Following surgery last yar I developed atrial fibrillation. I was put on 200mg of Amiodarone and the side effects have been terrible . The worst being unsteadiness on feet cannot go anywhere without feeling that I am going to fall over. My consultant is going to change meds and put me on 40mg of Sotalol morning and same dose in the evening from next week Been off the amiodarone for 2 weeks but still suffering the effects.
Need to be mobile as husband also not well
I understand ablation would be the answer but Musgrove Hospital, Taunton don't do this procedure at present.
Any advice/thoughts would be much appreciated.
Sue
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Leicestershire
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How long were you on Amiodarone for? It does take a long time to get out of the body, many months. I was on it for 5 years and my AF didn't return until 6 months later, then my rhythm was still changing steadily over the next 9 months. However, be glad you're off it!
Ablation is now an accepted first line of approach if medications don't work. I would imagine Bristol do them, they have good cardiac surgery services, so probably an EP too.
In England there is the "Choose and Book" system, and the right to go where you want to. Have a look at nhs.uk/using-the-nhs/about-... *
Best of luck
(*Mods: I assume this link is ok as it's an NHS site, thanks)
I was on Amiodarone for only two months. I know that Exeter which is nearer to me does ablation but there is a long waiting list for this procedure. I will have a look at choose and book. Many thanks for your reply.
It takes a while for Amiodarone to build up to therapeutic levels so I was told & it would take a while to be completely out of my system. I have been on Sotalol previously and the on and off boarding times, at least for me, were a matter of days.
Everybody reacts differently to all the different meds due to age, metabolism, diet etc etc Main thing is don't get stressed, Dox aren't out to get you, it just takes time to zero in on what works best.
Hi, I've been on Amiodarone for 1 month ahead of a planned cardioversion mid Feb. However after just 9 days it got me back into rhythm (after 6 months of 24/7 AFib). So I assume the cardioversion will not be needed. I'm in Wiltshire and I know should I go down the ablation route it will be Bristol.I have become very anxious and unsteady over last couple of months but can't really blame Amiodarone , I have weaned off bisoprolol in December and I think anxiety plays a big part in the unsteadiness.
All that said I'm having blood tests next week and if there's any suggestion that Amiodarone is affecting say the thyroid I too will be asking for an alternative even if it's rhythm control might not be as good as with Amiodarone. It does have a very long half life so will take many weeks if not months to come out of the system so not surprised no improvement after 2 weeks, at least you aren't putting any more of it into your body. Be interested to see how you get on with sotalol. Best wishes.
I was on Amiodarone for two days until I got back into rhythm. That was enough to have a big impact on my thyroid. I suppose because of the high iodine. The doctors warned me about it, I felt suddenly very anxious and my thyroid levels were all over the place. It took almost 6 month to come right again. I'll never take it again if I can help it. My cardiologist said to ask for a cardioversion instead. Hppe all goes well
Thank you for the response, I have blood tests on Monday so will be looking out for any signs of results going the wrong way. I want off Amiodorone anyway, it's done it's job , takes ages to come out of our systems and I too would opt for Cardioversion (or ablation) if and when my heart goes out of rhythm which I guess is more likely if I bin the Amiodarone..
so if you are in NSR (Normal Sinus Rhythm) you cannot be cardioverted.
I was on Amiodorone for about 9 months, three months before a cardioversion and 6 months after.
It did not get me back into rhythm by taking the poison only, but did keep me in rhythm posy ablation.
However, I could not even look at the sun, I would get bad sunburn in the house if I stood too close to a window, even in the winter months. I felt terrible when taking the stuff. It was then found to have damaged my thyroid so I was taken off it. It took months to feel normal again, but after stopping taking it I went back into AF.
Several cardioversions followed , keeping me in NSR anywhere between 3 days and 3 months.
Thankfully an ablation 8 years ago fixed me up and I've been in NSR since
My experiences are, in respect of Amiodrone quite dated (2010), and with Sotalol very current (2024). I was diagnosed with paroxysmal AF on 6 January 2010. Now I stress these dates for the benefit of all the NEWBIES …. my point being that in 2010 the first line of approach was to control HR ! Ablation was available but not as common as today … I opted for the medication for life route.
