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Should I start taking Flecainide daily?

Posted by Sam 
Sam
Should I start taking Flecainide daily?
April 16, 2018 06:56AM
Except for a few weeks 3 years ago I have only had episodes about 3 times a year. However from the start of February I've been having episodes every third night. I've used Flec as a PIP which converts me in 2-3 hours.

I'm trying to arrange for an ablation in Bordeaux next month but this number of episodes presents two problems.
1) The possibility of blood clots.
2) An episode leaves me quite weak the next day - not ideal for a two hour car journey; two hours waiting in the airport; two hours on the plane (which I hate!) and then getting to accommodation at the other end.

Used as a PIP I take Theanine, Magnesium & Potassium. Half an hour later 150mg Flec then 1 hour later another 150mg Flec.

I've tried taking 50 mg Flec twice a day for a few days but that didn't prevent an episode.

I'd appreciate thoughts on increasing this to 100mg Flec morning and evening.

Thanks

Sam

P.S. The really debilitating after effects of an episode - where I could do very little the day after and the day before have been really improved by doubling my Q10 to 200mg and adding 5 grams Ribose and 3/4 grams of Carnitine twice a day. Yesterday was the third day when I would have expected an episode during the night and I was feeling so much better during the day than before I started these supps that I was confident of an extra night Afib free. Sadly not. Afib struck on schedule.
Re: Should I start taking Flecainide daily?
April 16, 2018 01:03PM
Hi Sam - Keep in mind that when we embark on a regimen of increased nutritional supplements, they don't work with an aspirin-like effect. It can take as long as six months to replete cells deficient of nutrients; and depending on whether there is cell membrane damage or interference, it can take even longer.

On the flecainide dosing.... First, the obvious. We are all different for responses to dosing and Flecainide. However, when I did have to use it, I had varying results. When an event would begin, I would use metoprolol 50 mg to help slow the heart rate and about 30 minutes later, take 150 mg flec... wait for about 45 (+-) minutes...and add another 150 mg of the flec. In the early stages of my afib career, this worked very well. Later, when the events were often a-flutter, it did not work - thus the many cardioversions. I also tried using it twice a day, every day with mixed results.

As for the stroke risk factor, I relied on high doses of Omega 3 fish oil, nattokinase 100 mg 3 times a day, serrapeptase, and if I had an especially long- duration event, I'd add some pycnogenol.... mainly because I don't tolerate Rx drug chemicals much at all. Still don't. Many of my regular afib events lasted 18 - 24 and 30 hours and sometimes more.

I am sorry that you feel so debilitated after each event. I sometimes felt tired, but typically not debilitated. If I had, I would have gone much sooner for ablation.

Jackie
Re: Should I start taking Flecainide daily?
April 16, 2018 04:03PM
Sam,

I was in your shoes in 2012. Since 2004, I had relatively few episodes, mostly kept at bay with magnesium to bowel tolerance. Then I was going through a divorce and about 9 months in, I had 4 episodes in a row. A cardiologist suggested taking the flec daily. I did and started at 300 mg (my style - start with what works - may not be optimal or safest approach in this case). It worked the first night & I immediately titrated down to 200 mg. I would take this only at night, not doing the usual flec thing of trying to keep a relatively constant serum concentration of flec, as my episodes were nocturnal. I quickly added powdered ginger spice to my routine as Hans (the founder of this site) had written about it. As I describe here <[www.afibbers.org] I then started titrating the flec down and brought it down to 0mg over about a month or so. The ginger wasn't quite as effective as the flec as I'd have episodes every month or so, but I much preferred to take the ginger than flec (which I still used PIP when I did have an episode). Six or seven months later, I went back and reread the literature and realized that excess calcium could be a bad actor for me and my afib. I thought divorce stress was the cause of my increased episodes. However I'd been stress eating wheels of brie (literally). I looked at the calcium grams in the brie and realized they could be material. I quit the brie and immediately my control returned to it previous very few episodes.

In my case, the magnesium (or lack thereof) acts immediately.

George



Edited 1 time(s). Last edit at 04/16/2018 07:04PM by GeorgeN.
Re: Should I start taking Flecainide daily?
April 16, 2018 04:27PM
You sound like most of us and me. Flecainide worked great for me for 9 months then less effective, over the year that followed then came a few ablations and hope at the hands of an incompetent EP. I was put on Tikosyn no luck, Multaq, no luck etc. 7 months ago I went to Dr. Natale and sit here today afib free and off all meds. He gave me life back, I was highly symptomatic afibber with compromised ejection fraction.

Do what you have to to survive to see him if daily Flec works so be it. Go see him, don't beat yourself up over what you did, in hindsight it did nothing for me and in the end the only proven formula was Dr. Natale.
Re: Should I start taking Flecainide daily?
April 16, 2018 05:39PM
Looks like everyone mentions Dr Natale had a great success in ablation. I wonder if I should expect to be afib free for at least quite a few years if done by Natale? Down the road I think going to him is the only solution.
Re: Should I start taking Flecainide daily?
April 17, 2018 10:31AM
What are you waiting for?
Re: Should I start taking Flecainide daily?
April 26, 2018 02:43PM
Sam, regarding daily use of flecainide and titrating your dose upward, I've been down this road fairly recently. I learned that it took at least 36 hours (and according to literature as many as 4-5 days) for me to see results from the new dosage, so be aware that it can take time to be able to judge fairly. It's also helpful to take it according to a fairly precise schedule, so I've set an alarm on my phone to remind me to dose.

I saw a big difference each time I increased the dose, in terms of reduction of symptoms, so if your doctor is okay with the idea, I'd say it's worth a try. YMMV, of course. Good luck!
Karen
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