Almost 10 years on this Forum - and only a ... - AF Association

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Almost 10 years on this Forum - and only a little wiser

CDreamer profile image
56 Replies

This morning I have been reflecting - what a LOT has happened in those 10 years.

Looking at the 286 posts I have written this morning - there doesn’t seem to be anything new to add.

We are asking the same questions - and mostly getting the same replies. This morning there are several questions about drugs and treatments - 9.5 years ago I was asking exactly that question.

That is 10 years of little change in treatments - other than Mini Maze becoming more accessible.

Here is my very first post - April 2013

Still of the same opinion - unless proven to be life saving or life enhancing - no thanks!

Or am I missing something?

56 Replies
Paulbounce profile image

Morning CD.

That's a very interesting first post. I'm going to read it again.


Singwell profile image

"Have you heard the one about the cardiologist, the endocrinologist and gastrologist?" You won't have done of course because the medical system we currently have doesn't allow for them to confer over individual patients.

Or perhaps it's fair to say- very rarely. That's the problem. I have all 3 systems interacting that have led me here.

meadfoot profile image
meadfoot in reply to Singwell

Absolutely Singwell. I currently have a gastroenterologist a Hepatic consultant and shortly a colorectal surgeon being added to the mix around my gastric issues and do they speak to each other, do they heck. In fact sadly they shut me down when I dare to ask anything which may stray into one of the others areas as though there is an invisible cut off line. But then then I am whole person but that doesnt seem to equate or matter. Very frustrating.

CDreamer profile image
CDreamer in reply to meadfoot

The only specialist I am now seeing is a neurologist because apart from anticoagulants the only meds I’m taking need to be supervised by Neuro - despite dealing with 5 diagnosed conditions. That’s not particularly because I want it that way just because I can’t get to see the other specialities since I moved.

Afibflipper profile image
Afibflipper in reply to CDreamer

You’ve pointed out something there - we’ve talked about moving in the next few years - it’s bad when it’s not just a case of finding the right house in an area you like but also factoring in as to the number of good GP/Consultants and specialists for what you already have wrong (thinking will they actually take me on with all those health things I have). Your post from 10 years ago was very interesting

BobD profile image

You are right of course CD. In 2008, full of enthusiasm and hope I gave a presentation at HRC Patients Day during which I compared progress in AF treatment with aviation and suggested that if the first ablation in Bordeaux was the Wright Bros first flight at Kittyhawk we were about level with the end of the first world war. I hoped that soon we would break the sound barrier and go into space.

Afterwards Richard Schilling told me that while he admired my hope he felt that development had plateaued and there was little new coming along. He went on to tell me that those improvemnts in treatment (such as the De Vinci robot) were mainly just making life easier for the EPs rather than improving outcomes. For sure we have heard little recently about it or the huge magnetically steered catheter system being trialed by Sabine Ernst. There is much bugled hope regarding pulse field ablation but like many new ideas it is only available in a very few centres and for a few carefully selected patients.

In the 16 years I have been a member of AFA there have been a few improvements in treatment but you are right. We haven't learned that much.

wilsond profile image

I joined in March 2015,and totally agree with your thoughts CD!The lack of a holistic approach is woeful. In another area of life,education,it is the same.EG Joe Bloggs needs particular typefonts used in handouts etc to be able to read well. We don't then,surely limit access to this in English lessons? Don't we read in Maths,Science,Geography etc?

For 20 years I banged on about it to little effect.

To get the full picture of how a pstient us affected by ,and how they experience,AF we need to be able to see it!

Slightly depressing😐

Visigoth profile image

I was very interested to read your first post and also rather depressed at the lack of progress, as someone whose AF journey started only 2.5 years ago! But I have long been frustrated that the medical profession operates in silos and I often wonder how much healthier we might be if only there were more joined up thinking!

LaceyLady profile image

Well, I’ve said before, I’m qualified in Reflexology, yes I have been right on several occasions much to medic’s surprise! Emotional Freedom Technique, Ear treatment Called ‘Thermo-Auricular therapy’ that I use with acupressure massage that alleviates ear and sinus disorders. AND I DON’T only do ONE ear! I have always been interested in the human body and it’s systems, and why the heck do they not think they all work in conjunction with each other??

