What were your symptoms if any when first diagnosed with AF?

[Natalies2803]

Hi all, I’m new to this forum and haven’t actually been diagnosed with AF, but am currently being investigated for it. I’ve had problems with a fast heart rate for around 6 years now but the fluttering and skipping feelings I get only come a couple of times a year. I am currently suffering with intermittent symptoms over the last 7 days and am having a 24 hour monitor fitted next Friday to see if they can pick it up on there. My Nana also suffers from the condition and was diagnosed at around the age of 30. I might be jumping the gun a little here as like I said I haven’t been diagnosed, I’m curious to see what people’s symptoms were if any when they were first diagnosed! x

[BobD Volunteer]

Atrial fibrillation is an irregular and irregular heart beat. It can be fast or slow but usually fast. Quite a few people have AF creep up on them and have no symptoms (they are asymptomatic) and are lucky if they are diagnosed at a regular health check as AF brings with it increased risk of stroke. Sadly many people only find that they have AF after the stroke hits.

For those people who have paroxysmal AF ( it comes and goes) the onset of an event is usually quite recognisable. An irreegular pulse (easily felt at wrist or neck) , an increased need to urinate, shortness of breath, dizziness and fainting and in some extreme cases even chest pain are all typical of the condition usually combined with fatigue.

AF is a mongrel condition which presents in a very indivdual way to each and every one of us so there is no real "standard symptom".

Why not go to our main website heartrhythmalliance.org/afa/uk and read all about it.

[Natalies2803 in reply to BobD]

Thanks so much for your reply. My GP did mention Paroxysmal AF as a possible cause as it is episodic and I’ve had a viral infection a week or so ago and he mentioned that sometimes with the condition, infections can bring on symptoms. I’ve had a high heart rate for around 6 years on and off and generally it’s around 100-120 when I present at the doctors. They caught some skipped beats a year ago when I was having symptoms on an ECG at A&E but they said it was fine and it was never investigated it further. So now it’s happening again and the tests begin. Only time will tell I guess. It’s just such an uncomfortable feeling especially when it’s been on and off for over a week. I feel drained. I’ll keep reading and hopefully I’ll have some answers soon. Thank you again!

[AP224]

I had my first noticeable symptons in Nov 18. They were chest flutters lasting approx 5-10 seconds. I would have several over the space of about 30 mins and then they would disappear. Initially these occurred every couple of days or so which I initially dismissed. I observed the elevated heart rate whilst wearing a monitor at the gym and subsequently started to wear the monitor outside of the gym to see what was happening. When the flutters occurred my heart would go from resting to approx 200 bpm and then return to resting after 5-10 seconds. I visited my GP and subsequently a cardiologist. The symptoms were very intermittent which meant that I had to wear a monitor for 72 hours to ensure the cardiologist could see what was going on. I had several episodes whilst wearing the monitor so that enabled a preliminary diagnosis prior to referral to a specialist EP at Papworth. I was prescribed Bisoprolol and after a couple of months the symptoms stopped. As I am keen to avoid long term medication I opted for a cryoablation. I had to take Apixoban for at least a month to thin the blood and reduce stroke risk before the ablation which I had in July. After a further 3 months I stopped taking medication. Apart from a few ectopics which I seem to have daily I have had no other symptoms. I know it is early days but so far so good and I am glad to be off the meds! Hope this is useful!

[Natalies2803 in reply to AP224]

Really useful thank you. Mine seems very similar. I have episodes that last around 30 seconds ish and this will happen quite a few times within a couple of hours and then settle down again, the last week it has happened every day at different points in the day. I don’t always notice it is unless I’m at home and not generally busy, I work on the maternity ward so I only really notice a difference at work when I get breathless whilst giving patients a lot of information, sounds strange but I can feel a sensation in my chest then I feel that I can’t catch my breath. The GP has said I’ll have a 24 hour one and if that shows nothing they’re going to do a 7 day event one where I can press it when I have symptoms. I know I won’t get much out of this site at the moment but it just helps to know that I’m not alone in feeling these strange sensations, even if I don’t have a diagnosis yet.

