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Worried about Afib and Amiodarone after effects.

Hi,

This is my first post.

I have had Afib but unknown for about 5/6 years. Did not realities or digest it when first told and put on warfarin. Had heart valve op in Jan 2016, this year, op was Ok have tissue valve, but afib went bananas in ICU. Still cant control it, had Amiodarone and Bisoprolol. Got stopped Amiodarone about 6 weeks ago by cardiologist but Bisoprolol upped to 10mg. 5mg in morning and 5 mg at night. No have thyroid problem because of Amiodarone and all the iodine in it. They never told me anything hospital about Amiodarone. Thyroid affects pituitary gland so sleep goes out the door and the afib is worse. I keep a sleep diary. If you really want to see how little sleep and my desperation then please ask and let me have your email. I am desperation I have threatened to take my own life, started self harm but only got my poor wife, who is not in best of health to listen and she is finding it difficult. I just wish had someone on end of phone line even to share and maybe help and understand.

Any thoughts appreciated

Norm

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Sorry to hear of this and all your problems.

I suggest that you contact your GP and explain your feelings and predicament. Another alternative is the arrhythmia / cardiac nurse at the hospital you were in.

If for some reason you don't want to do this I suggest that you contact the AFA Patient Services on 01789 867 502 and they will be able to help you get in contact with the right bodies to get help and support.

In the meantime as questions on here and also read the publications on the main AFA website.

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Thanks for phone number etc. Waiting for them to call me back.

It appears to me that many patients either with or without heart problems and you can include Afib as a heart problem do get enough information from hospitals, doctors or nurses about their treatment or medication. I had my Aortic valve replaced in January 2016 with tissue one and one by pass.

I was put on Amiodarone but never told about the drug any possible side effects or anything. I also found that the aftercare after I left hospital was left to GP and although I have a good GP they are after all only GP's not specialists.

I have now found out that Amiodarone is a very nasty drug but what gets me is that no one explains anything to you. The cardiologist that I saw last month and took me off Amiodarone wrote to my GP and said he had listened to my metallic aortic valve and all was well. When I spoke to his secretary and pointed out that I had a tissue valve all he did was issue a replacement letter and changing it. Where do they get these doctors.

Anyway I am now trying to get referred back to local cardiology to see what can be done.

Thanks for any input or help but I am really down, probably lack of sleep with the Afib

Norm

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Sorry to hear of your woes Norm. I had a tissue aortic valve replacement four years ago and was on Amiodarone for 7 years before that and for a short while after the op. People on this forum will have heard how unhappy I was with one cardiologist's management of my condition and the effects that Amiodarone had on my thyroid, eyes and hair loss. I have a different cardiologist now, which I had to insist on.

Amiodarone really helped with Afib but is not now recommended for long term use. My medication for Afib is now Bisoprolol and Digoxin. I get on with both of those and have refused a return to Amiodarone.

I do still get episodes of Afib but it is slow.

Things do take a while to settle down after an operation. I am sure that someone in this group will mention both cardioversion and ablation and recommend that you see an EP. I did have one cardioversion that worked for about 16 months and stopped the Afib but I have not asked to see an EP with a view to ablation. If this is suggested to you, weigh up all the options. Ablation works for some people but is a serious procedure and often requires repeating.

To some extent you have to be your own specialist. Keeping a sleep diary is good and you might want to extend that to noting your episodes of AFib and how long they last. People will also mention various monitors that you can buy. Personally I just use a pulse oximeter and a BP machine. Again, monitors aren't for everyone and make some people more anxious.

Have you been offere anticoagulation?

I can relate to many of the issues you raise.

Pat

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Thank you for that information but please what is an EP?

I have been on wafarin for some years. I got upset because when I went on warfarin I was lead to believe that it was because of my aortic valve deteriorating when it was because I had spasmodic afib, but no one told me. I did not even feel it until after my operation.

I am looking to get my GP to refer me to cardiology again with a view to serious discussions of the risks of catheter ablation.

I don't mind the warfarin but no more Amiodarone.

Just had phone call from GP with latest thyroid blood test, shows TSH is down from 7.55 mu/l six weeks ago and am to have another test in four weeks.

From what I can tell I have Afib full time but generally don;t notice it during the day, it's really bad at night when quiet and I have to wear ear plugs because of noise from out of room and wife has rhinitis.

