Been reading with interest but this is my first post.
First AF episode May but was under control with bisopropol until end of October then ended up back at A and E. Had echocardiogram which was all absolutely fine but no cardiologist appointment on NHS! So anxious with it all I’ve ended up going private to talk through what on earth is going on.
After the October episode I needed to up bisopropol to 10mg a day but it made me feel worse so changed to Flecanaide with smaller dose of bisopropol.Since then can near enough feel things going on in my heart most of the time. My question is how do you all know if it’s ectopic beats, AF or any of the other irregularities you speak of. I literally have no idea.
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Dogmad2
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Hi Dogmad, it’s so saddening to read of people literally left to worry and not knowing where to turn. It’s hard to feel we’re being cared for properly anymore.
The good news is your echo was fine, so your heart is structurally sound. The short answer to your question though is there is no sure way for you know accurately what the arrhythmia is without further tests, usually via a holter monitor which would run a 24/48 hour trace of your heart.
The way forward might be to discuss your new symptoms initially with your GP and they would be able to give you their professional opinion on your change of symptoms. Maybe this will simply put your mind at rest. If not, they would be able to tell you as how long the current NHS waitlist is. You could then make an informed decision where to go from there, taking into account whether a revisit to your private cardiologist might be a financial option. Wishing you all the best.
I have had a 24 hour ECG twice. First one following my first a and e visit showed only the odd ectopic and the second one after the October episode was reported as ‘all under control.
A holter is a wearable device you keep strapped to your body. It records a continuous ECG. Is this what you had in October? And I infer your symptoms have changed since then?
Invest in a Kardia device . At least you'll have some idea of what's going on. I've found mine invaluable. Not easy to get advice from cardiologists these days it would seem.
Same happened to me, I had the watch to monitor my walking during the pandemic and two months in had an alert for signs of AF detected. Once you know you have AF you can and should turn the alerts off and run it in the alternative mode with AF History enabled. Enabling AF history turns off the alerts and gives you an indication of how much AF you’ve had over a week. AF history may not capture all the AF so is not that accurate, I tend to ignore it now. The AF alerts can also miss episodes of AF and may not alert you. The ability to run an ECG when you feel something I think is invaluable and what you maybe need to do. My advice would be to enable AF History and pay little attention to it and then just use the ECG when you feel something.
As a very experienced Af er I can tell whether I'm in AF or experiencing ectopics but it's good to have a read out from my Kardia to confirm or send a print out to whoever.
You say that you can't tell whether you are experiencing AF or ectopics. AF is an irregular irregular beat. I liken it to morse code. It is normally fast to very fast but not always. With ectopics, generally, you may experience a feeling of a missed beat and then a double beat to catch up. I find my rate quickens with ectopics as well. We are told that these are harmless and try to.ignore but they can be very troublesome to some.
Yes, I have been taking Warfarin for over 20 years. No problems.
I take Bisoprolol only when I really have to as it interacts with another drug of mine. It makes me very lethargic and frankly does very little to lower my heart rate. It seems to be the default drug used by A&E should you have to present there with fast AF!
Hi, can't help but just wanted to say I'm in similar position as in newly diagnosed by GP following 24 hr ECG in July. Still waiting for telephone cardiologist appt and like you have no idea how to tell anything apart. You are not alone and it is a bit unerving to feel like you're just left to get on with it
A Kardia will usually be able to tell what your heart is up to and is small and simple to use with a smart phone. It was suggested to me by the EP we saw privately after the lowest dose of Bisoprolol proved too much for me. After I’d sent him a reading of an episode, he sent a prescription for Flecainide to my surgery which I took as a PIP at first but later regularly and since taking 100mg twice daily I have not had an episode for almost a year about the time I caught covid when an extra pill stopped it in a few hours. Of course, we are all different but it is fun to show others too and has certainly helped me.
Hi and welcome - could I ask who prescribed Flecainide? I ask as it is normally a drug only prescribed in secondary care ie: hospital consultant unless you have an exceptional GP who is also cardio trained or saw a cardiologist in A&E? Are you taking Bisoprolol alongside?
Only an ECG will diagnose AF or ectopics - that’s why the kardia is SO useful.
I think you did exactly the right thing in going for a private consult and the sooner you arrange that the better. I had to use this route to get a good consult over 10 years ago as the wait to see a cardiologist then was 6-12 months - I am sure it is MUCH longer now for most. Having said that - GPs should have enough information for initial management, trouble is they don’t have the time to sit down and talk you through - but that is why the AFA educational series is SO helpful to newbies - link below and know you can phone them. Having good information will also inform your questions for your eventual consult with specialist.
