George N

George:

When you were in AF for 2 1/2 months and went back in NS rhythm did it happen all at once or was your heart in NSR off and on until your heart finally stayed in NSR?

Liz

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Elizabeth
George:

When you were in AF for 2 1/2 months and went back in NS rhythm did it happen all at once or was your heart in NSR off and on until your heart finally stayed in NSR?

Liz

Hi Liz, it was terminated with 300 mg flec. That and the next episode a month later both took 20 hours to convert. The EP did not think the flec would do it and initially told me to take it, then said no for me to schedule an electro-cardioversion. He prescribed me the flec as PIP for later. When I got the script filled, I took it as an experiment and it worked. These two conversions were my longest. Most on flec thereafter took an hour or two with some going 4 hours. Before the 2.5 month episode, my non-flec conversions took 6-9 hours, as I recall. Some of these I converted with exercise. Given that I'd been out of rhythm for 2.5 months, I'm not surprised it took 20 hours. In retrospect, I think the episode a month later took 20 hours because there was still "atrial stunning" from the first episode. After the 2.5 month episode converted, I immediately began my experiments with supplementation that led to what I use today. That was part of what I'd proposed to the EP. But yes after the episode converted, I was in solid NSR for a month till the next episode. After that, there was a 3.5 month gap till the next episode, which was provoked. I say that as I'd led a scout group on an outing to construct snow caves. I was carrying about a 70# pack and breaking trail with snowshoes in 3' snow, then spent hours constructing a 3-person snow cave most by myself as the others didn't help much. {edit - I should note this was a classic vagal trigger - I went into afib in my sleeping bag in the cave around 11PM - took 300 mg flec, washed down with icy water from my water bottle - converted in 25 minutes} After that I had another month gap. Realized for the snow cave and the one after, I'd neglected to replenish my taurine supply. When I added that back in, had a two year period of NSR. That was ended when I thought I was "cured" and stopped all my supplements. Had afib within 48 hours, and I think it was 24 hours actually.

As an aside, I thought I was doing really well out of rhythm and it was not impacting my body. After i converted the 2.5 month episode, my body felt "high" like from a drug high, for nearly a month. I'm guessing it was the body's relief for not being in afib.

George



Edited 1 time(s). Last edit at 01/09/2020 10:52PM by GeorgeN.

Thank you George---You took Flec. without being in the hospital initially, which I guess that is the way the drug is prescribed. When I got episodes and went back into NSR my AF was very easy to feel. Now after being in Permanent AF, it is hardly noticeable, when I sit or don't do a lot of walking or physical things , I then take my pulse and it feels normal. I have a machine that takes my BP, and if I am in AF it will show it. Many times it doesn't show that I am in AF. Is that the way permanent AF acts---my EP prescribes Propafenome which doesn't do anything so I quit taking it, perhaps the Flec would have converted me.

I have been reading all the posts about CA. and T4, I was eating cheese as a snack quite often but that was about the only Ca. that I ate, so I thought it would be ok. I quit that habit about a week ago and added Vit D, I had stopped Vit. D because I thought it was giving me Aura Migraines, but I think it was the cheese as I havn't gotten any since stopping it. I used to take Vit D and when I got episodes of AF I always converted. It wasn't just not taking Vit. D my Thyroid went hyper and that is what made me go into permanent AF.

I hope the shock treatment puts me back into NSR and I will keep a closer eye on my Thyroid, also keep taking the T4. On my last visit with Dr. Brownstein my parathyroid hormone was just a little over the lab values, it sometimes is a little high but mostly it is ok, within the lab values.

Liz

iMHO one should get two medical opinions before taking 300mg flecainide. I can’t stress it enough from experience of near death foolishness. My trusted EP said no because I didn’t weigh enough for the 300mg dose (what is it? Around 150-160 pounds for 300mg dose?) so I saw another EP who said try it. I had witnesses in consultation room him saying it was ok for my weight (I weigh in one teens) I read his typed report after I went to ICU and he wrote a complete opposite comment on how he was against it to save himself. So the moral of this tale is if you trust your EP and he says no (ie Eliquis or flecainide or any other black label drug dosing) listen to his advice and don’t shop around to get the advice you advocated. FYI, I heard about the 300mg dose here.

I ended up in cardiac ICU for 3 days and I was told I was lucky to have survived from the 300mg flecainide dose. I never had a pvc beforehand. I feel it messed me up.

Another bit of flecainide advice- get the flecainide serum test. It determines the flecainide level resulting factor from your liver enzymes metabolism of the drug. (Cytochrome P-450 (CYPs) are involved in the metabolism of drugs, chemicals and endogenous substrates). The level could be affected from your other meds you take that could act as an inhibitor (lowers level of drug in your blood stream... or the opposite (inducer) that would then increase the levels of the drug such as flecainide, in my case, as an example.

