Your experiences with "Pills in Pocket"?

With the good advice & feedback on the earlier thread "easing off of Metoprolol and Flecainide", I'm 24 hours "off" and actually I feel better, less foggy, less tired. So far so good on not slipping back Afib.

I'd love to hear some experiences and feedback from those of you carrying a "pills in pocket" strategy, how it went if you detected Afib and had to use it, if it worked for you and how long it took (and what you take).

And if you had to return to a "pills every day" scenario.

Thanks in advance, Frank in Florida.

Frank, I've had afib for 14 years. The first 4 months ended in a 2.5 month episode. I converted it with a 300 mg dose of flec. That took 20 hours. A month later had another episode that took 20 hours to convert. Subsequently, I've used 300 mg flec to convert every episode I've had. Generally I convert in a little over an hour but the range is 10 minutes (once), 25 minutes (once) and up to around 4 hours. I've gone as long as several years between episodes and, during a divorce, 4 nights in a row. After he 4 nights, I did start taking flec, 300 mg before bed, then the next night 200 mg, then I titrated that to 0 over around a month. I also started taking ginger powder spice (which I wrote up here and can find the link if anyone cares). Continued that after I was at zero mg flec (this particular month is the only time I've used flec daily). I then discovered I was over consuming calcium in the form of brie cheese, which I was stress eating wheels of. When I quit the brie, my control went back to my good pre-divorce levels.

Chronic fitness was my ticket to vagal afib (high altitude races). The other thing I did was take magnesium to bowel tolerance (as much as 5.5 g/day), a couple of grams of taurine/day as well as potassium citrate (2 g of potassium in this form - the weight of the compound would be higher).

I've never been on a beta or calcium channel blocker.

George

Wow thanks for all of the detail and insight George!

I'm trying it right now. The more I think about it, the more I'm convinced I have a pulmonary vein reconnection. Prior to my index ablation, I could reliably sense and episode coming on. There would be anxiety and PACs ultimately culminating in full-blown AF. Now, the breakthrough episode of two week's prior came without any warning whatsoever. I also notice an marked increase in PAC's, but without any warning or anxious feelings beforehand.

Since my ablation was a standard, anatomical PVI (vein isolation) I believe that when the electrical activity in the veins begins to "act up", I simply don't feel it because of the PVI lesion set. However "the dam", as it were, has begun to leak. So I just get blindsided by the PAC when it hits.

I'm resolved not to get nervous about it and just keep the meds handy, knowing that they will work and my AF is never high-rate anyway. I'll be sure to post updates as time goes by.

I should note, I've assumed the 20 hour conversion on my episode after the 2.5 month was due to "atrial stunning." In other words, the atria were still recovering from the 2.5 month episode.

Another aside. I felt I was doing really well out of rhythm in the 2.5 month episode. My rate was low in afib ~80 BPM. I could do a lot physically, though I subsequently decided that doing a lot while in afib was not in my best interest, and I no longer do this. In any case, after I terminated, I felt like I was "high" for a month. What I didn't appreciate is how degraded my system was, hence how good my system felt in NSR!

Thanks everybody for the info and experiences - George, re: "... out of rhythm in the 2.5 month episode. My rate was low in afib ~80 BPM", I'm newly into the Afib world, but my heartrate (bouncing) was from 80 to 155 BPM.

I'm curious how you were maintaining around 80 BPM, and how you knew you went into Afib, though BPM was reasonable?

Quote
FrankInFlorida
George, re: "... out of rhythm in the 2.5 month episode. My rate was low in afib ~80 BPM", I'm newly into the Afib world, but my heartrate (bouncing) was from 80 to 155 BPM.

I'm curious how you were maintaining around 80 BPM, and how you knew you went into Afib, though BPM was reasonable?

Frank, my 80 BPM was just how it was at the time. Now that would be an average as the beat to beat rate bounces all over. The 80 was from a Holter monitor study that was done. My EP said, " you are doing well out of rhythm, why don't you just stay there?." I said I had a Plan B which was a) cardioversion (which turned out to be chemical with flec), and b) I would try to stay in rhythm with electrolytes and he'd prescribe PIP flec. He said that was reasonable, and thats what I've been doing since (along with detraining from endurance competitions and training). I did not require rate control to keep my heart rate in the 80 BPM range, fortunately. Now, my afib pulse average is more like 120, but since I'm not out of rhythm very long, this is not an issue.

