amiodarone; coumadin questions

[hensylee]

To everybody: Well, I finally have a valid question to ask of you who have had afib and are being dosed for it.

My brother has been afibbing for some time and was put on Cordorone 11/99 but nobody ever checked his blood for damages caused by it. His walk changed (zombie-like), his mind got fuzzy (ier), vision affected, all side effects of this drug were his - reported all to dr who just never picked up on what we were telling so bro has been "poisoned" on a daily basis since 11/99 (dr even said so). Last time he was in ER (around Easter) a new dr was brought in who found the problem and discontinued the amiadarone but said it would take mos for effects to leave system.

He was also months ago put on coumadin in preparation for cardioversion which never took place.

Now he's afibbed again and quite badly (pulse high constantly with orthostatic hypotension.

He is now admitted to hosp w/electrophysiologist. Nurse tells me that this dr uses both meds for this problem.

I already have Dr Rich's take on these meds, but would appreciate hearing personal stories from any of you who might have this prbl and your results. My bro does not have any valve difficulty - just heart. thanks, all

 

[Mike in Florida]

A-fib

A-fib

Hello Hensylee!
Sorry to hear about your brothers problem with
a-fib and amiodarone. I've been fighting a-fib
for about 5yrs. now, and my heart disease (valves
damaged from rheumatic fever), is the cause of
my a-fib. I had my aortic and mitral valves
replaced with St. Judes mech. valves in 1998
hoping this would end my a-fib,and get my heart
pumping better.Heart works good, but a-fib
continued on. I've tried all the latest, greatest
drugs, and I was always told that amiodarone was
the "last resort drug". Has your brother had any
thing besides amiodarone? There are many drugs
with fewer side effects. I've spent alot of time
researching a-fib, and learned alot from websites.
A good site is the Afib Message Board at http://
members.aol.com/mazern/post.htm Also try a
great support group at http://groups.yahoo.com/group/afibsupport
There is a a-fib database at http://www.dialsolutions.com/af/database/index.
html And for a bunch of info on amiodarone go
to http://www.discoverynet.com/~gcox/drug/
amiodarone-2.html The cardiologists and EP's
want me to give amiodarone a try, but I had to
just say NO. I'm chronic a-fib now, but handling
it well until I decide to do something about it.
If your brother is fibbing on a regular basis
he needs to be on Coumadin regardless of
cardioversion. Some of the newer drugs for a-fib
are Betapace(sotalol),and Tikosyn(dofetilide),and
they seem to work for many people. Hope you and
your brother find a solution, Good luck to you.

 

[Nancy]

a-fib

a-fib

Hi-

My husband Joe has a-fib. He had a pacemaker put in for a low heart rate and it also took care of the a-fib for the most part, at least every time the Dr. checks him, he's in normal sinus rhythm.

Nancy

 

[hensylee]

Thanks, Nancy. My brother isn't a candidate for pacemaker because his pulse rate is too high and a pacemaker is to keep the pulse rate up to a certain number of beats per min. Right? I think the good pulse rate is about 80 and he was 137 Fri (a week ago) and 129 yesterday. Today from his hospital bed he said it's down to 92! Go figure. I am sure he will be put on coumadin but the other one is scary, especially in view of what has happened to him in past 1 2/3 yrs he's been on it daily!! He was simply but definitely dying in front of our eyes. It might've worked if his liver, etc had been watched but wasn't.

 

[hensylee]

Mike in Fl, thank you so much for your answer. I am printing all the answers so that I will be well armed when we see my bro's doctor because it is really a scary thing to see him the way he has been for some yrs now. I will research the sites you posted to be more educated. Aside from this, my nurse cousin nursed in cardiac unit in Methodist in Houston for yrs so she will help with all this while she is in Fl for the summer.

BTW, do you know how I can print directly from here just one post at the time, or two without copying and pasting elsewhere??

 

[Nancy]

Pulse rates

Pulse rates

Hi Hensylee-

Well, we should get your brother and Joe together. Joe's pulse rate was 40 and possibly below. That's why he passed out 3 times and had to be rushed to the ER. Thank God I was there for all of those episodes.

One of those times I couldn't get a pulse.

The flip side is that at times his heart would race, like your brother's. So they have him on beta blockers to slow the heart rate, and the pacemaker to keep the rate within normal bounds.

Heart problems sure do run the gamut don't they?

Best wishes to your bro. I'm sure there is a good combo. for him. They found the right one for Joe. Now if only they could get that valve fixed.

Nancy

 

[hensylee]

Richard's last emergency was when he went into the grocery store, managed to sit, but upon rising, the world disappeared and he'd manage to get back in his chair. He must've finally passed out because he woke up with his head on the shoulder of the man sitting next to him (who immediately jumped up and left). Guess they thought he was under the influence.

What combo is Joe on for the a-fib. I'm trying to get all info available to dump on his electrophysiologist because amiadarone nearly did him in and don't want him to have it back. Thanks

 

[Nancy]

Arrythmia problems

Arrythmia problems

Hi Hensylee-

Well, first off, I said that Joe was on beta blockers, but he is actually on Tiazac which is a calcium blocker, that slows his heart rate, and he has a Guidant pacemaker to keep it from getting too low.

