Was told I have paf nearly 2 years ag... - Atrial Fibrillati...

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Was told I have paf nearly 2 years ago after going to gp for 18mths saying something not right of course they put it down to the menapause

barnes12 profile image
27 Replies

Does the frightening thought s every go away have been living in constant fear for 18mths

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barnes12 profile image
barnes12
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27 Replies
vovvarna22 profile image
vovvarna22

I think it depends on how each individual deals with it. I feel anxious sometimes but, mostly, accepting and calm.

Meditation, deep breathing and yoga are all helpful.

Finvola profile image
Finvola

Hello barnes - it's natural to feel concerned, especially as your heart keeps reminding you it is there. My greatest comfort was the knowledge that AF is not a life-threatening condition and I kept that in mind during the episodes.

Take time to do things that you really enjoy and on days when you feel well, make sure to use every minute to the full, even if it is just to think how good you feel.

I have found that it does get less of a fear and this forum is so much help - information is definitely power.

BobD profile image
BobDVolunteer

Hello Barnes and welcome. What medication are you on, Who is looking after you (GP,Cardiologist or Electrophysiologist.) Have you been assessed for stroke risk (CHADSVASC2) and if not why not? lastly what plans have been put in place for ongoing treatment. Many people seem to fall through the cracks and end up purely under a GP which is not a good idea. There are many drugs regimes as well as ablation etc which could improve your quality of life but frankly you may have to fight for some of them so read all there is to know from the main website as knowledge is power. You are not alone and you don;t need to suffer alone as we are all here together in this AF world and need top stay that way.

barnes12 profile image
barnes12 in reply to BobD

Thank you so much bobd and everyone else for your replies I am under consultant at the royal brompton gp said he would care for me in surgery but I said no I wanted to see a consultant I was told I have hyperthyriod that is the cause of my af I am on bisoprol and flecinde plus a statin and medication for my anxiety caused by this af im also on warfarin I said I wanted that not asprin I find the medication makes me tired and get dizzy someone told me the other day that people with af can just drop down dead because their heart just stops that just terrified me

BobD profile image
BobDVolunteer in reply to barnes12

Rubbish Barnes! Relax AF is seldom fatal. What your stupid "friend" told you is just not true. Yes there are conditions where this could happen but not AF . Who are you under at RBHT? I had all my treatment there under JRC but know several other consultants from presentations I have attended.

Regarding your tiredness I feel sure this is the bisoprolol. Well done on the warfarin by the way. Good call!

Bob .

barnes12 profile image
barnes12 in reply to BobD

I see dr j clague at the brompton was seeing a dr w culling at kingston he is a cardiologists I think dr clague in more specialised in af and the brompton so im told is one of the best hospitals must say I feel more hopefully since finding this site everyone is so helpful and I feel im not alone anymore

BobD profile image
BobDVolunteer in reply to barnes12

Great bloke. Sorted me out. Next time you see Jonathan say Bob says hello. He will smile.lol

Bob

barnes12 profile image
barnes12 in reply to BobD

Thats good news bob I feel really good im with the best

merryrobin profile image
merryrobin in reply to BobD

Thankyou for this comment just had ablation very tired passed out on second day it worried me but it was just a faint , not heart attack but still shock.

In answer to your question, yes, the fear should go away the more you learn. AF is not life-threatening but it needs dealing with properly. You should find you can get in control and get used to it if you follow what Bob has written. Having had AF for probably 20 years, I, like 99% of others would say seeing an EP is a must, as no-one else understands the condition fully. Ask your GP for a referral to an EP and if you don't get anywhere, ask on here again and take it from there.

Regards

Koll

devonmillie profile image
devonmillie

I was diagnosed July 2012, have a pacemaker but still suffer with PAF, mostly it wakens me at night (early hours) and I do not return to sleep, can last several hours and I find it very tiring. I live on my own (widowed) last December, and I get quite scared at times. I have been referred back to my cardiologist and am seeing him on 6th May; hoping a solution can be found.

rosyG profile image
rosyG in reply to devonmillie

worth asking you Devonmillie if you are on beta blockers or digoxin as these two are contra-indicated with vagal AF- which yours may be if it starts at night. GPs don't always know about this and the wrong meds make vagal AF worse

devonmillie profile image
devonmillie in reply to rosyG

Hi RosyG Yes I am on Digoxin and also Sotolol seeing my cardiologist to possibly change to a different beta blocker on 6th May will let you know the result.

