I have a congenital heart defect which resulted in me needing five open heart surgeries in childhood. When I was 28 (in 2014) I had my first episode of sustained atrial flutter, which my EP believed was caused by scarring to the atrium following my surgeries. I've had four cardioversions and four ablations since 2014 as I've gone back into atrial flutter several times since.
For the last six weeks I have been experiencing issues with my HR again. It does not feel like flutter but it has been very bothersome. The best way to describe it is it feels like my HR is constantly flitting from sinus to an abnormal rhythm. Every few minutes I feel it flutter out and then in, out and then in. I have a Fitbit and that shows my HR has rested in the high 90s for the past five weeks, but will peak to 180bpm at points throughout the day. Normally with medication my HR rests in the 60s.
Anyway I alerted my cardiac nurse to the issue within three weeks and she arranged for me to have an ECG. I was told it was likely ectopics and it would settle. But following the ECG I was given an urgent appointment with a cardiologist from the congenital heart team. I had an ECG, echocardiogram and 24hour heart monitor placed on me during this appointment. The sonographer said the echo suggested I was back in atrial flutter and the cardiologist said this was the most likely cause of my arrythmia. I was advised to stay off work until they got the results of the holter monitor. I wasn't convinced because normally when I'm in flutter my heart pounds and seems to almost get stuck at a high rate. I also wasn't offered cardioversion which seemed odd as I've always been cardioverted before.
Yesterday my cardiac nurse phoned and said the results were back. It looks like I have atrial tachycardia and not atrial flutter on this occasion. However, she confirmed my suspicions that the arrythmia is not sustained and it's constantly flitting. Annoyingly though this means I can't have a cardioversion. I am now awaiting an appointment with my EP on the 28th October. I've been told not to return to work until I've spoken to the EP. I work full-time in a SEN school so it's quite a physical job and involves me looking after vulnerable children. Fair enough, but frustrating as I like to keep busy.
Following my appointment with the cardiologist my Sotalol was increased from 160mg per day to 240mg. This has so far (after two weeks) been ineffective. I am on Warfarin and due an INR test on Tues. Apart from being aware of the constant flitting I have felt unwell since this all started. I can only describe it as feeling like I have the flu but with no temp, chills, cough or runny nose. I am permanently exhausted and any exertion causes me to experience muscle pain, heavy arms and aching legs. I'm also getting light-headed if I move too quickly and brain fog. Some days are worse than others.
Has anyone experienced this type of flitting before? I realise arrythmias can be paroxysmal but the flitting in and out feels like it's happening every few minutes. I'm not getting daily or weekly episodes but episodes of atrial tachycardia constantly throughout the day. It's completely exhausting and bothersome because I am aware of it every time it flits. Even before I was signed off work I was aware of it doing it, but I'll admit having no distractions probably isn't helping. This is a very new experience for me as normally with atrial flutter it's like BOOM straight in and stuck at 150bpm. I have to say this feels worse, even though I've been told it's good because the arrythmia is not fully taking hold.
Thanks for reading!
Anne
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Blondie1985
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I have had Paroxysmal Atrial Tachycardia for a few years now and the high rate is typically around 140/145. I had an ablation for it on August 2019 during which my EP found four active sites but I still have some kind of arrhythmia. Resting completely my HR can be mid 60s with occasional blips to 100ish but any kind of exercise and my rate runs mid 90s and stays there until I rest for a couple of hours. I have a virtual appointment with my EP on Monday morning so may be able to tell you more after that.
The jumpy HR sounds similar to what I am experiencing. My HR does drop below 100bpm but only when I sleep or if I'm at complete rest for a significant period of time. The nurse said the highest rate picked up on the 24 hr monitor was 178bpm, but I did nothing more strenous than walk that day. I'm hoping if the EP decides it's worth ablating I will be given a medication change to improve some of my symptoms. So that I am at least able to return to work before the ablation, if only part-time. The wait for ablation at my local heart centre is normally 6 months to a year. Unless it's deemed an emergency, which I suspect this won't be. I've only ever been prescribed Bisoprolol, and then when I started experiencing ectopics they changed to Sotalol. I have had some side effects from both but I can cope with them better than the arrythmias.
Sounds awful. Every so often I get runs of tachycardia. I can be sitting quietly and then for no apparent reason my heart suddenly decides to rev up. It feels like someone is sitting with their foot on the accelerator - the press it down, the heart rate goes up, they take their foot off and it goes back to normal, then they press the accelerator again 🙃. I’ve been diagnosed with SVT, Multifocal Atrial Tachycardia, Atrial Flutter and Atrial Fibrillation (and frequent PACs) so sometimes when my heart goes funny it’s hard to know what it’s is. I’ve had a cardio version and 4 ablations. My heart has been pretty good since the last ablation but I have remained on a low dose of beta blockers.
In the past I've experienced my heart rate constantly going up high, then back down to sinus rhythm and I agree with you it certainly does wear you out! My episodes didn't last as long as yours though - I really feel for you. There may still be treatment options for you though, a pacemaker for one.