This combo. has worked perfectly. Couldn't be better. He hasn't fainted and neither has his heart rate been out of control on the high side. Also his a-fib is under control.

With his mitral valve in some difficulty, there has been ample opportunity to give this combo. a real test. I'm sure he would have landed in the ER as a permanent resident and we would have had the EMTs living at our house.

His cardiology group has an arrythmia cardiology specialist, Lahey Clinic trained, and that was his recommendation.

Nancy

 

[strayze]

I hope this first post to new forum works. I'm not good on following new directions.

I'm a very long time Afibber- - 37 years. I'm off antiarrhythmics for good. They (several, including amiodarone) were toodangerous for me and were proarrhythmic. Afib is something that is hard to treat. And the antiarrhythmics don't work that well. Remember Bill Bradley's problems going in and out while he was campaigning in the primaries last year? And it's considered to be a benign arrhythmia if one is on Coumadin (warfarin) or other blood thinner, for atrial fibrillation predisposes to the formaiton of blood clots in the atrium (upper heart chamber).

I'm doing so much better off the antiarrhythmics poisens (that's what my electrophysiologist calls them). I'm on a beta blocker to slow down the rate to 90 or under. It's worse going in and out of Afib (and in my case also dangerous ventricular arrhythmias) than just being in Afib. After 3 days in Afib my body doesn't know that I'm out of Afib.

From my personal experience, I found being on diuretics was a bad combination with going in and out of Afib. I "dried up" so much that my blood volume was quite low, causing postural hypotension to the point of blacking out upon change in body position from lower to higher. Also when dried up like that the effects of Afib are very noticable, because the heart is ineffectively trying to push blood around, and it's harder to do when there isn't that much to push around.

Another treatment for Afib for us diehards who don't respond to electoconversion or antiarrhythmics, is ablation (of the sinus node I believe) and installation of a pacemaker. I have that option but have not chosen it yet. I'm doing so well now (after the arrhythmics stopped working 5 years ago) that I somehow cannot face right now an elective procedure (after a string of nonelective surgeries this year).

There is a site where people talk about their Afib. It's calld the lone atrial fibrillation bulletin board. Can be found by typing in lone atrial fibrillation in Yahoo. This is for the lone Afib- - those who otherwise have a healthy heart.

 

[hensylee]

Strayze, thank you so much for your other post this am. Took it w/me to the hosp, with Dr Rich's post and left a note for bro's dr to NOT put him back on amiadorone. But expect they will put him on coumadin, but I think he handled that alright. His hypotension has been the same as your, however, while he is in hosp it is back at a normal (and above) #. ?? They were doing a fasting blood sugar today when I got there. Did an ultrasound yesterday. We'll just see what happens next.
I also took along posts from this site.

At least the dr will know I am keeping track!!

Thanks

Penelope sends regards to little Strayze

 

[strayze]

Hi Hensylee,

I would hope that amiodarone would not even be considered. It's too darn toxic for a benign arrhythmia. Some folks are very aware of their Afib. DrRich addressed those conditions where he would prescribe amiodarone for an arrhythmia that is annoying. I certainly annoyed by my Afib early on, but it wears with you after a while so that a little "clatter" isn't noticed- - actually it became my friend, for I knew my heart was still working, albiet in a funny way. Blacking out is another problem, and of great concern . This could be from a dangerous arrhythmia, or from some of the otherwise OK drugs that cause hypotension- - and the drugs have to be changed. Anyway that's my experience. Many people don't take those blacking out spells seriously enough. They are well beyond annoying.

Our little 6 yr old Strayze died in the cat ER and hospital after a mysterious 7 day illness for which he got better then plunged into neurologic problems and coma. His blood chemistry was normal for all of the 7 days, and he partly recovered for three of those days. I'm very sad and will miss my little darling boy puss.

STRAYZE

 

[hensylee]

Strayze, I am so sorry to hear about Little Strayze. Am sure you miss your little one. I know how much Penelope means to me and my heart would break if I lost her. My little family consists of 4 pets and all are so important. But Penelope is special because she adopted me instead of other way around.

Richard is having cardioversion this am as we speak. This cardio section is not putting anything off - what a nice change to see some action after all these years. Hope it works. If not, ablation might be next? Richard is going to be on a blood thinner for the rest of his life, but it is not coumadin. He couldn't remember the name of it but will post it here when I find out.

 

[strayze]

Hensylee,

I'm glad that you've found a different environment in the new further away hospital. It's amazing what changing systems can do.

I believe that what's next if cardioversion does not work or is only temporary, depends upon other aspects of Richard's heart condition. DrRich I'm sure can fill us in.

In my case because the cardioversion lasted only one week, I'm in permanent atrial fibrillation, which is not all that bad for me as the rate is controlled with atenolol (Tenmorin) to keep it under 90 bpm resting. There are other drugs that can lower rate. Nodal ablation + a pacemaker is an option, that would bring back the nice slow rythym. I've not opted for this at the moment, really hoping for an improvement in other ablation procedures.

