Ectopics Update

[RichMert]

healthunlocked.com/afassoci...

Have seen my Heart Consultant since writing above.

I mentioned my concern that my heart seems to be slowing down by 50% as a result of the Ectopic Beats. The consultant explained to me that when you get an ectopic beat, it only pushes 1/5 of the normal amount of blood around your body therefore you do not feel the pulse although the beat is still there. Well that is how I translated what he was trying to explain.

I have had an echocardiogram which shows that my heart is structurally sound.

Consultant has put me on 80mg of Propanolol a day to slow heart down and to reduce the anxiety that goes with the concern over the Ectopics. Only problem I have at the moment is waiting for the number of ectopics to reduce and the total fatigue I experience when I try to walk a couple of miles which, I think may be a side effect of the Propanolol.

[Autumn_Leaves]

You won’t know how well the medication works until you give it a try. I have permanent ectopics and I haven’t found the prescribed beta blocker (Bisoprolol 2.5mg) to reduce my ectopic burden at all. I can’t increase the dose because of low BP so I won’t know if a higher dose would help or not. I’m waiting to see an EP and the GP has tried to push for an earlier appointment since I’ve produced Kardia readings that show AFib. So I’ll have to wait to find out what the EP says as it’s now ectopics and AFib rather than “just” ectopics

The good news for you is that your heart is OK, although I became well and truly fed up with healthcare professionals sing-songing away about ectopics being “harmless” and “normal”, but is all day long exactly “normal”? I do sympathise. It’s a very long and frustrating slog living with “permanent ectopy” as I call it.

[fairyfeathers in reply to Autumn_Leaves]

hi, I do sympathise with you both. I was very lucky to be offered an Ablation quickly as I have very low BP and all meds a challenge. I had an Ablation 26 Sept 2022 for atrial flutter but unfortunately my etopics are relentless still. I feel Flutter has gone? I have been told etopics are normal and to accept and ignore them. I’ve had a wobbly day today and I had a chat with my arrhythmia nurse who has asked me to go into Cardiology for an ECG tomorrow as he was concerned.?? My GP surgery refuses to give me an ECG and I was told to go to A&E nearly an hour away. I do not feel I need to bother A&E! Perhaps Flutter now Atrial Fib?? I am on Edoxaban 30mg and 1.25 Bisosporol if I need it. I have low BP so meds a problem. My EP is not at all concerned about Etopics so I’m trying to ignore them but I’m so tired. I have been waiting for a Holter device since June 22 but been told it will be another 18 weeks at the earliest before I get one. I do not have a Kardia device as I feel I would be using one too much due to my anxiety issues.

So I send you both a hug as I can understand how you feel.

[RichMert in reply to fairyfeathers]

Ah, 26 Sept Ablation, its far too early to tell what the end result will be. I had 2 ablations 8 years ago and fingers crossed they have never detected AF since. The Ectopic beats are a by product apparently and although they are not worried about it, you cannot help but worry when your pulse is in the 30's. I am told that my beat is still in the 60's but you cannot feel the weak beat which is still present in between, in your pulse. I can sort of go with that but it is the shallow breath as opposed to being out of breath that is worrying.

You really need to wait for the 3 month review but of course you should discuss any concerns with the arrythmia Nurse. I wish you well and feel free to message me at any time. When they tell you to stop taking the Bisoprolol, make sure you do that gradually over a couple of weeks by reducing dose then every other day. You will be climbing the walls with nervous energy otherwise.

[fairyfeathers in reply to RichMert]

thank you so much. I was surprised Cardioligy wanted me to go in as I only wanted advice. I told my arrhythmia nurse if it’s etopics I will accept this and be reassured. I can then get on with my healing. I’m so pleased I had the Ablation and as you say really early days. I have a lot going on with my life at present, poorly husband (heart issues and spinal problems ) and he’s just been diagnosed type 2 diabetes and needing support. Plus elderly doggy that is unwell so I’m sleeping on my sofa so I can look out for him. So now I’ve written that down i am not surprised I’m a little tired. 😀 I am doing breathing exercises and pacing myself. I am so grateful that I’ve been lucky to have had ablation so early in my diagnosis. Thanks for advice re Bisosporol.

[Autumn_Leaves in reply to fairyfeathers]

Oh poor you. Those are big stresses AND trying to recover from an ablation with all that going on. Not an easy situation for anyone. Good luck with your appointment with the arrhythmia nurse and I hope your ECG is fine too.

[fairyfeathers in reply to Autumn_Leaves]

ECG’s we’re fine heart was behaving the 5 mins ECG was being done. I expected this. I’ve been told it will be another 2 months before I know if Ablation was a success. Rest and more rest. They had me in to Cardiology as they do an ECG around about a month after Ablation to check. I was told to expect arrhythmia and days where heart plays up. It’s annoying I didn’t have ECG yesterday as the reading would have been very different as heart doing somersaults 😀. Thanks for your good wishes

[fairyfeathers in reply to Autumn_Leaves]

when I stated ECG was fine I meant no A Fib or Flutter but ECG did show etopics which Cardiology are not concerned about. So I will do my best to ignore these somehow??

