I am newly diagnosed with paroxysmal AF after a terrifying episode of heart palpitations at a shopping centre, which landed me in hospital. My heart rate hit nearly 200 . I see that some posts talk of "sitting it out at home " scary ! At what heart rate should I go to hospital ? It's all so scary . I've been given an anticoagulant and bisoprol .Grateful for anyone else's experience with this .My heart rate is now normal , but I feel I'm sitting on a volcano, in case it happens again, and what to do if it does. Would I be taking a chance to "sit it out " ? It would be good to know I could stay at home.
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Janna501
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BobDVolunteer
Hello and welcome to the mad world of AF. Firstly as a general rule, if you have any chest pain or pass out then you must go to A and E. Heart rates vary enormously (I think my personal record was 220 bpm) but normally around 150 is not uncommon during events.
The problem is that A nd E doctors do not always feel sympathetic to us AF ers and seldom do much other than observe and send us home once it is over. If that makes you comfortable then fine but many of us prefer to be in the comfort of our own homes once we have learned how our AF behaves.
I think waiting for the next event is always stressful and as I am sure you will have been told. AF is almost always progressive so you have started an interesting journey with some great travelling companions here.
Do go to AF Association main website and read all you can about your condition as knowledge is power and the more you learn the better able you will be to engage with the people treating you. Ask us any question and we will try to answer but above all remember the three things my consultant told me. 1) AF won't kill you. 2 )AF won't kill you and 3) AF won;t kill you. It just feels like it sometimes.
Bob
Thank you so much for that. It's hard to believe that your heart going berserk won't kill you, but hopefully I'll come to terms with it . I have a holiday booked and am so fearful that I dont know if I should cancel it . It's the thought of sitting in the plane wondering what to do if I go into A fib( hopefully I won't!)
Basically, you mean that if I don't have pain or other symptoms I can sit it out?
I'm sorry to go on about it ....I'm trying hard not to be fearful, but it's difficult. I wish I could push it aside, but it's the heart, if you know what I mean. Janna .
I know it is difficult but you will get used to it eventually. I honestly feel that one needs to live as normal a life as possible and NOT let AF start to rule it. To me this means going on holiday and hang the consequences. You have your anticoagulants to help prevent stroke and your bisoprolol to help slow your heart so what is the worst that can happen. You feel rubbish. What would you prefer? Take a risk and have a lovely holiday which may be interrupted by an event or cancel and be miserable anyway.
Once you let AF rule your life it has control. The only slight hiccup may be insurance which might be loaded but you must tell them or you could find yourself not covered. You have a diagnosis and you don't mention any further tests so there should be no problem.
I would advise that after your holiday you do see your doctor about a referral to a specialist if things do not settle down. NICE regulations are that you be referred within one month if symptoms persist.
As I said , ask and we will, try to help.
Hi and welcome. I asked the same question as you nearly two years ago.The people on here are the best and if they can answer your questions they will. You can also try the search on top right of the screen. I have just put in A&E and one of the posts there was one I asked about going to A&E. Hope this helps.
Hello and welcome to the forum. I had a similar introduction to PAF as you have had and I was at my wits' end as to how I could cope with the condition - waiting for the next episode and worrying.
As Bob has advised, get as much knowledge as you can and remember that not just the worst case scenario should be considered. In my panic I thought only the worst would happen - two and a half years later, I have a fairly normal life with my cocktail of drugs suppressing symptoms.
No one can really advise you not to go to A&E - you listen to your body and make your own decisions. I never went to A&E - too far away with a difficult journey, too much stress getting there perhaps to wait, wait and wait. Instead I lay down on my right side, relaxed (!!!) and waited it out - usually a couple of hours with average heart rate of 90 - 150.
Have you seen a cardiologist who specialises in heart rhythms - an EP (Electrophysiologist) as they are the only ones who really know how to work with this condition?
