My Story - skip to bottom for AF question

Hi Everyone

I have just found this site and gained some useful information. My first conclusion is that no two cases are the same. I complained about my heart feeling funny over 5 years ago to my Dr who sent me for an ECG - result no problems. The year before I had been put on blood pressure pills during a well man visit to my Dr because of family history. During the past 5 years various Doctors sent me for ECG's and nothing showed and I was lastly told it was an arrhythmia. I then read an article about power drinks and how bad they are health-wise because they are full of caffeine and alcohol. I stopped drinking wine and tea immediately and the funny heart ceased. It was an eureka moment and when I told my Doctor I was told, "We always recommend this." Never once was it mentioned by the 4 different Doctors I visited with my funny heart - All from the same practice.

Last year (2014) I had a TIA and visited Doctor no 5 who sent me for an ECG because my heart was racing and said return to me before the end of the day because I want to start treating this. I never made it back to the surgery as I was admitted to hospital following the ECG and finished up in Coronary Care where that night my heart stopped. The next day I was told a pacemaker was required and 4 days later I was discharged pacemaker inserted and with added medication of Sotalol and a Statin. In less than a week I was back in because I had disturbed vision tingling in my hands and my face and leg were numb. A secondary TIA was suspected but a severe migraine was concluded after I noticed these symptoms seemed to recur 1 hour after taking medication.-Adalat,Perindopril,Sotalol and Simvastatin. In consultation with my GP we have experimented by stopping Adalat then Perindopril in turn swapping sotalol for bisoprolol. Slight headaches this and that but feeling OK ish. Seeing the stroke specialist last week and he decided Sotalol was better for me than Bisoprolol. Slight hand tingling is back but no disturbed vision or face numbing. I read an article that Perindopril although considered a safe drug can cause aches and pains which I am full of. My Perindopril has now been stopped and I don't know if it's all in the mind but my aches seem to be less (it's early days for a conclusion)

Before my TIA I had been taking Aspirin every day for 20 years (who knows I could have had a massive stroke we'll never know). I had a good diet and kept active maintaining normal weight. I'm told at the warfarin clinic that an Aspirin a day is pretty useless.

My pacemaker is set to 70 bpm even though my resting heart rate was always 50. I'm getting AF once or twice a week now and wonder where do I go from here. I am 68 years young.

A lot of my symptoms are similar but different to many here but each report is interesting to help understand this incurable health issue.

I would like to discover what sets of AF in different people. My specialist last week was surprised when I said a hot shower can set it of but he said he never heard that one!

What sets off your AF?

These are my suspects:

Alcohol (not always), Fish in Batter, Too much Exercise, Too much Sitting Around, Anxiety, Big Meals, Coffee and of course that Hot Shower!

Barry123

23 Replies

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  • Mine are, Anxiety, to much alcohol to quick, sudden fast movement, hot shower, to much exercise, large meal. Combine any and the chances of AF increase.

  • Thanks Nigel. I am amazed that you list hot shower. I knew I was not imagining it. From your list we seem to be on a similar course. Thanks for responding.

    Barry

  • G'day Barry,

    Blunt and to the point .... cause of onset and later triggers for me are two different things. Cause = Electrosensitivity, later Triggers = food. Cause (but I can't scientifically prove it ) carrying my mobile phone in my shirt pocket for about 2 years, set the heart off into massive palpitations. After 2 years of palpitations .... AF ... whiz, bang, wallop. (I drove buses at the time so getting time off work to attend for ECG was always a problem and by the time I did get for an ECG my heart returned a normal verdict !). In Jan 2010, thanks to very smart work by my GP and a brilliant A & E team I was diagnosed and treatment started for paroxysmal AF within 9 hours of onset. I was 65, am now 70.

