Long story short:third ablation failed in May. In between ablations (last 2 years) my afib has been permanent.
Ive tried multiple drug combos but the only thing that makes my heart beat normally is an ablation.
After latest failed I had a week’s reset after a public hospital cardioversion. Then I was back in afib. A week later the metoprolol i was given seemed to keep my heart rate mid 90s even though rhythm was out. I decided to live with that but my specialist said change to sotalol and stop fleccainide for when you do have another cardioversion or 4th ablation.
After one day of new drug regime HR climbed back to 130 and its been there for 3 weeks without a shift. This second cardioversion i had today was rostered. Im back to 67 in rhythm But i know it wont take.
My final chance at an ablation working is coming up——— before eventual pace and ablate.
Yes im 63 and too young it feels for pace and ablate but i cant live life at 130 and if 4th ablation doesnt hold…. well….
anyway
my question
my HR seems to always land on 130 when ablations fail… Is it usual to kind of have a default Afib HR?
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swimminglove
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I guess you know that after having a cardioversion, you have to take life easy for a few weeks and let your heart muscle grow strong beating in it's correct rhythm? No strenuous exercise whatsoever for a while as it's so easy for the beat to flip back into constant AF in the weeks after the procedure. I once walked up a steep hill the day after a cardioversion and immediately went back into constant AF.
Also have you tried cutting out all artificial additives in your food and drink (Sulphite, a preservative in alcohol is also a known trigger) and for me artificial sweeteners are a sure one? Doing that has helped me greatly. I only wish I'd known that would help so much, before having any of my three ablations and numerous cardioversions.
I find it astonishing that all trained medical staff rarely mention diet as being a cause for heart arrhythmias. I've had AF for 19 years and have learnt this about additives in food the hard way.
How are you feeling with your heart rate at 130? If it's constantly at that rate then it sounds like you my be in flutter?
I knew about alcohol. I gave it up two years ago and havent had even a sip since. I think you or someone else might have mentioned artificial sweeteners and I have used them for decades in my coffee. But they are now off the list as well. In terms of exercise I didnt really know this. I will be extra careful in the next few weeks (IF it sticks🙄). And hopefully the sotalol will help as well.
Also I received a suggestion here a few weeks ago about the new ablation technique. When I saw the specialist before this cardioversion today and told him about this new great technique—— turns out he was the first to do it in Australia and all three of my ablations have been pulsed field ablations 😳😳😳
The ablation method a lot of people are singing the praises of is the Wolf Mini Maze performed by Dr Randolph Wolf in Houston Texas, Dr Ohtsuka in Japan and Mr Hunter in Sheffield UK does a similar procedure.
You are so right! Not one provider in the EP division has ever breathed a word to me about food, exercise, and triggers. Like you, I had to find out the hard way—by putting two and two together after the fact. I, too, find it astonishing. And, I will add, professionally irresponsible. In my experience, at least, the post-ablation discharge handouts as well as follow-up appointments make it appear that one’s life is simply expected to return to normal after about a week. What a bunch of bull, as becomes clear from reading true-life afib experiences on this forum. Ablation recovery can be slow and complicated.
I just found out after my second ablation that atrial tachycardia can be a result of, a “side effect” if you will, of an ablation. I had a brief and mild AT episode 2 months after my 2nd ablation, brought on by a large meal followed by too vigorous physical exertion—which I only figured out after the fact, by myself, with no input or wisdom from my providers, but plenty of wisdom from this forum. The mild AT was easily converted, and months later, I’m still in NSR.
My issues: I should have been apprised that AT is nothing much to worry about post-ablation. A CV cleared it up; a post-ablation touch-up is what that was. Not uncommon, I found out—but only from researching and asking direct questions. Not knowing that when the AT hit, I had a difficult emotional time, fearing everything was a failure, when it was only a common blip during the healing process. C’mon, providers. Give me information! Don’t make me dig and stew.
My other issue: Nobody in EP bothered to talk to me about the possible trigger. I’m the one who had to figure it out and bring it up with them, seeking validation for my hypothesis. Which I finally got.
