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Anyone else have a highly irregular pulse?

micwal93 profile image
25 Replies

Hi everyone. As I said in my last post, my dad went to hospital because he passed out at home yesterday. Whilst at hospital, a cardiologist diagnosed him with Atrial Fibrillation, based on the ECG recordings given by the ambulance. They told him to go home and he'd be given a 48 hour tape to monitor what his heart is doing.

He's had another episode today, after we had dinner. This time he didn't feel faint or light-headed at all, but he's been in AF for a number of hours now, and his heart rate is very irregular (but not racing, as such). Its skipping beats very frequently, and when the heart pauses it restarts again with multiple beats, goes normal for a while then starts being irregular again. The episode he had yesterday lasted for some hours, he tells me.

I myself have AF, but I rarely have any episodes. However, when I have it, my heart becomes very fast and erratic, almost constantly over 100/110 (yet, the first time I had it my heart rate was very similar to my dad's yesterday). His seem to last for hours as well which is something I've never experienced (mine usually go away after 20 mins). He doesn't seem too bothered by it, he just doesn't want to faint again, and he's not breathless or light-headed at the moment. Its a strange one, does anyone else have something similar to this? If his pulse continues to be so erratic tomorrow should I take him to A+E to get checked out? Bear in mind that he was in hospital earlier on today, as he stayed overnight for monitoring.

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CDreamer profile image
CDreamer

To go to A&E or not is the perennial question.......  When I was faced with this I asked my GP for guidelines as my experience of going to A&E whilst in AF was they did nothing but monitor me until I reverted into NSR.  My GP recommended the following criteria - if I fainted, if my BP was consistently under 90/60, if I had any chest pain, if I felt cold and clammy or if the AF continued for more than 48 hours with a high HR, if HR exceeded 200.  

I preferred to be comfortable in my own home rather than sitting in A&E (which is an emergency service). 

However, everyone is different and some people do go to A&E as they like the comfort of constant monitoring - I self monitor with BP monitor & AliveCor anyway and I was able to email my results directly to my EP if I was very concerned and he was good enough to get back to me with advice.

I did have several admissions with one to acute cardiac ward for monitoring - but again no treatment, just monitoring and sent home when feeling better.  

It is a very personal decision.

micwal93 profile image
micwal93 in reply to CDreamer

Thanks for your insight! He's quite an active man so he just wants to get on with stuff, but he feels like the AF limits him from doing anything.

CDreamer profile image
CDreamer in reply to micwal93

Absolutely get that as I am in the same position, I get frustrated as well.  Pacing oneself is essential, accepting when you just need to rest and doing what you can, when you can.  Hard lesson to learn.

ange1960 profile image
ange1960 in reply to CDreamer

Cdreamer this reply has helped me this morning.  I have recently been diagnoised with PAF and have had 2 hospital stays of 2 nights in the last month with AF.  Nothing was done other than monitor and change to medication. The hope was my last change, (5mg, twice daily of Nebivolo) would be enough to keep the AF at bay, but I have been in AF since 10pm last night.  I don't have any significant chest pain, BP is not super high (I also have BP monitor & my new alivecor monitor which arrived Thurs) so am able to monitor too.   My last hospital visit, arrival by ambulance as had chest pain and was clammy (GP Phoned ambulance) was awful.  

Dept was absolutley run of their feet.  People everywhere.  Was monitored on arrival and then sat in hard chair in various waiting rooms for 16hrs until a bed was found in Cardio ward (I had requested to go home, but was told I would have to sign discharge against medical advise forms if I did and they really did not recommed it).  I self medicated during that time as no further ecg's were taken and no observations done.  I would have been so much more comfortable at home.  I then spent 2 nights there and was discharged with a change to meds.

My concerns this morning are I am still in AF, it is somewhat uncomfortable, but no worse than it was when it started. Do I just 'ride it out at home' or do I need to seek medical advise?  

I am still waiting to undergo further tests and investigations on the heart as there are some concerns there is a degree of heart failure too and waiting for out patient appointments with Cardiologist.  I don't feel I've ever really had a 'proper' informed conversation with a cardiologist or specialist about the AF and all my conversations have been as a result of emergency arrival at A&E.  I think I have gained more infomation from this forum and the AF Association website.  