My afib is not symptomatic, however I always have a slight "feeling" or "knowing" when I'm not in rhythm. I can tell, typically in 4 or 5 beats, of sampling my radial pulse if I'm in afib. If I get the feeling I'm in afib, I sample my pulse. For years, I used a recording, beat to beat (r to r) POLAR heart rate monitor (posed here <[www.afibbers.org] and here: <[www.afibbers.org] The afib will show up there. Now I tend to use a Kardia device. However I've even used iPhone apps that use the light and camera as a plesmograph and display the pulse wave. Afib shows up on that, too. I can even just put my attention on my heart and feel the rhythm and tell.

Excellent and helpful info, thank you George -

If you might know this; if one had a heartbeat around 80, "moving around a bit but not crazy high", but the heartbeat was irregular as you described it - a bit shaky, not truly regular, but was not really shooting up in rate above 80 generally, is that still a stroke risk? Re: the classic worry of "pumping isn't occurring correctly, coagulation could occur"?

Stroke risk comes from the atria not contracting in an organized fashion. Rate is defined as the average ventricular contractions per minute. In AF, the atria are fibrillating at around 300 bpm. The average ventricular rate comes from the degree - which can vary - of “block” through the heart’s AV node, which links the atria and the ventricles. So, in an AF rhythm, think of the atria as spastic at 300 or so bpm and the AV node somewhat randomly transmitting those pulses to the ventricles. Regardless of the resultant average ventricular rate, the atria are not really pumping any blood and the stroke risk remains high.

Wow. Thank you for that great description Wolfpack.

Some of these great posts should be saved or added to the FAQ's...

George up above had some great descriptions, "what he can feel" etc re: going into Afib, and maybe it's a bit "not usual" to maintain around 80 beats yet be in fib, as you say Wolfpack "it's a big increase in beats" for the atria...

When I was 2 or 3 weeks out of the hospital and had been stabilized, on the Metropolol and Flecainide, I tried ending the meds and using my fingertip pulse meter (shows a "waveform" of the heartbeat as well on the display), I could clearly see even with that simple device my heartbeat "nature" had gone haywire, lots of random jiggy motions and some paused "no beat" representations on the little screen.

But the heartrate wasn't hitting 155 etc as it was in the hospital. To me, "it was back in Afib", I got on the meds again, now with Magnesium and Potassium and Taurine and I'm giving it a go hoping to continue Pill in Pocket, I'm thinking this little meter will be my spot-check (though the Karda might be more accurate), and I'll just spot check multiple times of the day (and George's points of sensing it / feeling it), any other advice for keeping tabs?

As for us all, I hugely want to avoid precipitating a stroke. Saw my Dad go through that twice. I guess I could entertain the anticoagulant route, as some insurance / prevention on this...

Quote
FrankInFlorida
With the good advice & feedback on the earlier thread "easing off of Metoprolol and Flecainide", I'm 24 hours "off" and actually I feel better, less foggy, less tired. So far so good on not slipping back Afib.

I'd love to hear some experiences and feedback from those of you carrying a "pills in pocket" strategy, how it went if you detected Afib and had to use it, if it worked for you and how long it took (and what you take).

And if you had to return to a "pills every day" scenario.

Thanks in advance, Frank in Florida.

I was taking Bisoprolol(2.5mg) + Flecainide(50+50mg) on a daily basis and it was disabling: shortness of breath, low HR and BP.
I talk to my EP and we tried the PIP stategy. When in afib, 100mg Flecainide and another 100mg one hour later if I hadn't convert. I never had to take the second 100mg, always went back to SN in about 1h.

The problem was that the PIP strategy was, in reality, a "pill on the bedside table" strategy. I had to take 100mg Flecainide about every night! So, I went back to the "pills every day" scenario: 50+50mg Flecainide.
I tried to get rid of the Bisoprolol, but it's dangerous, so I reduced to 1.25mg and I felt better, but still with 1h afib about two times/week.

