Just what I was afraid of!

So I haven't even been on the Propafenone a week, not feeling great the whole time and now flipped into afib again. I hope this isn't flutter, I don't know the difference and have never been told I had flutter but this is really fast and very uncomfortable. I was told to take another 225mg propafenone if this happened but I'm afraid to do that too!!! I don't expect you guys to give me medical advice, I'm just scared and alone.....again!!

Jill you'll get better answers "here" than mine.....but nearly everytime I have taken propafanone as PIP I end up in flutter......which tends to be a regular heart beat but rapid...........only good thing I have been told is that flutter cardioverts very well

"with ya sis" hate this crap

TP

Thanks, Tom. I'm so discouraged. I've never had episodes so close together. Doctors like to say episodes will get more frequent with time but that hasn't really been the case with me, going from 4 episodes in one year, down to 2. But now this? Someone posted on my other thread that they feel like a failure when they can't control the afib by diet and supplements and I guess I do too.Especially since I seemed to be on to something there for awhile and then bam! It sounds similar to your story!

Jill you are the most like my afib that I have ever read about......few episodes but stubborn and will not convert......only difference is that I have never gotten 2 episodes close together.............in 9 months still only have 2 episodes....one of 11 hours and one cardioverted.....weird that we both have 10 cardioverions

You and I should go to BORDEAUX ! I am really thinking of canceling my ablation for 8/21 as Hans says PVI wll probably not work and the Bordeaux web site says the same thing....that persstent fib comes from other foci than the PV...............great!

If you ever want to talk call me at my store 704 542 1444

Tom

Jill,

Your high rate and possibly flutter might have to do with low magnesium levels. My episodes increased when I stopped the IM shots. When I went back to the shots, my rate was lower when I was in afib. I also tried to cram in as much magnesium as possible. If your rate is high, you are going to have to get it down to convert. I needed to have my rate in the 80s or 90s before I would convert. Also I would try everything you can to become as relaxed as possible.

Tom, I am thrilled that you are considering Bordeaux---I didn't want to lobby but I don't think that you can go wrong with them. They really are the "Dream Team." 23 days NSR--nothing since days two and three.

Steve

Tom - yes. years ago, a number of people here reported they went for ablation and had to return for a second procedure for right side flutter ablation since the afib had masked the presence of flutter. Now they check (or should check) all of the potential problem areas and ablate what shows up. Jackie

I was just given instructions to up the dose of propafenone to 325 for the rest of the weekend to see if I convert. That will mean that by Monday, I won't be in the "safe" time frame of 48 hours to cardiovert. I'm sick to my stomach at the thought of coumadin, which is probably where I'm headed.

Jill,

The standard starting dosage for Rythmol-SR (time-release propafenone) is 225 mg twice daily. This may be increased to 325 mg twice daily or 425 mg twice daily. The standard starting dosage for Rythmol (non-time-release version of propafenone) is 150 mg 3 times daily. It is necessary to take the regular (non-time-release) propafenone every 8 hours because of its short half-life. Rythmol-SR (225 or 325 mg) will not work for the PIP approach as it does not release enough active drug quickly enough to increase your blood level to the point where conversion to NSR is possible. The usual dosage for the PIP approach (if not on Rythmol-SR) is 450 mg of regular propafenone for persons weighing less than 155 lbs and 600 mg for those weighing more than 155 lbs. I am not sure what the safe and effective dose of regular propafenone would be if you are on Rythmol-SR. My guess would be 300 mg, but you'll have to get your doctor's advice on this.

Hans

Hans, thank you for responding. I'm pretty sure it is regular propafenone that I am taking every 8 hours now, 325mg. Last night my rate got down to 100bpm or so but my blood pressure also dropped to 80s over 60s. Still in Afib and not happy about it!

Today, still in afib now 40 hours but....... blood pressure reading just showed back to my normal 110/80 and pulse now at its lowest yet at just under 100bpm. When I feel my pulse it seems pretty regular. Could I be "trying" to convert?

Jill,

It sure sounds like you are trying to convert. I was on 150 mg of propafenone three times a day a few years ago and it was pretty much ineffective for me.I had a somewhat successful ablation in Bordeaux 7 years ago, which held for four wonderful years. In hindsight I should have gotten a touch up there before coming back to Canada. Last summer I was prescribed the PIP which consists of 50 mg of metroprolol at onset and 450 mg of propafenone one half hour later. It usually converts me within 2-5 hrs. I have documented over 150 afib events since 1992, all of which where quite debilitating. My attacks would typically last between 15-26 hrs.I am very symptomatic and usually the first two hrs. after onset of afib are very uncomfortable. I can't really do anything physical without adding to the discomfort. What I do is, lay down in bed or on the couch and patiently wait it out.
Propafenone on it's own did nothing for me. But the metroprolol, propafenone cocktail seems to help dramatically. Usually within an hr. or so I get a real calming feeling going through me and I know NSR is close at hand.
It really sounds like you are having a real struggle here, and my heart goes out to you. Please be assured that in the right hands ablation is nothing to fear. The progression of treatment through ablation, even since I was in Bordeaux, is incredible. I think the calmer you can remain during afib will lessen its duration.
I would also suggest to your Dr. you try a combo PIP, as propafenone on it's own will most likely be ineffective..

