Advice please !: Hi all, I was... - Atrial Fibrillati...

Atrial Fibrillation Support

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Advice please !

lingooz profile image
19 Replies

Hi all,

I was diagnosed PAF march after being blue lighted to hospital with heart rate of 184 per min , was glad they recorded it there as been tryingto convince gp for months that

Something was wrong but they never caught it , what am really needing advice for is I have had no more v fast episides but last few weeks more eptopics and box if frogs feeling ( learned that amusing way of putting it on here ) :-) is this AF as thought AF was when your heart raced ( been waiting foro months for 2nd cardio appointment to ask this , so maybe you lovely helpful peeps in here can help me , also feel so pooped , used to be able

TO do housework for couple , now about ten mins . Just on warfarin and lucky got in rang quick down ti 6wkly had bisop but made me weak as kitten now pill Iin pocket metoprolol , SORRY so long , good wishes to all Lynn x

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lingooz profile image
lingooz
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19 Replies

My AF felt like a rabbit trying to jump out of my chest when it was bad. When minor, it could be like a tickling or small twitching muscle over on the left side of my chest/under left armpit. My heart didn't have to go fast at all to get these feelings.

Koll

______

MarkS profile image
MarkS

Hi Lynn,

My AF was only once at a very high rate - around 180 bpm - and that was just after my ablation. All the rest of the time (thousands of episodes) my heart rate was around 70-100 but very irregular. I'd feel my pulse andI might get 2 regular pulses followed by a pause then a strong pulse followed rapidly by another, etc. There was no pattern at all to it - it was totally random. You can feel the more powerful beats as that "frog jumping" feeling.

So it sounds as though you have standard AF. When your heart raced like it did in March it sounds as though you had some tachycardia (very fast hear rate) mixed in as well, which quite a few people do with AF. AF's a bit like that - all over the place really!

Mark

bebe7637 profile image
bebe7637 in reply to MarkS

Thanks Mark for that. You know exactly how I'm feeling right now and finding it very hard to cope with. The Doc at A and E told me to "just treat it as a nuisance " and get on with life. That's very hard to do when you are so frightened and feeling rotten.

It's always great to hear from someone like you.

Many thanks and good luck.

BEBE.

BobD profile image
BobDVolunteer in reply to bebe7637

That doctor is so out of date and should be censured for remarks like that. I suggest you down load the CAREAF pack from that eponimous website, show it to your GP and demand that he follow it.

Bob

bebe7637 profile image
bebe7637 in reply to BobD

Thank you Bob. Will do. I really feel as though I'm on my own with regard to AF.

My GP is great and I see him Tuesday.

The " treat it as a nuisance " remark came from A and E.

BEBE.

Rellim296 profile image
Rellim296 in reply to bebe7637

You aren't on your own at all, bebe, because you have lots of support here.

It might be an idea for anyone with AF to have a real session with their GP and get him/her to see not just the physical effects of AF but also the way it is affecting the enjoyment of life. Get referred on to someone who will really get a grip and improve things with suitable medication or whatever.

If you can get that right, your confidence to manage AF effectively (and find it less frightening or debilitating) will enable you to do so much more. A year ago I would not have even considered going off on my own - I felt AF was totally in control and I was rooted to the spot. I've now got the reins back and in the past month have had two trips away (one abroad) travelling solo. I've really enjoyed getting away.

bebe7637 profile image
bebe7637 in reply to Rellim296

Thank you Relim. I'm so pleased that you are coping so well. Im so anxious about it that it seems to have taken me over , mentally.

We, usually spend a couple. Of months in Saudi in winter with our son , but I'm so worried about it for this coming year.

I am defiantly going to ask my Doctor to refer me to a specialist.

Thank you for your support. You are all so very kind.

Good health. Bebe.

