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AFib Free

Musetta profile image
44 Replies

Hi everyone,

In 2012 when diagnosed (in my sixties) with AFib I had numerous Afib episodes that year and the ensuing two years - three requiring hospitilisation. The episodes varied in duration from 10 hours to several minutes. However, today (15.52015) I'm celebrating a year Afib free. I hope it never raises it's ugly head again! Has anyone else experienced this length of time Afib free? I'm on Apixaban 5mg bd and Diltiazem 240mg once daily.

Cheers and well being to all.

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Musetta profile image
Musetta
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44 Replies
RobertELee profile image
RobertELee

Unusual I would have thought. Do you put it down to anything in particular?

Musetta profile image
Musetta in reply toRobertELee

Hi RobertELee,

None that I can think of - but having read all the replies - another AF episode could be just around the corner! I live in hope...

Cheers,

Musetta

jan-ran profile image
jan-ran

Yes musetta. I was diagnosed in 1996, given atenolol and the problem went away- for several years. I believed that was the end of it. Sadly it wasn't. It gradually crept back ( I had stopped the atenolol altogether) and when I went back to my gp - a different one - I was refused atenolol. Too old fashioned I think, there were so many new and better drugs now. None of them worked, it took years to discover that bisoprolol was the best suited to me. Then flecainide was added. Together, they keep a lid on my af. I get it 3 to 4 times a month, but only mildly and at the moment an episode lasts a couple of hours rather than 6-8 hours. Earlier this year I had a couple of months of no af and tried not to raise my hopes. But I was disappointed when it returned in April. This is how it goes apparently. I hesitated to cast a shadow over your obvious joy, but you asked, so I'm just sharing my experience. I truly hope your good health lasts for ever. Be well, JanR.

Thomps95 profile image
Thomps95

It's very unfortunate that for many people, the AFib can't be easily controlled. However, I do think a lot of people can experience long periods without any episode, especially with treatment. My neighbour has been on the same rhythm + rate control tablets for 12 years without an episode. I started taking a low dose of flecenaide 18 months ago and haven't had an episode since; a lot of people who have had ablation have gone many years without an episode. It may depend on the number of factors that gave rise to A Fib in the first place.

jossikins profile image
jossikins

Yes, with my first cardioversion, when I was in my late 60s, I was AF free for more than a year. Then, I hesitate to tell you bu,t I suddenly went into AF again. 3 more cardioversions later, I was offered a fifth, with a change to Amnioderone (to which I had once before shown an unpleasant reaction), and I said "no, thank you". That was last year. The only other option was to have a pacemaker fitted followed by an AV ablation. I had this done and, since last October, whatever might be going on inside my body, I am totally unaware of it. I now take no drugs, only Warfarin, which I self-monitor so I don't even have to suffer the regular long waits at the hospital clinic to get my INR checked. I manage to keep it fairly steady at around 2.5 and can adjust my own medication if it takes one of those infrequent but inexplicable jumps either forward or backward. It is now approaching the end of a summer in which, with my energy level lifted to new heights, I have been cycling every day and swimming whenever the weather allows. As I am lucky enough to have a house in the Auvergne region of France, the good weather days far outnumber the bad. When I get back to the UK in early September, I will have my pm checked again and have no reason other than to look forward to a problem free winter and have planned various projects accordingly. So, I guess my advice would be, live for the moment and don't worry about what MIGHT happen, just appreciate the fact that, right now, it is NOT happening.

I am sure that a fair proportion of us worry about the symptoms of AF which just increases and'or prolongs those symptoms - which makes us worry more and so it becomes a self-perpetuating cycle. When the symptoms are not evident (even if they may be merely hidden, as with the pm) the worry is removed and so, thus, is the overall quality of life.

Just as an aside, I have increased my daily intake of magnesium which has been shown to help regulate the heart rhythm. There has also been an extensive study undertaken that suggests that those who take a higher dose of magnesium are less likely to suffer a heart attack than those who take a smaller dose. Read into that what you will, I take a magnesium supplement now.

Continued good luck.

