Retigabine (Trobalt, Potiga) to Be Discontinued

Discussion in 'Research News' started by Danny Boy, Sep 29, 2016.

    1. Alue
      No Mood

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Did you watch the video?
       
    2. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      destroy all creatures. they cannot be regenerated.
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      yes, and I've previously read all the whitepapers he cites. It's interesting, for sure, but I think we're likely to be looking at heterogeneous sets of patients, multiple etiologies with more or less shared symptoms when you slice the demographics in various ways.

      The presenter has more or less the same set of symptoms and drawn the same conclusions about them that I have in the last two decades, haha. A switch got flipped somewhere. I would not say that my condition has been progressive; the visual snow is the same as it was in 1999, and the tinnitus only got worse following a noise trauma.

      Yoga and meditation are uniformly so helpful to a significant number of high-distress patients with various conditions that there is clearly a lot of neurological stuff going on under the hood, and while there is an increasing amount of scientific interest (and therefore data), we're still in the very early phases of understanding how these things work and therefore what protocols should be indicated for what condition... and, as they are palliative and not curative, there will no doubt always be a large peanut gallery of naysayers.
       
    3. Alue
      No Mood

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I know, it's similar to what I've been thinking for some cases of tinnitus, especially ones that arise for seemingly no reason (no severe acoustic trauma, no ototoxic medications, etc.). My point being he started having a central sensitization disorder and started seeing visual snow, floaters, around the same time his tinnitus begun. Whatever filters out noise in his sensory system went haywire. Now, you are correct, floaters are a very physical thing, but maybe some people have a mild case of floaters but never really notice them before.

      I do think what Kyxwz was saying in the other thread could be right. That trobalt caused his floaters because his eyes suffered an immediate dehydration process by increasing the drug too fast. It does give me dry eyes too, for which I've been taking eye drops and gel eye drops (I don't know if that helps, though).

      I have been thinking that I should taper off, as it does give me relief, but I think it's only temporary. It's hard, though. Because on it I feel mostly normal and off it I just want to die.
       
    4. ReyKalinic

      ReyKalinic Member

      Location:
      Roma
      Tinnitus Since:
      2000
      Cause of Tinnitus:
      Triggered by TN 2004/05
      hi all:

      I was wrong about eye Floaters. apologize. the eyesnow seem to be most tinnitus related.

      my heart go to people that was in despair took trobalt and get others health issues. I suffer first of trigeminal Nevralgia recurrent after rizotomy. it's definitely a central problem. I feel discouraged a lot because my first medication was tegretol, a drug of last century and now on trileptal 1200mg. If the research did nothing for TN suffers I'm disappointed about all the false hope or doubtful research about those infamous sounds
       
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    5. dj_newark

      dj_newark Member Benefactor

      Tinnitus Since:
      1990
      I rolled on MDMA again last weekend. It was a week earlier than I had planned. You're supposed to wait a month (at least, ideally 1-3 months) between rolls due to the inevitable serotonin depletion.

      But I was having a moment of weakness with my tinnitus last weekend. And I was like "eh fuck it!" And dug out my bag of MDMA crystal.

      I intended on a bigger dose. And I took an even bigger dose than recommended. About 150mg is right for my body weight. With an added booster dose of about 100mg about an hour and a half in.

      But instead I took a 200mg rock and did another 100mg about an hour and a half in.

      About 20 minutes into the experience I started feeling warm and a little light headed. And then I'm like "oh. It's starting."

      So about a 1/2 hour in, I notice my tinnitus getting louder. The opposite effect of what I was after! However I realized it was an effect of the drug and that helped me ride it out.

      But as I started approaching about a hour in it starts building the intensity of my T. And then it kept building. And building. And BUILDING!!! Until I felt my head was about to literally vibrate apart and then explode.

      But then....I felt this intensely comforting warmness envelop my body. And in a whooshing sensation the tinnitus receded to the back ground. It was still there and still intense. But the impressive thing is, it was no longer bothering me.

      I was accepting the sensation that always bothers and challenges me. My tinnitus is an extremely hard, abrasive sensation that's always there and leaves me depleted and stressed out. But at this point in the experience, it wasn't bothering me in the least.

