My mum’s in her 80s and has had Afib for about 10 years. Since the initial episode and hospital admission 10 years ago, she never saw a cardiologist but was on medication from her GP. Over the last few years she’s been getting more and more episodes where she feels very unwell – fast & irregular heart rate, vomiting, feeling faint, chest tightness, feeling sweaty and clammy, and on the last episode diarrhoea. She was told at some point over the last few years that if the episode didn’t subside within 10 minutes, to call 999 – so that’s what she’s always done.
That’s always led to her being sent to A&E, sometimes needing medication to bring her back to a normal rhythm and sometimes needing electrocardioversion. She’s also been under the impression that both the episode and the electrocardioversion could cause a stroke or heart attack, so it’s been a very traumatic experience for her whenever it happens.
She’s now moved to a different part of the country to live near me and has been seen by the local Arrhythmia Clinic, who seem great. Unfortunately, last week she had another episode so waited her usual 10 minutes, called 999, was admitted to A&E and then into the Cardiac Unit overnight as there was ‘something not quite right’. However, when the senior consultant came to do his rounds the next morning, he gave her the impression that she shouldn’t really have been there. When we spoke to the Arrhythmia Nurse, she’s also confirmed that my mum doesn’t need to call 999 or go to hospital, she should just relax into it and let it pass and that Afib is nothing to worry about. She’s also told my mum she has Atrial Flutter as well (which my mum was unaware of until now!)
I’ve been doing a lot of reading and learnt that Afib symptoms can vary greatly and even be asymptomatic. So, my questions are (apologies for the long background story!) –
- My mum’s symptoms seem quite severe (fast & irregular heart rate, vomiting, sweating then clammy, chest tightness, SOB). Are these symptoms typical and do other people who experience that just relax and wait for it to pass?
- When would or wouldn’t you call 999?
- I’ve read that there’s a 48-hour window to do electrocardioversion. What happens if my mum just waits and misses the window – what are the implications?
Thank you so much for any responses – I think I’m going to be learning a lot from this forum!
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Does your mum have any other heart issues? I was told to dial 999 by my cardiologist if my AF lasted longer than 10 mins and that plan was written into my notes. But that was due to my also having other heart problems which I was born with. I had so many 999 call-outs due to my AF and Atrial Flutter that on the last occasion they gave me an emergency pacemaker.
Is your mother anticoagualated? One would hope so . That would negate the need for a 24 hour "window" for cardioversion. (48hrs is stretching it a bit)
We all experience AF in different ways but the general advise given here is that any chest pain, shortness of breath or dizzyness should be investigated so I can't agree with what you have been told.
Yes, she's been on anticoagulants for years - useful to know about the window, and thanks for the advice. She always says that it's chest tightness not really chest pain - not sure if there's a difference or if she's being overly detailed??
I always find it so difficult when asked if I have chest pain when I get a full on AF episode, yes the chest hurts, but maybe not the crushing pain they describe, but as we are all so different I think it is easy to ignore the seriousness of the pain! Last time my chest pain turned out to be a the onset of asthma!
Welcome to our forum! I'm sure you will get lots of advice here as it's quite an active forum.
Firstly, can we assume that your mother is taking an anticoagulant ( aka blood thinner)? I would hope that she is. In which case the 48 hour rule for cardioversion in that window would not apply.
Regarding stroke risk , I believe that once you hsve been diagnosed with AF your stroke risk remains much the same whether you are in or out
of AF, providing of course that you are properly anticoagulated. As far as electrical cardioversion goes, then yes there is a risk of stroke( and other nasties ....) but providing that the aforementioned anticoagulation is in place then the risk is greatly minimised. I've had a great many of these and live to tell the tale.....so far!
Normally we are told that if chest pain, dizziness, clamminess etc such as your mother experienced accompanies an AF episode then a visit to A&E is warranted. I can't understand your arrhythmia nurses response if she was aware of this.
Many of us do panic somewhat at the beginning of a fast episode and learning how to flow along with it for a period of time does often help to calm symptoms down.
