after many years 30+ still unable to accept heart irregularities to be normal and nothing to worry about it is impossible to ignore the fact that my heart is behaving unnaturally and so indiscriminately I cannot understand why there is no cause and remedy for the horrible feeling created every irregularity makes me feel like I am going to have a cardiac arrest but because I only have a1000 or so a day they do not reach the threshold for ablation I just can’t see any positive outcome does anyone else have a similar experience
ectopic beats and flutters - Heart Rhythm Diso...
ectopic beats and flutters
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wbekim
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Yes - similar here and, for sure, the fear of some major event can come into my mind at time when the bumping in the chest is at its worst. It feels much like when I have AF except perhaps with that I can get a sense of racing if the pulse is higher.
The reason it can't easily be treated, I gather, is that the ectopic beats fire off from various places in the heart muscle, with each and every heart cell being potentially capable of firing off to cause an ectopic beat. I have read that where the cause is not "multi-focal" (i.e. from various places) that an ablation can sometimes cure it, but it depends upon where the beats arise.
I bought myself a Wellue 24-hour AI ECG device a year or so back to keep a check on my AF and ecopics when they are at their worst. I find it reassuring.
Steve
Hiya Sorry to hear you’ve been struggling with ectopics for so long. Have you not been offered any medication? Cardio-specific betablockers are first line although don’t work for everyone. I had that experience so am now on Flecainide plus betablockers ( low dose) and the ectopics having been 22% of beats are now very rare for me and I feel like a different person. I sympathise with you as the ectopics can cast a real shadow. All best to you
Hi, just read your post and wondering what dosage of flecanaide and beta blocker you take. I am on Bisoprolol and have upped to 3.25mg. It makes no difference to the ectopics but I am trying to prevent SVTs as well as apparently they kick off PAF which I have just been diagnosed with. Flecanaide side effects sounded scary - do you have any problems?Good to hear of something working.
Sheryl
Hi Sheryl
I take 2.5 mg Bisoprolol and 100mg Flecainide twice a day. Apparently need the Bisoprolol as a safety measure when taking Flecainide. Not aware of any side effects from Flecainide. Dry mouth in the night sometimes maybe??? Just relieved to have something that stops the ectopics! All best x
That sounds positive. I will talk to cardiologist next week.Thank you
Hi there, Yes I absolutely understand where you are coming from. I was diagnosed with them at 18 and now 54, and still struggle with it daily and I am constantly fearful. The majority of the time it is nothing to worry about, but it's the constant reminders of these sensations that make it a struggle and if you are anything like me, I avoid doing so many things I would like to do because I am scared I might over do it, or bring it on. The most subtle movements like leaning forward or to the side can cause it. I recently had a 24 hr ECG and they have now spotted something which I am now being referred to cardiology for, so I am quite concerned. I think it goes to show that if you have a feeling you need more thorough checks, try and persevere to get them done. I am not on tablets as I am considered to have a low percentage of palpitations. It is definitely a battle of the mind over body, so I feel for you. I have had so many ECGs over the years, and ths latest one seems to have caught something which may only happen intermittently, so it never does any harm to get another check. Hope things improve for you.
Thanks for your reply 40 years and still literally frightened to death every time especially as they occur randomly the fluttering is especially terrifying you feel as though your heart is going to stop or continue to flutter and eventually give up the pulling down feeling of the heart also causes immense anxiety I am resigned to having these always and it does not promote any quality of life
Sorry to hear of your ectopic condition. I have also suffered with them for 19 years especially after eating, usually within two hours of finishing a meal. Along with palpitations, they can last up to six hours, usually at night, then for some odd reason, they calm down, and stay calm until later into the next day. I put this down to my stomach filling up due to slow digestion. It seems the less I eat the milder my condition is. My question is, have you tried fasting for twelve hours, providing of course, that fasting would not affect other medical conditions you may have.
interesting that you describe the pulling down feeling, as I get that also just below the ribcage into my tummy, it's horrible I know. I only hope that knowing you are not the only one experiencing this helps just a tiny bit. The anxiety has meant I haven't worked for 3 years now so it is very debilitating.
