Re: Amiodarone dose

January 2, 2009

Hello Guy;

My ep putme on Amiodarone at first 600mg's a day and now 200 a day. To me it is the miracle drug. I haven't got shocked sice 2001 (knock wood). FYI i am also on 100mg of toprol, .125 of digoxin, lasix(40 mg) potassium(40 mg) coumidin 2 and 3 mgs alternating days. Regards,

TURK

From: Guy Scardina <guys101@...>Subject: Amiodarone dose Date: Friday, January 2, 2009, 3:42 PM

A few months ago my EP doc started me on amiodarone. I started on 400mg/day orally and a few weeks later I went to the hospital for IV infusion for 3 or 4 days. Even before I went to the hospital for the IV I had some side effects. When I went home after the IV I had more side effects and some of the original side effects worsened. My EP lowered the dose to 200mg/day and after a few weeks some of the side effects subsided. The doctor said that he was not sure that the lower dose would be effective in preventing shocks from my ICD. Is anyone on amiodarone 200mg/day? If so, is it effective?

January 3, 2009

Turk, how long did you stay on 600 mg/day before lowering to 200?

Guy, what kind of side effects did you get? Did they fade on 200 mg?

I put up the question to the cardio, but he told me not to worry,

" those pills are candies " !!!

I am on 400 mg/day since six weeks; had to increese from 200 two weeks

after the ES due to another shock.

Janne

>

> From: Guy Scardina <guys101@...>

> Subject: Amiodarone dose

>

> Date: Friday, January 2, 2009, 3:42 PM

>

> A few months ago my EP doc started me on amiodarone. I started on

> 400mg/day orally and a few weeks later I went to the hospital for IV

> infusion for 3 or 4 days. Even before I went to the hospital for the IV

> I had some side effects. When I went home after the IV I had more side

> effects and some of the original side effects worsened. My EP lowered

> the dose to 200mg/day and after a few weeks some of the side effects

> subsided.

> The doctor said that he was not sure that the lower dose would be

> effective in preventing shocks from my ICD. Is anyone on amiodarone

> 200mg/day? If so, is it effective?

>

January 3, 2009

i was for a long time on 200mg and it was effective to a degree ! lowered the amount of shocks i got but it didnot last for ever ! i'm now on 400mg a day

stacie,25 and kira

From: Guy Scardina <guys101@...>Subject: Amiodarone dose Date: Friday, January 2, 2009, 3:42 PM

A few months ago my EP doc started me on amiodarone. I started on 400mg/day orally and a few weeks later I went to the hospital for IV infusion for 3 or 4 days. Even before I went to the hospital for the IV I had some side effects. When I went home after the IV I had more side effects and some of the original side effects worsened. My EP lowered the dose to 200mg/day and after a few weeks some of the side effects subsided. The doctor said that he was not sure that the lower dose would be effective in preventing shocks from my ICD. Is anyone on amiodarone 200mg/day? If so, is it effective?

January 3, 2009

Hi Guy,

My hubby was on amio then they took him

off it because he seemed to do so well. X 3.5 yr. Well about the time it

totally was out of his system (around 2.5months) he was shocked about 38 times

(appropriately) for VT. He now is back on it @ 200mg/day & no more zaps.

His thyroid has been affected so he is on meds for that-no other side effects

so far. But his last echo indicated about 8% drop in his EF so he has been put

on lasix every day to take the load off his heart vs the as needed before. He

also has taken a low dose of spironolactone (another diuretic) since the beginning

(4/2004). They will repeat his echo in 6 month instead of the usual 12 months

between. He has cardiomyopathy-clear plumbing but a lousy electrical system

Janet

Janet's

Custom Candy Wraps & Crafts

P.O. Box 124

New Palestine, IN 46154

317-294-1849

info@...

http://www.customcandywrapsandcrafts.com

Amiodarone dose

A few months ago my EP

doc started me on amiodarone. I started on

400mg/day orally and a few weeks later I went to the hospital for IV

infusion for 3 or 4 days. Even before I went to the hospital for the IV

I had some side effects. When I went home after the IV I had more side

effects and some of the original side effects worsened. My EP lowered

the dose to 200mg/day and after a few weeks some of the side effects

subsided.

The doctor said that he was not sure that the lower dose would be

effective in preventing shocks from my ICD. Is anyone on amiodarone

200mg/day? If so, is it effective?

January 3, 2009

i believe at first 2 weeks at 600 1 month at 500 then 1 months at 400 then about 6 years at 300 and for the past year 200

From: Janne <ystano@...>Subject: Re: Amiodarone dose Date: Friday, January 2, 2009, 7:12 PM

Turk, how long did you stay on 600 mg/day before lowering to 200?Guy, what kind of side effects did you get? Did they fade on 200 mg?I put up the question to the cardio, but he told me not to worry,"those pills are candies" !!! I am on 400 mg/day since six weeks; had to increese from 200 two weeksafter the ES due to another shock.Janne> > From: Guy Scardina <guys101@... >> Subject: Amiodarone dose> @groups .com> Date: Friday, January 2, 2009, 3:42 PM> > > > > > > A few months ago my EP doc started me on amiodarone. I started on > 400mg/day orally and a few weeks later I went to the hospital for IV > infusion for 3 or 4 days. Even before I went to the hospital for the IV > I had some side effects. When I went home after the IV I had more side > effects and some of the original side effects worsened. My EP lowered > the dose to 200mg/day and after a few weeks some of the side effects > subsided. > The doctor said that he was not sure that the lower dose would be > effective in preventing shocks from my ICD. Is anyone on amiodarone

> 200mg/day? If so, is it effective?>

January 3, 2009

only a little rash everyonce in a while and a little sensitivity to the sun all the time.

