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Ok I am doing it
Posted by Geocappy
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Ok I am doing it July 18, 2022 10:33AM |
Registered: 2 years ago Posts: 111 |
I am scheduled for ablation 8/9. Facetime with Dr Natale 7/22. I spoke with my assigned nurse and told her about my concern about my previous abuse of 24-60 ounces of caffeine a day (not counting chocolate) playing a role in my afib yet my cardiologist nor EP ever suggested cutting back after afib diagnosis. Told her how I continued my caffeine habit including approx 50 ounces I had the morning I was going in for 12:45 followup visit two weeks after a successful cardioversion. Told my nurse My ekg showed I was back in afib with my BP at 150/ 85, and high heart rate. EP nor I discussed caffeine use that day.
Told nurse my EP raised my Flecainide from 50mgx2 for the cardioversion to 100mgx2 after cardioversion to 150mgx2 in his office that day. Also raised Metoprolol to 25mg, 50mg, and 75 mg respectively. He also discussed ablation. I immediately cut caffeine to less than 8 ounces a day and taking 400 mg of magnesium per day
30 day monitor, and approx 3.5months more of kardia mobile and no readings of afib. All NSR with heart rate 67-73. I just wondered what if I wasn’t abusing caffeine all those years and especially after cardioversion?
As many have told me here and my nurse said Dr Natale would stop Flecainide and Metoprololapprox week prior to procedure but if I wanted to stop Flec now and wean off Met now to see what would happen ( w/o caffeine intake) it wouldn’t be problem (I will monitor HR)
I immediately cut Flec to 75mg x2 ( less than caffeine abused day in EP’s office). Now on 3rd day and cut Met to 50mg yesterday. Kardia mobile still reading NSR with HR of 70-73 and BP 120/ 72.
Not sure what any of it would mean if I stop Flec and Metoprolol 20 days prior to ablation and I stay in NSR with normal HR? Not even sure if or how I should discuss this with Dr Natale during our facetime appointment. Is it too late to worry about and would it mean anything. I feel like I have been very naive thru this whole 3+ year ordeal with limited help from my cardiologist or local EP
Edited 4 time(s). Last edit at 07/18/2022 12:20PM by Geocappy.
Told nurse my EP raised my Flecainide from 50mgx2 for the cardioversion to 100mgx2 after cardioversion to 150mgx2 in his office that day. Also raised Metoprolol to 25mg, 50mg, and 75 mg respectively. He also discussed ablation. I immediately cut caffeine to less than 8 ounces a day and taking 400 mg of magnesium per day
30 day monitor, and approx 3.5months more of kardia mobile and no readings of afib. All NSR with heart rate 67-73. I just wondered what if I wasn’t abusing caffeine all those years and especially after cardioversion?
As many have told me here and my nurse said Dr Natale would stop Flecainide and Metoprololapprox week prior to procedure but if I wanted to stop Flec now and wean off Met now to see what would happen ( w/o caffeine intake) it wouldn’t be problem (I will monitor HR)
I immediately cut Flec to 75mg x2 ( less than caffeine abused day in EP’s office). Now on 3rd day and cut Met to 50mg yesterday. Kardia mobile still reading NSR with HR of 70-73 and BP 120/ 72.
Not sure what any of it would mean if I stop Flec and Metoprolol 20 days prior to ablation and I stay in NSR with normal HR? Not even sure if or how I should discuss this with Dr Natale during our facetime appointment. Is it too late to worry about and would it mean anything. I feel like I have been very naive thru this whole 3+ year ordeal with limited help from my cardiologist or local EP
Edited 4 time(s). Last edit at 07/18/2022 12:20PM by Geocappy.
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Re: Ok I am doing it July 19, 2022 06:34PM |
Registered: 9 years ago Posts: 1,085 |
You could completely cut out the Caffeine, and limit Chocolate. Also continue to taper down on the Metropolol to 25mg, and Flecainide also. If you completely get off the Flecainide, then Metropolol can also be discontinued. See what happens. Postpone your Ablation. Sounds like your always going to be wandering about the caffeine if you don't have a good trial without it. You can always restart your higher medication regimen if need be, so no urgency whatsoever to Ablate. The people always recommending Ablation on this site are the ones who failed to manage their own Afib, thus they tend to be more pessimistic about Afib prognosis.
In your case, when you do have Afib, it's low heart rate Asymptomatic Afib. Also, you have had solid NSR success for the last 6 months. All this makes waiting a viable option. If you go back into persistent Afib, then you will have little doubt in your mind about getting the Ablation at that point.
