A Precise - a list of things that help - For Newbies.

[CDreamer]

Hi All - many of you will know - and have contributed to - a prep I am doing for a talk to a local AF Group. I thought it might be useful to post a precise of things that everyone on here has found useful to know when first diagnosed - which we all know is a very scary time!

Here is my list - not comprehensive and if anyone want to add - please comment.

What helped:- from Surviving to Thriving

Taking Control..........

Strategies for easing anxiety

Acceptance and adjustment to life changes

Lifestyle changes

Exercise - knowing the right amount and the right pace.

Identifying triggers for AF - alcohol & caffeine

Taking supplements - with help of a professional. (Check with your pharmacist for contraindications.)

Vagal AF - what is it and how can you tell and what can you do about improving Vagal Tone.

Nutrition - much research coming out regarding micro-nutrients.

Treating underlying conditions

Setting realistic goals

Being Thankful (part of Mindfulness practice) for what is

Breathing exercises.

Just knowing that AF is not immediately life threatening - even though it can feel like it sometimes!

Knowledge - brought empowerment - understanding the condition, the medications and what they do, won't do etc.

Having treatment options clearly explained & having a treatment plan.

Having a Faith.

[Luludean]

Wow where are you based? Sounds very positive!

I live in Cambridge is there a group like this near here?

[CDreamer in reply to Luludean]

Ask at your local hospital or look on the AFA website, or do what I did and asked my EP if he would be medical consultant to help me start one. One of the Arrythmia nurses has been the driving force and does all the admin and we meet just to talk through meetings which are mainly for newly diagnosed - this meeting will be the first second meeting.

[glosfrog]

hi. great list. I think the greatest help for a newly diagnosed bod would be if the medical profession at least told us about the AF assn and this Forum. I have mentioned it to my GP in the hope that future patients are told. the help both sensible and guidance on this website is often invaluable

thanks everyone

[CDreamer in reply to glosfrog]

I've added signposting to AFA & HU forum. Thanks - what would I do without you lot to put me straight!

[secondtry]

Great list, I would say 'upgrading oral hygiene' (dentist/hygienist) is probably important enough to join your list as a separate item. Maybe somebody can record your talk on a mobile and post it here, I am sure there will be lots of interest.

[CDreamer in reply to secondtry]

Thanks, I have just added oral hygiene. Recording presents issues because of it being in a hospital setting - and everyone in the room has to agree. Something I am investigated but there is a lot of red tape around.

[Pam296]

I think this will be very helpful to newbies and I wish there had been something like this available when I was first diagnosed.

[cuore]

Diagnosing AF, specifically medical tools such as ECG and echocardiogram

[WendyWu20]

It will be a challenge to condense a whole book-sized lot of info into one talk! Will you be able to offer a handout providing links so that people can do more detailed research afterwards?

I know it doesn't apply to everyone, but the link with being overweight seems to be becoming a trend now (it's the only thing that's actually motivated me to lose weight).

And the reference to being thankful is so important... after making many lifestyle changes (and generally feeling better for it) my AF just gets worse - so daily meditation to keep me in a genuinely positive frame of mind is ESSENTIAL!

I find the teachings of Eckhart Tolle (readily available in his books or Youtube videos) are brilliant. It sounds a bit cheesy/new-agey, but I actually thank my heart when it is in AF, as a useful sign that I need to explore unconscious negative emotions, and work on healing them.

Well done you - I'm sure you'll give a brilliant talk that everyone will find so helpful :o)

[CDreamer in reply to WendyWu20]

Thanks for your reply - it is just an introduction - I hope to focus on introducing lateral thinking and signposting. Perhaps, if well received, we will do some more in depth work at future meetings - it will very much depend upon interest.

Thanks for the links which I will check out, I have quite a lot of stuff and will only recommend if I have tried them myself and like the presentation - for instance I recently downloaded a Mindfulness App called 'Calm - Meditation' which I really like and yes I will provide handouts for people to pick up - if they are interested.

A site you may find very useful is HeartMath - lots of free stuff but I invested in their bio-feedback app when I first got into AF and looking at things that helped back in 2014. It is science based and absolutely fascintating work. Very successfully used in schools for countring exam stress,

Oh - and I just added Distraction when in AF episode - personally I found Audiobooks to be very good.

