Stop being a junky!: A recent poster... - Atrial Fibrillati...

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Stop being a junky!

96 Replies

A recent poster suggested that we should stop cycling....and that stirred things up a bit.

I've recently had my cage rattled by the suggestion that I'm so very lucky with my extremely mild version of AF. That's a bit like insulting a member of my family isn't it? I can do that but don't you try it! As far as I'm concerned my AF is mild because I make it so......and without being a junky.

And so, a bit like that fellow who suggested that we should stop cycling in order to cure AF, I will suggest an even better cure. Stop with the drugs....

Why are you taking them? No really, why are you taking them? Research what they do. Not withstanding that they have been prescribed. Do you really need to be taking a rate control drug? What is your RHR? Check the information leaflet, all of them say that I should not take this drug because my RHR is below the limit...but I still have AF.

Rhythm control? OK, what does arythmia do for you? I have PAF and so I know that I will revert to NSR some time within the next 24 to 36 hrs and I can live with that.

Be honest, do you REALLY need to be taking these drugs or are they just a crutch?

OK.....I'll fetch my coat....

96 Replies
SRMGrandma profile image
SRMGrandmaVolunteer

Gee, you really do want to stir things up don't you? First of all, I'm glad your PAF is mild. Mine was too, and I did a lot of things to keep it as mild as possible.....until it wasn't. I too eschewed drugs, as the risks did not outweigh the benefits in my case, and other than medications for my blood pressure did not take any rate or rhythm drugs until after my ablation to help my heart heal. That said.....please remember that everyone is different. Many people on this forum really do need the drugs in order to be able to function with an out of control heart rhythm and rate. That is not a crutch, my friend, that is a fact. They, unlike you, may not have an arrhythmia that resolves on it's own, and they don't want their heart to remodel in the way that constant AF changes hearts....so they take medications in order to take better care of their hearts. I suspect many people who need these drugs to slow their heart to a rate that allows them to function, to work, to play will be more than anxious to share their feelings with yours, and...just a heads up...I think they may disagree with you. Wishing you NSR forever.

overmars profile image
overmars in reply to SRMGrandma

I hate taking them too but I got told I am a lifer and got them as my sentence watching people get p d on a Friday night .

Serves me right !!!

Oldbuzzard,

No ! Don't fetch yer coat ...... on yer bike ...... and keep on going !

I'm grateful for small mercies - one being that you aren't my GP :-)

in reply to

You could have tried reading my post I suppose. Is suggesting that you educate yourself really so far beyond your comprehension?

in reply to

Yeah old sport, I did just that - educate myself. I found my AF was beyond doubt vagal in origin. I consulted a Nutritionist, found a diet and for 6 years have been following it. I now only get very short, sharp bursts of AF, but only up to no more than 3 times a year. Actually, my last recorded 'AF hit' was in April 2015. I know I am not cured, I maintain my medication from NHS, I haven't had a cardioversion, I haven't needed an ablation either. I know the diet will continue to work for me, as will the meds BUT I also know that 2nd only to the piranhas and scumbags of politicians that sit in Westminster (and elsewhere) AF is the single most untrustworthy entity that I can think of.

I seldom comment on here unless either provoked or unless I feel I can contribute in a POSITIVE way, based on my experiences, to a post some poor sod has put on.

Get it ?

Mazza23 profile image
Mazza23

I just think you want us all to bite so I will just say have a good day x

I used to enjoy your posts because most of them made sense even if I didn't agree entirely.

This latest post is a different matter. What rubbish. You have absolutely no concept of how AF can affect a person and their family.

in reply to

Really? I have AF but I have no concept of how it can affect a person and their family? I know exactly how it can affect a person and their family. Here's a shocker, I don't suffer from "man flu" either.

Beta44 profile image
Beta44

Sorry to say that AF is a progressive condition.

souljacs4 profile image
souljacs4 in reply to Beta44

While AF is progressive My EP told me that everyone is different as to how it progresses. some people on here have had years between episodes and some poor souls have it on a daily basis that's the nature of the beast.

Beta44 profile image
Beta44 in reply to souljacs4

Yes, mine was fine for almost 20 years. I thought, like some others that I had under control. Unfortunately I did progress to having almost daily episodes and had to elect for ablation. Very lucky that it worked. I think that is unreasonable of some who are presently in remission to preach to others that they have all the answers when most of us know what their likely outcome is going to be.

I regularly find your posts offensive and uninformed and normally scroll past them, you caught me today.....I'll start all over again, scrolling past your uninformed and offensive posts.

in reply to

Interesting that you weren't "Hidden" in your original post. I am not at all surprised that you wish to now disassociate your name from such an ignorant responce.'

RobertELee profile image
RobertELee

Gosh, some folks on here are easily offended, aren't they? The old buzzard (there's a clue in the moniker!) is simply making a point - we may not agree with it - but he certainly doesn't offend any of us.

