Flecainide & Propafenone shot my heart up over 170bpm

Hi, first let me say that i've read on this forum for a few weeks before posting. I have enjoyed reading and learning so much from the very knowledgeable people here. There is a ton of great and helpful information and i'm glad a forum like this exists.

With that said, I have a few questions i'm hoping to get help with and not sure if I should create different threads or keep them in this thread.
In short, I'm a 48 y/o Male, diagnosed with Afib about 4 months ago. I was prescribed Amiodarone which worked excellent, but which my Cardiologist said they won't leave me on more than a month as it can be toxic. I was taken off Amiodarone, prescribed Flecainide and within a few days I had the worst, racing heart rate I've ever had. I was sweating uncontrollably, dizzy, and my heart rate was over 170bpm. I went to the E.R., they did all kinds of tests, ultra sound, echocardiogram, blood work, etc, and after 3 days they deemed it to be the Flecainide.

The Hospital Cardiologist took me off of that and prescribed Propafenone. Insanely, within 3 days I had possibly even worse racing heart rate and the same symptoms I had with Flecainide. Again, I went to the E.R. and after tons more tests, chest ex-rays, etc, they told me I shouldn't of been prescribed Propafenone as it's in the same type 1C class as Flecainide, and that's what is causing these issues.

I was then prescribed Sotalol and monitored for 3 days. I should mention I had never been admitted into the hospital before this and thankfully haven't been admitted since. Anyway, with the Sotalol, they monitored the QTC and it was great. The issue was 120mg of Sotalol didn't slow my heart rate enough and I was prescribed Diltiazem at 120mg on top of the Sotalol.

The two questions I have 1) is why did the Flecainide and Propafenone cause far worse issues than AFIB (at least for me) ever did? I should also mention on several ECG's on those medications I was in AFLUTTER and not AFIB. i've tried to research this and can't find much as to why I had those reactions on those medications.

2) Sotalol & Diltiazem together apparently can lower the heart to very low rates, but for some reason with me even 240MG of Diltiazem and 120MG of Sotalol keep my heart rate at rest between 105-118. When i'm sleeping it seems to get around 85-90, but resting still seems high. Everything I have read says Sotalol and Diltiazem shoudln't be used together and my PCP who has 40 years of experience said he would never prescribe those medications together because of how low the heart rate can get.

What are the thoughts on both of these things, and I thank anyone in advance for their input.

Unfortunately, you seem to be one of the few people for whom flecainide is pro-arrhythmic. It's rare but it happens. The second doctor was correct saying you shouldn't have been prescribed propafenone because, as he said, it's in the same class of drugs so the end result was predictable.

I don't think your PCP has enough knowledge in this area because combining those two drugs isn't actually all that unusual, and obviously it's not lowering your heart rate too much. You need to find a good electrophysiologist (EP) in your area to get a handle on this. Not your PCP, and not a general cardiologist. You need an EP.

Thanks for the reply, Carey. When you say rare how rare is it to have that pro arrythmia? Also, is that the 1:1 conduction that I read about that could possibly be fatal or is that something entirely different? As mentioned ecg's initially were afib and after the Flecanide they were all A flutter.
It looks like with the sotalol and diltiazem I'm also in aflutter mainly vs afib as the ekgs on my kardia and fitbit say tachycardia or inconclusive most of the time and I see the sawtooth pattern.

You hit it head on with my PCP and what's funny is he actually said exactly what you did. He said he would never prescribe both
Medications together because of a potentially low heart rate. He said a cardiologist has much more expertise on the matter. I did have an EP initially but for a few reasons decided to switch. The issue is the EP I have is very difficult to get into and see in person. I've done phone zoom calls with this EP and told them if medication doesn't help then I'd consider an ablation at a later time. The one thing I didn't mention is I've gained too much weight over the years and want to lose 60lbs and see If my afib/flutter gets better. I'm actually down 25lbs the last 2+ months so I'm close to half way there.

I also have never had any noticeable afib/flutter symptoms unless I had lots of alcohol. This is how I found out I had afib to begin with. My reaction to flecanide and propofenone were the worst I've ever had. Ive since cut the alcohol out and on Sotalol and Diltiazem even with a higher resting heart rate I've never had a single symptom. With that said I'm understanding this can still be a problem as my heart can weaken over time at 105-115 average resting heart rates?



Edited 1 time(s). Last edit at 06/27/2023 11:58PM by cornerbax.

Honestly, you don't need to see the EP in person. They need to see your records and you need to talk with them or their nurse practitioner, which is actually the standard these days. That can be done by phone, Zoom, or any number of methods. An EP doesn't need to physically examine you so an in-person meeting just isn't necessary. So get used to the new normal and consult an EP to get yourself squared away.

