is there any positive news to uplift us - Atrial Fibrillati...

Atrial Fibrillation Support

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is there any positive news to uplift us

djroute66 profile image
16 Replies

Hi all

i know i am a relative newbee on this site. But I was wondering is there anyone on here who's condition hasn’t got worse over time or anyone who feels there as been improvement with time. as i have mention before my brother was brought back to NSR through shocking the heart he was then placed on wafarin for several months and as be drug free and symptoms free for over six years, i think we all need some good hope stories as all negative news just makes it harder to plan for the future for me at least.

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djroute66 profile image
djroute66
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16 Replies
SRMGrandma profile image
SRMGrandmaVolunteer

Hi dj, I see by your profile you are a bit of a worrier. That is my natural tendency too, but it is not helpful so I try to focus on the positive and work on the glass being half full. While my AF is more frequent than it was a decade ago, it is much improved from where I was 2 years ago with fewer episodes of shorter duration. I think there are improvements coming quickly in the treatment of AF so that is great too. I just posted a link on my blog post about promising new treatment trials here in the U.S. My best advice to you is to be as positive as you can, exercise and eat sensibly, sleep well, and look for the joy! Have a great day!

Vivante profile image
Vivante in reply to SRMGrandma

I It would be good to get new treatments for AF.I have been taking warfarin since 2004 but recently found out warfarin puts you at risk of osteoporosis. I had a dexa scan in 2006, I had osteopenia, I had another dexa scan in May, I have a copy of that and it clearly states an increased risk of fracture to the lumber vertebra. One more obstacle to cross, I think I will walk around the obstacle rather than climb over. (More ladylike). Exercise is good, I must remember not to bend over to tie up my shoelaces, thanks to the National osteoporosis foundation. There is so much joy to be found, just look around, I stand at the kitchen sink and watch the doves come down for the seed we put for them and I watch the fish making ripples on the water, we have a pond in the garden. I have the odd rumble from the AF, I have learned to ignore that, to some extent. I also have the tendency to worry, it's frustrating. I then think about the others who are worse than I.

I get my papers out and plan the programme for next week, to encourage my class members to work in a way that is right for them. We do have some laughter, perhaps it is my accent.

Take great care of yourself.

BobD profile image
BobDVolunteer

For what it is worth I had three ablations up to 2008 and have been AF free for fove years now. Yes I do still have arrhythmias (Ectopics and occasional tachycardia) but not the AF Is that good enough?

Like Grandma says, live every day to the uttermost . Trust me there are much worse things than AF as I found out.

BobD

SRMGrandma profile image
SRMGrandmaVolunteer

BobD, you make such a good point. In the grand scheme of things AF is absolutely not the worst thing in the world to have. Everybody has something!

djroute66 profile image
djroute66

Thank you grandma.feel better already x I am glad Bobd that you are af free. It's been said on here so many times that AF effects people in different ways. we all don't share the same symptoms . That also goes for how we all deal with things that happen in our life.what is water off a duck back to some,is a total tragedy to others. Yes we are not all the same.since the age of ten i have suffered with psoriasis head to toe and in those days there was no one to turn to, just told to get on with it and yes i learned to get on with life although it caused me great anxiety 10 years ago I developed crohns again I have learned to get on with life and now I have to deal with af and again I will learn to get on with life. It may sound silly to some but What as helped me is encouraging words from others . Having had to deal with so many things on my own It is not my wish to antagonise anyone with this question but surely giving some upliftment Is just as important as the drugs to me anyway .i think most people with anxiety would love to share your attitude Bob if we could turn off the anxiety believe me we would... Keep well

elmbury profile image
elmbury

I went into permanent AF in early 2012 - and my heart has learned to live with it. Originally my heart tended to flutter, but now it has got stronger. So much so that I can now cycle faster than I have ever done in the last 20 years (until I get to the hills, but I am getting old). Just learn to live with it - AF is not cancer or dementia, and the chances are you could still live with a reasonable quality of life for many years to come. I used AF to address other issues in my life by losing some weight - try and make a positive pout of a negative.

djroute66 profile image
djroute66

Well done elmbury.now that's positive news . I just bought a new road bike and intend to keep cycling as long as I can. It's business as usual for us. Thanks for sharing your story

Kernowman profile image
Kernowman

I'm glad to see some positive news. I'm asymptomatic and try and live as much a normal life as possible. I have considered ablation, but like elmbury, I have tried to make something positive out of the situation - lost 4 stone in wait, able to go out jogging 3 or 4 times a week, cut back on caffeine as well as alcohol (still the odd beer or glass of wine) As yet, I will put ablation on the back burner.

