Aa
Aa
A
A
A
Close
391561 tn?1227047215

Amiodarone

Ok, I am starting to lose it. I have done the best I can to channel information regarding the deteriation of my health. I have been through quite a bit in the past, but the past few months have seemed surreal. Someone please awaken me and tell me that this has truly been a nightmare.
  I had always taken care of myself. Ran, weekly workout routine for years (not a builder, just tone). Relatively low cholesterol  (170-ish), BP 110/70, HR 60, 6'3, 190 lbs ( at one time body fat under 10%). After a serious MVA had long rehab and relearn limitations. My body took a hell of a beating.
  As of Dec 2007, I was helping my brother renovate his new home. (everything from framing, sheetrocking etc, - very strenuous work). Looking back, I realize that I was blaming many symptoms on past injuries and just trying to work through pain/etc, which I had learned for yrs. Sensations of passing out I blamed on severe pain (neck) etc.
  I go to ER with abdominal pain. MY HELL THUS BEGAN.....
  After learning that I had a bad gall bladder, the hits just kept coming. Dr informs me that I have a bad heart. Each test and new info was worse, it seemed than the last. Each dx was prefaced with severe... ( severely enlarged heart, severe heart failure, severe hypokiness, severly abnormal arrythmias.) Told that I have CHF, DCM, very enlarged LV, very low EF... many secondaries associated with such ( MVR, TVR, S3,S4, ). Told I had to have ICD, which I needed more time due to being overwhelmed.
  11-12 days in hosp, included; 6 runs of V-tach, BP 70/30, HR from 38- 212, EF anywhere from 15-30 (cath, Echo, stress), depending on test. Nothing to fix, as cath revealed clean coronaries.
   Return home with regimine of drugs which knock me on my Butt. Low BP, HR, no energy, concentration, etc...
  My continued tests upon returning home; holter reveals 6,000 Pvcs, 289 couplets. Event monitor stopped 10 days into planned 30 due to daily V-tachs and EP Dr said could no longer delay ICD. It was needed for low EF, Dilated Cardiomyopathy AND deadly V-Tach. Went in for pre-op next day.
  Icd implanted last thurs and Dr adds amiodarone to my list of meds. THe toxicity of this drug on the body and  organs is devistating. I would have to be on my death bed to agree to these side effects and potential for permanent damage. I try to go for a walk with my wife on sat and last FIVE houses, and have to go back home.
   How in the world is it possible for my health to have taken a nose-dive so quickly. Within 4 months I go from being productive to being reduced to being predominantly bedridden. I feel like @%$* (crud). My ICD was 'low voltage' pacing for 20 mins this afternoon. After talk with EP,  I'm advised that if I refuse to take amiodarone, then I have to go back in hosp for 2-3 days to go on sotalol.
   I have done the best I can to deal with this devistation, but how in the world does one's body fall apart overnight? I've had enough.
  Does anyone have any personal experience with amiodarone? From what I have read it is a last resort for deadly arrythmias. Thanks for any info...
20 Responses
Sort by: Helpful Oldest Newest
Avatar universal
How are you doing Steve?  I will pray for you too, along with everyone who has the problems we do!
Helpful - 0
Avatar universal
I am happy to hear this.  I jus started on Amiodarone recently and all the side effects listed really scare me!  Guess they have to say all of that.  You have put my mind at ease a little.  Thanks. So glad I found this forum!

Colleen
Helpful - 0
Avatar universal
I have taken amiodarone and sotolol.  I tolerated sotolol quite well.  After ablation, my doctor put me on amiodarone during the healine process.  I developed hand tremors and general shakiness.  He discontinued it after about a month.  It took another three months due to the half life of the drug, for my symptoms to go away.
   Please understand, that the side effects listed for every drug are generally rare events.  Most people get the benefit without the side effects, and when they do occur--as was in my case--we discontinued using it.  Amiodarone is a powerful and useful drug.  Again, side effects are the uncommon events, and your doctors are prescribing it for a reason.  
   Do your doctors indicate that with medication and rest, your heart may heal?  I am aware that sometimes that does happen.  Also if looks like only downhill, are you a transplant candidate?
  My daughter was the recipient of a kidney/pancreas transplant nine months ago.  Today she is free if diabetes and looks and acts like an olympic athlete.  It has made me a believer in transplants.  
   Best of luck to you.  We on this forum are hoping you will experience a reversal of this problem and your return to good health.  
  
