What's Up With This Retigabine (Trobalt, Potiga)? A Short Version Please

Discussion in 'Support' started by Robert44, Oct 7, 2015.

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    1. Robert44

      Robert44 Member Benefactor

      Location:
      New York
      Tinnitus Since:
      April 2015
      Cause of Tinnitus:
      loud concert
      Hi, I'm still new to all of this. Please forgive me.

      I hear a lot about Trobalt, Retigabine, Autifony etc....

      I read that @Danny Boy was cured by Trobalt.

      Can someone fill me in (the short version) what all this is? Can I get Trobalt in the US for Tinnitus? I heard that there are bad side effects, true? If it's not available, will it soon be available? Does it really cure Tinnitus?

      Appreciate any help, Thanks!
       
    2. SteveSkis92
      Dumb

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      Retigabine is a broad spectrum Kv3 potassium channel modulator I believe. It's primary pharmacological application is in the treatment of epilepsy, not tinnitus. However, since epilepsy and tinnitus are both caused by hyperactive neurons, a cure/effective treatment for one may very well lead to a cure or treatment for the other. Because it is an anti-epileptic drug you would need to get an "off-label" prescription for it from a neurologist most likely. It is available in the U.S. under the name "Potiga."

      We do have a couple members here on TT that have brought anecdotal reports of improvement or even total resolution of their T. However, the two people here on TT to achieve total resolution both started using Retigabine within 3-4 months of their T onset. There are a handful of other members here though that have reported back improvement in their T, most commonly while still under the effect of the drug.

      Unfortunately, there are some pretty serious side effects that may come with Retigabine use. The drug itself produces a drunkened/confused state for about 2-3 hours after dosing, which is of course not ideal if you have to continue working. There are also reports of the eyes and fingernails turning a bluish color after long term heavy dosage. Honestly, these are just two of at least 30 potential side effects of this drug, hence why many members here on TT who have used Retigabine reccomend it only as a last resort.

      Autifony Therapeutics, led by Dr. Charles Large who developed Retigabine, is currently in a Phase IIa clinical trial of a more selective potassium channel modulator specifically for the treatment of T. The best explaination I have heard of the differences between Retigabine and Autifony's new drug, AUT00063, is that Retigabine is more of a shotgun approach while AUT00063 will hopefully be an effective sniper rifle approach. AUT00063 is still in clinical trials though and while we have had two anecdotal reports of significant relief from the drug, it is still at a bare minimum 2.5-3 years away from being marketed, and that's assuming it is deemed a successful drug.

      Hope this helped! I really don't know the exact science behind it all, but I feel I've got a pretty good grasp of it for an "Average Joe." For more specific and scientific info on Retigabine, I would reccomend looking up the posts from @benryu ...

      Hope this helps!
      -Steve
       
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    3. Blackbird26

      Blackbird26 Member

      Unless you have a gun to your head...don't bother.
       
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    4. Robert44

      Robert44 Member Benefactor

      Location:
      New York
      Tinnitus Since:
      April 2015
      Cause of Tinnitus:
      loud concert
      great reply. I appreciate it.
       
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    5. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Right, basically they work on the potassium channels and each channel is equated like this KCNQ=KV7. So trobalt works on 4 potassium channels KV7.2 to kv7.5. Autifony is different where is works on KCNC1 KV3.1 and has less side-effects and is more precise.

      SF0034 is a drug in development which is basically trobalt, but is more selective more potent and has less side-effects. Whereas trobalt works on KV7.2-KV7.5 SF is more selective only activating (Opening) KCNQ2 and 3 which are the most important channels for epilepsy and tinnitus.

      Furthermore, SF is being designed for epilepsy first, Autifony is targeting tinnitus and age related hearing loss. At the moment we don't know which one will be better, but, it's nice to have healthy competition in the market

      I hope that helps.
       
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    6. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      Hey there. So you were cured with Trobalt? If not, what happened?
       

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