Am I overthinking this?

What am I missing

3+ years of persistent afib no symptoms on xarelto only without cardiologist referal to EP

Referal to EP with immediate cardioversion preceded by Flecainide 50mg x 2 and Metoprolol 25mg. Cardioversion successful and EP upped Flecainide and Metoprolol to 100mg x2 and Metoprollo 50mg x 1

Still in rhythm 1week later. At three week after consuming 44 ounces of caffeine (very naive and stupid) my blood pressure is high and I no longer have normal sinus rhythm. My EP raises my Flecainide to 150mg x2 and Metoprolol to 75mg. We discuss me wishing I was off the meds and he said only ablation could possibly accomplish that. Told him I want to think about it . He orders 30 day heart monitor and followup..

30 days later he says I am in NSR and had 2 incidents (I think they were panic attacks). I did cut back my everyday caffeine intake to 8 ounces a day. We discussed ablation again if I wanted off meds. I told him I did but was Considering Cleveland Clinic (most of family there). He said no problem but he recommended doing it and somewhere before heart changes much more.

I bought Kardia and according to readings I have been in NSR for 5 months with no symptoms. I am now scheduled for ablation and wondering if I really need it or if cardioversion would have stayed successful if I han’t been taking all that caffeime back then. Should I stop taking Flecaide and Metoprol and see if I lose my NSR or will Natale take me off my meds before surgery and if in NSR cancel the surgery?

Sorry, probably just being naive again and oversimplifying. Just keep thinking the cardioversion did work and maybe if I wan’t drinking minimum of 20+ ounces of caffeine (some days 40 or 50 if drank soda) I would not have slipped back out of NSR



Edited 1 time(s). Last edit at 07/08/2022 08:10AM by Geocappy.

Yes, Natale would stop your meds a few days prior to an ablation. No, he would not cancel if you remained in NSR.

I think you overrate caffeine's role here. I know everyone is convinced caffeine triggers afib but there's actually very little evidence that's true, and there's actually more evidence it's modestly helpful. Afib does what it wants. It starts and stops when it wants and searching for triggers is usually a futile exercise. I think it's a shame that cardiologist left you in afib for 3 years without even attempting to treat it. I would lose that guy.

I'm also surprised the cardioversion worked, but it did and now you've enjoyed 5 months of NSR. But I doubt that would last if you stopped the flecainide, and sooner or later you'll probably have to stop it. Afib is a progressive disease, so it's not going away. If I were you I would seek an ablation from the most experienced EP I could find. There's no rush, but I wouldn't put it off.

I concur with Carey. Here are some additional thoughts.

3 years of persistent afib is a long time for physical and electrical remodeling to likely have occured. Hence the boundary between NSR and afib is likely "thin."

The 150x2 flec obviously converted you and is holding you in NSR now. You could step your flec dose down and see if you continue to hold. The reason to step down slowly is you might find a minimum effective dose that is lower than what you are now taking. If you go out of rhythm, you could step back up to 150x2 flec and would likely convert back to NSR. Obviously this approach risks an episode, but you might learn something.

In your shoes, I would not want to continue the 150x2 for the rest of my life as it would likely not be efficacious forever and there is no "headroom" left in your dose to increase it.

I was on Flecainide for years with few Afib breakthroughs, but every time I did have one, my EP raised the dose of Flecainide until I was at 150 mg x 2. That proved to be a dose I could not tolerate and I developed a serious side effect. My EP stopped Flecainide and put me on Multaq last February. It worked pretty well but I have had a few breakthroughs. After the bad experience with Flecainide I decided on an ablation as all the antiarrythmics have side effects and eventually stop working. Natale accepted me and asked for a 7 day heart monitor. In order to increase the odds of picking some data, I stopped Multaq that week and indeed had several runs of Afib. My conclusion after years on antiarrythmics is that they are not a long-term solution, particularly with the side-effects. So, yes, I am going through with an ablation with Natale. In earlier years I had hoped to avoid it, but at this stage I have surrendered!

Yes, I don’t feel great on the flecainide and metoprolol (seem tired and slightly off balance). For me, I take other meds for diabetes, blood pressure cholesterol, blood thinner, not to mention cpap for sleep apnea, I just want to get off the heart medicine. It seems like my EP got from heart meds to max dose within 3 weeks ( 5 days prior to cardioversion to 3 weeks after cardioversion).

If there is a shot of getting a NSR without heart medicine I want to take it. I guess I am just second guessing due to all the caffeine I was taking daily back then. If I knew 100% that caffeine has no bearing as a trigger for afib then I would be 100% sure that ablation is my only option.

