So ive just arrived back home after being sat in A&E since 12:30. I went up there because I'm having very frequent ectopic beats, like all day. This has happened a few times now. Been on 1.25mg bisoprolol for 3 months. Before that i was on 2.5mg and still having ectopic beats. So A&E did bloods which were fine, chest xray was normal, ecg was done for about 30 seconds so didn't catch anything so they think it's fine. Told to go home and maybe go back up to 2.5mg.
So...that's it...
No answers, ectopics still happening to this minute. Advised to phone my cardiologist myself who I can never get hold of, GP will be written to who will do nothing but say ring cardiologist. I'm fed up and so upset. I have young autistic children at home and need to be fit and strong for them. I'm worried something is developing but feel like I'm being fobbed off all the while. Heart disease runs in my family. Both maternal granparents died suddenly in their 50's but the doctors don't care. The locum consultant said its probably benign and unlikely to develop into anything serious. How does he know? He said himself he's no cardiologist.
Sorry for the rant people but I'm so unhappy.
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DanniC88
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That would be extremely frustrating, last time in emergency, they said I had reflux, increased med. Gp once decided my breathlessness was asthma. Hard when others besides cardiologist say all good, don't worry. It's not worry that causes the pain, being ignored causes the worry. I hope you get somewhere, you certainly have your hands full besides your ectopic beats. I've never done it, but maybe phone the BHF nurse on this website. Take care. Moni
Moniren, I never knew I was asthmatic in fact, having had both a brother and mother who were asthmatic and having listened to them over many years having asthma attacks, I can honestly say that I have never had an asthma attack, however I do have restrictive breathing at times and if I allow it to continue this in turn eventually results in me suffering from angina pains which at times can be quite chronic!My problem over the 4 years since I became ill is persuading the respiratory and cardiology departments to talk to each other, it is almost as if there is some kind of barrier between them!
But surely if your lungs aren't always performing properly and if at times this results in the levels of oxygen in the blood being significantly reduced which in turn triggers the heart into doing a more than somewhat large wobbly and as the conditions are so very closely related, then why oh why won't these departments talk to each other?
Just read your bio, you have been in the wars. I hope it gets sorted. I did have asthma during my life, the spray was not suitable, caused dizziness. I learnt to control my breathing, so rarely have asthma attacks. I have been diagnosed with microvascular angina, so occasionally get breathless. Take care. Moni
Prior to all this starting for me 4 long years ago, I was an almost exceptionally fit 68 year old who cycled at high competition speeds, between 300 & 500 miles per week. But ever since Nov. 2017, until very recently, even looking at my beloved bikes was likely to start breathlessness and angina!However since my last A&E visit a consultant nurse has significantly upped my meds. as well as putting me onto some diabetic meds as well all of which appear to be improving matters, so much so that I am once again starting to be able to some muscle building exercises (trunk curls, press ups & squats) and am even getting into my bike shed and am now starting to crunch out some miles on the turbo trainer.
But I am still pushing for further answers as to why this is all happening because I know, my GP's know and the consultants all know that what has happened to me in the past is likely to happen again and yet they won't talk to each other!
I was on 2.5 Bisoprolol and was doing ok but my Cardiologist changed me to Tildiem because I was still getting to many ectopics and SVT, definitely noticed the difference within days. It might be worth you asking to try a different med, Bisoprolol is a beta blocker, Tildiem (Diltiazem) is a calcium channel blocker.
Ectopic beats are uncomfortable, frustrating, and can be worrying. However, the general consensus is that unless they’re accounting for more than 10% of your total heartbeats (so roughly something like 7000 ectopic beats a day or more) they’re generally considered nothing to worry about in and of themselves. Have you had a holter? This would tell cardiology what percentage of your beats are ectopic, and whether they’re originating from the atria or the ventricles (PVCs, which are ectopics originating from the ventricles, can be a problem regardless of frequency depending on whether they’re happening in runs). If you also had an arrhythmia like SVT of AF, your ectopics would be given a bit more weight, as episodes of both are directly caused by ectopic beats, so more frequent ectopics mean a higher chance of having episodes, but even then, the treatment offered in many cases is beta blockers like bisoprolol.
