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Amiodarone...side effect!!! Chronic insomnia

DizzyD profile image
20 Replies

I was put on Amiodarone 3 days ago and it has helped somewhat with severity of AFib attacks. Still having episodes but they are not severe enough to prompt medical attention which is a great improvement in my case, considering the amount of recent a+e trips along with hospital admissions to ACU due to severe tachycardia..!The downside is, third night in and I have reached a point whereby I have not had a wink of sleep. I can tolerate this for one or two nights but if insomia becomes the norm I will have to stop taking Amiodarone.

This medication does cause insomnia. Lack of sleep (total insomnia) is sooo detrimental to ones mental health and overall wellbeing...I cannot function without sleep. Likewise, I cannot function with the severity of frequent AFib attacks. Given a choose the Amiodarone may have to go it I cannot find away to resolve insomnia issue.

Has anyone experienced absolute insomnia on the medication? If so did you find a solution ie support from GP like a sleep medication? Forgot to mention Amiodarone strength is 200mcg

Really would appreciate some feedback.

Thank you in advance.

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DizzyD
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20 Replies
CDreamer profile image
CDreamer

My husband has been on Amiodarone for 4 years - now reduced to 100mg maintenance dose and has never had any problem sleeping - anywhere, anytime. It is an individual response.

You are correct, good quality sleep for at least 6-7 hours is essential for good health. Sleep can also be habit so if you weren’t sleeping because of the AF prior to the starting the Amiodarone it may be you have got into the habit of not sleeping.

I used to suffer from sleep disturbance as I had pulsatile tinnitus from nocturnal AF and found that distraction worked best - I put ear pods and listened to the most audio boring book I could find, that worked as I just got used to the nocturnal AF.

It seems throughout our AF journey the ‘cure’ often causes another problem so we are constantly fire fighting.

DizzyD profile image
DizzyD in reply to CDreamer

CDreamer do you have any idea when your husband was put on maintenance dose of 100mcg? I think 200mcg is too high a dose for me. My HR is far too low...does not raise much when doing 3 to 4 mile treks. Feel I have bloody heart failure now.Thank you

CDreamer profile image
CDreamer in reply to DizzyD

Yes - I blogged about it at the time and asked for opinions and got some great responses - it was about 2 years commencing treatment - link to the thread from 2 years ago.

healthunlocked.com/afassoci...

Note the reply from JohnathonPittsCrick- EP at Bristol.

He is still taking 100mg but now has Hypothyroidism treated successfully with low dose thyroxine. He also now has an AF burden of about 7% but given that there were no other better options I would say that it has given him a quality of life he would not otherwise have had without the Amiodarone.

DizzyD profile image
DizzyD in reply to CDreamer

Thank you CDreamer the link you sent me was very helpful indeed. Especially the comments from JohnathonPittsCrick which is very reassuring. Got a review 18 May at AFib Clinic to check how I am doing on the Amiodarone. By that time I will have been on it for 5/6 weeks only but still going to request that the dose be lowered. Spoke to a Dr in Sheffield today about HR being too low on this medication and he also suggested that dose might need to be lowered.Sincere thanks for your help and support...it's priceless

SeanJax profile image
SeanJax

so easy to resolve. Ask your GP for some sleeping pills . Don’t tell your GP that you did not sleep at all three days in a row. Nobody can survive without sleeping for three days in a row. You would become incoherent and go into some psychotic state.

DizzyD profile image
DizzyD in reply to SeanJax

Did not say I had no sleep three days in a row. Third night after being put on medication is when I got no sleep at all. Previous two nights sleep was effected but I did get some snippets of sleep. Third night no sleep at all.

KootenayTrails profile image
KootenayTrails

I am also interested in replies to your post, as I was just today switched from dronaderone to Amiodarone, due to daily Afibs and other arrythmias recently. I have sleep issues as it is.

bmurph profile image
bmurph

Hi , I have not experienced insomnia. What I would say is that it took my body a few weeks to adjust to the medication. You will know from reading the drug information leaflet what the major side effects are and when to seek help. Sometimes this medication is the last port of call if you have been tried on all of the others. And then it’s the usual balance of can I live with some side effects if A fib under better control. It sounds as if you are having a difficult time. I would suggest hanging in there for another few weeks!