I’ve recently be advised to go back to work by a dear friend 💗

LaceyLady profile image
LaceyLady in reply to LaceyLady

AND been told by my GP & diabetic nurse I’m taking my diabetes too seriously 🤷🏼‍♀️

bassets profile image
bassets in reply to LaceyLady

Good grief! Really?

Beater profile image
Beater in reply to LaceyLady

That just gets in the way of them prescribing more poison drugs.

LaceyLady profile image
LaceyLady in reply to Beater

They won’t get an easy ride with me!

Beater profile image
Beater in reply to LaceyLady

Stand your ground. I am now fighting for my life because of their drugs.

stoneyrosed profile image
stoneyrosed in reply to LaceyLady

I have just finished reading the book “ Molecules of Emotion” by Candace Pert the famous scientist. She tells how everything is linked by the super highway of molecules. A must read if your into mind body healing. I believe us afibbers have something in common, that either we have done through trauma or through a bodily defect or both. I believe there is a link there somewhere.

CDreamer profile image
CDreamer in reply to stoneyrosed

I will get that one - thanks!

LaceyLady profile image
LaceyLady in reply to stoneyrosed

😊 Such a massive area. I read mind body spirit.

stoneyrosed profile image
stoneyrosed in reply to LaceyLady

Perhaps a study in our personalities for example, are all of us a little short fused from a young age, have we all been through some major trauma in life even a car accident or an attack of some sort. Have we got stuck emotionally and not been able to release stress. This can all lead to a big release of adrenaline and cortisol which of course can cause palpitations etc. A shot in the dark maybe but perhaps a link and a cause.

LaceyLady profile image
LaceyLady in reply to stoneyrosed

oh there certainly are links. Stress affects everything, “it acts like a tourniquet on the systems’ a quote from a top Reflexologist who wrote a book I read.

Yes you’re right about life’s stresses and I can say my life has been full of them 😵‍💫

CDreamer profile image
CDreamer in reply to stoneyrosed

What I have always been very interested in is how come some people survive and then thrive after tremendous trauma and others don’t. My husband was bombed, quite seriously injured and although took time to recover, did with no lasting emotional or obvious trauma damage living a long and happy life, now 89. Both he and his sister were victims of bombs and both recovered well. They came from a secure and happy family and have passed that on to future generations.

Having secure and happy base to thrive from is an important factor in my none expert observations.

stoneyrosed profile image
stoneyrosed in reply to CDreamer

My Father is a very laid back person and nothing seems to fluster him at all, whereas my mother is a born worrier and I feel it is something in the genetics of a person that predisposes them to stress & anxiety which leads to further health issues. Studying the mind & body reactions to stresses is a very important way to go now for scientists to study. This is been taken much more seriously by the mental health authorities in the last 20 years and rightly so.

CDreamer profile image
CDreamer in reply to stoneyrosed

Lifestyle Doctor’s will take history of family but most people are not aware of anything further back than family history beyond grandparents.

After 20 years of working in this field I witnessed what I called emotional cellular memory so I believe that genetics are a factor. I think there are 3 facets - biology - experience - personality.

stoneyrosed profile image
stoneyrosed in reply to CDreamer

Very interesting , I will do some research on this. Thanks!

Silky57 profile image

Really thought-provoking CDreamer. I too am sceptical of the ubiquitous pharma solution which is offered for every ill; often this seems to be at the drop of a hat and a tick box exercise without due regard to the holistic nature of each individual’s health. Money is, of course, at the root of the pharma industry and every drug has a side-effect. So whilst I am grateful, I am also mindful of this fact.

