Hi there. I was diagnosed with AFL 15 months ago after a visit to A & E when I woke up one morning with palpitations heartbeat of 140 and feeling like I was going to pass out. I had previously been told by my GP that I had an irregular heart rate but after a 48 hr monitor was advised yes it was irregular but no treatment was required unless I had symptoms. That was about 2 years before incident. I was given medication which brought my heart rate. back to normal and prescribed Rivaroxaban and bisoprolol 2.5. An electrocardiogram a few months later showed no obvious problem with my heart. I felt terrible on the beta blockers, totally wiped me out and I reduced to 1.25. After 4 months the nurse said I could come off them and I was discharged from the clinic. My resting heart rate is 52 and has always been low even before all this. I have not had another episode since but am terrified if it should happen again. I have the pill in the pocket option should I need it. I’ve always assumed that I had paroxysmal AFL as it’s not happened again but my irregular heartbeat seems to be a permanent feature. The button always flashes for that on my blood pressure monitor. It’s irregular but always seems to be under 100 unless I’m on a very brisk walk. I have such anxiety now and constantly checking my Fitbit. Is it the case that unless I suffer further episodes I will carry on as I am?
Constant anxiety since Atrial flutte... - British Heart Fou...
Constant anxiety since Atrial flutter diagnosis
Having the pill in the pocket is a good thing and should give you some reassurance that if you experience another episode of Atrial Flutter, you have it in reach to use. I will say from my own experience I do suffer with irregular heart beats, but on an occasional basis. As a result, because they are considered harmless for the most part, especially ectopic beats, I am not treated for mine. If my heart rate was abnormal on a more consistent basis, then it is likely that I will be put on something to keep my heart rate stable.
I was initially worried after my heart attack last year and would constantly check my HR on my Apple Watch. Therefore, I do understand the anxiety surrounding this. However, as my cardiologists have told me, I am in no immediate danger and I can determine when I do, and do not need to seek out medical help. Now, I check my Apple Watch a lot less, maybe once or twice a week and that’s it.
If you try and remember the positives which is that your ECG was good and you have a tablet with you at all times should you need them, you will be okay. If in any serious doubt, you should contact your GP who may investigate further with a holter monitor and an echo to begin with.
All the best.
Tos
Thank you. Everyone tells me I am being obsessive. The GP told me that if you have an irregular heart rate a Fitbit isn’t that accurate anyway.
None of the at homes devices are 100% accurate so they should be used with caution, but they can be a good indicator if there is something potentially wrong which may require further investigation. My Apple Watch is constantly running in the background whether I’m checking my HR or not, and sometimes I show them to my cardiologist if he requests as it gives him an indication if everything is okay or if something needs to be looked into further.
Hi, I'm sorry to hear you're in 'limbo land'. It's not easy having an uncertain health problem that's being a tad stealthy and lurking. But firstly, I wondered whether you were in general terms a little anxious and your heart concerns have triggered the more intense anxiety you are now feeling? I say this because being self aware is a big part of managing your health. Managing anxiety is necessary because it impacts on your cardiovascular system etc.
The support for tackling anxiety is a different question with different perspectives.
I can describe what has happened to me. Some 8 years ago I changed GP practice and had a routine health screening check. A health assistant noticed a low heart rate with some irregularity. No symptoms, I was blissfully unaware. The GP referred me to cardiology where I had tests, treadmill etc and was 'diagnosed' as being sinus rhythm bradycardia with ectopic beats. Although overweight/obese, I was quite fit for my age, so discharged. The ectopics are described as part of the hearts 'back up system' sort of relay nerve nodes that help send the nerve wave quickly to the outer parts of the ventricles. My guess is so far your heart ECG readings show sinus rhythm. Told to get on with my life. I did spend and still do it occasionally feeling and counting my pulse, when resting. My HR drops to around 38-42 and I can miss 1 or 2 beats a minute.
