I have been put on amiodarone to control ventricular tachycardia, I also have A-fib and congenital heart disease. The amiodarone seems to have stopped the arrhythmias but I feel absolutely terrible. I feel totally down and depressed and I seem to keep crying all the time, I have nasty headaches with lots of pressure in my head. I am having trouble breathing and just feel awful - I can't really describe it but I don't feel right.
Has anyone else been on it and if so what side effects did you have, how did you feel?
I feel that no one understands how I feel but I've never felt so unhappy as I do now.
NHone
02-24-2006, 12:39 AM
Hi,
I have been put on amiodarone to control ventricular tachycardia, I also have A-fib and congenital heart disease. The amiodarone seems to have stopped the arrhythmias but I feel absolutely terrible. I feel totally down and depressed and I seem to keep crying all the time, I have nasty headaches with lots of pressure in my head. I am having trouble breathing and just feel awful - I can't really describe it but I don't feel right.
Has anyone else been on it and if so what side effects did you have, how did you feel?
I feel that no one understands how I feel but I've never felt so unhappy as I do now.
Usually don't get to this board, but i saw your post. My mother recently had by-pass surgery. I requested a list of the medicines that she was on and was OUTRAGED that her doctor put her on amiodarone. Your symptoms are real and they are VERY SERIOUS!!!!!!. The FDA issued an alert for amiodarone in 5/2005. "AMiodarone may cause potentially fatal toxicities, including pulmonary toxicity, hepatic injury, and worsened arrhythmia" Also according to FDA med watch there were 452 deaths attributed to amiodarone between 1997 and 2002, also 58 cases of blindness (non-reversible) also lung damage that could be permanent, with shortness of breath. THis medication is listed by the FDA as a medication that should only be given as a last resort. WHen you started on the medicine you HAD to be in the hospital according to the FDA and monitered very carefully. IT is required that you were given the warning information sheet on amiodarone when it was given to you. In fact now there are quite a few law firms who deal in lawsuits involving the adverse effects from amiodarone. I don't know your doctor...whether he is arrogant (as most) or willing to listen. But my mother's surgeon ,who is one of the most arrogant people put on this planet...said i could find anything on the internet and I was wrong. I said fine, I suggest you look up the name of your mal-practice insurer. He shut up and refused to talk to me , ...but took mother off of the amiodarone... Guess that is all i wanted. also you could be low in magnesium. That could be some of your problem..you need to have an intracellular magnesium test..not the regular serum test, because magnesium is mostly intracellular. If you doctor says I'm wrong...tell him to prove it. HE CAN"T Note: food tasted awful to mother while on this medication. She said she couldn't describe it but food just didn't taste right. Also her fingers were starting to tingle, and she was very depressed. Hope this helps, and good luck.
Kathy C
03-02-2006, 12:16 PM
Amiodarone is used for a variety of things. In Canada it is usually one of the first drugs used with arrhythmias cause it works the best. While taking this I hope you are getting regular breathing test, liver and thyroid test, and eye exams. YOu might just be on too high of a dose.
NHone
03-02-2006, 06:41 PM
Amiodarone is used for a variety of things. In Canada it is usually one of the first drugs used with arrhythmias cause it works the best. While taking this I hope you are getting regular breathing test, liver and thyroid test, and eye exams. YOu might just be on too high of a dose.
If it is one of the first drugs used in Canada because it is the best, that logic is ABSOLUTELY INCORRECT. IT is to be the medication of last resort when all others have failed. UNDER NO CIRCUMSTANCES is it to be initiated anywhere except in the hospital.
Lindsay:-)
03-03-2006, 04:41 PM
Hi,
Thanks for all your replies, I have relaxed a little bit about it now, I am most paronoid about my eyes but I haven't had any problems other than a bit of blurry vision which seems to be worse on some days than others but I am short sighted as well and have astigmatism so I put it down to that and being tired, I have no problems with peripheral vision but I think I will got for an eye test every 6 months just to put my mind at rest.
I have managed to find a dose that gets rid of the side effects but just keeps the arrhythmias under control, I have cut it down from 200mg to just over 100mg. I also know someone who has been on it 20 years and he has had no major problems with it so that was reassuring.
The only thing I have really noticed is that my skin is alot more sensitive and my hand got sunburnt the other day on a really bright but freezing cold day, and my eyes are a bit more sensitive to light but that is about it.
I am hoping to have a pacemaker fairly soon so I will be able to come off it :)
There is a 6 month waiting list but the doc said he is hoping to get it done in a couple of months, even if it takes 6 months I know I can come off it soon so that makes me feel a bit better. I still hate taking it though.
I think I am more scared of what it might do than what is actually is doing, I too looked it up on the internet - BIG MISTAKE, I have found articles that say there is no significant evidence linking amiodarone to blindness and that you do get other symptoms before anything major happens to your eyes so if the medication is discontinued as soon as anything changes then you should be ok.
