I have been in bed 18 months terrified to move in case my heart stops. Ive had two major af attacks but all day i get palps. I dont go out, wash, and keep a loo in my room. Im so afraid i buy valium online. My life is dead. I used ro do karate, ride . . I feel like an old woman and im 40- ok thats not young but i feel 89. I cry all day for my old life. Ive lways had palps since my early 20s but then 18 months ago i had my first afib attack that was the most horrific thing ive ever had. I thought this is it im sying. The hospital,was 43 miles away and i was petrified. They just sent me home and said i was a panicker! I felt like choking that nurse. Then 12 months on i had another - same result . I wont take flecanaide as my GP warned me it can cause fatal arrhythmia's ( cant spell it!) so i didnt want that worry. Then ive been on bisoprolol which does nothing much apart from make me feel like i have a hangover n i cant walk up stairs without gasping. Its odd my palps are evey day now but before they was once in a while. I could handle that although i was still terrified when they happened, i has two blood transfusions 9 months apart due to severe anaemia and since the second one my palps have gone terrible! Is it possible i had someones blood who died of heart disease..? Im so sad and lonely and i want a life. Two beautiful girls who need a happy mum not a shaking messs who looks like an anorexic tramp. Im even afraid to go to the door so the postman has to throw my mail through my bedroom window. I weep when i see older people jogging or people walking past and happy. Is God punishing me for all the bad i did? I dont know. My gp is always a different one when i go and they are snappy and all fed up with me and are rude as they say it wont kill me. I paid for an echo and heart chambers ok but tiny valve leak. They say everyone gets palps - well iknow at least a thousand people in my life and they dont get it so thats a lie. Im afraid and written my funural plan and told my partner what songs i want. Our plan as a family was to move ro ibiza but how the hell could i fly( im petrified of flying as it is let alone having palps n afib on a plane). Can i walk? Do my karate even though im so breathless? Is it dangerous? I dont mean ro sound selfish but i cant cope any longer... Bless you all xxxxx
Help me: I have been in bed 18 months... - Atrial Fibrillati...
Help me
Hi there,
I'm so sorry to hear of your situation but you have definitely come to the right place - there are lots of folk here who know about AF fears.
I'm sure the experts will be along soon, one of them - the excellent and experienced Bob always says firmly to remember that AF WON'T KILL YOU. It's true, it just feels like that sometimes.
Have you read all the information on the AF Association site? It can really help.
I have learned to live my life well even with AF and I'm sure you will do the same, I wish you peace and wellbeing,
Best Wishes, Jane
Thank you ..... Thank you for replying.. Such words of comfort so bless you xxx
Oh dear, you definitely need some professional help as well as support from the people on this forum.
We have all felt alone and scared and irrational at some point in our A.F. journeys but most of us have eventually come to terms with it enough to lead happy and fulfilling lives. Sometimes though, our brains blow things way out of proportion and it is then that we need expert help or risk going round inever worrying circles.
You must understand that you are not in any immediate danger from A.F. although episodes are scarey, they will pass. Staying in your house and worrying will be making things much worse.
Make a doctors or consultants appointment and tell them exactly what you have just told us. Take someone with you who can back up what you are saying.
You will feel a bit better when you have taken back some control over the situation and then you can start to deal with things rationally.
Trust me when i say that we all understand how you feel and because I do Iknow that now is the time for you to start helping yourself and the first step is to tell your doctors how you feel.
Please let us know how you get on. X
Thank you! I have told many doctors but they say I must just live with it but it has taken over my head - its all I ever think about. Its like im so convinved it will kill me I cant help myself. You have all been so very kind and I feel safer knowing youre all there. Thanks for the reply x
It sounds as though the initial attack has left you traumatised. That would be the cause of continuing fears that are robbing you of the life you want. PTSD is a debilitating condition. EMDR ( eye movement desensitisation and reprocessing) can be extremely helpful. It is recognised by The World Health Organisation, NICE in the Uk and many other countries including the USA. I would recommend it. I have had a heart attack, have PAF and am just off to the gym now. It's possible. Do get some support for PTSD if you can. Feeling constantly 'under threat' is a strong symptom of PTSD. Best wishes
Hi Terrified and welcome to the forum.