Once admitted to A & E a young lady Dr. explained the approach ……….. firstly she gave me intravenously Amiodrone. She smiled and said you’ll feel like you are going to die, but you won’t. She explained they were aiming to get my HR down, on admission my BP was 76/50 with HR of 156 bpm. In the first 6 hours my HR had only dropped to 122 bpm. Can’t remember the BP. It was decided then to keep me in Cardiac Ward for a further 5 days. So all the time the Amiodrone was getting to work I was in bed. Only when my BP and HR was in the normal range did they start other stuff. I have never ever had Amiodrone in any form since. I would never ever take Amiodrone again. Vile !
Now for a bit of context …. in 2007 (aged 62) my GP put me on Ramipril and Simvastatin. Following my experience in 2010, ageed 65, ( as above) my Cardiac guy back in the day added to Ramipril and Simvstatin …. Warfarin, Bisoprolol and Felodopine. I stayed on this party bag of drugs until mid 2023 when my GP decided to cut out Ramipril – due to it causing quite aggressive coughing – it’s a side effect of Ramipril.
Between mid 2023 and today all my medical tean have concentrated on Beta blockers. I cut out Bisoprolol and went onto Nebivolol the finally, in April 2024 onto Sotalol. My Sotalol dose is the same as yours …. 40mg in morning and 40 mg in evening.
I would add that some months after starting Bisoprolol ( to be taken in mornings ), I developed random, full flow nose bleeds. My GP said take Bisoprolol 5mg at night. Never a nose bleed problem after that. When I next moved to Nebivolol (5mg ) I took that at night, no problem and now Sotalol as discussed above. No problem. I find the Sotalol the best of all Beta Blockers – no doubt about that.
So today, aged 80 my morning drugs are 40mg Sotalol, Felodopine 2.5 mg and a non-cardiac related drug. My evening drugs are 40mg Sotalol, Warfarin, and Simvastatin 40mg. Sorted ! Personally, based on my own experience I would never go back to Amiodrone, ever ………… The feature with both Sotalol and Amiodrone is that both can be used for treating irregular heart rates. Hopefully, Sotalol will be your personal wonder drug. Now that my drug taking is sorted I’m fine and none of the drugs interfere with my lifestyle … I need to get more physical exercise to go hand in hand with the Sotalol – is all !!
At the moment my BP is pretty steady at 132/80 with an average HR of around 74 ……….. lubbly jubbly !
Does your heart rate misbehave very much, what is the range of your HR or average ? Anyway, I wish you well and lots of times of great joy with Sotalol.
Sotalol suits me too apart from the sleep disturbances! I am on 40mg x 2 per day but staying on this post ablation as my EO wants it that way and I have to trust him
All these stories reinforce how lucky I have been in my experience with amiodarone. I was on long term (2010 to 2024) amiodarone and had minimal side effects. Some sun sensitivity that was alleviated by hats and sunscreen and an alteration in iodine metabolism that required an increase in my thyroid meds. It's a great drug if you can tolerate it. But as I see here, many people cannot. I was taken off of amiodarone in May 2024, and I had a "full monty" ablation in July 2024, I have been feeling really good since then. If one were a candidate for ablation, I heartily (pun intended) urge you to have it done. I must say that I may have been fortunate in the crew that did my recent ablation as they were outstanding. I go in for my post ablation check up in late Feb 2025.
Come to Exeter RD&E if you choose the ablation route. They are a brilliant team and not too far from Taunton by motorway or train. They use the Nuffield facilities where you can also book a private consultation with one of the EPs who have years of experience giving ablations. I found this route worked very well, you don’t jump any queues for ablation but you get on the waiting list with all your questions answered.
Morning , have never had amiodarone but have been on Sotalol for over 4 years and no major issues.......started on 40mg twice a day , now on 80mg for past 12 months on the whole it seems to have helped. Did start on bisoprophol but they made me feel like a zombi ,switched after 4 months. AF first diagnosed 2020.
See your Leicestershire based , do you use Glenfield cardio unit, if yes . how do you get on there ?