Leave him alone.

in reply to RobertELee

Thank you.

weezergeezer profile image
weezergeezer

Im pleased to hear your Af is mild, it may not all ways be the case, it can get a lot worse

I speak from experence mine lasted 24-36 hours per episode and would revert to NSR when it decided to, unfortunatley over a period of two years it became progressively worse up to three Af episodes a week, it was a miserable existence,

thankfully I had an abalation which was my salvation, Ive never looked back

no matter how much I exercised or how many or little drugs , vitamins I took nothing worked like the abalation !

overmars profile image
overmars

You can try a Vegan diet that speeds away the rubbish of the farm fed cruel industries ....and be even healthier

weezergeezer profile image
weezergeezer in reply to overmars

I've led a veggie lifestyle for many years,

made no difference in my case unfortunatley :-(

overmars profile image
overmars in reply to weezergeezer

So have I but I switched to Vegan .

I fill fuller and avoid the tokenistic American rubbish now ..

De de De De ..American national anthem ..

I may not be healthier but I can look an animal in the face better !

I worked with animals and trees and feel happier with them

weezergeezer profile image
weezergeezer in reply to weezergeezer

Actually to be politically correct Im a Pescatarian....

Ahhh what a relief ,a great weight of my shoulders etc ...a thousand and one appologies if I've offended or misled anyone :-)

Gmc54 profile image
Gmc54 in reply to overmars

Nice to see there is another Vegan on the group! :)

overmars profile image
overmars in reply to Gmc54

Yes ..why not be a Vegan ..it has to be a better choice ...

If it doesn't spoil the enjoyment too much, I would not push yourself the last 10% on the bike.

in reply to

I don't orchardworker, or at least I try not too. What I am trying to pin down is what that last 10% means when in AF as opposed to when not in AF.

wendicarro profile image
wendicarro

Oh well? good luck, your comments had the desired effect up to a point!!!

I think this website is for people who are really struggling and simply do not have the

energy or condition to be able to walk any distance or cope with everyday tasks without being breathless etc let alone cycle as they want??

CDreamer profile image
CDreamer in reply to wendicarro

Completely DISAGREE!

This site exists for everyone (with AF/AFl) who wants help and support and for those who want to offer help and support, and for those who wish to offer experiences to some who need inspiration, we have some very young and fit people, some of whom are Olympic atheletes, with AF. Everyone's experiences are valid and a little more tolerance is appreciated.

wendicarro profile image
wendicarro in reply to CDreamer

Yes of course it is for all matters AF ,the point I am making is some of us are not fortunate enough to be able to take to our cycles as we struggle with everyday tasks and yes everyone's experience is unique to them and very valid whatever age !

CDreamer profile image
CDreamer in reply to wendicarro

And that is hard to live with and it is easy to project our 'hard done by' feelings onto others, we get that, and for some people exercise IS their drug.

The only person I ever have heard of who died as a direct result of AF was a very fit 26 year old who would not take medical advice, even though his Mum, a nurse, pleaded with him to stop exercising so vigorously - but he had been trained to 'push through the pain' - so he went into heart failure and died. Very tragic.

I think OldBuzzard's posts offer hope and inspiration to many and he is very specific on how he exercises safely.

Rellim296 profile image
Rellim296 in reply to CDreamer

We might have mild AF, or it might be severe. The impact of it - and the medication we are persuaded to take because of it - on our lives is often more significant than the AF itself.

Kazibo profile image
Kazibo in reply to CDreamer

Here! here!

in reply to CDreamer

Thankyou CDreamer, I obviously understand that some will fundamentally disagree with my post. Surely that shouldn't stop me from offering a different viewpoint? Sadly it would seem that some on here think that a different approach is unacceptable.

CDreamer profile image
CDreamer

Some people will cycle and it will do them good, others whilst others pull them down and try to spoil their fun - do it anyway!

Some people need to take drugs to relieve their symptoms and to make life tolerable, others will call them junkies - do it anyway!

Personally the farthest I ever cycled after diagnosis was 10 miles - on the flattest bit of Devon I could find and that was only once - I was delighted I managed that!

We all do whatever we can do, or have to do to live.

Sorry that your cage is rattled OldBuzzard but me wonders if the thee protest too much?

Best wishes CD

in reply to CDreamer

Perhaps I do protest too much CD. Perhaps I a don't express myself very well on my posts. I wish that I had the patience and wisdom of the likes of Grandma, BobD, Kodaska and yourself. Sadly I don't and when I feel that I have been trying to be positive and supportive in my posts but am then accused of being offensive, and seemingly viewed as being arogent and boastfull I do protest.

Too much? Maybe so but why should I be brought down by those others who also protest too much?

BobD profile image
BobDVolunteer

Hi Buzzard,

I think we understand each other having had several good chats off forum and to an extent I do know where you are coming from. I am , however, appalled by the reactions of some people above . I may consider you to be wrong but I will defend to my last breath your right to be so.

