I am confused: I was diagnosed with AF... - Atrial Fibrillati...

Atrial Fibrillation Support

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I am confused

v624jbb profile image
30 Replies

I was diagnosed with AF n June this year. My heart was racing up to 160 bpm and it lasted for about 3-4 days at this high rate. I was admitted to hospital and put on beta blockers. Over the month or so I was still in AF but at a lower rate. Gradually however over time my heart began to have periods of sinus rhythm but with numerous ectopic beats. I am now almost constantly in this sinus rhythm with ectopic beats. I am still on beta blockers and warfarin .

What is confusing me is that I don't appear to have AF the same way as most people where they either have an AF episode for a few hours and then revert back into NSR or they are constantly in AF. What type of AF do I have? Has anyone else had the same experience of weeks of AF and then gradually going into NSR. I would like some advice please. Thank you

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BobD profile image
BobDVolunteer

It sounds as though you have pretty standard AF. Many people can have attacks which last several days rather than just hours. Ectopics are quite normal and everybody gets them but most other than we AFers don't notice them. When AF lasts less than seven days and reverts on its own it is I believe classed as paroxysmal. If it lasts longer than that or needs cardioversion to revert then it is persistent and if it can not be reverted by any means it is permanent.

What you must accept is that AF is one of those conditions where one size does NOT fit all. We all experience it differently. This is why it is such a complex and difficult condition to treat. Your doctor has chosen to treat you with a rate control drug, a beta blocker, whilst some may try a rhythm control drug like flecainide or even a combination of both. If all else fails then ablation may be considered but under current NICE guidelines I think you have to have failed to respond to two different drug regimes before NHS would consider that.

You are apparently improving and of course protected from stroke by the warfarin so that is a step in the right direction. You might try and discuss you worries with your doctor.

Bob

v624jbb profile image
v624jbb in reply to BobD

Thank you for your reply Bob. I will have a word with my doctor but I don't have an appointment until November. My GP is lovely but I am not sure she knows a huge amount about AF. I will just hope that I keep improving.

Offcut profile image
Offcut

BobD is so right there is not a one stop shop I am on a 2 tablet regime with warfarin i am getting everything at the moment with normal bits in-between. It is a bit of trial and error as we are all so different. I hope it all get sorted out in the end

v624jbb profile image
v624jbb in reply to Offcut

Thank you for your support. I know I am probably just over reacting and realise everyone with AF is different. As you say it is just trial and error.

Mamamarilyn profile image
Mamamarilyn in reply to v624jbb

Hi there........please don't think you're over-reacting. After all it's your heart we're talking about so why wouldn't you want to get all the info you can! As it happens my experience of AF is very similar to yours. I've been in hospital a couple of times in the last 3 months and the last time they couldn't get me into NSR but would you believe, two days after getting home it did it by itself ( well, with the help of meds which didn't seem to be working in hospital!) Since then I've had very few symptoms. As BobD said, it's referred to as Paroxysmal AF and although not life-threatening, is unpredictable! The only thing that catches me out is the tiredness. Some days I have loads of energy and others I have none. Mind you, that could be my age...I'm racing towards my 70th.

v624jbb profile image
v624jbb in reply to Mamamarilyn

HI Mamamarilyn. Thank you for your support. As you say it is so unpredictable. I am exactly like you where some days I am almost back to my normal self and other days I am really tired. Today is a tired day. It is difficult to plan ahead because you just don't know how you are going to feel. Saying that we have booked a weeks holiday for the middle of October. I am determined I will be fine.

Mamamarilyn profile image
Mamamarilyn in reply to v624jbb

Join the club....Sunday syndrome! I've got a trip coming up early November and am hoping I'll be OK as I'm travelling alone although I'm staying with friends in Suffolk, where I lived before. Here's hoping your holiday goes swimmingly. Where are you going?

v624jbb profile image
v624jbb in reply to Mamamarilyn

We are going down to the Cotswolds. We live in the North East of England. Staying in a village called Bourton on the Water. I have been before and it is beautiful. Really looking forward to it. Enjoy Suffolk.

Mamamarilyn profile image
Mamamarilyn in reply to v624jbb

Oh you will love the area! I don't know whether you are National Trust members but I recommend a visit to Snowshill Manor...fascinating!

I live in South Warwickshire and know the Cotswolds well. Have a great time!

v624jbb profile image
v624jbb in reply to Mamamarilyn

Thank you. I will try and visit Snowshill Manor.

