Report on New EP and Questions on Flecainide

For the past five years since my afib started, I've just been taking the recommended supplements from this webpage and using PIP Flecainide when need. Recently I had stopped my supplements and in time the afib episodes started happening once a week, so I started them again and began taking 75mg of Flecainide nightly to fend off the episodes (I have vagal afib which almost always occurs when I'm asleep) which has been working. But I scheduled an appointment at the nearby University of Penn EP lab to see a new EP, for if/when I need an ablation.

I saw the new EP last week and some things I found a little disappointing with the new EP (and my previous EP), and which may be common with most EPs:
- They seem to have little interest with treating the condition with supplements. This isn't too surprising though.
- They seem to have little interest with treating the condition with medication and would rather just go straight to an ablation. The cynic in me wonders if it's because of the profit, though to be fair their view seems to be "you're going to need it eventually, so why not just do it now?"
- They seem to have little knowledge on the differences in treating vagal afib. He wanted to switch me to Propafenone with a beta blocker, until I reminded him that it could worsen my vagal afib (heck, my resting pulse is already 60 bpm and drops into the 50s at night). He then put me on Flecainide (50mg bid) and Diltiazem (120mg), a calcium channel blocker to prevent prevent 1:1 conduction and atrial flutter.

I must say that I am considering the ablation route since he does make a good argument - I'll likely get it done at some point, I'm still young now (~45 years old), my left atrium is still normal, I could avoid medication, etc - but I would like to give a low dose of daily medication a try since I've only use the PIP approach before. With this in mind, I had a few questions on Flecainide:

- Have others had success with taking Flecainide only once a day, before bed? It's worked for me and the doctor didn't care if I tried that approach first.

- If taking Flecainide once a day and at a low dose (50 - 75mg), do I really need the Diltiazem?

- Are there any noteworthy side effects of long-term, low dose usage of Flecainide?

Thanks for your help.

Mark



Edited 3 time(s). Last edit at 02/25/2017 08:48AM by MarkF786.

Mark,

First of all, congrats on your knowledge and avoidance of propafenone in your situation. I wish I had known, because it did put me in flutter and it was no fun - I also had no warning from my EP that it might happen. Recently had another one (after a flutter ablation) with ER visit. My follow-up with my EP left me feeling like he was a nice guy with no real interest in my specific situation; that he was following a fairly simple flow chart based on old statistics, and that he is very much "in the box". I'll let others address the Flec question because I've never been on it.

I wouldn't hang the supplement thing on your EP; its just not part of the western medical education or insurance structure. It would be nice but probably would require tests not covered by their patients' insurance and would expose them to liabilities that aren't covered by their malpractice insurance, etc, yada, yada.

Re the ablation vs supplements vs drugs conundrum, all I can say is that I am now ready to try an ablation. It took a while: supplements, diet, acupuncture, one flutter ablation, a few relatively quiet years on propafenone, two cardioversions two other ER visits and a lot of research to get me to this point, about 5 years, and my QOL has been good. But I've talked to enough people at this point to think that an ablation is a good next step, and that the sooner I do it in the process (I'm still paroxysmal) the better chance I have of success. I'm 58 and like to be active and the drugs sap my energy and cap my heart rate, I'd like to be off them for a while at least. And my wife is getting tired of rushing me to the ER. So I'm headed to Austin at the end of March.

My EP has been very conservative re ablation and would keep me on drugs forever I think if that's what I wanted. But I've read some stories about docs and EPs who get afib and go straight to mini maze procedures (even full maze I think). Seems like what they know is that if the lesions can be made well and if they last, that's the best solution at the moment. I have a quote from Dr. John Sirak (five box mini maze) talking about how difficult it is to achieve transmural lesions via catheter ablation, the statistics bear him out, and Shannon sees this as well. Which is why if you do decide to go the ablation route, everyone on these boards tells you to go to somebody really good at it.

Good luck. You're knowledgeable and doing you're homework; you'll know if and when its time for an ablation.

Yeah, I totally empathize with doctors not being interested in treating afib with supplements; it can be complex and unique to every individual, it can be time consuming to get it right, many patients might prefer a 'quick fix', etc. This may also be true with medications to a degree. If a doctor is skilled with ablations and has a high success rate, I can understand them wanting to quickly go that route since it does seem inevitable for most patients.

The EP I saw, Dr. Garcia Fermin is the director of the Penn's EP lab; he and the lab seem to have a good reputation:

"Penn electrophysiologists introduced the use of catheter ablation for atrial fibrillation (AF) in 1997. The team currently performs more than six times the national standard of AF ablations procedures. The number of catheter ablation procedures performed at Hospital of the University of Pennsylvania (HUP) each year for cardiac arrhythmias amounts to more than the total of three of the next largest centers in the region combined."

