New to Afib - what should I ask my EP?

I was diagnosed with afib in May, but have found this incredibly helpful forum only recently. I had become frustrated with the pace of my research until finding this forum (thank you SoCalSteve). I can’t thank you all enough for sharing what you know about afib.

Some background: I am 50 and am not sure if my afib is vagal or adergenic, but suspect a mix. My blood pressure is normal (less than 120/80) and I don’t have sleep apnea. I was 5’ 8” and 185 pounds with a pod-measured body fat percentage of 20% at diagnosis. I was generally viewed as the healthy guy among my friends, although I had already begun some testing with a functional medicine doc that suggested areas for improvement (elevated homocysteine and a really bad omega 3 to omega 6 ratio). I have been a cyclist for 30 years, though I didn’t become serious until 10 years ago at which time I started to ride 2,500-3,500 miles per year, although roughly half of that was at extremely low intensity as I was aware of the connection between endurance exercise and afib. I would say work stress for the past two years has been a 9 on a scale of 1-10.

After diagnosis, I began taking 50 mg of metoprolol per day. This did nothing to address my daily 1-4 hour episodes, so after six weeks my cardiologist prescribed 25 mg of Flecainide twice daily. That helped for about 18 hours and then I reverted to daily episodes. After becoming frustrated with my cardiologist’s lack of urgency, I sought out an EP and found one who is a runner, so somewhat more understanding of my desire to resume athletic activities eventually. She immediately doubled my Flec prescription and again I had some relief briefly before reverting back to my pattern. While the Flecainide and Metoprolol did not seem to minimize the number of episodes I was having, they certainly reduced the magnitude of the HR spikes. When I went to the ER in May, my HR would spike to 155 bpm while on the drugs it generally peaks at 120.

Frustrated with my lack of progress, I decided almost 4 weeks ago to completely eliminate alcohol (which was already low at ~4 drinks per week) and to adhere to a much stricter version of the paleo-ish diet that I’ve followed off and on for 10 years. My hope was to reduce inflammation and lose some weight. After about five days, I began to feel like my old self for the first time since before my diagnosis and started stringing together days without any afib episodes. Note I am still taking the Flec and Metoprolol. Last week I forgot to take my morning dose one day and made it until the evening with no problems before I started feeling an episode coming on around dinner time. A couple hours after taking my evening dose, I again felt normal and my HR settled in at my current resting rate of 58-62. I have been supplementing magnesium (Natural Vitality) regularly since a couple of months before my afib diagnosis at my functional medicine doc’s recommendation, and I have gradually increased it as my tolerance allowed and am now at around 500-600 mg per day. A few days ago I began adding 2 grams of taurine per day as well. My “shotgun” approach makes it hard to isolate what has worked, but my instinct is the elimination of alcohol has been the key difference.

While things are better, I hate taking the meds (especially the Metoprolol) and, in any event, they interfere significantly with many of my desired activities (I’ve already decided to virtually eliminate regular endurance exercise, however, and am not seeking a return to that level of activity). Longer term I would like to wean myself from the meds, if possible, though I realize that might require an ablation (Dr. Natale is covered by my health insurer, FWIW). My cardiologist was dismissive of ever addressing my condition through lifestyle changes. My EP was less dismissive, but not overly hopeful. Neither has offered a theory as to what caused my afib. I have an appointment tomorrow with my EP to discuss the results of a recent echocardiogram. The preliminary report was that everything seems normal. I would like to use my time with her wisely. If you were in my shoes, what would you folks ask her?

[getinrhythm.com]
Listen to the experts and you'll have many pertinent questions to ask your specialist at your next consult.

I listened to all 21/2 days of it and found it excellent (maybe i'm a bit nerdy?). One aspect that wasn't covered is genetics, bio-chemical individuality and how to optimize our macro nutrient mix intake and heightened requirements for other nutrients and minerals/balances.
However, i do realize it's too much to ask in 21/2 days.
[www.stopafib.org]



Edited 1 time(s). Last edit at 08/27/2018 08:23PM by Joe.

Welcome to the club nobody wants to join, Mike! From what you describe, you’re in fine shape. The proverbial hole in the sky has opened up and disseminated its blessings upon you, as it has many of us. Don’t beat yourself up. Glad to hear you’ve got an EP. Take advantage of youth and think about ablation options. The key questions to ask are 1) How many complex, left-atrial ablation have you done and 2) how many are successful, meaning total freedom from arrhythmia for one year or longer without continued use of drugs.