Your cardiogram confirmed no 'obvious' defects which is good because some minor defects might be noticed that are acceptable and would have been explained.
You were prescribed anticoagulants. This was appropriate because you had an event (paroxysmal) and is a belt and braces strategy for reducing the likelihood of a stroke. This is very important and is a recent policy initiative.
18 months ago I had an out of the blue full on stroke. I was very lucky, a quick ambulance, competent ambulance medics, two stroke nurses on duty in the special stroke unit on A&E, quick scans and thrombolysed.
From a sombre briefing of all the risks and scenarios life returned over the next few hours, I was fortunate to be at the right end of the continuum of recovery outcomes. I had some minor right leg weakness, I still have some language issues (not speech, finding the wrong words!) .
Now here is where anxiety kicks in. It was a paroxysmal event, follow up tests could not determine a cause. Because I walked out of hospital there was zero follow up support.
I found HealthUnlocked the BHF pages, and read an article about exercise being an important part of recovery. Quite the opposite of worrying about ' overdoing it' as all my family were advising, the BHF pointed to a programme called Couch to 5k. Now I hated running all my life, I confess to scoffing quietly at joggers, and justifying my scoffs by thinking they'll have joint problems etc. But I did exercise and used to go for long bike rides into the sticks.
My own anxiety levels were such that I daren't go on my bike and have a stroke. It was bad enough being stationary and feeling my life draining away, freewheeling downhill on a bike and falling off!
So I asked my GP why I shouldn't do C25K and he said no reason not to but with caution if...
To start off I couldn't run the 1 minute intervals, same as experienced all my life, couldn't run to catch a bus. But I persevered because it was occupying my mind and I could sense that I needed to improve. Now C25K is brilliant, it really works and at the end of 9 weeks I could run for 30 minutes without stopping. I couldn't run 5k , but managed 3 which is about normal for a person my age and weight. Anxiety, gone, because I was doing something, I was taking responsibility for the things I could change to give myself a better chance in the future.
Now that was to come sooner rather than later. Medication, antiplatelet, required blood tests. And the GP noticed some abnormalities, may have suggested a liver problem. So more tests and scans. But unexpectedly and again asymptomless, I had some very worrying to the GP, gall stones. Recommended removal using key hole surgery. So in I go and wake up a lot later than I expected with an eight inch surgical wound, blooming big keyhole! The consultant said there were complications and it was a good job I was so fit!!! The C25K had done its job!
But throughout this I did have lurking doubts about the stroke and of course using this forum found a lot more to worry about!! The GP was supportive and suggested I purchase Kardia personal ECG device for around £100. Much better than a smartwatch, acceptable clinical output data. I had some printouts which looked to my eyes irregular but reading and understanding ECG traces is an exceptionally skilled task. But he was supportive of my efforts to improve fitness and because I accepted advice but had a healthy and informed interest, ie I was working with my GP and trusting them, he continued to lobby on my behalf. I had read that NICE guidance had changed , Holter ECGs are notoriously unreliable, and the fitting of an electronic ECG implant was being recommended where paroxysmal AFib is suspected. In my case a LINQ device. This records my ECG 24/7 and sends a daily report via a special phone modem type device to a computer somewhere ( Germany I believe)
This was fitted in February, about the size of an AA battery. And in May I had a call from the hospital asking what I was doing on the Tuesday morning previous as an AF event had been recorded!!!!
Immediately my medication was changed to anti coagulant Edoxaban. The consultant considered bisoprolol but decided not to because of my bradycardia. This to be reviewed. I was unaware of the AF event.
You are in the position you are already getting treatment to reduce the risk of stroke. I would willingly have accepted a diagnosis of AF and treatment to not have had the stroke. Thank goodness in the eight years since that health check things have moved on. It was a humble health assistant that raised the query.
Anxiety is wasted energy. You can turn it into purposeful self help. I'm still running and last Sunday did my first running event, completing 10 k. My self esteem has risen enormously, my sense of future has improved, I'm getting on with life.