pusillanimous profile image

I cannot speak for the medical fraternity, but I can speak of dentistry, maybe limited to South Africa, I don't know. I was PA to a dentist who had done various post graduate courses in the USA and viewed the mouth as a holistic entity. Since at that time the only specialist register was Orthodontics and my bosses' interest was rehabilitation of the whole mouth which meant performing all periodontal procedures and and providing prosthodontics to which end we had our own laboratory within the practice. Because he did not wish to do routine fillings etc. but relied on other dentists to refer cases to him, he decided to head his notepaper 'Practice limited to periodontal prosthesis.' Well. the jealousy this provoked among fellow practitioners was unbelievable. The heading had to be removed! Registries were then opened for Periodontics and Prosthodontics, but if you were on one of those you could not do the other despite their interdependence! My boss declined being on any register, but such was his reputation , he founded a department of Oral Rehabilitation at a top SA university . Eventually after commuting between the two countries for a period and becoming very prominent in London,, he concentrated all his time on a very successful practice in London's Harley St area. Sorry about the long diatribe, but my intention is to illustrate the jealousy? and the limitations between specialist disciplines !

bassets profile image
bassets in reply to pusillanimous

Again this sounds like playground rules 🤪

Moongold7 profile image

As a fairly newly-diagnosed AF sufferer, I highly recommend the YouTube videos by Dr Sanjay Gupta of York Cardiology. I think you'll find most fears associated with heart health and conditions will be greatly alleviated and many in fact will be totally put to rest. He's a very knowledgeable UK Consultant Heart Specialist who wants to take the anxiety, stress and fear out of such heart conditions. I personally would prefer to pay him for a consult than any Cardio I've yet consulted with, who simply keep pushing out the same medications year after year, put people on statins for life etc etc etc. His YT videos are totally free and provide much help and comfort.

SingingGardener profile image
SingingGardener in reply to Moongold7

I thoroughly endorse what you say Moongold about Dr Sanjay Gupta. Since I was first diagnosed with paroxysmal AF 11 years ago I have found his videos so informative, helpful and reassuring and learnt more about AF - and in a non-patronising way- than from any of the medics I've seen. I look at them whenever I'm feeling insecure about my symptoms.

Moongold7 profile image
Moongold7 in reply to SingingGardener

Yes, it's quite amazing to me how other medics don't seem to be interested in following suit! I've encountered more and more practitioners who present not only as hardly acknowledging you as an individual patient with individual needs, but to my disgust, just a number in their appointment book to input money to their bank accounts. I personally saw one recently who allowed me, as a new patient with many questions and fearful of my AF diagnosis, just 15 minutes to see him and I was literally guided out the door right on the minute, having received no advice other than a pat on the shoulder and recommendation for testing and medications I refused to have after investigating them, as they were clearly unsuitable and warned against with the other conditions I have, such as COPD. The specialist had that history in front of him, which of course created even greater insecurity for me. I felt no safety with him at all. It shocks me that patients are being left to more or less find their own way. I realise now how blessed I was previously throughout my life to have caring doctors and specialists overall. I know from experience that Covid has altered the attitude of many doctors especially. I've read of truly unbelievable comments, attitudes and treatments posted by so many unhappy patients. I think Sanjay will be flooded with requests for help and advice for a long time!

CDreamer profile image
CDreamer in reply to Moongold7

I think most of us are aware of his videos, pleased you find them useful, for the newbie you cannot do better. The AFA also has excellent information in the form of videos, booklets and information sheets and hopefully, the in person Patient Day will return. I learned more in one afternoon attending that conference than in the 8 years of dealing with cardiologist before I knew AFA existed and found Patient Day and this forum.

MummyLuv profile image

What I really pray for is preventative technology, catching afib early where its treatment by catheter is highly successful before it takes hold. Often at that stage individuals won’t even know they have it.

There are wearable trials in the US and NHS, if 2 week plus long wearables as part of a screening program (like bowel cancer) was adopted that would change the face of af treatment 🤞

CDreamer profile image
CDreamer in reply to MummyLuv

We have that, we’ve had it for over 10 years, detection isn’t that difficult, managing and/or treating AF seems to be.

I despair at the incredibly slow pace of change and lack of general lifestyle education and psychological support, even amongst doctors. Psycho educational group support has been very successful in helping people manage conditions such as eating disorders and I suppose this forum is an online version.

MummyLuv profile image
MummyLuv in reply to CDreamer

oh really, I thought we had the ECG’s that were provided when AF was suspected, usually after someone has been to their GP or landed in A&E.

