Amiodarona- I’ve been on it a week and feel very shaky, almost like tremors inside. Just wondering if I should continue with it ?

[Nodoubt2]

I am on holiday in Spain had a bad AFib attack with RVR ended up in intensive care. Long story short they put me on Amiodarona and I’m feeling very fatigued still (8 days after discharge) and very shaky. Thinking about coming off the drug since I really don’t feel good on it - thought at first it was the aftermath of AFib but 8 days later still feel awful . I have a Kardia monitor with me and I have had no further AFIb. Is it the RVR that means it’s more dangerous and that’s why they’ve put me on this horrid drug? Any help from anyone who’s been on it appreciated . Thankyou

[BobD Volunteer]

Are you back in England now? Amiodarone would not normally be prescribed in UK in such circumstances as it is considered a drug of last resort. Speak to your doctor before doing anything.

[Nodoubt2 in reply to BobD]

no I’m still in Spain. Think they felt an hours quick flight to mainland was the best thing for me at the time - so I’m resting up on the mainland back on our boat. Yes I have emailed my UK consultant but not sure he will comment further without seeing me. Have booked in with him for august 2nd jist not feeling comfortable taking these tablets at all

[DawnTX in reply to BobD]

Bob that’s exactly why I would never tell anyone about meds. You just stated it’s a pill of last resort. Here it seems to be the first one such as when I had my very first ablation.

I am glad they hold off for all of you. I think we should follow the example of the UK on many of the meds.

[BobD Volunteer in reply to DawnTX]

As far back as 2009 European Society of Cardiology stated it was a drug of last resort.

[Nodoubt2 in reply to DawnTX]

hi dawn did you get any symptoms when you were using it? And how long were you on it for ? Thanks

[jeanjeannie50]

I can see why they have put you on Amiodarone because of your RVR, but as Bob has said it's not a nice drug and only used in exceptional circumstances. I would get yourself home ASAP and see your GP, to see if there is a less toxic drug he can prescribe. I'm afraid I know little about the ventricles, other than it's a more concerning condition than AF.

Let us know how you get on please.

Jean

[Nodoubt2 in reply to jeanjeannie50]

hi Jean

Yep thought AFib was bad enough - haven’t enjoyed reading about the RVR on top. My uk consultant knows about it all and is fine with me staying another 2 weeks …just hope he’s read my discharge papers carefully - I trust his opinion . Just heard back from him and he does want me to stay on the Amiodarona until I see him again early august 😢 I’m seeing a local cardiologist on Monday here in Alicante too and will mention the side effects to him/ her also. I’m taking it very steady and chilling out - thanks for your comments

[jeanjeannie50 in reply to Nodoubt2]

That's good to hear. Stay well.

[DawnTX in reply to jeanjeannie50]

Ahhh ha I obviously missed the part about the ventricles. I never had them mentioned except once in Florida 2 1/2 years later when I got my pacemaker etc. and everything else it turns out my ventricles have been the problem as well as a typical flutter and a few other things. That’s why a doctor needs to advise her about stopping or not, and how to do it. I hope you are well Jean.

[Nodoubt2 in reply to DawnTX]

thanks dawn - I’m waiting now till tomorrow when I see the local cardiologist x

[Ppiman]

RVR is a rapid pulse ("tachycardia") and that is a common response of the heart (well, its lower chambers, the ventricles), along with irregularity, to arrhythmia in the top chambers (i.e. the atria). Usually, a beta blocker such as bisoprolol is given to reduce the rate and, as a “side effect” this can often stop atrial arrhythmias, too, as these often somehow go hand in hand with even the briefest run of tachycardia (such as a short run of ectopic beats).

Amiodarone is different and is a direct way to stop the arrhythmia itself. It’s a highly effective heart drug and, as Bob says, one that is usually reserved after others have failed because it mess to have side effects, and occasionally serious ones. In low doses, 200mg for example, though, it is reported as safe, but some are said to be unable to tolerate it.

I'd say from my own experience that feeling shaky and with general heart region discomfort (under left rib and similar) is common with heart arrhythmias and I can feel that without any AF happening. If I check, though, there's often ectopic beats occurring such as PVCs and PACs, and these create a general sense of palpitations (a sense of more forceful beats).