As reply above - yes, she's been taking anticoagulants for years. Good to understand the stroke risk a bit more and the advice about the chest pain etc. Maybe the arrhythmia nurse was going on my mum reporting no chest pain, just chest tightness? Thanks for all replies so far - it's been really useful already!👍
"Regarding stroke risk , I believe that once you hsve been diagnosed with AF your stroke risk remains much the same whether you are in or out"
Yes, the CHA2DS2-VASc Score for for Atrial Fibrillation Stroke Risk currently doesn't include any allowance for frequency/duration of AF i.e. paroxysmal, persistent and permanent all treated the same - take daily AC for life. However, several studies in recent years indicate stroke risk is linked to episodes and their duration - which makes sense IMO. I suppose the issue in the past has been detecting asymptomatic paroxysmal episodes, however that has changed with technology like Apple Watch AF detection/ECG capability. The REACT-AF trial, which is currently underway is evaluating a PIP approach for AC usage for people with paroxysmal AF. If a person has an episode >X hours (according to an Apple Watch using a special algorithm) then they start using AC for the ensuing 30 days. Using the trial's criteria, if I was 65, I would have used AC for only 1 month in the past 12.
The trial is yet to prove the effectiveness of the PIP approach - but clearly the views on being on AC full time irrespective of AF type are likely to change.
As a follow on from bean_counter27 's Reply, re the research that show stroke risks varying according to both duration of an AF event and your cha2ds2-vasc score, here's one interesting article ...
... coauthored by Dr Rod Passmore, who is also the director of the current REACT-AF PIP anticoagulation/Apple watch trial being undertaken in USA, and which bean_counter27 also mentioned.
A/F affects us all differently and can feel very frightening, which is a problem in itself because that can cause panic so that coupled with the A/F can certainly cause the symptoms you describe. Our fast beating erratic heart and the experience of feeling it thumping is not nice and you wonder what the heck is going on, what is going to happen to you etc. I have had A/F for the past 20 odd years and never been told that there is a 10 minute rule so maybe this has changed, there are ways of coping, listening to gentle music, breathing exercises which most of us employ, trying to relax and slow the H/R down and if you go into past posts on here you will see what has been written about coping mechanisms which might be able to help your mother. I hope that she has been seen by a cardiologist in clinic and is being monitored, has a drug regime etc.,( the anticoag, will protect her from stroke)if not then get on to her GP and ask for an urgent referral so that she can be suitably medicated and her symptoms relieved, or tell him you will just keep calling an ambulance every 10 minutes.........that won't go down well. Sending best wishes to your mother, I hope something can be done for her x
I've never been to A&E with mine, once I read it doesn't kill you I just decided I'd wait it out and see what happened. I've had HR as high as 160 but I think there are some who go into the 200s, that's probably more frightening. I've never had AF that lasted much more than 24 hours. I don't take anything, I was referred to cardiology but the only thing I got was a phone appointment, nothing since. I find it uncomfortable but really just try to ignore it and hope it calms itself which it always has so far.
No, I don't take anything. I've had an echocardiogram which showed there is no structural damage, my pulse wave velocity is usually between normal and optimal so that's a good indication that my arteries aren't stiff so I consider that a good marker. I haven't ever been prescribed an anticoag, it's been mentioned but as I've never had a proper consultation with a cardiologist I'm not going to just accept his say so over the phone and take anything. My mother had a TIA at 81, they put her on Warfarin, when she had her next stroke she had a catastrophic bleed and nothing could be done. Had she not been on Warfarin I'm sure she'd have had a better chance. I'm 73 now so I'm happy to chance it lol.
I appreciate your choice. I am on Warfarin and yes, it is a worry that bleeds can happen and it’s a tough decision. However, l wouldn’t like to have a stroke and become disabled, so although l dislike taking Warfarin, l do so for that reason. I understand that, when you have an AF episode, the blood pools in the heart and forms clots. My father had a stroke and it killed him. I am sorry what happened to your Mum. Thanks for your reply.
If l was worried l would call lll no matter what l had been told. Either that or go directly to A/E. Your poor mum does sound as if her episodes are severe and she is a big age, so don’t hesitate to do what you feel necessary.