If you are having panic attacks, why not cut out the caffeine and see? If you are an adrenergic afibber like me, you are asking for trouble with any stimulants. But its your choice...

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Geocappy
If I knew 100% that caffeine has no bearing as a trigger for afib then I would be 100% sure that ablation is my only option.

Whether it does or not is irrelevant. You have to have the atrial substrate for afib for anything to trigger afib. You spent 3 years in longstanding persistent afib. There is absolutely no way that coffee caused that, not even a lot of coffee. You have without question the atrial substrate that supports afib, so triggers or not, it will be back.

The only things known to actually cause afib in people who don't have the atrial substrate are dehydration, electrolyte imbalances (especially potassium), heavy drinking, chest surgery, chest trauma, and heart valve problems.

You have been in NSR for 5 months?

Since your Asymptomatic, or little symptoms, rate control appears to not an issue, and you tolerate Eliquis if you need to take it, sounds there is absolutely no rush.

When you say "Persistent Afib for 3 years", can you be more descriptive? How many episodes? How long did they last, and did they require Cardioversion to get back into NSR? Also what was your average Heart Rate while in Afib?

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The Anti-Fib
Also what was your average Heart Rate while in Afib?

What is the significance of your average HR while in Afib? Years ago, before getting on antiarrythmics I would have RVR, but these days my rate is much lower, even if I have suspended my antiarrythmic for a week.

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The Anti-Fib
When you say "Persistent Afib for 3 years", can you be more descriptive? How many episodes?

If Geo is using the term correctly, and I assume they are, then there aren't episodes. It was non-stop afib for three years.

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Carey

When you say "Persistent Afib for 3 years", can you be more descriptive? How many episodes?

If Geo is using the term correctly, and I assume they are, then there aren't episodes. It was non-stop afib for three years.

Persistent Afib can be several Episodes in a year. What makes it "Persistent" is that it doesn't resolve on its own within about a week, and requires an intervention such as an Electrocardioversion to return to NSR. 3 years of solid Afib would be called Permanent Afib.

For example if I had 2 episodes in a year, and went and got Cardioverted at 36 hours on one episode, and 4 days on the 2nd episode, because I knew from prior history that the Afib would not go away on its own, then I would be classified as having "Persistent Afib" even though I was only in Afib for 5.5 days out of the year.

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The Anti-Fib
Persistent Afib can be several Episodes in a year. What makes it "Persistent" is that it doesn't resolve on its own within about a week, and requires an intervention such as an Electrocardioversion to return to NSR. 3 years of solid Afib would be called Permanent Afib.

For example if I had 2 episodes in a year, and went and got Cardioverted at 36 hours on one episode, and 4 days on the 2nd episode, because I knew from prior history that the Afib would not go away on its own, then I would be classified as having "Persistent Afib" even though I was only in Afib for 5.5 days out of the year.

I would disagree that Geo's would be permanent as the ECV worked, it just hadn't been tried for 3 years....

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GeorgeN

Persistent Afib can be several Episodes in a year. What makes it "Persistent" is that it doesn't resolve on its own within about a week, and requires an intervention such as an Electrocardioversion to return to NSR. 3 years of solid Afib would be called Permanent Afib.

For example if I had 2 episodes in a year, and went and got Cardioverted at 36 hours on one episode, and 4 days on the 2nd episode, because I knew from prior history that the Afib would not go away on its own, then I would be classified as having "Persistent Afib" even though I was only in Afib for 5.5 days out of the year.

I would disagree that Geo's would be permanent as the ECV worked, it just hadn't been tried for 3 years....

We don't know how much Geo was in Afib, but in general, if you went into an EP's office, and convinced him that you were in Afib constantly for 3 years he/she would probably call it "Permanent" After one year of constant Afib, the prevailing belief is that its too late to try and get Back to sustained NSR short of Ablation/Surgery.

There are accepted definitions for these terms and they're not ambiguous:

Paroxysmal afib = afib that lasts less than a week
Persistent afib = afib that lasts more than a week
Longstanding persistent afib = afib that lasts longer than a year
Permanent afib = afib that the patient decides to live with and not try to stop

No EP would call afib lasting 3 years permanent afib unless the patient said they're fine with that and didn't want to do anything more than rate control and anticoagulation. Permanent afib is a choice.

You can't call afib that comes and goes persistent no matter how often it comes and goes. That's simply not the definition.



Edited 1 time(s). Last edit at 07/08/2022 11:56PM by Carey.

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Carey
There are accepted definitions for these terms and they're not ambiguous:

Paroxysmal afib = afib that lasts less than a week
Persistent afib = afib that lasts more than a week
Longstanding persistent afib = afib that lasts longer than a year
Permanent afib = afib that the patient decides to live with and not try to stop

No EP would call afib lasting 3 years permanent afib unless the patient said they're fine with that and didn't want to do anything more than rate control and anticoagulation. Permanent afib is a choice.

