I need your thoughts and advice based on your experience.
Background - I was diagnosed with AF four years ago, originally persistent and then intermittent doe to life style changes. I have lost 4 stone in weight (BMI now 29), cut out alcohol, gym 4 times a week and eat healthily, (other then too much liking for sugar). I don't smoke and I do not have diabetes.
Treatment - Pill in pocket has worked successfully for three years, recently in the last 3 months it has failed to revert me into NSR.
Current position - saw my EP a month ago, arranged Echocardiogram and Calcium CT score, with a view to putting me on a daily dose of Flecainide, whilst I am waiting for an ablation (9 months wait) . Got the results from his secretary this morning (waiting for confirmation letter in post). Echo results good, Ejection rate 70% and only mild regurgitation of valves. However, my CT calcium score is 677.
My EP is now saying I am not a suitable patient for a daily dose of Flecainide due to Calcium score and that if the AF becomes too intrusive I could be considered for Dronedarone. He has upped my statin from 5mg to 10mg.
When in AF I feel like I'm running on three cylinders, a bit of brain fog, I still got to the gym and can exercise without too much problem.
Concerned - you can imagine how I am feeling, I'm emotionally in a little turmoil.
- Should I use my savings to pay privately for an ablation, (it would be a big dent in my savings)
- What should my approach be going forward (I'm currently in AF).
- Should I ask for a cadioversion (but if I only stay in NSR for a few weeks, what's the point?)
- Should I ask to go on the Dronedarone.
- Why cant you take Flec with a hight Calcium score?
- Any advice on managing my diet to ween me off sugars
I apologise for the length of this post!
Any thoughts, views, observations would be much appreciated.
Many thanks Steve
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Steve101
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Waiting 9 months or so for an ablation won't particularly affect your heart health. You could tell the Admissions team that you will consider a cancellation too.If you do need to take dronedarone it should only be for a while until the ablation happens.
Flecanide is a powerful drug to be used with attention by medics,due to possible adverse effects. I don't know why calcium is important. One thing,you can only take it if your heart is structurally sound.
Your ejection fraction is excellent, anything over 50% is acceptable ( mine is 55)
You have a lot going on there, Steve - but, congratulations on losing 4 stones, which is no mean feat. I'm a sugar fan too and the only way I know to stop indulging is not to have sweet bars, biscuits etc easily to hand. Fruit has sugar and I usually try to nibble grapes or berries when the sugar crave starts. I read somewhere that when sugar craving starts, cleaning your teeth helps! Never tried it, though.
Flecainide is prescribed only for patients who have no heart disease and a high calcium reading may be a red flag for starting treatment because of its potential link to heart disease. I suppose your EP wishes to use an alternative anti-arrhythmic, just in case.
Wilsond's suggestion of getting on to a cancellation list is a good idea and might solve that problem waiting list for you. I've never had a cardioversion so cannot comment on its usefulness, but perhaps you should discuss it with your EP as it may last longer than a few weeks and give you respite.
When I've had turmoil and worries, I have alway found mindfulness meditation a relief, calming my thoughts and helping me to focus - particularly if ways forward and outcomes are complicated.
The use of flecainide is dependent on there being no cardiac artery disease and a high calcium score may indicate that you have. Short of an angiogram this is probably a good indication.
Dronadarone (Multaq) is an anti-arrhythmic drug but has not enjoyed the success that flecainide has.
What is important to recognise is that any and all treatment for AF is mainly only for quality of life as so long as rate is well controlled and the patient anticoagulated where appropriate, there is no difference in long term prognosis. Many people with permanent AF live long and happy lives.
Regarding sugar, a few years ago my annual tests showed I had clicked over into the pre-diabetic range. I immediately stopped having tea with my sugar ( that isn't a typo!) and the occasional bowl of porridge and sugar and within a year I was back in safe mode and lost about twelve pounds. There is no "cutting down" you just have to stop! Same with smoking. If the incentive is high enough one will do it. My dying mother asked me not to smoke before visiting her in hospital as "it smells awful" That was 1982 and not smked since.
I’m going to reduce my sugar intake. I had the resolve to lose weight so I can do the same with sugar!
I really think sugar is a trigger for my AF. I went to my nephews birthday part Saturday night, I returned home with a large piece of chocolate cake. I consumed that yesterday evening and woke up in the early hours in AF.
Yes cut the sugar. Part of my Lifestyle changes was to cut sugar by 75% & gluten, I have relapsed a bit since then particularly on fruit with natural sugars which may not be so culpable.