Quote
Joe
[getinrhythm.com]
Listen to the experts and you'll have many pertinent questions to ask your specialist at your next consult.

I listened to all 21/2 days of it and found it excellent (maybe i'm a bit nerdy?). One aspect that wasn't covered is genetics, bio-chemical individuality and how to optimize our macro nutrient mix intake and heightened requirements for other nutrients and minerals/balances.
However, i do realize it's too much to ask in 21/2 days.
[www.stopafib.org]

Lots of great info there. Thanks for the links.

Quote
wolfpack
Don’t beat yourself up...The key questions to ask are 1) How many complex, left-atrial ablation have you done and 2) how many are successful, meaning total freedom from arrhythmia for one year or longer without continued use of drugs.

I did beat myself up a little at first. I would imagine it's pretty common initially. At this point, I'm focused on educating myself as well as I can so that I'm prepared when I deal with my medical professionals.

Great advice on the questions - I might have neglected to ask the second one in particular. Having said that, if I go the ablation route I will definitely explore whether Dr. Natale is an option for me.

Thank you for the advice.

Brief update: because of my recent improvement, we're going to try to cut my Flecainide in half to see what happens. My EP believes that eventually I will need an ablation, however, because I have atrial flutter which tends not to go away once the circuit is in place. One option is a flutter ablation (relatively risk, very high likelihood of success). If Afib returns at that point, my options would be either Flecainide alone or a second ablation to address it.

Your EP is correct. A right-sided CTI flutter ablation is low risk and carries a high probably of success. However, if a left-sided AF ablation is in the cards you might consider combining the procedures rather than doing it twice. An experienced EP should be able to do this.

Doing both at once seems most sensible. I think she was being thorough in laying out the options and perhaps reacting to my less than enthusiastic response to ablation in general. For whatever reason, it's taking me awhile to get comfortable with the idea although all signs are pointing in the direction of an ablation and, if all goes well, that does give me the best chance for a good outcome.

Quote
MikeShue
Doing both at once seems most sensible. I think she was being thorough in laying out the options and perhaps reacting to my less than enthusiastic response to ablation in general. For whatever reason, it's taking me awhile to get comfortable with the idea although all signs are pointing in the direction of an ablation and, if all goes well, that does give me the best chance for a good outcome.

I’ll say it again...best thing I ever had done was my ablation 7 and a half years ago. I’ve been living my life without drugs, drinking caffeine, an alcoholic drink on occasion. I’m 9 weeks out for my next one. I can’t wait!

And Mike, happy you made your way to this forum. It’s a great resource for all things Afib.

I had my first afib episode nearly three years ago. I had flutter too. My first EP was for a careful approach, proposing to ablate firstly for the right flutter, for the good reasons explained by previous posters.
Had I known what I know now, I would have refused.
As soon as the catheter got inside my heart, afib kicked in.



Edited 1 time(s). Last edit at 08/29/2018 10:51AM by Pompon.

I had my first afib episode nearly three years ago. I had flutter too. My first EP was for a careful approach, proposing to ablate firstly for the right flutter, for the good reasons explained by previous posters.
Had I known what I know now, I would have refused.
As soon as the catheter got inside my heart, afib kicked in. They tried an ECV, but without success. They were even not sure having successfully ablated for flutter. I awoke in afib and self converted the next morning. I was furious because of the result and because some of my ribs were painful.
I don't say flutter ablation alone is not to do, but this would only prevent for right flutter. Afib would likely come back. Of course, afib is said being easier to treat with medication than flutter, but when one knows the efficiency of AA drugs, it says long...

Quote
Pompon
I had my first afib episode nearly three years ago. I had flutter too. My first EP was for a careful approach, proposing to ablate firstly for the right flutter, for the good reasons explained by previous posters.
Had I known what I know now, I would have refused.
As soon as the catheter got inside my heart, afib kicked on.

I'm sorry to hear that, Pompon. Are you saying that, in retrospect, you wish you'd avoided ablation of any kind or that you wish you'd ablated both the flutter and the afib at the same time?

Yes. Both at the same time.

They try to get me back in NSR with an ECV, but they failed. They were not even sure flutter ablation was rightly achieved. I awoke in afib and self converted the next morning at six. Some of my ribs were painful because of the repeated electric shocks.
The flutter ablation got re-done six months later, with my PVI procedure.

