Tinnitus Likely from Gentamicin — My Intro Post

Hello Everyone,

Just thought that after more than two years I should introduce myself. I haven’t done it before because to be quite honest I was in complete denial. I didn’t want to admit I had a very real issue.

As a preface I am of the Christian faith and I know there are many who aren’t and sometimes people of faith are ridiculed because of their beliefs. I don’t ridicule anyone based on what they believe and am here to share my journey as well as learn from anyone anything I can.

I got PT back in July of 2018. I’m not sure what caused it but there are a couple of things that had occurred beforehand. I was on IV antibiotics in Feb 2018 for a resistant UTI of which I still deal with. The antibiotic was gentamicin. That is a long story and it had nasty side effects. One of which I began to get a super clogged right ear. That went away after treatment, but I was left feeling very strange and completely zapped. Took several months to recover.

In July we had returned from the beach and to deal with some of the pain the antibiotic had left me with I took a high dose of vitamin D3. About 3 minutes later I heard a squeal in my right ear and then a very distinctive pulse. Like my heartbeat. It was loud and I thought it would go away with rest etc. went to two doctors, one being an ENT. The ENT declared me completely fine and that I had “beautiful” ears... suggested an allergic reaction. Which may not be too far off. One night while on vacay I had a massive sinus / allergy episode where my head felt like a brick and I couldn’t even lie down. I was completely blocked up. It came out of nowhere and mysteriously vanished the next morning. But the rest of my vacay was great. Had no episodes.

The other doc - a general physician looked in my ears and pressed on my face and declared you have a double ear infection. The visits were 24 hours apart. How could that be? Oh, the ENT gave me prednisone of which I held for a week until my hematologist okayed it.

Here is where my faith comes in, I believe in fasting and prayer and so I did. I went on a fast and I also took the prednisone. I was so scared to take it. But that pulsing in my ear was so awful and by the time I started, it had morphed into other weird sounds but always to the beat of my heart. My ear was clogging etc. I also, before doing prednisone, tried alcohol and vinegar in the ear which seemed to alleviate it for a while and then it didn’t. After my fast, and the seven day course of prednisone I was healed of PT. Thank you Jesus! Because It was absolutely vile. During the course I did get some regular tinnitus. Like the cicadas type sound. It also resolved — I think it was a side effect of prednisone... maybe.

So fast forward to September of the same year. I was doing pretty good. And about the second week after work I would come home and relax with my cell phone lol... I noticed that I would get a ringing in both ears that was very brief. It would happen at the same time each evening. I then started to research tinnitus more thoroughly — because years ago I had it and it completely resolved. I had a strange type where you hear music or muffled conversation like noise — I actually had that kind twice and both times after a long while it resolved. It was then that I started my research to figure out what was going on. Probably due to something I was prescribed.

So in my research in 2018 I of course care across the suggestion of natural supps and essential oils etc. I ordered some just in case the intermittent ringing was thinking of hanging out. Fast forward to Oct 1, 2018: I had to have a bone marrow biopsy and after the biopsy, I stood to walk and nearly dropped to the floor. My balance was completely off. I was super dizzy for about an hour. Before day the next morning I awoke for the potty and I had a high pitched tone in both ears. And that’s where it began. The tone died down and then came the crickets or cicadas or whatever it is. Not really sure it’s exactly that sound but I think probably several people hear that on a lower level and never think anything of it. It’s like the sound you hear when everything is completely quiet... not sure I’m making sense here but anyway, it was overwhelming. It was like it surrounded my entire person and I was so depressed. I cried often. I researched until the wee hours. I tried the essential oils of which I think a couple helped. But it was there. I was in such denial. I kept thinking this could not be my life. I had things to do. I had kids to raise. I had church services to lead I had a job to do. The early days were awful I admit that. I then began to get layered noises... I mean I was in despair. I was dealing with this crazy UTI and avoiding prescriptions because I was scared it would make the tinnitus worse. I’ve been doing natural remedies which kept it pretty clear for about 18 months with flares here and there but in October of 2019 I had no choice. Had to go on Cefdinir. I was so scared it would make me spike. It didn’t. Had to do three rounds. And still, today it is trying to flare so last week I thought I would try a low dose Trimethoprim. Baaaaaad decision. Had an allergic reaction and I think it spiked me some, but I had also tried a natural several days before that may have began a spike, but now the cicadas are back...

