Sound Pharmaceuticals (SPI-5557 & SPI-1005)

I am at the end of my rope but because I'm unsure of the mechanism of my tinnitus vis-a-vis this drug's effects, it would be a shot in the dark.

@paul mclean - potentially another one to have synthesized.

 

I truly hate that diagnostics are so lacking that it's usually just a "shot in the dark" as to what's wrong with our individual cochleas.

If you end up trying this, through getting it synthesized, please start with a really low dose and do as much of your own research as you can.

 

I doubt I could get it synthesized but then again 3 months ago I doubted I'd be fighting for my life right now. I do have acute noise-induced tinnitus so in theory this seems like it could be helpful, but I guess if the issue is structural damage rather than inflammatory, it wouldn't do anything. The fact that many people have unchanging, noise-induced tinnitus for decades leads me to believe they do have damage and haven't simply reached a new set point regarding high chronic inflammation, but I'm just some dude, my opinion is worth nothing honestly...

It's more plausible to me this could help with hyperacusis.

 

This has probably been answered or at least would have been worked out by now but, for the facial pain side of noxacusis is there any effect on getting an intratympanic steroid injection?

I'm not talking about it needing to diffuse to the inner ear, I'm talking about it staying in the middle ear where it could be better placed for the possible mid ear inflammation affecting the trigeminal nerve, tensor tympani muscle etc.

Apologies, slightly off topic.

 

Not something you would go see a doctor about?

 

I was just wondering if there was any particular view on it. I think, but not 100% sure, I've heard of people getting intratympanic steroid injections before for noxacusis in general, but it could have been for tinnitus and didn't do a lot for it from what I recall. I wonder if anyone could say they've tried it specifically for the facial pain symptoms. I'm just wondering that's all, and I'm sure we'd know by now if it could alleviate these symptoms. I would try it myself, but not yet, I'm happy to wait for other things for now.

Where I'm going with all this, is that if this has been tried and didn't work, unless there's some good reason why locally administered corticosteroids wouldn't do much for trigeminal nerve and facial muscle pain, it could give another indication that ongoing cochlea (as opposed to middle ear) damage and inflammation might be directly responsible for the ongoing middle ear symptoms.

Edit - I know also muscle relaxants like benzos have a degree of success with this pain, what if they are battling with the ongoing effects of cochlea inflammation.

 

Does your facial nerve and trigeminal pain only occur with sound?

 

See I don’t think that there would be any problem with exploring this. However I do wonder whether an inflamed cochlear actually also contributes to the pain? Therefore I would be very interested in seeing the benefits of this treatment on this type of pain. Pray that this will get released soon.

 

It's a delayed effect pain after a setback which is triggered by sound.

Yes I agree, I admit I'm really pushing the theories with this now. After all I've read though there are 2 minutely theoretical ways I can see that the cochlear inflammation could possibly do this.

1) There are apparently trigeminal nerve endings in the cochlea (that innervate the cochlea and not to be confused with the auditory nerve). If an acoustic shock sensitized the trigeminal nerve with mid ear inflammation that did calm down eventually, could the inflamed cochlea trigger the repeat facial pain via setbacks using the cochlea nerve endings as the start point before affecting the whole sensitized nerve area.

2) This is just something I'm throwing out there. We know that drugs can diffuse from the mid ear to the cochlea through the round window. Its been proposed that ATP can do this as well. Is it conceivable that it could happen the other way around? Could ATP diffuse to the mid ear from the cochlea? I have tried looking for anything to either suggest it could or couldn't but with no luck.

Agree though, pray this gets released soon.

 

I just hope any of the upcoming treatments also work for reactive/fluctuating tinnitus... I agree that it's likely some sort of hyperacusis is at play. Never get any pain though, nor does regular noise sound too loud.

 

I think all bases will be covered with inflammation, synapses, and hair cells.

 

You need brain too just in case... e.g. Retigabine reformulation.

 

Speaking anecdotally, I tend to think there must be some connection between the trigeminal nerve and the cochlea. In my own experience with sound-related pain. I first experience a very localized ache directly behind my "bad ear" where my cochlea is located. Soon after, I experience the delayed pain that you have described of pain/burning/itching radiating in the middle ear, jaw, etc.

This personal experience leads me to believe that the pain/inflammation starts in the cochlea, and works its way out into the face/head through the trigeminal nerve.

I have also noticed the "healing" happening in reverse. Where face/jaw pain goes away first, then fades to ear fullness, then back to just mild reactivity in the a localized area behind the ear (presumably where the cochlea is located).

 

What's Retigabine for? And I'm pretty sure that treatment is not coming before 2030 so I'm trying to look at what will soon be available to us.

 

The other name for Trobalt - I think a reformulated version, not Thanos’, is already in clinical trials for another use, meaning it could be prescribed off label for tinnitus. Hopefully we won’t need it though.

 

Yeah, that’s XEN-496, it is starting phase 3 this year. So that’ll be exciting. @weab00

 

In one of the conference summaries from Hyperacusis Research, it was stated that there are projections from the trigeminal ganglion to the cochlea and blood vessels, so this wouldn't at all surprise me.

 

I have had also stiff/tense ear muscles. Since June I started wearing hearing protection as often as I could. There was/is a lot of muscle twitching under the muffs/plugs. Even my jaw sometimes contracts randomly when wearing hearing protection. But the ear muscles have become a lot more loose since 4 months ago and my tinnitus has improved.

I would also liked to know if this tense ear muscles is due to middle er inflammation. I have more the feeling that something is broken in our inner ear that tells the middle ear muscles to contract already at noise levels that are actually not harmful and we need a lot more silence that the inner ear tells the ear muscles: Hey buddy, you can relax now.

 

Could the trigeminal pain/jaw pain/ear pain you're describing be triggered by TTTS? It's known to be triggered by sound and does cause all of those muscles to tighten and fluctuate which does cause inflammation and aggravates the trigeminal nerve.

 

@Diesel - speaking from my own experience, I noticed that when my facial symptoms started to improve, my head and ears felt like they were 'clearing' - this clearing feeling was accompanied by significant reduction in my facial/trigeminal symptoms.

 

I notice that when I start to get better the sound distortions clear up. Then I push myself too far and all the acute symptoms come back.

 

Also, cranial nerve VIII regeneration, which I believe is the culprit for my problems.

 

Is there any progress on research?

 

What’s the cranial nerve's relation? Shit, we’re gonna need like 10 treatments.

 

Demyelination.

 

So we will need this in addition to inflammatory treatments, hair cells, synapses, and channel blockers?

 

I believe @Zugzug has an autoimmune disorder he thinks is causing his tinnitus and hyperacusis. So it would be for scenarios like that.

 

I believe Rinri Therapeutics and a couple of other companies are working on remyelination and nerve regeneration.

 

Demyelination disorders are pretty uncommon. Things like MS and GBS cause them. If you had a demyelination disorder, you would have pretty widespread neurologic issues generally.

 

And actually Frequency Therapeutics as well (for MS at least).