Re: Amiodarone

[Guest guest]

Jimmy & Mel -- thanks for your replies. Mel, you mirrored my

sleeplessness problem exactly. I too have been taking Ambien, and

although it puts me to sleep, I wonder if I should be taking it every

night and still feeling bad the next day. My cardiologist does not want

me on Ambien--says my cardiac meds should not be causing sleeplessness.

The " don't worry about it " attitude is great advice BUT HOW DO YOU DO

IT??? It takes me forever to go to sleep and then I too dream (not

about long zaps but worrisome nonetheless), then when I awake, I have

the feeling I haven't been asleep at all. I'm really trying to get into

RELAXATION, but if anyone has any other suggestions, fire away.

Anita

------------------------------------------------------------------------

[Guest guest]

Anita

One of the Thursday Chats a sleep disorder specialist was on he suggested:

Turn the clock so you can not see it

If you get up don't turn on lights

Read a dull book

I've found soft music, contemporary or classical works fine

Try some meditation/relaxation tapes

I found listening to talk radio makes me fall asleep, but wake right away

Last couple of nights have been good. Not constant sleep but enough. Try not thinking about sleep, relax and think good thoughts, beautiful thoughts, favorite vacation, most marvelous event.

I do all this and am a crab at work the next day. Some days are great, wish they all could be.

I recently was on a flight and worked myself into a frenzy and when the flight landed a ambulance was waiting. Two days in the hospital and nothing was found. Scan on ICD was clean and cardiologist said my heart was just fine and resume normal activities.

What is left but not worry.

I was in the habit of constantly taking my pulse every time I feel a twinge, I've also tried to quit doing this, I alarm my self, friends and family.

All this seems to be working, just sometimes I still get anxious. What else to do? I don't have the answer, nor do any doctors. Lord know I've asked each and every one.

Mel

[Guest guest]

Anita,

Re Amiodarone. I am not taking it, but I have taken up Transcendental

Meditation (as of January this year). I am now 11 months into it and almost

from the very first I was able to appreciate a new ability to begin to cope

with stress and relax more than I had ever been able to do before.

The 'course' in Australia which involves a weekend and two morning or

evening sessions - costs $1,000 currently, For something so simple to grasp

it seems expensive but once you begin to feel the benefits the price is

small indeed.

I also tried the tricvk of turning the clock away at night. Another good

idea which really works.

Keep ticking over - all the best,

Conrad

------------------------------------------------------------------------

[Guest guest]

" sue " <larrysu-@...> wrote:

original article:/?start=849

> Hi Gordon and all,

>

> Many of you may have heard me say this a long time ago, but for

newbies

> to this medication, I'd like to pass this on. Don't ... do NOT ...

let

> a doctor take you off this medication " cold turkey " . When I had a

> change of doctors, this happened and within a few weeks I had a sudden

> death heart attack due to ventricular tach. Most doctors know not to

> do this, but it helps to be on our toes. I had no idea at the time

> that there would be a problem. I've learned to ask alot of questions

> and check references.

>

> Sue

> Hi Sue

Thanks for your advice re-Amiodarone I am on 200mg a day.

I have a feelinf my Doctor wants to reduce tis dosage with a view to

stopping it altogether.

I have only had my ICD fitted in October 1998.

Nice to hear from you

Regards.

Norman

>

>

>

>

[Guest guest]

Good Luck I am thrilled to hear it is working well for you. The Betapace

makes me so tired and I worry what will happen when it stops working how much

can they give you before you can no longer function? I take 120 x 4 now and

tat has been holding me ok but I am so exhausted and yet I wake up so often

at night.

Oh well it is better thatn the alternative

Take CAre

Sharon

[Guest guest]

I started on Betapace and was having a lot of VT so was switched to

Quinidine Gluconate 325 MG x 3. Coreg was added about three weeks ago and

increased to 6.25 MG x 2 last week and I'm doing great. Just goes to show

you how different each of us is. Good luck with the Amiodarone.

