Hi,
I have had AF only once in a year and seem to be managing well now I have cut back on alcohol. Any one else on this site have AF very rarely. I would be interested to know your thoughts on how you are managing the condition and if you feel it's gone away completely or worry that it might come back!
I have PAF and last year I was having very frequent episodes but my last episode was back in March. I am very hopeful that future episodes will become a rare event or even stop completely. If they don't then I will keep an open mind about exploring an ablation before I get much older (I am 64yrs old).
My approach to managing my condition has been to lose over two stone in weight, give up all alcohol, eat a lot more fruit and take a magnesium supplement. More difficult was learning to relax and reduce stress and tension but I am succeeding better than I expected (worrying about things achieves nothing).
I am taking flecainide and bisoprolol and have a relatively low pulse rate but have no other obvious symptons. If I manage to go over a year without an episode, my plan is to talk to the cardiologist about a reduction in dosage or stopping one or both drugs.
Hope this helps. Do you have a plan?
At 54 I have to have hope and try anything and everything. I was taking Flecanaide and Sotalol low dose as Bisoprolol didn't suit me but my cardiologist stopped the Flecanaide and at the same time I started remag magnesium supplement. Apart from a few ectopics, since 19th August my heart rate and rhythm have been very settled. I don't drink a lot of alcohol, I eat lots and lots of fruit and vegetables and fish, and I do yoga. I have an Alivecor which I rely on but my cardiologist gets really annoyed with me for using it and refuses to acknowledge anything to do with it, which is really frustrating. Has anybody else experienced this? Good luck, let's hope lifestyle and magnesium can stabilise us from this awful, unnerving condition.
Pauline
Hi my position mirrors yours pretty exactly. I had very frequent AF episodes almost daily. I decided to take control of what I consider to be trigger points I.e. weight, alcohol and stress. I have lost 2 stone up to now, stopped drinking (never was a big drinker ) and most importantly learned to stop worrying about things I can't change. I still have eptopic beats but I have them most of my life. I take 1.25 beater blocker. There is certainly a ground swell of opinion that perhaps starting to manage trigger points may be better than to simply drug treat the symptoms of AF. I have now been AF free for six months.
Agree, we have similar circumstances.
Thankfully I have had only one known and proven PAF episode.
To my knowledge, the last time I had AF was that one nasty event in June 2012.
I have an Alivecor as you know, so I'm aware of what's going on and I get single ectopics or two, sometimes three PACs together, just a handful, 2-5 of times a day at the moment.
I'm on no drugs at all bar Pip flecainide but yet to take one.
I do have a long history of 'palpitations' and plenty of fruitless investigations into them, even being prescribed Bisoprolol as a pip in 2006. I only ever took 2 or 3 and my cardiologist at the time took me off them as they made me sluggish and gave me nightmares.
Like you I have limited my drinking now, to one smallish glass of wine only and that's probably twice, occasionally three times a week.
The other change I made is to take supplements, including a hefty dose of magnesium which I'm sure helps me.
My resting heart rate is in the 50's these days even though I know for sure it was ~ 72 ten or twelve years ago. I do think the low resting rate is a contributing factor.
I put my PAF in 2012 down to dehydration and then the subsequent icy drink which aggravated my vagus nerve. I make sure I'm constantly hydrated now.
I don't feel the AF has gone away but rather it is biding it's time : (
Pat
Are you anti coagulated falling to pieces?
I had a 12hour AF attack in 2010 which reverted to NSR on it's own. Then I had a 4hour attack in Feb 2015 which reverted with IV Flecainide. No AF before or after these solitary 2 attacks.
I take 1.25 bisoprolol on alternate days! I find that dose just enough to keep my blood pressure normal without giving me side effects. I have some PIP Flecainide but have never used it. I am not anti coagulated.
I Enjoy a drink and have some wine most days. Exercise by walking for half an hour everyday.
I'm always careful never to eat too much food in one sitting as I feel that both my attacks were vagal.
Lucy
No, I'm not on anticoagulants Lucy . My EP says I don't need them. I'm almost 56 and all other tests on my heart have been fine.
Btw my 2012 episode was 90 minutes long.
Pat
Hi Fallingtopieces, we have similar pulse history. Any views on Taurine? I have always had lowish BP and a 'lazy/slippery' pulse and in the past more taurine has been suggested albeit by a reputable (I think?!) supplement company.
I already take Taurine in my Mg compound daily but thinking of buying it on its own if only to have to hand as one way of stopping an episode should it occur - haven't had one for 18 months now.