I have continued to work as I find myself more able to disconnect from my symptoms for a few seconds when having to concentrate on something else the more I explore these sites and hear other people’s experiences the more I think because somebody else is going through something similar it must be normal but in reality that isn’t the case we are all ill and being told just to get on with it when we are probably suffering more mentally than most depressed people
TracyAdminPartnerArrhythmiaAlliance
Hello
It is natural to feel anxious and overwhelmed, and you are not alone as many of the members here have indicated. If you are continuing to experience these feelings, please speak to your doctor or contact the NHS Talking Therapies service for advice on managing your feelings: nhs.uk/mental-health/talkin...
Alternatively, please feel free to contact our Patient Services Team for further support and advice.
Kind regards
TracyAdmin
Iv been having them everyday for the past two weeks. Got a 24 hour ECG in four weeks but I can't wait that long it's driving me crazy. I have a heart condition anyway but my last echo showed everything is ok so I don't know what's causing it. Do you get tiredness and chest pain too. Iv read alot of posts which has reassured me. Lots of calming breathing exercises, and little jobs to keep your mind off it as I think it makes it worse when your trying to sense the next skipped beats.
Yes the apprehension seems to encourage them and trying to accept them as normal is much harder when the symptoms come slightly differently either bump or a bang flutter for a few seconds a squeeze of the heart or a dip drop feeling like going over a hill as well as the general irregular timings of heartbeat and the fast or slow beats a realistic daily amount without me exaggerating would be approx 1500 as the burden required for procedures is around 10,000 I am resigned to living the rest of my life in constant fear
Have you got any appointments or anything to look into it. I know what you been about the dip drop, it is like your going over a bump but instead of feeling it in your belly it's in your heart. I had these funny beats over the weekend and think I went into panic mode and made everything 100 times worse. Chest pain, constantly had my hand on my heart counting the beats. After a few hours I thought, right, I'm going to have a small glass of wine and watch some TV on my laptop, something funny that made me laugh. I can honestly say it worked a treat my whole body relaxed and I felt instantly better for the rest of the night. I know the experts say don't drink or eat rubbish. But nothing else worked so I tried it. Obviously it might not work for everyone but it's worth a try.
Had all tests known to man all came back non life threatening which is great but symptoms never fail to undo that reassurance and periods of relative calm seem to be getting less and less can be watching tv and bang out of the blue flutter thud or flip flop and into panic or anxiety mode unable to concentrate on anything other than heart
Absolutely identify with you. Had mine since I was 36 and am now 74. Episodes have increased over the years and, like you, I can get days when I probably notice 2 or 3 thousand. I also get bigeminy and atrial tachycardia which I find hard to tolerate. Interestingly, when I have a holter monitor there are always many more on the monitor than I recorded! I can't provide a cure sadly. I can be under a lot of stress and get hardly any or completely relaxed and get loads. I take 1.5mg of bisoprolol but not sure it really makes any difference as I can still get thousands. Having a laugh helps... even if you get them when laughing. Someone on here once said that she just sees it as her heart dancing and ignores them. I try and remember lots of others have the same and reading these posts helps me... and that I'm still here after nearly 40 years. Good luck.
Thanks for your reply I agree they are so random and indiscriminate and it is all about acceptance that they are benign but why do we have them and why can we not stop them hiccups and sneezing are not life threatening but could and should you be expected to live with them constantly
Your consultant has probably told you the same as mine did me that having an ablation carries risks and no guarantees that it will be a cure.I guess we have to live with them because there is no simple cure. Although there has been research I think, understandably, more money/effort will go into arrythmias that are life threatening. Have you seen the videos posted by Sanjay Gupta of York cardiology. He's very reassuring.
