Retigabine (Trobalt, Potiga) — General Discussion

Discussion in 'Treatments' started by Mpt, Jun 10, 2014.

    1. randomuser

      randomuser Member

      Tinnitus Since:
      05/2013
      Retigabine and AUT are different molecules targeted at different sites, the IC50 ("effectiveness") of both will not be the same, the maximum tolerable dosage of AUT is still unknown but it looks like it'll be safer and with less side effects. At the end, it's all about biochemistry, you have a small molecule interacting with a protein, the specifics of the interaction are exquisitely controlled and by no means two different molecules will have the same effect, plus AUT seems to be targeted at KCNQ3.x, while RTG is a "shotgun" approach.

      I would expect less side effects with AUT, which means that we'll be able to take it at higher doses compared to RTG and achieve a better channel opening effect, then the expected repolarization will be achieved faster and with durable effects. And if it doesn't work, adding one atom here or there in the same molecule will help more. Don't forget that there's another molecule in development, SF34, which is essentially RTG with an added fluorine atom to increase its effectiveness, and it looks like would be, again, more potent, safer and better tolerated. For now, RTG, a "test molecule", is working for many people, I don't see why AUT, better targeted, more potent, better tolerated, wouldn't work the same way if not better. Then, the brain plasticity will do the rest.

      Stay optimistic.
       
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    2. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      It makes sense to me that if having T for a long time will make it ingrained in your brain and less likely to go away then the opposite should be true. That is ...having less T with chemical assistance for an extended period of time (a few months) should have a permanent effect.
       
    3. dan
      Chatty

      dan Member Hall of Fame

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      Actually that is promising. It would be much worse if you had absolutely no effect. Since you experience no side effects so far I would recommend following Danny Boy advice and going up to 400 x3.
      I don't understand why you refused to buy pills when you had the chance and now you have to worry about your supply if you wanted to increase your dosage.
       
    4. Rube
      Fine

      Rube Member Benefactor

      Location:
      USA
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Loud shit
      It sucks that the autifony trials in USA are only for age related hearing loss for the time being.
      On a separate but related note, I had a discussion with one of my neighbors who works for the underground transit system in NYC and I just found out due to his job he has t and pretty bad hearing loss (he said almost all of his coworkers have t) so I informed him about the autifony trials which happens to also take place at a hospital 2 mins away from us. He was very interested so I'll keep following up with him and gently nudge him to apply. Of course I'll give full updates on the autifony thread!
       
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    5. Rube
      Fine

      Rube Member Benefactor

      Location:
      USA
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Loud shit
      @linearb sorry that you had a negative side effect. But very encouraging to hear it did something for you. If you don't mind, when you say it "worked" can you expand on that a bit? Thanks!
       
    6. markoana

      markoana Member

      Tinnitus Since:
      2.2013
      Krajisnice, u should not be worried, good sign is that it works for u for some time (even 20-30 minutes) so it means that it has effect on your brain chemistry. AUT works on different Kv channel, it will be more precise, more potent, as members already wrote here. So I do not see why u should be worried!
       
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    7. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      Hey Valeri,

      yes initially the reduction was only a short time ... but gradually it seemed that it never went up to the bsaeline ... also early mornings became more and more silent ... late evenings more bearable ... but yes, first you will only have 10 or 20 min or 1 hour effects... don`t be disheartened by it ... just watch your health and side effects and continue ... it does something.
       
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    8. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Dan, back then I didn't have any of this crap hiss/sizzle reactive noise.
      I tested Trobalt (1 box I got from Switzerland) for the "original" engine noise I have and it does nothing.
      That's why I didn't buy any more, so nothing to do with money or anything but just a pure fact that I didn't need any more at the time.
      But...things change and now I don't have enough to do proper run.
       
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    9. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      how high in mg`s did you go with trobalt?
       
    10. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      The tinnitus seemed greatly reduced in intensity by the second day I was on it. However, I also developed these uncomfortable bladder/urethra sensations the same day, which have not resolved (a week later and counting).

      It's unclear to me at this time whether I'm experiencing an infection of some kind, a trobalt effect, or a completely unrelated flareup of CPPS symptoms (which I have had in the past, but never these exact symptons). I'm definitely worse off this week than I was when I was "only" experiencing tinnitus, and I won't proceed with Trobalt again (certainly not until I get a grip on these symptons!) -- but I really don't have any idea how much trobalt had to do with it, it could be coincidental -- from what I've read, it seems extremely unlikely that a total dose of 700mg Trobalt taken over 60 hours, would result in problems that last this long.
       
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    11. Champ
      Woot

      Champ Member Benefactor

      Location:
      Boston, MA
      Tinnitus Since:
      01/2013
      Cause of Tinnitus:
      Acoustic trauma from headphones
      Yeah I would get checked with a doctor. 700 mg of trobalt isn't poisonous and shouldn't affect your bladder like that.
       
