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.

WARNING

DO NOT TAKE THIS MEDICATION unless you have been prescribed it and checked out by a doctor. Retigabine can be very dangerous.
tinnitus forum
    1. cqman
      Pooptoast

      cqman Member

      Tinnitus Since:
      02/2013
      Since I joined this forum and got to know the existence of Retigabine, I very very much wanted to give it a try. Unfortunately it's not available in my country and doctors don't even know about its name.

      There are so many people here and just a few of them tried it. So wanna know why?
       
    2. Karl28
      Wishful

      Karl28 Member

      Location:
      Melbourne
      Tinnitus Since:
      2001 bad since 2015
      Cause of Tinnitus:
      Loud music via headphones
      Hard to get, cost, risk etc....
       
    3. 1MW
      No Mood

      1MW Member

      Cause of Tinnitus:
      ssnhl
      The only serious problem with rtg is does not cure none cured
      Cure is 0/10
       
      • Agree Agree x 1
    4. cqman
      Pooptoast

      cqman Member

      Tinnitus Since:
      02/2013
      If it can lower my T like from 6/10 to 2/10, I'm willing to take the risk. Some people remain lower T after tapering off.
       
      • Agree Agree x 3
    5. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      Not really, no one has reported remaining that low after stopping for a few weeks. It is a hopeful attitude which is good, but I don`t think it as realistic in a general sense.

      We need to see all the data in a compiled and structured paper ... now it is just memories of what someones said so many weeks ago and so on ... it`s hard to get a full clear view.
       
      • Agree Agree x 7
    6. Afeef
      Cowboy

      Afeef Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Loud noise
    7. cqman
      Pooptoast

      cqman Member

      Tinnitus Since:
      02/2013
      @locoyeti has remained low after stopping.
       
    8. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      yes, it`s true he was very happy with the results ... so just shows we need to gather this info structured so we can have a clear view of the possibilities and such ...
       
      • Agree Agree x 1
    9. cqman
      Pooptoast

      cqman Member

      Tinnitus Since:
      02/2013
      • Like Like x 1
    10. Afeef
      Cowboy

      Afeef Member

      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Loud noise
      @cqman happy to be of any help!


      Wish u a healthy life bro!






      Afeef
       
      • Hug Hug x 1
    11. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      I did actually get a prescription at one point, but never took it.

      Except when this is really bothering me, taking obscure, very new, drugs seems like a bad idea. I have had bad effects from other drugs in the past that made tinnitus look like not that big a deal.

      Once there's more data on how this works for tinnitus, and whether or not trobalt users go on to have worse tinnitus or other problems 5,10,20 years down the line, I might be more enthusiastic.
       
      • Agree Agree x 1
    12. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      If your tinnitus is not bad then you will not try. it it is devastating you would elephants shit, a sausage of 10kg nicely in a plate with fork and knife to get better and survive. As long as tinnitus is not problematic you can chose, when pain come like water over a nose or worse over a head as said elephant sausage one would eat just to get better.

      There is no cure , and maybe it will not be in 30 years. Trobalt was not meant as cure for tinnitus, but to relief for tinnitus. There is no cure for epilepsy but something to control it, there is no cure for HIV but something to control it and menage, nor there is cure osteoporosis, lyme disease, IBM, lets make a list, and those will probably never be found. Give me cure for neurological disorders as tinnitus is one of them,

      maybe fibromyalgia, no?
      restless legs syndrome? no???
      epilepsy no? stroke no
      alzheimer's no?
      MS multiple sclerosis? no?
      essential tremors, resting tremor?
      Motor neuron disease?
      autoimmune???

      there will never be cure for tinnitus except what doc jeanmonod does, but there can be maybe we hope remedy for tinnitus, and of them is Trobalt?

      I agree with @cqman , @nills

      who want to try trobalt.
       
