Izzle: I'm a newbie here. I've had... - Atrial Fibrillati...

Atrial Fibrillation Support

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Izzle

Izzle profile image
42 Replies

I'm a newbie here. I've had paroxysmal AF for 21 years and have an episode every couple of weeks. It lasts about a day and apart from reduced BP and mild aura migraines I don't get any of the nasty side effects. I consider myself lucky in that respect.

Since I'm not serious enough to have an ablation I wish to take more control of my triggers, my main ones being eating, bending forward and stress. Any tips would be appreciated.

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Izzle
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42 Replies
Pollywaffle10 profile image
Pollywaffle10

HI Izzle, I am 77 and had long term PAF. Have you tried meditation for stress? Eating smaller meals and chewing your food very well. I had AF more often when I used to eat bread, and could feel it going down! Lying on your right side seems to help too. Have you considered trying Magnesium Taurate? Many people have found that it can help.

Finvola profile image
Finvola

Hello Izzle and welcome to the forum.

Various people find various things trigger their AF but there are some which seem to be common to many of us:

Stress, large meals and bending forward are on the list, as are -

Alcohol, chocolate, high sugar foods, artificial sweeteners - colourings - flavourings, processed food, garlic, onions, taking a shower which is too warm, not drinking enough water and on and on.

Recommendations from various AF experts suggest a diet low or leaving out some of the above, low in red meat and high in vegetables, fruit and fish. There is help and advice on the main AFA website at

heartrhythmalliance.org/afa

Incidentally, I found that reaching above my head with my right arm triggered SVT but not when I reached with the left arm - you can go nuts trying to identify them!

dave1950 profile image
dave1950 in reply toFinvola

Izzle, sounds very similar to me. I've only been diagnosed for 18 mths but with hindsight think I've had it longer. I'm getting mine every week to 10 days and it lasts about 36hrs. After all the initial fears of strokes and full heart tests I just try and ignore it now as it only has the same effects as yours does. I am on Apixaban for the stroke risk (I'm 67, no other risk factors) and Soltalol which does nothing other than reduce my resting pulse from 58 to 48. I'm not one for dwelling on these things but it winds me up that I can't find the triggers. I have decided that anything that changes the heart rate suddenly is the biggest one. So definitely anxiety, even slight like watching a tense TV drama, exercise or getting over heated and possibly food but it's pretty random. I do have a lot of sugary stuff and artificial sweeteners but otherwise a good diet and those things aren't causing anything else.

My biggest issue is I have had a gall bladder operation cancelled because of it at the last moment just as they wheeled me in and also a knee op postponed. It seems to scare the hell out of anaesthetists despite having letters from the cardio specialists saying don't worry about it. Of course this has caused me stress so every time I go for the op it brings on the AF.

By the way I get (rarely these days) migraine with aura which I inherited from my mum and my daughter and grandson get severe hemiplegic migraine which includes aura and speech loss and partial paralysis for a few hours which is awfully frightening.

Dave

Yachtgirl profile image
Yachtgirl in reply todave1950

You mention Sotalol does nothing except reduce your pulse rate from 58 to 48. Perhaps a suggestion you check with your cardiologist why you are still taking it if it does nothing else. Maybe he can explain if it is helping you in any way, if not could he explain why you are still taking it. Sotalol is a 'dirty drug' perhaps research that on Google. I am not a doctor. I am a registered nurse previously specialising in Cardiology before retiring. I reluctantly took Sotalol for 6 months before collapsing from the unwanted effects from this medication so I am biased. I take no medication now for arrhythmia or AF and have managed most of the time very well. Certainly meditation, breathing techniques and avoiding triggers help. Good luck.

