Otonomy OTO-313 — Treatment of Tinnitus

I got one steroid injection done in one of my ears and it made my tinnitus WAY worse for a while. I also had ear fullness for a month. It took forever for the fluid to drain out of my system. You’ll be alright, praying for you.

 

The thought of that scares me now. It's become the dominant sound almost everywhere, the only places I don't hear it have to be really loud like a super busy restaurant or food court. At least I don't hear it on the freeway with the windows down and music playing. Without the music I kind of hear it though. The sound of it is just so intense now, so screechy, like a drill scraping on metal or something.. but to top it off I still got ear pain too, that hasn't calmed down at all, throughout the day.

I used to be able to do those things easy back when it was mild. Now, it's just a beast that I'm struggling to tame.

 

Right. I went to Korea to get all kinds of stuff injected into my ears and I felt better about that than trying to enroll in this trial.

 

How long was it worse for? I'm hoping mine will calm down too.

 

If they ask. It shouldn't matter though, since they are selling a treatment, not conducting a trial. By the time of my appointment my trial duration is technically over anyways.

 

Only time I don't hear mine is in the shower. I hear it everywhere else.

 

I just can't handle it well. Mine used to mild, then severe for something that could have been prevented, and now this drug made it even worse. It just feels bad like, like it just keeps getting worse, like it will get to that point and maybe even worse.

I'm really hoping it doesn't. Lately I've been using a really good track on Spotify that suppresses it very well if you'd like to try. Search wind chimes on Spotify. The artist is Tinnitus Institute. My wife just bought these open ear headphones I've been using as de facto maskers in quieter places playing that track. Well I just started it today but it helped for where we were

 

Hang on @ChrisBoyMonkey.

You are one of the most positive people I have seen on Tinnitus Talk. I'm sure Lenire is going to help you. You are also very brave for being part of this trial and trying to help us all.

 

I don’t remember exactly, but it subsided. Literally when I got the injection, I felt my tinnitus IMMEDIATELY spike. I hated myself for getting the injection. The inner ear just got irritated, this is probably what has happened to you.

I’m unsure why it has spread to your other ear, but at the end of the day, I’m pretty sure OTO-313 isn’t something that is injected once and its effects last permanently. I think its effects wear off after some time.

Hang on for Lenire, and believe that it will help you.

 

Hi JohnAdams,

You were brave and had a good experience. Your statement doesn't help Chris, it just gives you props.

Chill.

Tinnitard and Aldo didn't have a "good experience " or said they felt "better" at the same doctor. They were worse for it (in their words).

GlennAZ neutral, or the same.

Your experience in Korea was good but should be seen in context to the other 3 forum members who went there, wouldn't you think?

Your bravery is not forgotten... and you are beating the regeneration drum I am super appreciative of.

Chris, hope you feel better soon... I am sure you will...

 

Nope.

Yeah bro that's why I have been as transparent as I can and haven't recommended for anyone else to follow in my footsteps. I have only advocated that this obscure therapy should be studied further. My main argument is for the usage of turmeric/curcumin and to a degree Tinnitus Mix.

 

@ChrisBoyMonkey, did you find out about whether you received the actual drug in the study? I had been talking to them about the OTO-313. I thought that the Gacyclidine was a safe medicine for injection, so now I am at a loss. My tinnitus is new so I have just finished steroids and it's gone way down in my right ear, with the left ear remaining loud. So I am getting the wait and see from three ENTs. One refused to give me a steroid injection in my noisy ear, said he had had tinnitus in both ears for 20 years...

So I am at the end of my rope (with respect given to those who have been dealing with this for months and years)...

Is the OTO-313 study just too dangerous to consider?

At what point should I begin to seek out nerve stimulation, brain surgery, or other means to stop the noise?

 

I haven't been able to verify but I'm pretty damn sure I did. Next time I go I'm going to beat it out of them. I strongly suggest staying away from OTO-313.

What I do suggest you look into is Nueromod Lenire.

 

@ChrisBoyMonkey,

Would you let me know about your experience with the OTO-313? It's an hour and a half trip to the place to get it done, they told me it had to be so many weeks after I was off steroids, which puts me in January. I am considering getting the steroid injections in January when one of the 3 ENTs I have seen is back off vacation, he's the only one that does them in my area that I am aware of.

Have you had any other injections (e.g. steroids) besides the OTO-313?

Also does anyone else on the board recommend the injections for a new tinnitus sufferer (3 weeks)? My left ear is screaming but my right ear has calmed down over the last week, at times to the point where I feel like I have tinnitus in the left side of my head wrapping to the back and top of head, also when I chew, I get a sound like shaking a change purse in my ears and back of head...

 

What is the cause of your tinnitus? Steroid IT injections are most effective within the first few days to week of SSHL. After about a month not sure they will do much. I wouldn’t get OTO-313 based on Chris’s experience. Especially if I was only 3 weeks in. Your tinnitus could still fade by itself.

