Trying Propafenone full time?

Last Friday, after PIP Profafenone failed to convert me, I was cardioverted for the 3rd time in 6 months. I think I'm in a contest with Tom P.! My new EP would like me to continue the Propafenone 225mg 2x daily and follow up in a month. I had so hoped the PIP would work for me and am discouraged to be on any drug full time. I've been working hard at optimizing magnesium and keeping potassium to sodium ratio 4 to 1. Hans pointed out that my potassium at 3.9 during my May episode, it would be impossible to maintain the 4 to 1 ratio. That is the lowest my potassium has ever been on tests, previously had been 4.7. Why would it drop so low now that I have been supplementing for so long? (over 2 years) I am uninsured and its difficult enough to pay all this out of pocket. I am having a basic blood panel done this week, but the Exatest is too expensive for me. Could someone please advise me on my supplement routine and offer any opinions as to how I can be more successful? Also, would anyone like to share your experience with being on Propafenone full time?
Magnesium- 600-800mg Bluebonnet daily (I teeter on bowel tolerance) just ordered magnesium oil but not used it yet
Potassium- 1080mg Now powder daily
Taurine-3000mg Jarrow daily
Fish Oil- 3000mg Carlsons soft gels daily
Co-Q10- 200mg Jarrow daily
Vit. E- FamilE 2x daily
D-Ribose- 10,000mg Life Extension powder daily
L-Carnitine-500mg Now daily
Nattokinase 100mg Nutricology Nattozyme 2x daily

Thank you for taking the time to read this and hopefully offer suggestions.I am so impressed with the knowledge presented on this forum, and I so want to be a good student. Some of the information is over my head but I try to study and understand.

Jill, about the potassium level, why not use a free nutrient calculator like the one at www.fitday.com to record all your food and drink for a few days to a few weeks until you can tell how much potassium in particular is provided by the foods you normally eat? Then you can use the potassium gluconate powder to bring it up to our government's recommended amount of 4700 mg each day, or you can just eat more potassium containing foods to bring it up to where it should be.

PeggyM

Peggy,
I need to try again to use the fitday site. I tried once and found it difficult, but I'm pretty computer challenged! Although I try to eat foods that are highest in potassium, the truth is I'm not really sure what that adds up to.

About K-rich foods, there are lists with amounts for each foodstuff, in these excellent K info sites:
[www.whfoods.com]

[lpi.oregonstate.edu]

[www.krispin.com]

I personally like the last 2 of these particularly.

All the best to you.

Incidentally, George N is a very good person to help you navigate Fitday. He is willing to do this, and is very good at it. I am not so good, being largely computer illiterate, as he is most definitely not.

PeggyM

Jill,

You may wish to try the Nutrition Data program [nutritiondata.self.com]. I use that myself.

Hans

Thanks Peggy and Hans, I'll work on that.

Jill, you asked for experiences of those who have been on Propafenone. There aren't too many of us here, compared to flec users, so here's mine.

When I was first diagnosed, my cardio put me on the short-acting version of it twice a day, and I had two "side-effects". It caused an altered taste when I drank water. Nothing else was affected. It also never seemed to last the full 12 hours. The last couple of hours, my heart felt unsettled, as if the dose just didn't last long enough.

When I brought this up with the doc, he said 3 x a day might settle my heart, but wouldn't do a thing about the altered taste. Instead, he put me on Rythmol SR 225. It solved both problems, and I recommend this. It used to be very expensive (over $500/month), but a generic version has recently come out, and I switched to it almost a year ago. I haven't noticed any difference, so I guess it's as good as the brand-name.

Over the past two or so years, my episodes have gone from a high of twice a week to twice a year. I don't think that it is because of the meds, but from being diligent with magnesium. About six months ago, I quit taking the morning dose, since I don't have daytime episodes. No change in AF frequency, so (at this time) the second dose (am) seems unnecessary.

I hope this helps, and if you have any specific questions, feel free to ask.

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

Hi Jill......if you and I got together "sparks might fly"! My EP wanted me on everyday Propafanone but I declined since my episodes are far apart, I think you might find it helpful at least for a period.......side effects a real possibility but maybe not too bad? like everything we are finding withafib, it's all an individual crap shoot...........you according to Hans may be the type of afibber I am, persistent with cardioversions......how many have you had now? my total is 10......hard to beat!

My question would be if propafanone does not work PIP then why will it work daily??