Personally having been an adrenaline junky most of my life I understand your wish to push your body to extremes even though I also know that is it not always good to do so. There are countless occasions when "athletes " come here and bemoan the fact that they have AF and all I want to do is scream "well stop being a pratt then " but of course that would not be either professional or helpful and is also only my opinion.

Regarding drugs, here I do agree to some extent. I often in the past have questioned the use of bisoprolol and in my opinion it is used far too much and often for the wrong reasons. It is the fall back drug of choice for most GPs and many cardiologists but as recent research has shown it is often wrongly prescribed where the AF is vagally mediated. There is little done to establish the type of AF which is why this happens. Also I often read of people taking it who then end up with such low heart rates that doctors then send them down the pacemaker route. WHY?????

Although I can never give drug advice I often feel that for some people the side effects of the drugs they are taking may be making them feel more ill than the condition they are trying to control.

Many people trust doctors implicitly and never question what they are given and that is as wrong as refusing to accept medical advice BUT it is important to investigate and question everything you stuff down your throat, food or drug. Knowledge is power as I keep on saying.

No old friend don't get your coat and if my post offends I will see you down the pub at lunchtime.

in reply to BobD

As always, the perfect responce Bob.

This post has done it's job and got tongues wagging. If just one person accepts the thrust of the post, reads up on the drug that they are taking and starts to weigh up the pros and cons they can then make an informed decision and job done.

I have been a little surprised at some of the vitriol, quite how my post on "Mindfulness" can be viewed as offensive I have no idea but that is the problem with forums. You can't see the twinkle in the other person's eyes!

If taking offence at your post is the only way that I'm going to get you down the pub to buy a round then so be it.....I am highly offended, mine's a pint of Old Buzzard sir!

BobD profile image
BobDVolunteer in reply to

Put it on my tab!

Nannadee profile image
Nannadee in reply to BobD

Wish I lived near enough to meet you two down the pub!!

My tipple ( on your tab, of course Bob😄) would be a large rose Pinot Grigio please or even a double G & T. 👍🍷

in reply to Nannadee

Large G&T it is then Nannadee, best get down here before the ice melts though!

Nannadee profile image
Nannadee in reply to

I wish.

souljacs4 profile image
souljacs4 in reply to

There are over a million people in the UK with AF and there are 4,253 people on this site so there are many people out there dealing with this condition. I don't think there is enough data on AF in general for us know which treatments are the best. only time will tell.

we may look back and think what were they doing burning holes in peoples hearts but for now its all we have. "We may have all come on different ships but we're in the same boat now" Martin Luther King.

Dancerandsharon profile image
Dancerandsharon in reply to

I don't have Afib so I can only speak about the issues I have with my heart. I have tachycardia that lasts for hours on end, chronic pvcs and pacs. My cardiologist put me on beta blockers to control these issues, the side effects even after months were unbelievable. I couldn't sleep, I had nightmares, I started getting depressed and to be honest I didn't really find the medication worked all that well. I started on a magnesium supplement, vitamin D, coq10, changed my diet completely with fresh fruits and veggies,fish and skinless chicken, I also started really good exercise routine that included yoga which I have discovered I love. I cut out caffeine and added a lot more water to my diet. I have to say I'm not sure what is helping out of these things or if it is a combination of all these things but I havent had any issues in a while and I hope to continue to not to. I really believe the exercise has helped tremendously, I feel crappy on the days I don't exercise now.

teach2learn profile image
teach2learn in reply to Dancerandsharon

Imagine how distressing it is to already be DOING all those things, and developing full time afib anyway. And no medications helped, only ablation. As they say, everyone (and their situation) is different.

Kodaska profile image
Kodaska in reply to

Yup, knocking people out of their complacency is the curmudgeon's job. I've been doing that since before I qualified for the name!

But let's also be sensitive - a lot of people are struggling a lot worse than we are. If they react emotionally it's because they've been poked in a touchy place. That's not necessarily a bad thing, but we should try not to provoke such suffering needlessly.

If I can make it to the pub, you can recommend a dark, not-too-bitter draft, something along the lines of a smooth stout. I'll buy.

in reply to Kodaska

We have a similar taste in beer by the sound of it Kodaska and so we'll start with a pint of Old Buzzard and then go on to the Old Peculier.

overmars profile image
overmars

A charitable reply .

Gmc54 profile image
Gmc54

I think you have a point re. the drugs, but only for those of us who are only mildly affected by AF. I took sotolol for years, but after reading a post from another member of this group about this drug I approached my doctor about coming off it. He agreed to let me stop taking it and I noticed absolutely no difference at all, so I had taken it for years as prescribed but was receiving no benefit whatsoever.

However for those who have AF to a greater degree than us........well, I can understand why they are annoyed by your post. We are all different, and need different treatment. We should be aware of that and thank our lucky stars.

Offcut profile image
Offcut

As a long term AF'er but with multi conditions I have had my drugs changed more times than I would like, but without them it has been proven a problem to me. I have had 3 Ablations and 9 CV still can have months of AF.

If you feel fine without. I am fine with that.

