Retigabine (Trobalt, Potiga) — General Discussion

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

    1. grate_biff
      Alone

      grate_biff Member Benefactor

      Location:
      Oslo, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma, benzo/mirtazapine withdrawal, or combo!
      Yeah, I see a lot of problems with customs and also some moral issues.
      I'm really sick right now, can barely write this post.
      Just makes me really stressed with "designing" the package and all right now..
       
    2. grate_biff
      Alone

      grate_biff Member Benefactor

      Location:
      Oslo, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma, benzo/mirtazapine withdrawal, or combo!
      I´ll get a bearing of my "stash" and price and get back to you.
      Just got a mail stating my CBD-oil got stopped in customs. Illegal drug to import they say.
      Its just so depressing.
       
    3. Philemon

      Philemon Member Benefactor

      Location:
      France/Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Mild NIHL
      Ok grate_biff I understand your issues right now, of course if what I am asking you is too demanding for you right now, juste forget about it man ... maybe we'll do it later, maybe never ... whatever happens regarding this is all fine for me, you're the one to choose (and maybe it's too much risk for what it is, transitory release, I'm quite sure I'll build a tolerance to Trobalt again) ...anyway if you want to sell to me in the future, you can inbox me, no problem
      And of course, I'll deeply wish you'll feel better soon


      Pleasure_Paulie You're quite silent in this, maybe you've already sell all your boxes ;) . ... If you could just tell me about you think of all of this, that we'll be nice from you ... but anyway, you do what please you and this is deeply justified

      Anyway, I wish you, and also to all the other member of this forum, all the best
       
    4. teacher34

      teacher34 Member

      Location:
      Texas
      Tinnitus Since:
      7/2017
      Cause of Tinnitus:
      Unsure
      I would like to buy some retigabine from you, as well, and would be happy to pay upfront.
       
    5. Berik
      Rebellious

      Berik Member Benefactor

      Tinnitus Since:
      11/2016
      Cause of Tinnitus:
      Unknown
      Is CBD oil not allowed in Norway?
      Started it again recently and must say I notice a lot of benefit from it. Makes me calm, takes away a lot of the anxiety and stress. For sleep, now and then I take the TBC oil, though this is illegal in the Netherlands to. Sleep like a child, just don't overdo, because you wake up stoned :whistle:.
       
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    6. grate_biff
      Alone

      grate_biff Member Benefactor

      Location:
      Oslo, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma, benzo/mirtazapine withdrawal, or combo!
      I think it is because CBD oil is now classified as medicine in the UK instead of formerly classified as a supplement.
      and medicine is not allowed to import:banghead:.
       
    7. Twitch

      Twitch Member

      Location:
      Earth
      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Unknown
      Those who still have or take Trobalt and are experiencing Trobalt induced visual floaters, I found that soaking 20 or so Saffron strands in hot milk/tea for 5 minutes and then drinking and consuming all the Saffron got rid of floaters.
       
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    8. vermillion
      No Mood

      vermillion Member Benefactor

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Neurological damage
      Can somebody summarise success stories with Trobalt if it's possible. I remember Danny Boy. Is there a window period for this drug?
       
    9. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      Not to be negative, but knowing success stories won't help as the drug has been discontinued :)
       
    10. Stakovic

      Stakovic Member

      Tinnitus Since:
      1998
      Cause of Tinnitus:
      Unknown
      This drug from 2015 is expired but still giving me relief. :) I took a big risk taking it. Potassium channel has a great potential to treat tinnitus.
       

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    11. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      Please elaborate, how much relief for example from 9/10 to 5/10 and how long does it last? Great to hear!
       
    12. Stakovic

      Stakovic Member

      Tinnitus Since:
      1998
      Cause of Tinnitus:
      Unknown
      I took only half of pill, the noise reduced by half and vibration of head disappeared completely and this is a huge relief for me.
      Unfortunately the noise started back after almost one hour.
       
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    13. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      Let's hope for this more 'potent' and selective drug to comes to the market, hopefully get a bit longer relief with any luck.
       