Helpful - 0
701334 tn?1262853503
my dad was on it for 10 years,,,he developed thyroid cancer,got that removed,,messed up his eyes,,,needed surgery and glasses,,,and last but not least,,messed up his lungs and he died a 1 month slow painfull death of his lungs turning to a liver like consistancy,,not able to support life,
all this from that very drug!!,,this was all backed up by the professionals and specialists at the mayo clinic.
i asked why the ehck is this drug even legal with how it destroys a human body,,and you know what they say,,,,if it wasnt for the drug,he might have died years back from the arythmia problem instead!!!
i thought,i think id rather seen him die quickly from a heart issue,,then to do a slow agonizing death from that ****!
Helpful - 0
376186 tn?1219279505
Reading all of these posts remind me what a wonderful group of people we have here..so caring and a hug is being sent to all of you.....a huge,giant hug!! Feel better and hang in there....prayers for you and yours.
Bhttp://www.medhelp.org/posts/show/505176#
Helpful - 0
Avatar universal
Hi i read your post looking for someone on amioderone i had a heart attack at 35 i am now 60 and my life has been hell ever since i have an icd which has been a godsend till recently in august i had storms of 140 and above went into my local hospital after three weeks trying all sorts was told there was no more they could do for me.They put me on amioderone by drip in my arm was rushed to barts in london .Amioderone had given me flebitis in the arm they removed it and put me on it oraly.Then i went into fast rhythem again dr could not work out why icd had not cut in they reset it and bingo it worked apparntly it was set wrong but no one will admit it.They tried to do an ablation but amioderone tabs had quitend it down and could not induce a fast rhythem .I know amioderone has many side effects but has anyone had experiance of intense rash all over the body since september my life has been even more miserable by this chronic itcy rash my skin is peeling off i cant sleep they have me on steroids and an antihistamine at night i keep thinking is it the amioderone saw a dermatoligist he thinks it is pointing to amioderone if anyone out there can help me on this i would love to hear from you .ta
Helpful - 0
Avatar universal
yes I took amioderone a few years back , had to give it up I had thyroid problems and elevated liver enzymes as a result....off the drug now ..no lasting neg effects..for me anyway.
Helpful - 0
Avatar universal
I have been on amioderone for about 7 years without any side effects that I'm aware of. I  want to get off, but it has kept me in nsr so I'm afraid to make a change too quick.
Helpful - 0
Avatar universal
Dear Sirenet,

It sounds like you have been through a lot.  I joined this forum because my father has atrial fibrilaltion and wanted to ask a few questions.  My father has been on amiodarone for his atrial fibrillation.  He developed thyrtoxicosis with this drug and started losing a lot of weight.  So make sure you check your TSH levels if you are on this drug.  I hope this helps.  Good luck,

Helpful - 0
Avatar universal
Your post just brought tears to my eyes. Connie is right, you have given us so much already just because your story shows your struggle to keep going on. That takes a lot of strength and courage. It's something we all must do, but it helps to have the support of the wonderful people on this forum. Both supportive and informative these people are. Sometimes I get into a pity party, and then I get a better perspective when I read some of these posts. I feel ashamed sometimes, but I know I'll still be understood here.

I do not know anything about amiodarone except from what I've read on the internet. Have you tried to search it specifically in this forum. I think that might be a better method of reading people's experiences with it instead of waiting for responses.

Good luck in your journey and my thoughts will be with you for success in your health quest.
Helpful - 0
Avatar universal
omg you have been thru alot. Do they think there is a connection between the nerve damage in you neck and your heart problems?
Helpful - 0
21064 tn?1309308733
WOW!!  Steve, you have certainly touched the hearts of those who have never met you!  Believe it or not, your words and perseverance are incredibly inspiring!  You don't even know it, but you have already given us so much.  Thank you.

Went for two tests today (echocardiogram with a bubble test and carotid aretery U/S) and the doctor is almost positive I don't have a hole where he thought there might be one.  The techs did the test several times, but because I have significant mitral regurgitation and an eccentric jet, it was difficult to pinpoint where the blood was flowing and where the bubbles were coming from.  They called the doctor and he ran the bubbles through several more times.  He is nearly certain the bubble escape is from something benign with the pulm valve and my lungs (some kind of miscommunication).  He said if I have another episode, I'll need the transesophageal echo...YUK!!!  He said he was only trying to determine if I had a PFO today, but would review the rest of the images later and call me tomorrow.  The tech thought my carotid ultrasound looked fine and the doctor told me ahead of time it would probably be OK, but he will let me know about tomorrow also.  Then he asked if I had seen a neuro yet....Um, no.  So, I'm calling tomorrow for an appointment.  Thanks for remembering and for the good luck...fingers crossed!