Jos.

lankylass profile image
lankylass in reply tojossikins

Hi Jossikins, Just seen your post, would be interested in why you were given a pacemaker, I have to hurry to write this as my friend will be calling round to go to the pub, it's Friday night after all!! My cardiologist has said that pacemakers are used when the heart rate is slow, is that your case? Whoops, have to go now, will try to write again. Cheers,

jossikins profile image
jossikins in reply tolankylass

Hi, lankylass,

Pacemakers are normally used when the heart is slow but they can also be used in other circumstances. When I wore a heart monitor once for a week, more than a year ago, it registered my heart rate at 45 on one occasion only, during the night. Apart from that once my problem was too FAST a heart rate as well as AF and ectopic heart beats. My pacemaker will not let my heart rate drop below 60 bpm but it will also recognise my body's energy needs up to 155 bpm which allows me to exercise at a fairly demanding level without the constant worry of exacerbating the AF and/or developing tachycardia, which used to be the case. I also no longer have the fatigue that came with a heart that doesn't meet the oxygen needs of the body it is serving. If I understand it correctly, the AF is still there but only in the upper chamber of the heart. I don't feel it. The AV ablation I had last October severed the connection between the upper and lower chambers and keeps the faulty messages from passing through to the lower chamber. So, the pacemaker does the job instead and I am now completely dependent upon it. I certainly have no complaints and am more on the go than many people younger than myself. I also, incidentally, still drink in moderation. I hope you had a good night at the pub!!

Cheers!

Jos.

lankylass profile image
lankylass in reply tojossikins

Thanks Joss, That's interesting, the arrhythmia nurse said a similar thing about the AF still being there but the operation 'separated' the 'rogue' nodes and therefore the heart operated as normal. I am looking into ablation now as I am having my second CV this Thursday but already the nurse said I would go back into AF at some point as only lasted 7 months on my first CV, so ablation seems the way forward. Good luck. LL.

jossikins profile image
jossikins in reply tolankylass

Good luck to you, too. It just seems to me that, as most ablations seem to be repeated over and over again, it would save a lot of time and money and inconvenience and even distress on either side if one were able to opt for an AV node ablation and a pacemaker much sooner. However, maybe age has a lot to do with it..................

Let me know how it goes.

Jos.

lankylass profile image
lankylass in reply tojossikins

Thanks Joss, Will do.

Therealsue profile image
Therealsue

I managed a spell of 3 months before it reared it's ugly head again!

7940 profile image
7940

One magnesium tablet won't do much. We are suppose to multiply our weight by 5 and that will give you the amount of magnesium you need to take daily. I got this information from Morley Robbins a magnesium authority. He hosts a magnesium group on Facebook. Magnesium saved me from having a heart attack.

in reply to7940

I have to take a ton of magnesium? There isn't enough in the world... :D

RobertELee profile image
RobertELee in reply to7940

Methinks you have the formula wrong. Body weight X 5!!!!

7940 profile image
7940 in reply toRobertELee

The formula is right. Mine works out to 750 mg per day so I look at how many mg are in each serving , let's say it's 100 mg per tablet then I would take 7 mag tablets per day. I like mag malate for daytime use it gives me energy. I like chelated mag glycine at bedtime.

RobertELee profile image
RobertELee in reply to7940

So 750mg is five times your body weight????????

Take care going out when it's windy!

Harrycat profile image
Harrycat in reply toRobertELee

I tried Magnesium , but it gave me terrible diorhea, is there any other way of taking this?

in reply to7940

??

jossikins profile image
jossikins in reply to7940

That's interesting! I read, on this forum, fairly recently, the gist of an article by a Canadian researcher who said that the incidence of heart attacks in those who had MORE magnesium was significantly lower than in those who had LESS - and this was done over a 26 year study period. I have now increased my magnesium intake to approximately 1000 mgs. per day. One litre of sparkling mineral water with natural magnesium (160 mgs), one effervescent tablet (300 mg) one magnesium tablet (300 mg) and osteocare which contains another 350 mgs. per daily dose of two tablets. I cannot tell you what it is or isn't doing for my heart rhythm since I am pacemaker dependent which hides any AF that is present, but I can tell you that I have never been so REGULAR!! It has totally cured my IBS and my digestive system is running on all good cylinders. I was taking 2 omeprazole a day (for symptoms of gastric reflux). I have not had even one since soon after startin on this magnesium regime at the end of June! Read into that what you will. I have not felt so well in years!

Harrycat profile image
Harrycat in reply to7940

What is the best dose of Magnesium, I have tried quite large tablets, and it upset my stomach, is there another one with less sideeffects I seem to think there is a spray, is that right?

BobD profile image
BobDVolunteer

Seven years post ablation for me but you are doing well if only drug controlled. Has this been proved with a monitor?

Vony profile image
Vony in reply toBobD

I would not fret about whether or not it has been proved with a monitor..being asymptomatic and feeling good is the main thing:)) and before you say it...she is anticoagulated lol.. and I'm sure this lady and her physicians are on top of monitoring her!

Musetta profile image
Musetta in reply toBobD

Hi BobD,

Yes both by ECG, Holter monitor and constant pulse checks and generally feeling well. In the past AF episodes have left me feeling washed out and slightly off kilter - this last for about a day.

