Your experience of af please: I would be... - AF Association

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Your experience of af please

Gowers
Gowers
42 Replies

I would be interested to know how the start of af affects you in those first few minutes ? like many others who have commentated on this site it often comes out of the blue. For me my chest/tummy start to feel hot followed by needing to take deep breaths. Once the racing af kicks in it is v hard not to feel a sense of anxiety & fear as to when it will end/will I end up in A&E etc. Despite trying meditation, relaxing techniques etc.

Having the radio on helps but it is s.times diff to even think straight. Regular trips to the loo, feeling sick, and non stop shaking and feeling washed out the nxt day or two tends to be my pattern. I wonder what has helped you get through af episodes? And how it affects you?

I am on Bisoporol but cardiologist wants me to start Adizem SR 180 once a day

42 Replies
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carneuny

G'day Gowers,

I was diagnosed on 6 Jan 2010 with paroxysmal AF.

For me the first few minutes when I realised something was wrong was very much like having the symptoms of going down with flu ! It occurred at around 5.30 am when I was getting up to get ready for breakfast and going to work.

Didn't make it to work due to 10 inches of snow blocking main roads.

Stayed at home and got on with some household chores ... spent 20 minutes or so sitting in an armchair, bent over a shredder shredding personal papers.

After this, when I got up I felt really ill like worsening flu.

Decided to check blood pressure for which I was being medicated with Ramipril (10 mg daily ), initially gave a reading of around 136/90... fairly normal at the time. By 9.30am ish I was feeling worse still and then checked BP and noticed it began to get lower. During the day it got lower and lower bottoming out at around 80/50 by which time I rang my GP and he agreed to see me ..... checked me over and rang hospital and got me admitted immediately.

Long story short, within 9 hours of starting BP checks I was admitted to hospital and within 12 hours I had been diagnosed with paroxysmal AF and treatment started.

Over the months ahead I was to identify the onset of AF events with food I'd eaten.

So you see, in my case, I had none of the symptoms that you describe. Mind you in his letter to my GP when my Cardio Consultant discharged me from hospital he did comment that I could be in AF and not know it ........ in other words I was asymptomatic.

Again, in the months ahead I spent a lot of time soul searching .... asking questions like, hey what the hell! why me! I've led a pretty healthy life, not perfect but not bad either, stopped smoking way back when in 1985. But then I began to identify digestive issues going back to when I was in my late 20's and early 30's. One feature that did emerge was recognising palpitations, which I'd had for some 2 and half years on and off prior to AF hitting me.

It was back in 2010 that ( on the old AF Association Forum (now defunct) when it was run by Yahoo) that I met online BobD and MarkS and learned heaps from them which encouraged me to learn as much as I could about AF. This learning process continues today - if you keep an open mind and sift through the posts of others misfortunes there is usually always a tiny gem to pick up that strikes a chord.

Hope that helps, apologies for the length of my response.

John

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Gowers
Gowers
in reply to carneuny

Thank you. Very interesting to read your experiences

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secondtry

I immediately notice the panicky feeling of the irregular heartbeat starting, depending where I am I focus on walking slowly but purposely thinking about every step until I get to where I can lie on a sofa and listen to slow heart beat on YouTube on my iPad, again focussed on every beat with eyes closed. It has worked twice within minutes due, I believe, to my AF being vagally mediated i.e. a over sensitive Vagus Nerve, which can be a trigger but also likely that you can revert back easier as well. Good luck.

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Gowers
Gowers
in reply to secondtry

Yes, I have been told it can be linked to vagus nerve. Thank you for reply will take a look at slow heart beat yoy mention

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For me, it's a pause and panic type feeling.... like when you catch your breath and freeze for a few seconds (think like a reaction to jumping into a cold body of water)

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smn100

I cant feel a thing. I was in af for months before i found out. Rate now controlled with meds but rhythm sounds like a kid on the drums lol I only found out because I went into heart failure

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Gowers
Gowers
in reply to smn100

Can't imagine not knowing about it but, know that's how it is for a lit of folk. What med's have you been prescribed?

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smn100
smn100
in reply to Gowers

I take a lovely cocktail of Bisoprolol. Adizem XL Digoxin Ramipril and Rivaroxaban

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Gowers
Gowers
in reply to smn100

Is Adizem another form of Diltiazem medication? Or a rhythm control drug?

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oyster
oyster
in reply to Gowers

Adizem is a brand name for diltiazem, which is a rate control medication.