As per another reply you’ve had, I have SVT, and after several years was switched from bisoprolol to a calcium channel inhibitor. This might also be an option in your case, but the sad reality is that, as they’re considered benign in 9 cases out of 10, very little research goes into ectopic beats. The reality is that we know enough about them to determine when they’re something to be concerned about, but we still don’t understand how or why they occur. There is a growing belief that almost everyone experiences ectopic beats, with a recent study involving people with no history of any palpitations at all revealing more than 80% had ectopics on a 48 hour holter monitor, but only a relatively small percentage of people that have them ever notice them. We do also know that once a person starts to notice them, the body becomes primed to notice more: it’s a vicious circle. There is a U.K. cardiologist by the name of Sanjay Gupta who has done some videos on YouTube regarding ectopics, and he talks about this. He also explains the difference between ectopics caused by the parasympathetic and sympathetic nervous systems, and they’re definitely worth a watch.
In my own case, I was having hundreds of both atrial and ventricular ectopics a day, and very frequent episodes of arrhythmia as a result. Mine are a mix of sympathetic and parasympathetic, and I do need medication because of my SVT, but I was able to massively reduce the number I was having by making lifestyle changes. It doesn’t work for everyone, unfortunately, but it’s been medically proven that for some people, lifestyle changes can significantly reduce the frequency of both PVCs and PACs. The list of things recognised as being able to cause or worsen them in some people include:
Caffeine (all caffeine including in tea and medications)
Dark chocolate
White chocolate
Medications, including but not limited to, asthma inhalers, antihistamines, some cough mixtures, decongestants such as pseudoephedrine found in cold remedies, local anaesthetics, and stimulant drugs.
Nicotine
Recreational substances, particularly stimulants.
Alcohol
Stress and anxiety
Insufficient sleep
Anecdotally, spicy food and ginger are also potential triggers (ginger is actually a big one for me). By working through these, I was able to identify a few that impact on my ectopics, cut them out or make lifestyle changes around them (like not burning the candle at both ends) and went from hundreds a day to around a dozen, many of which are now positional, so are triggered by bending, or lying in certain positions. The offshoot to that is that I also haven’t had an episode of SVT in almost 6 years now. I still notice most if not all of them when awake, and I’m having a spell of significantly increased frequency at the moment due to stress, but it’s otherwise made a huge difference. I’m a single dad, and the increased stress in my life at the moment is my high functioning ASD teen being extremely unmanageable and violent with her behaviour. Good ol’ hormones.
I hope some of this helps. If you haven’t already had a holter, that’s definitely the next step you need to push for to establish the frequency and rule out any ventricular runs, but ultimately, for many people, PVCs and PACs are something that you simply have to learn to accept and live with. I also have a terrible family cardiac history, so I do understand the concerns you have, but I would definitely advocate trying lifestyle changes: it may do nothing at all, but for some people - myself included - it can make a massive difference to frequency. When struggling with ectopics, I always think people have nothing to lose by giving it a go.
Hi thanks for the reply. It was definitely worth a read. Lifestyle changes is something i will look into. I don't drink at all, stipped smoking Feb2019 and haven't smoked since, only drink 2 decaff teas and 1 decaff coffee a day. I do like chocolate and admit i dont habe the best diet and i could definitely do with losing some weight. Ive had two 7 day holter monitors, echocardiogram, Exercises ETT, and an MRI ranging from end of 2019 to 2020 so fairly recent tests. All came back clear. Was admitted in Sept 2019 to cardiac ward and was diagnosed with sinus tachy so given bisoprolol to lower the heart rate but it doesn't do much for the ectopic beats.