I’m not aware of a screening program where over a certain age everyone is invited to wear a stick on plaster that provides a long term trace of the heart. There is a device/plaster lasting two weeks available now but there is also one in trial that lasts a lot longer and costs about 60p to buy. This makes the tech affordable to provide as a whole of population screening.

Maybe we are just behind in Scotland and other countries have screening programs but I didn’t think so as hubby and I have now privately invested in a wearables afib detection business.

I do agree with your point though, if you are already an afib sufferer treatment paths have remained the same for many years. Let’s hope pulse field changes that 🤞🤞

MummyLuv profile image
MummyLuv in reply to MummyLuv

PS totally agree with your first post on any-drug and you are right it’s still the treatment of choice :(.

CDreamer profile image
CDreamer in reply to MummyLuv

The AFA ran a big campaign aimed at GPs for screening for irregular pulse - then NICE changed the guidelines saying AF could only be diagnosed through ECG - thankfully my then GP had been cardiac registrar and very familiar with AF. He diagnosed me with stethoscope on my pulse and getting me to beat out the rhythm I felt my heart beating to correlate. The wearables were then in development - the Zio patch was invented in 2006 and available from 2014. The insertables earlier than that. Why were they not used more? Cost. Evidently it is cheaper to have thousands of people wait in line to get an 12 lead ECG.

I had a Kardia from 2012 - I know it’s not a wearable - my EP had been part of the trial who evaluated the Kardia in UK so accepted traces from me from 2013. My GP had never seen one but when I demonstrated it - I couldn’t get it back from him and he immediately campaigned for the surgery to purchase to give out to patients - not sure that worked successfully.

I have become increasingly sceptical about our organisation of health provision, there are good people wanting to do good things and excellent health professionals working their hardest - frustrated constantly by what a poster above called Playground Rules and Cost.

MummyLuv profile image
MummyLuv in reply to CDreamer

sad state of affairs huh. 🥲 prevention has got to be better than the cure as they say.

OzRob profile image

Great post CD, hard to believe is was written so long ago. All very relevant today.

With your long term experience with AF and a similar mindset to mine I would like I would like your input to a post I just made on the forum, here is the link:-

CDreamer profile image
CDreamer in reply to OzRob

I just did.

OzJames profile image

very interesting first post, and yes it appears not much has changed.

i’m reading a book only half way through and it’s already opened my eyes and mind to the power of breathing properly. Breathe by James Nestor.

secondtry profile image

Maybe not much technically new over 10 years but this Forum including your contributions have greatly helped us all to get to better grips with the existing treatments and make the right individual decision. Judging by the regular grateful comments that keep coming, that must go down as a small advance 🤔

For me the most exciting development in the last 10 years has come from Dr John Day, York Cardiology and others who now incorporate Lifestyle changes in their run of the mill advice on treatments.

CDreamer profile image
CDreamer in reply to secondtry

100% has my vote for that nomination for Dr John Day - such a good book. And would add the late Dr Sinatra, heartmdinstitute although his son is continuing the work.

What I notice though about all those named above and many others that I follow and admire such as Dr Rupy & Dr Chatterjee, Prof Spectre in the UK is they all work independently outside of the NHS. I know several doctors who work on the lines of all of the above but tend to keep their private work quiet within the NHS for fear of consequences to their NHS career, that it so very sad.

wwatson280283 profile image

Very well said. Although I was only diagnosed with AF in 2016 with the condition worsening I agree with everything you say. Many organisations used to have departments working in silos independently of each other. Things were missed with sometimes tragic consequences. Then they realised that working together sharing knowledge was a better way to go so that nothing important was missed. Its a shame that medicine and medical practice has not realised that.

AussieHeart profile image

It may be just over a year since I joined this forum, knew little about AF and hung onto everyone’s words. It helped me work through my anger about this hideous condition! The greatest comfort I got was reading one of your posts about feeling like you were sitting on top of a railway station. For the first time the condition / symptom I’d been trying to describe to cardiologists was expressed by someone else. I agree it is disappointing that there’s no holistic approach to dx and treatment. I’ve experienced that with myriad “atypical” conditions four specialists failed to see a link when tracking my symptoms exposed an obvious link leading to AF. I find this condition gets little attention, even less understanding and often dismissed as nothing much to worry about. When symptoms first strike and the condition is not quickly dx there’s much to be concerned about! Thank you for posting to this forum for so long. I continue to learn from the great words of wisdom of many posting here. Happy anniversary!

