Ectopic beats are freaking me out. - British Heart Fou...

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Ectopic beats are freaking me out.

Gingernut64 profile image
23 Replies

I have recently started to experience frequent PVCS (ectopic beats). Lying down I seem to be ok, but when up and about I get them every 5-10 seconds or so sometimes!!

My cardiologist doesn’t seem to be concerned as I had a normal echocardiogram and kind of just sent me on my way. He said it might be my heart getting fitter after pregnancy (4 months pp).

Does anybody else experience this? I was not getting these a few months ago. They feel very scary.

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23 Replies
UTFT9 profile image
UTFT9

Hi I hope your doing ok, I have been diagnosed with heart arrhythmia (ectopic heartbeats) mine are ventricular ectopics and supraventricular ectopics and yes they feel very scary so I can relate to that! I first experienced them 2 years ago and after a lot of pushing my GP and 4 cardiologists later I was actually diagnosed properly a few weeks back. I have also had numerous heart monitors and my echocardiogram came back all normal, I was on bisoprolol for about a year but the last cardiologist who specialised in electrophysiology more or less said my ectopic burden was low and they wasn't dangerous so I could come off the bisoprolol and just try to lead a normal life and try to move on from it all... BUT... it's very difficult to because I remember how I felt the first time I experienced an ectopic beat (it scared the absolute life out of me) and I still feel that way now and the mental impact it has as well is tough.

It's easy for someone who doesn't feel what we feel to encourage you to try and live a normal life having these ectopics but it's the physical feeling of having an ectopic which scares you and also it then plays on your mental side.

2 years down the line I still struggle with them but I try to take each day as a new start and a new challenge to try and find coping mechanisms for the ectopics and I am trying to train my mind into understanding they aren't dangerous so I can try and have some normality moving forward!

it's a tough one really I suppose but be positive and stay strong and just a little bit of advice I guess keeping your mind occupied prevents the negative reaction to an ectopic beat... I listen to a lot of interesting podcasts that get my mind working overtime to try and counteract the ectopics 👍🏻 take care.

Gingernut64 profile image
Gingernut64 in reply to UTFT9

Thank you for taking the time to reply and I’m sorry that you are suffering as well. I am currently on tenterhooks whether to go to a&e or not because they are happening again every 3 seconds. It’s awful!!

I just don’t want to wait hours for the same tests to tell me it’s normal. How often do you experience yours? Are you not on medication now?

UTFT9 profile image
UTFT9 in reply to Gingernut64

Hi, sorry to hear your struggling at the minute... I have been where you are now and have visited a&e a few times over the past 2 years for the exact same reason.

My ectopics just come and go whenever they feel like and sometimes I can experience a long run of them and other times maybe a few a day, I had a particularly bad time over the weekend just gone... got into a rhythm of ectopics around 6pm Friday night and it's now Wednesday and they are only really settling down... I was probably averaging around 4/5 ectopics every 60 seconds sometimes 8/10. I am off bisoprolol now after advice from the cardiologist a few weeks back.

If your having ectopic beats every couple of beats then there isn't any harm in going to a&e and requesting a ecg and hopefully your still experiencing them and they can capture the data and read the ecg to make sure there's nothing else going on. I remember having a really bad episode and ending up in a&e and when I was hooked up to the ecg machine they settled down and wasn't captured and when I was sent back in to the waiting room they started again... it's a really tough condition to live with.

you may feel stupid and don't want to wait long but if your really worried I don't see any harm in going and getting checked over. If you can't relax and are in a heightened state of aniexty then going and getting checked over and explaining your struggling with them is probably best because not only can they capture the data and look over it they may well be able to reassure you which might lower your aniexty?

take care.

Gingernut64 profile image
Gingernut64 in reply to UTFT9

Thank you very much for your advice. I took an additional bisoprolol last night and they settled after an hour so I did not go in the end. I managed to capture an ecg on my Apple Watch while it was happening so I am going to send to my gp in the morning. I got discharged from my cardiologist a few weeks ago which is typical! Will probably take months to get another appointment :(

UTFT9 profile image
UTFT9

Hi, that's good that you have captured some data and hopefully the GP will be able to look into it for you. No harm in asking to be referred back to a cardiologist and this time to a different cardiologist as fresh eyes and ears might help ease your aniexty.

Take care.