How hard would it be, among other things we discuss on this forum regarding post-ablation experiences, for EP to put on their instruction sheet: “Avoid large meals followed by vigorous exertion as this can kickstart an arrhythmia.” It’s a common and well-known trigger. So are artificial sweeteners and additives. Alcohol in any amount (vs. the implication one can just go back to one’s normal drinking patterns as one supposedly quickly returns to normal life. Warn us, EP people! Be upfront and honest with us, as upfront and honest as people on this forum who tell it like it is. We are new at this in the beginning. We need guidance and hard core information.
the ecg (both 3 weeks ago and this morning said atrial flutter (sorry for the afib ref. ❤️ I know they’re not the same… sometimes easier just to write afib). the ablation was done last november and it ‘failed’ a month ago.
I developed Tachycardia after my penultimate ablation. My EP said Tachycardia was easier to remedy with ablation. I went on to have one more ablation and since then I have been improving so much so that I have now been 2 ½ years AF free.
Thanks Bob. I hope I have a long way to go! As far as assuming all is well until the grim reaper arrives, I can assure you I am not in slightest bit complacent.
However, I now try to live for each day.
Back when I had PAF I had such a fear of each episode and also fear of it never ending when I had AF that I was a nervous wreck and found dealing with it so so difficult. The decades of uncertainty is engraved on my brain.
However long I have now I think that my EP has made my QOL so much better and am enjoying each day and so grateful.
Remember however I now have Bradycardia and my EP wants me to have a pacemaker which I am resisting because of my allergies. I can deal with it for the forseeable future
I had my PM in 2022 after years of objections. EP told me he would sleep better if I accepted his advice so I finally agreed. Now even though my HR is generally mid70s there can be several days at a time when it is 60 which means it is pm controlled so he was right!
His words 'I will have a very low threashold for agreeing to do it' also saying that it might be a bit urgent if I don't but to be honest I am still resisting as the urticaria I had between 2013-2017 was at times so bad that I feared for my sanity and I never thought I would say it but it was worse than my AF to bear.
I had bad thoughts lets just say that, all caused by my allergic reaction to the cardioversion pads and the ecg stickers that they place all over you during an ablation.
Over a period of nearly 10 years I had 1 ablation for Atrial Flutter followed by 5 for atrial fibrillation. Following the 6th ablation I was stuck in Atrial Tachycardia and my EP arranged for one more ablation. He said that ablations for Tachycardia are easier than for AF abeit I was in the Cath Lab from 08:00 until 17:00 that day. Gradually my incidents of AF became less frequent and I had my last episode 2 ½ years ago. After that the episodes of Ectopic beats became less frequent and now they are rare.
Excuse me, can you explain your ablations to me. The first one was for AF and the second for tachycardia? Did you get tachycardia as a result of the first ablation? And what kind of tachycardia did you have? best regards
The first one in 2009 was for Atrial Flutter because I had moved home and was being seen in a new hospital. At the previous hospital they had diagnosed atrial fibrillation but the new hospital decided to start with a flutter ablation as that was shown to be flutter on the ECGs I had. Ironically I went into atrial fibrillation during the ablation. 😂
Consequently I was back within a year for an AF ablation.
Unfortunately I continued to have Paroxysmal AF. (PAF)
4 more ablations followed as they continued to try and stop all the reconnections.
A few months after my 6th ablation unfortunately I developed Atrial Tachycardia. My heart continued to beat at >120bpm and my EP arranged for an ablation. He said in his experience ablation for Atrial Tachycardia was easier to achieve results.
Three months later I had my 7th ablation that was in August 2017.
Unlike previous post ablation periods my PAF became less and less frequent albeit I continued to have a lot of ectopics.
As the years have passed since my heart rhythm slowly but surely improved.
Long story but I have now been AF free for the last 2 ½ years after having rhythm issues since 1992.
I do now have a Bradycardia issue because of the decades of AF but I do not regret having all the ablations my quality of life being better now than for all those years.
