Suicidal

[dan]

I talked to one of the researchers at Autifony and she believes the drug works but was not specific enough to the ion channels needed.

...they proved it worked great on mice though. That's why we all here on Tinnitus Talk were so excited!

 

[weab00]

I talked to one of the researchers at Autifony and she believes the drug works but was not specific enough to the ion channels needed. In other words, they ran into the Trobalt problem but instead of being dangerous, it just wasn't as effective as they needed it to be. They haven't given up on this idea and are reformulating to "get a better drug for this" in her words.

Your landing on the moon analogy is how I see it, too.

After hearing about Trobalt causing visual snow syndrome in so many people, I'd be paranoid to try any of these epilepsy meds (XEN-496, Autifony, reworked Trobalt, etc.) especially since I already have degenerating visual snow syndrome.

 

[dan]

10/10 loudness volume or worse.

Count me in.

 

[dan]

My bedroom is registering 29-30 dB at night... no sound machine, my head is the sound machine.

 

[Michael01]

I think when FX-332 and SPI-1005 are released, as from my understanding those are the two closest to being released, it will be the light in the dark we all have been hoping for.

 

[dan]

I think when FX-332 and SPI-1005 are released, as from my understanding those are the two closest to being released, it will be the light in the dark we all have been hoping for.

SPI-1005... Is that like Trobalt? @FGG?

 

[FGG]

SPI-1005... Is that like Trobalt? @FGG?

No. It is nothing like Trobolt. I'm just going to re-paste what I wrote in the SPI-1005 thread:

SPI-1005 is ebselen, a drug that can be given orally that has anti-inflammatory, vascular effects (through actions on vascular calcium channels) and effects on glutamate induced neuro-hyperexcitability. It's a glutathione peroxidase inducer as well and has redox effects on receptors like the NMDA receptor.

The neuroprotective agent ebselen modifies NMDA receptor function via the redox modulatory site

 

[GoatSheep]

anti-inflammatory

If your tinnitus and other ear issues seem to have a major inflammatory component, what would be your recommendations for trying to treat it? Like cumulative and synergistic anti-inflammatory approach whether medical or self-care related.

 

[FGG]

If your tinnitus and other ear issues seem to have a major inflammatory component, what would be your recommendations for trying to treat it? Like cumulative and synergistic anti-inflammatory approach whether medical or self-care related.

Yes but it's not as easy as it sounds. Oral steroids have very little penetrance even at high doses and IT steroids apparently have a polarity issue that make them highly variable in effectiveness (Otonomy is working on this with their Otividex drug in phase 3 for Meniere's).

Some people have improvement with anti-inflammatory diets and supplements but I think for a lot of us here we need more than that. Antioxidants and an anti-inflammatory diet are definitely worth a try.

Especially acutely, I would try steroids too. Beyond that we are looking at drugs that haven't been released yet.

Both the Hough Ear Institute Pill and Ebselen (Sound Pharmaceuticals' drug) are technically available if you have the money (the latter is much cheaper than the former) to pay a research lab to make it and are willing to be a guinea pig.

 

[weab00]

Yes but it's not as easy as it sounds. Oral steroids have very little penetrance even at high doses and IT steroids apparently have a polarity issue that make them highly variable in effectiveness (Otonomy is working on this with their Otividex drug in phase 3 for Meniere's).

Some people have improvement with anti-inflammatory diets and supplements but I think for a lot of us here we need more than that. Antioxidants and an anti-inflammatory diet are definitely worth a try.

Especially acutely, I would try steroids too. Beyond that we are looking at drugs that haven't been released yet.

Both the Hough Ear Institute Pill and Ebselen (Sound Pharmaceuticals' drug) are technically available if you have the money (the latter is much cheaper than the former) to pay a research lab to make it and are willing to be a guinea pig.

Hopefully SPI-1005 can help subside hyperacusis related inflammation. No inflammation = no pain, right?

 

[Zugzug]

No inflammation = no pain, right?

Sadly, I don't think it's that simple. It is definitely possible to have inflammation and not have type II afferents be affected. It's also possible to have damaged type II afferents without any current inflammation.

For the sake of noxacusis sufferers, I hope it helps -- even a little is better than nothing.

 

[weab00]

Sadly, I don't think it's that simple. It is definitely possible to have inflammation and not have type II afferents be affected. It's also possible to have damaged type II afferents without any current inflammation.

For the sake of noxacusis sufferers, I hope it helps -- even a little is better than nothing.

Ah I see. Well that would truly suck if it were the case, since I wouldn't know how to cope for another 3-5 years until FX-322. I thought the general sense was that it could make noticeable improvements in quality of life for noxacusis sufferers.

Not that I'm expecting a cure or anything since the underlying cochlear damage remains, just something to make daily living possible without intense pain.

 

[Zugzug]

Ah I see. Well that would truly suck if it were the case, since I wouldn't know how to cope for another 3-5 years until FX-322. I thought the general sense was that it could make noticeable improvements in quality of life for noxacusis sufferers.

Not that I'm expecting a cure or anything since the underlying cochlear damage remains, just something to make daily living possible without intense pain.

Honestly, I don't know enough. I was mostly commenting on the fact that I doubt SPI-1005 will do anything other than take take the edge off.

I think where SPI-1005 has the potential to shine is with regards to setbacks. It could reduce the intensity of them, and ultimately, speed the healing along.

 

[dan]

Honestly, I don't know enough. I was mostly commenting on the fact that I doubt SPI-1005 will do anything other than take take the edge off.

I think where SPI-1005 has the potential to shine is with regards to setbacks. It could reduce the intensity of them, and ultimately, speed the healing along.

Yeah, it would be more like a more effective NAC pill, no more, and even still probably only for a certain sub group of tinnitus.
It is not going to cure tinnitus, period.

