Lifestyle changes - would a higher profile benefit members more

[secondtry]

This Forum does an exceptional job in addressing regular medical & supplement issues we all have faced e.g. experiences with Fleacainide or Magnesium

However, 'Lifestyle changes' are given less emphasis or deemed off topic, which no doubt discourages others to expand on this area with IMHO resultant loss of benefits. In view of some high profile cardiologists & other medics (see TED talk below) now openly saying such changes are the biggest weapon at our disposal, would members here be interested in more focus in this area?

For example: Since your AF diagnosis what do you consider is the most important change(s), if any, you have made.

youtube.com/watch?v=gaY4m00...(Not working as expected?)

[Hidden]

Not sure I can agree with you. For those of us who contribute regularly, lifestyle changes are front and centre of the advice given and to the best of more knowledge, it has never been remotely considered as “off topic”.........

[secondtry in reply to Hidden]

Yes, I appreciate Lifestyle is frequently touched on but I am thinking only lightly in most cases that I have read. Say on anxiety - not just a reduction will help AF but more emphasis on how members have achieved success in that area and so on for food & more. It may be the consensus think like you that it is sufficiently covered already.

[Hidden in reply to secondtry]

I understand the point you make but none of us are experts at anything. We can all direct folk to where they can find information (as you have done) but no one should go much beyond that. That said, by all means, let’s see what others say, it is a very important issue......

[Peony4575]

On the fortunately rare occasions I have had to take drugs eg beta blockers they never agree with me so am much keener on doing my best to avoid chronic illnesses, within the limits we have of being able to influence that . Am very supportive of any discussion around lifestyle changes and tips people can share . I get Dr Chatterjees weekly podcast and the Doctors Kitchen podcast and listen on my phone when I am doing housework .

[BobD Volunteer]

Iif you read any of the posts from our regular mmbers you will see that we all promote life style changes such as weght loss, reduced stress, no alcohol. hydration etc on an ongoing basis so not sure why you think it is not considered important.

[secondtry in reply to BobD]

Just working on my own experiences that I have gained more here from the 'medical side' than I have from Lifestyle contributions, which I consider equally important and have had to research & trial most myself.

[Hidden]

Absolutely yes. I knew nothing about lifestyle interventions before my first ablation. And none of my EPs were interested in anything other than medication and further ablation. It was only after I developed permanent AFib that I learned from the arguably sometimes marginalised members of the forum, that there is another path. For me it came too late, but I blame no one but myself for that.

Arguably, early identification of AFib risk factors, education and more aggressive and active screening will avoid or at least delay the need for toxic and destructive interventions.

Dr Chatterjee?....Inspirational and right on the money and ahead of his time (2016). Important to watch right to the end where he brings it all together.

The AFA is a wonderful organisation, but I suppose it might be considered a little slow to react to innovation, or the unconventional. It’s not easy to turn around a supertanker at 20 knots, with a tug. I don’t know whether part of the problem is a deference at a senior level to the great and the good in the Electricians Union.

Some feel that an over controlling monitoring system, with an oversensitive delete button discourages freedom to discuss issues tangential to AFib. A cross bench selection of new volunteers prepared to step up in time to moderator status, to support the incomparable BobD, may be the answer.

Being on the last of my 9 lives, I couldn’t possibly comment.

[secondtry in reply to Hidden]

Far more eloquently put than my post Badger.

Just to add to my original, lip service is already paid to many lifestyle changes such as 'losing weight may help' or 'you can reduce anxiety in a number of ways' but what I think I am saying is as it is accepted that many LCs are very important, members may be encouraged by more brief mentions of personal experiences of AFers or links to longer pieces e.g. carrafibdietinfo.com ; to put this side on a par with the personal experiences we regularly give of medications usually in a lot more detail.