[Padayn01 in reply to Natalies2803]

i get that exact feeling when im talking my chest just caves in and starts hurting, really bugs me I've had a ablation 16 weeks ago and get skipped beats still and a few runs of irregular heartbeat which woke me up in weeks 6 and 16 of my recovery

[Natalies2803 in reply to Padayn01]

I’ve never had it where it’s woken me up yet but I’m a really heavy sleeper so that might be why. Mine sometimes can be worse after I’ve eaten, but I’m not sure if that’s just because I’m sat and settled and notice it more. The breathlessness has just gotten worse over the last week though. I didn’t really notice it as much at first but it’s not a nice feeling at all! How was the ablation and when were you diagnosed if you don’t mind me asking?

[Padayn01 in reply to Natalies2803]

Ablation was horrible i was awake for the whole thing, almost 3 hrs under the table something i never want to do again (unless i have to of course) diagnosed on xmas day last year when i had a fast heart rate and ended up in Hospital, still on beta blockers to this day and see my cardiologist this Friday

[Natalies2803 in reply to Padayn01]

Oh that sounds awful. I’ve had an operation previously awake and it was horrendous so I can relate to how you must have felt. How has the medication been for you? Hope everything settles down soon. Do you mind me asking how old you are? Do they only do ablation if it’s quite bad or if you’re a certain age? Sorry for all the questions. Just trying to get a good grasp on everything.

[Padayn01 in reply to Natalies2803]

Yeah no problem with the questions, i'm 39 and they said ablation was my choice as i only had one episode of AF so i decided to go for it as Q.O.L was rubbish. I think they do ablations to anyone regardless of age

[Padayn01 in reply to Natalies2803]

Medication been ok for me since i switch beta blockers

[BobD Volunteer in reply to Natalies2803]

Ablation is just one possible treatment. Since there is no cure for AF all treatment is only for quality of life. Many people have very successful ablations with zero problems but sadly as with all things a few react badly.

[Polly159 in reply to Natalies2803]

I'm sure all health trusts etc have different approaches, but I think generally (and it certainly was for me) they try, as in mist things, the least invasive/least problematic options first (unless there are serious issues). That meant for me beta blockers- bisoprolol first the sotalol neither of which worked and finally amiodarone which had cut down length of episodes from 2-3 hours to 30 to 60 minutes, but not the number- still 2 per week. I actually saw a consultant today who offered drug continuation, ablation or pacemaker. I chose to go for ablation (Apparently I just make the cut-off point in terms of weight!) With a 6 month waiting list (West of Scotland), 70% chance of success, 5% chance of complications. Continuing until then, if course with the amiodarone for at least some relief, have changed to a plant-based diet and trying hard to exercise more (difficult when you're tired lot of the time!) Only other things to say probably are I was put on anticoagulants (rivaroxaban) as soon as I was diagnosed in May 2018; AFIB begets AFIB and BobD's description of AFIB as a 'mongrel condition is spot on - there's no rhyme or reason at times and e everyone has different symptoms and drug and treatment responses. All the best Polly

[sotolol in reply to AP224]

Lovely result. So good to hear.

[Lahodges10]

Hi! Welcome to the forum! I’m quite new myself...was only diagnosed 3 weeks ago. Looking back I have had symptoms for 4 years, fast heart rate, breathlessness, fainting, dizziness, and generally feeling very weird when an episode happened. Ended up in a&e lots of times, had a three day r test 3 years ago but was fine when I had it on and no further action. Collapsed whilst on holiday three weeks ago, resting heart rate of 157 and was blue lighted to the local hospital. Paramedic managed to catch the afib on an ecg, which I now have a copy of and give to my doctors I see.