Harfly profile image
Harfly in reply toYachtgirl

Hi Yachtgirl,

I hope you don't mind but I was the same as you with Sotalol the damn drug nearly killed me with breathlessness and extreme fatigue. I have now been on Amiodarone since December and having had an ablation in June I am to reduce my dose and will eventually be off the drug in November. My EP Consultant has asked me to start Bisopropol once I stop the Amiodarone. I am feeling quite worried that they make me feel like the Sotalol....any advice. Thanks

dave1950 profile image
dave1950 in reply toYachtgirl

There lies one of the problems. Conflicting info from the experts. I go to one of the top cardiothoracic hospitals in the Country (UK) and the EP's there have said that Soltalol is a very safe drug with rarely any side effects. I've had none so far. It is a trial period for me and I am on the lowest dose. We discussed a higher dose but I don't really want my heart rate down to 40 or below. What it probably does is take the peaks off the higher rates and I do possibly feel slightly better since taking it with possibly less ectopics when it is in sinus rhythm. When I say it does nothing I mean in the preventative sense although other benefits seem marginal.

Izzle profile image
Izzle in reply toYachtgirl

Thanks for your response Yatchgirl. My experience with sotalol was they needed to increase the dose to keep the balance of my pulse in AF vs normal sinus rhythm. At each change my BP reduced and I needed to get used to it. Eventually I got near to the maximum dosage, so they took me off it.

I've started yoga but not too much into the meditation yet. Breathing techniques such as those in 'brain-gym' seem to delay the next AF but a little early to say it's a consistent result.

kellie111 profile image
kellie111 in reply toYachtgirl

Hi I am 144/96 pulse85 I think that I have only had 1 AF I just rested for3 days and gradually recovered .

I am 22andSexy ie 82 joke Best Wishes

Izzle profile image
Izzle in reply tokellie111

Oooh you lucky lady, sexy and only 1 AF. Just one piece of advice, if they've put you on a blood thinner make sure you take it EVERY DAY. I consider that stroke prevention measure is number one.

PS: I was sexy at 22 as well. Now chocolate has taken over, but not all the time. Have a cuddle from me.

nymima01 profile image
nymima01 in reply todave1950

My mother has afib and she went in for a hysterectomy when she was 84 yrs old. After the surgery, she went into such afib (not sure what to call it), that they had to paddle her 6x in order to get her heart in sync again. Right after that they put a pacemaker in her too. She refuses to have any more surgeries where she would need general anesthesia. Her pace maker is to keep her heart from slowing down. So I can see why the anesthesiologist would be concerned. They probably wouldn't need to do any more surgeries now anyway as she is 91 yrs old now. And she's had afib for more than 25 yrs!

Izzle profile image
Izzle in reply tonymima01

Thanks for your reply. I can imagine your mothers stress with all that medical intervention. Seriously stressful stuff, the wrong sort of adrenaline rush so no wonder she went into AF.

If she's had AF for 25 years she's looking after things very well and hopefully a few more years to come. Keep up the good AF management.

Izzle profile image
Izzle in reply todave1950

Thanks for your response. I was on sotalol for a few years as being the 'best' regime for my AF but they had to slowly increase the dosage as it became less effective until I approached the maximum. They converted me onto Betaloc (beta-blocker). I think they both have the same objective which is to knock the tops off the AF pulse get maintain a reasonably stable pulse when in sinus rhythm. It's all in the balance of those two conditions.

Regarding the aura migraines I think there's a connection with AF but I suspect it's chicken and egg situation, ie which one creates the other problem. My migraines are very minor and gone within 20-30 mins.

Izzle profile image
Izzle in reply toFinvola

Yes, we have a lot in common. Didn't like your comment regarding chocolate and red meat needs to be lean, but I think you're basically right. I'm not keen on chicken with all the 'preventative' medication they use.

What is SVT?

Finvola profile image
Finvola in reply toIzzle

SVT is supra ventricular tachycardia - a general term for rapid heartbeat originating in the upper chambers. It is usually used to describe a regular, rapid heartbeat but strictly speaking, AF is also an SVT.

I know what you mean about chocolate - grrrrr. I eat 4 squares of 85% cocoa dark chocolate each day. It's high in magnesium and doesn't seem to cause me any problems.

Izzle profile image
Izzle in reply toFinvola

Don't the mysterious THEY reckon eating chocolate (especially the really dark stuff) has health benefits similar to the odd glass of red wine. All I know is choc comes from a bean so should be considered as one of your five a day veggies.

