At my wits end now. Hoping to get a little reassurance from this amazing group of people. I had a catheter ablation on 16th May first one and have now developed atrial flutter. Which I understand can be common. I have had 2 cardioversions in the last 10 days which both lasted 24 and 48 hours. I'm back in persistent atrial flutter again and just don't know where to put myself. I am on 100mg flecainide twice a day. 5mg Apixaban twice a day and 7.5mg of nebivolol daily. I just can't cope anymore with this lack of sleep, lack of energy, draining, debilitating condition. How long can you be left in atrial flutter? My hearts pounding like a train at 140 beats a minute for days on end. No one seems too concerned when we get to A&E and tell me it's the electrics in my heart and not to worry. I've been advised I will need a flutter ablation in the next few months but can't have another one yet. Anyone have anything like this? Experience this before? Any suggestions? I don't drink alcohol or caffeine I eat low fat and low salt/sugar diet. I take short walks daily. I drink loads of water. Thank you all and sorry for the long post ❤️
Support please 🙏 : At my wits end now... - Atrial Fibrillati...
Support please 🙏
Hi Rachel
No one else apart from we who have abnormal heart rhythms (not even medics) can really understand the stress that atrial fibrillation or flutter can cause us. I guess you know that Flecainide can sometimes be the cause of abnormal heart rhythms?
I think it's uncaring that you have been left in flutter at that high rate of 140bpm. I can easily understand how dreadful you must be feeling. All I can suggest is that you go back to A&E and hope that different staff are on duty. Have you talked to your GP about your rate?
It's certainly not right in my eyes that you have been left to 'get on with it' at that high rate. I know that my hospital would have kept me in until it subsided.
Don't feel that you are on your own with this, we are with you and understand.
Jean
Hi Jean,
Thank you so much for your reply. That means so much to know I am not alone. It certainly feels that way alot.
I am now in the cardiology day unit at my local hospital. They have now really scared me to tell me that they are taking me off flecainide and putting me onto amiodarone. The EP has told me about the awful side effects and now I am at a loss of what to do.
I can't believe at the beginning of this year I was running 10KM 3 times a week and only had afib once in a blue moon. How this awful condition can take hold of you is so scary.
Thank you again for getting back to me. Hope you enjoy your day
I can understand why you have been asked to switch to Amiodarone as Flecainide can cause Flutter. Yes the listed side effects of Amiodarone are scary but it is the most effective drug & taken short term, is unlikely to cause too many problems. I hate taking meds but in your place I would give Amiodarone a chance until you can have an ablation for Flutter.
Your treatment options will be limited I’m afraid and I do empathise as I know just how dreadful Flutter makes you feel.
I was taken off flecainide as it did the same to me but they put me on Sotalol as my EP said Amiodarone has pretty rotten side effects
Hi Karendeena I have had so many people say the same. Its only now I look back at when my dose of flecainide was increased and this is when my big problems with my afib began. I only used to take it as a PIP. Thank you for letting me know all the very best to you
Hi Rachel,
I was put on Amiodarone after my ablation . I developed Afib but above all à very fast regular HR ( between 140 and 160 bpm).
I was on Amiodarone for about 6 weeks . It did the trick almost immediately but I stayed on it until I saw the cardiologist 6 weeks later. Nearly 2 years down the line and still in NSR. After tests by the drs and the Green light from them I would follow their advice to take it. Your heart needs help to heal and taking Amiodarone for a short time is generally safe.
Take care.
Hi Lily thank you so much for your message that's amazing to hear I am so happy for you. Amazing. I am now looking forward to tomorrow to start my journey with amiodarone. I've been given the green light and have spoken to my GP today too who has also reassured me. This group is amazing and has provided me with so much information, encouragement and support over the last 24 hours. Thank you again so much. Wishing you continued success and all the very best ❤️
Of course every case is different but Amiodarone worked for me. I hope it is successful for you. 🤞🍀
I was scared to take amiodarone at first because of the potential effects but I have been on it for three years now and it has been like a wonder drug for me. I don’t want to come off it! I am monitored every six months and have had no problems. I do have corneal deposits but the consultant ophthalmologist says they are of absolutely no consequence. I am on 100mg daily (reduced from the original 200mg daily) and other people on here have posted about research that shows the scary effects are very rarely seen at low doses. I can’t take flecainide - it made me much worse. I totally understand how you feel - I spent months feeling so dreadful that I had no quality of life at all. I felt much better within a short time of starting amiodarone and since then have been running around with my grandchildren feeling really well!