Keep asking questions and gaining confidence as you learn - we all did.
Best wishes
I can't believe I am already already getting such steadying advice, I stumbled upon this site in desperation. I haven't seen an Electropysiolygist, but have seen a cardiologist who will run some tests . I don't believe he specializes is arrhythmia. Hopefully he will refer me ? Thank you for replying .
Janna, I had a nasty first AF experience in June 2012, just a few weeks before I went to The Maldives! We were miles away from any hospitals there and thinking about it now, I can't believe I went. However, Everything was fine.
In fact, (I have to touch wood here) I have not had an actual AF episode since. Palpitations in the shape of very short runs here and there but nothing sustained. Bisoprolol didn't agree with me so I'm on no medication but take many supplements including magnesium. I swear that magnesium works miracles. Google it, plus take a look at past posts on here regarding magnesium, it's well worth trying.
Pat
Thank you so much for that, it will certainly give me some courage to take the holiday . It helps so much to know how others are coping with this. The experience of being rushed into recuss in hospital, flat on my back and being pumped full of drugs, I was sure I was dying ....! I will explore the magnesium.Im so grateful for these replies. Janna.
PS. How great that you haven't had a second bad episode since then, I'll touch wood for you also !
• in reply tofallingtopieces
That sounds really good. Can you tell me how you take your magnesium please Pat ?
Thanks
Sandra
teach2learn• in reply to
My EP recently addressed this in his weekly newsletter (which I highly recommend subscribing to by email. It's free and always packed with good information. Just Google Dr. John Day, Utah, until I can post a link), in which he states that a large green leafy salad daily is packed with enough magnesium to take care of requirement. Of course, the bonus is all the other nutrients and fiber that come with this truly natural supplement.
fallingtopieces• in reply to
Sandra, I take around 800mg of magnesium citrate in capsule form just before my evening meal. I've experimented with the dose and this is right for me. As much as I can tollerate Without it giving me diarrhoea.
Pat
I take Magnesium as well Janna (and Pat) and I am down to one episode a year. I also try and do shallow breathing exercises, so I don't know if either are helping, or both. At the moment I am getting Carolyn Dean's Magnesium sent to Oz and I will keep it up. Her free books are worth a read.
I feel strongly that I have had more support and information from this forum than I have had from GP's and Emergency, so I am sure I speak for everyone when I say just ask for help, someone on this forum will listen. x
Hello....
Similar to your experience, I also have had only one long run late last year of twenty minutes where pulse was 140 and after several tests at Papworth, am not on any medication so far.
I have watched the videos by Dr. Sanjay Gupta of York Cardiology and found them very informative and reassuring. He did a whole video about magnesium picolate and when I rang Boots to speak to a pharmacist, she agreed that it is indeed very helpful....but has to be prescribed by a GP.
Is it the magnesium picolate that you take ....or some other form of magnesium ?
There seems to be so many vitamins and supplements available with magnesium.
Thank you 🤔
I feel for you. I was in a similar situation as you last year until I started taking flecainide to suppress the attacks. My experience was that if I felt unwell when I took an episode of AF or if I just wasn't coping then I went to A&E. I have phoned an ambulance twice when on my own. The paramedics were divine and the A&E staff and doctors were fantastic. I never felt anyone was unsupportive and all were very very sympathetic. You can't base your decision to go to hospital based on your heart rate because it varies so much. Base it on how you feel. My anxiety levels always massively increase during an episode which doesn't help either and having the support of A&E helps enormously. Sometimes they actively treated me and sometimes they just monitored but I never made to feel I was wasting their time.
Read everything you can. Watch YouTube videos particularly Dr Sanjay Gupta who is a cardiologist from York (Google him) who has great information easily understood.
One thing I learnt was that when I get af I get a massive ventricular response which means my heart beats very fast in response to the af. Not everyone gets this apparently. One of the doctors in A&E said nobody can cope with tachycardia so really don't worry about going in if you get it regardless of cause.
