Newly diagnosed, scared, and needing ... - Atrial Fibrillati...

Atrial Fibrillation Support

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Newly diagnosed, scared, and needing info please.

YannyD profile image
22 Replies

Hi, I've just been diagnosed with Prox AF. Suddenly had an attack of mad crazy heartbeat during the early hours after a toilet visit. It was terrible. Anyway, my question is, does any one suddenly have a very short episodes of mad heart bumping, and racing for no reason? Sat here writing, watching telly, no exertion? It suddenly goes mad and my chest, clothes actually move. If I have some thing held at my chest it moves too with the beat? I'm actually very frightened. I'm on Pradaxa and 2x 5 mg of bisopropol. My heart rate is a steady 60, but then I have these bumps!. Thankyou

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YannyD
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22 Replies
colliedog1 profile image
colliedog1

Hi Yanny...yes i have these......i cud see my clothes moving too.....have to have a monitor fitted for the day next tues.....i have Prox AF too......the hossy said these areectopic..extra beats......very scary....they seem to think its caused by anxiety...we shall see..

YannyD profile image
YannyD in reply tocolliedog1

Hope you get sorted. I know I'm not anxious while reading or watching telly, in fact I'm not an anxious sort of person. After seeing your post, I may visit my GP. It is scary I agree. Sick of it already.

Yes! I get my very worst attacks of AF while resting. Very horrible I know.

YannyD profile image
YannyD in reply to

Have you found a pattern? I'm going to make a diary in case I'm doing something I can change? I do drink a few cups of tea ( decaf) in the mornings. Saying that, it can happen anytime.

in reply toYannyD

No pattern whatsoever. I can just be sitting watching tv and my heart will feel like it's flopping about. I don't drink alcohol, or caffeinated drinks, I simply don't know why it does it.

YannyD profile image
YannyD in reply to

Mines not flopping, its banging, as if I've been running, luckily it fosnt stay long. I'm off up to see the GP I think. I have no caffeine either. Last night I had 2 of those tiny bottles of wine ( 1 glass in each) but the specialist said I could drink in moderation. Its flipping rubbish

expences profile image
expences in reply toYannyD

Try drinking a bit more water, might help.

good luck!

Rellim296 profile image
Rellim296

It is scary to have your heart going bonkers. What you describe all sounds very familiar to me - especially the middle of the night timing and the visible thumping - except I hardly ever have very short episodes. I've no idea what sets it off. Often I'm OK until I get up (although I can wake with it) and it will last for an hour or maybe four or five. Or sometimes longer. It usually settles, slows and improves very gradually and I don't find it easy to know exactly when the silly rhythm stops as I get short or longer runs of normal rhythm and the odd one out of place. Years ago, when I think all the wobbles were tachycardia, it used to stop and I would know at once that normal rhythm was back. I don't find it as worrying now as I used to, but it is tedious. I have a pocket ECG and this will record 30 seconds. The recordings vary - I have started in the last few months to get tachycardia again as well as AF - but mostly they look OK but irregular in a fairly steady way. The beats per minute vary too - 135 or higher or just over 100 or a bit lower. I was lucky that the last session occurred on the day of my EP appointment at the beginning of this month and there was a routine EGC done with all the leads.

YannyD profile image
YannyD in reply toRellim296

Blimey! Seems I'm lucky. Sad for your state, it must be awful. Take care.

Rellim296 profile image
Rellim296 in reply toYannyD

Actually I'm not too badly affected and can function quite well when it visits - it doesn't stop me in my tracks and I don't get any breathlessness like some people do. And I can go weeks between one occurrence and the next, so I don't find it too much of a bother. The uncertainty is annoying. I have had dodgy heartbeats now and then for many years.

YannyD profile image
YannyD in reply toRellim296

No I don't get breathless unless climbing stairs. I do get fatigue in the legs while climbing stairs too. Take care.

rosyG profile image
rosyG

great that you are anti-coagulated Don't worry too much about the AF make sure you get good advice form cardiologist and Electrophysiologist

YannyD profile image
YannyD in reply torosyG

I've not had much advise rosyG, just what to avoid eating and drinking.. I'm discharged from hospital care and am under my GP, that's another thing, no mention of any type of check ups.

Bauldy profile image
Bauldy

This is the place to be if you need advice .....

The more post you read the more you will understand the unpredictability of af, you will learn as you progress, don't be scared to ask questions.

You are at the start of a journey that with medication, surgical intervention and life style changes can be manageable.

I personally started with af Easter last year and am now waiting for ablation, I have stopped drinking alcohol, started to loose weight, do a bit of exercise, I am due to see a doctor at a sleep clinic and feel a lot better and feel prepared for the future.

Good luck for the future although you may be frightened now with knowledge and the help you get it does become easier.

YannyD profile image
YannyD in reply toBauldy

I've come to the conclusion I'm a lucky one. Tablets for life providing nothing changes. The doctor isn't happy that I've been put on Pradaxa by hospital tho. They want to change me to warfarin. Nothing to do with cost they say. Huh! Thanks and wishing you the same good luck Bauldy.

in reply toYannyD

I take warfarin, no worries.

YannyD profile image
YannyD in reply to

I've read warfarin has to be monitored with blood tests etc. Plus many foods have to be avoided? I must read up I suppose, I'm expecting a fight on my hands over the costs.

rosyG profile image
rosyG in reply toYannyD

NICE guidance now includes patient preference on anti -coagulation so do insist

YannyD profile image
YannyD in reply torosyG

Thankyou.

in reply toYannyD

I do home testing. I bought the coaguchek machine from Roche, and my health centre supply my test strips. Works perfectly.

seasider18 profile image
seasider18 in reply toYannyD

Perhaps he wants the money for doing your INR testing:-)

seasider18 profile image
seasider18

If it was a bowel movement and you passed a hard stool that could cause it by stimulating your vagus nerve. I had a conversation with the ward sister when I was having my pacemaker fitted and she said that patients often come staggering out of the toilet after passing a hard stool.

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