Hello I'm new hear so stumbling in the dark with tablet and the dreaded AF. Why me and why now is what I want to no , just been diagnosed , and scared witless when it kicks off all logic goes out the window and I'm waiting for the bang . Been told its not gonna kill me but its so hard to keep a grip of your emotions
AF and scared: Hello I'm new hear so... - Atrial Fibrillati...
AF and scared
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stevee
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Felt the same when first diagnosed but now at ease with it. This is a good site for support and although it might feel like the end of the world as you know it's not, there is a path to manage AF and get your life back. It's important to get yourself referred to a electro physiologist as soon as you can and on the right medication and an anti coagulant if you need them. But read all you can on AFA site as that should reassure and help you find the right treatment path.
Hello stevee and welcome to the forum. We have all been where you are - scared and wondering what has happened to us but AF can be controlled and you're right, it doesn't kill us but it feels like it sometimes.
As you have just been diagnosed, I assume you are still having tests done and that your AF is intermittent (paroxysmal)? Two things are important in helping you to cope with the condition - knowledge and a good cardiologist specialising in heart rhythms - called an electrophysiologist or EP. To learn about the condition and its care look on the main AFA website at atrialfibrillation.org.uk and try to get to see an EP for advice on the best way forward.
I know how fearful episodes can be and I found it helped to lie down on my right side and breathe deeply until things returned to normal. Some of us read, listen to music or audio books or use meditation and other calming techniques to control the anxiety.
Finding this forum is a good step forward as there are so many helpful and knowledgeable people here and you can always find someone to help and answer questions.
Keep well
Thanks for the advice, have a good cardiologist ,and now waiting for more tests , is it only me but when it starts and gets really bad I find myself unlocking doors and looking for the car keys, as I live on my own I just get gripped with panic I was told by my own doctor when you feel it coming on take the dog out and stay calm. yeh right
Hello Stevee, you are not alone, we have all been there. Now that you have found the forum you will find overtime, that your knowledge and understanding will improve significantly and you will come to terms with your condition and find out more about the right treatments for you. There are many folk here that will help you through this. I remember seeing my GP in the early stages - he said "what are you worried about, your heart is not going to stop" to which I replied, YOU may know that, but nobody has told me. His face was a picture!!
Checkout on the AFA webpage to see if there are any support groups near you. I remember my first meeting with fellow sufferers well. They didn't have 2 heads and were leading normal lives. Overcoming fear will not be easy or quick, but it will happen.
Best wishes
These lovely people have said it all.
Your Dr ..well its easy for him/her to say these things.
But you are the one going through it.
I oanic terribly.
It will be one year for me next week and without this site. Well j dont know what i would have done.
Not an easy tome for you. But nake sure you get correct meds and that you het to see uour consultant and Arrythmia nurse.
All the best
The worst thing about any condition is not knowing what it is and being undiagnosed. Now that you have a diagnosis and you know what it is, you can get treatment and start sorting it out.
It doesn't stop it being scary though and of course it's frightening. You will learn to try to relax during an episode and wait for it to pass. My episodes started very infrequently and were short but they built up over time until I had them every 9 days or so for twelve hours, usually over the night. I learnt to accept that they would pass and I even learnt to sleep through them. That was more than 10 years ago. My treatment was amended and the change stopped AFs completely - that was 7 years ago.
Medication and treatment have improved since then. With the right doctor you will find the treatment that will stop the AFs. Try to be patient, there is light at the end of the tunnel, you aren't alone in having this, it will be ok.
I was diagnosed nine years ago and it doesn't appear to have got any worse. Since my medication was changed two years ago to Rivaroxaban my coping mechanism has improved. The only change to my life worth mentioning resulted in my decision to completely give up drinking alcohol which resulted in my social life having to be significantly rearranged.
You don't have to change your social life one iota just because you don't drink. I still go out to the pub but I drink soda and lime now.
I don't expect the following is true. Apologies if it is a bit blunt. If the people you were with are just random people wanting to get bladdered then are they real friends?
What I hate is you can't get away from it - it's inside you. But I find over time I have practiced keeping calm ( It's not life threatening is my mantra). Learning to control the panic and the episodes are definitely getting better. Just hang in there xxxx
Hi I know exactly how you feel- I felt the same when I was first diagnosed. Try to relax and take your mind off it ( easier said than done, I know!) as anxiety makes things worse. I found that once I accepted that it is what it is, and it is pretty horrible, I could then also accept it isn't going to kill me as long as I'm on anticoagulants, and that makes me feel better. Find out all the facts about it too. Things do get better and easier, honest! Keep using this site - it is a great support.
I have had AF (paroxysmal) since my 20s - I'm now 50. I still get scared during episodes, but know the more worked up I get, the longer the episode will persist. I've tried everything, from exercise, to yoga to halt an episode. Sometimes it works, sometimes it doesn't. Lie down, read a book or try to nod off to get your mind off it and it may go....and don't wore that you're worried, at least now doctors don't take the condition as lightly as they used to.
