How did you find this Forum? - Atrial Fibrillati...

Atrial Fibrillation Support

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How did you find this Forum?

BobD profile image
BobDVolunteer
51 Replies

I have been wondering for some time how people come across this forum. I of course came to it from AF Association which I have been a member of since inception around 2007. We used to use a Yahoo forum which was moderated by AF-A but this became unwieldy and unworkable so Healthunlocked replaced it.

It seems to me that many people come here having not known about AF Association and are ignorant of the valuable information available from that organisation via the many fact sheets and services.

Just thought it would be interesting to find out that's all.

Bob

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BobD profile image
BobD
Volunteer
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51 Replies
jeanjeannie50 profile image
jeanjeannie50

Hi Bob - I discovered this site by doing a search online for atrial fibrillation. I have to say it was many years after my diagnosis. Just had no idea there was such an informative and supportive forum. I believe everyone with AF needs to be made aware that it exists.

Jean

wendicarro profile image
wendicarro

Hi Bob,

I came across this forum when I searched for AF and wish I had done this ages ago, I don't think it is the fact that people are ignorant of the information available as in my case we just don't always know the right place to look.

Reading information on this subject is great but even better when you can exchange and talk about worrying symptoms to a fellow sufferer.

Wendi

Jay10 profile image
Jay10

Hi Bob, I came to it from the AFA website having been a member on the Yahoo group first.

Jackie

jan-ran profile image
jan-ran in reply toJay10

Me too. JanR

Hennerton profile image
Hennerton

I am new here and joined via my membership of Thyroid UK, also one of HU's associations. I have found it very informative and now know if I need info, it is all here somewhere.

My only wish is that a little more emphasis could be put on trying to heal AFIb with more natural methods, rather than just batter it with the latest drugs. The side effects of these are potentially so great that I would like to do without them. I have read of Hawthorn berry being used all across Europe but it barely gets a mention here.

Has anyone had any success with Hawthorn, or any other alternative means? If so I should love to hear about it and any other useful tips, such as homeopathy, acupuncture etc.

Please do not think I am being negative about the site and I know I may need it more and more as time goes on. It is brilliant to have somewhere to ask questions and receive support. Thank you!

Finvola profile image
Finvola

I googled atrial fibrillation as I had been given no information about it when diagnosed. That brought up the AF association which seemed to be the best google result and I noticed some weeks later that there was a Forum linked to it.

Hi Bob, I think I just did an internet search for atrial fibrillation forum. I wanted to talk to other people with problems because I was having a bad time and getting nowhere.

Very glad I did. Advice from you and others on here pointed me in the right direction.

Koll

Tyson4ever profile image
Tyson4ever

Bob, I discovered the forum having joined the AF association, glad I did too.

Jo

Deeferdi profile image
Deeferdi

I found it by Googling Atrial Fibrillation but at my first EP appointment he told me about it, I told him I'd already found it.

Dodie117 profile image
Dodie117 in reply toDeeferdi

Ditto!! Whilst waiting to see cardiologist I googled "irregular heart beats". AF came up and as I researched this site came up. My ep also suggested I look at it.

CTG99 profile image
CTG99

A friend with AF passed on the AFA newsletter to me, so I went to the AFA website and found the forum from there.

Caroline

meadfoot profile image
meadfoot

I found it by looking at all things AF on google and joined the AFA. No one told me about it ie medics etc. In fact I found out about our own AF local group by googling again, e mailing them and asking if I could attend the next meeting.

I cant understand why hospitals dont tell patients about it as when I mentioned AFA they were aware of it.

souljacs4 profile image
souljacs4

Good old Google. just want to say what a blessing this site has been to me it really has kept me sane.

creschendo profile image
creschendo

Hi Bob

As a response from the antipodean colony - I came in via the forum link from atrialfibrillation-au.org, which I guess is run by the Aussie branch of your AFA.

Like others, I am extremely glad I did find this forum, I would be confused and lost without it.

Best regards

Ric

BobD profile image
BobDVolunteer in reply tocreschendo

Hi Ric, yes AF-A Aus is a spin off from AF Association which was formed by our CEO Trudie Lobhan who currently travels the globe setting up groups. Amazing how much one person can do!

nigelfarruca profile image
nigelfarruca

Googled AF after 15 years of AF.

Jason1971 profile image
Jason1971

A search on the internet did it for me. Found the AF-A Website and used the Yahoo forum initially. I must say it's been a God send. I still don't fully understand my AF, but thanks to this site I'm learning all the time.

Mrspat profile image
Mrspat

Can't remember but it was either via health unlocked generally as I was interested in another forum or else via a site for people with adult congenital heart disease.

Swale profile image
Swale

I found this site through Yahoo. Once I had been told I needed to have an ablation I searched for any information I could find. Luckily I found this site and found it very informative.

Scorer profile image
Scorer

Hello Bob,

My EP at Papworth recommended this forum. So glad he did as it has been really useful.

Best wishes to all. Pam

davegm profile image
davegm

As with a lot of others here I googled in atrial fibrillation forum and this site came up a well as a few others.

This was after my ablation when I felt in need of the experiences of others to see if my recovery appeared to be on the right track.

Well done to you all, most helpful

BobD profile image
BobDVolunteer

click on the down arrow on the right of you reply bar.

Wightbaby profile image
Wightbaby

It was just "luck" when i was doing a bit of research......took me a year to come across for some reason though and i am very proactive on the internet....I would like to start a sort of campaign where this info is given to you when you are diagnosed....for me I was told "AF....its an irregular heartbeat".........then left to get on with it!!

Not funny!!

Barry24 profile image
Barry24

Hi Bob,

Hope you are well. I got there by Google.

