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Atrial Fibrillation Support

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AF frustration

TAstar profile image
25 Replies

Good morning,

My husband had a NSTEMI heart attack in June of this year and his recovery has been slow due to repeated episodes of AF, he hasn't had an official diagnosis yet as the aftercare has been very limited and he hasn't seen a GP or consultant since having his stent fitted.

He had an episode on Wednesday evening which lasted over 6 hours and leaves him exhausted for days after. His heart rate isn't sky high, less than 60bpm due to the meds he is on, but it feels really uncomfortable and restricts his activity.

He had a heart rate monitor fitted on Friday and of course nothing happened to his heart rhythm, despite his best efforts to try and trigger it.

He feels so frustrated, he wants to have a diagnosis and a plan to move forward and get back to work but this reading won't show an issue.

Can anyone recommend a heart monitor that we could buy that will record the evidence needed to show the consultant what is happening?

Thank you.

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TAstar
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25 Replies
Paulbounce profile image
Paulbounce

Sorry to hear this TA.

Many forum members recommend the Kardia - worth a Goggle.

Paul

Kaz747 profile image
Kaz747

I have a Kardia which is great. You can download the readings (as a PDF) and I can email them to my doctor which is reassuring.

Several people have suggested the Kardia, TAstar, and that is seemingly the best choice as it has been hailed by the medical profession as accurate enough to provide a rough guide to whatever is going on. Some medics will also look at data from the ECG app on an Apple watch, but neither is good enough for a firm diagnosis.It's not uncommon to spend years trying to capture evidence of arrhythmias. In my own it took over four years and I've heard of much longer periods. Depressing, isn't it? In the end it was an event monitor supplied by an arrhythmia clinic which provided evidence strong enough for a diagnosis for me, but not of an 'over-the-counter' variety. Other than a monitor of some kind, persistence is your best ally. Just refuse to give up and nag, nag nag, for an intervention, and don't flag in doing so! Best of luck!

Physalis profile image
Physalis

The Apple watch is just as good as the Kardia in every respect It also provides heart rate readings every few minutes, day or night.

Your husband's attacks don't sound like AFib. Why do you think they are?

What meds is he on?

TAstar profile image
TAstar in reply to Physalis

He was told by the paramedic who took him to a&e that he was in afib but his heart race was very fast that time. He takes isosorbide momonitrate 10mg, bisoprolol 1.25mg, clopidogrel 75mg, aspirin, statin and lansaprozole.

Physalis profile image
Physalis

You say "His heart rate isn't sky high, less than 60bpm due to the meds he is on" but it is only the bisoprolol which will reduce his hr and then only by about 10 bpm. I'd better add - IMHO! The only time he was told it was AFib was when his heart rate was very fast.

If he has a hr during these episodes of 60 bpm then there is something else going on. It feels very uncomfortable and stops him in his tracks and then leaves him exhausted for days afterwards. Is that typical of any AF attacks? Mine would go on for a day or more at about 140 bpm but didn't leave me tired at all.

I think that if his heart rate is monitored every few minutes during an attack it might give you some clues as to what is happening.

Buffafly profile image
Buffafly in reply to Physalis

He’s had a heart attack! His circulation can’t cope with the disruption. I get ‘slow AF’ and it still makes you feel tired. Or he could be having frequent ectopics which would have a similar effect. Apple Watch is an unnecessarily expensive piece of kit just to show AF or ectopics.

Physalis profile image
Physalis in reply to Buffafly

As I said, it need not be expensive now. Mine would not be worth the money I paid for it if I was trying to sell it.

If he gets a Kardia then hopefully it will show what is going on. However, it would not give a record every few minutes of his hr over the period of his attack. This could be important.

Buffafly profile image
Buffafly in reply to Physalis

If he took a few 5 minute recordings in a row that should give a good idea I should think. I still don’t think you could buy an Apple Watch and a suitable iPhone for less than £100 🤔

Physalis profile image
Physalis in reply to Buffafly

Well there's an apple watch series 4 on ebay today at £31 plus £3.20 postage. There's still a day and a half to go and I expect it will go for more but how much more. I'll let you know.

I bought my iPhone 6 for £89 two years ago. I'm usually very careful with money but my watch was a splurge. For me it was a very good splurge.

