The need for knowledge

[jayedeebee]

Hello to all. Firstly let me say how delighted I was to find this site and to find other sufferers of AF. I thought I was the only one!!! So to read your posts has been a real tonic.

I had my first bout of AF about 7 years ago. I have had high blood pressure since my 20's and was told that AF was a natural follow on. I had a few bouts lasting a few hours over the years but nothing worth worrying about.

However last week, the AF kicked in with a vengeance. Whilst my heart rate was only 120bpm, it was erratic to say the least. Sometimes the pulse just clattered away without an actual beat. It was scary. My doctor put me on Bisoprolol 2.5mgs (I was already on Candesartan and Adizem which I had been taking for the last 7 years.

As I sit here (after another GP visit and doubling of Bisoprolol to 5 mgs) my heart is still snapping, crackling and popping and apparently has slowed to 100 bpm!! I feel absolutely awful! My whole body is shaking in time to the heart rate, I'm sweating and feel generally unwell (and also scared to death)!!

My doctor seems to think that slowing the heartbeat as opposed to actually getting it back to normal rhythm, is the important issue. Is this so?

I'm still at the 'why me' stage. I'm healthy, don't smoke, drink in moderation and work full time and have the usual stresses in my life as other people, who don't get it. My father died of a stroke (in fact several) and so I know i am at a higher risk.

Does anyone know why it starts? Are there ways of preventing an attack? I note that most episodes come on whilst resting. Mine usually start in the early hours and strangely, when I wake up I want a really deep stretch and when I do, it seems the muscles around my heart 'pop' and off goes the AF!!

Sorry this has been a bit longwinded, but any advice (or comfort at the moment) would be greatly appreciated.

JDB

[jennydog]

Oh, how I sympathise! I had an ablation this week and feel so much better now. I did prepare details of my experience several days ago but it vanished

so I'll have to retry. My advice is that you need to see a Cardiologist who will refer you on to an Electrophysiologist if necessary.

Do not minimise your symptoms. Make sure that they realise how rotten you feel. If you play the quiet,long suffering,coping hero then it will drag on and you will not get the attention that you need. Here I am speaking from experience. AF is unlikely to kill you but it does get worse in time. You need to be protected from stroke----------- warfarin?

Good luck and learn from this site.

[Finvola in reply to jennydog]

Quote:

...'Do not minimise your symptoms. Make sure that they realise how rotten you feel. If you play the quiet,long suffering,coping hero then it will drag on and you will not get the attention that you need. ..'

jennydog - that is most excellent advice! It certainly has been my experience and I suspect many of us who have PAF usually feel 'normal' and well during visits to consultants and tend to show that aspect of ourselves and mentally block out the misery of episodes - or get sidetracked in some way. I have now noted down not just episodes, but how rotten, useless and knackered I feel during and after them. Quality of life is just as important as symptoms!

JDB - welcome to this forum. There is so much excellent advice here from people who know what you are going through and can guide you towards getting the best help from medical professionals.

Information is power - good luck and keeping reading and posting. xxx

[jennydog in reply to Finvola]

Finvola, thank you for that. I have a high pain threshold - 2 sons born without pain relief. My recent ablation has shown enlarged atrium which was a surprise to them. I have not been able to adequately describe my AF but I have felt atrocious on occasions. And if another medic ever says" you're suffering from palpitations, are you?" then I am likely to thump them.

Very best wishes.

[BobD Volunteer]

HI JDB and welcome to the forum. Yes AF is always progressive but there are a number of treatment options. AF is seldom fatal but it does increase your risk of stroke by a factor of five so assessment for stroke risk is vital and since you have high blood pressure even controlled your are half way up the scale straight away.

Your GP is not the best person to treat you to be honest and you should ask to see an cardiologist in the first instance and maybe an electrophysiologist ( a cardiologist who specialises in rhythm problems) GPs seem to throw bisoprolol about like confetti and not everybody responds well to it, in fact many people are wiped out by it. GPs seem reluctant to prescribe anti-arrhythmic drugs as well and many are scared stiff of anti-coagulation should you need it. (Look up ChadsVasc on the main site and check your risk score.)

Regarding what causes AF whilst we know what it is nobody really knows why. There has to be a pre-disposition to it which can be genetic or acquired but few people experience it in the same way as it is such a mongrel condition. That you seem to have your events at night or during rest would suggest a vagal connection for which bisoprolol is probably the wrong drug which is another good reason to see a different doctor about it.

My best advice is to read all you can from the main AFA website and fact sheets so that you can approach any doctor with some idea of what you have and then you are not just a customer you are a partner in your treatment.

[Hidden]

"My doctor seems to think that slowing the heartbeat as opposed to actually getting it back to normal rhythm, is the important issue. Is this so? "

With me, the answer is no. I have a slightly fast heart rate (top end of normal) and always have, and my EP says he is not worried about it and only prescribed rhythm control drugs which have always worked, although had to try a few to get the right one.

My GP also prescribed Bisoprolol which is completely the wrong drug for me. EP took me straight off it. That doesn't mean it's the wrong drug for you. I believe GP's cannot prescribe rhythm control drugs but often don't mention that !

Unless you have a GP with particular experience / training in heart arrhythmias, I would get referred to an EP or at least a normal cardio as soon as you can. If you can't get one soon and can afford it (£150-£250) ask for a private consultation with an EP and you may be able to get in much sooner? EP's know what they are doing, it's their speciality.