Any comments appreciated it all helps me so thanks

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An EP is an electrophysiologist, a doctor who specialises in arrhythmia of the heart. Someone on this forum compares an EP to an electrician whereas an ordinary cardiologist is a plumber!

You are so right about them not telling you what you need to know. I opted for a tissue valve because it meant that I wouldn't need warfarin. No one told me that I would need it for AF as I had been on aspirin for years. SImilar experience to yours. Fortunately, I have since been able to change to a different anticoagulant.

Another thing that has helped me was doing a course on mindfulness, which includes meditation exercises. It helped me relax through the episodes.

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Did you have AF prior to your valve replacement or like me are you one that developed it because of the procedure?

Are you now taking a NOAC? They are contra indicated for tissue as well as mechanical valves. All the makers confirmed that to me. It is on all of the NOAC patient information leaflets and in BNF but cardiologists and EP's say in their God like way that we can over ride that.

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HI Seasider - your situation may be different to mine as I had a congenital defect that eventually impacted on the heart's function. I think I had AF for about 7 years before I had the op but my consultant wasn't a great communicator. I just assumed it was the valve deteriorating.

Yes, I take an NOAC. I've read all the info and discussions on here. It seems to be that no one has absolutely defined valvular fibrillation. I have a lot of confidence in my current cardiologist. As people on this forum will know, I loathed warfarin and can bore for England on the subject.

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I don't like Warfarin either nor is my GP happy with me taking it. I hope to get on the Amplatzer Amulet trial or else go for the Watchman device.

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For everyone's clarity an EP is a cardiologist who has specialised in arrythmia.

There are also cardiologists who have specialised in heart valves.

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And yet more cardiologists, like mine, who specialise in adults who have congenital rather than acquired conditions. There is a subset of surgeons at the bigger hospitals as well.

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Hi Norm, what you are going through is horrible. I can empathize to a degree as I had spent a year where my EP doc tried various meds none of which worked. At the end of the year he offered to possible solutions. 1 Take amiodarone 2. Have an av node ablation. After researching amiodarone I immediately decided to have the av node ablation. This was a last resort decision and I am glad I did it turned my life around. I am able to take my walks again and I don't spend most of my time in bed as I was doing before. I am not recommending that you do this Norm but I would talk to your Dr. about it to see what he thinks. If you have questions about this procedure let me know I can tell you about my experiences. Ed

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Thanks for your support. I am glad to be off amiodarone and I had blood test result Friday that my thyroid is righting itself and my Bisoprolol is just about holding its own but my Afib is still really bad at night but I have a good GP and don't have any sleeping drugs, may be a few herbal now and again but as appears with most medicines the body get used to them and their effect wears off.

I am seeing my GP again on Friday and aim to ask for referral for ablation. I have had afib for at least 6 years but until the aortic valve was replaced in January this year I didn't even know I had afib, failure of doctors to explain or say failure of me to ask right questions, and it didn't worry me. Now it all hell especially at nights. I have much to find out about ablation before i decide, any one know of any good sources would be helpful. I have some items AFA, The Heart Rhythm Charity, and a booklet from Queen Elizabeth Hospital in Birmingham. Any others appreciated.

And thanks for the support and I'm glad it is working out for you.

Norm

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I wish you well and hope your Dr can find a course of action that will work well for you.

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I am hoping that the way you were feeling is already less oppressive because the forum is a great source of information and support. May the dark days start to lighten for you. It can be a downward spiral when things are not going our way in any direction. As good ways forward become clearer with AF, and with your sleep and thyroid issues you may start to feel you are making progress. When something does get satisfactorily resolved, leaving despondency behind you makes the progress feel all the sweeter.

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Hi Norm,

I'm so sorry to hear about all your problems. I had a pulmonary valve replacement and tricuspid repair back in 2013 ( this wasn't my first ) and unfortunately got afib after my surgery. I too, like yourself was put on amiodarone and was not told about the medication, ( my side effects still to this day effect me).

Like yourself, I rarely sleep. I can fall asleep at midnight-ish, after tossing and turning for ages to wake again by 3-4am with my afib going haywire. It's so unbelievable and the noise from my heart beat is horrendous. My hubby even hears it and knows when it's playing up. I am lucky if I get 4 hours a night sleep, and even then it's so disturbed that it's pointless to even state I get that much.