I'm not sure if it's worthwhile traveling to Austin since my case seems to be pretty straightforward. I understand the benefits of going with the best doctor (Dr. Natale), but I don't know if the complications introduced by him being 2000 miles away outweigh the benefits with a simple case like mine, especially if Dr. Garcia is highly respected. Any thoughts?

Good luck with your ablation!

Mark, I took Flec for about 4 years, first as a pill in pocket (usually 300mg) and then daily (100-200mg), depending on how much I needed to be in NSR. The only side effect that I am "somewhat" sure about is Dry Mouth and a low Saliva PH. It took over a year after stopping the Flec for the condition to return to normal. I couldn't find much on Flec alone being the reason in my research, only that Dry Mouth can be caused by medications. Since that is the only med I was taking along with a blood thinner (which I still take), it was probably the Flec that caused the problem.

Looking back, I should have done my ablation sooner than later. Moving early on it could assure only one procedure is needed rather than two or three. I would also go to a high volume center with a Doctor that has done a high volume of successful procedures.

Best of Luck in fighting this...ron

Mark,

Shannon gives Penn's EPs high marks, I would get his feedback before deciding but I imagine you'd be in very good hands there.

As you say, Dr. Natale may be overkill for me - I hope so. But to get to someone really good I'd have to travel anyway, so that's part of my equation. The other is that when I had my vasectomy I went to a guy who had done 40,000 of them!

Sounds like you should re-examine the supplements, before jumping immediately to an Ablation.
Did u restart them?
What is your status or history of taking Mg?
Your scenario is roughly like mine was. For me, I benefitted from going back and re-examining ways to get more Mg in my body, as I saw a correlation with NSR and how much Mg I was taking.

Yes, a few weeks ago I restarted my previous supplements. I had stopped when an Ayurvedic doctor recommended stopping all supplements and getting all my vitamins & nutrients naturally (a lot of good that did!). BTW, I saw the Ayurvedic doctor for general wellness, nothing related to afib. My afib had been doing very well, so I hadn't even been worrying about it at the time when I took her advice.

I'm only taking about 400mg of Mg (Dr. Best Mg Glycinate) but I'm going to try upping it. For my weight, RDA alone would be 600mg so I'll target that at first, and maybe even go up to 900mg gradually.

Hi Mark - Just a reminder: We are all unique, individual cases... with age, nutritional status and other influencing factors that can interfere with or affect both reactions to supplements as well as meds. Therefore, it's virtually impossible to give strict standard guidelines, but since this forum began, many of us have been participating for a long time and definitely know that certain factors are practically a 'guaranteed' constant and others are highly individualized. I joined in 2002 (+-).

My afib began in 1995 so by 2002, I was becoming desperate to find a solution since the meds I was on were becoming ineffective. I also learned quickly that it was a waste of appointment time to talk about nutritional supplements with typical cardiologists and most EPs....back then. Now, many EPs at least agree that magnesium is 'useful.' Although there is science confirming that, I think that many have just given in...thinking... “it probably can't hurt.” I was fortunate that a practitioner of Functional Medicine moved into our area and I had benefit of her guidance.

I'm relating this to you because I learned here and via ExaTest that I was low in magnesium and potassium.... even though I had been supplementing with 'some' magnesium, it was not nearly the amount I required to regain stability. In the report titled, "The Strategy," I wrote that once I learned that and with help from this forum, I went from escalating afib events to where they were nearly daily and for lengthy duration down to zero events... by being very diligent with the core nutrients that worked for me....so much so that I nearly cancelled my ablation date scheduled in 6 months with Dr. Natale when he was here at the Cleveland Clinic’s department of Electrophysiology. The only roadblock was news that at the end of the year, it was rumored that my excellent insurance might change and I didn’t want to risk not being able to see the EP of my choice. So, I did proceed and all was fine. In years 3 and 4, post ablation…. I had a few breakthroughs and each time, I was able to reverse to NSR with my Pill in a Pocket (PIP) approach and loading up on the core nutrients which I called the Essential Trio… magnesium, potassium and taurine. Later, I added others and remained stabilized until 11 years after the initial ablation.

I won’t go into my whole saga, but my point is, regardless of whether you choose ablation or not, you will still need to manage or correct the imbalances that are at least supporting the Afib tendency…if not directly responsible for it. Example in my case. At one point in time, a well-intentioned family practice physician was telling me that as a woman, it was important to take calcium to support long-term healthy bones. I was doing that when I realized that most every night when I took the calcium, more often than not, I’d go into Afib. When I found this forum and learned that (excitatory) calcium blocks the benefits of relaxing magnesium, I stopped the calcium and no longer had regular nightly Afib. From this forum, I also learned the importance of maintaining an alkaline tissue pH…thanks to the magnesium bicarbonate concentrate which we call WW or Waller Water. That’s essential for overall health – with or without arrhythmia.