Sugar and chocolate both triggers for me. I have a very occasional tiny bit of cake I have made myself . No chocolate in cake or anything else for 14 months, just stopped like Bob said , When I get a mad sugar urge I have a Hovis digestive biscuit only 57 calories . But it’s not a regular thing . Sugar, pure white and deadly , not worth it
When I was 18 (I'm 80 now) I read 'Refined sugar is the curse of civilisation'. I immediately gave up having it in tea - I have not been so successful in other forms - but I tend to be underweight and am not diabetic, so I make that an excuse to eat chocolate and biscuits - I only ever drink one cup of decaf coffee and lots of water. But every so often that warning comes back to me and I go on a sugar free diet to clear my conscience !
Chronic health - used to have ulcerative colitis, not had episode for over 4 years since changed lifestyle
Gym - 4 times a week for an hour, mixture of weights and cardio
Keep active - walking, gardening, bowls
Sugar - biscuits and cake, not much high fat food. Generally two meals a day, btreakfast and evening meal. Lots of fruit, vegetables, kefir. Not much meat now. No low sugar drinks. Drinks - tea, coffee one a day, occasional no alcohol Guinness, water with lime cordial.
Don’t drink much water during the day.
I take a selenium with A,C, E, vitamin D3, nothing with calcium
I have read that supplementing with 200mg of vit K2 daily can reverse high calcium scores. Vit K2 ensures that whatever calcium is in your diet goes where it belongs into bones and teeth and not into soft tissues. You can get zero sugar dark chocolate here in France. The brand is called Bovetti. It is very hard though and I broke a tooth on it! You could also indulge in a little organic honey from time to time. Although honey is like sugar it also has other substances in it which mitigate the sugary "evil" . Also it has been part of the human diet for millenia unlike refined sugar. The best thing is not to buy things like biscuts and cakes. I make cakes from time to time and I always reduce the amount of sugar in the recipe . Dried fruit ( again in very small quantities ) makes a good substitute for sugary snacks. The brown dried apricots are very nice and less sweet than th orange ones.
I have checked out K2 Mk7 and as you say the research indicates that it does indeed put the calcium in the bones rather than in your arteries, which is great. However, I found one document that states dont take if you are on blood thinners as it promotes blood clotting. Ill check out with EP and see what he says.
It is vit K1 which is mainly responsible for blood clotting and which has to be taken into account if you are on Warfarin or another vit K antagonist. Did the document say this applied to DOACs ad well?
What I have just read that it’s up for debate what the recommended dosage should be. In another article they suggested 150 - 180 ug on the basis that this was the dosage most research was based. Should go for mk7 K2 as the natural form and most easily absorbed.
In my memory banks I remember reading about vitamin D3 the book stressed the importance of taking vitamin D3 with a dose of K2, on the basis that D3 promoted more calcium and the K2 would ensure the calcium is laid down in the bones and not the arteries!
How many people supplement with D3 and are unaware of this!
You will see there are many supplements that combine D3 and K2. Going forward that the one I will choose.
But my concern was the suggested daily dose of 200000mcg = 200mg !!! Did you miss that?
I take 100mcg each day, included in a 4000iu Vitamin D capsule, so the suggested daily dose of 200000mcg is very concerning, unless Auriculaire reveals my concerns are unfounded.
I'm not sure I ever doubted the importance of K2, so I'm not sure why you keep ignoring the only query I raised? and which revolved around a suggested daily dose of 200000mcg to reverse high calcium scores.
Even your Doctor Pradip Jamnadas only recommends 200mcg per day.
Thanks for the correction. If you had been able to reply earlier it would have saved me from hours fruitlessly trying to explain to a.n.other my concern over your suggested daily K2 dose of 200mg.
I never answered any of your Post questions in my original Reply to Auriculaire .
My only concern in my reply to Auriculaire was to alert other Forum members of a possibly dangerous dosage for K2 mentioned by Auriculaire as follows ...
"I have read that supplementing with 200mg of vit K2 daily can reverse high calcium scores".
My reply was quickly followed by your reply to me ...
"... it’s up for debate what the recommended dosage should be. In another article they suggested 150 - 180 ug ..."
... and this reply completely missed the point of my submission (ie. the incorrect suggested dosage units). As did all the rest of our exchanges.
Sorry, I don't have any special expertise in K2 or calcium, so am not best situated to answer your other questions.
Apologies if I allowed my exasperation with the course of our exchanges to become obvious. As a poor excuse, it's very tiring writing long descriptions for an extended period of time on my small phone, the only device I have.