Hope this helps. Everyone's experience is slightly different but if you aren't coping with symptoms go to hospital x
• in reply toTototcx
Totoxcx, I completely agree with you here . I also have a fast ventricular response and my experience at AE has always been very positive. I have never been made to feel a nuisance .
In recent years when my heart rate would not lower, was near 200 & around 250 on some occasions I have been blue lighted to AE.
With experience you get to know what is the right decision for you.
Sandra
Hi Janna. Welcome to the forum aka your "AF family". It is a wonderful source of support. I went to A and E a lot when I was first diagnosed. This is how I was admitted to coronary care and referred to an electrophysiologist. I felt just as you did at the beginning...unsure, scared, but it is true that you get a handle on arrythmias and this forum has been great. Once I knew what my arrythmias were and that they were not life threatening (even though they felt like they could be!!) it was just about learning about them, accepting it and adjusting your life when in arrythmias. If you only have occasional epsiodes then even better. Enjoy your holiday...try not to sit in anticipation of the next episode even though that is difficult not to do...I have episodes daily and many people are in permanent AF (which some say is easier to cope with believe it or not!!)..and even with regular events, life is still good and not to be put on hold. Being first diagnosed is a horrible time. I remember it so clearly..same as you, taken into resus..the shock of it all happening. I was stunned! But rest assured you are not alone and you are safe. And go to A and E in the early stages when you feel unwell or fearful in AF until you get a handle on it. I always find A and E staff amazing and in my experience they always take it seriously especially fast and prolonged AF. Take care and keep in touch. Have a great holiday!!!! X
This was my situation on jan 14 this year. I was placed on sotalol and yhen switched to flecainide and atenalol. I have been on apixaban the whole time. I saw another cardiologist who specializes in electophysiology and i am having ablations next week. Im a 42 yrs and a single mum. I have had a few minor episodes on meds and am hoping the ablations will be a success. I understand your anxiety. I have learned to live in the moment and deep breathing. It is much a mind game as it is physical. Mine came on due to a major stressful event, so i also dont take things so hard anymore either. All the best.
Hi Janna,
Go and have a great holiday. You have now been placed on a beta-blocker which will slow your heart rate and in addition you are on a anticoagulant to protect you.
Kind Regards
Barry
Well mine goes up to about 170 so you're not alone. It feels awful and the first time is truly terrifying because you don't know what's going on. My first time was on the day of the Royal Wedding, which was great because A&E was empty! I didn't have another bout for two years though, everyone is different. I hope yours leaves you alone for a while.
Read up on the AF Association website because there is so much good information on there. I don't go to A&E myself since that first time because it's a pain and a faff, we're too far from the hospital, but if I had chest pain or felt really bad I'd go. Don't let it put you off your holiday, but don't forget to tell your insurer...
I've only felt the need to call 999 twice in the last 6 months. Once it went back in 10 mins and the second time it dropped to 120 after 3 hours and stayed there for 30 hours before going back to my normal 60. I'm getting more frequent episodes now, about once a week but provided I'm in a safe environment I can sit it out. The worst things for me is when it changes from normal to AF, I feel so ill but once it's been going for 15 mins i can cope unless it shoots up to 200 which happens occasionally. My main problem is when and where it happens. I have a part time job which I love, but I'm in front of the public all the time. My employers have not said anything but my colleagues worry about me and if I Have an episode they have to find someone who can take my place at short notice. I feel I'm being a nuisance. I have Left Ventricular Non Compaction and My EP seems reluctant to put me on additional drugs or do an ablation. Any advice on what I can do myself. I have put on about a stone since having my ICD, could that cause the increase?
