Otonomy OTO-313 — Treatment of Tinnitus

#181
ChrisBoyMonkey said:
When I got LASIK they asked if I wanted plugs too. They didn't tell me how they would get them in there and I must said yes since I heard they were helpful.

The way they got them in was exactly that, and the doctor actually messed up in one eye so she kept stabbing around with the needle in there for a little bit until she eventually just pulled it out and tried it again.
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Must have been horrible. I've got cataract surgery next year. Hope to hell I'm not getting any injections in the eye.
 
#184
all to gain said:
I remember my Dad saying that 50 years ago he got a thorn in his eye. He had to have an injection in his eye. Imagine watching a needle coming down towards your eye and then piercing it. Fuck that.
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I've had 3 injections in one eye, these days they don't come at you like that - thankfully :confused:
 
#186
I wanted to update on this. Since getting this shot, my tinnitus has been much worse. I seriously regret getting it. It spread to my other ear just as bad, maybe even worse than my right, and it's louder in both.

I still don't know if I got the real thing or not, but all the worsening started right after I got the shot. In fact I felt I was slowly getting better before it. Not anymore. I don't talk about it much, but I was hurting hard before I got it. Now I'm hurting even worse. Don't try this drug. I'm hoping this is temporary and will report of if it is, but its been a month of only getting worse since.
 
#187
ChrisBoyMonkey said:
I wanted to update on this. Since getting this shot, my tinnitus has been much worse. I seriously regret getting it. It spread to my other ear just as bad, maybe even worse than my right, and it's louder in both.

I still don't know if I got the real thing or not, but all the worsening started right after I got the shot. In fact I felt I was slowly getting better before it. Not anymore. I don't talk about it much, but I was hurting hard before I got it. Now I'm hurting even worse. Don't try this drug. I'm hoping this is temporary and will report of if it is, but its been a month of only getting worse since.
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This is tragic. I am so sorry to have read this. I honestly didn't expect to see a worsening. Sorry if you already said it but did you get both ears injected?
 
#190
JohnAdams said:
This is tragic. I am so sorry to have read this. I honestly didn't expect to see a worsening. Sorry if you already said it but did you get both ears injected?
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Just the right but only about two days after the shot I started getting it on the left too. It's just bad as on the right now, and the right side also louder than before. I now have to keep my wind chimes sounds playing on spotify playing all day. Sleep has been worse too.

I didn't expect it either since they kept telling me they had already tested on a safety group with no worsenings, but I still had a bad feeling about it. I remember the morning of they should've listened to my instincts.
 
#191
ChrisBoyMonkey said:
Just the right but only about two days after the shot I started getting it on the left too. It's just bad as on the right now, and the right side also louder than before. I now have to keep my wind chimes sounds playing on spotify playing all day. Sleep has been worse too.

I didn't expect it either since they kept telling me they had already tested on a safety group with no worsenings, but I still had a bad feeling about it. I remember the morning of they should've listened to my instincts.
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Praying for you man. You've got too good a heart for this to have happened...
 
#192
ChrisBoyMonkey said:
I wanted to update on this. Since getting this shot, my tinnitus has been much worse. I seriously regret getting it. It spread to my other ear just as bad, maybe even worse than my right, and it's louder in both.

I still don't know if I got the real thing or not, but all the worsening started right after I got the shot. In fact I felt I was slowly getting better before it. Not anymore. I don't talk about it much, but I was hurting hard before I got it. Now I'm hurting even worse. Don't try this drug. I'm hoping this is temporary and will report of if it is, but its been a month of only getting worse since.
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Very sorry to hear about this. Can't imagine dealing with that.

Thank you for the update. I don't think I will follow up with my appointment anymore after reading this.
 
#194
ChrisBoyMonkey said:
I wanted to update on this. Since getting this shot, my tinnitus has been much worse. I seriously regret getting it. It spread to my other ear just as bad, maybe even worse than my right, and it's louder in both.

I still don't know if I got the real thing or not, but all the worsening started right after I got the shot. In fact I felt I was slowly getting better before it. Not anymore. I don't talk about it much, but I was hurting hard before I got it. Now I'm hurting even worse. Don't try this drug. I'm hoping this is temporary and will report of if it is, but its been a month of only getting worse since.
Click to expand...
Sorry buddy. Give it time. You very well may have gotten the placebo. I believe our ears are hyper sensitive in these states, and that yours will again calm down with time.
 
#195
ChrisBoyMonkey said:
I wanted to update on this. Since getting this shot, my tinnitus has been much worse. I seriously regret getting it. It spread to my other ear just as bad, maybe even worse than my right, and it's louder in both.

I still don't know if I got the real thing or not, but all the worsening started right after I got the shot. In fact I felt I was slowly getting better before it. Not anymore. I don't talk about it much, but I was hurting hard before I got it. Now I'm hurting even worse. Don't try this drug. I'm hoping this is temporary and will report of if it is, but its been a month of only getting worse since.
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This is tragic!! So sorry to hear this Chris.

