Been a fair while since I posted on here. I've now just turned 50 and started my AF journey at the young age of 37!
A lot has gone on but I feel like I'm stuck in this vortex of pretty well educated on AF but still very unsure about it.
I've always seen Leeds based Cardiologists/EPs who are very good, plus sometimes the Arryithmia Nurses (who seem a bit more inconsistent).
Background is someone who did loads of exercise and training as a kid, right through my life, including to the present day (for example I was on my road bike Sat; and climbing a peak on Sunday).
I used to take a PIP for over a decade (1.25mg of betablocker) but then the episodes where becoming more frequent, so i'm now on 50mg of flec, twice a day.
I'm convinced that I have vagal AF and that my triggers come from that, plus gut symptoms. Whenever I get bloated, a bit windy or a food type doesn't agree with me, it seems to kick off ectopics/bit of AF which lasts a few hours up to a few days.
I feel stuck in a cycle of how much exercise should I do vs. what I eat vs. is the Flec making it worse or does my dose need upping.
Its bloody frustrating. Trying to get an appointment is tricky too.
I have RBBB and Bradycardia (from fitness it seems) and a resting pulse between low 40s to low 50s.
Anyone else face these conumdrums?
Thanks
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Harrison1
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At such a young age why don't you consider an ablation? Just a thought, may rid you of the problems overall. AF is almost always progressive and as you get older could be a consideration
Yes its been offered but the success rate isn't really good and the thought of it freaks me out tbh. My mate had 2 which weren't overly successful and hospitals/operations makes me nervous.
Where are you, in the UK? Where have you had your information from ref success rates? My EP told me that whilst my AF was paroxysmal it was much easier to treat and success was likely to be around 80 to 85%
I had mine 12 months ago on Wednesday to be exact and have had no episodes that I am aware of since. No one was more scared than me and I nearly backed out several times even when I was waiting to go into the cath lab, but I didn't (thanks to the support from this group) and it was the best decision I made. Long may the beast stay away from my door 🤞
Well I've been on this forum since January 2010 ... I've read it all on this forum from assorted people over those years.
So, two things stick out ... 1) you give the impression you are an exercise addict, and 2) you really do appear to fall into the vagal category.
So, my advice - from someone who loathes and doesn't participate any form of exercise - unless at Glock 19 gunpoint - who has led a fairly/very unhealthy life .................... is to moderate your exercise programme, revert to say, just 'ticking over' AND go consult a Nutritionist about diet ... you will most likely find a change in diet is recommended starting with removing, Wheat/gluten and oats from your diet. Any one or maybe all three, and that would be just the start. It isn't a quick fix and needs some discpline. But I do stress this is just the start of what can be a long BUT very effective process.
My journey through medication over the years suggets that Flec is one of the latest drugs to be used and is the last in the daisy chain. I've had tests for it and as a consequence I am approved for it BUT haven't yet needed it.
Don't waste your time with a GP - a Nutritionist is the way to go. Try and find one who is maybe late 40's/early 50's with some real life experience under their belt. Perhaps have a look at the BANT website for a Nutritionist near where you live.
Sure. Indeed I was too as oats are naturally gluten free. However, just about all we eat, in one small way shape or form has a farming, transportation, processing and/or storage aspect during its journey from field to the human gut and in this journey there can be some contamination in some or at any stage. Coeliac UK website has some useful info on this matter. In my case with all three products I heeded the advice of my Nutritionist and ditched the lot. Over the years I have been able to return to wheat in its many formats, i.e. Chocolate Wheaten Biscuits but not so oats ( and I love porridge ) as oats gives me quite dramatic diahorrea. So, these days I don't even bother with gluten free oats.
Of course the other aspect with farm products, apart from contamination is famer spraying during the growing season of the product. Supposedly SAFE ......... but how do you know !
I found over the years that it isn't just the food product per se that causes the problem with the gut BUT infintesimally small ingredients (traces). Learned all this with my Nutritionist back in the day.
I also learned this from my bus driving days when driving little tiny tots at primary school. I was asked ( as in, told ) not to give sweets to the kids to celebrate end of term as many sweet products, like a well known Roses brand ( but not exclusively so ) contain traces of ingredients which can seriously upset some of the young ones ..... like nut traces.
So, on balance, giving up such produce is the way to go .......... hardly blood curdling dynamics but in giving stuff up I stay safe. I hope this helps - thing is though, its my personal experience only and many other good folk will have a different take on this type of journey.
Latest thinking with oats is to go for steel cut (pinhead oatmeal), to avoid spiking your glucose levels. You can also mix with oats bran and seeds to provide some protein.
you sound like me, i was first diagnosed at 35 and always had a great Med diet thanks to my parents. Played football my whole life until 58! i was also an avid runner but knees are crappy now so ocean ski paddler and indoor bike is now the go. I managed to get to 64 with only 5 or 6 episodes since 35 years of age. I would get my self back in sinus with some short sprints or jump into a cold shower. My triggers were noted since 35 which are alcohol, caffeine followed by exercise and overeating and more recently i've correlated the HSV virus with my AF a few times. No drugs in the first 29 years.
