Ectopics: Hello. I suffered a heart... - British Heart Fou...

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Ectopics

Stable-Builder profile image
21 Replies

Hello.

I suffered a heart attack and had a by pass op in August. Since then I have had ectopics, making me feel anxious, butterfly’s in the stomach, shortness of breath, affecting my sleep. These appear to have increased in frequency over the months, mainly when I am in a resting/peaceful mode. The cardiologist has today increased my dose of bisoprolol to 20mg per day in an attempt to combat this.

My GP has told me not to worry about ectopics, learn to live with them. The specialist is concerned at the 20% bigemini ectopic burden. These mixed messages are alarming me.

Is anyone having a similar problem? Any suggestions?

Kind regards

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21 Replies
Cricket23 profile image
Cricket23

I too suffer from ectopics, and being told ‘not to worry’ is easier said than done. I find meditation and deep breathing exercises helpful. You might want to contact the BHF and speak to a nurse. Cognitive Behaviour Therapy can also help.

Stable-Builder profile image
Stable-Builder in reply toCricket23

Hi Cricket23. Please accept my very belated thanks for your reply. It was helpful.

The current thinking is that most if not all people experience ectopics, but only a minority are aware of them. Once you become aware of them, we know the body becomes more sensitive to noticing them, which in turn often increases anxiety and stress, which can also increase ectopics. Whilst generally considered benign, there are situations where ectopics are considered a problem in their own right, and that’s if the burden is more than 10%, or you’re getting runs of three or more PVCs (ventricular ectopics). Based on your last post, your consultant will be wanting to reduce the frequency of your ectopics given the high burden, but your GP likely doesn’t know enough to realise that. You have to remember that GPs are jacks of all trades, they have broad knowledge about lots of things, but no deep knowledge about much, and that means that I would always be guided by a consultant being concerned over a GP not being too fussed. It’s not heart related, but I had a GP tell me my raised liver enzymes were fine, when I knew from my specialist that my threshold for ok is a lot lower due to medication I take. Sure enough, consultant immediately stopped a bunch of my treatment and referred me to hepatology. The GP would have just left it.

Some people can get a bit funny and defensive when I bring this up, and I don’t really understand why, but it’s medically proven that there are some dietary and lifestyle factors that can increase the frequency of ectopics for some people. Making changes unfortunately won’t work for everyone, but the following things are the ones known to medicine to be able to cause PACs and PVCs;

Caffeine, including in tea, medications and chocolate, and it doesn’t have to be to high levels

Dark chocolate

Medications, including but not limited to inhalers, some antihistamines, and decongestants like pseudoephedrine found in cough and cold remedies

Nicotine, including via nicotine replacement therapy or vaping

Alcohol

Recreational substances, particularly stimulants

Stress and anxiety

Insufficient sleep

I have an arrhythmia triggered by ectopics (SVT), and struggled for years with very frequent bouts as a result of having several hundred ectopics a day - I wasn’t anywhere near the realms of burden you have, but it had a massive impact on my day to day life. After the last time I ended up needing my heart stopping to get me out of an episode of SVT, I did a lot of reading, and then set about cutting out the known triggers. I still have ectopics, but by completely cutting out caffeine, dark chocolate (including chocolate treats when eating out, as they’re often made with dark chocolate even if they taste milk), things like cough mixture and lemsip, and avoiding adrenaline containing meds like lidocaine, my ectopics have dropped to around a dozen a day according to my last holter. I usually feel every single one of them, particularly the PVCs, which are like being thumped in the chest, but I haven’t had an episode of SVT in almost 7 years, versus multiple episodes a month, sometimes a week, before making the changes. I don’t drink much (one or two drinks once in a blue moon), but alcohol is guaranteed to give me ectopics. The other time I always have more is if I don’t get enough sleep. Anecdotally, a lot of people also find that spicy food causes an increase, and ginger. Ginger is one of the worst culprits for me, even though it’s not on the list (yet). Depending on whether they’re arising out of the sympathetic or parasympathetic nervous system (for some people, myself included, it’s both), ectopics can also be positional, for example triggered by lying a certain way, or if you bend forward, both of which trigger my PVCs. Then last but not least, there is also a subset of patients that find vigorous exercise makes ectopics more frequent.