From: Janne <ystano@...>Subject: Re: Amiodarone dose Date: Friday, January 2, 2009, 7:12 PM

Turk, how long did you stay on 600 mg/day before lowering to 200?Guy, what kind of side effects did you get? Did they fade on 200 mg?I put up the question to the cardio, but he told me not to worry,"those pills are candies" !!! I am on 400 mg/day since six weeks; had to increese from 200 two weeksafter the ES due to another shock.Janne> > From: Guy Scardina <guys101@... >> Subject: Amiodarone dose> @groups .com> Date: Friday, January 2, 2009, 3:42 PM> > > > > > > A few months ago my EP doc started me on amiodarone. I started on > 400mg/day orally and a few weeks later I went to the hospital for IV > infusion for 3 or 4 days. Even before I went to the hospital for the IV > I had some side effects. When I went home after the IV I had more side > effects and some of the original side effects worsened. My EP lowered > the dose to 200mg/day and after a few weeks some of the side effects > subsided. > The doctor said that he was not sure that the lower dose would be > effective in preventing shocks from my ICD. Is anyone on amiodarone

> 200mg/day? If so, is it effective?>

January 4, 2009

Hi Guy,

I too was first loaded on amioderone via IV after my SCA. I was sent

home from the hospital on 400 mg. I stopped taking it all together

with the doctors knowledge, only to have an arrhythmic event occur

several months later. I was reloaded on it, put back on 400 mg. as a

maintenance dosage. After several months, I talked to the doctor about

lowering my dosage (due to side effects). She didn't want to do it so

I lowered it myself over a months time. I eventually got down to 100

mg which is where my dosage has remained. I have remained stable ever

since.

According to research done in the UK, their standard maintenance

dosage is 100-200 mg daily, not the 400 mg that we get over here in

the states.

Everyone has to make their own choices about what they can live with

and what they can't. Each one of us is different. For me.... the

question always comes down to quality of life versus quantity of life.

Good Luck,

Bonnie

>

> A few months ago my EP doc started me on amiodarone. I started on

> 400mg/day orally and a few weeks later I went to the hospital for IV

> infusion for 3 or 4 days. Even before I went to the hospital for the IV

> I had some side effects. When I went home after the IV I had more side

> effects and some of the original side effects worsened. My EP lowered

> the dose to 200mg/day and after a few weeks some of the side effects

> subsided.

> The doctor said that he was not sure that the lower dose would be

> effective in preventing shocks from my ICD. Is anyone on amiodarone

> 200mg/day? If so, is it effective?

>

January 5, 2009

Thanks to all who responded to my message. It really helps to know

about the experience of others.

The side effects were trouble sleeping, nervousness, numerous ectopic

beats (increased by activity), legs feel rubbery and constipation. On

the lower dose some of the symptoms have lessened. The worst is the

sleeping problem. I was only getting 2 or 3 hours before my PCP

prescribed Xanax and then my EP switch me to Ambien. My PCP put me on

Lexapro, an antidepressant. My EP thought that depression was causing

the symptoms. I read where one of the side effects of Lexapro might

be sleeping problems. I really don't think that I was depressed. I

had none of these symptoms before starting amiodarone.

I am close to seventy years old and have CHF which has gotten worse

over the last few years. I think that I have accepted that and try to

live one day at a time.

Janne, I think that everyone on amiodarone knows that it is not

candy. Even my EP made the comment that he did not think the drug

would pass the FDA if it were submitted today. My understanding is

that the drug was developed in Europe about thirty years ago and was

approved for use here at that time.

Since I wrote my orginal message I am almost sure that I had a

treatment from my ICD. It was not a shock but ATP. I will find out

for sure at the next interrogation. The last shock I had was in July

of this year and the one before that was in the Fall of 1997. I have

had quite a few ATP's since I got my ICD in 1995.

Bonnie, you are right. I don't want to live my remaining days in

misery if I can help it.

January 7, 2009

Hi,

I'm a little puzzled that I've received only Guy's post from this list since

I subscribed to it more than a day ago. I had the impression that it had a

lot of subscribers and more list " traffic, " as they say. More activity. Even

Guy's message sounds as if there have been fairly lively exchanges, for

which he's expressing appreciation. Am I failing to receive messages? I

looked in my ISP's email spam folder, but I don't find anything being held

there with ZAP in the subject line.

Meantime, I have a couple of questions of a pretty simple nature about terms

in Guy's post. I've absorbed and appreciated his story, and I don't have

anything to contribute to this topic as I'm completely inexperienced so far.

but there are expressions and terms I guess I ought to be learning. For

example, I know what he means by his " PCP, " primary care physician, or " my

doctor, " as we used to call our family doctor or internist in the days

before HMOs and all this terminology. So I got that.