In some ways you can be reassured that the wait is long as there is a triage system which will identify people who need to be seen very urgently and AF is not considered immediately life threatening when rate control is good.
I would also be in favour of Kardia - simply to gather information for your consultation which will inform your consultant as to possible treatment paths.
In the meantime do all you can as regards Lifestyle factors to increase your health and fitness and read everything you can get hold of as to how to manage AF.
I seem pretty much as you describe yourself to be and can sympathise entirely. I have also had an ablation for atrial flutter in 2019, aged 65, which, I suppose, started this whole thing off, although I have had plenty of ectopic beats before that, and, indeed since my thirties, .
It's a frightening time for you and, now and again, can be a pretty terrible one. I strongly suspect, however, that, like me and many others, you'll be entirely okay and find yourself living with palpitations and arrhythmias yet with life going on as ever, even if coping with more spells of "heart anxiety" and regular palpitations. Like me, you'll likely find these spells mysteriously waxing and waning, even sometimes disappearing for long periods. Mostly, mine are ectopic beats, sometimes occurring frequently and in runs; occasionally I do have spells of AF.
Like you, I went to see a cardiologist privately for reassurance and had an echocardiogram and even a stress cardiac MRI. As with you, all these proved clear: the "plumbing" was healthy; but the "electrics" were more dodgy. My heart, for whatever reason, just decides to start palpitating, giving me a sense of its beating much more strongly and sometimes irregularly with thuds and, of course... anxiety. Sometimes, too, I get chest discomfort, even radiating into my back area and lower left rib area. It's always worrying, but my doctor has reassured me that I am okay.
Over that time, I have bought myself an Apple Watch, a 24-hour Wellue AI ECG monitor and a small Wellue handheld AI ECG monitor. I once owned a Kardia, too, but sold it having become frustrated with paying a monthly fee and getting "Unclassified" too often, hence the purchase of the Wellue devices after several recommendations here.
I seems mad to me that there’s no cardiologist appointments. I even rang and they said I was discharged and my Gp would need to refer me back if needed.
I am slightly less anxious but my nature is ‘I need to know all the details’ and know what these funny heartbeats are’ etc and have the opportunity to ask questions hence the private appointment.
Hopefully as you say I’ll get less and less anxious
I also take 10mcg of bisoprolol per day and was told that this was the maximum dosage. So far it has worked for me but like you, after the echocardiogram I was never given another cardiology appointment but discharged to the care of my GP. They do however pay a bit more attention to me at the surgery now. I do have panic attacks at times which can present as AF symptoms but am learning to handle them before calling an ambulance. Good luck.
I had similar, saw cardiology said heart too slow , I was only on 2.25 twice a day he said halve it , so I did but couple of years and atrial flutter, so had Ablation July this year, two weeks later was in A and E , pulse was 46 advised stop bisoprol, emailed cardiology he agreed, pulse now mostly 64 , I'm happy, good luck for 2024 , I'm 80 still pluming doing shower and bath resealing lol
Hi, Well, you don't know if its ectopic beats, Afib or any other rhythm without an ECG. You cannot diagnose it yourself on how you feel.
I am in constant Afib 24/7. You could get a cardio watch, but again you need a medic to make that sort of diagnosis...A cardio watch is of no use to me being in Afib 24/7 what is it going to tell me I don't already know?
I would be more inclined to see your GP and ask for a proper cardiology referral. I presume in your post your medication was changed by the doctor you saw ?...A few folks if they are not happy with their meds have decided to change them themselves!!!...Not a good idea and inherently dangerous....All the best
I didn't want Metoprolol as I had had it prior years earlier for hypertenson.
The public Endocrinologist (Dr on Stroke Ward) wrote in her report that I could reduce the 24.75 x 3 daily. It made me breathless, no energy and fatigied on any exertion.
A 24-hr monitor showed pauses at night!
Dr wouldn't change me to another BB.
Finally at 1 yr 4 months I saw Hospital H/Specialist. An ECHO showed abnormality so NO procedures or anti-arrhymic meds. She changed me to Bisoprolol and said it was better for AFers.
I managed this new drug and her report said to increase as necessary.
But left with uncontrolled H/Rate Day 156.
Locum Dr directed me to a private H/Specialist. He introduced CCB Calcium Channel Blocker. It saved worsening of my heart.
I manage my health.
I manage my thyroxine up or down to level my TSH.
Dr won't change you to a different med. But you should manage dosage if you feel it necessary.
Just be referred if not working. Or go private for a speedier process.
To keep us out of A&E carefully evaluating our meds using our monitors make us experts using the experimenters models. We have an ECG at our clinic and I ask for it to monitor me.