I’m on verapamil which actually seems to have REALLY helped, I’m also taking magnesium. I’m actually having another 3 day r test fitted tomorrow. I’m 35 and every time I see a doctor they seem shocked that I have afib and say I’ve probably got svt, I do pull out my ecg and that shocks them more 😂🙈

Good luck with getting a diagnosis. I have to say I was relieved when they finally have me a name for this horrible thing that has been ruling my life. Keep us updated,

Lauren X

[Finvola]

I had symptoms which got progressively worse for about 6 or 7 years before my PAF was finally caught and diagnosed. I had bouts of feeling very tired and breathless but thought it was my lungs giving bother, never considered it was my heart.

Bad bouts felt like someone was squeezing my lungs as I couldn’t breathe for a couple of seconds repeatedly. Gurgling and burping, passing gallons of wee and diarrhoea. Heart rate I found out after diagnosis was between 120 and 160 with episodes lasting from 40 minutes to several hours.

Thank goodness for Flecainide which has stopped all that for the last 5 years and counting . . .

[Natalies2803]

I know what you mean! I had the 24 hour one about 4 years ago and it didn’t show a thing at the time but I wasn’t having the flutters or thuds back then, it was just a high heart rate. My highest I’ve had noted was around 140-145 I think and when they caught the skipped beats at A&E I thought oh well they must know what’s going on now and then they just referred me back to my GP. I went 4 months ago because I was exhausted all the time and they were supposed to refer me to Cardiology but last week I found out they never sent the referral. It’s been back and forth for years and now that it’s getting more frequent I’m just getting more concerned. Just want them to tell me what the problem is so it can be sorted out haha. I’m only 27 so I think they always just brushed over my high heart rate like it was just the norm for me. I’m definitely going to keep pushing now but I’m lucky that I’ve got a good GP who’s taken over my care. How do you feel now that you’re on medication, were there many side effects or did it seem to suit you what they gave you? Thanks for sharing your story with me! X

[Lahodges10 in reply to Natalies2803]

I’m much better on the verapamil. I’ve had zero side effects and it just seems to have agreed with me - thank god! It appeared to work quite quickly and I began to feel much better within a week. I have had some very mild thuds and flutters but nothing compared to what I was having. I’d be sound asleep and it would wake me up...touch wood that has now eased off for good. I am inclined to have the ablation if I’m offered it by my local trust (I was offered it at West Suffolk where I was admitted on holiday) but it was too far to travel, I worry of the long term effects of afib. Whilst I know in itself it is harmless after time it can cause problems and as the heart is a muscle I don’t want mine wearing out too soon...I have my children to think of. I think I would tolerate the surgery well and would hope it would get rid of it.

I would keep pushing, you know your own body...I know mine and by the end of all this I was beginning to question myself! Especially when the doctors couldn’t find what was going on...thank god it happened when the ecg was on in the ambulance. I was lucky but god knows how long it could have gone on for.

I hope you can get some answers soon. In the meantime rest when you can, keep stress levels low and look after yourself xx

[Natalies2803 in reply to Lahodges10]

I’m glad you’ve found something that works for you! Here’s hoping it stays that way for you. It’s hard isn’t it because each NHS trust will offer something different and waiting lists etc come into play as well. I feel the same as you, I have 2 little ones and I do sometimes think why me at this age but I just have to plod on. I can’t remember what it feels like to not be tired, I’m not sure if that’s more being a mum or the actual problems I’m having though 😂

Everyone’s so kind and helpful on here so I’m really glad I posted! Thank you xx

[CDreamer]

1st episode circa 2005 - on a 40’ yacht in middle of Atlantic 500 miles from nearest land. Felt rapid, irregular heart beat - at the time I described the Popeye cartoon when he sees Olive - heart felt like pounding out of my body! Felt very weak spacey & just ill. Lasted only about 3 hours - went away & I forgot all about it as just too much to do on a yacht 24 hot sailing with 4 people.

