Medical Advancements

[serendipity1996]

As far as I know, there aren't any current drugs available that act on these channels.

@serendipity1996 would be another person to ask.

There have been companies (Biogen for one) that have tried but pulled out because the drugs weren't specific enough and there was activity at other related ion channels (the Trobalt problem, basically).

You can still get a lab to make some of these compounds but I really wouldn't go that route, personally, as there was obviously reasons to abandon the drug (it's also less effective when the drug is less selective, too, in addition to more side effects).

This company has a different approach though:

https://navegatx.com/en

They are using epigenetics to switch on/off the receptor and it has a lot more specificity. Maybe you could contact them and ask about trials (I think it would be too early for compassionate use, I think you might have to have done a Phase 1 first).

Here is their recently published paper:
https://stm.sciencemag.org/content/13/584/eaay9056

I wouldn't say my noxacusis is extreme. The pain is persistent but more moderate but one thing that does help me is lots of liquid Magnesium chloride (the oral formulation, not the topical).

If I recall correctly (could be thinking of someone else), you were weaning off of Benzos. Make sure you get a specialist to help with that, if so (i.e. someone familiar with the Ashton protocol). People tend to get better otologic symptoms once that nightmare is better.

My reply here is a bit belated but yes you're right - all the Nav 1.7 drugs are in pre-clinical development - I think Navega intends to start clinical trials in a year or two, however, which could expand the scope for compassionate use etc.

From what I have read, lack of specificity was one of the initial hurdles and there's definitely been progress on this but I think Xenon and Navega are companies to keep an eye on.

 

[grate_biff]

Is this available OTC in your country:

https://en.wikipedia.org/wiki/Ambroxol

They are starting to test it for Fibromyalgia (which I think has some definite parallels with noxacusis) and other chronic pain and it reportedly works better than Gabapentin.

Seems overall safe short term (and has effects on a similar channel to Nav1.7, namely, Nav1.8) but warning there have been zero long term studies that I can find.

This is total Guinea Pig stuff but I like to post any possible lead with that caveat.

Also tagging @serendipity1996, @Aaron91 and @100Hz.

Side note, it does seem to have some intracellular calcium releasing effects and there was some talk recently about calcium channels and noxacusis but I am not sure if this would have an effect or not. My gut tells me it would not since calcium channel blockers help with Fibromyalgia pain apparently but this reportedly helps more.

Very interesting. Here in Norway they are testing it for dementia. Especially on the type of dementia Robin Williams took his life over.

The pharmacy world is crazy hah... A med to dissolve mucus is suddenly now trialed for fibromyalgia and dementia. So why not noxacusis?

I'll have to have a long chat with my doctor.

You told me yesterday about Sound Pharmaceuticals. There was a guy on Facebook that had his doctor send an inquiry of compassionate use. Very interesting to hear their reply.

Thank you @FGG and your investigative mind.

 

[FGG]

You told me yesterday about Sound Pharmaceuticals. There was a guy on Facebook that had his doctor send an inquiry of compassionate use. Very interesting to hear their reply.

Please follow up and let us know what Sound Pharmaceuticals says to them. I think a lot of people on this site would be very interested (myself included)...

 

[grate_biff]

Please follow up and let us know what Sound Pharmaceuticals says to them. I think a lot of people on this site would be very interested (myself included)...

I told him to come on here and tell us on the SPI-1005 thread

If not, I will.
He thought it could take a while though.

 

[Lucifer]

Anti–USAG-1 therapy for tooth regeneration through enhanced BMP signaling

 

[Sevv]

Breakthrough neurotechnology for treating paralysis

A bit of an older thing, but I really like the man's smile. This is how we will smile once our problems are fixed.

 

[grate_biff]

@FGG, have you tried Ambroxol yet?

 

[FGG]

@FGG, have you tried Ambroxol yet?

I actually just got it today. I'm going to try 4x daily antivirals first (posted my reasoning for this in the hyperacusis section) for a few weeks first though, so I'm not throwing too many variables at it.

 

[GBB]

I was about to ask if this med working on NaV1.7 could possibly be given on a "compassionate use" basis. It seems so promising, to me, to treat noxacusis.

