Im new to AF and really scared as Heart rate was 172 when rushed to A&E . Been rushed twice to A&E now nd had a diognosis of paroxysmal and put on bisopropol which make me breathless nd faint. ive been off work scared for 2 months now (well 6 weeks of that was school hols as I work in a school) but im scared to go back to work in case of intermittent episodes of Afib at any time, and the need to get out of class, also trying to have to constantly explain why and my condition to work staff. I just feel like I need to be around and talk to someone who understands and has this condition nd how this feeling totally knocks your confidence.just the thought is stressing me out. Help! , dont know what to do
Karen
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I am a full time teacher (english as a foreign language) in Japan and have worked for the past 2 years with almost daily episodes of AF and Flutter.
I used to go to the gents toilets and look at myself in the mirror. Despite my FEELING like death warmed up I had to keep reminding myelf I LOOKED NORMAL and my colleagues didn't have any idea I felt unwell.
In the end I had an ablation (5 weeks ago) and despite a few minor hiccoughs the results have been good.
Now I can't tell you what to do, but you can carry on living with AF. Life doesn't cease to exist just because of your diagnosis.
Its down to your strength of character and what motivates you to carry on.
I have a young family, daughters aged 4 and 7 and I MUST provide for them so I had to carry on.
If I was older, financially stable and had no dependents I might have given up more easily.
My mother had AF, and it killed her.
Not directly but after her diagnosis 25 years ago she simply gave up living. She quit everything she loved, walking the dogs, hiking and so on because she allowed AF to dominate her.
I watched her wither away and die after having given up on life. You dont want to be like that. You WANT to live, to have a life.
Sure, AF changes it, but it doesn't take your life away.
Do you know why humans are so successful in evolutionary terms? Because we adapt, we change to suit our circumstances and our situation.
I work in a college and had my fainting due to AF there. They were good to me. You need to say to your boss and colleagues what is the matter. You don't suddenly grow two heads to make you b distinguishable. AF doesnt have outward signs. I have been told so many times I look well when inside I don't feel it.
Carry on with your job. There may be times when you are tired and can't go to work so do what you can when you can. Stress isn't good.......ha ..and we are in education. ....
Use stairs. .dont move the furniture have your break . Im off now for the return to college. A very busy and stressful time but also enjoyable.
Great post Japaholic and so very true. If you let it, it will dominate your life. I realised this 23 years ago after first terrifying bout of fast AF . I had two young children and husband working in the Highlands but I had to keep going as there were people dependant on me. I still get episodes of fast AF but they now fit in as part of my life.........well, mostly !
Hello Karen, I was in your position 7years ago,but only intermittently ,but as I know now, that was the taster! ?Now I am now in PAF. I was booked to a flight to my son, but was too scared, it was a 13 flight. I cancelled, that was in May, The cardiologist is put me on the list for Cardioversion, but mean full, he said go on holiday, and will see me when back, that gave me so much confident, I went to Malaysia, and had a great holiday, still have irregular pulse, from 100/140, but drank plenty water, the temperatures were around 35deg, did what I was told and drank water till I was floating !!!
What I'm trying to tell you Karen, just hang on to all the information you get from this site, they have all given me so much confidence , and lots of us are so grateful , so thanks to every one of you, !!!
I read this advice over and over, every time I feel tearful, despondent and so alone with this thing. Cant thankyou enough for being so firm encouraging and to the point japaholic, It kicks my butt and helps me snap out of thinking the worst everytime I read it, your experience and strength are just what I need x thankyou!
Hi Karen youve come to the right place for support. My situation is different as I was diagnosed with persistent AF but I started with the same high heart rate like you. I was on Bisoprolol and Digoxin (and Apixaban) to control my heartrate until I had a cardioversion. I felt completely wiped out for the first few weeks. So dizzy I couldn't drive and unable to concentrate, very low blood pressure and really cold. Fortunately l wasn't scared as my heart rate was well controlled. Following advice on here I went to my GP and my dose of Bisoprolol was halved. No effect on heart rate but dizziness gone and able to drive. Was still tired but that was probably as much because my heart was still all over the place and not beating efficiently but I felt so much better. So I'd suggest you go and see someone to check your dose of Bisoprolol. It is known to have these effects and there are alternatives.