It might be worth exploring the above - as I always say to people, other than a caffeine hit first thing (which I do really miss, make no mistake), there is little to lose by trying if ectopics are causing problems. For me, it’s made a huge difference to my health and quality of life, and enabled me to reduce my anxiety around the ectopics themselves. My other suggestion regardless of the above, though, would be to ask your cardiologist about the possibility of an ablation: if there’s clinical concern due to burden or runs, then my understanding is that this is usually the next step after trying medication, but a person’s medical history and ongoing issues will obviously play a part in whether that’s appropriate. Aside from beta blockers, the other oral option is a calcium channel blocker: I swapped to verapamil due to beta blockers suddenly making me bradycardic after a few years. I’d been able to cope with the low blood pressure and orthostatic hypotension, but the low heart rate made me feel horrendous and put me in hospital. Again, I don’t know if CCBs would be appropriate due to your history, but it might be something for you to ask about or look into?

I hope some of that is useful. If you haven’t watched them, Dr. Sanjay Gupta, who is an NHS (and private) cardiac specialist based in York, has done a couple of good YouTube videos about ectopics, explaining how we think they occur and ways that you may be able to reduce them. He’s one of the few doctors out there that seems to recognise that even in those where they’re not clinically concerning in their own right, ectopics are very much an unpleasant phenomena for those experiencing them.

Britishgas profile image
Britishgas in reply to

HiYour post made very interesting reading. I was diagnosed with ectopics 2 years ago. I was put on 1.25mg of Bisoprolol about 9mths ago which did help & I would go about 3 wks when they weren’t too bad then back with a vengeance for 5 or so days.I am now getting them more frequently again. I wonder if anyone else get the same symptoms as me, I feel my tummy bloats & I feel pressure in my head then the thumping in my tummy & neck which go on for hours. My cardiologist talked about an ablation or pacemaker but said not for me at the moment. He agreed for me to try an extra Bisoprolol ( use like a pill in the pocket) when the symptoms start which I have done but didn’t help, As I have a low pulse approximately 45-48 I was told that if I increase b/s to 2.5 mg so long as it doesn’t make me too bradycardic , so what do I do ? What bad effects could I have & who would monitor me. I am paying privately but the cardiologist said this is difficult to treat.

Sorry to go on but these episodes make me so miserable & grumpy.

Stable-Builder profile image
Stable-Builder in reply to

Hi Charlie_G. Please accept my very belated thanks for your reply to my post. It was most helpful.

Pollypuss profile image
Pollypuss in reply to

Oh yes . Sanjay Gupta. I wish I could have him as a cardiologist. He really knows a lot. Also about the relation between the heart and digestive system and how it can sometimes be like heart pain etc

Best2 profile image
Best2

Hi Stable-Builder, u also have frequent ectopic beats last 24 hr ecg showed 10 per cent burden and I was reffered to an ep specialist, he said that 10 percent and above burden they have to do something as there’s a high risk of the heart becoming enlarged over time ! I was offered a cardiac ablation but there’s a very long wait for this so I’m trying medication first bisoprolol after 3 months the burden is reduced to 7 percent and I’ve now increased the dosage to 5 mg of bisoprolol, I’m must say the tiredness is the worse thing for me and lack of energy, not back to see ep till July and thinking I may go ahead with the ablation to try and get off the tablets ! Strange how different doctors have different views about ectopic beats isn’t it ?

Stable-Builder profile image
Stable-Builder in reply toBest2

Hi Best2. Please accept my very belated thanks for your reply to my posting. I found it most helpful and I am still tweeting my meds. Many thanks.

Musicl profile image
Musicl

Hi, After my HA in Jan 2021, I was on Bisoprolol amongst other heart drugs. I found that I was out of breath and my asthma was worse, so I was taken off Bisoprolol. They didn't replace it with anything else. As for the Ectopic beats, I can assure you that these are quite common and nothing to worry about, as I have been having them for many years. It's best if you can cut out caffeine, as this can trigger off the Ectopics. I always have decaffeinated coffee and tea, and caffeine free coke. Ectopic beats are caused by rushes of adrenaline. I hope this helps in some way.

Stable-Builder profile image
Stable-Builder in reply toMusicl

Hi ChristineK. Please accept my very belated thanks for replying to my post. I found it very helpful.

