Fed Up!: I'm so fed up with my AF at... - Atrial Fibrillati...

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Fed Up!

Jason1971 profile image
19 Replies

I'm so fed up with my AF at the moment. Over the past few months I have had regular episodes, weekly in fact. After losing a lot of weight I found out I have an overactive thyroid which was probably caused by being previously prescribed Amiodarone. Last week I saw my cardiologist for a consultation and it went OK. He has referred me for an ablation, so I guess that's one positive if all goes well.

After my consultation I was fitted with a heart monitor for a week. Prior to my Tuesday consultation I had been in AF since the previous Sunday, Sods law would have it that my episode finished whilst waiting for my appointment. After 1 week of feeling fit and well whilst walking around with wires strapped to my chest, I handed the monitor over yesterday. As of an hour a go I have gone back into AF!! I hope not having an episode whilst wearing the monitor doesn't go against me when I eventually get an EP referral.

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Jason1971
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19 Replies
BobD profile image
BobDVolunteer

Wearing a Holter monitor is a guarantee that no AF will happen. I don 't know why they don't just fit them to all AF patients permanently. lol

Kjporten profile image
Kjporten in reply toBobD

Very funny!

jennydog profile image
jennydog

Have they got your AF recorded on a previous ECG? If not, then I suggest that you try to have a recording done when you know that you're fibrillating. That will help the EP to see what he is dealing with. In the meantime keep a diary of your attacks to show to the EP. They will only do an ablation if it is going to improve your quality of life.

Jason1971 profile image
Jason1971

Thank you all for your replies.

Jenny, My first couple of ECGs back in 2012 show me in AF, so I was quite surprised to be asked to wear the monitor. I thought it was some kind of box ticking exercise.

Bob, you've probably hit the nail on the head. When I had it on I was hitting all known triggers listed on this forum without a second thought. Probably the only one missing was anxiety.

3! It wasn't such a bad experience, but I kept getting woken up when my leads slipped off. I can still hear the beeping if I close my eyes :)

GolfMyrtleBeach profile image
GolfMyrtleBeach

It certainly is a frustrating thing. As one who now has short episodes every 3-4 days, I was riding on a 9 day Afib clear streak. You start to think " maybe, just maybe I've ditched it". Then at 9AM and out of the blue into Afib I go!! Oh well........

Jason1971 profile image
Jason1971 in reply toGolfMyrtleBeach

I know that feeling. 7 days is my PB since June, then it's usually 2 days of AFIB. Bit of a pin really, as I can't really organse anything.

iris1205 profile image
iris1205

I do believe there is an element of reassurance when we are wearing those monitors that make us "calmer". So sure we will catch it "this time". Go to A&E next time you are in Afib and get an ECG. Moves the project along quicker! Best wishes

Jason1971 profile image
Jason1971 in reply toiris1205

Thanks Iris, I've always steered clear of A&E, as I think I'm taking somebodies time who could be really ill, but if that what it takes, then so be it.

iris1205 profile image
iris1205 in reply toJason1971

Jason, I agree completely. In 4 years I went 4 times, and then when I got the alivecor and they saw how my episodes were so: intense, so often and so clearly AF, everyone changed their "tune" and approached me as if I was crazy that I'd let it go so long.

A brave face is not always to our advantage. We adapt slowly to this "mongrel" condition as Bob calls it so well. And in adapting slowly we attempt to take it less dramatically and in fact it wears us down like water flowing over rocks in river! Though not with as lovely a melody!

Take care.

fallingtopieces profile image
fallingtopieces

When I had my last 48 hr monitor on I did all I could to show up my abnormal rhythms.

I drank 2 very large glasses of wine one night, did lots of exerting myself running around and even kept myself short of sleep but all I had was a few single ectopics.

A few years ago I had a 3-4 week episode of what I think now was AF, but it all completely stopped the day before my 24 hr monitor was fitted!

Pat.

Jason1971 profile image
Jason1971 in reply tofallingtopieces

I did the same Pat. Other than go out and get absolutely legless, I tried just about everything :)

That's typical of AF isn't it? So irritating for you. I'm sure if you explain they will understand, they must get it all the time. Plus probably you would have had small disturbances you weren't even aware of when you were being monitored. I hope the ablation comes round soon :)

Jason1971 profile image
Jason1971 in reply to

Thank you. I agree, I bet they do get this quite a lot. Hopefully I will get a sympathetic EP who understands how much my AF is impacting my life.

Japaholic profile image
Japaholic

Thats the way of it with holter monitors, thats why I bought an alivecor, I have been with my cardiologist for a year now and he still hasnt seen an ECG of me in AF and I see him every month.

Jason1971 profile image
Jason1971 in reply toJapaholic

I've had an Alivecor for about a year now and it has me plenty of times in AF. When I've mentioned this to the Cardiologist, he doesn't appear to impressed. Hopefully, when I do get to see the EP he will have at least heard about Alivecor.

kakapo profile image
kakapo

For a six-week period while I was on sotalol I was almost constantly in and out of af . The only time I had none was-you guessed it- on a 24-hour monitor.

Kjporten profile image
Kjporten

I have had the same experience, very frustrating. My father and my son have experienced the same thing. It wasn't ipuntil they found that my ejection fraction had gone down to 51 that they decided something must be happening and believed me that they just were not able to catch my afib but believed it was happening. Good luck and keep pushing the medical folks to figure this out for you. That is their job.

Rellim296 profile image
Rellim296

Jason I had a week's monitor (which I found very very itchy) and guess what - nothing but sinus rhythm showed up. I could, at the time, go for a couple of months with no AF. I suppose it was good that there weren't little things that I was not noticing. It didn't slow down my prospects of an ablation at all. There is always the thought that the earlier it is treated, the better.

Parco profile image
Parco

Jase....sorry to hear this....we've spoken many times mate and share the same chronic love for LUFC. I guess the ablation is the holy grail in some ways? I just worry about the future and what will be, will it get really bad and what will my quality of life be like...see you Thursday

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