    13. Telis

      Telis Member Hall of Fame

      Location:
      Calgary
      Tinnitus Since:
      11/2013
      I don't try becasue I know it's not good for me, same reason I don't shoot junk into my arms or smoke crack to cope with T. I'm sure these things are great for some relief for a period of time and then what? You get relief for some months and then you could be worse off than before. If I was sure I would off myself within a year I would take anything, however im not quite sure about that yet so there has to be some consideration for the future even if I am desperate for relief right now. And believe me I'm desperate, I just don't think taking dangerous drugs are the solution unless I've made my mind up and am ready to destroy my body and mind. I might experiment with it if it were in front of me but I surely wouldn't take this chemical every day. What is a few months of relief when you may have to suffer for another 4o years, it's nothing at all.
       
      • Agree Agree x 2
    14. Xorthian
      Balanced

      Xorthian Member Benefactor

      Location:
      Poland
      Tinnitus Since:
      Initial 2012. Massive spike 4/2015
      Cause of Tinnitus:
      Noisey Lifestyle. Increase from infection.
      I have hope for autifony drug. I hope it will have less serious side effects and I hope it will come out in next 5 years.

      I'm afraid that taking RTG might rewire my brain into some specific way that will make autifony med less or even not effective.

      Last thing I want now is to fuck up so badly I wont have any chance for recovery because I took some drug that changed my brain functions.

      It's enough that past 3 weeks have been total nightmare, I'm starting to cope with it slowly. Today I have new loud tonal sound in my head after I took nasonex and I dont know if its because of it, or because antibiotics are going away from my body after 10 days or some other mystical reason. Or maybe this is sign of me actually going to be better (so I first get subjectively worse). Or maybe because I touched my ears way too many times in past 3 weeks and some infection is starting to go on in my body once again.

      Taking RTG could make me even more paranoid and thats something I dont want.
      There is higher chance I will start to massively stock pot and smoke it 24/7 to calm down than taking any kind of drug right now.
       
      • Hug Hug x 1
      • Creative Creative x 1
    15. Geo

      Geo Member Benefactor

      Location:
      California
      Tinnitus Since:
      11/2012
      I donr care for a full recovery as a lot of diseases dont but at least some relife will be nice..
       
      • Hug Hug x 2
    16. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      A lot of people on this forum are absolutely convinced that retigabine (a drug that has been studied since 1996, has been in a ton of clinical trials and has been approved by both the FDA and its European equivalent) is manufactured by the satan himself.

      Sure, it might be worse than crack, it might make one grow fifty testicles in the next 20 years, but it just might give you some relief and maybe improve your (obviously lacking) quality of life.

      @Telis, I'm not saying that you aren't making a valid point. I'm saying that a short RTG trial will give you a clear indication whether it has any effect for you and will most probably be totally harmless.
       
      • Agree Agree x 1
      • Funny Funny x 1
      • Winner Winner x 1
      • Informative Informative x 1
    17. Xorthian
      Balanced

      Xorthian Member Benefactor

      Location:
      Poland
      Tinnitus Since:
      Initial 2012. Massive spike 4/2015
      Cause of Tinnitus:
      Noisey Lifestyle. Increase from infection.
      To be fair I considered RTG short term just for the psychological side effects. It would be nice to get relaxed and not give a damn about anything for a couple of hours.

      On the other hand I consider almost all drugs right now as if they were manufactured by Satan himself. There are lot of people that had increase or even got T from antibiotics right.
       
      • Agree Agree x 1
      • Optimistic Optimistic x 1
    18. Geo

      Geo Member Benefactor

      Location:
      California
      Tinnitus Since:
      11/2012
      You have to make sure it isnt a otoxic drug..
       
    19. Xorthian
      Balanced

      Xorthian Member Benefactor

      Location:
      Poland
      Tinnitus Since:
      Initial 2012. Massive spike 4/2015
      Cause of Tinnitus:
      Noisey Lifestyle. Increase from infection.
      Right now I know that.
      3 weeks ago I didnt knew drugs can even damage your hearing at all. There is also case of drugs that can be ototoxic in 1% of cases but mostly aren't (like clarithomycinum wchich is happily prescribed by ENTS all over the world - where if you have issues with kidneys, plain bad luck or take high dosage it may irreversibly cause SHL + Tinnitus)

      I would also like to mention 20 years ago I had major renal failure that was treated for 2 years in hospitals (I was 7 at that time). I got better but almost every drug in the world can (and is) damaging to kidneys. Yet people will happily take those meds without second thought of kidneys. Same goes for ototoxicity.
       