Hi Rachael,
I’m sorry you’re going through this at the moment, as as Jean said, nobody realises what it’s like to have a high HR like this, apart from us in this forum, which clearly shows by the way you’ve been treated.
Do you have arrhythmia nurses at your hospital where you had the ablation that you can call for further advice? If not can you ring the EP’s Secretary and ask for further advice from the EP. I wouldn’t suggest A&E again, unless you were in pain as they just don’t have the expertise and as you’ve experienced, they don’t understand.
Were you on this dose of nebivalol before the ablation, or has it been increased to this dose recently because of your now flutter? I’m not familiar with the doses of nebivalol, but it sounds like you definitely need to increase it, or try a different beta blocker to get the rate down further.
In the meantime, you could try your GP though they may be reluctant to change your dose, but worth trying if you can get a quick appointment?
Please let us know how you get on.
We are behind you.
Hi Teresa,
Thank you so much for your reply. That means so much to know I am not alone. It certainly feels that way alot.
I am now in the cardiology day unit at my local hospital. They have now really scared me to tell me that they are taking me off flecainide and putting me onto amiodarone. The EP has told me about the awful side effects and now I am at a loss of what to do.
I can't believe at the beginning of this year I was running 10KM 3 times a week and only had afib once in a blue moon. How this awful condition can take hold of you is so scary.
The nebivolol was introduced in April to help with anxiety and definitely helped with that. It also works really well with rge flecainide as a calcium channel blocker. The increased dose was last week after my atrial flutter was diagnosed.
Thank you again for getting back to me. Hope you enjoy your day
Hi Rachael,
I’m glad you’re in the right place at least. A lot of us here do know about amioderone as there are posts about it now and then. Perhaps, if you have time, do a search under posts and you will see people’s experiences with it, which are varied. I suppose they have had to tell you the risks with it, as their duty, but a lot of people don’t experience everything. You should be monitored with your blood regularly while you’re on it and I believe you don’t usually stay on it very long….some people say it was a wonder drug for them. No doubt though, it’s definitely the most potent one for Afib. I’m really sorry, you’re now in this position and yes, it does show how quickly things can change with this nasty affliction.
There is a less potent one called dronederone, that doesn’t come with as many side effects, but they must think you need the amioderone. I have read on posts that people do get a lot of relief from amioderone and it has made people go back to NSR. They would only be giving you this if they thought it would help you. It won’t be forever - keep reminding yourself that.
Are they going to put you on a list for a flutter ablation?
It's their job to inform you of the side-effects. My cardiologist just said " you're not going to like this but I'm putting you Amiodarone". I had never heard of it and trotted off to the chemist with the prescription. I later looked it up and might have hesitated to take it but sometimes a bit of ignorance is bliss and we just have to trust our cardiologist . Devil and deep blue sea. As long as you are monitored you will be fine. Just stay out of the sun 😄
Sorry what you're going through. I also took Flecainide to help prevent afib and aflutter, but was told by my ep to never take Flecainide during an aflutter episode, because it can potentially make it worse.
I would therefore double check with your ep that you actually are in atrial flutter (verus afib) and they want you to continue with the Flecainide.
Hope you feel better soon.
Jim
Thank you so much Jim I am now off flecainide after a visit to my cardiologist centre yesterday. I start amiodarone tomorrow for a short term whilst I wait for a flutter ablation. Thank you again. Wishing you success and all the very best to you Jim
I am sure the members here will welcome you and offer you their advice and shared experiences. If you have any questions, please contact the Patient Services Team at the AF Association: heartrhythmalliance.org/afa...
Kind regards
TracyAdmin
Thank you so much Tracy this group has been so helpful over the last 24 hours I am so truly grateful. Thank you for the information that's so appreciated
I am so sorry to read this, there's nothing worse than going through treatment traumas and still be no better off. I had only one ablation, not successful and refused further. I now have a pacemaker. One thing my cardiologist of 20 years told me, it is far easier to treat those in permanent A/F, admittedly using drugs, I wonder if that would be best for you. I can't give you any medical advice just to say that I send my best wishes and hope things start to work for you.