Since my last "touch up" ablation procedure (one month ago), my average HR is a bit higher (60 -> 70bpm), which was expected, so I'm now taking 2.5mg Bisoprolol and 50+50mg Flecainide on the daily basis.

I would like a PIP startegy, but as I've still afib (or hundreds of PACs and PVCs) about two times a week...
I've soon an appointment with my EP; so, wait and see...

Silly question? Has anybody come across some research showing why the PV signals come through to upset heart rhythm? Or is it normal for the PV signals to come to the LA but something else has gone wrong?
Hasn't that signal got something to do coordinating HR with breathing?

Joe, IMO, nobody knows precisely why this happens; but if one day someone finds the answer... he's rich!
More seriously, it seems the reseach is essentially done by afibbers themselves.

Perhaps there’s a hereditary component to why some folks’ pulmonary veins develop autonomous electrical activity, but proof isn’t there right now. They are often a trigger for AF because they are distant from the heart’s natural pacemaker, the sinoatrial (SA) node. Normally the SA node depolarizes faster than all the other tissue in the heart muscle. Thus it dominates the pacing (heart cells are like dominos - one knocks its neighbor down, and on and on). When the errant activity in the PVs becomes “on par” with the SA node, you get the domino chain falling from both ends (or maybe even spots in between). The result is a mess as opposed to an organized flow.

I suspect the reason for the PVs in the left atrium being a common trigger is their distance from the SA node in the right atrium. The PVs “fire” before the pulse from the SA reaches them, and the two wavefronts collide. If conditions are ripe for it then this pattern sustains.

I uses Flecanide and Metoprolol as PIP for several years following my first ablation in 2009. Never had to use it for first 5 years. After that when I would have an eppisode I would take 100mg of Flecanide and 25mg of Metoprolol and would convert within an hour.

In 2017 I had to increase to 200mg of Flecanide and 25mg of Metoprolol to convert. In 2018 Flecanide no longer worked for me either as a PIP or taking it regularly ie 100mg flecanide adn 25mg of Metoprolol twice a day. This was following my second ablation.

(Original Poster here), everybody's feedback is so helpful on this. Reading earlier threads it seemed 300mg of Flecainide was "the standard" for PIP and I see others doing different amounts / different approaches here, very good to know.

Well I tried going off my 25mg Metoprolol and 50mg Flecainide (both twice a day) as I said I would, and was fine for 24 hours (meds still influencing no doubt), then, last night, went into fast fluttery heartrate, checked with my fingertip pulse - meter with the "waveform display", I'd gone from about 57 BPM controlled, to bouncing around at 87, then 111, then 93 etc, hit 132 once, and the waveform looked like an earthquake monitor needle LOL. Dang.

I decided to just "go on usual dosing" right away, and 2 hours later I'm about 50% improved, will keep an eye on it.

I felt dull and tired on the Metoprolol and Flecainide, is that just the way it goes (for some people) with these class of drugs, or are there alternatives that might be a potential improvement on the side effects of dull and tired? Thanks in advance -

The other anti-arrhythmic that is “safe” to start outside of the hospital is Propafenone (Rhythmol). Certainly something you can ask your cardiologist about.

Any of the other AARs will require initial dosing in the hospital for 3 days, as they can prolong what’s called the QT interval (ventricular depolarization to repolarization). That’s risky for v-tach which is danergous, hence the observation to be sure that doesn’t happen (about 1% of the time). Best to avoid those “higher power” AARs if you can find a working mix with either Propafenone or flec. If not, then “graduating” to the next level may be in the cards, but remember DO NOT let them go to amiodarone unless there is no other option. Or even ever. It’s the “nuclear bomb” of AARs but it has seriously nasty side effects. Like destroyed lungs. Bad stuff.

Thank you so much Wolfpack (and all here) for the guidance. Even as a newbie, studying through everyone's posts the last few months of the board etc, I feel like I know more than the cardiologist who sent me on my way out of the hospital with the prescriptions. It's almost criminal they don't inform better on the options, things that could happen, etc etc. Wow.