An enzyme inhibitor is a molecule that binds to an enzyme and decreases its activity. By binding to enzymes' active sites, inhibitors reduce the compatibility of substrate and enzyme and this leads to the inhibition of Enzyme-Substrate complexes' formation, preventing the catalyzation of reactions and decreasing (at times to zero) the amount of product produced by a reaction. Enzyme inhibitors increase the drug level and also occur naturally and are involved in the regulation of metabolism (Wiki)

The flecainide serum test is done exactly 11 hours after prior dose.

"Now after being in Permanent AF, it is hardly noticeable, when I sit or don't do a lot of walking or physical things , I then take my pulse and it feels normal. I have a machine that takes my BP, and if I am in AF it will show it. Many times it doesn't show that I am in AF. Is that the way permanent AF acts"

Liz:

If your AFIB is rate controlled, and not a very high rate, then it may feel relatively normal, as far as the spacing between beats. BP machines are not accurate for detecting AFIB, that is relatively evenly spaced. It has been my experience that after the 1st 12 or so hours, an AFIB episode becomes less noticeable as time goes on. This is mainly because of the rate-control drugs I take, but their appears to also be some adaptation process my body goes through as the episode progresses in time, and the Hormonal response to the initial AFIB may subside.

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susan.d
iMHO one should get two medical opinions before taking 300mg flecainide. I can’t stress it enough from experience of near death foolishness. My trusted EP said no because I didn’t weigh enough for the 300mg dose (what is it? Around 150-160 pounds for 300mg dose?)

The maximum dose for flecainide is 200 mg for those weighing under 70 Kg (154#) and 300 mg for those over. At the time I weighed around 200#. I concur that flec is not to be trifled with. Certainly it is contraindicated for those with structural heart disease (when I read this paper in 2007, I decided to make my metabolic health an extremely high priority). For other risks and prescribing issues, see here. My 30 something son-in-law was recently prescribed flec on-demand. The cardio's instruction has him take 25 mg metoprolol initially. Then he's to wait 2 hours, because he has been able to convert most episodes on his own, so he his to try to convert on his own, then take 100 mg flec if not converted, wait another hour and take an additional 100 mg flec if not converted. He weighs 155#'s so that is his limit. He's used it once and converted after the first 100 mg. I also suggested he get a 12 lead ECG after his first use and send to his cardio for analysis, but that did not happen this time. A suggestion was made that he could get a 12 lead at many fire stations. I contacted a firefighter/paramedic I know and asked about this. She suggested contacting the station and arranging the ECG prior to needing it.

On the event of afib I was instructed to take 3 x 100mgs of flex, 20 minutes apart.

Anti-Fib said:
{
If your AFIB is rate controlled, and not a very high rate, then it may feel relatively normal, as far as the spacing between beats. BP machines are not accurate for detecting AFIB, that is relatively evenly spaced. It has been my experience that after the 1st 12 or so hours, an AFIB episode becomes less noticeable as time goes on. This is mainly because of the rate-control drugs I take, but their appears to also be some
adaptation process my body goes through as the episode progresses in time, and the Hormonal response to the initial AFIB may subside. ]


My pulse does at times feel normal, I guess that is why there are a lot of people that have AF and don't know they have it. But Anti Fib, I am not taking any rate controlled drugs, my heart rate runs in the 60s and 70s. I only take my Thyroid drug and Xarelto..

Liz



Edited 1 time(s). Last edit at 01/10/2020 01:46PM by Elizabeth.

Well I didn’t weigh enough (one teens) to take a 300mg dose of Flecainide. I was foolish to not listen to my EP who said I didn’t weigh enough when 200/day was not working. I got a second opinion that put me in the ICU for 3 days. I would never had thought of 300mg if I didn’t read the hundreds of posts from those taking 300mg pill in pocket. That is the reason I posted. If you weigh less than 154 pounds don’t risk your life by taking 300mg. It’s a black label drug. I almost died according to many. As GeorgeN said, it’s not a drug to trifled with.

That is the reason I posted. If you weigh less than 154 pounds don’t risk your life by taking 300mg. It’s a black label drug. I almost died according to many. As GeorgeN said, it’s not a drug to trifled with.

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susan.d

I also take flecainide (75 mg x 2) and weigh less than 154 lbs. I have used flecainide for conversion a couple of times but it only took an extra 50mg dose and my EP has never suggested that I take 300 mg to convert. Do you mind telling us what the symptoms of the flecainide overdose were? Just want to be on the alert.

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Daisy
That is the reason I posted. If you weigh less than 154 pounds don’t risk your life by taking 300mg. It’s a black label drug. I almost died according to many. As GeorgeN said, it’s not a drug to trifled with.

I also take flecainide (75 mg x 2) and weigh less than 154 lbs. I have used flecainide for conversion a couple of times but it only took an extra 50mg dose and my EP has never suggested that I take 300 mg to convert. Do you mind telling us what the symptoms of the flecainide overdose were? Just want to be on the alert.

Susan told her story at the time, here.