Hi all, I'm curious as to how many episodes of AF people have had in the last year?
How many AF episodes in the past 12 months? - AF Association
2, but I can’t see how this information is going to benefit anyone but I certainly respect your right to ask the question......😀
Well to give you an idea of why I am asking....... I have had 120+ separate episodes ranging from 30 minutes to 16 hours and everything in between since 3rd March last year, every one meticulously noted down, time and duration.
I had a what I know know to be an extremely unsuccessful Catheter Ablation on the 22nd of June. Over 90 of those episodes since the ablation. I am due to have a 'redo' Ablation on Wednesday. I have an 18 year history with AF with a maximum of two episodes in any one year prior to 2020, when it all went south after I had an "unknown virus" in February last year.🙁
So, in answer to your reply I was thinking 120 was a tad to many compared to most people..
The problem is that AF is such a mongrel condition, affecting different people in so many different ways, there seems little point in trying to draw comparisons because the meaningful comparisons are just not there. That said, 120 is high but I think you know that anyway. I assume your EP has offered some explanation as to why your condition changed so dramatically after your ablation and some reassurance that things will hopefully change for the better after Wednesday. Please let us know how you get on, very best of luck.......
I'll certainly let you know how things turn out.
As far as an explanation is concerned, not a thing, just that we need to do it again. It had better be a more favorable result this time as I cant take much more of this. It's like a never ending nightmare. The attacks happen at random times of day or night, random duration and painful/very uncomfortable.
I've had four hours of sleep in the last three nights. It needs to stop!
Sincerely hope you have a bit more peace and quiet in your life after next procedure. It's a horrible condition that many of us find disturbing to say the least.
Have you tried cutting out artificial sweetens and MSG? Helped me tremendously.
Hi l have them all the time too my ecg is very frightening l have chf now caused by my a-fib being ignored. I have to take water pills and blood thinners to name a few. I have just come off Amidorone as my kidneys are showing problems now. So awaiting seeing if they are going to repair themselves. I am now terrified that the AFib and raised heart rate will come and stay again. I am bedridden when it does as l cannot move. For some reason the cardiologist says l am not a candidate for an ablation. I only wish l was! Good luck to you x
I totally disagree. I think it is part of getting to know how AF affects members here. Two!!!
Fine, why not answer the question then?
Gotta agree with you here! Knowing the variability of experience has helped me enormously - I realised I needed to get my OWN head round the condition and learn to live with it. Still an ongoing process.
Yes, I can be quite specific having kept records on my Apple watch. In the six months before my ablation I had 46 episodes lasting on average 21 hours.
In the six months since my ablation, none.
This is a joy to hear Physalis! I'm.on that list, just a matter of waiting. We're things rough and unstable following ablation? I'm a wuss so nervous about that. But in the end I thought 'unless something goes badly wrong I won't be worse off - if it doesn't work I'll just be back to where I was'. And if it does work...
The ablation day was a walk in the park. At the end of it my bp dropped so I had to wait to go home. The following 11 days were not good as I had an attack of migraine every single day. I think this is uncommon but a lot of people have an aura for short periods.
After that, no problems, didn't feel tired or have any pain, nothing that I can think of.
No idea cos I don't know when it's happening 🤔
Thats one of the really strange things about AF, the fact that you can have it without knowing it. Then you have the other extreme like me, where it's like stepping into a hurricane from a calm room.
One of the things that stood out most for me is, 18 years ago when I had my first AF episode and I was in hospital, the general medical consultant that came to see me after it had stopped said "this will be happening and you don't know it" I thought the guy was mad, I answered him and said "their is no way on earth I wouldn't know that was happening".
I've not met a cardiologist yet that can explain that one, trust me I've asked a few over the years..
I have to agree with you there. I certainly know when I am in AF - on average about 3 times a year. However, I could be getting ‘mild’ short episodes without really knowing about it. My husband has persistent AF & it certainly doesn’t seem to bother him - weird. When I have a bad bout it scares me, which probably makes it worse!