It is a scary condition, especially when first diagnosed. I absolutely agree with Japaholic. I am now 64 and retired last year. I developed AF about 10 years ago although not diagnosed until 2006, prescribed Biso and yes it makes you feel fatigued and breathless. My first episode was when I was sailing the Atlantic in a small yacht so absolutely no access to any medical help so I just had to get on with it. I like many people who don't even know they have AF because they have no symptoms, survived as without any intervention most will convert to NSR, at least at the beginning.
I continued to work as a counsellor and psychotherapist so could not bail out if I went into an episode, not easy, but I coped for a while at least. My advice would be:-
1 Ensure you are seen my an EP (Elcectrophysiologist) ASAP and get a treatment plan.
2 Return to your GP and tell them Biso is not working for you and ask for alternative drugs - it often requires experimentation as different drugs affect each of differently, some do well on Biso, many don't.
3 Read as much as you can about AF and the treatments and drugs used so you can discuss a treatment plan with your doctors - be assertive - many doctors know very little.
4 Your employer is more likely to be in a position to support you so when you know what it means for you longer term, go talk to your boss and ask how they may be able to support you, in the unlikely event that you may have an episode whilst taking a class, have a back up plan in the probability you will never need to use it. Again be assertive and show you are taking charge - your employer is more likely to be supportive if you are seen as taking charge of the condition rathe than allowing it to be in charge of you,
5 acquire coping skills for the anxiety - which comes with AF - not only the uncertaintity but also there is a direct physical link.
6 Understand that AF is NOT life threatening but needs to be treated respectively and it may mean you will have to alter your lifestyle and that may impact on how and what you you do, but that doesn't mean you give up stuff - adapt.
This may seem harsh advice - we know how you feel because we have all been there and although we sympathise, sympathy alone will not get you through this - which you will.
I had 2 ablations and now no AF. Ask about treatments and push to see the people who can help you - they won't find you - you need to find them.
Ask about anti coagulation and research the significance of anti coagulation to AF sufferers, it may be a choice as to whether or not to take it, but make it an informed choice.
Welcome to the forum, ask any questions you want, there is a wealth of help, knowledge and experience of living with AF here,
I completely understand your fears. I was scared to go shopping alone for the same reason but now I know what to do I'm no longer afraid. I did tweak my medications, checking with the doctor - halved the dose of bisoprolol, for instance, which made a huge difference to the side effects - and now function as normal again. You will get there.
These are all really good and encouraging posts Karen. I am a private tutor of dyslexic children, which means I don't have to face a class every day. But I have a timetable to keep, and sometimes af pops up inconveniently. Good meds and not allowing myself to get too stressed helps me to carry on through an episode. I guess you use one of the pill-in-pocket? Flecainide is what many of us take. It helps to shorten the episode. I have had a long time to get used to this horrible condition (diag. 1996 - aged 54) and I was very like you at the beginning. We all start off being scared stressed and often angry. But this forum is a great place to let off steam, we all know exactly what you re going through. So keep posting. JanR
Hi Karen and welcome to the mongrel world which is AF. Scary isn't it?
Three things you need to know about AF. 1) it won't kill you, 2) it won't kill you and 3) no it won't kill you. It might feel like it sometimes though.
My first bit of advice is to go to AF Association website and mug up on all the fact sheet there which will help you to understand this condition. Knowledge is power and that power will help you to come to terms with your diagnosis, understand it and stop worrying. Millions of people have AF and carry on with life. Maybe not as we know it Jim ( shades of Star Trek ) but life never the less.
My second bit of advice is to adopt the mantra "AF may be in my life but it is not all of my life." Far too many people obsess about it and worry all the time about the next event when they should be enjoying what they have. Trust me there are worse things to have! A positive approach can work wonders.
Third, talk to the people you work with. Explain the condition and how it makes you feel when events occur. It isn't like a broken arm which stands out so they won't understand. Nobody who doesn't have AF will. WE all do!!!!!!!!!
