Retigabine (Trobalt, Potiga) — General Discussion

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

    1. Paul10

      Paul10 Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Stress
      Right now, I would take a cereal bowl of this stuff. Turning blue and looking like a Smurf is a small price to pay at the moment.
       
    2. papu
      Chatty

      papu Member Benefactor

      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Acoustic Trauma
      Turning blue and looking like a smurf is ok but a lot of floaters (a little bit like i have now since i stop taking trobalt is ok) or visual snow is not a small price. If you are going to take it, taper up easily and at the first signs of visual problems stop. In my case was after 2 months and reaching 900 mg per day divided in three doses. Some people never had eye issues but the majority did. In my case the eye side effects reach a point that it was more scary than my tinnitus.
       
      • Hug Hug x 1
    3. Paul10

      Paul10 Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Stress
      Thanks Papu, to be honest I know very little about it; I was going to maybe see my GP about this but doubt it's even available anymore. I've a lot of learn!
       
      • Like Like x 1
    4. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      You will have trouble getting this pharmaceutical. As others have said, the side effect profile is too risky. I already have problems in one eye (from an injury) and not risking using the stuff despite having a few boxes sitting at home. It's only temporarily relief too.
       
    5. Paul10

      Paul10 Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Stress
      True. But I'm sure you know how it feels when we are at our low points with T. Will just have to wait it out until a refined version is made available!
       
      • Agree Agree x 1
    6. Aschenherz
      Dead

      Aschenherz Member

      Location:
      Germany
      Tinnitus Since:
      8 Feb 2017, 9.20 p.m.
      Cause of Tinnitus:
      unknown
      Tavor can u give a temporary Relief as well. I know, the Drug is addictive, but i know the feeling, when u need a break. Don't know, if i'm willingly go this road, but we both in our first Year. It will be better. Talked to someone in this Forum, who thought, it will never get better. After 1,5 Years in he doesnt have many Problems with it. Maybe once all two weeks. Be hopeful. It will get better.
       
    7. Dive Master
      Tired

      Dive Master Member Benefactor

      Location:
      France
      Tinnitus Since:
      06/2014
      Cause of Tinnitus:
      Airbag blast
      My experience is Trobalt helped me a lot the first year (200mg TID), decreasing my T from a 8 to a 2 and lasting. It's difficult to say if it's due to Trobalt, healing or habituation. Still, the first effects where awsome. The year after, I quitted progressively under medical supervision down to 50mg TID till complete removal. The Trobalt lost its efficiency (reached its limits) long before and I would think than being "high" made me forget my T too in addition to chimical action. If your body can tolerate it without dramatic second effects, it's worth giving a try and can possibly help in habituation. Now I'm free from Trobalt, Cymbalta (antidepressant) but still on lamyctal, 200mg daily and lysanxia "on demand" mostly due to a stressing work environment (IT). Keep faith!
       
      • Like Like x 1
    8. PatrickG

      PatrickG Member Benefactor

      Location:
      Stockholm, Sweden
      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Punch/kick to the right ear
      There are people here who are suicidal today because of permanent severe vision problems. Worth the risk?
       
      • Agree Agree x 3
      • Like Like x 1
    9. G61

      G61 Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Head and neck trauma
      This thread is way long. I only read the first page and the last page. I looked at PubMed, https://www.ncbi.nlm.nih.gov/pubmed/25779225

      This drug is similar to Gabapentin. One of the side effects is also the visual problem. I don't have good reaction with Gabapentin. I don't think I'm a good candidate. Some people are taking high dose and they are perfectly fine.
       
    10. grate_biff
      Alone

      grate_biff Member Benefactor

      Location:
      Oslo, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma, benzo/mirtazapine withdrawal, or combo!
      It´s similar to gabapentin as it is an anti- epileptic. Other than that they work on totally different channels in the brain. Two very different drugs indeed!
       
      • Agree Agree x 1
    11. jer

      jer Member

      Tinnitus Since:
      06/2015
      Cause of Tinnitus:
      Acoustic trauma
      So I am coming up on two years after the onset of my tinnitus. After a couple stupid moments with the dentist and some medicines which should not have affected my tinnitus (but did), I am having a lot of heavy spikes. I read that retigabine and trobalt are pretty much the only medicines that works at all for this affliction.

      I know that after 2 years I am considered to have chronic tinnitus, and there will won't be a lot of hope for new medicines, as they all seem to target the non-chronic tinnitus sufferer (even sf0034). Will doing a short course of trobalt or retigabine help me in any way, with either a permanent decrease I tinnitus or even one that controls the spikes I am having now? I do not plan to be on this for long, so please answer if you know what this would / could do for me in the short-term.
       
    12. vermillion
      No Mood

      vermillion Member Benefactor

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Neurological damage
      Like?
      I have to go to the dentist...

      Btw Trobalt is out of production. Discontinued.
       
    13. jer

      jer Member

      Tinnitus Since:
      06/2015
      Cause of Tinnitus:
      Acoustic trauma
      Like getting an ultrasonic cleaning. If you get a cleaning, have them do it by manually with tools by hand. If they say they can't. Just Walk away!
       
