Plagued by nocturnal ectopics. - Atrial Fibrillati...

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Plagued by nocturnal ectopics.

Samazeuilh2 profile image
29 Replies

For the last eight or nine days I’ve had more ectopics than usual, often at night when lying on my back or right side, but also during the day. Sometimes the pulse feels very weak, almost imperceptible. Sometimes the ectopics are very persistent, occurring every four or five beats. It’s possible there’s some bigeminy. Kardia is not showing AF. I recently stopped taking omeprazole and a magnesium supplement but have now resumed these.I have not been sleeping well recently, waking up every few hours. I fall asleep quickly but wake up several times and it difficult to get back to sleep. What could be driving this increase in ectopics? It’s a change in pattern from the usual. Needless to say, getting an appointment with a cardiologist will be near impossible.

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Samazeuilh2
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Ennasti profile image
Ennasti

I had a similar issue from Nov to March last year. I’m not sure what brought mine on however it coincided with a COVID vaccination. It appeared to kick in within a short time of the vacc but I had also travelled overseas around the same time and had an allergic reaction to mud at a hot springs and came out in all over body fine rash. Then again, neither of these things could have caused it!

Anyway, it took my ectopic count up to over 10,000 a day for several months, most of which seemed to be at night - again though, the night time thing is only my perception. I wonder if it was just that I noticed it more at night. I could sit quietly in bed though reading and not feel them, then lay down and bang! A dancing heart. 😁

I still have ectopics and arrhythmias daily but not like it was during that time. Thankfully I’m not prone to anxiety and I don’t fear my heart skipping around. Plus my ability to sleep is excellent!

Samazeuilh2 profile image
Samazeuilh2 in reply toEnnasti

Yes, your frequency was about 7 per minute which is probably similar to what I’m getting (although I sometimes get 3 or 4 ectopics in succession followed by, say, a minute without any). They seem calmer when I take 10mg of Bisoprol in the morning. What’s new, is getting them every night. My last Covid vaccination was in February so I don’t think it’s that. Did your GP/cardiologist make any recommendations for dealing with them?

Ennasti profile image
Ennasti in reply toSamazeuilh2

No, it’s expected with my condition, and they’re not that concerned about the ectopics. I have bigeminy, trigeminy, triplets and couplets, bradycardia, low rate AF, episodes of NSVT, and a LBBB! I’ll continue to get them and the ectopics are the least of their concerns. As long as I’m not passing out they seem to be ok with all of this happening.

I’m on carvedilol, candesartan and apixaban, but the beta blocker really doesn’t do anything to control them - and it’s not meant to. They’re trying to slow down any damage and changes to my heart muscles (mainly the left ventricle) which is why I’m medicated. Eventually I’ll get a pacemaker - mainly to help with the LBBB and brady.

I’m thankful I don’t suffer with anxiety. It is what it is - I have a heart which often has rave parties and doesn’t invite me!

Samazeuilh2 profile image
Samazeuilh2 in reply toEnnasti

If you don’t suffer from anxiety you are lucky indeed! I think that’s the worst aspect of AF.

AAJJTt profile image
AAJJTt

Hi, ectopics are tough.

I started out 5 years ago with a heart attack (nstemi II ), this was my introduction to paroxysmal Afib (the root cause). Treatment - Flecainide; no episodes for 4+ years.

In the early days, before treatment, ectopics were always the harbingers of an Afib episode and my constant nemesis since. I am very wary of them.

I did suffer badly from ‘ectopic storms’, which drove me ‘mad’, robbing me of sleep. Anxiety just enforced a negative feedback loop that descended into more ectopics. They were investigated by my cardiologist, the burden was actually not that high, less than 3% and he wasn’t overly concerned. It didn’t feel like that though! sat up and alert at 3am, slavishly watching 5+ pvcs on my Kardiamobile trace. Anxiety is definitely a catalyst and an amplifier; getting control of it, is the way forward. I turned to a course of cognitive behaviour therapy and for a period, an evening sedative. This worked for me, it broke the cycle and it all settled down.

CBT - I was always a bit sceptical about the whole area - talking therapies/mindfulness but it did help; don’t ask me how though 😀 The sessions covered how to spot unhelpful patterns of thoughts, feelings and behaviours and techniques on how to deal with them.

I still have ectopics, daily sometimes, my Afib is also vagal in nature and I tend to pick up on ectopics after I’ve eaten. I still have runs of them too, Dec/Jan is always bad for me for some reason and I had a stint earlier this year. They just don’t bother me the same and I know I cannot let them ‘get into my head’. I literally give myself a good talking to - “ Ok, ignore it, breathe in, carry on (or in bed rollover), my heart is not going to stop.” As I mentioned previously , it just breaks the cycle of catastrophic thinking (especially at night ) which descends into anxiety and promotes more ectopics.

- Breathing - good too. LSD = long, slow deep. Inhale and exhale slowly (something like 6 a min) with slight pause before exhale. Filling your belly with air (diaphragm) not just raising your chest and shoulders. You need to persevere with this - 5mins, it’s not instant but just breathing calmly slows down you down, allowing you to relax.