Buffafly profile image
Buffafly in reply to Physalis

Wow!

listerines profile image
listerines

Kardia device if your husband feels the afib episodes and then can use the device to take readings (which can then be sent to health professionals) or apple watch for greater flexibility of monitoring if husband does not feel the episodes (though Kardia quite a bit cheaper than apple watch)

Physalis profile image
Physalis in reply to listerines

Yes, it would be useful to know what was going on during these attacks especially as he has a hr of 60 during them.

You can now buy the apple watch series 4 on ebay second hand which is a cheap option if you have an iPhone.

WEULE profile image
WEULE

I hope I am not being out of order here. Atrial fibrillation can be very debilitating as I well know. But have you thought of looking into the foods and drinks your husband has in his diet . It really does make a difference. Unfortunately being stressed over the fact of AFIB attacks makes things worse. I have now been on a 90/10 rule for the past year 90% clean eating and 10% not so good (bread, cheese) . When I eat not so good I notice the difference. I love my Kardia Alive well worth the purchase. Anyway probably of no help hope you get answers soon.😀

TAstar profile image
TAstar in reply to WEULE

Thank you for your reply. Where would we find diet advice? Sounds interesting.

listerines profile image
listerines in reply to TAstar

Try the book The Afib Cure (cure is a bit misleading) lots of good guidance on diet for adibbers :-)

Buffafly profile image
Buffafly

See my reply to Physalis 💜

Ppiman profile image
Ppiman

I have an Apple Watch but last week I bought a Kardia 6L as I thought it might show up more detail. I get occasional tachycardia and afib. My watch picks up these but the Kardia reads in more detail using one extra electrode (if wanted - a so-called “6 leads ECG” but only using only three contact points, two fingers or thumbs and a point on the knee ir ankle)

The newer Kardia 6L does work better in my view. It has picked up and labelled more rhythm disturbances than the Apple Watch, and you can also pay Kardia for an ECG analysis (I haven’t done this). It will also record for up to 5 minutes.

Steve

Physalis profile image
Physalis in reply to Ppiman

Yes, you are right, it does. But again, it doesn't give you a string of readings ever day to see what is going on with your hr.

Ppiman profile image
Ppiman in reply to Physalis

Good point. I’d forgotten that. It’s a shame the Kardia can’t feed into the Apple Health app (or maybe it can?).

My symptoms are to get tachycardia and palpitations, out of the blue, but not too fast (90-125) thankfully. My doctor told me a 14-day Zio monitor I had showed “fibrillation like activity”, but the Apple Watch more often reports only NSR or fast heart rate. The Kardia seems to be more like the Zio and reports “afib” or “unclassified”.

Steve

Electricblue1 profile image
Electricblue1

Hi there , don’t know if this will help but I wear an Apple Watch to keep an eye on my heart and you can view your heart activity on your phone,Hope things improve.

momist profile image
momist

+1 for the Kardia - I would never want to be without mine. I had a smart watch once (Withings MoveECG) which worked just as well, but the build quality and battery arrangement was poor and it didn't last into the second year.

Snowgirl65 profile image
Snowgirl65

After my ablation in April, my EP subscribed me to a Kardia device where I would take a reading every Friday, or whenever I felt my heart was acting up; the results were sent directly to the Arrhythmia Lab of Cleveland Clinic where my EP was able to review them. Perhaps you can buy one of the devices (I got mine on Amazon) and have a similar linking-up with your husband's doctor.

Alphakiwi profile image
Alphakiwi

A lot of people arereally suffering from the side effects . I was one and now off them and finding the fitted pacemaker and no meds except blood thinner.s is getting better every day. Im working on building my strength with walks now up to 8k every 3rd day and shorter in between.. im 79 and have an emay portable ECG monitor which i dont need now as the arrythmia has stopped. I now use a polar watch so as to keep my eye on .my heart rate which i keep to 105 as much as.Im determined to be back biking again.

What tabs you on ?

TAstar profile image
TAstar

Thank you for all of your comments and advice. We bought the Kardia 6L and sent the readings to the cardiologist but she said it didn't show anything and the machine didn't say he was in AF. The tracing looks all over the place but we don't know what we are looking at. He's now waiting to have a loop recorder fitted to capture what's happening. This is really getting him down now, it's happening without warning or triggers. He was sat in the chair yesterday and it came on. He's not been able to return to work since June, will stop getting paid in 3 weeks, can't plan anything as it's so unpredictable. If it's not showing as AF then what is it? Sorry for the rant, it's just so frustrating not being able to help him.

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