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smn100
smn100
in reply to Gowers

No I don't take any rhythm control drugs. The rhythm is all over the place lol but it's manageable

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Brizzy5000

When I had AF it was dread, my first thought was how long is it going to last this time, hours, days in the end AF lasted days at a time, trips to the hospital, overnight stays but that is a thing of the past after my ablation last May, other than some eptopics I've been fine.

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Gowers
Gowers
in reply to Brizzy5000

I know that feeling - although it must be awful for it to last so long as in your case. (hours for me )

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Hidden
Hidden

Mine wake me up in the night usually around 1am, i feel faint and sick and need the toilet usually diarrhea and pee loads, on the journey back to bed i almost pass out. My bp is up in the 200's and my heart rate is 220's. My episodes are so bad i have to call an ambulance, doctors in resus always tell me not to sit it out but to get in to hospital ASAP.

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Gowers
Gowers
in reply to Hidden

Yes, I have been told to get to A&E if necessary - my symptoms have been similar in parts yours. The sick feeling is awful - (due to the vagus nerve my cardiologist says.) What treatment are you usually given in A&E please? What med's you on? Thank you for reply

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Hidden
Hidden
in reply to Gowers

My regular meds are, edoxaban, omeprazole, doxazosin, Diltiazem.

When i go to a&e they give me intravenous bisoprolol very high dose which has worked 6 times now. But i can't take any beta blockers on a daily basis side effects are awful.

The drugs I am on are for my very high blood pressure and i have a dilated Aorta so i have to be careful of that, the AF can put too much strain on it. But I haven't had an episode of AF since july after having it monthly for 6 months which is very odd! I am awaiting an ablation but i feel it might have cured itself 🤔

Yes the sick feeling is awful and i have actually vomited on 2 occasions... Grim!

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Gowers
Gowers
in reply to Hidden

Interesting to see you are given Bisop in A&E didn't know you could have it through a drip and thst you cant tolerate it in tablet form. I am wondering about starting Diltiazem 180 - i am coping better with Bisop so reluctant to change, but cardiologist recc giving it a try

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Hidden
Hidden
in reply to Gowers

It has a progressive effect on me so if i have it in hospital I'm usually whacked out for a week after the episode so recover at home. When i take it everyday i just get tired more each day with the side effects. I'm now on Diltiazem and it seems to be working on my bp and I don't feel too bad on it.

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Gowers
Gowers
in reply to Hidden

I have just started on 180 xl sr Diltiazam - after being on Bisoporol for quite a while. Will be interesting to see if ut helps the AF.

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F-M-C-MM

Hi Gowers,

I experienced thumping and movement in the chest which announced A Fib. On one ot two occasions it was so severe I feared the onset of a heart attack. Sometimes it was accompanied with a rush of blood it seemed to the head. Use of Flecanide also precipitated similar effects when I used it as pill in the pocket to reverse symptoms of irregular heartbeat. I had paroxysmal A Fib and have been in sinus rhythm for nearly a year and a half following ablation. This may sound strange but I was grateful to some extent for these severe warnings as I knew when A Fib started and could act straight away. Once you know how to handle your episodes it helps to alleviate the anxiety which may accompany it. Information is a powerful tool in beating this condition and this website is an invaluable aid for A Fib sufferers. Doctors sometimes prescribe drugs without considering or indeed following through to see how people are faring on these potent medications so you need to be your own advocate....

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Gowers
Gowers
in reply to F-M-C-MM

Thank you for reply. I have v similar symptoms. I always thought Flecanaide was the main remedy (though my cardiologist reluctant to prescribe because its paroxysmal) i have had ex care (B.ham QE hosp) and have heart reveal device fitted which seems to be one of the best ways of monitoring your heart when symptoms are not on-going

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Buffafly

If I have a noticeable episode (a monitor showed I don't notice them all!) I am usually alerted by a few thumps and quivers and a sense of anxiety before I feel my pulse. During an episode I feel a bit breathless and !igntheaded and if my heart goes too fast and I try to do anything I get chest pain, sickness and sweating and threaten to black out if I ignore that! Afterwards I feel wrung out for up to a day, sometimes with headache and spasms of nausea and or diarrhoea. I only feel anxious about possibly having to go to A&E because I really hate that 😰

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Gowers
Gowers
in reply to Buffafly