 

[dan]

No. It is nothing like Trobolt. I'm just going to re-paste what I wrote in the SPI-1005 thread:

SPI-1005 is ebselen, a drug that can be given orally that has anti-inflammatory, vascular effects (through actions on vascular calcium channels) and effects on glutamate induced neuro-hyperexcitability. It's a glutathione peroxidase inducer as well and has redox effects on receptors like the NMDA receptor.

The neuroprotective agent ebselen modifies NMDA receptor function via the redox modulatory site

Yeah thanks for that. No, not a cure for tinnitus... maybe peripheral neuropathic pain relief or something. Tinnitus is much more complex to be cured by an NMDA receptor modifier, it has been tried many times without success.

 

[FGG]

Yeah thanks for that. No, not a cure for tinnitus... maybe peripheral neuropathic pain relief or something. Tinnitus is much more complex to be cured by an NMDA receptor modifier, it has been tried many times without success.

Its glutamate effects also include inhibiting glutamate related neuroexcitability separate from the NDMA receptor.

It actually reduced tinnitus in phase 2 for (chronic) Meniere's.

 

[dan]

Its glutamate effects also include inhibiting glutamate related neuroexcitability separate from the NDMA receptor.

Are you saying tinnitus sufferers have constant 24/7 glutamate related neuroexcitability?

 

[weab00]

Yeah, it would be more like a more effective NAC pill, no more, and even still probably only for a certain sub group of tinnitus.
It is not going to cure tinnitus, period.

I don't think the general expectation is that it will do anything for tinnitus, more so that it will help the inflammation side of hyperacusis.

 

[FGG]

Are you saying tinnitus sufferers have constant 24/7 glutamate related neuroexcitability?

Not all sufferers, no, but excess glutamate causes things like ribbon synapse swelling:

Current Concepts in Cochlear Ribbon Synapse Formation

And can be directly toxic to hair cells:

Excessive activation of ionotropic glutamate receptors induces apoptotic hair-cell death independent of afferent and efferent innervation

There are also certain conditions (apart from Meniere's) where neuroinflammation/ neuroexcitability is not that uncommon. For instance, with certain chronic viruses.

The bad part, though, is that severe sufferers who have "uncoping stress" probably also do have more chronic glutamic overstimulation imo since the normal homeostasis systemically becomes dysregulated (see image below and included reference photo). I have yet to see this measured specifically in the cochlea but I bet it applies there too which could be one reason why it takes severe sufferers so much longer to recover if they do.

I'm happy to keep talking about this but we should probably move it to the SPI-1005 thread...

 

[Christiaan]

Honestly, this so much. I didn't do much, necessarily. I'd travel occasionally (usually once every year) and only for the past 4 years or so. I'd go to an occasional gig (2 a year on average) and see an occasional movie. Mundane things, all with hearing protection too. Usually I'd just be at home writing, gaming, watching movies, cooking or doing something creative.

It was only last year that I started being more outgoing etc, and it was immediately taken from me. Being in my early 20s that just sucks a lot, although you have my deepest condolences. I don't have hyperacusis the way you do, just exhausting reactive tinnitus.

@Christiaan groetjes terug! And thanks so much. I really hope it'll bring relief at least. If I could go to one stable tone I'd be happy. Also, should we get cured and hang on long enough, let's have a VR Young the Giant gig

Ey @ASilverLight. Sorry for responding so late, I didn't get an alert of your post. I hope you can still do something like cooking to get the T-monster of your mind.

It would be great to go to another concert YtG in VR. I will hold you to that

 

[dan]

@FGG would you have any idea if wisdom, teeth upper or lower (or both), are tied in with the nerves leading to the inner ear?

 

[weab00]

@FGG would you have any idea if wisdom, teeth upper or lower (or both), are tied in with the nerves leading to the inner ear?

@Greg Sacramento

 

[FGG]

@FGG would you have any idea if wisdom, teeth upper or lower (or both), are tied in with the nerves leading to the inner ear?

Hmm...that's not something I have ever looked into specifically. I could try to find out but i agree with @weab00 that it seems like a @Greg Sacramento's question.

 

[dan]

How can 100 dB car honk not give you a permanent spike but a tiny but uncomfortable sound on a laptop can drive tinnitus to HELL for days now with no end in sight... wtf?

 

[Gabriel5050]

Why does my tinnitus still keep getting worse even though I'm staying at home?

I pray everyday that it at least doesn't get worse if it won't go away. It's been my only wish in life for more than a year. We all here just want to be normal...

 

[weab00]

Why does my tinnitus still keep getting worse even though I'm staying at home?

I pray everyday that it at least doesn't get worse if it won't go away. It's been my only wish in life for more than a year. We all here just want to be normal...

Because this is clown world.

 

[Greg Sacramento]

would you have any idea if wisdom, teeth upper or lower (or both), are tied in with the nerves leading to the inner ear?

Wisdom teeth pain or dental infection can signal ear nerves, otherwise there's no tie-in. With TMJ, muscles of mastication need to be inflamed with association to TMJ joint/teeth to cause ear pain.

 

[dan]

Wisdom teeth pain or dental infection can signal ear nerves

How can wisdom tooth pain signal ears if there's no tie in? Also do you mean wisdom tooth pain as in when they are growing?

 

[Pitseleh]

Why does my tinnitus still keep getting worse even though I'm staying at home?

Same here, worse and worse. Can't put my hands on whatever's causing it.

 

[Chinmoku]

Same here, worse and worse. Can't put my hands on whatever's causing it.

Same here, spoken to many specialists, no one has a clue. By exclusion the only thing I can think of is medication, I'm obsessed with this story (should get off benzos but it seems impossible). There is no way to be sure though, it could be something else.