Oh boy you've had some iffy advice, and worse some people put ideas in your head which are just plain untrue.
OK deep breaths let's go.
You cannot get AF from a blood transfusion
Flecanaide is a useful and widely used rhythm control drug, yes it has side effects but no worse than any other powerful drug, it's very common and many people are taking it.
Having AF attacks is very scary, I've only ever had one in my life and it terrified me, I did the same as you, planned for my death, wrote letters to my chidlren, etc etc, but now I am in AF 24 hours a day 7 days a week, and guess what? Life is just about normal I do whatever I want to do.
But you are going to need help now, I think you've worked yourself up into a real tizzy over this.
Let's try and start at the beginning.
AF will not kill you
I am going to repeat that
AF will not kill you.
I know you don't believe me but it's true.
You probably won't believe me for several months, but you will know in a couple of months that I am right. If you don't believe me ring the AFA helpline on 01789 867502.
OK you need to take YOUR life back, and that means some steps.
First you need to see a specialist, go and see your GP (whoever it is) and insist on being referred to an Electrophysiologist. (EP)
In the meantime, start learning all you can about AF, start at the AFA website it will give you loads of informations about the condition, and above all help you be calmer about it.
What part of the country do you live in? There are many groups who you could go and join or turn up and talk to fellow sufferers.
Above all please remember you are not alone, we have ALL been through what you are going through, the terror, the nighmares, the downright depression. But believe me we all come through. There is no reason at all why you should not move to Ibiza and get on with your life.
Be well
Ian
One thing that I would add to / correct in Ian's post is that we ARE all going through it in one way or another. It is only a small percentage on this forum who don't have AF. Admittedly some worse than others. It also affects different people quite differently and importantly can affect the same person quite differently from one day to the next.
Quoting a favourite saying of my father's "life's changed not ended". He even said this when diagnosed with terminal and given a year to live.
Easier said than done but chin up.
Thanks Ian- i did see a specialist who deals with elecro problems in your heart privately and I think he felt so sorry for me he never charged me! He sent me for an echo and I think if I didnt live 40 miles from the nearest a&e dept id try flecanaide- i live in very remote Cornwall, theres a little minor injury unit in the town but thats it. I know i need ro get my life back but Its the fear. One gp gave me zantac- the hospital actually laughed at this! One gave me anti depressants, one gave me warfarin which I was glad to have but another took me off it. One gave ne omeprazole as i find if i eat ( hence im so skinny), i had a lot of reflux which made the palps worse. The pharmacy at the surgery ran out of bisoprolol so they gave me. Another drug which shot me into the worse case of a weird beat ive ever felt. This was done with no discussion- just a decision by the pharmacy in the surgury who think theyre surgeons! And the last one gave me something for hayfever... I think i would be safer seeing a vet. Its so comforting knowing you are there but so sad tou are in afib so much, my heart goes out to you as its such a demon to have.. And that wasnt a pun so pardon the expression. Cornwall is like living in the 80s. I think theres a coffee club for old ladies with heart and bladder probs in Redruth which is around 68 miles away. Many a time i have driven that 40 miles and slept in a&e car park. I feel silly saying all this as people like you who deal with it and theres me wittering on. But thank you and Im so glad to you all for bothering to reply x
Hi Terrified and really glad to hear from you.
I know cornwall is a little remote, but there is a informal group which meets regularly close to Exeter (I know over the border and they eat their cream scones wrong 
) It's run by BobD who is very a very experienced volunteer in this forum, and I know could help you and give you back some confidence.
Horror story about your surgery, that's awful, but can I pick you up on one thing. If your EP wants you on flecanide, then listen to him/her. It really doesn't matter that you are that far away from an A & E department, it's by no means one of the worst rhythm control drugs, there are some which are much worse in regards to side effects. Many people carry "flec" as pill in the pocket if they get an attack.
And you are by no means "silly" I promise you that in November 2012 when I had an attack I was just like you, I thought my world had come to an end. I wrote a new will, I came home and started putting my affairs in order, I left notes for the children telling them where to find things, and I made so many mistakes in those first few months.
