Search results for query: *

  1. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I did a Twitter search and found a lot of recent write ups but nothing about what they are doing in Taiwan and India. Do you have a link?
  2. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I had the same question, though visual snow doesn't bother me nearly as much as my ear stuff. We might have to wait until enough VS peeps try it and report back but, off hand, it seems potentially helpful for VS.
  3. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    You probably took an NSAID which are known to cause tinnitus in some people. Just "fighting inflammation" isn't what's causing those effects. Both Fish Oil and Advil, for example, act on the pink arm of this diagram and Fish Oil isn't known to cause tinnitus: Ebselen reduces the effects of...
  4. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Someone suggested that possibility because of the vaccines and a few other COVID-19 treatments. It doesn't look like that's a blanket policy though. The clinicaltrials.gov page lists the trials and their time courses.
  5. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Phase 3 for Meniere's (ends 2023). Phase 2 for COVID-19 (ends 2022). They would have to skip Phase 3 for COVID-19 for it to come out 2022. It's possible but 2023 could be more likely.
  6. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Off label use is mostly about finding the right doctor unless it's a common off label use (e.g. antidepressants as sleep aids). It might require doctor shopping which is an inconvenience but doable.
  7. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    This is anecdotal but as a vet, I almost never had older clients who researched the conditions of their pet on their own. I made and printed a bunch of handouts especially for them because they only wanted to get their info from the vet (or weirdly, Facebook). With Gen X (I'm one), it seemed...
  8. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    There is a tendency for the older generation (who didn't get internet until their late 40s) to pay for the best doctor they can find and just trust what they have to say and not second guess it. Sadly he may have been told psychological treatment was all he could expect and may not have sought...
  9. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    That is really strange...
  10. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    It's a very complex drug. I posted about its mechanism of actions on page 23 of this thread. So far it has lowered tinnitus clinically in Meniere's patients (the only group tested so far) and in some rodent studies showed behavioral improvements that reflected tinnitus and hyperacusis reduction...
  11. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Going with a US manufacturer is probably the only way to go (the key is finding someone in research to order it). Glad you got the sample tested.
  12. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    New company investigating Ebselen for recurrent C-diff infections (pre-clinical and much further behind but interesting): Facile Therapeutics
  13. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Phase 3 for Meniere's (ends 2023). Phase 2 for COVID-19 (ends 2022).
  14. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Well, this drug is extremely complex so I'm mostly speculating but if yours is severe enough to be "too much to bear" at times I think you likely have more of a locally inflammatory component than you might otherwise. Just my opinion.
  15. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    It has a lot of effects. That seems to be something the drug could be capable of for sure.
  16. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I think it will be pretty universally effective as a preventative but as far as treating tinnitus, I think it will have some benefit in most people but a dramatic benefit in a certain segment. You aren't fixing an underlying cause, you are attenuating the after effects. However, I think people...
  17. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I think it should act on all frequencies. The drug gets really good systemic penetrance. Crosses both the BBB and Blood/Cochlear barrier well. I don't think everyone will likely get the same benefit from it since I think it will depend on a lot of individual inflammatory factors. That's just my...
  18. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    That's up to you to research and decide yourself.
  19. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    You have to contract a lab to make it for you. In the US, they only sell to "research labs" but China can be less strict about this. I would get an outside lab to test anything you get from China. I don't know which lab to recommend. If you could possibly wait, their drug is pretty far along...
  20. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Ebselen is not strictly an "anti-inflammatory drug" and, even in that capacity, it is not anti-inflammatory in the way anti-inflammatory drugs usually are (i.e. primarily affect chemotaxis and migration of neutrophils and vascular permeability). Actually, Ebselen may have some direct effects on...
  21. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    That blog is all over the place. In one place it says the drug is safe and well tolerated and then it suggests it could make you paler and more prone to skin cancer. Definitely don't take very high doses I guess though. Just in case.
  22. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    My guess is a lab is not going to bother pressing it into tablets for you, so probably powder. I personally would 3rd party test anything that comes out of a Chinese lab first but that's just me. It's not a requirement and is strictly a matter of trust. Products out of China have a mixed...
  23. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    More for hyperacusis/noxacusis.
  24. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    This company has a promising Nav1.7 blocker in pre-clinical. Seems roughly where the Trobolt reformulation is since they are starting to be talked about in biotech circuits: Tackling the Opioid Epidemic with a Novel Gene Therapy for Chronic Pain
  25. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Their current otoprotection trial is here: A Phase 2b Study of SPI-1005 to Prevent Acute Noise Induced Hearing Loss (PANIHL) And they don't include a 600 mg cohort. Seems there is an efficacy sweet spot, which wouldn't be too bizarre since its effects are indirect and on things like enzyme...
  26. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    They haven't listed locations yet on clinicaltrials.gov for the COVID-19 trial, so they definitely haven't started recruiting yet. They listed these contact names for the COVID-19 trial: Miriam Treggiari and Haifan Lin. Both out of Yale. Maybe someone can shoot them a line and ask where they...
  27. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    My thought: I would guess it would be highly individual and depend on how much neuro inflammation you have. I think there is a good chance it will at least help people with cochlear causes but the degree will vary a lot imo from minor to game changing. I don't think it will do much for middle...
  28. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    They aren't at all in the same category. And besides that Otividex was only being assessed for Meniere's vertigo episodes (which is highly subject to placebo effects). Here are the outcome measures for Ebselen and Meniere's: Primary Outcome Measures: Incidence of Treatment-Emergent Adverse...
  29. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    No studies but there was a blurb amount possibly settling neuro excitability and they saw a possible use for more chronic tinnitus (as well as bipolar and even Parkinson's -- @Jazzer keep an eye on this one for possible off label use since it's in Phase 3).
