I first started having ectopic heartbeats 4 years ago. The initial episode lasted 4 months and stopped as suddenly as it started. I’ve had them intermittently since that time sometimes lasting a couple of weeks- sometimes a bit longer but 5 weeks ago they returned with a vengeance and feel completely different.
I’m having groups of 3 and 4 together (new to me) , long runs of very fast irregular heartbeat which I’ve been able to pick up on my Kardia monitor- sometimes waking me up at night.
If I sit completely still I get nothing. The moment I move - even if shifting position they start. Walking, cleaning teeth, getting dressed- even eating.
I managed to get a private video appointment with my cardiologist. Sent him some of the Kardia readings. He didn’t seem at all worried. Didn’t feel any further tests were required and suggested Flecainide which my GP won’t prescribe.
They really are getting me down (putting it mildly) and I feel like they are ruining my life at the moment- I’m getting frightened to move!!
Anyone else been in a similar position or any tips?? Thank you!!
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Daisee1963
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Hi Daisee....I'm going through exactly the same thing...I've had pac's and pvc's the last 28yrs off and on. Back in late March they returned with vengeance...having skipped beats all day and night AND FELT DIFFERENT TOO...had monitor for 2 weeks, upped my beta blocker and they vanished...only to come back this past week worst than ever..?????..I'm absolutely depressed about this as well...calling electrophysiologist again tommorow...I'll let you know....
Hi Anjolive. Sorry you’re in the same position. Did you have any luck with the EP?? I just wish I knew what triggered them as sometimes I’m ok and then out of the blue they start. X
I’d had ectopics off and on since my early 20’s - used to get really panicky about them because sometimes they went on for weeks. Had them investigated a few times -I even got admitted to hospital once when they were so bad I went to A&E and to my astonishment they admitted me, where I sat up all night waiting to die and I didn’t. and they discharged me the day after saying there was nothing wrong. Anyhow I know how terrifying they can be but I’ve learnt to live with them. Ish. I had a really bad spell about 4 years ago- they came out of the blue but were constant like yours. Are you menopausal at all, because that can really start them off? I think that’s what did mine. After 3 months of hell they just stopped. I too went to a cardiologist and they said nothing to worry about. Have you tried cutting down on caffeine, alcohol, eating healthily etc etc? Lack of sleep or low blood sugar sets them off in me. Also I think they are gut related sometimes - there’s some connection with the vagus nerve. I used to find that if I was having a bad spell then a full tummy would make them so much worse. If you have been seen by a cardiologist and he’s not worried, I would try not to worry either (hard I know) but the adrenaline and cortisol will make them worse. If you are offered drugs to try and stop them be wary, because some anti arrhythmic drugs can provoke more serious arrhythmias. You’ve probably heard all this before but I do think that it’s best to try not to obsess about them (I was certainly guilty of that). I do know that a lot of people just don’t get it unless they too have suffered. Hang in there 😊
Thank you Loversghost for the advice. At times I can ignore them but every now and then I get obsessed’ almost by them and they literally take over my life. I try so hard not to let it happen and try to keep telling myself they are not harmful but every time they do something ‘different’ I think there must be something wrong with my heart etc etc .
I get so cross with myself.
I went through my menopause 9 years ago but I will say I often get kind of hot flush feeling and 30 seconds after that big runs of ectopics. I’m sure anxiety is a huge driver . I’m doing everything I can to keep calm but it’s just not happening at the moment sadly. I’m really worried about taking medication but can’t see a way out of this spiral at the moment! I gate to think what my adrenaline levels must be at the moment which of course isn’t helping x
Hi Daisee, I would agree with Loverghost, and have very similar experiences, with anxiety, laying a certain way in bed, and the gut issue, which often comes right out of the blue. From what I have researched and seen on here, many people suffer with palps caused by indigestion. The vagus nerve I believe is connected in some way to both the heart and stomach, so it can sometimes trigger palps. I have suffered ectopics since 18yrs old and I am now 51, it never really gets any easier, but like most, you go through phases where you seem to cope better and then sometimes it's hard to take your mind off them. If you haven't seen the videos, there are some good ones by drsanjayguptacardiologist.c...
he has quite a few videos worth watching. I would always say that if you are still concerned get checked again, but also do all you can to relax and it really can help.
First off why will your GP not prescribe flecainide? I have a history of having up to 10,000 pvc’s a day. Had an ablation and was free of PVCS for 2 years. Then they started up when I moved to a high altitude. New Electrophysiologist started me on flecainide last year and it is wonderful. I have to go in for a ekg every 6 months and that is it. See if your electrophysiologist will prescribe for you.
