I hope everyone is well and getting support from this site which is a great help.
I have recently been diagnosed with AFib after an irregular heartbeat picked up on an ECG, although I guess it is still very much early days on the diagnosis, as it was only a week ago.
I see a lot on here about people describing an AFib "episode". May I ask what this is describing (I assume it can present itself in different ways), as I seem to have no such episodes myself and feel fairly consistently the same,
The only thing is I get some occasional lower left arm ache, sometimes coupled with a very slight feeling of wind below the sternum and occasionally even milder aching in the chin. There appears to be no particular trigger for this and it is gone in less than a minute. This was the main reason I contacted the GP as the first time this happened it worried me as it was more severe than it is now.
No other symptoms than that other than a worsening performance on hikes which I had put down to getting overweight and unfit. Home blood pressure testing consistently showing 2 out of 3 readings with an irregular heartbeat.
Thank you in advance for finding the time to reply.
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jimtomato
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Maybe you are in persistent AF? Or asymptomatic apart from the aches? Many people feel pretty terrible if they have been in Normal Sinus Rhythm (NSR) and then suddenly go into AF and they would then refer to an ‘episode’ after they go back to NSR. Even if they don’t a period of AF that comes and goes can be called an episode, though ‘attack’ is probably what the poor people with bad symptoms would call it! The pain you refer to would probably be caused by your heart speeding up more than it can cope with. Not wishing to be alarming but I think I should say that if the pain worsens or lasts longer than a few minutes/keeps recurring you should go to A&E to be on the safe side. When I had my first known episode of AF I was in hospital for several days. The staff kept asking me if I had chest pain. No, no chest pain…..didn’t think to mention I had a bad pain in my throat and jaw!
Oh yeas, the vagaries of the English language !! 😱
Right at the start of my AF journey, 15 years ago now, my Cardiologist back in the day used the term 'asymptomatic' in his letter to my GP. This label has stayed with me and these days, I really don't know if I have an AF " event". This is the point .... I've never described my AF event as an "episode". Also being asymptomatic I never really know if I have a true, clearly identifiable AF ( even on Kardia) turn, episode or event. All I do know is that I feel mysteriously unwell (totally crap) with no clear cut symptoms ............... its why I refer to AF as being all things to all folk.
There is one exception however, if I eat a food, usually my evening meal ... which then proceeds to kick my heart off with all sorts of thumpings and whammies leading to my quivvering bag of earth worms wriggling away or squadrons of butterflies in combat in my chest at about 2 or 3 am which can then be clocked on Kardia with all sorts of written analysis. Also leaving me wide awake and thoroughly exhausted.
Indeed my start of my AF journey was similar to yours ........."When I had my first known episode of AF I was in hospital for several days" - all I can remember was this absolutely drop dead, young, gorgeous lady Dr. in A & E and her telling me she was going to give me an injection and I will feel like I was gonna die ....... BUT with a reassuring smile - she confirmed I certainly won't.
Thank goodness nowadays I only act as a host to AF now once every 4 or 5 years . Current health problems are much more sinister, COPD.
The 4 to 5 years is a rough average, no science - no timetables/ schedules ... just roughly. Never actually scientifically plotted it.
The how .................. right at the beginning I rejected all notion of an ablation. No way. Instead I opted for the medication for life route. I also found that food was my trigger and having got fed up with coventional medical wisdom as promoted by the NHS I consulted a Nutritionist.
Using the wisdom and experience of the Nutritionist and her diet plans and the education she gave me I gradually got the AF under control aided and abetted by my medication programme .......... TO THE POINT where I experience AF very infrequently averaging around 4/5 years. As I write, my last event was actually April 2022 .......... sorted. Last April, I did have some stuff going on but my Cardio Consultant advised these were ectopics and tweaked my medication a tad and all is well. Still no full blown AF. No further follow up required.
Yes John, that answers my question very fully. I suspect my trigger isn’t food but more likely to be stress or anxiety about upcoming events. But very useful to know how you’ve managed your AF. Thank you.
I think in someways I have been fortunate in having found food as the trigger. I rather think anxiety/ stress is a much harder demon to deal with. It certainly would be for me. I do wish you well on your journey.