Steve

[Nodoubt2 in reply to Ppiman]

thanks Steve helpful clarification. I’m feeling less shaky today so hoping that now continues p

[DawnTX in reply to Nodoubt2]

I am glad you checked. Yes please do a stroll so you don’t throw yourself off. If my cardioversion had worked I was going to be kept, and I see you for five doses of Tikosyn that is how bad the side effects and reactions can be to this one 24 hour monitoring, as well as lots of warning about what it can do. Yeah that was very scary to me but again when you are so sick it gets to the point you’ll try anything they suggest. I got my pacemaker, although I was dead set against it originally. When my doctor explained everything before I even asked him questions, and he already gave the answers I knew I had to do it. PS the smartest thing I have ever done in my life I believe because I have quality of life. I never thought I would see you again. Nothing is perfect. Everyone needs to know that. And unfortunately, they say pain has no memory and it seems to be true because if you remember how badly you felt you would run to get your pacemaker. At the beginning of February I had to use a wheelchair to go into the hospital. I was able to walk out. And except for a couple of setbacks, nothing major, I can’t believe how good I feel. 😊

[Nodoubt2 in reply to DawnTX]

hi dawn I don’t feel like I was so sick - I felt ill but when my heart reverted I felt loads better ( just exhausted) . I don’t fully understand why they’ve put me on Amiodarone I’m guessing it’s something to do with my ventricles joining the party x

[Nodoubt2 in reply to Ppiman]

hi there

Mm maybe what I’ve read isn’t correct then but this is just one of the excerpts I’ve found about AFib with RVR. More than just a few palpitations I think? Or is this article incorrect ? Thanks

Atrial Fibrillation with RVR Dangerous?

Yes it is! Atrial Fibrillation with RVR is something one should worry about and for the right reasons.

When ventricles in a person’s heart beat faster than they should be, the overall efficiency of the heart reduces by many folds. The reason is simple – the ventricles in a heart that has Afib with RVR is unable to properly fill themselves up with blood. This brings down the overall efficiency of the circulatory system as a whole, thus increasing the chances of the person in question to suffer a heart attack.

[Ppiman in reply to Nodoubt2]

Sorry if I’ve confused. I was trying to say that atrial fibrillation is a problem at the top of the heart, whereas RVR is a problem of the bottom of the heart, but one that can be caused by the AF top problem, although not always. For example, my AF can be at normal rates and mostly is but sometimes it’s AF with RVR; on the other hand, my friend’s permanent AF is always at normal rates and never with RVR.

“Palpitations” is a general term that describes a feeling of pounding, skipping or other left-sided chest sensation. Usually this is caused by ectopic beats, which are safe; but it can be caused by AF, which isn’t safe as it can lead to blood clots and strokes.

I’ve never read that RVR or AF increases the chances of a heart attack; in fact, I don’t think it does unless the heart is otherwise diseased.

Steve

[Nodoubt2 in reply to Ppiman]

Hi Steve

Thanks for clarifying. Sadly I do have CHD ( coronary heart disease ) so maybe again that’s why it’s more dangerous? There seems to be so many combinations and varieties it’s so difficult to find your way clearly through it all x

[Ppiman in reply to Nodoubt2]

I bet lots of people are walking round without knowing they have CHD. My sister in law found out the hard way at Christmas having ignored signs for years and… a heavy smoker (now vaping!). She was given a stent and is now much better.

Steve

[Nodoubt2 in reply to Ppiman]

hi Steve

Yep the consultant said that to me - he said I’m one of the lucky ones. Tubes blocked 50-60% on one so he wanted to leave it as it is rather than stent - since I’ve had no angina and overall seem very fit. He said loads of people were walking around with far worse without knowing p

[Ppiman in reply to Nodoubt2]

It sounds like you have a good doctor. This study on amiodarone safety took my eye when I was nearly put on it:

ncbi.nlm.nih.gov/pmc/articl...

Steve

[Nodoubt2 in reply to Ppiman]

interesting article thankyou for sharing

[Lilypocket]

Hi

I was on Amiodarone for a couple of months. As said above , a lowish dose for a short period of time usually causes no problems. I think if you have informed your medical team, your Dr is OK about it , your side effects are subsiding and you have no arrythmia the only thing left to do is enjoy your holiday! 😎.