Hi Daisee1963, I know how you feel it really sucks and can be scary. I first noticed ectopic's/pvc's while working out a few years ago, fast forward to last year and an emergency room visit after dealing with several days of non stop runs of ectopic's I saw a Cardiologist. They put me on a halter monitor and that came back saying I had 2600 ectopic beats in those 24 hours and that was feeling much much better than when I first went to the emergency room. I had an echocardiogram, then a stress test with another echocardiogram both of which showed my heart to be normal. My Cardiologist did not seem worried at all and told me I could start working out again and that if I wanted he could prescribe me Metoprolol to take when I felt my ectopic's were getting bad, I declined the Metoprolol. I started taking Magnesium supplements after reading about some people having success reducing ectopic's with them. I take 120mg Magnesium pill every night after dinner and so far I have not had another experience of terrible ectopic's for days on end. I do still get them every day but they never last for more than a few minutes. I still don't like the fact that I get them at all but what my Cardiologist said is that most people get them but never "feel" them or suffer any symptoms from them like getting lightheaded, and that some unlucky people who are hyper sensitive like us apparently feel almost every single one of them. Bottom line is he told me ectopic's are common and 99% of the time benign and if your heart is normal and healthy otherwise they are no cause for concern. That being said I do now have a standing appt with him every year so he can make sure they are staying benign and nothing else is going on. So for what it's worth I found Magnesium to work for me, not sure if it's a placebo effect or it's actually doing something for my heart but my Cardiologist told me he see's no issues with me taking it if it seems to be helping me.
Hi Zaskar. Thanks for your reply. This run has been for 6 weeks now and it’s non stop. Anxiety levels have gone through the roof which isn’t helping at all. I so wish I was one of the people that didn’t feel them!! I started to take 125mg of magnesium glycinate yesterday so will see. How long did it take to have an effect?
It took a few days, I initially started off taking 500mg then worked my way down to 125mg over time. I still get them in fact right now im having them in trigeminy meaning im getting 2 normal heart beats then an ectopic beat, feels really shitty but I know they will go away. The past couple of days they have been more active than most days. Every time I get runs like this I just keep thinking about what my Cardiologist told me, that my heart was normal and these things would not kill me, helps to calm me down. Though in the back of my mind there is that little voice that's always there whispering that my Dr might be wrong and that all the tests missed something blah blah blah. I just have to shut that part of me down or I get panicky and that does my ectopics no good lol.
Take your shoes and socks off and stand on grass, sand, cement, etc to Earth yourself.
Some people are very sensitive to electricity in their immediate environment and it plays havoc with their electrical system until they Earth themselves.
Wow As I’m reading your post and I thought I was reading a page out of my own journal from 2015. I know exactly the desperation and feeling that life is over. The electrophysiologist I was seeing when I began having the same symptoms as you just kept telling me that it was not a “fatal arrythmia” and to just live my life. Like you, it seemed that any movement sent my heart into the same rhythm you describe- I felt breathless and scared. I finally realized that my doctor just didn’t care and sought a second opinion from a different electrophysiologist. This new doctor put me on a 30 day heart monitor and the diagnosis became Atrial Tachycardia. He started me on Flecainide. I was scared to death to take it ( don’t read the insert if you ever are prescribed this drug). As a matter of fact, I didn’t take it for awhile. Then I decided I really had no life the way it was so I bit the bullet and took the medicine. It has a been a miracle drug for me!!!! All the misery just stopped and I had my life back. I still get occasional ectopics but so far it has curtailed those constant “runs” and it has been 5 years. I have read that after awhile the drug can become ineffective but I’m keeping my fingers crossed that it doesn’t happen for me. Best wishes to you and I hope you find relief. By the way, I did not have to start the Flecainide in hospital as some literature recommends. I do have an EKG annually. P.S. I also started out with ectopics just like you did, I would get something like 10 a minute for about 4 or 5 months. Then, just disappeared. I’d have little spells where they would come back but I also had breaks that could last a couple of years.
Hi Daisy1963. My ectopic beats started November 2019. My iWatch alerted me to go to my GP as my heart rate kept going down to 35-40 bpm and the ecg reader on my watch came up inconclusive. I was getting so out of breath when walking to work, I just didn't feel right. I was referred to a Cardiologist in Feb. Had a 24hr ECG and Echocardiogram last month which picked up a high amount of extra beats. I do not have exact figures but at least half of my heart beats are ectopic everyday. There doesn't seem to be trigger to mine. They just happen pretty much all the time. Sitting, standing, laying down, exercising.
My Cardiologist advised the echo showed a weak heart muscle with right and left ventricular systolic dysfunction and I am awaiting an MRI scan to look into it in more detail. They have suggested ablation may be the best treatment. I have also been put on Bisoprolol but the tablets do not seem to be making it any better.
If the cardiologist doesn't think they are anything to worry about, that's good. However, I know how frustrating as you think about them all the time.