In 2022 my episodes became more frequent 4 or 5 in the last 3 years and couldn't self convert due to bad knees though the indoor bike got me back to sinus in December, all other episodes were cardioverted. So what did i do to mitigate episodes..
I took myself off to do bloodwork about a year ago and found i was at the bottom of the scale for Magnesium, VitD3 and Coq10 so started Supplements. I've gone to zero alcohol beer and only an occasional sip of wine and decaf coffee. I stayed well hydrated as low electrolytes bring on my ectopics which in turn can kick off my AF. I sleep on my right side with a slightly elevated bedhead.
12 months ago i started on lowest dose of metoprolol. The Cardiologist said its not for my HR which was around 65 but to tamp down the adrenaline spike that sometimes kicks me into AF or ectopics. I also started Flecanide 25mg twice a day.
So at this point in time i indoor cycle about 15km once a week walk 4 days a week 4km and paddle one day a week and do reformer pilates twice a week. I try not to hit HR 140bpm and have set watch to alert me. The problem is i feel great sometimes and just carry on daily life but occasionally i forget i have triggers and dehydrate or go to exercise while i have a cold sore(HSV) and can get ectopics/AF.
I don't know if there's different types of AF in addition to Vagal... my AF which is symptomatic only goes to 80-90 at rest. BTW i eat porridge or bircher every day and add a date and a good dusting of cinnamon as its a good anti-inflammatory and our AF hearts don't like inflammation.
I'm now 67 and may consider an ablation later if things become more frequent. Im hoping new technology which is being trialled now will make ablations far more accurate as they will be guided by MRI catheters developed by Aussie company Imracor.
James...thanks. I hope you don't mind me saying, but you sound like an older version of me.
Your freqencies were less than mine. My AF is very symptomatic for sure...and most of the time its hits 80-90 too.
I love dates and have 2-3 a day, plus oats, walnuts, peanut butter etc
I get ectopics too. Early morning...tiredness...a but dehydrated...sometimes spins into low level AF.
How do you manage adrenaline spikes? Not so easy! I drink AF beer, sleep on my right side and have drunk decaf for 12 years. I was going 4, 5, 6 months with no episodes...now I'm lucky to go 7-10 days.
I do think my gut is a big part and some foods. I love Kimchi but that and healthy fermented foods I read are a trigger...what next!
Drives me mad. The last issue is work...I'm a senior player in Sales so a fair bit of pressure 😞
Well I heard that too so my gut health you might say is an old Greek way which warm lemon water first thing then nothing to eat for 30-40 mins. I also have yogurt which seems to help. Definitely pressure can be a risk factor. Your morning episodes maybe a little dehydration as you say
I'm with BenHall1 on this one; particularly moderate the exercise substantially and then build back as circumstances decide and consult an experienced Nutrionist. Be prepared to open your mind on many foods including oats.
I am narrowing down my vagally mediated AF to 80% triggered by the brain and 20% by the gut. Still working on the solution!
Flecainide at the right rate (100mgs x2 medium dose for me) has been effective; this is a relatively tried and tested heart drug suitable for many.
More discussion with a trusted cardiologist/EP, privately if funds allow, as you are much younger than most here and that will affect decisions.
Firstly...thanks. Reducing the exercise isn't that easy when its a huge part of your life! I don't push like I used to, but I don't toddle along either.
Maybe another chat with an EP could be good. The ones in Leeds are excellent and going private again could be an option.
I'm open to foods but I'm veggie too. I love nuts, seeds, pulses, beans but some make me gassy and it seems to knark the AF.
My recent Qrisk score at 50 was 7%, mainly due to the AF...but I want to push that down too.
Its so complex. Its quite fascinating, but more hugely frustrating.
Well done you are on it, so now it is down to persistence and be encouraged by the thought that changes could benefit your overall QOL, it certainly did for me.
You increase your risk of other cardiovascular conditions if you remove exercise altogether. It may be time to moderate it a touch though and I totally understand that is not as easy as people often think.
I have a genetic condition and have been forced to stop exercise after a lifetime of sport and activity. I’m now facing a high bmi for the first time in my life and of all things, I am now on a ‘diet drug’ to bring it down purely because of the risks it carries.
If vagal in origin, do small meals more often work for you? I agree that a nutritionist maybe a good step just to help you work through the issues around diet. I’m about to see one even though I’m a very healthy eater and understand nutrition well - I once owned a fitness centre/gym. As I said, I’ve lived a lifetime of health but my conundrum is: how do you maintain weight purely through diet when you can’t expend energy through exercise? Hence the nutritionist whom I m hoping can use her expertise to talk through some ideas and give me advice on nutrition dense, low energy foods that can be eaten in small amounts.
There are parallels between you and me. I have a low RHR (low 40s), and happy with that. I do plenty of exercise: road biking, gym, skiing, hiking. I started on min dose flec with bisop to try to stop AF coming on halfway through bike rides. After a few months it’s settled to v few AF events (less than once a month vs more than once a week previously, and much shorter duration. 1% load vs 25% before). My Oxford EP keen for me to stay fit and happy with all the cycling. My view is that it’s because I have a fit heart that I can tolerate being in AF quite well.