Got you. As mentioned though I did speak to the Nurse Practitioner and then the EP. I did send him all my hospital records.
He reviewed them and didn't push any ablation but did mention it. He was good with me losing the weight and just mentioned long term with no ablation and not in normal sinus rhythm my heart could weaken over time. My next video call is in three months so Ill see how that goes.

With that said with the reaction I had to the Flecanide and propafenone how rare is that? Is that the 1:1 potentially fatal conduction flutter I read about or is that something entirely different?

Quote
cornerbax
With that said with the reaction I had to the Flecainide and propafenone how rare is that? Is that the 1:1 potentially fatal conduction flutter I read about or is that something entirely different?

Flecainide is commonly prescribed with a beta blocker or some other rate control med to mitigate this risk. Propafenone has beta blocking built in, though it didn't work for you. Our other moderator, Shannon, had 1:1 conduction flutter from an on-demand dose of flecainide (which he'd been using for a while) around 2008 in Holland. From this 2021 case report, only a few cases have been reported [www.ncbi.nlm.nih.gov].

Quote

Everything I have read says Sotalol and Diltiazem shouldn't be used together and my PCP who has 40 years of experience said he would never prescribe those medications together because of how low the heart rate can get.

Clearly the too low heart rate not an issue for you. Probably good your sleeping heart rate is under 100. Hopefully you'll get an echocardiogram to check on your ejection fraction with your next visit, or have your PCP order one.

There's a reason most of us take a nodal blocker like Metoprolol or Diltiazem with Flecainide. That's because Flecainide has pro-arrythmic properties that can sometimes induce aflutter and in the worst case 1:1 Flutter which can be a real medical emergency., even fatal.
So if you weren't prescribed a nodal blocker to take along with the Flecainide, you're lucky things didn't get worse.

That said, it does sound that Flecainide is not right for you and hopefully you'll find something that will work. There are a number of anti-arrhythmics to choose from, including what you're doing now. An ep is best to guide you here as it's beyond the pay grade of GP's and even most general cardiologists.

I took Sotalol & Diltiazem together for several months and had no issues. Same dosage you are taking. The Diltiazem was changed by the EP to the extended release. I was also told I could use 60mg Diltiazem as a PIP in the event I had afib episode where the rate was high. I only had one episode that I took the 60 mg to bring the rate down below 100 and then eventually converted on my own. Since the ablation I am off the Sotalol.

There was no concern w my MD's about the two in combo. The concern was the Lisinopril in combo and they took me off of that.

Thank you all for the responses I appreciate the great info. I should of stated I was on metoprolol with the Flecanide and had those extreme
Reactions. I never had afib anywhere near what I had on flecanide and propafenone. Those medications actually got me so dizzy I nearly passed out multiple times. With my worst case of afib I never was dizzy and never felt like I was gonna pass out. The worst case I've ever had was after drinking a lot of alcohol at the time I was short of breath like out of shape and my heart rate was over 140. I've never even seen my heart rate get to 150 with Afib without any medication and I don't know if this is normal but even my heart rate in the 130s I never felt symptoms or even rapid palpitations. I don't even feel anything below 130. Over 140 is when I really can feel It. Anyway those medications I felt I was an
ounce from passing out and collapsing massively short of breath severely dizzy and over 170s heart rate while sweating uncontrollably. Worst feeling of my life by far. Even with metoprolol I had all those extreme issues.

Thankfully I've had zero known issues on sotalol and diltiazem. . I am also on eliquis 5mg twice a day but I know that's an anticoagulant. I've been on that from day 1 and still now with sotalol and diltiazem. George, I had two echocardiograms done in the last 8 months one was in the hospital after these reactions to the Flecainide. Would ejection fraction show up on those echocardiograms? I have the reports.



Edited 2 time(s). Last edit at 03/07/2024 01:48AM by cornerbax.

Quote
cornerbax
I had two echocardiograms done in the last 8 months
One was in the hospital after these reactions to the Flecanide. Would ejection fraction show up
On those echocardiograms? I have the reports.

The EF should be on those reports. It is a big reason to do an echo on an afibber.

From memory, normal EF is 55-70%. With a somewhat elevated heart rate, this is one thing you want to pay attention to.

Quote
cornerbax
With that said with the reaction I had to the Flecanide and propafenone how rare is that? Is that the 1:1 potentially fatal conduction flutter I read about or is that something entirely different?

I don't have numbers but I would call it very rare. What you experienced probably wasn't 1:1 conduction because that would have produced a heart rate well over 200 bpm.

