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Amiodarone

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Labbey Heart transplant on September 15, 2008 Find out more about Labbey
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  • Eileen2345
    replied
    Lisa A.,

    I am so sorry, I just saw your post to me.

    I totally admit, I am not compliant when it comes to certain medication. I just live with the problems, because many times it seems to me that you trade one symptom for another.

    But then again, I have an ICD. So like the doctors said when I was in the ER with arrhythmias, "you are equipped if anything happens."

    Across the street from my father-in-law there is a woman, her skin in blue-gray. She is blueish. She looks so terrible. She is on Amiodarone. I saw her and thought "Holy Toledo" no way.

    But that is the way I am, do not do what I do.

    I have v-tach and a-fib, I live with them, because BBs and CCBs don't help them.

    The A fib is quite bothersome also!!!
    I know how you feel, it bothers me too. But I am a stubborn person that really dislikes side effects.
    I talk to Jesus when an arrhythmia hits.

    You could try Norpace, I read that it has less side effects than Amiodarone.

    Please don't do what I do, talk to your doctor.

    I hope everything is good with you now.

    Hugs,
    Eve (Eileen)[/code]

    Leave a comment:


  • Reenie
    replied
    Well, if Dr Maron is the one who put you on it, I wouldn't be concerned about it at all. He knows more about this disease than almost anyone in the world and if he thought your case warranted it, stick with it.

    Reenie

    Leave a comment:


  • BlueDevil
    replied
    OK, I've been on amiodarone for three weeks now. It has helped tremendously, though I did have some headaches and nausea that I now think were attributable to something else (i.e., sinus issues). The insomnia is still a bother. Tomorrow I start taking a lower dose (200mg). I'm supposed to have a blood test next week to screen for problems associated with its use.

    Having read all the posts about this, I am curious about one thing.

    If this is truly considered a "last resort" drug, then why in the **** am I on it? This is the first and only antiarrythmic I've ever been prescribed, not counting what I had the two times I was in the ER for AF. I was given IV amiodarone for my first serious AF episode in September, and I was given Esmolol in December.

    I didn't have the presence of mind to ask Dr. Maron or his clinical scientist why I should be put on this drug instead of something else. So, should I be concerned?

    Leave a comment:


  • Labbey
    replied
    Re: Amiodarone

    Eilleen,
    Hi there. Just a quick question. Since you refused the amiadarone, were you given other choices?

    I was told I am on this because I have both arrythmias, V tach and A fib.

    What are you going to do? I like the idea of being on a drug that can help prevent both of these, especially the defribillator going off. Gosh I hate that! The A fib is quite bothersome also!!!

    We all know this! What to do, what to do. I just want to feel better!!!!! And not be on amiadarone!!!! How is that. Just what everyone else wants right?

    I would love to be able to be normal enough to get thru a work day. I
    just never feel so good for 8 hours at a time. Even when I went to half days, I still started feeling so bad. That is so sad that as a secretary 4 hours of work is too much!!! So that is why I am dealing with disability.....

    Thanks for any info.!!

    Take care,
    Lisa A.

    ps.To Bennett, I am sorry you were told that and am so sorry the drugs are no longer working, I feel I may be coming into the same boat. I have been told by 2 cardiologist that they see me getting a transplant down the road also. Gosh where are all these hearts going to come from! I want them to fix the one I have!!!!!!!

    Leave a comment:


  • Reenie
    replied
    Re: Amiodarone

    Well, the ICD is to protect against potentially fatal arrhythmias. At this point an ICD can't do a lot for A-fib or other non life-threatening arrhythmias. It's job is to simply pace or shock the heart out of the arrhythmia. The amio is to help keep the arrhythmias from happening in the first place. There are other drugs that are supposed to do the same thing. Just wanted to be sure all understand the limits of the ICD versus the pros of the medication.

    Reenie

    Leave a comment:


  • Eileen2345
    replied
    Re: Amiodarone

    When I saw my new (soon to be old) cardiologist a few months ago, she wanted to put me on Amiodarone. I came home looked it up on the internet and told the doc no way.

    (My opinion is that I would not take Amio if they paid me.)

    I kinda thought that the reason why we have these ICDs is to help with the arrhythmias (?) so that we do not have to take such drastic medication.

    This is just my opinion, I hope I didn't open a can of worms here.

    Hugs -- Eileen

    Leave a comment:


  • bennett
    replied
    hi

    hi im on amiodarone 200mg once a day though been takin it since i was 17 im 20 now i just been told i need a transplant because they say it is gettin worse for me i hope everything goes well for u though

    Leave a comment:


  • Sarah
    replied
    Re: Amiodarone

    Dear Lisa,

    I, too, can't take calcium channel blockers. Potassium blockers are what work best for me and I take a beta-blocker too.

    Pam is right--medicine has come a HUGE way in ten years. You owe it to yourself to make sure there isn't something that can be done.

    Take care,

    Sarah

    Leave a comment:


  • Pam Alexson
    replied
    Re: Amiodarone

    Lisa,

    Hi . Sorry I have not gotten to your e-mail yet , I will been out straight these past few and stomach problems again.