So, I’m encouraging you to assess your diet for potential culprits or triggers, change suspect lifestyle habits … like salty junk food or heavy exercise and dehydration plus loss of critical electrolytes, alcohol which depletes same, etc… and also experiment with the drugs that help convert you from Afib. I learned early on that because I was vagal, beta blockers on a daily basis were bad news. But, I did find success using them at the onset of AF in the PIP protocol along with flecainide. I did not tolerate Betapace or Rhythmol.

Typically, it can take 4 – 6 months for a new program of supplements to settle your heart consistently. And… even if you do have an ablation, magnesium and several other core nutrients typically remain essentials in one’s daily routine. It just makes sense. You have to find your own “story” and then implement those adjustments into your life.

It also makes sense that if you are not able to reverse the Afib trend, then having an ablation earlier rather than later gives you the best possible chance for success and may only require just one procedure. As you’ve noted in comments from Shannon and others, it’s important to go to one of the top tier or ‘elite’ EPs so you have a safe and successful outcome.

We are all here to help and the archived resources are absolutely packed with useful tips. Just ask and we can direct you useful reports.

Best to you,
Jackie

> - They seem to have little interest with treating the condition with supplements. This isn't too surprising though.
> - They seem to have little interest with treating the condition with medication and would rather just go straight to an
> ablation. The cynic in me wonders if it's because of the profit, though to be fair their view seems to be "you're going to
> need it eventually, so why not just do it now?"

Same experience for me.
re: recommending "just go straight to an ablation", another doc told me,
"if you go to a barber, you are gonna get a haircut".

BD

Quote
MarkF786

- Have others had success with taking Flecainide only once a day, before bed? It's worked for me and the doctor didn't care if I tried that approach first.

- If taking Flecainide once a day and at a low dose (50 - 75mg), do I really need the Diltiazem?

Mark,

I've had afib for over 12 1/2 years. The first two months it came every 10-12 days and lasted 6-9 hours. Then I had a persistent episode that lasted 2 1/2 months (terminated by pip flec). My EP, during the persistent episode, suggested I stay out of rhythm. I proposed that he convert me chemically or electrically, prescribe PIP flec & I'd use electrolytes (primarily magnesium to bowel tolerance) to stay in rhythm. This worked very well for quite a few years and I'd have stretches as long as two years without an episode. When I did have an episode, PIP flec would convert me usually in an hour. Five years ago, I went through a divorce. My control worsened, at one point I had 4 episodes, 4 nights in a row. A cardio suggested I could take the flec daily to prevent episodes. I started at 300 mg at bedtime. It worked and the next night dropped it to 200 mg at bedtime. That worked too. Shortly I began titrating the dose down slowly. I also added powdered ginger to the night time routine see my ginger post. I then continued successfully titrating the flec to 0 over a month or so. This worked pretty well. Using just ginger and no flec (except as PIP), I'd have episodes maybe monthly (from memory). I assumed my worsened control was due to divorce stress. About six months after starting the ginger, I reread the literature and realized it could be calcium that was the bad actor (I'd been stress eating wheels of brie). I quit the cheese and my control became stellar again (3 episodes in 3.75 years for a total of about 2.5 hours of afib). My logic for using the flec in one dose was that 3 am was always my risk time. I did not need to keep my serum level of flec constant. I should note this was my own creation and not prescribed this way by a doc - caveat emptor. I've also never used a beta blocker or calcium channel blocker with my flec. There may be good risk reduction reasons to do so, but I've never done it.

George

Thanks for the feedback everyone.

I had been settling into the new meds the past couple days, then last night had a bit of a scare with my heart rate dropping to 50 bpm, and making me feel dizzy. It seems the low dose of Cardizem LA is maybe too much for me - and there isn't any lower dose and the tablet can't be split since it's time release. I spoke to one of the PAs at my EP's office and she said that I should stick with the Cardizem longer (unless I feel like I'm going to faint!) since my body should adjust in time.

I'll stick with it another week to see if it improves, but otherwise I've been leaning towards an approach similar to George's. At the moment, I only require 75mg at night to keep me stable, so soon I'll drop to 50mg, while adding ginger and continuing with replenishing my Mg.

I have begun to pay attention to my calcium too. Most days I eat two cheese sticks for breakfast (a habit I started when on a low carb diet), but yesterday I cut them out - but then wonder if that interfered with Cardizem, which is a calcium channel blocker, causing the abnormally low heart rate. I then drank a large glass of kefir (dairy) which did increase my heart rate to about 60bpm. I figure Cardizem might have a similar effect as low calcium / high magnesium, though that's likely an oversimplification.

It can be challenging to find the right balance of magnesium/calcium and potassium/sodium - especially when medications are thrown into the mix that changes the balance, which is the case with many blood pressure / rate control meds.

Kind regards,

Mark