Hi all this is my first post. I have been diagnosed and suffered with AF for 6 years now. Started off on bisoprilol 2.5 and each time I was rushed in to hospital they upped my meds and put me on amiodarone this worked good but I had side effects with the amiodarone my skin was on fire in the sun, bath and if I was hot and bothered. Took me off amiodarone and went on dronedarone. This worked good too with no side effects. In September of this year I was rushed in with my AF again they found I had over active thyroid which gives palpitations and that was the reason I was rushed in put me on Carbinazole 40mg for this thyroid. Further tests on this thyroid showed it was drug induced from the amiodarone. a further appointment with the consultant and he has increased my bisoprolol to 15mg dronedarone 400mg morning and night and he has reduced the carbinazole to 20mg. Since September I am in AF every day for a few minutes but mostly hours. I have explained this to the consultant and he says if I am ill I must go into hospital. I asked the consultant is this from the meds I am taking but I am none the wiser. I try and cope with this as I would be in hospital every day. No operation has ever been discussed with me and I feel so alone in this. I am not sleeping good my palpitations beat so hard they are up my neck and up to my head, I feel sick and want to pass out. Sorry to keep on but feel I have no-one to talk to who understands how you feel.
Jenny
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Triker1
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Hello Jenny and welcome to the forum. I am sorry that you are having such a miserable time - your episodes sound very debilitating. You mention a consultant - is he or she an Electrophysiologist (cardiologist who specialises in heart rhythms)? The consultant's response to your description of your symptoms is extremely unsatisfactory (if you are ill??). You told him you were ill!
It is sometimes so difficult to get to the right person to obtain the correct treatment package best suited to our needs. Many of us on this site have had difficulties with physicians who either knew nothing about AF or treated it - and us - in an offhand manner. in your position, I would certainly be seeking a different consultant and definitely an EP who can discuss and agree your treatment. Such a positive outcome would give you back some control of this condition.
I understand why you feel so alone - it is a very lonely affliction - we all look 'normal' but feel like death warmed up and being fobbed off with generalisations from physicians grinds us down. I got so fed up with my symptoms (mild compared to yours) that I went privately to an EP and got a drug plan which has worked for me.
There are some very knowledgeable posters on this forum who will be able to give you good advice and we are all in the same boat. Keep posting and keep well.
Hi Finvola thank you so much for replying to me. I was under a cardiologist until last year when he took me off amiodarone onto the dronedarone. He said he didn't need to see me no more as it was controlled. That was all ok until September of this year when everything changed. In desperation I did ring his PA and explained how I have been feeling and I thought I would have had another appointment by now. As for this consultant I have been seeing since September I don't know what his speciality is. I have put my faith and trust in these Doctors hoping to get some answers but am still not any the wiser. I have never heard of an EP before.
Jenny, if you look on the AFA website you can check for Electrophysiologists (EPs) in your area. Your GP would be able to refer you to a consultant of your choice in England or Wales, I believe.
Do follow it up as you shouldn't have to suffer in silence. An EP can advise you about an ablation if that would be appropriate and also to review your drugs in a more structured way than just assuming your condition is controlled and casting you adrift. That is not acceptable.
Hi Jenny. Finvola has given you superb advice. We really do understand what you are experiencing because we've been there too!
I was very lucky to see a Consultant who understood AF. I had seen his predecessor who had prescribed Amiodorone which did nothing for me ( except probably cause hidden damage ). Anyway the new Consultant refered me on to an Electrophysiologist.
You need to insist on a referal to an Electrophysiologist . As Bob will tell you this is an electrician. So far you have only seen a plumber.
Good luck.
Hi Jenny - yes, Finvola's absolutely right, you shouldn't be suffering like this. Look at the list of EPs and then insist on seeing one. It's terrible that you're seeing the wrong person and getting fobbed off like this.
Jenny - a thought. If the AFA site shows there are no EP's in your area, it may just be that they haven't made themselves known. My area (NI) showed none but there are at least three here, including one who is quite well known. Your GP should have the info.
After my last appointment on 4th Dec. I thought I might have had some answers but came out as confused as when I went it. Had resigned myself to this being something I just had to put up with even at some stages I should have gone to hospital. If I phone my Doctors they will not even give me an appointment they say I have to go in on a 999.
I thank you all so much for listening and your advice and I am going to make an appointment to ask to see an EP.
Thanks, will definitely look in to this but surely for the amount of times I have been admitted you think they would have referred me to an EP. Cardiff is not so far away.
Hello Triker1. There is an EP at the Heath Hospital in Cardiff. His name is Mr Leong (I think that is the right spelling). I am under a cardiologist at the Gwent and he made the referral to Mr Leong for me. I had an appointment last month and found him very knowledgeable and helpful.
I have not been in AF for about a month which is great news, don't know how or why unless the medication for the overactive thyroid has finally started working. Problem is I am due to have a 48 hour monitor on tomorrow, why couldn't I have had this monitor when I was so ill.
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