I’m new to this “club” as well. I was diagnosed with AFib last May. My cardiologist gave me a prescription for Metoprolol 25mg, and for a blood thinner called Eliquis. I researched Eliquis, and found a black box warning saying that Eliquis should not be used by anyone with a history of spinal deformity or spinal surgery. I took this information to my pharmacist for an explanation because I have had 2 spinal surgeries and I have scoliosis. He looked up information on all the anticoagulants, and they all say the same thing. He said if I were to develop a blood clot while on blood thinners, it would be on my spine and possibly cause paralysis.

So, I am not taking blood thinners. However I am taking 2 baby aspirins, eating healthy, and taking supplements with blood thinning properties, hoping I can avoid a stroke.

Can anyone give me advice as I don’t know what to do next.

Aspirin is also used when you have medical devices, due to anti-platelet properties. It hasn't shown effectiveness, however, for afib. Have you considered options like ablation for treating your afib? (Check with Jackie on supplements).



Edited 2 time(s). Last edit at 09/03/2018 10:10AM by jpeters.

Hello Lindy and welcome.

On the clot risk topic... there are several posts on effective, natural blood thinners.... most recently, the one on
Lumbrokinase... a fibrinolytic enzyme that isn't soy-based. Here's the link and at the end, there are other links to
previous reports on natural thinners... and also important, the testing that can be done to document your risk of
hyperviscous blood... so you can manage those markers as well.

Lumbrokinase
[www.afibbers.org]

Then scroll down to these titles that are hyperlinked.


Viscosity Risk Factors

Silent Inflammation

Sticky, thick blood - Risk of Stroke and MI

Clot Risk

Jackie

Quote
Lindy
I took this information to my pharmacist for an explanation because I have had 2 spinal surgeries and I have scoliosis. He looked up information on all the anticoagulants, and they all say the same thing. He said if I were to develop a blood clot while on blood thinners, it would be on my spine and possibly cause paralysis.

So, I am not taking blood thinners. However I am taking 2 baby aspirins, eating healthy, and taking supplements with blood thinning properties, hoping I can avoid a stroke.

Either you misunderstood your pharmacist or they provided a very poor explanation. Unless your spinal surgery was very recent you're in no danger from anticoagulants. Scoliosis also presents no additional risk. But you are in danger from lack of taking an anticoagulant.

Aspirin presents exactly the same risk to you that anticoagulants would, if not more so, and it's also ineffective at preventing strokes related to afib. "Natural" blood thinners would also present the same risk.

In short, you can't have your cake and eat it too. Either you take an anticoagulant to prevent the #1 threat to you -- stroke -- or you don't. Choosing aspirin or natural approaches that are all less effective at accomplishing the objective and yet carry the same risks makes no sense at all.

Fact: Strokes due to afib kill and maim people daily, and strokes due to afib tend to be much more devastating than those from other causes. Bleeding, on the other hand, rarely kills or harms anyone.

Thank you for your response. I attended an AFib Patient conference in Dallas, TX last month. There were several doctors that were the best in their field of medicine—AFib. After 3 days of listening to these doctors, I spoke with Dr. Randall Wolf, who invented the Wolf Mini-Maze procedure, which eliminates the need for blood thinners. Hopefully, I will be a good candidate for this procedure. I am in the process of getting my reports to him.

In the meantime, I am taking several natural blood thinners including Nattokinase.

Carey, I read that information in the black box warning on the information sheet that came with Eliquis. My back surgery was 2 years ago—I had a lumbar 3 level fusion. My gut instincts tell me not to take the Eliquis, even though I have it.

Quote
Lindy
Thank you for your response. I attended an AFib Patient conference in Dallas, TX last month. There were several doctors that were the best in their field of medicine—AFib. After 3 days of listening to these doctors, I spoke with Dr. Randall Wolf, who invented the Wolf Mini-Maze procedure, which eliminates the need for blood thinners. Hopefully, I will be a good candidate for this procedure. I am in the process of getting my reports to him.

In the meantime, I am taking several natural blood thinners including Nattokinase.

Interesting. Curious how you arrived at the decision to go for the mini-maze vs something simpler. Thanks.

Quote
Lindy
Carey, I read that information in the black box warning on the information sheet that came with Eliquis. My back surgery was 2 years ago—I had a lumbar 3 level fusion. My gut instincts tell me not to take the Eliquis, even though I have it.

