Scared and upset!

Having been diagnosed with AF following a bout of flu before Christmas I finally underwent an angiogram followed a couple of weeks later by a cardio version. When I first got it I was rushed up to hospital as they told me my clotting levels were too high and I was at risk of a stroke. They gave me heparin and I am now on warfarin and they tell me I'm safe. I then had an episode in A&E the day before New Year's Eve and that really freaked me out. I went back to my GP yesterday as my heart was bumping around a lot and was really upset and hugely disappointed to discover I've flipped back into AF only 2 weeks after being cardioverted. I'm really tearful and anxious and now have to wait to see what the plan is for the future. I'm so glad I've found this site as I have been struggling on my own. There are some truly heartening stories so I'll keep reading them and hopefully this will help me get some sort of normality back. I'm scared to close my eyes at night for fear I wont wake up!! I feel a bit of a fool for thinking that but there it is. Friends and family are lovely and supportive but they can't understand how scary the whole thing is. Perhaps I'll be offered an ablation who knows. Feel better just writing my fears down. Thanks for listening.

22 Replies

  • Only too happy to listen, HMW. All of us here understand the fear and the worry that comes with a new diagnosis. It is a struggle when no one around you had been through this and I am glad you have found this forum to feel like you have a support group. Don't feel foolish for being so scared. You are taking a good step to decreasing your anxiety. Journaling or writing down your concerns in any way is helpful. Also meditation is a wonderful way to try to get a grip on that anxiety. Some of us here have also had Reiki treatments to help with our stress and anxiety. While you wait for your plan of how best to treat your A Fib, do what you can to lessen the stress. When you do that, it helps your heart in many ways. Keep talking to us if it makes you feel better. We are all friends who have been through this and have learned how to live with A.F. and do it well.

  • HMW1953,

    Welcome to the forum.... First don't feel like a fool. We here have all been where you are now. As has been said many times here, Finding out that you have AF is the worse part. It is scary finding out you have something wrong with your heart. The best way to get past that initial shock is to learn as much as you can about your condition and that will fight off the fear. The main AFA site and also have all of the info you need to know. Spend a bunch of time learning exactly what AF is and how it affects you. Also learn about the different meds available. There are basically 2 types: Rate Control and Rhythm Control. Both of those sites have great info on the different meds and what to expect from them. Also read through the procedures available for those with AF. I promise that if you go into your first appt with a good understanding of AF and the treatments, and a list of questions (write them down because you will forget them during your visit) you will come out with a better result.

    Yes, people who have not experienced their heart trying to jump out of their chest really can't understand the feeling. I am 58, have had AF for 13 years and my wife of 33 years still can't really understand how it affects me. A lot of people think you are just over stating the problem. Don't let the return to AF get to you. A cardioversion is only a temporary way to bring you back into NSR and is not meant to keep you there. It could last an hour or a year. It just depends when the next attack happens.

    Be very happy that you had a Dr who recognized the risk of a stroke and started you on warfarin. We hear way too often about someone who was not on an anticoagulant because the Dr didn't think they needed it and then had a stroke after an attack. The statement that "You Are Safe"is not 100% true but your chances of developing a clot have been GREATLY decreased by being on warfarin.

    I know the feeling of thinking your alone in this. But there are many here who are in the same boat you are, so you're not alone.

    Please feel free to ask any questions you have or if you don't understand something that was posted. Many of us tend to use terms and names that some do not know so ask away. Also if you just need to scream it out, we are here to listen. You don't have to thank us for listening, we here all know how great it is to just talk to someone who understands and cares. We are happy you found us.


  • Thanks so much for your lovely supportive response. I will sleep better tonight knowing I'm not alone with this.

  • Hi HMW

    Gosh it is scary isn't it and we have all been there, and yes cardioversion can last from minutes to months but not usually much longer than that.

    The good news is that you are on warfarin, and now the risk of stroke is much reduced, and now you are through that, take a few deep breaths and start thinking about what happens next.

    They might try a cardioversion again, either external or internal (like your angiogram if you had a full one) or they might put you on rythym control drugs, it really depends on what else is going on with your body. Loads on information on this on the AFA website.

    The main thing to get really stongly into your head is that although A Fib is horrid, difficult to explain to people, and at times bloody awful, frankly it's not likely to change your mortality risk very much, it's all the other things which need to be controlled if there are any other problems with the heart or diabetes etc etc.