I can relate to e.thing you mention. Have you had to end up in A&E? My heart reveal device has been a great help as it confirmed AF when gp/cardiologist thought it was tachycardia. Medication is helping but I find AF comes for no apparent reason out of the blue. Are you on medication? Thank you for replying

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Buffafly
Buffafly
in reply to Gowers

I have been to A&E a few times but since my ablation my episodes are shorter even with minimal medication so I've only been once when really my aim was to get an ECG for my GP but it backfired, the ambulance crew and doc were not happy even when I reverted and kept me in all day having tests and waiting for results. I only take Apixaban and the lowest dose of Diltiazem, can't take anything else because of complications which can be a bit frustrating. My GP said I must always go to A&E with chest pain but I don't, just try not to provoke it! My AF is usually set off by stomach upset or chest problem so hard to avoid.

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Tomred

Hi just now reading your question I got what I call a blip I seem to get this the day before a full blown episode which usually lasts about 16-24 hours approximately at start on some occasions I have to pass water every 5 minutes or so and the stairs to bathroom are a real bummer so I tend to use a bottle now as my legs feel weak for using stairs I get breathless I take 1.25 my bistro and am contemplating starting to take dronederone

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Gowers
Gowers
in reply to Tomred

Thank you - is it Bisoporol you are taking? Seems a popular drug for AF but, I had to take my dose in 2 halves and it took some getting used to.

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Tomred
Tomred
in reply to Gowers

hi sorry for spelling mistake yes i take 1.25mg of bisoprolol it has lowered my heart rate to around 70bpm it was around the 90bpm approx and when i take a bout of af it seems to take the edge of it somewhat my gp first put me on 5mg but i honestly couldnt get out of the seat with it once i actually made it halfway up my stairs and had to sit there for a period it totally wiped me but the ep in hospital told me they were taught low and slow so far im tolerating 1.25 mg well :its long term i worry about incremental damage of some sort ep now wants me to take the dronenederone to lower my heart rate to around 60 bpm im thinking this is because when in a fib the bpm rises sharpely so the lower it is to begin with the less harm done ? i think - my mother took bisoprolol for a-fib around 70 and passed away last august at 92 with heart failure when people talk about having palpitations they sort of make little of it as if its harmless not so with a-fib im trying loads of natural things first but so far nothing has worked so now im going down the drug route which i hoped i never would good luck

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Gowers
Gowers
in reply to Tomred

I was started on x1 - 2.50 bisoporol but legs felt like lead and felt so so tired. Now i take it in x2 divided doses am/pm and tolerate it uch better, hr = under 50 ost of the time

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KMRobbo

Mine changed as the A fib developed.

Initially it was fluttery feeling I upper chest/ lower neck. Then it went, but my hr was 165 bpm resting.

I was put on rate control of verapamil 120mg a day and it did not work like this, there was generally not the fluttery feeling, but my hr started to riseovdr a few hours, if it g it past 100 resting then I would got into fast rate afib. Then as my AF developed I started to get an irregular thumping chest (bag of ferretts) for a few minutes then fast afib.

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Gowers
Gowers
in reply to KMRobbo

Interesting - thank you. what rate control med's are helping you?

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KMRobbo
KMRobbo
in reply to KMRobbo

None currently , I had a pvi cryo ablation for afib Jan 29th 2018 , which appears to have stopped the afib for now (fingers crossed). I had a problem 9 days after the ablation when i developed re entrant atrial flutter (right atria) possibly promoted by tbe flecainide I was taking. This required a second simpler ablation which stopped the flutter. I an off all meds since may 15th 2018.

Initially when I developed afib I was on 120mg verapamil for RATE control. I was on this for 20 months but had approx 12 high rate attacks during this time. They got worse until the verspamil did not control the rate enough and had to be chemically cardioverted by flecainide infusion in my local hospitals CCU. (After 8 days between 130 and 190 bpm resting)

I was then put on flecainide 50mg x 2 rhythm control and diltiazem 200mg rate control. I did not get on very well with this drug.

The flecainide did control my rhythm .

I was on verapamil and diltiazem , both calcium channel blockers as I did not tolertate the two betablockers I tried, bisoprolol and Atenolol. They just made me excessively, tired breathless, exercise intolerant and in pain in the case of bisoprolol.

I realised I had to get off the drugs if possible so that is when I asked about the ablation. I also realised that taking the drugs had not stopped the a fib developing ( ie getting worse).