 

Don't do OTO-313. It was the only thing I got injected and it made it worse right after.

If anything, sign up for Neuromod Lenire. The wait list just seems to be growing so the sooner the better.

 

F-u-T,

Thanks for your reply

I think it was from a flu vaccine, but I have been told its due to mild to moderate hearing loss in the high frequencies, stress, blood sugar spike, viral, unlucky, and every thing in between. Been to 4 ENTs as of today, and 3 audiologists working off the initial report from 3 weeks ago. I didn't even know I had hearing loss until the tinnitus started...

Started really loud in both ears, now it's faded significantly in my right ear, left with a constant high pitch hissing and then increased/decreased volumes throughout the day.

After reading these forums it looks like everyone that has tinnitus over 2 or 3 weeks is permanent...

Nowhere to turn for help, so I thought the trial might be a shot, but if ChrisBoyMonkey experienced worsening symptoms with the actual med, then that would make participation less than optimal...

So far I have been given steroids and offered hearing aids for 10k with a 3k discount since its Christmas...... I put the hearing aids on and didn't really notice much difference other everything is amplified. The masker was more annoying than the loud hiss in my right ear......so I don't know about the hearing aid thing......

I feel like i am on death row........

 

Your user name is funny because the Wnt pathway is what they are using to regrow haircells. Wnt relief.

 

Felt the same when I first got tinnitus about a year ago. Mine was from acoustic trauma. So one minute I had perfectly good ears and ten minutes later my ears were fuc*#d for life.

I was like you the first month or two. Wanted to try everything that could stop the madness.

All I can say is what you don’t want to hear or think is possible. Give it some time and it will get easier to deal with. My ears ring just as loud as they did a year ago but I am back to a somewhat normal life. Still sucks but I don’t think my life is over anymore.

My best advice:
1. Take it one day at a time. Don’t worry about tomorrow because that is not guaranteed. Don’t futurize your thoughts because that is the fuel anxiety feeds on.
2. Distraction - When it is really bothering you distract yourself. Go for a walk, drive, exercise, play a board game. Something to distract yourself from dwelling on it.
3. Masking with a phone app such as ReSound Relief. The sound of crickets or fire/rain worked good for me.
4. There is certainly hope in our future for things like Lenire, Susan Shore Device, FX-322, etc.
5. CBT also helped me get through my darkest times. (Controversial topic on this website but it helped me deal with the EMOTIONAL side of tinnitus. It doesn’t do Jack Shit for the tinnitus itself. It’s only therapy.)

God Speed.

Fuck - U - Tinnitus

 

6. Try curcumin.

 

Same here!

You're getting great advice here. I've had it since May. I'm gonna tell you to hang in there and don't envision the rest of your life with this, because that's like loading up every problem you're ever going to have, spread out over years, and experiencing it in one day. No one knows what the next day brings--including good things.

Some folks *do* experience much less tinnitus and even its disappearance after years of having it. And there really is some very promising research and clinical trials going on, both for hearing loss and "just" tinnitus. (There's even a currently offered device, Lenire, though its results are mixed at least in this initial stage and it's being rolled out slowly.

I am *not* happy to have tinnitus but I am not as constantly morose about it as I was before. You also should try different maskers and sound therapies, some things work better than others for different folks.

 

Thanks everyone for your replies and advice, I really appreciate the positive comments.

 

Just so you know - the comment "anyone who has had tinnitus over 2-3 weeks is permanent" is thoroughly wrong.

 

My mom had tinnitus for 2 years and it went away forever. Still can’t wrap my head around it but it’s real, and she still never protects her ears. I could have gotten the short end of the gene stick, but I’m only 1 year and 3 months in, so we’ll see.

 

@ChrisBoyMonkey how are things going now? I hope it is getting better for you.

 

How are you doing GoatSheep?
Hope you are on the mend as well.

 

Almost all the fluid behind my eardrum is gone now. So my hearing is back. No improvement in tinnitus. Now I have a clicking sound in my ear like a typewriter but the doctor says it’s a muscle spasm and should eventually go away. Who knows though. My scar looks really good though lol.

 

It's not any better, but at least hasn't kept getting worse. The more I listen to it the more I think what it did was add a new loud ring that is in both ears and the head, drowning out my old right one that was already bad but not as bad as this new one.

Thanks for asking though. I'll update if it calms back down to how it was but given it's been a while now I doubt that'll happen.

 

Did you ever get any answers from the clinic that gave you the shot? I'd be going down there with some dang ol' nunchucks.

 

Don't doubt it... these things for me anyway seem to make their changes in 1-3 month increments, and that's provided you don't subject yourself to more loud noise. I can't drive with the window down anymore it's too loud. But I think you're going to improve, it's just going to take time.