I’m new here: I’ve just been diagnosed... - Atrial Fibrillati...

Atrial Fibrillation Support

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I’m new here

Cha275rL profile image
7 Replies

I’ve just been diagnosed with AF last month, although I’ve had it for about a year, but had no idea what it was. What I’d like to know is this :- can anybody tell me how to stop it, once it has started. I always get a feeling in my chest that I’ve run too far too fast, and I hate it.

Thanks in advance.

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Cha275rL profile image
Cha275rL
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7 Replies
BobD profile image
BobDVolunteer

That is a the million dollar question. AF starts and stops when it wants to not when you want it to. Better to find coping stategies.

You do not say who is treating you or with what which is important.

Why not go to Af Association website and read all you can as knowledge is power. There is also a list of usful links under pinned posts to you right.

I think you will need to find out as much as you can about AF first because it’s what we call a mongrel condition, in other words it affects patients in a variety of different ways therefore there are no simple, one fits all solutions. It’s a bit of a slog, but the easiest way to start is to click on the Pinned Post to the right of this page headed “Useful links for Newbies and Oldies”. That will take to a variety of useful webpages that will provide you with lots of information about AF.

Take a look at the first Pinned Post which is fairly new and very helpful.

From what you have said, it sounds as if you have Paroxysmal AF (PAF) which means your heart develops an irregular heartbeat which is often, but not always, much faster than normal. At this stage, it is probably more beneficial to establish what it is that might be causing this irregularity because if you can avoid the cause, it is less likely to occur. Hopefully, if you have been recently diagnosed, you have either have been or maybe will be referred to a Cardiologist who will establish a treatment plan for you.

There are a few things you could try such a deep, slow breathing or the Vusalva Manoeuvre. Squeeze your nose, keep your lips pressed tight and forcibly breath out for as long as possible and at the same time, (this will not be very elegant), follow the principle of forcibly trying to break wind. Sounds weird I know, but worth a try in the privacy of your bathroom!

Once you have found out more about “your” AF, you will probably have more questions......the folks here are a helpful bunch .......

secondtry profile image
secondtry

Usually as a first stage you will be offered pills to stop it. Sometimes if your Vagus Nerve is more prominently involved (which is the case for some of us AFers), you can stop it yourself e.g. by resting and focussing on a slow heartbeat recording (on say your iPad), taking a cold drink or shower or walking/cycling at a steady regular pace. We are not medically trained here or know your circumstances so before any action you need to read a lot of information on this Forum and check with your medics. Its a steep learning curve but you will be pleased with the results if you do your homework and are persistent!

wilsond profile image
wilsond

Where were you diagnosed and are you having follow up appointment to discuss treatment?

Many of us have seen improvements by looking at lifestyle choices,such as weight control,diet,stress relief etc.

Some of us have fast irregular AF others not fast but irregular and there are medications available to suit,if appropriate.

As others have said the fact sheets mentioned are really good .

Lots of support on here xx

aFibber55 profile image
aFibber55

Welcome to the forum. I was new here last month and just wanted to say that the forum has been a very helpful resource. I can seen that you have a few replies and pointers already.

Once you get your follow up from cardiology (probably on the phone) you will have a better idea what to expect in the future and hopefully you will be given contact details for a specialist nurse for further information and support.

Read your medication information throughly as anticoagulants especially have many contraindications (I.e. anti-inflammatories, some antibiotics, some suppliments and even some foods)

I found the NICE guidelines for AFib treatment helpful to understand that what should be included in your treatment plan.

I also found the list of abbreviations for newbies helpful and soon you too will be talking in code about which PIP your EP recommend for better QOL🤣

The 24 hr helpline from Aryhtmia Alliance was excellent (01789 867502)

info@afa.org.uk

There is also a new set of videos and articles by AFA (I think) to which there was a link on this forum a couple of weeks ago.

It’s also helpful to list your queries and concerns and I keep them in my Notes on my iPhone in case I get someone coming back to me when I am out and about and my notes are at home.

