I’ve suffered with EB since I was 30 , been back and forth to Barts over the years, usually get told there not dangerous, but they have turned into a fluttering that feels like my hearts stopped and the blood doesn’t go to my head and I feel the grey mist coming over me but never fainted, i went to see consultant last year , yet again told same thing ..but my dads heart nurse thought I had AF and should be on a blood thinner..but the consultant said not 😏 they did take me in for ablation , but tried to bring on extra beats but nothing happened sod laws...
But iam really fed up plus anxious, had a real bad week of non stop night and day , no sleep , so my doctors sending me back to Barts ..Jan appointment
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Deary63
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Sorry to hear this, did you say you went for the abalation but couldn’t get your heart in irregular rhythm? Are you on any medication for it? Does anything you do in particular bring on the extra beats? I suffer from AF had my abalation 13 weeks ago going through skipped beats at the moment they are horrible no matter how Unharmful people say they are
Hi yes went in about 9 years ago, but they couldn’t trigger it 🙄
I was given Flecainide when I as in my 30’s helped but was taken off them as they was causing heart attacks ...but last year consultant told me to try them again when I have a run of extra beats...I hate taking anything as theres usually side affects, and iam stressed enough when I have bad turns..
Yes I’ve been reading on here a lot of people suffer the first few months , I feel for you but fingers crossed they will subside for you..I think I might push for having the ablation again when I go back in January as Iam so fed up with this awful feeling in my chest and when I have fluttering .. it’s good to read there are so many of us in the same boat and hopefully reassure each other in some way 😊
Hi, I can’t see anywhere if you have had a holter test for 48 hours to see exactly what is going on. The benefit is that you would get a proper diagnosis to see if it is “just” ectopics or something more. I know that ectopics are very difficult to isolate for ablation unless they are constant, but at least you could have a definitive conversation about ways to alleviate. Flecainide and beta blockers are sometimes prescribed but only to lessen the impact rather than stop ectopics completely. If there is evidence of AF or flutter then that’s a different conversation.
I have never heard of blood thinning medication but I'm sure you mean anticoagulant medication such as Aspirin.
When I was in South Africa I was told to take half a 350mg Aspirin when the ectopics are bad or when the tachycardia starts.
In Portugal the cardiologist recommended that I take no Aspirin at all
Now on NHS here, I was prescribed 75mg Aspirin to take daily. No higher dose as it may cause stomach ulcers or bleeding according to the cardiologist.
There are 2 schools of thought on this at the moment.
Aspirin isn't recommended for AF, most of us are on either warfarin or one of the new anticoags like Rivaroxaban or Apixaban. You can calculate your CHADSVasc score to see whether you need anticoagulation but doctors won't prescribe it unless you've been diagnosed as having AF, which can be hard to identify unfortunately.
I have a friend whom I'm sure has AF, because I checked her pulse and there was only the familiar box-of-frogs wriggle, but even a Holter monitor didn't pick it up. However, getting that score may ease your mind in terms of whether you might need anticoagulation. What's the phone app you can get to check your pulse? AliveCor, Kardia? If you can get a record of your pulse when it's irregular and show your doctor that would be helpful.
Give this a try and see if it works for you:
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After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer (this is why all doctors agree that afib gets worse as you get older). If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt?? I also found that strenuous exercise does no good – perhaps you make yourself dehydrated??
I'm pretty sure that Afib is caused by a gland(s) - like the Pancreas - or an organ that, in our old age, is not working well anymore and excess sugar or dehydration is causing them to send mixed signals to the heart - for example telling the heart to beat fast and slow at the same time - which causes it to skip beats, etc. I can't prove that (and neither can my doctors), but I have a very strong suspicion that that is the root cause of our Afib problems. I am working on this with a Nutritionist and hope to get some definitive proof in a few months.
Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer
PS – there is a study backing up this data you can view at:
Hi you have a good point , I get them worse when iam snacking and put weight on, when I diet and don’t pick at sweets they go off a bit 🤔
Also when I was younger and was getting them really bad around my periods 😬 I did ask the consultant at Barts if hormone’s could have anything to do with it, he did run blood test every month to check but nothing jumped out at him!!
Just curious - when you were younger and got afib around your periods, did you drink less water/liquids around your period (perhaps in thinking that would make your periods shorter or more moderate?) or did you eat more sweets around your periods - a rise in hormones might make you more hungry?? I have heard this before from a doctor, but I failed to ask him these questions, which, I'm sure, he wouldn't have thought to ask his patient anyway.
Me. I have permanent AF am 61, enjoy a very active life (I cycle at at least 10 miles every day) and I don't take any medication -- on the advice of a cardiologist.
In my case any problems were driven not by the condition but by my perception of it. So, for example, to start with I slept badly because I was a bit anxious but now I sleep well.
Since you exercise a lot, make sure you force yourself to keep hydrated. Here is the data I have put together that might help you:
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After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer (this is why all doctors agree that afib gets worse as you get older). If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt?? I also found that strenuous exercise does no good – perhaps you make yourself dehydrated??
I'm pretty sure that Afib is caused by a gland(s) - like the Pancreas - or an organ that, in our old age, is not working well anymore and excess sugar or dehydration is causing them to send mixed signals to the heart - for example telling the heart to beat fast and slow at the same time - which causes it to skip beats, etc. I can't prove that (and neither can my doctors), but I have a very strong suspicion that that is the root cause of our Afib problems. I am working on this with a Nutritionist and hope to get some definitive proof in a few months.
Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer
PS – there is a study backing up this data you can view at:
Yes I am going through the same at the moment. Have more or less been told have to live with it. It’s the most awful feeling. I am taking Flecainide daily 100 mg x 2 which suppresses them a little and makes them not quite so noticeable. Unlike yourself I have only been suffering these for a couple of months and keep praying that they stop as suddenly as they started. Maybe they can have another go at an ablation for you, they are miserable ☹️
Hi I was just reading your posts from a few months ago, so I take it you have seen a consultant now about extra beats?
I’ve been there where you are for over 30 odd years , I have really bad days , actually had an awful week, a month ago, funny enough after I had steroid injection in my hip , I’ve had 3/4 before but never had the reaction like I did this time , my doctor didn’t think it was the injection , but it was odd , I never slept for nearly four days as my heart was racing , stopping , fluttering In the end I thought I was going to faint , plus I had pain in my left arm(which I always get when my heart misses a lot ) but also pain in my face on left side, phoned 111 they called paramedics out and took me to A&E , frightened life out of me 😨.
The doctor at hospital told me after blood test and talking to me about my life style , that I wasn’t having a heart attack plus the ectopic beats weren’t dangerous( if I had a pound for every time I’ve been told this I’d be rich) he said it was my stressful life, but recommended I get my heart checked out at Barts again, so I’ve got appointment in January , I never seem to get anywhere, they always reassure me it’s not dangerous , but it doesn’t feel that way...sorry I gone on , just trying to make you feel better , your not on your own , you can always message me if you need to talk .
Give this a try and let me know if it works for you, too.
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After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer (this is why all doctors agree that afib gets worse as you get older). If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt?? I also found that strenuous exercise does no good – perhaps you make yourself dehydrated??
I'm pretty sure that Afib is caused by a gland(s) - like the Pancreas - or an organ that, in our old age, is not working well anymore and excess sugar or dehydration is causing them to send mixed signals to the heart - for example telling the heart to beat fast and slow at the same time - which causes it to skip beats, etc. I can't prove that (and neither can my doctors), but I have a very strong suspicion that that is the root cause of our Afib problems. I am working on this with a Nutritionist and hope to get some definitive proof in a few months.
Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer
PS – there is a study backing up this data you can view at:
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