Member- Aug 21, 2014
- 5,055
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
Cilantro is a natural chelator of some metals, so I went through a phase where I ate TONS of the stuff. Zero impact on tinnitus, but now I know how to make really good salsa and guac.
RL648_81: Synthesis and Evaluation of Potent KCNQ2/3-specific Channel Activators
- Thread starter attheedgeofscience
- Start date
Cilantro is a natural chelator of some metals, so I went through a phase where I ate TONS of the stuff. Zero impact on tinnitus, but now I know how to make really good salsa and guac.
- Apr 6, 2020
- 1,033
- Tinnitus Since
- 2016
- Cause of Tinnitus
- 2016: headphones, 2020: worsened thanks to Rammstein
It's too early to tell. Many people have mailed Dr. Tzounopoulos and he wrote them that the pre-clinical trials (on animals) have proven promising so far. And we know that they have the necessary financial backing to proceed to phase 1. Thus, there's no reason to think that there's a dead end at this early stage. Maybe they are updating the website for all we know.
- May 2, 2020
- 202
- Tinnitus Since
- 01/2019 T, 04/2020 H
- Cause of Tinnitus
- T - long flight H - cumulative job exposure
I think TTTS comes from the same signals that cause pain in hyperacusis, so I bet it will help.
Very eager to see if anyone on here is able to get their hands on XEN-496 in the near future. I would warn anyone considering this that it is the same active molecule as in Trobalt. XEN-1101 is reformulated for fewer side effects but it won't finish phase 2b testing until June 2022, although we can expect topline results in June 2021.
Am wondering the same thing about side effects. I know that Trobalt caused visual snow syndrome in a number of people. Hopefully the negative side effects can be reduced. But we wouldn't know the long-term side effects until decades down the line. Although I'd gladly trade 5-10 years of lifespan for a tinnitus and hyperacusis-free life.
Do you need to take Trobalt continuously? I've definitely seen stories on here where people have mentioned cessation or permanent improvement of their tinnitus from a "round" of Trobalt, so I've never been clear on that aspect.
- May 2, 2020
- 202
- Tinnitus Since
- 01/2019 T, 04/2020 H
- Cause of Tinnitus
- T - long flight H - cumulative job exposure
Wonder what this means with regards to setbacks and spikes. If you experienced an acoustic trauma while on a kV modulator would you experience pain/burning as long as you stayed on the medication? Guess it comes down to whether setbacks are physical damage or neuropathic pain.
- May 2, 2020
- 202
- Tinnitus Since
- 01/2019 T, 04/2020 H
- Cause of Tinnitus
- T - long flight H - cumulative job exposure
I expect it would block most symptoms. It depends on how much more effective XEN-1101 is than Trobalt. I don't think most setbacks are from physical damage.
Very perceptive of you.... good news though, Prof. Thanos is addressing this issue with RL-81, he told me this himself. It's being tweaked.
I too am wary of taking a novel seizure medication for life. But if it offers temporary relief I'd be all over it. I have a feeling regenerative medicine will be out before potassium channel modulators anyway, so hopefully we won't wind up needing it. Always good to have a second line of treatment though.
Taking something once is of course going to be much more attractive and also much more beneficial in terms of safety. See this is why I think that the cochlear regeneration treatments are going to be better because you only need to take a small number of doses to complete the course and do not actually have to take it repeatedly to get and also actually maintain a benefit.
- Aug 14, 2013
- 2,457
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
This thread was created more than five years ago (by yours truly) with no developments since then (as far as I know). However, earlier this year, an in vivo-study was released on RL-81 suggesting that the channel activator is effective at the preclinical stage. It would seem, therefore, that the timeframe between the in vitro- and in vivo- study has been some five years...
The "non specific KCNQ channel activator" that is alluded to in the abstract is probably Trobalt.
The above is not much. But, I thought I'd share it for those of you with an inclination for science updates. And given the lack of progress elsewhere in the pharma landscape, the above is perhaps worthwhile keeping an eye on. Contacting either Prof. Wipf or Prof. Tzounopoulos should be feasible (in order to understand next steps...).
The "non specific KCNQ channel activator" that is alluded to in the abstract is probably Trobalt.
The above is not much. But, I thought I'd share it for those of you with an inclination for science updates. And given the lack of progress elsewhere in the pharma landscape, the above is perhaps worthwhile keeping an eye on. Contacting either Prof. Wipf or Prof. Tzounopoulos should be feasible (in order to understand next steps...).
- Sep 21, 2016
- 1,051
- Tinnitus Since
- 2011 - T, 2016- H, relapsed 2019
- Cause of Tinnitus
- noise-induced
Most of the discussion has been on Xenon Pharmaceuticals, which has developed a reformulated version of Retigabine with improved potency, safety, and selectivity. They already have two drug candidates in Phase 2b and Phase 3 of clinical trials.
I agree. XEN1101 is the winning horse right now even if it wasn't meant for tinnitus / hyperacusis.
AfroSnowman
Member
- Jul 23, 2019
- 1,120
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
Travis Henry
Member
- Mar 12, 2022
- 428
- 42
- Tinnitus Since
- 10/2021
- Cause of Tinnitus
- 1 Moderna Vac, Noise and stress I guess, its killing me
How come no-one has tried RL-81? What would be the dosage of RL-81 if one were to try it, hypothetically?
I believe it's powder so pill form.
But unlike RL-81, XEN1101 is not made for tinnitus.
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