Ectopic beat treatments ?

[Mgs333]

I have just had another 24 halter monitor to try and make some sense of my night-time Ectopic beats. I have had these every night for over 4 years but still no nearer a solution. My latest consultant tells me that they are notoriously difficult to treat and has just doubled my dose of Bisoprolol..... I have told him that they are getting worse and sometimes very scary.....I seem to have hit a brick wall with this right now....does anybody else have any ideas about alternative treatments ?

[Midgeymoo17]

On the NHS- nothing else is really availible.

If you had the means to go private, you could be offered an ablation where they try and burn away the bit of tissue causing the ectopic.

However, there is a reason this treatment option is rarely availible on the NHS. As you know by now evtopics are more a pain than they are dangerous. An ablation (although fairly routine) does carry significant risks- stroke included.

On cost value for a treatment ablation is also not great. It is 60-70% successful in temporarily stopping arrythmias but most pepplr with ectopics experience a reoccurance with in 5 years.

[Mgs333 in reply to Midgeymoo17]

Thanks for your reply....yep I am aware of the ablation option....its worth thinking about but I am surprised and a bit miffed the lack of NHS treatments.....also if they don't know how to treat then how can they sure ectopics are not dangerous ! Looks like I will have to live with situation, but easier said than done.

[Magz117 in reply to Mgs333]

Sounds a lot like I get during the night. Some nights it really bothers me then other times it doesn’t. I wonder if what you eat before bed might contribute to the severity of the blips 🤔. I have AF so I know that this irregularity is happening all the time just not aware of it during the day. I think it’s our normal.

[Hidden]

In short, there’s really not a lot medical treatment wise other than beta blockers. Calcium channel inhibitors can be used as an alternative in some circumstances - I took bisoprolol for 8 years and have been on verapamil for the last 3, but my issue is actually SVT, which is triggered by ectopics, so the idea is to reduce the number of those in an effort to ward of attacks. As midgeymoo says, you might, potentially, be able to obtain ablation privately, but the argument is that ablation isn’t appropriate for ectopics, hence why it’s not done on the NHS. Even in people where the ectopics trigger SVT, ablation is actually a fairly limited occurrence outside of people diagnosed with Wolff-Parkinson White syndrome (where the success rate in stopping SVT with ablation is above 90%) or those with frequent, intense attacks. One of the reasons is that the success rate for idiopathic SVT is dependent on a) being able to trigger the arrhythmia during the procedure, and b) being a type of SVT that can be treated with ablation to begin with, and not all are. The procedure also carries risks of its own, and a small but still surprisingly high percentage of patients actually find they’re worse after ablation in terms of palpitations than they were before, even if the primary arrhythmia itself is improved.

I appreciate that your ectopics are overnight, but have you looked at the known dietary and lifestyle factors? For the first 5 years of my SVT diagnosis I had really frequent episodes. After another major one n 2015 where I ended up in resus feeling very unwell, I finally decided enough was enough and cut out all the things that are medically known to increase/worsen ectopics. In the end, I discovered I’m sensitive to caffeine, dark chocolate and ginger, as well as local anaesthetic (which I’d had the day of my last major episode for a dental filling), and pseudoephedrine which is a substance found in many cold, flu and cough remedies. In cutting things out entirely, I do still have ectopics on a daily basis, but not as many as I used to leading to having not had a single episode of SVT in almost 6 years where I was having one or two a week on average. Excluding things doesn’t help everyone, but for some, it makes a huge difference. You may already be well aware of these and have tried them, but the full list of things known to exacerbate ectopics are:

Caffeine (all caffeine inc. in teas)

Ginger

Dark chocolate

While chocolate

Tobacco

Alcohol

Medications including salbutamol, anti-histamines, local anaesthetics containing adrenaline, and pseudoephedrine

Recreational drugs, particularly stimulants

Stress

Insufficient sleep

Some people also find spicy food triggers them, but it’s not on the ‘official’ list as yet. I’ve personally found that total exclusion is the only way forward, but that it does really reduce the number and intensity of ectopics I experience as long as I do completely avoid the things I know set mine off.

[Mgs333 in reply to Hidden]

Thanks for your reply....Ever since I started having these ectopics I feel that I am fighting a losing battle...I have been through the mill with about every test under the sun including, angiograms, ct scans, calcium scorings , tread mills and umpteen ecg's etc etc...nothing has given me any real answers...I have also had the "benefit" of 3 different consultants. I don't expect the world to stop just to sort me out but I think it is reasonable to expect to be a bit further down the road than this.

I think the real difficulty is trying to get my consultants to take me seriously enough. Capturing my ectopics/palpitations has been a challenge as I don't get this during the day, even when I go to the gym or run, I get nothing its only at bedtime when I lie down and try to sleep I get these random thuds in my chest that are quite scary...its almost like they are positional, if you get my drift....and that is something that my docs think is odd, and they have no answers to.....my heart scans and structures are normal. I understand the trigger point that you make and have been down that road many times, all to no avail........and so it goes on.

[Midgeymoo17 in reply to Mgs333]

Can I just add to this- I have ectopics (my heart Scans are also abnormal) and I can almost exclusively only feel them when in bed. However, I do actually (evidenced with exercise test and 24hr tape) have them all day long.

