Dear forum community, I have a question and at the same time I am very concerned about the answer. For more than 10 years I suffered from PAV which came more and more often and is always very symptomatic. The worst part for me is the feeling in my chest, the pounding and the feeling that can best be described as a washing machine running rough, rattling and jumping chaotically around the bathroom, but unfortunly the "bathroom" is my chest. It's like losing myself as the feeling is so central. It's really unbearable and for me much worse than the other symptoms like being a little short of breath. I've always had hope that a pacemaker plus AV-node ablation might be a last resort when all medications stop working and even "normal" ablation fails. But now I read that exactly this feeling will not stop after pace&ablate. Why not? I believed that this feeling comes from the chambers, which also generate the chaotic pulse, which would be beating rhythmically again after pace&ablate. I don't know how to go on living if I have to endure this feeling forever. I can hardly put into words the desperation that overcomes me at this thought. I went through many difficult stations in my life and was always brave. But here I have found my master, although it is "only" a feeling. But this feeling takes my life. Please excuse me if I sound so tearful and desperate and have written so much. Maybe someone can give me a glimmer of hope after all 😔 I wish everyone a lot of joy and a happy new year.
Fear and despair AV-Node may not help... - Atrial Fibrillati...
Fear and despair AV-Node may not help with my problem
The AV node ablation will not stop the rough and tumble in the left atrium. With the AV node gone and all chambers disconected, the pacemaker will ensure that the left ventricle ( the main pumping chamber) has a paced and regular beat so the feelings of fatigue will be a thing of the past. It can't stop the left atrium , however, and many people are still aware of the feelings. Quality of life is usually greatly improved due to better energy resulting from the regular pulse and blood flow.
".....people are still aware of the feelings."
Then I'm finished.
Nothing like a positive attitude!
It's true Bob and I've had them all my life. I'm an optimist, but this is just about the worst case scenario, that these feelings in my chest don't stop anymore and I know these feelings and I know that it's impossible to live a good life with them. But I would like to thank you very much for your answer and the time you have set aside and I hope that you will always be well.
Bob is clearly cut from a tough kind of cloth! 
You are clearly feeling despair. My only answer for you is to discuss this with the cardiologist and possibly to get a second opinion, also. Finally to say that if you can be given some kind of positive reassurance that what is happening is of no long term consequence to your health, then won't that allow you a little more peace in your life? I find it is fear of the unknown and of the future that brings anxiety in its wake.
Steve
Thank you so much for your answer. No, it's not the fear of the unknown, because I know the feeling I know what it's like to be there.
I have had AFib for many years. Tried just about every drug on the market to control it,to no avail, so I do understand your journey.
I was referred to a different cardiologist in April, he suggested pace and ablate. I had the pacemaker implanted in May of 22 and the ablation on September 13, 2022. The last bad episode was on September 12, with a Heart rate heading toward 200. I have not had a bad episode since, only an occasional ( tic) that lasts for a second or two. It is a big decision to have the AV node ablation, but AFib had taken over my life .
I feel like I have a life again, so for me it was the right decision.
Hang in there, find a good cardiologist and good luck.
Just to say as last resort my only option for treatment was Pace and Ablate & I had RST Pacemaker implanted June 2018. I am probably, judging from other responses on this forum, extremely lucky but as soon as the PM was implanted - no more AF. When I was called 6 weeks later for the AV node ablation I wanted to wait and really glad I did because I have had virtually no AF since, just a couple of episodes during COVID and Pneumonia.
Please do not give up hope and also remember that you sense the feelings so much because the chaotic pulses are going through the AV node and affecting the ventricles, cut the connection and the sensations, although you may still sense them, should be of much less intensity - at least that is my understanding. Suggest you go back to your EP/Cardiologist and discuss if there are other treatment options such as ablation?
I feel your despair Tom Tom. Many of us here have had horrendous symptoms and thought life was over. Indeed when in my worst cardiac arrhythmia situations I hoped I would pass quickly as living at that time seemed impossible as I experienced such unbearable pain both physically and emotionally. All driven by the worst symptoms of arrhythmia. I truly didnt know it was possible to feel such physical pain in my chest and throughout my body and not die there and then. Going to the brink of unconsciousness again and again every few seconds was unbearable. And yet I survived.
