I’m sorry to keep posting but anyone that has seen my previous posts will see I have only recently been told I have atrial flutter!! I was terrified but I have been starting to cope. The problem is since then I am constantly taking my pulse and have an app that tells me how fast it is going which I keep using. However yesterday I felt a bit funny in my chest while I was driving, I pulled over and my heart rate was only 54!!! Plus the rhythm looked really irratic but when I felt my pulse it felt quite regular just a bit slow and maybe not as strong. Now I’m terrified that I have even more going on or something more serious. I know I get ectopic beats as well but this is all getting s bit too much for me to cope with x
Can anyone help?!!: I’m sorry to keep... - Atrial Fibrillati...
Can anyone help?!!
Now Lotty....for a start disable your App and try to stop taking your pulse because both actions are making you more anxious instead of reassuring you..Ectopics can really make people very anxious indeed but are harmless. I have episodes when I have 12 or more a minute but I know what they are.
You have become very fixated on your heart beat which is understandable but is not doing you any good.
How about deciding not to check your heart rate for an hour or more to start with and gradually working up to longer periods ? I remember in the early days my fingers seemed permanently poised on my wrist and I tried to do this surreptitiously when the family realised what was going on ! I do understand how worried you are but try not to let your imagination run riot.
Sandra x
I just feel like crying all the time as when my daughter did it it looked normal but I dont know if my anxiety was making it erratic as when I took my pulse it didn’t feel chaotic and when I got up and moved around my heart rate did increase x
Don’t let numbers worry you. Take high quality magnesium—either magnesium glycinate or taurate, never oxide—, get enough sleep, have a couple of glasses of ginger tea everyday, take high quality coenzyme Q, zinc, krill fish oil and B vitamins. If possible, stay on a plant based diet and exercise. Avoid alcohol, coffeee and any other stimulants.
You will recover soon. I had the same problem. I feel fine.
Good luck
Lotty, you have fallen into the usual trap of becoming obsessed by your heart. This will make thing MUCH worse;
First thing to do is get rid of any devices and stop worrying. What is the worst which can happen? You were here before and you will be for a long time yet unless you let this thing take over your life.
If I were you I would see my GP and explain the anxiety which has taken over your life and try to get some counselling or similar treatment. We have all been there to some extent on another. I became obsessed by my BP machine and always tell people that I only started to feel better when the batteries went flat. There are many million people about the globe with arrhythmias and most manage to live a full life as you will given time. Right now you anxiety needs treatment far more than your arrhythmia.
Thank you I know I’m being a nightmare just having a real wobble today xx
Got the T shirt Lotty. When i was first diagnosed there was no AF Association. no forum and sweet FA out there about AF so trust me when I say I know what it feels like to be alone.
Same for me Bob . I felt family was getting fed up with me and my ' palpitations ' and as you say nowhere to turn to for advice.
We have all been here in the early days of our diagnosis. I don't tell anyone when I have palpitations. I cough out a few times to try to shock my heart back into rythym. And then I just ride out the storm. I remember I am taking warfarin so there are no clots to go astray. Learn to breathe properly. Maybe a few meditation classes would help.
Lotty - we’ve all been where you are - scared of what is happening to the only heart we have. Others have given good advice and although it doesn’t seem possible, you will find it easier to be calm.
The problem with a rhythm diagnosis is that it makes our heartbeat much more obvious to our brain which then worries at every little jump and bump. The trick is to ignore as much as you can, as best as you can. When I think my heart is playing around, I try to concentrate on something else.
Slow, deep breathing helps to calm things down - it also helps with anxiety which should also calm your ectopics. Horrible things but usually harmless.
Does anyone else ever have like a double beat? When taking your pulse it’s normal but will then do two fast beats together and then carry on normal? X
Yes - all sorts of things go on in my chest too. When I feel what you describe, I breathe deeply, expanding my lungs and that usually makes me feel better. Strangely enough, yawning makes me feel better when I’m having bumps and jumps.
Frequently Lotty !
I am a bit late joining in this conversation. The others who have replied have all given very sound advice.
