AF and amiodaran treatment, ablations, cardioversions

[Mightnot]

This is an update to my original post in this thread and I thought I would start a new thread. I'm 55 years old and I've had atrial fibrillation for a year. I've undergone two cardioversions, and the last one lasted for about 10 weeks. For the past 10 weeks, I've been in atrial fibrillation all the time. I'm still waiting to see the doctors at the hospital, so I saw a consultant. These are my options:

1. Just live with it and take /increase bisoprolol up to 15mg from 10mg

2. Keep taking my flecainide and get another cardioversion, although that might be a waste of time according to the consultant.

3. Stop taking flecainide and switch to amiodarone, then get another cardioversion. Hopefully, the amiodarone can keep me in regular rhythm and then I can have ablations. The first cardioversion is like a trial run, and the second one is to fix the problem. This might keep me in regular rhythm for a few years.

4 an option I thought of was just having the ablation straightaway, but each one of the doctors I’ve seen have said I must be out of a regular rhythm for six months before they consider the ablation. However people on here have said that they’ve had the ablation without being in regular rhythm. So this option for my own option which I will ask when I see them NHS, but I’m pretty sure they’re going to strongly suggest route, three

The doctor mentioned that on a amiodaran dose of about six months to a year, not long-term use, amiodarone should be fine and is a very effective drug. However, I'm really afraid of the toxicity of amiodarone. I've read about it online, and some posts mention its toxic effects on the thyroid and other issues, including the rare "blue man" syndrome, which sounds horrific.

Does anyone have experience with this drug or been through a similar situation before? If so, I would appreciate some feedback. At the moment, I'm considering taking amiodarone, but when you read the side effects of most drugs, they sound concerning. This one, in particular, seems quite severe. I've read scientific literature indicating a 50% chance of experiencing one of the serious side effects, whereas with many other medicines, the chances are much lower, like one in 10,000. These potential side effects are nasty, and while I'm not dying, I wonder if I could just live with my current condition.

When I’m not in regular rhythm, and when I’m in atrial fibrillation, I have about 20% less energy and vigor, but it's not totally debilitating like some people experience. They can't get out of bed or off the sofa, whereas I can still walk a few miles. I just don't feel as well.

[pip_pip]

Option 3... Extra bisoprolol at that level won't help. You can go to 20mg IF in AF persistent. I was on a high dose 17.5mg and really I could barely stand up. They'll try anything... Also the cardioversion and then another to fix the issue ? Doubt it. With my early abalations i was on Amioderone, and very good it was too. I did not have any side effects and I was on for 2 years X 3 = 6 years. No more tho.

It's according to where you are regarding not doing the ablation immediately I think.

Option 3

Phil

[Mightnot in reply to pip_pip]

i am concerned about the toxicity of amiodaran as several people on this forum has said they have thyroid issues

[Mightnot in reply to pip_pip]

thanks for the reply - what dose did you take of amiodaran and for how long? Someone said that 100mg a day was the dos that affected them the most.

[pip_pip in reply to Mightnot]

The thing with amioderone there is only one recommended dose. I can't remember what it is. You can't increase it like flec or any others.

[mjames1]

but each one of the doctors I’ve seen have said I must be out of a regular rhythm for six months before they consider the ablation. However people on here have said that they’ve had the ablation without being in regular rhythm

Are you saying they won't offer you an ablation unless you've been IN afib for six months, or are you saying they won't offer you an ablation until you've been OUT OF afib for six months?

In either case, neither makes sense at least according to US protocols and giudelines, unless there's more to it.

For example, being in continuous afib for six months starts putting you close to long-term persistent a fib territory, meaning the chances of an ablation are diminished.

Jim

[Mightnot in reply to mjames1]

the doctors said that I need to be out of AF in regular beats for 6 months or so after a cardioversion. I go back to AF after about 2 months. I have read on this forum people who have had ablations without this period of being out of AF

[mjames1 in reply to Mightnot]

the doctors said that I need to be out of AF in regular beats for 6 months or so after a cardioversion.

By this metric, I may have been denied an ablation as well as many others. It makes no sense, unless there is something else behind it. In fact, at a certain point, if your afib burden keeps increasing, the chances of a successful ablation will decrease. If I cannot get an explanation that makes sense to me, I would seek another doctor.

