persistent afib

[wbekim]

posted before so will keep brief is it’normal’ to have irregular rythmn with palpitations (not rapid hr is generally 90ish) constantly. Still cannot believe this is not damaging heart or leading to hf. The actual afib does not particularly trouble me but the flips and flutters are so horrible my anxiety is through the roof. I have an ILR so hospital knows but I think they only take in to account rate aspect rather than rythmn burden which is literally killing me. Any comments appreciated, not about treatments but symptoms

[BobD Volunteer]

Normal Heart Rate is between 60 and 100 so yours is not high. It may well be that you are experiencing ectopic activity so try to relax and do the slow deep breathing. Use stomach not shoulders and slow to less than six breaths a minute for at least five minutes. This excerise is excellent for stopping ectopics which frequently upset people more than AF proper.

[wbekim in reply to BobD]

Thanks BobD it’s just the burden and length of time these feelings have been going on they make me feel horrendous as well as anxious and can’t understand how others with AFib feel nothing it makes me think mine must be at a higher level and therefore worse

[Lizziedoodle89 in reply to wbekim]

I'm newly diagnosed with AF and this has caused my anxiety to be bad , worse than the flutters etc, I'm not on meds yet unless BP gets higher and af more frequent ,I totally get where you are coming from

[JOY2THEWORLD49 in reply to Lizziedoodle89]

Hi

You are forgetting the rapid heart rate! Mine diagnosed with stroke rapid and persistent.

I had a few flips thursday and friday and I would hate to live with those.

Was it due to the uTI diagnosed given today for last Tuesday or was it the COVID 8 jab last Tuesday.

If you have rapid heart rate u need either BB Beta Blocker or CCB Calcium Channel Blocker - we are all different.

Waiting for a rise in BP? Before med for AF?

I have only one symptom and that's having to stop on exertion. These flips are new.

In AF with high heart rate over 100 you need PIP or stead med for it to smooth it out. 60s heart rate I find is best.

cherio JOY. 75. (NZ)

[Mismerswe in reply to wbekim]

When I was on dialysis 2017 I was unaware I had an ectopic heartbeat until one of the nurses told me. 2018 I had a heart attack resulting in 2 stents no AF then. 2019 I had a kidney transplant and it wasn't until 2023 that AF appeared, I was like yourself rather anxious but I cope with it and I still have my moments. I am 74 with HBP but I have a really good renal team who are in contact with my cardiologist consultant as due to the transplant there are some medications I can't take. At the moment I take Apixaban 5mg and Bisoprolol 10mg for Afib and HBP along with other meds for my transplant. I try not think about Afib now, I'm only too grateful to the medical staff that I'm still here. By the way I'm going to Tenerife in September so no stopping me.

[Cavalierrubie]

Hi, Your heart rate is normal so that is good. A fast, continual heart rate is the one to worry about and can do the most damage, if any. That’s why we are given a beta-blocker. Ectopics make me feel just as unwell as the AF itself and l think many of us experience the same as yourself regarding anxiety. I go as far as to say anxiety is a symptom of AF! and if you relax it does lessen the severity of the attack. I always remind myself that l have had it before, that it passes and it’s not a terminal illness. We are all different and whilst some of us are not aware that we have AF., others can have frightening symptoms. Personally, it makes me feel quite ill and l just curl up in a ball and rest until it passes, but thankfully it does eventually stop after a few hours. It’s best to just sit it out unless you get chest pain, difficulty breathing, feeling faint etc. or a fast AF that won’t stop, then it’s A/E. I can also have either fast AF or a slow AF. That’s this mongrel condition for you. Hope you are feeling better soon and not so worried.

[wbekim in reply to Cavalierrubie]

Thanks for your reply but mine doesn’t pass it’s persistent so goes on constantly

[Cavalierrubie in reply to wbekim]

The more anxious you get about ectopics the worse they can be. I would see your GP, if you already haven’t, to put your mind at rest. The medics are not concerned about ectopics so much, but if you are worried that they will cause harm, or you think it’s something else then you need to be reassured by your GP. Perhaps you need your medication reviewed.