I get that too randomly. Just try and breathe through it and assure yourself your ok. Try to change the way you think about it.
Wow, this was really great for me to read! I have had 20,000-30,000 ectopics a day for about a year and a half! I just had a successful ablation for the atrial tachycardia that also developed, but I almost cried when they said they couldn't get the ectopics. I am trying a bunch of supplements, but for me, the worst part is not sleeping. They are hard to bear during the day, but at night, I just woke up constantly with it as well. Since the ablation, I have slept finally, because I think that I was having the ectopics and the atrial tachycardia on top of it. I wish I had advice. I think it is really tough and the more it happens , the more aware we become OF it happening. I have met with a Naturopath, tried vagus nerve stimulation, and am trying a bunch of supplements. Even at my high burden, an ablation was not a sure bet. Hang in there. For me, a low dose Propranolol helped at night until it became really severe.
For me it’s as much the indiscriminate onset of thumps flips flutters etc if there was a specific cause or contributing factor in many ways it would at least give a reason for them but to be told not to worry they are normal seems almost like an insult if we did not worry they wouldn’t be a problem
I agree. It is all upsetting and seems like an indicator that something is amiss. I have done a ton of research and there is more and more evidence that ectopics are an indicator and can actually have similar risk profiles as afib after a certain percentage of burden. A good EP WILL take them seriously and not dismiss you. At the same time, however, they also don't really know why it happens. They just know how to fix it. It is very frustrating.
How do they fix it everything I have tried doesn’t stop them
An ablation can maybe fix them, although even with me having 20,000 or more a day, they still couldn't catch them on my ablation because anesthesia turns them off. So if I ever have another ablation attempt, it will probably have to be without sedation. None of the meds have worked for me. I'm so sorry others have to deal with with this. It is truly life altering.
I have just read your posts from 2 months ago. How do you cope with 20,000 plus a day? I am hoping that the supplements you are trying are working and the ectopics have reduced.Good luck
Eva Luna
thanks Eva. I had another ablation on May 10th for the Atrial Tachycardia but they werent able to get the PACs, so,I am still at a very high burden of PACs, 15,000 or more a day. We finally found Verapamil, which stopped them, and then I had a very severe life a threatening reaction, so I am not on anything and back to being miserable. My doctor wants me to try Sotolol again and I am just so anxious of taking any medications at all. I will probably have to go back for another ablation (#3) sometime soon, but am putting it off. I wish I had some solution, any solution,.it is really a terrible thing to deal with.
That sounds awful. I was thinking of asking to try verapamil - maybe I won't!My ectopics have become worse year in year(started when I was 35 am now 74). Also can get, usually short ie less than 20 seconds, bouts of atrial tachycardia mixed with them. I take 2.5 mg of bisoprolol daily but for last week have been going through a bad bout so have doubled bisoprolol dose but it makes no difference. I'm probably getting around 5 to 6000a day and I'm really not coping. It's so random. I can have very few over a few hours and then they kick off for no apparent reason. Cardiologist says I don't have enough to warrant an ablation. I'm pretty fit for my age but I do feel very vulnerable with this and don't want to travel when it's this bad. Do you have then all day every day?
I do have them every day. Unfortunately, mine are worse at night from about 6pm to 8am. I get them some during the day as well. My reaction to Verapamil was VERY rare and I am always super sensitive to meds. It was literally the only medication that ever helped with no side effects. I would give it a try, it is an extremely rare reaction. My concern with another ablation is that I have had two EP studies as well where they couldn't induce them, so I really don't want to do that again. I would love for this saga to be over! I also have bursts of atrial tachycardia. I had sustained atrial tachycardia on the right that they ablated, and the site on the left, I get the PACs and short bursts of Atach. It is miserable. My EP has always believed how miserable I am, but I took a snapshot of my rhythm from my Wellue ECG device and he said that he totally understood how uncomfortable I was after looking at my strip of bigeminy mixed with bursts of atach. It really is miserable. I hope you find some relief as well. I will go for another ablation but I am trying to decide if I have outgrown my current EPs abilities.