But how about this EP person? Now, I've just consulted a doctor who calls

himself an electrocardiologist, a specialist in installing ICDs and such.

I'm trying to gather enough information to feel secure about making the

choice to call him and say I'll get the implant. Even though it sounds like

a nightmarish way to extend your life, shocking you all the time and

requiring that you take an unpleasant drug to mminimize the gratuitous

shocks. but " EP " doesn't sound like this doctor. What sort of doctror is

that?

also, guy wrote:

Since I wrote my orginal message I am almost sure that I had a

treatment from my ICD. It was not a shock but ATP. I will find out

for sure at the next interrogation.

what is an ATP? I thought an ICD is only supposed to shock. Is this another

thing it does? When? In response to what stimulus? And what do you mean by

an interrogation? Just a way to say " at my next appointment with this type

of doctor? " I'm trying to imagine the round of medical appointments and

trreatments that will happen if I get an ICD. Thanks.

guy wrote:

The last shock I had was in July of this year and the one before that was in

the Fall of 1997. I have

had quite a few ATP's since I got my ICD in 1995.

again, what were these ATPs? And also, what did you feel or what were you

aware of just before the shocks happened? did you feel a fluttering in your

chest? Were you active? Standing? Lying down? What happens when you get a

shock? Are you made unconscious by the heart arrhythmia and then you fall on

the floor and then the shock happens and you don't really feel it, and you

wake up a moment later? Or are you just standing in line at the supermarket

and the shock happens and you fall down in front of everyone, in pain as if

you've been kicked by a horse, and people call 911 for you? I'm not familiar

with anything that happens with this, I'm a real beginner. All explanations

will be *greatly* appreciated!

thanks,

P.s.P.S. Will someone just confirm that they're receiving my messages, even

if they don't wish to respond to my questions? Thanks. I really trying to

find some experienced people to talk with while I try to make my decision.

January 7, 2009

Thanks, TURK. They started me on 1200mg/day (pill dosage) and tapered

down the amiodarone to 200mg/day in just one week. Is that common when

in hospital right after 24 hours of amiodarone IV?

I had another shock after coming home and then had to double the dose

to 400mg/day.

The EP told me there is a new drug at investigation - which has fewer

side effects. Suppose it takes time to get it on the market...

Janne in Norway

> >

> > From: Guy Scardina <guys101@ >

> > Subject: Amiodarone dose

> > @groups .com

> > Date: Friday, January 2, 2009, 3:42 PM

> >

> > A few months ago my EP doc started me on amiodarone. I started on

> > 400mg/day orally and a few weeks later I went to the hospital for IV

> > infusion for 3 or 4 days. Even before I went to the hospital for

the IV

> > I had some side effects. When I went home after the IV I had more

side

> > effects and some of the original side effects worsened. My EP lowered

> > the dose to 200mg/day and after a few weeks some of the side effects

> > subsided.

> > The doctor said that he was not sure that the lower dose would be

> > effective in preventing shocks from my ICD. Is anyone on amiodarone

> > 200mg/day? If so, is it effective?

> >

>

January 7, 2009

Thank you, Guy.

<Janne, I think that everyone on amiodarone knows that it is not

candy.

Agree, that's why I want my old cardio back.. She never spoke like that.

Janne

>

> Thanks to all who responded to my message. It really helps to know

> about the experience of others.

> The side effects were trouble sleeping, nervousness, numerous ectopic

> beats (increased by activity), legs feel rubbery and constipation. On

> the lower dose some of the symptoms have lessened. The worst is the

> sleeping problem. I was only getting 2 or 3 hours before my PCP

> prescribed Xanax and then my EP switch me to Ambien. My PCP put me on

> Lexapro, an antidepressant. My EP thought that depression was causing

> the symptoms. I read where one of the side effects of Lexapro might

> be sleeping problems. I really don't think that I was depressed. I

> had none of these symptoms before starting amiodarone.

> I am close to seventy years old and have CHF which has gotten worse

> over the last few years. I think that I have accepted that and try to

> live one day at a time.

> Janne, I think that everyone on amiodarone knows that it is not

> candy. Even my EP made the comment that he did not think the drug

> would pass the FDA if it were submitted today. My understanding is

> that the drug was developed in Europe about thirty years ago and was

> approved for use here at that time.

> Since I wrote my orginal message I am almost sure that I had a

> treatment from my ICD. It was not a shock but ATP. I will find out

> for sure at the next interrogation. The last shock I had was in July

> of this year and the one before that was in the Fall of 1997. I have

> had quite a few ATP's since I got my ICD in 1995.

> Bonnie, you are right. I don't want to live my remaining days in

> misery if I can help it.

>

January 8, 2009

Hello Jane;

I am not sure how everyone gets their amiodarone load(initial huge doses so your body starts keeping a certain level of medicine), but in my case my ef function was about 11% and i had just gotten my icd 3 months before and i got shocked 14 times in a row one day and they admitted me to the hospital and during my 1 week stay there they changed my medication from sotalol, mexilitine digoxin to the medications i wrote before except they put me on lisinopril, lasix and potassium about 3 years later when i showed chf symptoms. I got my amiodarone dose through an iv and i think at first 1200 mgs then 600 mgs for a couple of days then gradually to 200. but i am curious how everyone else get them.