Nothing for about 18 months when on holiday - similar symptoms only worse. I begged my husband to call a doctor- but he just told I would be ok. I thought I was going to die I felt so bad. Lasted 36 hours & then stopped as suddenly as it started. Again I ‘forgot’ about it.

Finally diagnosed 2007 by GP who had been a cardiologist & who I trusted way beyond the cardiology Dept I was referred to - had a 1-2 episodes/year, always self converted. 2009 started drug treatment - Bisoprolol & Flecainide - didn’t get on with Bisoprolol. Drugs stopped being effective so 2013 & 2014 - 2 Ablations, 2018 Pacemaker.

Heart is structurally sound, if misshapen & no CV or valve problems. I live with AF but it’s not my life.

This fantastic forum has helped me beyond measure - far more than the treatments because the people here keep me sane & I know I’m not on my own with this & we can share experiences- good and bad, educate & share information, signpost and most of all just be there for each other.

[Natalies2803]

Oh wow, so yours was a couple of years before they diagnosed it. I feel like I’m going to be going round in circles as I have done already so far. I’ve had problems on and off for the last 6 years and they just put it down to pregnancy or that I just generally have a high heart rate. I hope things are a little more settled for you now after your journey with AF.

Yes same here every episode I’ve had so far has just stopped on its own. I read a comment earlier where someone described it like a bag of frogs wriggling and it’s so true to what I feel when it happens. Like a cluster of different sorts of thuds it’s so strange. I think it’s more frustrating that because it isn’t a constant thing that is happening to me it’s harder for them to pinpoint. I keep thinking by the time I have that monitor put on next week it will probably have stopped by then anyway. This is the longest I’ve had it in one run before. Usually a couple of days and it’s gone.

I love that it doesn’t rule your life, I worry sometimes as I’m still so young and have 2 young children. I’m just so tired all the time lately, the last GP I saw said that because I have a high rate almost constantly that my body will feel like it’s jogging all the time and that’s why I’m drained.

I came across this forum accidentally when I went was just looking for some more information on AF. I’m glad I posted as I was just stalking old posts at first but I wanted to know if anyone’s situations were similar to mine and it sounds like they were. Thank you for sharing!

[CDreamer in reply to Natalies2803]

If you don’t know about it already - Kardia! It’s a small device which takes an ECG with help of a smartphone. The doctor/engineer who invented it occasionally posts on here

See healthunlocked.com/afassoci...

No more need for 24 holters - take your own ECG & keep a record. I was finally diagnosed after getting an ECG at my GP surgery as by the time I waited in A&E & they hooked me up I was back in NSR! And it never happened when I had a hospital recorder! I now have records since 2013 which my EP finds very useful. I can email the recordings to him & he will get back to me if I need to change anything - cutting out the middle man because going through the NHS protocols is absolute ludicrous, resource wasting & ineffective for PAF.

Kardia is available on Amazon for less than £90 but the new 6 lead won’t be available here until Jan 2020 - I’m definitely updating as my poor device is decidedly dogeared!

Many on this forum use & most doctors will now accept Kardia as evidence but they will still want a 12 lead they have taken to be sure!

By the way - infection nearly always will trigger episodes for me - currently have a chest infection & having few short episodes - especially when I do too much.

FYI shop.gb.alivecor.com/?ds_rl...

[Natalies2803 in reply to CDreamer]

Thank you so much! I had noticed the comments about Kardia but had no idea what they were talking about, I assumed it was something the hospital or GP had provided. I’ll be looking into this if they don’t find anything next week.

I had a really nasty viral infection and chest infection and was on antibiotics and as soon as I felt better all of a sudden my symptoms started. It was so strange, I’m on day 8 now and have had some flutters and thuds but nothing major really today, just on and off. I just think a 24 hour monitor isn’t that reliable if I’m not actually having a problem then. And there’s been times I’ve been sat here while it’s happening thinking shall I just got to my nearer walk in centre so they can hear it and so I don’t feel like I’m imagining it 😂.