Iv been experiencing loads of pvc's, pac's and svt's. Had lots of tests, last one a holter monitor for a week a couple of months ago. 6000 pvc's a day which i get for a period of 24 days every couple of months. Still say it's normal! Still won't give me an ablation.I still worry about them and I know getting anxious about them makes they prolonged and worse.
Iv had these for more than 30 years.
I'm on bisoporlol which don't help during these bad episodes.
They said they would change my meds to verapapril if they still bother me.
Iv learnt to try and do something relaxing while I'm getting them and sometimes they do go. I know it's hard but try not to focus on them.
Hope this helps
Hi Sennen, think it does help to some extent knowing other people have the same issues and have been given the same feedback. So when you're over the 24 days do you get any pvcs etc? Also do you get short bursts of Svt ie 5 to 15 seconds between bouts of pacs/pvcs? That makes me feel odd and I wonder if it could be A fib when it happens a lot. I would be very happy to live with a few dozen a day!!
HiYes I do get eptopics after the 24 day episodes but not as bad.
I can get them every other beat for upto 8 to 12 hours at a time. They still don't worry.
I also use the Alivecor to capture some as this is good to show the medical professionals.
I also get short bursts of svts. They said some could be AF but small episode. Less than 30 seconds.
Going for walks help too. It's good for the mind too and this is why it probably helps.
Every other beat for 12 hours!! When I get it for 5 minutes I think that's awful!You're right about waking. I'm fortunate to have beautiful walks close by and usually walk about 3 to 5 miles a day. I usually find my heart behaves much better then!
Let's hope we can stumble upon something that helps reduce these damn things.
Good luck.
It's crazy. They say it's not missed beats its extra beats.. whether you get them 5 minutes or 12 hours they still are frightening and can cause anxiety.. My cardiologist said to me once, even cardiologists get them and he was one of them. He didn't seem worry. As long as you get checked out and they say they are harmless we have just got to try and remind ourselves of that even though its extremely hard.
Good luck too. Hope you can manage yours well.
I went in to afib 5 weeks ago woke up in the night with the unmistakable feeling hr 145 did the usual doctor ed confirmed af trying to get cv and ablation arranged as highly symptomatic feeling wobbly heart all the time higher hr when doing simple tasks bisoprolol upped to 3.75 hr 90 cannot tolerate the mental state let alone physical but even going private wait is too long
I have just read many of the posts above, and I can relate to every single one of them. I saw a cardiologist over 2 years ago, and he just talked to me, rather than letting me get a word in edgeways. I had written all my notes as a preparation. This time I was going to tell him everything that was bothering me, but he only appeared interested in my halter monitor results. Again, I was sent away feeling like I hadn't been listened to. I waited another year and recently had another cardio appointment. After that long wait, I was only given 10 minutes. He was uninterested in my family history, and within 4 minutes had decided I was just 'anxious'. Having woken up with chest pain on 2 nights since the consultation, I now have to go back again. Like many here, I was initially diagnosed at 18 with ectopics, I am now 55. My symptoms have changed over the years, and where I get them. I now experience the dropping sensation many describe in the centre of the chest, and it seems to go down to the lower abdomen. When I walk, it feels like my heart is suddenly going slow as it drops, and I feel scared to walk at a normal pace. It has also meant I generally feel scared to go outside, and have symptoms of agoraphobia as a result. The only thing I got from the appointment was a request sent for my doctor to put me on 1.25mg of Bisoprolol. I feel too scared to take it as I worry it might slow my heart rate down too much. My smart watch shows a heart rate going down to low 50s, and occasionally in the 40s. I also have blood pressure ranging from mid-90s to 110 on average. Does anyone else here take this medication that already has a slow heart rate or low blood pressure? I think I need to go back and discuss it before attempting to take it.
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