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JoAnna Find out more about JoAnna
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  • Amiodarone

    I have just stated taking Amiodarone yesterday. I went back into Afib after being cardioverted. I only stayed in sinus for one week. I have been reading all the past posts on this medicine, and I am so worried. The side effects sound so scary. My doctor was honest with me about all the possible side effects, but he thought it was still the best medicine for my condition. He is having me do tests for my lungs, liver, kidney function, and will be keeping an eye on things. He wants me on it for a month - 6weeks, and then I go back and see him. He says he will schedule another cardio version depending on how things look. Well of course, all the questions start popping in my head once I get home instead of in his office. Does anyone know if the amio is supposed to just keep you out of afib, or can it actually convert you out of afib? It seems like I have not had any afib symtoms at all today, and I only started taking it last night. I am starting on 400mg 2xs a day for two weeks, and then 200 mg 2xs a day for 1 week, and then 200 1x a day. I have to say I feel great today. I haven't tried excercising or anything, but I have not felt any SOB at all, which I usually do just cleaning the house or walking to the mail box. Could it have such a quick effect? I am curious to see if I will have to have another cardio version, and will I have to stay on this medicine. I guess time will tell. I get the feeling I will continue to go back to afib without any help staying out of it. I guess it's just a sign that HCM is starting to affect me more than it has in the past. I was depressed today wondering of how it will affect me more in the future. I am scared of the medicine's side effects, and I am scared of this condition. I know I have to take it day by day, and not worry about tomorrow. I am so greatful for this website, and all of you that help me through mentally rough days like today. Is it a coincidence that I just found this website shortly before things started to change with my HCM?
    Thanks for being here.
    JoAnna

  • #2
    Amiodarone can convert you to normal sinus rhythm w/o cardioversion. It is used to convert, and also to keep in rhythm after cardioversion.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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    • #3
      Hi JoAnna - I was put on this drug in Cleveland after i went into Afib also. the dosage is similar to what you mentioned. the first week i was on 3x200 then now for a week i am on 2x200 and then next week i am on 1x200 for 3 weeks.

      From what i was told it takes a few days to get into your system thats why the large initial dose or "Load dose" then on the back end it take 50 to 60 days to get out of your system. I don't think that it has kicked in already but my information could be off

      thanks

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      • #4
        Re: Amiodarone

        Originally posted by JoAnna
        I have just stated taking Amiodarone yesterday.

        I have been reading all the past posts on this medicine, and I am so worried. The side effects sound so scary.

        Could it have such a quick effect?

        I am scared of the medicine's side effects, and I am scared of this condition.
        Hi JoAnna,

        As you've no doubt seen, there is a lot of debate here on the use of amiodarone. As it was explained to me, HCM patients tend to respond to this drug better than most anti-arrythmics. The side effects can be serious and dramatic, but your doctor seems fully aware of this.

        I've been on it since February, and apart from some initial discomfort during the "loading phase," it has worked very well for me. I had a constant, low-level headache and nausea that came and went for about 2-3 weeks. But I did find I had more energy and didn't get winded so fast. I should caution you, though, that no anti-arrythmic drugs are 100% effective and you could still experience an episode with AF. I had one a few weeks ago.

        Try not to worry so much about what might or might not happen. I have the same concerns about the side effects, as well as fears that the drug will be ineffective, and my doctor said we'll cross that bridge when we come to it.

        -- Tim
        Life is a banquet...and I got botulism! -- Me

        If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

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        • #5
          Dear J,

          Yes, "amio" is strong and can convert you all by itself. If it worked that fast, that is a good sign that you are responsive to it and it should keep you in sinus (normal) rhythm really well.

          They may back your dose down a bit so they can give you the least amount while staying in sinus.

          Yes, amio has some major side effects but so does afib (heart attack and stroke), so you have to weigh the cost/benefits.

          It is all scary but a quick conversion is really great. You can take your pulse at your wrist and you should be able to tell if you are in afib or not.

          take care,

          S

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          • #6
            Hi Joanna,

            Sorry to hear what you are going through. I had experience with amiodorone post myectomy like Vinnie. Took a huge loading dose each time at 1200mgs , then tapered down as you report . The first time I converted with the med after 21 hours and the second they did not wait as long, 14 hours and they converted me. I stayed on the 200mgs til the end which was a total of 3 months. I was also very upset/ nervous about all the effects , but your doctor has done the baseline testing and looks like he is very well prepared and will be monitoring you closely. He sounds like a good guy!