Thank you again for the response and very helpful info. I just checked my last Echo and it shows an Ejection Fraction of 55% via the Simpson's Method? I did a quick search and from what I read it says in a normal male it should be 52%-72% which would put me in a Normal Range based on what I read. Not sure if that's accurate I only read one article I think from Cleveland Clinic and that was the range.

Is someone that has a healthy heart closer to the 72% or is anything within the 52-72% Range equally as good?

Thanks for the response, Carey. I am pretty sure it was only in the 170's with the Flecainide or Propafenone, as when I went to the E.R. I was just over 170 when I get there and there ECG shows the exact same heart rate my Fitbit did, amazingly. I'm just thankful to never have a resting heart rate or those symptoms like that since i've been off Flecainide and Propafenone.

Quote
cornerbax
Is someone that has a healthy heart closer to the 72% or is anything within the 52-72% Range equally as good?

I'd say you are fine as long as you stay where you are. There are various ranges for normal (basically the bottom is 50-55% depending on the reference and probably there are different methods that have slight range variances), but 39-40% or below is heart failure territory. My recollection is 18% is heart transplant range.

You just want to keep an eye on it. If it starts heading materially lower, it would be time to consider other treatment options. If your sleeping heart rate goes over 100 or your daytime resting heart rate increases materially from where it is, my non medical opinion would be to immediately notify your team.

Thanks George, I'll ask about this on my next conversation with my EP and keep an eye on my heart rate. Thanks for the info.

The longer you are in persistent afib, the more difficult getting a successful ablation can be. With your situation and at age 48, I'd consider an ablation, as you've got hopefully a lot of life ahead and no telling how long the meds you are on will keep your heart rate in range. That being said, given you've been in persistent afib, a doc like Dr. Natale would be my choice, if possible. If you've not read this thread, I'd do so. Then you'll see why choice of ablating EP is so important.

I was in normal sinus rhythm about a year ago at my physical. My PCP has the results. Looking back though I believe I had my first bout with afib about 4 years ago doing a moderate hike. I took it as being out of shape but I always felt like it was more than being out of shape. Anyway, about a year ago I took an Ecg on my yearly physical and was normal.

I've likely had persistent afib for just under a year. Is that a long time to be in persistent afib? I looked up Dr. Natale and see the great reviews overall here and see they are in TX and San Diego. I live in California... Does Dr. Natale Conduct albations in San Diego or only Texas? Also, would I be able to speak with Dr. Natale on a zoom call to ask questions before scheduling an ablation?

Quote
cornerbax
I looked up Dr. Natale and see the great reviews overall here and see they are in TX and San Diego. I live in California... Does Dr. Natale Conduct albations in San Diego or only Texas? Also, would I be able to speak with Dr. Natale on a zoom call to ask questions before scheduling an ablation?

He also does ablations at Thousand Oaks, CA, though some patients have said that the followup care is better in Austin as he has an excellent team there to follow you post ablation--I can attest to this. Some have also said that the imaging equipment is better in Austin, but this is something that you would have to ask about. After Dr. Natale reviews your medical records, prospective patients do have a zoom call with him and his NP to ask questions and for him to share his assessment. Texas Cardiac Arrhythmia Institute in Austin is set up for out-of-town patients and an ablation only requires one in-person visit. You stay overnight in the hospital and are then asked to stay in a local hotel for a couple days more in case of complications. I flew in from out-of-town and everything went like clockwork.

Very nice. I don't live far from Thousand oaks but if it's better to go to TX than that is what It is. How would I get in touch with Dr. Natale? Do I need a referral?

Quote
cornerbax
Very nice. I don't live far from Thousand oaks but if it's better to go to TX than that is what It is. How would I get in touch with Dr. Natale? Do I need a referral?

Call Norma Bazerghi RN, MSN, MBA, Texas Cardiac Arrhythmia
Single Trip Procedure Coordinator for Andrea Natale M.D.
Direct Line: 512-615-6205
Fax: 512-776-1978 Attn: Norma

Whether you need a referral depends on your insurance--you don't with Medicare.

Thanks for all the info Daisy. I will give them
A call. I have anthem ppo best insurance ive
Had in my life. They've covered virtually everything.
I'll give them a call and hopefully get an inital
Call setup to ask some questions and go over the mitral valve concerns at that time.

Here is an anecdote from one of the people I encouraged to see Dr. N. My friend and his wife flew in from Denver. When they arrived at TCAI in Austin, a docent asked them where they were from. When they answered Denver, the docent said, "You must be here to see that Italian doctor, people come from all over the world to see him!"

Definitely....from everything i've read this is the type of EP you definitely want to do an ablation.