    14. Emanuel Lourenco
      Depressed

      Emanuel Lourenco Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Noise exposure, repeatedly worsened by the great mystery T
      Hey, I am getting worse and worse, my T is horrible i don't know how long i can take this anymore so I am just trying to get hand on the last resource stuff... I heard that some people had success by taking trobalt, I do know that it has been discontinued though... Does anyone have any source on how to get it? I don't see any more options at this point... It is either trying these last resource medications or suicide...
       
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    15. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Hi @Emanuel Lourenco

      I am sorry to hear the tinnitus is getting worse for you. I have corresponded with you a few times in the passed. Tinnitus usually increases for a reason. Have you been using headphones even at low volume? Listening to loud music in the car? Going to clubs concerts? Have you been going to the cinema recently? Do you play computer games use an Xbox wearing headphones?

      Since it's possible your tinnitus was originally caused by "noise exposure". If it gets worse the usual cause is loud Sounds that you have been exposed to. As I've said, tinnitus usually gets worse for a reason.

      Michael
       
    16. Emanuel Lourenco
      Depressed

      Emanuel Lourenco Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Noise exposure, repeatedly worsened by the great mystery T
      I haven't been doing any of those things... my T has just remained in the latest spike a few months ago and never went down so I just can't get used to this new level and I just want it to end

      Since we last spoke I have tried everything I can to not make the T worse I just wanted it to get better and its not... it never gets better... once it gets worse it stays that way, and it as progressively been getting worse and I am just tired
       
    17. MBH

      MBH Member

      Location:
      Upstate NY
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Overloaded stress
      If the medical world knows it works then why don't they make it work, they rather dangle it in suffers faces. It amazes me that they don't try. Why don't they do a study on the drug or remix with something else. It can really help suffer of this disease. It amazes me that street drugs have more respect.
       
    18. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Okay @Emanuel Lourenco Do you remember what caused the spike? Please try to remember thanks.
       
    19. Dana
      Busy

      Dana Member Benefactor

      Location:
      Bucharest, Romania
      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      Or trying Rivotril made by Roche. Can be ordered online, but i think you need a prescription. Way easier to obtain and way safer than Trobalt, which gives visual snow/visual floaters for life and other problems, and i heard from people that took trobalt that it only gives you a break: T resumes after you stop it, and you cannot take it forever. Rivotril can be taken for years.

      Problem with Rivotril is that, being a benzo, if you do not withdraw from it carefully, using Diazepam, the withdrawal itself can give you T. But after a course of Rivotril, which will lower your T and even give you times with zero T, if you are very careful and respect the protocol of withdrawing for it, when you consider that time for this came, you may get away with witdrawing from it without consequences.
      Better beginning Roche Rivotril (2mg, the most, at night time, because it may make you sleepy) than having such bad T and considering suicide, that's my opinion.
      God help you!

      PS i tried two other brands of Clonazepam, the active substance in Rivotril , from Poland and Cyprus, and they were such crap, made me sick, no benefits, just terrible side effects.
      I have not tried the Klonopin brand of Clonazepam, available in US. May be good or bad, i do not know.
      But as long as there is Clonazepam made by Roche (known as Rivotril), nobody should suffer like that and think about suicide. Only problem with Rivotril is that is forbidden for people with liver problems. I had liver problems before T, still took Rivotril, and prolonged my life with 8 years. I do not even want to talk about how bad i was with my T before learning about Rivotril (from 2 ENTs) (it was getting worse and worse, without any exposure to "loud sounds", pure hell, not to mention the few periods of times when i went through another hell, named "hyperacusis").
      Good luck!
       
    20. shasta0863

      shasta0863 Member

      Tinnitus Since:
      11/2007
      Does it only help with T like yours, not from noise (I'm assuming since you said it got worse without loud noise?) induced T? Did it help with H at all?

      Also, does Rivotril potentially give you T or only if you cold turkey off it? Scares me to think about taking something that makes something already bad, possibly worse just by getting off it.
       
    21. Dana
      Busy

      Dana Member Benefactor

      Location:
      Bucharest, Romania
      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      My T was a synergistic effect of multiple factors, among which there were two acoustic traumas that are hard to imagine/describe. (Sudden huge problems with the sound system during concert). A proof that my T is related to these acoustic traumas is the fact that i have been through several periods of time with hyperacusis, i do not think that a person with H had not problems with noise. The acoustic traumas were so big, i lost my space orientation right afterwards.
      Yes. And with anxiety and wish to die. Not so much with depression, because of the sedative effect.
      And with ear fulness, but i suspect that my ear fullnes problems are due to TMJ and SEH (i suffered a serious head trauma).
       
