Hello all i wondered if any could help settle my mind about afib. I am a 48 yo guy and have suffered many years with palpitations and such i was in and out the doctors all the time and always got told its stress, depression, i have had quite a few 24hr ecg recorders and a few 7 day ones and was never really able to capture the palpitations in action they said i just had a few eptopic beats nothing to worry about and the recent letter basically said they didn't want to see me again.
A few weeks later i was taken into A and E with a rapid irregular heart beat 230 bpm was recorded and the pulse was totally erratic and lasted a good few hours. I was just about to have the cardioversion done when my heart suddenly decided to go back into a normal pattern and my heart rate slowed back to normal lvls. I was told they would refer me to cardiology again but have heard nothing and that was 6 weeks or so ago and i'm totally stressed out they don't want to seem me because that is what they said in the last letter.
I also keep getting every now and then only what i can describe as an electric shock feeling in my heart that makes my whole body jump and my head goes a bit weird for a split second almost like a dizzy feeling i can only think its like the blood not getting to my head for a split second does any body else experience anything like this.
I am so worried all the time that its going to put me back in hospital and i feel like i'm climbing the walls and no one has really explain anything to me other than being told it was an episode of afib and given a box of beta blockers, no one said how long i was on them so i can only assume its for life? who knows i just feel utterly in the dark about it all. Thanks for reading
Jason
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Pepsicoke
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Hi Jason. 230bpm is far to high. The beta blockers should help. I have no idea what your budget is but is it worth investing in something like a kardia to record these moments? However, the hospital must have on it on an ECG - and they let you go without further checks???
Yes i have a Kardia my heart rate was bouncing from 140's to the max recorded of 230 they have all the recordings i guess i was in there a while. But no one has really told me anything other than it was afib. But i'm still getting palpitations and odd jumps and bumps from the heart, they also seemed to have increased at night but not sure if these are anxiety born lol.
Best advice is go to our main website (Atrial Fibrillation Association)_ and read till you drop and then come back and ask us questions. There is a wealth of information you help you there. as knowledge is power.
Regarding the hospital, sadly referal times are quite long at present up to six months in some cases so you may have to chase.
The first thing to learn about AF is that everyone's AF is different and it affects everyone differently. Some are very symptomatic and some don’t know they have it.
Knowledge is the key to finding the right treatment plan and this forum helps a lot to gain the knowledge, also the reading material on the AFA main website will help. I would start with the AF fact file. Here is a link heartrhythmalliance.org/afa...
The more you read and understand the better as it does feel like nobody cares in the beginning and takes you a while to understand why afib appears to be low priority in the cardiology department.
In my opinion you need to have a conversation with an Electrophysiologist (EP), a cardiologist that specialises in arrhythmias. I spent almost 3 years taking the medications under cardiology before seeing an EP (see my bio)
What you are describing is how most of us on this forum started with AF. Please don't panic, my AF started 19 years ago and I know what a shock it can be when you are told your heart is doing odd things. It's most unlikely to kill you and the more you worry about it, can make your AF episodes go on for longer it's like anxiety feeds it.
It's good that your hospital now has your abnormal heart rate episode recorded, they will send that on to a consultant for his opinion. How long did your episode last for and how did you feel?
heya, it lasted for 4 hours i think and my pulse didn't match my heart rythem It was honestly like a box of bouncy balls released inside my chest it was a very odd feeling.
My heart used to feel like a big floppy fish desperate to get out of my chest. It's scary when our hearts do that isn't it!
I had no idea about the condition at all until I joined this fantastic forum. Now I've learnt so much over the years. Times are changing though and the posts are very different to what they used to be because members often have aids like an Apple watch or Kardia to help them know what their heart is doing. I knew right away that these aids would be no good for me as I can be neurotic enough without them, they would increase my anxiety and of course that would make my AF worse. We used to have a lovely American nurse on here called Grandma who was a volunteer and she told me to get a stethoscope which I did. Now I rarely check my pulse, just ignore it when it speeds up and it soon calms. I can understand anyone new to the condition being unable to do that, think I'd had AF for about 14-15 years before I could do that.
Take care and feel free to as any questions, it's always said on this forum that there is no such thing as a daft one.
If you are waiting on an appointment for Cardiology, I personally would get on to their secretary, give her the details and ask if she can do anything to speed up the appointment, its amazing what these secretaries can achieve. I also like to 'take charge' of my own destiny where possible, I find I am better able to cope when I do that, positive action!
No wonder you are stressed. Chase that cardiology appointment. Then chase it some more. Get your GP involved. Go back to A&E if you get chest pains. Be a nuisance 👍
Sometimes appointments and promises need following up.
I do it all the time and I always have success.
You should have been given a report of the last consultation.
Are you under a Dr as well?
I'd get A into B and ring the hospitaland say that you haven't heard anything.
What BB med are you on. Metoprolol is not helpful for Afers.
Ring and tell them what you were promised. They will look up your Hospital No. to be it started. Sometimes internally moving you gets stuck and you need it to move.
Do take my advice. A shock it seems like your heart stopped. In which case TO THE HOSPITAL Pepsi!