[CDreamer in reply to Natalies2803]

Meant to post this link to this post of a few days ago healthunlocked.com/afassoci...

The other very helpful Cardiologist who posts videos is Dr Gupta from York Cardiology- all his videos are on YouTube but people post them here as well so look out for them.

All the best CD

[Natalies2803 in reply to CDreamer]

Thank you so much CD, you’ve been a great help x

[Jalia]

Had my first symptom in 1993 at age 48. I consulted my GP as I thought I had a chest infection as I was feeling unusually breathless out walking.

Had ECG in the surgery and the biggest shock of my life to learn I had a heart condition with 2 young children and husband away working up in the Scottish highlands.

A great deal has happened in the ensuing 27 years. I have been very fortunate in having excellent cardiologists and EP.

[Natalies2803 in reply to Jalia]

I’m glad you have a good team looking after you. Is your AF settled now and are you on medication? I’ve known for a couples of years that something wasn’t quite right but I just assumed that it would have been picked up on my previous 24 hour tape a few years ago so never really chased it up. Until this episode which has been the worst I’ve had so I’m definitely going to make sure it’s looked into properly this time.

[Jalia in reply to Natalies2803]

I'm able to say that my AF is settled as I have been free of an episode for 18 months ....a record in recent years ! I have been taking anti arrhythmic drugs for all this time...27 years.

I'm not what could be called a typical case though 🙄

[Natalies2803 in reply to Jalia]

Good for you! Let’s hope it stays that way 😊

I think from reading everyone’s stories vary a little so it’s good to hear a variety of situations.

[Abseil]

My first awareness of it was palpitations and breathlessness but I was suffering really badly with flu at the time and it was 111 that advised I should go to A&E where they wizzed me into resus with a HR of 167. It was a total surprise - I just thought it was a bad chest from the flu!

[Natalies2803 in reply to Abseil]

A few people have said this too and my GP also said that symptoms are worse when you’ve got/had an infection. I have a bad viral infection and chest infection last week and it started up a few days after that. Crazy!

[Hidden]

Love the specs.....make you look very studious! Lot’s of good advice for you to consider. Generally, AF is not a common problem for younger folk unless they are heavily into extreme sports such as competitive running, cycling, rowing and the like. Also, if they have, for want of a better description, an abusive lifestyle with alcohol and drugs which I’m sure is not the case here, but it would be wrong not to mention it. Because you have some heart issues in your family, it’s quite possible that it’s all their fault, so maybe no Christmas presents for them this year!!

However, at least you will know what to expect and how best to minimise the effects of AF if that is what is finally diagnosed. You sound like a very positive thinking person and I’m sure that once things are more clear, you will find a treatment plan that will help you to lead a relatively normal and long life.

Let us know the outcome of your tests and then we will be able to help you further......all the best....

[Natalies2803 in reply to Hidden]

Ah thank you! Unfortunately they are not a fashion statement but an aid to make me less blind but I’ll take the compliment haha 😊

Yes I’m not into extreme sports so that’s good and no heavy alcohol or drug use. Although I do love a good coffee but I’m having to steer clear at the moment as it seems to set it off again!

I think generally I’m quite level headed with the possibility of it being AF and I’m not going down the path of misery and thinking it’s the be all and end all. It’s more just uncomfortable and I’m aware/worried when it’s happening but I think it’s more just human nature or my body letting me know something’s not quite right. I’ve already had a conversation with my Nana to let her know her faulty genes aren’t wanted here 🧬😂 on the plus side she’s 75 and still going strong!

Thanks again! I’ll keep you all updated x

[Hidden in reply to Natalies2803]

Fanbloomintastic!!