Thanks LoopyLou. My worry is that they feel different somehow this time but maybe that’s just me. It’s been 4 years since I had an echo and a year since I had the last Holter monitor which only picked up just over 600 but I was hardly having any at the time (as happens!!) I never used to get them when I exercised but now do and I’m getting runs of 3,4 and 5 all together which feels horrible. Good luck with the MRI x
I was having 30,000 to 40,000 ectopics a day and was told that this was not life-threatening by my GP. Medication got it down to 20,000.
This is not intended to frighten you , but think about it... my ticker was getting so many messages about when to beat it got totally confused and I ended up with heart failure at level four and I felt as though my life was over.
A video I saw on here by Sanjay Gupta said that if I could reduce my ectopics my heart could heal itself.
I did - and it did!
I now get a "normal" amount of around 300 ectopics a day and my HF was at level two last time it was checked and is gradually getting better.
I just started earthing myself. Some people are more sensitive to electricity/EMFs than others are and I think we will see an increase in problems as 5G is rolled out.
Our tickers work on electrical impulses which is why we do ECG's etc to measure it.
By Earthing myself I gave all the excess electricity/EMFs a way out.
If you want to try it when you can feel the ectopics just take your shoes and socks off and stand on the earth. (Grass, sand, unpainted concrete, etc)
You should start to feel the difference almost immediately but keep going for 20 mins or so and you should feel a lot better. If you do this just before bedtime you should also sleep better too.
It worked for me so I bought an Earthing mat and can now earth myself indoors too. I use one to rest my feet on when I'm in bed and I have a smaller one that I use as a mousepad.
I'm so convinced that I bought 100 packs and, after giving some to friends and family, I now sell them on ebay.
I was given ramipril and nebivolol. I have (with GP monitoring) reduced my nebivolol by half to 2.5mg a day and my resting heart rate has gone up from about 50bpm or less to nearer 60bpm.
The main thing I've done to improve things in general is to start Earthing myself as much as possible.
Your travails sound all to familiar. My experience was total hell — my quality of life in the gutter. So it finally came down to choosing the lesser of the various evils. I decided to gamble with Flecainide (100 mg twice daily). I experienced immediate relief from my PVCs and a complete suppression of my AFIB. It’s been eighteen months now. I will let another six months pass. Then lean on my cardiologist to prove to me that my heart has not lapsed into the drug contraindicated zone, eg the onset of structural damage. Unfortunately there is only one way to find out if you will be among the 95% for whom Flecainide has helped. Some of us to a miraculous extent...
Hi Daisee....sorry I haven't replied last 2 weeks...my electrophysiologist did give me a 48 hour monitor last week which I sent back in this past Wednesday...now waiting for results...sigh...this has been the worst 5 days with these ectopics...I'm averaging over 600 per day lately where the last 4 months I was only getting a handful per day...and it's also all day and night...worse when I lay down for sure...I added another 20mg of nadolol to bring total to 140mg per day but it hasn't helped...did you try the flecainide? I was gonna ask my doc about trying it because this I killing me mentally...
Mine have been awful too. I’ve ended up paying privately to have a 7 day monitor done. In the past by the time I have waited for an appointment they have calmed down again. This time the monitor will have picked up all these episodes I’m getting of fast irregular that are waking me in the night plus the high activity levels through the day which I’m so pleased about as I’m sure doctors have thought I’m mad in the past!!!!
I have been so down lately and I’m trying so hard to ignore them like people advise but struggling like mad.
I’m waiting for my follow up with Dr Sanjay Gupta and will then decide if Flecanaide is the right pathway.
Mine happen every time I move, eat, stand up or bend over. If I stayed dead still and didn’t move a muscle I would be fine 🤦♀️
I have had the odd ectopic beat for ages but in June it started to happen with more frequency. Went to my GP who suggested I increase my Atenolol from 50mg to 75mg daily. For a month or so it seemed to work but then it started again on and off for most of the day. Went to A & E twice had ECGs a cardiac enzyme blood test but all was fine. Still felt very anxious so decided to visit a private cardiologist who performed an ecogram which showed a completely normal heart and subsequently also had a 24hr holter test which showed about 3% of PVCs. Cardiolgist suggested to put me on a trial of Flecanide 25mg twice daily but then decided to sent me to see an electrophysiologist before putting me on the meds. In the meantime I went for a second opinion to another cardiologist who after revising my different test results concluded that I didnt even need to see an electrophysiologist and that in his opinion these premature beats are completely benign and nothing to worry about. Still going ahead with the appointment to see the specialist and even though I am much more at ease about the whole thing it still gets to me whenever I feel the flutters and the skipped beats. They happen at random its like my heart is going in and out of turbulence but actually to me it happens more when I am sitting down or lying in bed and less so when I am active. I dont get an irregular fast heart rate on the contrary my heart rate is on the slow side but guess thats the effect of the beta blockers. I strongly suggest you go to Youtube and check out Dr Sanjay Gupta from York Cardiology. His videos will help put your mind at ease as he explains loads of things to do with ectopics like few can. I understand they can cripple your life in more ways than one so I am glad to be of help.
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