In your case, when you do have Afib, it's low heart rate Asymptomatic Afib. Also, you have had solid NSR success for the last 6 months. All this makes waiting a viable option. If you go back into persistent Afib, then you will have little doubt in your mind about getting the Ablation at that point.
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Re: Ok I am doing it July 19, 2022 07:22PM |
Admin Registered: 6 years ago Posts: 5,338 |
Quote
The Anti-Fib
The people always recommending Ablation on this site are the ones who failed to manage their own Afib, thus they tend to be more pessimistic about Afib prognosis.
Failed to manage their own afib? Seriously? That's really unfair to a lot of people; you're patient blaming. If you think afib comes in one flavor and it's always manageable, you're very wrong, particularly when we're talking about persistent afib. How many afib patients are you familiar with the details of their history? Between Shannon and I we know hundreds, and there's actually not much variation between them. There are a small number of outliers who have found novel ways to manage their afib, and they enjoy some degree of success, but not one single person I've ever known or heard about has achieved complete afib control without drugs or ablation. Combine that with the many, many studies showing that afib is a relentlessly progressive disease, and we're talking thousands of patients. So if I'm pessimistic about the prognosis for untreated afib, that pessimism is well founded in the data. Personally, I spent 15 years trying to find a way to control my afib, including almost every method discussed on this and other forums over the years, and not one single approach ever made the slightest difference. The only thing that ever worked for me was antiarrhythmic drugs, and each and every one of them sucked in one way or another. So my "failure" to manage my afib is my fault? I think not.
As for Geo, you don't go through 3 years of longstanding persistent afib and then just magically not have afib anymore by doing things like stopping chocolate and caffeine. Caffeine and chocolate don't cause afib. Without drugs or an ablation, persistent afib isn't going to stop, and AADs are almost never a good long-term solution. They all stop working eventually or turn on you and become pro-arrhythmic, and then all you've accomplished is allowing the atrial remodeling to continue, making afib a certainty and ablation even more difficult.
Atrial remodeling is why it pays to stop ablation as soon as possible. That's why I will sometimes recommend ablation for someone even though they're relatively asymptomatic, not because of my pessimism.
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Re: Ok I am doing it July 19, 2022 08:38PM |
Registered: 10 years ago Posts: 2,515 |
Geo could wait until he gets on Natale’s Pulse trial which is safer because it uses no heat. If I was a Monday morning quarterback with a crystal ball I would had waited two years because my symptoms were so mild. So ridiculously mild. 67-80 hr.
I think Geo needs an ablation but wait for Natale to put him in the pulse trial. Or better yet call Austin now and fast track the application for the pulse trial admissions. Someone recently posted his success pulse experience and commented on the safety.
I think Geo needs an ablation but wait for Natale to put him in the pulse trial. Or better yet call Austin now and fast track the application for the pulse trial admissions. Someone recently posted his success pulse experience and commented on the safety.
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Re: Ok I am doing it July 20, 2022 12:32AM |
Registered: 9 years ago Posts: 1,085 |
Quote
Carey
The people always recommending Ablation on this site are the ones who failed to manage their own Afib, thus they tend to be more pessimistic about Afib prognosis.
Failed to manage their own afib? Seriously? That's really unfair to a lot of people; you're patient blaming. If you think afib comes in one flavor and it's always manageable, you're very wrong, particularly when we're talking about persistent afib. How many afib patients are you familiar with the details of their history? Between Shannon and I we know hundreds, and there's actually not much variation between them. There are a small number of outliers who have found novel ways to manage their afib, and they enjoy some degree of success, but not one single person I've ever known or heard about has achieved complete afib control without drugs or ablation. Combine that with the many, many studies showing that afib is a relentlessly progressive disease, and we're talking thousands of patients. So if I'm pessimistic about the prognosis for untreated afib, that pessimism is well founded in the data. Personally, I spent 15 years trying to find a way to control my afib, including almost every method discussed on this and other forums over the years, and not one single approach ever made the slightest difference. The only thing that ever worked for me was antiarrhythmic drugs, and each and every one of them sucked in one way or another. So my "failure" to manage my afib is my fault? I think not.
As for Geo, you don't go through 3 years of longstanding persistent afib and then just magically not have afib anymore by doing things like stopping chocolate and caffeine. Caffeine and chocolate don't cause afib. Without drugs or an ablation, persistent afib isn't going to stop, and AADs are almost never a good long-term solution. They all stop working eventually or turn on you and become pro-arrhythmic, and then all you've accomplished is allowing the atrial remodeling to continue, making afib a certainty and ablation even more difficult.
