Hi all, I got diagnosed with AF about a year ago now, I’ve been into A and E countless times ending up in the majors and resuscitation wards staying over night and it’s all been fairly scary I’ve had one cardio version and have been scheduled for two more both times I went back to have the ECG I was back in rhythm and then days later back out of rhythm and back at the start of the waiting list to have it re booked, my episodes seem to be getting more frequent now and I was only in A and E last week spending the night in the cardio ward, two days later it was back in normal rhythm, Thursday this week it went out again and is still out now, I don’t want to go back to A and E as I don’t feel it’s necessary taking up there time or a bed it’s just relentless at times constantly thudding in my chest I can hear it not only when I lie down but when I’m sat up, I basically am staying in my bed dread going downstairs and the most I have in me is a bathroom stop, I can’t work at the moment and I wonder how long my employer will take me being off sick.
Is this the normal for AF sufferers?
Regards Bob
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Bob_AF
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Hi Bob and welcome to the forum. You'll find us a welcoming group all willing to help where we can.
To allow me understand your position a little more, can you please tell me what your heart rate is going up to when you've been admitted to hospital and what your rate is now.
Your experience sounds very typical of a route we've all been along.
At its worst it managed over 200 that time I was injected with what I guess is the opposite of adrenaline but typically when it’s bad it’s normally 150-180 ball park I must say the amiodarone which I was subscribed helped and obviously the bisoprolol but recently it seems to have lost its effect current rate would be about 70-90 which is why I don’t think it’s major cause for alarm but it’s the fatigue.
Your current rate is in the normal range, much the same as mine. I have been in constant AF at 60-90bpm for 4 years and have had AF for 19. If your body became used to the rate you are in now, then you would be like me and able to do most things. It sounds as though it's not used to it yet and I must admit that I'm a little concerned that you feel you want to stay in bed.
If you get concerned, then do what I used to do and dial the 111NHS no. for advice. They would always send paramedics out to do an ECG. Once like you I had a really high rate and felt nauseous and sweaty, I had to struggle to stay conscious. When I felt able to I took my pulse and it was 60bpm. I was afraid and wondered if I'd had a heart attack, rang the 111 NHS no and they sent paramedics. Now here's a thing they felt the pulse in my wrist and got the same 60bpm result as me, but when the did an ECG my pulse was sky high. By the way my BP monitor showed the same 60bpm. It caused a great debate between them as they'd never seen that before. I was taken to A&E where a consultant told me he had seen that abnormality but it was rare. When the heart is beating really fast it's sometimes too fast to reach the wrist.
Do you know how to take your pulse in your neck, because that will give a more accurate result? My GP has told me to always do that and I also have a stethoscope. Just can't trust any machines now that measure from anywhere on my arms.
It will be your heart rate going up and down that will be making you feel odd. Do you know what your normal heart rate is when you feel well?
We would all rush to A&E when we first had high heart rates, but then learnt over the years to try sitting it out for a few hours.
Another thing I must tell you is that the mind plays a big part in how long AF can go on for. It's annoying to be told that at the start of your AF journey and when I was first told I made loud protests and said the person saying that didn't understand how bad AF can make someone feel.
So do everything you can to take your mind off of your AF. Lying in bed is not a good idea, but I guess you could lie there and read or listen to something on the radio.
I have a list of exercises I've collected over the years from this forum that can stop AF and will now go and copy them for you to try.
Constant AF for 4 years? Wow I did t know that could be a thing, at this minute in time I don’t know how your doing it going about everyday life? I struggle to get up and down the stairs! I don’t want to stay in bed but if I’m not resting I feel like I want to pass out. I will try these exercises and will let you know if any work, what worked for you and do you still practice any of them?
More information I've personally discovered over the years:
Having had AF for 19 years, three ablations (where they go up through your groin to burn or freeze the inside of the heart the rogue pulses often come from) and numerous cardioversions (electric shock to put the heart back into it's correct rhythm) my advice to everyone diagnosed with AF is the following:
1. Be Aware you are most unlikely to die from Atrial Fibrillation (AF). I used to think that the way my heart bounced around I would surely be found dead next day. Still here though!
2. Changing your diet to a more plant based one, avoiding any foods containing artificial additives, reducing your intake of red meat and having more chicken and fish, not allowing yourself to become dehydrated, cutting back on sugar, alcohol and caffeine, also losing weight (if it's needed) will all have a beneficial effect on your AF. Artificial sweeteners were a sure trigger for my attacks. How I wish I'd known all of this before having any of my ablations. Would I have listened if anyone had told me? Probably not, because I believed ablations would cure me - three didn't! They have helped some people though and my AF now is not so severe.
3. This is a hard one, but looking at gadgets that show your pulse and AF will make you anxious and anxiety feeds AF. I was obsessed with what my heart was doing for about the first ten+ years of my AF journey and my attacks were so debilitating I'd end up in a hospital ward, it has taken me a long time to take my mind off this subject and get on with living. The less I think about it, the better I feel. Now I used to feel cross with people who suggested I stop looking at my pulse rate machines, I thought that their AF couldn't be as bad as mine and they didn't understand how poorly attacks made some of us feel. I would get cross with anyone who said they could still go on holiday and carry on life as normal. They made me feel evil, by not understanding how ill I felt! In our minds AF is only as bad as we have experienced, for some attacks are mild for others they're more severe.