After three failed catheter ablations, personally I would look into a surgical ablation, where success can often be found in difficult cases like yours. We have a number of threads on this and one of our members, MummyLuv can also offer more information. Yes too young in my opinion to be considering pace and ablate, given what you've said.
As to your heart rate at 130 -- by all standards this is too high a resting heart rate, and can potentially damage your heart over time. I would therefore notify your ep right away to take steps to get it down closer to 100 or 110 at the highest.
I'm assuming that you're actually in atrial fibrillation at 130 because 130 is a very common rate with atrial flutter as well. In many cases, the only way to distinguish the two is with an EKG.
yes. im sorry. I should have differentiated. its atrial flutter according to ekgs. The cardioversion today has got me down to 67 at rest. But of course…. for how long? I have a follow up with my EP in a few weeks and will ask about tge surgical ablation and read up as you suggested. thank you mjames1!!!!!! I did want another choice
Surgical ablation is for atrial fibrillation, not atrial flutter.
Atrial flutter is not uncommon after an atrial fibrillation ablation and in many cases, if it persists, can be fixed with a flutter ablation, which is different than an atrial fibrillation PVI.
So...if atrial fibrillation is still an ongoing problem, then consider a surgical ablation. But keep in mind you may still need a flutter catheter ablation if the flutter is persists.
ahhhh so the maze operation it would not be suitable for me. 😣
I started with Afib. Had original ablation but I do remember the EP saying these last two ablation for the flutter were ‘easier’ to do. But result has always been the same.
Im sorry for not being clearer. My AF went from zero to one hundred (it seems) in 4 years and im not great on the technicalities.
Mini maze (surgical ablation) is suitable for atrial fibrillation, but not for flutter.
You can get a catheter ablation for flutter which usually originates on the right side, but can often be on the left side (atypical flutter), especially if you've had multiple ablations for atrial fibrillation.
There is also something called a hybrid procedure that is part surgical and part catheter based.
Many ep's and cardiologists are not overly familiar with surgicsl ablations, so if suitable you would want to consult a cardiac surgeon directly.
One name that comes up a lot is Dr. Steven Hunter at Northern General Sheffield. He works both through the NHS and Private.
Are you still taking flecainide regularly? That is known to organise arrythmias and cause flutter in some cases, in others it causes no issues at all. For me after 2 years of helping it made things considerably worse. healthunlocked.com/afassoci...
You seem to be having the best treatment and are being well looked after. I can add little to what others have said. A fixed heart rate is also a product of atrial flutter, as that is always a ratio of the atrial rate of ~300bpm. 130bpm isn't a ratio of that, of course, but the flutter rate can vary. It's a thought as AF and AFl can co-exist.
When I had atrial flutter and my heart rate would not drop below 100+bpm, I was given digoxin, which finally did the trick and brought it to well below 100bpm.
Thank you Steve. I AM well looked after. There is immediacy offered throughout my treatment and my EP is a wise and compassionate man. I am on digoxin. Its one of the first medications he put me on. So at the moment im on sotalol 80mg xbd, apixaban and the digoxin plus lasix.
Im hoping that even if I tip out of sinus rhythm at least my rate may stay below 110. I would be satisfied with that for a while. And yes, a 4th ablation is still an option.
I think ive been projecting too far into the future. This forum has helped me a lot this week.
It's a good forum with a wide range of experiences to draw on. It must be hard to cope with a persistently fast rate. There are worse conditions, it goes without saying, but this one is very trying, not least as it can so easily push the anxiety so high.
Have you looked at a mini-maze? Mr Hunter at Sheffield has treated a few patients on this forum.
You have a very good chance (90% plus) of long-term (five years and more) of freedom from AFib because you managed to convert to NSR with a CV. It is a good sign.
If you can afford the price of a second-hand car, Dr Ohtsuka who did my Wolf Mini Maze in Tokyo 19 months ago, charges something like £12,000 for the procedure incl tests and hospital stay.
Good luck !
[EDIT]
I just read that you were told that it's flutter which, unless it is atypical, is not fixed by a mini maze. Dr Ohtsuka does not charge for a Zoom consultation and may be interested to see your situation and advise you accordingly. The patient in Tokyo previous to me was from NZ.