I get afib just like that and always get my husband to drive me to the big teaching hospital and hour away where they cardiovert me and send me home usually within a few hours. I never go to my local hospital (except when I've needed an ambulance) as they hate doing cardioversions. My HR just gets faster and faster and I start to flake out when it gets to 170 or over. I was also taking an anticoagulant until I went onto amiodarone which is controlling the afib/aflutter nicely 🤞. Hope this is helpful
Your poor mother! That sounds awful and I think she has been very neglected, feeling quite cross on her behalf. Those are not normal symptoms for many people but as she has had tests showing her heart is in good shape (surprising she has had those without seeing a cardiologist though) I do wonder if panic is playing a part. I have bad symptoms at the beginning of an episode when my heart seems to be very fast and chaotic but it tends to settle as time goes on. On the other hand perhaps your mother’s rate tends to be very fast, affecting her BP - you don’t generally get a CV unless that is the case. You don’t say what medication your mother takes? GPs are limited in what they can prescribe but her medication may have been advised by a cardiologist initially. The medication should prevent episodes and/or reduce the rate during them.
I suggest going to the BHF website and searching for ‘breathing exercises’. There were three described in their recent online mag and all help with slowing heart rate and damping anxiety but need practice. That might help until you get a proper review, preferably with an EP or a cardiologist with an interest in AF as some cardiologists are only interested in the plumbing! Best wishes ❤️🩹
It doesn’t sound as if your mum has ever had a heart scan of any kind. The usual is an echocardiogram, which is done to show if the heart and its valves are healthy. Of course, by her age, some heart changes are to be expected (valve leakage, for example, is said to be common over 80).
In general, though, your poor mum does seem to be very symptomatic compared with many people. An elderly friend, now 90, for example, hardly knows he has it, and his AF is permanent. My son’s colleague, like your mum, has both AF and AFl and copes quite well.
I wonder also whether any of her symptoms might be related to high levels of anxiety? That is very common with AF and in my early period was awful, and even now can sometimes be a struggle. It’s nigh on impossible for me to untangle which symptoms are real and which are magnified by fear. I used to have atrial flutter, but more it’s AF with daily palpitations. There’s often no difference in symptoms between the two as these are frequently caused not so much by the arrhythmia at the top of the heart but by the irregular and often fast heart rate of the ventricles, which can make them much less efficient in supplying oxygen to the body,
The consultant she saw is right in the sense that AF episodes usually do pass and don’t often require emergency admission or treatment. Of course not being a doctor, I can’t know, but such a statement seems to be safe to give only if an echocardiogram has been done to exclude any other heart issues that might be of concern. Your mum’s history with AF does suggest though that his advice is sound.
I think, if I were you, I’d press for an echo to be done. Privately they cost about £600, I think.
Welcome to the Forum, I am certain all the members here will welcome you and offer advice based upon their own experiences. If you would like further information; please visit the AF Association webpage; heartrhythmalliance.org/afa or contact our Patient Services Team; heartrhythmalliance.org/afa...
Has your mum investigated an ablation? I just had my second in two years and I’m 82. The first one addressed the afib. I was free of afib for a year, but then the aflutter (which was not new) worsened. The second ablation addressed the aflutter and implanted a Watchman to drastically reduce my chance of stroke and allow me to stop taking blood thinners. I am hopeful of moving past afib/flutter and drugs, and enjoying a good quality of life in my 80’s. Prior to the ablation for aflutter, I had 6 cardioversions for flutter in 5 months. That is not fun.
The 48 hour consideration you mentioned is, I believe, that chemical cardioversion is most likely to succeed in the first 48 hours after the afib episode begins and less likely to succeed later. After that electrocardioversion shows better results. That’s my understanding.
I will say, however, that my insurance (private) doesn’t want to pay for it (and it’s expensive!—I’ll appeal), but if I had stayed with the government-sponsored Medicare, it would be covered almost completely. Medical systems can drive one crazy. (-:
I have to say frankly that I’m surprised your mum’s carers have not explored the ablation option with her, if that is the case. Sometimes ageism shows its unwanted face. In the EP unit at my university medical center, there are EP’s who won’t do an ablation on anyone over 75. 75 is not old! And an arbitrary cutoff time like that denies people like me in their 80’s with AF the chance to enjoy life as best they can in the years remaining to them. I feel so much better when I’m not in Afib!