Regards

TURK

From: Janne <ystano@...>Subject: Re: Amiodarone dose Date: Wednesday, January 7, 2009, 2:17 AM

Thanks, TURK. They started me on 1200mg/day (pill dosage) and tapereddown the amiodarone to 200mg/day in just one week. Is that common whenin hospital right after 24 hours of amiodarone IV? I had another shock after coming home and then had to double the doseto 400mg/day.The EP told me there is a new drug at investigation - which has fewerside effects. Suppose it takes time to get it on the market...Janne in Norway> > > > From: Guy Scardina <guys101@ >> > Subject: Amiodarone dose> > @groups .com> > Date: Friday, January 2, 2009, 3:42 PM> > > > > > > > > > > > > > A few months ago my EP doc started me on amiodarone. I started on > > 400mg/day orally and a few weeks later I went to the hospital for IV > > infusion for 3 or 4 days. Even before I went to the hospital forthe IV > > I had some side effects. When I went home after the IV I had moreside > > effects and some of the original side effects worsened. My EP lowered > > the dose to

200mg/day and after a few weeks some of the side effects > > subsided. > > The doctor said that he was not sure that the lower dose would be > > effective in preventing shocks from my ICD. Is anyone on amiodarone > > 200mg/day? If so, is it effective?> >>

January 8, 2009

does anyone take Coreg ? my cardio dr says it a very good drug any thoughts ?

From: Gurhan Ozdemir <goturk1@...> Sent: Thursday, January 8, 2009 10:08:19 AMSubject: Re: Re: Amiodarone dose

Hello Jane;

I am not sure how everyone gets their amiodarone load(initial huge doses so your body starts keeping a certain level of medicine), but in my case my ef function was about 11% and i had just gotten my icd 3 months before and i got shocked 14 times in a row one day and they admitted me to the hospital and during my 1 week stay there they changed my medication from sotalol, mexilitine digoxin to the medications i wrote before except they put me on lisinopril, lasix and potassium about 3 years later when i showed chf symptoms. I got my amiodarone dose through an iv and i think at first 1200 mgs then 600 mgs for a couple of days then gradually to 200. but i am curious how everyone else get them.

Regards

TURK

From: Janne <ystano (DOT) com>Subject: Re: Amiodarone dose@groups .comDate: Wednesday, January 7, 2009, 2:17 AM

Thanks, TURK. They started me on 1200mg/day (pill dosage) and tapereddown the amiodarone to 200mg/day in just one week. Is that common whenin hospital right after 24 hours of amiodarone IV? I had another shock after coming home and then had to double the doseto 400mg/day.The EP told me there is a new drug at investigation - which has fewerside effects. Suppose it takes time to get it on the market...Janne in Norway> > > > From: Guy Scardina <guys101@ >> > Subject: Amiodarone dose> > @groups .com> > Date: Friday, January 2, 2009, 3:42 PM> > > > > > > > > > > > > > A few months ago my EP doc started me on amiodarone. I started on > > 400mg/day orally and a few weeks later I went to the hospital for IV > > infusion for 3 or 4 days. Even before I went to the hospital forthe IV > > I had some side effects. When I went home after the IV I had moreside > > effects and some of the

original side effects worsened. My EP lowered > > the dose to 200mg/day and after a few weeks some of the side effects > > subsided. > > The doctor said that he was not sure that the lower dose would be > > effective in preventing shocks from my ICD. Is anyone on amiodarone > > 200mg/day? If so, is it effective?> >>

January 8, 2009

Hi ,

Just received your message today, even though I see you sent it on 1/6.

EP is your electrophysiologist.

Interrogation is what they do to your ICD when you go in for checks. I have a Medtronic device and they are able to hold up this gadget that looks like a mouse for a computer to your ICD that reads the activity that has happened. They can tell if you have had any shocks (which you should already know happened) or runs of VTac (Ventricular tachycardia). If you have a pacemaker also, they can tell how often you are being paced.

Have a great day!

The last shock I had was in July of this year and the one before that was in the Fall of 1997. I havehad quite a few ATP's since I got my ICD in 1995.again, what were these ATPs? And also, what did you feel or what were you aware of just before the shocks happened? did you feel a fluttering in your chest? Were you active? Standing? Lying down? What happens when you get a shock? Are you made unconscious by the heart arrhythmia and then you fall on the floor and then the shock happens and you don't really feel it, and you wake up a moment later? Or are you just standing in line at the supermarket and the shock happens and you fall down in front

of everyone, in pain as if you've been kicked by a horse, and people call 911 for you? I'm not familiar with anything that happens with this, I'm a real beginner. All explanations will be *greatly* appreciated!thanks,P.s.P.S. Will someone just confirm that they're receiving my messages, even if they don't wish to respond to my questions? Thanks. I really trying to find some experienced people to talk with while I try to make my decision.