      Instead of tinnitus being a "hard" experience that was difficult to accept. It turned into a "soft" experience, despite the way it sounded. And was completely 100% acceptable. It was absolutely okay to be experiencing the tinnitus at that point.

      What I learned about my tinnitus in this session (and to a lesser extent at the previous session at 1/2 this dose) was the extreme pervasiveness of this disorder throughout my brain. Literally every corner of my mind that ai could visit was simply bathed in sound. It was everywhere. There was no escape. I realized I would probabably die this way.

      But the most important realization I had during all this, was that it was ok and something that was easy to accept. All was well with the world at that point.

      That was at about an hour to an hour and a half in. So at 1.5 hours like I said I took the booster dose. Another 100mg. And at about the 2 hour mark, my perception of the tinnitus was that it was actually getting quieter.

      And at about 3 hours in, the tinnitus, while not entirely gone, was so subsided at that point I had to focus on it to even notice. For a while, it was almost entirely gone. An amazing sensation that I wish I had all the time!!!

      Then at about 4 hours the tinnitus started coming back. At 5 it was at the usual levels (in other words, pretty bad). But I was still accepting it, and doing better than usual.

      At that stage, due to the serotonin depletion I was experiencing, I started "gurning". Which is a term MDMA users have for when your mouth and jaw starts going slightly out of control because of seratonin depletion. My jaw (as does happen with this drug) started involuntarily extending out. Like I had an extremely protruding jaw.

      And my teeth started chattering. It was a little distressing I guess. But again, MDMA has a way of making everything feel OK.

      At about 4 am, I fell asleep. I rolled late, starting around 8pm. And I fell asleep, jaw protruding, teeth chattering and tinnitus absolutely POUNDING. But feeling absolutely ok about it.

      It's an absolutely wonderful experience, overall, that I plan on repeating every 1-3 months. And overall, I'd highly favor MDMA over Trobalt a million to one. No regrets at all over the MDMA.
       
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    6. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      I used it for more than 2 years and I know it helps me contain my tinnitus, specially when it becomes vicious, and in the morning so then it lasts over a day...
       
    7. Paul10

      Paul10 Member

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Stress
      Don't suppose you'd be up for a trade? (is that legal?)
       
    8. grate_biff
      Alone

      grate_biff Member Benefactor

      Location:
      Moss, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma and or benzo withdrawal
      What do you mean?
       
    9. teacher34

      teacher34 Member

      Location:
      Texas
      Tinnitus Since:
      7/2017
      Cause of Tinnitus:
      Prescription megadose ibuprofin combined with noise exposure
      If you would like to share or sell any of those boxes, I would greatly appreciate it.
       
    10. Michael Larsen
      Surfing

      Michael Larsen Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      Noice
      So right now our best hope is XEN1101/1OP-2198, as a replacement for trobalt?

      If Phase 2 development beginning by mid-2018.
       
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    11. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      Sounds like a blast
       
    12. Amiel

      Amiel Member

      Tinnitus Since:
      1995
      Cause of Tinnitus:
      noise
      Why is it that all the good drugs can't be taken regularly!
       
    13. David077
      Creative

      David077 Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      stress, benzo/clonozepam + clonidine, maybe infection
      I asked my doctor if there is a drug with a similar action of Retigabine, so he suggested me Lamotrigine that also can reduce the rate of brain activity. What are you thinking about this?
       
    14. grate_biff
      Alone

      grate_biff Member Benefactor

      Location:
      Moss, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma and or benzo withdrawal
      This is my post of 25.mai 2017 in another tread:

      I´ve started Lamotrigine two weeks ago and have only reached 50 mg a day. I have found a very informative site about this drug(see link). I´m taking it mainly to try and calm down my CNS by its glutamergic anti-agonist properties, as I am going through extreme protracted benzo and AD withdrawls(2,5 years in and still struggling with tremors, anxiety and a CNS in high gear along with T and H)

      Lamotrigine works by many different channels and according to this site, Potassium channels is one of them, at least it "appears" to be:

      "In addition to blocking various voltage-gated sodium and calcium channels, lamotrigine appears to modulate voltage-gated potassium channels."

      http://mentalhealthdaily.com/2016/10/04/lamictal-lamotrigine-for-anxiety-disorders/

      I can only hope if it calms down my CNS and that it will help alleviate my T and H as well.