    20. Geo

      Geo Member Benefactor

      Location:
      California
      Tinnitus Since:
      11/2012
      I also didnt know about that but even ents who dont know squat perscribe u drugs that can be harmful to someones t.. Ive gotten increased volume from taking ibuprofen for weeks due to a tear in my elbow and didnt know it was bad for T...
       
      • Agree Agree x 1
    21. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      well 0/10 you will not see in your life time

      Doctor know about it, but they say benefit outweighs risk. And well off all tith t just 3% have a problem real, so we are nothing, not important, not interesting, and then so little population get draft away by TRT specialist who put money into lobbies so medicine would not be developed because they would lose their income.
       
    22. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      I don't think Auris Medical, Autifony or Otonomy give a rats ass about the TRT lobby, which probably isn't very strong. We can only hope they make TRT truly obsolete.
       
      • Agree Agree x 2
    23. Ricky81
      Worried

      Ricky81 Member Benefactor

      Tinnitus Since:
      July 14, 2014
      Cause of Tinnitus:
      Assault/Contusion/Ear Infection
      I'm currently taking Topamax to control intracranial pressure and headaces due to head Trauma almost year ago.. I hate taking meds.

      All meds come with some long term side effects.

      No one knows if you take a particular med Trobalt etc..for 2 years what effect if will have on your kidneys, liver, etc etc...10 years down the road. YOU are the human trial.
       
    24. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      well no one cay us that strawberries (silicates inside) can raise tinnitus for a weeks if you eat them too much.

      But you surely read a list of those 200. All plastic/synthetic antibiotic attack bacteria and nerves system with same strength.
       
    25. amandine

      amandine Member

      Tinnitus Since:
      july 2014
      well it seems to me that it is the only thing we have so i am going to drive to spain and get some i hope and i hope to try it without experiencing problems - seems some have problems and others dont with this drug
      Danny Boy tried it and said it was fantastic and now does not stop to take it even tho his T is low low but he reported on public forum here that it is addictive drug and he has problems stopping to take it - but before that he said is great drug and now he says is dangerous drug so it is very confusing when people using it change their opinions on here
       
      • Helpful Helpful x 1
    26. uae96
      Thinking

      uae96 Member

      Location:
      Dubai, UAE
      Tinnitus Since:
      6/14/2015
      Cause of Tinnitus:
      Noise
      I think it's a dangerous drug , banned in many countries
       
      • Funny Funny x 2
    27. Ricky81
      Worried

      Ricky81 Member Benefactor

      Tinnitus Since:
      July 14, 2014
      Cause of Tinnitus:
      Assault/Contusion/Ear Infection
      Funny how govt. Can decide to ban a drug completely from patients while collecting tax money instead of letting doctors decide what's best for their patient.. or even better letting a patient decide what's best for him or her to live their one and only life how they choose
       
      • Agree Agree x 1
    28. Evian

      Evian Member

      Tinnitus Since:
      02/2015
      I just know if I hoped on easyjet to spain bought some etc I would be stopped at customs and have it confiscated
       
    29. derpytia
      Pooptoast

      derpytia Member

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      Govt is corrupt as usual but then there's the other side saying that some doctors are just as corrupt. In fact a lot of doctors I meet these days both old and new either A) don't care about their patients and only see them as a body to play around with or their next paycheck or B) they haven't kept up with their studies and training like they are supposed to and can malpractice (which seems to be the case a lot these days unfortunately) and end up causing more harm.
       
      • Agree Agree x 1
    30. derpytia
      Pooptoast

      derpytia Member

      Location:
      Rescue, California
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Hearing loss / ETD
      From what I found out:

      "Salicylates also occur naturally in foods such as almonds, apples, apricots, blackberries, boysenberries, cherries, cucumbers and pickles, currants, dewberries, gooseberries, grapes or raisins, nectarines, oranges, peaches, plums or prunes, raspberries, strawberries, and tomatoes."

      The hell are we supposed to eat then??? :(
       
      • Agree Agree x 1

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