Have had 3 ablations but constant palpitations

Posted by sandrah2024 @sandrah2024, Apr 11 1:01pm

It started in 2015, HR went to 205bpm, diagnosed atrial fibrillation. Medication and cardio conversion in the ER were performed and I was sent home. However, in the next few months I had many episodes of A-Fib. Very scary and the anxiety was intolerable. I had my first ablation in 2015 and was good for about a year. Then my heart started acting wierd again. But this time my HR would go up to about 160bpm and stay there. These episodes lasted about 20 minutes. As the year went on the episodes increased dramatically and within a 3-week period I was in the ER 9 times, and had 3 cardio conversions. I had another ablation and again it went well and I was in good shape. Diagnosis was now atrial flutter. Last year 2023 I had my 3rd ablation. But my EP had left our area, so I contacted him and flew to his new clinic. He is a truly amazing EP and I have great faith in him. The reason I am writing this is I get palpitations all the time. Probably about 3 or so every minute. Sometimes I can feel my heart actually hesitate for a second or two and I get dizzy and feel I am going to faint. I have just turned 80, I am very fit and exercised all my life. I walk 3 miles 4X/week at a brisk pace of 17:30mph. I lift weights 2X/week. I follow a mediterranean diet and drink good California wine:)
I am tired of the anxiety and try to put it out of my mind and live in constant fear that my heart is going to beat itself right out of my chest. Please tell me there are others out there like me because only you know what I am experiencing.

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Unfortunately, Sandra, this is not an uncommon story. I wish I could say you're in 'good' company, but....you're not alone.
The palpitations, unless determined via a device that can read it properly to be AF, are likely to be PACs, or premature atrial contractions. The heart gets a double beat, and then skips a beat, and then compensates for the skipped beat with a thump. The thump is what is unsettling as it is what we feel, and it's outta whack...as you well know.

However, there can also be rather long, and worrying, pauses, sometimes lasting several seconds. Often this is due to the heart wanting to be in NSR (normal sinus rhythm), but beta blockers or calcium channel blockers are preventing it from keeping up. In my case, when my first ablation failed at a whole whopping six days, I was in the ER with pauses that ran....the nurse who came rushing in from the hall station held out her two index fingers about 6 inches apart, saying my heart had stopped beating for that long on their monitor. I went on amiodarone right away, but stopped my 50 mg of metoprolol cold. The metoprolol was interfering greatly with my already irritated heart's desire to restore normal rhythm.

Also, it's not unheard of for Flecainide, if you're on it during the blanking period, to actually make things worse. It brings on arrythmia in some people, and the EP will have to find a different medication, maybe Sotolol or propafenone. They didn't fool around with me and I went on the Big Drug right away...amiodarone.

I can empathize with how it makes you feel, and how exhausting and unrelenting it seems. I was there. Friends and family told me I looked grey.

Yet more information: it isn't uncommon for an apparently successful ablation to suddenly break into flutter. Happens surprising often, and it can also be relatively straightforward to nip with, unfortunately, yet another ablation. Again, happens all the time. In my case, and this is also common, you don't show AF on the Holter monitor at the 10-12 week assessment, but you'll show quite a few PACs. When the outreach nurse read my results to me over the phone, her voice emphasized '...a LOT of...' PACs, which at least told me I wasn't going crazy.

It sucks going several good days after an ablation only to find something else taking its place. On both ablations, I was fine for days, then had to go to the ER. They simply sent me home with more metoprolol the second time, and I eventually reverted to NSR. The same outreach nurse, when she learned they didn't want to cardiovert me, told me, again emphatically, that the decision was absolutely the WRONG one. Every time your heart is adjusted via surgery, it's a cranky beast, but it's also a 'reset' beast. You treat it like any other new arrythmia, and I should have been offered a cardioversion. But, I ended up being fine from the day I reverted to NSR, later that evening, and have not looked back since. I celebrated my year without arrythmia in February, and my heart continues to beat properly. So, there's hope for all of us. It just sux waiting and enduring.

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@sandra2024
Hate to say belong to same group with the fear of having PVCs and AFIB. I had on ablation on RV and fixed the issue. The LV though has 3 areas causing PVCs that have worsened to 1 and every 3 beats.

I wanted to do ablation on LV but EP wants to try medications. So far medications not working. I think medical professionals need to look beyond medical impact of this disease and look at mental aspect of it. The more stress you have the more PVCs and AFIB you are going to have.

I do take a medication for anxiety. Have you asked about that with your EP?
You are not alone though in your feelings. Good luck.

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I also have afib and flutter and am on Sotalol and a small dose of carvedilol and valsartan. I've had a few ablations as well and it keeps returning. My heart wants to beat too fast so the last resort will be a pacemaker that will be 100% responsible for my heartbeat, which I want to avoid. Last December (2023), my doctor performed a "regular" ablation and also a "Vein of Marshall with alcohol infusion ablation" and it has worked thus far. I'd not heard of the vein of marshall... before but it's a vein in the back of the heart, not in the same place for everyone and can be difficult to reach, and in a very few small percentage of patients it can't be reached. If you've not heard of that one before it might be something to ask your doctor about. There are YouTube videos that explain if you're interested.
I wish everyone good health.

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I’m just like you. I’ve had two ablations and now on amiodarone as I’m in the three month healing process. The flutters are starting to return and now I’m wearing a two week monitor. I’m also on Camzyos for HCM. I’ve totally given up wine and alcohol which is breaking my heart. Nothing like a good wine with dinner. We’ll see what they want to do to me next. Good luck to you.