As for complaining, this is a very safe place for you to share your frustrations and to vent.  However, we'll also be here to celebrate all the good stuff with you!  AND, there will be brighter days, I'm just sure of it!!  One day at a time my friend....

Connie
Helpful - 0
391561 tn?1227047215
  I sincerely thank each and everyone of you for your generous support and words of encouragement. The power we have to help one another is immeasurable. I have drawn much strength from this site and can only hope that I can return a small percentage, eventually.
  Bill, I loved your post, and you are absolutely correct. I do try and avoid the woe is me parade. At times it is a true challenge. You see I have had major health challenges before. March 5, 1999 was my last day working as a Police Officer. While responding on ' An Aided Case' assignment, I was involved in a head on MVA. I was airlifted by helicopter because I broke my neck, and at the time, partially paralyzed. Surgery helped with paralysis (decompressed nerves) but I wound up with permanent nerve damage, and many other problems.
  It was during my long rehab that I came up with my 'handle' which I use to this day. Your reference to serenity brought a smile to my face, for I too have used this as an inspiration for dealing with life. My handle of sirenet is for;  Sir-en-E-T. (serenity). I have been using it since '99.
  Your story about your friend Mike was truly inspiring also, thanks for sharing. We have 'spoken' lately and I am aware that you are dealing with your own difficulties right now.  I hope that you have begun to feel somewhat of a relief and a sense of heading in the right direction. Wishing you well.
  

  Debi, you have been generously offering support and insight for awhile now, and I thank you for your kindness.
  
  Tara, Srm6598, and artskip -  thank you for your care and support. I wish each and all the best in health for whatever conditions you may be challenged with yourself... -Steve
Helpful - 0
Avatar universal
It's really hard to accept, but sometimes what we were, is no longer. I look at the past and wonder what happened to me, I used to be another person. Unfortunately so many of us for many different reasons, have to learn to start over. It's a minute by minute struggle some days. We may never know why these things happen to us or our loved ones,but we have to fight every day to stay in the game. Life is a constant adjustment.
Have you consulted with other EP's? I don't know about that medication but it seems you need to get another opinion, even just for your own peace of mind.  N.Y. Presbiterian hospital, in manhattan, have some of the best EP's around. My friend just had a double valve replacement there, and she's doing well, 3 months after the surgury she's out walking her dogs. She's not what she used to be but she's adjusting.
Helpful - 0
Avatar universal
Steve... wow.... I can only say that I am sorry for you. When I read your post you know what popped in my head? "If this guy had not been in such good shape he might not be here at all" So, my hat is off to your good habits.  Your wife must be worried sick too.

Bill- I loved your post. At times like these prayer can be the only thing to hang on to.

I will pray for you and your family Steve.
Helpful - 0
Avatar universal
Hi Steve,
I was started on Sotalol at home. My cardiologist said he always starts people at home. I had no trouble with it. I am so sorry you have to go through this. I was feeling bad myself today and wondering why I have DCM-it gets depressing, I know. I am thinking of you and praying for you-I do believe things will improve-you are in my thoughts-Debi
Helpful - 0
Avatar universal
hang in there buddy.  First off, as I'm sure you know, you did not "go from being productive to being reduced to being predominantly bedridden" within 4 months.  As you said, you had been "blaming many symptoms on past injuries and just trying to work through pain/etc".  I'd put good money on your having had symptoms for years.  

Bottom line here is that you can either go with it or climb on the pity pot.  Pray the serenity prayer.  My version is for "courage to change what I can, serenity to accept what I cannot and wisdom to know the difference". Pray for wisdom.  Pray that Creator God lets you know what is fixable and is not.   Pray that what can be fixed is fixed and that you have the courage and strength to undergo what is needed to fix it.  Most of all pray for serenity to accept the situation as it is.  

I remember the story in the New Testament about a very dynamic preacher who had a significant medical problem.  We are not told what it was but it bugged the man terribly.  It bugged him so much that he prayed for healing - many times.  Finally he got an answer.  God told him "My grace is sufficient for you."  In plain language the Apostle Paul was told to "Shut up and live with it."

