My afib came back around 3 am and it's still here after 7 h. I came to A&E, they did a chest scan and blood and I'm waiting for response. I'm psychologically destroyed by this and I fear they won't do anything because I don't have high rate, leaving me for months in this again waiting for the cardioversion and taking meds that stop me from living my life... further damaging my heart by untreated afib.
I know I have 48 h to be cardioverted before all the anticoagulant protocol comes in place. Do you know if all hospitals apply the same rules or if I have hope to be cardioverted if I go somewhere else.
Any help is much appreciated.
Thanks 🙏
On suggestion of my cardiologist in Italy, I flew with the early opportunity to Italy on Saturday night and I got cardioverted in emergency on Sunday morning on the Italian National Health System for free. They tried first with Flecainide in vein, it didn't work, not surprising as mine doesn't responds to meds. After the Cardiologist called the anaesthetist and performed electrical cardioversion straightaway. I was out by Sunday at 14:00.
I'm in a privileged position because I'm a double citizen but everyone should get this because this is the international medical protocol on afib. I'm going to try to get my story out, because this is really not fair. Thank you to everyone that tried to help.
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Good luck and hope you get the cardioversion you need. My HR is always comparatively low for someone in Afib but it hasn’t stopped me having 3 cardioversions, one just 3 weeks after ablation. Not sure what you mean by the anticoagulant protocol - are you not on an anticoagulant?
No, I'm not on anticoagulant so if I don't get it within the first 48 h then I will have to wait at least a month for the anticoagulant procol. So you got cardioverted by A&E even with low HR?
I don't understand why I'm find all these problems to access health care, I really don't understand why?
Thank you for answering. This makes me feel very alone.
I think that your best chance is to look for a private cardioversion.
The rate shouldn't be an issue, I have both tachycard and normal rate episodes.
However, have you thought about getting rid of the AF permanently? Look here wolfminimaze.com/ and check whether you may qualify. There are somewhat similar procedures available in 🇬🇧.
I didnt go through A&E. My first CV I paid for as we had huge waiting lists and like you I wanted to be in there with a chance of success. Some hope - NSR lasted a week lol! Second CV on NHS also lasted one week! But it meant I was eligible for ablation (in general CV is seen as a way to tide things over or as diagnostic). It was a year after being diagnosed with persistent AF that I eventually got the ablation. Now enjoying every day I’m in NSR and wish the same for you.
Try not to panic as there will be a way forward for you. Even if you have to wait a few weeks it won’t make that much difference to your arrhythmia long term. It sounds like your AF is very symptomatic and that’s one of the criteria for being offered ablation.
I know what your going through the fear every time an episode kicks off, the fact that they call an AF episode palpitations is a gross understatement, I told my cardiologist I'm getting a second opinion which I did, he started to take me seriously after that
I've always thought palpitations sounds a bit Jane Austen, needs a quick sniff of smelling salts, get over it. I avoid using the word, it doesn't convey what AF is and does.
Exactly right, just a little fluttering that's what they think when in reality it's a thumping ,disorganised, pounding ,seemingly endless hours of fear till it becomes NSR again till the next time
I feel sorry for you as l am in a very similar situation having been in Afib since yesterday afternoon actually I have been in and out of afib now for a number of weeks. l was suffering from bad chest pain l went to A&E and after an ECG and blood tests they said l did not have a heart attack so l was sent home.As with other replies, when in afib my heart rate is rarely over 85bpm although l can feel every thump and feel quite unwell. For some reason I was under the impression they would not do a cardioversion unless your rate was above 120bpm, I'm not sure where l got that from but like yourself my fear is that this almost constant afib is damaging my heart.
A couple of weeks ago l had a CT scan for constant back and stomach pain and it was noticed that l have an enlarged left atrium, I'm not sure whether my afib could be responsible for this or not.
The results of the scan has been sent to Cardiology but l have not heard back from them as yet.
My husband is in permanent AF with rates around the 85 bpm mark whenever I think to check on him. He is completely unaware but thankfully is taking anticoagulant.
Are you on medication? I've had very many cardioversions but never with a rate such as yours. The lowest was probably 130bpm but persistent and refractory to drug treatment. Its best to avoid dc cardioversion if you can as there are always risks involved, though very rare, and it is not a permanent fix as many think. Some remain in sinus rhythm after this procedure for just minutes or hours whilst others last for years.
How very disappointing for you . Mine have lasted 6 months to 12 months with a couple lasting several years. I've had a grand total of 25 over 30 years with the last one in June this year. I should mention that I am refractory to chemical cardioversions....and 'known' to ER
I'm the same chemical doesn't do me anything. It's very interesting the difference in duration, my first lasted only 3.5 months and now I'm terrified it will get worse, but I understand for you they were all different duration?