    12. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      800mg, 300-200-300, but results are short lasting.

      With this hiss after I take rtg there's almost a physical sensation equivalent to shutting a door and the noise stops and my head become clear
      I wish it would last!
       
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    13. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      I've seen a PCP and a urologist already; both thought it was possible that even the short-term, low dose has re-kindled my (largely long dormant) pelvic pain issues, but there's no way to have much certainty about that. In any case, obvious infections etc have been ruled out.
       
    14. Carlos1

      Carlos1 Member Benefactor

      Location:
      Boston
      Tinnitus Since:
      08/2013
      Cause of Tinnitus:
      Root Canal
      @linearb hope you feel better soon man sorry to hear about the trouble your having
       
    15. gintas

      gintas Member

      Location:
      Lithuania
      Tinnitus Since:
      2015-05
      so you took 200mg in a day ?
       
    16. papu
      Chatty

      papu Member Benefactor

      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Acoustic Trauma
      It seems to me without having all the facts and your medical history that you might be suffering from chronic prostatitis. (hesitation will urinating, pain while voiding, the sensation of having already pee and get the urge to go almost inmmediatly, pain over the bladder region, pain between rectum and scrotum, uncomfortable or painful eyaculation and sometimes lower back pain) do you have something like that?
       
    17. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      as long as you don`t reach 1200 it`s not possible to make final conclusions ... sometimes 300 had less effect than the first 100 ... best effect was at 3 x 400. but it comes for a price .. you`ll be `trobalt high` for a big part of the day.
       
    18. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      Yes, I have a history with this condition, and one theory at the moment is that something (possibly muscle/nerve glitches from Trobalt, possibly unrelated) has caused a flareup in this which is causing my present symptoms.

      Whatever the case, my constant 14khz dog whistle seems like a walk in the park in comparison -- I've missed 2 and a half days of work in the past week, compared to maybe a combined total of 3-4 days over the past 5 years for Tinnitus issues.
       
    19. papu
      Chatty

      papu Member Benefactor

      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Acoustic Trauma
      @linearb how old are you? if I may ask?
       
    20. Yo-Han

      Yo-Han Member

      Location:
      Belgium
      Tinnitus Since:
      2011
      Sorry to hear that. I had kidney surgery (mechanical problem) and i know i was freightened then and sometimes in very serious pain. The pain from my problem was caused by hydrophrenosis (obstruction of urine leaving the kidney beacon) and was indeed nothing to be compared about ... even to H and loud screechy T days

      Your problem might be caused by trobalt since retigabine/ezogabine effects the smooth muscles of the bladder and has known side effects on the urinal tract (causing retraction). It's very likable that the symptoms will recede off course if its from the trobalt, given time. Maybe you even pee'ed out a small kidney stone since you wrote about sudden pain in the d!!k

      http://www.ncbi.nlm.nih.gov/pubmed/22428574
       
    21. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      34.
       
    22. grate_biff
      In pain

      grate_biff Member Benefactor

      Location:
      Moss, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma using headphones
      The reason I asked about GABA-turnover is because I once got Sodium valproate, when hospitalised for my benzo addiction in january this year. It seemed to attenuate my T somewhat and I have since wondered why. According to the antiepileptic "map of targets" you posted it targets the GABA -turnover. But it also targets the Voltage-gated Na+ channels and the LVA Ca2+ channels(wtever that is) which also ofcourse could be what reduced my T. I have heard that Tegretol(Carbamazepine) also helps and that also affects the V-g Na+. Seems to me K+ ions are not the only overactive neurons responsible in the brain regarding T. Recent research also tells us there are several mechanisms at play here. I´m going nuts trying to understand it all.

      Since getting T I have like most of you tried to really understand what mechanisms is at play here, with this tormenting affliction, that T is.
      I am sure GABA and Glutumate has something to do with it cause benzo helps lowering T. But that way is out of the question for me as I am fighting for my life to try and get out of it and have been since 2012. Its really crazy how long it takes to overcome benzo-withdrawl-symptoms. I´m in the middle of it and I still don´t believe it. Neither do my doctors really. Still Im sitting here with tremors shaking from the core of my body, periods of extreme anxiety,depression and nausea.

      Suprisingly my new doctor prescribed 50 mg Trobalt to me. ( My plan is to start off easy with 3*50mg) I showed him that I had already acquired boxes of 100 mg and 200 mg from Spain. I think this is a smooth thought of "ice-breaker" in that respect should Trobalt prove effective for me. If it works and I want more, how could they deny me? Atleast I don´t have to worry about going to Spain.

      Went to the pharmacy to pick it up today as they had to get it from central depot. To my suprise it expired 04/2015 so they have to get me a new box, but not until a couple of weeks. I is just not in stock anywhere. She called several other pharmacies in town. No one had it! I guess it just underlines that this drug is not excactly a best selling commodity. In fact its extremely rare.