    We all understand those fears you are expressing, but believe us in that you will get through this, and whilst not blase, certainly learn to cope and live with the A Fib whilst you are going through the treament.

    You already have two answers from 2 of the stalwarts of this forum, and I agree 100% with their advice, read read, ask questions and then read some more

    Welcome to the forum, you are in exactly the right place, you are now not alone and are amongst friends, so things are looking up already :)

    Take care and try and get some good long sleep, you will feel better after that


  • I'm so glad I joined this forum as already I feel more positive about things. I tend to steer clear of finding out too much info on the Internet as I can at times hook on mainly to the negative stuff which I know impedes my recovery and stops me sleeping. Following an echo I have been told that my left atria is dilated however I have good left ventricular function. When I was first told about this enlarged part of my heart I was really worried and couldn't stop thinking about this. I asked one of the clinicians about this following my cardio version and he told me that once back into normal sinus rhythm there is no reason why my heart muscle can't shrink back to normal size. However there seems to be conflicting information that I'm receiving about this. Although I struggle a bit going uphill I am making sure that I walk a lot so that I can strengthen my heart. Thanks for your comments it's making such a difference. I wish I'd found you before :0)

  • HMW, Great... Going into this with a positive attitude can only help. I understand the fear of reading stuff online. Some sites can just scare you to death and really give you no hope or answers so they are totally useless.

    BUT the 2 listed:

    Are not that way. They provide the information needed to understand your AF and give you all of the information about treatments so you can choose wisely. They help in a positive way.

    Also SRM linked a book which is very good at explaining AF and treatments and coping with AF. It is:

    I know the author and he did a great job of writing this book and providing hope. You can get it directly from him or also on amazon. Also on his site you can get the ebook.

    About the size of you atria. Both are correct. The atria can enlarge due to AF and it can also shrink back to normal (over time) after the attack is over. But if AF is left unchecked for a long time, the atria can enlarge and remain enlarged. So the answer is to do something to correct your AF.

    To jump back up a few lines... Learn, Learn, Learn... On this and other AF forums we talk quite a bit about how GP's and some specialists do not have a solid grip on AF and it's current treatments. When you get that answer from a GP that doesn't really align with what you have learned from those 2 sites you can question and get pointed in the right direction. A large percentage of AF patients have absolutely no idea what AF is and just accept & follow the orders of a Dr who is actually 10 years behind times on treatment of AF. That is why these sites are great. That exact thing happened to me. I followed a cardiologists directions for almost 10 years in the wrong direction. He was a great Dr for a valve problem or blockage problem but when it came to a rhythm problem... He was clueless. I switched to an Electrophysiologist, They are Cardiologists who specialize in heart rhythm problems and the electrical functions of the heart. Most Cardiologists deal mainly with the mechanical functions of the heart.

    Stay positive and keep us up to date on what's going on. Ask whenever you have a question.


  • I have suffered with arrhythmia of my heart for many years but more recently my heart has been going into AF. I ended up in A and E last weekend with a longer attack than normal so am now on warfarin. I have been on it before but only short term and then was put on aspirin. I too was scared and quite worried but since reading the many comments of people who have had first hand experience of what I have been going through has been a real encouragement to me. I did fear going on warfarin as I know of someone who experienced severe internal bleeding but realise if you are closely monitored when you are put on a new medication the risk is not high. The risk of stroke without the anticoagulant drugs is of course much higher and reading all the comments of those who have been on warfarin for years has greatly eased my fears. I too would like to thank everyone for the positive comments that we are not alone and can support one another. I hope that like me, when you lie down at night and your heart seems to be extremely erratic that you can rest in the knowledge that there are many of us who also know what it is like as it is more common than you think. Bless you.

  • Welcome HMW to this well of info and great people who will give you support and knowledge to deal with AF. We have all felt the fear , wondered if our lives were ever going to be worth living again....and have found that yes it is ! Find out all you can as this reduces the fear and puts you back into control. I didn't want to go on Warfarin but am so glad I am ; it took 7 years before I was and now relief is what I feel. Just to know my chances of a stroke have been dropped several levels is so good.

    Keep relaxing ..meditate or go yoga or rieki as all these reduce stress which has a knock on effect of making you feel so much better. Write all your questions down ....if you're anything like me I forget some ( senior moments strike again in my case) when faced with the consultant!

    It's hard to explain to family or friends just how an AF attack can make you feel as from the outside you look normal so it's really great to come on here and moan or just talk as they all understand .