Jim

[Mightnot in reply to mjames1]

I have seen several doctors privately for consultations and these are the same doctors that will do the work on the NHS after waiting for a long time. They will I guess have budgets and targets and if the recommendations states "be out of AF for X time before ablation" then that might be the simple issue. I could pay privately but it would cost a lot and many times I would need multiple ablations based on the replies here

[mjames1 in reply to Mightnot]

I haven't gone through every reply here, but it seems that most of them seem to be focused on the Amiodarone and issues other than the six month wait. I wish I could help you more but my experience is with US protocol's although I do remember UK patients not having to be in NSR for six months post cardioversion to qualify for an ablation . But that's just my recollection, so maybe start another thread more specific to this point, with a heading something like ..."Anyone had an ablation without having to be in normal rhythm for six months after their cardioversion?".

Good luck.

Jim

[Mightnot in reply to mjames1]

I had a different thread and some people replied about not having to have a cardioversion or be out of AF for a set period prior to an ablation. However, they may have been abroad and not in the uk but I guess it depends on the consultant, the part of the country etc.The postcode lottery is a real thing

[mav7]

Do you have other heart conditions that may cause the doctor to hesitate to perform an ablation ?

If you have not, recommend evaluation by an Electrophysiologist (EP). Ask GP or Cardiologist for a referral.

[Christobel23]

Has dronedarone been suggested instead? It has less side affects but needs to be monitored monthly the same as amiodarone. I've been on dronedarone since December and only side effect is dry skin .

[Mightnot in reply to Christobel23]

no this was not mentioned - i have looked it up and it is basically amiodaran without the iodine in it and there less toxic. it sounds better but I am in england and on the NHS and the consultants have said over the last few appointments via NHS or private that amiodaran is the only way forward - I will mention this but I have mentioned some other less toxic drugs but they always say that the toxicity is only an issue if i am on it for years and not for 6 months to keep me out of AF and then to have ablations etc

[JoDogBlue]

My experience is that amiodarone does help maintain NSR after cardioversion. As for side effects you will need to be monitored for thyroid function. It's common to experience sun sensitivity on amiodarone and you are advised to wear sunscreen when outside even on cloudy days. Of course all side effects are an individual thing... I'm currently on amiodarone waiting for a cardioversion as I've been in AF for 8 weeks following an ablation. The combination of bisoprolol which makes me tired and amiodarone which stops me sleeping well and gives me vivid dreams when I do sleep isn't great!

[Mightnot in reply to JoDogBlue]

thank you for the reply - are you in the uk and treatment on the NHS

[JoDogBlue in reply to Mightnot]

Yes I'm in the UK with NHS treatment

[Mightnot in reply to JoDogBlue]

What dose are you on of amiodarone as I have read the higher dose the most dangerous side effects

[JoDogBlue in reply to Mightnot]

200mg daily

[Mightnot in reply to JoDogBlue]

Are sleeping and vivid dreams the main side effects for you?

[JoDogBlue in reply to Mightnot]

It disturbs my sleep, I'm out like a light then wide awake an hour later with fitful sleep the rest of the night. I do get burning skin with even mild exposure to sunlight if I'm not covered up and wearing factor 50

[Jajarunner]

Hi, been on amiodarone for 15 months after three failed ablations in 20 months. I experience halo effect around bright lights though this is less since we halved the dose to 100. Thyroid levels have jumped around a bit but I had under active thyroid anyway. Amiodarone has given me my life back after 12 cardioversions in three years, once only 18 days apart. I'm now running, cycling etc again and feeling great.

My cardiologist thinks it's a brilliant drug with side effects for the few. My arrhythmia nurses agree. My electrocardiologist hatesit!!

Seems most of the side effects used to occur in olden dayes high doses.

I'm not blue but I do burn even easier than before. Please feel free to ask me any other questions.

I'm waiting for a fourth ablation and have little confidence it'll work and am dreading the 4-6 months of feeling exhausted. I'd stay on amiodarone for ever if could 🤣

[Mightnot in reply to Jajarunner]

thanks so much for the reply. When I am in af I don't feel as bad as you suggest you feel and others on this forum have felt. I can't run etc but I would say I am about 20% less energetic when in AF. So in terms of quality of life ( putting aside the effect on my heart of af) I don't want worse side effects from the drugs I take to help me get out of AF. The halo effect sounds terrible. I feel eyesight problems more than turning blue!