Yes all different but latterly 6/12 months. I take a little used anti arrhythmia drug Disopyramide which is supposed to help with AF thought to be vagally mediated.
Sorry Joy but l'm not sure if l understand your comments. I'm am already on Sotalol which is an antiarrhythmic med having been on Flecanide and Biso. before that. Also had an ablation two years ago and was offered another last year but never happened due to another issue. I understand that an ablation might be refused if you have an enlarged atrium but this depends very much on the size of the enlargement.
Hi! I’m not a medical person but I also have an enlarged left atrium which I think (and don’t know for sure) was due to being in AFib 24/7 for 11 weeks when this nightmare first began!
I tend to agree with you AF causes more trouble than you ever imagine .After years of Afib i was recently diognosed with Heart Failure with preserved Ejection fraction with a stiff left atrium so it can't relax completely between beats not sure I explained that properly but just one more thing to worry about as well as my Echo result that came back today as pulmonary hypertension 60 so not brilliant and a holter that showed too many slow heart beats,anyone else care to share if they have a similar outcome and what treatment you've been offered ?
I'm sorry to hear that. These days its always one thing or the other. My mental health is taking a hammering at this moment and I'm constantly checking my BPM which is a silly thing to do, but l am worried about the damage being done with to my heart being so unstable.Besides my chest pain which l have been told not to worry about, I am suffering from lots of back and stomach pain. I still have a broken right humerus and torn tendons in my left arm which are both awaiting treatment. I'm having real trouble sleeping which is taking its toll on my health in general. I am being referred to pain management to see it this will help but I'm going rapidly downhill. Sorry for the gripe.
Electrical cardioversion in A&E is not usually offered unless you are ‘haemodynamically unstable ie your circulation/BP is in trouble in which case you would be unable to even sit up. I went into A&E where they recorded my HR at 167 bpm but that didn’t get me an immediate cv. A cv is expensive for the NHS and as said, has risks, so it is a last resort - in this country.
I'm not taking meds (because I'm only 38 and perfectly healthy except my heart) so I had a 48 h window. I flew to Italy on Saturday in Afib and entered a cardiology A&E on Sunday morning in Milan (I have double citizenship), I've been cardioverted immediately together with another lady in her 70s. We need to do something about this in the UK, I had literally to run to another country to prevent my heart to be damaged because they can't do a procedure that takes 10 minutes. We all should get it, as they do in Italy and in the other countries. We all deserve free health care. Sorry for the rant but I think people should know that what they are doing here goes against the international guidelines.
I live in the USA and whenever I was in Afib and went to a hospital emergency room for treatment (if I would not go back into NSR within 12 hours or so at home), they did not want me to stay in Afib for more than a few hours. I was put on an IV drip immediately with Diltiazem (calcium channel blocker) to get my heart rate down because when I was in Afib, my heart rate would increase to almost 200 bpm. That would usually get me back into NSR. If I did not convert to NSR within 4 hours or so, they would admit me to the hospital overnight and, if I remained in Afib, I was cardioverted the next day. Until I received my first ablation, I was on a protocol of Flecainide (anti-arrhythmic) and Diltiazem and eventually switched from Diltiazem to Carvedilol (beta blocker). Depending on the frequency of my Afib episodes, I was also on Warfarin (blood thinner) at various times. I don't remember ever remaining in Afib for more than 24 hours without some type of medical intervention.
It seems in the UK health system there is a lot of waiting around to get the proper treatment. I suppose that is because of the different health systems in both countries. I pay for private health insurance and the UK, and I think Canada also, are on socialized medicine.
I have private health cover in the UK and still I get almost nothing compared to what I would have for free on the Italian National Health System. Saturday morning while crying in A&E in the UK because they won't treat me, I emailed my cardiologist in Italy and he instructed me to go to the emergency in Italy before the 48 h from the beginning of the episode started. I got cardioverted in Milan on Sunday for 0 £££$$$ immediately. If I had to pass again what I passed the first time: 5 months waiting (with private Insurance in the UK), all the meds for months (I don't need them if they perform the cardioversion within 48h), knowing my heart is being damaged for no reason really... I think depression would've kicked in even worse than first time.
The NHS is in a parlous state. It's all very sad and, often, I guess, tragic.
My elderly friend, now 90, and my son's colleague in his mid 70s, both have permanent AF and live good lives free from heart disease. I always think that AF can sometimes make you feel like it will be the end of you, but, generally, it isn't.
If you are very symptomatic that is truly bad luck, but usually the ventricles do their bit even while the atria are quivering away.
My case it's a bit different because I'm only 38 and I can't accept it, I'm just driving myself into early heart failure. How is my heart going to be in 30 years? I'm sorry to say, it may sound too straightforward but the life expectation of someone that is 90 or 70 is very different from mine. I also imagine the life style is different, I don't want to be biased but I imagine the level of recreational and work activity is very different.