Enjoy your Fitness and NSR but remove the blinkers when you are cycling please, safety first?

Be Well

Jason1971 profile image
Jason1971

Brave post Oldbuzzard, but you are entitled to your views. What may not be right for one person may be for another. What I have learnt from your post is some people are mighty touchy about their AF. "We're all different" is something I must read on this site daily. We see posts about how somebody swears by this drug, vitamin supplement, diet, exercise regime, blah, blah blah. If it works for said person, then they should keep up the good work and long may their AF be dormant. I'm still trying to find that magic cure, but until I do, I will go by the advice of my EP, which is currently a 2nd ablation. Anyway it's time to don my fedora hat and grab my whip to continue on the trail of the Holy Grail.

Good luck oldbuzzard.

MarkS profile image
MarkS

This website is for all who suffer from AF and we should respect all views. I agree with some things theoldbuzzard says. We are over-medicated. I read a lot on here of people who take flecainide and amiodarone and are still in AF. They've got the worst of both worlds - anti-arrhythmics have a higher mortality and they're still in AF.

Rate control drugs are a personal thing, I hated sotalol and bisoprolol, they just wiped me out without achieving anything. However I got on very well with diltiazem.

I'm sure there are a lot of people on this site who would be better off without drugs (other than anti-coags that I'm very much in favour of)

However AF is an inflammatory condition and you need to find out what is causing your inflammation. For 80% of people it's life style - being overweight, poor diet, alcohol, sleep apnea, high blood pressure and inflammatory conditions (infections, trauma, gum inflammation), lack of exercise and also excess exercise. So the first thing is to do is work out what might be causing the AF and sort that out.

For me it was probably genetic, both my father and mother had AF, but possibly exacerbated by excess exercise (I rowed and have since cycled a lot, played hockey, etc.).

I think there is a happy medium to be struck with exercise. Since my ablation I have moderated my exercise, no more cycling marathons to Paris, and I do feel better for it and am AF free. However exercise did help me cope much better with AF. AF reduces blood flow by around 15% or so. If you exercise that's much easier to handle.

mikeymike7 profile image
mikeymike7

I've never liked taking drugs and was so glad to be able to stop them all as a result of a PVI cryoablation. However, when one is in fast AF for hours on end and flecainide stops it, why wouldn't you take it? When I had to stop using flecainide as it was contraindicated, the sotalol I subsequently took reduced the fast heart rate to a much more comfortable one. Again, why would I not take it? It is for me, all about balance ie weighing up the positives against the negatives. Drugs always have unwanted side-effects, but taken with care and guidance,can also be so beneficial.

terryw profile image
terryw

Hi theoldbuzzard. I have a little knowledge which is a dan.........! If SR has a base point of 1 then with AF you are 5 times more likely to have a stroke. If you are on a 'blood thinner' 2 times more likely. I am assuming that this ratio applies whether in paroxysmal, persistent or permanent AF. Sure if you are in AF you may not have a stroke, and yes if you are in SR you could have a stroke.The point is average probabilities of outcomes. Professor Schilling's video referred to in an earlier post on this Site showed he had a priority treatment of stroke prevention, rate control, and rhythm control if the quality of life impact necessitated it.I swim 40 lengths once a week and lead a Health Walking Group whether in SR or AF, but it is harder for me in AF. Yep! I love analysing data, and Yep! I was an Accountant.My approach is to get as many facts as one can (they can change!), and make an assessment for the best course of action for my particular circumstances.

davegm profile image
davegm

I partly agree with the theoldbuzzard's suggestion of why take the drugs if you don't need to but in the main those who are taking them regularly DO need to, to be able to cope with the symptoms of AF.

For those with mild infrequent AF symptoms like theoldbuzzard the NICE recommendations are for a pill in the pocket approach. So those people are not taking the drugs all of the time.

Please recognise that many with debilitating symptoms NEED to take these drugs to keep the AF at bay and to be able to function.

Theoldbuzzard

Do you take the same view of anticoagualtion? .....or do you go along with your EP and the NICE recommendations?

What fun! Great to see so much conversation being generated.

Yes I do take the same view on anticoagulants. I have read up on them and have decided to continue taking warfarin as, on balance, this seems to be the most sensible approach for me.

Oh hello, more incoming!.....

davegm profile image
davegm in reply to

.....but is that he same view? to me it deems contrary.

On the one hand anticoagulation, you are taking the advice of the EP, on the other rate/ rhythm drugs you are advocating ignoring the EP advice and not taking them!

in reply to davegm

Not really Dave, and I'm not advocating ignoring an EP's advice either but my taking warfarin is a good example of what I'm suggesting.

I was originally prescribed warfarin by my GP. At the time we discussed the various options and jointly agreed on warfarin. He made no assessment as to whether or not I actually needed to be taking an anticoagulant, it was just automatically assumed that I needed them.