Kind Regards

Barry

dedeottie profile image
dedeottie

I stumbled upon the forum while I was trying to find out about A.F. but then when I went to see an E.P. finally, he recommended the A.F.A. website and the link to the forum was there.x

Craggy profile image
Craggy

I was told about it by someone I know who also has A/F.

Funny thing is I didn't discover that she had A/F until I told her about my condition. I also discovered that a couple of other friends and two of my nearby neighbours suffer from A/F! It appears to be a relatively common problem.

This forum is a great asset and I read it most days.

Dave1961 profile image
Dave1961

I've never really been one for forums and had recently joined a gardening forum. From there I wondered if there were one for After an attack and voila here I am :)

Kaiser78 profile image
Kaiser78

Through general searching on AF on internet brother Bob

Japaholic profile image
Japaholic

Just from a web search, looking for information and support.

wpw62 profile image
wpw62

Googled for info on atrial fibrillation, found the AFA and then this forum through their website. It has been all been very supportive

greengranny profile image
greengranny

The day after husband was rushed to hospital with flashing lights and sirens blaring I googled AF, then found the forum. Marvellous! I feel potetntially a life saver as we were told absolutely nothing in hospital and were desperately worried.

Can't thank Bob and others enough.

Why can't hospitals have a leaflet or something similar to offer patients? Has the AFA ever considered offering hospitals something like that?

BobD profile image
BobDVolunteer in reply togreengranny

many times!

Dodie117 profile image
Dodie117 in reply togreengranny

My hospital (St Thomas' london) gave me afa leaflet. I tried getting my gp to put one up in waiting room and they said they only put up NHS leaflets!

Thomps95 profile image
Thomps95

web search

Therealsue profile image
Therealsue

Hi Bob - memory is a bit hazy, but I think I found it via AFA on twitter.

porridgequeen profile image
porridgequeen

I was told about the AFA site by my cardiologist 18 months after my diagnosis, he told me I would find the full chads test to show that I did have to start on warfarin. I found the forum as well. What a wonderful find that has proved to be.

Thank you Bob and all.

Buffafly profile image
Buffafly

Googled AF and HealthUnlocked was one of the results.

Ang3lc4ts profile image
Ang3lc4ts

I was first diagnosed with AF in 2002, prescribed Aspirin and told to not worry about it, it won't kill you!! So for ten years I had several episodes until 2012 when I had a TIA! Then put on Warfarin by Cardiologist together with Flecainide. AF got worse so by the end of 2013 I eventually Googled AF, found this Forum, took note of all the information, presented my Doctor with it and from then on I have had wonderful treatment, all thanks to everyone on here. Since having a Pacemaker fitted in 2014, then an AV Node ablation 2nd April this year, I have been AF free, how good is that! 😀.

Looks like a lot of us have Google to thank!

Hope you all have a calm Bank Holiday, Angel blessings to you all

Di

Hi Bob;

I came to the forum via the AF Association. It's such a valuable resource. Where else can you discuss exercising with AF, or lung inflammation caused by dronedarone? I suspect there are a few people who exercise who are in denial if they have exercise induced PAF - that was me - and don't have a good source of information. How about articles in Running and Cycling Health & Fitness with a link to this forum?

There was a mention of Trudie Lobban. I was in a discussion group this month who were discussing AF related stroke, and she was on the speaker phone providing input. She does indeed get around!

pennytupence profile image
pennytupence

Hi Bob I just wanted to find a support group so I googled it and got lucky☺

cbsrbpm profile image
cbsrbpm

I found it by searching Google for Atrial Fibrillation forums.

B

sapphy profile image
sapphy

I googled AF to find information as I had been given nothing at the hospital. The day I found it changed things for me, I knew others were going through the same and everybody sharing their experiences etc gave me information and the courage to speak up for what I needed at the hospital.

I joined the old Yahoo forum which of course led to this one. I had not heard of the AFA until I read an article in the Daily Mail April 2009 featuring lovely Kirsten Millinson and her experience of obtaining diagnosis and treatment for her AF. I believe that this article alone prompted hundreds, if not thousands of enquiries to the AFA, of which I was one. There I was, having suffered paroxysmal/persistent AF since 1992/3 and had been unable to get any info or guidance before this time. I have since gone on to have 3 catheter ablations but still getting fast AF at times. Sandra

BobD profile image
BobDVolunteer in reply to

AH my lovely twin KIrsten. We had out ablations the same day.

B

farmerwalt profile image
farmerwalt

Hi Bob,

Like you, I found it via AFA

Walter.

Hi Bob,

Following a recommendation from my son, I assumed that there would be such an Association so googled it. Found this very helpful site and joined the excellent forum, which helped me to accept my own situation much more calmly.

Thank you.

Tony

Wightbaby profile image
Wightbaby

Well, there you go, Bob, looks like a lot of us only found you by accident, when we were trying to find out more about AF......!!

Which supports my point about being as good as left to your own devices after diagnosis : (

Bryonny profile image
Bryonny

Seder Bob I came across this site by accident. I was looking on line for support for my mum who has polymyalgia and came across Health unlocked and the AF forum.

Fussyface profile image
Fussyface

googled z

beardy_chris profile image
beardy_chris

I was looking for help with giving up smoking just after I got diagnosed with AF. I found the Quit Support community and found the AF community at the same time - both have been a great help!

dgex2010 profile image
dgex2010

Morning Bob, better late than never eh. I found this site when I Googled Atrial Fibrillation. I only learnt that I had AF following a brief conversation with my GP on the phone. This followed the usual hospital tests. I didn`t have a clue what it was so went straight to my friend Google and there it was - this site. Where would we all be without it!

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