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@gloaming

Unfortunately, Sandra, this is not an uncommon story. I wish I could say you're in 'good' company, but....you're not alone.
The palpitations, unless determined via a device that can read it properly to be AF, are likely to be PACs, or premature atrial contractions. The heart gets a double beat, and then skips a beat, and then compensates for the skipped beat with a thump. The thump is what is unsettling as it is what we feel, and it's outta whack...as you well know.

However, there can also be rather long, and worrying, pauses, sometimes lasting several seconds. Often this is due to the heart wanting to be in NSR (normal sinus rhythm), but beta blockers or calcium channel blockers are preventing it from keeping up. In my case, when my first ablation failed at a whole whopping six days, I was in the ER with pauses that ran....the nurse who came rushing in from the hall station held out her two index fingers about 6 inches apart, saying my heart had stopped beating for that long on their monitor. I went on amiodarone right away, but stopped my 50 mg of metoprolol cold. The metoprolol was interfering greatly with my already irritated heart's desire to restore normal rhythm.

Also, it's not unheard of for Flecainide, if you're on it during the blanking period, to actually make things worse. It brings on arrythmia in some people, and the EP will have to find a different medication, maybe Sotolol or propafenone. They didn't fool around with me and I went on the Big Drug right away...amiodarone.

I can empathize with how it makes you feel, and how exhausting and unrelenting it seems. I was there. Friends and family told me I looked grey.

Yet more information: it isn't uncommon for an apparently successful ablation to suddenly break into flutter. Happens surprising often, and it can also be relatively straightforward to nip with, unfortunately, yet another ablation. Again, happens all the time. In my case, and this is also common, you don't show AF on the Holter monitor at the 10-12 week assessment, but you'll show quite a few PACs. When the outreach nurse read my results to me over the phone, her voice emphasized '...a LOT of...' PACs, which at least told me I wasn't going crazy.

It sucks going several good days after an ablation only to find something else taking its place. On both ablations, I was fine for days, then had to go to the ER. They simply sent me home with more metoprolol the second time, and I eventually reverted to NSR. The same outreach nurse, when she learned they didn't want to cardiovert me, told me, again emphatically, that the decision was absolutely the WRONG one. Every time your heart is adjusted via surgery, it's a cranky beast, but it's also a 'reset' beast. You treat it like any other new arrythmia, and I should have been offered a cardioversion. But, I ended up being fine from the day I reverted to NSR, later that evening, and have not looked back since. I celebrated my year without arrythmia in February, and my heart continues to beat properly. So, there's hope for all of us. It just sux waiting and enduring.

Jump to this post

Thanks so much for such insightful information and so happy to know that your HR is normal now. There are many days when everything feels "right" and I feel so relieved, but then it comes back. Such a roller coaster.
Be well!!1

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@hoping1

I’m just like you. I’ve had two ablations and now on amiodarone as I’m in the three month healing process. The flutters are starting to return and now I’m wearing a two week monitor. I’m also on Camzyos for HCM. I’ve totally given up wine and alcohol which is breaking my heart. Nothing like a good wine with dinner. We’ll see what they want to do to me next. Good luck to you.

Jump to this post

Its comforting knowing that I am not alone in this up and down battle. Some days are good though, and feeling normal for a little while is so nice. They are always coming up with new procedures, so perhaps there is light at the end of this tunnel. The amiodorone didn't work for me. I am on a daily dose of Bisoprolol....who knows if it helps or not. Best luck to you too.

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4-2-2024 ablation. Was in a fib but last month afib pulse 125 with heart attack symptoms
Elevated enzymes at the hospital. Afib causing damage
Not sure I understand will first see Dr this week since procedure. Had difficult nausea for 9 days. Last couple days ache around lower abdomen and extremely tired. Not sure if normal. If not better Monday will call ep even though appointment is Friday

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You say "I have great faith in him. The reason I am writing this is I get palpitations all the time. Probably about 3 or so every minute".
So what does your EP say about these events? I understand this is disconcerting but have you had a monitor on and or a 12 lead EKG that also revealed what kind of palpitations these are?
Yes there are other people who have these same problems. Are you now free of Afib and Aflutter? Can you feel the difference between the different palpitations? Afib ablations are different than Aflutter ablations which are different from PAC ablations which are different from PVC ablations. What this means is all these events requiring ablations (assuming the are not the same) would be coming from a different place on the heart. My EP was considering doing an Afib ablation(2nd one) and also doing one for my PACs. That would require going through different places to the heart to ablate them. Right now the PACs have dropped considerably so we are waiting to find out more info. I had a holter monitor for a month. Not enough info to prove I need both approaches so I am now using KARIA mobile device to see if I can record the events.
I must agree with you when the palpations are very frequent it is a very uncomfortable sensation.

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@bhb30602

I also have afib and flutter and am on Sotalol and a small dose of carvedilol and valsartan. I've had a few ablations as well and it keeps returning. My heart wants to beat too fast so the last resort will be a pacemaker that will be 100% responsible for my heartbeat, which I want to avoid. Last December (2023), my doctor performed a "regular" ablation and also a "Vein of Marshall with alcohol infusion ablation" and it has worked thus far. I'd not heard of the vein of marshall... before but it's a vein in the back of the heart, not in the same place for everyone and can be difficult to reach, and in a very few small percentage of patients it can't be reached. If you've not heard of that one before it might be something to ask your doctor about. There are YouTube videos that explain if you're interested.
I wish everyone good health.

Jump to this post

What the hey! I have never been offered any of these drugs or that procedure. At age 78, I guess my feeling that ablation no. 2 in 5 months is it got me (no more options), may be wrong. I keep asking for a picture of the rest of my life. but my doc only sees up to the upcoming surgery. Maybe this is it, and he’s just trying not to depress me?:) constant anxiety.. I’m making notes.

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