  30. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Maybe relevant. Like Ebselen, Selenium helps modulate Glutamate excess neuroexcitabilty but one difference is that Ebselen has a much better diffusion across the blood cochlear barrier than regular Selenium. I wonder how that person would so with Ebselen, possibly that much better.
  31. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Ah ok. I didn't see that one. I wonder what the results were. They are recruiting now for a similar study (preventing hearing loss with acute noise injury) with a longer duration now (7 day course vs 4).
  32. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    As far as I know, it's only been in pre-clinical and trials for Meniere's. Not sure how common hyperacusis is in that population.
  33. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I firmly believe if this does help noxacusis it will take a long time for the pain fibers to become desensitized again. There won't be an instant result imo for whatever does end up helping, if this is one of those things. Things that are the direct result of neuroexcitability by itself...
  34. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I think reactivity is among the most promising indications for drugs like this personally.
  35. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I just want to chime in that "how much it affects tinnitus" is going to be very dependent on how much in each individual is inflammatory or neuro-excitatory. This shouldn't help with synapse loss or hair cell loss, for instance if there isn't also a larger inflammatory component. Acutely, it...
  36. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Your doctor applies for you (they should know the process) and contacts the company. More here: Wikipedia: Expanded Access I don't know how long that takes, though, could be a few months and the company doesn't have to say yes but this is the safest and best option by far. If it is literally...
  37. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Has anyone tried applying for Compassionate Use? That would eliminate the question of purity from the labs.
  38. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    You can have this made in US labs. I found like 5 with a quick Google search (though I can't vouch for any specifically, they seemed like authentic labs).
  39. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    The only one I could come up with last time was fibromyalgia. In those cases, the pain remains even after the stimulus is removed. However, I wonder if there are undiagnosed ongoing conditions in many if not all of those cases (eg. viral) that perpetuate the inflammation rather than it just...
  40. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I agree and made that point before that inflammatory processes are involved in noxacusis generation, too. My question is and has always been: what happens to nerve fiber sensitization once the inflammation is reduced or removed? I am hopeful that eventually (this will very likely not be...
  41. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Sure, I don't mind. They are talking about loudness hyperacusis because they refer to central sensitization, not sensitization of the type 2 fibers (as in noxacusis).
  42. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Just to clarify, this paper concerns acute loudness hyperacusis, not noxacusis. Though some here have speculated that it may help some of the inflammatory portion contributing to the ATP leakage. Keep in mind, if it does help with that, it likely won't be quickly imo as the fibers are still...
  43. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Absolutely not. It has unusually good penetrance across the blood/cochlear barrier.
  44. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Here are the different doses they are using in trial: https://clinicaltrials.gov/ct2/show/NCT02779192 Probably good to start with the lower dosing if you are going to do this. You'd have to call around to find pricing. It varies a lot. It seems to be on average a lot more than Alibaba--which...
  45. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I would get it tested first. Or better yet I would buy it from a certified US lab if I were going that route and still get it tested by an outside lab first. You could be buying anything from Alibaba.
  46. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    They are "not yet recruiting" for Phase 2b now (you can look it up on clinicaltrials.gov) and have been for years. My speculation on this is that it would be very difficult (to near impossible) to recruit for this (noise-induced) study since it is a noise challenge to people with a history of...
  47. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    It's a blog from 2017 basically describing how structurally different the drug is from most drugs and how it's difficult to test in a lab because you need reducing agents to produce an ideal environment to study the effects but the ones they were using were paradoxically inhibiting Ebselen's...
  48. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I love that he's commenting on some random internet entry.
  49. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    They are recruiting for acute noise-induced hearing loss now as a preventative. As to whether, like in Meniere's, it would help more chronic cases, it is theoretical. Read the thread.
  50. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I didn't save that particular link. Sorry.
  51. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    There are thousands of labs, I imagine it varies a lot. I would also factor in buying extra and getting it tested by an outside lab, too. The one lab I looked at (and cannot vouch for as it was just a Google search) would end up charging about $5k for the full 21 day course used in the trial.
  52. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    You could pay a research lab now to make Ebselen if you are that desperate. Otonomy also has a drug finishing up Phase 3 that is very promising for Meniere's vertigo attacks that should be out middle of 2021.
  53. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    They haven't released a detailed report beyond a summary that I know of.
  54. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Not necessarily imo.
  55. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    I think its effects will be highly variable depending on how much is structural damage versus neuro inflammation in each individual. I don't at all expect it to be universally helpful except for certain etiologies.
  56. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Hasn't been shown to so far. I suspect it is because you aren't really decreasing Glutamate or its effects in that case as much as decreasing the symptoms of it.
  57. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    There are two cohorts. One is 200 mg BID and one is 400 mg BID.
  58. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    They are recruiting for testing it on acute noise induced hearing loss now. The mechanism is multi factorial but the most important is probably that it dampens Glutamate's neuroexcitability effects. It also is a potent free radical scavenger and inhibits mediators of oxidative stress as well as...
  59. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    Here are the very basics about the drug: https://en.wikipedia.org/wiki/Ebselen PubMed has more detailed physiologic and biochemical info (as well as studies on the compound).
  60. FGG

    Sound Pharmaceuticals (SPI-5557 & SPI-1005)

    @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...