Your symptoms are very indicative of Ectopics.
I know from many years of bitter experience that the fear is every bit as hard to cope with as the actual implications of AF in itself.
I get Ectopics every day and have had them for many years.
I am not very good at taking my own advice but one thing I do know is that after years of using a heart rate monitor I have found coping with Ectopics has been so much easier since I deleted the APP from my phone about a year ago.
Slow deep breathing is also a great help. Try your best to relax.
Pete
Lotty I know like many others anxiety is cruel Linked with out imagination we thing things and feel things far more Bob told me to stop taking my BP when I first came on here and if I didn't it would take over He was right In-between I was checking my pulse then worrying it was too fast or too slow Wast BP too high or too low It's a compulsive habit that our condition causes us .So now when I go to take it I do something else Speak to gp about anxiety I did and I took online therapy which he referred me to He understands and agrees about not taking any more tablets Never be sorry for asking about concerns
Hi Lotty. I have had AF for about 20 years so have had ample time to adjust and adapt. Like you i was extremely anxious and constantly checking my pulse and blood pressure and was convinced that any unusual sensations were the onset of a serious heart problem and unless i was able to get urgent medical help i was going to die.
Anxiety is a huge part of this condition in the early days, until we can convince ourselves that it is just that - anxiety.
By now i would assume that you have had a number of tests that have all concluded that, as in my case, your heart is fundamentally healthy, apart that is, from an electrical malfunction resulting in AF. In my case armed with that knowledge i was able to, at first pursuade myself, then eventually convince myself that i was not in danger of imminent death and 20 years on i, like most with AF, am still here.
It does take time and it can be frightening but each time you experience an ectopic beat or palpatations, feel breathless or lightheaded then recover to normal is an indication that these are just some of the annoying little intrusions that go with the condition. With this acceptance you have made a step forward to realising the you can and will have a relatively normal life.
Listen to the advice and comments on the site especially from the volunteers, it will help enormously and in a short while you will find yourself offering comfort to a new member who is terrified they have a far more serious condition than just AF.
Unfortunately I haven’t had many tests yet, I had a 24hr ecg but that was about 6 years ago!! When admitted to hospital they just did my bloods which were all fine so I suppose I won’t have everything else until my referral, the anxiety is crippling so I’m going to my doctors on Monday to see if I can have anything x
Morning Lotty, when starting with AF it's normal to feel like you do and want to keep checking your heart rate. I was exactly the same and now realise that I made my heart rate far worse with my anxiety. Anxiety feeds an abnormal rate and makes it worse that's a fact we all had to learn.
The rate you had of 54 is quite normal, I think doctors would want to see it below 40 before they would show any interest. The resting heart rate is the one we take, so you need to be sitting calmly for at least 10 mins without having eaten or had a drink. Make yourself loose and floppy and then take, be aware that it's normal for the heart rate to keep changing even when you are sat and relaxed. Now when you walk around your heart will naturally beat faster and depending on what you're doing can go up to something like 130. For instance after going up stairs it will be higher and certainly if you have been running or go to the gym. I remember thinking I would surely die the way my heart jumped around in my chest and wondered how long it would be before I was found. This was all fuelled by my stress and I now realise that my thoughts made it ten times worse. Being anxious will take your pulse higher as you will be in the flight or fight mode. You know that feeling you get when you perhaps think someone is in your house and you feel your heart start thumping. Well your anxiety can make it respond that way too.
We are all here for you, so now if you have any worries you can discuss it with us knowing that we understand exactly how you are feeling. A lot of members on this forum have had AF for a very long time. Myself for 13 years.
Big hug my friend, you'll be fine.