Tom

Hi Jill,

I've been on Propafenone for over three years now, and it has been a godsend for me. I developed afib when I had pulmonary embolisms (due to a previously unknown hereditary clotting disorder) after a long 9 hour flight. The doctors thought it would be a temporary thing, but the afib became more and more frequent until it was once every 3 days like clockwork around 10 at night, with a high heartrate. My episodes would last anywhere from 2 to 18 hours and then I'd self-convert. I tried the magnesium, potassium, (taurine gave me skipped beats), ate mainly fruit, vegetables, and fish for several months, because I was trying to resist taking the daily medicine. I finally gave in when I couldn't stand it anymore, and within a week and a half, the afib disappeared.

I still take magnesium and potassium on a daily basis, minimize my carbs. Drink at least one glass of low-sodium V8 everyday. I've had a few breakthrough episodes over the years - once I attribute it to baking and eating too many Christmas cookies (carbs). MSG is also a trigger for me. I try to limit my sodium as well, but then I always did, and my diet had been healthy prior to afib. Once I had hot and sour soup from a Chinese restaurant that advertised "NO MSG" and was in afib within one hour. The other time I had it I had climbed over 500 steps at a cathedral in Italy, and know in retrospect I wasn't hydrated properly.

I am on the extended release 325 twice a day. I tinker with skipping a dose occasionally but if I do it too many days in a row, I can feel the beginning warning signs of afib - skipped beats. I'm also on a very low dose of lopressor, and due to the clotting disorder, I'm a lifer with coumadin. We've flown long flights to Europe every year since I've started the coumadin - no problems. I pack the potassium and magnesium on all trips, and am still hoping to wean myself off the medicine one day.

Side effects - occasional tiredness in the early evening, and vivid dreams. Thankfully, no taste disturbances. My EP has me get an exercise stress test every year. We have good insurance coverage and since it went generic, I don't even have a co-pay. It works for me, and I pray it continues. Best wishes in your decision making.

Doreen

Lisa S- Thank you for sharing your experience. I'm a little confused about the difference between propafenone and rythmol, SR or extended release? And how do you convert from an episode if you do have one?
Doreen- Thank you also for sharing. I wonder how Dr. decides 325mg as opposed to 225. Weight based, or effect? And also, how do you convert now that you are on the daily dose?

Tom- last week was my 10th cardioversion so we are tied! I didn't want to be on any drug full time either but don't know what else to do. I do feel I've made progress with supplements and will continue as I feel this is critical. I have 2-4 episodes a year so nothing as bad as many here on the forum. I just can't get out of them! I am wondering as you said- if PIP propafenone didnt convert me, how will everyday be different? And how will I convert future episodes??

Hi Jill,

He started me on 225 tablets three times a day, then switched me to the Extended Release capsules once they went generic. I only have to take those twice a day. He said 225 was the standard dose. As I said, I do my own experimentation to try to knock the dose down. The few episodes I've had since being on the meds have lasted less than three hours. When it happens I immediately start walking around, drink lots of water and V8, and take a few extra potassium pills and magnesium pills. It's hard to describe but within 30 minutes I can feel my heart "calming down" and it takes a little while longer for everything to return to normal. My heart rate doesn't go very high when it happens (probably due to the lopressor). When I was having my episodes every three days before the meds, my heart rate would go up as high as 210. It was awful.

Before I went on propafenone, I felt like a failure every time I went into afib. I kept thinking if other people could "cure" it with diet and supplements, surely I could as well. I haven't given up hope that one day I may be able to wean myself off the meds, but I'm very thankful that they've been working thus far. Maybe propafenone just needs to get into your system for a couple of weeks for it to be effective. Hope it works for you.

Doreen

Thanks, Doreen. I went back into afib last night. Maybe you are right about getting enough in my system but I have a bad feeling this is flutter instead of afib.Trying to wait until a more "civilized" hour to call my doctor for advice.

My EP recently put me on 300 mg 2x per day Propafenone to try and control flutter episodes. I took them for 3 days, by which time I was extremely nauseous and vomiting, had loss of balance so severe I was falling from one side to the other and stumbling over my feet, my vision was affected, and I felt just plain weird. It was very unpleasant so I stopped taking them and informed my GP, who said not many people can tolerate the drug. The only side effect my EP mentioned was the bad taste in the mouth, which I didn't have, just the tip of my tongue felt numb!