I recently had a 72 hour tape fitted and had three attacks and noted them down to the exact minute of start and stop. Absolutely no chance of me not knowing when I'm in AF. The fact that it's painful and or very uncomfortable makes sure of that..
About 12 but one lasted 7 days ☹️ I don’t think it’s the number so much as how it affects you. When I had a holter monitor for a week it turned out I had had numerous episodes I wasn’t aware of so going by that I could also have had 120! It doesn’t affect my QOL enough for me to want an ablation and it’s QOL that counts.
Btw I usually get an episode of AF to go with a virus so I’m thinking you’ve got long ‘something’.
Yep, that makes sense. When I get AF I can only describe it as vicious 90% of the time.
To give you an idea of what I perceive is the difference in the severity between you and I. Up until two weeks ago when I got the date for my second ablation I would have gladly given up my mortgage free house to have it done ASAP.
AF to me is real life torture and that is NOT an exaggeration. That must sound dramatic to someone that doesn't experience it in the same way, but it isn't.
Their is not even a slight chance of me not knowing when it's happening..
This is something GPs don’t understand I think. They are used to seeing a lot of old people who just felt a bit ‘off’ before discovering they had AF and they don’t realise PAF is a totally different beast/monster 👹 Also temperament comes into it, not saying your symptoms aren’t awful but some people can’t cope with the sensation even if they aren’t physically floored. I had a bout of constant ectopics lasting half an hour after an operation and that was torture for me. I hope the ablation is a success this time 💜
Thanks for the well wishes.
I literally can't stand up and walk more than a few feet when in AF , it just hurts more and more if I do. If however it has been going on for at least three or four hours sometimes I can make it stop by forcing myself to walk a relatively short distance and sometimes nothing works and I just have to put up with it until it decides it's time to leave me alone.
One saving grace is, when I have had an attack that lasts over one hour I can pretty much guarantee it wont come back for at least 24 hours after it ends.
I found that. After an episode I could guarantee it wouldn't come back for two days.
That’s interesting (in a horrible way for you, sorry) because severe pain is not usually mentioned as a symptom of PAF. I have mild angina with episodes but the first time that happened I had a blood test indicating a heart attack so I had an angiogram which found my main arteries were clear so the diagnosis was ‘artery spasm’. I wonder if you have had a blood test/angiogram as a result of the pain, or at least an explanation?
I have had two CT angiogram's over the last four years and both came back clear.
As far as the blood test goes,I assume you are referring to a troponin test.
I was rushed to hospital the next evening the day after my ablation and they made a point of NOT DOING a troponin test. There is a story concerning the following 6 days after my ablation and it is a real eye opener, and not in a good way.
It's not dramatic! I have had to work hard not to let it get me down. It's a horrible condition.
Hi sing well I feel the same way I have a motto that when I feel well I feel well and try to make the best of life
Yes, I have ended up the same. I call this 'focusing on the spaces in-between' and have made my QOL as good as possible for those spaces. Oddly, lockdown has contributed too that. I'm still working - I love my work - but less of it and more downtime and of course all happening at home I used to travel a lot.
Literally 100s (yes 100s) of times from January until Oct/Nov, since a change in medication I still get them but not nearly as often.
It would on many occasions happen several times a day, sometimes for seconds sometimes minutes and on numerous occasions 5/6 hours at a time. It was a mixture of slow Afib and the inevitable fast Afib both totally chaotic, in both cases it varied between mild and often painful episodes. It seemed to follow a cycle of a bad couple of weeks, to then to have some respite for 7/10 days but always knowing it would return.
There came a time when it went on for 17 hrs and sorted itself out, followed soon after by a 26 hr episode which needed help, that was when my medication was changed. Just like yourself I know when it is happening, there are numerous signs apart from my heart misbehaving that let me know.
Well, that's my case. However, it would seem that we all have it but to vastly varying degrees. I guess that is what makes it so difficult to cure.
As previously pointed out, AF affects us all in different ways but for the last 10 years I've kept records of the longer lasting events. These I use to understand how I'm getting on with the management. Incidentally I've had AF since 1996 (aged 52) and never had an ablation.