I think you're misunderstanding the black box warning and taking the aspirin is actually a greater risk, but obviously it's your choice.

Lindy:

The following is taken from the black box, it does say if "you have a history of difficult or repeated epidural or spinal punctures"

Spinal or epidural blood clots (hematoma). People who take ELIQUIS, and have medicine injected into their spinal and epidural area, or have a spinal puncture have a risk of forming a blood clot that can cause long-term or permanent loss of the ability to move (paralysis). Your risk of developing a spinal or epidural blood clot is higher if:
•a thin tube called an epidural catheter is placed in your back to give you certain medicine
•you take NSAIDs or a medicine to prevent blood from clotting
•you have a history of difficult or repeated epidural or spinal punctures
•you have a history of problems with your spine or have had surgery on your spine

If you take ELIQUIS and receive spinal anesthesia or have a spinal puncture, your doctor should watch you closely for symptoms of spinal or epidural blood clots or bleeding. Tell your doctor right away if you have tingling, numbness, or muscle weakness, especially in your legs and feet.

Are you in AF all the tine or do you have episodes from which you convert to NSR?

Liz

Quote
jpeters

Thank you for your response. I attended an AFib Patient conference in Dallas, TX last month. There were several doctors that were the best in their field of medicine—AFib. After 3 days of listening to these doctors, I spoke with Dr. Randall Wolf, who invented the Wolf Mini-Maze procedure, which eliminates the need for blood thinners. Hopefully, I will be a good candidate for this procedure. I am in the process of getting my reports to him.

In the meantime, I am taking several natural blood thinners including Nattokinase.

Interesting. Curious how you arrived at the decision to go for the mini-maze vs something simpler. Thanks.

At the AFib Patient conference many people said they have had to have several ablations. I want to get rid of AFib once and for all—no going back for more ablations and still having to take blood thinners. With Dr. Wolf’s mini-maze procedure, which is minimally invasive, the AFib is gone.

Quote
Elizabeth
Lindy:

The following is taken from the black box, it does say if "you have a history of difficult or repeated epidural or spinal punctures"

Spinal or epidural blood clots (hematoma). People who take ELIQUIS, and have medicine injected into their spinal and epidural area, or have a spinal puncture have a risk of forming a blood clot that can cause long-term or permanent loss of the ability to move (paralysis). Your risk of developing a spinal or epidural blood clot is higher if:
•a thin tube called an epidural catheter is placed in your back to give you certain medicine
•you take NSAIDs or a medicine to prevent blood from clotting
•you have a history of difficult or repeated epidural or spinal punctures
•you have a history of problems with your spine or have had surgery on your spine

If you take ELIQUIS and receive spinal anesthesia or have a spinal puncture, your doctor should watch you closely for symptoms of spinal or epidural blood clots or bleeding. Tell your doctor right away if you have tingling, numbness, or muscle weakness, especially in your legs and feet.

Are you in AF all the tine or do you have episodes from which you convert to NSR?

Liz

Liz,
I am paroxysmal AFib. The part of the black box warning that I am referring to is:

Your risk of developing a spinal or epidural blood clot is higher if: “you have a history of problems with your spine or have had surgery on your spine”.

That is why I refuse to take anticoagulants.

Quote
Carey

Carey, I read that information in the black box warning on the information sheet that came with Eliquis. My back surgery was 2 years ago—I had a lumbar 3 level fusion. My gut instincts tell me not to take the Eliquis, even though I have it.

I think you're misunderstanding the black box warning and taking the aspirin is actually a greater risk, but obviously it's your choice.

Carey,

Please tell me what I am misunderstanding about this:

Your risk of developing a spinal or epidural blood clot is higher if: “you have a history of problems with your spine or have had surgery on your spine”.

Quote
Jackie
Hello Lindy and welcome.

On the clot risk topic... there are several posts on effective, natural blood thinners.... most recently, the one on
Lumbrokinase... a fibrinolytic enzyme that isn't soy-based. Here's the link and at the end, there are other links to
previous reports on natural thinners... and also important, the testing that can be done to document your risk of
hyperviscous blood... so you can manage those markers as well.

Lumbrokinase
[www.afibbers.org]

Then scroll down to these titles that are hyperlinked.


Viscosity Risk Factors

Silent Inflammation

Sticky, thick blood - Risk of Stroke and MI

Clot Risk

Jackie

Jackie,

Thank you so much for this information. I’m planning to have my blood checked for viscosity.