[Mightnot in reply to Jajarunner]

thanks for the reply - what dose did you take of amiodaran and for how long? YOu said that 100mg a day was the dos that affected them the most - do you get many issues with 50mg?

[Jajarunner in reply to Mightnot]

I was taking 200 but now reduced to100. The halo is not that bad - only round bright lights at night - very pretty actually - like a rainbow. Had optician check my vision and it was fine. The main problem is that the toxicity of amiodarone increases over time.

[Mightnot in reply to Jajarunner]

I read an article and a low dose is under 100 and lowish is 200 . Very few people have reactions to 100 or 50 so I will ask to go as low as possible with amiodarane. The halo effect sounds horrible to me. I read that in the past peole took 800 mg for long periods and that will I think be where the very serious issues arose

[Jajarunner in reply to Mightnot]

The halo really is very small!! But you are right about the dosages, my EP said the lowest that works is best. Some lighter, older people even take 50.Good luck

[GordonS]

I've been taking Amiodarone for 8 months after a failed CV whilst waiting for ablation. After about 6 months I went back to normal sinus rhythm. I've been able to come off Bisoprolol and now able to exercise normally. For me the Amiodarone has been a success in that I am back in normal rhythm. I've had the blood tests before and after 6 months and there has been no significant changes. My only side effect is that I appear flushed most of the time and I am being careful to use factor 50 sun screen. Even so I can see that I have become more sensitive to the affects of the sun, not that we've had a lot of yet in the NW of England.

[Mightnot in reply to GordonS]

thanks for the reply - what dose did you take of amiodaran and for how long? Someone said that 100mg a day was the dos that affected them the most.

[Mightnot in reply to GordonS]

thanks for the reply - what dose did you take of amiodarone?

[GordonS]

I've been taking a daily dose of 200mg since October 23 so nearly 8 months now. Hoping to get my 3rd ablation before the 12 months are up. It's definitely not intended for long term use.

[Mightnot in reply to GordonS]

I read an article and a low dose is under 100 and lowish is 200 . Very few people have reactions to 100 or 50 so I will ask to go as low as possible with amiodarane. thanks for the rely - I hear a lot of people have had multiple abalations and my doctor said i would definitely need 2, You will have 3 - is it a trial and error process?

[GordonS in reply to Mightnot]

3 is not unusual some on here have had lots more. Not trial and error but sometimes the pathways reconnect after time. My first was RF (8 years) and the second Cryo (4 years) waiting to see the EP on 10/6 to find out more about the next one.

[SummerBoater]

I’m 57 and I’ve had Afib for about 10 years. For years it was controlled somewhat by bisoprolol and diltiazem. Eventually came off the diltiazem for a few years then episodes came more frequently. They then gave me 50mg flecinaide twice a day with the bisoprolol, that worked for a few years (always have episodes everyday). Cardiologist referred me to a EP cardiologist, for ablation. Also had a mini stroke in Sept 2023, After a 18 month wait I had my ablation done Dec 7/23., then I ended up in ER a few times with high heart rate and not being able to convert back to NSR, on Dec. 26/23 went with to ER with Afib and heart rate of 145 they gave me more beta blockers and lowered the HR to 100. (My resting heart rate is 41). Went home and back to the ER the next day, HR back in the 140’s, they gave me more beta blockers then did a cardio conversion, that was my 1st one. It converted back to HR of 41, awwww that feels better. I live 40 minutes from hospital, when I got home I was back in Afib, so defeated. Cardiologist takes me off flecinaide in February, as it obviously wasn’t working and put me in aminodarone 400mg for two weeks then 200mg per day with the bisoprolol, and referred me back to the EP cardiologist, It helped but had episodes everyday. I had my 2nd ablation on May 28/24, they did an ablation for flutter this time, and did 19 burns. I was told to discontinue the aminodarone and just stay on edoxaban and the bisoprolol (I was on aspirin until I was 54 then switched to edoxaban). I feel better but still having brief episodes each day., and highest HR of 109. Hoping when the blanking period is over they will subside. I couldn’t wait to get off of the aminodarone, it is a horrible drug. I already have thyroid issues have been on meds for 26 years. I definitely was more sun sensitive, so afraid of the blue skin issue (I’d say I didn’t know if I was going to turn into an avatar or a Smurf, all jokes aside I was worried) The drug stays in the system for about 3 months, so will have to be careful of the sun this summer.