4. Make sure you don't slouch, or unwittingly do shallow breathing while watching tv or if you're online. If you do your heart will protest. Also avoid tight clothing around your waist or chest.
5. Try supplementing with magnesium, any type except oxide (I use glycinate from YourSupplements and also take taurine, zinc, vitamin B complex, D3, K2 & C). I feel fine and there's little I can't do now, despite being in constant low rate AF. Or at least I think I am, I don't check these days.
6. If over 60 I would make sure that you’re taking an anticoagulant to prevent blood clots forming and causing a stroke. Note that they do not thin the blood in any way, just stop it from clotting so quickly. You should not notice any major difference in the way you bleed.
These are all the tips I’ve saved over the years, given by forum members, for stopping AF. None have been written by me, all from other members here (names have been removed for privacy):
I am a therapist in private practice for over 20yrs.One of my therapies is yoga based. Having quite an accurate knowledge of anatomy, neurology and physiology also having PAF I have found this technique helps me immensely when my heart is fluttering like crazy. Make yourself comfortable either on a bed or lying on the floor, position a pillow under you head, Raise your left arm in an extension position as if you are doing the backward crawl. Stretch as much as you can and imagine that it is stretching your heart muscle...I bend my arm and position my hand under my head palm upwards.. Stay in that position for as long as you can or until the fluttering subsides...At the same time I think of something pleasant. It does not matter what you think about as long as it is a pleasant thought for you. This stops my heart jumping about almost instantly....I also place my right hand over my heart area...Don't panic and just keep calm thinking pleasant thoughts....I do hope this helps you. Kind Regards. C
As someone else who finds yoga breathing and some positions helpful, I would love to try (xxxx) suggestion, but lying down flat tends to make things worse for me. My most helpful position, taught me by a lovely yoga teacher, is based on a yoga forward bend. I sit up with my legs outstretched in front of me and a pillow under my knees, and then bend forward from the hips not the waist, with my arms relaxed but outstretched towards my ankles, and breath deeply and slowly. It's not so good on a full stomach and is more comfortable with your knees slightly apart, and I guess you have to be a bit flexible to find it comfortable, but it has proved to be a great help.
I agree with (xxxx) that staying calm and focusing on something pleasant is a must, and I've even fallen asleep like this as most of my episodes occur at night.
Finally, like AV nodal re-entry, some people have recurrent rapid rhythms that are infrequent and easy to self-control by using various methods to increase neural slowing to the AV node (so-called, "vagal manoeuvres"). Using these manoeuvres, one can sometimes stop the arrhythmia. These manoeuvres include:
Bearing down forcefully like you're having a bowel movement for 5-10 seconds, then slowly exhaling in the neck while lying down for approximately 5 seconds
Placing very cold (soaked in ICE water) cloth on the face abruptly.
Coughing forcefully
Rubbing the carotid artery (only one side at a time, never both) ------------------------------------------------------------------------------------------------
There's a yoga breathing exercise that has worked for me before. Lie on your back, bend your knees up so they are above your hips and your lower legs are at 90 degrees. Take a breath in for a count of 4 then breathe out for a count of at least 8. As you breathe out, bring your knees into your chest so you curl into a ball. When you think you've got all the air out of your lungs, try and breathe out more! Breathe in again for 4 and release your legs out to the starting position. Repeat several times. It helps to reset the diaphragm and focus should be on a good long out-breath.
So, after discovering that making myself sneeze stops Afib. I have discovered another novel way to stop an attack. It involves drinking a litre bottle of water while holding my nose. It's especially effective if I experience almost panic as I can't get a breath. I don't always finish the bottle but find that's not always necessary to gain the desired effect. Works especially well if I catch an attack early.
A quarter teaspoon of sea salt mixed with 10 ounces of warm water. drink that and then put a smaller amount on your hand and lick it off. Within a minute my afib stops.
This may sound like a "wind up" but believe me it works, for me anyway.
I found if I lay down on the floor and put my feet up against a wall, it seemed to stop my SVT after a few minutes, not sure why it worked, but it didn’t work for AFib though.
I actually have a printout of your suggestions from a previous post. It occurs to me to practice the yogic ones so that I know what I'm doing when I have a PAF episode.
Practicing deep slow breathing has definitely helped me to take it up when PAF starts.
Yes thank you for your kind and reassuring posts ..
Welcome to the forum, you will find lots of other members will be able to advise you about AF.
There is no known permanent cure for AF as it stands alone, it is important to understand how to manage your symptoms and what treatments are best available to you, please see a link below of one of our booklets 'AF and You' you may find helpful.