    14. vermillion
      No Mood

      vermillion Member Benefactor

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Neurological damage
      I have to do cleaning, but i can't understand. Normal cleaning is noisy compared to the ultra-sonic method? No?
       
    15. jer

      jer Member

      Tinnitus Since:
      06/2015
      Cause of Tinnitus:
      Acoustic trauma
      Not in my opinion. Maybe it was not called an ultra-sonic cleaning, but something else. In any case, this method gives a VERY high-pitched sound when it cleans your teeth. Normal cleaning with a scaler and normal tools is not very noisy to me. Compared to the ultra-sonic cleaning that is. But it might have to do that I have problems in the very high frequencies and that is what caused my problems.

      Just feel comfortable to say no to the dentist if you can't deal with something. I guess that is the biggest thing I wanted to say.
       
    16. jer

      jer Member

      Tinnitus Since:
      06/2015
      Cause of Tinnitus:
      Acoustic trauma
      Even though it is out of production. Can I still get it somewhere?
       
      • Good Question Good Question x 1
    17. grate_biff
      Alone

      grate_biff Member Benefactor

      Location:
      Oslo, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma, benzo/mirtazapine withdrawal, or combo!
      You could bye some off of me, but I wouldn´t recomend it!
       
    18. jer

      jer Member

      Tinnitus Since:
      06/2015
      Cause of Tinnitus:
      Acoustic trauma
      Why not? What where your personal experiences that turned you off of it?
       
    19. grate_biff
      Alone

      grate_biff Member Benefactor

      Location:
      Oslo, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma, benzo/mirtazapine withdrawal, or combo!
      Havn´t dared to take it yet. Bc of anecdotal stories of vision problems.
       
    20. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      Have a read of the thread, its a very very dangerous drug with potential permanent side effects.
       
    21. Alue
      No Mood

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Yeah, it's not something to be popped like candy either...
       
    22. 3ri0w

      3ri0w Member

      Tinnitus Since:
      2012, H 2016, 12/2018(?)
      Cause of Tinnitus:
      loud noises, ringing came back 12/2018 after 1year of silent
      Soooo the production of Retigabine has been discontinued since June 2017. What's up in the medical field? Has there been news for something (RL_81, 1OP-2198, SF00034, what else) to replace it with fewer side effects etc
       
    23. Michael Larsen
      Surfing

      Michael Larsen Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      Noice
      XEN1101: Phase 2 development beginning in mid-2018. Could perhaps help us.
      Hopefully with fewer side effects
       
      • Like Like x 1
    24. 3ri0w

      3ri0w Member

      Tinnitus Since:
      2012, H 2016, 12/2018(?)
      Cause of Tinnitus:
      loud noises, ringing came back 12/2018 after 1year of silent
      Yea hopefully :p Thanks for the tip! Looks like it has a new name 1OP-2198 = XEN1101 :p Something to look forward to
       
    25. Michael Larsen
      Surfing

      Michael Larsen Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      Noice
      Yes, definitely. I hope the side effects not will be Visual Snow and Floaters.
       
      • Agree Agree x 1
    26. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      • Agree Agree x 1
    27. teacher34

      teacher34 Member

      Location:
      Texas
      Tinnitus Since:
      7/2017
      Cause of Tinnitus:
      Unsure
      I would be happy to (seriously). Please message me if you'd like to.
       
    28. teacher34

      teacher34 Member

      Location:
      Texas
      Tinnitus Since:
      7/2017
      Cause of Tinnitus:
      Unsure
      I would be happy to take or buy your boxes.
       
    29. Philemon

      Philemon Member Benefactor

      Location:
      France/Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Mild NIHL
      Hi Grate_Biff !

      Hope you're doing well. I've just read you may still have some Trobalt at home ;-)

      This drugs seems to work well again for me (I stopped for quite a long time because of tolerance I build, but now it seems to have good effects on my T again, see my 1st posts on the user experiences thread to get an idea), with no side effects in sight (I regularly do kidney, liver and eyes tests about this and it all comes clear each times, and I never feel bad things with this medicine, just a bit of sedation, but very mild)

      So my question is : do you still have some Trobalt, and would you be willing to sell it to me ? (I live in France by the way)

      Any answer appreciated ! and hope all the best for you (habituation of whatever works)


      Thanks !


      (This is also a call to anyone who still have Trobalt at home but won't use it, don't hesitate to get in touch with me ;))
       
    30. Philemon

      Philemon Member Benefactor

      Location:
      France/Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Mild NIHL
      Pleasure_Paulie The same for me, if you still have some boxes, I would be happy to buy some from you (as I seem to tolerate the drug very well, and do all the test to assure that, see my last post). But if you're ok, I should think about the best way to "design" the package in a way that it could pass the customs, for example hiding it in some or many gifts (that I will pay of course), with a greeting card or wish card(the same for grate_biff)
      Many thanks for answering !
       

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