Ectopics all day and night

[Evaluna]

I know you're a helpful and supportive lot and really need support at the moment. I have had ectopics for over 35 years but never at the frequency that i have had for most of the last year. I had 2 day monitor... of course that was a good day when I only had a few hundred but now can get thousands a day. I started taking bisoprolol 1. 25mg in January which reduced frequency for a couple of months but now makes no difference even though I have doubled the dose. I am slim, have a really healthy diet, usually walk between 3 and 5 miles most days, avoid caffeine, alcohol, etc. I am at my wits end and just feel like I can't socialise any more as my heart us thumping around. Oh and also get SVTs. With nhs in the state it's in I don't really feel I can waste their time with this 'benign' condition!

[Tos92]

Hi  Evaluna

I’m sorry to hear about the worry your ectopics are causing you.

You’re right in saying that it is mostly treated as a benign condition however, I note that you say you can have thousands a day. I would suggest you contact your GP for a medication review unless you’re already under the care of a cardiologist.

I will also tag  Hidden who also experiences ectopics like yourself.

All the best.

Tos

[Evaluna in reply to Tos92]

Thanks for the comments. I do have an appointment with the GP in about 10 days but am not very optimistic! I know there's no easy answer. Eva Luna

[Autumn_Leaves]

I have a similar history of ectopics which increased in frequency from a couple of hundred (which I thought was bad enough) to the thousands, all day every day. You should have had an echocardiogram to check all is well structurally so I’d push for that when you see your GP.

My ectopics just seemed to get worse and worse and one day when I thought I had “really bad ectopics” that wouldn’t settle down at all, I did an ECG with my watch and it was AF. This won’t necessarily happen to you but this is why you need an echocardiogram. I had what was considered “nothing to worry about” degree of mitral valve regurgitation identified 7 years before AF happened. I believe this to be the underlying cause of my AF, along with haemochromatosis which predisposed me to develop arrhythmias. (Most people with AF don’t have haemochromatosis, and vice versa, it’s just one possible contributing factor in my case)

I had very little improvement on Bisoprolol which I started taking after my first AF episode, but I was told by an arrhythmia nurse that it is protective, so I’ll accept that. However… in recent months I’m having less ectopics. There’s no explanation. I had a couple of venesections for haemochromatosis, so maybe it’s shifted something. Maybe it’s a longer term effect of BBs but that’s just a guess. On the other hand, I’ve had short term improvements in ectopics only to have them return with a vengeance.

I’m a skinny, whole foods plant based, rarely touch alcoholic good girl with low cholesterol, low BP, low hbA1c. On paper it all looks perfect. Arrhythmias can affect anyone. It’s not a judgment on doing all the “wrong” things or the “right” things. We’re not being punished for living an immoral lifestyle. I’ve seen people rock up on forums newly diagnosed and they think it’s all their fault when it’s not. One lady was told by the Dr who diagnosed her that she could do with losing weight. Me? I was told “well, these things are more common as people get older”. So it’s all my fault for getting old! Seriously, keep on doing the good stuff. It’s good for everything else.

[Evaluna in reply to Autumn_Leaves]

Thank you so much, it sounds like you have more to put up with... fairly sure I don't have AF-yet. Lol.I had an echo last year and heart is fine (tho they did discover my aorta is slightly dilated). I think I just need to find a way of accepting these things. I can cope OK at home but can't handle social situations if I am getting several a minute.

Today a second bisoprolol made no difference but 20 hours after the ectopics really kicked off they suddenly stopped! No rhyme or reason... that's one of the frustrations.

As they say, getting old ain't for cissies!

[Evaluna]

Hi, sounds like you have a lot going on!I do feel I should be able to ignore the ectopics and I can, if I am getting a few hundred a day, but it's this constant barrage that gets me down. And I think what's the point in taking medication when it seems to make no difference! And whenever I am monitored it will be on a good day when I am not getting long runs or 2 or 3 together so I wonder if the medics think I am exaggerating. I read about people on here, like you, who have real problems so I don't feel I have any right to complain!

Good luck to you and stay well.

[Deedow in reply to Evaluna]

I had a similar issue in that every appointment I had, the ECG was normal. I bought a kardia monitor £99 on Amazon and I was able to send the data to the cardiac unit. It's not so easy to get fobbed off if you have proof of what's going on. Don't put up with things when you know it's not right, if you don't stick up for yourself nobody else will. Keep asking for answers until you get one.

[Evaluna in reply to Deedow]

I think sometimes there is no answer.. or at least not one they know yet. I have followed Sanjay Gupta York Cardiology who does some very reassuring videos on you tube. He says to get everything checked out but that lots of people get then but don't feel them. I know when I have had a monitor it picks up about 5 times as many as I actually feel. I don't think I am going to suddenly keel over but I just can't focus on anything else when they are so frequent... think I could easily become agarophobic which I really don't want!!

[talipia]

Hi, They are a most frustrating, worrying and unwanted affliction,sympathies. Had them in phases for 2 decades but last summer they shot up and had them in 2's and 3's day and night. Spent my savings on getting to see a cardiologist and after the usual battery of ecg angiogram etc, and virtually no change to my meds (bisoprolol 2.5mg set by my GP during a phone call about the same problem) they have calmed down drastically with his reassurances. But I still remain puzzled and do think that having had THAT virus about 2 months prior to last summers increase had some influence.

[Evaluna in reply to talipia]

Yes, often seems no rhyme or reason. I just came upstairs to listen to a relaxation tape and they've kicked off again having been quieter since yesterday pm!!

[Evaluna]

I do have an appointment with gp in a weeks time but not expecting much. Had a 48 hour monitor a year ago which only showed 350 ectopics and a short Svt. Have had an echo and a stress test and all ok. Apart from slightly dilated aorta heart is all good. My mum had these too. And I wonder if my grandfather did as he used to sit holding his pulse sometimes and saying his heart was all over the place. He died aged 94!Thanks for the advice, much appreciated.

[DoggieMum]

It doesn't sound very benign to me and you should not feel guilty for contacting the NHS that's what they are there for.