Then I found the Yahoo forum for AF, which was the one before this one was founded (this one is much better) And lots of really caring people there gently persuaded me that I was not going to die, that I could get on with my life. But did I listen? Nope, I'm a big intelligent man, I bought heart rate monitors, (they said don't it makes you focus on the problem) Everything I read I only ever saw the negative in. It took me months before I realised that BobD and others really did know more about AF than my GP (not hard for most GPs believe me) That I was going to survive and thrive. And that my life would get back to well a different normal.
You've got kids at home now 2 beautiful girls (I had 3 so know exactly what you mean) I promise you that you are going to survive and thrive, you won't agree yet. But you will
Here for you anytime, not just me but all of us.
Be well
Ian
This is your new medicine Terrified40. Read Beancounters advice daily three times a day, until you can identify your next moves.His advice sounds so good I would even offer him one of my 10 ginger cat lives......just to cheer him up when he is down. and remember that is a ginger cat!
So many thoughts like ive got you have all had... I cant thank you all enough.. Forgive me if i forget to thank someone personally, it doesn't mean your comment or help wasnt right for me- im just taking my time reading and taking it all in. Such wonderful people to help me especially as you have enough on your own plates. Like you said Ian, its like there's nothing to get up for but fear, totally negative thoughts and no future... Xx
So sorry to read all this, but what good advice you have been given.
Hello there...please read what Ian (bean counter) has written again...and then read it AGAIN......and again!!
Truly we have all been there, the fears etc.......the first thing I did after diagnosis, was rewrite my will and my last wishes for my funeral. and I am sure a lot of us still have bad days......when the old anxieties creep back up on us...
it seems hard for non sufferers to understand...but believe me you will get so much support on here...from people that DO understand. I have made a local friend on here who I refer to as my AF Buddy...maybe you could make contact with someone in Cornwall and be brave enough to meet up for coffee?
Keep talking...i am sure it will help x
Please don't be terrified any more, you have found this site and there are so many lovely people on here to help you, answer your questions and also help you get through this. You can and you will feel better!
I know how you feel, I was so scared when I first got AF and frightened of taking new medication but I did. There are thousands of people taking Flecanide to help control their AF.
look forward to the day when you can fly to Ibiza and maybe come back on this site and help someone else by telling your story. To many of us are not living our dreams because we are living our fears. It sounds as if you've got some lovely dreams, make them come true.
Hi yes there so right we all know what your going through but you've got to take heed of this because as they say it won't kill you but your worrying will I have af all the time it's hard at times but you will get through this please take the advice because they are right it's hard but it will be ok xx
Beautiful words 🌹 Thank you souljacs4 - my heart is beating weird right this second.....
Yes, do get more EP consultation. But sounds like you might benefit from a professional who can help you sort through the life complications mentioned above. Just throwing antidepressants at you is not the solution. Look for someone who has a specialty advising people with medical complications and severe anxiety. Keep us posted.
When I first got AF . I panicked and bought myself heart rate monitor and the pulse rate monitor too, I was checking my heart rate all day and started imagining all sorts of things when it went right down to about 35 or so . I often went to the hospital to see the cardiologists who kept telling me not to worry, and I finally ended up in the emergency department the hospital. I got a good talking to by the doctors there, and was told most of my problems were anxiety and panicking. They finally convinced me. I stopped worrying, stop taking sleeping pills, put away my heart monitor and only check my blood pressure morning and evening. I have reduced my stress by doing breathing exercises too and all I can say is that I'm very much better.
I have been on Flecainide for a few weeks and have terrible stomach ache now. I am also on Bisoprolol and Riveroxiban. Does anybody know if any of these drugs side effects cause stomach problems?
regards
Hello,It is said "life begins at 40"I will be 75 this year had af for 17yrs now,and still going strong,out every day,Volunteer three of those days and love life,and a lot more than A f wrong with me,anyway this is not about me.
If I were you I would flush the valium down the toilet now,this is what is giving you panic attacks I know I've been there,and have never looked back since I flushed them down the toilet!!!when I was 40.then insist that your GP makes an appointment to see an Heart Consultant that runs an Atrial Fibrillation Clinic.They are fabulous doctors and I can phone mine anytime,within reason.GP's don't seem to know a lot about AF.I have P A F which means I do not have it all the time,when I have an episode I wait 10mins take 300mg Flecainide and within 40mins to 2hrs my heart goes back to normal and I get on with living and don't dwell on it.REMEMBER!! I take this medication Dose for me which has been prescribed by Consultant at the af Clinic,so don't try this at home,please go and get help tomorrow and start a new life,think of your poor husband and family they're lives will be worse than yours.Remember you can only want to help yourself.