Writing this has helped me. Thank you for asking your question. I hope my story may help you.
Good luck
Goodness, Thank you for sharing this. I find your story positive and inspirational. To be honest when my GP told me 2 years ago that I had an irregular heartbeat I immediately felt anxious and felt I was waiting for something terrible to happen! I had previously felt fit and well and totally unaware of any problem. I was terrified when I had the Atrial flutter and seriously felt that I was going to die. This sounds very dramatic I know. I know you’re right about taking control as it can be all consuming. I definitely feel better if I take exercise. I usually walk and over the last 5 days have managed 100000 steps. Good Luck with your health and hope your positive attitude continues.
Hi Sugarplumhemmings
I have exactly the same as you and I am constantly on my Fitbit with the same anxiety problems, I haven’t been diagnosed yet as I am waiting for my heart monitor, since I was told last week I am having one of those the anxiety went through the roof, really worried about what they are going to tell me.
Thanks Jan
I sympathise entirely. At least you are in the system and hopefully get a firm diagnosis soon. I’ve always been a worrier about my health so when I had the big Atrial flutter episode and had to go to A & E I think I went into super panic mode as well. I was there for hours and every time I thought it was easing a bit if a Doctor in a white coat approached me I felt like I was going to pass out! What are we like?! As recommended to me in another helpful reply try deep breathing exercises. It’s good to practice them when you’re feeling ok as when you’re in an anxiety attack everything goes out of the window. Good Luck
Thank you, the breathing exercises do work and I do practice them.
Best wishes Jan
Hi There. Thankyou for your great post. You are not alone on here, many of us on here suffering from some sort of anxiety. My advice is try and not wear your Fitbit every day, for checking your heart rate, it's there for your piece of mind, you know when you are experiencing palpitations. I have the same experience as you, I have some kind of Fitbit too and iam always checking my heart rate, before checking your heart rate you need to think first to yourself do I really need to check, do I feel ok with my self. You are checking because you feel anxious. Try taken a deep breath in hold your breath for a few seconds and blow though your mouth slowly, do this a few times and you might start to feel left anxious. When I first got told about my Arota Root dilation, I was crying every day sobbing, and I was always thinking about dieing and my palpitations was really bad.Iam not too bad at the moment, I still think about dieing which is a real pain in the neck. You will start eventually feel less anxious and just one day at a time to start to enjoy life. Take care.
Thank you for your reply. Yes I am trying the deep breathing . The Doctor did advise me only to check my Fitbit if I actually had any symptoms and felt unwell. I guess I just feel I’m on borrowed time until it happens again. I chose not to go abroad this Summer ( haven’t been since pandemic ) as I’m afraid of another terrifying episode far away from home.
Hi There. I went to Lanzarote in May for 10 days with my wife, my daughter and her husband, everything was great with my health for the first 7days and nights. On the 8th day I started to feel unwell and uneasy after going for a walk and after a meal late afternoon, I don't know weather my palpitations was back or not or my Anxiety playing up out of the blue again. I thought my blood pressure was high so iI stop drinking alcohol straight away, but I didn't drink that much anyway, no more than 2 pints aday while on holiday. Then on the morning we were all having our breakfast and all of a sudden I couldn't eat my breakfast anymore, my daughter got a taxi and took me to the local hospital and I got seen straight away, they took my ECG , blood pressure was 180/110, my heart rate 220 BPM. They could not understand why I was having such a bad time. I stayed in hospital for 5 hours before they let me go. The doctor there gave me a different type of blood pressure tablet and gave me 10mg of valium for the flight home back to Newcastle, I took half when I got onto the flight. I woke up and there was only 30 mins left of the flight. I took the other half when I got to our hotel. In the morning at our hotel we were having breakfast and I started having problems eating my breakfast again. I was glad to be back in England so I could see our doctors ASAP. I found out my palpitations were back so my doctor increased my propranolol to 40mg three times per day. At first everything was good but after 2 weeks started at to feel lightheaded and uneasy on my feet, found out the my blood pressure was going low. Iam back on 20mg three times a day of propranolol and my blood pressure is around 110/70 now.