Lindasy
cdaus
03-03-2006, 10:32 PM
For myself I wouldn't take it long term. I would be looking for alternatives, such as cardioversion. This drug is the typical double-edged sword.Hi,
Thanks for all your replies, I have relaxed a little bit about it now, I am most paronoid about my eyes but I haven't had any problems other than a bit of blurry vision which seems to be worse on some days than others but I am short sighted as well and have astigmatism so I put it down to that and being tired, I have no problems with peripheral vision but I think I will got for an eye test every 6 months just to put my mind at rest.
I have managed to find a dose that gets rid of the side effects but just keeps the arrhythmias under control, I have cut it down from 200mg to just over 100mg. I also know someone who has been on it 20 years and he has had no major problems with it so that was reassuring.
The only thing I have really noticed is that my skin is alot more sensitive and my hand got sunburnt the other day on a really bright but freezing cold day, and my eyes are a bit more sensitive to light but that is about it.
I am hoping to have a pacemaker fairly soon so I will be able to come off it :)
There is a 6 month waiting list but the doc said he is hoping to get it done in a couple of months, even if it takes 6 months I know I can come off it soon so that makes me feel a bit better. I still hate taking it though.
I think I am more scared of what it might do than what is actually is doing, I too looked it up on the internet - BIG MISTAKE, I have found articles that say there is no significant evidence linking amiodarone to blindness and that you do get other symptoms before anything major happens to your eyes so if the medication is discontinued as soon as anything changes then you should be ok.
Lindasy
Kathy C
03-04-2006, 03:31 PM
Cardioversion is a short term answer. Providing it even works. Drugs or ablation and possibly a pacemaker are long term solutions.
Lindsay:-)
03-04-2006, 06:05 PM
Hi All,
Thanks for replying, Cdaus - I have only been on it since November and am going to have an ICD pacemaker put in, hopefully soon, I certainly don't intend to be on it for another 6 months. I know what you mean about a double edged sword though.
I have been reducing it and when I don't take enough for a few days I get my palpitations and arrhythmias back as well as chest pain, I can't seem to win but to be fair to it, it does stop the VT's.
I have to stop it for a month before I have the pacemaker so who knows what I'll feel like when I don't take it. :confused: :bouncing:
Lindsay
cdaus
03-04-2006, 11:14 PM
My husband had cardioversion in 2003. He continued amiodarone for a few weeks after that as a back up and then was taken off of it. As of today he is still in rhythm and doing fine and is only taking his Altace for BP. I think you will be doing fine!Hi All,
Thanks for replying, Cdaus - I have only been on it since November and am going to have an ICD pacemaker put in, hopefully soon, I certainly don't intend to be on it for another 6 months. I know what you mean about a double edged sword though.
I have been reducing it and when I don't take enough for a few days I get my palpitations and arrhythmias back as well as chest pain, I can't seem to win but to be fair to it, it does stop the VT's.
I have to stop it for a month before I have the pacemaker so who knows what I'll feel like when I don't take it. :confused: :bouncing:
Lindsay
Lindsay:-)
03-08-2006, 12:45 PM
Hi,
I spoke to the lady at the hospital yesterday, she does the waiting lists for pacemakers and procedures and she said I am at the top of the list and should have it done on April so I should be able to come off the amiodarone soon as well. Finally something might be going right! :) :p
Lindsay
NHone
04-21-2006, 02:46 AM
Hi,
I spoke to the lady at the hospital yesterday, she does the waiting lists for pacemakers and procedures and she said I am at the top of the list and should have it done on April so I should be able to come off the amiodarone soon as well. Finally something might be going right! :) :p
Lindsay
If your still interested in the amiodarone, i accidently found that it is one of the 12 compounds (medications) that can cause SEVERE lipid lisorders. It can/and does cause symptoms of Niemann Pick disease (which is genitic). It acts on the same protein NPC1 as that of Niemann Pick. Also the half life of this medication is absolutely awful....26-107 DAYS!!!!!!. It is not eliminated through the feces and urine, but through the shedding of skin and intestinal cells. No wonder my mother is having a horrible time.
lane413
06-08-2006, 08:29 PM
Finres, is this the brand name of the drug? Is it used for hbp or what disease. I did some research today and discovered the same thing applies to verapamil. it also stated that verapamil depresses insulin. My mom has been on verapamil for eight yrs.
Is this drug amiadorone(sp?) a ccb?
ace8484
07-06-2006, 06:04 PM
Finres, is this the brand name of the drug? Is it used for hbp or what disease. I did some research today and discovered the same thing applies to verapamil. it also stated that verapamil depresses insulin. My mom has been on verapamil for eight yrs.
Is this drug amiadorone(sp?) a ccb?
Amiodarone is a Class III antiarrythimic drug. It's brand names in the US are cordarone and pacerone. It is used to treat ventricular arrythmias such as ventricular fibrillation and ventricular tachycardia.
