AF medications - Tikosyn not working now

I was diagnosed with AF in 2004. I have an enlarged atrium due to mitral stenosis. Through the years, I've been on several meds, including sotalol, cardizem, rythmol, toprol, and for the past year and a half, I've been on Tikosyn. After working like a dream for the entire first year, I've had four recurrences of AF this year. In fact, I'm back in AF, with heart rate of 130. My regular doctors are all out of town right now, not due back till week after next, so I went to another one in the practice yesterday. He told me to take an extra daily dose of toprol to try to slow down the rate, and come back on Monday for another EKG. Then he scheduled me to meet with EP in the practice on Thursday.

I had a consultation at Cleveland Clinic several years ago, but because of my atrium enlargement (4.7) I was told I was not a good candidate for ablation. I took that to heart (no pun intended) but I think my docs want me to have an ablation, given my medication failures.

I'm now tempted to request to go back on rythmol, since it worked for the longest period of time. I really don't want to have an ablation, having known someone who died after his third one, and knowing that so many people have to go back for aditional ablations.

Earlier the EP talked to me about pulmonary vein cryoablation as an alternative. Has anyone had this particular procedure?

Right now, I'm temped to drive myself to the emergency room seeking my fourth cardioversion of the year. As it is, I may have to wait a week or two to get cardioverted.

I'm so dejected that Tikosyn has lost its effect. It was working so well but no longer. If anyone has any miracle cure, I'm "all ears."

Mary

Hello Mary - I'm sorry you are having so much difficulty.

A number of afibbers using Tikosyn have reported the need to make sure their potassium levels are optimal. I believe it was Louise who was told by her EP team to watch her potassium levels while on Tikosyn. This would also include an evaluation of how much sodium (salt) you take in from packaged/prepared food sources, as sodium competes with and lowers potassium. Several afibbers on Tikosyn reported supplementing with potassium helped them stay in NSR.

As a start, you could see what a serum lab for potassium shows. While that's only a snapshot in time... could change in minutes or hours... it will let you know if you are out of range - either mildly or severely. If it's very low, then the AF is predictable.

The ideal test would be the Exatest. Do a search for Tikosyn as well as Exatest here with the search feature if you want to read the various testimonials on both topics.

Additionally, you need to be sure that your intracellular magnesium levels are also optimal because magnesium is needed inside the cells so that potassium can do it's job. Be aware that if you add too much potassium and your magnesium stores are low, the additional potassium can make arrhythmia worse. Magnesium has to be in place. Do you supplement with magnesium every day?

Most of us who use potassium supplements buy the NOW brand bulk powder (potassium gluconate) in one pound container from Hans' iHerb vitamin link at the top of the page. If you need it quickly, your local vitamin or healthfood store may have potassium citrate or potassium gluconate tablets.... they are only 99 mg/tablet so you'll need 6 tablets to approximate the 540 mg of a teaspoon of the powder. Prescriptions for sustained release potassium chloride can be obtained from your physician.

Another quick option is drinking the Low Sodium V8 vegetable juice which has added potassium chloride. Some people find potassium chloride is irritating to the stomach - so be aware. Check the label to determine the amount of added potassium provided in a serving.

Jackie

Sorry to hear of your TIKOSYN adventure and disappointment. What dose are you on? I am on 500mcg. b.i.d. and have been 99.9% NSR since starting it in December 2011. I have a follow up in August and hoping that my left atrium has shrunk sufficiently to make me a good candidate for ablation.... I do not think I am going to wait until my TIKOSYN becomes ineffective and wonder how many others have found TIKOSYN to have a limited lifespan of effectiveness. In Ontario, everything is on a waiting list when it comes to medicine, so one might be wise to get on the ablation waiting list sooner than later.... i.e. better to be on the list while the TIKOSYN is still working if a candidate. My LA size is/was 59/60 mm. When you say 4.7 I assume you are talking CM? My EP would be happy to do an ablation on me at 47mm. Although the smaller the better (i.e. the closer to normal the better).

I am one of those that find if I consume a trigger food, such as salt, MSG, caffeine, etc., I have 'palpatations' but my pulse is regular except for the skipped beats I can see on my pulse oximeter. Regular and evenly spaced like a clock ticking. I take a small dosage of Metoprolol (10mg b.i.d.) which I assume is for rate control, although my rate seems to remain in the 50 - 75 BPM range all the time (50 when I have just awakened from sleep and 75 when moving about). The only time it goes higher is with significant exercise and then only to about 90ish.

I have found over the months that Potassium is essential to avoiding these palpatations and that keeping it up with LS V8 and Potassium Gluconate (2 tbsp) dissolved in Polar Seltzer Water (no sodium) works well for me. In fact, if I have palpatations I take two rounds of the latter and it abates in about 20 min max.

I don't know what I will do if TIKOSYN stops working for me, so I am super careful with diet and supplementation; I wish you the best of luck in getting things under control and in position for an ablation. I am sure you have read the posts and are of like mind; I intend to go with the best EP's in the best facility possible. And fortunately for me that is 20 minutes up the road in Newmarket Ontario. But, like I said, you have to get in line in Ontario. Took me almost a year to get in to see them.