Spangle14 profile image

Having not been on this forum at the time you first posted this, I found it a very interesting and reflective account, which really resonated with me. Thank you for re-sharing

kkatz profile image

Great post & sets me wondering.I do think that there be some movement in some areas.I think there are moves away from sticking you on drugs for your life.More procedures offered.More consideration of quality of life. But a big BUT.I feel this is down to more knowledge in patients and them knowing that quality of life is something they should be able to expect.But sadly at a GP level and medics out of the Arythmia field there is not enough knowledge.

Plenty of talk about improving this but not enough progress.

CDreamer profile image
CDreamer in reply to kkatz

completely agree

TopBiscuit profile image

It's funny you should say that....because I was interviewed a few days ago by a researcher for one of the AFib studies that were posted on here. And one of the main things I said was that I would like some kind of multi-disciplinary approach instead of the 'many specialties only addressing their little piece of the patient (ie me)!

And I'd just like to add that your contributions on here are always worth reading. You're a real asset to this forum, thank you.

(I was on this forum a while back but found it very challenging for my rather precarious mental health at the time, plus I embarrassed myself, so I left and only recently returned. I will publically address this at some point soon. But, having said all that, I really appreciated your input then and now!).


CDreamer profile image
CDreamer in reply to TopBiscuit

Good to have you back. Knowing when to withdraw is important - I’ve had to do that a few times.

FindingCaradoc profile image

I won’t add anything to the excellent comments in the thread about a holistic approach, which I wholeheartedly agree with. What I would say, in terms of improved treatments, is that Professor Gupta was waxing lyrical about pulsed field ablation (PFA) when I saw him last September (and before I had this procedure myself for early persistent AF - which so far has been a success). Describing it as revolutionary rather than evolutionary. Of course only time will tell if this is the case.

CDreamer profile image
CDreamer in reply to FindingCaradoc

I don’t know too much about PFA - as far as I can gather it is safer and more accurate than Cryo or RF but that is an advancement about the equipment used to do the same procedure in my opinion.

whats profile image

I just want to say in regard to diet, that I weighed about 200lb ( about 80KG) almost 2 years ago, and now weigh about 125 lb (50 kg). I did this by giving up sugar and processed foods and eating a lot of blueberries and apples and vegetables, basically a kidney-friendly diet, as my kidney score was bad, all this along with PAF and autoimmune disease, it just seemed like time to do it. Anyway, all these conditions are better/ less frequent. I still want to do more on the mind-body angle though, as I still have anxiety that I think makes it all worse. I wonder how common that is in AFibbers? Maybe it keeps them skinny? and scared. My ex-husband had aFib and it never seemed to worry him. His afib became permanent. He was a large guy. He had a successful ablation a few years ago, though he may have relapsed by now, he doesn't mention it, maybe doesn't notice it. He's also lost weight.

CDreamer profile image
CDreamer in reply to whats

Oh well done with the weight loss! And especially ditching the sugar and processed foods, If anything the food industry rather than the Pharmaceutical industry are to blame for so many of our ills.

Anxiety comes in many forms and it’s for me - how you perceive and manage it that matters. Almost everyone on this forum has anxiety, some people find it overwhelms them and find it very difficult to manage whilst others find something which works for them.

I started by understanding the autonomic system because that is the alarm and regulating system for the body, often known as Fight or Flight - there are 2 opposing systems - the Sympathetic System - which scans and reacts and the Para-Sympathetic System which self regulates and helps self sooth and also controls rest and digestion. The vagal nerve which you may read a lot about on this forum is a part of this system. If these two systems are out of kilter then anxiety will become chronic and people remain on ‘high alert’ - which what AF tends to trigger. I found, through Mindfulness, I could become the observer of my anxiety symptoms which often preceded an AF episode. Once I did that I knew that these are natural sensations warning me of an impending AF episode so I could prepare. Had I perceived these sensations - an adrenaline rush, sense of impending danger, a shakiness throughout my body, breathlessness and sometimes feeling ectopics as something unknown, unusual and alien I would (and indeed had been in the past) in full blown panic mode - ensuring the AF episode.