Atrial remodeling is why it pays to stop ablation as soon as possible. That's why I will sometimes recommend ablation for someone even though they're relatively asymptomatic, not because of my pessimism.
The comment wasn't specifically directed at you Carey, I have read most all of the posts on this site for the last 12years.
As for the remodeling, Geo has had around 6 months of NSR, and reverse remodeling occurs with sustained NSR. (Shannon himself has said approximately up to 50% reverse remodeling can occur.) Also you appear not give any credence that Geo thinks the excess Caffeine was causing the Afib. He keeps bringing it up. He can afford to give it a trial if he so chooses, to put his mind at rest.
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Re: Ok I am doing it July 20, 2022 12:48AM |
Admin Registered: 6 years ago Posts: 5,338 |
I didn't think your post was aimed at me. I just thought it was pretty harsh on the people here who haven't been able to manage their afib without drugs or ablation, which is the vast majority of them.
If Geo wants to test his caffeine theory I say go right ahead, and I've told him that in private. I think blaming 3 years of persistent afib on caffeine is wishful thinking, so you're right that I don't give much credence to it. I hope I have to eat my words, but I doubt I will.
If Geo wants to test his caffeine theory I say go right ahead, and I've told him that in private. I think blaming 3 years of persistent afib on caffeine is wishful thinking, so you're right that I don't give much credence to it. I hope I have to eat my words, but I doubt I will.
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Re: Ok I am doing it July 20, 2022 08:05AM |
Registered: 2 years ago Posts: 111 |
Thanks for all the discussion. I have cut my Flec from 150mg x2. I have done 3 days at 75mg x2 and have now done 2 days at 75m. I know I could of just gone on all at once but I didn’t. I have cut my Metoprolol from 75mg to 50mg.
So far my kardia still says NSR but the lines do not look as smooth to me ( could be my imagination. HR has gone from 67-70 up to 78-82. Blood Pressure is about the same.
Scheduled to speak with Natale on Friday. Not sure what or what not to speak to him about. Do I bring up how I have had this concern? I have been called about the pulse trial that Natale is part. If I consent there is a 50/50 chance due to randomization that I would get the pulse catheter. I would not know if I got it and would have to participate in followup for up to 5yrs if necessary. Also, go back to Austin for several checkups(30 days) and possible 3,6,9 months.
Not sure about trial as they did not discuss who pays for all the fly backs to Austin.
So far my kardia still says NSR but the lines do not look as smooth to me ( could be my imagination. HR has gone from 67-70 up to 78-82. Blood Pressure is about the same.
Scheduled to speak with Natale on Friday. Not sure what or what not to speak to him about. Do I bring up how I have had this concern? I have been called about the pulse trial that Natale is part. If I consent there is a 50/50 chance due to randomization that I would get the pulse catheter. I would not know if I got it and would have to participate in followup for up to 5yrs if necessary. Also, go back to Austin for several checkups(30 days) and possible 3,6,9 months.
Not sure about trial as they did not discuss who pays for all the fly backs to Austin.
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Re: Ok I am doing it July 20, 2022 08:42AM |
Registered: 11 years ago Posts: 4,222 |
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Re: Ok I am doing it July 20, 2022 10:17AM |
Registered: 2 years ago Posts: 111 |
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Re: Ok I am doing it July 20, 2022 10:34AM |
Registered: 6 years ago Posts: 920 |
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Re: Ok I am doing it July 20, 2022 12:28PM |
Registered: 4 years ago Posts: 725 |
Quote
Carey
AADs are almost never a good long-term solution. They all stop working eventually or turn on you and become pro-arrhythmic
Meds becoming pro-arrhythmic is something to consider. I am suspicious of my own history with Flecainide and wonder if it is the med most likely to turn on you? I took it for about 5 years, starting at 50 mg x 2. Over the years I would get break-through Afib and my EP would up the dose. It seemed like the higher the dose, the more break-throughs. My history with Flecainide ended when 150 mg x 2 gave me complete heart block. Then my EP prescribed Multaq, which for most patients seems to be much less efficacious than Flecainide. I am amazed that in the 5 months I've been taking it, I have had almost no break-through Afib, which makes me wonder if it wasn't so much that my illness was progressing but rather that Flecainide was turning pro-arrhythmic and causing the break-throughs? In any case, at this point (after 12 years) I am on the list for a Natale ablation.
