Why Not Give Retigabine (Trobalt, Potiga) a Try?

Discussion in 'Support' started by cqman, Apr 2, 2015.

?

Why haven't you tried Retigabine?

  1. Cannot get a prescription

  2. Unavailable in my country

  3. Afraid of side effects

  4. Too expensive

  5. I do not know what it is

  6. Other reasons (specify in comments)

  7. I have tried it or am currently taking it

Results are only viewable after voting.
    1. Quentino
      Tired

      Quentino Member

      Location:
      France
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Decrease of Hearing i presume.
      And when government let a dangerous drug on the market, everybody say it's a scandal...

      Letting the patient decides... Incredible what we can read on the internet. We are not talking about candies you know?
       
    2. Ricky81
      Worried

      Ricky81 Member Benefactor

      Tinnitus Since:
      July 14, 2014
      Cause of Tinnitus:
      Assault/Contusion/Ear Infection
      Which govt. Is the right govt then?

      Govt A that legalized drug Z, or Govt B that banned drug Z?

      Politicians could care less about you. Lol. They get paid by the millions by powerful lobbies and competing companies that most likely determines what is legal where. Look at the oil industry.
       
    3. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      depends how sensitive you are, but strawberries have it too much silicates :D i was whistling 2 weeks or 3

      there is entire tinnitus diet, i suppose you can find it...

      not too much salt, no fake sugar aspartame, not acid thing like citrus acid, no vinegar, worst is MSG E621 taste enhancer.... there is a list
       
      • Useful Useful x 1
    4. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Christian, I guess you have all tried. I am right?
      So no or little salt, no or only little white sugar, no aspartame, no citrus acid, no MSG.
      But did it change your T?
       
      • Good Question Good Question x 1
    5. amandine

      amandine Member

      Tinnitus Since:
      july 2014
      and this is the point and well asked Telis - i dont believe it makes any difference to it whatsoever..............has anyone done a study yet and found out that if they stop eating this or that then their T goes down? Or do we carry on rubbing the almonds on our heads? Some of the suggestions that I have seen on this forum make me weep with incredulity as normally educated people come up with the most insane ideas to rid themselves of this T noise........so desperate are we that some folks here are now rubbing almonds into their scalps......madness!!
       
      • Funny Funny x 2
    6. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Some report that changes on their diet, taking supplements, avoiding this or that has an influence on their T. Others report that it has no influence for them. I have read somewhere that there are around 400 known causes for T. This makes it so difficult finding a solution. I doubt there will ever be a "one fits all" solution. So you can spend thousands and thousands of dollars for everything and get nothing.
      In my case I am 100% sure it is a brain issue. Never had an ear issue in my life and my T was caused by stress.
      A benzo calms down my T. So I am sure it is those hyperactivity of neurons in my brain. But what do we know? :confused:
       
      • Agree Agree x 2
      • Hug Hug x 1
    7. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Well, I'd rather try Perampanel over trobalt. It's a safer drug and is made for 12 years old and up. And plus, nobody has tried it for tinnitus, so makes it extra exciting to see if it works.
       
    8. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      i have it it try and now i have too many boxes home and dont know what to do with it, i was scared there will none on market so doctor game a stash.
       
    9. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Hi All,
      I live in England and as far as I'm aware Trobalt is not offered.
      It just seems like antibiotics and anti depressants and anxiety meds .maskers or hearing aids,CBT and TRT.... not sure if we are behind the times from other countries ..... great to hear what you think ........lots of love glynis
       
    10. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months

      Where u from when it is so hard to get?
       
    11. Kyxwz
      No Mood

      Kyxwz Member

      Tinnitus Since:
      x
      Cause of Tinnitus:
      x
      I want try it in next future. If i find something that low my T i can use it just for 1 month in a year and for the rest i try to copy with it but with a gun to stop the sound when i want.
       
    12. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      well i use it, in morning 200-300mg to kill my tinitus
      or in evening 200mg to end it and make my sleep better, like full 10h

      I stocked myself, and I will be willing to sell it for same price as it is in sweden, to some friends... who are in relly big problems
       
    13. Kelvin

      Kelvin Member Benefactor

      Location:
      UK
      Tinnitus Since:
      June 2016
      Cause of Tinnitus:
      Dental Work
      Retigabine ( Trobalt ) won't be offered in UK it is being withdrawn due to side effects.

      https://www.gov.uk/drug-safety-upda...last-line-use-and-new-monitoring-requirements

      https://assets.publishing.service.gov.uk/media/57fe4b6640f0b6713800000c/Trobalt_letter.pdf
       
    14. Taviap14

      Taviap14 Member

      Tinnitus Since:
      Jan 11 2017
      Cause of Tinnitus:
      Unkown
      Is it even given in the us
       
    15. Paul10

      Paul10 Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Stress
      I live in a country with universal healthcare and it would be very difficult to get a doctor to proscribe this for T. Would I try it if I was in America? Sure.
       
    16. Alue
      No Mood

      Alue Member Hall of Fame

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I have been giving it a trial. I got a full eye workup with a ophthalmologist that knew I was going to take it. So far no bad side effects.

      I was on 200 tid and it works pretty well providing I get good sleep. I since have backed off the dosage to 100mg after breakfast, 100mg after luch, and 200mg after dinner. It doesn't completely eliminate my T, but it makes it more tolerable.

      I had an eye checkup since starting and I have another one soon.


      Taken directly from your link: "GSK intends to discontinue the product permanently due to the very limited usage of the medicine and the continued decline in new patient initiation." They didn't say it was being withdrawn due to side effects. I'm not saying Trobalt is safe, it can have scary side effects.
       
    17. Kelvin

      Kelvin Member Benefactor

      Location:
      UK
      Tinnitus Since:
      June 2016
      Cause of Tinnitus:
      Dental Work
      True...but thats the Company link ! The other link is the UK Gov Drug Safety website link. This suggests use as a last resort due to eye and skin pigment changes in an unacceptably high number of patients. As usual its probably an overreaction and if it helps people with T then maybe you just balance the risk. Life is a risk. Just wanted to put it out there in case UK suffers wondered why there GP won't prescribe. Wishing you all you lovely folk a peaceful day X
       
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