I thought SVT could be akin to CVT auto transmission in your Japanese car. Only joking.

Rellim296 profile image
Rellim296

Hello Izzle,

You'll find a wealth of opinion here about triggers, diet, supplements and lifestyle.

I'm wondering whose opinion it is that you are not serious enough for an ablation. Yours? Your family? Your GP? Your cardiologist? Have you seen an EP (electrophysiologist)? Have you drifted along over the years being not bad enough for any treatment?

I'm not trying to hasten you in the ablation direction but just wondering why it seems to be ruled out.

I have an episode every couple of weeks. It lasts a few hours and doesn't impede me much. I don't get any of the nasty side effects, not even migraine aura or reduced BP and I consider myself very lucky indeed. But I have been offered an ablation. I have not accepted, partly because I feel I am good enough as I am. I'm much better than so many others and far better off than I was a few years ago. Another ablation would be the fourth and I feel I've had my share. I'm quite sure my family would not be in favour.

But where are we going, you and I? The AF rumbles on and does our hearts no favours. You don't mention how old you are or what medication you take. My EP has suggested I take daily antiarrhythmic medication and I'm resisting that too as I've worn that T shirt and am glad to be rid of it.

dave1950 profile image
dave1950 in reply toRellim296

Mine sounds like Izzles and my EP has said that the risk of ablation outweigh the benefits as my lifestyle is not that affected. You are stuck with the increased stroke risk even if you have an ablation so it is not worth it for me, at least now. Plus every different EP I have seen (and I attend a regular clinic every few months) have said that AF does not increase the risk of a cardiac arrest or alter my life expectancy other than the stroke risk. It's all statistics of course but you have to go with them. Personally as well, my AF is only about 100 bpm for a short time at the beginning and that is an inaccurate measurement because it is very irregular in small groups of slow, fast and missed beats then it goes to normal irregular before going back to normal after 36 hours.

Dave

Rellim296 profile image
Rellim296 in reply todave1950

I think it's wise (even though I don't) to follow one's EP's advice - and well worth getting an expert's view.

My main concern in letting things drift - apart from the dreaded stroke of course - is enlargement of the left atrium. Life expectancy is something that is not in my equation as I'm old enough to have already far exceeded my wildest hopes. I've gone into all three ablations feeling I'd not feel short changed if it went pear shaped. We all have different perceptions.

Izzle profile image
Izzle in reply todave1950

Another very interesting post. Although my pulse in AF is much higher than yours, I suspect my medical advisers are doing a risk assessment and come down in favour of no ablation at this time. Living a relatively normal life has a lot to be said for it.

Thank you

Izzle profile image
Izzle in reply toRellim296

Thanks for your input rellim. My GP(s) and heart specialist(s) over the years have all steered me away from ablation of any sort. They see I can lead a reasonably normal life where I only write off a day or so every fortnight. Your experience having had 4 ablations is interesting. Were you in full time AF before your first ablation and why 4 times? How did they locate the exact position for the ablation?

Rellim296 profile image
Rellim296 in reply toIzzle

No, I have never had full time AF. I used to get it once in six weeks and it is now between 11 and 20 days between sessions.

My AF sounds very much like yours, except I don't need to write off a day when I have it, unless it's something like a long walk that had been planned. I woke with AF the day I had to see my EP who is 55 miles away. Driving that far in AF takes me out of my comfort zone so I drove 25 miles, parked the car, strolled 20 minutes to the station, took two trains, and then (as I had plenty of time) chose to stroll 2 miles to the hospital instead of taking the bus. My heart was still hammering away when I had a proper ECG (very handy) and saw my EP but I was in sinus rhythm by the time I got back to my car. AF sets off with some vigour but peters out and I find it hard to tell when it finally dies away.

My first ablation was for tachycardia and during it they discovered I had AF. After six cardioversions and not much ablation, I think they gave up and tried me on flecainide which worked well for a couple of years. The AF crept back and I moved to the max dose with little effect.