I had to reduce my Bisoprolol as I felt exhausted on it..I have heart failure and have had bouts of AF too which are quite frightening at times. Hope you're soon feeling back to a kind of normal 😊
Hi Bob and welcome to the forum. I have found the support and discussion on this forum and the AF Association website and helpline very helpful. It sounds like you’ve been suffering alone so hope you’ll stick around and find it useful.
I’ve had a blissful 8 or 9 months AFib free since an ablation last October. Cardioversions only ever worked a few days for me. We’re all really different here in how AF affects us mind and body. My AF was persistent so I’ve been lucky to have a good respite - fingers crossed for persistent NSR. But when in AF I was very symptomatic even within “normal’ and acceptable heart rate. And I didn’t have those crazy high rates that people with paroxysmal AF experience. I was just very weakened, easily breathless and entirely hated the feeling of my heart knocking around like a dementing frog and causing shifts in adrenaline that woke me at night, triggering mental anxiety. I hated the whole thing so much I paid to see a private EP (electrophysiologist) who also works in the NHS. Lots of folk on this forum have done the same and benefitted from the much longer appointments you get to ask questions and get heard. And I got on the right medications for me and on a waiting list for an ablation before I’d even decided if that’s what I wanted to do. I’ve also looked into other treatments such as mini maze and Woolf mini maze should my AF return and believe keeping myself informed and at the ready is a good line of defence.
First line of defence is following advice like Jeans in the first place. I know that when I step outside of a healthy diet or put on weight or get into bad sleep patterns or forget to do my daily meditation or ignore my EPs advice to walk at least half hour daily (with or without AF) then I’m putting myself at risk. Hope you find the right path for you through all this.
Hi and welcome. You are young to have this as often and as badly as you are doing. That's very bad luck. My problems began in my mid 60s.
Can I ask what medical aspects you suffered that brought you to feel the need to visit A&E? I went with my first AF episode as it was soon after an ablation for a different arrhythmia and it frightened me. Like yours, my pulse was 150-200bpm. When I was there, I was monitored and given 5mg bisoprolol and within an hour, I was well again and allowed home. The planned emergency cardio-version wasn't needed.
I was told that in a very few people with AF, their body systems cannot cope with the reduced heart output caused by their fast AF. Their blood pressure drops and this can put other organs at risk, especially the kidneys, and is treated as a medical emergency. This is an unusual response to AF, though, and likely happens in people with other medical issues running alongside, I think.
It's fear-inducing condition, I know that - and very hard going at times.
Hi Bob, I was 29 when I first had AF. It was intermittent for the first 5 or 6 years, then went persistent. I have always worked full time and also exercised during that time. I am saying this to reassure you that living life is possible. However when my heart rate goes over 140 I tolerate it less well. I have had the super high rates you mention and I completely understand its pretty hard to function.
So, they need to get those rates down which they will be aiming to do with the meds. And, I imagine, will be considering ablation, beyond cardioversion. I imagine the amiodarone was to support the cardioversion. Are they planning another? The cardioversion will then help an electrophysiologist know whether you are a candidate for an ablation. As well as getting you out of those fast rates. Which is a priority.
I wasn't offered cardioversion or ablation unfortunately when I was first diagnosed and meds didnt work out so I learnt to live with it. I did that pretty successfully for many years until it eventually caused other problems.
That might sound scary but actually the shift from intermittent to persistent is often easier to manage as you're not in an anticipatory state and don't have to deal with the transitions from one state to another. But it's not a great strategy long term (as I learnt) and the fact that you've been offered meds and cardioversion tells me your cardiologist is thinking beyond the "living with it" plan. You are young and they will (certainly should) be keen to support you to manage this.
For me, I am now in sinus rhythm 20 years later after a successful ablation. I've been in normal rhythm for just over a year. Even after all that time, it is possible. Which is extraordinary. There are plenty of people on this forum with stories of successful procedures. And stories of living well with AF.
Sounds as if it might be an idea to consult an EP privately if your GP hasn’t come up with anything. I found an extremely helpful guy who introduced me to getting a Kardia (and a smart phone so I could use it) and then prescribed Flecainide, to take when I had an episode which always stopped them in a few hours while I rested. I found him through the AFA who were very helpful.
Because my AF was caused by my thyroid , I suggest that you have all tests for thyroid TSH, T3 and T4.
Also a carodid arteries scan including thyroid.
There are heart side effects as you describe to do with problems with thyroid.
I have never had to go to A&E but basically I should have when Neta Blocker left with a heart beat Day of 185. 1 year 5 months later under a Heart Hospital Specialist who left me on Bisoprolol and H/Rate Day of 156. Still uncontrolled.
9 months later a Locum sent me privately to an acclaimed proven as interested in each case, who started me on CCB Calcium Channel Blocker Ditiazem. 180mg 1/2 dose took me down from 156 to 51.
Proven on a 24hr Heart Monitor . I had 3 x them in 2021.
Great truth to show what your meds are doing to your heart.
My normal H/Rate Night always 47avg bpm. Meds don't alter that but Metoprolol gave me pauses at night.
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