All the best to you Jill,

Lou

Jill,

I've been gone all weekend, so I couldn't answer your questions to me, but most of them have been covered by now.

Hans is absolutely correct that Rythmol SR (or Propafenone ER) is not enough of a "burst" into your system to work as a PIP. Once you convert, It WILL be a better option to KEEP you in NSR than the regular (short acting). If you are taking a tablet, it is regular. If you are taking a capsule, it is the SR (ER for generic). From what you have posted, it sounds like you are taking regular.

I highly recommend the slow release version to help maintain NSR (once you convert). So much so, that I would (if I were you) insist on this. Since the time-release is available generically, the cost is now reasonable.

Fingers crossed now that your HR is below 100 that you will convert shortly

lisa
__________________________

So much of medicine is looking solely down the wrong end of the gun barrel, and that is really a pity for all of us---Shannon

Jill,

Lou brings up a very good point about a Beta Blocker. I take a very small dose of Atenolol, for marginally high BP (12.5 mg 2x day) with the Rythmol SR. I am Vagal, but this small dose and the Rythmol SR seem to be a good combo. So much so that about six months ago I quit taking the morning dose of Rythmol (all my episodes are late-night ones).

I attribute most of the success with keeping the Beast at bay is magnesium, but if you need to take a drug full-time, Rythmol SR is one of the better choices.

YMMV ;-)

lisa
__________________________

So much of medicine is looking solely down the wrong end of the gun barrel, and that is really a pity for all of us---Shannon

Steve- what kind of doctor gives your magnesium injections? not sure which doctor to approach about them?
Lou- I did take metoprolol with the propafenone last night. If I'm not careful with the metoprolol, my blood pressure drops pretty low, 80s over 60s.
Lisa- yes it it the tablet I'm taking and I will talk to the EP about the slow release as opposed to regular to keep me out of future afib. I'm wondering since I had an episode so soon after the cardioversion if the propafenone was actually responsible for putting me back in afib??? Lots of questions for the EP tomorrow.
EVERYONE- who posted, thanks so much for the support and advice. This forum is a Godsend!! I've got to tough it out another night before I get to see EP tomorrow, but the comments here really help me to feel I'm not alone in this.
Jackie- I want to be prepared to defend my "natural" anticoagulant plan of nattokinase, fish oil. Any tips? My current EP did urge me to stay hydrated and keep electrolyes up this weekend. She is the first doctor who acknowledged this was important!

JIll,

It's a very hard road to take when determining if a particular med is making things better or worse. Not only that, but is it the med, or the dosage, the combo of meds, or the time on the med? Or some other undetermined factor?

I wish I had the answer for you! Heck, I wish I had the absolute answer for myself.

lisa
__________________________

So much of medicine is looking solely down the wrong end of the gun barrel, and that is really a pity for all of us---Shannon

Have you read the studies on rate and rhythm control in the latest aFib journals? And the efficacy of various antiarrhythmia meds?

I was on a huge amount of Metoprolol b.i.d. to control my rate. By the time I finally got to a cardiologist that had a clue, it was one of the best and I was taken into hospital for three days and put on TYKOSIN (dofetilide) 500mcg b.i.d. and my Metoprolol reduced to 5 mg. b.i.d. I have been in NSR since December 2011 and hoping that my left atrium shrinks back down to make me a candidate for ablation.

In the meantime, if I don't mess up, the TIKOSYN seems to work extremely well for me.

Murray L

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Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.

Saw my EP today and she has upped my dose of propafenone to 300mg every 8 hours along with a half tab of metoprolol (12.5mg) This is the regular propafenone, not the SR. I'm supposed to keep this up until I hopefully convert. As Hans advised, I have a feeling this should have been the dose from the beginning. What I don't understand is why did my blood pressure normalize yesterday, and my rate drop down some (just under 100) if I wasn't trying to convert? It seems to have settled on this rate and I'm worried I can't convert at that rate. The EP says the metoprolol should lower my rate some without tanking my blood pressure. She also wanted me to take digoxin for the same purpose, but I refused. Would magnesium injections help at this point? I'm taking 600-800mg Bluebonnet magnesium which puts me on the edge of bowel tolerance.

Jill,

I'm sorry to hear that you didn't convert last night.

When I was first diagnosed, I was given IV mag and that converted me. My feeling is that it can't hurt. I don't know about the IM mag (for conversion purposes), but if your doc gives you the option of either, I would take them. Both, if it was me.

I would not take the digoxin.

lisa
__________________________

So much of medicine is looking solely down the wrong end of the gun barrel, and that is really a pity for all of us---Shannon

Jill,

So sorry - this afib is so frustrating.

For what it's worth, I also refused digoxin, based on what I read on this forum and after doing additional research. Both my cardiologist and EP tried to put me on digoxin, and I had my abstracts printed and ready for them. Before propafenone, they tried me on cardizem that only succeeded in making me dizzy and lightheaded and made my blood pressure drop too low. Rate control wasn't enough for me. I needed rhythm and rate control to stop that vicious three day cycle I was in.

Hope you convert soon and you can find an answer to this nasty puzzle.

Doreen