Cheers,

Musetta

I went two years between my first attack and my second... They've been about every six months since then, for between five and 11 hours. Everyone's different! I always get all happy and think it's gone away and then it rears its ugly head again....

Lis

Spiritji profile image
Spiritji

Well according to my records I have permanent Afib which i find quite humorous as there is nothing permanent in this world apparently except my Afib. My cardiologist was sort of beside himself as i would not take drugs. I now take Diltiazem 120 once a day and Pradaxa. I am wondering if the gentleman who started this thread is doing well from the Diltiazem. My halter monitor test showed that the afib was under control and I am able to swim 50 laps so doing ok. I did have a very rough time in the spring, lost my energy, and never knew what it was but it could have been I was detoxing off the Digoxin...now just on the two drugs and really I am ok

15 months AF free on Flecainide. I look on the drug as the short term measure to stabilise the condition and buy time.

In my case (Lone PAF), I am pretty convinced lifestyle changes and Magnesium/other supplements are the long term measure but the jury is still out.

Good Luck and put more into each 'good day'!

DavDug profile image
DavDug in reply to

Orchardworker,

I am intrigued? I am an AFer of 7 years. Could you develop your list of lifestyle changes more explicitly?

What have you been up to and what levels of Magnesium and other supplements do you take?

I have just read someone else's blog. They seem to be putting their loss of AF success down to their lifestyle change and loss of weight. How do you compare?

Well done you! I hope your NSR continues.

in reply toDavDug

DavDug

It would be easier to list the Lifestyle changes I haven't acted on. The changes I have made are also not easy to prioritise as any more or less effective than each other. Lastly, I feel very fortunate to have been in a position to make the changes in the first place and to obtain positives out of them.

That said this is what I did.....

Once the heart rate/rhythm rate was under control, I focussed on the brain and the stomach as my AF is I believe triggered by an overactive Vagus Nerve (links the stomach via the heart to the brain and in some way linked to vigorous exercise).

Took up a new hobby at home, joined two new clubs, spent much more time on my smallholding (google 'care farming' for more info on the therapeutic benefits), reduced my self employed business hours by 25%, had no stress areas apart from struggling to get partner support (succeeded after 6 months), previously I was an 'accelerator and brake' person now just in 'third gear' constantly, gave up known triggers running and tennis and do brisk walking (2x1 mile per day), 1 hour any time in the evening for mindfulness, breathing exercise and prayer, avoid heavy meals particularly at night, no coffee (try Orzo Italian Organic Barley Coffee substitute, it's much better than the rest), no alcohol (really miss Guinness), no very cold drinks, no TV thrillers or emotional talk about any subject after 6pm. My diet has become 80% organic from known farms and own grown all prepared from scratch, therefore weight no problem.

I am sure there are other changes ....the good news is the positives do outweigh the regrets.

Supplements: Nutri Ultra Muscleze (Mg +Taurine +others), CoQ10, Krill fish oil and recently Mg Citrate, Probiotics and Vit C. The manufacturers are also important and have been recommended by my Naturopath.

A considerable incentive for all of this was when the medics said I had Lone AF (i.e. no heart defects) and they didn't know what caused it....I realised then that I may be able to reduce the incidence myself.

Good Luck and let us know your plan.

Vony profile image
Vony in reply to

No alcohol...not even a little bit....?! Great advice:)

DavDug profile image
DavDug in reply to

orchardworker

I am grateful to you for setting out your mode of operation. Well thought through and a lot of consideration must have gone into your plan of action. I am still formulating mine. Like you I am self employed and well supported by my good lady.

I have already set out a more relaxed regime and am looking at the use of natural supplements. I also use Coenzyme Q10 and Magnesium taurate and have recently acquire Dr. Carolyn Dean's books (The Magnesium Miracle and AF: Remineralize Your Heart).

I also have the rare Waldenstrom's Macroglobulinaemia a type of Non Hodgkin's Lymphoma and I set out my plan of action for that. These type of complaints come from close contact with Engineering and Agriculture. Perhaps AF is tied up with that too.

The information of the vagus nerve would interest one of the ladies in the small group I belong to which was formed last January near York. We meet monthly. That is also a useful vessel for discussion and certainly led me along the Magnesium route. Having been dealing with this AF since 2008. I am not at all sure that all the drugs (Dabigatran, Nabivolol and Diltiazem) are doing me good. I was recently given Amiodarone which was a real shock to the body. I have also refused Statins in the past after some research. Big Pharma have a lot to answer for.

Thanks again for your help. I shall blog on my progress.

Kind regards.

Tailor profile image
Tailor in reply toDavDug

Davdug

Like you I have AF and WM.

