Tempting fate

After years of my AF not being taken seriously (I suspect because I'm relatively young and healthy) I finally got on to the waiting list for ablation. The strange thing is that after I was put on the list and had the CAT scan to track the pathways I've not had an episode and I'm feeling better than I have in years.

I've started exercising intensively and have over indulged in food and alcohol with no effect, all things that were triggers.

Now I'm doubting whether as a self employed main bread winner with a young daughter I really should go through with ablation. On the other hand the consultants have always said it will get worse as I get older (I'm currently 41).

18 Replies

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  • I'm afraid that's how AF usually starts, just with a few isolated episodes to begin with, but the attacks get more and more often over the years. Saying that my sister's AF, just disappeared when she was in her forties. I would urge you to try changing your diet before opting for an ablation. Cut out all foods with artificial additives, lose some weight if you need to and stick to having more frequent smaller meals rather than one large serving. Just because you get away with having large meals at times, doesn't mean that its ok. Also the ingredients in a meal probably play a part. Alcohol and stress can often be triggers too. With hindsight, I wish I'd tried a healthier diet in a more efficient way before having my ablations. Yes, I did it all at one point but very half heartedly. Now I know better!

    I also have a suspicion that the mind plays a part in AF. So many people on this forum will say that when the hospital gives them a heart monitor to wear for a week their heart is exceptionally good, me - I can climb mountains when I wear one! Also the day we go to see our consultant we feel extremely well. By the way despite the fact that I've had three ablations I still have AF.

    Jean

  • I was going to say much the same as jeanjeannie50 . Do try lifestyle changes first. I also wish I'd done it in a more wholehearted way years ago. Like Jean , I've also had 3 ablation s and still get AF.

    You are on the waiting list but do the lifestyle changes. You can always request deferment and see how you progress. Some go down the ablation route too readily.

    Sandra

  • I wholeheartedly agree with Jean and Sandra in respect of lifestyle changes.

    Barry

  • Thanks for your replies. I should have said that I'd ready tried lifestyle changes over the past 7 years and it hadn't helped.

    Im just confused now why the episodes have stopped when I haven't changed anything and now I'm almost testing it by exercising harder than before. Stopping exercise is not an option due to mental health problems.

  • But have you done the diet strictly? Or are you like I used to be and having the odd cake, biscuit and rubbish food here and there? I could almost block out the truth that I was still eating wrong. If I eat any cake now it starts my heart off within the next half hour.

    Jean

  • Probably because you have relaxed knowing you are going for ablation soon.

  • Hi Flatlander,

    Thats the way AF works .... cons you into thinking all is well ... then when it feels like it it'll bite you on the bum. Yeah- it will get worse with ageing!

    I'm one of the success stories of lifestyle changes. Food was it for me, not drinks. No AF now since April 2015. No ablation either.

    John

  • John, remind me just how you changed your diet. Do you take any supplements now?

    Jean

  • Hi there Jean.

    Sure, I'll explain and try and make it a step by step logical account.

    1 After some 4 months or so after paroxysmal AF diagnosis I began relating the onset of an AF event with food I'd eaten.

    2 By some 6 months after diagnosis, and accompanying this 'discovery' I was experiencing massive, massive bloating, intestinal gurgling, diahorrea and burping. Not all at the same time, any one at random, all totally unpredictable BUT the bloating was the most common, most painful .... totally the worst as I could feel it put pressure on the heart - real pressure all inside the chest and on and around the heart.

    3 My GP at the time had me checked out for IBS and Coeliac Disease - all clear - offered to do more tests of the gut. I declined.

    4 I consulted a Nutritionist instead. she carried out a couple of tests and prescribed me a course of Probiotics, the objective being to stabilise my gut flora, and also suggested going gluten free and wheat free. So I just stopped immediately - no more bread. No, not even gluten free bread.

    5 At this time she also recommended starting a course of Bio-Quinone Q10 (100mg dose). Which I still take. that's the only supplement I take. Just can't remember now if it was an aid to offset some side effects of Statins or Warfarin, just can't recall. However, I must say I am 99% sure this has no bearing on my dietary successes and certainly has no bearing on my INR readings at all.

    6 The consultations with the Nutritionist went on for some 4 months. The diet was later expanded to embrace the FODMAPS diet. I found this very hard to deal with but fortunately, didn't need to get into it 100%. I also expanded the original exclusions to include Oats !