[Autumn_Leaves in reply to fairyfeathers]

Yes, that seems so typical. If we have ectopics we should just keep calm and carry on skipping 😜 Easier said than done, isn’t it?

Agree, any of these devices can provoke anxiety and I too am affected by health anxiety. That’s the reason why I won’t be buying into the Zoe hype where you have to wear a continuous glucose monitor and measure your blood lipids regularly. That would drive me round the bend! So I’ll just stick to my regular lab tests and with an hba1c of 4.8% and total cholesterol of 2.6 then do I really need to be hooked up to measuring devices? I totally get the rationale behind them but I’d rather enjoy the mental freedom of not having to angst about these things. As my GP once told me over some non-issue I was angsting over “your body will deal with it”. And that has stayed with me, because I actually believe that with all the wellness hype, the “nutrition” pseudoscience, diet myths etc etc, we end up not trusting our bodies and not trusting our own judgement.

18 weeks is a long time to wait for a 24h ECG but this is post-pandemic healthcare. It used to be maybe 8 -10 weeks in the past, but I had to wait considerably longer this year for mine, and the outcome was much the same as before “only ectopics, la la la”. It didn’t pick up any AF as it’s paroxysmal, hence the reason why I needed the Kardia as the hospital won’t accept my watch readings — but without these devices I wouldn’t know that what I described as “ectopics gone haywire” was actually AF. So in that respect it’s been a very useful tool.

[fairyfeathers in reply to Autumn_Leaves]

I see where you are coming from with the Kardia device. It would certainly help me at present as I could send a reading to my EP. I might have to have a rethink. My GP not interested in my heart issues as I’m under the care of an EP. I do understand this. But my EP said it would be helpful now I’ve had my Ablation if my GP could do an one off ECG when I’m having arrhythmia (GP surgery just 10 mins away) to capture the problem so they could send it thro to EP. But it was a no to this request. The Holter been requested since June 22 and I was told March 2023 now.

I need to take a deep breath and chill as I am my own worst enemy🥲

All the best to you x

[Autumn_Leaves in reply to fairyfeathers]

9 months? That’s way too long. The kardia isn’t 24h so it won’t calculate your “ectopic burden” or monitor you overnight, but it’s good for in-the-moment readings when you want confirmation of something going on.

[fairyfeathers in reply to fairyfeathers]

hi Autumn Leaves. I’m in Cardiology today so will see what happens. When EP did Ablation he put following on my Discharge Notes:

“Frequent bursts of multifocal left and right atrial ectopy which he settled with Flecainide. Challenging CTI line requiring extensive ablation” the Report contained lots of other stuff which I do not understand.

Cardiology seems so incredibly busy and wait times are getting worse. They are so stretched and I feel it will get worse. As for my GP surgery it’s a 6 week wait for an appointment unless you can persuade the Receptionist you need an emergency same day appointment. It’s not the best time to be old with health issues!

I don’t know how I would have coped with my recent heart issues without the support and knowledge of people on this great site.

[Autumn_Leaves in reply to fairyfeathers]

Yes, there are many people here who are very generous with sharing their experiences and knowledge and I’ve gained a lot from reading their posts.

I’m rather scared of cardiology reports. I have to brace myself before reading the cardiologist’s letter to the GP. There’s probably a lot on a full report that I wouldn’t understand and would only give me more to worry about.

The waiting times for cardiology are very bad in my local hospital too The GP surgery does a triage/same day call back consultation which is OK for some concerns but F2F appointments if deemed necessary are shared between the surgery and other health centres, if the surgery is fully booked. It’s sort of OK-ish but as someone who is ageing into the “older” life stage when healthcare becomes more important it really isn’t a good time for it. 😱

Good luck with today. I hope it all goes well

[RichMert in reply to Autumn_Leaves]

Oh, I was exactly where you are with the PAF for 3 years before diagnosis. You can feel the difference in the pulse, if it feels like there is an echo and they are difficult to count because all over the place then probably AF. I insisted they do an ECG early one morning and at 175 bpm and them telling me to calm down because the machine cannot cope with it, I told them to print it anyway. Consultant put a ruler across it and diagnosed AF. I only trust my Consultant now with regards my Heart.

[Autumn_Leaves in reply to RichMert]

With my first episode I asked my husband to feel my pulse and he said “it’s not exactly regular” so that was my alarm bell ringing and I took a reading my watch. Possible atrial fibrillation, it said. If you have a lot of ectopics it’s hard to tell whether it’s very persistent and frequent ectopics or AF.

[RichMert in reply to Autumn_Leaves]

Yes I use to get one Ectopic every minute or so for a six week period but this is beyond funny now. That feeling of your breath being taken away is not good.

[Autumn_Leaves in reply to RichMert]

I pick up between about 3-7 ectopics per 30 second reading on my watch during the stable/just-ignore-it times of the day, but at other times I’m in trigemeny, bigemeny and the like. At first I was having 200-300 a day picked up on my earlier 24h Holter tapes, but now those are the “good old days”.

[RichMert in reply to Autumn_Leaves]

Likewise, 275 per day but last 24 hour Holter picked up 5500 on a good day.