So in the middle of all of this and a bout with the flu of which I recovered - thank God. It was the worst. Tinnitus spiked like crazy, my daughter was on the sofa early one morning saying she heard buzzing in her ear. It absolutely could not be happening... she is autistic and so it’s hard sometimes for her to communicate such things. She’s 24 and very, very sweet. Very naive. But loves music and she stands in front of a loud speaker at her favorite hangout, to which I just learned and was horrified. She wears headphones everywhere. Everywhere. She kept describing the noise, and I finally came to the realization it was tinnitus. She couldn’t sleep at night . Said it got worse at night. Said it was an 11 out of 10. In the day time she was between a 1 - 3/10. So to the doctors we went. General physician... no good. Sends us to the ENT and audiologist. They did the test where they checker ear drum and then the regular hearing tests. She did great. While we were waiting on the doc to come in and read the test, I asked her as I had been doing several times , what her level was. She said, “Oh I don’t hear anything.” And went back to her phone. I said, “what do you mean? Are you at a zero?” Yes she replies. I was stunned. I began to praise God right there because it was a prayer answered. Like I had prayed so hard for her to not be plagued by what plagued me. She is way too innocent and I have waaay too many issues to stress over her having tinnitus. But the doc comes in and I told her that she said that once the test for her ear drum was performed the buzzing stopped. The doc shrugged. Like it was no big deal— she didn’t believe it. She probably thought as I had that possibly it was just low or it was changing to intermittent. She gave us prednisone. It has been five days and my daughter has had no more buzzing at all at any level. And I give glory to God for that. So there is a success story. Some people may not count it as that, but I’m happy that now I don’t have to worry about her being tormented.

So back to me— I don’t know if I have ETD because my right ear pops all the time and I do find some relief. Some of the sounds die down or completely go away. But I always have a couple that hang around. It moved to my left ear which had not been so problematic, but now, sometimes it can be more annoying than my right ear. It doesn’t have as many noises, but still bothersome.

I want to take antibiotics but don’t want to endure another spike or an added sound.

As of now, I’m taking L-methionine and NAC. I’m wondering if the methionine has contributed to my spike because it seems to get louder after I take it. Could be coincidence, but I need it for urine acidification. I tried melatonin last night. Only .5mg. It seemed to do something. Not sure I can articulate it, but it was a positive effect.

Sorry for the long post, but that’s what happens after two years of scoping this page.

 

Gentamicin killed your ears.

 

God bless you and your daughter @Tre92. It's amazing how God answer our prayers.

Gentamicin is a type of aminoglycoside, which is known be ototoxic. I hope and pray that your tinnitus would gradually get better in time, in Jesus' name.

Warm regards,
Albert

 

Her ears aren't killed. Just some mild tinnitus possibly due to very slight injury to hair cells.
Very lucky. Could have been much worse. Gentamicin is nasty stuff used as last resort.
Avoid ototoxic antibiotics in the future, damage is cumulative.

 

Well said!!!

 

A good starting point is understanding that God doesn't give or take away tinnitus, that's an absurd thing to think in the 21st century.

 

Everyone is entitled to their own belief system. @AlbertJ I commend you for not being embarrassed to express your belief. I, too, thank God for answering her prayers. People need to feel a sense of hope, which for many equates to faith. God Bless you DanielJ.

 

Hello @Christopher805,

Thank you very much for your empathy. We really need it in a world full of uncertainties. I am in a bad place right now because I have been experiencing myoclonus (severe muscle jerks and twitching) when I am about to sleep - and I could not underscore enough how it is now affecting me. But I am still hopeful that God is here in our midst and I can depend on Him.

God bless you more.


Warm regards,
Albert