[Guest guest]

Re: Amiodarone

> Good Luck I am thrilled to hear it is working well for you. The Betapace

> makes me so tired and I worry what will happen when it stops working how

much

> can they give you before you can no longer function? I take 120 x 4 now

and

> tat has been holding me ok but I am so exhausted and yet I wake up so

often

> at night.<snip>

>

Thank you for your mail, but I never had Beta-Pace, so I can't comment

on that item. I was on LoPressor for about 7 months, and all was well.

But for some reason, the Mitral Valve acted up, and a few other events

within the heart had me taking Coreg, and my ICD treated that move as it

would a hand grenade-numerous shocks, chest pains, etc., and the rush

visit to the E.P.'s lab for the interrogation showed the need for

Amiodarone. It's now almost a week with the new drug, and no zaps. Hope

I'm on the right track, at least for a while.

Regards,

Al Lidert

<Fort Lauderdale>

^The trouble with being poor is that it

takes up all your time.

[Guest guest]

i'm on amiodrone i take right now 200 i have took as much as 600 and as

little as 100 in going on 3 years i take digoxin laxis cozar procanabid and

lots of others i take abut 40 pills a day JUST FOR THE HEART I HAVE HAD THE

SAME EXPICINCE WITH IT AS YOU BUT AM DOING GOOD WITH IT RIGHT NOW i do have

info on it if you would like i can email it to you if you have any question

feel free to ask me

stacie,17

p.s. i'm still haveing rthmy truoble thou

Amiodarone

> I would appreciate hearing from ICD patients as to how many are on

> AMIODARONE and of those on this drug, what is your dosage. How many times

> was the size of

> the daily dose changed? What is the smallest daily dose in use now or in

the

> past?

> Which other drugs are taken along with the Amiodarone?

> I was just started on the Amiodarone, and within a

> week, my life was thrown into an unbelievable turmoil-immediately I took

it

> upon myself to cut the

> dosage in half, and the world seemed to come back to normal, the zaps

> stopped,

> and all has been quiet and peaceful. Further searching in the reference

> material

> stresses the mantra-USE THE LOWEST DOSE POSSIBLE!!!. This is what I'm

> trying to find-Started with original prescription of 400 Mgs. WOW, what a

> ride I WAS

> exposed to. That's when I took it upon myself to change things and still

use

> the

> Amiodarone, and so I cut the dose in half to 200 Mgs. Pure magic. My

> Cardiologist

> agreed that I did the right thing. How much lower can I go with the

dosage?

> Now you

> have to wonder, just how many of the posted complaints are due to errors

in

> doses,

> flippant prescriptions, errors in medications prescribed, etc. I realize

the

> risk when a

> fool is playing Doctor, and am not saying that anyone take it upon

> themselves to

> make changes in their Doctor's instructions, but I will repeat what I was

> told by

> Qualified medical people--EVERY prescription written for a patient is in

> reality an

> experiment, and the prescription writer silently hopes that all will go

> well. As we all

> know, the world is full of surprises, and at times stuff happens, so

> beware!!

> I am not a doctor, just a guy trying to learn how little Amiodarone can be

> used and

> still function. YES<YES, I did ask the Doctors, and got zero answers. They

> don't

> know, and that's where I started this entire tirade. Nobody knows-was

> told- " try it " .

> Regards,

> <Al Lidert>

>

>

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

[Guest guest]

What is v-tach and v-fib. Pardon my stupidity, I fairly new to this game.

[Guest guest]

Re: Amiodarone

> What is v-tach and v-fib. Pardon my stupidity, I fairly new to this game.