The second ablation was by laser and a camera and balloon were used. They found that I'm one of the 25% who have three pulmonary veins and the singleton is on the large side which is a disadvantage as the balloon may not have expanded it fully. It was major progress though and I was able to give up all the flecainide after a few months - but still got AF now and then.

During the third they made a 3D computer model of my heart and hoped to have tidied up but not so. All three ablations have been relatively short in duration.

Ablation number four hasn't happened. My EP has suggested it and also daily flecainide but was persuaded to let me stay as I am, taking only medication for blood pressure control plus anticoagulation. I'm very happy because I have moved forwards such a long way from where I was a while ago.

Sorry to have given you almost my life story!

Izzle profile image
Izzle in reply toRellim296

I've found your experience very enlightening. Thank you.

I've had about 200 AF's in 21 years. No ablations. Early on I used to go to A&E where they tried drugs but finished up with cardioversion. No probs there.

Because the AF effects only my BP and have no other symptoms (pains or sweats etc) and I always self revert to NSR, so I no longer go to hospital. It's then a question of to how I manage my AF for a speedy recovery with as little heart damage as possible. I've found for me that trying to carry on a normal life roughly doubles the recovery time, ie twice the exposure to stroke risk. Instead I rest up for a few hours (4-12) and let my pulse settle to about 100-140, then I can do 'light duties'. When my pulse drops consistently below 100 I can then get a little more vigorous (eg short walk, shower etc) and my ticker will suddenly clicks back into NSR. Typically it takes about 24 hours.

My heart specialist tells me there's been little change in my heart condition in the last 10 years except the slight enlargement of left atrium has reduced to be classed as 'normal'. So taking things easy seems to suit my AF in terms of recovery time and heart damage.

It's also worth a mention that I have pulsitile tinnitus, so hear my pulse all the time. It's not very nice really (pulsating hiss like a squeezed hosepipe) but it has one bonus that I immediately know when I'm going into AF (it screams at me, but not too loud) and when I revert to NSR it pulsates again. Isn't the body funny sometimes.

Cheers

Rellim296 profile image
Rellim296 in reply toIzzle

Thank you - that's interesting too. I have recently been cutting back on activities when in AF. I don't usually check blood pressure.

Good that you know the state of the left atrium and indeed even better to know it's back to normal. I have no idea as it's at least a couple of years since I last had an echocardiogram.

I can occasionally hear my pulse, usually late in the evening, and can see a pulse sometimes too. And occasionally I see a bit of air tingle very low down in my line of sight but none of these are associated with AF.

Yes, we can be very odd!

Clarrie profile image
Clarrie

I have only had AF for two years but get attacks every 2-3 weeks. Sometimes not too bad and can carry on but others just rest. have to Are you on any medication? I take 80mg of Sotalol twice daily and can take an extra tablet when I get an attack. Also on 5mg Apixaban twice daily.

Izzle profile image
Izzle in reply toClarrie

Thanks for your input Clarrie. I've had so many AF's (over 150 in the last 7 years) and my medical advisers see the consistency in the ways I manage each event. Initially they said go to hospital but now they say providing my symptoms don't change I'm OK to carry on life as I like. Because I've never blacked out I have their permission to drive or take overseas flights while in AF.

I take a beta-blocker. I've stopped taking a small extra dose when in AF as it can lower my pulse too much when I return to sinus rhythm.

I take warfarin for blood thinning/stroke prevention and my INR is very consistent not having to change dosage for quite a few years. Keeping a steady diet (particularly potassium intake - that doesn't mean no or low potassium) is the key.

So my medication regime is relatively simple. Its a balance between keeping things going properly when in AF or in sinus rhythm. My meds do not seem to prevent AF starting.

Clarrie profile image
Clarrie in reply toIzzle

Thanks for your reply Izzle. Like you my meds do not prevent the AF and when I take an extra dose my pulse drops into low 40s before I return to NSR and I feel like I am going to pass out but don't. I never drive when I am having an attack.

I have chosen to continue on meds rather than have an ablation at the moment. Just worried about the effect it is having on my heart but am seeing cardiologist in a couple of weeks so will discuss with him.