I already take it as a supplement on its own. When I first began researching this 3 years ago, I read an awful lot on the US based Afibbers site and followed much of the advice on supplements there. In case you're wondering, I never follow anything blindly. I'm not only an over thinker, I'm also an over researcher now!
Interestingly, I haven't read anything about taking taurine, effectively, as a PIP?
However, I do keep magnesium powder in for emergencies. I once dissolved some in warm water(at 3am) and by drinking it quickly I'm convinced it stopped a short spell of trigeminy in its tracks.
Pat
Thank you, can I ask how much taurine you take daily and which manufacturer? I currently take 750mg per day, which comes in my Mg compound, which is marketed as Nutri Ultra Muscleze.
In taking one capsule of 1000mg and the brand is 'Now' (USA).
The dosage on the bottle suggests 1 or 2 per day.
Pat
Thanks Pat, that's very helpful.
Hi - I have had PAF for at least 8-9 years. The episodes are few and far between, although saying that one never knows when it will happen. I had a 2 lead pacemaker inserted early August for Brady and tachycardia. Since then I have had 1 episode that lasted 12 hours. I am taking Apixaban x 2 daily and 2.5 mg Bisoprolol. I do worry about future PAF episodes and I'm sure I am not the only one who thinks this. But.. you have to carry on life normally as possible. I do try to keep calm on a daily basis, but the thought of a PAF episode is always in the background of the mind. I do not drink alcohol, purely because I don't like the taste, so cutting back does not apply to me. Good luck and I hope this helps.
Carol
I think we all start this journey with episodes spaced well apart chronologically - my first two were just over a year apart - but sadly that doesn't last for the huge majority of us. It is highly likely that they will become more frequent and of longer duration and lead eventually - can take many years - to a state of permanent AF. You will hear of people, like 'fallingtopieces' above who has only had one episode in over three years. From my understanding of this condition such a case is very rare indeed and leads one to wonder if it wasn't a misdiagnosis in the first place.
I accepted the condition for nearly five years, taking the drugs and hoping for the best. Five wasted years which brought me very close to persistent AF. I'm now post ablation, AF free and getting on with my life. Don't wait as long as I did....
Definitely not misdiagnosed PAF. Fortunately I had/still have, several long recordings which were printed off for me by the attending paramedic.
Pat
These references to vagal nerve - I am aware of it but can you enlighten me about it further - the connection/ impact etc please
I get an attack about once every six months, lasts about one and a half hours, at around 6 am. Have had cardiac monitoring, but nothing much happens when the attack is over, maybe a few ectopics now and again. Think alcohol could be a trigger, but wondered about music with a loud heavy base beat. I take amlodipine for hypertension, have thought about magnesium. Also potassium as mine was a bit low after one attack.
I had nine AF episodes in March 2014 (plus a history going back to 2008) before going onto 100mg Flecainide x2 per day plus Mg (a compound which includes Taurine, potassium & other key heart stuff), Coq10 and a lot of lifestyle changes. No episodes now for 18 months, apart from one 45 min one due to ignoring a known trigger. I was offered an ablation back in 2014 but opted to postpone it.
No anticoag as 62 and cardiologist said I don't need it. I do use quite a bit of best quality organic olive oil on food and a daily Krill oil supplement, avoid dehydration, drink filtered water and walk 1 mile x2 per day plus other exercise.
Current issues I am wrestling with are: should I increase Taurine as my pulse is in the 50's and I suspect drops lower when asleep allowing AF a chance to start. How to reduce the sensitivity of the Vagus nerve, which is linked to replacing worries with an increasing focus on the many positives instead. A big help is developing new interests and not looking back or doing old pre-AF stuff.
I think the priorities are to stabilise your condition with the help of drugs, buying time to introduce not just one but many lifestyle changes/supplements and then allow quite some time to let the new regime do its stuff before slowly reducing the drugs.
At an AF day in Birmingham a couple of years ago one of the speakers (albeit much younger than me) told me best to stay on the Flecainide for 2 years before trying a reduction which he had successfully done.
Sorry a longer reply than intended I hope you can pick something useful out of it.
"No anticoag as 62 and cardiologist said I don't need it. I do use quite a bit of best quality organic olive oil on food"
Strokes don't happen to folk aged 62.......? or do you believe best quality olive oil acts as an anti-coagulant?
My CHADS score is 0. No anticoags pushes me on to keep active and yes I think the right oil helps just as i think sugar works in the opposite way making the blood sticky, so am on a very reduced sugar intake.
