Amiodarone

[GordonS]

I have been taking this drug since October 23 after a failed CV last July and the only side effects seem to be sensitivity to sunlight and some sleep disturbance. All blood tests come back within normal levels. I noticed at the beginning of April that my HR was back to normal levels even with a resting HR around 50-55 bpm and from my pulse checking appears regular. I stopped taking Bisoprolol at about the same time as I was struggling to get a decent HR on exercise getting breathless at about 110 BPM. I am going for an ECG tomorrow to see what's happening and if still in AF scheduled for a CV on Wednesday. If not in AF what are the chances of staying in normal rhythm. My BP is probably higher since stopping the beta blocker average 140/97

[TracyAdmin Partner]

Hello

You may find the following resource helpful? All our resources are available to download direct from the webpage: heartrhythmalliance.org/afa...

You may find the following of particular interest to you:

Amiodarone information sheet: api.heartrhythmalliance.org...

Atrial fibrillation (drug information) booklet api.heartrhythmalliance.org...

booklet

[Rainfern]

People vary so much in their responses to amiodorone. It’s regularly prescribed prior to cardioversion because statistically it can improve your chances of success. But it doesn’t work for everyone. I was taken off it after a second CV as I went back into persistent Afib just a few days later. I think it was just a stop gap while I waited for ablation. Hope all went well for you with the CV?

[GordonS in reply to Rainfern]

Thanks for responding, I was/ am still in sinus rhythm when I went so no CV obviously. They have delisted me for a CV but still on the list for a third ablation in due course. Waiting list apparently is about 12 months. I have an appointment to discuss 10/6 so need to get my questions ready.

[Rainfern in reply to GordonS]

It must be a really difficult decision having already had a couple of ablations. I’m prepared to have a second if need be in the future. But each time we have to sit through an account of all the risks, which is never encouraging! I don’t think I’d want to be on amiodorone long-term, but as you say that’s a discussion to have with the EP. All best with that.

[DawnTX]

hi Gordon I just found your note. I have not been on here much. We have had a lot of weather related disaster where I live in Texas that has kept me busy.

you were lucky that you were able to take amiodarone as long as you did. I was on it for four months, but I was miserable the whole time. I have a tendency to underplay at times to my doctor. I don’t know why, but when he saw me and saw how sick I was, he stopped me that day on the amiodarone. There was not a part of me not sick and I could barely move. I hurt so much. I can’t even describe or compare it to anything I’ve ever had oh even before I left the hospital I was having trouble. I was covered with a rash pretty much head to toe, including my head. Almost as soon as I stopped it within a day or so I felt like a newer person. I live with tachycardia from the beginning it never really stopped from my first visit with my EP in Florida. I only recently became aware of that. I definitely needed the beta blocker and he immediately put me on an anti coagulant. I had no idea of things to come or just how sick I was at the time. I don’t think my doctor did either.

My first cardioversion was not until I got to Texas in fact, almost a year after because the first doctor, I saw practically killed me and scarred me terribly to the point I could not have any other ablations at least with my EP here who saved my life by the way. I had a second cardioversion my first one lasted 3 1/2 weeks. The minute I opened my eyes I felt the difference and I smiled. It sounds crazy, but I felt that good right away. I had the giggles that might’ve been the hospital cocktail.

3 1/2 weeks does not sound like much but it was some of the happiest time I had in quite a while. Then just like that I was sitting on the couch and I knew the fun was over. I began to have flutter and palpitations again and just cried.

maybe you will be a lucky person and it will last with you at least longer than mine. if no one has told you yet though, because they don’t want to burst your balloon, cardioversions, etc., are temporary fixes like a Band-Aid and sooner or later it falls off. I have read some lucky people on here. I don’t know why they were so lucky. I’m happy they were, but I would not tell anyone they are forever. They scheduled me for another one and had things set up for me to go on tikisyn ? sp they were going to keep me for five days and monitor me 24 hours a day it is that powerful medication and can be dangerous. I didn’t care at that point I was ready. Unfortunately, when I woke up, they had to tell me things fails and everything‘s been canceled. In fact, it took three tries to get me back so to speak again I cried. I was so disappointed. My EP came in and took my hand and patted it. he looked into my eyes and told me we’re gonna fix this. It’s OK. I’ve got this. You’re not going anywhere.

there was nothing left for me no pacemaker for my issues. I describe it as being a Lego set that someone put together wrong. I have trouble with all four areas. I no longer have palpitations. I have flutter even now. Not very often.