Thank you so much I really appreciate your message. Wishing you all the very best
You poor thing, and pleased to read they are changing medication. I was changed to Amiodarone, after 2 ablations, as it was the only drug that would work at the time and did the trick, the only issue I believe I experienced was small crystals in my eye so after 8 months changed to a similar drug but less toxic, Dronedarone ( expensive and never first choice ) .
Wishing you well
Thank you so so much. That's great to hear I am so happy for you. That gives me hope 🙏 take care and all the best to you. Thanks again
My sympathies - I developed atrial flutter (typical right atria) 9 days after my successful PVI cryoablation. Apart from the high HR I had no symptoms in AF, but with flutter I could barely walk alI was so breathless. I had a flutter ablation 1 month after the original ablation and was instantly well.
The flutter was blamed on the flecainide I was still taking post ablation. It is known that flec can promote arrhythmias. Interstingly I was left on the flecainide whilst waiting for the flutter ablation I believe to protect from AFIB returning during the blanking period. (I took diltiazem as rate control ). Note that a (typical) flutter ablation is simpler than an AFib ablation , has a much higher success rate and it rarely returns.Best wishes
Oh wow that's amazing to hear so pleased for you. That gives me hope too. I have managed to get an appointment with my EP next Weds. Really hope he can get me in for another ablation asap. Thank you again
Never lose hope!
Carbs and sugar affect how my heart behaves. This may sound random but if you can avoid carbs and sugar/fruit for 24 hours and see what happens, it just might help.
Thank you so much I am willing to try anything at the moment. My heart rate continues to rise and now at 153 bpm today. I have another 24 hours before I can start my new medication. Really hoping for some let up. Thank you again
Have you tried holding your breath? This can reset the heart. Maybe try 30 seconds to begin with. I would go and sit in the A & E car park, that used to relax me when I was scared, knowing there would be a medic on hand if needed 🤗
Thank you again for the advice that makes perfect sense and will absolutely be giving this a go. Yes I've done the same as you with sitting in the car park. It gives you a safe/comfort feeling. ❤️
Rachel,I hope your episodes of flutter settle down. I just wanted to say that the ablation fir flutter has an extremely high success rate (97%) so there is hope!I had flutter and AF,and hated the flutter as you have said its bike. No flutter since ablation.
Have they said why you can't have another ablation for months?
Have they given you an estimated time frame?
Sending a big hug x
Hello thanks so much for your message. Great to hear you have had success. That's amazing I am so happy for you. I have now got an appointment privately with my EP next Wednesday who carried out my ablation and am really hoping to get another ablation asap. I believe the wait is due to the NHS waiting time. If I can get in privately it would hopefully be alot quicker. It can't come soon enough. Today my rate is 153 bpm and has been at that all night. I start my new medication tomorrow so am hoping for some relief. Thank you again so much for your message 💓
Best wishes and hope you get ablation soon xx
Also,as others have said Amiadorone does come with possible hefty side effects but not every person has them it seems. My best friend was on it for 6 months prior to cardioversion,and none since xx
I was in flutter for 10months waiting for a hybrid mini maze, not as fast as yours mine was about 110 ish, and yes it’s no fun. Glad you’re in the right place now to get sorted. Amiodarone is a bit marmite, I took it after my procedure for 6 months, apart from the loading dose when I had a horrid metallic taste and a headache. It was ok it did make me very sun sensitive factor 50 all the way. After 6months it was stopped due to long QT but had done its job by then.
Hello thank you for your message and information. So happy to hear you are sorted. Sorry to hear you have had a difficult time too. Great news you are in a better place that's amazing. Wishing you continued success. All the best to you thank you again
Hi, don't know if this post will go through or not. But just curious, are your potassium, magnesium & B vitamin levels okay?
Hello thanks for your message I am on B12 supplements but other than that my magnesium and potassium levels are normal. They did full bloods for me yesterday which really helped. Thank you again for your message 💓
And your Vitamin D tested OK as well?