Please let me know how you get on, write anytime you want talk to me.I hate not being able to name you as I write,who ever you are,please talk to yourself and get it into your head that you will do this and only you.
Thinking of you,
Eleanor.X
I
Bless you xxxxxx
Thank you.
I would add that it is normal to be frightened when faced with this condition. However your level of fear seems to be crippling you and stopping you from dealing with your AF and leading a reasonably normal life. So I would ask your GP to refer you for some counselling to help you get a handle on this. Lots of people on here have had help to deal with anxiety and it can be a very common part of AF.
And listen to beancounter.
🍀
Hi , reading all that has happened to you I really think in order to even take on board the advice given to you on here firstly you need some help to manage the anxiety you are surffering.
You have got yourself into a place it is very difficult to even contemplate getting out of.
The more anxious you are the more impossible the situation gets.
AF, as people are saying is not nice it's complicated to manage for a lot of people but it's not a reason to have to reduce you're life to this level.
I hope you get the support you need life is precious with or without AF.
I manage by dealing with it when it's there and living life to the full when it's not and that's as much as I can do, but I realise we are all individual and have different views.
Good luck
Hi Terrified40
I would be interested to know how and when you came upon this forum, since you have been suffering for so long. Have you been reading posts for a while and plucked up the courage to ask for help in your increasing desperation?
What most people have said to you thus far is true, as far as it goes, and according to their own experiences. We all have experienced varying degrees of panic, anxiety, low mood and erroneous thinking, until we got ourselves educated on this subject. It has then taken us varying amounts of time to come to terms with our diagnosis, and, possibly with the help of loved ones and kind & knowledgeable heart doctors, most of us have probably managed to assimilate most of the conflicting issues around AF, e.g. risks and benefits of medications and treatments, and come to some workable compromise of how to live with this condition, whilst not letting it take over and ruin our lives.
What I feel no-one has managed to address incisively for you so far is the fact that you haven't in any way come through the process that I have just outlined.
I think you can be sure that if any of the forum folk had been as debilitated as you have been, and continue to be, and for such an awful long time, with no signs of your 'coming to terms' with it, they would have said so.
I can see what a desperate state you are in, and my heart bleeds for you that you have not been able to illicit the right kind of help from your local health professionals.
What you are suffering from is not only the physical condition of AF, but also an extreme anxiety & phobia (ie IRRATIONAL fear) of health issues, which your brain perceives, could kill you. This is what you desperately need some professional help with. Psychological therapy which challeges your thinking processes, and gives you the tools to discern which thoughts are not 'truth', and must therefore be ditched in order to help yourself, is a must.You will learn ways of stress control, and how to 'soothe' yourself. This is a therapy that takes some time as it is about changing our habitual thinking, bit IT WILL HELP YOU! Taking anti-depressants usually goes along with the psychological help, although they're only prescribeable by a doctor.
This is not your fault in any way, it's not a flaw in your character. It's as real a condition as if you had a broken leg. It's just that there's not much for people to see except your behaviour. And believe me, taking to your bed and not being able to cope with yourself, let alone your family, is a real condition that needs help. I feel for you so much and it is tragic that no medic has apparently spotted that this is what is going on with you and got you the help you so badly need.
Go to your GP (with husband for moral support) and, as calmly as you can, insist on being referred IMMEDIATELY to the Psychological Services that your Health Authority offers. Don't be afraid to tell them how badly you are functioning and how you have NO quality of life at the moment. Sometimes you need to mention the right 'buzz words' to make them prick up their ears. There may be a waiting list (they're usually is) but your DR could get you started on an antidepressant in the meantime.
You will come through this and get your life back, with the right help.