The bottom line is we will never know which route is best as we can't run two options at the same time to see the consequences and we are all different.
Individually we may not be able to compare life options but collectively we certainly can. Many more Affibers without anti-coagulation suffer TIAs/strokes than do those who are protected. And while there may well be a difference in propensity to stroke between a 20 year old and a 60 year old, it's entirely inconsequential when comparing a 62 year old to someone of 65 (when the CHADS score changes!). The reality is that one doesn't suddenly become vulnerable as the sixty-fifth candle lights up the birthday cake.....
I take apixaban. It certainly doesn't hold me back; I'm very active. In fact it has no effect on my routine at all though I concede you couldn't necessarily say that about warfarin.
I'm sure the finest virgin olive oil has a lot going for it and there is much evidence to suggest it contributes to a healthy diet and lifestyle. But stroke prevention? I doubt it's qualities are that specific.
It's your decision of course - I just wanted to illuminate the other side of the argument.
I forgot to mention I cross my fingers as well!
No seriously Robert, thank you for the reminder. I am not complacent, have taken Rivaroxaban in the past, will no doubt take it again when I reach 65 and by then they should have a reversal agent on the market.....that is if I haven't beaten AF into a corner by then. You can tell I suffer from over optimism.
Nothing wrong with being optimistic. I guess from your moniker that an 'apple a day' is on the menu too....?
Strokes do happen at 62 and a lot younger!!! Know of one who had one at 48 or 49 and another just up the road who was just in early 50s when it struck. Both permanently disabled.
I also knew someone who had was very active, had stroke in 60s and then was permanently disabled from neck down, couldn't speak and had to live like that for about 15 years. It was hell for him as his brain and hearing were 100%.
Hi Kbuck. I am 42. A few years ago I started to get rare episodes of palpitations but despite several ECGs nothing was picked up. I carried on life as normal. This year things have got worse and I have been diagnosed with PAF. I have recently started taking flecainide. I believe that for me both alcohol and exercise are triggers, although seemingly not all the time which makes this condition quite baffling. Good luck!
Hi,
How do you manage your alcohol? Intake? I have found that sticking to beer only and only having a max of 3 pints seems to be ok - only Once or twice a week. Think beer helps with hydration?
Exercise OK for me - seems to help.
Hi. I drink lager only (Fosters tops) in fact - more like shandies. I enjoy them on a Friday night at home with the family after a hard week at work. Gone are my Stella Artois days! But that's a different story. There is no doubt that they aggravate my condition. I know I should really stop drinking completely. However I feel that I have to have some vice in life. In short I really bloody enjoy them. I agree it's about being sensible and it is hard to know where that line is. For me two nights running of alcohol is a definite no no. An almost guaranteed trigger. I seem to be able to get away with one night a week (most of the time) so long as I don't go too mad! Maybe that will change in the future. Who knows but for now...
My first episode of AF was in 2001, brought on by a virus affecting my heart I think. Then I had a 'run' of AF in 2006 when I was prescribed Propafenone. I had AF after an operation in 2010, then I had another 'run' early last year culminating in a spell in hospital with AF and tachycardia and Diltiazem was added. Since then I have had two or three episodes. I am booked for an ablation for AF and Flutter because the meds were slowing my heart too much and it was pausing for over 3 secs. Since then of course I have been fine, wouldn't you know it! However I am going ahead because I am sure it will progress.
Hi there. I am 67 and was diagnosed with PAF July 2014. Since April of that year, touch wood I have only had the odd `flutter` and full feeling in my chest. I am taking the usual meds re high blood pressure with warfarin and bisoprolol. Since my diagnosis I have ceased to drink alcohol, exercise most days and watch what I eat. All sounds dreadfully boring but if that`s what it takes ..... so be it!! I`m sure we`re all different but it sounds like you`ve found your balance, so fingers crossed for both of us. I always think that every day without an episode is a bonus but know that as I get older things might change. Make the most of every day - I try to - we`re all very fortunate that modern medicine is made readily available - good luck!
I am 52 ( just) was first diagnosed in 2012 and have had only one episode since earlier this year. I have a job that takes me all over the world and I am doing a masters degree on line
What works for me is exercise ( I am in the gym 3-4 times per week). Everything in moderation for food and alcohol and relaxation. I do a bit of Yoga as well
Paf
PAF no anticoagulant!
PAF FLECAINIDE AND SHAKING
PAF link to Vitamin B12
