Retigabine (Trobalt, Potiga) — General Discussion

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

    1. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      you do what you want and dimiss all the info the `veterans` give you ... seems like everyone's attitude lately ...

      did you see a GP for qt interval rate or maybe you don`t care about that either?

      i`ll add a Q&a from autifony to show why it is better to go for longer time and a higher dose.

      Q. How soon does the drug start to work?
      A.
      In models of tinnitus pre-clinically, a beneficial effect was seen quite rapidly, and we know that the effect of the drug on the nerve cells themselves is very quick. However, because the tinnitus will have been present for many months, it may take longer for the drug to have an effect, possibly days or even several weeks. It is for this reason that if somebody joins the study it is really important for them to stay right to the end.

      again you do as you like ... but if your going to go through the trouble you might aswell get a good benefit from it.

      600mg`s a day will not give you the relieve you think it will ... it sounds high because you start at 300 but is still low dose... you will have a certain placebo effect together with a short bursts of silence or highness that last only for less than an hour maybe ... I had even more relief the first days at 100mgs tid than at 200mgs tid ... anyway i`m off to go and buy Trobalt now ... good luck.
       
    2. grate_biff
      In pain

      grate_biff Member Benefactor

      Location:
      Moss, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma using headphones
      Well, I am listening to your advice. Im gonna ask for two boxes and I have a schedual to follow.
      Nobody really knows how to to this, right? Veterans or not, as you call it. I´ve read all the users experiences several times and they are all different regarding dosage and timeframe are they not? But most seem to benefit from the drug, but I have also taken note and I am aware of the possible sideeffects. But desperate times claims desperate measures.
      I have a doctors appointment on tuesday and I will ask for the appropriate tests and follow ups, but I will try out Trobolt no matter what she says.
      Thank you for your involvement nills!
       
    3. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      just beware of your heart ... the rest should be fine if you pay attention but the heart is a reason to stop taking it asap. Sure we know how to do it by now ... it`s just that it isn`t a real cure so the results are a bit random. and only a few have really persisted with it at good dosages and also taken care of their health while doing it ... and they added their info and now are on the silent front so you need to find the info between all the pages. Anyway they added their million dollar advice and it`s there for the taking ... good luck!
       
    4. grate_biff
      In pain

      grate_biff Member Benefactor

      Location:
      Moss, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma using headphones
      Thank you. U 2 mate!
       
    5. locoyeti
      Sunshine

      locoyeti Member Benefactor

      Tinnitus Since:
      2/2014
      update with me: t is still low, and is not much of an issue with me anymore. i don't notice it much, and when i do it doesn't bother me.

      good to see that other people are joining in our informal trial. i would urge those that are starting this drug to do a search on this thread for my posts and read through them as i feel as though i have provided some good information regarding RTG. other people with informative posts are @attheedgeofscience @benryu @jazz @Zimichael and perhaps a few others, all mostly at the beginning of the thread.

      @grate_biff i think one thing you will notice is that the tone of your T will purify and then distortion will go away. my H went away as well (which, as I have said before, was most of the suffering for me - the H). I think @Geo this will happen for you as well, please let us know. also i must emphasize that you should get up to at least 300mg x 3 times a day, and i would highly recommend doing at least a few weeks on 400mg x 3 times day. good luck guys, and please keep us updated with your progress.
       
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    6. sonicboom2000
      Sad

      sonicboom2000 Member

      Tinnitus Since:
      2012
      I talked to Danny Boy on Skype about his experiences with Trobalt. If anyone wants to listen they can view it at
      Tinnitus Treatment Trobalt(Potiga) Interview...
       