      Sry, Im just rambling here...

      Just some questions to you who have tried Trobalt:

      I think what I dread the most in life(besides T) is dizziness. Did any of you have really bad dizzy-spells when taking Trobalt and if so at which dosage were you on?

      It is very important to me to get fit and I like to go jogging three times a week. Were any of you active while on Trobalt? Did that do anything regarding the sideeffects?

      Did you drink alcohol when on Trobalt? If so, did that have any effect either way?

      Thank you!
       
    23. papu
      Chatty

      papu Member Benefactor

      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Acoustic Trauma
      @grate_biff
      1) yes at 300 mg three times a day
      2) exercise is good for everything even the soul so exercise away jus don't go running near cliffs
      3) one or two social drinks is OK just don't over do it and tried not to do it right after ingesting pill

      Just my 2 cents
       
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    24. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      "Physical exercise has been demonstrated to be neuroprotective in both clinical and laboratory settings."

      So get jogging people lol

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2920558/

      Actually, this explains why whenever I went out on long walks I always came back with zero tinnitus, even when I was on trobalt, if I sat around the house it would be like a 2-3, but always zero when I came back...Also trobalt reduces glutamate in the brain and exercising normalises it.

      Glutamate[edit]
      Glutamate, one of the most common neurochemicals in the brain, is an excitatory neurotransmitter involved in many aspects of brain function, including learning and memory.[61] Glutamate regulates certain exercise-related memory processes primarily via cotransmission with dopamine in the dopaminergic projections from the ventral tegmental area;[62][63] in particular, exercise has been shown to modulate (normalize) glutamatergic cotransmission in the mesocorticolimbic dopamine pathway.[31]
       
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    25. Yo-Han

      Yo-Han Member

      Location:
      Belgium
      Tinnitus Since:
      2011
      @grate_biff

      This article will explain more then the short exerpt posted before a few pages back (too small of a bit in the big picture) -Hardcore link-

      http://www.intechopen.com/books/anx...f-glutamate-gaba-harmony-in-anxiety-disorders

      Chapter 2 is about gaba turnover, its not easely explained in 1 sentence

      Gaba turnover is part of the complex gaba glutamate cycle (glutamine->glutamate->gaba ... -> ), not novice stuff. You gotto at least understand benruy's stuff in this thread to dive into this material wich delves deeper. The krebs or TCA cycle is where i quit, that's too complex. But i know its the cycle that converts your food(carbs, fats, proteins) into amino acids and neurotransmitters(very simplisticly said) or in short: food->energy

      And if all this is too complex (it breaks my head to sometimes) i find this article a great read (not super easy, but the bottom line in as simple terms as possible) A holostic site, but facts based on science:

      http://www.holistichelp.net/blog/how-to-increase-gaba-and-balance-glutamate/

      ps this kinda ads to dannyboys's post above about glutamate... gaba is the counterpart, the one that calms things down. But they are odd twins gaba and glutamate, they need each other cause glutamate is a gaba precursor (needed to produce gaba). I think the balance is also a probably critical point in some T people!

      Its the balance that counts, not many psych meds try to increase Glutamate i read somewhere. Could be dangerous. The effect off trobalt on glutamate is kinda an extra i thought and blocks excesses instead of lowering glutamate too much(not 100% sure, lost article) Excercise and brain training will do (unless you have a real serious off balance) and exercise will also have a good effect on serotonine levels.
       
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    26. undecided
      Breezy

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      Tegretol is a sodium channel blocker, seems to work best on the typewriter kind of tinnitus.
      It is however an ototoxic drug with serious side effects, so you'll be playing with fire.
      A safer option as far as sodium blockers go is Neurontin... Pick your poison.

      Benzos work for tinnitus mainly because they act as a brake in the brain through GABA and secondly because they are quite potent sodium channel blockers as well, a fact that is not commonly mentioned (that's part of the reason they are effective as anticonvulsants).

      Another option is Ca+ (calcium) blockers such as stugeron and sibelium. These have quite a calming effect for the labyrinth and the vestibular system so they may be worth a try, they're quite safe for a short trial.

      But it seems that potassium is the way to go for tinnitus. All the research is focused there. In my opinion, the drug that cures tinnitus will have to be a dirty cocktail targeting all the above neurotransmitters.

      Maybe one day I'll take all the above simultaneously and see how my tinnitus is after they revive me in the ER.
       
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    27. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      @Danny Boy , When would you say that in the 10 month period you were on trobalt you felt that you reached zero T.
      Was it gradual or ?
       
    28. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Well, I have no clue...It just disappeared one day and I stopped trobalt straight away and it hasn't came back. It was random.
       
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    29. uae96
      Thinking

      uae96 Member

      Tinnitus Since:
      6/14/2015
      Cause of Tinnitus:
      Noise induced
      I know u probably have answered that before , but how long did you take it after you're t ?
       
    30. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Three months.
       
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