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Atrial Fibrillation Support

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home sweet home.....

booboo73 profile image
7 Replies

Hi all x my last post disappeared so upset as was so many reassuring replies ??? Anyway after 24 hours I escaped. .. will briefly tell you as soooo tired.

went a&e after 4 hours of AF 160bpm ...did 24hrs before self converting on monday wannt going to wait thst long again.

Over next 12 hrs gave me 15mg bisoprolol...nothing worked.

decided to try me on 100mg flecainode orally after 24Hrs in AF .. took over an hour then heart rate dropped from 130 to 46 in a second. then said I could come home and gave me some flecainode as pill in pocket.

was a nightmare. ...they didnt have no bisoprolol in A&E then had to get flecainode from another hospital so that was the reason it took so long. ..the staff were lovely though.

so now im really fed up.... been ok for 5 weeks on 1.25 bisoprolol the 2 really bad 24 hour attacks in 4 days. does this mean its progressing really rapidly.... just started on flecainode as pill in pocket is that any good.....will I probably end up on it permanent and do you think my AF is looking like it will become permanent. ...im so so depressed with this now x x x when in hospital my heart rate never went below 130 even with all the bisoprolol. ...I cant face going to a&e again and the cardiologist there said I must go if the flecainode doesn't work this time x x x

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7 Replies
BobD profile image
BobDVolunteer

STOP! Take a deep breath and RELAX. Repeat after me. AF will not kill me. Repeat 100 times.

Now for the future. You have now been tried on a beta blocker which doesn't work. You have an anti arrhythmic drugs in flecainide and that may very well work for you for a while. Yes AF almost always progresses if not controlled but lets not get too far ahead of the game here BooBoo. Yogi bear has lots of tricks yet and is smarter than the average bear. OK so I'm showing my age here.

I really think you need to sort out your anxiety problems as well as your AF since it is likely than one is feeding the other at present and clouding the issue. I know you have reason but this doesn't mean it can't be controlled.

I'm afraid that I lose track of people so can't remember if you have seen an EP recently but it is important to remember that many of us succeed in living very normal lives. Why not ask to see the/an EP again soon and discuss your options.

Bob

As Bob said I hope you are being seen by an EP. Re the drugs, my EP tried me, in fairly quick succession (2-3 weeks), on 4 different drugs before getting the one that works for me and now my problems have gone, he said confidently 🙄. I was in a right state before that.

Anyhow, my point is that if the drugs aren't working then maybe they're not the ones for you! As it happens, neither of the two you mention work for me either, but they do for loads of other people.

PS. When I was on the big machine in A&E a few years back, my heart rate was going up and down between 80-160 in seconds. But the "pulse" rate on the same machine was 72. They told me the pulse rate was the average over a minute. Well that doesn't make any sense and the reason as the slowest my heart rate went was about 80. I'm GUESSING that the machine simply could not measure my heart rate properly when in AF. It may with other people but not with me. So I don't fixate on my heart rate any more. I felt reasonably OK although I could feel my ticker going a bit wonky. An EP once told us at the Patients Day, that if you really want an idea of what your heart is doing, then listen to it (Stethoscope), but probably better, just go with how you feel.

I am not medically qualified at all but just my thoughts.

Hope you get things sorted.

Koll

Buffafly profile image
Buffafly

I'm glad you are sorted for now and hope you get a break for a while. If you do get another episode the usual advice is chill (hoho) at home unless you have chest pain (which means any strong squeezing sensation anywhere from your chestbone up, my friend was told to report angina during her stent procedure but she didn't find out how to recognise it until afterwards....) Or blackout or collapse.

Fortunately your cardiologist has given you a rule to follow which should help your anxiety. Fingers crossed you won't need it.

As usual a whole lot of good advice from Bob.......and sadly I too am old enough to know what he's talking about and the Ranger isn't going to like it.

If you haven't already done so BooBoo then read the post "Permanent AF for life" and Grandma's reply. Have you tried meditation at all?

I was thinking about you after you posted about going to A and E and thinking how much better it might be if you had been able to just talk to another AFer. Don't suppose that you have a spare one kicking around that you can take with you per chance?!

wendicarro profile image
wendicarro

Arr bless you, sounds all to familiar though! as Bob says the trick is to chill, easier said than done at the beginning mind, just another hiccup in you AF journey.

Unless severe chest pain, blackouts or breathing problems and now you have flec you

may start to be able to watch and wait as it will probably terminate of its own accord eventually.

You will start to learn what your body is telling you and will develop a coping mechanism believe me.

Good luck in your journey and try to relax if you can, after all ' Tis the season to be jolly'

Wendi x

dmac4646 profile image
dmac4646

from what you say looks as if Flec may work for you - so could well be good news.

soupersue profile image
soupersue

Hi again, glad you are home, hope you had a good sleep.

It does all seem very similar to how I was at the beginning, a&e for hours with heart rate up to 180, loads of bisoprolol and then eventually back to normal except absolutely exhausted, which is not surprising as heart has been doing a marathon.

Eventually I saw an EP who changed my drugs and gave me Flecanide as pill in pocket and it has worked for me, it takes about an hour and a half but knowing it will work is so reassuring.

Your A&E experience sound terrible but I am glad the staff were supportive.

I genuinely was having af attacks all the time and as Bob says I think the panic I was in was setting off the attacks and round we go. The good news for me is that I now rarely get a bad attack (am touching wood) and I am sure it's because I am not so very frightened by AF.

Also I am able to phone the specialist nurse at the Hospital in Southampton when ever I need to and I have this forum as a support system.

As always, hugs.

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