Hi Barnes, sorry you are so worried about AF, I think we all have been there, it's a frightening condition but you do get used to it in the end. It helps if you're happy that you're on the right medication. As has been said, I hope your GP is looking after you and you're on the medication for this, and if he hasn't done your CHADS2VASC score then please do it yourself to check your risk of stroke - that's the one thing we have to be aware of. Seeing an EP is a great idea, and you do have a right to see a specialist.

Lis

barnes12 profile image
barnes12 in reply to

What does ep mean and chads2vasc mean

in reply to barnes12

Eps are electro physiologists, who specialise in AF, but if you're under the expert at the Royal Brompton who saw Bob I'm sure he will be one! chads2vasc is a tick list that scores how high your stroke risk is - mine is 1 and I score that because I'm female. Other factors include your age and various heart-related things. You can Google it and do it online, I think it's on the AFA website too. Try not to worry, I'm in AF right now, pesky thing, but it will go at some point. Only thing is I can't run a marathon right this minute :)

barnes12 profile image
barnes12 in reply to

Thanks eatsalottie yes I am with the same dr as bob done the stroke risk im 1 hope thats ok

in reply to barnes12

Snap, Barnes, it's the same as me :) I am on warfarin, which Bob will tell you is much, much better than aspirin and I would certainly discuss it with your GP or the lovely guy at the Royal. I've come out of AF at last, after 12 hours, think I will go and run that marathon now, haha. Take care!

Lis

jeanjeannie50 profile image
jeanjeannie50

Yes, I found the great fear disappeared the longer I had AF and the more I found out about it.This site has been a great comfort and educator for me and I recommend it 100%. I now realise that AF not going to kill me. I was trying to find an old diary to see when I was first diagnosed with AF and of course I can't find any from that period! I guess it must be 8 years, but I now realise that I had it long time before being diagnosed. Do you think you'd had it for a while before your diagnosis?

It's so annoying that doctors tend to put a lot of ladies health problems down to the menopause! Mind you when you think about it, doctors can only guess by the symptoms we describe as to what we have wrong and some of us are very good at understating our symptoms for fear of being labelled a hypochondriac.

Members on this forum are always pleased to offer support should you need it. So just fire away as many questions as you like.

barnes12 profile image
barnes12 in reply to jeanjeannie50

Thanks jeanjeannie50

BobD profile image
BobDVolunteer

Jean I read an article a few years ago which stated that ladies get diagnosed less often than men and postulated that this was because ladies always put on a brave face,. make up and hairdo and try to look their best before going out. Thus doctors do not see the real them under the facade. and assume that they are not as ill as they really are. Maybe good reason to go out looking like the wicked witch of the west when yo go to a GP appointment. LOL

Bob

jeanjeannie50 profile image
jeanjeannie50 in reply to BobD

I'm sure that's true, but I've always believed that the better you look the more respectful you're treated. I look ten years older without make up and my hair styled. Honest if you saw the before and after photos you would agree. Unfortunately, vanity has it's price!!

iris1205 profile image
iris1205

Welcome here, and sorry you need to be! but this community is so supportive, often when we are worried or weary of the situation. Don't let the Drs pull the menopause one on you - they tried with me and I believed them for awhile until if was doing bouts of 12h episodes at 180bpm +....... get the help you deserve from an EP and here!

lingooz profile image
lingooz

Hi I have had PAF for ' only about four months land have got myself in such a state my GP has diagnosed anxiety and put me on antidepressants , hope they work soon , sure we all get used to it in time ,feel free to chat with me anytime ,take care x lynn

barnes12 profile image
barnes12 in reply to lingooz

Thanks lynn yes the same with me on so much medication now x

Mrspat profile image
Mrspat

Just to put a slightly different perspective on the menopause issue: I was born with a congenital heart condition which wasn't fully diagnosed until I was 19. I was told at that time, when I ws symptom-free,that I might live life without surgery but that it was possible that things might change when I reached the menopause. They were spot on. I started to slow up physically in my late 40s and had my first onset of AF aged 51 though surgery did not follow until a few years later. I should probably have let them do it earlier.

I've often wondered whether hormones, and not just the female ones, play a part in AF e.g. If an attack of AF makes us panic, does extra adrenaline get released and does that make it worse?

iris1205 profile image
iris1205

There is a hormonal effect in everything in our systems - not to be discounted. What irritates me is that our AF is often written off in the beginning as simply menopause. Whatever causes the AF, it feels the same and I had to battle in the beginning with Drs and emergency rooms behaving as if it was only hormonal- as they said "Madame that is just your little palpitations". I learned to stay very zen and let them hook me up to their ECGs and then they go ballistic when they see 180+ and Afib. Whatever it is, food triggers, stress, hormones, fatigue.... once it is there, it is to be dealt with respectfully !