Your comment has made me suspect the 'gonna die' description could be commonly used among medics. It was said to me once but thankfully I escaped the experience as, in the event, I wasn't administered the injection 😄
The first date I had with AF had me blue lighted to hospital as I pretty much collapsed with my HR above 250.When I got to the hospital, they advised it was AF and they would have to give me medication.
Having seen numerous TV hospital programmes, I actually asked the Dr if they were going to give me the injection that would make me feel like I was dying (more than I already felt 😊). She was slightly amused, said no and asked where I'd got that idea from. 24 Hours In A&E to blame. 😁
I think the injection was a liquid, Amiodrone. I use the word injection, it was a drip via canula into the back of my hand. My HR was up around 160 and the lovely Dr was trying to get it down ..... took hours even to get it down even to around 120 ish. I ended up in hospital for another 5 days.
Yes, adenosine, when in hospital for treadmill test the doc said i would feel like i was dying for about 10 seconds, i started deep breathing to try and divert my attention, that was no good, drug too powerful.
Still as clear as mud to me , even readong the information you posted...as to which category I fit... .I still don't understand what an episode is either. Although I think I get a few days every month where I feel ghastly , tired and can't sleep etc. I am constantly out of rythym if I hear my heart beat in my ears. I don't wear any sort of monitor or watch.
Worse thumping heart beats after eating a big meal. Or when I lie down.
On beta blocker and apixaban since July 24. ....but never seen a cardiologist. Only one phone call after 6 months from diagnosis ...I feel at sea with it all....
If you have persistent AF then an ECG will capture your AF at any time, if you have paroxysmal AF then you have normal rhythm when the paroxysm (episode) ends so it’s much more difficult to capture during an appointment. In 3 years none of the investigation appointments captured my AF but I recorded 40+ episodes of paroxysmal AF on my Apple Watch.
You really need to speak to an Electrophysiologist, have a good read of the AF fact file to help understand the condition, knowledge is the key but it takes time.
Thank-you. I think it must be persistent. As I was experiencing thumping chest all week prior to pre op (short) ecg (after a fall and wrist break). It was quickly picked up and my symptoms remain much the same at times, with the the thumping heartbeat through my back. On and off, after meals or in bed.
But yes...it doesn't help not ever seeing anyone face to face to get clarification.
Well done on finding this forum so quickly, it took me ages!
I would set up a private consultation with a cardiologist you trust ie recommended. Bear in mind there are no off the shelf solutions, what is needed is a full and frank discussion with the cardio and then a joint decision bearing in mind each medic has their favourite solution but in the end its about your Quality of Life and your gut feel as to which way to go.
Hello Jim. I was diagnosed with PAF in 2007 & have been hospitalised a few times over the years due to an 'episode' & returning to NSR after a few hours. However, I'm replying this morning with 'live' symptoms of my AF. It's 6am & I have just woken & jumped out of bed for the loo - a very short walk across my landing. This small activity has made me super breathless but regardless, I have ventured downstairs. Returning to bed (& climbing the stairs) my legs feel like lead, ton weights from this second small activity & I'm still pretty breathless and, not to be underestimated, my heart is thumping. BP at 137/84. Kardia mobile recording began with a HR of 46 bpm, quickly changing to something much faster with the final tracing averaged at 93 bpm, so HR all over the place in one recording. I'm due to take daily meds at 8am. I am not overweight & am otherwise fit, healthy & active. Such symptoms are nevertheless frequent & have become part of daily life & no longer phase me. I do not feel any pain. I'm currently listed for an ablation.
It might be helpful for you to get a Kardia (if you have a smartphone) and the app, and then you will have a way of seeing what your heart is up to- then you will know for sure whether your heart is in permanent A fib or whether it is still having “episodes” as I used to do before I was fortunate to get prescribed a drug (Flecainide) which has put an end to episides for me, taken regularly. We have found we are all different (I’ve never been overweight) but this is a very friendly, supportive and helpful forum. Welcome!