DizzyD profile image
DizzyD in reply to bmurph

Yes I thought this med was my last post of call until I read GooseEggs reply below.

GooseEggs profile image
GooseEggs

My mother was on Amiodarone and had other very serious side effects (tho not sleep disturbance). She quickly developed pulmonary fibrosis (Lung scarring) in a very short amount of time--which her cardiologist refused to believe. However the pulmonologist confirmed it and knew Amiodarone was the cause. It is a deadly side effect unless caught early enough. (She also had the dry cough and other symptoms.) She's now on Dofetilide which has a different make up than Amiodarone and she is tolerating it nicely. Instead of adding another pharmaceutical such as sleeping pills (with other potential side effects), consider possibly asking about a diff anti-arythmia such as Dofetilide (also known as Tikosyn)...

in reply to GooseEggs

Hi GooseEggs great to hear your mum is doing better on Dofetilide. So far I have been taking Amiodapine 1x3 times daily. Gone down 1x2 today. Since being put on it I have been having AFib almost everyday but that does not concern me because I keep telling myself that it will take time for meds to fully kick in. Not sure if i am going to last that long on this drug because I now have more urgent problems in the form of terrible pain in left side lung and now coughing up phelgm which is new for me. My Left side lung is already significantly scarred after catching covid Dec 2020. Not sure if I should be taking this drug at all considering pre-existing lung damage. Did you mum have any problems with her lungs prior to taking it?

whoops not sure whats happened here: my user name is dizzy D but its shown up as StormT

GooseEggs profile image
GooseEggs

Hi DizzyD / StormT, no my mom did not have any lung issues at all before taking Amiodarone. In her case, the lung scarring must have started quickly because she was only on Amiodarone maybe 5 or 6 weeks. Coughing started perhaps within a few weeks. If I recall, it was more of a dry cough. She also was very restless at night--(she sleeps well with no issues before or after taking that drug). Also had noticably reduced appetite. Weakness and fatigue. The GOOD NEWS is if you're allergic to it like my mom was (she was "hyper-allergic" according to the pulmonologist) and it is caught early enough and discontinued, the lungs can often recover. My mom had a catscan a year later and the lungs had cleared. If one stays on the drug and pulmonary fibrosis continues, my understanding is that even after stopping the drug, the lung disease will continue to progress and is eventually fatal. Her 'highly-regarded' cardiologist was steadfast she was not allergic to that drug but of course, she was. If we had listened to him and kept giving it to her, she'd have declined quickly (it was fast decline after a month) and would have ended up in the Emergency Room, where they would continue with her meds and she would have died...and I doubt we'd ever have known it was the drug. If you google Amiodarone law suits, there are many class-action law suits over deaths caused by pulmonary fibrosis. There are always alternative drugs but doctors tend to stick with the ones they routinely prescribe even if there may be a better alternative.

DizzyD profile image
DizzyD in reply to GooseEggs

Ahhh you are based in US....Emergency room! Don't think any doctor here in UK would prescribe this medication. But not sure if a private cardiologist would. Do know I have to get off Amiodarone asap. Considering pre-existing lung damage I could be prone to further lung damage sooner rather than later. The so called experts are not always right are they?

GooseEggs profile image
GooseEggs in reply to GooseEggs

Also, be aware Amiodarone has a long half-life, meaning it takes awhile for it to leave your body.

DizzyD profile image
DizzyD in reply to GooseEggs

Hi GooseEggs hope you don't mind me asking: what was the dosage of Amiodarone your mum was taking?My dosage is 200mcg....down to taking 1 X daily now. My heart rate is far to low, only raises to 85bpm during 3 to 4 mile walking exercise. On same walks, pre Amiodarone, my HR would rise to 125/130. Not much benefit doing exercise anymore. On this drug feel like I have heart failure, that's on top of ache/pain left side of lung that radiates into left breast.

I am considering lowering my dose from 200mcg to 100mcg daily. Yes the long Half-Life of this drug is a real concern which I will have to deal with somewhere in the future. My AFib attacks have reduced but at what cost?