I know what I am talking about as I've suffered with an almost life-long fear & anxiety of health issues, and death (I'm 62 now) which has never gone away, but is, to some extent, under control thanks to various sessions of psychological 'cognitive behavioural therapy' throughout my life, also delving into possible causes (and thereby understanding) of this debilitating anxiety. I have taken an SSRI (modern anti-depressant) on and off for the last 20 years but am now on them for life, along with my warfarin and other AF meds. My very knowledgeable and kind GP will give me valium, just to take when AF strikes in the night, as my anxiety wouldn't usually let me get back to sleep.
This is the 1st and only step you need to make RIGHT NOW. If you can begin to get the stress under control to some extent, I'm sure the palpitations will subside somewhat as the stress is almost certainly feeding them just now. Perhaps when you're feeling a bit better stress-wise, you might feel ready to address the drugs/treatment plans for your AF.
Sending you hugs and all best wishes
Helen x
Hi Helen and terrified.......what a supportive and informative response you have given "terrified" as well as all the other responders. Ian, your information and feedback is calming and so supportive. Helen, You are coming from the psychological end of the effects of afib. It is truly something that can cause PTSD and for sure counseling and antidepressants can help. Depending on who you are and what your psychological wiring is, afib can be extremely debilitating emotionally. It has been almost a year since I went into persistent afib and my world fell apart. The medications made me Ill to point of not being able to eat and losing lots of weight. I did have an ablation last September which gave me my life back but still do fear it coming back. Once experienced, it pretty well stays in back of mind. I do counseling, meditate and do mindfulness. The emotional impact cannot be emphasized enough. I hear your terror terrified. If you want to private email me please feel free. It does get better ......there are choices for you. There are so many caring informed people on this forum.
Im so sorry I cant reply to you all but this site-well the wonderful people on it is what Ive been looking for! Real people who have had it, been through it and are still in it... Progven I just came across the site by tapping in something like terrified of dying from afib and palps or something. I tried ringing the Afib association but when I asked the woman if she herself had it and ahe said no so I hung up- her tone didn't feel like a voice I could talk to and how could she know how I felt! I have told my GP, all of them and my cardio but they seem to say the same words "oh dear, what a pickle" or other patronising statements! Or just say take the flecanaide and if you feel ill pop back... The Afib attacks as in the really fast beats are quite far between or the drug has stopped them compared to some of you poor people but the skips and feeling like when you trip or meet a lorry on a corner while driving and your heart flips are the ones I get most of the day. Eating makes them worse and pardon the revolting explanation but i get a lot of sicky reflux which Im sure causes some of them. Im on Omeprazole but it still happens. Ive tried the iced water and every other remedy and thing thats meant to stop them but they don't work. I dream Im running and fit and healthy- I wake up and sob as its not real and I so want it to be. I used to be able to deal with the palps as they were nowhere near this bad and was on no meds until my first Afib attack n since then theyve got so bad- Ive discussed ablation with my cardio and have an appointment in May. Im afraid to ask to see a professional for help as they may say I can't keep my girls - i hide my fear from them and as soon as they get on the bus Im shaking and back in my bed. Even writing this Im having weird beats and checking my pulse which seems a little slow. I can't thank you all enough for the words coming from people who really know what they're talking about, not some patronising GP or cocky receptionist!
My dad dropped down dead at 62 from a massive build up of fluid under his heart which doesnt help. I had a pet who was my only friend, a pheasant who lived in the house with me as i watched her hatch and kept her. She died in my arms in September, I never felt such grief in my life. then my dog got killed, it seems Im surrounded by the grim reaper. I was training for my brown belt in karate and now I wouldnt dare do it in case I die. I think Im losing my mind but reading all the wonderful words you have all gave has made me feel maybe one day I won't die and I will feel like the old me. I wish I could wake up and this was all a terrible nightmare, but I wake up into a nightmare.. I am so grateful to you all.... Eliza2 youre right- my world has fell apart and shattered into a terrifying mass of terror. I would be less afraid if someone had a gun against my head. Im bitter, angry, want to scream WHY ME!!!!!!! Iget in rages and then im sobbing. Sorry to go on
💝💝
Whats the point in anything. Im so miserable i see no point in anything now. Ive just waved my daughter off as she wanred to go to an event n instead of me a neighbouring farmer took her and it ripped me apart seeing her getting in THEIR land rover. It shdve been mine.