    So this was the key to it all. It meant being very systematic, methodical and analytical in terms of the food I ate and in keeping a food diary, yes even down to ingredients. However, even to day I might eat something which disagrees with me - and my 'dietary antenna' soon hones in on what I've eaten and I just eliminate it. I have adopted the concept of ..... if I feel strange in the gut, the lower rib cage or the chest (heart) area I stop that product.

    I have now eliminated all the symptoms that I described above except the bloating ..... that still happens if I eat something - the 'forbidden fruit' so to speak, or actually if I eat something innocently that hasn't previously affected me.

    These days I'm pretty good but I will say that I focus extensively on my heart rate and blood pressure - ESPECIALLY - blood pressure. I wear a Fitbit tracker these days - particularly for when I am working. Right in the beginning, the day I was diagnosed with pAF it was the wide swings and variation in blood pressure ... and the fact that my BP kept on falling and falling that made me go to my GP who cleared me off to hospital immediately where they diagnosed pAf. In those days (7 years ago) my BP was around 136/80 and my heart rate 88 bpm and some. The day I saw my GP my BP had dropped to 90/59. Nowadays its around 126/70 with a heart rate of 65 bpm (average). So when I eat something I shouldn't or if I eat something which hasn't affected me previously and I have this pressure in the chest and around the heart I check my BP and within hours it rises very quickly to around 160/90 while the heart rate hangs in at around the 65 mark. I then feel like total crap and it takes about 5 days to return to normal, and for me to feel better too. I endeavour to identify the food and just eliminate it. The latest gem is Pork - just can't eat the stuff. Occasionally now I have bread - but only that made with sour dough. Salads are right out of the equation.

    So far so good, no AF at all since April 2015. More importantly, even though I can be asymptomatic with my AF at no time since, and maybe a bit before April 2015 have I had to go to my GP or to A & E, or a cardiologist or EP for treatment for pAF. So, yes - I'm now clear of AF (well at least for now). Lol! BUT, I don't trust it. AF is, beyond doubt - pure, pure out and out mongrel. I do have to say though I was diagnosed within 9 hours of onset -YES, WITHIN 9 HOURS AND TREATMENT STARTED - that gave me a big advantage in dealing with it. The AF just didn't have a chance to get a grip of me.

    I hope this answers your questions Jean, if you want to ask more just ask away.

    I hope the Nosh and Natter went well. I was annoyed I couldn't come but was let down by a work colleague. How many people did you get ? do keep me posted as to the next one - if you have any more.

    Best wishes

    John

  • Your symptoms sound as though they were a lot like mine. What sort of foods do you have for breakfast and lunch? I too follow the Fodmap diet and have excluded wheat and lactose from my diet, but still have porridge for breakfast. It's made me wonder now whether I should stop having that.

    You were certainly lucky to have had such quick treatment for your PAF. I seem to get attacks every 4-6 weeks.

    Yes, will let you know when the next AF meeting will be, we thought we'd have them about every three months.

    Jean

  • Hi Jean,

    Funny we should be on this subject but I ate something yesterday which wiped me out. Now this is a classic example of what happens ............. about 1.30 pm I begin to feel unwell in the gut, stomach, diaphragm area, just below the lowest rib. Blew up like a balloon within another 2 hours .... and began to feel like death. Again, true to form blood pressure increased rapidly but only to 141/78 yet heart rate remained in the normal range - 68 bpm - well at least the Bisoprolol is doing its job ! :-)

    This time the bloating didn't extend to putting pressure on the chest and heart area - thankfully. And no kicking into AF either, well not that I noticed from taking my pulse - pulse was weak but nice'n steady and my BP monitor which is designed to detect AF didn't pick anything up either. So I'm sure no AF. But, boy did I feel ill. Ended up lying flat in bed until about 9.30 pm ish when it began to ease off. Then I fell asleep.

    So here is the drama - what did I eat ( and I'll answer your questions later) ........... at first I just couldn't remember. So I started the blame game .... initially I blamed part of my lunch - don't know what it was so I'll describe it - a slice like bread but it was pork, with egg in the middle, surrounded by jelly and the outer bit was pastry. I think its called a Pork and Egg slice, an M & S product (2 to a pack). But then I'd already had the first slice 2 days before. All within use by date. I'm now sure it wasn't that. What else - Aaaaah ! I had a small Cherry Bakewell - again within use by date. Packet says 6, and I've had them over a week but that's Ok then I remember feeling a bit 'off' with the previous ones I'd eaten. Then I looked at the packaging - I bought the wrong product. I didn't buy gluten free - the packaging is bog standard - loaded with gluten, soya and nuts - three major ingredients which are no good for me. But I can't exclude an ingredient interaction with the Pork and Egg slice - the Pork being a processed meat !.

