Symptoms with AF

[Jamontoast]

hi folks - I am relatively new to this forum and have just had 3 days ago my second AF episode. Sitting down in the afternoon and suddenly heart starts beating erratically and HR goes up to 190. Took bisoprolol however as I was incredibly anxious hubby called ambulance and I was taken into A&E with confirmed AF - meds brought HR down to about 110 after an hour and after another 4.5 hrs normal sinus rhythm kicked in. Is this usual? Also I get a really dry mouth and also need to go to the loo a lot more whilst it’s happening- again is this usual? I am still waiting for a cardiologist appointment so wanted some advice (only allowed Bisoprolol as PIP as I have a prolonged PR interval )

[BobD Volunteer]

All perfectly normal especially the loo ! The distresed heart secretes an enzyme which tells the body to shed salt, hence the excess mictuaration (medial term for weeing a lot.)

You will get used to AF eventually like we all did and stop worrying so much. Generally ride it out at home unless you have any chest pain or fainting. A and E is not a nice place to go. Keep well hydrated and relax. Slow deep breathing helps.

[Jamontoast in reply to BobD]

Thanks so much for your reply, that makes me feel better, how do you get used to it? First happened 3 months ago and now 2nd episode this week just searching for answers to why

[bean_counter27 in reply to BobD]

That's interesting. I'll have to pay more attention to it as I haven't associated either with my episodes. It's probably the case and I haven't been switched on to it because between coffee and prostate I go to toilet reasonably frequently anyway. Thanks

[Vonnegut in reply to bean_counter27]

Don’t think the coffee is a good idea!

Flecainide taken as a PIP stopped my episodes in a couple of hours and since I’ve been taking it regularly I haven’t had an episode for over a year!

[bean_counter27 in reply to Vonnegut]

I think the jury is out on coffee and in the absence of definitive advice one way or the other then it really comes down to the affect it has on the individual. Personally, I don't seem to have any problems with 3 or 4 cups of instant coffee a day. I have PAF and if I had any suspicion of it being a trigger for me, I would stop drinking it like I did with alcohol.

Here's a small selection of views and if you Google it, you'll find plenty of info.

"Studies have found that regular caffeine intake isn't associated with AFib" WedMD website 30/6/2022

"Research suggests that caffeine isn’t a cause of abnormal heart rhythms or atrial fibrillation.......However, the effect of caffeine will vary between people." article on British Heart Foundation website (undated)

"There may be individual differences in susceptibility to the effects of caffeine on the factors which trigger arrhythmias in some, and up to 25 percent of patients report coffee as an AFib trigger. Patients with a clear temporal association between coffee intake and documented AFib episodes should accordingly be counseled to abstain." American College of Cardiology website article 2018

"Our evidence from this meta-analysis suggested that coffee consumption had a trend toward reducing the risk of AF in a dose–response manner. Further studies could be conducted to reinforce our findings." Study on National Institutes of Health website 6 July 2022

Yet another area of uncertainty - some say it might be a trigger, others say not, some say could actually be good for AF sufferers. So, unless advised by your doctor to avoid caffeine then I think it's best to be guided by your own experience(s), noting that might change over time too.

[Vonnegut in reply to bean_counter27]

I’d already stopped drinking coffee much before the paroxysmal AF hit and the only way I could “cut down on alcohol” was to stop having a glass with an evening meal but we are all different

[Buzby62]

All normal as Bob says, here’s a link to all the AFA info sheets, I would start with the AF Fact File and Patient Information booklets, the more you read, the more you will understand it and be able to have knowledgeable conversations with the cardiologist or electrophysiologist. And you will learn everyone’s experience is different.

heartrhythmalliance.org/afa...

Also use the search bar to search previous posts.

Best wishes

[Jamontoast in reply to Buzby62]

This link is really helpful many thanks

[Buzby62 in reply to Jamontoast]

Still finding things I haven’t seen, the FAQs sheet is good too

api.heartrhythmalliance.org...

[Mrsvemb]

You need to drink plenty of water whilst in AF. As has already been said, the heart produces an enzyme which makes you pee a lot.

The reason for the dry mouth is probably dehydration. I find it hard to stay hydrated whilst in AF. Just keep drinking the water.

[mjames1]

All normal -- and as other have said, no need to run to the ER for every afib episode except -- and this is a BIG EXCEPT -- you need a home plan in advance how to deal with the episode. You do not want to sit around with a heart rate of 190 just waiting for the afib to stop. This can be counter productive and even dangerous.