I later discovered that I am infact a zero on the CHAD and considered stopping the warfarin. My continuation was based on reading about warfarin, the fact that I seem to have no side effects from taking it and that it is highly recommended from the age of 65 even with a 0 on the CHAD. Add to that the, possibly misplaced, confidence it gives me to allow my heart rate to reach higher levels without panicking about strokes and I have done as I suggested in my original post. I'm not just taking warfarin because a GP, possibly wrongly, told me to.

I am suggesting that people apply that same logic to HR and anti arythmia drugs that's all.

Annaelizabeth profile image
Annaelizabeth in reply to

Love it, old buzzard, oodles of common sense! It is a rotten condition, many I feel take prescribed medication because it helps them allay a very great fear they understandably have, many take it because it does make them feel better. Many listen to advice from Eps, cardiologists, forums like this and then make up their own mind. Ultimately we have free will, freedom of choice and the right to exercise that together with the acceptance of responsibility for those choices.

Such fun!!

davegm profile image
davegm in reply to

theoldbuzzard

your original post re the rate and rhythm drugs states

.".........Why are you taking them? No really, why are you taking them? Research what they do. Not withstanding that they have been prescribed. Do you really need to be taking........

Be honest, do you REALLY need to be taking these drugs or are they just a crutch?........."

you have confirmed that you have a CHADS score of 0 so I take it you are continuing anticoagulation because it is ...".just a crutch"?

I think it was perhaps the tone of the original post rather than the actual content that seemed to annoy a number of people here.

We all have a free will to decide these things and I fully respect your position but we all have to make up are own mind on these important matters in discussion with our EPs.

in reply to davegm

Dave, you are so right there. It was most certainly the tone which contributed to indignation !!

We do not all take our drugs blindly. I most certainly don't.

Sandra

in reply to

But most do take drugs blindly. GPs regularly prescribe drugs blindly and their patients take them blindly. The most obvious example is thalidomide, the most recent is the potentially disastrous overprescribing of antibiotics. We all know examples of GPs prescribing antibiotics for the common cold and people with a cold happily taking those drugs and believing that these antibiotics have worked.

At the risk of being vilified once again I will point out that antibiotics are completely useless in the treatment of the common cold.

in reply to davegm

You make a very fare point about anti-coagulants and how I view them Dave.

In retrospect perhaps it would have been better if I had said that I apply a similar line of thinking but starting with a different assumption.

Anti-coagulants might save your life and so there needs to be a good reason not to take them. HR and arythmia drugs will not save your life and might do you more harm than good and so you need to have a very good reason to take them.

Must go, I'm the next heretic in line for a jolly good stoning......

zara1977 profile image
zara1977

I have an active and wonderful 40 hour a week job and after three ablations, my EP has concluded I need to be on drugs for control - who knows what new techniques might come out? I've tried without and I was very ill. I never go to doctor or hospital with af episodes but ride them out. My current drug cocktail is working efficiently and allowing me to live life to the full. I think the view that we can all heal ourselves through exercise, positive thinking and careful eating has a degree of truth but at the moment it is a view that seems to be gathering momentum (along with the idea that almost everything we get is our own fault) and I think this is as unhealthy as sitting back, expecting the medical profession to fix you without some effort yourself. Drugs are simply a therapy, we are lucky to have such a range and I consider myself seriously lucky to be able to control my really quite severe AF to be able to work at an acceptable capacity.

Good on you OldBuzzard. It'shorses for courses. I question every thing have been proved right yet again with my husband's diagnosis and prescribed medications. one consultant said nothing was wrong and another a locum saying there was something wrong. if we had gone with her recommendations and diagnosis things would be a lot different.

yes some people do need medication to help them get through this, but my experience with the drug I was put on when I was experiencing SVT's making the problem worse, came off the medication, less events, left the job, even better, no medication and no SVT these days and have been this way for over five years. if I feel an event coming on, I can control it and bring everything back to normal by using coping tactics. My Gp is not concerned about what I do.

You have stirred up some people and I don't think any argument would convince a lot of people to look at the medications they are taking and why they are taking them.

oh anticoagulants, if they are needed, yes...why take then if not needed?

in reply to

Thanks, you have made the point in a far better way than I did!

Nannadee profile image
Nannadee

Hi theoldbuzzard. I totally agree with you I have gradually taken myself off 200mg of Flecainide and 5mg of Bisoprolol as I had no energy and was sweating so badly and my paf had stopped but I had permanent ectopics after my meds were juggled.

I am now in normal sr and feel so much better with more energy.

I know that at some point I will have an attack of AF but, like you, know that after a day or 2my heart will return to normal..

I am meant to be having an ablation done before April, but am now considering saying no thanks unless something dire happens in between.

Have you had an ablation?

in reply to Nannadee

No I haven't had an ablation. For me, at this time, the risks out way the possible advantages. Much like the drugs infact!

Nannadee profile image
Nannadee in reply to

That's how I feel at the moment. The risks are scary. And my philosophy is, if it's not broken why mend it.