January 8, 2009

I take coreg andn have had good results with it. No complaints or side effects. Have been on it for three years.\\

If you think you're too small to make a difference, you've never gone to bed with a mosquito.

From: Janne <ystano (DOT) com>Subject: Re: Amiodarone dose@groups .comDate: Wednesday, January 7, 2009, 2:17 AM

Thanks, TURK. They started me on 1200mg/day (pill dosage) and tapereddown the amiodarone to 200mg/day in just one week. Is that common whenin hospital right after 24 hours of amiodarone IV? I had another shock after coming home and then had to double the doseto 400mg/day.The EP told me there is a new drug at investigation - which has fewerside effects. Suppose it takes time to get it on the market...Janne in Norway> > > > From: Guy Scardina <guys101@ >> > Subject: Amiodarone dose> > @groups .com> > Date: Friday, January 2, 2009, 3:42 PM> > > > > > > > > > > > > > A few months ago my EP doc started me on amiodarone. I started on > > 400mg/day orally and a few weeks later I went to the hospital for IV > > infusion for 3 or 4 days. Even before I went to the hospital forthe IV > > I had some side

effects. When I went home after the IV I had moreside > > effects and some of the original side effects worsened. My EP lowered > > the dose to 200mg/day and after a few weeks some of the side effects > > subsided. > > The doctor said that he was not sure that the lower dose would be > > effective in preventing shocks from my ICD. Is anyone on amiodarone > > 200mg/day? If so, is it effective?> >>

January 8, 2009

This belongs to another website but i think it explains a lot

electrophysiology key facts

Electrophysiology is the fastest growing of all the cardiovascular disciplines.

Electrophysiologists are cardiologists who have additional education and training in the diagnosis and treatment of abnormal heart rhythms. Close collaboration between electrophysiologists and other doctors who treat patients with heart disease is important.

Based on the Heart Rhythm Society Workforce Survey, 999 electrophysiologists1 (experts in heart rhythm disorders) were identified for the 1995 U.S. population of 263,434,000, a ratio of 1:263,690.

Of these 999, 795 are certified as having added special competency in electrophysiology by the American Board of Internal Medicine. Many have also passed the NASPExAM, the examination of special competence in cardiac pacing and implantable defibrillation.

With about 16,000 cardiologists in the United States, these numbers result in 1 electrophysiologist:16 cardiologists.

When the number of electrophysiologists/1,000,000 population is calculated, the U.S. average was 3.79/1,000,000.

Twenty-one states had less than 8 electrophysiologists and 12 states had less than 2.2 electrophysiologists/1,000,000 population.

Major cities, such as Philadelphia and Washington, DC, had high electrophysiologist/population densities. For example, there are some 50 electrophysiologists in the metropolitan Philadelphia area. In contrast, some rural areas have a minimal number of electrophysiologists (e.g., at the time of the survey, there was only one electrophysiologist in Idaho).

Even in states that have electrophysiologist densities higher than the national average, patients may have to travel over 250 miles to the nearest electrophysiologist. For example, New Mexico has 3.93 electrophysiologists/1,000,000 population, however, all are located in Albuquerque. When to See an Electrophysiologist Electrophysiologists determine whether an individual is in a group that is at high risk for SCA or other cardiovascular diseases. A number of tests may be performed including:

Echocardiogram. In this painless, noninvasive test, a device called a transducer is placed on the chest and sound waves are bounced off the heart. This provides a moving picture of the heart.

Holter monitors are external devices that are worn by an individual who may be at risk for heart disease. The monitor automatically records a continuous electrocardiogram (ECG) of the heart's electrical activity; it usually is worn for 24 to 48 hours.

An event recorder is a small, pager-sized device that also records the electrical activity of the heart. Unlike a Holter monitor, it does not operate continuously, but instead is activated by the individual whenever he or she feels the heart begin to beat too fast or chaotically. After the device is activated to record the heart rhythm, the patient can report the event and transmit the recording by phone to his doctor or other health care provider.

An electrophysiology study (EPS) is a test that can help predict if an individual is at high risk for sudden cardiac arrest. Signals are administered to the heart muscle in patterns to see if they will stimulate ventricular tachycardia (VT). The test is performed in a safe and controlled electrophysiology laboratory at a hospital or clinic and the patient is in no danger. In an EP study, local anesthetics are used to numb areas in the groin or near the neck, and small catheters are passed into the heart to record its electrical signals. During the study, the physician studies the speed and flow of electrical signals through the heart, identifies rhythm problems and pinpoints areas in the heart's muscle that give rise to abnormal electrical signals. An electrophysiology study can:

Identify which patients who have had a prior heart attack, or MI, are at risk for serious ventricular arrhythmias and, perhaps, SCA.

Help determine which patients may require aggressive treatment to prevent sudden cardiac arrest.