How long is it usual to stay in AF for? Is there anything I can do at home that will help the heart back to NSR?

Micwal, I'm sorry to 'hijack' your post. I do hope your Father's AF settles down. It's a worry isn't it, not knowing what to do for the best.  If he was on the cardio ward for his monitoring and was only discharged yesterday I'd be inclinded to phone the ward and ask if they can give some advice?  it might be worth a call and could save a visit to A&E.  I hope things settle down for him soon.

CDreamer profile image
CDreamer in reply to ange1960

I sympathise, your experience mirrored mine and even when I did have all the tests and saw a cardiologist I didn't get much further as my GP seemed to know more than the cardiologist about AF.   I was diagnosed in 2007 by cardiologist and put on Bisoprolol, recommended to then take Sotolol (which I refused), then Flecainide as a PIP, as AF progressed the episodes became longer in duration and much more disbilitating so by 2013 I had had enough!  I then found this forum - attended the patient's day (in AF) came home and immediately asked for a referral to an EP ( Electrophysiologist) in London - I got a name from the list on the AFA - paid £250 for a private conversation and had the first sensible conversation about AF treatments.

How long is it usual to stay in AF - everyone is different so times vary from a few moments to being in AF all the time.  

When to seek medical advice - when you are concerned i.e.- any of the conditions in the above post or when you are concerned - banging fists on desks (figuratively speaking) does get you more attention so be a pest to your GP- mine was my best advocate and rang the cardiology dept on more than one occasion on my behalf.  I think I stayed too quiet for too long.

I am lucky in that my company still pays for my medical insurance but many people on this forum find they can see the EP of their choice privately and still have treatment on NHS.

EP immediately prescribed anti-coagulants (cardiologist asprin which even my GP was exasperated with) and arranged an ablation within 2 weeks.  First ablation didn't work but the second performed 3 months later did and I am now AF free.

My learning from this experience was that unless you see the specialist in arrythmias i.e.:- EP you spend years going round in circles as although there is an epidemic of AF, unless you are in cardiac arrest or your AF is considered immediately life threatening, trips to A&E will not usually forward your treatment - Unless an EP happens to be on duty and called down by A&E and attends and decides to fast track your treatment.

At a talk by my EP locally at our local major hospital, the point was made that treating AF was very expensive and why would you as it wasn't life threatening?  The reply was to improve quality of life and to reduce the load on A&E - maybe the best reason FOR going to A&E is as a number for political statistical leverage! LOL

There are some very ill informed people out there who do not realise the worry and debilitating affect of AF and too few EPs and cardiologists with the capacity and resources to offer proper support and treatment.  But oh, when you find one - such a relief!

Go well, best wishes CD.

Rienij70 profile image
Rienij70 in reply to ange1960

Hi Ange1960, when I get an episode it usually last about 20 hours.  My GP advices if you feel unwell, like dizzy or clammy, nauseous or short of breath or chest pains. go for help. I try to stay calm and drink glasses of water with ice cubes in. On advice from one doctor, this sometimes helps shock to the system I presume. But it is very difficult as i don't like to make a fuss. I keep telling myself that I am on warfarin and so I am protected up to a point. Against blood clots. Which is the main threat. Wishing everybody well and a peaceful weekend. 

ange1960 profile image
ange1960 in reply to Rienij70

thanks Rienj, I'm not on any blood thinners other than asprin. From what I've read about AF, asprin is not recommended but it was prescribed from a hospital stay by a cardiologist!   I scored 1 on the Chad scale so they felt I didn't need blood thinners, but I do worry about stroke risk more than heart attack. I have a strong family history of heart attack and strokes at early(ish) age (55-65). Its worrying, but don't think I will gain anything clinically from being in hospital.  I am planning on trying to ride this out at home and hoping I don't become clammy and feeling unwell as I have during last 2 episodes.  

I just feel being able to rest here (which I can't do in an A&E dept) will be more beneficial.  I also do not like making a fuss and do not like the thought of a 3rd hospital A&E visit in a month.

I am going to try the cold drink and see if that helps.  Thank you

Rienij70 profile image
Rienij70 in reply to ange1960

Hi Ange I fill the glass up to the brim with ice cubes than add the water. And drink it as quickly as I can. Two to three glasses. I was on aspirin For a time,  but had some blood clots in my arm, than in leg after an episode of AF. so my cardiologist put me back on  Warfarine. Wishing you well. Rienij☺️

seasider18 profile image
seasider18 in reply to Rienij70

Others have reported that cold drinks bring on their AF.