You can't call afib that comes and goes persistent no matter how often it comes and goes. That's simply not the definition.

Do you care to post a source? or do you know so much of the top of your head? The term "Persistent" is not just a time reference, but whether or not a patient reverts back to NSR on their own, or needs intervention (Cardioversion).

"You can't call afib that comes and goes persistent no matter how often it comes and goes"
Who called it persistent? I asked Geo to clarify. You give advice based on your assumptions off the top of your head.



Edited 1 time(s). Last edit at 07/09/2022 12:35AM by The Anti-Fib.

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"3+ years of persistent afib no symptoms on xarelto only without cardiologist referal to EP

Referal to EP with immediate cardioversion preceded by Flecainide 50mg x 2 and Metoprolol 25mg. Cardioversion successful and EP upped Flecainide and Metoprolol to 100mg x2 and Metoprollo 50mg x 1

Being symptoms free and taking Xarelto sounds fine, if rate is under control.
I don't understand why this EP gave you flec, which is possibly dangerous (like all rhythm drugs)...

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The Anti-Fib
Do you care to post a source? or do you know so much of the top of your head? The term "Persistent" is not just a time reference, but whether or not a patient reverts back to NSR on their own, or needs intervention (Cardioversion).

"You can't call afib that comes and goes persistent no matter how often it comes and goes"
Who called it persistent? I asked Geo to clarify. You give advice based on your assumptions off the top of your head.

Yes, I know those definitions off the top of my head, but if you want a source then I recommend the HRS guidelines that define the terms. See Table 1.

GeoCappy called it persistent in the second sentence of the first post in this thread. When people use clinical terms here that appear to be used correctly I give them the benefit of the doubt that they are using them correctly. I don't think the advice I gave was very controversial and I doubt EPs would disagree with it. I mainly just answered the questions.

And, actually, if Geo changed the answer to say they had paroxysmal afib for 3 years instead of persistent, it wouldn't change my advice.



Edited 1 time(s). Last edit at 07/10/2022 01:35AM by Carey.

Actually, i am very naive on afib. All I know is I was diagnosed by primary and referred to cardiologist. Cardiologist did testing, said I had no immediate issues or symptoms so we would go on Xarelto and just monitor it with annual stress test and echogram. 3 years later she referred me to EP. During that time the only time I knew I had afib is when I went to primary or endrcrinologist they would say “you know you have afib” when examining me. I did not feel any other symptoms that I coul tell

Let me put it another way. I don’t think I would ever know I had it unless a doctor told me. And that is still the case. Except I don’t sleep as well, sometimes I have the feeling when I wake up during night that my heart is racing but I think it is anxiety from a lot of things or the medicine.



Edited 2 time(s). Last edit at 07/10/2022 09:05AM by Geocappy.

Maybe I described it wrong. All I know is my afib was discovered in a routine exam. Everytime i had an ekg or a doctor listened to heart they said i was in afib. I never had any symptoms that I could tell.



Edited 1 time(s). Last edit at 07/10/2022 08:21AM by Geocappy.

If you're in afib without symptoms and your average HR isn't too high, maybe have you other health issues you didn't mention ?

I have mentioned diabetes, sleep and sleep apnea. My blood pressure and cholesterol are controled with small amounts of medicine. What others are you thinking about. I thought I had enough. My whole concern (and Carey said caffeine is not cause) is I drank tons of caffeine 24-50 ounces a day before during and after diagnosis of afib. I also was never hydrated properly (played golf in hot Fl sun drinking water only when had to). Neither my cardiologist or EP mentioned them.

I had a cardioversion after 3 years of constant afib with no symptoms (only knew I had it because doctors told me when lidtening to heart, ekg, monitor, echogram. No drastic heart change. Cardioversion worked for 3 weeks on 100mg Flec and 50mg of metoprolol in spite of caffeine and lack of water intake. Then it didn’t when got ekg after high intake of caffeine. Blood pressure was real high that day. Then Flec increased to 150mg and met increased to 75mg. Since then my mobile kardia says I have been in NSR with HR of 68-74.

I was wondering why they suddenly decided to have you in NSR, since you were apparently fine despite being in afib for years.

It was a general cardiologist who left him in afib, which is something many of them are prone to do. When finally referred to an EP, the EP went to flecainide and cardioversion.

Good question. I am mad at my former Cardiologist. Although my EP said there has been disagreement in the field in the past when there are no symptoms as to whether to treat or not , I still think she should have explained my options. Not sure what made her refer me to the EP after 3 years, since I still had no symptoms and she said my heart was adequately pumping blood while no blood was pooling.