Some people thrive on Sotalol, but I was one of the ones that didn't. It made me feel totally spaced out, Digoxin did the same. Poor you being on Sotalol and having your heart flitting around as well, no wonder you're not fit to go to work.
Flecainide is my wonder drug. I've also had 3 ablations and lots of cardioversions. I'm in constant low rate AF now, but can lead a fairly normal life.
Are you aware of how our diet can affect heart rhythm. I avoid all food and drink containing artificial additives. I'm convinced (know really) artificial sweeteners were the trigger for my AF.
Yes i had similar experience from December last year to February this year , interspersed with AF for good measure. Very frustrating to put it mildly with rates going up to over 240 bpm.
I did manage to get an 'emergency dccv during one of the 'on' (!) times in February thanks to the lovely A&E consultant and cardiologist at my local hospital . That seemed to reset it all. I have occassional A/tach now but am listed for a 4th ablation which I intend to accept, after declining offer earlier last year. After having 20 DCCV s I don't want to push my luck with many more.....
P.S. like you this flitting in and out was new to me. I used to go straight into a fast rate and stay there .
Thank you for your reply! Yes I am feeling very frustrated at the moment. I think I would prefer the arrythmia to be consistent rather than intermittent, as the constant flitting is very draining. Fortunately I haven't needed to go to A&E this time. Shortly after this all started I spoke to one of the adult congenital heart nurses in Bristol for advice. She very kindly got me an urgent appointment at the Bristol Heart Insitute so I'm being dealt with as an outpatient at the moment. Since I've been signed off work and resting my heart rate doesn't appear to have gone above 130ish. If it did go as high as 240bpm I would definitely be going to A&E and pleading for a cardioversion. If the EP advises another ablation it will be my fifth. I've been cardioverted three times before, I hope I never reach twenty!
Yes currently and since August similar sensation. Bpm has always been between 60-80 now 90-111 average . As you say perfect description..flits off briefly every few minutes but not into full blown attack.
I am to have a double ablation done by Proff Osman himself but wait list is 12 months...
He says as does yours that the meds ( bisoprolol flecanide ) are doing their job and firewatching the Arrthymias..but it's a bit disconcerting.It seems to be less obvious to me over the lady week or so..so maybe I either got used to it or it's calming down
I also have great fatigue and achy legs..fun isn't it lol!!
At least we are on the right side of the grass still!
Please let us know how you get on and I hope it gets sorted out for you too.
Yes, the cardiac nurse said the fact the runs of atrial tachycardia are intermittent are a good sign. To an extent it means the Sotalol is working. But I do find the flitting quite bothersome. Every five minutes or so I think to myself "Oh here we go again". As much as I wouldn't want anyone else to experience this feeling it is reassuring to hear I'm not the only one. So thank you for your response.
It does help to know we are not alone ! I have a bicuspid aortic valve ( two flaps instead of normal 3 ) which I am told can also cause shortness of breath .
I have had two ablations. The second being successful for maybe two years,then suddenly while resting watching television without any warning 140 bpm tachycardia. Ended up in A & E where They tried chemically converting which failed followed by metoprolol. Which slowly brought my H/R down. This seems to be happening on a monthly basis for the last 4 months. I take a pip 100mg Metoprolol and that works generally after 45 minutes. It then just turns off. Had an episode last Friday which lasted for a couple of hours before returning to my normal resting rate of 47-52 bpm. EP has said he can rectify this with third ablation if it becomes a nuisance. This is my first post to this group but have regularly read the posts over the four years of AF, it has been a great help in calming my anxiety and supplying some well needed advice
Just to update those that replied. I had my telephone consultation with the EP on Weds. It was not my usual EP but he seemed nice enough. He was very sympathetic and showed concern for my symptoms. He said he was advising I change my medication from Soltalol to Amiodarone with the view to me being placed on the waiting list for a pacemaker. He said the atrial tachycardia appeared to be coming from multiple sites and he wasn't sure if another ablation would be successful. Given I have had four previously for AFL he felt the time might have come to fit me with a pacemaker. He said that would be his recommendation but if I was happy he would discuss it further with his colleagues and get back to me.
Anyway he phoned back today and said he'd spoken to my usual EP and was advised by her not to change my medication to Amiodarone. She felt the potential side effects were too risky for me. Although she realises the Soltalol is doing very little for me, she told him she would prefer me to stay on that particular drug rather than change and risk something happening as a result. She also told him she wanted to try an EP study with the view to ablate before considering a pacemaker. I'm going to be put on the urgent list but it's expected I will have to wait for 3-6 months. He said he's going to make some recommendations to my GP re: returning work as they don't want me to overdo it.
Thanks for everyone's responses to my initial question.
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Anyone else first have AFib, now AFlutter?
I'm contemplating if I should have an ablation done or not. I'm needing some advice. 
Treatment for Atrial Flutter
So now I'm a bit scared.
