The dreaded Amiodarone : Morning... - Atrial Fibrillati...

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The dreaded Amiodarone

Gillybean123 profile image
26 Replies

Morning everyone, had ECG yesterday I am still in AF but pulse only 80. Everything else is good. I am seeing GP this afternoon re going on Amiodarone. Just reading about all the side effects the worst being problems with your lungs. I take 2 verapamil 120mg and 300mg flecanide through the day. I took one verapamil for three years plus my flecanide and I was more or less ok. Then I started having the feeling of my heart rate all through my body. I used to sit and listen to it.my GP said it was palpitations then I was rushed to hospital with my pulse at 143. The A&E doctor upped the verapamil again. Got to see my cardiologist and she said that I had been dosed too much for my weight. She said I was having anxiety and panic attacks. Two other doctors have said the same thing so I take Diazepam as and when needed. So I was put back down to two verapamil. I have not been right for about three months. I don’t think I want to go on the Amiodarone. Has anybody else seen that verapamil can give you irregular heartbeats? I am wondering to ask to go back to the one again. Has anyone any suggestions. My energy levels are low. Thanks

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26 Replies
10gingercats profile image
10gingercats

I would ask for a detailed explanation as to why you need Amioderone .How will it improve your situation? How long are you expecting to have to take it?Are you taking verapamil AND Amioderone? Sounds a lot to me.....i am not a medic .

Gillybean123 profile image
Gillybean123 in reply to10gingercats

hi there, no not both they are thinking about changing my medication to it. It is the lung bit I don’t like.

Gillybean123 profile image
Gillybean123

well that’s good news. One positive reaction. I have got that one on my list of questions. Thank you

Gillybean123 profile image
Gillybean123 in reply toGillybean123

Also I do want my life back you feel you are wasting it when you feel so tired all the while.

listerines profile image
listerines

My suggestion would be to discuss what the longer term plan for your afib is with your cardiologist/ EP. From my understanding through discussions with with my EP and other support group members is that amiodarone is a potent medication that has a high degree of success in stabilizing afib arrhythmia, but it can have challenging side effects (and at times a multitude of systematic effects). In many cases is a medication of last resort and is used for short periods to stabilize the heart prior to and after other treatments such as ablation. Worth discussing with your care team.

Gillybean123 profile image
Gillybean123 in reply tolisterines

hi there have decided I’m not going on it. Going to ask about other alternatives.Thank you

riffjack846 profile image
riffjack846

Amiodarone is the only drug that ever kept me in NSR. 2nd ablation scheduled Dec.

Nannysue1 profile image
Nannysue1

Yes I know that it's a drug to be extremely cautious of, I was on it for 6yrs and it kept me in sinus. I had 3monthly blood tests, yearly echo tests and bi yearly chest xrays. It worked well for me with the only down effect being that I was very light sensitive during that time and had to be very careful in the sun.Unfortunately it stopped working and so obviously I came off of it. Other people have had trouble with it , so all that I can say is that it worked well for me but you do need to be closely monitored.

Visigoth profile image
Visigoth in reply toNannysue1

it worries me that amiodarone stopped working for you after six years. I’ve been on it for 18 months and have been hoping that it will go on working indefinitely! Or even that my heart will remodel itself out of a fib because it is controlled so effectively. Were you in paroxysmal a fib before you were out on amiodarone?

Nannysue1 profile image
Nannysue1 in reply toVisigoth

I had a couple of break throughs and had cardioversion which didnt last long. Tried other medications but without much success.

I've just had a pacemaker fitted and am waiting for an ablation next week.

Rubymurray25 profile image
Rubymurray25

After two ablations Amiodarone was the only drug that would keep me in NSR . I was on it for 7 months and the only issue I had was crystal droplets in my eyes so it was stopped without an alternative but I was rushed through for a 3rd ablation 10 days later. I was all prepared for the procedure, canula etc when the consultant came and said he had seen the ECG and felt my heart had worked well with the amiodarone over the past 7 months and decided the 3rd ablation shouldn't go ahead....I thought i was dreaming! He asked if I wanted to try drug free( my ultimate goal ) but having been AF free for 7 months I realised how wonderful that period had actually been so I asked if there was an alternative and he put me on dronedarone and that has worked well. I have had one hiccup and have an Echocardiogram next week. I liked my consultant and trusted his judgement, I now have a new one so fingers crossed but he seems really on the case.

Gillybean123 profile image
Gillybean123 in reply toRubymurray25

I am really pleased for you. I am waiting for cardiologist referral to come through and am having loads of blood tests done. X

Visigoth profile image
Visigoth in reply toRubymurray25

it’s interesting that you were taken off amiodarone because of the eye droplets. I have those but my eye consultant says they are of no consequence. I hope he’s right as there’s been no suggestion of me coming off the drug!