You are probably in the darkest place right now but please do not give up hope. Speak with your medics at length, let them help guide you and dont be afraid to explain your concerns. You have weathered some awful storms by your own telling and this is another one but you will prevail. There will have been other occasions when things felt hopeless but you are still here. Never ever give up, nothing goes on forever there is help out there for your physical symptoms and the emotional trauma they bring. Hold on their friend. Wishing you well.
Your not alone in feeling the way you do. I know that’s not a great comfort to you but I feel your misery and despair. I wish I had an answer for you but I simply dont know how to help you, you feel bad now but I bet something will come along to make you feel better than you do now. Like others have said never ever give up.
I'm not sure what PAV stands for?
Sorry, PAF.
Ah ok, sorry. There are so many different arrythmias and I for one don't know all the names and acronyms . Thought it was one I didn't know 🙂
Hi
Tomtom.
Aren't I so lucky that I dont feel my AF and rapid persistent Heart Rate symptoms.
But interestingly I read that a new PACEMAKER is about to be launched to give relief overnight as this new developed PACEMAKER mimics H/R to reality.
I say this because hearts naturally drop down at night and why would you have a pacemaker which regulates your heart the same through day and night.
A grand example is me through med changes my heart at night averages 47 on the 24 hour monitor.
It has never changed. Days on monitor were Metroprolol 187 beats per minute, 156 on Bisoprolol and CCB Dilltiazem 120mg 77=88.
As I see it I would not want a pacemaker which regulates my heart day and night the same.
Food for thought.
cheri HAPPY NEW YEAR 2023. 73. (NZ)
I don't have any informed opinion to offer, but these things DO have a potential to clear up themselves or become far less noticeable as our bodies compensate. I have had permanent AF for some years now and a resultant stroke a few years ago, but now apart from beta blockers and anticoagulants I now feel so good I am almost back to how I was before all these things happened. I am very rarely aware of my AF now. While I cannot say of course that this might happen with your central issue, get the best advice you can and never give up hope, as our bodies are remarkable machines and have the capacity to help us repair ourselves if we are kind to them, and eat healthily, do not abuse then and take as much regular exercise as we can. I hope the same will be true for you and that your despair will rapidly turn into optimism and looking forward to the future. God bless you and Happy New year.
hi I’m just popping in to say, like everyone on here from all parts of the globe, we all can relate to your anguish. However I want to second CDreamers post of positivity. I had the raging tumbling chest like a rat in a trap and since having my pacemaker some 12 years ago it’s just gone. I refused the Ablate option and although I’m in permanent AF I have lost the banging chest and just continue life with gratitude that being breathless and tired etc is acceptable . I still have the ablate option if I ever wanted it.
A Pacemaker is such an easy operation and worth trying.
I think positive, there’s always someone worse than you.
Xx
You've had some great responses already and I hope they've offered you some solace. I'm particularly moved by what you said here "It's like losing myself as the feeling is so central. It's really unbearable and for me much worse than the other symptoms like being a little short of breath." I SO relate to this - the sense of losing onself. My offering is that the heart has many thousands of neurons that in effect form its own 'brain' - similar to our gut brain. These neurons send distress signals upstream to our main brain, causing alarm and emotional distress. People don't talk about this much, but it's why we have the feeling of doom when our heart is in trouble.
Knowing this- that it's one part of my body sending messages to another part - helped me. I now talk to my heart if I get AF - I speak to it kindly with encouraging and soothing words- it helps me calm down and get through the feeling. And when the feeling has passed, and Sinus rhythm returns - that's a feeling of blessed relief isn't it - we have returned to ourselves. So I think about that too - how pleasant it will be when the episode has passed.
I hope this helps you to find your way through.
Sing well, I have permanent AF so don't get that returning to myself feeling in the way you describe but I found your post helpful nonetheless. I do think understanding what is happening within your body is a key tool. And learning to be with the uncertainty.Thanks for your post.
Thank you! I'm so grateful for this group. It's helped me so much to get through a very tough time.
What a lovely kind post 💕
That was very good to read. For people with "pure" AF, I think your advice is excellent and ought to help a lot. The problem for many, I suppose, is that the arrhythmias aren't only AF. That's what I find quite tough to cope with at times (today, during an otherwise lovely, if wet, walk, for example!).
Steve
Yes, thanks for the feedback and making it inclusive of other arrhythmias. Allows me to feel fortunate. For things like tachy and ectopics I'd be recommending the 6 breaths a minute technique. Just been reading James Nestor on Breathing- A Lost Art. He talks about the 'in for 2, sighing out for 1 approach' (which I use) and how it allows us to hack into the vagus. It's not woo, science is looking into it. Doesn't get me out of AF have to say but does calm.down ectopics and tachy. Rare for me to get tachy - only if I get wound up!