Glenfield Hospital in Leicester is one of the best heart hospitals in the Country (not just my opinion). They have some top consultants recognised locally and internationally. I can highly recommend them. Had my ablation there is March 2024 and was treated very well with no problems. No episodes since 🤞
I'm very knowledgeable about what I'm going to say-If amiodarone and sotolal didn't get you to normal sinus rhythm- they aren't working for you- get rid of them.
If you have permanent atrial fibrillation- ablation most probably won't work for you and most probably the electro surgeon won't allow you to take a ablation procedure.
You are now left with 2 options that must be followed- take any bloodthiners- rivaroxaban ,apixaban etc.
Take medications that reduce fast heart rates- there are a few good ones.
Take a test to find out your ejection fraction- anything between 50% to 65% is great- 65% being the best result.
Life will be tiresome for lots of activities but moderation is the key.
Thank you for your post very informative. I had cardioversion whilst in hospital when this first happened I am on apixaban but have come off amiodarone. When I had ejection fraction test in January it was 51%.
My understanding of Amiodorone was that it was the drug of last resort for AF where other drugs have become uneffective.
Good luck with the Sotolol. I'm on it at a much higher dose where it does a reasonable job of keeping a lid on my 30 year PAF although breakthroughs still occur but less frequent. No side effects apart from cold extremities and a slower HR.
I was put on amiodarone immediately in hospital following a cardioversion which I was told was a success. I am hoping the sotalol is much kinder than the amiodarone.
There are many ways to cope with AF. Ablation being only one of them.
Rate control is a first viable option, and some supplements, like D-Ribose, L-Carnitine and Ubiquinol also succeed in keeping AF at bay. And of course there are other rhythm medication possibilities besides Amiodarone: Flecainide , Disopyramide…
And sometimes, using one of these as ‘pill in pocket’ (when you have an AF-episode) works as well!
I would consider ablation as a last resort, because it still is an invasive procedure, with a limited succes rate, quite severe possible risks and involving a massive dose of potentially harmful radiation.
First thing to do is establish if your AF is vagally mediated or adrenergic. That will show the right medication approach.
Please don't scare people off ablation, it has worked wonderfully well for a lot of us here, me included. I was terrified when I had mine done but have to say it was the best decision I made. My episodes used to last 36 hours and came every couple of months with a fast heart rate, that's no life for anyone and I couldn't travel etc as I was always waiting for the beast to rear his ugly head!! If you check the BHF website it will tell you that catheter ablation is a minimally invasive procedure and although carries risks any serious ones are very rare!
The success rates vary, my EP quoted 80 to 85% on the first ablation if paroxysmal and if a top up required 90% so I wouldn't say limited success. I do understand that AF has no cure but many of us have been clear of episodes since, long may it continue. I can now travel abroad again without fear 😊
On the other hand I have a friend who has been struggling to keep her's under control for several years fearing ablation, however she is now is a position where it's really affecting her quality of life and has ended up in hospital whilst abroad, she is now pursuing ablation.
Providing useful, objective information should never have a frightening effect, on the contrary. It is meant to allow people to make an informed decision, taking all pro’s and con’s into account.
I have experienced first hand that most cardiologists and EP’s tend to embellish their favorite procedures somewhat, so it is certainly interesting to provide some honest counterbalance.
Succes rates of first ablations rarely exceed 70% and ‘serious events’ occur in more than 2% of the procedures (picture: in PFA-procedures, the ‘safest’ technique) , which is considered high in medical terms.
Moreover the bias towards ablations keep many patients from exploring the other solutions, of which there are many! One of my best friends is a cardiologist so I have the opportunity and the luck to be able to check everything with an experienced professional. He would never advise ablation as a first solution.
This is the real-life result of ablation efficiency, quoted by Boston scientific, the company who produces the catheters for pulse field ablation (PFA).
I think I have seen your posts before quoting a cardiologist. I suggest you look at the BHF website to see it quotes minimally invasive. It appears a lot of information is subjective and or opinions. Depends where you get your information from. Realistically I would rather take the facts from an EP that a cardiologist who doesn't specialise in heart arrythmias. I was transferred to an EP from a cardiologist who quoted "I do not have the level of experience or information*
‘Minimally invasive’ is still a lot more invasive than medication.