My records show 10 years ago I had AF on average every 24 days which lasted just 16 hours. Each year they've become more frequent and last longer. Last year they occurred every 8 days and lasted 3.1/2 days (yes, days).
Having said all that I would add I'm able to live a relatively normal life with exercise, doing household/garden chores, holidays and the rest.
Hope that give readers idea of my condition.
2 times only. I have improved tremendously, going from 3x/week episodes to now only 2x/year. I'm very pleased. When I do have an episode, I immediately take Flecainide, which will stop the AF after approximately 1/2 to 1 hr. Yay!!
Hi apart from flecanide have you done anything else that you feel has reduced your episodes. Hope that continues for you
I take magnesium with taurine (mag 275 mg, taurine 450 mg) daily. Plus I'm taking a 2x daily tiny dose of Flecainide (25mg). My EP says this dosage is too small, it's like licking a pill! I improved some, to having AF 1-2x/month, when I started the regular Flecainide, but REALLY improved when I added the mag/taurine combination.
Hi do you know what to attribute the reduction and improvement in episodes to?
I had 6 altogether in a 12 month period: 3 months between 2 of them, 2weeks between 2 when I changed my meds, then either 6,8 or 9 weeks between the rest. They typically last between 12-14 hours and I've never self converted without additional medication. This could be due to lack of patience/courage but personally I feel awful once my HR is in AF over 130. I recently found out the atria might be fibrillating at around twice that when you're in AF so no wonder I feel rough...
4 since Boxing Day. Before that one last March!
Hi a very good question I've felt like asking myself I've had af for maybe 25 years increasing over the years I'm at about once every 10-15 days lasting approx 24 hours I find it very symptomatic fatigue breathless on exertion fuzzy feeling head generally unwell feeling anxiety
A good question. I was diagnosed with Permanent flutter in 2006 . Didn’t know I had it butI knew there was something wrong( use to run out of breath suddenly when running down the wing thought it was just get to old 46 for all this ) only cardio version stopped it until eventually cured with an ablation . Still have proxy afib which is like fireworks going off inside so I had an ablation in 2010 . Treat it like a headache now and have a normal life but the last couple of years it’s gone up to 50 times a year lasting around 8 hrs so l might see what they can do about it when we get back to normal or see what medications are available . Currently to take any medication. Did take aspirin up to eight months ago but when working in Germany had to see medical team and the doctor told me I should not be on aspirin for afib phoned my Gp when I got home he said he would check it out then text me to come off it. Haven’t heard anything since . Apparently he went into hiding because of the virus but is now going round care homes giving the Covid jab at £ 22.50 a pop .This was a government incentive get them off their backside and do a bit. Money talks as always!
11 episodes lasting about 8 to 10 hours, only diagnosed December 2019. Very symptomatic and always know when starts and finishes, heart feels as if it is on holiday when it stops, such a feeling of relief in my chest but soreness in chest and upper back ache persist for a few days. I wonder if you had Covid 19 when you had the unidentified virus last year ? Best wishes and do hope that you get some resolution to this soon.
Thanks Trigerminyblue, the good wishes are much appreciated.
I have to admit I am very apprehensive about this second ablation for more than one reason.
Not had an ablation myself but have read on here that the procedure is not anywhere near as bad as the anticipation, I think that you must have been very unlucky when you had yours, also have read that often a second ablation is necessary in order to get any real improvement so hope that this coming one is the charm for you. Maybe you having a really nasty virus /Covid infection just before the last ablation was responsible for your bad experience last time, can understand your apprehension. Very best of luck for Wednesday. Please let us know how you get on.
32 in 2019. Duration between 1 and 12 hours. Previous year I had 2
PS to a previous reply : I looked at your history and you definitely get the prize for detail! As you have dilated cardiomyopathy I assume that accounts for the pain etc?
I have discussed that with my cardiologist he doesn't think it has anything to do with it.
Also the cardiomyopathy is not a dilated as it was in the past and my ejection fraction is much improved from what it was a few years ago. Also the AF is no more symptomatic now than it was 18 years ago when I had my first episode.
Another anomaly is that I had it around once a year for around seven years and then not a peep for six years!