I had both atrial Fibrillation ( an irregular heartbeat most commonly in fast rate, but mine was normal rate just all over the shop)Atrial Flutter is not irregular it is characterised by a fast rate but with a regular beat. Mine was up to 180 on occasions.
Atrial flutter has a 95 to 99 % success rate from a procedure called ablation. This is not open heart surgery,but a day procedure . The circular route for the errant signals is blocked ,in effect breaking the circuit. Thousands are done every year. I had mine done last year ,and no flutter episodes since and none expected.
Medication can be effective for AFib ,far less so for Flutter I'd question your consultant
Thank you for replying. I have read that the most effective way to treat Atrial flutter is ablation and I think I would welcome that. I suspect I would have to present in A & E a few times whilst having an attack.It’s only happened the once and after a few hours they gave me an intravenous drug which brought me back to sinus rhythm within 30 minutes. I guess I’m lucky in that respect.
Yes they used to do that with me. Good luck xxx
Hi,
I was originally diagnosed with atrial flutter in Feb 2020 following an episode of heartrate at 230bpm. It was controlled with Bisoprolol and anti-coagulants until August 2020 when I had another episode. I remained at 140bpm until October when I had an ablation which left me medication free apart from the anti-coagulant ( my choice).
I was okay until February 2023 and then had another episode - 230bpm. I am now back on 2.5 Bisoprolol twice daily.
I am 56 and have an underactive thyroid. I wear an Apple Watch which was very accurate during the episode and is a source of reassurance to me.
I worry a lot about the condition - it’s unpredictability, whether it will shorten my life expectancy (medics say not), fear of travelling abroad with it. That said, when you think of things you could be diagnosed with, I’ll take this one! Anxiety is a trigger for me, so I really try hard to live in the moment and actively try and stay calm. I don’t excercise enough, but feel scared in case I trigger an episode. The arrhythmia nurse said better to try and deal with the episode if it happens, but I haven’t managed it yet! I walk - aiming at 10,000 steps a day, don’t drink and have given up caffeine. The biggest comfort is hearing other experiences of people on here and not feeling alone if you have a wobble!
Wishing you all the best - updates welcomed.
Hi there. Thank you for your reply. We are similar but I guess I’m lucky only getting the one A&E episode. The problem for me is the fear of it happening again and it most likely will . I too have given up caffeine, alcohol and fear being too far away from home. Every time I take my blood pressure the irregular heartbeat sign comes up. I also have pulsatile tinnitus which ENT said was a blood flow problem. Waited over a year for a scan on the arteries in my neck which was fine but still have the problem so somethings wrong. In the last week or so I have felt a bit light headed and therefore not enjoying my regular walks. Have blood tests back in July which were all fine so don’t feel I can bother the Doctor again. I know I’m lucky compared to the heart problems of others but can’t seem to take this on board and get on and enjoy life. Best wishes to you.
I don’t think you would be wasting your doctors time, however there are excellent arrhythmia nurses available via the British Heart Foundation website, which you might find helpful to have a chat with.
I do think about the condition every day, but it is not all consuming in the way it affects me straight after an episode. I think it knocks your confidence and anything to do with your ticker is concerning as there isn’t a spare! So completely understandable to feel anxious. I wish I could say something more reassuring, however my experience to date is that alarming though it is , it should be viewed as an ongoing condition that is treatable and shouldn’t prevent you from living a regular life. Let’s hope a few more flutter/ SVT members come forward with some replies and personal experiences 😊
Hi I'm exactly the same.Constantly pulse checking.I had a flutter ablation in May 22 and although I do get the occasional funny beats including svt but still here so I guess it's just my lot.Very best wishes.
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