[Joynjoy]

I don't know if it's relevant to what you want to produce but I'd appreciate a list of abbreviations, explainations of, so that I can understand what you "older hands" are talking about!

[CDreamer in reply to Joynjoy]

Very Useful comment - thanks. Somewhere there is a 'pinned' post explaining those which I will search out - and post link if I find it!

[Sunshine89 in reply to Joynjoy]

I would also find a list of abbreviation explanations very useful. Good luck with your presentation, I'm sure people will appreciate.

[KazDD in reply to Joynjoy]

Definitely agree with this one. Abbreviations and acronyms can mean different things to different people.

I have learnt that here EP refers to an electro-cardiologist, where as I work in a school, to me EP refers to an Educational Psychologist, something quite different!

[irene75359]

That is a really comprehensive list and will surely be helpful to newly diagnosed sufferers. All I can add is that, personally, when I was first diagnosed, I thought I had been given a death sentence. I visited all the wrong sites for information, wrote to all my sisters about this terrible condition I had and brought it up about once an hour with my ever-patient husband. I watched life go on around me and was screaming inside. I don't know if my reaction was extreme, but I am not a nervy overly-anxious person and I look back on that period (about six months) with horror. So for me - Reassurance - although I am sure you have included that in your earlier points!

[Hidden]

Hi CDreamer,

I'm going to ask what may be impossible to include in your talk, but as you are talking about what newbies might need to know, I thought I'd add my pennyworth:

I still don't know how to

1. name/identify the odd sensations I get which seem to be associated with my heart, or

2. recognise/interpret what is meant by the various 'technical' terms used by others - for example ectopic beats, superventricular/ventricular or atrial beats. I can get definitions of these but rarely any description of what they actually feel like. (Kate444 recently asked about the same thing). I understand that ectopic beats are not the same as AF - so what does AF feel like? This is pretty basic, but I have to confess that I'm now unsure! When I was first diagnosed, I just assumed that all the fast heartbeats, jumpy, loud, irregular heart activity, weird sensations in chest, feeling faint occasionally, etc., were AF.

Many thanks!

PatAF

[CDreamer in reply to Hidden]

Hi PatAf - it’s a good question but the reality is that it feels very different for everyone, and many, many people don’t even have any sensation at all.

I always described my AF as being Popeye every time he saw Olive - but you may be too young to remember that, LOl.

AF is an irregular, irregularity - my rhythm in AF feeks as though it speeds up and then slows down, thumps and then goes very gently. In NSR I am not aware of my heart beat nowadays.

I don’t know if you have seen the Arrythmia Dance on YouTube - I’ll try and find it for you as this is a good attempt of explaining what the heart does and so may feel like. But the reality is that only an ECG will interpret what is going on, which is why so many of us tend to use Kardia ECG and take our own.

I’m sorry the link video I was thinking of - which is amusing as well as informative - is no longer available - but you may find this useful? My GP got me to knock out the rhythm on a desk when I first sought diagnosis 10 years ago,

youtu.be/8sJIjPbzHro(Not working as expected?)

[Hidden in reply to CDreamer]

Thank you so much for your helpful reply. (No indeed, I can remember Popeye as I'm 76). I watched the wonderful Dr. Gupta, and his video was really spot on about identifying beats and sensations - what a sweetie he is! The problem is, he's so good that I've just gone on watching loads of them, and I'm well behind what I'm supposed to be doing. Never mind - all helpful.

Keep well.

Pat x

[queeniebusybee88]

hi CDreamer, this would be a great talk to attend, i live in liverpool, is there anything like this near my area at all? i know other AF sufferers who would also benifit from seeking advice like this.

Thanks 😃

[CDreamer in reply to queeniebusybee88]

I don’t know, although it is my home town. Look on the AFA website for local support groups otherwise what about starting one?

If you want a medical advice one you need to enroll a consultant EP as medical lead and go from there - I suggested it to my EP, he got his Arrythmia nurse to arrange a meeting and hey presto. We have only had 2 meetings, mainly for newbies and this will be a second meeting.

There are also a few informal Nosh & Natter groups around the country, both Ian and Bob arrange some, but they are in the south.

Put a post up and see the reaction?

[Alessa69]

This SO helpful ! Thank you 💖