Atrial Fibrillation 30 years

[mansterman]

I've had AF for 30 years. It is probably genetic since my father had it (and died from a resulting stroke). I'm trying to avoid that fate, but it appears I've reached the limit of what non-invasive and invasive procedures can do.
     Over the years, I've taken nearly every heart drug on the market for up to 3 years at a time, as prescribed by the 8 different cardiologists I've had; Yes, I feel the fibrillation, so much so that it will awaken me if it starts during the night. And the longer an episode lasts, the weaker I become until, if they continue for longer than a week, I'm virtually useless but have to go to work anyway.
    I am usually in sinus rhythm only 2 to 3 days at a time, and only when I was taking Sotalol.  I've had two Pulmonary Vein Isolations, neither of which had any effect at all (first time while in fib, second time I was not in fib the day of the procedure but it was started up with drugs during the procedure). After the first procedure I went  31 days without an episode but they started up again after that and since have had the usual 2 to 3 days in rhythm, before it takes me out again.

I asked my family doctor if it could be the heart medicine (Sotalol) starting the 5 to 7 day episodes, and he called my cardiologist. After the two of them talking, they decided to put me on Amiodarone for a while to wean me off the Sotalol. But there was no mention that at some point they might take me off heart medicine all together (staying on Coumadin, of course) just to see if I'm in fib continuously, or paroxysmally, if it is any better or worse.

Consequently, I feel like I'm at the end of experimentation and anything that can be done for Atrial Fibrillation. I've holter-monitored, stress-tested, been photographed by MRIs, Xrays, Flouroscopes ad nauseum. Nothing indicates anything physically wrong with my heart, though in 1975 a family doctor said I had a "floppy mitral valve" but no doctor since has ever even mentioned that.  My heart doesn't seem to be enlarged, my cholesterol is low (both good and bad, thanks to Vytorin) I'm not grossly over weight but could lose 20 to 30 pounts (6'3" 232 lbs).

Any ideas?

Regards,

Alan

[va_tony]

I agree. Taking large doses of amiodarone for a short time is not a problem, or so I've read.  What counts is the dosage amount over time.  Side-effects are very common with long term usage of 400 mg doses.  Here's what one web site says:

"Amiodarone causes side effects in about 75 percent of people who take 400 mg or more daily. About 18 percent of them stop taking the drug because of these effects. Up to 9 percent of people who take this drug experience abnormalities in liver function. If you experience any side effects while taking amiodarone, contact your health-care practitioner immediately. She or he can decide whether it is safe for you to continue to take it.
More Common: Nausea, vomiting, constipation, loss of appetite, low-grade fever, photosensitivity, trembling or shaking, unsteadiness when walking, headache, tingling or numbness in the fingers or toes
Less Common: Odd taste in the mouth, vision disturbances, dry eyes, chills, dizziness, nervousness or restlessness, lowered sex drive in males, scrotal pain and swelling, slowed heartbeat, excessive sweating, insomnia, fatigue, unexpected change in weight, blue-gray discoloration of the skin
Rare: Lung inflammation, changes in thyroid function, bloating, changes in blood clotting, fibrous deposits in the lungs, heart failure, reduced heart rate "

Fortunately, it seems the odds of side-effects are much much smaller if one is at a dosage of 200 mg/day.

[va_tony]

"By the way, I am 6' 5" and 210 lbs.  I wonder if there has ever been a study relating height to propensity for AFIB? "

I've often wondered too if there was a connection between height and afib.  I eventually concluded there had to be.  Once after a stress test with a new cardiologist, I asked about my enlarged atria (diagonosed by my old cardiologist).  This new doc commented that, considering my height, the atria were only slightly enlarged.  He explained that the size of the atria is normally measured in the vertical direction and vertical atrial dimension is proportionately larger in tall people (or at least that was his experience after examining thousands of patients).  Since afib is dependent on atrial area (needed to allow the requisite number of reentrant wavelets to form), the larger vertical dimension makes tall people more susceptible.