Like you a friend of mine was told to drink an ice cold drink if he did not have his medication with him.

PeterWh profile image
PeterWh in reply to ange1960

You can insist on going on an anticoagulant.

ange1960 profile image
ange1960 in reply to PeterWh

Well I ended up spending the day in hospital yesterday.  Saw local GP at Saturday surgery who insisted I go in.  I think it was the best outcome for me.  I saw a cardiologist who seemed to understand AF.  I had 300mg of Flecainide which stopped the AF and decision has been made to start me on Anticoagulants, I requested Rivaroxaban rather than warafin, and apparently because I asked, they can prescribe that (but don't routinely unless a patient requests it..!)  They have also given me a supply of flecainide to take if/when I go into AF again.  

I also asked about specialist, and explained I was planning on a private consultation with an EP specialist in Leeds as I felt the Consultant Cardiologist I had been assigned to (only because he was Consultant on duty on Cardiac ward when admitted) was not the best choice for me. His area's of interest and speciality are not AF or Arythmia.  I had a notebook in my bag where I had written a lot of information and names of 2 specialist in Leeds I thought would be better suited and questions and queries I have had since being diagnoised, but had not had the opportunity to discuss with anyone.

He said my diligence in research should be commended and has changed my consultant to the one I requested and I should have an appoinment with him within the next 2-3 weeks.  (I also told him I had got most help and information from this forum and AF Association wesbite).

To save me a return journey today to get the Rivaroxaban my GP has been requested to prescribe those at an appointment I have already booked with her in a couple of days.  I will be able to discuss minor concerns I have about anticoagulants and hopefully will put my mind at rest.  I have to be honest, I think I will be more worried about a dibilitating/disabling stroke than by any risk/life style changes to be made taking Rivaroxaban.  (but would welcome any advice or input regarding this medication).

Oh, he also said that he thought I am someone who would need an ablation, but I'm not even going to think about that at the moment.

Pheww its been a whirlwind 8 weeks since this all started, but am now hopeful I am on the right track.

PeterWh profile image
PeterWh in reply to ange1960

Hopefully you are and it certainly not looks that way.

Yes ask the questions of your GP but personally am 1 million percent sure that I want to be on an anticoagulant for life (I am only 61 now). Look at some of the responses I have given on Anticoagulation to see the issues and my thoughts.

I have found that consultants, doctors and other medics are very impressed and love it when someone is organised and has done their research. When I was taken by ambulance last summer to A&E the paramedics and the A&E staff and doctors were very impressed that I had everything readily at hand in a thick A4 binder, all separated up. They were immediately able to see differences to my normal abnormal ECG which helped diagnosis. They also went through it in detail because they  included things in the discharge notes that had happened 9 months earlier but that I had not told them about. 

seasider18 profile image
seasider18 in reply to CDreamer

As you say it is more comfortable at home and you usually come out of it OK.

Last time I got to A&E  at 9pm and was told I could go home at 3.15am and that was a quick visit. Previous ones have been up to 14 hours. I think a lot depends on who is around on any particular night. I had one where there was a consultant who did a very thorough examination and scans that I though was mainly as a teaching exercise for the young doctor.    

BobD profile image
BobDVolunteer

AF is a mongrel condition and one must never judge others on how we ourselves feel. It is not a given that heart rate will be irregular an very fast. Many people have slow AF like your father's so there is nothing odd about him.

I think the advise re A and E is valid and from personal experience would always ride things out at home than clutter up and emergency service unless I had chest pain or passing out.

What is important for your father is for him to read all he can so that he understands this condition he is now stuck with.  As you know it is not life threatening but it can be very distressing until one understands it.

Janna501 profile image
Janna501 in reply to BobD

Someone has mentioned an "alivecor" machine, could you tell me what it is please , and would it help to get one ? I' m a Newbee as you know ! Thank you .