OK once you have sorted your head out you need to sort out your treatment. I'm guessing that you have only seen A and E doctors and your GP. This is like asking your Gym teacher to explain pure maths and calculus. Bisoprolol make most people feel worse than what it is trying to help. There are other possible treatments which again you can read about on the main AF A website. An electrophysiologist as a cardiologist with special interest in the heart's electrical system. An electrician to the general cardiologist's plumber. If you do not get satisfaction from your current doctors you need to see one. This is your right. If your current lot look blank when you ask there is a list by area under patient information on the main website. If push comes to shove some people pay for a private consultation in order to get into the system.
OK lecture over for now but ask any specific question and we will try to help. I had successful treatment in the form of an ablation and haven't had AF for seven plus years so things can improve.
Hi Bob, Great reply, Lankylass here, I have spoken to you before but I am interested in finding out success rates certain doctors have for doing ablation. I have just had my second cardioversion and it is going well but the arrhythmia nurse said that as the first one only lasted for 7 months, this one probably wouldn't last and I will be looking at ablation sooner or later. I have heard that you can look up the success rates of operations done by specialist doctors. I have 'googled' the AF cardiologist at my local hospital in Manchester but I only seem to get a list of his qualifications and a few comments about his 'bedside manner', but nothing else? Any advice would be helpful as I am trying to gather as much info as I can as CDreamer has suggested. Cheers, LL.
The only advice I can give is ask them. Ringing secretaries usually helps. There are no league tables as such but of course the major centres such as London , Liverpool et al will do more ablations so will have more data. Overall results do not seem to have changed much over recent years despite newer procedures like Cryo and laser ablation. Cryo is very effective if there are only the four PVs firing off but can't deal with any other stray signals which need RF at a later date. Laser is still quite new. I think that people quote 70% -80% success rates with multiple procedures but some lucky people do have success with one. Long term data is still hard to find and it used to be said that 50% of successful ablation will return to AF within 5 years. I'm now 7 s far and worth every moment.
Great, How are you now Karen ? Still working? Just done two hours hedge cutting. not that we have made much of a dent in our considerable length of hedges. Time for a litre of water me thinks. Cleaned the patio furniture and wound out the awning so cue pouring rain I expect. That's Britain for you. !
You have had some fantastic comments already, especially from Japaholic, a brave man. Follow his lead, be positive, you can overcome this and move forward with your life.
Such good comments. You've joined a great source of knowledge and encouragement! I would add that AF is scariest at the start and most of us have felt as you do. The more episodes you have that you deal with the more you learn. Much can be done to improve the situation, too, and life will get better. What was a major upset becomes no more than a minor annoyance in time.
You sound exactly like i was in first few months, I have PAF and heart rate of 184 when ambulance came, when put on bisoprolol it wiped me out (and I was only on the lowest dose) I did not know if it was pill or the condition, but after a month was taken off it as I just couldn't function (I now have metoprolol as pill in pocket) which means you take when having an episode.I was so anxious I would not use my air tickets to visit my daughter and new grandchildren in Sydney or even go to my dear nephews wedding couple of hours away!!, I was put on antidepressants for a year then stopped gradually and now cope well, even though it's getting it ore frequent (which unfortunately it almost always does. I also am on warfarin which makes me more assured, as you have probably been told stroke is the bigger risk!, you have not mentioned if you take any anticoagulants? If not I would discuss that with at least your GP. Or at future hospital appointments, it's vital. Anyway I am coping much better now and with support you will to (we are always here 😀 keep smiling
Thankyou lingooz, ive only seen my GP once in a bit of s worried state scince being diagnosed, but all she said was my pulse was back in sinus rythm and I should stop worrying and keep taking the med (bisopropol) regularly as it seemed to be working until i see the cardiologist in oct She never mentioned anything about taking anticoagulants ?