I thought the same as you about the cardiomyopathy but he says no..
I go into AF most days, sometimes more than once, so I'd say I average 300 or so events per year. They run for most of the night a couple of times a week on average.However, unlike many contributors here, they don't affect me much. Sure, sleeping is more difficult and all that fluttering and thumping going on is annoying, but I get no real other symptoms aside from a 15-20% reduction in power when cycling.
3 episodes 2 weeks apart Jan and Feb2020 each about 10 to 12 Hrs each and nothing discernible since.Heart went to 140/160
Occasionally heart flutter afterwards
Am 67 and had first episode September 2019
On meds that seem to do job with occasional side effects if I don't do vigorous daily exercise.
Seems to be different for everyone
I have had 5 episodes from Dec 2019 to Dec 2020 each lasting between 15 hours and 24 hours.I take 1.25mg of Bisoporol but have a slow heartbeat, around 45 resting, and so am unable to take a higher dose.In the circumstances my Consultant thinks it might be worth me having an ablation before the frequency of my AF increases and it becomes permanent.
It isn't pleasant but I've had worse.
About every 3 weeks and lasting 3 days, none as bad as my first episode with it. Not had an ablation just Sotalol and Apixaban. Good look with your ablation.
Hi Xr, useful question that has produced some informative answers. Firstly to answer your question, I have had no episodes in the last year.
Two points which may help:
I have read if you are very symptomatic that is a good sign that the heart is pumping normally and when it isn't it let's you know! In contrast when a heart is not pumping very efficiently and then AF occurs, it does not result in as much change or as much ill feeling.
Secondly, I take Flecainide (200mgs) and have made many Lifestyle changes; one of the latter that I believe has helped a lot (increased recently with Covid) is more routine on all fronts i.e. food, exercise & daily activities including a regular bedtime. Pre-AF diagnosis my life was too stressed and random.
The point about heart strength is very interesting and one I’ve never heard before, thank you,
I have no proof, but I believe to have had 365 AF bouts in the past year, meaning every single night. The bouts last maybe for the whole night, but surely from about an hour after I go to bed, till when I wake up and stand up. The bouts start when I lie on my side. As soon as I turn on my back, the bout would stop, but I mostly lie on any of the sides of the body. No other symptoms apart of irregular HB and some shivering in the chest. I feel this shivering whenever I wake up, but feel much better when I put the hand on my chest. From time to time, instead of AF there is AFlutter, with the HR of probable 60 (never measured) and the atria fluttering at about 120 BPM (2:1). I know, I have no right to complain at all!
So sorry to hear your suffering, and I really appreciate your question. It helps me to hear the variety of incident count and types of experiences. I’ve had 15 episodes in 2020.
My first episode in 2018 resulted in a stroke, then had an ablation in June 2018 after a couple more episodes that landed me in the hospital. None of the episodes since the ablation have been as bad as the ones before, but I have had an average of one or two a month since. Episodes milder since I started a daily dose of flecainide this summer, but I always know when they start and stop (recorded on Kardia) and I feel like I’ve been beat up for a couple of days afterward.
I had 6 in 2020. An unpleasant increase as I had none at all in 2019 and 3 in 2018. So far this year only one. My episodes last roughly between 8 and 12 hours.
Had never heard of atrial fibrillation until July 2020. Had an “unknown illness” end of May 2020 that I think triggered my afib. Was getting afib in ever increasing severity (several times a day for a few minutes to several hours at a time) until an ablation in Oct 2020. It calmed down but now 3 months on has come back daily and seems to be getting worse again. I haven’t identified any specific triggers other than stress which sadly is unavoidable at the moment. Prior to the ablation, exercise was my main trigger. So in the past year, it’s been several times a day since June/July with a brief respite following the ablation when I was totally inactive and not working.
In the last 3 years, I "average" 3x per week and they last anywhere from 1 hr to 30 hours. I have not, nor do not plan on having any type of surgical intervention. I take no medicine on any regular basis, but do have PIP that I may take 1 or 2x a month IF my HR is over 180 and last too long.