From Wikipedia:

Nav1.7 is a sodium ion channel that in humans is encoded by the SCN9A gene. It is usually expressed at high levels in two types of neurons: the nociceptive (pain) neurons at dorsal root ganglion (DRG) and trigeminal ganglion and sympathetic ganglion neurons, which are part of the autonomic (involuntary) nervous system.​

But I see now that this drug is not even tested on humans yet and that we are far away from any talk about compassionate use I guess. What a shame.

I´m having a ganglion stellatum nerve blockade on Monday, but that will only work if the trigeminal nerve is involved with the pain. I´ll tell you if it did anything in the proper thread for it.

@FGG, @100Hz and @Zugzug:

Not to disregard anyone else, but from reading different threads it seems at least us four suffer with noxacusis in the extreme.

I can only speak for myself, but it kills me every second of the day. There does not need to even be sound present. Just knowing I will at some point through the day be exposed to some kind of sound makes me on high alert every second of the day. High frequency noise cancellation does not really cut it. Industrial hearing clocks makes me feel so damn isolated and put pressure on my ears.

You guys seem so highly intelligent to me. Have you not found anything to help ease your pain, except for probably benzos?

@FGG, do you think there are any present meds that act on the NaV1.7 channel? Like any of the antiepileptic drugs for instance?

It is just crazy that there are so many interesting drugs in development, but they seem to never develop from that status. It is like time has come to a halt. It is Twilight Zone and Groundhog Day at once having this condition.

I just wish we all could find a way to ease the pain.

@Orions Pain should not be left out of this unfortunate roster, if it is not too presumptuous for me to speak on their behalf.

 

[grate_biff]

@FGG, maybe I have missed it in the jungle of different threads, but I'm curious if Ambroxol has helped your pain in any way? Thanks.

 

[FGG]

@FGG, maybe I have missed it in the jungle of different threads, but I'm curious if Ambroxol has helped your pain in any way? Thanks.

So far, 3 people including me have tried it and it seems to be that it makes a big difference for trigeminal/facial nerve pain and not so much on pain within the ear itself. It helps clear the ET as well. Is your pain more ear or face?

You can read the accounts in the "Pain Hyperacusis in Relation to Acoustic Shock & Synapse Disconnection" thread in the Hyperacusis section.

 

[grate_biff]

So far, 3 people including me have tried it and it seems to be that it makes a big difference for trigeminal/facial nerve pain and not so much on pain within the ear itself. It helps clear the ET as well. Is your pain more ear or face?

You can read the accounts in the "Pain Hyperacusis in Relation to Acoustic Shock & Synapse Disconnection" thread in the Hyperacusis section.

Definitely ear. No facial pain.

I have chronic kind of straining pain in my ears (could be MEM, but I have cut right Tensor Tympani muscle).

It could be the stapedius muscle. Is that not also the muscle that connects to the facial nerves?

My main problem is the mixture of distortion/UHF reactiveness to sound. So my pain lies in the UHF reactiveness in addition to a pain response as well. I'm not unsure anymore about what's wrong in my case. I can literally feel it stems from nociceptive NF in my cochlea. Am I alone in perceiving it like this? Why are all our cases so different?

Happy some of you got at least partial relief.

I'll see a pain doctor in two weeks. She likes to fill up with Lidocaine deep into my nostrils (transnasal ganglion blockade) which may have an effect, but very short of duration, indeed.

I'll definitely ask her about Ambroxol. It's supposed to be 40 times as potent as Lidocaine.

l'll read the appropriate thread. Thanks again FGG.

 

[serendipity1996]

Fascinating work being done by Michael Levin and his lab on bioelectricity and its potential for regenerative medicine.

The New Yorker: Persuading the Body to Regenerate Its Limbs

Welcome to the Levin lab: investigating information storage and processing in biological systems

 

[Nobody19]

DeepMind says it will release the structure of every protein known to science

DeepMind will release the structures of all known proteins. I wonder if this will help us!

 

[Nobody19]

Paralysed man with severed spine walks thanks to implant

And the scientific article for those interested:

Activity-dependent spinal cord neuromodulation rapidly restores trunk and leg motor functions after complete paralysis

 

[Nobody19]

Small molecule lends big hope for brutal seizure disorder - Scope (stanford.edu)

All brain function is roughly based on a sort of balancing act between excitatory neurons, which fire in response to stimulus or during cell-to-cell communication, and inhibitory neurons, which keep the excitatory neurons in check, ensuring that they don't fire too much. The parvalbumin brain cells are essential to maintaining the inhibition side of the brain's activity.

Sounds familiar!