Rellim296 profile image
Rellim296 in reply to bebe7637

Well, I was all set not to go away last weekend, but I really didn't want to be defeated by AF, so I went and am glad I did so. It is very easy to feel it's in control, but it doesn't have to rule one's life. The little triumphs really build confidence, so see if you can perhaps gain some buoyancy.

franksavage profile image
franksavage in reply to BobD

ive just ordered that Bob thanks mate!!

bebe7637 profile image
bebe7637

Hi Lynn

I was diagnosed with PAF 18 months ago and put on Rivaroxaban and Bisopropol. For 3 months I have been clear and then 12 days ago , wham , another episode which is still persisting. Apart from the AF misery , this pulls me really down and I struggle to cope with it all. A and E doubled my dose of Bisop .and this has done nothing for me except make feel ill. Aching legs , just feeling poorly.

I see GP on Tuesday and going to ask to be taken off Bisop. and also ask if it's possible to see someone who specialises in AF. One DR actually said that I probably knew more about AF than she did !!

I don't expect Doctors to know everything , but I find this quite worrying.

This is a great site and usually lots if people around to give a virtual hug.

Take care , good luck and let's hope we all feel better.

BEBE.

in reply to bebe7637

Hi, I would pay privately to see a cardiologist asap, well worth it if you find a good one.

Hi Lyn, when I get PAF pulse is mainly around 70 only.

iris1205 profile image
iris1205

Oh yes... we all react differently, but that first appt or admission to the hospital where you confirm you are not insane.... we are all so grateful for the confirmation, then begins the necessary task of finding out what works for you. Get in to see an EP as soon as possible, I wasted 4 years.

You are in good company here, keep posting until you get the relief you deserve!

When I go into AF my pulse is around 170, we're all different... The key difference between tachycardia and AF is that AF is irregular (your heart bumps and bangs around rather than staying in a smooth rhythm). I think that box of frogs feeling is very common! If you can get to see a specialist EP, go for it, they would certainly fill you in on the condition and assess you properly. Have you had any tests done?

Lis

lingooz profile image
lingooz in reply to

Thanks lis yes holter in begining but only showed couple eptopics then , its worse now !!! Is why I need that second cardio appointment which sounds like they so busy will be months !! And echo results showed no other probs

jennydog profile image
jennydog

Hi Lynn, prior to my ablation I had what my Cardiologist described as "classic AF." I have never had a rate problem. My hr is about 65 and when fibrillating it's about 85.

My EP thought that I was in AF more than I realised and a 7 day monitor proved this to be true. It showed a 36 hr episode that I was not aware of. And anyway, how do you know what's happening whilst you're asleep?

My biggest problem is describing how AF makes me feel. No palpitations and no ectopics. Saying that I cannot function and feel bloody awful isn't helpful to the medics!

Best wishes

Moonstone56 profile image
Moonstone56

What wonderful descriptions of AF. Box of frogs, rabbit in your chest. ..Yes that's just it. And we arnt imagining it either. Since being on propranolol I haven't recorded a fast beat above 100. It's usually 48-80. But that frog is there. I have some times when I think my heart has stopped. ..No thumping. .But I'm breathing. .Maybe that's the normal pattern that seems so long ago. It's amazing how we are different but similar. This site is so useful.

Robyncarmen profile image
Robyncarmen

There is a way to see if you have AF with an ECG there is no P Wave. I'm an ambo Officer so I know a little about ECGs but my Doctor confirmed this as well. I also have AF I get it usually when I drink White Wine DAM it. So try to limit it. I gave up smoking 10 months ago that also is a stimulant along with Coffee & to much Sugar. Have given up most stuff these days total changes in my life a case of having to if I want to live a healthy life. i find if I jump on the Tread Mill first thing in the morning before I take the Metatropolol 50 Mgs & the Flecanide 50 Mgs morning & Night I have more energy. I keep my weight down to 56 kgs. After the tablets it drops my pulse down to 46 it's so slow but that's what Beta blockers do I know that. I live with it I don't let it rule my life now I've decided that & it's a better way of looking at it. The glass for me is half full not half Empty. My thoughts for AF. Rob xx

lingooz profile image
lingooz

Thanks Rob , cardio registra saw ambulance print out and said PAF , as I say , I now get more symptons so WHEN I get follow up appointment I expect to be asked to wear halter again and for longer . White wine sent me into tachi not had drop since :-( only have decafe drinks to , have lot of sweets though lol thanks for getting in touch , good health to you too x

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