>

V-Tach is short for Ventricular Tachycardia-means something

is wrong

with the ventricle/(s) and Tach refers to the speed of the beat of the lower

part of the heart cells, which is where the ventricles are, and when the

speed gets too high, v-fib

comes into the picture. Fib means fibrillation, which usually means that the

heart is

not able to pump the blood as it just sets there and quivers like a bowl of

Jell-o.

this is where the defibrillator becomes the Hero, and shocks the heart at

between

500 and 800 volts, and most of the well-timed shocks can/might restore the

rate of the heart beat to a normal speed, like 72 beats/minute, or 80, or65,

but the rate of beating has to be a lot slower than what it is when

fibrillating. When all of this has

happened, you will be alive, in decent shape, and be on your merry way.

Regards,

Al Lidert

doeboy@...

[Guest guest]

ventricular tachacardia and ventricular fibrillation

Stacie,17

Re: Amiodarone

> What is v-tach and v-fib. Pardon my stupidity, I fairly new to this game.

>

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

[Guest guest]

Al- my husband, Curt was placed on Amiodarone immediately when he had his

v-tach. They then put in the ICD. Curt went throught the loading doe then

up to at least 400. Because he has had no events HE asked to lower the

dose. He was at 200 for some time then again asked for the drug to be

discontinued. It made him feel so lousy, no energy, increase in depression

symptoms. His Doctor reluctantly took him off of it. Because this is one

of the heaviest hitters of all drugs and a very conservative approach,

Doctors are very reluctant to take you off of this drug " Just in case " . In

Curt's case he didn't understand why he had the ICD if they were using the

drug too. If his heart goes too wacky or if he gets shocked he may

reconsider. We wanted to keep another card up the doctor's sleeve. Missy

Amiodarone

>I would appreciate hearing from ICD patients as to how many are on

>AMIODARONE and of those on this drug, what is your dosage. How many times

>was the size of

>the daily dose changed? What is the smallest daily dose in use now or in

the

>past?

>Which other drugs are taken along with the Amiodarone?

> I was just started on the Amiodarone, and within a

>week, my life was thrown into an unbelievable turmoil-immediately I took it

>upon myself to cut the

>dosage in half, and the world seemed to come back to normal, the zaps

>stopped,

>and all has been quiet and peaceful. Further searching in the reference

>material

>stresses the mantra-USE THE LOWEST DOSE POSSIBLE!!!. This is what I'm

>trying to find-Started with original prescription of 400 Mgs. WOW, what a

>ride I WAS

>exposed to. That's when I took it upon myself to change things and still

use

>the

>Amiodarone, and so I cut the dose in half to 200 Mgs. Pure magic. My

>Cardiologist

>agreed that I did the right thing. How much lower can I go with the dosage?

>Now you

>have to wonder, just how many of the posted complaints are due to errors in

>doses,

>flippant prescriptions, errors in medications prescribed, etc. I realize

the

>risk when a

>fool is playing Doctor, and am not saying that anyone take it upon

>themselves to

>make changes in their Doctor's instructions, but I will repeat what I was

>told by

>Qualified medical people--EVERY prescription written for a patient is in

>reality an

>experiment, and the prescription writer silently hopes that all will go

>well. As we all

>know, the world is full of surprises, and at times stuff happens, so

>beware!!

>I am not a doctor, just a guy trying to learn how little Amiodarone can be

>used and

>still function. YES<YES, I did ask the Doctors, and got zero answers. They

>don't

>know, and that's where I started this entire tirade. Nobody knows-was

>told- " try it " .

> Regards,

> <Al Lidert>

>

>

>

>Please visit the Zapper homepage at

>http://www.ZapLife.org

>

[Guest guest]

Missy,

thank God your husband could take the drug. I can not there are a few of us

who are allergic. I have to take beta pace and they keep increasing my dose.

Without the medication I get shocked to often or maybe just more often than

I care to deal with. Even with the dose I am taking I still manage to be

zapped about every two weks or so. So far there is no pattern and nothing

that they can tell out of the ordinary it just that I must like VT alot.

Funny Funny

Hope your husband continues his smooth ride!

Take Care

Sharon

[Guest guest]

Hi, Al,

Are you the Al on the BBS who had the horrible infection in your ICD

pocket?

