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How should I feel when I start taking amiodorane

Norfolk_spaniel profile image
30 Replies

I started taking amiodorane on Friday evening.3 tablets a day for first week,2 a day for second week then just one a day. It is making me feel awful,particularly in the mornings. I can't do anything but sit in bed or in a recliner watching TV. I am so tired, dizzy, light headed and slightly nauseous. Is this normal and will it pass? I'm ok with some pain for the eventual gain. Hopefully a cardioversion at the end of week 4.

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Norfolk_spaniel profile image
Norfolk_spaniel
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30 Replies

I’ve never taken Amiodarone therefore I’m not in a position to offer any advice based on personal experiences but like many here, I’m conscious that it has a reputation for having unpleasant side effects which causes folk to be very apprehensive. I believe the majority of these side effects occur during long term use so hopefully you might be lucky once your body has had a chance to adapt.

Difficult as it might be, try to focus on the benefits it will bring by helping to support the effectiveness of the cardioversion and at least you already know that the dose will reduce over time…..good luck with the CV.

mjames1 profile image
mjames1

Some people tolerate Amiordarone very well and some not well at all.

If you're taking it prior to cardioversion, then I assume they will keep you on it post cardioversion as well, to try and lock in sinus rhythm, if not then I'm not sure I see the point of taking it now.

So, if that's the case, and if you continue to feel this way, you will at some point have to decide if being on amiodarone is worth it or not. If not, then it might be time to explore ablation if you haven't already.

Jim

Norfolk_spaniel profile image
Norfolk_spaniel in reply to mjames1

I don't tolerate any medication well but this is the treatment that the cardiologist wanted to follow as my last cardioversion only lasted 4 weeks. I've tried beta blockers, verapamil and fleccainide and can't tolerate any of them. Ablation is my ideal solution but it hasn't been offered. I seem to have a choice of feeling rough with af and flutter or feeling rough with amiodorane. I can't afford the minimum £12k to have it done privately.

mjames1 profile image
mjames1 in reply to Norfolk_spaniel

Given your history, I'm puzzled that ablation hasn't been offered. Maybe someone more familiar with the UK system can chime in (I'm from the US) but I would think you might just have to seek other doctors who will offer you one. It's the old squeaky wheel thing...

Jim

Norfolk_spaniel profile image
Norfolk_spaniel in reply to mjames1

Thanks for the reply, but you don't get to choose your hospital consultant in the UK on the NHS. The closest private heart clinic is 60 miles away and I just don't have the money to pay for a private ablation. I suspect that the next treatment offered will be ablation but I may have to wait over a year for it.

Singwell profile image
Singwell in reply to Norfolk_spaniel

We have a Visiting EP here at Hereford (my nearest). Comes up from Birmingham. If you're in England you can request referral anywhere in England. Talk with your GP about it.

Batigol profile image
Batigol in reply to Norfolk_spaniel

Even in the UK you can ask for a second opinion, even to change you Dr, EP, or whoever. Does sound as if an ablation may help? If possible get a private consultation to discuss your situation and plan going forward. They can then refer you back into the NHS.At beginning of covid a private consultation cost about £240. Best £240 my wife ever spent as it moved her on from drugs that turned her into a zombie with constant AF to having an NHS DCCV that got her back to normal, with bonus of a plan for ablation.

Good luck.

Incidentally low, to very low dose (200 - 100mg) of amioadrone has very few , if any, dire side effects. Search the forum for link to study on it.

mjames1 profile image
mjames1

Understood. But given your intolerance to the drugs, I would think you have a very good case for an ablation. Hope you are offered it soon.

Jim

Ppiman profile image
Ppiman

I should think your heart and body will slowly adjust to the new environment it finds itself in. I never was given this drug in the end, but it was on the cards as I can't take any of the usual ones.

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

Steve

Visigoth profile image
Visigoth

I’ve been on amiodarone now for 15 months and it’s fine but for the first two weeks I felt weird - lightheaded, dizzy, nauseous etc. We’re all different I know but in my case it was definitely worth the pain for the gain, if that reassures you a bit.

Norfolk_spaniel profile image
Norfolk_spaniel in reply to Visigoth

Thanks for your reply, really reassuring. I just need to get through the next 2 weeks.

Shemac52 profile image
Shemac52

Hi While on amiodorane make sure you have regular blood tests.

Rubymurray25 profile image
Rubymurray25

For me there was definitely a two week settling in period with taking a different strong drug in Amiodarone, but then all was OK and was on it for 7 months with no major issues. It was the only drug to stop a prolonged AF episode in hospital so I guess I was just pleased to be on it. ( I had to remind my doctor that the consultant told me to get a 3 month liver test , so doesn't appear an automatic thing )

Marvkey profile image
Marvkey

I have been on Amiodarone for 6 months now while awaiting an ablation. The first few weeks i felt nauseous during the day and in the middle of the night , and my diet is low . Sometimes I look at food and think 'no thanks' . That said my permanent AF is controlled to a tolerable level, and my body seems to have adjusted to the drug, with fewer bouts of nausea. I would persevere if you can and wait for the CV.

Norfolk_spaniel profile image
Norfolk_spaniel in reply to Marvkey

Thanks. My reaction to food is that I am having to force myself to eat a little. Hopefully, my body will start to adjust. I want to enjoy the summer.

Ewloe profile image
Ewloe

I read your post and replies with interest as I’m seeing an electrophysiologist next week and I’m thinking amiodarone will be on the table as I can’t have some other anti-arrhythmics due to muscle damage from heart attack. I’ve read that it’s the higher doses of amiodarone that can cause the problems ( which I’m presuming your on at first as a loading dose), and that the lower doses are much better tolerated. Please let me know how you get on as you lower the dose.

