Sound Pharmaceuticals (SPI-5557 & SPI-1005)

Ebselen is known to be pretty safe. It’s the only upcoming drug I’m willing to try immediately upon release. You could order some right now for “research” but I’m not quite brave enough for that.

 

Is Ebselen what is in SPI-1005?

 

Yup.

 

Yeah I would stock up on it if you're from out of the country, assuming it takes a while to get approved in other countries (and it assuming it works well for noxacusis).

 

If this works, would it be something we took everyday or just after setbacks? I'm leaning on the daily side, that way you can prevent acoustic trauma because it's already in your system (as the studies indicate).

 

So would this be a single pill/short course or would you be taking it continuously if it helped tinnitus?

 

Here's some info on the trials.

Pipeline of Sound Pharmaceuticals:

https://soundpharma.com/pipeline/

ClinicalTrials.gov:

https://clinicaltrials.gov/ct2/results?cond=Covid19&intr=Ebselen

Nature article:

https://www.nature.com/articles/s41586-020-2223-y

 

$3950 for about a month's supply if you follow the dosage from the trial. Yikes.

https://medkoo.com/products/4636

 

Not sure how the drug works. Maybe you take it for a month until the inflammation goes away and then pain hyperacusis goes away.

 

On the hyperacusis side of things, any guesses on how it may affect TTTS symptoms or TMJ symptoms? I know there's a lot of chicken or the egg stuff with jaw pain and hearing damage. I'm very tired of the clicking when I turn, the "rolling marbles" sound and the popping. I'm hoping that getting rid of inflammation can at least partially remedy that but I'm going to assume you'd need a lot more to tackle the other stuff?

 

Why would it have an effect on TMJ?

 

Agree, I can't think of a reason it would have an effect on TMJ and related otologic symptoms either way.

 

I doubt it's that simple.

I think noxacusis treatment will have to be multi factorial involving many aspects including: hair cell repair (to dampen ATP leakage from OHCs), anti-inflammatory drugs that effect oxidative stress and vascular permeability (this should help some of that) and the body's own reversal of the Type 2 fiber sensitization, whether that's with (extended) time to normalize purine receptor responses or to down regulate the extra OHC to type 2 fiber connections -- if humans are like rodents in this regard (which I don't think anyone knows yet since that's a recent finding that @serendipity1996 posted about).

Noxacusis frequently does improve so there must be some mechanism of desensitization of type 2 fibers after being sensitized but I don't think there is a set time frame, though it certainly doesn't look like "take a pill for a month and you are healed" because of how much desensitization is involved in recovery. If this helps with noxacusis, I predict there will be a lag between taking the drug and the re-sensitization of the fibers.

 

So question, I remember people talking about synapse drugs helping noxacusis... Where would that fit in? Or has that been made obsolete by the latest mechanisms?

I’m only asking because I feel like I do have synapses lost because I have hidden hearing loss more so than regular hearing loss.

 

Are you sure they didn't mean loudness hyperacusis? People use hyperacusis a lot without clarifying.

I don't know of a mechanism off hand that synapse regeneration should help noxacusis but maybe whoever posted that had a theory...

 

There's been some speculation on here as to whether the synapse drugs could help since in the same ears that saw an increase in type 2 afferent fibers as a result of acoustic trauma, there was a decrease/loss in type 1 afferent fibers. One of the things I was wondering is whether restoring the lost input to the type 1 fibers would then downregulate the type 2s. I'm not sure if these are explicitly linked though or contingent on each other. I actually wish I asked this question in the recent research webinar!

Most people with noxacusis also have loudness hyperacusis and tinnitus too though, (according to Bryan Pollard) so if nothing else a synapse drug could take care of those two (even if it does nothing for noxacusis) since Liberman thinks loudness hyperacusis and tinnitus are potentially synaptopathy issues.

 

If your jaw pain is truly unrelated to TMJ maybe. I would want TMJ fully ruled out by a specialist in that case, though.

 

What I meant was, hearing damage can cause jaw pain, or TMJ-like symptoms. I was asking if that's related to inflammation in any way and therefore could be helped. I assume it relates to the trigeminal nerve or nerves in the jaw but I don't know for sure. That's why I was asking.

 

Of course it won’t be simple. It was just a theory on what might happen when taking the drug.

 

There are two types of jaw pains that seem to exist amongst hyperacusis sufferers:

- a shooting nerve type of pain directly from sound. Like an electrical shock running through the jaw area. This is likely related to the trigeminal nerve. I’ve seen people say they get instant pain through the jaw following noise exposure.

- achy, sore jaw pain, more like when you touch a bruise and it feels tender to the touch or hurts with movement.

I think point #1 would be more indicative of trigeminal pain and point #2 would be indicative of TMJD. I don’t see how hearing damage can lead to TMJD unless you start clenching a lot due to the stress from the condition. If you do indeed have TMJD it can be seen on a 3D X-ray and TMJD can cause ear pain due to its’ proximity to the ear.

 

No, I understood. I was just making sure you ruled out actual TMJ as the cause in your case.

If you have a trigeminal neuralgia, I am not sure this would help but it seems safe enough likely to try.

 

@Shizune just a personal example. I had no jaw pain when my hyperacusis first started a year ago.

I massaged my jaw a few days ago then later when I was eating it crackled loudly. Since then my jaw has been super tender to the touch. I’ve had trigeminal face pain for a while now and that feels more like a stinging/numbness where this feels like an ache or a muscle pain. Almost like the lingering pain you get after a Charlie horse

 

I hope noxacusis sufferers can get some slice of their life back on this drug.

 

@Shizune , it sounds like @Orions Pain's informal decision tree is a good place to start as she has personal experience with this. The reason I was really pushing you to 100% get TMJ ruled out is because many dentists miss cases unless they are specialists and also because cracking and popping of the jaw is a classic TMJ sign and it would be unfortunate not to rule out a potentially currently treatable cofactor.

 

Pain hyperacusis sufferers are like trying to connect the pieces to a jigsaw puzzle. We still don’t know why we are getting pain hyperacusis whether it is inflammation, IHCs, OHCs or synapses but we will find out soon enough with SPI-1005, then FX-322, then OTO-413. We are nearly there to a cure. It has to be one of these three drugs.

If it turns out it’s inflammation that is causing the problem then good for us as SPI-1005 will be the first drug to treat pain hyperacusis but if not it will most likely be FX-322 or OTO-413 that will help us.

 

This tends to be true. There is definitely part of my tinnitus caused by TMJ and the symptoms you described are exactly what happens with me.

It also could be a combination of all three treatments too

 

Hi,

Does SPI-1005 treat inflammation?

 

Yes, read the thread.

 

Yes. Right now it’s in clinical trials for COVID-19. The results should be out in April and, if positive, could be released in late 2021-2022.

 

Is it specific to inflammation in the ear? Would it be taken for a period of time or indefinitely?