[Hidden in reply to Mgs333]

All my tests have been normal, too. Since the SVT began, I get daily palpitations where I’d never ever had them before, and my hr is very reactive - down to low 50s at rest these days, but it can jump to 130 just walking to the kettle. I do have a couple of health problems including inflammatory arthritis, but I’m only 36, healthy weight, exercise regularly, good diet, don’t drink at all, quit smoking years ago, and yet there are nights where I feel so awful I turn over in bed telling myself ‘if I die, I die’ and go to sleep. Apparently my palpitations are anxiety, though, even though I can go to sleep whilst experiencing them, and do have an actual underlying cardiac problem 👀🤷‍♂️ That said, I have finally gone and got myself re-referred into cardiology due to changes to my symptoms and distinct worsening over the last 12 months or so. We moved countries within the U.K. last summer and have experienced massively improved medical care since, so I’m holding out hope that they will at least listen to me rather than dismiss everything on the basis of mental health history from my teens.

I don’t necessarily think the issue is that they’re not taking you seriously: unfortunately, the bottom line is that ectopics are only considered a problem in their own right in a very, very tiny number of cases. A large number of people the world over have them every single day, sometimes thousands of them, the main difference being that not all that have them physically feel them in the way that you, I, and many others on this forum do. And the thing is, for all they’re horrible to experience, they genuinely are benign in 99.99999999% of cases. The issue really is that as with many things in medicine, no one truly understands what causes frequent ectopics: if we did, there would likely be more treatment options. We have a general theory, but that’s the lot. Like with the SVT, where we know some cases can be solved with ablation and have developed a way to tell which will likely respond, but we don’t actually understand the underlying differences that mean it doesn’t work for all cases.

There’s this belief that we have extensive medical knowledge, but having been thrown in at the deep end 12 years ago when my daughter was born, and with all our joint health problems since, I’ve learnt that’s simply not the case. Most people don’t realise that our understanding of the human body is still infantile, and any decent doctor will acknowledge that’s the case. We’re practicing writing out the alphabet and still getting some of the letters the wrong way round, particularly when it comes to genetics and the impact of genes on disease, but not exclusively just with that. The real eye opener for me was a few years ago when I learnt that within 5 years of qualifying as a doctor, 50% of what they are taught in medical school is either incorrect or obsolete: to get good treatment and care, we’re completely dependent on massively overworked medics finding time to independently keep on top of all the stuff that’s changed, particularly when it comes to general practice. Hopefully, one day, things will have progressed to a point where we don’t have to put up with the symptoms we do now, but unfortunately we’re not there yet.

[Mgs333 in reply to Hidden]

Thank you...all very interesting.

[Magz117 in reply to Mgs333]

Seems there are a lot of us suffering with this problem.....you’re not alone 😊

[marypw]

I get ectopics- I know very well what that being thumped in the chest feeling is like. I used to get them a lot whilst sitting quietly watching TV in the evening. Mine have improved hugely on bisoprolol.

I just wondered if you'd looked at the York Cardiology videos on YouTube? He has done a few on ectopics which might be worth a look.

[Mgs333 in reply to marypw]

Thanks Marypw....Yep in fact I have a had a few telephone consultations with the doc myself.....nothing really came of it though.

[IDPJ]

My consultant reduced my dosage after a week or so they stopped

[IDPJ]

I also the Kardia monitor to record heart beat and showe it to consultant l, you then have evidence of when it happens

[Mgs333 in reply to IDPJ]

I know this system....it won't work for me because you have to be holding this machine in your fingertips to get a reading. My palps are random and through the night and often wake me up, you can't anticipate when you get them....I spoke myself to the AliveCor company who confirmed this.

[Melanie1uk]

Have you ever looked into high tyramine in your diet, I was up constantly every night for 4/5 hour stretches of missed beats and found out mine was caused by consuming high amounts of tyramine and high histamine foods. Mine are so much better now avoiding these foods, it will take a few days though for the tyramine levels to subside in the body.

[Magz117 in reply to Melanie1uk]

Ooooo must investigate Tyramine as a possible culprit for this problem. I have always thought the extra beats and palpitations may be because of something I’ve eaten. Now for some research 👍

[Dazgad]

I’m similar mate I get 1-2 at night or mainly after my days work!! They are scary but apparently not too serious if you’ve had them for 4 years I’d say they ain’t serious I’m trying no caffeine, de stress, exercise but tbh I carry anxiety around with me , hard to escape it, hope u find a solution

[Tessie28]

Hi I feel your pain. 6 months post AVR and have ectopics. Hate them! But trying not to worry as treatment is difficult. I find Dr Sanjay Gupta [York Cardiology] is a very reassuring watch. Waiting for my 72 hour holter result but not expecting much. Spent 4 days at the seaside last week. Drank 2 glasses of wine per night and only had one mild ectopic! Probably conincidence.

[Hidden]

You have no problem with your thyroid gland? often this is the cause of ectopic beats. it is worth doing tests if you have never checked. sorry if i wrote something wrong, english is not my first language. take care 😊

[Gladstone001]

Hi,

Please take a look at my story:

healthunlocked.com/afassoci...............

It may worth thinking about taking Magnesium and Ubiquinol CoQ10. It worked for me.

All the best...

[MrsK82]

I’m with you. They are truly horrible 😞 I wish they did have a solution out there.