clarification : hi everybody, my EP... - Atrial Fibrillati...

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clarification

Shopgal67 profile image
23 Replies

hi everybody, my EP reassured me that my chad’s score was 0 so an AC was not needed .

I’ve now read something that has concerned me , if an episode lasts for more than 24 hrs a clot can form and a stroke may follow.

my longest episode was 18 hrs and now I’m worried if I get a 24 hr episode I could be in trouble.

Maybe I misunderstood but I thought it was the risk level rather than the duration of an episode that was used to calculate stroke

I’m not on any medication because I’ve had two appointments rescheduled, my next appointment is in December. any insight greatly received .

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Shopgal67
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23 Replies
mjames1 profile image
mjames1

It's a complex subject that can breed confusion. But unless you're willing to do a very deep dive into the literature, I would listen to your EP and follow their guidelines. To me, they seem right on.

Jim

Shopgal67 profile image
Shopgal67 in reply tomjames1

That’s what I thought, I knew I’d get some great advice here . Thankyou

BobD profile image
BobDVolunteer

The stroke risk is because you have AF not how long any events last.

What may have confused you is that in the even of an electric cardioversion(DCCV) being required to put you back into sinus rhythm, after 24 hours you need to be anticoagulated in case of any clots forming. In practise it is more likely that a DCCV would be performed after a TOE(trans oesphageal echocardiorgram or ultra sound examination of your heart ) tocheck for any possible clots.

CHADS2VASC2 is the scoring system to decide if you need full time anticoagulation and you could ,should you choose, google this and confirm that your EP is correct but with your age and no other co morbidities he would seem so.

Shopgal67 profile image
Shopgal67 in reply toBobD

I was hoping you would reply Bob , I was told I was at more risk of a spontaneous bleed if I took an AC now and I remember asking about a longer episode! Thanks for putting my mind at rest .

Buzby62 profile image
Buzby62

Here is the info sheet

api.heartrhythmalliance.org...

Included in the following full list of all the info sheets

heartrhythmalliance.org/afa...

Hope these help

Best wishes

Shopgal67 profile image
Shopgal67 in reply toBuzby62

That’s fantastic, thank you so much , I love this group .

Teresa156 profile image
Teresa156

Hi Shopgal67,

I’m the same as you, CHADs score of 0. Incidentally, we both would have originally had a score of 1 for being female, but I was told by my EP’s arrhythmia nurse, that they have now removed this and we’re back to 0.

I also would listen to their advice. They know you and know how long your episodes are.

Shopgal67 profile image
Shopgal67 in reply toTeresa156

Thanks for your response, some weeks my episodes are a couple of hrs and other times it’s 12/14 hrs . It’s so up and down!

BobD profile image
BobDVolunteer in reply toTeresa156

The +1 for female only ever came if you already had a score EG 65+ or with hypertension etc.

Teresa156 profile image
Teresa156 in reply toBobD

Thanks Bob. I was told I was a 1 purely for being female, at 58 by my GP and the hospital? . My arrhythmia nurse then told me last week I was now a ‘0’ and had removed that 1 for being female, earlier this month apparently. I know they follow the European Cardiology guidelines so perhaps it’s something to do with that?

I know it was always contentious though..

I just wanted to say too, that my hiccups after my ablation in June have calmed down and had stopped just after five weeks post ablation ….and hopefully all is quiet, at least for now 🤞 you were right as always and I should have been more positive and listened to you. The fact sheets were a god send. Thankyou.

Silky57 profile image
Silky57 in reply toTeresa156

Oh that’s interesting it’s been removed. Same scenario. My EP scored me 1 for simply being female. Now it seems I’m a zero - excellent!

Teresa156 profile image
Teresa156 in reply toSilky57

You most definitely are 😊

Teresa156 profile image
Teresa156

I do understand why you’re worrying, as the thoughts have come into my head too. As far as I’m aware it’s based on risk and what other comorbidities a person has, which makes a difference. I’m 58 and have had AF for nearly 20 years ( never caught in ECG) but episodes were infrequent most of the time, with the longest at 12 hours during past few years. I had an ablation in June, so time will tell…

I was reading some of your earlier posts about you visiting a cardiologist who played down both medication and ablation, is your AF heart rate quite low when it happens? I just wondered why they didn’t recommend medication, even something you could take as a PIP when you had an episode to perhaps help it stop sooner?

Have you ever been offered an ablation by the EP who has since seen you ? Is it something that you don’t want to consider or have been put off of?

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toTeresa156

Hi

Some of us can't consider any cardioversion, ablation or anti-arrhymic meds like Flec....

Reason is it's not safe if your structural condition of your heart is abnormal. Mine is.

But I could take and do take a low dose of Diltiazem which also acts and is safer to bring down heart rate and in so doing acts like an anti-arrhymic med.

For me mucking over 2 BBs to bring down my rapid Day heart rate dramatically was ridiculous.

So not everyone can consider the above amd its not that they won't because of their anti consideration or have been put off by other folks experience.

cherio JOY. 75. (NZ)

Teresa156 profile image
Teresa156 in reply toJOY2THEWORLD49

Hi Joy,

I wasn’t suggesting that Shopgirl went for an ablation, or even a cardioversion and I know that many people can’t take various meds for whatever reason, but I was reading back on Shopgal’s previous posts and it looked like her cardiologist was generally against medication and ablations and put her off. There didn’t seem to be a reason, which is why asked if it was just her cardiologist’s views in ablation as a whole.