    Take care and know you're not alone


  • Hi HMW1953

    I agree 100% what has been said, knowledge is king. I was told way back in the 1990's about a new procedure called "Ablation" that was being trialed at Birmingham and London only but was only showing a 20% success rate at that time. Things are moving forward all the time. ashtma was treated with Valium in the early days. You may have to change tablets to get the one/ones that are best for you as a unique human being we react in different ways to different drugs. Best thing for the warfarin is try to keep your diet stable were ever possible.

    Positive Mental Attitude is the way forward

  • Hi HMW, the expression "feeling your heart bumping around" is so descriptive!

    I had an AF episode (not an AR episode, which is what I called it when I first visited this site for help and support!) back in Jan during a bout of pneumonia, and spending an overnight in the coronary care unit was quite worrying, so I know how you feel. My heart rate was 150 and irregular when I was admitted to A&E, which came down quickly with the drugs I was given.

    A blood test came back fine, and I was discharged the next day with betablockers and some follow up appointments for an echocardiogram and a 24hr heart monitor. Another Xray followed, and in April I was told the Xray, echocardiagram and 24 hr monitor were ok and I was given the all clear. I've since had another chest infection (I think - feels the same as last time but the Doc, after a clear ECG, gave me a stomach remedy!) I've had several AF episodes in the last few weeks, but haven't felt particularly unwell and as my heart rate has never exceeded 100 haven't re-commenced the betablockers. I'm sure when I get over this chest infection I'll be fine. I suppose my message is - stress doesn't help the condition, so if you can manage not to worry about it, that's a big step.

    I would welcome any comments about my case, as I suppose not taking any meds may not be the best, but my GP doesn't appear to be worried.

  • Hi, I remember being very scared when I first found out I had af.......I read everything...scoured the Internet .....worried...saw 6 specialist...some at great cost.....went on warfarin.....I am in permanent af....but don't have a high pulse rate although it bounces around of its own now I hardly ever think about...I just take the pills and get on with life....hope this is not a death sentence....

  • Thanks for the links to the AF websites Tim and the book title. I'll have a look this afternoon. My beta blocker meds were changed to sotalol following my cardio version and i spoke to a cardiac nurse about this and he mentioned that it's 'a bit of a dirty drug' - not sure what that meant and at the time buried my head a bit as i didn't want to know!! Has anyone heard this turn of phrase? Could mean that it can affect other organs I suppose? I didn't want to change from bisoprolol 5mg as it made me feel better and reduced my heart rate. Have to say that sotalol 40mg twice daily hasn't made me feel as good. This may be my imagination but am not sure. They changed my meds because apparently sotalol targets the atria area of your heart?? Thanks everyone - Heather

  • Sotalol is a combination drug which includes rate control drug and a rhythm control drug together. All of the drugs, especially the rhythm control carry some side effects. But this combination of rate and rhythm control could make you tired. They changed you because it targets the cause of AF and also slows the heart rate when an attack happens. By controlling the rhythm it should lessen the number of attacks that happen and if they do happen then the beta blocker will slow the heart rate a little.

    Did they keep you in the hospital when they started this drug? If it ends up not working for you there are many other that can be tried. But the best bet is to try and stop the AF. You mentioned an ablation. Talk to your Dr and see if this is a good route for you. The earlier you catch AF and try the procedure, the better the success rate. Even though I had AF for 13 years (probably 15 or 16 years total) I chose to have the ablation because of the hope of getting off of the drugs. Mine was only 11 weeks ago but it's going pretty good for now.


  • I agree Heather that Sotalol doesn't make you feel good - I take as 'pill in the pocket' with 40mg this morning for bout of AF - relieved that at the moment still settled but I feel so drowsy heady and fed up compared to a lot of people much worse its nothing......My GP is referring me back to Cardio ? Change to Flecanide but reading the possible side effects think maybe I'd be better sticking to Sotalol?

  • Am new to this forum and website

    After reading the content and comments I am impressed with the caring attitude of contributors

    I have learnt a lot more about AF/medication/procedures which will enable me to ask questions this week when I request a review with a cardiologist

    I suffered a CVA in 2004 after I was diagnosed with POSSIBLE paroxysmal AF two months prior

    I believe I had suffered with AF for many years but it was not evident on ECGs

    I have been taking warfarin since 2004

    I believe I am now in permanent AF

  • Globetrotter, Did they put you on warfarin when they diagnosed you with AF or after you had the CVA?