[Nodoubt2 in reply to Lilypocket]

ah that made me smile 😊 yes need to focus on enjoying the rest of our holiday now. Just difficult with it all hanging over me. Worried I’ll have another bad AFIB attack and will end up back in hospital. The first time I had an attack I had another 4 days later … anyhow it’s now 12 days since the attack so cross fingers it will stay that way for a while now x

[Lilypocket in reply to Nodoubt2]

Amiodarone is an amazing med . It quite rightly has had a bad press but has helped many people including myself. After my ablation my heart went bonkers - worse than before. Two cardiologists told me it had failed. The EP stayed cautiously optimistic . One cardiologist put me on Amiodarone temporarily as she said my heart desperately needed a rest to recover My EF was 29/30. As if by magic I went back into normal rhythm. After 2 months I was taken off it and we all held our breaths. My heart had had the time to heal and I stayed in NSR. I am now off all meds and have had no further episodes of Afib apart from 5 or 6 seconds . So I hope the Amiodarone keeps working for you until you get home and get a plan together with your cardio team about what happens next 🙂

X

[Nodoubt2 in reply to Lilypocket]

oh Lily that sounds so positive - really glad it has worked for you and yes if it can get me home and buy me some time before I see my cardio team then it’s done the job can

[Lilypocket in reply to Nodoubt2]

Amiodarone doesn't work for some people and makes no difference to their arrythmia or makes them feel ill but if after 12 days you are still in NSR then it seems to be working for you 🤞The thing is not to stay on it too long if possible. But again some people are on it for years with regular medical checks and seemingly with no negative effects. We all react differently to meds I suppose.Let us know how you get on x

[Nodoubt2 in reply to Lilypocket]

will do thankyou x

[Quilter43]

Been on it for short time before procedures .to put heart in rhythm. Not a drug to be on for any length .affects lungs been told

[Nodoubt2 in reply to Quilter43]

yes def don’t want to be on it for the long term

[DawnTX]

Do not just discontinue, but none of us can tell you what else to do because amiodarone is a very serious drug to deal with. I was on it for almost 4 months following my first procedure a cryo- ablation. I felt like death. I was so sick in so many different ways. I have a tendency not to make a big deal of things, but when my doctor saw me, he realized how sick I was, and took me off it. Within days of weaning me off I felt so much better. The point is it’s supposed to KEEP YOU AND NSR

A terrible part was I was on it almost 4 months and it failed around the time I hit six months. This is why it’s so important to speak to the doctor. I’m not sure why so many people ask about medication used to all of us out here. We are all very different. Your doctor knows everything about you. We don’t, and we are not educated for it. As much as we learn about a fib, it can be different for everyone

Most meds take weeks to kick in anyway you are at the beginning of use. They put us on it first usually because it is supposed to be the best time even though it is horrid Amazing. Some people can take it and they say it’s great, but I will never be one of those people. The other one he put me on never gave me a problem, but as I said, my cryo-lasted only six months, two months after I went off the amiodarone I always wonder what it has kept me NSR? I think I felt so sick. I wouldn’t have cared either way. Good luck getting it straightened out.

[Nodoubt2 in reply to DawnTX]

thanks Dawn. Sorry to hear you had such a bad experience on the drug - it does worry me being on it and I feel surprised that as a drug of last resort - they’ve put me on it so quickly. Makes little sense to me. I’m seeing a cardiologist tomorrow now locally In Spain and plan to ask a lot more questions . They prescribed it for me literally as I was leaving hospital so had no idea about the drug until I sat down to google it x

[Nodoubt2]

UPDATE

So saw the cardiologist earlier. He seems pretty relaxed but has put a 24 hour ECG monitor on me just to make sure my heart is now fully back in rhythm. He wants me to reduce the Amiodarone but he’s happy that it does seem to be keeping me in rhythm. He has also told me to stop my beta blocker ( nebivolol) since he says it will make my asthma worse! Not sure what my UK consultant is going to say to that - hard to know what to do they obvs have different opinions. So going back tomorrow to have the monitor taken off and they will check the ECG trace while I am there ( I think). They also did another echocardiogram which was clear. We asked again about coming home but he says so long as the trace is good I can do what I want after that.

He’s suggesting I talk to my cardiologist about having a catheter abalation to stop the AFib so I could them come off the Amiodarone. I think what’s clear is that they don’t want me in AFib because of my CHD ( coronary heart disease) especially with RVR! So look forward ha ha to chatting all this through with my uk consultant

P