Koll

[jayedeebee in reply to Hidden]

Hi Koll,

I've realised that I've been paying towards private health insurance for the past 2 years. Having always been a healthy specimen I have never used this resource before. So if I can get a referral, the insurance should pay for most, if not all, of a consultation. I note my policy states there is a helpline to speak to a GP expert, I will read further and see if this could apply to me, but then I wonder is another medical opinion a good idea and should I wait an see an EP or cardiologist.

My AF episode is still ongoing. I was at a very low ebb last night and I was very scared. Having never had an episode last longer than about 12 hours, ( and that was many years ago) this whole week has been a misery. I'm no whimp but confess to sobbing my socks off last night. It didn't help in the least but there's so little else I can do. I'm back to work tomorrow and wonder how I'm going to cope with the AF and the general feeling of 'ickyness'. I'm desk bound for most of the day and thus wonder if that immobility will be a problem.

Reading through this, I sound so negative!! for which I do apologise.

JDB

[Hidden in reply to jayedeebee]

Hi JDB, It might make you feel more normal to know that I have also started off a bout of AF with a good morning stretch. I met a patient in hospital whose AF started when she reached up to a top cupboard! We are a funny lot!

Regarding the rate v rhythm question . This was put to me on the AMU ward -- I was told that the latest opinion is that rate or rhythm control is equally good. I am not convinced. Anyhow , they couldn't even slow my heart rate never mind get it back into rhythm so it wasn't an issue in the end. ( I had electrical CV )

Do make use of your private health insurance & get to see a real expert ie an EP as soon as you can. It does take over your whole life if you let it & you will feel so much better when you have seen a specialist.

All the best

Sandra

[Hidden in reply to jayedeebee]

Hi JDB

I had private insurance at the time and had everything done privately, including a 100% successful ablation. If you've paid for it, or your employer has, use it. Unless it was a pre-existing condition you should be able to surely?

The thing is, if this is new to you then it is scary. So to get it dealt with as promptly as is reasonably possible is important, and you appear to have this opportunity.

My understanding is that an EP is a cardio, but has gone on for further training specifically for heart arrhythmias. I would myself definitely go straight to the EP if at all possible. Some people have said you need to be referred to an EP by a cardio, but I've not heard of this and certainly I wasn't, straight from GP to EP for me.

I'm going to say the thing I hate to hear myself, try not to worry about it (sorry!). I've had arrhythmias for donkeys years and got blazay (spelling?) about it so it's easy for me and others to say, but it is so true. Worry makes things worse, which makes you worry more etc etc.

That's another reason why seeing an EP is so important because you know you're seeing the person who is a real expert in your problem and just that in itself is so reassuring.

Hope you're feeling a bit better.

Koll

PS. You're very much not alone. Loads of people have AF and live with it. Jessie Jay's had it since she was 8.

[Rellim296]

Good replies, as ever!

Sorry you have been struck down Jayebeedee.

What you say is all too familiar and I can't see what I've ever done to encourage AF, except drink too much caffeine perhaps and have high blood pressure.

There are a lot of dietary changes you can (and may have to) make. Triggers for attacks of AF include caffeine and alcohol. Artificial sweeteners perhaps. The AF way of life is a very healthy one! It does introduce the use of medication, but there are various paths ahead to good quality of life and there's a wealth of information available here.

[jayedeebee]

I think I posted this earlier but cannot find it, so with the fear of repeating myself I'd just like to say that I've phoned my health insurers and I have a cardiologist ringing me back at 1:45. It will be good to see his/her thoughts and advice. I'll post the outcome.

JDB

[jayedeebee]

The cardiologist just rang me. She was very helpful and kind, which made me relax immediately. I explained my history and medication etc. Bottom line is I need to see a cardiologist asap, she also recommended bloods to eliminate thyroid problems (my mother had a hyperactive thyroid, as does my first cousin). I have recently had a rather nasty infection in my face, for which I am still taking antibugs. She said this 'may' have had an impact but is unlikely. She has recommended that I ring my doctor and ask for a referral to a cardiologist. She said I would possibly need either cardioversion or ablation and would need anticoagulants, so to get him to at least prescribe digoxin. She also said I needed to get my bp and heart rate checked today too. I checked it myself whilst talking to her and it wasn't fast really, just very erratic. So she said the digoxin might not work if its not fast.

I've rung the GP surgery and asked for a call back. I was all go go go earlier and feeling very brave, but now as time goes on, that old yellow streak is returning

x

[Loo53]

Mine started when I got up to make a cup of tea! There is a history of thyroid in my family in 3 of my sisters but I'm fine. My mother was fine so doesn't always ring true its going to pass on to everyone in the family!

[Hidden]

Sounds good jayedeebee, getting things moving along nicely. If you're heart is erratic, maybe you need rhythm control drugs many of us?

I often wonder about my thyroid as I have a number of things, like vitiligo, that point to my thyroid overdoing it, maybe not enough to be classified as overactive but sufficient to cause problems or aggravate them. I'm going to ask if I've had it checked, which I guess I have.

Koll

[jayedeebee in reply to Hidden]

The doctor did ring back and I told him I'd spoken to a cardiologist and her recommendations. He said that he'd had a report in on another lady with the same problem as me and the cardiologist recommended 10mg of Bisoprolol. I mentioned digoxin and he said to take the 10mgs until my appointment on Wednesday and see how things are. If the heart rate is still erratic then of course he'll prescribe the Digoxin.

So now on 4 times the dose I had the other day, the heart has gone much quieter and my body doesn't actually shake with the heavy beats; but its still erratic. I have a pain (for want of a better description) in my left shoulder at the back and when I walk or bend over I feel like I've exerted myself...not as much as running but certainly have done too much. I'll mention all this tomorrow too.

I went back to work today and I'm very tired as a result. I know how a hod carrier feels after a long shift now

JDB