Izzle profile image
Izzle in reply toClarrie

Did you read my comments today that I left for rellim. I mentioned how I try to manage my AF episodes. You may get something out of it.

Pulse in the 40's can't be very nice. Light headed no doubt. Do you do anything to help you revert to NSR?

I've noticed a couple of different things but nothing consistently works. My pulse needs to get down usually into the 80's and then there's a chance of a trigger working.....an activity like a gentle walk, showering and even on one occasion going for a tiddle worked (I watched my pulsemeter drop from in the 90's back to normal in 20 seconds).

djmnet profile image
djmnet

The problem with identifying triggers, I find, is that they are not at all consistent. What I think may trigger my AF on one occasion doesn't trigger it the next time (i.e., spicy food, MSG, alcohol, etc.). I refuse to give up every single thing that I think may have been a trigger on one occasion since it may never happen again. My motto is live your life as you want to live it, and tolerate the occasional AF episode. Mine come every 6 days, almost like clockwork. Cyclical afib with no identifiable trigger? Who knows ...

Izzle profile image
Izzle in reply todjmnet

Another interesting post. Having had AF for 21 yrs and I guess around 200 incidents, I have had many different triggers. My notes for the last 7 yrs show a few common ones so they'll be those I have chosen to prevent. Moderate eating and chewing well I think will help me. My BMI is at the top end of normal and someone has suggested a weight reduction could help. I'm will to give it a try. I'll keep you posted.

dave1950 profile image
dave1950 in reply todjmnet

Same here. Gradually finding more people with similar frequency and type to mine. Still not quite sure why some people who say they don't get them very often and they don't affect their lifestyle are having ablations which often don't seem to work anyway. Are they in the U.S. My EP's don't seem that interested in that for me.

Rellim296 profile image
Rellim296 in reply todave1950

I manage quite well in AF but ablation has, I believe, prevented my AF getting any worse or becoming permanent and I imagine that, whilst not free of AF, I'm far better off now than I would have been had the ablation route not been offered to me. I was downing large quantities of medication (flecainide) and now I don't need to take it. I'm in the UK.

Izzle profile image
Izzle in reply toRellim296

Yes, if you were taking lots of meds for your AF I can understand your decision to have the ablation once it was offered. Presumably your AF's were more severe than mine.

Did you just need one ablation and which procedure did they use? How did they locate the exact area to 'hit' with the ablation?

Rellim296 profile image
Rellim296 in reply toIzzle

I don't know how they determine where to hit, but they can certainly induce AF and I was told they did so twice for me at the end of my last ablation (see above) and were pleased that it quickly stopped spontaneously both times.

Izzle profile image
Izzle in reply toRellim296

That's really interesting Rellim. Must give you some confidence about their work.

Thanks for answering my question.

Rellim296 profile image
Rellim296 in reply toIzzle

There are several videos of ablation on You Tube and elsewhere. It's really interesting (and does inspire confidence) when you get there and can see all the screens but I remember nothing at all - I gently surfaced each time and it was long since over.

EngMac profile image
EngMac

The right chiropractor can probably help with the headaches. You need to find one who is trained to do this. Many chiropractors have additional specialist training. In Canada, they are not allowed to advertise that they have.

Izzle profile image
Izzle in reply toEngMac

That's an interesting thought although I shall hold off on your suggestion as my aura migraines are not severe and last just a short time. I don't even take an aspirin. But there appears to be a connection to AF although I don't think they know that link yet.

Izzle profile image
Izzle

Hello again, it's Izzle and thank you so much for all the replies to my introductory post. I never expected such a response and from it have realised that I'm an average AF patient.

I've been asked to share a little more of my history. I'm a 73 yo male, living in New Zealand and had paroxysmal AF for 21 years. Back then it occurred every couple of years but now every couple of weeks with resting pulse 140-170 and BP something like 105/68. Over the years I've found my quickest route to sinus rhythm is to rest until pulse subsides to 100-140 (4-12 hours) then light duties until recovered (about 30 hours total).

My left atrium was slightly enlarged when I first visited my specialist but with care has reduced in size and now classed as normal. On a recent routine visit she gave me a '10 year MOT' .