Enobarbus profile image
Enobarbus

I know someone who's been on Amiodorone for ten years without serious side effects. However, when I started on it about a year ago I found that after a week I literally couldn't get to sleep at night. The insomnia, which I don't normally suffer from, was intolerable. When I changed to Sotalol I was fine. It's not quite as effective for the AF, but good enough, and at least I could get a night's sleep!

oscarfox49 profile image
oscarfox49 in reply to Enobarbus

Same happened to me, though I only took Amiodarone for three or four months. But at one stage I couldn't sleep at all for two or three nights in succession and I had complete blackouts of my memory. It was terrifying. I thought I was going mad when I couldn't remember either the name of Donald Trump or Boris Johnson (though some might say that was a good thing!) 😜

Jes59 profile image
Jes59

I was put on Amiodarone which I tolerated very well for a year, with the dosage reducing over that time. I don’t remember it affecting me when I first started taking it, so I’m afraid I cannot relate to that, but i would suggest you talk to your doctor. As for the ablation, certainly in my case, this was a last resort and only came up after a year or two of being AF free (following Amiodarone). So before you start thinking of private treatment (sounds like you cannot afford it anyway, oh and I think it may cost a lot more than you think) talk to your doctor again as an ablation may be the next course of treatment for you. Good luck!

Nannysue1 profile image
Nannysue1

Hi there. I was on amioderone for 6yrs with no long term side effects. I seem to remember that initially, I didnt feel too great but that was because of the high dosage, which when it was reduced down, was ok. The amioderone worked well for me and kept me out of AF for most of the 6yrs years before it stopped working 2yrs ago. I had 3 monthly blood tests, yearly ECO and bi yearly chest xrays. Some people have had side effects from it so you do have to make sure that you're monitored well but for me it worked really well

Flossie72 profile image
Flossie72

I was on amiodarone for 11 months pre and post ablation. I experienced the same symptoms as you during the first 2-3 weeks, and after that was absolutely fine. My big problem was having to avoid sunlight as I am a sun worshipper. Even with sun block I would burn very very rapidly so do be careful.

Ducky2003 profile image
Ducky2003

I've never had that with Amiodarone and have been on and off it for a while (currently on it).They give you a loading dose to get it onto your system so maybe when you drop down to 1 tablet, you'll feel better.

It will provide a better chance of staying in NSR so if you can put up with it for a couple of weeks, if should be worth it.😊.

riffjack846 profile image
riffjack846

Sorry to hear. I'm one of the lucky ones I guess. Amiodarone is the only medication I've taken that put me in NSR and with no side effects. Good luck on the cardioversion.

TracyAdmin profile image
TracyAdminPartner

Amiodarone is used to help keep the heart in its normal (sinus) rhythm. It is also

used when the heart has changed its rhythm (arrhythmia) to help it return to

normal rhythm. Amiodarone has a low risk of pro-arrhythmia (a new or more

frequent occurrence of pre-existing arrhythmias) and is commonly used in

patients with structural heart disease. You may wish to download our patient information sheet for further advice \ side effects etc:

fact sheet
kocoach profile image
kocoach

Hello Norfolk, 've been on amiodarone for about 4 years nowone ablet a day and the things you are mentioning I also have them, very tire most of the time, lethargic like you watch tv and nod off most of the day and then when time to go to bed have trouble sleeping because of all the naps I take during the day. My nauseous I attribute to my Gastritis but is the amidarone causing it, who knows. So in answer to your question YES

oscarfox49 profile image
oscarfox49

Just be aware that once you are taking Amiodarone which has an incredibly long half life (several months at least) you cannot just stop it and it's gone. It stays in your system doing its stuff for months, which is one of its advantages of course.

What I found was that numerous other drugs were contraindicated with Amiodarone; in fact, almost everything I checked was not to be used with it; but my GPs simply wrote me prescriptions for various other problems and didn't even know there could be a problem. It was only once I started doing on line checking that I discovered some of the reasons why I was having awful reactions. You might think pharmacists might have picked this up, but when I pointed the conflicts out they said, 'Just ask your doctor!'

It really did not agree with me and I felt absolutely terrible for the three or four months I was taking it, and for the three or four months after I came off it. But if it seems to suit you and help you, just make sure that you are not being prescribed other things which are dangerous to take at the same time, which can include simple things for allergies, sore throats and various antidepressants and anxiety drugs.

Elfiejean profile image
Elfiejean

When I was on 200mg daily I had side effects that you describe. When they decreased it to 100mg daily it was easier to tolerate. You will need to be monitored on a regular basis. I am giving it a try because ablation sounds awful to me. Scares me to death. Side effects are hard to deal with but you'll get used to it. Mine finally leveled out and is tolerable.I wish you the best. It's never easy.

Norfolk_spaniel profile image
Norfolk_spaniel in reply to Elfiejean

Thanks. I am feeling worse by the day, just 2 more days of 3 tablets a day and then down to 2 a day. Now confined to bed as I am too dizzy to stand up, feeling sick, no appetite and keep getting anxiety attacks. My blood pressure is perfect but worried because my heart rate is only around 50. It was previously around 70. GP will ring tomorrow. I've never felt so rough and I'm 69.

Prince123456 profile image
Prince123456

Hi. Why Amiodarone? I would ask for Flecainide first and if that doesn’t work then Amiodarone

Norfolk_spaniel profile image
Norfolk_spaniel in reply to Prince123456

Thanks for the reply. I have tried flecainide and couldn't tolerate it, I felt so bad with it that I ended up in hospital where amiodorane was prescribed. Looks like I'm also struggling to tolerate amiodorane. My heart rate was down to 51 an hour ago. Prior to amiodorane, it was around 70. Rang the arrhythmia nurses this morning and still waiting for someone to ring me back. Tomorrow is the last day for 3 tablets a day.

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