Thank you SO much for everyone's responses and for sharing your experiences😊 It's all really useful. I think my takeaway is that everyone seems to experience things quite differently and my mum's symptoms do perhaps seem to be on the more severe side of things - whether that's made worse by anxiety or panic attacks, who knows...
Buffafly I'll definitely check out those breathing exercises and coping strategies to share with her, and I think she'll be reassured to know there are lots of other people out there who experience these things and are ok.
Because of her age I'm not sure why you are being told off for her symptoms as they are.
Being on the right medications and AF controlled is the first step.
Sometimes getting past the first step takes courage to alert staff that she is in trouble with an episode.
What are her vitals, BP at rest and Heart Rate at rest.
Medications?
I have never rung 111 or my Heart Monitor for Ambulance.
Sweating on exertion was due to high heart rate 186 on Metoprolol and 156 on Bisoprolol. All the Drs did was to lower dosage of 1st Metoprol and then changed to Bisoprolol and increased dose.
At 2 years 3 months it was suggested this particular private heart specialist.
He introduced CCB Diltiazem. Calcium Channel Blocker.
Bingo my heart rate finally controlled.
With CCB AM. 120mg. and BB PM Beta Blocker Bisoprolol PM which controls BP my vitals look great.
I also lost 6kg.
123/69. 60s DAY. 47bpm PM.
Your Mum's symptoms are pronounced. I don't have the sweating any more.
Are they saying that the flutters are causing your Mum's anxiety?
I was told ring emergency if systollic BP over 180. Nothing about heart rate.
Heart rate is best taken physically by Dr or stethoscope.
Many of your mother's symptoms are common for AF. However a few are not.
Before being diagnosed with AF I ended up in ED (A&E) because of my symptoms. I didn't know what was happening and was concerned I was having heart attack or some other serious heart problems. So I'd agonise over whether to go to ED, up half the night afraid of going to sleep. Very stressful.
When my AF was eventually captured on ECG it was actually a relief, finally knowing what was causing my episodes i.e. knowing I wasn't having a heart attack. My episodes can still be a little disconcerting but knowing it's "only" AF stops me worrying about heart attacks etc.
To me it sounds like you mother needs to discuss her problems with a trusted doctor or arrythmia nurse i.e. someone who she trusts. I also think you should be in there with her to hear the answers and if need be to ask questions you have. That way you can prevent your mother's doubts demonstrated by statements like "she’s also been under the impression" and "he gave her the impression".
If it was me, I would come up with a list of symptoms and questions to discuss with the doctor/nurse, seeking clarification of their responses where required. Also obtain clear guidance on when you or your mother needs to take action i.e. under what circumstances should your mother go to A&E, when to see doctor/nurse again etc.
Also discuss what tests can be done that will assist in her treatment and the treatment options to reduce your mother's AF burden, noting her episodes greatly affect her quality of life.
It's also important for the doctor/nurse to provide assurance to your mother about symptoms that in all likelihood are only disconcerting so she knows there's when they are experienced, no need to worry.
I know these suggestion puts a lot of responsibility on you but I suspect you are already playing a significant support role for your mother.
Sorry, I should have been clearer - whether common or not, all are potentially related to AF. Always remember that we're all different. As a consequence, all symptoms should be discussed with your mother's medical professionals to ensure they are not signs of other problems needing attention.
Vomiting and diarrhoea are probably less common but can be a result of dizziness caused by AF. But they can also be associated with anxiety too - and can also play a role in triggering an AF episode as both can contribute to dehydration - a well known trigger.
She needs to see an EP, the type of cardiologist who deals with electrical problems in the heart which I did privately after the lowest dose of all the surgery could come up with proved too much for me to take regularly. I am 80 and take the Flecainide he prescribed twice daily now and haven’t had an AF episode for well over a year now. I have only been to A&E once when it was diagnosed by the paramedics on the way to the main hospital and that was over 5 years ago now. Of course, we are all different but do hope you can get your mum to see an EP. I found the guy I saw through the Atrial Fibrillation Association - now Support(?)
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