Life Ruined? Possibly.

By some misfortune I developed a lung infection called MAC (mycobacterium avium complex) at age 29 - with no risk factors. I've never smoked, don't consume alcohol, ate very healthy, was physically active, and have healthy immune function (according to immunologist testing) and even normal lung function (according to my spirometry testing).

My infection was mild-to-moderate but was said to require a combination of potent antibiotics: azithromycin (500 mg); ethambutol (1200 mg); and rifampin (600 mg) - taken 3x per week (Monday, Wednesday, Friday).

I would like to preface this by saying that I've always HATED loud noises/music and have always protected my hearing regularly due to the fact that I learned in my early teens that loud noises damage hearing, etc. I've never been to concerts, don't own headphones, and rarely listen to music.

Prior to treatment I got a baseline hearing test from an audiologist (at normal frequencies due to the fact that high-frequency testing isn't available) - and all show exceptional hearing. I've had several hearing tests throughout my treatment and the audiologist always claims my hearing is "as good as it gets."

Additionally, before I began treatment with my medications, I put together a supplement stack that I thought might be otoprotective - either preventing or minimizing hearing damage/tinnitus. This included: NAC, magnesium citrate/threonate, taurine, ubiquinol, alpha-lipoic acid, vitamin C, vitamin D3/K2 - with vitamins A & E from foods.

My treatment was going just fine up until early September 2019 when I woke up 3-4 days following an influenza vaccine and developed a faint "wind-like" noise in my left ear (the same arm in which I received the flu shot). The noise would sound like wind blowing for a few seconds, then a brief 1 second break, then another gust, followed by a break, and repeat.

(Keep in mind I've received flu shots in the past with no issues whatsoever - but here I developed this very faint oscillating "wind-type" noise in the same ear as the arm in which I received the shot. However, I used a different manufacturer of azithromycin this same week on Monday - developed the tinnitus on Thursday - so it's possible that this noise was not from the flu shot. Could've been some sort of immune response to the latest influenza vaccine though - or some interaction between the ingredients and my antibiotic regimen).

Even this faint noise caused me to panic and I was unable to sleep. I became suicidal and honestly don't know how I gutted it out for a few months thereafter. I stopped working altogether (previously good job), but decided to live off of savings until I can get my life back in order (if this is even possible IDK).

Several months after the onset of this faint noise, I became somewhat desensitized or "habituated" to it - and although it's bothersome - I somehow got through the day. I kept refreshing this forum's "research news" praying that a miracle cure was on the way soon (e.g. FX-322, Hough's interventions, etc.) - but the reality is: efficacy remains unknown & approval/release won't be anytime soon (assuming safe/effective).

Eventually I decided to just live with the faint ringing, but as of March 2020 I developed a higher pitched ringing type noise in both ears that constantly fluctuates.

It seems as though there's an electrical buzz-type ring, a tambourine-like noise and/or jingle. The noises in my ears are almost never sync'd up - one ear will be doing a high pitched electrical type tone, the other will sound like a tambourine.

I'm somewhat fearful due to the fact that I don't know how much worse this ringing will get.

I have to continue my treatment until May 31, 2020 if my next bronchoscopy (lung analysis) reveals that I'm free of the damn MAC bacteria. That's a total of 18 months on 3 antibiotics, 3x per week.

I may need to continue the antibiotics for 6 more months (and possibly - my biggest fear - add an aminoglycoside, Amikacin)... AHHHHH.

My anxiety level is sky high. Slept 4 hours last night and not sure if I'll be able to sleep well again with the tinnitus and fear that it could get much worse.

I'm currently taking things one day at a time but part of me is hoping that I just die in my sleep every night. I cannot focus on work, I can't really hold a conversation or relationship down, and I'm having difficulty eating or enjoying simple things like reading/watching TV. I also feel as though I'm becoming dumber (less intelligent) by the day.

And to think back to September 2019 before any tinnitus begun - I was in an exceptional mood... about 9 months on my antibiotics and felt extremely optimistic about the treatment/my future.

Anyways, I don't even know if what I wrote is coherent. Apologies for the rambling. I feel like my life will be complete misery until this tinnitus goes away.

I guess I'll attempt to delude myself with optimism that a cure is right around the corner (2025-2030) - as opposed to facing the reality that I may need to wait a long time (2040-2050).

 

This is me to a T. I’m 26 and feel like my life is basically over but giving it a few years as I’m interested in these “treatments”, otherwise I feel like a zombie just getting through each day, barely. I’m sorry you’re having to suffer so much as a side effect of something else life is truly unfair

Nice profile pic btw - surprised that “someone that barely listens to music” made this selection.

 

I am truly sorry you are going through this. I acquired tinnitus by trying to address another non fatal health condition. I took an aminoglycoside and within 3 days developed a nasty and painful high pitched ring. Needless to say it was a big mistake. Just like you i had a hearing test the day before taking the first dose. Hearing was determined excellent. Now hearing is still excellent as tested but I have tinnitus and hyperacusis. I never listened to loud music, been to two outdoor concerts sitting far from stage, never blasted music through headphones my entire life. But after all these preventive measures i take an ototixic med, when other options were available. Now for the past 10 months it’s been a struggle. if you read other post your reaction and feelings are par for the course. I strongly encourage you to find an alternative med to replace the proposed aminoglycoside. Yes, you now have tinnitus but you don’t want to make it worse or go deaf. So, please be careful. I am not going to lie, it sucks and everyday is a challenge. But there are no other options but to keep going and try to get use to the ring. One of the hardest parts for me was trying to get use to waking up to the ring. We have to accept that is going to be there but not to let it dedicate our mood for the day. There will be good and not so good days. Give it times, be patient and be kind to yourself. You are not getting less intelligent. Your mind is telling you that lie. You are just hurt by what’s happen to you. It understandable and completely normal. Hang in there and I encourage you to read some of the success stories on this site. We all have to fight like we’ve never had to before. I wish you well.

 

Wow, sorry about this awful situation. Sounds like you did everything right to try and minimize/prevent the damage from happenning, too. It's unusual for someone to so premptively take the steps you did to protect your hearing. All the more sad that you were still punished with tinnitus regardless.

Maybe in time once you finish the course of your antibiotics it could die down to a manageable level or go away. I really hope it doesn't get worse for you.

You've come to the right place. I refresh the research thread all day, too. It's literally the only place that gives me any hope at all.