At the moment, life is normal. I am currently in a good period of stability and I honestly feel that I don’t have any limitations - I regularly run, climb, cycle and travel but ectopics are ever present to some degree.

I try to keep to the mantra - calm down, they are doing me no harm but sometimes it still gets a head of me. Very recently, I had an in clinic cardiology appointment and something just tripped. While doing the ECG by heart was bouncing around like ‘a rock in a tumble dryer’. I wasn’t unduly concerned, I’m glad they got the trace too but it was really my own doing. Got a grip and an hour later and my heart was back to normal NSR - 55bpm.

The mind is very powerful.

If you are concerned, I would get an opinion from your GP or cardiologist.

Best

Samazeuilh2 profile image
Samazeuilh2 in reply toAAJJTt

“In the early days, before treatment, ectopics were always the harbingers of an Afib episode and my constant nemesis since. I am very wary of them.”

Yes, that’s one of the concerns. I’ve often been told that they originate in a different part of the heart from AF and are harmless, but on investigation I found they they can be a precursor to AF.

“ I did suffer badly from ‘ectopic storms’, which drove me ‘mad’, robbing me of sleep. Anxiety just enforced a negative feedback loop that descended into more ectopics. They were investigated by my cardiologist, the burden was actually not that high, less than 3% and he wasn’t overly concerned. It didn’t feel like that though! sat up and alert at 3am, slavishly watching 5+ pvcs on my Kardiamobile trace.”

Last year I had a 24 hour Holter and they were within an acceptable range, however I suspect they are more frequent now. Mostly they are not very noticeable. I have, to my surprise, been given an out of hours GP appointment this afternoon, but I’m not expecting to find out a great deal. The biggest worries are that there might be some AF at night which I am not aware of, or that this will lead to persistent/permanent AF.

AAJJTt profile image
AAJJTt

Ectopics being the Afib precursor was before treatment. After I started the daily maintenance dose of Flecainide, the Afib episodes stopped but the ectopics continued, to varying degrees.

As mentioned I have been Afib Free for 4+ years now. I use my Kardiamobile sparingly and have always found its Afib determination to be very reliable. Occasionally ectopic beats can fool it. If you get a number of them in row on a trace it might report Afib. On 6L version I can see the ectopics and make my of determination. Of course, I don’t solely rely on tech, my symptoms have always been distinct (fast irregular HR with RVR and the tell tale chest flutter), I bear all this in mind and make a judgement. This determines whether I need to take my PIP, and to date, I’ve never had too. The current status quo is ectopics but no Afib.

Good idea to discuss with your GP, if are concerned about nocturnal Afib. It might raise the question of your stroke risk and anti coagulation.

At the moment, I am not on an anticoagulant anymore, as I am below the threshold for it.

Samazeuilh2 profile image
Samazeuilh2 in reply toAAJJTt

I have my yearly appointment at Barts in just over two weeks so I’ll discuss then. They did a 24 hour Holter last year which showed the frequency of the ectopics was at an acceptable level, but things may have changed. Unfortunately, I cannot take Flecainide- following a bypass I have to take Bisoprolol. I’m also going to discuss an ablation with Barts.

Ppiman profile image
Ppiman

I get them very regularly these days and they feel more like missed beats rather than the usual ones. What does the trace on the Kardia look like?

Steve

Samazeuilh2 profile image
Samazeuilh2 in reply toPpiman

I took several Kardia readings yesterday and many of them showed Normal. This was because the ectopics are not evenly distributed e.g. a 30 second reading might not show any, but then there could be 5 in a succeeding 30 second reading. The best thing to do is take longer readings, say 3 minutes, then you are more likely to trap them. Of course, you have to look at the ECG manually, since Kardia’s own report (following the ECG) covers just the first 30 seconds of the ECG. I also sometimes do manual counts of the ectopics. It’s all too easy to become preoccupied with them. I’ve had a few this morning, but slept well. I did feel an inclination to belch slightly on getting up, so I’m wondering if they might be related to reflux or suchlike.

Ppiman profile image
Ppiman in reply toSamazeuilh2

I get lots these days along with more regular AF. I bought a 24-hour ECG (Wellue) to catch them which is brilliant, but these days they are so frequent that any ECG would do that. I use my Apple Watch usually as it's always there. They are a real pain and more troublesome than AF in many ways.

Steve

Samazeuilh2 profile image
Samazeuilh2 in reply toPpiman

I’m thinking of getting the Wellue machine which I know you have spoken well of in the past (no pun intended).

Ppiman profile image
Ppiman in reply toSamazeuilh2

Yes - it works well. In my case, as I have a "left branch bundle block", I have come to think that no home ECG is foolproof and will give false results on occasions. The benefit of the Wellue is being able to test over a longer period and to be able to use electrodes rather than finger contact to create a less "noisy" trace.