Musicl profile image
Musicl in reply toStable-Builder

Hi Stable-Builder, I'm glad that my reply has been of some help to you.

BenThom-Wood profile image
BenThom-Wood

Well @Stable-Builder, I don’t mean to worry you but my ICD recorded several VT episodes which, at a review in Nov ‘21, were then explained away as ectopic heartbeats. My only knowledge of the word ectopic refers to pregnancy so I asked how could a heartbeat exist outside the heart?

I was told my heart beats from the bottom rather than the top & such VT could be referred to as ectopic heartbeats.

I then had another cardiac arrest in Dec ‘21 which was preceded by these VTs.

I have asked to be more periodically reviewed by the cardiac team as it seems to me that my next cardiac arrest could be forecasted by these VTs / ectopic heartbeats.

Good luck to you.

BenThom-Wood profile image
BenThom-Wood

I was bumped up to 12.5mg of bisoprolol which the GP thought was a lot. Heaven knows what they’d think of 20mg.

I started in 2019 on 1.25mg!

Stable-Builder profile image
Stable-Builder in reply toBenThom-Wood

Hello BenThom-Wood, thank you for replying. I am now 8 months after Cabg3 still suffering ectopics to the tune of 20% burden, suffering insomnia (2 hrs last nigh) , taking 80mg of Atorvastatin with the trimmings and 10mg per day Bisoprolol, down from 20mg. Life is not quite the same after my HA etc. and just hope things settle down in time. My Cardiologist has hinted at Ablation or a drug Amiodorone. Don’t fancy either. Think I will just persevere with 40mg Atorvastatin and see how things go. Cross your fingers. Xxx

Does anyone out there like Amiodorone?

BenThom-Wood profile image
BenThom-Wood in reply toStable-Builder

Ah again @stable-builder, after the 2nd CA (Sep’19) they put me on amiodarone for 12 months. Then Dec ‘21 threw them another curveball. I’ve only ever gone up with bisoprolol to date.

I’m intrigued by the burden concept of ectopic heartbeats, has this ever been explained to you in terms I might understand please?

Stable-Builder profile image
Stable-Builder in reply toBenThom-Wood

Hello BenThom-Wood. Sorry for the delay.

I understand my 20% burden is a 20% increase in the number beats my heart does each day. Then it follows each day my little heart beats 20k more than it should. This is alarming and makes me anxious, is my heart wearing out?

My consultant offers two solutions , the drug or ablation. He prefers leaving well alone and see if things settle down, although he has agreed I reduce Atorvastatin to 40mg. Still on 10mg bisoprolol. How you doing?

in reply toStable-Builder

The burden is just the percentage of beats you have each day that are ectopic, not actually extra beats that you wouldn’t have had otherwise. Although often colloquially described as extra beats, ectopics are actually beats that come early: the medical term for an ectopic is premature contraction, either ventricular (PVC) or atrial (PAC) depending on whether it’s the top chambers or bottom chambers of the heart that contract too early. The issue with a high burden is that the heart is working harder, hence why they do something about ectopics that exceed more than 10% burden even in the absence of other cardiac problems or arrhythmias.

Stable-Builder profile image
Stable-Builder in reply to

Thank you Charlie_G.You explain that so well, better than the doctor, or are you a doctor?

My results remain 20%, the treatment, leaving it to settle down.

Hope it doesn’t take too long.

I read your various posts with great interest.

Keep it up.

Ray.

BenThom-Wood profile image
BenThom-Wood in reply toStable-Builder

I’m not 3 bad thanks @Stable-Builder, straining up under the bear I think. I’m now on 6 monthly echocardiograms as the regurgitation fraction is worsening slightly. Waiting on the next CA for the next drug. Living each day as if it’s my last!

Stay cool friend.

in reply toBenThom-Wood

The burden is the number of beats in a day that are ectopic, usually expressed as a percentage. A 10% burden would mean that 10% of all heartbeats you had in 24 hours was an ectopic. In someone with an average heart rate of 70bpm, this would equate to about 10,000 ectopic beats a day. It’s expressed as a percentage rather than a number because average heart rate varies from person to person. The threshold at which ectopics are usually considered a problem in their own right is a burden of 10% a day or more.

Stable-Builder profile image
Stable-Builder in reply to

Thanks Charlie_G. All this started after my attack and operation. Just hoping it settles down.

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