Good luck in your further research.
PS. Yes, I saw your linked video on K2 yesterday, as I indicated when I mentioned the dose he recommended in the video, but you seem to have missed that.
I'm seeing my EP on Friday. Now on statins, what that does is calcifies any plaque in the arteries to make it more stable (less likely to drop off and cause a blockage), your calcium score actually increases when you go on statins as a result of the calcification! I will also talk to him about taking Vitamin K2. Ill let you know what he says about K2. I am confident you can take K2 with DOACs but not warfarin.
A high calcium score on CT scan suggests your coronary arteries are a bit clogged up, hence the higher statins dose and the refusal of Flecainide which can’t be used if you have CAD. I don’t know why a CV hasn’t been suggested but I would ask. If it works it shows successful ablation is possible and could make the wait bearable if it lasts. As you’ve been so successful on the diet and lifestyle front I wouldn’t beat yourself up too much on the sugar craving but try to cut down slowly. Best wishes ❤️🩹
First and foremost Steve, well done on your life changes, which I find highly commendable, the weight loss will certainly help your heart health and overall wellbeing, As for sugar, I too am an addict and the best way for me is to have sugar free products albeit they do contain xylatol or saccharine. I have had A/F for over 20 years and am still here to tell the tale, i've had a stroke, i've had an unsuccessful ablation. not all ablations work and I had put off having one for years, wear a pacemaker and so it goes and personally I think the main cause for me was stress, starting mainly when I lost both parents within 6 months, one to an RTA, plus the stress of a senior management job and 140 staff lol. The reason I am telling you this is because whilst body management is good you also have to look at lifestyle, trying to cut out the things that trigger your A/F. As regards medication, the cardiologists now have quite a selection of suitable drugs in their armoury so it might be worth asking for an alternative to Flecanide. I started my journey with Flecanide and in my experience the selected drug only lasts approximately 12 months before the condition over rides the drug and I have been through most of them over 20 years. Now, approaching 80, it is all about quality of life and the drugs I take now are achieving that in the main together with the pacemaker. I don't know much about the 'calcium' problem and wonder if there is anyway you can reduce its level in your body, maybe a little research on this and A/F in general. Science and medicine are moving along all the time, my grandson is a consultant bio medical scientist and I am amazed at its progress, one day hopefully A/F will be a thing of the past. Good luck x
Stress is certainly a trigger for me, without going into too much detail, we have been worried about our grandchildren, two of which are autistic in a marriage that is breaking up. Once you get one stress in life it can be like a rolling stone and other lesser stresses can add to it if you are not careful. Been doing nightly meditations. My rock is my wife she is my best friend and soul mate.
I took heart from your post because of your positive attitude.
I have paid to see my EP for a private consultation (Friday), so I can get a more informed position on how I move forward. I will then play the hand I have been dealt and look to move forward positively (can be easier said than done).
Thank you for your reply. You can see your main trigger in that first sentence and, I like you, I worry non stop about my children and their children. My eldest son's marriage broke up when the two grandsons were at a critical stage in their education and it was me that actually aided them in their studies, choices and getting them into universities, both now working successfully in their chosen professions. I too have autism in the family, namely Asbergers but all high end and again, all working and living successfully. Marriage breakups are always stressful and sadly does impact upon the children, the only thing you can do is be there for them, a safe haven if you like, someone they can talk to and share with and the same goes for the couple who are breaking up. I have been married 63 years (yes a child bride lol) but I know that marriages do not always work out but the outcome should always be to protect their children from the fallout. Thank goodness we live in an age of great technical communication, keeping us in touch with our loved ones.
Keep up the good work of maintaining your body weight and exercise but be careful not to overdo it in the gym, walking and fresh air wonderful as is gardening and they are all therapeutic and helping you to forget all issues, at least for a while. Hopefully your medics will help resolve the issues that are concerning you but from the results you mentioned above you are in good shape so try not to worry too much because that just won't help!!! Take care of yourself and keep us posted x
As and when the need comes, I will look carefully at the laprascopic type ablation in Japan but the issue is whether your view is its quite straightforward or there is too high a risk of complications & more expense in Japan.
A cardioversion is worth considering as you may stay in NSR until you have an ablation., especially if used in conjunction with an anti arrhythmia med such as Donedarone or Amiodarone. I'm coming up for 2 years in NSR this following cardioversion and Amiodarone. I'm not waiting on an ablation as I'm awaiting a valve repair.