I understand how you feel. My AF started 14 years ago. I took flecainide for 10 years which kept it well under control. In October 2914 it started again. I had an ablation in March August and December 2015 since that time no AF for which I am truly grateful. Modern medicine is fantastic. Its not easy to be rational with AF you are not alone in feeling like you do. Its always the thought "what if it comes back" im sure things will get better for you as time goes on. Be brave and keep in contact to talk about how you feel.
Carole Milner
Welcome, I just want to let you know that we are here for you, it's scary and every time I get it I wonder if it will ever stop. There are loads of people in this group that will give you loads of help and advice. Main thing is your not alone Denise
Hello and all I can say is thank you ,I do understand the workings and what is happening inside me its the emotional side I struggle with , my kids know when it starts as I go quiet and withdraw I'm naturally an outgoing person but this thing makes me feel sometimes isolated . Its nice to hear from others and you realise hey I'm not the only one and there are many worse things out there.its nice to find other human beings, fellow sufferers who take a few minutes of there time to offer a bit of support and advice to a total stranger thank you again faith restored x
Hi,
This is my first post.
I have had Afib but unknown for about 5/6 years. Did not realities or digest it when first told and put on warfarin. Had heart valve op in Jan 2016, this year, op was Ok have tissue valve, but afib went bananas in ICU. Still cant control it, had Amiodarone and Bisoprolol. Got stopped Amiodarone about 6 weeks ago by cardiologist but Bisoprolol upped to 10mg. 5mg in morning and 5 mg at night. No have thyroid problem because of Amiodarone and all the iodine in it. They never told me anything hospital about Amiodarone. Thyroid affects pituitary gland so sleep goes out the door and the afib is worse. I keep a sleep diary. If you really want to see how little sleep and my desperation then please ask and let me have your email. I am desperation I have threatened to take my own life, started self harm but only got my poor wife, who is not in best of health to listen and she is finding it difficult. I just wish had someone on end of phone line even to share and maybe help and understand.
Any thoughts appreciated
Norm
Norm, repost this as your own post (not in answer to Stevee) - there are lots of people on this forum who give great comfort to fellow suffers and who can empathise with what you are going through.
Norm I would go back to your Gp and ask to see an EP also explain to your Gp just how low you are feeling there are professional people that are trained to help you with these things. AF can be treated either by medication or ablation you just have to find the right treatment plan for you. there are and many people who lead a full an active life even with AF so don't give up
Hi, and welcome to this forum. I was diagnosed 7 years ago with PAF, and although on meds I still get attacks, probably 3 or 4 a year. When I first had an attack I was rushed to A&E on lights and sirens, that was very scary, but they just left me in a corridor on a trolley until I reverted. These days, like the others, I try to relax, and wait for it to revert at home. I am in the middle of an attack at the moment, its in its 4th day, but it will revert when its ready. Be calm, and relaxed, it will help you cope better. x
Hi there stevee. As you gain experience with AF, it tends to become tedious rather than scary and less bothersome. There are many ways to gain control over it and stop it plaguing you, so do take note of the wise words you've already been given here.
Why me is such a good question and lots of us ask it but the answer may not be so obvious. Some of us do know - a lot of endurance athletes get AF. I don't know what I've done but I suspect drinking too many cups of tea (especially stewed tea) over many years. Lots of us AFers avoid caffeine as it can be a trigger, and the same goes for alcohol and some foods We are all different and if you can identify your own triggers you can avoid them. Eliminating triggers does not cure AF, but you might see some improvement.
The sense of panic is something most of us know all too well. Whenever my other half was away, I made a point of having a phone and the keys of the house to hand overnight, plus a suitcase of useful things packed in case I get swept off by an ambulance. I realise I've not sorted the suitcase since I got back from holiday.
So, welcome to our world and be encouraged because it gets less scary and the panic will subside.
PS I think it's worth noting that, while we all have AF, for some of us it's the only thing we have and others have it along with other conditions and their situation is more complex. Some of us have AF all the time, others get it occasionally. Some people are laid low and others find it doesn't affect them much. Some of us have been having treatments for years and lots of people join the forum when first diagnosed.
You are in the right place here, this is just a welcome as you will get lots of advice on this wonderful forum. It's been 15 years since I started this lovely journey, lots of ups and downs but I am still here. Try not to panic when you get an episode and if your HR Is not too high just ride it out in the knowledge that it will stop. I put the light on sit up and either listen to a talking book or play games on my iPad. This helps to divert the mind and stop the panic. Stress is not good. Best wishes and I hope you get a good plan sorted soon.
Brenda🐝
Thank you Brenda, am trying to take on board the good advice offered by the good people on this forum, pacing the floor at night is not ideal, we all have different methods just to deal with this , have to change my mindset as shear blind panic is wearing me out
Hi Stevee,
Know what you mean. I never dreamed that I would have heart trouble, but I think I have come to terms with it now, thanks to a very supportive family and an excellent clinic who are monitoring my daily warfarin readings. Just have faith and remember that this forum gives fantastic comfort and advice.