I’m 60 & at 58/59 was in same place as you. It was that I was too young to P&A but after 3rd ablation & 2 CVs went into HF - thought I’d had it. All of a sudden 5 months later all was well. Apixaban 5 Flecainide 100 both twice daily, bisoprolol 2.5 in a morning, Losartan 50 at night (many other stuff but not for heart) it just went into NSR all of a sudden. It went off after a fall downstairs and took months to settle but since retiring there’s less stress & the majority of the time it’s all ok. EP said he would ablate again to see where was sneaking through - I’ve not needed it so far. When it do have a wobble I take extra bisoprolol which usually sorts that event.
Have you got Facebook - take a look at the site set up by MummyLuv from here - she had a different procedure as did a few more people from this site - I’ll look up the link for you - they’ll give you more information about their experiences I hope you feel better soon tho!
If you go on Facebook & type this it should take you to the group (it’s what Saulger said above re Mr Hunter Sheffield
Minimaze & hybrid treatment 4 atrial fibrillation In UK, peer support group
thank you Afibflipper - yet another post that gives me hope that im not ready for P&A yet, and Im not at the end of the road either.
Its too easy after years of ‘failure’ to think that every procedure or combo of meds will also fail and that you’re done for. I dont believe that afib or a flutter kill you but certainly, at times, its killed my qol!
Yea they don’t kill you although at the time it feels it will - it’s the consequences of what it does that can
Don’t despair, I’m sure something will be right for you. My go to’s are, no caffiene, limited salt as I know excess does affect me, I did 2years no alcohol at all (broke it recently when turned 60 tut tut). Try to limit stress & not getting over tired - definitely a factor for me as I have insomnia so trying to work was very bad combo (retired now & much better). Talking to others on here is a godsend, people who understand it and how bad it feels despite what you may look like on the outside others don’t get how it feels. Getting a good GP & EP is a good start too. My GP is brilliant (the only one in the practice that is) so seeing others is a nightmare. My new EP this time was very thorough from the start (we found out some quite serious issues from previous treatment that I was never informed about some 15 years ago!) He was really good and obv in the end I am eventually so much better than a couple of years ago. Oh & if necessary weight loss helped too Good luck you’re not alone x
Ive lost 15 kilos in weight and also gave up alcohol 2 years ago. Caffeine I limit to one mug a day because it does feel like its the only thing Im ‘allowed’ to enjoy anymore. Honestly, if they told me to give it up I would … well, I dont know. But😱
I know I CAN do better with sleep. And better with limiting salt and stress. I will try more with that from tonight. Thank you for your encouraging words Afibflipper!!!! Its true no-one else understands.
you may be like me BBs do not control your heart rate.
For over 2 years now I take
120mg AM CCB Calcium Channel Blocker I'm controlled h/rate @ 60s Day
Night on 3 different 24hrHeart Monitors with each different med I stay @ 47avg at night bpm but Metoprolol gave me pauses at night.
2.5mg PM BB Bet Blocker Bisoprolol I'm controlled BP.
Never had a cardioversion, ablation or been on anti-arrhymnic meds. Anyway can't because of abnormal structure to my heart. Anyway I think ablation how they do it is barbaric. Scarring the heart! Ib t5he future there will come a better way. And lots of ablation patients end up with a oacemaker.
Speak to your cardiologist.
Now I get no symptoms. Just pace myself on activity and elevation levels of earth! on my journey.
I user to get afib for several hours a week, always went back to NSR when I got to sleep. When I found out I had kidney failure too, and the only thing a person could do on their own was a super healthy diet (vegan, no sweeteners, no processed food), I went on the healthy diet, started by giving up sugar and sweeteners (my experience suggests that a lot of people are addicted to sugar) and after that, choosing what to eat became easier. Long story short, after several months of this diet and some weight loss, I realized I wasn't getting afib episodes any more. Nobody on any forum has even acknowledged me or my experience, but here it is, again.
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