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    22. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      Is your tinnitus somatic? Have you done TMJ tests? Maybe the fullness in your ear is a very active neck muscle, or some TMJ.
       
    23. Dana
      Busy

      Dana Member Benefactor

      Location:
      Bucharest, Romania
      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      I have somatic T too. (another sound appears while i turn my my head, contract certain muscles, mostly sternocleidomastoid muscle, but also a muscle around my left eye, which is not a symptom unheard of, T may be triggered by the external muscles of the eyeball.
      What tests? Checking whether you can fit more than two fingers in your mouth? Yes, i cannot. I cannot open my mouth wide. When i am stressed my problem with opening the mouth increases, i become almosts like a Rotweiler/Boxer/Bulldog, who remained with clenched jaws after biting on something. My jaws clenching was noticeable during speaking. Argh, the many bad things that stress can do.
      I had such bad somatic tinnitus, that i could not eat an apple, everytime i was trying to bite it/pressure on my upper maxillary, i had very loud T. This problem i fixed with injecting Botox in both my masseters. I intend to inject Botox in my SCM, but because the part of the muscle that gives me problems, the part that inserts on the mastoid bone, is so close to the ear, i am afraid that i may remain deaf.
      TMJ? For sure, and yes, you may be right about a very active neck muscle. After the trauma my head remained tilted on one side for a very long time.
       
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    24. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      I'm sure resolving this will reduce your tinnitus very heavily, but I don't really know how to help you. Hope your tinnitus goes away.
       
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    25. Dana
      Busy

      Dana Member Benefactor

      Location:
      Bucharest, Romania
      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      @threefirefour
      Resolving this how, with botox right behind my ear? I've been thinking about it for years, but i am afraid of the effect of paralyzing the muscles inside my middle ear which means deafness. (Imagine being deaf AND with T, and there are many people like that, poor them)
      After botox in masseters, they shrunk in size forever, changed the shape of my face and not for the better, but at least i can eat an apple and put pressure on my upper teeth without triggering T.
       
    26. Emanuel Lourenco
      Depressed

      Emanuel Lourenco Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Noise exposure, repeatedly worsened by the great mystery T
      I do take rivotril prescribed by a doctor, it used to lower my T but now i notice no difference, I usually take it before goin to sleep i went from 5 to 3 drops because i thought it wouldn't be good for me keep taking them... I also barely feel any effect anymore so I might as well stop taking it instead of increasing the dosage ( 5 drops is around 50 ml according to the box btw)
       
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    27. Emanuel Lourenco
      Depressed

      Emanuel Lourenco Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Noise exposure, repeatedly worsened by the great mystery T
      I'm not really sure because it seems to be something gradually... i just remember it being a lot better a few months ago and now its so noisy and louder... there has been some loud noises encounters that I had throughout the year so it can only mean that is the reason probably... It never went down anyway so... Either way I can't do anything about it... I just do the best I can not to be exposed to loud noises anymore, taking my ear plugs everywhere I go, I also try to stay relaxed but it is pretty difficult considering this is sucking the life out of me at each day... I just feel like i a lost cause really... so.. Not much anyone can do. Life I guess
       
    28. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Try and see a Hearing Therapist for tinnitus treatment and management and what if they can offer any help. I am sorry to hear that the tinnitus is more intrusive. In my experience with noise induced tinnitus. Stress can make it louder or sounds but if you can't pin-point it to anything that relates to these two things, it does make it rather difficult to know what's caused the increase. Try and get a referral to a Hearing Therapist. Don't leave things as they are.

      Best of luck
      Michael
       
    29. Emanuel Lourenco
      Depressed

      Emanuel Lourenco Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Noise exposure, repeatedly worsened by the great mystery T
      I have had a referral I have been there and all they do is talk and tell me what I already know...
       
    30. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      May I ask which country you live? Ask to be referred to a Hearing Therapist who's trained in tinnitus treatment and managements.
       

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