    As Capt. Mannering would say - stupid boy Pike!

    So I now give the Cherry Bakewells the chop totally. And this is the process I've been going through for some 6 and half years now. You'd think I'd have it off 'pat' now wouldn't you.

    Now for your question Jean - Breakfast - a cup of tea to wash down my morning medication. a dish of Rice Krispies with semi skimmed milk - no sugar. Followed by - maybe as long as 45 minutes later - a cup of coffee with two slices of gluten free Schar Crispbread coated with marmalade.

    Lunch - big variable depending whether I'm home or working. At home its 2 slices of the same Crispbread coated with say, Tuna pate and a banana and a glass of soft drink. At work , a break from driving means calling in at Sainsbugs and buying a packaged sandwich -now I know you'll think this odd but white bread with chicken, no mayo in it and a banana and some soft drink. Sometimes at home a few slices of a Baguette with home made soup. Or Baguette touched with Tuna pate or whatever. That's it. when at home, sometimes kidneys on well done white bread toast.

    Dinner - Wow ! My partner ( who is a brilliant cook) regards me as the ultimate challenge .... move over Gordon Ramsay/ Heston Blumenthal, et al - you lot know nothing .....I eat early, and eat small. sometimes as small as a child like portion.

    No pork. In summer a BBQ'd steak, other times, chicken, duck, fish, lambs liver (love offal), stew - oh yes - gluten free gravy made watery. Thick and bog standard gravy sets me off. I don't hold back with veggies at all, usually boiled spuds and all the greenery ( that one is supposed not to have when on Warfarin) BUT no peas and long green beans - runner beans, carrots ... yes to Brussels, cabbage, cauliflower, Spinach, Broccoli et al. but not all at the same time, and usually one veg spread out over many, many weeks. No salads greenery, absolutely no lettuce, maybe a bit of rocket. Spring onions are OK as are Radish, no ordinary onions, so no onions in stew or with Lambs liver.

    Well how about that little lot Jean ? What a bloody mess isn't it ? BUT - no AF !

    Oh I forgot Jean, I also take at breakfast a tablespoon of Arctic Cod Liver Oil 340EPA/510DHA both this and the Bio Q10 were prescribed by the Nutritionist and I acquire them from an independent source (which I'll PM you if you want) NOT FROM a supermarket. Consequently they are expensive.

    Just ask away if you have any other query. It seems like others on here are following this thread, so they'll probably be interested anyway.

    John

  • Hi John, I agree with a lot of what you avoid eating. However, I know that white bread with gluten (much as I love it) would bloat me terribly. Odd because I eat the veg that you don't i.e. runner beans, carrots, onions and none of the ones you do. I think you are eating the ones the Fodmap diet says to cut out? I make a nice gravy with rice flour, red onions finely chopped, half a Kaloo stock cube, the water from the veg and juices of meat.

    Yes please , can you send me the link to where you buy the supplements you use. I'm strict on not having any with too many additives especially Maltodextrin, which always sets my heart off.

    Jean

  • Hi John-I was very interested in your reply to Jean, as I believe my PAF is affected by what I eat. I have gone over to a gluten free diet and I have not had an episode since Jan10th.( touch wood and cross fingers as I say that.) I was interested in the supplement Bio-Quinone Q10. I used to take Co-enzyme Q10, but I take Apixaban now, and I read that Co-enzyme Q10 is contraindicated as it is a natural blood thinner, so I stopped it. You mentioned taking warfarin. Has the Bio-etc had an effect on your INR? My GP doesn't know much about supplements --I asked him about Turmeric and Omega 3 as I read that they were also natural blood thinners. He just said to steer clear of anything that might 'thin' my blood as I was already taking an anti-coagulant.

  • Hi dizzielizzie,

    Glad to hear your good news since going gluten free. I guess you'll be interested in my comments to Jean that I posted just now. I really hope it stays that way for you.

    just checked my packaging for the Bio-Quinone Q10 100mg. In small print it also says " high quality coenzyme q10 supplement".