I was removed off the amiodarone after 6 months of being on it and allowed back on my bisoperaI. I was placed on warfarin straight after my surgery and also ramipril too.

I now take 10mg bisoperal, 5mg ramipril, 250mg digoxin, warfarin, 50mg spironlactone and butamide and my afib is still bad.

I was offered the ablation which I turned down as my heart problems are so complex. I was told I would be lucky if it worked for me and if it did work it could cause more complications. If it was successful it would only work for a few months and it could only be done the once on me. So I ruled it out, but it's definitely worth investigating for yourself.

Just know that you're not the only one going through all of this and like yourself there are many more of us up in the wee hours of the morning. I thought I was on my own going through this and thanks to this site now know that I'm not.

I hope that this helps, you can always message me if you want to talk to someone.

Take care, Sarah.

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Would an Av node ablation help?

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I don't want to go down that road as I had a cardio version in November 2016 which put me back into sinus rhythm which is still holding good.

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I'm glad that is working for you Norm.

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Hi Skipabeat.

They have mentioned that. But they're not sure if it will cause more damage to my heart. Their discussing it again over the next few weeks as there thinking of doing it as a joint surgery with my pacemaker.

Things crossed.

Thanks Sarah.

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Hi Norm, so sorry to read of your difficulties. I cannot contribute much more to what has already been said except to offer a little of what I have learned through diagnosis of several chronic conditions:-

1. Unless you ask the right questions you won't get the answers.

2. You won't know the questions to ask unless you do your own research.

3. When doctors prescribe medications such as Amiodarone they don't explain the side effects, but most are described on the accompanying leaflet and there is a lot of information here on the Internet.

4. Every single drug, especially asprin most of us would believe is innocuous, carries significant side effects and it is always a risk:benefit assessment as to whether or not it will help.

5. I think we need to be active participants in our care rather than passive for several reasons, the main one is what I have found is that if I ask the 'awkward' questions I tend to get more information and be treated completely differently - took me a while to catch on to this as I think we tend to presume the doctors know more than us, and they obviously do as they have the training for medical training but not necessarily of the complex side effects of drugs - the pharmacists often know more. And none of them have usually ever had to take these drugs and suffer the side effects!

6. When doctors feel helpless to offer anything else, I have noticed, they don't know what to say and that can come over as being disssmissve but is often a defence mechanism for 'I don't know what else to do and I have nothing else I know of that I can offer' - but they cannot say it!

Adjusting to living with AF, or any chronic condition, is difficult but the first step I have found, is to first take back some sense of control.

You can refuse treatments but you cannot demand them. You can ask for a referral to a specialist who you chose - you can do your homework on who you think you might want to see on the AFA website as they have a list of specialist, both EPs and Arrythmia nurses.

Ask your GP surgery manager if there is any patient participation groups in your surgery as they often will run or know of self run support groups, ours does. It really helps to know and be able to talk to others with similar conditions and you learn a lot, as I hope you are now experiencing. There IS support out there and there are others who have been through similar to experiences, as you have heard.

Sleeping - many people find that the AF kicks off more at night or perhaps we are just more conscious of it - my solution was to prop myself up with a lot of pillows and like you, used ear plugs but in my case I used audio books so I was also distracted. The really boring books worked best, nothing too interesting or exciting!

Keep posting, keep researching and keep asking awkward questions of the doctors.

Best wishes CD.

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May I suggest you ask your GP for some zopiclone to help you sleep, it worked wonders for me and helped with the AF . I know it helps me and having a good nights sleep is the best medicine. Just a thought. Be well Terjo .

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I do appreciate your thoughts but I had Zopiclone some while ago from a very unhelpful GP. Ended up with hallucinations and even fell down stairs.

Fortunately no injuries.

Now have another GP who has used shock tactics and taken me off all sleeping drugs. I can now drive again and although sleep is still a problem use herbal at times but like all drugs you get used to them. But now off of Amiodarone and thyroid is coming round I get a bit of natural sleep but also try to wear myself out during the day. Problem with sleeping drugs was also addictive. I would not touch Zopiclone again but it may suit some. Thanks for you input

Norm

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I am surprised at the reports of sleeping difficulties on amiodarone, because I am on it, and sleep well at night, but actually have trouble staying awake during the day. I often fall asleep watching TV during the afternoon!