Two points for you: one, I don’t push endurance cycling quite as hard now: I’m happy with up to 100km rides now, not 100 mile ones. I rarely choose to go out with cyclists who are a lot better than me. And two, if AF strikes, I’ve a medical ok to add another 50mg to my regular does as a PIP. This brings me back into sinus within 4 hours.
Like you, I’m queasy at the prospect of an ablation. My concern is the 1.5% chance of a really bad outcome.
Cheers. A lot of relateability. I don't even do 100km now. I sit between 40-70km but thats enough...plus its very hilly here and into the Yorkshire Dales so its a good session. I haven't asked about taking a tad more if needed but I will.
One thing to bear in mind, and I'm quoting my EP here, is that the sooner they start more aggressive treatment (ie ablation) the sooner you run out of options. So, to illustrate, Ive had four ablations in the last five years (would have been 4 in 4 but I chose amiodarone to give me a break) and if this latest one hasn't worked they can only put me back on amiodarone. I also took forever to recover from each one. Getting back to running was 4-9 months though I was cycling sooner.
I think they only measure the success for 12 months! So if it takes six months to get over it that six months afib free. Having said that, you may be one of the annoying ones who is doing Parkrun or whatever after two weeks. I'm just slow (like my running 🤣🤣).Best wishes
Re your "pretty well educated on AF", and as an alternative to a catheter ablation (I understand your hesitancy there), and considering your vagal concerns, have you ever looked at Dr Wolf's minimaze procedure (although he has changed it's name now)? If not, I recommend you read up on the procedure on his website ...
And he has a library of his monthly live videos on AF on the Houston Methodist DeBakey Cardiac Education channel on YouTube as well.
I mention this because there is a Dr Hunter who works out of Sheffield, close to you. Others on the Forum (incl Mummyluv) have had maze type procedures with him, and would be able to share their knowledge.
I also recommend the Posts written by Saulger which detail his journey to Tokyo to undergo a similar maze procedure with Dr Ohtsuka, a colleague of Dr Wolf ...
Very interesting post and I feel your frustration.
I think you're extremely well informed and are clearly very healthy in lifestyle and diet.
I disagree with some of the replies saying stop oats, etc, etc. I do agree with you it sounds that diet is a big part of it with you.
My experience. Heart rhythm issues since 15, SVT, Afib, etc., a lifetime of learning. But still the sands shift! And one thing we try to believe we can overcome is ageing. It took me a lot of reluctant acceptance that it happens!!
I exercise but accept I must exercise less. It's a kind of non-negotiable with my body or it protests. Steady rhythmic exercise is best and I need to put a time limit on it.
Cold weather greatly decreases my limit.
I eat treating food as medicine nowadays. Above all, to maintain a healthy insulin sensitivity. That's been my biggest success of all. I eat only quality carbs and, for example, buffer my porridge oats (which as you say are very healthy!) with fats - so add flaked almonds, flaxseed, etc. and make with 0 carb almond milk. I eat far more healthy fats (crunchy peanut butter, perfect!) and am totally consistent in avoiding sugar spikes. I accept it as a price I need to pay for NSR. I have zero cheat days as they mess things up.
I drink AF beer but not any kind as some are high in sugar. I like Impossibrew hazy pale (online, only 27kcal a can). The occasional whisky with healthy food is OK but generally I avoid alcohol, and wines are an absolute no go!
I have no problem at all with caffeine and coffee and it's my treat I guess!
I do take Flecainide (half a 50mg tab in morning, 1 50mg tab at bedtime) and bisoprolol (1.25 - 2.5 depending on stress, etc.) and feel like I could probably do OK on less Flecainide but at this dose I don't seem to have any issues.
A higher dose of Flec definitely made me more vulnerable *especially during exercise* to worse arrythmias and if I got an Afib episode while on higher Flec I had to do... nothing. So, less is more!
I've not had an ablation and I've not had much Afib at all, none for months, since shifting fully to a 'kind of diabetic style' diet. Feeling great, exercise to a limit, and accept certain things are behind me (I'm a decade older than you).
HI Harrison, BTW, I'm also gluten free, and did you know that you can buy gluten-free oats? Nature's Path Organics is one company that sells them, and I've seen others. All best wishes for NSR!
Hi Harrison, You are to be commended for being so athletic. My experience is similar, but not at the same level. I am now 68 yr and feel the same as you noted in your responses below about ablation. I am on Eliquis blood thinner and take Flecainide and metoprolol as a PIP. So far this works well. but I did a carful charting of symptoms and causes and was able to identify the causes. Caffeine, alcohol, pseudoephedrine, niacin, sudden temperature changes (warm to cold), meds for asthma (which I don't have, but was given during covid), Covid vaccine and sudden stress. so I would suggest that if you are still concerned about ablation that you keep really careful notes to get a good handle on your triggers. I wish you all the best from North Carolina (I was in the eye of the hurricane and got through that with NO A fib!).
I am going to track food and types more so...sleep...or poor sleep is a trigger. I forgot to say...i use my kardia pad which is useful by my chads score is 0...and I'm not on blood thinners (which at times unnerves me not having them).
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