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Atrial Fibrillation Support

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AF?

Anxiousarabella profile image
41 Replies

Hi all, hope you can help me. I have been having problems with my heart for over 6 years now. Mostly Racing and ectopic beats. I have had many ECGs and had 24 hour monitor and one for 5 days. All they picked up was one episode of SVT which they did not seem bothered about. I am on a beta blocker but every time they asked me to take a larger dose it slowed my heart right down and gave me chest pains. Recently my hubby brought me a Kardia machine. I was woken in night by heart racing so I did it and it come up possible AFib. Now would you say that is enough evidence to show my Gp or should I wait till I have had it happen a few times? Thanks for any advice.

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Anxiousarabella
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Peony4575 profile image
Peony4575

Do you have a cardiologist ? Most GOs aren’t good enough at reading ECGs. Personally I would get it checked . You can email the Kardia doctors to get a definitive answer

Anxiousarabella profile image
Anxiousarabella in reply to Peony4575

Thank you Peony - I was under a cardiologist but once they put me on beta blockers and did the stress test - they just discharged me to my GP. I feel there is something wrong but I guess I will have to get him to refer me again.

Peony4575 profile image
Peony4575 in reply to Anxiousarabella

Have the beta blockers helped you at all ?

Anxiousarabella profile image
Anxiousarabella in reply to Peony4575

They did for a start - I got less racing heart and palpitations. But then they come back worse and so cardiologist just give me larger dose. But that made me have chest pains.My HR was going down to below 40. I went down to lower dose - no chest pain but still racing heart. But that is how he left me and that is why my hubby brought the Kardia to see if we could prove something was going on.

Peony4575 profile image
Peony4575 in reply to Anxiousarabella

It is really frightening having palpitations . I asked because when I was put on bisoprolol after 1 episode of AF after taking an anti inflammatory it gave me palpitations I didn’t have before , variously SVT, atrial tachycardia, sinus tachycardia ectopics. I changed to atenolol and in the withdrawal process am getting some sinus tachycardia but the rest settled down. If you see a cardiologist it might be worth asking if they aren’t helping is it worth slowly coming off them . You do need to get your possible AF looked at. I had one reading like that and my cardio said it wasn’t it was atrial tachycardia and ectopics .

Anxiousarabella profile image
Anxiousarabella in reply to Peony4575

I got put on metoprolol after the first episode which I had at work - I was quite happy working when all of a sudden my heart went racing and I felt really strange as if I wasn’t there and I had pains all in left shoulder and down left arm. Ambulance was called and my HR was over 200. They kept me in overnight and then put me on the betablocker but gave me no explanation. Few weeks later it happened again but not so bad. I have never felt right since I been on them - always tired - no energy at all. Can’t seem to exercise anymore. I feel like the last 5-6 years that I’m not me anymore. I’ve had various episodes and as I said they put dose up but my hr goes right down and then chest pain starts. They have changed me over to Atenolol now - and that seems a little better but obviously I still get the episodes so don’t know whether it is a waste of time being on it or not. Would my HR go back to being over 200 in an episode or does being on them help as it only seems to go up to about 130-150. Sorry for going on Peony!

Peony4575 profile image
Peony4575 in reply to Anxiousarabella

You are not going on at all . It’s very worrying . Personally I would insist on a cardiology referral and have a good discussion with the cardiologist about your options. For some of us beta blockers can really drag you down and ruin your quality of life and I would explain that and ask what your options are . I am not qualified to advise you on those you do need to see a cardiologist as GPS aren’t experts either and it is you who is having to live with the situation. Ask what it is you have .Sounds like it may be SVT. Ask do you have to be on the beta blocker all the time or could you just take it when you have an episode ? Might be a possibility depends on how frequent they are. But please don’t suffer in silence

Anxiousarabella profile image
Anxiousarabella in reply to Peony4575

That is really good advice Peony - I am going to try and get a referral and hopefully get sorted!

Polski profile image
Polski in reply to Anxiousarabella

The purpose of a beta blocker is to keep your heart rate down. Too high a heart rate is bad for the heart. There are different ones though, which are likely to have fewer side effects. I found Nebivolol was better.

Anxiousarabella profile image
Anxiousarabella in reply to Polski

Yes I understand that Polski but the dose they was giving me was making it too slow and giving me chest pain so I can only be on a very small dose

Polski profile image
Polski in reply to Anxiousarabella

Ask to try a different one.

Finvola profile image
Finvola

My GP was happy to look at my Kardia printouts but I had several, all showing AF. Sometimes the Kardia will report possible AFib in the presence of frequent ectopics (my old one did anyway).

If you want, you could post a bit of the trace here and get some suggestions as to whether it is AF or not. Otherwise, Kardia can analyse your trace for a fee - £5 I think.