You’ll soon find out if you haven’t already that hospitals are the bar-none worst places to treat AF. It’s a nuisance to them.

You need to get at least a cardiologist and better an EP with a regular office and see them on an appointment basis. Things will get better.

Thanks Wolfpack, "upvotes" to you -

I have seen posts from others here who are on a maintain / control method of just Flecainide (rhythm control), vs. beta blockers, Motoprolol etc, which are "rate control".

I'm going to continue the magnesium, potassium and taurine, try to do well on whatever might be triggers for me, and (after a failure trying to end both Metoprolol and Flecainide), I'm going to try in a week or so easing to just rhythm control (Flecainide) and see if I can be somewhat stabilized with that, and hopefully less side-effects (tiredness, dullness).

It's a long but informative read on Wiki, but some angles expressed on this page seem to support what some others here have done, riding basically just on Flecainide / rhythm control. (I do give more credence to the opinions and experiences of those on this forum, much appreciated to get real world experience feedback).

[en.wikipedia.org]

The one caveat with that is that Flec can promote flutter which, being a more organized rhythm albeit still very fast, can transmit 1:1 to the ventricles. That is very debilitating. That is why flec is almost always prescribed with a beta blocker alongside.

I have had success myself with Propafenone stand-alone. The flutter risk, as I understand it, is lessened.

Good luck, and do be careful.

What a gauntlet we run... Very helpful insights there Wolfpack, and I hadn't heard of Propafernone, I see it has similarities (and differences) from Flecainide. [en.wikipedia.org]

We all suffer through our "data gathering experiences", I very much appreciate the sharing of knowledge, thank you.

Frank,

Would you say your triggers are vagal or adrenergic? See: <[www.afibbers.org] The reason I ask is that, while a beta blocker can mitigate the flutter risk that Wolfpack refers to (which is very real), it can also make it more likely for a vagal afibber to go into afib. My understanding is that Propafenone has beta blocking built in and may be subject to the same issue.

This does present an issue as if you are vagal, flec without a beta blocker may be your best bet, however this does increase the flutter risk. Perhaps you might find a dose of say 25 mg flec 2x/day might be sufficient and a lower dose would help mitigate the flutter risk.

Never easy choices.

Wow, thanks for pointing me to that George -

Reading that bit in the FAQ's, a) I'd lean towards Vagal, but I bet there are great "bits" from those with experience like you and Wolfpack and others that could expand that FAQ section / descriptions. I'll do more research for myself and try to bring more clarity there, again what a great avenue to be aware of and learn about that you brought up.

Thanks for all that you shared and suggested, and as you say, never easy choices. But info helps, thank you.

Just for your information...
I've tried flec alone, flec as pip, BB alone with flec in pip, BB+ flec daily basis, propafenone alone... and nothing at all.
I'm fine with nothing at all, but I'm more likely having lots of premature beats and, of course, afib with more severe symptoms. In this case, I've never tried letting things go and see if I'll go back to SR as quickly as usual. Always swallowed my pill immediately...

Great info Pompon, thanks -

Quote
Pompon
In this case, I've never tried letting things go and see if I'll go back to SR as quickly as usual. Always swallowed my pill immediately...

Subsequent to using PIP flec for the first time, I also have used it on every episode. My goal is to spend absolutely as little time in afib as possible, to minimize any electrical or physical remodeling.

Thanks George, and re: "Subsequent to using PIP flec for the first time, I also have used it on every episode";

It seems flec, by itself, is common as what to use for the PIP, some interesting feedback / choices just on this one thread here;

You have used 300 flec, and I've seen that mentioned in earlier threads I studied,

Pompon had success with; "When in afib, 100mg Flecainide and another 100mg one hour later if I hadn't convert. I never had to take the second 100mg, always went back to SN in about 1h".

(Just bringing into one place, the options people have done, tried), rocketritch up above says "Flecanide and Metoprolol as PIP for several years following my first ablation in 2009. ...when I would have an episode I would take 100mg of Flecanide and 25mg of Metoprolol and would convert within an hour.