Granted, I haven't had a bad episode of AF since the juggled meds but I wasn't happy about the constant ectopics.

So unless anything changes, I will just take my anticoagulant and nothing else because it's nice to feel more human again.

Devine75 profile image
Devine75 in reply to Nannadee

Did the ectopics stops along with the meds? I've had two ablations and left with ectopics which are awful x

Nannadee profile image
Nannadee in reply to Devine75

Yes Devine75 they have.

I never had ectopics til my meds were juggled, just long episodes of paf.

But now I've stopped all meds, the ectopics have gone.

I had a short burst of AF last nite but it didn't last long.

So I'm now thinking that it was the meds combination that gave me the ectopics. Not good eh.

Hope your ectopics soon go. X

paulh1 profile image
paulh1

I just had a cryoablation done. reason being that the QUALITY of my life ,eventhough I have PAF, with meds was starting to suffer. Starting to get aflutter and afib while swimming and on my road bike. I too can snap out of these conditions relatively quickly but that is not the point. According to Dr. Schilling,the chances of you getting a stroke are almost the same whether you have 2 episodes of afib a year or 200. Also, it gave me an opportunity to reduce or eliminate the number of drugs I am currently on. I will know in about 6 months or so if I can. I will always be on anticoagulants due to my stents. I accept that. I also accept that some people with afib need way more meds than I do due to the fact of their condition. Believe me if I could take one pill with no adverse side effects that would allow me to do my exercise routine like before you could bet my butt I'd do it. It's lot simpler than the ablation. "Pride cometh before the fall"

Resting heart rate

Kodaska profile image
Kodaska

I haven't read the 54 replies yet (so far) but right off the bat I want to thank you for being such a curmudgeon. Warms my dried-up prune of a heart, it does. :-)

You are indeed lucky, compared to what other people go through. It isn't an insult, more likely a statement of appreciation. So let others appreciate and maybe while you're at it, appreciate your own good fortune. Just think, we don't have Ehlers-Danlos Syndrome, mitochondrial disease, eosinophilic esophagitis, or a host of other debilitating chronic disorders.

We are what I've heard referred to as "the temporarily able-bodied" - just not quite as able-bodied as we'd like.

I do appreciate your advice on drugs, and I think you know I see it the same way. I've stopped the anticoagulant because I'm OK with a 2.2% risk of stroke. I've stopped the Flomax because a supplement I've been taking has improved my urinary symptoms and lowered my PSA number. And I'm currently doing a test to see if I can stop my blood pressure med. Just don't suggest I stop taking Ritalin. That's my brain food.

Have a good ride!

in reply to Kodaska

Namaste Kodaska, I have no idea what Ritalin is but if you're willing to take it then it might be worth a try!

Kodaska profile image
Kodaska in reply to

Ritalin is methylphenidate, one of the most popular drugs for treating ADD (attention deficit disorder). I've taken it for 20 years and, though not addicted, would hate to do without it. It's like putting glasses on my near-sighted brain. It's a federally-controlled substance because it's a neurostimulant, i.e., an "upper." It gives people who don't need it a rush, or high. It has the opposite effect In people who do need it, i.e., it settles their overactive minds and enables them to focus. If I'd had it when I was in grad school I probably would have earned my PhD. As it was, I couldn't focus well enough to organize the dissertation proposal.

EngMac profile image
EngMac

I have seen data in studies that indicates some drugs substantially impact mortality; but, of course, the specific health issues and age of each person are underlying factors. It is probably a good idea to ask your attending doctor if the drug prescribed will impact mortality for you; and, if not prescribed, what is the difference. Whether you can believe the validity of the answer can be problematic since it may be a bit of an educated guess. Apparently, using some drugs to attain SR has about the same risk as staying in AF. A bit of a dogs breakfast really. Maybe there are lifestyle benefits obtained by taking drugs that become paramount.

CDreamer profile image
CDreamer in reply to EngMac

At an educational talk given by our local EP quite recently - who by the way believes in lifestyle changes over and above drugs as a first line 'treatment' - the question was asked as to why treat AF if it is not life-threatening - the short answer - treatment advice is directly linked to a) severity of measurable symptoms (objective view) b) how much your your life is impacted by AF (subjective view).

There are consequences to all treatments and life-styles - we hope that the consequences are beneficial, but as you say it's really a guessing game for the individual - until personalised medicine is developed which is my hope for the future!

Kodaska profile image
Kodaska in reply to CDreamer

What is and isn't life-threatening can be a matter of lifestyle itself.

I'm a canoeing instructor, and two summers ago I wanted to expand my teaching to the local university's outing club. They required a swim test, which should have been easy as pie. It involved a short swim (50 yards) and 5 minutes of treading water. I nearly drowned because my circulation wasn't good enough to fuel my body's work demands.

Also, for the past 8 years, I've enjoyed two 10-day wilderness canoe trips each year. I generally go alone, which makes hazards much more significant. If I were to capsize farther than about 50 yards from shore, rescuing myself and my gear would be difficult in the best of circumstances. If I were fibrillating it would be unlikely because, like the swim test, I wouldn't be able to work as hard as the situation required - even though I'd be wearing a life jacket.