I would definitely be asking for another EP Cardiologist, if they say you have to be in Afib for 6 months. I was never continuously in Afib except for that one time of 60 hours after 1st ablation.

I would find a cardiologist that would refer to EP cardiologist to have the ablation. I opted for the ablation because I wanted my life back, I felt I had no quality of life. Exhausted all the time, feel absolutely horrible when in Afib with high HR, could hardly function.

As I said before I feel better after this ablation but if it doesn’t work, I’ll still opt for number 3. Dr said on Tuesday that I went into Afib on the table but converted after he did a flutter ablate. He felt the flutter may be bringing on the Afib but to consider another Afib ablation, if this one didn’t work. So I have my fingers, toes and eyes crossed this one works.

[Mightnot in reply to SummerBoater]

Hi - I can empathise a lot with your post. Thanks for posting that. I have not had a stroke but I am a similiar age. The toxicity of the drug is a worry. I read the article suggested by ppiman and a low dose is under 100 and lowish is 200 . Very few people have reactions to 100 or 50 so I will ask to go as low as possible with amiodarane. thanks

[Ppiman]

The very best thing to read online is a large study of its safety when used in the modern low-dose way. Just search "Low-dose Amiodarone Is Safe: A Systematic Review and Meta-analysis" and you'll see the study. It's very helpful, I feel.

Steve

[Mightnot in reply to Ppiman]

I read the article and a low dose is under 100 and lowish is 200 . Very few people have reactions to 100 or 50 so I will ask to go as low as possible with amiodarane. thanks

[Ppiman in reply to Mightnot]

It has also a uniquely good effect, I gather, not only that it works well, but that, unlike other anti-arrhythmic drugs, such as flecainide, it doesn't promote dangerous arrhythmias.

If I were taking it, I would still be be asking my GP to keep a regular and close eye on my overall health as lungs, thyroid and eyes can all be affected by amiodarone in some people.

Steve

[Mightnot in reply to Ppiman]

I will be doing this - as it is a worry

[Ctchrise]

Hi,

I've had afib for about 25 years. I am now 72. I was on Flecainide in early 2000's for a couple of years and it worked fairly well for me, but I'm fairly positive it resulted in hearing loss in my 50's. It is listed as a side effect now but wasn't back then. I've had 3 ablations in the past . The 2nd one in 2013, resulted in 7 years of being free of Afib. The Afib returned about 4 years ago. The 3rd ablation didn't hold and I was in persistent afib this last period of time. I'm now on Dofetilide which has kept me out of afib for the past year. I am also on Metaprolol and Eliquis and feel pretty good. I've been on fairly high doses of the Metaprolol at different times without having any side effects. I was on Amioderone for a short time and Multaq for a while too. Amioderone made me nervous because of the side effects. My experience is short term a higher dose of the beta blocker will slow your heart rate down enough so your symptoms will be less. The ablations now are so advanced that I would recommend that route to anyone that lives with Afib. I was off of all drugs except a low dose of the beta blocker for all 7 years after the successful ablation. I wish you luck with this.

Chris

[Mightnot in reply to Ctchrise]

Thanks for the advice and information as it it much appreciated. Are the metprolol and Eliuis used for post ablation? I have not heard of these in the posts that I have read

[Ctchrise in reply to Mightnot]

Metaprolol is a beta blocker which a lot of Afib patients are on to slow their heart rates. Eliquis is a blood thinner which most Afib patients are on-especially after a certain age.

[JOY2THEWORLD49 in reply to Ctchrise]

Hi

For me Metopolol as a beta blocker does not control my h/rate.

The 24hr heart monitor showed 186 avg h/rate and pauses at night. Symptoms no energy to exert, sweating controllably on exertion, breathless and fatigued. I am not asthmatic cause you should not take it.

Bisoprolol another BB that does not put pressure on breathing function and is better if you have AF.

BBs control my BP only.

But CCB Calcium Channel Blocker works a treat on my rapid persistent AF.