[Karendeena in reply to wbekim]

Why don't you consider ablation? I suffered like you and had an ablation in March after a 12 month wait and constant anxiety that was ruining my life! So far it's the best thing I have done

[Karenjaninaz in reply to Karendeena]

I also had a pulse field ablation April 15 and really glad I did. I was on Cardizem- made my ankles swell and interacted with the prednisone I was taking . I ended up with moon face though I did not have that at that low dose before the diltiazem. Flecainide gave me wind from hell.

After the ablation I’m off those drugs and back to normal. Still taking Abixipan for awhile longer. Will have 2 Zeo monitors yet.

[Karendeena in reply to Karenjaninaz]

What are Zeo monitors? I have just had a 24 hour holter monitor 4 months post ablation.

My EP won't take me off the anti arrythmics yet but I really want to try without them. Maybe he will if I have no episodes before I see him again in December

[Karenjaninaz in reply to Karendeena]

A ZiO monitor is a small plastic oval device, you wear over your chest for a week or 2, which records every heartbeat. It gets sent to a lab, which interprets its findings, and sends them to your doctor.

They are very convenient and much more comfortable than Holter devices.

[Karendeena in reply to Karenjaninaz]

Thank you, not sure if they are available here, are you in the UK?

[Karendeena in reply to Karenjaninaz]

Thank you, not sure if they are available here, are you in the UK?

[Karenjaninaz in reply to Karendeena]

No. NJ USA

[Karendeena in reply to Karenjaninaz]

That explains the difference in technology

[JOY2THEWORLD49 in reply to Cavalierrubie]

Hi

For your info neither Metoprolol (with pauses at night) or Bisoprolol solved my rapid heart rate at 186 and 156. So BBs weren't working for me!

At 2 years 3 months my new Locum sent me to a private well known heart specialist. He introduced CCB Diltiazem.

Within 2 hours I went from 156 to 51 on 1/2 dose 180mg.

Twinked to AM 120mg Diltiazem for heart rate control. Now lost 6kgs and at 2 years and half h.rate is 60s Day and doesn't interfere with my low normal 47bpm avg Night. Perfect

PM BP control 2.5mg Bisoprolol 120-132. & 69 - 79. perfect.

Its always best to have a 24hr Heart Monitor to show how your med is working.

I had 3 in 2021.

cherio JOY

[Cavalierrubie in reply to JOY2THEWORLD49]

Hi, It’s a drag when the drugs don’t work or we can’t take them because of severe side effects. Glad you finally got your meds to work. Trial and error with us all. It would be so much easier if we were replicas of each other - but boring at the same time! Take care Joy.

[JOY2THEWORLD49 in reply to Cavalierrubie]

Hi

Thanx.

Could it be that the hospital heart specialist was stuck because rapid Heart Rate Day but low at night.

When offered her last year I said No thanks that I would travel down to base hospital and saw him Chinese. No ankle swelling, stable on meds 2 years so discharged me from the shelter of outpatients.

No to getting updates on medications etc. Too much.

Well, they know why my stroke happened - Thyroid cancer-AF-Stroke.

Whereas many of you don't know.

It looks as if the cancer was still about for me wanting a reverting heart rate to normal. But the last PET scan seems to have killed off the 2 little bits 8mm and 7mm lymph which should have also been removed at the time of thyroidectomy.

Perhaps suddenly my heart rate will revert. I had better keep an eye on it. Maybe I need to take my BP machine on holiday! ???

Does anyone else???

Cheri JOY. On holiday in JAPAN October. Wheeeeeeee.

[JOY2THEWORLD49]

Hi

Younger I experienced palpatations through worryimg! I wonder if you are!

I did have a few odd flips on day 3 after my last COVID jab No.8.

I did take before and after antibiotic.

Scary stuff.