    I can't comment on the contraindication of this and Apixaban, just don't know but I take one capsule in the morning with my other morning meds at breakfast. This supplement has not had, never had and doesn't have any affect on my INR.

    Oh yes, I also take at breakfast a tablespoon of Arctic Cod Liver Oil 340EPA/510DHA both these products were prescribed by the Nutritionist and I acquire them from an independent source (which I'll PM you if you want) NOT FROM a supermarket. Consequently they are expensive.

    To be honest - GP's are not the ideal people to ask about supplements. Better to have a short consultation with your local Pharmacist.

    Hope this helps.

    John

  • Hi John, thanks for the reply. The good thing about warfarin is that you can have INR checks and you can see if supplements are having an effect on your blood. There are no checks for the NOACs unfortunately. I have fish oil ( Omega 3) which I can't take now and expensive Turmeric ( I got that for joint inflammation.) I think I will have a chat with my excellent pharmacist, who actually recognises me when I go in and asks me how my AFib is behaving itself . Take care and keep well.

  • Wow John, your reply post was fascinating! Very much describes my situation.

    I've pAF but with a hiatus hernia which may complicate things too. I've kind of put my symptoms down to interference with the vagus nerve, rather than allergies to food.

    So the question is, could AF (and changes in Bp) be triggered by allergies to food, as you describe; or could it be food (either spicy food or relatively large amounts of food) Interacting with the vagus nerve.

    I just can't understand why more research isn't done into this. There are thousands of AF sufferers like us, and many must have similar symptoms, so why don't researchers focus on it more. Very strange. Bill.

  • Hi Bill,

    On the matter of Af/ Vagus Nerve/ food allergies, in my opinion they are all inter-related.Just read my latest post to Jean just now - about my experience yesterday.

    In my own simple mind - food allergies/intolerancies - whatever - come first, for whatever chemical reason they either inflame or in some way destabilise the vagus nerve. Depending on our own body make up/structure/ chemical composition/genetics et al .... will there be a side effect. In my case bloating, the heart and kicking off AF.

    From what I've read the Vagus Nerve is the "information superhighway" between the brain and various organs, but particularly the heart and the digestive system.

    At the time I consulted the Nutritionist I quizzed her about the vagus nerve and she agreed. now at the time she received referrals from a Gastroenterologist. I gave her permission to talk to him. His reaction to the vagal nerve being an issue was - absolutely, no doubt about its influence on the heart and digestive system, and other parts of the body.

    So for my money - calm the vagus nerve, calm the digestive system, calm the heart. Simples ! I really believe it is a combination of types of food and quantities and the timing of when the food is eaten that are the triggers. Whats poison for me may not be for you or for Jean or anyone else - it comes back to the mantra that has been posted on here many times - "we're all different". YET - there is still a common and underlying theme - and I really believe - as time moves on issues such as these will become more widespread particularly when farming practices embrace more and more artificial treatments of the soil and crops. and that doesn't even touch on how food is processed in a factory.

    If you can spend time 'googling' vagus nerve there is a shedload of fascinating material now being identified with this nerve - its certainly a very powerful mechanism. There are some great diagrams showing how it wanders through the body. Vagus means wandering. There is hardly an organ that it doesn't touch. I think the problem is with modern medicine is that it compartmentalises the body and doesn't take a more wholistic approach. I think a lot of modern ills - whilst coming from defective organs also originate in the various components of the central nervous system that we don't yet properly understand.

    I think the other problem Bill is that researchers don't focus on our ills (like AF) because there are finite funds available from government or other sources and there is much research competition going on competing for those funds. Those who bang the drum loudest get heard PLUS there is the tendency to focus research on life threatening medical conditions which technically AF isn't. Debilitating yes, but rarely life threatening.

    John

  • I'm 48 and when my AF or Aflutter kicks in, it is always persistent. I too am on a waiting list for a flutter ablation. Previously been DC cardioverted for AFib. I was in NSR following that for 2 years.

    My recent Aflutter began in August last year hence now on the waiting list, however my rhythm appears to have reverted 2 weeks ago on its own (see my "Red or Black" post)

    I too have begun exercising again, although only low intensity at the mo'.

    My personal opinion is that AF is still a relatively new thing in the medical word and I'd like to avoid invasive surgery to my heart.

    However i'm not suggesting that this thing may come back in a few days/ weeks/ months and it may be back as my main option

    Nothing is ever easy

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