Hi Stevee and welcome to the forum...many of us have been where you are and had the "why me" feeling I'm sure...I will not bore you with my own experiences but please try and stay positive there is no one size fits all remedy for AF...many thousands of people are carrying on with their daily lives totally unaware they even have AF..and you will find your own way to cope with all that is AF...there is so much great advice and support on this forum for whatever direction AF takes you...
Heart trouble and I always though id be invincible and untouchable but at 56 I think it might be time to slow down .its strange how your body reacts was taken in last mon with my heart doing its usual a fib workout the nurse caught it but as soon as they wired me up for my ecg bang normal rhythm ,no sooner had they took them off it was like someone was moving furniture why
Same with me stevee - a terrible shock to realise that we're not as invincible as we feel sometimes. It is weird how going for tests and getting wired up to an ECG machine causes the heart to behave, then when we are alone - away the bag of ferrets go again!
I had PAF for years before finding a doctor who could prescribe medication. I had episodes that lasted about 12 hours. Then started taking flecainide if I had an episode. This would stop it within 1 to 4 hours. Stopping it quickly is recommended to prevent its progression. I am 60 and had an ablation in March. I've had three one hour episodes since having the ablation, so uncertain whether it has worked completely. I think you should be prescribed drugs to stop it. Need to ask doctor and find a new doctor if he doesn't know what to do. Some GPs are clueless.
Stevee. A says of my father's is so apt. You are at where you are at. You can only move forward from this point and you can only look back to help learn / decide the best way of moving forward.
There are no magic medicines or procedures to guarantee success at any particular stage. In essence you have to suck it and see.
You will learn (if you haven't already done so) that AF is a truly mongrel affliction that affects different people very differently and, more importantly, can affect the same individual vastly differently from one day to the next.
Don't beat yourself over the past - you had good times at the time. Yes I wish I had seen the doctor sooner but I was pretty much asymptomatic. The symptoms that I now know are AF early days were put down yo other things.
Good luck on your new journey.
My new journey starts today at this point me dad always said life can be really tough the trick with it is just keep breathing anything else can be fixed reading comments on this forum have really lifted me being cut of when you feel like iv been feeling is well its pants thank you xxxx
One thing id like to add should I be on12.5 mil of bisoprolol was told this was too much x
Sounds high, I found I couldn't tolerate 5mg - got muscle fatigue and very breathless even walking on the flat.
Go to the AFA website and read the drug leaflets and start to understand what you are taking and why AND what the side effects and the alternatives might be. We AF'ers need to become our own experts as many of us end up as informed (and occassionaly more informed and certainly experienced) as some of our GPs,
Hi and welcome Stevee. That does seem a large dose, normally it is started at 2.5 and gradually increased, I thought that 10 was the highest. I am on 5 mg a day cause if I take higher than that I feel awful. I do have to take Diltiazem as well. You should double check with your GP or Consultant. Also if your nomal h/r is lowish watch that the Biso does not drop it down to low, I donn't need to worry about mine is always high, Im in pemanent AF.
Cassie
Stevee , when I was diagnosed cardiologist put me on 10mg Bisoprolol for about 5 weeks, it can leave you feeling tired and groggy . In time you will learn to live with AF and find different methods to help control it, watch what you eat ,for me different additives in food causes me to to go A F ,take care and try and relax Brian.
Thanks bud think its sleep with me, will talk to my cardiologist have app on the 12july
Stevee. From what's been written I am gathering that you have been on 12.5mg for a long time now? Is that correct? How long and was it straight onto that dose or built up in steps? The norm I understand is to go up (or down) in 1.25mg or 2.5mg steps (1.25mg in my case). However if you have been on it for some time then so be it.
When do you take the Bisoprolol and what other medications are you on?
Do you monitor your own BP and / or HR with proper devices?
You say it comes on at night. Is that always, mostly, etc. Do you keep a log?
A few possibilities spring to mind. Is it food triggered and or is it eating late in the evening. Another is is it vagal AF (some consultants and GPs don't acknowledge this. There have been quite a few posts on vagal AF.
If he is an issue then ask why aren't you on a lower dose of Bisoprolol and something else such as an ace inhibitor, digox, etc. However note that some drugs like digoxin, etc, etc are not appropriate for some conditions / people.
Is your consultant an EP or a general cardiologist? If NOT an EP does the hospital you are going to have EP(s) - some hospitals have visiting EPs who do consultations there but do ablations at their main hospital.
A lot of questions but trying to see the wood for the trees.
Hi ...i have had this for just over a yr now...spen a night in hosssy last sat..very fast af agen...been offered abaltion...have to go and see arythmia team to discuss it....am very apprehensive....its a bloody pain..all this....am not doin to bad on meds what to do next...i ask myself.
Its been over a year now and I've felt like crud everyday tired and with really sore muscle pain I'm still a hundred mile an hour guy ,its only since I came on hear and talked to you guys that I've realised what I've been putting in my mouth spoke to my doctor dozens of times might have well talked to a head of lettuce its my own fault I suppose don't like reading the notes on what I'm taking I did once when I had hiccups for a week and it said could cause instant death lovely eh . knowledge is power I suppose
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