If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Amiodarone

Collapse

About the Author

Collapse

Labbey Heart transplant on September 15, 2008 Find out more about Labbey
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    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.
    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.

    Comment


    • #17
      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.
      diagnosed at 19. Open heart surgery at 23. Myectomy unsuccessful, but replaced damaged mitral valve, pacemaker, Icd at 36, evaluated for heart transplant at 39.

      Comment


      • #18
        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

        Comment


        • #19
          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.
          diagnosed at 19. Open heart surgery at 23. Myectomy unsuccessful, but replaced damaged mitral valve, pacemaker, Icd at 36, evaluated for heart transplant at 39.

          Comment


          • #20
            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
            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


            • #21
              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

              Comment


              • #22
                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
                im 20 years old with hcm and just been told i need a heart transplant

                Comment


                • #23
                  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
                  49 yrs. old
                  Diagnosed at 31.
                  Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                  First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                  Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                  Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                  My brother passed away suddenly at 34 yrs old from HCM.
                  2 teenage children, ages 17 and 15.

                  Comment


                  • #24
                    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
                    Reenie

                    ****************
                    Husband has HCM.
                    3 kids - ages 23, 21, & 19. All presently clear of HCM.

                    Comment


                    • #25
                      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!!!!!!!
                      diagnosed at 19. Open heart surgery at 23. Myectomy unsuccessful, but replaced damaged mitral valve, pacemaker, Icd at 36, evaluated for heart transplant at 39.

                      Comment


                      • #26
                        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?
                        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

                        Comment


                        • #27
                          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
                          Reenie

                          ****************
                          Husband has HCM.
                          3 kids - ages 23, 21, & 19. All presently clear of HCM.

                          Comment


                          • #28
                            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]
                            49 yrs. old
                            Diagnosed at 31.
                            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                            My brother passed away suddenly at 34 yrs old from HCM.
                            2 teenage children, ages 17 and 15.

                            Comment

                            Today's Birthdays

                            Collapse

                            Working...
                            X