Anxiousarabella profile image
Anxiousarabella in reply to Finvola

Thanks Finvola, I will show my GP and see what he says and maybe sent to the Kardia Drs - I didn’t know I could do that.

Hi arabella, going to miss off the anxious bit, we’ve all been there! 😉

Obviously we do not know what you know about AF but there are a few different types of Arrhythmia of which AF is only one, but it is the most common. The only accurate way of establishing if you have AF is to have an ECG at the time you know or believe you are having an episode. The problem is episodes rarely, if ever occur to order. This is why the Kardia is so helpful. However, using it to make an initial diagnosis requires more knowledge than certainly we have and probably most GP’s. There are two types, the single lead is the most commonly used at the moment costing around £100 and the more sophisticated and more expensive 6 lead which, I believe, can determine various arrhythmias. Assuming you have the single lead, which I have, after a recent update it registers Tachycardia, but I believe “possible AF” relates to other arrhythmias but the chances are it is Atrial Fibrillation so initially, they ought to be professionally interpreted. Sorry it’s a bit long winded, but I think should be aware. As Peony has said, reports can be sent to Kardia for a small fee, and Cardiologists can make the distinction too so it will be a very helpful aid. If your GP is happy to receive Kardia reports then all should be fine and I’m not sure there is any point in waiting. If you have one, send it. Have they spoken to you about anticoagulation because that could be the most important issue which could affect you. If you click on the link below, you will be able to access lots of helpful information about AF......hope this helps.

healthunlocked.com/afassoci.........

Anxiousarabella profile image
Anxiousarabella in reply to

Thank you Flapjack. I will certainly show my dr and see what he says. I do have the single lead one. My dad has AFib - his only got picked up when he went in hospital to have an op. I will certainly have a look at the link and have a good read. My GP has never suggested anticoagulant. I did get put on a mini aspirin when I had a suspected tia - but stopped when found out it wasn’t.

in reply to Anxiousarabella

I don’t want to sound alarmist, but it is important to understand that AF can significantly increase the risk of having a stroke as I’m sure you probably know and for several years, aspirin is not recommended because it can increase the risk of a stomach bleed. If you are not familiar with this, you should check out your CHADsVASC score which you will find in the “Atrial Fibrillation” section found in the first link........

Anxiousarabella profile image
Anxiousarabella in reply to

Ok Flapjack - I will check that out. I did know about the stroke risk, which is why I want to get diagnosed properly if I do have it.

Peony4575 profile image
Peony4575 in reply to

You do know that while aspirin increases the risk of a GI bleed DOACS significantly increase the risk of GI bleeds, intracranial bleeds , renal bleeds and if god forbid you were in a major accident you d be in big trouble. I only mention it because you make it sound like aspirin is a risky product and DOACS are safe which is far from the case

in reply to Peony4575

I was only saying that Aspirin is not recommended for patients with AF and providing information on how to access AF Association information about anticoagulation. Please don’t turn this post into a debate about the rights and wrongs of the options available......

Peony4575 profile image
Peony4575 in reply to

You had already done that

in reply to Peony4575

Hopefully we can agree to disagree on that comment......perhaps you hadn’t noticed that Arabella had said she had previously taken aspirin which is now universally avoided for AF and that I have not made any references to any medication and that includes DOAC’s

Peony4575 profile image
Peony4575 in reply to

Indeed we will have to

Kardia never says “you have atrial fibrillation” it always says “possible atrial fibrillation”. Whenever I have had a “possible atrial fibrillation” result, this has been confirmed by manually checking the pulse- I have never known the device to give a false positive.

A GP or cardiologist should accept a reading from Kardia as evidence (the device is recommended by British Heart Foundation) - it can be read by the GP just like any other ECG. The GP should, of course, conduct a full 12 lead ECG at the surgery. If you have PAF, the ECG at the surgery may not pick anything up, hence the importance of conducting multiple Kardia readings and saving them, For £5, AliveCor will conduct an analysis, which would be additional evidence for the GP.

Anxiousarabella profile image
Anxiousarabella in reply to

Thanks Samazeuih, that’s what I wanted to know. I thought if it was definitely AFib then it would say that but if it comes up possible each time - then that makes sense. I have had several ECG at GPs and at Hospital but nothing picked up at the time. I think it probably would be the PAF as I don’t have episodes that last long - the longest episode I have had is about an hour. Often it wakes me up in the night and I try to control with breathing exercises. I do have mild sleep apnea so maybe that has something to do with it. Thank you for the advice.

in reply to Anxiousarabella

If the episodes are at night- nearly all of mine are- that suggests it is vagal PAF, detailed here:

a-fib.com/faqs-understandin...

You mention sleep apnea- it is possible that if that were treated it could resolve or improve the isssue.