My decision to have the ablation last May was for the purpose of maintaining peak physical function for outdoor activities. The alternative was to allow AF to limit my active lifestyle, which doesn't exactly float my boat, so to speak.

As for personalized medicine, my advice to be your own doctor is all about just that. You personalize your care by taking medical decisions into your own hands. Doctors can make recommendations based on science, statistics, their own biases, and their relationship with pharmaceutical and insurance companies, but the decisions should be your own.

An example is how I've handled my enlarged prostate. My doc said to forget about it. I decided to take an herbal supplement that he called worthless. A year later my PSA number (an indicator of prostate growth) was more than 10% lower, something pretty much unheard of except when taking a particularly risky drug.

Well, that's more than enough from me. I hope this isn't too preachy.

CDreamer profile image
CDreamer in reply to Kodaska

Good point - and exactly the argument the EP used - I used to sail & compete and I was taught if I took to sea I need to be prepared for trouble and know how to get myself out of it - unlike our American sailing friends in Cornwall - which I have done on more than one occasion. I stopped sailing after one capsize amongst moored boats in an estuary on an ebb tide of about 2 knots with an inexperienced crew. I righted the boat and got us back to shore, race abandoned, but it brought it home to me that I really was no longer fit enough to do that safely - but that is contextual.

I would describe that as life-changing, not life threatening as there is a personal choice as to put ourselves in that context whereas for others with heart disease there is an immediate threat of death without intervention.

in reply to CDreamer

Can I ask you to elaborate on that throwaway line "unlike our American sailing friends in Cornwall"?

I'm assuming Cornwall UK which is where we also sail. Should we be looking out for your friends?

CDreamer profile image
CDreamer in reply to

Oh, it might have been just local news but 2 American old timers were trying to sail from Norway back to US - UNBELIEVABLE death trap of a boat and no seamanship whatsoever. They have been rescued 9 times since leaving Norway - ermmm leaving at this time with these storms? That have been by Norwegians, Denmark, Ireland & RNLI no less than 9 times - the boat caught fire after they left a candle too close to hanging clothes and the worst of it was they see nothing wrong in and openly said the rescue services were doing nothing else and it was good practice for them........they enraged the 5 counties of the SW and many called for their boat to be impounded because they didn't seem to understand that ther is NO rescue service in the middle of the Atlantic

I was trying to post a link but go to BBC news and search rescued 9 times to see the 'Storm' they created. Yours was just a light breeze in comparison.

Kodaska profile image
Kodaska in reply to Kodaska

What kind of boat were you sailing? I gather it was a dinghy. I used to race dinghies as well as a few small cruisers and a Soling. That went by the way when I sold my sailboat in favor of canoes, but the point is the same. Water sports are safe as long as you can manage the hazards. If not, as you say, it calls for a lifestyle change.

CDreamer profile image
CDreamer in reply to Kodaska

Hi - we have more common ground - Dad had an Opera - gaff rigged 16ft sailed in just 1 club Hoylake in NW. Then everything through my teens as we used to team race, then settled in Merlin Rockets for about 10 years, then got too croaky so Comet Trio but GPs, Enterprises, RS400s, Laser & Solo occassionaly and cruising in between taking part in the 1st Clipper - Hong Kong to Plymouth.H

I started crewing but turned out I was a much better helm than crew.

Kodaska profile image
Kodaska in reply to Kodaska

Is this the boat your Dad had?

1001boats.blogspot.com/2011...

It looks like a dry, seaworthy craft.

Clearly, you've had some fun on the water!

I raced Flying Juniors and 420s with the US Midwest Collegiate Sailing Assn for a few years, mostly as crew. I trained new skippers because I was good at boat-handling and trim. I had an 18-foot Buccaneer for 15 years and raced a few times. It was hard to find crew - much easier to pull jib for someone else. Now I long for the peace of a quiet or rocky river.

Well that sorted that ! The joys of the freedom of speech, thought and action ..... make the most of it as 'Call me Dave' doesn't believe in it and so we may not have it much longer. Onwards and upwards comrades in AF :-) Lol !!!

Musetta profile image
Musetta

Free world, free speech - just a couple of "minor: things - quote "as far as I'm concerned my AF is mild because I make it so" unquote - um, firstly, what to you class as mild AF and secondly, how do you make it so? I'm curious

in reply to Musetta

I have no idea how to categorise my AF. I have used the term in past posts because I didn't want to minimise how others felt about their AF. That seems to have been a mistake as it's use has been misunderstood and, seemingly, seen as offensive.

If my AF is mild then perhaps I make it so by ignoring it as best I can and not letting it dictate how I live my life....sorry, no offence meant.