I would ring your cardiologist or email outlining your concerns, you probably wont get another procedure (Im guessing they can'can't do one too soon after the last one), but let them know how bad you feel and how fast your heart is beating (is that a resting pulse rate?) And request some form of rate control meds. Im on bisoprolol - its not nice re. Sleep disruption, weight gain, tiredness, etc. But it does control the rate down to about 100bpm. Not all people get the unpleasant side effects with bisoprolol.
Best of luck
Hello thank you for your message. I couldn't take bisoporal due to my asthma becoming worse so I have to take nebivolol 7.5mg a day. It hasn't touched my heart rate but has definitely helped with my ectopic beats. I am really hoping my new medication that I can start tomorrow will help short term whilst I wait for the ablation. I see my cardiologist/EP next week so am hoping to get a date in ASAP. All the very best to you and thank you again
I see you are a runner. Good on you. Do you have a stationary spinbike at home or a treadmill . This might seem rather aggressive to many but i remember working with fellow hear in NZ 40years ago who had recently had some sort of heart opp. One day shortly after coming back to work his heart started to race so he rushed back to hospital where they told him to run a several flights of stairs. After doing that they said ,do it again and after rest a short while his heart rate had come right back to where it should be. I have found this has worked for me as well with flutter. Of course it can be scary but its doing a reset that your heart always does naturaly when you are running. Truly all the best because i also know what what flutter is like. When i am in flutter i say to my GP, The rats back !!Colin
Hi,
I had the same experience the past summer. I was in AF and flutter at about 120-130 bpm and I was struggling to get up. I went to A&E but they just dismissed it. I was lucky because I had a private cardioversion already booked for the next day which worked for over 3 months.
Two of the three cardiologists I've seen, said that the flutter was probably brought by flecainide, nevertheless I was given it again after the ablation and as I protested they reduced the dose to 0.25 mg (my weight is about 50 kg).
Don't blame yourself, very often lifestyle doesn't have anything to do with it. Plenty of healthy people with healthy habits and heart conditions, like my case. I received when I first was diagnosed loads of unrequested lifestyle changes suggestions, and I was also looking for what I did wrong but more than one cardiologist told me that there is nothing I can do to help it besides keeping my usual. This is to move the attention away from lack of medical care which is what you need, not a better diet. And move the blame from lack of basic care (let's admit it, a cardioversion is a basic procedure) to the individual.
I'm really sorry to hear how you are feeling, can you access a private hospital? I remember someone saying that near Manchester there is an hospital (NHS) that does cardioversions in A&E, but I can't remember the name.
On the positive side, Flutter ablation is very successful. It will be sorted with the next ablation.
Would that be Wythenshawe?
I'm not sure, I must have put a note somewhere but I can't find it. They told me it is one of the best Cardiology in NHS.
Also Cleveland in London does it, that's what my cardiologist said when I told him I rushed abroad to have a cardioversion within the 48 h. Cleveland is private and as far as I know most private insurances don't cover emergency treatment 🫤
What an awful situation to find yourself in. I've been on and off Amiodarone for about 6 years and when having cardioversions, it's the only thing that's helped keep me in rhythm. ...... prior to last cardioversion in April, I had been in nsr for 2 years.Hope they get you sorted. Its really not acceptable for you to be left with such a high pulse rate.
So very sorry you are going through this. I can’t offer medical advice as I’m in a good place at the moment following an ablation 18 months ago, but I really feel for you. I hope you feel stronger having received the support and ideas from your AF friends here, and your EP offers the help you need.
Sending love and hugs,
Lyn x
Thank you so much Lyn I really appreciate your lovely message 💕 xx
Thank you so much Lyn I really appreciate your lovely message 💕 xx
They found atrial flutter during my ablation for afib so did both. I feel for you as it's awful. I know now why my heart used to go really fast during an afib attack. My ablation was at the end of March and I have had flutter again I think 🤔 Took caffeinated coffee on Sunday and that did it, couldn't sleep either. Not sure what the answer would be but I would contact my EPs secretary to book a private appointment
I’ve just seen the number of replies you’ve had and had to reply to. Feel free to ignore mine…
Well, sort of. I ended up with an ablation for atrial flutter in 2019. I was told it is worse than AF in its effects, which I hadn't had at the time (my AF started after the flutter ablation, and, yes, flutter is worse than AF in my experience, but I expect that is individual).