Thank you all you great people who have replied to me, I had no idea you were out there, such support...I hope I will be able to cope more, and I'll continue to pick your brains , if I may. It seems with this condition, you need to treat your head as well as your heart ! I hope to take the holiday, albeit with woblyy
legs. I'm wondering if my GP would give me something for anxiety for the flight, would that be a bad idea ? Can being anxious and frightened bring on an attack even? Thank you again, Jannah
I completely sympathise and understand what you are going through. It sounds pretty much the same as my experience of PAF, which began just over two years ago. It is such a scary thing to go through, and I went through the most terrible worry about it happening again. It did happen again over the next 18 months, three more times, and I was not prepared to 'sit it out' at home, but on each occasion went to hospital where I had cardioversion to put my heart back on track. Staff at the hospital were helpful and kind too. I cannot imagine doing anything else really when my heart rate was so high. I have since had an ablation and hope I will be free of the fast PAF. But one can never be sure. All I can say is that taking the anticoagulants and bisoprolol is keeping me as safe as possible from stroke should it ever happen again.
I have, over time, learned to live with AF, and now put worry to the back of my mind, in the knowledge that I will be OK if it should ever happen again - help is at hand. It really is helpful to do this and get on with life, just taking good care of yourself. If I go out or away from home I always remember to take anything I may need with me in case it should happen, rather like taking my purse or phone! I try to eat healthily, keep mobile and active and be as stress free as possible.
I am sure things will get easier for you as you get to know your condition, and realise that things are not so bad after all - you are one of many! This forum has been such a help to me- I suggest you stick with it too. All the best to you.
All good advice. The episode I had 4 years that sent me to A&E was the worst I have had to date. Since then I have adapted my lifestyle and due to the bisoprolol I take episodes since have been much milder and I've never felt the need to go to A&E again.
I constantly read about this being progressive, but there are exceptions and I shall do everything I can to try and be one of those exceptions. I don't believe you should have it in your mind that this is going to inevitably get worse. Believe that you can control it. You never know, you might be one of the lucky ones.
My first episode was brought on by a virus and was also terrifying because as you say 'it's the heart'. But I didn't have another one for several years so I hope you are lucky too, but if not treatment and support is getting better all the time!
Much good advice as ever!
After first diagnosed with PAF in 2010 I used to go to A and E and indeed, in the early days, had a cardioversion. After that it was a few tests and observation and sent home still in AF. Since then I've 'sat it out' both at home and abroad until I returned to sinus rhythm on quite a few occasions. My first ablation last year hasn't made much difference and I went to A and E last November as my EP wanted an ECG. I ended up staying in and another cardioversion.
Now that I know I'm having a second ablation I 'sit it out' , but would go to the GP or A and E if my symptoms were different to the norm or if it carried on for more than, say, 48 hours. It really is so variable and a matter of personal judgement on how you feel.
Like everyone else I wish you well in your AF journey.
I was diagnosed with paroxysmal atrial fib 4 mo ago, just had a second event 2 weeks ago. When it started I called my cardiologist and was told to rest, drink water , take an additional sotalol and if I had chest pain or felt short of breath then go to ER. I stayed home and tried to remain calm, about 10 hours later it suddenly stopped and I felt great, like nothing had happened. It was stressful but now Im not as fearful of the beast, lol.
Thank you again all of you for sharing your experiences and advice. I am so grateful.. I am calming down somewhat and re reading your posts for re assurance. I can't help though considering that I might well have another attack at some point . Could you please advise me what I should do if I try to sit it out at home? Should I lie down, sit up, drink water or not. Is it not safe to do this if I'm alone. Also if it happens when I'm out what should I do ?This first attack I had was a nightmare at the shopping centre, and I was ambulanced to hospital . I can't imagine being able to sit in a shop waiting for it to hopefully pass ! Would it be safe to drive home ?