    Later triggers set me off into AF were food. Always food. I'd get massive bloating, pressure in the chest and on the heart, burping, intestinal gurgling and diahorrea, some foods would trigger this within 2 hours others up to 12 hours. GP got me checked out for IBS and Coeliac Disease - all clear. Offered me more tests which I declined and went to a Nutritionist. As a result she put me on a course of Probiotic powder, suggested I go gluten free and began to follow the FODMAPS diet. I now cannot recall my last AF event ... but it has taken 4 and half years. I am now in semi retirement and still working (part time) driving buses and have no problems passing my annual PCV Medical requirement as required by DVLA before my bus licence is renewed. You wanna ask questions let me know. I do wanna say though, that I've researched my family history and there would appear to be a genetic predisposition to AF. So I don't have a problem with the fact (though again I can't prove it) my genetic predisposition was dormant until carrying my mobile phone as I did and that started a chain of events which I've described. Good luck.

    John

  • Thanks John. Some interesting points in your reply. I have already had a look at FODMAPS and can see it's an avenue to explore. My family history is like yours my brother who is teetotal (since for ever) has similar condition although he can not feel his AF. I mentally recorded 7 incidences of AF but my pacemaker reading said I'd had in excess of 20 episodes. Like my brother I do not always feel them or they are happening during sleep. His was brought on or discovered in the operating room after breaking his hip in a M/cycle accident and surgery had to be cancelled until it was sorted.

    Thanks again for replying.

    Barry

  • Hi Barry and welcome.

    In order to have AF you need a predisposition which can be genetic or acquired. Athletes in endurance sports and fighter pilots are prime candidates for acquiring AF at a younger age than normal. Age increases likely hood of getting it as well.

    Triggers are an interesting one since we are all different. Some people have what is known as vagal AF where the vagus nerve (the neural super highway between brain , stomach and heart ) if suitably excited can bring on AF if you already have the pre-disposition. Others have no connection this way. For many people the search for triggers takes on an almost crusade mentality which in my mind can be counter productive as it can cause stress which in turn exacerbates the problem. For sure, alcohol, especially binge drinking has been known to cause AF let alone be a trigger . Caffeine is often blamed but there is no scientific basis . Not very good for you anyway so good to avoid. I drink decaf tea with no loss of flavour. Energy drinks used to be a staple with me on long drives but now replaced with Lucozade, Strangely cooked cheese (pizza) has been reported as has just about any food you can think of. There is anecdotal evidence that changes to a more healthy life style can have a positive affect on AF but an almost equal number of healthy eating AFers to disprove that. We are all different!

    Aspirin has been removed from the recommended list for AF as has sotalol (NICE 2014). Aspirin has some uses but not as a prophylactic against stroke for patients with AF.

    Regarding your pacemaker I am sure you know already that while this ensures a steady supply of blood round your body and should stop the periods of fatigue and or dizziness it will not stop the AF as this occurs in the atria whilst the PM acts on the ventricle. It does mean that some drugs can be used which would otherwise not be a good idea.

    Bob

  • Thanks Bob. Again some interesting reading in your reply. My pacemaker was originally set to 60 bpm but increased to 70 at my last check up to help reduce my AF (doesn't seem to have made much difference). I started out like you said on a crusade to find out what triggers AF but soon discovered there is no one answer or cure. It has not really changed my life. I swim, walk and enjoy the odd glass of red. I have read about Sotalol and NICE and will raise it with my GP next visit. However I would be interested why Sotalol is the preferred choice for me or is it perhaps on the NHS list because of cost??

    I mentioned Sotalol because it definitely makes my fingers tingle and I am interested to know if my body will adjust to it. I have a dual pacemaker which was inserted in September 2014 so it's early days.

    I am still puzzled as to why my pacemaker is set higher than my normal resting rate of 50 It must be working 24/7 except when I exercise.

    Keep up the good work Bob

    Barry

  • Dear Barry, the triggers you mention affect me but I've not noticed hot showers having any impact. I am wondering if the cold weather is a trigger as I have been aware of not feeling so good recently, especially while waiting for the train on the commute to and from work. My Electro physiologist put me on Rivaroxaban to reduce my risk of stroke, I've been taking it for just over a year without any side effects.

    Like you, reading the posts on this forum has helped me to appreciate how differently AF can affect each person. I have learnt a lot and been appreciative of the support I've received. Wishing you all the best.