Lindy

Quote
Lindy
Please tell me what I am misunderstanding about this:

Your risk of developing a spinal or epidural blood clot is higher if: “you have a history of problems with your spine or have had surgery on your spine”.

It's a broadly worded warning. Have you investigated it any further? The warning is aimed at recent spinal surgery. If you were planning on spine surgery soon or had had it recently then by all means you would need to stop Eliquis. But surgery two years ago isn't a risk factor.

What many people don't seem to understand is that anticoagulants such as Eliquis do not cause bleeding. They only prolong bleeding that was caused by something else. Aspirin, on the other hand, actually does cause bleeding (in the GI tract). Thinking that it's a safer alternative to anticoagulants is incorrect. It is not. It carries a higher bleeding risk than anticoagulants and is far less effective at preventing strokes due to afib. It's a lose-lose substitute.

Quote
Lindy
With Dr. Wolf’s mini-maze procedure, which is minimally invasive, the AFib is gone.

As I understand it, the Maze procedures carry a significant risk of atypical flutter developing afterwards. And that will require an ablation to fix. I'll admit I'm not well versed in the Maze stuff, but I'd certainly ask those questions before making my decision.

Quote
Lindy




At the AFib Patient conference many people said they have had to have several ablations. I want to get rid of AFib once and for all—no going back for more ablations and still having to take blood thinners. With Dr. Wolf’s mini-maze procedure, which is minimally invasive, the AFib is gone.

Nothing is 100%. Noted in the reference is that success depended on how you measured it, and some people continued on arrhythmics (and I assume anti-coagulants). For easy paroxysmal cases, regular far less invasive ablation by a highly skilled EP is most likely comparable, and you're back to normal routines in a few days. If you need a touch up, it's even easier.

[www.stopafib.org]



Edited 1 time(s). Last edit at 09/04/2018 11:05AM by jpeters.

I think Lindy is talking about cox-maze IV?
Dr Wolf did say that it's only done once and if there is afib (or flutter?) afterwards an ablation is the way to resolve it.
It was also mentioned that success rates do vary and depends on the skill of the doctor - as with ablation.

Quote
Joe
I think Lindy is talking about cox-maze IV?
Dr Wolf did say that it's only done once and if there is afib (or flutter?) afterwards an ablation is the way to resolve it.
It was also mentioned that success rates do vary and depends on the skill of the doctor - as with ablation.

Joe,
I’m not talking about the cox maze IV. I am talking about Dr. Randall Wolf’s ‘mini maze’ procedure.

[wolfminimaze.com]

Quote
Joe
I think Lindy is talking about cox-maze IV?
Dr Wolf did say that it's only done once and if there is afib (or flutter?) afterwards an ablation is the way to resolve it.
It was also mentioned that success rates do vary and depends on the skill of the doctor - as with ablation.

Wouldn't have worked for me, because there were other areas outside the pulminary veins that needed ablating. I didn't need the LAA isolated, which is standard for this procedure (LAA exclusion).



Edited 1 time(s). Last edit at 09/06/2018 01:12AM by jpeters.

Quote
Elizabeth
Lindy:

The following is taken from the black box, it does say if "you have a history of difficult or repeated epidural or spinal punctures"

Spinal or epidural blood clots (hematoma). People who take ELIQUIS, and have medicine injected into their spinal and epidural area, or have a spinal puncture have a risk of forming a blood clot that can cause long-term or permanent loss of the ability to move (paralysis). Your risk of developing a spinal or epidural blood clot is higher if:
•a thin tube called an epidural catheter is placed in your back to give you certain medicine
•you take NSAIDs or a medicine to prevent blood from clotting
•you have a history of difficult or repeated epidural or spinal punctures
•you have a history of problems with your spine or have had surgery on your spine

If you take ELIQUIS and receive spinal anesthesia or have a spinal puncture, your doctor should watch you closely for symptoms of spinal or epidural blood clots or bleeding. Tell your doctor right away if you have tingling, numbness, or muscle weakness, especially in your legs and feet.

Are you in AF all the tine or do you have episodes from which you convert to NSR?

Liz

I just had a spinal nerve block done for a herniated and bulging disc and I am on elequis. I had to stop the elequis for 3 days prior to the procedure and started back on the elequis the same day. What was interesting was the list of other natural supliments I would have had to stop taking as well to have the proceedure done. I wish I would have read this conversation before I went I woul dhave kept the list.