    I think one thing that pops out in your post is that you were at NIH many years ago and then they were not able to do a myectomy. Lisa a lot has changed in the HCM specialty world in those 10 years and so has your heart. Now wouldn't it be something if maybe there is something that could be done and the heart transplant does not end up being the next thing you have to do.

    Please , please consider that different set of eyes and additional opinion. Your present condition may not have been fully appreciated.

    Talk to you soon as I can.

    Pam

    Leave a comment:


  • Labbey
    replied
    Re: Amiodarone

    Hi Sarah,

    I just want to say thank you so much for the information you have for me. I appreciate it so much.

    Just so you know, I do have an ICD/pacemaker, have had it for 2 years. Defribillator has gone off twice. I have seen a HCM specialist. And have seen many in the past, at the research hospital, NIH. Thats where I had my open heart surgery. Tried to do a myectomy was not succesful and ended up with a replaced mitral valve. Mine was shot due to the obstruction. This was when I was 23. I did okay for about 10 years and now things are acting up again! Thats the short version!!!

    I have written down the names of all those drugs you mentioned the postassium channel blockers. I did not know that is what amiadarone was under.

    I know those calcium channel blockers were terrible to me. They are great for a lot of people, I am not one of them. Made everything worse.

    You have made me think and I feel confident I may have some options. I don't like the idea of being on amio for too long. Thanks for the tips on side effects.

    I feel like I have been whining for days about this. I'm sorry!!!! I love the helpful information!!!

    Thank you again,
    Take care,
    Lisa A.

    Leave a comment:


  • Sarah
    replied
    Re: Amiodarone

    That sounds kinda weird to me since dofetilide is touted as amiodarone without the side effects. All three drugs (norpace, tikosyn, cordarone) are potassium channel blockers.

    If you are having vtach alot (and have other risk factors), you need an ICD, not just medication. Plain and simple.

    have you seen an HCM specialist? If you don't want to take amio or have concerns, don't let yourself be talked into anything you are uncomfortable with. You ultimately have to live with the condequences.

    Also, the thing with amio is that SOME of the side effects are reversible and others are not. If you go blind (2% chance), that is for life. any damage the sun poisoining does if you get sun poisoning from not wearing sun block constantly could be permanent. The list goes on and on. What he isn't telling you is that the only way to undo the damage is to lower the amio dose so then you are potentially back where you started.

    Also, my brother was on amio for just a few months and his thyroid has never recovered. He will take synthroid for the rest of his life.

    Take care and please see an HCM specialist.

    Sarah

    Leave a comment:


  • Labbey
    replied
    Re: Amiodarone

    Hi, Cynaburst ( i think I got that right, so sorry if i didn't!)

    I have tried sotalol, it did not work. I was so fatigued, blood pressure very low, and I had a terrible arrythmia, while on it.

    Bummer.

    I thought about what you said about your dad, and that the side effects may not be irreversible... I don't know that is so scary, I just don't know what to do anymore.

    i woke up with arrythmia last night again, even though I am taking amiadarone. This has me worried, it has never happened before on this drug. I was forced to take a xanax again, so I could relax and fall asleep. I know rest makes me feel better.

    I have also tried cardizem, rythmol, verapomil, and inderal.
    No luck......

    thanks for the information, I can never have enough.....
    Take care,
    Lisa A.

    Leave a comment:


  • Cynaburst
    replied
    Re: Amiodarone

    I am not sure that I buy that the side effects rarely occur, and I am also not sure that they are reversible once they occur. My Dad has been on amiodarone for 20 years and is now having severe irreversible side effects from it. I would stay off of it if at all possible. What about sotalol? Have you tried that one? It might work for you.

    Leave a comment:


  • Labbey
    replied
    Re: Amiodarone

    Hi Everyone,
    Thanks again for the informative responses. Just wanted to fill you in on what I was told yesterday by my regular cardiologist partner.

    I suggested going on Norpace or Tykosin, instead of amiadarone because I was worried about all the brutal side effects. He said those wouldn't work for me because they are great for A fib, but since I have v tach and a fib, I need a drug that will work on both of these parts of the heart.

    SO no luck in changing anything. I did change back to Toprol Xl instead of Lopressor. I felt the Lopressor did nothing. MY heart was beating very very hard. More like a pounding, I am sure you all get what I mean.

    This cardiologist said he did a study on amiadarone in New York City, and he feels it is the best drug for me and all my stuff. He says those side effects can occur, but rarely do. He was really stern on that amiadarone was the best for me. Even though I am only 38. I said I am worried about being on it for a lot of years. He said I will get tested for the lungs and liver and etc. If anything is happening and is caught early, they can fix it.

    He agrees with my regular cardiologist prediction of needing a heart transplant one day. I don't know how I feel about this. But that is 2 cardiologist who have said that....

    Shirley and Beverly,
    I am feeling for you! Good luck in everything. I am sure this is scary...
    Thinking of you both....
    So what does anybody think of what I was told, anyone ever hear of this type of explanation?
    thanks,
    lisa a.

    Leave a comment:


  • Glen Beamish
    replied
    Re: Amiodarone

    I did not require a hospital stay when I started Amio, I did go thru a loading process and then had to be tested right after that and then once a month for about 6 months and now I'm suppose to have a liver test every 3 months.

    Leave a comment:

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