Dodie117 profile image
Dodie117 in reply to Janna501

Alivecor is a small device that will take an ECG and tell you if you are in AF. You need a mobile phone or tablet to use it and the results can be saved and/or printed.  They are useful to keep an eye on your condition and catch any episodes thast may occur.  You can show them to doctor/ep to demonstrate any episodes since previous visits.  Amazon sell them, I think but google it and you will get plenty info.  

seasider18 profile image
seasider18 in reply to BobD

Although I told 111 one time that it is not that kind of chest pain they sent a paramedic.

When I once phoned 999 early in the morning as my heart rate and BP were way up they refused and said to take a taxi. I hung up and she bravely phoned back to say that if I felt worse on the way to A&E not to hesitate to ring 999 again.

I notice that he had an episode after eating. Could that have triggered the event? It would with me. I have to eat very small meals more often and never fill myself up. I don't eat large or even a normal meals at all now. I get AF with a normal heart rate, although it can go faster sometimes if stimulated by food / sugar / caffeine / alcohol / stress etc etc!!! 

Perhaps try eating small for now?

Koll

Lizty profile image
Lizty in reply to

Yes.... af after food is very common.  I now eat much smaller meals and keep off heavy starchy food including potatoes... and also avoid acidy foods...

My af is like your father's.  Going for ablation soon. 

When you first have these problems after finding out you have AF it is a constant battle in your mind.  Frustration, anxiousness, bewilderment....

Do I go to A&E, is it bad enough?, will it stop as soon as I get there? there are people worse off than me in A&E, I'll give it another hour, I'm wasting valuable nurses/doctors time.....all these and more questions go through your mind when you are deciding whether to take any action with an irregular heartbeat...certainly was with me.  I often felt a bit of a fraud when I'd turn up. "I've got a bit of a wobbly heart, the doctor advised me to come here" I'd sheepishly tell the A&E receptionist.  But each time I went I felt justified in what I was doing....I'd be led in (usually put in a wheeled chair) and turn left straight into the 'majors' part of A&E and put on monitors with a shot of flecainide in my arm.  I felt more sorry for my wife who had to sit for hours on end while I had a little doze.

Eight times I went to A&E before my ablations.  That was back in 2010/2011 so I don't know whether the advice has changed but I was advised if the AF lasted more that 4 hours get myself to A&E.  I got told off once for leaving it over 48 hours because doing so prevented them from carrying out a cardio-version (a risk of pushing a blood clot through after 48hrs). My pulse was usually only 100/110.

Even now I would certainly say if you are on no medication to control the heart symptoms or anticoagulant I'd get myself off to A&E.

micwal93 profile image
micwal93 in reply to

Yeah I understand, I seem to be riddled with problems with my heart that have all started within the last year, seem to be getting a fairly slow heart beat as well as the afib episodes so I have no idea what's going on with me, but with my dad he's actually been given an anticoagulant. I can't remember what its called but apparently its a new drug.

seasider18 profile image
seasider18 in reply to micwal93

How slow is slow? Mine was in the 40's for years but then went into the 30's with 3.5 second pauses between beats and I now have a pacemaker. Frankly I felt better with it in the 40's than in 'normal' 60 to 80 range.

Someone when I had my pacemaker fitted had felt well with a heart rate in the high 20's that was only found when he had a pre assessment for a hip operation. 

micwal93 profile image
micwal93 in reply to seasider18

Lowest I recorded it today was 49, but that was after I awoke this morning, so whether that affected it or not I don't know. But throughout the day it averages between 50-70, but it doesn't usually go down to 50, only when I've been laying down a while. 

Strange because I don't exercise very much at all these days. I used to exercise very regularly, went to the gym practically every day, but I doubt that has anything to do with it. Its never gone into the 30's before, or not so I've noticed, and I only caught it the one time going into the 40's but I'm fairly sure I've gone into the 40's in the past.

seasider18 profile image
seasider18 in reply to micwal93

A nurse at A&E asked me if I used to be very fit. When I asked why she said because your heart rate is so low. I denied ever having been fit far less very fit.

My GP is proud of his 40's heart rate but he still runs Marathons in his 50's.

dave1950 profile image
dave1950

I get pretty much that kind of AF. Been every couple of weeks since diagnosis in December. Lasts about 36 hours then goes back to normal. I feel pretty much ok so I just ignore it since I've been told it's not life threatening. I find it best to not worry much and get on with things. Everyone is different, with this it seems so much of the advice on here may not be appropriate.

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