Kbkk profile image
Kbkk

Hi, sorry to hear you’re suffering with your ectopic beats….they can definitely feel alarming. If you have a look on YouTube for ‘ Dr Sanjay Gupta York Cardiology ectopic beats ‘ he explains what’s going on and why they shouldn’t frighten you. Although they are so scary and unpleasant to experience his video explaining what’s happening has really made a difference to how I feel when I have them. Hope you feel better soon. All the best, Katie

Gingernut64 profile image
Gingernut64 in reply to Kbkk

This is so so useful. Thank you so much!

gorillaqueen profile image
gorillaqueen in reply to Kbkk

Thank you for this very helpful information 😊🌞X.

Kbkk profile image
Kbkk in reply to gorillaqueen

👍🏻😘

devonian186 profile image
devonian186

As these are recent are you able to identify the approximate date and determine if anything has changed?

That could be a new diet, change of job, new phone or server, different cleaning products, a change of house or changes in your personal life, amongst many other factors.

Have you found anything alleviates them? Drinking from the wrong side of a glass of water, humming, deep breathing etc.

Gingernut64 profile image
Gingernut64 in reply to devonian186

My big change is I’ve started running again after giving birth. This could be triggering it for sure!

devonian186 profile image
devonian186 in reply to Gingernut64

Would you be able to stop the running for a couple of weeks and see if that helps?

If the birth was only recent could be hormonal changes and you could be lacking in certain vitamins. In my experience and many on this board, ectopics seem often to be dismissed by medical people as of no importance, as they ae rarely harmful, but they do cause a lot of distress.

revel_runner profile image
revel_runner

I have suffered from ectopics for more 30 years, since my early 30's. I have always been fit and 'sporty" and still run regularly. I have been advised there is nothing wrong structurally with my heart. Most days I just get a dozen or so and they no longer bother me too much. Occasionally for no reason they will start coming several times a minute and this can least for several days. Then they will go back to normal, again for no obvious reason. These periods are awful but all you can do is tough them out. Lack of sleep is the worse part. Sometimes excercise will stop them also lying down helps. But not always. I have tried various beta blockers and the usual supplements, many suggested on this platform, but nothing has worked for me. I cant find any connection with caffeine or alcohol. When they are bad I try to keep busy, carry on as normal preferably doing something physical like housework, stupid dad dancing to the radio is my favourite, rather then sitting at a desk as it is more of a distraction. Sitting worrying about them is the worse thing. I too am a fan of Dr Sanjay Gupta. He has many you tube videos on the subject and is very reassuring and has many suggestions. Its important not to let them ruin your life.

Gingernut64 profile image
Gingernut64 in reply to revel_runner

Thank you. Lying down flat seems to help a little but bisoprolol seems to help the most. However my cardiologist does not want me on them for much longer so I think I’ll have to tough them out also.

peterjones105 profile image
peterjones105

I am also prone to ectopic heart beats, if I get a disconcerting flurry I breathe in hard, hold my breath for up to 10 secs. and then breathe out slowly as I can all the air that I have held, the process seems to reboot my system and quieten my ectopics.

Gingernut64 profile image
Gingernut64 in reply to peterjones105

Thank you. I will give this a try next time!

Jetcat profile image
Jetcat

hi gingernut, try not to worry too much. Easy said than done I know.!! Iv had them since my early 20s and can really get annoying sometimes unfortunately.!!

They start and can last a full week or more then disappear as fast as they came.😳 although very scary and unsettling they won’t kill you, all I can advise is try getting them caught on a ECG and have a talk to your GP too.

I’m 56 now and still here to tell the tale.👍

Take it easy and take care.

Ron.👍

Gingernut64 profile image
Gingernut64 in reply to Jetcat

Thank you. I spoke to my GP this morning and she’s going to get advice from a cardiologist as I was having 1 every other beat, which I think is too many! How often do yours come when you have an episode?

Jetcat profile image
Jetcat in reply to Gingernut64

I usually average 3 ectopics per minute.!! At worst I can get 7 a minute.!!

They can last a week or 2 and really start winding me up sometimes especially when I’m at work trying to concentrate on my job which involves dealing with the public.!!

My cardiologist isn’t concerned at all and has repeatedly told me they are nothing serious.!!

I must admit though they can worry me sometimes depending on my mind set at the time.