            I did have a low lying constant nausea from it and that went away gradually after I stopped taking it. I think it made my sense of smell so acute that many things were unappealing. It was a great weight loss reducer drug for me. I did not get sick but actually would have to force myself to eat. Once I tasted something it was fine but the idea or thought of food seemed to turn me off. This does not happen to all people as you can see. I have been off it since 2004 and had no further A-fib. My a-fib appears to have been related to surgery. There are others who have been on it long term and report no adverse reactions.

            Try hard to relax and just go through it as best that you can. It is natural with all the controversey to feel great concern. Try to focus on the day that you will get off it. I am also a strong believer in forcing my mind to think as much positive as possible. For me this approach has gotten me through some very difficult times. Maybe I am just delusional , but I do think that a positive mental attitude can make a very big difference in how things work. I have always been amazed at the "placebo effect" , which plays right into my theory.

            My best to you. I am sure you will here from some long termers who use amiodorone with success.

            Pam
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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            • #7
              Thanks all for your input. I feel better. I am in day 4 of taking the meds, and I still feel like I am in sinus. That is a good thing. I even went to a festival and walked about 2 miles without any shortness of breath or anything ! But I am experiencing pretty bad indigestion. ( I didn't eat any junk food at the festival) so it couldn't be that But it's pretty strong. It started yesterday. I could not sleep last night and had to prop myself up with pillows. I can really feel discomfort when I press on my upper stomach. and it's hard to take a deep breath. I'm not sure it is a side affect of the Amio or not. A few years ago the doctors thought I might have a hiatal hernia, but I never really had bad symptoms. Last night was really the first time I experienced such strong indigestion so I thought it might be related to the amio. Malox helps a little. I was kind of scared when I had to prop myself up with pillows because that's what my cariologist always asks me to see if I am in CHF. I'll make sure and call him if this persists.
              JoAnna

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              • #8
                Update on Amio

                Since my last post, I have seen my doctor regarding the affects of the amio. I started having a really intense burning in my chest, sort of where my esophagus is and then through my back like under my shoulder blades. I thought it was indigestion, but came to the conclusion "this was no normal indigestion" It was like 100 xs worse than anything I've ever experienced. I cut my dosage in 1/2 and started to feel better the next day. I saw my doctor the day after that. By then the pain had just about stopped completely. He said I did the right thing, and told me to continue this dosage for a week and then reduce it again. The good thing was that the ekg showed I was back in sinus. I felt like I went back to sinus the day after I started taking the Amio, but I was ready to stop it if it kept making me feel so sick. Now I feel good again, and have no afib. I guess the initial loading dosage was too strong for me. My doctor didn't seem to be too concerned about the burning. --Easy for him, he wasn't the one in pain. He said it was probably just indigestion from the meds, but it felt like something so much more. I've never had a feeling like that. I love my cardiologist, but sometimes I feel he takes me too lightly, like I'm over-reacting. Sometimes I feel like I have to fight to be heard. I know this is probably routine for him, and I'm not his only patient, but this is all new to me, and I am scared at times. I am glad I listened to my body and followed my instinct of reducing the dosage instead of waiting to see him. It's important that we listen to our bodies, not just our doctors.
                JoAnna

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                • #9
                  No one is more expert in you than you are. I've had doctors tell me the wrong thing over and over and write the wrong orders and pooh-pooh my symptoms. I once was totally incapacitated from dizziness the entire day and my doctor was like, oh well, unless that is happening every day, there is no need to change your meds. Um, hello?

                  I never take anything these days unless I've researched it and then (unless I'm in a critical situation) I take half my dose (b/c I'm petite and because historically, I only need about half an adult dose of anything) and work up.

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                  • #10
                    Joanna ,

                    So glad things are going better for you. Now stay in NSR!!

                    Pam
                    Dx @ 47 with HOCM & HF:11/00
                    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                    Lead failure,replaced 12/06.
                    SF lead recall:07,extracted leads and new device 2012
                    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                    Genetic mutation 4/09, mother(d), brother, son, gene+
                    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                    Comment

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