Atrial fibrillation is a very common problem without a good solution. Fortunately, it is a relatively benign problem, provided that one has anticoagulation therapy. Actually, most of the antiarrhythmic drugs do not work for Afib all that well anyway, and the side effects can be horrendous. It is said that some cardiologists in trying to stop Afib bring on even greater problems. I actually had a few years of good pharmacological control of my Afib, preceded and followed by year of terrible control, going in and out of Afib, and finally even dangerous ventricular arrhythmias induced by the proarrhythmic antiarrhythmic drugs I was on. My lack of adequate routine thyroid replacement medical care compounded the problem. (I have no thyroid for 37 years- - and have Afib for 37 yrs- - original episode from dangerous thyrotoxicity).

I hope that Richard's FULL thyroid panel is done.

There are some ablation procedures, one is called the MAZE procedure. I believe that DrRich discusses these in one of his articles. From what I can tell, these procedures are done like catherization with testing for the "active" heart conduction sites, and are still pretty experimental and not in general use. There are certain nonnodal ablations that work very well with specific supraventricular arrhythmias, but not Afib. I've not really kept up with the lastest. Will ask my electrophysiologist in October.

That is my experience. What I don't know is how Afib interacts with other heart problems, which I hope is not Richard's case.

One of my problems in medical care for my Afib was that it was done for 35 years by an internist, rarely with consultation with a cardiologist, and the existing cardiologist/electrophysiologist was not adequate. This was a mistake. An internist is not really up on all the antiarrhythmics, the FDA discussions for such, and tend to be 10 yrs or more out of date (as was also the cardiologist). Coupled with the thyroid problem with the many ups and downs, which should have been in the hands of an endocrinologist rather than an internist, I unknowingly made some bad treatment decisions. I was unable to judge the opinion of the cardiologist at that time. Thank goodness for the rapid exchange of up to date medical information, and for DrRich for keeping us on the right track re: adequacy of treatment. Had I known then what I know now some of those years would not have been lost to antiarrhythmic induced illness.

I hope all goes well with Richard in his cardioversion today. There will be "burn marks" on his back shoulder and his chest, not unlike a sunburn. Mine had the shape of an iron. I was said to be conscious during the procedure, but don't remember a thing.

We're leaving today to help with the annual horseshoe crab count in Delaware. We hope that they do not dwindle as their habitat is being invaded by people. Their blood is used by the medical industry to detect bacteria/toxins.

 

[hensylee]

To all: Richard had his cardioversion. Nurse says he is in complete rhythm and bp is normal. He has been up, had a shower and says he feels fine. Just pray the cardioversion holds. He will be on coumadin plus a drug called Rhythmal (for the rest of his life) - never heard of it before and maybe it's new. Thanks to everybody for all the information. Believe it or not, the dr wouldn't even look at it and said to take it to his right arm, Amy. Oh, well, he was just back from vacation so very busy, I am sure.

Strayze, enjoy your trip and study up on all those bugs so you can tell us.

God bless

 

[Nancy]

Great news Hensylee

Great news Hensylee

Wonderful news about your brother. Hope things stay on track with the heart rhythm.

Tell him best wishes.

Nancy

 

[strayze]

Hensylee,

Richard will have to be in the hospital for awhile being monitored while on Rythmol (propafenone), the antiarrhythmic. This is to monitor for proarrythmic episodes. Like other antiarrhythmics, propafenone will not increase his life span, but can increase his comfort if it works. The pharmacology info is at http://www.rxlist.com then type in rythmol and you'll get more information than you ever wanted. It's likely that Richard has no structural problems with his heart if this drug is use.

You're right about his care in that no time was wasted for the cardioversion + antiarrhythmic + observation.

I hope all goes well.

STRAYZE

 

[Bill Hall]

Hi Hensylee - I had the afib for 1 month after surgery. My heart went back to normal rhythm using the amiodarone. I took the amiodarone for an additional two months. Now I have discontinued using it, hopefully for good. I heard about some bad side effects from a post a long time ago and was anxious to get off. I would probably use one of the alternate drugs if my heart went back to afib. Glad to hear the good news about your brother. Please keep us informed about the afib condition since it is important to all of us and we care.

 

[Gillian (in UK)]

Bill Hall

Bill Hall

Bill - Its just over three months since my surgery and yesterday my cardiologist told me to stop the Amiodarone, having been on it for about 10 weeks. Do you continue to have blood tests for liver function for a while? I know the drug stays in your body for some time.

Hope we both get away with no more A Fib.

 

[Bill Hall]

Gillian - I never had any liver tests after I left the hospital. I think the Cle cardiologists severed their responsibility and my regular cardiologist didn't see me for six weeks. Even at that time he never suggested any possible liver problems. I guess I should feel fortunate, it seems we overlooked that possibility. Good to hear you are off the amiodarone and hope the best for you regarding the afib.