A home plan might be taking a rate control medication like bisoprolol or diltiazem. Here, you bring your rate down to a safe level while waiting to convert. A home plan could also be taking an anti-arrythmic drug like Flecainide to convert you sooner.

So you did absolutely the right thing going to the A&E with a heart rate of 190. And until you and your doctor have a home plan in place, the A&E is the safest place to be during an afib episode with a rapid heart rate.

Jim

[doodle68]

Hi jam on toast 🙂 in addition to the suggestions to stay hydrated by drinking water and learning to do slow measured breathing exercises ( there are lots online look up diaphragm or belly breathing on google ) which helps to slow the heart rate/and calm the anxiety I have found distraction helps .

When episodes were short I used to lay down , do my breathing exercises close my eyes and listen to the radio .

When the episodes got longer I couldn’t lay down for hours but by then I had got used to them and carried on doing the things I had to do slowly still using breathing exercises.

[Singwell]

Yes, it's usual. Although with practice you'll find out how to manage without going to A and E. It can take a few hours to knock an episode on the head. Most of us pee a lot during an episode- something to do with the body dumping sodium in an attempt to get back into NSR. Always have water to hand to replace the fluid - might have been why you had a dry mouth.

Have you been given any advice as to what to do when AF kicks off? I see Jin refers to this as a home plan. Many of us are told nothing at the outset and it can be frightening and distressing.

Hopefully here we can help you find your best way of managing but your first next step is to discuss this with your GP. Let them.know what happened- ask for advice on management- if necessary ask fir a cardiology appointment. If you're in the UK I bet you're still waiting.

[Jamontoast in reply to Singwell]

Thanks Singwell, yes you’re right on all counts , no advice on management, no appointment as yet and feeling completely unprepared for when this happens. I will make an appointment to see the GP, thanks for the advice

[Singwell in reply to Jamontoast]

You're welcome. My AF journey started just before the pandemic so honestly without raising forum I'd have been a mess. More than once I had a panic attack...Eventually decided to find out as much as I could. One 'advantage' you have at present is that you've recently been to A and E and with a rather high heart rate. Your GP should.be prepared to talk with you about management and ne t steps.

[Ppiman]

Those sound classic symptoms to me. Out of the blue, no "trigger", racing heart later brought down by a beta-blocker. I doubt you needed A&E but that needs your doctor to tell you, not me. The anxiety was likely sky high, too.

I had an episode a few days ago, my first in the middle of the night. My heart rate went up only (!) to 142bpm, but I felt safe. I didn't take anything as I take 1.25mg bisoprolol daily, anyway. Normal heart rate resumed at about 8.30.

Steve

[Jetcat in reply to Ppiman]

Yes I remember the frequent A+E visits too in the beginning of this afib business.? I got to know 2 of the nurses and we were on first name terms as I was there more than them.?? 🤪

I haven’t been in absolute years, I just it out at home👍

[Ppiman in reply to Jetcat]

It takes a while to know what is "all right", I think. I am fine till new symptoms appear then the anxiety creeps back in!

Steve

[Jetcat in reply to Ppiman]

Yes I totally agree Steve. It was a frightening time for me personally at the start I must admit. The not knowing anything about the condition or hearing anyone with it made it worse I think.? I totally understand anyone confused / anxious about AFIB, thankfully I found this site and have learned so much from all on here over the years and am very grateful indeed.

[Ppiman in reply to Jetcat]

Hear, hear regarding this site.

Steve

[Jetcat in reply to Ppiman]

👍

[Karendeena in reply to Jetcat]

Me too! Can take me 30 hours plus to revert to NSR. In the beginning my heart rate would shoot up to and beyond 170 BPM but lately (probably because of the Sotalol has been around 100bpm which is a bit more comfortable. I was in A & E when I was diagnosed in 2020 and again a month later, not been back since 🤞Would only go if chest pain, breathless or fainting - the advice BobD normally gives along with A & E is for accident and emergency and afib is neither an accident nor an emergency.

[Ppiman in reply to Karendeena]

Another, hear, hear, from me. The A&E comment is especially good.

Steve

[Jetcat in reply to Karendeena]

Yes I’d only visit A+E if I were having any pain etc too. And bob is a wise owl and knows his stuff. was going to say a wise old owl but I’m not going to because I’ll probably get told off.?👍

[Jetcat]

hi Jam. It Sound's normal AF stuff to me.! Try not to worry too much you’ll be ok. 👍

[secondtry]

Best way to stop worrying is to start to take early control yourself: read this Forum daily, book private appointment with a cardiologist and also consider approaching an experienced Alternative Practitioner (I used a Naturopath).

