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My afib episodes are being managed by 300mg of Flecainide (pill in the pocket). My EP suggested that if eventually the pill-in-the-pocket approach doesn’t work or the frequency of my afib episodes become bothersome, that the protocol is to go on a reduced daily dose of Flecainide with a beta blocker prior to considering an ablation.
Based on what I’ve read on your blog you opted for the ablation immediately. Why did you do that? Why didn’t you continue to take flecainide for a while? Is flecainide dangerous over the long term? What am I missing?
In this Q&A session I explain to Peter why I went straight to an ablation instead of relying on drugs (specifically flecainide) over the long term.
In this episode you’ll discover…
- How I managed my afib through the years – first with cardioversions, then pill-in-the-pocket, and then an ablation
- As my episodes progressed I faced the decision: ablation or drugs
- Why I ultimately chose an ablation over drugs
Treating Afib with Cardioconversions
I was first diagnosed with afib on Father’s Day in 2006. At the time, I thought I was having a heart attack. I got carted away to the hospital in an ambulance. That was real fun – NOT. They ultimately ended up cardioconverting me. Through the course of the next eight years I had episodes about once every year or two. Then in 2014 my episodes became more frequent. I was having episodes every month – sometimes every week. It was a nightmare.
During that eight-year period, I always treated my afib episodes with a cardioversion in the ER. Keep in mind I only had an episode once every year or two during that time so we’re only talking about four episodes. Every time I had an episode I would go to the hospital and just get cardioconverted right there on the spot. The cardioconversions weren’t a big deal and they always worked for me, but they were a major inconvenience and were very expensive.
Treating Afib with Pill-in-the-Pocket
In 2014, my EP told me about this thing called pill-in-the-pocket. I thought to myself, why didn’t someone say something about this to me in the past because it was a godsend! Just like Peter, I would take 300 mg of flecainide at the onset of an afib episode and it worked like a miracle. Every time I would take it, I would convert to normal sinus rhythm in four to six hours. It was wonderful. I no longer had to make trips to the hospital when I had an episode. Life was good.
What To Do When Atrial Fibrillation Progresses
Unfortunately, about the same time I was introduced to pill-in-the-pocket, my afib episodes became more frequent. As I’ve said in previous Q&A episodes, atrial fibrillation is very unpredictable. I wasn’t sure what was going to happen. I didn’t know if I was headed towards persistent afib or if my episodes were eventually going to calm down again.
Most people in this situation will ride it out and just see how things go. They will typically turn to drugs as a stopgap solution. That’s the route most doctors recommend. That’s why Peter said his EP said, “The protocol is once the pill-in-the-pocket doesn’t work anymore, we go to a daily smaller dose of flecainide with the beta-blocker and we kinda see how that goes. And we kinda see how frequent your episodes become and how bothersome they become. And then, if it becomes really burdensome, then we go to ablation.” That is the standard procedure just about every EP follows. My EP at the time said that to me as well. He said, “Well, at this point you’re getting episodes almost every week now. You can continue doing the pill-in-the-pocket if you want, because it obviously works for you, but I would suggest that if this continues much longer you should probably go to a smaller daily dose of flecainide.”
I wasn’t sure what I was going to do as I wanted to do more research so I could make an informed decision. As I did my research, it seemed like everything I read, whether it was a study or someone’s personal journey with afib, drugs ultimately didn’t work. I never read a success story from a drug user. All I read were these hard luck stories. People saying, “Oh, I get all these side effects, ” or “I’ve tried this drug and it doesn’t work,” or “I’ve been on this drug forever and my afib episodes are a little bit better but I have all these side effects!” Nobody was having success with drugs.
In contrast, I read a number of success stories from people who had ablations. People like Shannon Dickson, the editor of afibbers.org, was an example. He had been afib free for five or six years without taking any drugs after his second ablation. He had persistent afib going into his first ablation, and had suffered from afib for 15 years. He had a very complex difficult case of afib but despite that, after two ablations, we was afib free five or six years after his last ablation without having to take any drugs.
Steve Ryan, from a-fib.com, was another example. At the time he had been afib free for I think 12 years. He had one ablation and was afib free without any drugs going on 12 years.
Mellanie True Hills of stopafib.org was yet another example. She had been afib free at the time for five plus years or might have been seven years. She had the Cox-Maze procedure, which is a little more involved than an ablation. The point is, it was a surgical procedure, not drugs, that gave her her life back.
Then I read stories from regular people that didn’t have websites or blogs and they were talking about how great their lives were without afib after their ablations – without taking drugs either. I have a propensity not to take drugs. I just don’t like the idea of relying on drugs to treat anything. I fear the potential side effects.
Even if these drugs didn’t have side effects, the reality is even if they do work to help manage afib, for most people, not all, but for most people these drugs lose their efficacy or their effectiveness over the long term. I don’t know of anybody that says, “Well, I’ve been taking daily flecainide for 30 years and it has completely kept my afib at bay. I’ve never had an episode since I’ve been on flecainide.” You just don’t hear those stories.
Now again, I don’t wanna say… I hate to put these blanket opinions ’cause there’s gonna be some people that are out there listening and saying, “Oh hey, wait a minute, I’ve had AFib for 30 years and I’ve been taking beta-blockers and I’ve been just fine.” And again, everybody’s different and that’s the thing. For some people, maybe drugs works fine and for some of you, drugs is… You’re perfectly okay with drugs. In fact, you’re more comfortable taking drugs than you are going under the knife so to speak, although just so you know, ablation, there’s no cutting. [chuckle] They do it all through catheter so it’s not an invasive procedure at all. It’s not like open heart surgery.