Steve

AussieHeart profile image
AussieHeart

Hi did you suddenly stop omeprazole? It’s a strong drug and best tapered off over 2 months. Might be a trigger… just a thought.

Samazeuilh2 profile image
Samazeuilh2 in reply toAussieHeart

I did stop it suddenly. I didn’t notice any reflux after, but I had silent reflux years ago. I’ve restarted it now. Your suggestion has a lot of merit to it.

AussieHeart profile image
AussieHeart in reply toSamazeuilh2

I hope my comment didn’t convince you to go back on it. Frankly once off it I’d never go back unless a specialist said I had to, for example after surgery. It was designed to be used short term. I had erosive gastritis post surgery and took 20mg PPIs for two months to cure it. Took another 2 months to taper off and I’ve never needed it again. Most GPs try to tell you it’s needed for life. My gastroenterologist says not true. Dietary changes are a first-line approach. Just FYI

Samazeuilh2 profile image
Samazeuilh2 in reply toAussieHeart

I ve never liked it as there is, apparently, a link with dementia. I stopped it before your post so you are resolved of responsibility! My plan at the moment is to get GP advice on how to come off it which, as you say, will probably involve gradual reduction.

AussieHeart profile image
AussieHeart in reply toSamazeuilh2

Hope you can open this link. Here’s some info to discuss with your GP rxfiles.ca/rxfiles/uploads/...

And this ronnyallan.net/wp-content/u...

And this nps.org.au/professionals/ma...

Samazeuilh2 profile image
Samazeuilh2 in reply toAussieHeart

Very useful-thanks!

Alphakiwi profile image
Alphakiwi

Hi Sam, your story almost mirrors me except your ectopics are more often and sound a bit more gentle. At one time i had them every 10 mins or so and they are big thumps in the heart,I got one as i write to you. They are horrible and i am recording each one this week for when i see my doctor.I have a pounding heart right now and breathing heavy and have a developing headache. I will keep in touch. I have a pacemaker and i have permanent afib. I was supposed to have av node ablation after the pm plant but a new cardio i was assigned to decided i shouldnt have this ,so herebi am 3 yrs down the road having put up with evert drug imaginable.

Colin NZ.

Samazeuilh2 profile image
Samazeuilh2 in reply toAlphakiwi

They are ghastly. The worst thing is that doctors tend to dismiss them as they are supposedly “harmless”. In fact they are often the prelude to AF in my case which is why I’m so wary of them. They’ve calmed down a bit today but they often make an unwelcome appearance in the late evening.

Alphakiwi profile image
Alphakiwi

Same with me. They are not harmless. Gradually they have caused my heart to beat faster when walking . I walked to our gym this morning about 500 m. When i went in i hopped on the walking machine which has a good heart rate monitor on it. It read 136 before i started anything. It straight away jumped to 139. I sat on a chair and started talking in fits and starts then walked slowly home.Im truly excersise resistant and no drugs help and of course neither does the pacemaker. I see doctor on thursday and will be pushing to see the cardio as soon as

Blondie12345 profile image
Blondie12345

I’m having the exact same problems this week and increased the ectopic beats more noticeable at rest

Samazeuilh2 profile image
Samazeuilh2 in reply toBlondie12345

It may be that they are vagal - the conduction through the AV node by is slowed, which affects the timing and pattern of the heart's contractions. I had a lot of them last night for no apparent reason and have only had a few hours sleep as a result.

Barny12 profile image
Barny12

I get the occasional very weak/almost imperceptible pulse thing, too. Any idea what that's all about?

Blondie12345 profile image
Blondie12345

i was told last year mine were benign ectopic beats…?

Samazeuilh2 profile image
Samazeuilh2 in reply toBlondie12345

You should be ok unless they increase in frequency or they start to occur in runs. I was told to watch out for runs of them and any associated chest pain. If they exceed 10% of all heartbeats they are of concern.

Blondie12345 profile image
Blondie12345 in reply toSamazeuilh2

How do you monitor yours? Or any recommendations? It feels like a slow HR but a bit like a flopping fish

Samazeuilh2 profile image
Samazeuilh2

I use various methods. Firstly, you can count the ectopics showing on a Kardia ECG trace. A consultant recommended this and you can email the ECGs to him. A pattern might look like:

_____/\____/\____/\____/\_/\____/\____/\____

You can see the ectopic beat 4th along. You can also check the p waves to make sure you are not in AF.

Secondly, I use a manual counting method. Just feel your pulse then count the number of regular beats until you feel an ectopic. Then start counting again until you get another. So a sequence might be: 33E10E4E29EE50 where E stands for an ectopic beat. In this case there were 33 regular beats before an ectopic beat, then 10 before another and so on. You can then total the number of beats and work out the percentage. You can use this method for about 5 minutes at a time. Record the number of beats on a digital recorder or phone recorder as you will not be able to write down the numbers when you are taking your pulse. Above 10% is of concern as are runs of ectopics.

Finally, the best method is to get a Holter test, but these are not easy to obtain at the moment, at least where I live.

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