What happens next?

[bugswhiskers]

I had an ablation two years ago, for AF and Flutter, but they're back again. I was taken off Flecainide after the ablation, but the arrhythmia nurses told me recently to take it as needed until I have a Holter monitor later this month. It doesn't seem to make any difference now when I take it, my pulse is still changing from irregular to regular and fast. I recently started walking with our local council health walks groups, and was really enjoying it, but now any effort brings on Flutter and AF. Has anyone had a similar experience and know if there is anything that can be done?

[jeanjeannie50]

I don't think any medication works for flutter (I've just listened to a talk by a cardiologist who said this), but an ablation for it is simpler than for AF and possibly would. Re your AF you need to talk to someone medical on what the next step is. What rate is your heart going up to and how are you feeling?

I used to find I could walk a fair distance in the mornings, but not afternoons, and certainly not after having a meal.

Jean

[Palpman in reply to jeanjeannie50]

I beg to differ. I suffered with at least 2 episodes of AFlutter per week for many years.Since starting Flecainide I have not had a single episode.

[jeanjeannie50 in reply to Palpman]

I just did a long reply to you and lost it. I was surprised when the cardiologist yesterday said no pills help with flutter. My heart was once stuck at a constant flutter beat of 150. I felt absolutely dreadful and could barely walk. Neighbour dropped me to docs, where I had an ECG, then was told to go home, and take another 100mg of Flec. This I did about 11am, but heart didn't return to sinus rhythm until about 3pm. Whether that was naturally or through taking Flec I really don't know.

Think I may give my old AF nurse a call and see what she says.

Jean

[Palpman in reply to jeanjeannie50]

I had difficulty adjusting to the Flecainide as it made me ill for days but I was told to stick it out. I did and I have posted here many times about how Flecainide helped me.I had AV Node Reentry Tachycardia type of AFlutter.

[Cookie24 in reply to jeanjeannie50]

Jean, can you send a link to the talk by the cardiologist?

[jeanjeannie50 in reply to Cookie24]

No, it was one that was live on Zoom yesterday, the notice of it happening had been put on here. I will put a notice below asking Flapjack.

Hidden , I don't suppose there's any chance the consultant in yesterday's talk was recorded?

Jean

[Hidden in reply to jeanjeannie50]

I’ll check with Rosemary but I’m pretty sure the answer will be no. Recording presentations is a legal minefield, particularly when there are images of the participants on display etc etc.

[Ppiman]

You have my sympathies; atrial flutter is a devil to deal with, and if yours is mixed with AF, all the worse, I guess. Poor you.

I had tachycardia from AFl (persistent 155bpm) in 2019 and it was very resistant to drugs and, well, it floored me. Anxiety was a large part of that, I imagine, looking back as I hadn't had further tests at the time and didn't really know what was happening. My cardiologist told me just what Jean said in her post, that AFl was the worst to have and the hardest to treat with drugs but the easiest and safest to cure by ablation. That proved to be the case, although I'm still dogged with milder tachycardia and some other arrhythmias, even with occasional AF. Such is life.

Have you tried digoxin? A kind soul here heard my plea and told me how useful this had been to him, so I asked my doctor about it and, lo and behold, success. I was able to reduce my bisoprolol dosage down to 2.5mg if i recall, and still keep a manageable rate.

By the way, if yours is atrial flutter, I was told you can tell by the stepwise shifting of the heart rate, AFl makes the rate jump between rates that are fixed ratios of ~300, so 150, 100, 75, 60, 50 and so on. Mine was 155 and then stuck at 105 until the digoxin. If you also have AF, however, that might alter that completely.

Steve

[DawnTX]

Hi there sadly I’ve been told there is no cure and this will happen. I’ve had two ablations 16 months after the other and it was my implant loop recorder that made the doctor aware I needed it ASAP. I just had surgery two weeks ago with a new procedure still not sure 100% what it was I will know more at follow up in a few weeks and fill you in. Meanwhile I am in full afib My primary has increased my metoprolol and I get some relief but nothing to write home about. For about two hours I can walk and breathe otherwise both are difficult. I can’t tell you anything other than we have to constantly be aware of our bodies and speak up. Special thoughts for you feel better

[bugswhiskers in reply to DawnTX]

I'm so sorry your Afib is so bad and really hope the new procedure will improve your situation.