[Jamontoast in reply to secondtry]

Hi secondtry - cardiologist doesn’t do private appointments unfortunately but I have spoken to his secretary and he is prepared to move me from the ‘routine’ list to the ‘urgent’ list so maybe a little quicker to see him now

[secondtry in reply to Jamontoast]

Well done, these days you just have to keep pushing...very diplomatically of course 😆.

[Sixtychick]

When I get an AFib episode, my heart rate soars and so does my blood pressure and the Drs in A&E said I had to go into hospital, if I get an AFib episode, as they need to bring both down. Fortunate.y, I only got it occasionally and now I’ve had an ablation, I’m hoping it’s done the trick and stopped the AFib. Only time will tell.

[Nan1]

Hi, in and out the loo all the time when in AF so very normal. Glad you’re back in normal rhythm

[lizzieloo2]

Hi. I have had an ablation and, touch wood, things are fine at the moment but when I first started with paroxysmal AF, I was terrified - being woken in the night with my heart pounding and jumping and needing the loo every 5 minutes it seemed. After diagnosis and being given a PIP, I began to calm down. Still disconcerting but I realised that actually nothing bad happened. The medics told me it wouldn't kill me but until I realised that for myself I didn't believe it and kept panicking. Take it from me and all the others on here who have been through it for years, you will learn to live with it while deciding on your options with your EP once you get an appointment. Take care

[Eelen]

Hi there, I had my first episode of AF in May 2001, and my latest one last night 🙄 and I would agree with what everyone says about you come to know if you need to go to A&E. As an ex A&E nurse as well as an fellow AFib person, for me the rule is simple - if you don't feel safe or well and you want to be in A&E, go to A&E, if you start to feel faint, or you do faint, go to A&E, and once you've spoken to your gp and / or cardiologist and got your plan in place, you'll feel much more confident making those decisions. When I first had episodes my then gp told me to go to A&E if they didn't settle in 15 mins. Later my cardiologist said give it an hour if I wasn't short of breath or feeling faint. But now I have bisoprolol which I can take if an episode starts, and then I'll sit it out for 90 minutes or so, and if things are starting to settle or slow down, I feel confident to not go in. You will feel more confident dealing with it, as everyone else has said. Hope this helps!

[Jamontoast in reply to Eelen]

Thanks all sound advice and I need to work through the feelings, it’s just when you are ‘in the grip’ of it it’s difficult to relax and I have found myself panicking and ringing 999. I guess as I have more episodes I will get more used to it! Thanks

[kkatz in reply to Jamontoast]

It is easy for us more experienced AFibbers to forget how scary the early days and attacks were.I cannot actually remember how scared I was in 2017.My first onset was inability to walk 10 yards without a wall or lamp post to hang on to.I was not really Aware of heart racing & didn't have any reason to know my heart rate.Off to A & E & given medication and kept in until settled.

I think my problems were with irregularity rather than fast.

If paroxysmal you recognise the onset & rest it out .

You need knowledge & listen to your body.

[Karendeena in reply to Jamontoast]

Along with afib comes anxiety and unfortunately anxiety and panic makes it worse.

[gtkelly]

Afib since late 2019. Since then 3 cardioversions most recent August 2023. On Apixiban permanently since first onset.

Had been on Bisoprolol 1.25mg and Flecainide 50mg x2 daily after 2nd cardioversion.

After 3rd cardio consultant told me to stop Flecainide but maintain Bisoprolol at same dosage.

Use Flecainide as PiP if needed. If doesn’t work go to A&E and request cardioversion.

Arrhythmia returned 3 days ago. Flecainide not effective. Not in any distress but will report to A&E tomorrow morning. 🤞

[Maglyn]

Welcome to the forum Jamontoast! It's been a brilliant help for me to know there are other "sufferers" out there and sharing experiences. I concur with your dry mouth, as I too get that, although haven't had many episodes of AF for a while. Have been to A&E a few times and agree with BobD, not a nice place and best to try and stay put and deal with anxiety. I suffer with the anxiety side and it's difficult, but you'll get there. Good luck!

[JK5AEO]

I experienced the excess urine thing - produced about 500ml every 20 minutes for hours on end.

[Jamontoast]

glad it’s not just me! Hubby said ‘what the heck is going on with you, running to the loo every 5 mins!’