All the while my left atrium was expanding. From 50mm to 60mm in that period of time. And prior to that I had a quack cardiologist who allowed me to grow while he messed about with holidays, cruises, lectures and so on for 'big pharma' presumably.

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.

Oh, Mary,

My heart goes out to you. What a rough road you have travelled.

In addition to the nutritional advice given already, your thoughts about going back to a "previously failed" med before committing to an ablation make sense to me. I don't know if there are studies to support this, but if it worked for you before, and it hasn't been in your system for a long time, then maybe it will work again for awhile. The key word is "awhile" If it worked previously, and then stopped working, the chance that it will work permanently this time is pretty small.

I don't recall anyone here posting any kind of success with "rotating" AADs.

"I had a consultation at Cleveland Clinic several years ago, but because of my atrium enlargement (4.7) I was told I was not a good candidate for ablation. I took that to heart (no pun intended) but I think my docs want me to have an ablation, given my medication failures."

I am rather confused by this sentence, though.

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

About my potassium and magnesium levels, I haven't been monitoring I must admit, partially because I would have to get an Rx from my doctor to do the blood tests. When I was at the doctor's office this week, I did ask cardiologist about my magnesium and electrolytes from my last hospitalization and was told they were in the normal range. Is there an over the counter test I could get?

Jackie,
I am new to this website as of today & not sure exactly where to post this question but chose here due to your comments re:Tikosyn & supplementation....
I've been on 250mcg Tikosyn for one month. I read The Strategy today and ordered manesium, potassium, taurine, L-carnitine, Co Q10, and ribose. Obviously, I'm trying to do what I can to encourage NSR. My question: Is it safe to take these supplements with Tikosyn? I know that Tikosyn interacts w/ many other drugs, but I want to be sure I can safely follow the supplementation protocol recommended here.
Thanks so much for any input,
Katherine

Katherine - I'm sorry for not responding more promptly.

There have been numerous afbbers using Tikosyn along with the various nutrients suggested in The Strategy and thus far, nothing has been reported as an interference. Several people prescribed Tikosyn have also been instructed to take supplemental potassium to help keep those levels up to maintain NSR.

My thought is that for anyone starting out using nutritional supplements is to introduce one at a time so that should there be an incompatibility, the most recent addition can be targeted as the culprit.

Since magnesium deficiency is highly prevelent in afibbers (and the majority of the population at large as well), we advise starting with magnesium first. Follow the dosing instructions and increase or ramp up dosing slowly. The next will be potassium so you should hae some on hand. Gradually, you can branch out to include the others but I always think it makes sense to go slowly.

The Magnesium Absorption report may be useful to you as you begin.
[www.afibbers.org]

Everyone responds differently so we often say, "we are experiments of one."
Please ask questions. We are all here to help guide you.

Jackie

Hi again, everyone.

In regards to supplements in general, my EP's (two of the best in the world I am advised) went over my medication and supplementation list and gave me the green light with TIKOSYN. I am taking them all, especially magnesium and potassium. I would pass the list by your EP but am sure they will give you a green light.

Insofar as Magnesium and Potassium in particular are concerned, I cannot reiterate often enough or emphasize sufficiently the difference it makes, even with the TIKOSYN. If I take in any triggers, it is Potassium that seems to be my silver bullet.

I presently take about 3 - 5 mg. daily. Sometimes I get lazy in following my Potassium intake and with a wee bit of salt added to my intake I find I am having palpatations.... like aFib is trying to break through.

I keep POLAR brand seltzer water in the fridge at all times along with Low Sodium V8 or Mott's - both of which have about 1.5grams of Potassium in a 16 oz beer cup. I generally have two beer cups of LS V8 daily but like I say, sometimes I get lazy about it or find myself away from home. In that case, I take a 16 oz beer cup and put two or three heaping teaspoons of Potassium Gluconate in it and then fill it with Polar brand seltzer water. A quick stir, let it sit for a minute and the Potassium powder is completely dissolved. I chug it down. I find that this helps ESPECIALLY if I am having palpatations or what appears to be aFib breakthrough. Remember I am on 500mcg TIKOSYN b.i.d. It makes a HUGE HUGE difference and the palpatations are generally gone within 15 or 20 minutes and stay gone until I mess up again.

I am finding that I have mild 'nausea' early in the morning as of late and am wondering if this is associated with the TIKOSYN. Fuzzy head too.

My Dad is in hospital after taking a bad fall at 92 years of age and they have prescribed for him Potassium Chloride; his potassium level is 3.6. They are giving him Potassium Chloride 20mmol twice a day... (horse sized) tablets. I am wondering what this is the equivilant of in terms of Potassium Gluconate.... 20mmol converts to 800mg. Potassium Chloride I think. Any comments? I am thinking of bringing in some Low Sodium V8 for him to drink. He is on Ferosemide (water pill) 40mg twice a day to bring swelling down. Not to outguess the doctors of course, but can someone explain to me the difference between Potassium Chloride and Potassium Gluconate Powder.... and the difference between 20 mmol twice a day (what is that in mg?).and 800 mg?

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.