H.Rate 60s Day on Diltiazem 120mg AM

BP controlled by 2.5mg PM

Nothing wrong with 132/69 60s Day. 47avg Night H/Rate.

cheri JOY. 75. (NZ)

[Mightnot]

thanks - these are maybe usa versions brands

[JOY2THEWORLD49]

Hi

It would be helpful to have your vitals. Heart rate Day and Night at rest and BP Day.

I was on 10mg Bisoprolol after Metoprolol and 186 and 156 avg did not control my rapid heart rate. I had persistent AF after stroke - no follow up. 47avg Night.

Drs simply put up the dose from the H/Specialist.

Introduced CCB low dose Diltiazem. AM. Now 60s day and remain 47avge Night. By private H/Specialist.

Reduced Bisoprolol from 10mg to 2.5mg PM. Controls BP.

132/69. 60s Day and 47bpm Night avg.

Well controlled I have had 2 operations since (not for heart). Otherwise they would not have doe them.

Any abnormality in the heart which I have its a NO to

cardioversion

ablation

anti-arrhymic meds

but slowing the h/rate and controlling it makes for the same job as an anti-arrhymnic med Flec...

3 x 24hr H/Monitor show how and proves that you are on the correct meds for your AF.

Size of my heart has already become normal size.

Was rapid, not now and persistent AF with no more symptoms of uncontrollable sweating and no energy for exertion.

cheri JOY. 75. (NZ)

[Mightnot]

I dont have an average heart rate pulse average- af so random finger monitor might read 56 then leaving it on for 30 secs it rises to 110 then drops. When i have done ecgs in a hospital or doctor can be high or low - its so irregular than an average doesn't tell me much - if I do the reading multiple times then maybe 80 to 110. I never take blood pressure as always normal when in the doctors

[RF260]

Hi there, reading this post as I'm in a similar position (persistent AF for last 6 months, never really had many paroxysmal events, just straight to persistent). Had echo, holter etc and am going to have my first CV in the next few weeks. They have asked me to consider amiodrone and I think I'm going to give it a try , hope it helps along with the CV to get me back into rhythm and give me back some energy and improve quality of life. I've lost 2 stone in last 18 months (17.5 down to 15.5) but not feeling any benefit due to the A F sapping energy..Did you decide to try Amiodrone? Did you have any more CV's ? Are you on waiting list for ablation ? And how are you now ?

Thanks in advance.

[Mightnot in reply to RF260]

yes i had another cv in sept and not in af since them. I have other issues and on gabapentin for nerve pain ( unrelated to heart af) and these can put me into af. When I am in af I am maybe 20% less energy so not wiped out but it makes a difference. However, pain from other things making me take drugs that might put me into af. Amiordan - I have spoken to nurses and doctors and all say low doses are safe and the extreme reactions are very very rare and due to incorrect dosing and over loading. I decided to have cardio version then if go into af wait for ablation. I am on waiting list for an ablation and told in may to sept at least a year waiting list so if I go into af again I will be just having to live with it until ablation

[RF260 in reply to Mightnot]

Glad you have remained in NSR for a decent while now. Funnily enough today I have (according to my Kardia) gone back into NSR and I'm only in week 2 of the loading dose of Amiodarone..So I need to see GP and get a proper ECG then I assume my CV planned for mid Feb will not be necessary. I'm gonna stick to Amiodarone in the meantime and see what the medics say, I have blood tests at end Jan but hopefully no issues as will only have been on it a month although I know it takes months to work through even if you stop. Good luck whenever the ablation occurs.

[Mightnot in reply to RF260]

amiodaran is supposed to keep you in nsr so that is good. I hope you still in it

[Mightnot]

yes i had another cv in sept and not in af since them. I have other issues and on gabapentin for nerve pain ( unrelated to heart af) and these can put me into af. When I am in af I am maybe 20% less energy so not wiped out but it makes a difference. However, pain from other things making me take drugs that might put me into af. Amiordan - I have spoken to nurses and doctors and all say low doses are safe and the extreme reactions are very very rare and due to incorrect dosing and over loading. I decided to have cardio version then if go into af wait for ablation. I am on waiting list for an ablation and told in may to sept at least a year waiting list so if I go into af again I will be just having to live with it until ablation