[Hidden in reply to secondtry]

I understand what you are saying secondtry, but I’m not sure what it is that you think can be done differently. As I understand it, and I am speaking only as a forum member, the AF Association has to go through hoops before it is permitted to make reference to or sanction any information relating to health issues. To put that into context, when BobD and I produced the two infamous factsheets regarding preparing for and recovering from an ablation, I think it took six months before the documents were finally approved for publication. It surprised me that it took so long, but it is a huge responsibility for any organisation to formally produce information relating to health issues which are due to be made available to the public. With current technology, as we all know, it is easy for individuals to cut and paste almost anything they like on this forum. We all have done it and some do it more than others. I assume, but don’t know, provided this is done within the forum rules we all sign up to, there is no problem, but if that’s not the case, I’m sure someone will say (which is why I have made BobD aware).

So I guess what I’m saying is that from a personal perspective it’s really up to members what information they make available to satisfy the very real benefits lifestyle changes can provide. The mind boggles at the level of expertise the AFA would need to access and pay for to verify information in this very diverse area. This post has already thrown up two interesting and helpful pieces of information so I would imagine that other members are more than able to make similar contributions if asked. As I said, this is my personal view, hope it helps.

[BobD Volunteer in reply to Hidden]

The thing to understand is that AF Association is a charity and any publications or written information has to be approved not just by the trustees but also the medical advisors and NHS England. The fact sheets appear as pinned posts only because of that process.

If members wish to put personal experiences on forum then so long as they are not deemed to be dangerous or missleading or in any other way contravene forum rules there is nothing to stop them doing so.

For AF Association to produce a guide to life style changes would be a whole lot more difficult and from what little I know almost impossible with the greatly reduced staff and facilities currently available during the pandemic not to mention the greatly reduced income stream that has resulted from such.

In the meantime I will continue to refer people to The Legacy trials and promoting what we do know about life style.

[Peony4575 in reply to secondtry]

I would always go for lifestyle changes ahead of drugs or interventions where possible . I think one difficulty is measuring the effects of lifestyle changes ( with ex medical rep hat on). You can for example measure the difference in cholesterol that a daily benecol drink might make, but the effect of lifestyle changes tend to be subjective rather than measurable and reproducible . That said, The Doctors Kitchen chap reversed his AF when he was 24 by lifestyle changes , diet and exercise, he and his cardiology dept were in a good place to monitor what happened. I was pleased to see he had an article in The Daily Telegraph yesterday . I would certainly applaud and support anyone coming on and documenting things that have worked for them as I have received valuable such tips from this site.So please please if you come across anything you might feel useful do share. If some people aren’t interested they don’t have to read it but neither should they try to censor/discourage such items from those of us who are

[secondtry in reply to Peony4575]

Absolutely I will, but I note from BobD & Flapjack that it is important to keep repeating that such posts are individual experiences & research papers are those that one finds interesting personally and in no way are meant to be universal medical advice.

[Peony4575 in reply to Hidden]

Badgers get more than nine lives. Wise old Badger

[Elli86]

I’d agree there are already quite a few good threads reccomending various different lifestyle changes that can be made. However I would be very interested in hearing more and maybe more in-depth 100%. Good shout secondtry 👍

[mush99]

I've had a fair bit of success with lifestyle changes. I was diagnosed with paroxysmal AF 18 months ago and was originally given a pill in pocket, atenol/flecainide. A lot of my episodes were occurring at night and I knew I had sleep apnea from my wife telling me and from waking up short of breath. I tackled this by giving up alcohol, eating 3 hours before bed plus taking magnesium and potassium. I was also having attacks after certain meals and drinks, the fruit juice I replaced the beer with was the first to go and after quite a lot of trial and error, white rice, pasta and white bread, all refined carbs that produce blood sugar spikes. I find I can still have raw sugar in coffee etc, plus cake biscuits etc, but try not to overindulge. I returned to the cardio 12 months after diagnosis and after telling him that I'd had 15 episodes over the course of the year he wanted to put me on fulltime meds, he wasn't that interested in my efforts to control it myself, but I felt I was winning and decided to stay on the PIP. In the last seven months I have only had one episode and I am pleased I didn't go on the fulltime meds, because I would have thought it was them doing the job and not the lifestyle changes. Couple of other things I have started taking are apple cider vinegar and taurine. An added bonus is no gout for 12 months.

[secondtry in reply to mush99]

Brilliant well done, try a Breathright nasal strip to decrease sleep apnea.