I think the previous description of the feeling had going into afib shows an increase in violence of the entry, there had been an increase of frequency of attacks and also there was a corresponding increase in difficult in getting out of afib after I was in it.

As they say " a fib begets fib". For me anyway.

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Gowers
Gowers
in reply to KMRobbo

Thank you - interesting to read your experience of the medication you were on. I notice as expected, that we all tolerate our prescribed med's in different ways

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Kaioatey

I think our reaction to AF is a reflection of our approach and feeling about life. It can show us how much fear we carry around with us. My experience with AF has been a great help in my seeing who I am, and how my inner beliefs affect my approach to life. I am no longer afraid of AF or life. Most of us are afraid of death and AF is a reminder of our demise. In other words, if we are ok with dying, we are fine with AF. This may be too much a spiritual answer, but that’s where I’m at.

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Gowers
Gowers
in reply to Kaioatey

No, not too spiritual an answer at all - thank you. It does though takes a while to cope with - and reading the many posts on this site makes one realise you are not alone. The anxiety & fear don't help and coping with it takes a lot out of you. as folk have mentioned - washed out feeling etc in the day/s following not unusual

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Buffafly
Buffafly
in reply to Gowers

If it helps, part of the anxiety seems to be an automated reaction to AF - your brain gets a confusing message that you must be in a dangerous situation so it sends out signals to get out of it so you feel anxious which speeds up your AF which then sets off the same loop again ..... Some people feel they are wimps for feeling anxious but you can see how difficult it is to escape the loop and takes practice and as Kaioatey says maybe a change in your whole philosophy of life 😊

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Gowers
Gowers
in reply to Buffafly

Thank you - for the v helpful & interesting information

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KMRobbo

None currently , I had a pvi cryo ablation for afib Jan 29th 2018 , which appears to have stopped the afib for now (fingers crossed). I had a problem 9 days after the ablation when i developed re entrant atrial flutter (right atria) possibly promoted by tbe flecainide I was taking. This required a second simpler ablation which stopped the flutter. I an off all meds since may 15th 2018.

Initially when I developed afib I was on 120mg verapamil for RATE control. I was on this for 20 months but had approx 12 high rate attacks during this time. They got worse until the verspamil did not control the rate enough and had to be chemically cardioverted by flecainide infusion in my local hospitals CCU. (After 8 days between 130 and 190 bpm resting)

I was then put on flecainide 50mg x 2 rhythm control and diltiazem 200mg rate control. I did not get on very well with this drug.

The flecainide did control my rhythm .

I was on verapamil and diltiazem , both calcium channel blockers as I did not tolertate the two betablockers I tried, bisoprolol and Atenolol. They just made me excessively, tired breathless, exercise intolerant and in pain in the case of bisoprolol.

I realised I had to get off the drugs if possible so that is when I asked about the ablation. I also realised that taking the drugs had not stopped the a fib developing ( ie getting worse).

I think the previous description of the feeling had going into afib shows an increase in violence of the entry, there had been an increase of frequency of attacks and also there was a corresponding increase in difficult in getting out of afib after I was in it.

As they say " a fib begets fib". For me anyway.

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KMRobbo

I only went into afib once when on flecainide/diltiazem and that was when i missed taking a flecainide

it only controled my rate to 140 ish. the same when i was in a flutter. This is really too high.

Also unfortunately it also controlled my hr rate in exercise to the same level (if fact slightly less). I could not run more than about 100 yards without being in pain as my Hr hit the limit.

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Gowers
Gowers
in reply to KMRobbo

Thank you for reply

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Sallowe

Lovesailing Unfortunately,I have had AF for 6 years my Acupuncturist noticed it and said I should go to doctor then Consultant. I had ablation and cardio version to no avail, decided not to try again and was given Warfarin and Digoxin which I took for 5 years, however I had an exacerbation of asthma and went into hospital with COPD I found out I had Digoxin poisoning because in 5years I had lost 3 stone in weight and was on too higher dose, which I halved straight away and have it checked regularly now. I now have COPD Asthma AF and Pulmonary Hypertension, but have managed to stay out of hospital this Christmas even though I was ill, thanks to steroids and their side effects just coming down off them,thank goodness.

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Kaz747
Kaz747
in reply to Sallowe

Hi Sallowe, what dose of Digoxin were you on? I ask because Digoxin is one of my current drugs and I have bronchitis. Thanks

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Gowers

Not heard about the effect Digxin can have before - you were fortunate it found out at the hospital and altered. Thank you for reply

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