Hi it will be cardiologist who will suggest that no doubt!! It is highly advisable as AF biggest risk is stroke not heart attack, sure after your cardio appointment you will feel more informed and assured. I have nit seen EP yet but as my attacks seem more frequent feel I will try to get appointment soon, goid luck keep well
Listen to Bob when he says 1it won't kill you 2it won't kill you And three it will not kill you I repeat this in my head all the time since he told me ,and it is hard to make people understand because most of the time I look so well just listen to the wonderful people on here and get yourself a good support team GP Cardiologist EP and you will be ok xx
Hi Karen, I was in exactly the same position as you six years ago, diagnosed with PAF and frightened by the unpredictability of the onset of the attacks. I was put on bisoprolol and carried on teaching, but I let the head know my position and that I may have a problem any time. He was very understanding because it turned out that he too was an AF sufferer but had it sorted with his second ablation!
The bisoprolol did not agree with me and after a while, I was put onto flecainide as a PIP. I was then offered an ablation but could not hack the thought of this process and eventually went onto the flecainide 100mg twice a day. This kept the AF at bay for a year or so but I had to stop the flecainide following a scan. I then went on to sotolol(80mg twice a day) which did not stop the AF but kept my HR down to 90-110 bpm when I was in AF. I took this for a couple of years. I still have it as a PIP back up.
I eventually, after five fairly miserable years and a period of getting longer and more frequent AF attacks, had a PVI cryoablation which has transformed my life! I regret not taking the earlier offer of an ablation, but at the time I was overwhelmed by it all.
The issues for me
Reading the internet and scaring myself silly
Being initially treated by locum cardiologists and not an EP. You simply MUST see an EP
Being given misinformation by so-called specialists who told me that flecainide was too dangerous at more than 50mg doses
Getting a range of different treatments including IV flecainide, IV amiodarone, bisoprolol and sotalol, depending on the registrar at the time
Thinking that I could find the trigger and thus a cure. Of course there are triggers (for me =caffeine, alcohol, a heavy meal) but the condition occurred spontaneously and randomly as well
I hardly had any attacks to start with. They then got more frequent and lasted for longer periods and in the end I was in AF for 7-10 day periods for three out of four weeks in a month! I also started to get panic attacks but did not realise what these were at the start. I still have some issues in this department but they are finally diminishing 8 months after my ablation - I felt so vulnerable!
It's easy for me to say this now and of course everyone of us is different but if you get an offer of an ablation ie you have checked out medically, grab the opportunity with both hands and get back to living your life!
I found getting the hang of this AF lark is a bit difficult and I seem to be spending a lot of time trying to think what might have brought on my first diagnosed attack last week . My theory is to avoid it only I knew what it was
I caught a programme abut Roosevelt (FDR) last night Roosevelt last night .
He carried on inspite of major health issues through polio .
They have been a lot of corny quotes flying around but make no apology for adding Roosevelt's line "The Only Thing We Have to Fear Is Fear Itself"
I was very scared too. Got to see an ep who gave me the choice - medication or ablation. After much deliberation I opted for ablation. I was on bisop whilst I waited. I had ablation almost two years ago and no more AF. Now it will probably come back but great to be rid of it.
So good luck and you will get through this and find a way to cope.
It was NHS but I did have to wait, I think about 3 months. I was treated at St Thomas' in London.
Some people here have gone private for that first consultation and then back to NHS. That may be a good option if you are very anxious and if you can afford it. I think it was about £150.
AF is actually recognised under the disability act so it's good to inform your employers of you're condition as you will be allowed a higher percentage of sickness absence to help in managing this unpredictable problem.
Sorry to hear you are feeling so miserable with this condition. I had AF for years but it was never diagnosed. Had a stroke at 52 and then it was found. I also had a hole in my heart so either could have caused the stroke. Im now on Warfarin. Went on bisop for AF but it caused more problems than the AF. I can stop an AF attack now with a sharp cough out. Sometimes it takes 3 coughs to shock my heart back into normal rythym. I found this by accident. Dont know if anyone else has had any success with this. As for work, tell your manager and your colleauges what is wrong with you. I keep my employers informed of all my diagnoses and meds. They are very supportive as are my colleauges. I work as an outreach worker and have recently been diagnosed with partial seizures. I am now banned from driving which is a large part of my job. I am learning to deal with it because if I give up then I might as well give up living. Take a deep breath and go back to work. Make sure your doctors are up to speed and if you think they are wrong dont be afraid to fight your corner.