Whats the point in being on this erth- i couldnt even Run down the field to wave ro her as she drove away.
Hello Terrified
It's Helen here again.
I can hear what an awful morning you're having.
Your GP needs to know that the omeprazole isn't working, and he/she needs to hear about how devastatingly your mental state is affecting your quality of life.
Just as Beancounter challenged your 'wrong thinking' by telling you that your past blood transfusions could not have contributed to your present AF and palpitations, I would also like to challenge you by saying that you are doing yourself a great disservice by keeping your anxiety/panic/depression/?eating disorder to yourself in the erroneous belief that otherwise your girls could be taken from you.
I know this is an issue for you, as you are ignoring my advice of yesterday to get immediate help from your GP, who is the only one who can refer you for psychological help and therapy. There is no shame in seeking such help, and is certainly not a reason these days to take your offspring into care.
I'm also sensing that,since you feel so alone in this, maybe your husband is not too supportive?
As a very short term measure, you are experiencing some relief to your isolation by finding empathic people on this forum, who recognise to some extent what you are going through.
However, in order to gain proper and longer term benefit (and I don't mean to sound harsh here) it is you yourself who has to make the first move by asking for help for the part of this tragic story that you are hiding from the very people who could help you.
And I reiterate: you CAN be helped to overcome your paralysing fears to become a rational, functional, happy individual once again.
The days of being placed indefinitely in a mental asylum belong to the past. For one thing, the NHS can't afford it, plus, it wouldn't help you. You are not a 'head case'. You're suffering from an incredibly common but treatable mental health problem, which can definitely distort your thinking at times. You need to lay all this before a doctor (just as Dedeottie also advised yesterday) and demand treatment that you both need and deserve. You have suffered enough already.
I'm so sorry to hear of all the losses you have recently experienced. It's small wonder that you are in such an anxious and dark place.
I am becoming a bit concerned, reading your last post this morning, that you may be losing the will to carry on, to some extent. Please understand that there is light at the end of the tunnel, but that you must take the first step towards it.
In the meantime, if things get worse for you, you can always phone the Samaritans to offload your feelings:- freephone 116 123.
Keep in touch and wishing you well.
Helen x
Please watch this video it's by a wonderful cardiologist who has made many videos on heart problems and greatly reassures you and will help you to understand what's going on. If you type Yorkcardiology into YouTube search you will find them it will change your life for the better. I have had this since teenage and I am now 69.
You are in a mess!!
Afib isn t an easy option. If you can pay to see an Electrophysiologist it could benefit you. The social ,psychological and financial effects of A fib are sometimes worse than the illness and GPs are not usually a fountain of info.
Research into A fib is progressing so fast that GPs haven t caught up on the whole. The cause is being researched I think ,and the triggers many.
Why not Ibiza if you can do it ?
I am taking flecainide and I am fine - just need more sleep. I was the same as you before flecainide and it has given me my life back. Meditation good. Plenty of water, no coffee,tea and no eating after 5pm. (I am not perfect-struggling but know what to do)
The main fear is death but we are all facing death-its the only sure thing we have-
try to do a little more each day.The Buddhists are a good source of support and putting life into perspective and helped me to overcome the fear of death.
A couple of years ago I couldn t even string a sentence together.Now you can t stop me. You can do it !!!!-a good book to read is Feel the Fear and Do It Anyway - Susan Jeffers
Dear Terriified, I do hope you are feeling better than you were this morning. Like others on here I feel for you and the situation you are in. If you have been worrying yourself sick for the last 18 months it's no surprise you are in this state and I understand how awful losing loved pets can be. You have to get immediate help from your doctor for your anxiety and depression - not just pills but talking therapy. And don't worry - there is no way anyone will take your girls from you. I suffered from depression years ago and was on medication for it - I had two school age children and it was never a concern for the authorities at all! I've only been diagnosed with AFib for just over a month and I panicked at the beginning too. I'm still waiting to see a cardiologist after my tests but this forum has helped calm me down and I am doing what I can to look after myself. If I hadn't found the forum though I think I would have spiralled into panic and anxiety. You need to get these things under control first before you can properly address your AFib, then like the rest of us you will be able to start coping and get on with the good things in life. I wish you all the best. Love and hugs xx Ruth
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