Does anyone else have this kind of afib? - AF Association

AF Association

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Does anyone else have this kind of afib?

Matt40
Matt40

Hi there - I’m told I have a rare kind of afib where my atria is ‘impressively irritable’. In other words despite 2 ablations one on 2017 and another in 2019 my adobos/ectopics/tachycardia is fired from the wall of the atria itself rather than the pulmonary veins which have been tightly isolated. I’m stuck at the moment on 12.5mg of Atenolol and I don’t seem able to get off of it - with constant ectopics if I do. Not sure really what to do and cardiologist/EP not very helpful. I’ve tried cutting out alcohol- no change, cutting sugar - no change, cutting out salt - no change. I’m told to exercise and I walk for 45mins a day and am doing 30 minutes aerobic excercise - but this is usually followed by runs of atrial ectopics which are very symptomatic and make me very dizzy and lethargic. Has anyone been able to overcome this? Thanks in advance - looking for a little hope.

Matt40

12 Replies
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Sit tight Matt!There is a wealth of knowledge here and i would be surprised if you do not get responses.

I think I have heard of it - there was a presentation at Patient Day 2019 by one of the EPs - I think from Imperial? Talking about this type of Persistent AF and the difficulty in treating it through standard ablation. They went on to talk about a trial they are doing where they ablate the outside of the atria, through a small chest incision. I’m sorry I cant remember much more but perhaps someone who actually took notes maybe able to help - or even ring the AFA - they maybe able to give you more info?

It was a trial I think so this treatment won’t be generally available.

I found this on Imperial site spiral.imperial.ac.uk/handl...

Thoracoscopic surgical ablation, a relatively new technique, with the potential to improve clinical outcomes in AF, has yet to be evaluated in a head-to-head trial in LSPAF.

I seem to remember the point that was made was that they were able to reach the hard to reach parts of the atria from the outside which would have been too dangerous to attempt to do by vein catheter because reaching these points internally would mean burning too close to esophagus, vagal nerve & phrenic nerve - but that’s only from memory.

Matt40
Matt40 in reply to CDreamer

Thank you CDreamer - that’s very helpful

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When you tried "cutting sugar" you might not have gone below your sugar threshold for triggering afib. Here is the data I have accumulated over the years. Give it a try and see what happens:

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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 (afternoon) 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 Thyroid - 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:

https//cardiab.biomedcentral.com/a...

How much sugar do you need to stop your afib? The answer is about 1/2 of what your daily sugar limit (threshold) is. My sugar threshold is about 80 grams a day right now. So if I go over that (and it's sooooo easy to do) my heart will start to afib. Then if I cut back to about 40-45 grams of sugar for one or two days, then the heart goes back to normal rhythm and stays there until I exceed my daily threshold of sugar again. (moderate exercise will shorten that time frame). I have gone 30 days under my sugar threshold with no afib once just to prove it is the sugar. And I have consumed my daily limit of sugar every day after going into afib and it stayed in afib for a week - just to prove that worked. So - as long as you know what your sugar threshold is you can control it, but that takes several weeks of experimenting to figure out. I use the following WEB site to know how much sugar is in different foods:

fatsecret.com/calories-nutr....

If you find that your sugar threshold is lower than 50 grams a day - it's nearly impossible to eat less than that each day, which will keep you in permanent Afib. If this is the case, try going to a Nutrition Response Tester. I am doing this and she has improved my gland processing such that we have increased my sugar threshold from 48 grams a day to about 75, which is high enough to stay under - and keep afib from happening (unless I indulge in a sweet something – which I do too often). I'm hoping we can get my sugar threshold over 100 grams a day, and if so, that would pretty much stop any afib from happening again (assuming I consume less than 100 grams a day which is not too difficult to do). If I have success in achieving this, I will post it on this forum. If you are on any harsh meds they might be altering your metabolism and something else could be causing your afib. In that case, you will have to really listen to your body and experiment to find out what is triggering your afib. I'm pretty sure it's some gland or secretion in the body that results in sending mixed signals to the heart - not the heart itself. Hope this helps.

Hi Matt. There is something calked the maize procedure. It invokes opening up the chest to get to the heart so quite invasive surgery. Look it up as I believe it is used in your sort of case. Hope this helps. Take care

Failed ablations means just bad luck really and that the area was missed--I had 3 ablations and some changes for the better on the 3rd time round. Persistent Paroxysmal A-Fib is still the diagnosis, it is probably more a guess calling it atrial a-fib --I have had it over 30 years now, sometimes still annoying-- have to keep hydrated, very careful with alcohol (occasional beer, max 1 beer two to three times a week max), We all have to eat less sugar but sugar does not seem to be. a culprit in my case, almost anything can trigger episodes--moving the wrong way, suddenly climbing stairs, turning over in bed, fatigue, stress etc etc. I already have the pacemaker in so can take higher doses of Beta-blocker as needed and apixeban. What do you mean by runs of ectopics-??-when they run in sequence it is more significant, mostly they are one at a time then a pause but can be say 10/minute each one with a pause, if you get runs of ectopics no wonder you get dizzy.

Matt40
Matt40 in reply to jrd210

Hi there thanks for the reply. With my ectopics it seems to be when I exert myself and i’ll get a few ectopics in a row - for say 30mins maybe every 5 mins then they go. I always take my BB at 11:30am as that’s the first time I took it but then about an 2 hours later almost without fail I get the ectopics again and what feels like heart electrical pops and bumps, like something’s going on all day until late on in the evening when it starts to drop away again. I think it could be the Atenolol and maybe Apixaban making me dizzy as my cardiologist thinks I could have had AF for a long time but I was symptomless. These ectopics have only started since I had my first ablation and since I started taking all the drugs. I’m slowly weaning off of the Atenolol, I was on 25mg and I only went onto this BB as I couldn’t get on with bisoprolol as it made me fuzzy headed and tired, I persevered for a year before changing over to Atenolol. Sort of a little stuck as all my ECGs come back as normal

Matt40
Matt40 in reply to jrd210

Sorry meant to say that my EP called my Ablation a success but how can that be when I’m still getting activity and still taking the drugs I was taking before albeit less?

I have a similar situation. My EP quietly calls it atrial cardiomyopathy, lol. Are all you on is atenolol?

Matt40
Matt40 in reply to Jt222

Hello yes on Atenolol and Apixaban

Matt, you might need to request a holster monitor to pick up these ectopic, the analysis will be useful to distinguish atrial from ventricular ectopics and count them, when ventricular ectopics are in runs it is not good. Yes the EP doctors like to say ablation is successful when it really is not, only the patient really knows the result.

Matt40
Matt40 in reply to jrd210

Been told that from my Kardia and a trip to a and e a while ago they are atrial ectopics

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