What kind of dosage are you folks on? I was once on amiodarone 400 mg twice a day, now 200 mg twice a day, but shortly I am to drop to 200 mg once a day for a month before stopping completely (which will be 2 months after my ablation).

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I can only give my personal experience.

Had my heart op 21st Jan 2016, discharged 28th Jan 2016. on amiodarone, 200mg 3 times a day, dropped after 1 week to 200mg twice a day then 200mg once a day unill taken off on 23rd May 2016.

My sleep problems started about the time I went to 200mg once a day. Unfortunately the GP treated my symptoms and not the cause.

It transpires in May whilst discussing stopping the amiodarone that reason for bad sleeping was post traumatic stress syndrome, from operation and bad care in hospital. Once this came to light GP took action and although iodine in amiodarone, which is about 47% per 200mg was by then playing havoc with my thyroid GP has now just about got me back to normal with un-drugged natural sleep except for some odd herbal but will take a while longer before I get to what I was before my op.

I am glad you appear to cope better than I did with amiodarone for I class it as a nasty drug.

All the best

Norm

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NORM, have you been checked for sleep apnea? So many people with Afib have sleep apnea and it can actually cause an Afib episode. It won't stop the Afib but a good night's sleep will change your life. I've had Afib since 2008. I was always able to convert to normal heart rhythm on my own. I can't do that a anymore. I have persistant Afib. I've had two cardioversions which lasted 5 days and the second one 6 days. Therfore, i can't get an Ablation unless I am in normal heart rhythm. I take Amiodarone 200mg a day. It does not prevent my arrhythmia. Im.out of options. However, my cardiologist said many people live with Afib and medication is stopped. I do need Atenolol for heart rate and it's doing well. I am getting stronger and even went back to the gym. My blood pressure is great I just have to watch my heart rate. Everything in moderation now. I do get "winded" when climbing stairs but not short of breath. So I'm accepting the Afib with no other options. I will be taken off Amiodarone. I'm also on blood thinners. Pradaxa which is kind to your kidneys. I have stage 3 Kidney disease stage 4 is dialysis. I have to eat really healthy to save my kidneys. That's my story. Please get a sleep test. Some are done at home with a smart watch that measures your oxygen and your body tells the watch how many times you stopped breathing. I stopped breathing 37 times in one hour. After I started using my apnea equipment (CPAP) It went down to 3.2 per hour which is normal. I hope I have helped you in some way.....take care

KITTY

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Norm,

I was threatened by the hospital cardiologist when I yanked the IV of that stuff out of my arm. I know what I was doing. (see below) He was going go put me on legal lockdown....no kidding. I thought be won WWII!!

Anyway having studied natural medicine since '74 I knew what to do after my bovine aortic valve surgery. I ran my blood immediately out of hospital. hsCRP was 44! normal - 1

no kidding! ! It blows my mind they dump patients out of hospital at levels of extreme levels of cellular drug induced inflammation and ZERO referral and followup!! Medicine today is a combination of utter insanity and miracles. Cant say enough for my heart surgeon.

Upon discharge I was IMMEDIATELY self titrating the amiodorine oral (for safety sake) after hearing Yale and Harvard MDs talk about how dangerous it was. YEARS before. So that was a BIG heads up for me

Liposomal glutathione by Quicksilver. 4 x d and bunch Vit C and magnesium, fish oil (VIP) ET AL

I had some CRAZY heart arrythmias and fortunately was able to access magnesium IM 2cc along with 1cc B complex. and 1cc B6. talk about magic. within 10 min normal rhythm only had to do it twice ...oral after. I cannot emphasize enough how important that was. A4M doc can do.

go to A4M.com NOW

find a doc. go see him. STAT

Im still on MagTaurate and activate Bplex self prescribed. Also liposomal ATP magnesium. use melatonin and CBD oil for sleep., GABA occasionally. Im a doc and highly trained. but DO NOT self prescribe. see the A4M doc NOW

Do that and have faith in God and you will not believe the difference in 2 weeks. OR MUCH SOONER!

I will pray for you buddy.

Jason

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