Take care, JOY. 75. (NZ)

[Buffafly]

Hi, I can understand how distressing it must be for you to have palpitations constantly. I hope you don’t mind my asking, but are you overweight? I am thinking that your heart may be under pressure and being irritated as a result which is why it’s so ‘jumpy’. I can hardly feel AF at all unless I am lying in a bad position though frequent ectopics are a different matter. I hope your recorder shows something helpful ❤️‍🩹

[Rainfern]

When in persistent AF I found it hard to know the difference between ectopic beats and the ongoing flips, flutters and irregularities of AF. Since my ablation I have occasional short runs of ectopic beats and think it was these that most likely set off anxiety. I found the deep breathing and relaxation were most helpful and still practice these most days.

[Silvasava]

My Afib is rythm not rate. I suspect I've had it for many years but it wasn't discovered until after I had a stroke which also revealed DCM (dilated cardiomyopathy) it's controlled by a small dose of Nebivolol and Digoxin along with all the usual heart meds. My heart rate is usually in the low mid 70's I get breathless and tired easily but that's the DCM

[secondtry]

Maybe try humming to get back to NSR. My more mild 'flutter' is stopped by this method. I mentioned it to my cardiologist last week and was surprised he didn't raise his eyebrows and instead said 'Oh yes, we call that a modified valsalva (apologies for spelling) move.'

[wbekim in reply to secondtry]

My afib is persistent

[pip_pip in reply to secondtry]

What is this ?

Phil

[Ppiman]

I'll post a trace from a recent ECG to show you that an irregular rhythm needn't be AF, fast or whatever. My symptoms seem to match yours: lots of ectopic beats (every day, but several days with not too many and some days with lots); AF itself much less frequently (slower these days, 85-130bpm, maybe every two weeks, sometimes more).

When it is at its worst, which can be often (I am going through a calmer period just now - fingers crossed), it is hard to cope with.

I was recently prescribed 50mg flecainide for both AF and ectopic beats. I took just one dose the other week and had a day free of troubles; indeed several calm days followed. I didn't take more as it caused an unusual feeling heavy beat which worried me.

I have been put on the waiting list for an ablation and have been told that stands a good chance of success to stop both AF and ectopic beats.

You clearly struggle with anxiety related to this. I, again, am similar, but since finding out from a recent MRI that my heart was in good shape and much as it was 5 years ago, this is much more under control. I have been told that arrhythmia and ectopic issues in the atrium, whether AF or not, will not normally cause damage to the heart itself. Keep that in mind. It is, I am told, sustained tachycardia that can, over time, damage the heart, both valves and ventricles, hence the need for rate reducing drugs to keep this in check.

Steve

ECG showing multiple ectopic beats.

[Dastardly]

Hi there,

If you have persistent AF, then it should show up on an ECG. Have you had one recently? I recently went to a private cardiologist and my ECG showed a heart rate of 143. I didn't feel it as such, just seemed a little bit 'off'. My heart rate on my Omron BP monitor at home varies from 75 to 95 but the cardiologist told me to ignore that as these machines cannot keep up with the varying irregularities of AF. Come to think of it, I have had lots of occasions when my BP has been taken in hospital and surgeries, but nobody ever mentions heart rate - only SYS/DIA. Anyway, if you have persistent AF, you may have irregular heartbeats a lot of the time. There seems to be no pattern to them, as there seems to be with atrial ectopics. Most of the standard of care drugs for AF seem to concentrate on keeping the blood pressure down so as not to strain the heart. This is what I am on at the moment. Now I have gone private, I hope to be trying some of the drugs that actually treat the AF, although it would seem that some of the side effects are a little 'daunting'

My advice is to get an ECG stat.

[Bigredhear in reply to Dastardly]

Hi,

I am in persistent AF but cannot seem to gauge my heart rate properly, I have a Kardia device which confirms my AF but i am unsure of the heart rate reading, it says 143 bpm but when I use my blood pressure armband that reading says 85-90, this reading was similar to the cardilogists reading when i saw him last and he says i am not in fast AF?

Is there a more accurate way to read the BPM when in AF?

[Buffafly in reply to Bigredhear]

Kardia is the most accurate, a BP monitor or oximeter or fitness tracker are all inaccurate in AF. However your HR is probably not constant. The loop recorder should be giving an overall picture of what your heart is doing. Another thing to take into account is that Kardia records electrical signals but not all of them translate into noticeable pulse beats if they are variable in strength. This may be why you are having palpitations - the strong beats are very noticeable like ectopics. Kardia can also be fooled into diagnosing frequent ectopics as AF. As you have persistent AF I wonder if gentle exercise might help to even out your heartbeats and give your heart something else to do with the adrenaline that your anxiety is pumping into it? Anything is worth a try!

