. I added that I don't think I 've got to that point yet. So the matter has dropped, for now at least.

I hope yours and your friends issues get the prompt attention I am getting at the moment. Anyway Jean I'll update in a while.

John

Just speculating, but could this basically have been a digestive problem which triggered a bit of AF or similar? It’s good that you will have have an echo; it takes a while to get the result though- I’m still waiting for mine after two weeks.

carneuny
carneuny in reply to Samazeuilh

Absolutely! Thing is I feel I am on hiding to nothing as whenever it happens it always seems to manifest itself slightly differently every time. Like it's playing tricky games with me.😂😂

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