    We all know what you mean about not catching AF on an ECG. It really knows how to hide. You just have to hurry to get an ECG when you feel it happening.

    Also, Welcome to the forum... Ask all the questions you'd like. We all are here to help.


  • You will get a lot of good support from this forum and its members. I only joined a day or so ago and advice that I was given in such a short space of time has really helped me alot. Knowing that there are alot of people out there with similar problems really puts my mind at rest. Feel more enthused to challenge my GP and the Cardiologist to get me on the correct medication.

  • Thanks for the info on sotalol Tim. I can't tell you how much better I feel about things having shared my fears with you all. You are all so caring and supportive - I so wish I'd found you earlier. Having been given some tips on what to read up on plus listening to everyone's stories is better than any medication. I didn't realise that AF can be managed and that it can at times be sorted. I also hadn't realised that a cardio version doesn't necessarily last as no-one had told me that. I've got to be in charge of this rather than it be in charge of me! With your help I'm sure I'll reach that goal. I'm going to take a leaf out of your book giddytdi and question my cardiologist about my meds as they do make me feel a bit weird! Thanks :0)

  • Hi HMW i realy feel for you because you are going through the same thing i went through when my atrial flutter was ablated succesfully but they discovered the AF which became very persistant and i have had many attacks which scared the heck out of me , i have had one ablation in London Heart Hospital which was a success for a time but symtoms returned so my electropysiologist is sending me back up to get the little bits missed ablated , i just would like to say i am no longer scared by the symptoms or having the ablation again it worries me yes but i know that the flecainide,bisoprosol, and warfarin will keep me stable untill its rectified , basicaly HMW try not to worry we are all in the same boat and finding this site has worked wonders for me we are all on here for each other , take care .

  • Hello everyone, I am quite new to these forums but have been reading and learning for some time although have not before taken part in any of the discussions. However, I have found this thread particularly useful and finally feel that I can add my "tuppence worth".

    The initial diagnosis is particularly scary and like HMW 1953 this is particularly so when it comes out of the blue. In my case my optician (yes really!) first noticed a problem and referred me to my GP who having carried a few tests sent me to see a cardiologist who noted that I had a murmur and possibly some rhythm problems and arranged more tests including one (I cannot remember what it was called) where electrodes were placed in an artery in my wrist to examine the heart internally. During this process I went into violent tachycardic AF with a pulse varying between 120 and 200. It was explained that I almost certainly had had AF for some time but an attempt would be made to do a cardioversion to try and get back to a sustainable rhythm. Whilst waiting, I was put on drugs to control and assist including warfarin, bisoprolol and digoxin. three attempts at Cardioversion failed but finally an internal cardioversion at Oxford John Radcliffe bought back some semblance of normality.

    I found that once I had, with the help of the anticoagulation clinic, achieved a stable INR that warfarin was no problem. The secret seems to be a regular diet and a good routine for both meals and medication.

    Unfortunately, permanent AF was not the only problem as the murmur related to faulty heart valve whose condition deteriorated badly and I had an Aortic valve replacement and other open heart surgery early this year. Unfortunately this kicked whatever trigger controls my heart rate and put me back into tachycardic AF at around 160 bpm. Drugs which now included Amiodarone as well as the previous cocktail reduced this to under 100bpm and I was discharged, only to return some 4 weeks later with runaway heart rate. A pacemaker has been fitted and I am awaiting advice on whether ablation will be needed, although at present medication and meditation are controlling my heart rhythm most of the time.

    My message is that no matter how scary it seems, and it does at many times, that once the problem is known there is something that can be done and that will be done. Despite the AF I now feel 10 years younger than I did and can see my life improving and that is something that suffers of so many other diseases cannot.

  • How have you been since having the pacemaker fitted? is this the Pace and ablate procedure. Have you found any improvement in your Af symptoms. arrangements have bee made for me to have this procedure early next month, not happy about it:( have been passing out. I am currently on Amiodoron

  • Just over 8 weeks now. I believe that pace and ablate is the term I have heard used but my main concern has been getting some improvement in symptons and that is an unquestionable yes! Like you I am on Amiodorone for rate control also on bisoprolol and warfarin as well as the usual cocktail of diuretics and other drugs.

    If they have recommended it I say go for it, it certainly is changing my life for the better.

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