Gadz, that was gruesome. My chest hurt for two hrs. in sympathy after

reading that.

Question at large about the Amiodarone: My husband was on that (IV)

his first

2 days in the hospital. Then he was d/c'd, and was sent home with what

seems to

be a very minimal dose of Lopressor (metoprolol). It's 50 mg total,

taken in 25 mg

doses twice/daily. Is this unusual? I've been reading how most of you

are on the

amiodarone. I'm wondering if the drs. decided that they'd try something

with fewer

side effects, to start him off.... but that's just guessing. He hasn't

been zapped, yet.

He hasn't gone back yet, either, for an interrogation. Think that

happens in April.

Would appreciate your comments on this.

Sue

--

" She was not quite what you would call refined.

She was not quite what you would call unrefined.

She was the kind of person that keeps a parrot. "

-- Mark Twain

Rich and Sue Owens

http://www.geocities.com/Yosemite/Meadows/7457/index3.html

[Guest guest]

Sue... I didn't go home with the amio. After being zapped on my 8th day, and

thats after the 190 beats setting..they decided they should put me on it. I

also take lopressor, (50mg. daily)accupril,lipitor and lasix....(and a few

others not heart related)so far so good with no drug reaction...I believe the

key is to be sure you ask or check interations on the net before using new

meds. Remember we are responsible for our care, so if there is new

treatment, or problems...I plan to make sure my Doc. knows about it..after

all he/she has hundreds to take care of ....we have just us. Blessings,

Stephi

[Guest guest]

My cardiologist wants to put me on amiodarone. The electrophysiologist says

that the ICD is all I need (other than the stew of beta blockers, ACE

inhibitors, and Lasix). My wife (a physician but not a cardiologist) said

that the potential negative side effects of long term use of amiodarone

preclude its use unless it is absolutely necessary, particularly on younger

patients. Every cardiologist seems to have his/her own opinion. I don't

want pulmonary fibrosis in addition to cardiomyopathy.

M

At 10:13 PM 3/2/01 -0800, you wrote:

>Sue - you mentioned it seems most of us are on amiodarone. As I

>understand it, amiodarone is the drug of last resort. I had my ICD

>2-1/2 years and had tried a couple of other anti-arrhythmics before I

>was put on amiodarone. It has many potentially serious side effects and

>according to my doctor, they prefer not to use it on people my age (47)

>because it's not a drug you can stay on for 20 years.

>

>

>Please visit the Zapper homepage at

>http://www.ZapLife.org

>

>

[Guest guest]

What is pulmonary fibrosis?

[Guest guest]

<A HREF= " http://www.webmd.com/ " >WebMD</A> This is a great site to give

info on all diseases, meds, etc.

[Guest guest]

> was put on amiodarone. It has many potentially serious side effects

> and

> according to my doctor, they prefer not to use it on people my age

> (47)

> because it's not a drug you can stay on for 20 years.

Yes, I saw someone make mention of pulmonary fibrosis (which sounds

like hardening of the lungs,

but not sure, waiting for a response to the query about that). Thanks

for your info.

Sue

[Guest guest]

Pulmonary fibrosis is scarring of the lungs. Reduces your oxygen level.

Can be fatal.

At 08:20 PM 3/3/01 -0500, you wrote:

What is pulmonary

fibrosis?

Sponsor

Please visit the Zapper homepage at

http://www.ZapLife.org

[Guest guest]

hi tom,

how goes it these days.

i just read your note gail and i guess that is another thing we have in

common. i also take 400 mgs of the amioderone. as far as side effects i

to read about them and as you said, had my britches near scared off. but,

fortunatley, the only side effects i have are lightheadedness if i get up

to fast and the anxiety feeling when im at rest. other than that i dont

even notice them.

ive been sitting at the marina every day for a week watching them put our

docks in and the anchors have finally settled into the mud so they let

people start putting the boats in as of today. i got a ride to the dealer

where i was having work done and brought it over. i was third one

in. and i walked out boat ramp twice today without needing to rest. when

i first go out of the hospital last month i had to stop three times to

catch my breath before reaching the top. pretty steep and i guess just

under 200 feet down to the water.

how are you feeling today.

now im happy,

summer begins here,

bob in pa

[Guest guest]

Bob like you the walk to the boat is always a pleasure. We live on board (year round). During the summer we are at the end of the dock - 600 foot out. has a hard time making it. The weather this week has been rough. Have found him several times with his head in the freezer so he can breath.