Identify individuals whose hearts cannot be induced into dangerous arrhythmias. They appear at lower risk for developing spontaneous, sustained VT that can lead to ventricular fibrillation and sudden cardiac arrest. The last shock I had was in July of this year and the one before that was in the Fall of 1997. I havehad quite a few ATP's since I got my ICD in 1995.again, what were these ATPs? And also, what did you feel or what were you aware of just before the shocks happened? did you feel a fluttering in your chest? Were you active? Standing? Lying down? What happens when you get a shock? Are you made unconscious by the heart arrhythmia and then you fall on the floor and then the shock happens and you don't really feel it, and you wake up a moment later? Or are you just standing in line at the supermarket and the shock happens and you fall down in front

of everyone, in pain as if you've been kicked by a horse, and people call 911 for you? I'm not familiar with anything that happens with this, I'm a real beginner. All explanations will be *greatly* appreciated!thanks,P.s.P.S. Will someone just confirm that they're receiving my messages, even if they don't wish to respond to my questions? Thanks. I really trying to find some experienced people to talk with while I try to make my decision.

January 8, 2009

,

My husband has taken Coreg since he was diagnosed with cardiomyopathy and CHF last March. He has done really well on it and takes a fairly small dose. He takes 3.125 mg twice a day. He also takes 40 mg of lasix, 25 of spironolactone, 81 mg aspirin, 10 mg of warfarin most days, and 5 mg of lisinoprol. His EF has gone from 10 to 25. We don't know how much of this is attributed to the meds and how much to his 110 lb weight loss and the fact that he has been walking at least 8 miles a day. I do think that the Coreg has really helped and he hasn't had to change his dosage yet. He doesn't show any symptoms of CHF now, except that he has been a really bad boy over the holidays and ate too much salty food, so he is retaining too much water. He is still working every day and is paced about 90% of the time at last check. He hasn't been zapped yet. He hasn't had any bad side effects from anything

yet. Hopefully, he won't. I hope that this helps.

Bonnie

From: Janne <ystano (DOT) com>Subject: Re: Amiodarone dose@groups .comDate: Wednesday, January 7, 2009, 2:17 AM

Thanks, TURK. They started me on 1200mg/day (pill dosage) and tapereddown the amiodarone to 200mg/day in just one week. Is that common whenin hospital right after 24 hours of amiodarone IV? I had another shock after coming home and then had to double the doseto 400mg/day.The EP told me there is a new drug at investigation - which has fewerside effects. Suppose it takes time to get it on the market...Janne in Norway> > > > From: Guy Scardina <guys101@ >> > Subject: Amiodarone dose> > @groups .com> > Date: Friday, January 2, 2009, 3:42 PM> > > > > > > > > > > > > > A few months ago my EP doc started me on amiodarone. I started on > > 400mg/day orally and a few weeks later I went to the hospital for IV > > infusion for 3 or 4 days. Even before I went to the hospital forthe IV > > I had some side effects. When I went home after the IV I had moreside > > effects and some of the original side effects worsened. My EP lowered > > the dose to

200mg/day and after a few weeks some of the side effects > > subsided. > > The doctor said that he was not sure that the lower dose would be > > effective in preventing shocks from my ICD. Is anyone on amiodarone > > 200mg/day? If so, is it effective?> >>

January 8, 2009

--

I've received your messages. They are going through to the group. (And now I see a number of folks have responded to you. Here are my "two cents' worth" of thoughts for you:

1) I've been on this list for about a year and a half. There are over 600 members currently register on this list, but like all such "groups," a relatively few people post regularly. I'd say that on average there are 1-3 posts a day, sometimes more for a while, some days none.

2) I was diagnosed with cardiomyopathy a couple of years ago in Seattle, at which time an ICD was anticipated as part of my future. This was quite a surprise, but in retrospect I had symptoms of unusual fatigue, etc. (I thought I was just getting old -- 63 at the time -- and out of shape :-) I travel full-time in an RV around the country so I later found an "Integrative Cardiologist" in sdale, AZ, who was willing to work with me long distance and was very holistic in her approach. She also suggested that an ICD was a good option, but I didn't pursue it then. "Later. I'm heading out of town." Unfortunately, she quit her practice and I haven't found anyone like her since. I now am hooked up with an EP at the University of Arizona in Tucson where I used to work.

3) My EF (ejection fraction) has hovered around 15 - 20 or a little better since I was first diagnosed. Yet, I am feeling well, have no CHF going, and I can ride a bike for a good half hour or more, hike some, etc. My day to day life is not nearly as limited as the low EF would suggest. So I've learned, among many other things, that what a particular EF means will vary from person to person, given one's history, confounding problems, etc. Some people with EF's as high as 35 are very sick, according to my doctor; EF alone is not the final word on your status.

5) In Sept of 07 I passed out (syncope) while we were camping and visiting friends in Southern Michigan. (It was on the heels of a coughing fit brought on by inhaling some bugs while talking on the phone outside my trailer!)

At the hospital, given my history and the surmised cause of my fainting spell, I was talked in to having an ICD implanted. The surgical and recovery experiences were fairly simple. I've been lucky and have had no discomfort with the presence of the ICD. It has never fired off since it was installed, so I don't usually even think about it any more. I have had it checked by the medical center staff through over-the-phone interrogation from time to time, and I seem to be doing fine. (I had huge hassles with my insurance company to pay for this, but I finally won on an appeal with them, and a year later they agreed to process all my claims. But that's another story.)