In 2017 I had to increase to 200mg of Flecanide and 25mg of Metoprolol to convert. In 2018 Flecanide no longer worked for me either as a PIP or taking it regularly ie 100mg flecanide and 25mg of Metoprolol twice a day".

It's very helpful to get this context, to have some judgement from, Thanks -



Edited 1 time(s). Last edit at 05/07/2018 05:35PM by FrankInFlorida.

Frank, we're all so different, but as afibbers, we know that, even when in NSR for months, the awful thing is always waiting behind the door.
PIP is maybe the best strategy we could follow, because it allows us living "normally" most of time.
When having to take rhythm or rate drugs on a daily basis, we're feeling old and disabled.

Good points you made Pompon, and re:

PIP is maybe the best strategy we could follow, because it allows us living "normally" most of time.
When having to take rhythm or rate drugs on a daily basis, we're feeling old and disabled.

a) all of the info expressed has been great helpful context, b) I wanted to (hopefully transition to) PIP because I really feel like I'm on downers (sleeping pills) on my rhythm & rate drugs, so there I am "disabled" LOL... but I hate seeing the spiky pulse and high heartrate when returning to Afib, so for now, on the drugs I stay.

By the way, saw a cardiologist today, told them I felt weak and tired ever since a colon tumor removal almost 2 years ago now (my Afib wasn't detected until 6 weeks ago, on an EKG for a "touch up" tumor operation), they said rectal / tumor surgery often triggers Afib, some kind of reaction affecting (sympathetic with) the vagus nerve (triggering Afib).

While I was in for my process of anticoagulants & the process after the discovery I had Afib, the nurses said they pretty routinely had all kinds of operations (knee replacement, hips etc) where their next step would the the cardiac floor, because Afib triggered from the operation...

Thanks, George for mentioning the vagal tone. I was going to mention that as I found the metoprolol was not a good fit with my vagal afib. The PIP was the best approach for me and I did use 25 to 50 mg metoprolol to slow the HR down at the initial onset of Afib before the 150 mg Flecainide. Otherwise, the BB made me feel terrible using it on a daily basis. Eventually, I found the PIP approach rather than daily meds worked better for me.... (of course, until it didn't)... as is so often the case with afib.

Jackie

What a smart tip Jackie, to get the rate slowed down, "then" the Flecainide.

Maybe this is covered elsewhere as I study the materials, but what are clues towards "it's vagal (nerve) afib"; and what helpful things does one know, in how to address etc, if "it is vagal afib"?

Vagal AF is going to be more likely to occur at night, after a meal, or in the hours following exercise. It may be or become quite drug refractory. It is less likely to progress to persistent or permanent AF, although AF still begets AF.

Great data there Wolfpack, thanks, and if others also needed to see what "quite drug refractory" might mean, here's what I found, "resisting ordinary methods of treatment". Thanks, and I wish this forum format had a "like" or "thank you" button...

The 2 most important things as said before was to spend as little time in AR as possible...coupled with using as little drug as possible to accomplish that.
I have found the answer as for 2.5 years taking 2x150 mg ProPafenone then waiting between around 2.5 to 6 hours to covert.
Now i chew 3/4 of a PP pill and almost always convert between 30 to 60 min after swallowing.
If i do not covert in 60 min. i chew 1/4 PP pill and do so every 15 min. till i convert.
I have never gone past 1 and 1/4 pills or about 1 hour and 20 min. in AR before i am in NSR in the last 4 months or about 30 AR conversions.
I know this not the recommended way to take PP but as the 1st line of my post states that everyone would agree with.....it does both.
Its really no dif. then what happens in the hospital setting of them pumping you full of fast acting intrev. drugs str. into you veins hoping to slow you heart rate which makes conversion much more likely....this does the same as chewing it gets this drug into your blood stream faster than swallowing it and the half life of this is prob. half or less so you get the effects front loaded compared to the more consis. 8 hour effect if swallowed.
Tastes terrible and swallow quick with lots of water and stay up right till conversion as i have noticed personally lying down will make conversion harder but thats what i do and will continue this yes unorth. but amazingly effective method until i find my way out of this curse.