His biggest fear right now is how to work on the boat. If his defib goes off he will be in the water. When he went off in March he was disoriented right afterwards. So the fear is he will be in the water and not able to swim or anything. I may just have the kids throw on a coat of primer and worry about it in the fall when things cool down. Also we are due to be hauled this year to check the bottom. The "queen mary" when it is on the shore. Lot of bottom to a 47 footer. That may be my vacation.

He has the shakes all the time, sometimes worse than others - that's when I do sandwhiches. He is having some trouble with his left eye - but that could be due to a stroke. I will live with the side effects if it keeps him with us. The walks will be slow, hand holding time :-), preferably in the evening. He forgets a lot, but that we can smile and say it's age.

Time to walk the dog - have a good weekend everyone.

Gail

[Guest guest]

hi gail,,

god bless you guys. when i first got this thing [my nickname for the icd]

implanted in my chest i was devastated. i thought it was the end of the

world. it went off twice in the first two weeks and not for about 6 weeks

now. the fear of it going of was unbearable, but thanks to the great

people i have met, the stories i have read i got over it.

im on a lake and do like to swim from my boat [ a pontoon boat] but now i

will only do it when someone is with me. hopefully the grandkids will

spend a lot of time out here with me during summer vacation.

i guess im a pretty lucky guy. my e.f. is very low and yet the more i

exercise the better my endurance becomes. ill never be an athlete but

tackling that ramp made me proud of myself. and the two times mine went

off i had no real problems, just imagined ones. it just scared the living

heck out of me when it went off. but a minute later i was fine. just

scared.

where are you guys??? sounds like you may be in the northeast or florida

when you mentioned hubby putting his head in the freezer to breath. i

have my a/c running already. i use flovent twice a day to open the

breathing passages. it seems to help. and i have albuterol for the times

in between that i may need a little help. other than that i get better

every day.

byby and god bless.

bob in pa

[Guest guest]

Bob...i love blue!!! I think it would bring out your eyes...besides, I have been taking amiodarone for almost 6 years...and not a tinge of grey/blue, yet! I agree with you Bob..the lights at night and the sun reaction are the biggest changes I have noticed. Because of the extreme light sensitivity to my eyes I am prone to migraines...which I take two medications daily for...but I have heard that not everyone has such a reaction. Sue...Rich may have all or none of these reactions...just keep the Docs posted on how he is getting along!

[Guest guest]

Tom,

What sort of drug is Amiodarone?

Becca

--- Tom Greenholt <tgreenho@...> wrote:

> Sue,

>

> I have been on Amiodarone since November, 1997

> in various dosages. From

> the get go I had one major side effect and that

> was the micro deposits on

> the corneas. I am so used to them now that I

> don't even notice the

> difference in vision. I also briefly developed

> a thyroid thingy, but that

> actually cleared up on its own - in time.

>

> For a long time, I was on amiodarone 400 mg a

> day. Actually that is when I

> felt the best. Now I take the drug 4 days at

> 200 mg and 3 days at 400

> mg. Most doctors want their patients to be on

> as little of the drug as

> possible. I think this is because of the

> possibility of being on the drug

> for a very long period of time.

>

> I think Rich (I assume your husband) will be

> just fine. Everyone reacts

> differently to the drug and just have faith in

> your docs. They usually

> watch things pretty close.

>

> Hello to everyone else. When my job permits, I

> will be more active on the

> list.

>

> Have a wonderful weekend.

>

>

>

__________________________________________________