[talipia in reply to Autumn_Leaves]

HI just like you, I have them 24/7. I think they dissappear somewhat when asleep but daytime, all the time. On 2.5mg bisoprolol. Had them on and off for 20yrs, but this time they kicked off in July and since then every day. Waiting to see cardiologist and meantime cutting back on all known triggers (caffeine, alcohol,etc etc). They're not harmless they are a real pain to tolerate and reduce quality of life.

[Autumn_Leaves in reply to talipia]

I used to have the very occasional one in my 20s. Like once a fortnight or something and they’d give me a fright. Then it was maybe 2-3 a day that I was aware of. In 2012 I had a severe respiratory infection that went on for weeks. This was long before anyone had heard of Covid but it had a devastating effect on my health and that was the beginning of the ectopics getting bad. I had to go to A&E in an ambulance with a very high HR that resolved. Possibly an episode of SVT. My first 24h ECG picked up only about 250 ectopics which I thought was bad enough considering it was only 2-3 a day, if that, before this virus knocked me sideways. I also developed neuropathies after that illness. So I fully understand what long Covid patients are describing.

In 2018 I had flu and that was what started off the all day long “permanent ectopy” symptoms. So viral illnesses have been the precipitating factor. Personally, that’s why I will take the Covid vaccine without hesitation. No ifs, no buts. The memory of that other respiratory virus and the ambulance and so on, plus all the neurology tests and scans etc, if I could have avoided going through all that somehow I would have grabbed opportunity with both hands.

I’m wondering if perhaps you may have picked up a virus in the summer that may well have been asymptomatic or something like that. It’s impossible to know for sure why these ectopics have become so frequent and we desperately want to know what we can do to stop them. They are so intrusive. Some people have ablations if they are really bad but having AFib complicates that. It was when my ectopics were several thousand a day for maybe 3-4 years that AFib happened. I think the ectopic burden was the trigger for AFib, in my case anyway. I don’t believe ectopics are benign if they become frequent.

[talipia in reply to Autumn_Leaves]

ha ha good call, i did catch the wretched bug in april in australia, so 12 weeks later the ectos kick off,could well be a connection. I have a bro with long wretched bug and it has wreaked havoc with his ticker. they are a mysterious nuisance.

[Jetcat in reply to Autumn_Leaves]

hi autumn, talking of ectopics I started with them at work this afternoon about 3pm.!!! Got home at 5.30 pm and got the trusty kardia out and They’ve kicked into AFIB.😡 luckily it only lasted 5 minutes.!!! I hate the ectopics

[Autumn_Leaves in reply to Jetcat]

I wondered today if I had a very short run of AF at a time when the ectopics were revving up. I did a quick watch reading. It picked up only 3 ectopics. All the other beats looked normal. So whatever it was I missed it. I set my watch to monitor for AF last week. I still don’t know how accurate it is or how well it picks up AF. It calculates the % of time in AF.

[Jetcat in reply to Autumn_Leaves]

my Fitbit not too good at noticing afib so soon as I got home I got the kardia ecg pad out and it picked it up.!!!

Iv had a good run this last 12 months + to be honest so I can’t complain. I thought the magnesium supplements were helping but Iv had a blip today unfortunately.!!!

I’m trying not to let it get me down but I’m afraid it’s Knocked me back a bit mentally.!!! ( health anxiety etc is on overtime.?) im guna go to bed early and wake with a stronger attitude in morning.👍

[Autumn_Leaves in reply to Jetcat]

I’ve never had an AF notification on my Apple watch and I have no clue what this new background monitoring option is supposed to do. The watch is OK for taking a quick reading when I’m wearing it and I do believe it’s fairly reliable at catching AF when I do a manual trace. It’s a shame these wearables can’t do a 24h or even a 12h recording, but maybe the will in the future when these devices can devote the processing power or memory or whatever to allow for that. Even just 1 hour could be useful in catching these fleeting AF episodes. I’m sure they’re more common than we think. I know that people with those implantable recorders are often surprised they have short runs, sometimes only a few seconds long. when the think they’ve been AF free. Scary, eh?

It’s always a disappointment when it happens, and it does make us more anxious especially when we think we’ve been AF free for a while. Sleep well. Tomorrow is another day!

[Ppiman]

My ectopics have been a bit quieter this past fortnight or so, thankfully. I had one period of high heart rate the other day - the first for a good long time - but other than that, going well enough.

I don't know what happens to bring these things, or even my occasional AF, on, but I am thankful for the relative calm I have had for a while.

I hope your beta-blocker helps. I have never found they do much for anxiety, myself, but some swear by them!

Steve

[Jdgirl030]

hi Rich

Have you experimented with electrolytes? I have gone from having thousands of ectopics a day to single figures. I take 300mg of magnesium glycinate and then in hot weather or after exercise/perspiring electrolyte tablets which have sodium and potassium etc. my cardiologist did not suggest any of this but from my own research and people on here I have finally found relief!

[Autumn_Leaves in reply to Jdgirl030]

Did nothing for me, I’m afraid. Glad it worked for you.

[RichMert in reply to Jdgirl030]

I take Magnesium Citrate when I remember but may give those others a go.