Jean
I think that’s what worried me as I was really anxious but my heart rate was staying low, however when I did get up out of the car it did go up into the 70s so it’s not like it was stuck at 54 it just felt a bit weird like it wasn’t a very strong pulse plus the app I use normally shows a normal rhythm and this time it was all over the place but when I felt my pulse in my wrist it felt quite regular but maybe my breathing was causing it I don’t know x
When driving I'm sure at times most people's heart rates will rise, it's such a stressful thing these days! At times we can also be unwittingly holding our breath which doesn't help. You know the expression to wait with baited breath. Well we AF people are good at doing that!! Say to yourself, I'm in charge of my body not AF, it can go take a hike! Really do your best to ignore it and you will feel so much better. I remember one lady on this site saying that when her AF started she would put her hand over her heart and talk soothingly telling it all was well and there was nothing to worry about. It would work for her and her heart would calm. Now that tells us a lot, doesn't it.
Jean
The question is, how did you feel in yourself? If you phone 999 with heart symptoms the first thing they ask is 'Is the patient breathing?' (They were a bit taken aback when I replied 'Yes I am!) Then they ask if you have pain, breathlessness, nausea or sweating. If you answer yes to any of those the ambulance arrives very speedily. If not you don't really need one! So you see 'funny feelings in your heart' are just that until they make you feel ill, that is when to take action.
I agree about the driving safety, being distracted by your heart is more dangerous than the actual arrhythmia! Also if you are using a phone app they are notoriously unreliable which is one reason why some GPs are sniffy about Kardia recordings because they don't know the difference.
When my heart started seriously playing up I was convinced I was going to die every time I had an ectopic but having nearly died a couple of times for other reasons I now know the difference. Hopefully when you have had some more tests you will feel a bit better and in time I am sure you will feel much better.
Hi Lotty
I’ve had p af for over 15 years and like bobd days there were no forums about then, I like you was constantly checking my pulse, my heart rate and everything else and it literally took over my life to the point me and the wife divorced in the end. Try to focus on other things stop checking pulse/heart rate so often, it’s hard at first but we all get there in the end, yes I still check my pulse/heart rate sometimes but I learnt to deal with so much better over time as hopefully you can too. Wishing you all the best.
Hi lotty.take it easy mate.it isscary at first but u wont die.youneed to get your head around it.the more i thought ofit at first the more i would panic.keep takeing meds try to relax.u become supersensetive over everything.stay positive and god bless.
Hi Lotty, I have read the posts and have to concur with members, please take on board what they are saying because you are going to actually make yourself ill rather than being ill. Millions of people suffer from the complaint we have and most of us will agree that it is exacerbated by stress and its bad enough the world being a stressful place without us all adding to our own stress by a feeling of doom, the worst thing you can do is to keep monitoring your pulse/heart rate because the actual act of doing that will cause stress and increase rate in the act itself. Please make an appointment to see a medic, possibly an arrhythmia nurse practitioner and talk it all out because you need help for your stress and to learn how to control it. Just to reassure you, I have had A/F for over 20 years and I am still here!
Hi Lotty321, like everyone else I can sympathise with you. I was eventually diagnosed with AF but my symptoms subsided for many months before they returned, but this time I had very occasional AF, but mainly ectopics. I did use a Kardia device (still do occasionally) which helped diagnose my condition. I did find I was using it a lot, watching my pulse and recognising the ectopics, but I tried to use this to relax and watch them decrease. I am a nurse so as already mentioned By other replies I knew that these were not going to kill me but I had a heart attack when I was 45 (now 60) so I did still get quite anxious, especially as my wife gets very concerned. It’s taken about six months of seeing my cardiologist (well his registrars or locum consultants who all have different ideas on how to treat the ectopics!) to get to where I am now. I have occasional flutters, but nothing like I had before, but I recognise them for what they are, ectopics, which I have learned to live with, or rather learned to not let them make me anxious. Having read other people’s experiences I count myself as being very fortunate in that my symptoms have been relatively mild, and they too have helped me to deal with the episodes. Perhaps when you get an episode, don’t take your pulse, it just makes you more anxious, just try and relax quietly for ten minutes, accept that it’s happening, slow your breathing and let it pass ( though I do realise they can sometimes last for many hours). Talk to your cardiologist and follow his/her advice. I think what helped with me was finding a drug which helped, but also accepting that this condition may be with me for many years, but not to worry about it, not let it rule my life. My wife is at present going through the menopause, to be honest I think I would rather have ectopics! Hang on in there and and gain confidence from the people on this great forum.