I can fully relate to how you feel. I was utterly debilitated and left fearing the worst. You will need an ablation for the flutter. I was told AFl responds poorly to drug therapy, although amiodarone might help. And yet... In my case - and do please ask about this - digoxin came to the rescue and did help a great deal. It got my pulse down to normal, allowing a less anxious existence until my ablation stopped the flutter and normality resumed fully (but not for very long...).
The reason this is treated more lightly by doctors as an "electrical problem" (meaning, in truth "an atrial electrical problem") is that the atrium is much less important than the ventricles, and they will still manage to do their job "well enough" during the atrial flutter to keep you (sort of) going. 140bpm is far too fast for comfort, but, again, people's response varies to this level of tachycardia. Your doctors will not leave you at this rate for too long as it can weaken the ventricles and valves, but not imminently at all (as I understand things). You needn't be worried about that - you will remain well, physically, however bad it feels.
I have atrial fibrillation now, maybe twice a month for hours at a time, but also probably daily for bursts of time, along with occasional bursts of atrial flutter, and LBBB but, worst of all, persistent ectopic beats that are at their worst in the evenings when the burden can be very high indeed. It is very hard going at times.
I wish you well. Do ask about the digoxin and an ablation.
Steve
I can't add anything more, but I hope you can get your rate down by whatever meab=ns and feel better soon. Good luck and best wishes.
Hi Rachael.
Sorry to hear what you are going through. The good news is the CV's worked which shows other treatments could work for you. Also, an ablation for flutter has a high success rate.
Your HR is higher than it should be. I wonder if asking about going on Bisoprolol would help with this?
Tell you what Rachael you WILL get through this - there's light at the end of the tunnel I promise you👍
Paul
I’m so sorry to read your post. I was in a similar position to you - not exactly the same.
My first ablation for AFib caused a new arrhythmia called atrial tachycardia- episodes lasted between a day and ten days.
They up my meds, but couldn’t do a cardioversion because I had two sinus beats.
Like you, it was horrible. Too scared to hardly move because my heart rate was over 128 just lying in bed and between 140-150 when doing small things around the house.
I hope it won’t be the same for you, but I had to put up with it until May 3rd when I had my second ablation. I’m felt fantastic ever since with a heart that I don’t even notice anymore. It’s really wonderful…
I would say that your team are not being understanding at all. How would they like to be running flat out for the last bus 24/7 day after day and how is anyone’s poor heart supposed to go on and on like that?
I would speak to a consultant at your hospital and see if he/she has any ideas and ask to have the ablation asap as it’s now vital.
My first one was 24th October (so my wait was seven months)
All the best. 🙏
Perhaps you need more fat and salt in your diet.
So many comments wanting to help you. I can add very little except to echo many of them.
Patience and lots of meditation practices to calm your nerves (along with a healthy dose of cannabis tea in my case). The anxiety is the worse part. Control that, and you’ll be fine.
I’ve been through it all: heart attack followed by Afib; every drug in the pharmacopoeia (including amiodarone), a half dozen ablations, a dozen cardioversions for Afib and flutter … and likely headed for the definitive pace&ablate. It will all work out.
Focus on relieving your anxiety. Yoga, TaiChi, and for me, my homegrown cannabis tea, helps. It’s a slog of a journey but you WILL be ok.
Hi Rachel,
I’ve just read all the replies. You—and I—are not alone!
I’ve been where you are. It’s awful, especially the 140bpm for weeks at a time when CV’s and drugs aren’t working and one is awaiting an ablation. Just awful.
In terms of side effects, amiodarone is one of the worst drugs I’ve ever taken, BUT it brought me back into NSR within 48 hours and kept me there. I took it for one month only, feeling pretty crummy from it the whole time. But I’ve stayed in rhythm since except for a few post-ablation blips that I understand are not uncommon. Mostly PAC couplets or runs.
You’ll get through this. That’s what all these wonderful replies are telling you. You’ll get through this. 🌹
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