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confused about AF

Fondant profile image
21 Replies

Back in July 2021 I was out running and I triggered an apparent AF and stayed like that til September. Then in September I had a successful cardioversion and since then I have been fine (apart from quite bad cardio anxiety)

My question is this, I have read and been told the AF is a progressive and permanent disease and there is no cure. So should I be on some kind of medication??? after my cardioversion I had a follow up and I had good BP, good HR at rest and so I was told to stop taking blood thinners. Every now and then I get the odd skipped/missed beat feeling In chest and sometimes palpitations which I think may be linked to anxiety but I have now been clear for a year of anything major! No racing heart, no continuous arythmia! So should I just not worry and crack on?

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Fondant profile image
Fondant
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21 Replies
pottypete1 profile image
pottypete1

If it ain’t broke don’t fix it.

Pete

in reply topottypete1

That’s a better way of putting it 😉

mjames1 profile image
mjames1

We're not medically trained here, but with that said, my opinion is you probably don't need to be on any medications, the caveat being if you have a high Chads2Vasc score, in which case NOACS (thinners) might be an option. You can google it for more information.\

But what you do need is some sort of plan if you go into afib again, because the odds are you will. Unfortunately it is the nature of the best. So if I understand you correctly, three months is a long time to remain in afib. Prior to the cardioversion, did they give you any drugs to bring your heart rate down or was it afib with a normal heart rate?

So moving forward, you might consult with at least a cardiologist to make sure you don't remain in afib for that long a period of time again. Either they can prescribe a rhythm drug like Flecainide as a Pill in Pocket (PIP) to convert you hopefully within hours, or at least get you cardioverted within a week or so.

Jim

Hello Fondant and welcome to the AF forum. I see you have made a few posts with the British Heart Foundation but it’s good that you have found us because as it says on the tin, we focus on AF. As you probably know, we tend to work on the basis that no one is medically trained and therefore cannot give direct advice on prescribed medication or treatments but we can offer advice based on our own experiences. Although there is a significant age difference (I’m 75), my experience was very similar to yours way back in 2014. I had some slight breathing difficulties but no other symptoms when I was diagnosed with persistent AF but unlike you, I reacted badly to being told I had a heart condition and the symptoms got significantly worse so try and keep a cool head and learn from my mistakes. With hindsight I was my own worse enemy and consequently made the situation I believe, far more difficult than it needed to be.

Unlike you, I did have to go on medication to slow the heart rate which rose to about 140 bpm and because of age, I needed to take an anticoagulant to reduce the risk of stroke. However, like you I also had a cardioversion and that worked well for about a year before a rhythm drug (Flecainide) was added which kept me in rhythm until 2016 when I had my first ablation so that’s a bit of background information.

What you say about the condition (not disease) being progressive and no guaranteed cure is largely true but it does not necessarily mean that you need to be taking medication, especially as you say you are currently in sinus rhythm. As far as medication is concerned, there are 3 main types used to manage AF.

1. Rate medication - beta blockers or calcium channel blockers are used to help control your heart rate but if your heart rate is within normal range ie between 60 and 100 (90’s better) then these may not be required particularly if you are also in normal sinus rhythm. However, they also help to control blood pressure so if that’s a problem then that’s something to discuss with your Doctor.

2. Rhythm medication - Flecainide is commonly used but there are others which help to control the irregular heart beat which is AF but as you are in normal sinus rhythm, you don’t appear to need that either. For patients in permanent AF, they would normally only take rate medication because they have accepted that there is nothing to be gained by taking rhythm medication.

3. Anticoagulant medication - the need for this medication is normally determined by something known as the CHADsVASC test which is best Googled otherwise I won’t get to bed tonight but it is something which needs to be taken very seriously because AF is known to increase the risk of stroke and that really is something you will want to avoid. Given your age and assuming you may not have diabetes, high blood pressure and other heart related conditions, this may be a medication which you don’t need to take as well (at the moment)

Although there are no guaranteed cures, there are treatments available which can manage AF symptoms very well. I have had one CV and 2 ablations since 2014 and with occasional use of a rhythm drug, I have been in rhythm 95% of the time since then.

Finally, think about seeing an EP (Electrophysiologist is a cardiologist who specialises in arrhythmias) but at the moment you seem to be doing just fine.

Gillybean123 profile image
Gillybean123 in reply to

I think you have explained Af and the treatments very well there. I’m an old hat at AF but you pointed out some new things to me as well. Thanks.

Ducky2003 profile image
Ducky2003

Yep, I'd just crack on. You may be lucky and not have any more issues.😊.

CDreamer profile image
CDreamer

Hi - I wonder who told you that AF

My question is this, I have read and been told the AF is a progressive and permanent disease and there is no cure. ???

AF is not like CVD which requires prophalactic treatment. Some people have one episode and never experience another. Some people are successfully treated - hang around and read some of the posts will reveal that it is a very mongrel condition with so many relevant factors which can cause and trigger an episodes - including exercise - which is often a sign of vagal AF. Moderate exercise is good but there are also many elite athletes who experience AF, along with fighter pilots.

