Donedarone and ectopics

[President2012]

I was taken off Bisoprolol and put on Donedarone 400mg morning and evening a week ago . I have had some difficulties. My BP has gone up -mostly systolic, my pulsatilla Tinnitus has gotten worse - it’s now so loud that I cannot sleep. However, probably the worst is a large number of ectopics mostly PACs. I am fine when walking etc but when I sit down and try to relax the ectopics start . Sometimes they would last for 30 minutes or more. I have been told that if I cannot take this med then my only other option is to go back on Bisop and have an ablation if possible. At 80 years old I don’t want to do that. Has anyone on Donedarone had this problem of ectopics or pulsatille tinnitus ? Thanks

[BobD Volunteer]

I've had pulstile tinitus for years but never been on dronadarone.(multaq)

[President2012 in reply to BobD]

Thanks. How do you manage the pulsitile tinnitus? It’s driving me mad.

[BobD Volunteer in reply to President2012]

I suffer.

[President2012 in reply to BobD]

You are a better man than I !

[CDreamer in reply to President2012]

To sleep - I put ear buds in & listen to audiobook. There are specific tracks which help - pink noise.

I had an ablation & on coming round couldn’t hear my heartbeat - I thought I’d died & the nurse leaning over my bed was an angel. You get used to it. It comes back occasionally but mostly now just ringing noise.

[President2012 in reply to CDreamer]

Glad it worked for you. I will try it. Thanks

[PleasantPink]

Maybe ask your EP about adding Ranolazine to the Multaq. I was diagnosed with Paroxsymal AF in 2019 and first started with the Multaq 400 mg twice a day. Within 2 weeks the AF returned and multiple ectopics ( doc said multifocal PAC,PVC,NSVT) added Ranolazine 500 ER twice a day and I had excellent control of all symptoms. In 2021 I started asking about the PIP ( pill in the pocket) approach and my EP is trying that. Another story and different meds. But for your situation , I'd suggest asking about adding the Ranolazine and the response was literally same day. He actually told me in 15-20 mins.of the first dose I would know if it worked for me and he was right. Good Luck !

[President2012 in reply to PleasantPink]

That is very interesting. Never heard of that med. I must look it up. Many thanks.

[CDreamer in reply to President2012]

Use of various meds does vary from country to country. I’ve never heard of it being used in UK for AF..

[President2012 in reply to CDreamer]

I am in Ireland. It seems not to be a available. Apparently it can cause long QT syndrome. I always like your approach in offering suggestions to a fibbers. Well done and thanks

[etheral in reply to CDreamer]

L ooking up. this drug, it is available in the US and Canada and indicated for angina. There is also off label indications for v tach. Interestingly enough, it lists as side effects 5-10% incidence of tinnitus.

[CDreamer in reply to etheral]

It’s also listed on NICE for controlling stable angina. Interesting about the tinnitus - whatever cures often causes and vice versa.

[President2012 in reply to CDreamer]

So true

[President2012 in reply to etheral]

Thanks.

[PleasantPink in reply to etheral]

Yes, it is an off label use in the US, not sure about elsewhere.

[PleasantPink in reply to President2012]

You're welcome. Perhaps you heard of the brand name of ranolazine is Ranexa. ( the generic is cheaper & effective )

[President2012 in reply to PleasantPink]

Yes. That is available in Ireland

[4Pip]

Was on multaq for 8 months. It sedated me and felt constantly breathless lifeless and miserable. Came off it 2 weeks ago and felt a straight jacket was released around my heart. Brain fog and exhaustion gone and losing the weight I gained rapidly. Feel so much better off it. I’d never go back on it it was not living

[President2012 in reply to 4Pip]

Thanks. I know how you felt. I have few choices. I can come if it and go back on Bisop and see if an ablation would work. Or I could live with the bisop and risk having blackouts every time I convert to NSR from AF. I don’t think the last choice is a r runner.

[Nugger in reply to 4Pip]

I only used it for 3 days, felt awfull!

[Ppiman]

I don't think that you should view your reaction to the tinnitus you are suffering as in any way a measure of your personal strength or weakness, even if it's true that over time you might become accustomed to it sufficiently to bear it better. I have tinnitus that I cope with and which I most earnestly hope won't worsen as I always remember once meeting a young family in which the husband's tinnitus had brought him to near breaking point at times. I think you need to see and, if needed, plead with your doctor as he or she should have contacts within the medical field who might be able to help. For example, I think there are special units in some universities where tinnitus is studied and where help might be available (I had Loughborough University in mind, but I am not sure).

Steve

[President2012 in reply to Ppiman]

Thank you for your reply. I was able to manage tinnitus up to now but as the new med is causing my heart to beat stronger that makes the tinnitus thump harder in my ear. This interferes with sleep. I have not slept for a number of nights now. Luckily I am not having to try to go to work. I have an appointment to see a consultant who has an interest in Pulsitile tinnitus. Added to this my Kardia sometimes shows NSR with wide QRS. Other times it’s NSR with PACs. I could manage it all if so could sleep.

[Ppiman in reply to President2012]

Hi again. You’re speaking to someone who gets a good night’s sleep perhaps just once or twice a year, so you have my complete sympathy. Lack of sleep increases general muscle tension and anxiety and that worsens so many other physical problems. I’ve amazed myself at times when later I’ve been able to link physical problems that at the time seemed quite unconnected with tiredness and stress, but which eventually proved to be caused by just that. Insomnia is a very bad thing to have.

My tinnitus doesn’t keep me awake much luckily, it’s my generally overactive mind that does that. That said, I’ve had a month of hearing my blood whooshing through my left ear and that was unpleasant. It’s gone now but I put it down to sinus troubles in the end.

I do hope you get a resolution soon, and manage to get some sleep. If you struggle, perhaps asking for a few zolpidem or zopiclone showing tablets might help? Doctors are reluctant to prescribe these but in your circumstances, they might. They often try to give SSRI drugs instead but, for me, they made the insomnia far worse.

Steve

[President2012 in reply to Ppiman]

Many thanks. My sleep record has not been great for years - getting four or five hours with a six hour sleep every now and then. No however I am not sleeping at all. It’s very hard to function. I do have some zolpidem which I used for a couple of nights but don’t want to become dependent. My GP also gave my diazepam to lower my anxiety but again don’t want to get used to them.

Niall

[Ppiman in reply to President2012]

You and I sound rather alike. I have never become dependent on zolpidem, but I never get more than 2-4 hours sleep from them. I cut the 10mg into four and use just a quarter as I've found that it's not dose dependent in my case for some reason. I have a few diazepam which help with neck tension issues, but I don't really like them!

Steve

[President2012 in reply to Ppiman]

Thanks. I break them in two.I get four to five hours from the 5 mg. Occasionally they don’t work at all. Niall

[Ppiman in reply to President2012]

4-5 hours sleep! Bliss.

Steve

[Slippy17]

Hi I have been on Dronedarone for over a year now. My only real side effects are some skin irritation and constipation. I do get some skips here and there but they never last more than a couple of hours and usually after I've had a few drinks. I do have tinnitus but sporadically and it was present before taking Dronedarone. Hang in there mate!

[President2012 in reply to Slippy17]

Many thanks. Glad it is working for you. Last night I had a lot of skips when I lay down in bed. They went on for thirty minutes and then turned into AF. It only lasted five hours against my usual twelve to twenty four hours. Thanks for your encouragement. Niall