I found I was in a similar position when I was first diagnosed but it was before covid and I did see a consultant. However he didn't take my anxiety into account so I made an appointment with a private consultant and from there had an ablation. It seemed the only way to make myself heard at the time. I use a Kardia and wear an apple watch now.
The cardiologist I have seen privately a couple of times has recommended managing it with medication if possible but so far that doesn’t seem to be working.
No, my ablation was done on the NHS but put forward by the private electrophycisist. I'm still on his books in case something changes, and I have a yearly review now with him. I'm still on medication after as the ablation failed but my Af is so much better now. I couldn't;'t afford to have a private operation.
It is also diagnosed as rapid or slow H/R persistent.
Or
Come and Go. Slow or fast AF H/Rate.
The thing is some feel it and others dont.
Try not to worry. If your H.Rate at rest is over 100 or under 60 H/R you are not controlled. ? wait it out, or have pip pill in pocket at that time for high rate.
I have never been to a&E here in Z except for the stroke and I did not know that I was suffering AF prior. However my rapid and persistent AF H/Rate was due to thyroid cancer seen on a carotid artery scan. My symptoms were excessive uncontrollable sweating, stopping on exertion and little energy as a result. It was 4 months till thyroidectomy with the endocrinology arguing that I had to wait 6 mths after the stroke.
I was left with no followup after embollic stroke!
I struggled on Metapolol with uncontrolled AF. But couldn't feel heart symptoms much.
Had a St John's Home Alarm. Still did not think to ring it. Dog with me at home.
Finally at 1 year 4 months I demanded to be referred to Public Heart Specialist who had me Heart Echoed, ECG and after appontment 24-heart monitorered.
The Echo showed an abnormality.
At 186 H/R Day on Metoprolol which I refused to have, I was given it anyway. Hospital guidelines for everyone who has a stroke!
A change to Bisoprolol showed a small reduction in H/R Day of 156. Still uncontrolled whilst the Dr increased it up to 10mg.
That's what Drs do. Dont change med just increase as only H/Specialist can change the med.
Directed to go private because H/Specialist wouldnt see me.
So you did the right thing going private. But it seems you are still not content. You could get the latest uptodate monitors. Which I never bothered with.
The introduction to CCB Diltiazem 180mg - too much and reduction of Bisoprolol 2.5mg and separate the two different blockers to Diltiazem 120mg AM and Bisoprolol 2.5mg PM CONTROLLED my AF and h/R
immediately 88-96 but I lost weight 3kg now 6kg and 60s day H/R now is normal on the meds regime.
Changed in my diet to sour Dough Bread and A2 milk. I think helped.
So diet for overweight, correct least meds and worry free as much as you can will change your AF. Its just working out what helps you and perhaps pointing to a trigger.
All to do with assisting oneself.
Triggers can be anything from thyroid problems, to too much exercise (extreme), to anxiety, alcohol, smoking, age, big meals etc.
My heart rate night is 47avge and never changes now 3 x 24hr heart monitors! But Metoprolol gave mr pauses.
Everyone has there stories and some will say my mother had it and another sibling.
I've not worried about it, the stroke out of the blue and the discovery of cancer did that. I'm waiting formy heart to heal naturally but meanwhile I have these heart meds.
The last operation - 3 since stroke - not heart - leads me to solving health. I am recovering R Shoulder repair and it is such a relief to finally have that done and the end to ops.
I've been discharged from outpatients cardiology last month. So I depend on meds.
I measure my BP and H/R by my micolife BP monitor twice month now.
I'm 4 yrs 3 months from stroke, almost 4 years thyroidectomy, controlled and accepting my lot.
I agree with Silky57. Ask to see your GP, and request a Holter monitor. I managed to get one arranged very quickly by refusing a prescription for anticoagulants until they went through the proper proceedure.
Obviously, the temptation in these pressing times is simply to write out prescriptions without going to the effort and expense of carrying out the required tests first. But if you're a 'difficult' customer like me, then it is possible to get the tests commissioned.
Of course, the whole thing was facilitated by a private company on behalf of my local hospital, but it did get done. They sent the monitoring device to me in the post, I followed the simple instructions, then the company sent a courier to collect it once the test period was complete.
So, I'm now further forward in knowing what is going on inside me, and informed decisions can now be taken instead of guesswork, which causes unnecessary worrying.
Hello! Think I may be your girl! I’ve had experience of AFib (very symptomatic) ectopic beats and -recently- atrial tachycardia, so please try to describe for me, exactly how you feel?!
By the way, I really do sympathise with you… horrible, horrible feelings.. all of them! 😞
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