[DawnTX in reply to DawnTX]

Thank you hon so far not much difference as long as I sit still I’m fine that’s not the life I want. I get about two hours of a break during the day where I can move about and feel decent. I am very sad right now but will wait to see what the doctor tells me when I see him. I see my primary Monday. He told me I could take more metropolol but I have found my insides do not appreciate that at all. I wish you the best. We had just moved it’s been three weeks same as my surgery. I am so impatient I have so many things I want to do and this just frustrates me. Having all of you here makes me feel better in some ways because I know I am not alone but I wish we were all talking about feeling wonderful not badly

[Cookie24]

My situation is somewhat similar. It looks like my aflutter is back two years seven months after ablation. I am currently wearing a Zio patch monitor. EP said the EKG looked like flutter and/or sinus tachycardia. I am already on the max dose of Propafenone and 240 mg Diltiazem ER. At least my heart rate is not too high and the palpitations are intermittent. The path forward is pending the results of the monitor.

[DawnTX in reply to Cookie24]

I have an implant Monitor loop recorder that is how they determine in the beginning what was going on. When I left the hospital my sinus rhythm and everything was wonderful. During the surgery I had both regular and flutter going on quite strong. Again I wonder if the meds in me were keeping everything good at the time and when they wore off they just showed their ugly faces again. Best of luck to all my a fib family out here. I’m sure just like me mentally you just want to go go go. I always say in my head I’m 35 unfortunately my body no longer feels that way as it did before a fib

[Bikerboy]

I was diagnosed with AF back in Jan 2014, discharged from hospital with regular beta blockers (bisoprolol). The condition was eventually stabilized. I felt cold all summer and after further tests went on flecanaide instead. I’ve been fine since, until November last year, when, on being admitted to hospital for an unrelated incident, without my meds, I went into irregular rhythm in 2 days! Medication resumed and all well now. This essentially means, if it’s working, don’t change it! Stopping Flecanaide, and then restarting it might have upset your tolerance. AF for me was prompted by pneumonia. Exacerbated by stress. After retiring, the stress disappeared and I’ve been fine since.

[DawnTX in reply to Bikerboy]

So good to see you’re doing well now you just made me think of something. My a fib has been horrible since I had Covid a couple of months ago. Previous to that I had mentioned earlier that moving from Florida to Texas I had packed my own car I had packed my condo etc. towards the end I was not feeling great but was under more stress than I can explain. Stress is not in my vocabulary now. I am in the most gorgeous place and feel relaxation such as I don’t remember the last time I had it except in the hospital with medication LOL. Three years ago my anxiety PTSD and depression hit with a vengeance and I was in the hospital for a week. Since then I have been surviving not living. Today I have been sitting outside for a couple of hours with my dog I cannot believe how light I feel mentally physically etc. I can say I truly feel happy.

Know if we can all figure out this darn a fib stuff so we can do what we want to do. Perhaps my Covid was a trigger point after all. When my PE/cardiologist learned

of it he. Immediately ordered a cardiac MRI to make sure it did not hit my heart especially the muscle. Perhaps it did not go that far but still was the trigger. He had wanted to do the procedure a month earlier than I had done. It was my timetable not his because I am trying to be kind to my cousin/Acting caregiver right now with whom I live. He doesn’t know this but I feel I have imposed so much and that weighs heavy on me. I cannot get myself to my doctor/hospital I am new here, it is two hours away and the highway is here are a nightmare even to people from Houston. I can’t ask him to take time off all the time either. I am going to work on this with my doctor when I see him to see if there’s an answer for in between where he can remain my doctor but may be have a pitch hitter so to speak. Most doctors seem to turn you over to their PN if that’s the case, the hospital has another closer that I may be able to drive to myself. Perhaps except for him doing procedures I can see someone at the closer hospital. We have to think of our family even though they would give us the world it doesn’t mean we want to take it from them all the time.

LOL the dog suggested we lay down for a little bit so we are. God bless all of you out here I never knew there was so much a fib. Here in the states they have just started having commercials called no time to wait. Before that I thought it was like angina which my Italian family called agita. They made it sound like indigestion or gas so they would drink a glass of wine to fix it lol. Hugs to everybody let’s hope for a good day today.

[JonathanPittsCrick]

It's not unusual to have a recurrence of atrial flutter or fibrillation following ablation and it can be treated successfully. Either the new arrhythmia can be mapped and another ablation carried out to stop it, or (if this doesn't work or the source cannot be itentfied) you could go for the "pace-and-ablate" option which will deal with any atrial arrhythmia permanently with no need for medication except anticoagulation. This involves implanting a pacemaker and, once this is stable and reliable (after about a month) undergo ablation of the AV-node (usually a very simple kind of ablation) to disconnect the atria electrically from the ventricles. You then have a regular heart rhythm controlled just by the pacemaker – this needs to be carefully adjusted to give the best response to exercise, for you individually, but otherwise all you have to do is change the pacemaker when the battery runs out (about 10 years).

[bugswhiskers in reply to JonathanPittsCrick]

Thanks for your reply, and for all the replies. I suppose I'm just a bit disappointed and thinking, suppose nothing can be done, but I know a lot of people are worse off than me.