Flecainide: Please define 'success'

Hi,

after having been an afibber for about 15 years (journey started when I was 32) finally I'm on flecainide (2x 100mg daily) since June 2013. I tried to avoid this as long as possible.

Initially Flec helped a lot. My episodes which before happened every second day or so (most of them only a few minutes but once in a week 4 hours) were close to zero in July, August 2013.

Then afib slowly started to come back but not nearly as bad as before. Currently I maybe have two longer self-converting episodes per month, but 'longer' now means mostly less than an hour (90 min. max) and one brief episode (only a few minutes) per week. Averaging of course.

At the bottom line the quality of my life improved a lot. I can bear the remaining afib and keep on being happy. ><

My Doc (a very well reputated german Prof.) thinks it is ok the way it is. He told me that the success rate of Flec is roughly 60%, i.e. a decrease of total afib burden of 60% could be considered as a success. Alternatively I could opt for an immediate ablation, but there were no need to rush he said.

What do you think? Total afib reduction in my case is way over 60%. Is what I experience with Flec a success or should I go for an ablation asap? Structurally my heart is ok (left diameter: 40mm).

Thanks so much for your help.

Best regards

Dirk

(Please excuse any grammatical mistakes.)



Edited 1 time(s). Last edit at 02/24/2014 05:20PM by Dirk.

Dirk,

I've been using a loading dose (300 mg) of flecainide on demand (pill-in-pocket, "PIP") to convert my afib since Nov. 2004. Initially, I converted a 2 1/2 month episode. This and the next episode one month later took 20 hours to convert. All subsequent episodes took between 1/2 and 4 hours to covert with almost all around 1 hour.

After the 2 1/2 month episode, I started taking magnesium, potassium and taurine supplements. Magnesium was to bowel tolerance, initially 1.2 g/day increasing to between 2 and 4g/day. Potassium has ranged between 1-4 g/day, but if mag is good, potassium is less important for me. Taurine is 4g/day.

In seven years, had about 10 episodes. Then I got hit with a large dose of stress - divorce. My episodes increased to the point of having them nightly. I converted all with PIP flec. Then I started taking 300 mg flec before bed and quickly reduced this to 200 mg. This worked for me. Shortly thereafter, I started taking a tablespoon of organic ginger powder spice before bed, along with the flec. This allowed me to titrate the flec to 0 mg over about a month. The ginger worked by itself for 3 or so months, then the afib returned. I continued to only use the flec to convert episodes, which were ~weekly. Analyzing my diet, I realized I'd added a lot of calcium (from cheese) to my diet from stress eating. Calcium can be a bad actor with afib. I cut almost all the cheese from my diet and I'm back to the control I had during the first seven years and have not had afib since May '13.

During the time I was having frequent episodes, I was ready to get an ablation from a top doc, as the longer you wait, with continued afib, the harder the job and the worse the statistics. With the kind of control I have today, I no longer feel the need for an immediate ablation.

If I was in your situation, I'd try the ginger and mag/pot/taurine, if you haven't already. If they didn't help, I'd be inline for an ablation - in Bordeaux if I could.

George

Dirk.

Sorry to mini-hijack your thread, but I noticed you said your afib started at 32.

Mine started at 35. Would you mine me asking what your episodes were like when you first started getting them? Did you feel them, or were they silent?

Did you really have multiple episodes per week for 15 years?

Is your afib vagal in nature?

Sorry to ask so many questions, but it's hard to find good data on people who started with afibs in their 30s.

-Eric

Hi Dirk,
I'm on same dose flecainide past eight yrs. my definition of success is it reduces number of episodes and at some point terminates episodes so I do not have to go hospital (1 to 24 hours) on flec I still have episodes maybe once a month average lasting 4-5 hours, recently they increased to once a week. I'm not happy with that. At beginning I started with two a year, then five a year, etc. Also I noticed certain times the flec was real effective for months then for whatever reason lose effectiveness for a month or two and so on. So my decision is to ablate (scheduled for tomorrow). I would do anything to get off medicine. Another unfortunate thing for me is flecainide gives me Left bundle block at 120 bpm and I feel it (symptoms). So this affects my quality of life as I am active and 52. My problems started at 36.

erich Wrote:
-------------------------------------------------------
> Would you mine me asking what
> your episodes were like when you first started
> getting them? Did you feel them, or were they
> silent?
>
> Did you really have multiple episodes per week
> for 15 years?
>
> Is your afib vagal in nature?
>

Hi,

yes my afib started at the age of 32. It has always been symptomatic but without too much dizziness. In the first 5 years or so only one or two episodes per month. Deteriorating over the years.

I definitely have vagal afib, mostly at night or during rest.

I don´t know how to assess what is happening right now under Flecainide. My life improved, that´s for sure. Total afib burden also is being reduced a lot (much more than 60%). But there are still 1-2 'longer' (about an hour) breakthroughs per month and relatively frequent brief runs of afib.

Am I too negative? Do I expect too much from Flec?

My Doc likes the way it is right now and doesn´t see any need to rush into an ablation. Of course, and I knew that before, he told me that an ablation will come sooner or later.

Why don´t I get an ablation now, then? Because with regard to my relatively young age, I think it´s not too optimistic to assume that I might wait another two or three years without risking too much structural remodelling and see what improvements in the procedure will come.

What do you think?

Dirk

I would focus hard on optimizing the drugs with just the kind of supplemental effort GeorgeN recommended Dirk.

I didn't catch where it is you live but if its in UK or EU then I too would make Bordeaux my top priority if and when the drugs plus good diet and supplements are not able to hold down the fort. You can get bye a while longer on two one hour or less episodes a month, but that is enough to shut down much any chance of allowing any reverse remodeling to take place and there will be some slow gradually structural remodeling likely taking place as well, though I doubt at breakneck speed. On the other hand with 5 years if aAFIB its hard to guess your total AFIB burden to date and know exactly what shape your heart is in but from your rather mild transient activity it sounds like you are clearly a more straightforward paroxysmal case and that's very much in your favor.

What not give the next 6 months to a full year following The Strategy Portocol found above in our AFIB Resources link along with your AAR drug regime and see if you can't get the monthly episodes much further reduced? Follow GeorgeN suggestions too with am Ginger etc, If not, and especially if the AFIB increase in frequency and/or duration then at least you will have a foot in the door at the best possible ablation spot you can arrange for yourself and won't have to reinvent the wheel from scratch, possibly at a time when the beast is really acting up again.

Best wishes.
Shannon



Edited 1 time(s). Last edit at 03/06/2014 06:21AM by Shannon.

Shannon,

I note that you and many others here advocate Bordeaux as the numero uno destination for an ablation for UK and EU a fibbers, but do you have any views to share on how Ernst and Schilling compare?

Whilst I accept that Bordeaux is definitely arguably the best option - and whilst money is obviously a secondary consideration to one's health assuming one has the necessary means, the fact remains that I can likely get Ernst or Schilling on the NHS and without travelling abroad. I'm currently figuring that if Ernst is circa 90% as 'good' an option as Bordeaux, then the the route I'll take as and when that time comes around.

Many thanks for all of your sterling efforts with this excellent forum!

Best regards,

Mike