Steve I’ve had 3 cardioversion’s in 2 years it’s no big deal the first lasted 4 months on no drugs the second 10 months on very small dose of metoprolol and then 3rd 4 months same dose of metoprolol. I’ve now added about 25mg of Flecainide which I took prior to CV and now for nearly a month post CV it apparently helps settle rhythm but also helps the CV process. I'm in sinus since CV and looking at other options like ablation and mini maze for down the track. With supplements I paid extra to get my magnesium and CoQ10 levels checked and I was low in both especially CoQ10. I’ll be interested at the one year mark to see if they’ve increased. I’ve worked on all my triggers and even raised the head of the bed 4 Inches and sleep with 2 pillows, I also sleep on my right side. I mention all this in case any of these are your triggers and you’ve not realised
I have been on PIP for over 20 years and it usually works with varying time lengths. Yesterday I went into AF and took my PIP but it didn’t work I then took another 100mg of Flec and it still didn’t work, 24 hours later it hadn’t worked so I took my PIP again which consists of 2.5mg of Bisoporil followed by 100mg of flec an hour later. This time it worked. I just feel that we are left out on a limb to Medicate ourselves at times. As regards paying privately for an ablation, myself I wouldn’t as I had an ablation a few years ago and it only lasted a few months, it is not always the solution.
Hi, re cardioversions I've had 3 and 3 ablations. Cardio's lasted on average 13-14 mths, ablations, first 2 lasted less than 4 mths. probably depends on individual, but I'd say worth a try.
"Any advice on managing my diet to ween me off sugars"
You've demonstrated your ability to make serious changes to your lifestyle. If you really want to stop eating added sugar then you need to be prepared to tough it out for 3-10 days after which your cravings should have subsided. First thing you have to do is to get rid of all the sugary snacks you have around the house. If it's not there you can't eat it.
I used to binge on sugary foods but used to burn the calories with exercise so at worst I've only ever been slightly overweight. When my sister was diagnosed with type 2 diabetes I started testing my blood glucose levels (higher risk of getting it if sibling has it). I was borderline pre-diabetic. That combined with a bit of research on what my sugary snacks were doing to my body was enough incentive to try cut out my sugary excesses.
I've drunk diet sodas (artificial sweeteners) for years but largely swapped them out for Kombuchas and naturally flavoured mineral water.
I didn't totally eliminate added sugars from my diet but chocolates, cakes, donuts, chocolate biscuits, ice cream etc (all of which I ate regularly) are all gone and I no longer crave them.
My main vice these days is muesli bars. I target ones with low sugar content and initially restricted myself to one per day, normally as dessert following evening meal (which reduces blood glucose impact.
In the first 5 months I lost about 8kgs - and I wasn't trying to lose weight. On the contrary, I had to work to stop losing weight when I got down to 76kg (188cm). Almost a year on and I've slackened off a little bit and might have 3 or 4 muesli bars some days but they are still low sugar(<4gm, 4gm=1 teaspoon). I've levelled out at ~80kg +/-2kg (my weight varies by up to 2 kg on any given day depending on the time of day i.e. whether I've eaten (rarely eat breakfast and haven't for 40 years), eat a lot in the afternoon/evening), whether I've been working hard outside for hours (generally get a little dehydrated) and whether I've been to toilet (number 2's) that day.
I didn't try weening off sugar, I went for wholesale change from day 1 and then relaxed a little when I well and truly had it under control. My only real breakout was eating homemade Rocky Road chocolate at Xmas. I'm fairly certain it caused joint pain in my hand for several days (like gout) - which in itself was enough to ensure I don't do that gain!
YMMV but if you put your mind to it, cutting out sugary foods could be another major positive step for your health.
I don't stick to one sort. I chop and change depending on what's available, specials etc. I like variety.
In Australia, a lot of food products have a health star rating, with 5 being top rated in a category and 0.5 stars, the unhealthiest. I look for ones that are <4gms sugar and a high star rating usually 5 star or maybe 4.5.
we’re all conditioned by the marketing genius’s to consume vast amounts of sugar…not our fault. But we can wean ourselves off it. I thought because I am fit and not overweight etc I could get away with eating the worst kind of sugar… cakes chocolate and the rest.
As soon as I got my AFib diagnosis I cut out the sugar. As other wise owls have said on here, you can do it! The craving for sugar goes after a week or so. It’s an addiction like any other, so best thing is to stop completely not just cut down.
Still have triggers that set off AFib but sugar ain’t one of them!
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