Moreover, ablations involve damaging healthy heart and vein tissue, which are both irreparable.
Even experienced EP’s admit openly that they have no exact idea what they are doing! I quote John Mandrola, an EP who has performed hundreds of ablations: “We don’t know why pulmonary vein isolation works; and we don’t know why it fails. Patients ask how I know where to ablate? This question always makes me smile. Because the true answer is that we do not know. We ablate the same area (PV isolation) in every patient”.
An extra effect to ponder when considering an ablation of the pulmonary veins, is the narrowing of the latter. This can mount up to 12 % in thermal ablation (see attached picture, numbers quoted by the manufacturer of the catheters, Boston Scientific).
All this is very useful information for readers in this forum, coming from reliable sources and necessary to make an informed choice.
My point is that ablations are offered far too quickly to far too many people, who would qualify for other, less invasive approaches.
We all have only one heart. Damaging it on purpose, without knowing exactly what we’re doing is not always necessary!
I mean no malice but I honestly think none of us can actually quote statistics it really does depend on what study you look at. All we know for sure is that AF isn't curable - fact, we have to be led by our experienced EPs after all they know best. I don't think it right that you say EPs don't know what they are doing! I am sure my EP who is President of the British Cardiovascular Society would be very offended by this statement.
Technology has improved and whilst I am inclined to be agree they don't know why it works for some (not others) it can't be said that they don't know where to ablate! They use very sophisticated and clever mathematics to look at the required areas. I suppose a lot depends on the skill if the operator. It worked for me thank goodness and whilst I am under no illusion it could rear it's ugly head again, for now the lid is firmly on the 'Jack in the box'.
I also think that everyone needs to consider if and when they go for ablation, it is a fact the sooner the more chance of success, once it becomes persistent or permanent it's much harder to treat. Another consideration is that the drugs are also quite toxic, again some more than others but to be on them long term is maybe not a good idea also. I know mine comes with a black box warning.
I would say to anyone, do what's right for you but take the word of the experts and that, in my opinion, is your EP
Medications like amioderone and Flecainide etc can cause very serious heart issues especially if they are used long term and also a lot more health issues to boot. Even my younger brother who was on Sotolol 40mg twice daily had to have a pacemaker due to the drug causing long heart pauses and severe Bradycardia. All this happened within a 5year timespan between diagnosis and drug administration. These three medications are basically the only 3 antiarrythmics that suppress Afib so are generally the drugs of choice. It is ridiculous to state that ablation carries more risks than medication if you do your research as it is ridiculous to try to promote that ablation is purely done for profit as no decent country would allow that to happen. People die from medication as rarely do ablation patients, I had an ablation last August and been in sinus rhythm since although I do have a fair few PACs. These are kept to the minimum with 2.5mg of Bisoprolol so do not bother me at all. Ablations have a fairly good chance of stopping your Afib with very minor risks and I would have no hesitations in advising any a fibber to have one. I refused point blank to take any antiarrythmics as I feel the risk is way too high.
Every decent country allows hospitals, cathlabs and specialists to make a good profit. Otherwise they would not exist anymore.
Even stent placement, for instance to handle angina pectoris. is mostly done without proven better end results than medication. In that case, it is purely about profit.
I have experienced the medical world from very close by, as my advertising agency worked for pharmaceutical companies. I can assure you that ‘making a profit’ is very high on the priority list, also -and especially- in that world.