6) When my Medtronics unit was installed in early September of 07, it was just before the recall was announced for a particular lead (wire) that was part of what was put in me; the "recall" was due to a relatively high incidence of failure of the lead. But it is still quite small. We've decided not to try to remove and replace it, for the risk of a problem with the lead is a lot lower than the risk of removing the lead. Because of this possibility,though, I learned that the ICD can be shut off by a magnet. So I obtained a magnet from the cardiology staff in Michigan, also made by Medtronics, so that If the ICD were to start firing "inappropriately" I could shut it down until getting to a hospital. This, of course, is a judgment call, but I feel more secure knowing that the magnet is in the glove box of my truck and my partner knows how to use it and to help me if I feel it is the wise choice to make. Obviously, one needs to know his own body and heart history to ascertain what is going on. So far -- no problem here.

7) My ICD, and I think most of them, will attempt to "pace" your heart if the heart rate escalates into a certain zone. it tries to "grab on" to your heart beat regulatory process and slow it down to restore it to normal. This can help prevent a run-away rhythm problem from requiring a full Zap, and I understand this does come into play for a lot of people. I have only experienced the ICD pacing me when I was in the ICD lab and the technician was monitoring and adjusting things (a wireless process that is, to me, rather fascinating) and he turned on the pacing function for a bit. He asked "do you feel that?" I hadn't noticed it until he asked; I hadn't noticed feeling anything different, but when called it to my attention, things felt a little different in my chest but certainly not traumatic.

When they "interrogate" your ICD, which means they do a readout of all the data that is stored in the ICD, they can tell not only if you've had any shocks and when, but also if there have been any pacing events. And of course they are monitoring the battery power level as well. I understand that an ICD needs to be replaced about every 5 to 8 years, depending on how much it has used up power responding to incidents.

8) I have heard that you should insist on having an ICD installed by a cardiac surgeon, not one who is "only" an EP (electrophysiologist.) And you want to be especially careful about choosing an experienced cardiac surgeon remove an implanted lead, should that ever be necessary. For routine replacement of an ICD, a wider variety of specialists can perform this rather simple procedure safely. Others on the list may have more to say on that....

9) The main comments I've noticed about people wishing they did not have their ICD are from those who have experienced significant discomfort from the effect the physical presence of the ICD in their shoulders due, either to the manner in which it was installed, or to their particular physical structure in that area. And for a few people, this discomfort has been fairly severe. But it is rare, I believe, for this to be an outcome.

10) I am someone who is very proactive to learn what I can and seek a professional partnership with a physician, rather than merely being a compliant "patient." I research a lot. I worked in a medical school for many years, and I realize that all doctors have various blinders on (pharmaceutical company influence particularly) as well as great training and good intentions. Second opinions are often warranted.

I feel there is a lot of good information about many options for enhancing your heart health in addition to the prescription drugs that are out there. I have found one particular book especially instructive -- "Reverse Heart Disease Now" by two holistically oriented cardiologists -- Sinatra and . They review a lot of research and their own experiences with prescribing a number of specific supplements as well as lifestyle changes, drugs, etc. for heart patients, including for CHF and cardiomyopathy patients.

I've been following their recommendations for a year and a half, and I believe this has been very helpful in maintaining my health. I have been frustrated that 3 of the 4 doctors I've engaged since my diagnosis are very dismissive of supplements. I follow my own plan based largely on this book, and I'm happy with the results, though the "evidence" is very subjective. Dr. Sinatra and Dr. ' recommendations regarding strengthening your heart include significant amounts of CoQ10, L-carnitine, magnesium, and D-Ribose, among other things.

I'm a firm believer in the idea that your job is to really tune in to your own body, pay attention to what your responses are to various things (keep good diaries), trust your experience and always include that experience as part of the mix in deciding with your physicians what to do next.

11.) One other issue that may come up for you is that of driving after you've received your ICD. Restrictions on driving area big issue for many folks on here, as it was for me. There are some recent studies which suggest that driving with an ICD is not significantly more risky than the risks of driving in general. I plan to post a short article on this soon.

That's a lot for now, but I hope some of this helps. Good luck in moving forward with this new chapter in your life.

Bill

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In a message dated 1/8/2009 8:59:54 A.M. Pacific Standard Time, yardbird@... writes:

Hi,I'm a little puzzled that I've received only Guy's post from this list since I subscribed to it more than a day ago. I had the impression that it had a lot of subscribers and more list "traffic," as they say. More activity. Even Guy's message sounds as if there have been fairly lively exchanges, for which he's expressing appreciation. Am I failing to receive messages? I looked in my ISP's email spam folder, but I don't find anything being held there with ZAP in the subject line.Meantime, I have a couple of questions of a pretty simple nature about terms in Guy's post. I've absorbed and appreciated his story, and I don't have anything to contribute to this topic as I'm completely inexperienced so far.but there are expressions and terms I guess I ought to be learning. For example, I know what he means by his "PCP," primary care physician, or "my doctor," as we used to call our family doctor or internist in the days before HMOs and all this terminology. So I got that.But how about this EP person? Now, I've just consulted a doctor who calls himself an electrocardiologist, a specialist in installing ICDs and such. I'm trying to gather enough information to feel secure about making the choice to call him and say I'll get the implant. Even though it sounds like a nightmarish way to extend your life, shocking you all the time and requiring that you take an unpleasant drug to mminimize the gratuitous shocks. but "EP" doesn't sound like this doctor. What sort of doctror is that?also, guy wrote:Since I wrote my orginal message I am almost sure that I had atreatment from my ICD. It was not a shock but ATP. I will find outfor sure at the next interrogation.what is an ATP? I thought an ICD is only supposed to shock. Is this another thing it does? When? In response to what stimulus? And what do you mean by an interrogation? Just a way to say "at my next appointment with this type of doctor?" I'm trying to imagine the round of medical appointments and trreatments that will happen if I get an ICD. Thanks.guy wrote:The last shock I had was in July of this year and the one before that was in the Fall of 1997. I havehad quite a few ATP's since I got my ICD in 1995.again, what were these ATPs? And also, what did you feel or what were you aware of just before the shocks happened? did you feel a fluttering in your chest? Were you active? Standing? Lying down? What happens when you get a shock? Are you made unconscious by the heart arrhythmia and then you fall on the floor and then the shock happens and you don't really feel it, and you wake up a moment later? Or are you just standing in line at the supermarket and the shock happens and you fall down in front of everyone, in pain as if you've been kicked by a horse, and people call 911 for you? I'm not familiar with anything that happens with this, I'm a real beginner. All explanations will be *greatly* appreciated!thanks,P.s.P.S. Will someone just confirm that they're receiving my messages, even if they don't wish to respond to my questions? Thanks. I really trying to find some experienced people to talk with while I try to make my decision. New year...new news. Be the first to know what is making headlines.

January 8, 2009

also ATP is anti-tachycardia pacing . if you check your icd settings it will tell you. for example some of my settings are

For Bradycardia slower than 50 beats per minute continual pacing at 60 until the heart starts beating normally. For tachycardia above 190 beats per minute 5 sets of 10 pacing at 190 beats per minute. in other words it takes control of my heart and makes it beat 200 beats per minutes for 10 seconds then lets it go see if the heart gets back into rhythm. If that doesn't work 5 sets ATP for 10 seconds at 210 beats per minute then lets it go. if that doesn't work shocks for 1 time at 7 joules the it paces again. if that doesn't work 1 shock at 19 joules (i think) then paces again then if it is the same shocks at 32 joules. if the beats go higher than 210 it waits 10 seconds then shocks 1 time at 7 waits 10 seconds 1 time at 19 joules waits 10 seconds then shocks of 32 joules every ten seconds. God forbid that happens. Maximum my heart went conscious was 187 and in those beats i would not get

shocked.The last shock I had was in July of this year and the one before that was in the Fall of 1997. I havehad quite a few ATP's since I got my ICD in 1995.again, what were these ATPs? And also, what did you feel or what were you aware of just before the shocks happened? did you feel a fluttering in your chest? Were you active? Standing? Lying down? What happens when you get a shock? Are you made unconscious by the heart arrhythmia and then you fall on the floor and then the shock happens and you don't really feel it, and you wake up a moment later? Or are you just standing in line at the supermarket and the shock happens and you fall down in front

of everyone, in pain as if you've been kicked by a horse, and people call 911 for you? I'm not familiar with anything that happens with this, I'm a real beginner. All explanations will be *greatly* appreciated!thanks,P.s.P.S. Will someone just confirm that they're receiving my messages, even if they don't wish to respond to my questions? Thanks. I really trying to find some experienced people to talk with while I try to make my decision.

January 9, 2009

Dear Gurhan,

I think I see. ATP is an action an ICD takes when it senses potentially

dangerous arrhythmia. Is the first part painless? It attempts first to

return the heart rate to normal by several steps and, if it sees it's

failing, gives a series of shocks whose electrical strength is measure in

units called joules. All new to me.

Also, both slower and faster than acceptable heart rates are monitored and

acted upon. " brachy " means sub normal and " tachy " means higher than normal.

I see the second term's relationship to the tachometer of an engine, I

think. Probably both from Ancient Greek.

Okay. I'm learning. thanks.

that are measure nromal,firt forst

Re: Re: Amiodarone dose

also ATP is anti-tachycardia pacing . if you check your icd settings it will

tell you. for example some of my settings are

For Bradycardia slower than 50 beats per minute continual pacing at 60 until

the heart starts beating normally. For tachycardia above 190 beats per

minute 5 sets of 10 pacing at 190 beats per minute. in other words it takes

control of my heart and makes it beat 200 beats per minutes for 10 seconds

then lets it go see if the heart gets back into rhythm. If that doesn't work

5 sets ATP for 10 seconds at 210 beats per minute then lets it go. if that

doesn't work shocks for 1 time at 7 joules the it paces again. if that

doesn't work 1 shock at 19 joules (i think) then paces again then if it is

the same shocks at 32 joules. if the beats go higher than 210 it waits 10

seconds then shocks 1 time at 7 waits 10 seconds 1 time at 19 joules waits

10 seconds then shocks of 32 joules every ten seconds. God forbid that

happens. Maximum my heart went conscious was 187 and in those beats i would

not get shocked.