I
I had anti anxiety drugs too for a while to help me through difficult occasions. ..they're ok and did help a bit. You really won't be able to cope with a heart rate as high as 200 and neither you should. It's hard on your heart without getting support. And I am one of those people who absolutely cannot cope with af and learn to live with it. ...but I have learnt that everyone has differing levels of symptoms. I felt silly and over reactive at first when I got af but everyone's symptoms are unique to them. If you can't cope with your symptoms then you need the help and support of a medical team. X
Janna, you could try any of these, which I'm sure have all worked for me in abating runs of extra beats;
take a deep breath in and hold then breath out very slowly.
Cough hard repeatedly.
Dissolve a Couple of spoonfuls of magnesium citrate powder in warm water and drink.
Pat
Try to stay well hydrated Janna. If you feel OK and dont feel faint or dizzy then driving is OK If you ever have black outs then you must tell DVLA but otherwise no need. You should tell your insurance company by the way or they might re4efuse a claim as it is a material fact. It shouldn't affect your premium.
If at home just rest and breath deeply.many people find it easier to sit up but whatever suits you.
Sorry I've been out this afternoon. so long delay.
Bob
Hi there .... Well it seems that advice varies from patient to patient. My Cardiologist advised me to go to A & E if an episode lasted for more than 40 minutes .... But after reading several comments from other AF sufferers it looks as though it varies quite a lot. I guess you must act on your own situation and needs, I'm not sure you can generalise with this. Good luck and keep well. Dorothy.
My EP says you should be ok to sit it out if you are on warfarin/anti coagulants...
I don't get the volcanic effect any more as i don't let myself get overtired... a key contribution...
Reference has been made to it above, but I think concentrating on your breathing is often overlooked. We tend to take it for granted and as a result often breath shallowly and take short breaths. Being aware of my breathing has helped me immensely when I've had ectopic beats or felt an AF episode maybe round the corner. I take a slow, deep breath in through my nose and then fully expel it through my mouth and continue to do this in a steady rhythm. I've got to the point where I can do it naturally now when out walking rather than have to concentrate on doing it. I think it can also take your mind off the heart issue and relax you. It's certainly worth trying anyway.
Coughing hard was also mentioned above. I've never understood why, but I always feel the urge to cough when I get ectopic beats or I feel AF may not be far away. And yes, coughing to clear the urge to want to cough does actually help.
Thank you all for the tips on when to try to sit it out or go to A&E . I think the thing that really scares me about "sitting it out" is , is can the heart be strong enough to deal with that speed of beats ?. That's why I was convinced I was about to die when rushed to hospital. I just couldn't believe my heart could cope with it
.Janna .
• in reply toJanna501
Janna, if you are having a rate around 200 for 30 mins my view is that you should get to hospital. I certainly would. My GP s practise want me to go in at 140 but I try to hang on longer as I don't feel compromised at that rate if I don't overdo things .
Sandra
Janna501• in reply to
Thank you for that. My heart rate was 200 which put me in hospital, and it's my first attack. They treated me with drugs , and kept me in overnight until it returned to normal . That's why I've been wondering if I would be brave enough to sit it out at home if it happens again, and if it would be safe to do so ... When you have stayed at home with 140, has it returned to normal, and did it take long ?
Janna
• in reply toJanna501
Janna, you will find out with experience how your own heart behaves and responds . AF is very much a ' mongrel ' condition .
I very rarely went back to normal sinus rhythm at home and usually required an electrical cardioversion .
In between attacks i mostly feel very well and a new onset often takes me by surprise.
As has often been said on this site ....AF may be in your life but don't let it be your life. It took me many years to accept this.
Look on the bright side . you may not get another attack for years .
Sandra
Hi😊 I just wanted to add something to all the wonderful advice you've already received. I can only speak about my experience with a.fib which I've had for many years, that certain foods i.e. processed foods, spices and alcohol definitely cause episodes, for me. As for going to AnE, some people are more symptomatic and very uncomfortable with fast rate a.fib, so my advice would be to go with your own intuition. You know best how your body feels. And never, never feel guilty or embarrassed for going. It's your life🌻
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