Tinnitus and hearing loss from azithromycin

Posted by kathyhg @kathyhg, May 24, 2020

I recall someone on this forum talking about ototoxicity from meds and dealing with hearing loss and tinnitus as well as supplements that helped.

I can’t find that thread and I wonder if anyone has suggestions for anything that has helped with the tinnitus. My hearing loss is so minor that I’m not looking for hearing aides but the ti minus is relentless.

Thanks!

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@healthybon

I have been on Azithromycin and Ethambutol for a month. I have developed ringing in my ears ( very upsetting); and my cheeks get bright red. I let Dr Swenson know via portal and will see what he says.
It scares me….It’s bad enough having Mac, to have to deal with this complexity now; especially because of the length of time needed to be on the antibiotics. Catch 22…..the meds that could eradicate the Mac could be disagreeing with me.
Please , anyone , share your experience on this if possible. What do we do if we can not handle the antibiotic side effects? Lousy spot to be in.

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@healthybon I got tinnitus from big doses of Azythromycin. I am wondering if you may be allergic because your face is turning red. Definitely discuss this with your doctor.

I don't have MAC. I was being treated with a higher dose than normal of Azythromycin in combination with Doxycyclin, and after about 2 weeks, I developed tinnitus, then sharp ear pain, and then I lost my hearing completely first in one ear and then the other temporarily. This lasted a few hours in a single day. That is when I stopped taking it, but the damage was done and I have tinnitus. I did call the doctor when the ear pain started and he told me to keep taking the medication and let him know if it gets worse. I wish I had been more persistent about questioning his recommendation. I have gotten used to it and it's not terrible, I can still hear well. It does get worse with allergies because of inflammation, so in my mind, it helps to think of this cause as partly being caused by allergies. Dwelling on it will just cause stress because it is not something I can control and I am vigilant about protecting my hearing now and if an antibiotic is doing this, there is a discussion about it. Many antibiotics are ototoxic and you can look that up online. Do talk to the doctor. If your read the leaflet in a dose pack of Azythromycin, the risk of hearing loss and tinnitus is listed there. Of course if you need an antibiotic to treat an infection, then you need an antibiotic. Sometimes, there are others that may be able to be substituted that could be better choices in your situation.

You may also ask what you can do to help detox from the effect of the antibiotic and see what the doctor says, if that could help you manage while you are taking the drugs for an extended period of time.

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@dorma

My doctor told me many years ago to get a sound machine to leave on at night. I have had one for many years. You get to choose the sound you like best. My tinnitus gets really loud at times, but I'm so used to it that most days I hardly notice, until it gets extra loud. I'm lucky in that mine sounds more like a swarm of locust than ringing; so much better than the ringing, which I rarely get.

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We put an air purifier in the bedroom this year. I love the sound it makes, it blocks that stupid oxygen machine as well.

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@healthybon

Irene…do you think I should try to deal with it, or stop the azithromycin? It’s damned if you do and damned if you don’t. My hope of getting rid of the Mac is to use the azith for at least a year. I hate being in this spot.

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I'll share my experience just to give you some other ideas. I can't remember if you're taking the meds daily or three times a week at this point.
I already had tinnitus when I began my first round of taking Azithro, Ethambutol, and Rifampin daily. On a regular hearing test after about 6 months of antibiotics, I showed moderate hearing loss. My doc stopped the Azithromycin and substituted Ciprofloxacin for the next six months. Then I was off antibiotics for a year or two and had an exacerbation and positive cultures. I went to NJH. Because of the previous experience with hearing loss on azithromycin, they decided to try clarithromycin instead, and just 3 times a week. I've been on it now for almost a year without any further hearing loss. I even tolerated bumping it up to daily for several months when that was needed.
So, I suggest talking it over with your doctors. There may be a reasonable substitute, or maybe your schedule can be changed, without having to give up treating the infection all together.
Wishing you the best!

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Hi Irene…. thank you for your response… I am taking the azithromycin three times a week. I advised Dr Swenson about what’s going on so I guess I’ll hear back from him this week.

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@sueinmn

Bon, I think you should talk to your doc before stopping the meds. I can't remember if your MAC has cavities? That makes it trickier to treat successfully.
What airway clearance are you using? Maybe you can convince the doc that you will be really, really faithful doing it for 6 months and then have him retest sputum and do another CT on your lungs? Some people hare have been successful in reducing MAC levels and healing lungs, but it is an every day 2-3 times a day therapy - so it can be time consuming.

Maybe worth a try?
Sue

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Hi Sue I have been using the Aerobika attached to the xl cups two times a day now for months without fail with 7% saline. I’m concerned about this ear ringing… It’s upsetting me. My cheeks have been getting red especially on the days that I take the azithromycin which is three times a week… I don’t know what to think. When he told me he wanted me to take the ethambutol and Azithromycin. Since I do not have cavities I am at a point where I can get away taking the two and maybe save myself some problems in the future. I’ve never had to notice so I can’t help but think that it’s from the medicine. I’m scared to continue it and I’m scared not to

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I wrote about my ototoxicity and tinnitus a while back. We had discovered that the azythro was the trouble but the tinnitus came from something else. I have been off all the drugs since last November and my last CT scan was unchanged and good. Do I still have MAC? Maybe. But I am done with taking the drugs. My choice, for now.

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@rstel7272

We put an air purifier in the bedroom this year. I love the sound it makes, it blocks that stupid oxygen machine as well.

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Rick, I wish my air purifier was louder than my tinnitus, but even on high it doesn't cut it! I am experimenting with a number of night sounds to try to make it less noticeable.
Sue

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