Rubymurray25 profile image
Rubymurray25 in reply toVisigoth

In fairness the droplets were discovered at the same time as high eye pressure ( 31,normal is 16-18 ) during a routine eye test and the optician assumed it was the meds, but I was then told I had glaucoma , so as my consultant said it was a little inconclusive but stopped them anyway!

oscarfox49 profile image
oscarfox49

I would ask about the suitability of diazepam... ok now and again but dreadfully addictive even after a few weeks of continuous use.... and not good for heart... like alcohol. For some Amiodarone is a perfect solution.... but wasn't for me, and with a half life of 90 days it goes on doing its thing even when you stop taking it, Enquire about alternatives; amiodarone is an extreme solution. many of us do ok on the various beta blockers.

Gillybean123 profile image
Gillybean123 in reply tooscarfox49

I am one of those people that make sure I don’t get addicted to anything. My doctor said you are a very sensible lady yesterday. I research everything I take my daughter said I research too much but sometimes the doctors do miss something and it is up to ourselves what we put in our bodies.

oscarfox49 profile image
oscarfox49 in reply toGillybean123

Glad to hear it, I was one of millions put on valium in the 1960s when they handed them out like sweeties and said they were entirely safe and non addictive, I ended up hooked on larger and larger doses and the medical establishment in total denial for decades and blaming everything on the patients, It took me years to get off them by my own efforts, wrecking some of my career in the process and first marriage. This is why I react every time I hear benzodiazepines mentioned!! :)

Gillybean123 profile image
Gillybean123 in reply tooscarfox49

I was put on them when I was 26 because I wanted to learn to drive I was useless. Still can’t drive. I can remember sitting in the doctors office and she just said I’ll put you on Valium. In those days I had a really good job. I didn’t move off the settee for two weeks. Lost nearly a stone I felt dreadful. And I vowed never to go on it again. I have taken it this year for muscle spasm in my neck which I must admit they did work. I didn’t realise that diazepam was Valium. But as soon as the pain went that was it I came off them. I may take a couple if I am not coping with all the things that are going on in my life but that’s it. I am 72 now.

Ppiman profile image
Ppiman

It might help you to read a fairly recent study on the safety of amiodarone:

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

If you do to take it, your doctor should carry out regular reviews to be sure you remain well.

You have my sympathies regarding the anxiety this is causing and being prescribed amiodarone certainly won’t help that. Fear is a really unpleasant aspect of having any heart issues as I know well myself,

Steve

Gillybean123 profile image
Gillybean123 in reply toPpiman

thank you Steve. Just been reading it. Going to chase cardiologist today.

Leeson profile image
Leeson

HiBeen on Ameoderone for years has controlled my AF, occasionally a few jumps but nothing how it was, always in ER with heart racing around 200 beats a minute, and hooked up to drugs to control it, no problems with my lungs only negative is that I burn easy in the sun so have to be aware of that, tried other drugs that just didn't work, so Ameoderone has been a life saver for me.

Jajarunner profile image
Jajarunner

Verapamil reduced my HR from about 120 in afib to about 35 in a few minutes at which point I collapsed and was rushed to hospital in an ambulance. Very scary.By contrast I've had no issues with amiodarone. The afib nurse told me "it is an excellent drug with side effects for some" and many of those side effects were with olden day high doses not today's lower ones. I actually asked to go back on it when my third ablation didn't work but am now on dronedarone instead.

I hope you get sorted out and feel better soon xx

Gillybean123 profile image
Gillybean123 in reply toJajarunner

hi there, talking to Dr. Yesterday and she said I will have to see my cardiologist but she said it is a dirty drug. And asked about the other one. But she is chasing the cardiologist referral that I am waiting for. Meanwhile I am having every blood test going done. How much verapamil were you on, also how much dronedarone are you on and if you don’t mind me asking how old are you? Thanks

Jajarunner profile image
Jajarunner in reply toGillybean123

Amio 100, verapamil not sure as I only took it once! I'm 59. No, I'm not I'm 58!!!!

Gillybean123 profile image
Gillybean123 in reply toJajarunner

thank you. I am 72 and sometimes 71 xx

Gillybean123 profile image
Gillybean123

Hi there, I was on bisoprolol for quite a long time they put me up,to 10mg at one time. When I was walking my dogs I always felt that I couldn’t get enough air into my lungs and had to stop and pretend I was enjoying the views of the Malvern hills. Funny then someone said on here ask to go on Verapamil and I was fine for three years then all this new stuff started. But I think I am getting there slowly. It is the tiredness with me as well., I am not a sit down person normally but these days it’s all,I want to do. Thanks John

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