I've had AF for about ten years and was told early on that they would do an ablation but as I have a kidney transplant it would cause problems with access via my groin where my kidney is plumbed in. So, no way was I taking the risk of any harm coming to him and I just put up with the 'episodes' that could last up to 17hrs. Having them ten to twelve times a month was limiting my day to day living as I would be exhausted for days afterwards. Pain/pressure in my jaw and down my left arm, feeling like an Elephant was sat on my chest and couldn't take a big breath.
I gauge the severity of the AF's by three main markers -
Stage 1; Peeing for England - every ten minutes.
Stage 2; Peeing and Pooing for England - as above
Stage 3; Peeing, pooing and throwing up for England - continuously!
When it gets to Stage 3 I am done! It's a case of getting to A&E to get some fluids for my kidney.
I took the plunge and had an ablation last March which hasn't been totally successful but the episodes are nothing like as severe as they used to be and will pass on their own within a few hours. So I guess what I'm saying is, that we are all very different, with very different challenges, you get to know your own body down to the tiniest twinge.
Good luck with it Jim, do as suggested above and speak to a consultant and make sure you are informed about what is happening, could happen and plans for if it gets worse. Best to be prepared, like you no doubt are on your hikes. 👍
Strewth, how extremely unpleasant. I'm glad the ablation has improved things for you even if it hasn't entirely solved the problem. Also glad to know I am not the only person who has had only partial success with ablation. I'm coming up to seven months of a rather volatile blanking period. After the first three weeks of being AF-free, I spent the next 5+ months bouncing in and out of AF (including some of the longest attacks of fast AF I've ever had; two trips in an ambulance). I'm back on the list for a second ablation.
BUT, in the last three weeks it has calmed down, with only some overnight episodes (flutter, ectopics? I don't get up at 3am to fiddle with the Kardia). I'm actually thinking about cutting back on my drugs for the first time (not completely stopping yet, and yes, I've consulted the CRM nurses). Perhaps I've just had a very long blanking period and it will keep improving. If I were offered the second ablation in the next few weeks, I'd still take it.
May I ask what is a 'blanking period'? And how is it volatile? I have so much to learn about terminology and like to stay informed. I really hope that things improve for you and you get your second ablation with no more problems.
For me, it would be just nice to be able to make plans and stick to them! I used to go out doing photography with my friend but had to stop as I had a 'do' and had to drive us home in full flow which wasn't ideal.
The blanking period is the settling-down after ablation as you heal from the procedure and your heart stabilises in normal rhythm (we hope). For some people it's barely a few weeks, for others it may be six months or longer. It looks like I'm in the 'longer' category. Volatile because I have had a lot of breakthrough AF, not just the odd episode.
There is a fact sheet about it somewhere on this site. I'll see if I can find the link and reply with it.
Yes, I hear you about having to cancel plans. My cancellation rate over the past 18 months has been about 75%. I'm still not working, for that reason: 25--30% attendance at a 9-to-5 job would quickly get me sacked, and even being freelance, I'd have to keep breaking commitments when AF kicks off again.
If you google "blanking period after ablation" there will be numerous articles from proper sources (BHF, big hospitals, etc). If you read the summary written by AI, be sure to look at the proper sources for fact-checking -- AI can produce some huge mistakes.
For me, an 'episode' is when I'm in low-level AF, so that means: my heart rate isn't extremely fast, I'm not very aware of palpitations, not breathless or dizzy. I have often been in AF with my heart rate in normal range or only slightly elevated (normal for me is 50--60; anything over 60, at rest, is a heads-up that AF might be on the way, and sometimes I'm already in AF at 60--65bpm) and just carried on. So, asymptomatic.
An 'attack' is basically 'fast AF': heart rate over 100, very noticeable palpitations, quite breathless, sometimes dizzy (this used to be worse but I haven't had a bad dizzy spell for years).
An aching arm and chin/jaw would be out of the ordinary and cause for immediate investigation. Chest pain is no the only sign of a heart attack, especially in women.