Hi Lotty
It is clear from your posts over he past week or so that you have developed a very unhealthy fixation on your heart rate and rhthym. You have been given a lot of good advice which I won’t repeat here, but you need to take it on-board. It now seems that this is even a distraction while driving. Are you safe to drive? You have to find some way to take your mind off this and get on with your life - I’m sure it will be affecting everyone around you. I don’t believe that taking a tranquilliser is an answer.
I hope that you pay attention to the excellent advice offered by all the good people on here - starting with ‘stop checking your pulse’ - and wish you all the best.
Lots of good advice here. After a while you will get to know what is normal for you. It is easy to get sucked in to various flips and flops of the heart. After a while you'll think, oh that happened last week and I'm still ok. " Just breathe" is so useful. Our breath is always there for us to focus on. I suspect at present your anxiety may trip you up if you try anything more than gentle attempts to slow your breathing but I find mindfulness very helpful. Accept where you are now rather than letting your thoughts run riot. Good plan to see GP
Best wishes Wendy b
Hi Lotty
I know it's hard to do but you need to stop taking your pulse and worrying about your heartrate and just get on with things. Thinking about it is the worst thing you can do. Everyone else who has posted says the same thing. I know it's a old saying but have you ever sat down and counted your blessings - all the things that are good in your life? Do this - then when the negative thoughts creep in you will have something positive to focus on instead right there at the front of your mind. I presume you have been prescribed some medication? If so and you are still experiencing problems go back to your consultant/GP and let them know. Good luck - and remember there are millions of us out there so you are not alone, My consultant once told me that around 10% of the population have abnormal heartbeats at some time and most are unaware that they are happening.
Ally x
Hi thank you, no medication yet as I’m waiting for my referral so don’t know what will happen then x
You will learn to live with it. Try a day without checking your pulse. Then another day. Constantly checking will drive you insane.
Hi Lotty, Sorry if I'm repeating information already given but there is a cardiologist in York, Dr Sanjay Gupta, who gives excellent online advice on all things AF and ectopic. Below is the link to one of his many You Tube videos. I recently had ectopics in the last 2 days of my holiday in Portugal, I think brought on by poor sleep and anxiety about flying home. I watched a few of his very reassuring videos and tried the breathing exercises, which did help in decreasing the frequency of the ectopics and also helped calm me down! Interestingly once I was in the taxi home from Gatwick the ectopics stopped! I have weaned myself off constant pulse checking (although I do carry my Kardia around with me, just in case) and I try now to get on with things I want to do. I go to tai chi, pilates and play tennis but on days when I feel I have little energy or feel 'off' I listen to my body, do less and take a nap! I was diagnosed with PAF 2 years ago, my heart was found to be healthy so I'm only on 'pill in the pocket' for the moment at least! Meditation apps are great to help with anxiety, just a few minutes a day to start with makes a difference.
youtube.com/watch?v=-i3b-ur...
If the link doesn't work just type in Dr Sanjay Gupta York Cardiology.
Hope things get better for you soon. D
Hmm
Sounds like I used to be, When A first got PAF 10 years ago thought I was going to snuff it, life stopped until an American Doctor pal said 'hey buddy your not going to snuff it manage it and don't think about it' Life improved dramatically, then came the dreaded Apple watch and App. Don't look at the heartbeat and ditch the cardiogram app. You will then be fine. Take the Bigbear view on life. When asked what is your greatest achievement in life, I say waking up each morning. And you will know when you have snuffed it !!!
Hello, Lotty 😀 20 years ago when symptoms first appeared I saw a cardiologist that said do this, don’t do that etc. After a month he asked how I was doing and when I told him he looked sad and apologized for creating in me the “cardiac cripple” mindset. I worried about EVERYTHING! It truly can become all consuming.
Enter a new cardiologist and he has convinced me AFib and flutter are not the “end of my life” but a part of life.
For my part I stopped with the constant monitoring and found new things to occupy my mind and time. When I start to get panicky I just relax myself and find some chore to do that distracts.