That is very sad Ectopic. I have had to give up a lot of things I used to do in the way of exercise but not because of AF, I have Myasthenia gravis which is sudden onset muscle weakness but I still walk and garden and travel and keep life to as 'normal' as I can, yes sometimes I get very down but I do thing one makes a choice - to live or not. As soon as you choose not you start dying,
I'm convinced that hard deep coughs sometimes stop my AF if it is just starting. Ice cold water sometimes shocks my AF into SVT or tachycardia of about 105. That often needs another event to then get back to NSR. Some activity like going to the bathroom can sometimes do it. Other times none of the above works on this mongrel.
I hope you have found the replies above helpful and supportive. I think that the worst time with AF is when you are first diagnosed. I found it shocking, scaring and disappointing and did feel doomed at first, but I genuinely feel that with medication, knowledge and seeing an EP it becomes less daunting and livable with. I am on beta blocker, anticoagulant, blood pressure medication and carry the pill in the picket, which I haven't had occasion to use yet. My EP has reassured me that if the PiP doesn't work I can have an ablation, so I now feel all posts are covered. i have had Af for two years now, but go for several months between bouts. What has happened with me is that each bout gets longer, the last lasted 3 weeks, but the meds controlled my heart rate and although it was irregular I had few symptoms because the rate was good. I could carry on life with just a bit more sleep. I hope that you, like most of us on here will find, with proper medical advice and support, that you will adapt to your controlled AF and be able to carry on with your life, without being overwhelmed by anxiety. I have also found mindfulness and meditation very helpful in calming my fears and altering my perspective on life. I hope you are able to take heart (pun intended) from all you read in this site and remember we have all started from where you are! All the best for your journey!
Thankyou Isabella it helps me so much hearing someone else who understands and has gone through or is going through the same experience. Thankyou for your helpful suggestions and advice I'll certainly try them all. So pleased for you that you at least get some sleep now
Thankyou all so much for your comforting support reassurance and advice, im so grateful finding people who understand how im feeling and what im going through. Your support on here is so appreciated. My phone battery died as soon as id sent my post and I lost the page. I thought it hadnt posted. My first day back at work was hard, suffering from worry and nerves at attempting to explain and tell my boss and work colleuges about my condition and how it affects me. My boss was quite good tryin to understand and was supportive and is doing a risk assessment. And i tried to explain the condition the best I could to work colleuges even though at the time I felt short of breath and a tad exasberbated and anxious. Some were understanding but others just seemed to want to skirt over talking about it so they could just get on, which gave me the feeling they thought I looked and sounded fine so to just get on with it making me feel like i would be a possible hinderance. I felt a little better after talking with the deputy head, he told me his son had afib and that he found it difficult at times and got quite down with it and that it wasnt an easy condition. That made me feel a little relieved that at least someone there understood a little about how I might be feeling.
Iv coped reasonably ok. Felt symptoms hard to explain by the afternoon at work and have sometimes have needed to try extra hard to focus on what im doing and not let thinking about the symptoms im feeling take over. Ive been relieved to get home some days just so I could sit in the peace and quiet or listen in peace to calming music to help clear my head and deep breath.
I see the Cardiologist on Oct 5th , how would I get to see an Electrophysiologist? who to ask to see one, not sure if I could afford to go private, is it expensive?
I understand ectopic, it can depend on the degree the attacks can affect a person. Twice now I took my sons dog for a walk i let him run a little ahead the first time on the lead extension nd had to sit down after getting out of breath nd chest tightness just walking up the street. The second time iI got light headed and out of breath trying to get him back then it sparked off my afib, I love taking the dog out but I get annoyed and downhearted because im anticipating symptoms nd worry I make it worse. Its enough to make you really sad. But like Japaholic says 'dont let it dominate you'
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