I was recently (4 weeks ago) diagnosed unexpectedly with AF. I have a rare congenital heart condition that was corrected by surgery nearly 40 years ago, I am now 43. After my diagnosis which occurred during my routine heart check, I was admitted immediately for a cardioversion, they had 4 attempts but my heart refused to go back into NSR, even for a short period. I was discharged on a high loading dose of Amiodorone, now down to 200mg a day and on warfarin. I am struggling with the Amiodorone, very tired, headaches and aching limbs. I also have massive fluctuations in my weight which my GP helpfully suggested was because I was sitting around at home! My heart rate tends to be quite low, but now I am really aware of it, I seem to get lots of missed beats and particularly at night I can feel my heart beat and lack of it.
I'm trying not to let AF rule my life but at the moment I just can't get my head around it all, husband and older son are struggling too. I have had a 24 hour holter with a view to deciding the next step, possibly ablation, in the next 2-4 weeks. To add to the complexity I am being treated in a specialist unit 200 miles away, which makes me feel quite vulnerable at home so far away.
I am a high school teacher, so I have had the last 4 weeks off with a combination of hospital time and holidays. Today is the start of the new term but after a night of not sleeping and being in AF, I just feel exhausted, so I haven't gone in. I feel pathetic needing to be signed off work, but am really scared at being away from home and in a stressful environment, my workplace is not great and I am only on a temporary contract so I feel that I have little support from them. My GP has said she will sign me off but thinks that going in to work might 'take my mind off things!'
Sorry for the long rambling post, is it normal to feel this anxious about everything? At the moment I can't see the end of the tunnel and with my pre-existing condition I just wonder if I'm on a slippery slope to being quite poorly.
I would just like to add that joining this forum and reading all the posts has been a real source of support.
Thank you
Written by
Rgw101
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Hi there and welcome. I think most of us have experienced a very low point, if not the lowest, in the earliest part of our AF journey. For many of us it's the first time we have had a heart problem and it feels very scary, so yes, it's completely normal to be very anxious, find it overwhelming and see a slippery slope ahead. Remember it's just the heart's electrics that are up the creek and it gets easier to deal with it with experience. And it can be a tunnel with light at the end too. Lots of ways forward.
I first found this forum 2 years ago and without it I would have had huge difficulty with my AF and subsequent ablation.
I am glad that you are on warfarin. That's your stroke risk covered.
It worries me that your medics are 200 miles away. Can they refer you to a local Electrophysiologist to deal with the AF? Can you be offered an alternative to Amiodarone as this is a drug that can cause thyroid problems?
It is often said on this site that AF will not kill you. No, but in my experience it can leave you feeling like death warmed up.
You must be proactive. Do not let things drift. Keep a diary to record your symptoms and medication so that you have a ready reference. Do not be afraid to ask questions or seek assurance on this site.
Hi there and welcome to our forum, you will get loads of advice and support here.
It's certainly a shock and bewildering when you first discover you have AF, but in time you will get used to having and managing this condition.
First may I ask is it just since your diagnosis of AF that you have started to feel ill, or did you feel unwell before? How often do you have your usual heart checks as I guess you may not have had it at your previous check up? I have taken Amiodarone in the past and felt fine on it, however it's a fact that AF drugs affect people differently. While one person thrives on one drug it can upset another. It's generally not a tablet to be taken long term.
Losing weight and changing your diet to more of a plant based one should help. Also avoiding eating products with artificial sweeteners and additives, these were certainly triggers for me. Some people swear that taking magnesium supplements have helped, so there are some things you may like to try.
Personally, I would try going back to work as this is what most people do and see how you get on. It may just take your mind off your AF for a while.
Diagnosis of AF is always a shock and yes we all suffer emotionally at that point." Oh s---- there is something wrong with my heart. I'm going to die" is the normal response but very soon we learn that AF is life changing rather than life threatening. In your case and with your heart history it musty be doubly worrying but please relax and understand that it can be controlled and you can live a fairly normal life. (My life has never been normal so I don't know what that is. )
I do recommend that you read all you can from our main AF Association website as knowledge is power. In this way you will be able to engage with the doctors who treat you from a position of partner rather than just a customer.
Feeling your heart all the time is a common problem and you will in time get used to it although you will now always be far more aware of it than those with out AF. Just another aspect of this mongrel condition.
Amiodarone is a powerful drug with many unpleasant side effects but it is the most affective anti arrhythmic drug available , hence you being prescribed it to attempt to chemically cardiovert you or prepare your heart for a second DCCV.(electrical cardioversion)in the future. Short term it is fine.
As others have said. great you are anticoagulated for stroke prevention as this is very important.
I presume that you will be seeing an electrophysiologist at your forthcoming appointment and I am sure he/she will explain everything but just in case there is a great booklet on ablation on the main website.
As far as your current situation is concerned whilst I understand your worry you must get yourself sorted out properly first and if that means compromising your job for a short while then that is what you have to do. Work won't worry one jot if you make yourself more ill by worry so join the sod it club and concentrate on coming to terms with your new diagnosis and learning how much you can do.