Due to my last ablation I am in NSR.
However, I said in my earlier post I get many Ectopics every day.
Today, for the first time in months I managed my first very brisk walk not all on the flat. The walk was about 5k.
Before the walk I had Ectopics.
After the walk I had Ectopics.
During the walk with my heart rate raised there were no Ectopics.
My guess is that with the raised heart rate the extra beats cannot find a way into my Rhythm.
Most of my AF episodes over the past 27 years have started when I was resting, watching programmes like Gardeners’ World, sleeping or just waking.
Food for thought for some, we are all different.
Pete
I’m new to this and I dint understand all the words what is an e topic and what is NSR? Thanks
Sorry to confuse you.
An Ectopic beat is either an extra or a missed beat that give you a feeling of palpitations in your chest and sometimes a feeling of acute nausea. They are normally benign.
NSR stands for Normal Sinus Rhythm - simply a normal heart beat that is unnoticeable.
Pete
Can ectopic beats feel like frogs in your chest but just for a second or two? X
Exactly
Frogs
Rabbits
Grasshoppers
AF is much worse as we all know
Elephants
A car firing on 3 cylinders
A herd of Wildebeest
All in all a horrible experience that non sufferers (including Doctors) cannot begin to understand.
Try to stay calm and do your best to relax, anxiety can only make AF and Ectopics’ worse to cope with.
Pete
At its worst mine feels like a really big fish, out of water, and thrashing around - dying. I hate it.
Do you mean your ectopic beats feel like that? X
Hi Lotty
no, I have permanent Atrial Fibrillation, and (as I said above) this is when it it at its worst. Fortunately now that I am being medicated it's all a lot less extreme. Most of the time it's 'dit, dit, dit, d............it ditty dit, ..........thump.'
Don't worry; I know it sounds glib to say that, but if you look at my user name you will realise that I have been like this for at least 24 years - my earlier posts go into more detail. the heart is one big muscle whose job it is is to BEAT; every part of it wants to go 'bong, ker bong, ker bong' all the time; but it gets a bit muddled and trips over its own feet occasionally; I particularly liked the post that said 'I put my hand over my heart and tell it everything is going to be ok, so calm down now' - as if it were a fretful child.
you will be OK.
Hi lotttpy I was diagnosed about 8 weeks back and I read your post and it could be me.....I checked my pulse all the time...it was my first thought as I woke up..and all day......yes I get double beats, I miss beats, and yes it all gets very frightening.....I think if you are between 50 and 60 pulse it’s good for your heart and probably the medication is slowing it mines around that when it’s not goung berserk. I’ve calmed down now and I think nit taking my pulse all the time has made me feel more normal and part of the world, because initially I felt my life was over I truly did, but it isn’t over....yes it’s changed and I overthink things a lot I know I do....I’m still rather paranoid about what’s happening as it’s so new to me....but definitely what everyone is saying is don’t keep checking your pulse and I don’t check it much now and it has made me feel as if I do have a life and nit just Afib....if that makes sense. I do feel for you as I’ve been very tearful too....but that stopped now and I’m sure it’s cos I dint think about it all the time.....this forum is new to me and I’m so glad I found it as everyone seems so kind and I had never heard of this till I was rushed into hospital in holiday....we aren’t alone lotty , I find it encouraging people seem to get on with their lives and I’m sure you and me will in time.....it’s just a huge shock to take in.....sue x
Thank you so much for your message it is very scary. I’m not on any medication yet as I’m waiting for my referral my appointment is not until September!! I called an ambulance and it was them that told be I had atrial flutter by the time I got to hospital it had gone back into normal rhythm on its own. Now because of my anxiety my ectopic beats have become more noticeable when I use to be quite relaxed about them x
That’s horrid you have to wait so long and no wonder you feel scared. Mine happened in Spain and was rushed into hospital , couldn’t speak Spanish....they put me in tablets and told me to go home, home is France but I’m English, I’ve seen a cardiologist and am on tablets.....you will feel much better when you see someone. I’d go see the doctor and it will help even to be told don’t worry will help....we all need back up with this as it’s so scary....it’s like entering a club and being a member if something you don’t want to be a member of......try not to take your pulse so much, I have relaxed more since I’ve stopped...and don’t sleep on your ear in bed listening to your heart either...I used to do that.....suex
Hi do you have atrial flutter? X
I have Afib. I think Afib and atrial flutter are both atrial tachycardia,
I have been described as both but my cardio says Afib.....paroxysmal which means it comes and goes...... Think Afib has irregular heartbeat and fast and flutter is fast heertbeat.....but I’m sure there are far better knowledgeable folk on this forum than me. I’m new to it all.....wish I wasn’t Lotty, oh to go back to normal life again.....mine was 130 in Spain and they brought it down by medication on a drip and it came down after about six hours.....I’ve had two other sessions of it being high irregular pulse, lasting ages, but since I’ve had my medication tweeted...it’s so much calmer and with it being calmer I’ve stopped taking my pulse all the time....I followed everyone’s advise and drink so much more water and I’ve heard so much about the importance if magnesium I eat a banana every day..... just copying what everyone else seems to say .