I had an ablation in 2011 and only have an attack if I get stressed. The WM is sleeping and isn't affecting me. I'm on Bisopronal and pill in pocket Fleconide in case of an AF attack. I am also on a statin and Warfarin. Can you please explain what you mean by these complaints come from close contact from engineering and agriculture and what is the lowdown on statins?

I am also self employed, I used to teach the big kids but now I sew and a little gardening at weekends, helping hubby.

Kind regards.

Hi Musetta!

In the past I've been AF free for 4+ years at one point & frequently 1+ years. ( history goes back 22+years )

I am now over 2 years post my 3rd ablation & 4 months post 14th DC cardioversion but remain ever optimistic that, with the help of drug Disopyramide, I will remain ever longer in NSR.

Continue to think positively ... this may be the 'end ' of AF for you!

Best Wishes

Sandra

Finvola profile image
Finvola

I had my first 'funny turns' in 2007 but nothing was caught on ECG's over a period of about 7 months. The episodes stopped for about 3 years, then I had the odd one now and again until the big one which put me in hospital and was diagnosed finally as AF in 2014 - New Year gift. Now on Flecainide and AF free for 1 year.

bridget54 profile image
bridget54

Yes Musetta. On medication Ive sometimes gone a couple years AF free only for it to return with a vengence once the dose of medication Im on no longer controls it.

Sorry to be a kill joy but enjoy the period of AF free time your having.

souljacs4 profile image
souljacs4

There are an estimated one million people with AF in the UK and 3,277people on this site, so there could be many more people who are getting only one episode of AF and a lot more who are getting them few and far between.

Also many people have very well controlled AF, with medication. As far as I know there is not a lot off data on this subject, so you could be one of the lucky ones.

eleanor--1941 profile image
eleanor--1941

Glad you have a years free of AF I have gone fr

eleanor--1941 profile image
eleanor--1941

So pleased you have had a free year from AF.

I have had AF for 16yrs now,I've had one and to years free from it,but sorry to say it always returns.

I think once you have AF you are stuck with it,as it is an electrical fault in the heart,but you do learn to live with it.

Hope you keep well Musetta.

Eleanor.

cat55 profile image
cat55

Hi I was diagnosed on my first experience of A.F. as I thought I was dying and was still in A.F. when I arrived in A and E, this was in 2002, over the years I have been A.F free for a good few years 3-4 at a time but it has always come back and consequently as episodes are so spasmodic always scares me. I do however have periods when I have many ectopic filled days,( ectopics confirmed on monitors). I have monitored when these occur and I now have no doubt that they occur at times when I feel very stressed. I was initially given Sotalol but didn't like what it did to me so i stopped it pretty quickly, now only take Warfarin, last episode that I am aware of was over 2 years ago, I am fully aware it will strike again but I try to sort out my anxieties (had CBT) .and forget about it as much as possible. I read the posts on here and glean valuable information and have received wonderful support and advice when needed. I am grateful for this site and for every day I am A.F free. Long may you stay free of it yourself. Best wishes Kath

Glad to see others benefit from diltiazam, that combined with flecainide has helped me.

Annekw profile image
Annekw

Hi I saw my Cardiologist yesterday, I'm on Amiodarone 100mgs (previously 200mgs for the last three months) Bisopral 1-25mgs Apixaban 2 morning and evening and Bendroflumethiazide daily !

I see him again in October by which time we hope to stop all but the ApixAban and the Bendroflumethiazide,as we think my AF was caused by Septicemia!here's hoping!!!

rosyG profile image
rosyG

I've been AF free for a year and 3 months - since I started to ensure I had potassium rich foods in my diet. I noticed that the 3 times my AF was bad enough to warrant A and E ( and therefore had blood tests done) my potassium was below range. Prior to the diet change my episodes of AF were one to two (max) monthly.

I've also started a magnesium supplement because of the interaction of electrolytes - think this is a good plan. I need to lose some weight- about a stone- easier said than done!

I don't take any meds except Apixaban as my resting pulse is low so took myself off beta blockers which I had found are contraindicated anyway with vagal AF.

I don't expect this will be the end of my AF and think all the sensible things like exercise, losing weight, enough sleep etc are vital to help heart health!!

souljacs4 profile image
souljacs4

Great to hear your AF free. long may it last.

Musetta profile image
Musetta

Thanks to all AFibbers for your replies - it' a strange beast this Afib - it affects so many people in so many different ways.

Cheers and good health,

Musetta

DavDug profile image
DavDug

I have yet to rise to those dizzy Heights. You do not say if you had any other treatment but if you have done it with just the drugs then well done. I do hope it lasts for ever.

Kind regards.

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