  • Bryonny

    I really struggle with breathing cold air and also on heavy pollution days, I dread going back on the tube as I have avoided it last year; I am not sure if this is the AF or the Bradycardia. I breathe through my nose and a scarf to help (I have cotton ones).

    Jo

  • Dear Jo, I have been pulling a scarf up around my nose and mouth, I may look a bit odd but I hoped trying to warm the air a bit might help reduce my symptoms! Like you I have AF but with bradycardia and I am often not sure which part causes me the most problems?

    Since the beginning of December I've struggled with a viral infection, my heart rate has gone up from an average of 45 to between 60 and 70 bpm - will be interesting to see if this is a temporary change or if my rate will stay higher than it has been for over 18 months?

    Hope your return to travelling on the tube will be fine and not as bad as you anticipate.

  • Hi Barry

    My one and only AF occurred with me during a particularly bad and stressful period of my life. I cut out full strength coffee which I was probably drinking too much of anyway got back into shape and started to think differently about things and got a bit better at stress management

  • Hello Barry and welcome to the forum. I have PAF, currently suppressed with Flecainide, and I was able to identify several triggers - one of which was taking a shower! I suspect, however that my nervousness once I had a couple of shower episodes made them certain to recur, so we installed a shower seat and that solved that problem.

    Another trigger was white spirit which I used as a thinner/cleaner for oil painting, plus alcohol - and, interestingly, de-alcoholised wine, reaching high with my left hand and, most of all - stress, worry or fear.

    I've just re-read that list and laughed - but that was my experience.

  • Hi Finvola. I am glad you continued with your reply because that's 3 hot showers so far!!

    Your White spirit has jogged my memory cells because it gives me migraine and this might intrigue you or bore you to death. I suffered with headaches/hangovers for more than 30 years. Just put it down to drinking. It got so bad I that I would drink shandy. Still the headaches continued. My mum suggested that I try to cut out foods to see if it helped. I did this by eating very plain meals adding things as time went on and virtually eliminated my bad heads. I would get the odd head ache but one day realized I had this migraine every Sunday whether I had a pint or not on Saturday. I wondered why this was and deduced it was the cup of tea I had with my friend at his workshop every Saturday and I used a sweetener. A few experiments later and I discovered I was allergic to saccharin. 30 years I had suffered only to discover what a simple solution there was. It explained all the hangovers and headaches I'd ever had and when I got a migraine we would search through the bin looking at ingredients discovering that baked beans, salad cream and a multitude of other foods contain saccharin. As we eliminated products and listed all the safe things I am 100% cured of migraine. Some solvents i.e. white spirit, most aerosols and mustard and horse raddish not to forget roasted peanuts are also culprits for me. I do not eat anything sweet in restaurants and know the safe sweets I can eat at home. My point here is that it took 30 years to discover this and I wonder if a similar thing could happen with AF. Of course not everyone who suffers migraine will be cured by my discovery but I am determined to find out what triggers this AF in me. My experience tells me it is just possible that there is a solution.

    Thank you for taking the time to reply.

    Barry

    PS There is often saccharin in medication coatings and disperseable aspirin is a culprit. Non alcoholic beer really set me off like your wine. AF could be caused by an intolerance of a simple ingredient. I have not been able to work out a pattern like with the saccharin issue. Aussie John suggested FODMAP diet which I am looking at.

  • Artificial sweeteners, especially Aspartame, are culprits as AF triggers too and, you're right, they are everywhere. I spend ages checking food labels and have cut them out totally. It's good that so sussed it out and got rid of the migraines.

    For 5 years I assumed white spirit was the cause of my funny 'turns' as my ECG's were all clear and as long as I kept well away from anyone using it in my painting group, I was fine - until I had a big one and was hospitalised. :(

    I'm sure there are many AF sufferers out there undiagnosed because they assume, like I did, that one of their triggers for AF is actually the only problem they have.

    Best wishes.

  • With me it's alcohol, large meals, too much energy/sugar (in any form), anxiety, good or bad emotions, and also annoying things like watching a rubbish film or having to listen to dreadful music. And lying on my left.

    No problem with work or exercise.