Musetta profile image
Musetta

I'd say regular heart rate

Musetta profile image
Musetta

Ooops mate, I meant resting heart rate Cheers :)

Bollox2AF profile image
Bollox2AF

Buzzard,I don't want to cause any controversy but your post smacks of "the great i'am"...who obviously doesn't regard his anticoagulant as a "crutch"...I have a idea where you are coming from,but to put everyone under the same umbrella who has this condition,well it's preposterous...the medication DOES work...the main problem is finding the RIGHT medication,it can be a minefield for some sufferers finding the right one,with the right dose...Good Luck and all the best with your "mild AF" just a pity we all ain't so lucky...then we can all "bin" our crutches....Terry.

in reply to Bollox2AF

"I don't want to cause any controversy but...." Rather similar to "With all due respect" I suspect. Medication MIGHT work, however it is just as likely to do harm. Yes it is a minefield but why approach it from the point of view that you need any medication?

Nobody needs this medication in order to survive. For some it will help cope with AF and do no harm, for others it will do more harm than good. By trying to put forward this approach I am being accused of all sorts of things, offence, great I am, what ever.

Just why do you think that it is wrong for me to put forward a different approach but fine for you and others to be insulting and offensive?

You are just as lucky as I am and so I can fully recommend binning your crutches and hardening the €#%$ up.

djmnet profile image
djmnet

You nailed it, Buzzard!

djroute66 profile image
djroute66

Look like I might be joining you through the door, this site is very helpful and supportive and long may it be so ,but when I first came here three years ago it left me feeling hopeless and full of fear, what with AF begets AF , and the first page telling us how we are prime candidates for having a stroke i did wonder at the time how was this supposed to make me feel better,at the time I was on all the usual meds with all the usual side effects so I was already at a low ,now I have a pip, having only a few attacks a year my fears are getting worse with the attacks getting closer together. I feel ablation should be offered at an earlier stage , why in the name of sanity wait until the drugs no longer work where your options have been reduce to zero . I just spent nearly six hours in A&E sat with what all I can describe as rejects from the jeremy kyle show, after being in AF for over 8 hours prievously l only feel AF in my stomach so I can't sleep with it, so sitting around A&E all that time I wasn't happy, I had a ECG in the first hour but by this time I knew my AF had gone yet I still at to wait another 5 hours to see a doctor to confirm my ECG was fine , i asked him why i only feel af in my stomach but he couldnt answer. I came home feeling drained and depressed thinking this could be the norm for the future , why must we be subject to this torture when we know what we got they know what we got, but it as got me wondering if it was the drugs or would I have come out of AF naturally, as long as the fear of stroke lurks in the background I fear we will all stay with the script religiously

in reply to djroute66

dj, last night I had pretty much decided to give in to the ISIS style pressure and give up on this forum, if you don't agree with our opinion then "line on the left, one cross each". The volunteers and many others are very supportive, sadly their efforts are subverted by the negativity and personal insults from a few posters. Some people seem to seek martyrdom in their AF and hate the suggestion that there may be an alternative approach.

I then read your post and, along with other's who might disagree but accept that other opinions are available, think that we should perhaps stay and fight the negativity so that the next newby might be greated by more positive approach than you and I have found.

in reply to

Unfortunately, since posting the above I have discovered that there is a parallel post on this subject in which comments suggest that it really is time for me to move on.

Kodaska I am truly saddened by your lack of understanding. Namaste, enjoy your trip.

GabrielleFaye profile image
GabrielleFaye

No offence taken here!

While I recognise that many people do legitimately need the various drugs they are prescribed, the thing that really gets me is how often people who are only JUST diagnosed with AF are put straight on to drugs, after just one episode! I think GPs are often way too quick to prescribe meds, without really considering or investigating all the other possible contributing factors.

So glad I wasn't prescribed anything after my first episode (other than being on an amioderone IV while in the ER), I would have been taking them for 7 years for nothing, as that's how long it was between my first and second. And I'm willing to bet I'd be worse off now if I had taken meds from the beginning.

PeterWh profile image
PeterWh

I was in persistent AF when I first saw my GP so my case might be slightly different.

I was put on 1.25mg Bisoprolol straight away and Apixaban a week later and then two weeks after that flecainide. My GP and then EP explained to me that they do this so that the different aspects are covered and then reappraise medicines in the following months as test results and assessments are completed / available. In fact I was taken off flecainide after about 6 weeks (I had a cardioversion but went back into persistent AF about 24 hours later).

djroute66 profile image
djroute66

Hi oldbuzzard

As I have already stated this site as been so helpful and supportive

To me and others and the volunteers have all my respect.but I can only tell the truth and it was a scary first experience when I first open the AdA page especially when the doctors tend to water things down .seeing it in black and white straight off did worry me. I think it's a good thing for people to rattle some cages now and then. .As one cyclist to another we have to take the up hills as well as the down hills. I am still trying to work out what af Ive got as its alway felt in my stomach which I fear that an ablation may not be on the cards for me . What is crazy is I have no follow up appointment to see the cardiologist so I now I got to badger my doctor to refer me which can take forever.

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