[SpritzerAce]

Hi there! For me the typical symptoms would be irregular heart beat and pulse and palpitations. Normally my heart beat will be fast and of course irregular that I could "feel" it flip flopping in my chest! I have a Kardia and when an episode strikes I could see the reading such as from 88 bpm it will suddenly jump to 120 bpm and I would "lost" a reading with just a flatline showing and it will start being irregular again 90, 111, 136, 102, 94 whatever So far I have managed to self convert to sinus rhythm within 24 hours. I would feel very uncomfortable, tired and anxious all at the same time. Like everyone's been saying here, try and just relax and do the breathing exercise to help calm ourselves down (easier said than done ..ha ..ha.. I know!). AF itself is not life threatening but it increases our risk of stroke. Once you know more about this condition you will be better prepared emotionally to deal with this situation. For me personally, this forum is my go to place and I am just grateful to everyone here who always offers me words of comfort whenever I am down with AF or simply when I need to rant about my condition. Wishing you well and all the best in managing this condition.

[Chris1945]

Hi, first indication I had, of what has been classed as paroxysmal AF, was waking during the night and turning onto my left hand side....immediately I felt my heart rate gallop and it didn't stop, a call to 111 had me in A and E within the hour. Echo and cardiograms showed nothing wrong. But even now, it pretty much always starts during the night, I've experienced a couple of daytime episodes after eating something that my body doesn't like so I remain convinced that what I eat and when I eat it are the main factors for the onset of AF with me. Hope everything gets sorted for you soon...all the best x

[SpritzerAce in reply to Chris1945]

Hi there. I actually am quite convinced that what I eat is the main factor of my onset AF. I especially can’t take dairy and hot and spicy food and oily ones.

[Natalies2803 in reply to SpritzerAce]

I thought I was imagining things when I told my dad it seems to happen more after I had eaten something. I never thought it could have had an impact on it. I thought it was just coincidence to be honest. Thank you both for sharing your experience of AF it gives me a good insight into all the different symptoms people have. I’m hoping they can pick it up while it’s happening as I don’t fancy waiting another few years until it’s found.

[Chris1945 in reply to Natalies2803]

Check out something called the vagus nerve which can be a cause of afib and finding a good Naturopath who could advise re which foods to avoid might also help. Like SpritzerAce, dairy is an issue for me... ...and another drastic measure I've taken is that I try not to eat anything after 5.30, 6.00p.m. at the latest, very antisocial but I don't care my health and wellbeing comes first! x

[Natalies2803 in reply to Chris1945]

Yeah, I have noticed a few articles about the Vagus nerve being a possible cause. So today for example I felt it very slightly at work but only for a few moments so generally been an okay day. I’ve just eaten a bowl of spaghetti bolognese now I’m home and boom within a few minutes it had started up again. So frustrating.

I completely get why you would do that, and if it makes it better for you then everyone else will have to suck it up. It isn’t antisocial, you’re just looking after yourself 😊 I find it hard to not eat after 6pm as I have children with after school clubs and a busy job so I eat when I get the chance most of the time 🙈 x

[KMRobbo]

Slight fluttery feeling in chest and lower neck for a few moments, then fast HR, 130 to 190 resting

[Natalies2803 in reply to KMRobbo]

Yeah I get a flutter too, sometimes it’s worse than other times and is more like thuds that make me stop whatever I’m doing for a second.

[kathie659]

I thought it was hot flashes...rapid heart rate, flushed and warm...one night rapidness didn't stop.

[Natalies2803 in reply to kathie659]

I hope you’ve managed to settle it now. How long ago were you diagnosed? x

[Janith]

Weird heartbeat ... kind of like a double thumping ... very fast as well ... quite terrifying ... immediately went to emergency room ... they gave me intravenous meds and it stopped in four hours ... it was awful!

[plopper]

I was diagnosed with Afib after stroke. I am asymptomatic.

[Desanthony]

Waking up breathless in the night has always been first sign of AF for me.