Tom-tom there is always hope. I know sometimes that's easier to absorb than other times. I get down about my situation sometimes...especially when other challenges cooincide. It can all get overwhelming. And then I remember I've been here before and got through.It sounds like others, in this thread, have been there and the procedure has helped greatly. That's something to work with.
Hi, aren’t you getting a bit ahead of yourself with the angst? You say a pace and ablate might be an option if medication and ‘normal’ ablation fails. That suggests you haven’t had either yet but maybe you mean you have and they’ve failed? But regarding your central question, this is what happens when you have PAF. Your atria (the upper chambers of your heart) quiver chaotically and very fast. The beats are passed through the AV node to the ventricles but the node can’t keep up so the beats in the lower chambers are slower and irregular. If your AV node is destroyed and a pacemaker controls your ventricles your heartbeat will be steady. Some people will still be aware of the ‘quiver’ but the ‘badly loaded washing machine’ effect will disappear. I am lucky in that I have had PAF for a long time and my heart doesn’t usually react so violently as it used to, however, if I am lying down when AF starts up I can sometimes feel both the quiver and the ‘mad butterfly’ effect and the quiver is not too unpleasant, more like a bee. I have also had runs of ectopics which are very scary and feel more like what you are describing and some posters have been told that their ‘AF’ is in fact tachycardia with frequent ectopics!
I hope you won’t be offended if I say I think anxiety may play a part in your symptoms? If you have very symptomatic episodes it is natural to feel anxious when an episode starts and you can end up in an ‘anxiety spiral’ - the more anxious you are the worse the AF gets. You may hyperventilate which will also worsen your state. I suggest you try breathing exercises which will help with both reactions as well as distracting you.
Best wishes ❤️🩹
I had pace and ablate last April best thing I ever did. I have my life back!!Sonetimes briefly and only very very slightly i can feel some AF sensation, but does not affect me whatsoever and thats considering when I go for my PM check they tell me I am in AF most of the time and I cant feel it so for me it works as before I was pretty much in the same situation. x
hi Tom Yom
Last year at this time I’d just had enough. That horrible sensation felt like a group of people clog dancing inside my chest. I couldn’t think focus or do anything. That feeling incapacitated me. I had ablation number 1 and everything got worse plus breathlessness That went on till June of this year. By then I thought or knew I didn’t want this to be my life. Then I had a cardioversion which lasted 2 days . Then I was given another ablation and up popped more arrhythmias. My mind was all over the place and I only wished I hadn’t asked for help as I felt worse now. Then my EP said come on we’re nearly there. So had my third ablation at the end of September and I’ve never looked back. Glad I had courage glad I had an EP who I trusted glad I did it. This forum has been very helpful to me. As someone says. Afib is a mongral of a disease. There is no quick fix but lots of things can help and lots of lifestyle changes. Keep going x
Hello Tomtom, Have had a pace and ablate after an awful couple of years. Passed out twice, no energy, breathless and walking made me breathless. After the pace and ablate my life improved and returned my life to the level prior to AF.
Must admit had a long conversation with my cardiologist before agreeing to commit. Agree with BobD a positive attitude will help tremendously.
Best of luck
Dave
hi Tomtom, great responses above especially for those who have had pace and ablate.
I want to share another potential option that may be worth looking into where the heart goes back into sinus rhythm and you don’t continue to have the left atrium washing machine. That’s mini maze. I see you are in Germany. If you have access to private healthcare Prof Salzberg carries out mini maze in Germany.
I've never thought about this option before. It is a good idea. It may not be feasible?
Hello Tom Tom!