AF in older age, +65-70, may become progressive but even then most will be managed. There are some who are in persistent AF and don’t even know it and they are probably most at risk of stroke or MI which may be reduce by taking prophlactic anticoagulants. Other than that - I would avoid taking any medication and crack on.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toCDreamer

Hi CDreamer

The quote is saying...

Although one can be CONTROLLED but AF is more difficult to cure.

I was told that I will have AF for the rest of my life.

Cant have Ablation or Cardiversion. I have part of my heart enlarged.

Cheers JOY. 73. (NZ)

ObiDyer profile image
ObiDyer

Crack on and enjoy it! Just on my 6mth anniversary of persistent AF with cardioversion tomorrow! Your message gives me so much hope that I can consign this miserable period to history but sadly everyone responds differently to it and its treatments so TBC!

Don't let AF eat up any more of your life. Don't be silly but go have some fun!

ILF1 profile image
ILF1 in reply toObiDyer

Good luck tomorrow. Am in persistent AF and been told I have a 47 week wait before I will be offered an appointment at our local hospital as I am considered “routine”. Trying to get seen sooner and being supported by my GP surgery on that. Everything crossed. Hope it all goes well tomorrow

CDreamer profile image
CDreamer

PS - if you haven’t already, I would suggest reading the Haywire Heart - Dr John Mandrola - who has AF, is an EP (cardiologist specialising in arrythmias), and an endurance athelete.

You may find this blog of his interesting drjohnm.org/the-mysterious-...

Mine stopped for four years, then suddenly restarted pre a successful ablation. My regret is not giving up alcohol after the first two episodes. That appears to be a trigger and I may have delayed the next round a few years later. So your heart may be quietly receiving signals now but not enough to cause an episode. I hope yours stays quiet for years! Little to be done except make sure your lifestyle is as healthy as possible to limit the chances.

Jpot34 profile image
Jpot34

If AFIB gets worse, and reduces the quality of your life, I'd find a way to get the mini-maze procedure. Best chance to put this evil affliction behind you!

secondtry profile image
secondtry

In the majority of cases I believe AF is a warning from the body that a lot has been wrong or is currently.

The cardioversion has bought you time and you have youth on your side. Don't be complacent and 'just get on with life' hoping for the best. It is clear from anxiety running through your post that you need to start there and at the same time address a host of other lifestyle changes (all discussed here); it won't ruin your life and could save you from AF for the rest of your life plus other common chronic issues.

Tryfan profile image
Tryfan

You don't say how old you are. As for anti coagulation ( don't call them blood thiners as you'll upset a lot of readers). Age sex and predisposition will give a score as to whether anti coagulation is necessary. I guess your younger than most of us.My only advice as an ex runner, cyclist is to avoid red lining your heart beat for extended periods. Enjoy your exercise rather than beating yourself or the clock. Stress I find is also a major contributor. Easy to say but try relaxation techniques mindfulness, yoga or Chi gong.

Rossdkemp profile image
Rossdkemp

Hi Fondant, my first experience of AF was passing out whilst playing football when I was 27/28. I never knew at the time to check pulse and by the time I had got to see a doctor I was fine. They did some tests and told me I may have a virus. Around a year or so later I went into AF which didn’t resolve and had to get a cardioversion a few weeks later. At that point I was put on a maintenance dose of flecanide and had no other issues for another year but then it happened again. At that point I had an ablation then a second ablation but it seemed that strenuous exercise continued to set it off. I quit football back in April 2021 and now just take long walks to stay fit. I’m on no medication and haven’t had any issues since then (my longest period Af and medication free). Everyone is different but for me it seems like it was progressive and the strenuous activity doesn’t help. I’d say crack on and see how you go. If it comes back there are treatment options and if they fail and strenuous activity is the trigger at least then you can make a choice about your exercise options. I’m 36 now btw so almost 10 years into the journey and I’ve probably never been fitter since I left school. My VO2 max (according to apple) is 47 which seems pretty good for my age.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

HiAnxiety causes palpatations. But get checked out. have another ECG and 24hr monitor.

You still need to keep your spec or dr involved.

Cheri JOY 73. (NZ)

BlueINR profile image
BlueINR

I've never hear that afib is progressive or that there is no cure. It's true afib can turn into another arrhythmia bue in and of itself, it's not fatal. As for cure? Well, there are treatments, some work better than others thought a lot depends on the individual. I wouldn't ignore what feels like irregular beats to you and would mention it at next cardiologist visit.

Fondant profile image
Fondant in reply toBlueINR

Well this is just it you see, I don’t have anymore visits to cardiologist. I got discharged back to my GP and they will probably just refer me back. Feel like a tennis ball.

Gillybean123 profile image
Gillybean123 in reply toFondant

Hi there, you must tell your doctor everything. Tell him you are not happy. You want to know more about AF. When you read all the messages on here you will know more about AF than your GP. But you must not let them know that. I know you are young. They will dig deeper and you will feel better. Say you want to see your cardiologist again. Are you in the UK? Keep in contact on here.

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