Episodes are the times of afib in between the times of normal. Like you, I get quite achy before during and after. And neck and jaw pain was a (very troublesome) feature for me. And arm and hand issues. In fact, I've been chasing neuropathy and neck issues all the while. All the best to you. Lean into the support here. Good people.
hello JimTomato. Was diagnosed about 4 years ago, when symptoms 1st appeared, within 24h of receiving Astra Zeneca COVID vaccine, with heart rate around 180, by emergency dept. Dr. told me it was paroxysmal and recommended blood thinner (apixaban) to help prevent stroke and a beta blocker, which I've been taking since. My triggers are food and now i think singing as well. My episodes are increasing in frequency, 3 now in last 3 weeks.
As to your question - episodes - they're changing some, but are a minimum of 3h, up to 8h, at nighttime, now accompanied by frequent, abundant urination (6), a feeling of weakness and pounding in chest. Because I have pulsatile tinnitis - ringing in my ears in beat with my heart rhythm - i can hear the arrythmia, very rapid, very irregular. I can manage to sleep through portions of it, focussing on being calm, centered, breathing, etc. I practise QiGong and energy psychotherapy. They help me manage anxiety around these heart issues, which are more nerve-racking than the breast cancer and cancer gene mutation I've so far survived for 19 years.
I went into an episode in bed in the middle of last night, now afternoon and all i can do is sit, the fatigue is terrible especially the heavy jelly like legs i always get.
Unless I am mistaken I am the only resident physician on this forum who has a history of AF.
I am concerned about three symptoms you described , namely aching in your chin, left arm and some odd feeling behind your sternum. Those symptoms can be angina, a lack of blood supply to your coronary artery blood vessels. If it was me I would be proactive and request an immediate workup to include at the minimum an exercise stress test with an echocardiogram.
Assuming that workup is normal, then the other issue that needs to be addressd is whether the same symptoms could be manifestations of TIA ( transient ischemic attacks) prelude to a stroke that accompanies the diagnosis of AF and requires the possibility of being on an anti-coagulant.
Essentially I would be hustling to get immediate medical attention.
Hugheart resident physician with AF history. You also might find my BIO to be of interest.
I need to look into magnesium. In the last 18 months with persistent AF + now the blanking period, I've had bloodwork come back with deficiencies in P, K (last year, after a very nasty stomach bug) and (last month) vit B12, but not Mg. Asked both GP and cardiologist previously whether they recommended any supplement in particular; neither had anything to say.
My sister also has AF and asked her cardiologist (she's in the US, I'm in the UK) about supplements. He didn't recommend anything either, except to warn her off one particular supplement which he said was often recommended for menopausal women, "but it's the last thing you should take if you have AF." She can't remember what it was. I suspect ginseng.
The Mg I am using listed in the book is not available outside of the US. I have used Mg glycinate and Mg gluconate. Make sure they do not contain other ingredients like zinc or calcium which interfere with absorption of Mg. I highly recommend you read the book because there are several other components which are part of the protocol , one of which is your willingness to self monitor your EKG 3 to 4 times a day. Each for 30 seconds or 2 minutes a day. It took me 24 weeks to convert to sinus rhythm and the book explains why you have to be patient. Whatever u decide it is a must to run the protocol by your health care professional to make sure your other medical conditions allow you to be a candidate.
Description of my AF "episodes" - I had two episodes and they were the same - A sudden extreme dizziness and fainting feeling that appeared "out of nowhere" - the first time as I was preparing breakfast. Got myself to hospital (somehow) to be checked out - was there overnight and they diagnosed me with Afib. Symptoms resolved while there. After release, made app't with an EP. No other symptoms until two months later when I had the exact same extreme dizziness, fainting feeling and nausea and got to the hospital again. They released me after symptoms resolved hours later. Co-incidentally my app't to see the EP was the next day - and two days later was cardioverted to NSR. Am thankful that (at this moment) don't have such extreme dizziness where trying to walk was like walking in a pool of jello... Good luck.
First time mine showed up was 2015 during my attendance at my Mother’s funeral. When your heart takes off on you at a 200 bpm gallop you know something is up! It wasn’t “officially diagnosed until 2020 upon prep for thyroid surgery following the recent cancer deaths of my oldest daughter in November 2019 followed by my wife (46 years) in March 2020 . The episode prior to surgery, so much was going on I didn’t even pick op the symptoms. Now it’s more about side effects of the meds than it is about the AFIB.
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