I feel sad reading your note. After battling with this heart issue now for 26 years, I sympathize with you! First of all I will tell you what does not work with the bad symptoms, ANXIETY. And I feel you are now so mad, anxious and negative that all this add to your misery. I think we all agree that it would almost be nicer to be in permanent Afib, than the one that pops up out of nowhere and then stops on its own either in few hours or days! I KNOW from my own experience, that if you get exited, mad and anxious, that there it is again, can’t take it. It will make you feel worse. Try stay calm, lay down head elevated and breath calm long breaths, this will eventually even slow the beats a bit. My ablations did not help me, but have heard many nice end results for many people, especially male. Tom Tom what did help me was a pacemaker! No no didn’t cure it of course, what they’ll tell you right away. BUT it made my symptoms much more tolerable. Of course you have to talk with your cardiologist etc. I have tried many meds during these years (my episodes came on daily and weekly and lasted a long time) but now only thing I take is a small 1.25 to 2mg of the beta blocker Bisoprplol and of course the anticoagulant, Apixaban(Eliquis). And all of us have had to change eating and drinking habits. Alcohol, not good, might get away with tiny amount! There’s other triggers, maybe you have studied all these during these years. Lately interesting thing happened with me. I was on low gluten diet and no white flower and sugar much. AND I WENT 4 MONTHS WITHOUT AN EPIZODE!!!! Mine were weekly. Christmas brought cravings for goodies, that I started baking and of course could not keep my mouth empty of them. Sooo, now I have had already five different episodes! Who knows maybe I found some solution.
Don’t give up Tom Tom, get to know your body and try calming down and be positive!! This really doesn’t need to be the end of the world for us! Unless you have some other underlying issues that add to your problem. Doctors and tests answer that. Good luck! Don’t Worry Be Happy!
Maybe you know that song.
First of all, thank you for the detailed answers which you send me as a gift. The idea that people from all corners of the world take the time to write to a complete stranger, with the intention of giving him a bit of hope is just incredibly wonderful. I'm not giving you a name because I really mean all of you. I don't really know what else I could answer for you right now.
As I already wrote, I'm actually not one of those people who throw in the towel quickly or at all. After a serious illnes i survived with a severe nerve injury and literally lived in pain for 4 years, 24 hours a day, 7 days a week. But I never lost hope. I didn't even give myself the space for that thought, but fought, and waited for my body to heal, even though the doctors said that the outlook was low. That was 15 years ago and for me it is as if God had given me a second life, for which I was infinitely grateful, as I was able to see my children grow up.
You've reminded me of something crucial. You reminds me of hope and also that hope in the end presupposes a hopeless situation. What I mean is that you don't need hope when you still see opportunities, but when you don't see any more opportunities, when you think that there is no way anymore, then you need hope. And in the end, that simply means: Never give up. I'm sitting here on my bed and my heart is beating softly, calmly and rhythmically. And that makes it easy for me to respond to your answers in this way.
In addition, you have some important information for me. For some people, even among you, the feeling doesn't seem to disappear completely after inserting a pacemaker, however it least to become gentler, not to be quite as dominant. For some people, it even seems to disappear completely. Then the reminder of the body's abilities to adapt and get used to. It may take time, but it's likely that there will be a certain habituation effect. Another thought is that medical advances are growing and that's for things for which we don't have a solution today, maybe find one tomorrow. And since this disease is generally not fatal in the end, there is also reason to hope here. And then some of you said that nothing is forever, and I know you mean that there should and will be a solution to this problem too. But it reminds me of something even more far-reaching, which is that nothing really lasts forever, because our lives must also end one day. Nothing lasts forever and we simply have to make the best of everything and ultimately trust in God that everything will be alright in the end.
To see or read that people answer me while be more or less in the same situation as me, is overwhelming. Some of you may be a bit more emotional than others, but from all the answers I read I feel real sympathy and a desire to help another person. Please forgive me for writing such a long answer but your sympathy prompts me to do so because I see that as a very big gift. I wish you all good health and happiness, and that whatever may be bothering you may be easier. And I wish you a happy new year!
Now you have got me snivelling Tom Tom, but happy hopeful tears as your post is so lovely.
Maybe I can give you a bit of hope as well. I won’t write my whole AF story as some will already know it and it can be seen on my profile but I recently had 3 Rd ablation , this time for tachychardia and flutter which had developed after an ablation for AF. While I waited for the next ablation to correct this, I had a heart rate of around 140 constantly for about 6 weeks. To start with it was unbearable but eventually I think my brain accepted it as the new normal and apart from leaving me exhausted, I stopped feeling it in my chest.
Luckily the latest ablation has been successful but should AF return, I have been told the next thing would be pace and ablate. Like you I have been worried about the prospect of this but I now believe that my brain would normalise the fluttery feelings in my chest and zi don’t think I would feel them. As long as my ventricles were beating steadily so that I wasn’t breathless, I would be ok. and I think you would be too.
You sound as if you have overcome so much that I am certain you will overcome this fear too.