I am blessed with an EP who thinks outside the box. While he was working on me and previous making plans for me, he devised way to save me and help me. he kept telling me I was special and unique. I thought it was just teasing me, but it turned out to be true. What he did with my heart had never been done. They had just started working on HIS pace bundling not that long ago he found a way to use it on me. I actually have three lines and all kinds of switches, etc. don’t ask me where they are lol. I have an app for my phone and they can take a reading on me anytime they want to no matter where I am as long as my phone is with me. I can request one if something doesn’t feel right to me, but I am monitored 24 seven I have my own tech, who watches over my readings. I had an issue one day that my EP brought me right in and they got the engineer on the phone who explained things even my doctor wasn’t aware of going on. I was fine evidently I saw something I shouldn’t have lol they understood it at the facility and it was part of everything being new less than three months. The beauty is my doctor is also an actual teacher of his specialty among other things because of this he has been teaching me. He and my tech said they enjoy doing this with me because they pay attention and pretty much understand what they’re telling me. It takes the fear out of things. I had not wanted a pacemaker, but I made a list of questions when I sat down with my EP he gave me answers before I ever asked my questions. OMG I am so thankful for him. he is honest and he has kind of lectured me a few times reminding me we have a lot of parts in our body not everything is heart related, but people dwell on it so much they blame the heart for everything.

I finally realized I had to get out of my head about it and stop thinking about it so much and it works my last numbers they showed me are from last June until the day I was with him. he told me there are people without pacemakers that would love to have what I have and it shows not to pay attention to different devices on your own because I saw completely different numbers. The percentage of having unhealthy heart rate was nil. The bad stuff was even lower. My ejection rate is in the 70s originally it was in the 40s. I have heart failure.

I know you didn’t ask all of this, but I want to show you how things can change going forward. I went from a fib which I didn’t think much about it. It was something I had heard about, but never thought about. That is until the night I woke up on the floor after smashing my face into the concrete, I still waited three days to go to the doctor. I was living in Florida and had an amazing Cardiologist and EP there. I have been blessed through this whole ordeal. I don’t know why but except for that one doctor in Houston everything has been a miracle and I have been treated like a princess. I am nobody, but you would’ve thought I was more.

don’t give up don’t stop asking questions and don’t just accept anything. If you were unhappy maybe you need a new doctor regardless of how difficult it will be. Every day they are working on more for us with a fib. There is no cure in case you didn’t know, and as I said right now it’s like a Band-Aid, but they are going for much more including what they did for me.

my EP presented my case at something he was attending in Dallas, Texas. They asked him to come there and teach their EP.s so that they could help and save more people. anyone that reads this please don’t give up.

just a picture of me before I left Florida so it’s about two years old

[GordonS in reply to DawnTX]

Wow what a journey you've had! I know I'm one of the lucky ones in that my first ablation lasted 8 years and the second another 4. I was in persistent AF for about 2 years but the Amiodarone seems to have sorted it at least in the short term, I wouldn't want to be on it much longer but so far so good. I have an appointment with my EP on 10/6 so lots to think about in the meantime. He has already listed me for another ablation when I saw him last October so if that's the way forward then it will hopefully be in the Autumn. So hopefully fingers crossed I'll get there before Xmas. It seems like you are in good hands and I wish you all the best for the future x

[DawnTX in reply to GordonS]

I wish you all the best as well. Yes 8 years is fabulous.

sounds like you are also in good hands because there are many doctors that will do ablation after ablation was willing to do was with the pacemaker because the previous doctor and Houston made such a mess. I am so scarred you sound like you know what you’re doing I am in great hands, sometimes you are just in the right place at the right time that’s what happened to me. Someone upstairs was watching for me. Take care. I hope you get off soon.

[DawnTX in reply to DawnTX]

ps I have been on Metropol sucrate for quite a while and that one works for me sometime you get lucky