My list had the following on it

Who to contact and when if I get another episode

How long is it safe to wait for episode to pass

How do I to get to see the cardiologist again

Could I have Pill in the Pocket to try to stop an episode

Is it safe to exercise

Common triggers

Should I have a home monitor for blood pressure and pulse

Anticoagulants and minor surgery

I found my diagnosis difficult to process and I was extremely anxious first. I also felt that I had not been given enough information or the information I was given was contradictory.

There were delays and difficulties and extra stress caused by Covid, but after talking to AFA helpline and finally yesterday to a specialist nurse at the cardiology, I am feeling so much better.

GP’s are not always as well informed as the specialist and the telephone or worse still, text contact with your doctor is brief and unsatisfactory.

I have found that emails work quite well if all else fails. You can be concise and clear in your queries and as it leaves a ‘paper’ trail, you usually get an answer pretty quickly.

I had to send one to my consultant as I was still waiting for my follow up appointment two months later and found out that I was actually given an appointment for next week, but I hadn’t received any notification and would have missed it.

I now know that once you are on anticoagulants, AFib is not an emergency.

If you are not on anticoagulants, it’s recommended to get referred to cardiology within 48hrs as after that it’s not safe to perform cardioversion due to a possibility of stroke.

If you are on anticoagulants and not having chest pain or breathlessness, you can wait longer, although I would still talk to someone for quidance. It’s a bit scary to deal with it at home for the first time.

It’s good to keep a diary of episodes as it’s helpful when considering perhaps different medication or ablation if your episodes are frequent and/or severe.

It’s also recommend to keep a list of possible triggers (mine is Vasovagal and connected to acid reflux) but it’s also important to realise that sometimes episode happen for no reason at all, so no point beating yourself up about it.

I was so disappointed when I had my first one since diagnosis as I have worked so hard to lose weight (12kg now🎉🎉) and I was also hoping the medication would prevent them, but it is what it is , I feel generallly better after my lifestyle changes and I am coping better now that I have had most of my queries answered.

Hope this helps.

Coco51 profile image
Coco51

Good advice above. But it is a horrible feeling as everyone on this forum will agree. It takes some getting used to, but many of us have found ways of coping.

It is easy to become anxious and make an AF episode worse by flooding your body with adrenaline which speeds up the heart rate more. So learning to relax is important.

Some people find drugs like Flecainide and Bisoprolol keep AF at bay or make the episodes less severe and more bearable....and then worry about taking medication.

The doctor will also recommend anti-coagulant drugs like Warfarin or Apixaban.

Some go for an ablation, which sounds drastic but can work wonders particularly if it is done early enough. Since 2015 I have had 2. Even when ablation doesn't completely cure AF - as in my case - it certainly has made it more manageable. Unfortunately a consultant at our latest support group Zoom meeting said all ablations nationally are suspended because of Covid except for life saving ones for heart failure etc. But all those highly trained Electrophysiologists will be back on the case before too long.

Meantime, you may be able to find triggers like big meals or fizzy drinks, msg or caffeine or alcohol. Avoiding those may help. But you may find it's all totally random.

You may find it helpful to get a Kardia AliveCor device or smartwatch to record episodes. I kept a diary but my EP would say "Are you sure these are AF?" Next visit I gave him the print outs from the AliveCor. He was impressed, all scepticism vanished.

So welcome to the forum and your AF journey. It's not the end of life as you know it, though it can feel like that. You will become a bit of an expert and find ways of dealing with it.

Cha275rL profile image
Cha275rL

Thank you all for being so incredibly helpful. Never having been here before, I wasn’t sure if anyone would answer at all, and I very much appreciate it.

I do get very anxious about it, which won’t help. The hospital doctor put me on Riveroxaban 20mg, and I take pills for HBP, but apart from that, although I’m an old bird, I’m quite fit and do a lot of exercise, so don’t know what triggers it. My own doc just said that if I get fed up with it keeping coming, then I should go and see him. Didn’t fill me full of confidence!

Thanks again guys, I’ll probably have some stupid questions until I get used to it.

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