All I wondered is whether she may be able to take something like a bisoprolol as a PIP ( not daily) just to calm her episodes and revert quicker, rather than wait them out the full 14 hours in AF.

Shopgal67 profile image
Shopgal67 in reply toTeresa156

I’ve had a couple of appointments cancelled and my next one is due in December.

I’m nervous about medication and my cardiologist painted a very bleak picture about these !

My heart rate varies with PAF , some episodes my HR will stay low , others it’s higher and that triggers my anxiety.

I’ve certainly got some decisions make in the next few months.

Teresa156 profile image
Teresa156 in reply toShopgal67

Thanks for coming back😊

I thought it might be your cardiologist that put you off. There are many different medications for AF and you’re not alone in being nervous as none of us really want to take any, but they can help to lessen the effects of AF and in the case of a PIP (of something like a beta blocker) it would reduce the heart rate and can, for a lot of people, including me, revert it quicker. Some take fleconaide which is anti arrhythmic ( can be given if you have a structurally normal heart) and this can be very effective as a PIP. There are many others…I suppose I’m just trying to say you don’t have to sit there for 14 hours, anxious and hoping it will stop soon, you can try and ease it on its way quicker. Treatment of AF is always about Quality of life.

I didn’t want pry, but I did read that your HR could go quite high - 140 at times? Was that captured on an applewatch?

With AF, I know it’s hard keeping a track and it’s up and down anyway, but 140 is still fairly uncomfortable for many hours ( mine has gone to over 180 sometimes). It might be worth trying to get a second opinion if you can and perhaps someone who can explain the different types of medication and pill in the pocket too. I’m certainly not pro medication, but they can help.

If your appointments keep getting cancelled ( I know the feeling 🙄) can you push to getting a private consultation with an EP instead? They will have different views to a cardiologist. You can contact them usually via their secretary, you can refer yourself and they usually see you again for a follow up consultation via the NHS. It’s about £200. A lot of us have to resort to this.

I hope things turn out well for you x

secondtry profile image
secondtry

I wouldn't worry too much. The medics err on the AC side anyway and I understand there are thousands wandering around with undiagnosed permanent AF and they are not dropping like flies in the street 😆.

More concern is required if you have other comorbidities but I am assuming you don't ie Lone PAF.

Ppiman profile image
Ppiman

It seems such a complex area that I would be guided by a cardiologist, as you have been.

If you are interested, however, from reading online, I have found that the stroke risk seems to come from, not so much the AF itself, but - oddly - from the shape and size of something called the "LAA" or left atrial appendage. This is a small remnant sac or pouch-like structure situated within the left atrial cavity in all of us, which derives from the early foetal heart before we were born. The clots that form and are potentially able to cause a stroke during AF form inside this pouch - but only in certain shaped LAAs.

It's unlikely that an individual's LAA shape will ever be found as it requires complex ultrasound or MRI scanning, it seems,, so anticoagulants are given regardless of this, if certain other criteria are met from the Chads2 calculation and score. I gather in the USA and in certain situations in the UK, closing this pouch surgically is sometimes carried out as a means to stop the stroke risk.

Steve

Shopgal67 profile image
Shopgal67 in reply toPpiman

Wow , that’s an interesting read and certainly worth noting .

I’ve had a couple of scans and my heart seem structurally fine . Not sure if that would be looked for on the scan though.

Thanks for your response.

Tapanac profile image
Tapanac

I was told by my EP at St George’s tooting that anyone who had afib or tachycardia should be on an anticoagulant. It’s not the duration it’s the afib itself

beach_bum profile image
beach_bum

It can be confusing as everyone who has AFIB is different. Permanant, Paroxysmal, rare etc. Different triggers if any. Some with comorbidities, some severe, some slight, age, gender etc etc.

Personally, I have been on CCB’s and AC’s since my first episode 3 years ago. The 1st episode lasted 13hrs, the next a year later was 30 minutes, the next about 3 months ago was 22 hrs, adn all but the initial resolved themselves. Because of the last and longest episode, they upped my Diltiazem dose from 180 to 240mg. No further episodes, no side effects.

My FIL also has AFIB, stopped taking his Xeralto for 2 days because he had a nose bleed (he has always been prone) that wouldn’t stop…and sadly had an occular stroke and lost most of the vision in his left eye.

Everyone is different. Listen carefully to your medical professionals.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I think the CHAD score is based on if you are over 65. And you are not.

If you were 65 it would be 1 for being female and I think 2 for being 65.

But I had a stroke at 70 out of the blue.

Undiagnosed thyroid cancer caused the AF. At 2am it caused the stroke.

Unmedicated except B12 for deficiency.

I understand the thinking and I would too. AF can cause a clot to form. My stroke was the Embolic Ischaemic type a clot lodging in the left frontal lobe.

On day 4 I had a Carotid arteries check - squeaky clean but it was this scan which detected a shadow on my right thyroid lobe.

So I would question the risk of your AF causing a clot and not being protected even though you are younger than 65.

Even pill in pocket would be better than none.

Take care and I would support your degree of risk. Talk to your doctor and get someone interested in your line of thinking.

cherio JOY. 75. (NZ)

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