I just googled your question and found that there was a recent study that verified that conjecture.

http://www.sciencedaily.com/releases/2006/04/060414005047.htm

[ReelEscape]

I have a 15 year history similar to those described above.  Went on Amiodarone 5 years ago and it did well for me until winter of 2006.  Amiodarone started to play havoc with my thyroid, it took them 6 months to figure it out while I was going through the worst period of health I have ever experienced.  Then amazingly, in July of 2006 I went on a hyperthroid med and my AFIB ceased, PAC's became rare ( a couple a month) and I got my life back for 9 months. Also switched from hyper to hypothyroid.  Because of concern about the thyroid, they took me off my thyroid med, and almost immediately, off of amiodarone.  First episode of AFIB came after 10 days, and have slowly increased in frequency, length, and strength.  The withdrawal period for Amiodarone is 6 to 8 months.  Today I saw my EP and he gets it about the thyroid relationship.  I am going to be an inpatient for a couple of days in early December where I will be started on Tikosyn, and if that goes well, probably back on a low dose of the thyroid med.  At my age (72) there is little to worry about if I am medicated into a slightly hypothyroid condition, and if that and the Tikosyn give me my life back, I will take it willingly for as long as I can.  By the way, I am 6' 5" and 210 lbs.  I wonder if there has ever been a study relating height to propensity for AFIB?  Good luck to you.

[maggiemag]

Just a note to say, Tony, that when you are put on Amiodarone, they put you on a higher dose for the first couple of weeks or so.....a loading dose.  Then when they feel you are loaded, they decrease the dose.  If I remember correctly, I was started on 400 mg to start, then lowered to 200 mg.   Many DO tolerate the drug and have success, or they wouldn't have it on the market!  I think we just tend to hear more about those who had severe side effects (like me!).

[va_tony]

"I asked my family doctor if it could be the heart medicine (Sotalol) starting the 5 to 7 day episodes, and he called my cardiologist. "

I just wanted to point out that sotolol is normally prescribed to treat afib. So it wouldn't be causing your episodes.  Rather, it's probably not working anymore and the afib is breaking through weekly.

In my case, my rythmol worked fine for 5 years and then started to fail in a similar mode...in my case I would be in NSR for a month, then drift into afib for 2 weeks continuously... then self-convert and experience NSR for another month or so before again drifting into afib.  Finally after 6 months of on-again off-again afib, I'm now in continuous afib.

Tony

[va_tony]

Alan

I'm sorry to hear about your afib dilemma.  After 30 years of afib, the bio-electrical character of the heart/atria remodel and afib occurs even in the absense of enlargement (afib begets afib) and is very difficult to treat. Are your certain your atria is not also enlarged as a result of the floppy mitral valve and being overweight?

I also have had afib over 30 years and was in continuous afib for several months about 5 years ago.  Rythmol, which has worked well for the last 5 years, has now failed me and I've been in afib for the last 6 weeks. I see my cardiologist on the 19th to talk about what to do next. In my case because of the fact that I am relatively asymptomatic and have an enlarged atria (5.5 cm), I've been told I'm a poor candidate for an ablation. I'll likely try another med (sotolol has been recommended) and another hospital cardioversion.  My cardiologist and EP both would prefer that I just give up and live with it, controlling the rate as necessary (mine is normally 55-75 even while in afib because of my med mixture and I function pretty much normally). I I have, of course, taken coumadin for the past  years. I should lose about 40-50 pounds -- I'm 6' 5" and 270 and 65 years old.

Getting back to your problem... my situation is different and so I can't advise from experience. But it seems to me you have 3 options.

1. Another ablation or mini-Maze procedure. If you do this you would need to go to the best -- a Cleveland Clinic or equivalent and consult with one of their EPs first to see what the odds are of a successful ablation or mini-Maze procedure.

2.  You can opt to have an AV node ablation and a pacemaker implanted to pace the ventricles. Your atria would still fibrillate but at least you could function normally. Has the EP ever mentioned this option?

3. Try the Amiodarone. This med is usually very effective in controlling afib.  I've resisted this drug myself because of its many side-effects. If you do take it, try not to go over 200 mg a day. Once over that (say 400 mg), the likelihood of side-effects is very high (while 200 mg seems safe). I think once you start you will need to stay on it permanently.


Tony