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    7. preslys

      preslys Member

      Location:
      Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      unknown
      Trobalt helped me a lot but unfortunatly tomorrow i will be off of it
      I still have only 3 pills .
      I spent 20 days in silence and now am preparing psychologically my self to return to hell.

      upload_2015-7-17_14-56-53.png
       
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    8. uae96
      Thinking

      uae96 Member

      Tinnitus Since:
      6/14/2015
      Cause of Tinnitus:
      Noise induced
      Good luck man ! Hope it stays like the way it is now , I'm sure it will stay silent ! Stay healthy
       
    9. preslys

      preslys Member

      Location:
      Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      unknown
      yes I hope still like where am I now ( 2/10) and not 5/10 .
      thank you my friends
       
    10. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      It's so difficult...It really is.
       
    11. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      20 days in Silence? what were your amount in mg`s a day? ... I`m at 600 and very little effect on volume yet high as a kite ... although I have to say I jumped to 600 a day in about 3 days and now i`m keeping this for a little while and will jump with 50`s or 100`s ... you should do an experience report weekly man, it helps to keep data.
       
    12. papu
      Chatty

      papu Member Benefactor

      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Acoustic Trauma
      Has anyone else notice that the three people that got better and quicker results from trobalt had tinnitus less than or near a year.
      (Mpt, dannyboy and "elvis" preslys).

      Just curious.
       
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    13. uae96
      Thinking

      uae96 Member

      Tinnitus Since:
      6/14/2015
      Cause of Tinnitus:
      Noise induced
      I heard it could work for severe t , but it has nasty side effects
       
    14. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      Also locoyeti is a bit over 1 year .... hmm :meh:
       
    15. papu
      Chatty

      papu Member Benefactor

      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Acoustic Trauma
      You are right I forgot about him
      It's very curious data the other trialee have gotten some partial relief or nothing at all like for example zimichael that has had it for a long time
       
    16. Geo

      Geo Member Benefactor

      Location:
      California
      Tinnitus Since:
      11/2012
      i think it depends on the sevirity of the T the stronger it is the less trobalt will help..
       
    17. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      You planning on upping your dose?
       
    18. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      severity is very personal.. I`m at 200TID now for 7 days and although sometimes i`m not aware of T anymore in busy circumstances thanks to the mellowing properties of Trobalt, I just woke up and it is an annoying 6 ... Danny said it lowered from a 10 so he is proof it can go down a lot with Trobalt. But as I said before ones mans 4 is another`s 8. It`s hard to really judge T. I`m now going to go up 150TID a week as is suggested by Glaxo that makes the product. So in about 2 weeks I should be highest dose and than we will know.

      and at the dose you are at it is safe to say you can not have any relief unfortunately.
       
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    19. preslys

      preslys Member

      Location:
      Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      unknown
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    20. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
    21. preslys

      preslys Member

      Location:
      Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      unknown
      I have to do an overall assessment each taking a box of Trobalt
       
    22. preslys

      preslys Member

      Location:
      Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      unknown
      all my consultations are paid by my company
       
    23. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Must make you scared of taking it, surely?
       
    24. preslys

      preslys Member

      Location:
      Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      unknown
      It is Free so why not
       
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    25. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      You're right, it's better to be safe than sorry.
       
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    26. erik
      Cool

      erik Member Benefactor Hall of Fame

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012 or earlier?
      Cause of Tinnitus:
      Most likely hearing loss
      This thread is a long mess and hard to navigate. Do we have a running total of people who had tried Trobolt/Keppra/?, dosage amount, time, and results?
       
    27. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      @preslys

      very cool my friend and also that you can do those check ups! ... wish you well .. still can you tell me how high in dosage you went and how silent it was ... i`m at 600 and nothing .. or at least not consciously.
       
    28. preslys

      preslys Member

      Location:
      Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      unknown
      @nills

      I have posted this befor
       
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    29. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      Ok didn`t see that, thanks ... so you actually took 300 mg`s at a time ... so maybe it is still dosage at a time. I take the same amount but in 200ThreeID thanks for the info.

      hard to pinpoint why the difference in experience ... it`s all guessing and trying ...
       
    30. preslys

      preslys Member

      Location:
      Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      unknown
      @nills
      at the beginning you had an improvement, but what I see now it is not the case. Am I right ?
       
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