As far as family goes I am sure that they will learn along with you if you let them. I must confess that I never fully understood how my wife and sons felt until they were interviewed for a film I helped to make about AF some years ago. Try not to go it alone and do involve them. I found that I just became bad tempered and hid the truth from the, which did not help.
We all understand how you feel and hopefully you will find some comfort amongst this disparate group. Ask any question and we will try to help as best we can.
I'm sorry to hear of your problems. When first diagnosed I was in shock and it has taken me many months and membership of this forum to calm down and be able to enjoy a good quality of life even with AF, hopefully you will do the same. As was said before AF is an electrical problem, it doesn't kill us. The main risk is of stroke and you have that covered by being on an anticoagulant so that's good. I also travel a long way (to the mainland) to see a specialist, Initially I was terrified because of the distance but now I know I am on the medication and anticoagulated I can sit out any episodes at home and I know what to expect and relaxing helps a lot. I'm trying lifestyle changes to help myself and to give myself a feeling of some control. Welcome to the forum, but sorry you had to be here, hope your quality of life improves soon,
Best Wishes,
Jane
Hi and welcome. I've all been there and know you feel, new to AF, sudden shock, stressful job, stressful if you do, and stressful if you don't, etc! Anyhow, if you want to get proper treatment and not waste time, see an EP and don't put up with anything less.
I came down with AF badly whilst in a stressful job some 14 years ago. I was put under an EP immediately who first of all found some drugs that worked perfectly in terms on stopping the AF, and I was quickly back to normal. But after a few months or a year, the drugs started to affect my memory, so I couldn't work properly. It was quite funny in a way but as far as work was concerned. So my EP did an ablation. Then I had no AF and no drugs either and was completely back to being a normal person. I did eventually give up the stressful job and went into agriculture instead, so biggest problem now is counting sheep 😄.
Good to have found this forum, wish I had early on.
Hi and welcome, not much to add as some excellent advice already given.
Anxiety is your worst enemy so distraction helps so with your Doctor there UNLESS your work makes you stressed - in which case go to the SOD IT club with Bob! Stress and anxiety (same bodily reaction) are worst triggers for AF and general health. There is something different to AF stress than ordinary stress - it is physical and although worry thoughts will undoubtedly make things worse - it comes with the territory so get used to the feelings in your body and don't add worry thoughts on top.
No1 - learn to deal with the anxiety - do anything that gives you pleasure as this releases endorphins which are the natural antidote to cortisol the stress hormone. Pleasuring yourself in a healthy way - exercise a little every day - walking 15 mins today in fresh air - but go at your own pace, eat healthily - mainly plant based diet, avoid caffeine and alcohol and added sugar or artificial sweeteners - all this will help you lose weight and stay healthy generally but is also something positive you CAN do to help yourself.
It take times to come to terms with this condition remember that there are good treatments, people live long and otherwise healthy lives with AF - above all be really kind to yourself, not critical, you are not pathetic because you are struggling with a physical condition.
Thank you for all your helpful comments. I have contacted my work and they would rather have me in for what I can manage rather than off on sick. I think that might give me the confidence to give it a go, I was just worried that I might go in and everything would be worse.
BobD - I too am hoping the Amiodorne is a short term regime designed to either put me back in to NSR or make a future cardioversion more successful.
countrygirl1 - it is a long way to my specialists, I am in the North West and I am treated at the Brompton in London, but they know my other heart condition well, and if I need an ablation then I have different plumbing to cope with too which makes things a little more complex.
I've given up alcohol and caffeine. I suppose it's just shock, I went for a routine appointment, expecting them to say 'No change, come back in 12 months' the next thing I know I've been admitted to hospital as an emergency, 200 miles from home, not planned anything for my kids, not brought anything for a stay in hospital - and for a condition that stress and anxiety seems to make worse!
Thank you again for all your positive and honest replies, it feels better knowing that I'm not the only person to feel this way.
I too have been treated at Royal Brompton and I live in Devon 250 miles away so understand your worry but it can be done. It has worked for me these last 9 years.
Hello and wecome to the forum. Other members have given excellent advice so I'll just add my best wishes for you and your future. The chaos and fear I felt at diagnosis was so difficult to deal with and, like you, I was so glad to find this forum.
A good treatment plan and somehow keeping anxiety as low as possible will help - as do little success stories in trying to keep to a normal life.
My school was very sympathetic to my AF when first diagnosed, mainly because the head had it as well. Flecainide kept the AF at bay for about a year, but after it was contraindicated, sotalol kept the rate down when I was in AF and I could still teach. However the attacks gradually got more frequent and prolonged and after 5 years I had a cryoablation and not looked back. No drugs at all, 2 short AF bouts but lots of ectopic episodes inbetween long periods of calm. QoL vastly improved in the year post-ablation.
Hated amiodarone, mainly because of what I'd read on the internet, found bisoprolol too problematic and also let anxiety get a foothold without realising what it was at first. This made my symptoms far worse than they really were. Still have issues with the anxiety and use sotalol as a PIP, mainly as a support blanket.
I have now retired and since then have only realised just how stressful teaching is! Now work in the "real world" for two days a week and it is like being in the staff room all day! Absolute doddle in comparison.
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