EP put me on 14 day monitor and then suggested cardioversion. I wish he would have said quit drinking anything with caffeine and make sure to drink lots of water.

Aside from the risk of surgery can someone comment on risks to heart (chances it will make heart worse, causing new arrythmias, etc)



Edited 2 time(s). Last edit at 07/10/2022 02:44PM by Geocappy.

Geo:

The fact that you have been in NSR for 5 months is a very positive sign. I suspect you were actually in and out somewhat of AFIB during the 3 years, but regardless, the 5 months is great news. To an extent, the negative structural effects of prolonged AFIB are reversed out by maintaining NSR for that long.

You mentioned getting off of the medications. Are you having side effects from the Metropolol? If it was me, at some point, If maintaining NSR, I would decrease that to 50mg on a trail basis. The other thing is that if you know for sure your in NSR, than if there are not not compounded health reasons, you may be able to get off of the Zarelto. In your case you probably dont know for sure your in NSR all of the time, but if someone knew for sure they were in NSR for 5 months, than Zarelto is not necessary for the AFIB, that is not even present. Obviously, someone should resume the Zarelto in AFIB returned.

You are right. My 5 months is only as good as my readings on my Mobile Kardia. And since I can’t do constant readings (not even daily) there is a chance I am not always in NSR.

My EP did have me on 30 day monitor after he ipped my dosage of Flec and Met. He said I was in NSR after 30 days but he still said if it were him he would still do ablation. Said that meds probably not work forever and my best shot at ablation when my heart hadn’t deteriorated too much.

I know Natale looked at my records and approved me. Although he is not aware that I have been in NSR for 5 months (of course needing max meds to do it).

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Daisy
I was on Flecainide for years with few Afib breakthroughs, but every time I did have one, my EP raised the dose of Flecainide until I was at 150 mg x 2. That proved to be a dose I could not tolerate and I developed a serious side effect. My EP stopped Flecainide and put me on Multaq last February. It worked pretty well but I have had a few breakthroughs. After the bad experience with Flecainide I decided on an ablation as all the antiarrythmics have side effects and eventually stop working. Natale accepted me and asked for a 7 day heart monitor. In order to increase the odds of picking some data, I stopped Multaq that week and indeed had several runs of Afib. My conclusion after years on antiarrythmics is that they are not a long-term solution, particularly with the side-effects. So, yes, I am going through with an ablation with Natale. In earlier years I had hoped to avoid it, but at this stage I have surrendered!

Daisy can I ask what the side effects were? feel free to PM me. I have a follow up to ablation appt in morning with EP and I am on a small amount of flec (QRS was high even with that so they did not increase). I am trying to figure out what some of my current issues are due to

thanks

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bettylou4488

Daisy can I ask what the side effects were? feel free to PM me. I have a follow up to ablation appt in morning with EP and I am on a small amount of flec (QRS was high even with that so they did not increase). I am trying to figure out what some of my current issues are due to

thanks

Flecainide gave me complete heart block and that has a host of awful symptoms—dizzy, short of breath, couldn’t stand up or walk. My Kardia said Wide QRS. Luckily I already had a pacemaker or I would have been in serious trouble.

Flecainide overdose dropped my hr to 24 for three days with repeated 1500ml urine dumps. I ended up in icu.

Since I too have a pacemaker, I can tolerate high doses of sotalol to maintain in nsr. I do get long QRS tho. I’m getting an echo in a week. Multaq was too weak for me to be effective.

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susan.d
Flecainide overdose dropped my hr to 24 for three days

Sounds like you also had complete heart block? My pacemaker interrogation showed a HR of about 20 when they separated out what my pacemaker was doing.

I had 2 ablations in a 6-month period. They weren't done by Dr. Natale, but another well respected EP. All I can tell you is I wish I hadn't had them. Best of luck to you!

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jasams
I had 2 ablations in a 6-month period. They weren't done by Dr. Natale, but another well respected EP. All I can tell you is I wish I hadn't had them. Best of luck to you!

Could you please tell us why you regret having them? Did they not resolve your Afib, did you have side-effects that affected your quality of life or anything else you could tell us?

You are correct. They did not resolve my afib, all ablations take a toll on your heart — you are after all burning heart tissue — and I took the risk of possible complications. Hindsight is 20-20, but if I could go back in time I would not have had the ablations.



Edited 1 time(s). Last edit at 07/14/2022 03:35PM by jasams.

What was your condition before the ablations? Did you have persistent afib? How long did you have afib? What were symptoms? Were you on heart meds? What kind? How long ago did you have the ablations?