Happy New Year
Jane x
I had Pace & Ablate last March. Before I suffered terrible AF symptoms. Since, I feel none. I’m totally unaware of the AF. I wasn’t sure how I would go on before and now it’s like a new life. I feel good, have good energy for a 78 year old and can manage most everything on my own. It’s a tremendous blessing. I was out of options after 13 years of a lot of misery. I wish you well.
I love your story especially about the energy that’s really all I want I just want to be able to do things again and not be a lump. Today has been horrible standing up I feel like I’m going to fall down I have not had this feeling for quite a while. Now I remember how horrible it is. My heart is going berserk I can feel it in my throat. I will listen to the doctor on Wednesday on where we go next and if I am unhappy I will keep my appointment with the other EP for a second opinion. Right now I really want that opinion and other options if he has any.
Hello tomtom, when I first began having afib problems much like yours although I had had bouts of blacking out and light headedness and overall feeling very poorly I was certain I was going to die, being an ex-athlete prior I was sure life was over but 32+ years later I am still here thanks to the many Drs. that have given me treatment and by ridding myself of self -destructive thoughts. I think a lot of us think the worst at first., I know I did. This has been a blessing to me and it can be for you to as it drew me closer to the LORD which has been with and brought me through this and numerous other life-threatening situations and seeing I am no one special he will surely do the same for you, just give it all to HIM. I pray that GOD will show you this is not the end but just the beginning. I Pray this will help you overcome your fears and anxiety but just know we have all been through it, just do what the Drs. tell you to do and put your trust in the LORD. May GOD Bless you and give you Comfort. I am now 76 years young.
you are not alone. Many of us who cannot seem to get answers yet feel as you do especially with the New Year’s Eve here because I think we all hope for better. My body does not seem to want to cooperate with anything for any length of time. I will know more Wednesday but I already know my EP is not thrilled about another ablation for me. The only other thing he has mentioned is a pacemaker and I really don’t want my life gobbled up by one of those yet however I’m beginning to lose hope. Since my cardioversion failed digoxin seem to kick in and greet and my heart rate has been fabulous until the last two days. Once again my body fails me. I was actually getting too low the other night and then next morning my heart rate is back up over 100 and has continue to stay there. I have a feeling my a fib is back joining my atypical flutter I already knew I had full time. There are no guarantees and anything in life as you know and our bodies are no exception unfortunately. Talk to your doctor tell him your fears. I spent six months in the 150s for a heart rate. I had 3 1/2 weeks of heaven feeling normal after a cardioversion but sadly the second one did not work even with three shocks. Looks like this old car needs to go to the junkyard no more jumpstarts left 😭💔. I have tried to be positive but I’m starting to wonder why I am even still here when all I seem to be able to do is nothing. Best of luck on your end talk to your doctor I am talking to mine soon and I’m also getting a second opinion the end of the month with a doctor I have been trying to see. I still am not giving up even though I might sound like I am. There is so many people on here many are worse than us but there’s always so many who have found some type of success getting relief I am hoping to be one of them sooner than later. Try to have a happy new year think positive thoughts or it won’t happen
I am so sorry you are going through this. The only thing I can offer is taking a look at other procedures. I don’t know if it is feasible for you, but there is a mini maze procedure called the Wolf Mini Maze which is a minimally invasive heart procedure done by a thoracic surgeon and deals with the outside of the heart and the ganglionic plexi which is believed by these doctors to be the catalyst for the rogue signals. The innovator of this procedure is Dr Randall Wolf in Houston Texas. However, there is a doctor in Japan, Dr Ohtsuka who performs this surgery and is much less expensive. It carries an 95-95% success rate and is a one and done surgery. Maybe check it out at wolfminimaze.con for more information. It was my saving grace and I’ve been AFib free since surgery 6 months ago. There are people 19 years out AFib free. I don’t know if it’s feasible for you but I thought I’d put it out there for you to take a look at if you wish. There have been several who were offered pace and ablated and refused it, then had the mini maze.
Good luck in your endeavors.
I would like to thank everyone once again very much for their answers and sympathy and I am deeply moved by the sorrow and suffering that so many have to go through as much as I have experienced here. And I am very moved by the bravery with which they do this. I wish everyone a happy new year and relief this year, whichever way it may come. We shouldn't lose our laughter and our joy and I hope that we can do that, I hope I will succeed and I hope you will succeed and I pray to God for that. Happy new Year 💛
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