A colleague of mine wrote one of the first psychological pamphlets on anxiety and they described visualised anxiety like this:- imagine you have a glass of water - the glass represents your body and the water the anxiety - if you take drinks from the glass (relax and rest and recuperation) the glass remains half, three quarters full. If you don’t take drinks and the glass continues to be refilled - it overflows.

Anxiety is a set of symptoms - people’s symptoms vary - start by writing yours down and recognising the physical symptoms. Then start noting down your thoughts. If the body is an accelerator pedal the mind is a foot that presses down on the pedal. So you need to understand both the sensations in your body and how you mind immediately goes to panic thoughts and start working on both in tandem.

Hope some of that makes sense. Take care.

whats profile image

Thanks, that's helpful. I currently have a cold and my ears are stopped up so I can hear my heartbeat which is currently afib (I don't need to be constantly reminded, thank-you ears) and found it impossible to sleep last night. So I tried not having my usual slightly stressed attitude, just blowing that thing and all its little traces away. I was quite relaxed though maybe the novelty of a different attitude kept me from actual sleep. Yawn.

rubina786 profile image

The cardiologist mentioned below D Sanjay Gupta of York. (There are two, the one from York is an absolute blessing) he has changed my life! He make total sense. The amount of medication I was prescribed after my heart attack last September made me very sick, anemic, almost bed ridden with massive inflammation oedema in left knee, ankle and other issues. I thought my liver and kidney were dying and heart never felt right, scary.I now research every single thing myself causes, meds, supplements food, non conventional treatment etc etc.

Am glad to say am much better, many ailments gone, liver good, BP normal and bloodworks are better! Some natural and inexpensive treatments have been "hidden" for financial gain for sure.

This is just one example. There are many more!

Am still on heart medications such as Isosorbide Mononitrate, Clopidogrel, Asprin, Irbesatan and 5mg of preds, no pain killers or DMARDS.

Was able to stop 4, lansoprazole, bisoprolol, statin and furosemide in 2 months! Not recommended ofcourse but I was prepared to take the risk and wean myself off after trial and error as the side effects were worse.

I then decided to go for a couple of "non phama" treatment for my RA, (controversial so cannot mention here) and they appear to be working. Been about a month. Meant to get to root cause of RA and "cure" in 3 months! Fingers crossed.

Have to take the new treatments slowly. Feel better every day. Will know in 2 to 3 months. So far left leg pain and inflammation gone down to a 2 or 3 in the mornings (from about 8 or 9). Heart and BP pretty stable. Active again. Intend to have an online consultation with Dr Sanjay Gupta hopefully too.

I believe most people should look at causes themselves instead of relying on doctors and meds, unless its life threatening, then more meds to hide their side affects...and the cycle goes on. Our bodies are made to heal. We just have to figure out how to listen to it, give it what it needs and stay away from all the contamination "infiltrating" our water, air, food, drugs etc.

CDreamer profile image
CDreamer in reply to rubina786

You are so right. You may be interested in a video I posted yesterday about Why Woo Woo Works - Dr David Hamilton in conversation with Dr Rupy especially the bit about Placebo affect and reducing meds. I took HBOT Hyperbaric Oxygen Treatment when first diagnosed Myasthenia which all the doctors told me they knew nothing about, one thought it very dangerous. It wasn’t an amazing cure for either AF or Mg but it got my O2 sats up beyond 90 where they have thankfully stayed and helped my body to heal. My latest antibody count was down to 9 from being well in the 100’s. My friend’s daughter is currently having same treatment for long COVID and is rapidly improving. The science of how and why has long been known - but the none invasive treatment is not used in the UK except in cases of burns. In US it is used a lot as insurance companies love it as it’s much nless expensive than drugs long term.

Beater profile image

Beta blockers for 11 months and a cardiologist who doesn't return phone calls or care. Ruined my life. I'm still bedridden almost 2 after AVR and cabgx1.

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