I’m sure you too will be fine ginger 👍

gorillaqueen profile image
gorillaqueen

Hi I’m sorry to hear you are suffering. I am having similar problems which started a few months ago palpitations breathless feeling weak and no energy I thought it was maybe due to side effects of medication which Ive been taking since triple bypass 22. However after seeing my GP he sent me to SDEC as he thought I had ectopic /missed beats. I agree it’s an awful feeling and I was feeling very unwell. I had the normal tests ECG bloods and referred for 24hr monitor and Echocardiogram as one ecg showed ectopic beats, I was also referred to cardiac nurse and will see her again once she has the results. I am in a bit of a catch 22 as I also have Non Hodgkin Lymphoma which the cardiac nurse said can also cause these problems especially as blood test showed low Iron levels. I’m having Iron infusion tomorrow and my haematologist has referred me for aPetct scan. All good 💩life certainly throws us challenges.

I feel blessed that my situation seems to have been dealt with relatively quickly compared to others, even regarding the first step of my GP seeing me. He first called but when I explained my symptoms he said he wanted to see me that afternoon which is good for me but not everyone. There definitely seems to be a postcode lottery regarding the care we need and how long it takes. I hope you get the help you need and wish you well 😊🌞X.

P. S very helpful info from Kbkk.

AAJJTt profile image
AAJJTt

Hi,I started out 5 years ago with a heart attack (nstemi II ), this was my introduction to paroxysmal Afib (the root cause). Treatment - Flecainide; no episodes for 4+ years.

In the early days, before treatment, ectopics were always the harbingers of an Afib episode and my constant nemesis since. I am very wary of them.

I did suffer badly from ‘ectopic storms’, which drove me ‘mad’, robbing me of sleep. Anxiety just enforced a negative feedback loop that descended into more ectopics. They were investigated by my cardiologist, the burden was actually not that high, less than 3% and he wasn’t overly concerned. It didn’t feel like that, sat up and alert at 3am, slavishly watching 5+ pvcs on my Kardiamobile trace. Anxiety is definitely a catalyst and an amplifier; getting control of it, is the way forward. I turned to a course of cognitive behaviour therapy and for a period, an evening sedative. This worked for me, it broke the cycle and it all settled down.

CBT - I was always a bit sceptical about the whole area - talking therapies/mindfulness but it did help; don’t ask me how though 😀 The sessions covered how to spot unhelpful patterns of thoughts, feelings and behaviours and techniques on how to deal with them.

I still have ectopics, daily sometimes, my Afib is vagal in nature and I tend to pick up on ectopics after I’ve eaten. I still have runs of them too, Dec/Jan is always bad for me for some reason and I had a stint earlier this year. They don’t bother me the same and I know I cannot let them ‘get into my head’. I literally give myself a good talking to - “ Ok, ignore it, breathe in, carry on (or in bed rollover), my heart is not going to stop.” As I mentioned previously , it just breaks the cycle of catastrophic thinking (especially at night ) which descends into anxiety and promotes more ectopics.

- Breathing - good too. LSD = long, slow deep. Inhale and exhale slowly (something like 6 a min) with slight pause before exhale. Filling your belly with air (diaphragm) not just raising your chest and shoulders. You need to persevere with this - 5mins, it’s not instant but just breathing calmly slows down you down, allowing you to relax.

At the moment, life is normal. I am currently in a good period of stability and I honestly feel that I don’t have any limitations - I regularly run, climb, cycle and travel but ectopics are ever present to some degree.

I try to keep to the mantra - calm down, they are doing no harm but sometimes it still gets a head of me. Very recently, I had an in clinic cardiology appointment and something just tripped. While doing the ECG by heart was bouncing around like ‘a rock in a tumble dryer’. I wasn’t unduly concerned, I’m glad they got the trace too but it was really my own doing. Got a grip and an hour later and my heart was back to normal NSR - 55bpm.

The mind is very powerful.

Best

bluemoon572 profile image
bluemoon572

I think it would be very worthwhile for you to be evaluated by a cardiology electrophysiologist. Any further testing deemed appropriate would be carried out. After the assessment you'll be educated and advised and you'll have peace of mind hearing all this concerning your particular situation coming from an expert.

Bahamasgirl profile image
Bahamasgirl

Hello, Try not to worry about ectopics. Stress makes them worse. I would recommend supplementing with magnesium. It has helped my ectopics enormously. The glycinate or citrate version is good (not oxide). I hope that helps. Best wishes 😊

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