Anxiousarabella profile image
Anxiousarabella in reply to

I get most at night but sometimes in daytime. I went for a sleep study and they said my sleep apnea was only mild so they decided not to give me anything for it. Thank you for the link - I will have a look.

4Laur profile image
4Laur in reply to Anxiousarabella

Yes also get a referral for a sleep study as sleep apnea plays a big part and stresses your heart tremendously.

Cally53 profile image
Cally53

I would ask your GP to refer you back to a cardiologist and ask them to mention in their referral that you have a kardia monitor, which has registered you as having possible af. It was a cardiologist who advised me to get my kardia because each time I wore a monitor or was hooked up to an ECG machine, they showed absolutely nothing. I did/do have af and have since had an ablation. You could also email the reading to your GP so they can attach it to the referral.

Anxiousarabella profile image
Anxiousarabella in reply to Cally53

Thank you Cally - I will do that. Just hoping I can get in to see my GP with things as they are!

Cally53 profile image
Cally53 in reply to Anxiousarabella

Let's hope so, even if it is a telephone consultation.

baba profile image
baba in reply to Anxiousarabella

You could email the Kardia pdf to your GP,(ask reception for the email address).

If you have put a password on the PDF you will need to give that to the GP.

Also insist on referral to cardiology.

Anxiousarabella profile image
Anxiousarabella in reply to baba

Thank you Baba - I will do that.

Poncegirl profile image
Poncegirl

I hope you have a good cardiologist. Let the Doc know all your systems. I didn’t even know I had a problem, got up in the middle of the night to use the bathroom passed out got 6 stitches in my lip. Afib and svt.

Anxiousarabella profile image
Anxiousarabella in reply to Poncegirl

I don’t even have cardiologist at moment as they discharged me ages ago. I’m going to try and get re referred. That sounds awful - hope you are sorted now so that sort of thing don’t happen?

Poncegirl profile image
Poncegirl

I live in Florida. Had a cyroablation in august at Mayo. No more meds and not one event. My dr sent me to Mayo in Jax. The best.

Anxiousarabella profile image
Anxiousarabella

That sounds good - so glad you have got sorted. I live in a rural place in UK. Sometimes you can be lucky and get a good Dr but often they don’t seem to listen lol

4Laur profile image
4Laur

Good day🙋🏻‍♀️I would definitely arrange appointments to see a reputable Cardiologist and Electropysiologist to get evaluated and see what your options of treatment are. Also, please watch what you eat and drink. Omit processed-artificial food/drinks and caffeine. Drink water, herbal Caffeine Free teas- cold or hot, (NOT decaf). Get enough sleep etc. just overall try to keep to a healthy way of life. Good luck, stay safe!

Anxiousarabella profile image
Anxiousarabella in reply to 4Laur

Thank you for the advice 4Laur. I have been looking at plant based diets but think I am going to change gradually. I’m glad you said about decaf as I thought they was alright - I have been drinking a fare bit of decaf coffee so I need to try and get my herbal teas out.

Bennera513 profile image
Bennera513

Hi. I can relay my own experience for what it's worth. I too suffer from benign ectopics (PVC's and PAC's). Over 20 years they've progressively gotten worse despite on again - off again atenolol. So bad that my EP reluctantly agreed to let me trial Flecainide. Ultimately we agreed to keep it as Pill in Pocket for the worst ectopic storms. One afternoon I was experiencing a really bad storm (contstant palps it seemed). My Kardia mobile returned 'Possible Afib'. I immediately took the Pill in Pocket thinking it was still just a palp storm but calmly went to ER where within 10 minutes I had a clinically approved diagnosis. Yep, Afib. This changed many things. It then resolved before I was 'seen' and after only 2 hours from taking the Flec. That was Sept 2019 and it hasn't returned. However, getting the official ECG tape made a lot of difference. I now have a record of my morphologies for future reference when (?) it returns. And my EP is more onboard with ablation should this become 'problematic'. In addition, the meds and PiP, etc. are all set when and if because we know it works. With a confirmed diagnosis you would likely receive more dedicated and precise treatment. I would definitely push and inquire with your Kardia reading mailed to whomever will listen. Good luck and hopefully it's just a one off recording that Kardia didn't know what to do with....:)

Poncegirl profile image
Poncegirl in reply to Bennera513

I finally resorted to the Apple Watch. I have the Kardia but you need to stop get it out and use it. The watch you just press the stem and do an ekg. Have a total record of the events on my phone. If you go into Afib it will alert you.

Anxiousarabella profile image
Anxiousarabella

I’m glad you managed to get it diagnosed so that you have everything in place. Fingers crossed that if you have not had anything since Sept 19 that you won’t get it anymore. I will definitely try and get referred back to a cardiologist so that I can show them and see if they can help. I don’t know anything about flecainide so don’t know if that is anything that might help me.Thank you for replying 🙂

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