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Re: Ok I am doing it July 20, 2022 02:11PM |
Registered: 1 year ago Posts: 30 |
“ The people always recommending Ablation on this site are the ones who failed to manage their own Afib, thus they tend to be more pessimistic about Afib prognosis”.
As someone who comes from a family with AFib , father, aunts, uncles, cousins and most of my siblings, I can tell you we’ve all tried to “manage” it as best we can. Several are athletes and most of us exercise regularly, none are obese, none have diabetes or other illness, the worst case brother has been a vegetarian for 30 years ( eats some fish) some have given up caffeine and alcohol entirely, yet even after meds and ablation the Afib persists to some degree in each one of us. I’ve concluded that we must have defective hearts.
As someone who comes from a family with AFib , father, aunts, uncles, cousins and most of my siblings, I can tell you we’ve all tried to “manage” it as best we can. Several are athletes and most of us exercise regularly, none are obese, none have diabetes or other illness, the worst case brother has been a vegetarian for 30 years ( eats some fish) some have given up caffeine and alcohol entirely, yet even after meds and ablation the Afib persists to some degree in each one of us. I’ve concluded that we must have defective hearts.
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Re: Ok I am doing it July 20, 2022 06:07PM |
Admin Registered: 6 years ago Posts: 5,338 |
Quote
Geocappy
Probably. What happens when I stop the Metoprol completely?
Your resting heart rate will rise a little more, your BP may rise a little also, and you'll probably have more energy. Metoprolol causes some degree of fatigue in most people, with some people (like me) experiencing severe fatigue from it.
Eventually your heart rate and BP will probably come back down to your normal baseline levels as your body stops making more adrenaline to compensate for the beta blocker.
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Re: Ok I am doing it July 21, 2022 07:17AM |
Registered: 2 years ago Posts: 111 |
My blood pressure going up does concern me some. I was on Olmesartan as a BP med (10mg/day) originally. I was put on it 5+ years ago I was told to protect my kidneys while they attempted to get my Blood sugar under control from years of neglect. Prior to 5 years ago I hadn’t seen a doctor much and thought iI was relatively healthy except I knew I was ignoring my sleep apnea. Unfortunately, it all caught up to me. Sleep apnea, diabetes with initial A1c of 12 (now 5.8-6.1 with meds), and of course my afib.
Back to BP. I was taking Olmesartan 10mg) supposedly for kidney protection. Then put on Flec and Metoprolol. Started having excessive nightly urination so given Doxazosin (4mg/day). At that point I realized I Olmesartan, Metoprolol, and Doxazosin were all BP although I was using them fo different reasons. I stopped the Olmesartan and my BP has been below 120 except when waking from sleep/dream middle of night can be 130-140 for short time.
Anyway, weaning off Metoprolol does concern me. I guess adding back the Omesartan probably makes sense???
Back to BP. I was taking Olmesartan 10mg) supposedly for kidney protection. Then put on Flec and Metoprolol. Started having excessive nightly urination so given Doxazosin (4mg/day). At that point I realized I Olmesartan, Metoprolol, and Doxazosin were all BP although I was using them fo different reasons. I stopped the Olmesartan and my BP has been below 120 except when waking from sleep/dream middle of night can be 130-140 for short time.
Anyway, weaning off Metoprolol does concern me. I guess adding back the Omesartan probably makes sense???
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Re: Ok I am doing it July 21, 2022 06:09PM |
Admin Registered: 6 years ago Posts: 5,338 |
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Re: Ok I am doing it July 21, 2022 10:56PM |
Registered: 9 years ago Posts: 1,085 |
Geo: "Scheduled to speak with Natale on Friday. Not sure what or what not to speak to him about. Do I bring up how I have had this concern?"
I would write down a list of things you want to go over, prioritizing it with the most important being first. Ask what your concerns are. I'm not sure what "concern" you are referring to, certainly you could ask about the follow-up regimen, or your experience with Caffeine, and now being in NSR for 6 months. Ask him what you want, it's your appointment and heart.
Edited 1 time(s). Last edit at 07/21/2022 11:05PM by The Anti-Fib.
I would write down a list of things you want to go over, prioritizing it with the most important being first. Ask what your concerns are. I'm not sure what "concern" you are referring to, certainly you could ask about the follow-up regimen, or your experience with Caffeine, and now being in NSR for 6 months. Ask him what you want, it's your appointment and heart.