If you had the holters and had ectopics at the time, they would have determined the burden (percent that were premature in a day) and whether or not you were having runs of PVCs then, which would suggest you were under the 10% and they were happy you weren’t having triplets or runs. It does look like they’ve been very thorough with you - more thorough than they ever have been with me, for sure, in spite of a diagnosed arrhythmia - in which case it may well be a case of reducing them if you can, and learning to live with what you can’t reduce. Losing weight will benefit you regardless, along with improving diet, particularly as you have family cardiac history. A lot of my issues with my SVT were disregarded/ignored because of my size at the time: I was morbidly obese when it started. Lost 10 stone to get to a healthy weight a few years back and find doctors are more inclined to listen to me as a result. Still far from perfect, still find I have to fight for good care across several fronts, but not immediately dismissed as being my own fault any more. The effect of stress and insufficient sleep on the body shouldn’t be disregarded, though - it’s extraordinary what excess cortisol can do to our health, particularly over prolonged periods of time.
I have been there, seen it done it and I have the blasted 'T' shirt!!
I have been admitted to A&E after blues and twoes ambulance journey now on 4 occasions and on each and every one of them, I have been assured by younger doctors that I would be kept in for further tests and examinations and then only to be told by some pompous overweight consultant that I am being immediately discharged!
My mental state on each and every occasion has been so low that I haven't had the where with all to argue my case as I was so emotional.
On 3 of those occasions (when I lived in another area) my own amazing GP wrote letters of complaint and nothing was done, other than I had appointments with both respiratory and cardiology consultants, but as they steadfastly refused to work together, neither of them have been able to replicate the condition which suddenly triggers my heart to go AWOL!
So I am now in another area of the same county with a new larger GP surgery which is generally pathetic as they follow the laid down NHS guide lines of patient care to the letter, s this is the case I am having to fight my own corner and am finally getting some results!!!!
I have achieved this by discovering some string pullers in the secretarial and admin departments of the local County Hospital who understand my problems and are now clubbing together to fight my corner. It has taken some doing, it has upset my GP's who are so up their own jacksies (and they all happen to be overweight), but I am finally getting somewhere.
So DanniC88 you might need to be prepared to fight your own corner!
Suggest you see a cardio privately. Go for one who has a senior NHS position as it will help you get on an NHS list if treatment is needed. 1st appointment is typically £250, but it may be money well spent.
Your experience of feeling abandoned by the health service is quite common.
We shouldn't have to feel this way. I feel some deaths could easily be avoided by delays, neglegence and poor care. I like the NHS as a whole but I feel the cracks were beginning to show long before covid turned up. However covid has now given a good opportunity for NHS to blame everything on it.
Exactly the same happened to me a week or so ago. Except that I did not realise that the reason I was feeling so ill was extremely irregular heart rhythm. It was picked up by the triage nurse when she took my pulse.They put me on an ECG monitor for 2 hours, but it did not pick up an arrythmia. Apparently this is not uncommon
The A&E doc said that I should wear a Holter or similar.
She wrote to GP, now I am waiting for an appointment to have monitor fitted.
I suggest you talk to GP. They can arrange for you to wear a monitor without reference to A&E which will be fitted by your local hospital.
Ectopics are not in general life threatening but you have been on a Beta Blocker, and one of the reasons for prescribing is to help with arrhythmias.
So if they did not help, you need more tests.
It may not even be directly heart related, e.g. an overactive thyroid
I am sorry your not getting any help with your problems. Have you tried contacting the Cardiologists secretary. Then you may get answers quickly. Hope you get things sorted soon. Brian
I just dug out the most recent letter from the cardio team and found a telephone number. Upon ringing i found myself greeted with a "Im away from my desk i cant be bothered to talk to you so feel free to leave a message but its touch and go if i get back to you."Kinda message im always greeted with
Well i managed to get through to the receptionist and she phoned me back within a few hours!! God i nearly fell off the chair.So she said she will put it to the cardiologist about whether i can increase the dose again and whether anything can be done about the appt in January. However he's on holiday from the end of this week and it looks doubtful i will get a response before he goes.
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