Thanks for the discussion about triggers. I have the usual array of repetitive and non-repetitive triggers as so many other have. I take brief notes on every AF incident and over half relate to eating and bending. Someone used said they had a dysfunctional vagal nerve, I think I have the same. The advice of improving eating habits is well noted, ie eat smaller meals and chew them well. I'll let you know how it goes.

I also have triggers for returning to sinus rhythm. The 'magic sandwich', showering, light exercise, even going for a tiddle.

As for diet, I've been more consistent with a 2361 regime, 2 fruit 3 veg 6 carbs and 1 (150g) protein. 'er in doors' wants to lose weight and we'll change that to 2342 (200g protein). I also avoid stimulants where reasonable, alcohol, caffeine and reduced sugar but still have 4 squares of dark choc daily.

People ask why I'm not up for an ablation. My GP(s) and heart specialist(s) (they've changed over the years) all tell me the same story which is that the occurrences will increase until one day I'll stay in AF and then an ablation is the right remedy. I've read so many accounts where repeat ablations have been necessary and I suspect it's because the surgeon can't quite determine the exact location unless the patient is actually in AF at the time. Am I correct in that thinking?

Exercise: I manage my own garden including the lawns. I like cycling but don't do enough and recently converted to bike to electric so I can get home if I have an AF (which has happened twice). I have recently taken up yoga but not learned much about meditation yet, but 'brain-gym' breathing is showing an improvement but too early to confirm this. I guess I'm average fitness for my age.

I could go on but probably that's enough to be going on with. I haven't touched on medication yet.

9 days since my last AF and feeling good.

Thanks one again for your input.

dave1950 profile image
dave1950

I think Izzle you have just answered my question about ablations. I'm 67 and only known I've had the for 18 months but I suspect it's much longer because i was never pre-possessed about my pulse before ! Did a lot of sport for a long time and i have read AF is quite common in formerly very fit people. oh the irony!

Dave

Izzle profile image
Izzle in reply todave1950

Glad to have helguess.ped, Dave.

My first AF happened when I a passenger in a 'minor car accident' (cracked ribs and whiplash) but I think I had a predisposition to it having had a stressful life.....years of excess adrenaline I guess.

Lofty77 profile image
Lofty77

The only Hi izzle what is your heart rate when you get these AF episodes.?

Izzle profile image
Izzle

Measuring ones pulse is a science in itself particularly with a fast erratic pulse.

My heart specialist advised me to exercise to 70% of my age related maximum which for me aged 73 is 102 bpm. To measure this I purchased a not too expensive watch and chest strap (with electrodes) which has been my mainstay for many years now. Not instrument quality or anything like that but it does give a reasonable assessment. I have at times of going into AF used it to see what's happening and an erratic 150 bpm is common for me although I have seen much higher. It settles back into the 100-140 region, then a third stage below 100 typically over a 1 to 2 day period.

I was recently out on my electric bike, had ridden just 3 miles when I saw my pulsemeter shoot up from 98 (I was still warming up) to 152. So I immediately stopped and sure enough I was in AF with a standing pulse of 145. Last year I'd converted my bike to electric for exactly this situation, ie I needed to get home. I thought I'd ride at a limp pace of 125-135 bpm and controlled my speed and electrical power assistance accordingly. Got home safely without any side effects.

On a previous occasion when playing golf I went into AF. I went to the small ED at my local doctors and they confirmed my condition. On their electronic instruments my pulse at rest was 135-ish but I had my pulsemeter on and it read 145. I discussed this with the Dr and decided each unit had a different algorithm in the computer chip. I also know you'll get a lower reading with instruments using light to measure pulse.

On yet another occasion I was in AF but needed to play the final round of a bridge competition which we were leading. Rather than let down my partner I played, but with my pulsemeter on. The so-and-so put me into a big slam which got the adrenaline flowing all right, pulse went up to 217. We won the championship but I gave up serious bridge, too much excitement.

I've also found out that some of the electronic sensor equipment can be subject to interference from computers, cellphone and even your car. Nothings perfect is it.

I hope that answers your question Loffy.

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