It must be very tough at 38 to be putting up with this. My son's colleague is now 76 and still doing some English teaching. He has had AF since he was very much younger (I am not sure when but it's a long time) and has had several ablations and was one of the first to have this procedure in Germany, I believe. His AF is now back with atrial flutter, but he is fine and coping well.
My understanding is that lone AF will not damage the heart, but you suggest otherwise. Have you been told differently? My belief is that the ventricles are quite separate from the atria physiologically and work well despite what is happening "oop North". Keeping the ventricular rate down is the important part, by far, as sustained tachycardia can weaken the mitral valve and can lead to ventricular myopathy and heart failure. I thought that stopping the AF - for example by CV or pharmacologically - is needed only when it is too symptomatic to cope with.
There are almost no statistics about lone AF because it's too rare, what cardiologists keep saying is that I may live well for 20 years as I may develop symptoms after few years. I suppose, as it is a chronic disease and only gets worse, in doubt better to stay out as much as I can. When I'm in it I can survive well, but I'm definitely not at the top of my game, and why accept it if it is possible to try to do something about it?
Yes, thank you - I take your point. In fact, I added "lone" in as an afterthought but what I meant was those individuals whose AF occurs with no obvious cause such as valvular problems, hypertension, sleep apnoea and so on.
What I was trying to say was that because the atria operate largely separately from the ventricles, and contribute little to their activity, AF will have no effect on them except via the AV node which is caused to trigger the ventricles irregularly and, often, overly quickly. If this latter can be kept reasonably controlled by beta-blockers or similar, the heart's future health seems to be safe.
What you say Steve is correct to my knowledge but because there are no data, it's not clear what happens after 20 years... the left atrium deformation will still happen and the change in the tissue too, this can be assessed only opening the actual heart and looking at it (said by a cardiologist). I personally feel cognitive impairment, fatigue, little and bad sleep between few of the problems. Blood stagnating around my body (this is why anticoagulants are needed to be cardioverted after 48 h from the start of the episode) and arteries reducing the diameter... if I can spare any of those to myself I will do, if nothing can be done and I will have to accept to live on low power mode then I will try to change my mental approach. Anyway, in Italy, anyone in good shape and health independently from age, would be cardioverted. If NSR can be maintained, it should be, these are the guidelines (except for NHS apparently).
You are right. It's one of the worst things for diagnosis that the heart cannot be easily examined and even MRI scans are less than perfect as the heart is in constant motion.
I didn't know that our NHS had different protocols regarding cardioversion. So far as I know, in an A&E / acute care situation, it is - if available - often used immediately, even without anti-coagulation, whenever a patient is suffering from any kind of haemodynamic instability from their AF, usually related to uncontrollable tachycardia.
Glad to hear you got sorted, well done, I did wonder where you’d gone, not sure others would have gone to that extreme but not many would have the option I guess.
I found this link over the weekend while looking for ablation statistics, it might help you to find somewhere closer to your UK base. It has Wales and Private hospitals towards the bottom of the list.
Hi. So sorry for what you’re going through. I’m thinking that the lack of a Cardioversion for you may be to do with not taking the anticoagulants? I remember being told that I had to be on them for at least two months before they would give me one.
I hope things improve for you. I’m extremely symptomatic too with it( mine is the fast version with resting pulse between 140-170) 😔
HI, and hope all goes well...Firstly Afib is treated either by rate or rhythm control. If rhythm is not possible, as it seems with me, then your rate will be monitored and you will be treated accordingly. If you develop long standing Afib, there is little you can do about it, its common, and people get on with their lives. Why would medication destroy your life?. Without it you could well end up with issues and problems you do NOT want. No one wants anticoagaulants, but I have been on then 3 years now, along with beta blockers for persistent Afib with zero problems. I still do all I want to do. I was a competitive runner and I am almost 70. My only concession is I now brisk walk, but I travel do the lot, in fact just got back from 6 days in Budapest and walked miles.
These drugs are life savers and prevent stroke etc, so be glad your problem was diagnosed. One in 5 acute strokes diagnosed in A&E units are found in people with UNDIAGNOSED Afib!!...Get your CHAD score done and talk to your cardiologist, in fact more specifically ensure you are seen by a Cardiac Electrophysiologist who specialise in rythm issues. That is what you have, not necessary a 'plumbing' issue. Finaly Afib is a progressive condition, but not a rhythm that kills you...You learn to manage it, and not let it manage you. Many people live long active and normal lives with Afib!!
Most of your considerations don't apply to me as I have half your age, but thank you for explaining.
I can't do half of the activities I like to do on anticoagulants, and most of all I don't need them if I'm cardioverted within 48 h, so I have to make my life a misery for two months, purely because A&E won't treat me accordingly to the international guidelines with a 10 minutes procedure. Anyway I ran abroad and got sorted.
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