I'm using my PAF as a really good incentive to lose weight and get into a healthier lifestyle, which I hope will also help to protect me against other problems going forward. I don't like the idea of the attacks getting worse or more frequent as time goes on, but I find the people on this site and the site itself very encouraging, with news of new treatments and new approaches. So there is some good out of the bad news!

Vdl1 profile image
Vdl1

Had af for 8 years ..in early 50 s when started...two ablations put me into perm af..since then ...apart from meds...I have totally ignored it...I live life to the full..sometimes too much...and think you should just get on with it...my best friend died if cancer at 50 I intend to enjoy everyday of my life in memory of her....forget af more likely you will die of something else....

mzoren profile image
mzoren

I've had paroxysmal AFib for about 5 years. My type occurs when at rest, mostly at night. I only started keeping a log at the end of 2011. I had 13 episodes from Jan - Jun 2012. In July 2012 I started using a CPAP machine for my sleep apnea and started taking magnesium, potassium and taurine. In the year since then I've only had 4 episodes and my almost daily ear pounding palpitations (in bed) have disappeared. I'm not sure exactly which of those changes helped but I'm continuing them all.

Good Luck, Mitch

SRMGrandma profile image
SRMGrandmaVolunteer

I love hearing all these positive thoughts! Thanks everyone!

djroute66 profile image
djroute66

Thank you all for taking the time And replying to my question.yes there are worse things than af but that should never stop us from lighting that spark of hope and encouragement within us all. I for one feel better in myself after reading these answers...sury this is a good thing

Ps belated happy 4 of July grandma

Keep well and positive

DJ

slothbristol profile image
slothbristol

OK, my own good news story - after several years of investigating an intermittent arrhythmia ("Well, it might be AF"), I eventually had a mini-stroke (very minor) which then led to more serious investigation and a diagnosis of Af (atrial fluttter) which seemed to be evident all the time although I was relatively symptom-free apart from tiredness and finding it hard to exercise. I put this partly down to the medication they put me on after the mini-stroke (beta-blockers, calcium channel blockers) rather than the Af itself. Anyway, I had a cardioversion about a year ago which worked for a little while but then I reverted into Af. I had a catheter ablation about 9 months ago which seems to have returned me to NSR up to now. I've also dropped some of the medication (still got to keep going with Warfarin). So good news from me. I know flutter isn't generally as bad as fibrillation anyway so I feel fortunate but it still affects lifestyle and general feelings of well-being and it's only now that I feel better that I can see that in perspective.

Now, if only I could get off the Warfarin and have some grapefruit!

sandy8 profile image
sandy8

My story is I was diagnosed with AF three years ago. Three months earlier my wife died and also diagnosed with diabetus. The cardiologist put me on bisoprolol 10mg and digoxin 250mcg.had a bad time adjusting to Af but over time things settled down with diet and excercise,.diabetus is under control and also my Af now OK. Also on warfarin and being monitored regularly. Have recently requested that my bisoprolol be reduced to 7.5mg as my fibrilation seem better and rate control OK. It has been nice to get out again in the evening without having to worry about Af attacks my age is 72year.

Japaholic profile image
Japaholic

I really want to try acupuncture along side the medication I am on. I firmly believe there is an under lying cause to my condition not being addressed by western medicine. I will, of course, discuss this with my cardiologist first.

Had a bad run with bisoprolol and then flecainide which put me in hospital. But, not on Soltalol and things seem to be under control thankfully. Still having episodes but less frequent and less severe.

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