Edited 1 time(s). Last edit at 07/21/2022 11:05PM by The Anti-Fib.
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Re: Ok I am doing it July 22, 2022 04:55AM |
Registered: 12 years ago Posts: 247 |
I strongly agree with Carey’s comments.
I believe my AF started very early in life, as I suffered racing heart and brief blackouts occasionally as a teen, then a few in my twenties and more in my thirties and forties. I eventually did some research and believed I had found the answer. AF. My GP at the time believed I was suffering panic attacks and refused to refer me to a Cardiologist until I’d tried some anti anxiety drugs. I took the script, never filled it out, went back to him some months later, and got a referral to a Cardiologist..
Unfortunately, not helpful, on my monthly visits, he would take my BP, listen to my heart and say I was in sinus. He would tell me to have a glass of wine and go to bed when I got an episode.
I’m a vegetarian fit and reasonably healthy and I was was trying all of the natural ways to stop the episodes and it seemed to work for a bit. However the events got more frequent and harder to bear .I had a young family and was worried about dying. Fear begets fear. I had read about a procedure called ablation so I decided get an appointment in one of the larger hospitals in my state, and while the guy did listen to me, I could see he really wasn’t interested, and was told my age and my gender were obstacles. He did suggest I try a new medication and my first blood thinner. Was I lucky not to have suffered a stroke over all those years?I think so. Over the next couple of decades I kept fit, ate well and supplemented. But still I had regular episodes of chaotic AF. At work, out dining, while sleeping, anywhere anytime. I stopped going to hospital and tried to manage my self. Didn’t work.
Then around 4 years ago researched and eventually was referred to an EP. He is simply the best. I’ve said this before on this site and I’ll reiterate, ablation changed my life. I’ve had my second one this month plus a couple of Cardioversions. I’m a very reluctant and nervous patient, but so glad I’ve done the procedures.
By all means try the natural way, but know when it’s time to seek professional care.
I believe my AF started very early in life, as I suffered racing heart and brief blackouts occasionally as a teen, then a few in my twenties and more in my thirties and forties. I eventually did some research and believed I had found the answer. AF. My GP at the time believed I was suffering panic attacks and refused to refer me to a Cardiologist until I’d tried some anti anxiety drugs. I took the script, never filled it out, went back to him some months later, and got a referral to a Cardiologist..
Unfortunately, not helpful, on my monthly visits, he would take my BP, listen to my heart and say I was in sinus. He would tell me to have a glass of wine and go to bed when I got an episode.
I’m a vegetarian fit and reasonably healthy and I was was trying all of the natural ways to stop the episodes and it seemed to work for a bit. However the events got more frequent and harder to bear .I had a young family and was worried about dying. Fear begets fear. I had read about a procedure called ablation so I decided get an appointment in one of the larger hospitals in my state, and while the guy did listen to me, I could see he really wasn’t interested, and was told my age and my gender were obstacles. He did suggest I try a new medication and my first blood thinner. Was I lucky not to have suffered a stroke over all those years?I think so. Over the next couple of decades I kept fit, ate well and supplemented. But still I had regular episodes of chaotic AF. At work, out dining, while sleeping, anywhere anytime. I stopped going to hospital and tried to manage my self. Didn’t work.
Then around 4 years ago researched and eventually was referred to an EP. He is simply the best. I’ve said this before on this site and I’ll reiterate, ablation changed my life. I’ve had my second one this month plus a couple of Cardioversions. I’m a very reluctant and nervous patient, but so glad I’ve done the procedures.
By all means try the natural way, but know when it’s time to seek professional care.
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Re: Ok I am doing it July 24, 2022 04:49PM |
Registered: 5 years ago Posts: 38 |
JoyWin - So many of your comments reminds me of my own journey.! But I am wondering what issues you were having that required a second ablation and the cardioversions? Talk about nervous patient...I feel I'm the queen!! I'm terrified to get my first let alone a second! My EP is staying on top of my progression and says I'm not there "yet". I've dodged the cardioversions because my affib converted within a few hrs. I was on Flec & Metop for daily & nightly PVCs until 4 weeks ago then my EP wanted me to come off both to see what happens since the meds were not helping. Felt like Flec had weakened or stopped working. As bad as ectopics were on the meds, they are actually getting worse. Just not enough burden to get me a PVC abalation. I have EP & cardiologist appts in two weeks. I guess I'll be back to more meds since there is nothing else they can do. I'm nervous about what meds they'll try next! I wish there was a magic pill!
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