When do they tell you if you got the real thing or not? And what did they say about your tinnitus worsening?

If it was simply from being injected in the ear then it really doesn't bode well for other drugs being researched out there. Makes me feel we are way off 5-10 years for a cure or good treatment.
 
#197
So I took a look back at some of the old AM-101 threads. They were trialing kezyline, a similar (but less potent) NMDA antagonist to gacyclidine.

Not only did the trial fail it looks like several people experiencing a worsening of their T. I wonder if Otonomy was aware of this before chasing after another NMDA antagonist.
 
#198
ChrisBoyMonkey said:
Just the right but only about two days after the shot I started getting it on the left too. It's just bad as on the right now, and the right side also louder than before. I now have to keep my wind chimes sounds playing on spotify playing all day. Sleep has been worse too.

I didn't expect it either since they kept telling me they had already tested on a safety group with no worsenings, but I still had a bad feeling about it. I remember the morning of they should've listened to my instincts.
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You're very bad ass for going through this. You have put major skin in the game. Very brave.
 
#199
all to gain said:
This is tragic!! So sorry to hear this Chris.

When do they tell you if you got the real thing or not? And what did they say about your tinnitus worsening?

If it was simply from being injected in the ear then it really doesn't bode well for other drugs being researched out there. Makes me feel we are way off 5-10 years for a cure or good treatment.
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I don't know if they will at all. On Monday I'm going back, and I'm going to try to get it out of them because I need to know. I'm pretty sure I got the real thing and it's poison for us though.

I've got my Lenire appointment next month, so hopefully that will help...
 
#200
ChrisBoyMonkey said:
I don't know if they will at all. On Monday I'm going back, and I'm going to try to get it out of them because I need to know. I'm pretty sure I got the real thing and it's poison for us though.

I've got my Lenire appointment next month, so hopefully that will help...
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Beat it out of them!! You do need to know!! We all need to know!!

Good luck with Lenire. I'm looking to that too... for better or worse!!
 
#201
ChrisBoyMonkey said:
I don't know if they will at all. On Monday I'm going back, and I'm going to try to get it out of them because I need to know. I'm pretty sure I got the real thing and it's poison for us though.

I've got my Lenire appointment next month, so hopefully that will help...
Click to expand...
About a decade ago I was part of a trial for a cholesterol drug. My cholesterol dropped so low that they were required to "unblind" me from the study and tell me what group I was part of (I was part of the new drug + Lipitor group). Strangely I was allowed to stay in the study (I did it mostly because I had high cholesterol at the time and they were paying me ~$100 each time I came into the office). There are rules in place that if you're having certain kinds of reactions they're required to unblind you. I would tell them your reaction and ask about unblinding at your next appointment.
 
#204
ChrisBoyMonkey said:
Not much better than the day before. In fact I was feeling suicidal to some extent earlier to be honest. I'm hoping it'll die down but I don't know.

I'm really hoping Neuromod can help. The good reviews give me some hope. Thanks for asking.
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Dude, go take a bunch of NAC and curcumin. It may help you bounce back faster.
 
#207
ChrisBoyMonkey said:
Not much better than the day before. In fact I was feeling suicidal to some extent earlier to be honest. I'm hoping it'll die down but I don't know.

I'm really hoping Neuromod can help. The good reviews give me some hope. Thanks for asking.
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I'm sorry man. For what it's worth the thought still crosses my mind regularly and I'm 6 months in, going on 7. I truly believe that that fluid injected in there is just exacerbating your sensitive inner ear - making it act up. I believe it'll fade as that dissipates and calms down. Will likely be a few weeks. Hang tough and remember that. Work on self soothing through food, hot bath, busy projects, hikes in nature. Get out of the quiet room and work at finding peace. So much easier said than done but you'll come through.
 
#208
ChrisBoyMonkey said:
Not much better than the day before. In fact I was feeling suicidal to some extent earlier to be honest. I'm hoping it'll die down but I don't know.

I'm really hoping Neuromod can help. The good reviews give me some hope. Thanks for asking.
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When you go for your appointment with Neuromod are you going to disclose that you are on this trial?
 
#209
Rb86 said:
I truly believe that that fluid injected in there is just exacerbating your sensitive inner ear - making it act up.
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I had about 100 injections of various stuff injected into my eardrums and there was never an exacerbation of my symptoms. Only improvements.
 
#210
@ChrisBoyMonkey you were straight up gangster brave for the good of everyone to be part of this trial and I am totally gutted that you're experiencing this worsening. A month is not a long time whatsoever, and I believe you can and will improve naturally. You're super positive on here and you deserved a better outcome, but you'll get there despite this setback.

If you're anywhere near the Bay Area and want to hang, DM me. We can be miserable together.
 

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