Woolfie58 profile image
Woolfie58

Hi, Sounds like you've been through, I would have been worried sick if that had happened to me for so many days! Have you changed anything in your diet recently? The reason I ask is that every time I had an episode I would also suffer from acid reflux which was quite uncomfortable, it was a pre-curser to me having an episode. Four weeks ago I had an ablation to try and sort my AF out, I'm still having episodes which is normal for the next few months until the scar tissue has healed fully. Apart from the episodes i'm having I was still getting acid reflux before an episode, i'd also suffer Acid Reflux at other times which made me thing I was about to have and episode! I was thinking could the Acid Reflux be causing the AF or was it the other way round, if it was why was I having Acid Reflux without an episode, or were both these symptoms unrelated! Anyway I had an intolerance test carried out last week and was advised to steer clear of wheat, cheese,some vegetables, some salad and a few other things. Three days into a change of diet, no bread etc I have not suffered from Acid reflux and I have not had an AF issue of 140 at all, I've had a few minor blips whee I'd go out of the sinus rhythm but the rate would be no more than 80 and would last around ten minutes. This diet is quite hard as I love my bread and cheese but i'll see the ten weeks out as instructed and see how it affects my AF. Chris

v624jbb profile image
v624jbb in reply to Woolfie58

Hi Chris. I had a bad bout of diverticulitis just before my AF started and my consultant thinks this could have triggered it. Apparently the vagus nerve is linked to both the digestive system and the heart so this may be the case with you and your acid reflux.

Mamamarilyn profile image
Mamamarilyn in reply to Woolfie58

Aaaaoooowww Woolfie, good luck with the diet, I'd be really interested to hear how it goes as evidence of therapeutic treatment not involving meds seems to be hard to find.

JamesH profile image
JamesH

On more lighter note, when I looked at your photo, my heart started racing too. J.

v624jbb profile image
v624jbb in reply to JamesH

Thank you James. You have cheered up this 56 year old.

JamesH profile image
JamesH in reply to v624jbb

I have a history of always telling the truth, sometimes it hurts people and sometimes it doesn't. So please don't tell me porky pies about your real age . J

JamesH profile image
JamesH

You are less than 56. J

JamesH profile image
JamesH in reply to JamesH

A little more but all my friends think less. Google James Halpin at MEL Consult in Enfield.

JamesH profile image
JamesH

You may well have intermittent AF. Which means your heart can tick along fine for days or weeks and an attack can suddenly appear. However what it does mean is that medication has to be taken all the time as one does not know when it may appear. J

v624jbb profile image
v624jbb in reply to JamesH

It's looking that way James. I have decided just to get on with life. Have booked a few days holiday in the Cotswolds in a couple of weeks time. I took early retirement last year when I was 55!! so can go whenever I want to. Thanks for your reply. I appreciate your help.

Loquitir profile image
Loquitir

Have you ever thought about getting an AliveCOR heart monitor to attach to your iPhone to capture your episodes of sudden onset AF.

They are fantastic devices and and very easy to use. I use it personally and now able to capture every AF event and email to my doctor. It can record easily by pressing the monitor on your legs, or rest your fingers on it or as I do press it on to the left breast are about 4 cm under the left nipple region. Comes with easy instructions and the recordings are very clear. You also have the quick facility of recording your medications, exact diagnosis or history and any symptoms at the time if the recording of your event. It can record for 30 seconds, 4 minutes or you specify the time or continuously.

This is a huge step forward for paroxysmal or sudden onset AF patients.

The AF Association have been promoting and giving free heart monitors. Take a look at this link.

atrialfibrillation.org....

I used to use a handheld ECG but had terrible problems getting the ECG data to my EP cardiologist. I have abandoned that devise and now use the AliveCOR heart monitor and the almost total seamless process it offers to get your a ECG data to your cardiologist. This way you will have a collection of objective evidence which will help with improving the management of your AF attacks. But remember its good to take ECG recordings of the normal heart activity as well as the AF episodes.

Best wishes

v624jbb profile image
v624jbb in reply to Loquitir

Thanks for your reply. I don't have an iPhone. I have an android. Do you know if you can still get the Alivecor monitor?

Loquitir profile image
Loquitir in reply to v624jbb

I contacted alivecor and indeed they have android services too - that's good news.

Kind regards

v624jbb profile image
v624jbb in reply to Loquitir

Thank you so much for doing that. I really appreciate it.

tk11 profile image
tk11 in reply to Loquitir

My reply from Alivecor re: Android App in UK.

Thank you for reaching out to us. We are planning to expand the Heart Monitor product line to include Android-compatible devices and additional iOS devices in the UK and Ireland by the end of 2013. If you haven’t already, please register your email address atalivecor.com; we will keep you apprised of our progress and unit availability.Please let us know if you have any additional questions.Regards

v624jbb profile image
v624jbb in reply to tk11

I will have a look at that. Thank you

Loquitir profile image
Loquitir

I've never used android so I don't know. You could follow the above link and email the AF association and find out.

I hope they do an android version because it's a pretty useful tool.

JamesH profile image
JamesH

That`s at attitude girl, go for it and enjoy yourself. Once you don`t and get some exercise you should be fine. eat or drink to much. At the end of the day, what will be will be.

Take care J.

CDreamer profile image
CDreamer

I second the AliveCor app, it's brilliant. I took it in to my GP's surgery to show him and he thought it brill as well, I had to prise it out of his hands - literally!

The diet stuff is also very interesting as I also suffer acid reflux as a pr-cursor to AF episode. I am now going to keep a food diary.

Good thoughts people!

JamsH - can we see a pic of you please?

JamesH profile image
JamesH

Off course you ., where is yours? J

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