Shutting up and living with it is hard.  I know it because I am a "fix it if it can be fixed" kind of guy.  When I get to  feeling low I remember a friend of mine - gone over a decade now.  Mike was a good guy; a regular Joe.  He hurt his back at work, went on Workman's Compensation and had load of hardware installed in his back.  The surgery went OK and even though the operation the cutter performed was a tad experimental he got better.  Now in Texas, Workman's Comp has a policy of sending people to therapy for what is called "work hardening".  That is exercises to build up muscles to reduce the likelihood of a similar injury in the future.  While In "work hardening" Mike ripped out a bunch of the screws.  He got steadily worse.  Had to walk with a walker and could barely raise his foot high enough to clear a threshold.  But he kept his spirits up.  Always had a smile and an encouraging word.

Finally the state authorized a 2nd surgery on his back.  During that procedure something went wrong.  He had a reaction to the drug coctail they used on him and oxygen was cut off to his brain.  When he came out of recovery he could no longer walk.  Worse he had lost the power of speech.  He could understand spoken language, he just couldn't coordinate his vocal cords, mouth and tongue and all to speak.  For the last 4 years of his life he could only make inarticulate sounds.  

I came to know him after his 2nd surgery.  Finally I got some people together and we raised the money for a small PC.  I built the machine, loaded the operating system and some software including a text-to-speech program and we gave it to Mike.  No, we didn't have a Speech Pathologist or anything fancy.  Heck, the computer was only a 386 running Windows and the text-to-speech program was primitive.  But it worked.  I showed Mike how to type in the words and make it talk.  The first thing he "said" after of two years of not being to speak was to tell his wife he loved her.  The 2nd thing he said was "I sound like Robby the Robot."  He went on to use that little computer to encourage others.  Somebody gave him Printmaster or suchlike and he was always giving others "Cards from Mike".  He got down at times.  Cried on my shoulder a few.  Railed at the world for what happened to him.  But he never gave up.  Finally his wife could watch him suffer no more and told him he could go if he wanted.  He was dead within a couple of hours.  I helped carry him to his final rest.  

When I get low I think of Mike.  If he did not give up how can I?  If he could keep going on how can I not?  How can I do less than Mike?  

Hang in there, buddy.  Pray for serenity.

Bill
Helpful - 0
454966 tn?1225158761
Hi Steve,

I read your post and I feel horrible for you!! I have not went thru something quite that bad but just about. I know how you feel. I can't even take beta blockers or anti arryhthmics(sp?) because I'm deadly allergic to them.

I suffer from pvc's,pac's,svt,runs,every day since 1998. My health also went from perfect to this over night. I'm just so thankful every day when I wake up. I just thank God! I'm always short of breath and have terrible panic attacks from all of this.

I will be praying for you everyday , please feel free to email me anytime you want to chat.

You're in my thoughts,

Tara
Helpful - 0
391561 tn?1227047215
Hi Connie,
   Thanks for your care and support. I realize the importance for a positive mental outlook, but I have tried to dig deep to be up to the task. I imagine that it is how rapid the deteriation has been, has left me little time to adjust before the next hit.
  Hate complaining, but trying to hang in there until this all becomes more bearable. Thanks again, Steve   ( I hope that you yourself do well, If I remember correctly, you have important tests yourself this week, don't you? - Good luck )
Helpful - 0
21064 tn?1309308733
Hi Steve,

Sorry, I don't have any experience with amiodorone.  I was, however, admitted to the hospital to start on tambacor.  If you decide to go for the sotalol, the 2-3 days is just for monitoring, right?  No tests!

I wish I had more answers for you; I know how frustrated you are.  I hope that you and your doctors will find what helps most and that you get back to your former level of good health.  Any idea if the meds are working at improving the CHF, CM?  The ICD should keep the VT in check, so maybe you're past one hurdle.  

You're in my thoughts and prayers.
connie

Helpful - 0
Have an Answer?

You are reading content posted in the Heart Rhythm Community

Top Arrhythmias Answerers
1807132 tn?1318743597
Chicago, IL
1423357 tn?1511085442
Central, MA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Are there grounds to recommend coffee consumption? Recent studies perk interest.
Salt in food can hurt your heart.
Get answers to your top questions about this common — but scary — symptom
How to know when chest pain may be a sign of something else
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.