    I don't get anything 'cause of my pills, but I can feel it trying to start.

    Koll

  • Thanks Koll. My list is growing. I have a sweet tooth so have taken note! I also understand anxiety good or bad as I get uptight going on holiday and off it goes.

    What medication do you take?

    Barry

  • Hi Barry, I take Disopyramide. But I've not really got AF any more, I have another arrhythmia but not sure what's going on yet. But it reacts to triggers the same as when I had AF proper, but instead of rabbits or frogs in the chest, I get shakes and wobbles.

    Koll

  • My AF is totally random . I can go for a year , maybe more and then for no apparent reason, it starts up . The first time was back in 1992 .The past 3 months it has been appalling . I have been prescribed 80 mg of Sotalol daily, which to be frank does not help. I also take Ramipril for blood pressure, Naproxen for worn knee joints ( through long distance running ) and Omeprezole to protect the stomach lining. Still taking 75 mg of aspirin daily after seeing a cardiologist 8 years ago.

    I am quite convinced that the main cause of my problem is STRESS .

    AF has also been triggered by yawning and sneezing.

    At my last visit to my GP he tried to persuade me to take either Rivoroxaban or Digabatran. He was up front with the dangers involved, i.e. the non reversible aspect if a major bleed occurs. I am a very active 67 year old and still train regularly , when the AF does not prevent me , either rowing , cycling or walking , so have decided to not take either of the suggested drugs. Life is a gamble is it not.

    Now waiting to see my GP again as a scan last week revealed I have a slightly leaking mitral valve in my heart. Don't know where that is going to lead , or whether that has any bearing on the AF.

  • When I used to get a lot of AF, some of it was described as 'idiopathic' - that is, no known cause. However, I am sure that there is always a trigger of some sort. For me, large meals, exercise, alcohol, caffeine, chocolate, some nasal decongestants all seemed to be precipitants. Sometimes you can blame the wrong thing. I was worried there for a while that sports drinks with magnesium and potassium were a problem. Less sure about that now.

  • I can't pinpoint anything specific which brings on my AF events, although I know I don't react to alcohol or food that I can identify. The last severe attack started when I yawned in the late afternoon while sitting on a lounge.

    Several other people spoke of cold weather. On an angina group I've read a few times, several people say their angina is always triggered by breathing in cold air. They manage best by using a scarf over their mouth when outdoors. By the way, my angina has dropped back to nearly nothing (exertional angina but rarely the night time angina which was very frequent) after I started getting AF attacks. From being woken with 2am (ish) angina four to five times a week, since the AF attacks started in late 2011, the night time attacks suddenly reduced to about one every two or three months.

  • Hi Barry and welcome, it does sound as if you've had a rough ride... Amazing how long it can take doctors to discover AF! Sometimes I think AF comes on 'just because' but triggers I have noticed include alcohol and caffeine, like you. Also if I have to do something majorly stressful I'll usually get through it and then a few days later go into AF. Sleeping on my left side also puts my heart out sometimes and large meals can cause what I think of as 'drum rolls', a couple of seconds of AF. Again, I have a cousin with AF and I think it runs in the family.

    Lis

  • Don't have a shower but have noticed that have had three episodes of AF having just had a long hot bath, I now have cooler shorter baths. Cannot work out for certain any other triggers except I do wonder if when I stop..... it starts. I will explain that comment, on both Boxing Day and New Years Eve I spent the day working at preparing a 'feast' for friends and family, after lots of fun and food (one glass of wine only) - bed, two hours later the frogs were jumping and on Ist Jan they were disco-ing in my chest with the rest of the pond and the forest. Nearly went to A/E but took the Flecainide and it eventually subsided. Horrid.

  • I was diagnosed in 1992 and I have had so many things start my AF I just put it down to it does it when it does it because it can!

    Be Well

  • Hi Barry,

    Initially I think it was high blood pressure and forgetting to take meds that started mine off. Both of those are now under control but too late.

    I think alcohol can be a definite trigger and stress. I used to love Baileys but daren't touch it now; If I'm feeling brave I might have a very small one but normally I wont risk it.

    Hope this helps

    Nige

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