      Unfortunately i did not do much for me, but I quit two weeks after reaching therapeutic dose of 200 mg.
      I had high hopes, when I tried it. It changed the life of my friend suffering from bipolar disorder.
      Hopefully you will benefit from it.
      I think some have..
       
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    15. David077
      Creative

      David077 Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      stress, benzo/clonozepam + clonidine, maybe infection
      Do you mean CNS - Central nervous system? What are symptoms of your CMS?
       
    16. grate_biff
      Alone

      grate_biff Member Benefactor

      Location:
      Moss, Norway
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma and or benzo withdrawal
      Yes- All symptoms linked to stress.
       
    17. AUTHOR
      AUTHOR
      Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      I've tried both and it's not like trobalt. Won't give you visual snow though.
       
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    18. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      Just a potential rash! :p
       
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    19. David077
      Creative

      David077 Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      stress, benzo/clonozepam + clonidine, maybe infection
      I think I also had CNS symptoms that was linked to stress, I noticed what was the triggers of the stress that would worsen the symptoms and learned how to ignore them, then my symptoms disappeared.
       
    20. LetyO

      LetyO Member

      Location:
      Santa Ynez, California
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Anxiety/depression/medications
      Does anyone have Trobalt? I couldn’t obtain it anymore since last summer. I assume it cannot be compounded.
       
    21. Matchbox

      Matchbox Member

      Location:
      BC Canada
      Tinnitus Since:
      August 2020
      Cause of Tinnitus:
      Noise Induced (Earbuds , Prednisone?, Aspirin)
      I would pay anything for Trobalt.

      Just started a Master's focusing on pharmaceutical drugs and development and got hit with the tinnitus. It wasn't too bad but then bad science and medicine made it get exponentially worse.

      If there's any hope of it not being chronic I'd pay handsomely for a chance to be normal so I can continue what I've started. With a new focus on tinnitus. 10000%.
       
    22. tommyd87

      tommyd87 Member

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      tmj music
      I think that they are redesigning Retigabine/Trobalt at the moment to remove the components that make it have nasty side effects.

      There might also be some quite positive benefits on tinnitus from some of the other treatments such as synapse treatments, as well as FX-322.
       
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    23. weab00
      Alone

      weab00 Member Benefactor

      Location:
      depression-ville
      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      noise, whiplash; 08/20 H
      Trobalt caused permanent visual snow for many of the people that used it to quieten their tinnitus.
      Fortunately ➡️ Professor Thanos Tzounopoulos is in the process of making a reformulated version of Retigabine that is 15x more potent and targets tinnitus without the adverse side effects.

      And of course, we have biotechs like Frequency Therapeutics and Otonomy looking to regenerate the cochlea, as well as Sound Pharmaceuticals who are in stage 3 clinical trials for a Menière's drug that's been shown to reduce cochlear inflammation and help with tinnitus/hyperacusis in mice.

      My point is that there's help coming very soon, just stick it out for a few more years and I think there's a high chance at least one of these companies will work; FX-322 is already effective for sensorineural hearing loss.
       
    24. serendipity1996
      No Mood

      serendipity1996 Member Podcast Patron

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown but suspect noise-induced
      There is also Xenon Pharmaceuticals which already has various reformulations of Retigabine in clinical trials (in Phase 2) - their drugs are indicated for epilepsy but they recently stated they will be exploring their use in hearing disorders.
       
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    25. tommyd87

      tommyd87 Member

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      tmj music
      FX-322 will help tinnitus too if those anecdotal reports are to be believed and so might some of those other medicines. At this stage I think that as annoying as it is, we will see some relief soon.
       
    26. weab00
      Alone

      weab00 Member Benefactor

      Location:
      depression-ville
      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      noise, whiplash; 08/20 H
      Seems like we are agonizingly close to an effective remedy for tinnitus/hyperacusis. Now it's the waiting game, hoping for 2023.
       
    27. tommyd87

      tommyd87 Member

      Tinnitus Since:
      1999
      Cause of Tinnitus:
      tmj music
      Hopefully 2023, although it could be earlier and/or could be later too. Wait and see.
       
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