You're not alone in having had similar, but that won't make you feel better. First, here's something to realise and focus on: the issues you are experiencing will be electrical conduction changes in a relatively safe place in your heart: the atrium. This is what so many of us here suffer, with AF or ectopic beats to varying degrees. These things almost always wax and wane, and only become persistent in older age (mostly),
The effect of these on the important part of the heart, the lower chambers (or ventricles), is less than is often imagined, hence the fear the condition causes to arise: anxiety is the hallmark of these conduction issues and, of course, it sends the heart rate soaring all on its own thank to the rush of adrenaline and such else into the system, which has an immediate "fight and flight" impact on the heart.
Those two lower chambers do the main work of the heart and continue pretty well whatever chaos is happening above. The ventricles aren't always fully able to ignore this chaos and so might well beat too quickly and rather erratically, but your life is not at risk while this happens - at least in the vast majority of cases (in a few, the effect on BP is severe enough to need hospital treatment, it is true).
An elderly good friend in 91 tomorrow and has had permanent AF for may years. He remains well.
You need to have an echocardiogram to reveal that your heart is otherwise sound, but it will be.
No - only warfarin. His heart rate is within normal range, and he says it's about 10-20 beats / min more than it was before his AF began. When I use my Apple Watch on him, it is often around 80-85bpm.
Both A&E and Acute care referred me to Cardio last October after I was admitted for 4 days with a rapid very erratic heart rate. I'm still waiting - and yes they do have he referral but the say the wait time is 12 months. My GP did another referral in Jan/Feb.
Hi Pepsicode.
Spend £300 on a private appointment face to face with a local Consultant Electrophysiologist EP, within the next 14 days. Nothing beats the undivided attention and quiet 1:1 explanations you will get together with a clear ongoing plan for further management
You will need an ECG, tell his secretary to get the one done at the hospital which showed a rate of 230.
Also a private echocardiogram at the consultant’s preferred hospital which costs £600 and can be done immediately which I recommend because it allows the consultant to give you full advice about your treatment options. Insist (nicely) on the earliest possible face to face discussion with his secretary. When you are told she is not available, go to the private hospital and sit adjacent her office. This will allow you to find out how things work which will reassure you, also her full contact details because secretaries can be hard to find.
If a coordinated echocardiogram isn’t possible, have it done in advance in the same building. If it’s at the time he can discuss the findings with the echocardiographer and come back to talk to you.
You don’t need any further (private) investigations (always find out how much they cost) at this stage. All future NHS investigations can be arranged by your GP or his NHS secretary.
You have been treated poorly. Like everyone else in the early stages you are scared. This will pass as you get yourself better informed, There are resources like NICE and the AF forum. Also AF forums in the USA.
With the NHS, which from a patient perspective has always been a bit of a shambles, you should find out how things work so that you can best represent yourself,
Right now, TAKE BACK CONTROL, you’ll feel so much better and remember KNOWLEDGE IS POWER. Read about all aspects of AF, it will serve you well for the rest of your life. AF will always be with you, even if just lurking. AF is never cured but can be managed by a good Electrophysiologist so that it recedes into the background allowing you to get on with your life and do that Everest ascent you’ve planned for years.
Hello Jason - argghhh reading your post - yeah all familiar unfortunately- I was in a similar position - read loads of info mostly found from the AFib group here - bought a Kardia, took loads of readings - GP pretty useless and wanted to know why I kept calling as I was on Apixaban and nothing else they could do. Booked a private appt with an EP (£200), went along - he looked at all the kardia readings and told me he could see I had paroxysmal AFib and also signs of Flutter - I was very symptomatic - episodes every 4or 5 days that would last minutes to hours but always reverted on its own but was becoming less functional as time went on - he put me on a colleagues waiting list for an ablation (on NHS) - took 9 months but had an ablation in Dec 23 - few blips for a number of weeks afterwards but since settled no AFib now in over 6 months - so these are words of positivity and also to encourage you to keep battling to get taken seriously and to uncover the options that ARE available to you to improve or resolve this damned thing - best of luck !!
Just a general observation here, but your name of "Pepsicoke" leads me to think you may drink a lot of either beverage. If they're the full sugar type, maybe they're contributing to your palpitations. If they're the diet version, then the additives and artificial sweeteners are a-fib triggers for some. Just a thought. I hope you find a solution soon.
If you record 230 you should go to A&E or call out paramedics - this will hopefully help to bump you up the list with the cardiologist - make sure A&E know that you are waiting on an appointment. Also contact the cardiologist's secretary and ensure that your referral letter has got there - just a polite question and then explain how poorly you are and ask if you could be contacted in the event of someone cancelling their appointment or a no show too.
At my local hospital there hadn't been a Cardiologist for over 14 months as they could not recruit after the previous one left so had I just kept waiting I would have been waiting a long time. I went private - cost £150 for consultation and about £800 for tests done on the day. Absolutely brilliant. I belong to Benenden Healthcare - cost £13.00 per month and they covered the cost of the consultation and tests with prior agreement andalso would have covered Cardioversion and possibly ablation if necessary at that time. However in the interim I moved house and got in with a good cardiologist and EP for cardioversions etc with NHS.
Request a copy of all tests done. Read on this Forum until you are squinty eyed. Keep a diary of events. Then, if resources allow, (say £250) book a prompt private appointment with a cardiologist.
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