[GinGal in reply to Bigredhear]

Hiya. I'm like you. Persistent AF, slow like yours and with blood pressure & resting heart rates slow / normal-ish to match. By BP is usually around 110-120 / 55-80 and a resting heart rate of about 60-75 though it can be as low as 55-75. So for people like us, AF is more about the heart rhythm than the rate. I don't even know if/when I'm in Afib but if I take my BP just to check it is usually irregular. I've had both a cardioversion and an ablation and both failed. My Cardiologist / Ep is thinking about a pacemaker for somewhere down the track. I am on no meds other than Eliquis, my cholesterol statin and half a blood pressure tablet as a preventative measure .

[Tellingfibs]

Whilst my Kardia indicates my afib crops up only for short periods, about twice a week, it tells me I have almost constant palpitations. A couple of medics have told me they are nothing to be worried about, but I wonder if they have actually heard me say “ almost constant “ ! I notice them more when I am sitting quietly, and so I become anxious. My heart rate is usually in low 60s as I am on a hefty 10 mgs Bisoprolol. This drug was increased because I was feeling dreadful on the few occasions my heart rate went over 100. I felt awful when it was only 90, but a lot of people are happy with this rate. It sounds as though you are like me and can’t tolerate a high rate. So, my palpitations are almost constant but very tolerable at a low rate. Perhaps you could be prescribed a beta blocker which will slow your rate, which in turn could well help you tolerate the sensations you are experiencing - and reduce your anxiety. Remember, you are not alone !

Annie

[Broseley]

I have always had persistent palpitations that became constant a few years ago. Luckily they did eventually stop after a couple of months. My GP said it was nothing to worry about. But it is horrible and made me twitch. I found it difficult to sleep too. Try stimulating the vagus nerve by pressing on the carotid pulse area on your neck (CAUTION, one side only!!). That worked for me sometimes, also holding your breath and blowing into your cheeks. Exercise also helped.

[Jetcat]

I hate my ectopics and missed beats to be honest. At least when I get an Afib episode I know what’s going on, but with ectopics and the like it sends my mind into overdrive.!!😡

[BaileyC57]

I have been in AF since last SEPTEMBER, my heart rate is in the 80's and 90's! I am on a beta blocker and it helps my AF also! I guess there are lots of people with constant AF!

[Jackiesmith7777]

our doctor said if his rate is 100 or under resting it’s fine . My husband is in persistent AF as well . This caused his stroke last year . You can read all my posts to save me re writing . It’s when the rate goes up to 170 is when its scarey as this was the rate Jist before my husband had his stroke which has left him I able to read write and communicate properly as well as right sided blindness

[listerines]

Wondering if your ectopics have improved or if still alot of ectopic burden for you? I can empathize and sympathize as I have had ectopics for about the same time as my AFib started approx 4 years ago, in some cases they seem to go hand in hand. Some days no ectopics other maybe under 100 then other days, for no reason I can discern, they jump into the 1000s and 10000s. When they increase like that can certainly trigger AFib. Have had 3 ablations 2 for AFib and one for ectopics but the search for greater heart stability continues. Hoping your heart is more stable.

[wbekim in reply to listerines]

Think extensive ectopics may have been precursor for Persistent AFib I have now been in for 10 weeks hr seems controlled at under 100 resting but constant fluttering flip flops of heart are mentally debilitating won’t let me have flec due to minor c disease no amiodorone as age 65 and don’t make threshold all agree on cv but can’t get done even privately until end of September think I may have hit the meds draw by then

[listerines]

There are other antiarrhythmics but you would need to discuss with your health care team - can you not be admitted to emergency room and receive cardioversion on a critical basis why such a long wait? (Though CV may not be a long term solution can buy you time for ablation or perhaps change on meds) Hoping for greater heart stability for you