Sue x
Hi Lotty I had to wait 6 months to see someone (from November to May) to get a formal diagnosis and medication when I started having severe 12-15 hour episodes of P-AF every few days, my GP didn't consider it to be 'urgent' although I could barely speak or walk due to breathlessness. If you feel faint, are severely breathless or have chest pain there is always the option of calling an ambulance. I always coped on my own not wanting the added anxiety of a long wait in an A&E department.
I lived to tell the tale so try not to be anxious and you can help yourself by learning some relaxation techniques including slow steady breathing.
September isn't long to wait.
Has the suggestion that you have flutter been confirmed by anyone else? I feel so sorry for you Lotty because you are in such a spin over this. We have all had this horrid moment of discovery and the feeling that life has changed for ever and won't ever be the same. We do come to terms with it and survive and get to know sooner or later that actually a dodgy heart can be more robust than we sometimes think, even if it goes off the rails now and then.
Hi, no not yet but my heart rate was 150 for about two hours and they said atrial flutter/fibrillation then it went back to normal on its own x
That's much what happened to me about seven years ago. And indeed many of us.
It can lead us into looking after ourselves and living in healthier ways, so not too bad a thing!
Similar to me I woke up on holiday in Wales in 2016 with a weird feeling. I called 111 and they told me to get to a local hospital. My heart rate was 217bpm for 12 hours b4 it kicked back to normal. Scary stuff. They were gonna shock my heart but the drugs worked. I went thru a really rough patch at the beginning of this year with panic and anxiety and was constantly watching my heart rate. I've called down now but the doc is reducing my bisoprolol as I was going down to 48bpm and getting odd beats... but now I'm back to worrying cos heart rates gone up. Anxiety is bloody awful. Hugs x
You've had lots of great replies Lotty, but I'll add mine anyway. Yes it's terrifying when things aren't going smoothly with our hearts. I recently went into terror about going on a new anti-coagulant drug for which there's no antidote in the event of a serious bleed. But got over the fear, thanks to the help of the wonderful, caring people on this forum. I used to get bad ectopics - so much that there would not be more than 5 or 6 beats before there would be a string of out-of-rhythm ones that would go 'bang'! That could go on for hours, days or weeks! I lost so much sleep, and was constantly afraid and disturbed. But my doctor and cardiologist, after checking me out, said that ectopics are nothing to worry about. However it's a good idea to go see the specialists and make sure that it's only ectopics. Have you had them assess the readouts from your device?
OK Lotty, so you have a plan for September. In the meantime, there's always the emergency department at your local hospital if you feel that something is out of order. Especially if there's chest pain or tightness. Better to be safe than sorry. I've had a few 'blank runs' at the ED in the last couple of months, but it turned out to not be Atrial flutter or Afib. Something else was making my heart race, though the rhythm was solid and regular..... I suppose you already know about having your magnesium, calcium and potassium blood levels checked to make sure they are in balance? Magnesium supplementation helped my ectopics years ago....