On average I reckon on 1 attack every 2/3 weeks. Invariably whilst sleeping and it lasts around 12 hours. It feels like pressure builds up over a period and the attack clears it. I usually feel weak the following day but better after. I am awaiting an ablation.
20 attacks last year, but I broke my hip 12 weeks ago and kinda lost count for a while. Being imobile did stop my favourite cardioversion which consisted of riding my bike up hill to really raise my pulse. Often when it came down after the exersion it went back to normal. I'm 82 years old with a resting pulse of 58 and have been taking Dabigatran for about 5 years. Currently I'm getting more, but shorter sessions of AFib, so my numbers may well soon be higher.
I have to agree with Flapjack. You may have short bouts each of a few minutes and then one long one lasting hours, ( which is more important short and often or long but occasional) So the number may be irrelevant . Perhaps we should be thinking of AF burden. (total duration over a given time scale) I have had AF some 20 years and have short runs each day but occasionally long runs upto a maximum of 60hours. The short episodes do not have any mental impact but the longer durations start to become a mental burden after around 3-4hours. I have no idea how many times I have been in AF but my burden last time I was given a 3 day monitor was 3% of the time. This included a bout of around 10 hours. I am also highly symptomatic but others are not, even to the extent thay are not aware they are in AF and would not be able to give you number of times they are in AF
Like others, I think the answers are interesting, but in terms of being meaningful to anyone trying to assess their particular condition.......nah!
I completely disagree, when you're in pain, cant stand, can't walk around, cant think straight and can sometimes go for three or four days with next to no sleep. You spend your time dreading the next attack and it comes at random times day or night and you know you can't go for much more than 36 hours without an attack.
Under these circumstances, both the physical and mental burden are HUGE no matter how long it lasts, one hour or sixteen hours.
It's pure evil.
I agree entirely. I've had - I'm not sure! nine or ten episodes in the last year but I'm highly symptomatic when it comes and end up in hospital. I am waiting to see an EP and will have an ablation eventually. This became worse when I had some an unknown virus last January which didn't calm down until I was diagnosed with bronchiectasis in October and given a long course of antibiotics. I really wish I didn't know when I'm in AF!
Sounds like we have a lot in common..I'm nearly 15 hours into my latest attack. I've had three hours sleep in the last two nights..
I'm not clear as to what you disagree with. The mental burden is a problem as I stated. I am also highly symptomatic. The mental issues of coping are one thing the other is the impact of your condition on your heart. Those that are asymptomatic won't be aware that they may have a stroke and they are not likely through that lack of awareness being treated to minmise the stroke risk. As flapjack stated as a means of determining the assessment of the condition the actual number of times in AF is not the basis. If your threshold of physical mental stress starts as you indicate as one hour that has no bearing on medical outcome but just your own subjective view . Your condition is unique to you and so is the coping mechanism. Having the condition for 20 plus years and an ablation that was successful (in my terms as it is rarely 100% effective) I have found my mental tolerance has changed with time.
I completely disagree with this.........................."The short episodes do not have any mental impact"
And you must excuse me not dealing with the rest of your reply, which I see as sanctimonious and condecending crap, as I am in the middle of an attack that started at 3.10am this morning and is still going..
My EP tells me I may not be aware of all my AF activity. I, too, don't know what good it would do me to know, as long as he has knows what he needs to know. I'm on a semi-urgent list for an ablation. Omega 3s seem to help me, the cardiac version. The dosage has to be ok'd by my AF pharmacist.
Fair enough, all I can deduce from that is my AF and yours are worlds apart. I have more chance of not noticing I've stopped breathing than I have of not knowing this is happening. Can't move, can't stand, turn grey, chest, back and shoulder pain, and more....
What does your ECG show when you are in that state? I mean, does it show anything different to ‘normal’ fast AF?
That in itself is a little complicated as I also have something called
Left Bundle Branch Block (LBBB) nd that confuses the ECG. What I do know is on at least one of the two occasions that I was whisked off to hospital by ambulance in the three days following my first ablation it showed as Atrial Flutter on at least one the paramedics ECG readings. But on the three episodes they caught on my fairly recent72 hour tape it showed as AF..