Rainfern profile image
Rainfern

Hi Dizzy, this is rather a late response, but I have recently been put on amiodarone prior to having a second cardioversion and am exploring the forum for information. I just wondered if you overcame the insomnia side-effect. So far this has been the only side-effect I’ve noticed and it’s horrid. Some nights I’m down to 3 hours sleep. Six hours sleep has become a real treat. I hope you have found a solution to your own problem with sleep and that you are keeping well. Jo

DizzyD profile image
DizzyD in reply to Rainfern

Jo I replied to your msg below.

DizzyD profile image
DizzyD

Hi Jo sorry for late reply. After my post above my sleep did improve somewhat for awhile but now it's worse than ever. At bedtime I fall asleep for roughly one hour, then I wake up an wide awake. I fall asleep again at about 5am for a few hours. In all honesty, I cannot go on like this it's so detrimental to my general health and mental well being.

I have been taking this med for about six weeks now. How long have you been taking this med? The reason I am asking is because I suspect that it may have effected my thyroid hormone levels which can cause insomnia. As a process of elimination I am getting a private thyroid function test asap.

By the way I don't have a thyroid....take levothyroxine but t Amiodarone can interfere with conversion of T4 to T3 by raising levels or reducing them. Raised levels of hormones....hyperthyroidism symptoms. Reduced levels of hormones...hypothyroidism symptoms.

I sincerely hope your sleep as improved over the past four days. In my book there is nothing worse than insomnia. Good luck.

Rainfern profile image
Rainfern

Thanks for your reply Dizzy. Sorry to hear insomnia is still a problem. I’ve been on amiodarone for nearly 3 weeks. I asked that the dose be kept small so haven’t gone through an initial high dose - just 200 mg a day from the start. Like you I’ve wondered if it’s already effecting the thyroid, hence the insomnia. Also I seem to have more energy despite being in persistent AFib - no change there. If waiting lists allow I shall be having another cardioversion and the drug is to help me stay in NSR longer than a week this time.

My mum in law had no thyroid from around age 50. She always had such energy once getting the right treatment and remained lively and sociable over the next 50 years despite various unrelated health problems. Age 100 she had a big party, telegram from queen etc. So what I’m thinking is - you really don’t need something messing up that fine balance. So it does seem wise for you to be getting more regular thyroid tests than normal, even if you have to pay. If nothing else it will put your mind at ease. I would probably also want the opinion of an endocrinologist.

Fingers crossed for better nights sleep!!

DizzyD profile image
DizzyD

Congratulations to your mum on reaching her 100th birthday despite having had a thyroidectomy 50 years ago. Brilliant example to all of us. She must have had a really good endocrinologist. Unfortunately I did not. Managed to get to see my endo late 2019 after cardiologist said that my thyroid levels needed sorting out because the heart symptoms I was having could be due to dosage of levo medication. Got to see endo. Long story short, he actually said, "I have looked at your thyroid treatment going back 30 years and found that you have been severely over medicated with thyroxine for all that time." He went on to say " This has more than likely damaged your heart which is why you are totally burnt out and presenting to cardiology with heart symptoms". I was shocked beyond belief. Notably he failed to mention how many times endo department failed to refer me too a cardiologist after all the times I complained of palpitations. So thyroid medication contributed greatly to my damaged heart. Since early 2020 been diagnosed with, enlarged heart, hypertension, mild mitral stenosis, blocked artery and AFib. 16 May 23 had stent fitted despite artery only being 50% blocked. Ohh was also diagnosed with angina when stent procedure was being carried out.

Given the above I find it extremely difficult to trust doctors or medications of any sort. Now here I am on the most toxic medication of all due to an a+e cardiologist who insisted I take Flecainide dispute the fact that I told her my cardiologist did not want to put me on this medication until he done a angiogram to determine extent of blocked artery. After being on Flecainide for two days had most severe, life threatening AFib ever. Was admitted ACU for four days. Hence the Amiodarone.

If my thyroid levels have been impaired I do not intend going for the option of adjusting my thyroid meds. I want to be taken off of it.

If the need arises make sure you have a good endocrinologist like your mother has.

Good luck with your sleep lovely.

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