I have Atrial flutter (AFL) caused by cardiac surgeries in early childhood and my late teens. My initial diagnosis was Pulmonary Atresia with Intact Ventricular Septum. I developed AFL when I was 28 years old (2014) but I have had recurrent episodes ever since. As a result I've had three cardioversions and four ablations. I am on warfarin and take Sotalol.
About three weeks ago I started to feel unwell. I was aware of my heartbeat and kept getting fluttering sensations in my chest. I've had ectopic atrial beats before as well as sinus tachycardia. Because my HR wasn't particularly high I assumed I was having a bad bout of ectopics. But unusually for me I felt very fatigued and started to struggle at work and when walking my dogs. The best way to describe it is it felt like I had the flu minus the temp/fever and runny nose. If I slightly exerted myself at work or at home I would have muscle cramps, aches and feel very lethargic. To the point where it became almost pointless trying to do anything.
I phoned the Adult Congenital Cardiac nurse for advice and was asked to get an ECG from the GP so the hospital could assess what was going on. I managed to get an ECG at a local minor injuries unit as this was quicker than waiting for an appointment at the GP - as I was told the wait would be at least two weeks. Following the ECG I was given an urgent appointment at the Bristol Heart Institute. My appointment was last Wednesday and I had an echo and ECG as part of my appointment. Both the sonographer and the cardiologist said it appeared that I was in AFL. The cardiologist took steps to admit me for an immediate ablation, but he was advised by the Electrophysiologist to allow me to go home wearing a holter monitor. I think they felt they wanted to monitor the flutter to see if it would be possible to ablate, given my past ablations had not been successful. My Sotalol was increased to 120 mg twice daily but this doesn't seem to have helped much. I was told if the increase in beta blocker didn't improve my symptoms to stay off work and rest until my holter monitor has been analysed and a treatment plan established. I work in a SEN school as a TA so the work can be quite physical and stressful at times.
I'm just wondering whether anyone else has had a similar experience to this? I only ask because normally when I have been in AFL I've always had a very fast HR (normally 150-170 BPM) and this is the point I take myself to A&E as I know it's likely to be flutter and I know I will be cardioverted. ATM my HR is flitting between 89-120 BPM so it isn't particularly fast. I'm still feeling unwell and easily tire. I've stayed off work as advised by the cardiologist but I do wonder why I wasn't offered cardioversion in the interim while I wait for ablation. As I would have been able to return to work if it successfully put me back in sinus rhythm.
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Blondie1985
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The thing is when you go to A&E the response from the medics that happen to be on duty is always different. GP's are the same. It's the luck of the draw really.
Don't hesitate to go back to A&E if you feel the need and don't be afraid to suggest a cardioversion while there. I've had a few of those too, but have always had to wait. Once at A&E they were going to do one for me without an anaesthetic! Well the thought of that soon put me back into sinus rhythm.
I've had three ablations and still have AF but now it's constant, which is nowhere near as bad as PAF. I've been told I can't have any more.
It's sounds as though you've been through a lot at a young age. Like you, I used to feel extremely tired and it was discovered I also had an underactve thyroid, have you had yours checked?
Make sure you don't eat anything that contains artificial additives, as they can promote arrhythmias.
Hope you soon feel better, please let us know how you get on.
Thanks for your reply. On this occasion I didn't actually go to A&E. I wasn't 100% sure it was flutter because I didn't get the fast HR I normally experience. Instead I spoke to my cardiac nurse who referred me for an urgent appointment in cardiology. I was not expecting them to say it was flutter but possibly ectopics or sinus tachycardia, so I was in no hurry to go to A&E.
As I'm under a congenital heart consultant and an EP I've been told about all the things I should avoid such as alcohol, caffeine and stress ect. I don't think they have ever mentioned artificial additives, but it would do me no harm to pay closer attention to my diet, so thanks for the advice.
I've never had my thyroid checked as the cardiologists are of the opinion the AFL is triggered by scarring to the heart, which was caused by multiple heart surgeries which I had in childhood.
I have A Flutter and take sotalol 180 mg, 100 metoprolol and 184 mg Diltiazem, all at the same time. I was put on this regiment about a year ago right after a cardioversion. I have been in sinus rhythm ever since.
In atrial flutter, I gather the heart rate cannot change smoothly but only in a uniquely step-wise fashion, with the pulse rate being a fixed ratio of the atrial flutter beat, which itself is usually around 300bpm, hence the pulse might be ~150, 120, 100, 75 bm, and so on. If you pulse is acting in this stepwise fashion, I'd guess the diagnosis is correct. So far as I know persistent flutter shows well on an ECG when atropine is used to separate it from other arrhythmias and shows clearly on an echocardiogram, so your diagnosis is likely correct.
Before my ablation last June, I suffered flu-like symptoms, too, along with extraordinarily debilitating fatigue. I understood that AF was easy to cure by ablation, so it's sad to read that you are still suffering but I'm guessing this is because of the other aspects of your heart. I was unable to take sotalol for some reason, but a combination of bisoprolol and digoxin proved effective at keeping my tachycardia at bay. An ablation was the only way out for me to stop the arrhythmia itself, however.
You sound as if you are in good hands, though, medically, so you can feel optimistic that a way will be found to help. Life can certainly be hard going when health issues have to be dealt with. You are doing a wonderful job with those unfortunate young people, I bet. I used to be a teacher and know well how tough dealing with some youngsters can be.
I am picking up that you have had four ablations, all for atrial flutter? There must be more to the story as atrial flutter in the right atrium has a success rate up to 94% . Flutter in the left atrium is more difficult to ablate. I have had atrial flutter in both the right and left atrium. For the left atrium the treatment for me, was ethanol infusion of the vein of Marshal. What I am saying is do ask what flutter ablation they did for the last four ablations, if you haven't already, and what sort of ablation are they considering for the fifth.
It sounds as if you have a good electrophysiologist because he wants to get the full diagnosis of your heart before establishing a treatment plan. Also, in terms of cardioversion there is both chemical and electrical, but you probably know that. As you are waiting for your results, you may want to make a list of questions to ask the EP. May all go well.
On my hospital letters it says recurrent atrial flutter. That is the only diagnosis I've had since I had my pulmonary valve replacement in 2005. I'm sure I was told the issue was in the right atrium as they believe the AFL is caused by scarring from multiple heart surgeries. But perhaps it is worth me clarifying if it definitely is the right atrium and not the left.
It was also my understanding that the success rate for ablation in the right atrium was reasonably high as well. I'm sure I have read that on BHF website. I did mention this to my cardiac nurse yesterday when she mentioned the possibility of a fifth ablation, but she said that most ablations for AFL are not successful first time 🤷 I will be sure to make a list of questions to ask my EP. My telephone consultation is on Oct 28th but the team who look after the congenital side of things are hoping to push that forwards. Thank you for your response!
Your key phrase is " AFL is caused by scarring from multiple heart surgeries." For me, that "scarring" throws the curve into your situation. So, you might want to clarify with your cardiac nurse if her position "that most ablations for AFL are not successful first time " is due to the scarring and not the general percentage for AFL ablation which for the right is about 94%. I have also read, that in a lot of patients , it is not unusual for an arrhythmia to result after heart procedure.
It is most rewarding to hear that your EP and your congenital team are collaborating to do what's best for you. You've gone through a lot. It is time for the pendulum to swing the other way.
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