The question is, what did a cardiologist make of it? Because the automatic’diagnosis’ on the machine may be confused but the cardiologist should be able to interpret it. One of our members had AF according to Kardia but ATach with frequent ectopics according to her cardiologist. I had AF diagnosed by the machine but Atrial Tachycardia plus something else I can’t remember according to the cardiologist. You might find a website called ‘Life in the fast lane’ litfl.com/left-bundle-branc... interesting.
I'm really not sure what you are getting at. All three cardiologists I have had over the years say it's AF that shows on the ECG's they have seen. None of them have ever even hinted at anything different.
All I am saying is that your symptoms are unusual (going on what other posters have said) and those with such extreme symptoms usually have prompt intervention - pain relief, cardioversion, unless diagnosed with another condition as well (I have a leaky mitral valve and artery spasm and in fact have been offered pain relief before the diagnosis). So just wondering why you are having to put up with it. See posts from Jalia and jedimasterlincoln.
Oh OK, I get it now. No cardio version is possible as I am in and out of AF roughly every 48 hours, it's not permanent, and cardio version as far as I know is given when you are in permanent AF.
I have looked for someone else with the same symptoms and frequency as me but to no avail, that was part of the reason I started this thread in hope of finding someone else who was the same. You are correct about this being unusual my cardiologist is baffled by it and as they openly admit they don't really know what causes AF a lot of the time.
I had the second ablation two days ago and up to now I have had no major problems, a little erratic now and then but nothing to bad for now which is what I would expect. What I have had is two nights sleep without the AF randomly waking me every time I turned over in be which after what I have been putting up with the past few months has been like winning the lottery, and that's not an exaggeration. I have been deprived proper of sleep for months. I can't find the post you are referring to and as far as my ablation goes I will post on here about it in a couple of weeks after I know more..
Thanks for your interest in this, I appreciate it very much..
I have had 30 episodes in the last year each one lasting 8-10 hours and very symptomatic.
I am so disappointed , I went 6 weeks in November/December without an episode for the first time in over a year and thought I had found a solution to frequent episodes with increased exercise and taking a supplement then in December I returned to my usual pattern .
I'm so sorry to hear that, I know exactly how you feel.
I used to get it around once twice a year then I started to take Q10 just for the sake of it, nothing to do with the AF but surprisingly, whether coincidence or not my AF disappeared for six years, now it's back with a vengeance..
More than 20. One session lasted over 6 weeks,although what Id describe as ' low level ' I knew pulse was weird and felt very tired . Other times its the Full Monty and knocks me about.
47 Last year ranging from half hour to +24Hrs. Static Flec not really doing it’s job (although episodes likely would be a lot longer and more frequent without). Year 17 with AF.
I've had four within a year. One about eight months ago. Then I had three about two months ago all three within a 10 day window. Nothing since. Average duration 24 hours. I also have sometimes weekly a flutter episodes that generally last under 10 minutes. Digestion is one of my main triggers and I have found the FODMAP diet very helpful. I have also learned to do preemptive vagal maneuvers when I feel the onset and it seems to work both with the flutter and also PACs. I am almost entirely PAC free now, down from up to ten a minute.
Strangely enough I used to get PAC's regularly but they seem to have disappeared after the ablation in June, so it looks like it did something after all, just a shame the AF is far worse..
I have no triggers for my AF and it ALWAYS starts when I'm either sitting doing nothing or asleep..
Thanks for the reply..
Hey there! 2 episodes in 2018 (6 months apart), 0 episode in 2019, 1 episode in 2020. Looking for an other ablation.
I have had two fairly major episodes and have had couple of other short-lived ones that I only detected through the use of Kardia - this has only served to show me that we might might not always be aware and would, therefore, not know unless monitored full time. Like you, I am always interested to know about other people's experience of this wretched thing.
Thanks for the reply.
It's a well known fact that some people have AF and have no idea it's happening, a lot of people only find out by accident when being investigated for something else. I and the others on the other hand suffer a great deal when I'm in AF. I've asked my cardiologist about this and it seems they have no idea why this is..
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