And all professionals in that world would agree that 2,1% of serious adverse events’ is by all means considered ‘high’, not ‘very minor’ as you wrongly suggest. Let’s stay serious. 😉
Hello Sue. I have Atrial Arrhythmias and when I was due to have an ablation I was taken off of Sotalol for 3 days before procedure - within 2 days I was admitted to hospital with a hear rate of 182bpm. I was kept in overnight and the Ablation was done the day after. Unfortunately, for me, it didn't work and overnight my heart rate shot up again to 179bpm for hours. I was then put down to CCU and had a 'loading dose' of Amiodarone to stablise my heart rate. This was administered over 24 hour period. I felt awful but was grateful that it put me back into NSR but still with Arrhythmias. 10 days later I was discharged and took 200mg per day for 3 months then had a follow up consultation with EP who then reduced it to 100mg per day. I have been on this dose since 2022 and I asked if I could ever come off of it and the advice was no as it is the only medication keeping my heart stable. I am now however, at the point of still having arrhythmias/high blood pressure [which I never had before [aged 67] and pacemaker was mentioned last year as long as I was not getting any chest pain. Last September I started having 'niggles' of chest pain which I just ignored but it got to the stage that I was in agony so called 999 for help. I would also like to add that I have had an 'underactive thyroid' since my 40's and take Levothyroxine daily. My own opinion is that I am happy to stay on the Amiodarone and my body has 'adjusted' to this medication and without it I really don't know how long my heart could cope without it. Take care and I hope that you receive the care you deserve.
Hello, I was told that they wouldn't offer another ablation and I have also had 2 Cardioversions and also been told that I cannot have any more. Only alternative for me is Pacemaker. The chest pain is new and is very painful. Had an Angiogram week past Friday and it was clear, but they offered 2 other reasons for the chest pain - one was Artery spasm and the other was actual blood flow problem within the heart so awaiting to see what they decide next. I was put onto a Statin as I am type 2 diabetic, Isosorbide Nitrate [half a tablet a day] also have the GTN spray and Amlodipine 5mg daily. So far I still get 'episodes' but the chest pain is more of a dull heaviness now so hoping it'll lessen the chest pain over time until they decide what to do with me. I hope you are well.
Don't worry about being off amiodarone for two weeks and 'still feeling the effects'. This is a VERY long term drug with a half life of something like 60 days or so if I recall correctly and I remember it took me months to recover from its effects and transition to sotalol.
I would also query the time you must allow for the amiodarone to pass from your system before taking sotalol as they both have similar impacts on the pulse rate and so on, though it seems you will be on a low level of sotalol initially. My cardiologist suggested I should stop taking amiodarone one day and start sotalol the next, clearly a very bad idea when the impact of the first drug remains in the system for weeks and only relatively slowly declines.
I am fortunate that while I only took amiodarone for around six months or so, getting back on to sotalol was fairly easy in the end and I have functioned far better with that in controlling my permanent AF than with amiodarone. Amiodarone may be a highly effective drug which can transform the situation for many people but you must weigh up the awful side effects for many people and the long term impacts on the whole metabolism which needs constant monitoring.
Many thanks for your reply. I am hopefully seeing the cardiologist next week and will query still having the effects of coming off amiodarone and going almost straight on to sotalol.
When my French cardiologist just told me to take the Sotalol immediately after stopping Amiodarone, I was so anxious that I paid more than £100 to consult a UK cardiologist on line for a consultation for a second opinion. He did advise caution and suggested I took a very low dose of sotalol initially and gradually increase it if I felt no bad effects like very low BP or slow pulse. (I now take 80 mg a day in two 40 mg doses) and see how it went. But it did take me many months to return to something like normality.
(I should say I was also recovering from an ischaemic stroke at the time so it is quite possible it was not all the impact of Amiodarone).
Good luck and I certainly hope that Sotalol works out for you as well as it has for me. I have no obvious side effects apart from the expected low bp etc which all beta blockers can produce.
hi Leicestershire, with your name I wonder if you came from that area as I’m under Glenfield hospital heart hospital there and they have been doing ablations for a very long time.
Hi there, I see your user name is Leicestershire, are you in Leicestershire? The reason I ask is that I am under Glenfield Hospital in Leicester which has the reputation for being one of the best heart hospitals in the Country. I am under Professor Ng there who did my ablation last March and I can highly recommend him, no episodes since that I am aware of 🤞I have been on Sotalol for the last 4.5 years at 40mg x 2 per day, I was in 40mg x 3 per day but had this reduced following the ablation. I have no issues with Sotalol (it didn't work well prior to ablation but everyone is different), I had breakthrough episodes. The only side effects that I think is the problem is disturbed sleep and bad dreams which I believe is a common problem.
It has iodine in it which can affect the thyroid, so Id get your dr to do some blood tests. The link also says it can affect thecliver so he should do LFT testing. Glad you have come off it.
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