Verapamil is a calcium channel blocker used to treat hypertension, angina, and arrythmias(atrial flutter/atrial fibrillation). In the US its brand names are Calan, Verelan, Isoptin and Covera HS.
squonk123
04-09-2007, 09:47 PM
How long before this drug is out of your system? My dad has been on it for 13 months, finally removed, and suffering incredible side effects (no lung damage thankfully). When will his condition improve?
sweetsurrender1
06-13-2007, 03:30 AM
Usually don't get to this board, but i saw your post. My mother recently had by-pass surgery. I requested a list of the medicines that she was on and was OUTRAGED that her doctor put her on amiodarone. Your symptoms are real and they are VERY SERIOUS!!!!!!. The FDA issued an alert for amiodarone in 5/2005. "AMiodarone may cause potentially fatal toxicities, including pulmonary toxicity, hepatic injury, and worsened arrhythmia" Also according to FDA med watch there were 452 deaths attributed to amiodarone between 1997 and 2002, also 58 cases of blindness (non-reversible) also lung damage that could be permanent, with shortness of breath. THis medication is listed by the FDA as a medication that should only be given as a last resort. WHen you started on the medicine you HAD to be in the hospital according to the FDA and monitered very carefully. IT is required that you were given the warning information sheet on amiodarone when it was given to you. In fact now there are quite a few law firms who deal in lawsuits involving the adverse effects from amiodarone. I don't know your doctor...whether he is arrogant (as most) or willing to listen. But my mother's surgeon ,who is one of the most arrogant people put on this planet...said i could find anything on the internet and I was wrong. I said fine, I suggest you look up the name of your mal-practice insurer. He shut up and refused to talk to me , ...but took mother off of the amiodarone... Guess that is all i wanted. also you could be low in magnesium. That could be some of your problem..you need to have an intracellular magnesium test..not the regular serum test, because magnesium is mostly intracellular. If you doctor says I'm wrong...tell him to prove it. HE CAN"T Note: food tasted awful to mother while on this medication. She said she couldn't describe it but food just didn't taste right. Also her fingers were starting to tingle, and she was very depressed. Hope this helps, and good luck.
sweetsurrender1
06-13-2007, 03:32 AM
I just need to let poeple know how dangerous amiodarone is. It almost just killed my husband . It was the one medication that we never thought to read up on or suspect when he started getting tired , weak, diarrhea ,numbness etc . Then finally he ended up in ICU with multiple organ failure. Doctors were at a loss and thought he had end stage liver disease and I was told to expect the worst and soon. His lungs also appeared to be just about had it . As a last resort they discontinued the amiodarone and gave him steroids and suddenly there he is looking around and talking again, and his lungs magically cleared right up .This JUST happened so who knows what lies ahead after his body was stressed like that but for now I have him back again and I want to spread the word that this drug should ONLY be used as a last resort and the patient should be monitored for changes the entire time .
sweetsurrender1
06-13-2007, 04:06 AM
Last one showed up twice so I deleted this one
sweetsurrender1
06-13-2007, 04:23 AM
I was in such a rush to post after signing up and things that I didn't really get a chance to read other people's posts . Alot of what others are complaining about is what my husband went through . I will list the obvious signs from a few months back til now .He has only been on Amiodarone for about 6 months . First sign was constant diarrhea, then tiredness , weakness, cold hands and feet , bluish nails at times , losing sense of touch in fingertips , rarely able to detect oxygen saturation through finger ( chalked up as his hands being too cold) , then worse weakness and tiredness , slurry voice at times( blamed on low potassium) , weak voice at times , nausea , loss of appetite , confusion and forgetfulness , strange behavior , easily bruising , unusual pain upon touch , then skin breakdown , seizure like actions and semi coma like state , yellowing of eyes and skin, etc . Of course by the time symptoms became severe he was already hospitalized .He got there just in time . His symptoms were gradual before then and thought to be low potassium and depression til blood test alerted doctor . His liver went downhill, his kidneys, lungs, even his skin and possibily his brain. If it weren't for comparison xrays showing how quickly his lungs became diseased looking then he might not have been taken off the amiodarone and put on steroids to save his life . At this moment I pray that the damage , if any , hasn't been too much for him . I hope he will be ok tomorrow and every day after that .I am just glad that I never signed any DNR orders as suggested by doctors and other staff thinking he was end stage organ failure (namely liver) to let him go "peacefully" whereas he was always showing signs of pain and was only expected to live for just days. Remember, a family knows their own best and knows what is best for them . Don't let anyone guilt you into anything because they don't have any right to . Let your heart be your guide and research everything and always look for the obvious such as medications or new lifestyle changes.Hope this helps someone .
Kaylen1978
12-05-2007, 09:33 PM
I really can't remember what I was like while on this medication back in November / December 1992, but I know it was used as a last resort. I had atrial fibrillation for which I had a cardioversion done, with it coming back to AF a week later.
Granted I was also on other meds as I was in congestive heart failure and had cardiomyopathy, and was on the transplant waiting list at the time . . .