My Decision to go Straight to an Ablation (and Skip the Drugs)
After I did my research and thought everything over long and hard, I chose to go straight to an ablation. I didn’t want to wait around for another year or two to see how things played out. And let’s not forget about the mental anguish that afib brings as well. I was not about to sit around for another year or two dealing with my afib!
It’s possible I could have stayed on the drugs and my afib could have been totally controlled for a handful of years. It’s also possible I could have been totally free of the side effects of those drugs. Who knows but I wasn’t going to wait around and experiment. I wanted to be done with afib once and for all!
Having the ablation was the best decision for me. I have been afib free now for almost three years. March 5, 2018 will mark my three year ablation anniversary. I haven’t been on any drugs, blood thinners, or anything. I have been living a totally normal life!
I will always lean towards ablations versus drugs to treat my atrial fibrillation. If my afib returns, and I completely understand that there is a chance that it will return, I won’t hesitate to go back and have a second touch-up ablation. I’ve always joked around with my wife and my friends and family that I will opt for open heart surgery if that’s what it requires to manage my afib. I will do a heart transplant surgery to treat my afib before I turn to drugs! For me, drugs are a last resort option.
Why? Because I know in most cases (not all) drugs simply won’t work over the long term and I will likely experience some side effects.
For me, I won’t take drugs unless I absolutely have to. I will always favor an ablation or a surgical procedure. At the end of the day, however, it’s a personal decision. Some people are more comfortable taking drugs while others like myself prefer surgical procedures.
Regarding Peter’s question about the long-term use of flecainide, there are certainly some potential side effects. The main issue with flecainide (and really any drug used to treat atrial fibrillation) is they tend to lose their effectiveness over time. They typically stop working at some point. I want something more sustaining and to me that’s an ablation so that’s why I went that route! Again, it’s a personal decision that every afibber needs to make.
What is your take on the ablation vs. drugs debate? Did you opt for an ablation or are you taking drugs instead to manage your afib? Do you regret your decision?
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I have discovered that my problem is stress and anxiety. If I take some Valium I get over it. Jackie
I couldn’t be more on the same page with you, Travis. I started with the pill-in-pocket technique, graduated to daily doses when that no longer worked, and am now scheduled for an ablation. I was on a beta blocker that made me depressed and impotent so I stopped taking it all together. I still take Flecainide daily and am starting magnesium supplements. Drugs just seem like a dead-end road…increasing doses, side effects, increasing cost, etc.
Wondering if you were/are a drinker and saw any correlation to your afib? When I would have one or two beers too many, I would often go into afib the next day. I quit about a year ago to see if it would make a difference. I wish quitting drinking made my afib disappear but it didn’t.
Thanks for what you’re doing!
I was a heavy drinker right up until my first afib episode. In fact my first episode was after a heavy night of drinking. Since then I have been a moderate drinker. I continue to drink today.
I know everyone says you shouldn’t drink if you have afib or any kind of heart problem but I enjoy having a couple cocktails every week and I’m not going to let this stupid condition ruin every “fun” thing I enjoy in life. Plus, I’m not convinced that moderate alcohol has any affect on afib.
As I stated in a previous Q&A session about drinking, if you have a couple drinks and you get afib, obviously don’t drink. However, if you have a couple drinks and you don’t get afib, then I say enjoy:) I’ve always been able to drink in moderation without getting afib so I continue to have a couple drinks every week.
I am interested in going the ablation route since I’ve been on meds for eight and a half years and I’ve had several cardioversions but always go back to afib. I was told that because mine is considered “permanent” only the convergent type of ablation would be successful for an extended period of time. Since that does involve minimally invasive surgery l have hesitated to go ahead with it. I would like to hear from people who have had this type of ablation or are knowledgeable about it.
Don’t rule out an ablation. If you went to an experienced afib center such as Texas Cardiac Arrhythmia in Austin, TX, you might be able to have an ablation. They have done thousands of complex afib cases over the years. By complex I mean people who have been in permanent afib for many months or even years. I strongly encourage you to start with them.
I wish you well!
I have a question unrelated to this article but don’t see where to ask it.
I am 64 and have been in permanent Afib since late December 2013. I was diagnosed in 2001 or 2002 probably, having very infrequent episodes until 2013. Since diagnosis, I’ve been taking atenolol, which I’ve learned may be a contributing factor to my now permanent condition.
I also had a couple successful cardioversion treatments but the third one didn’t work. Since I was a youngster I’ve also had occasional episodes of SVT, which was officially diagnosed in 1998. In 2013, at the time my Afib became permanent, I also was prescribed Digoxin to keep the SVT from “breaking through.” So, I currently take Atenolol and Digoxin, but no blood thinner as my cardiologist says my personal risk of stroke is low.
My question is: Is it possible to reverse permanent Afib?
Yes, it is possible to reverse permanent afib but it’s absolutely imperative that you go to a highly qualified EP. For a case like your’s, which would be classified as a complex “difficult” case, I would only recommend one afib center in the country – Texas Cardiac Arrhythmia (TCA). The vast majority of the cases they do ablations on are for cases like your’s. Also keep in mind that having been in afib for so long you may very well need two ablations. Furthermore, depending on the remodeling that has taken place and structural changes that have occurred in your heart over the years will affect how successful the ablation will be.
Still, though, I would still go to TCA and have an initial consultation. They’ll be able to tell you what your success rate could potentially be. They have helped thousands of patients like you over the years so don’t give up hope just yet!
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