Retigabine (Trobalt, Potiga) to Be Discontinued

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

    1. Rasmus
      Chicken

      Rasmus Member

      Location:
      Denmark
      Tinnitus Since:
      around 02/2015
      Cause of Tinnitus:
      Not sure maybe to much noise
      Well my tinnitus sounds like engine all the time and i have H and reactive tinnitus to. But the more my brain forgets about my T because i stop to think about it the lower it gets next time im thinking about it so its alot easier to stop think about it again. My tinnitus is so loud that even music cant mask it, the only reason i have a easier time is because i stop thinking about it, and then my T will get lower. So i think i know what im talking about :) I my brain have just learn to ignore it over time because i have trained like that ever since i got it. and it took atleast 1 years training for me. and it gets easier with time.
       
    2. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      mine tinnitus went worse for 23 times, and hearing been dropping all this time too, so to say, i had to get used to new variante 23 times, and 23 times in one year is not possible for me, this is something totaly diferent.... and you cant get it, and yes i hear mine in shower or by double buss engine....
       
    3. 3ri0w

      3ri0w Member

      How does Trobalt make it more bearable? The T
       
    4. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      in a way it makes you numb, then it surges your gaba and makes you relaxed, and then it i suppose slow down brain function in area where tinnitus is functioning, but i use retraining therapy a bit with it and it lowers it...

      pre condition is that you did not had a nap, or woke up several times in morning, as then it dont function so well
       
    5. 3ri0w

      3ri0w Member

      Wow the sleep thing sounds weird :p But I understand
       
    6. lambos

      lambos Member

      Location:
      Canada
      Tinnitus Since:
      May 5 2013
      Cause of Tinnitus:
      unsure
      I hear my tinnitus in the shower as well Christian..when my tinnitus started in May of 2013 i could not hear it in the shower however its now much worse and is way above the sound of a shower which which is discouraging as the shower used to be where i could get some relief for the ears and at least for 10 minutes i felt normal again.
       
    7. glynis
      Feminine

      glynis Member Benefactor Hall of Fame Ambassador Team Awareness

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      I know it's a epilepsy drug and like my hubby who was on Mysolin it changed names and made by another company but the drug content was the same .
      We did panic when was told it was going be stopped but he's fine and no problem changing brand...lots of love glynis
       
    8. valeri

      valeri Member Benefactor

      Location:
      Australia
      Tinnitus Since:
      09/2011
      You would be the first one to be able to ignore engine noise.
      Good on you if you can do it.
      How loud is your engine noise and what exactly does it sound like?
       
    9. Rasmus
      Chicken

      Rasmus Member

      Location:
      Denmark
      Tinnitus Since:
      around 02/2015
      Cause of Tinnitus:
      Not sure maybe to much noise
      I dont know how to describe it, but the reason im so good at ignore it, can maybe be because i have trained my brain to ignore things like this since i was a little kid i was born with OCD and other things so i have never had a easy time :/ i have just trained my self to relax almost since i was a little kid. I can always hear my T if i think about it, but i forget all about it when im doing something like playing games (Playing games helps me alot, same with friends) thats why i never hear it i guess. Of course i also have bad days where its pretty hard to ignore it but that does not happen so often anymore. Time heal most of it :)
      Sorry bad english.
       
    10. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      yes i know you told me that, and dentist work too... it is terrible, wasted life
       
    11. valeri

      valeri Member Benefactor

      Location:
      Australia
      Tinnitus Since:
      09/2011
      But how loud it is?
      Do you hear it while driving or watching tv?
      Is it like a deep hum noise that also comes with vibration?
       
    12. Rasmus
      Chicken

      Rasmus Member

      Location:
      Denmark
      Tinnitus Since:
      around 02/2015
      Cause of Tinnitus:
      Not sure maybe to much noise
      I can hear it when im driving and watching TV i have 2 noises, ringing sound and a deep one. The more i think about it the louder it gets, if i dont think about it for a whole day then when i start to think about it it's pretty low sound and easier to forget.


      Edit: The first year i got my tinnitus it would never go away at all, but after some times it got alot easier to master to the point that i can have a normal life again :) even when i can hear it it does not anoy me anymore, atleast most of the time when you have a bad day ofcouse then T is not fun at all, if i have a bad day it will just keep getting worse and worse :/ I just try to stay positive and that have a pretty good effect on me :)
       
    13. dj_newark

      dj_newark Member Benefactor

      Tinnitus Since:
      1990
      Good riddance. Taking this was the biggest mistake of my life!

      All it ever gave me was an extremely unpleasant high, extreme confusion and CONVULSIONS. In the beginning it gave me very mild relief from my tinnitus. Lasting anywhere from 20 minutes to an hour. But the nauseating high, confusion and convulsions would last about an hour and a half. I was taking 600mg based on what I'd read online.

      Eventually the tinnitus relief went away. Leaving me with the nasty high and convulsions.

      Now I've been off it for a good 9 months. Never in my life had I ever experienced convulsions at all, in any way shape or form.

      They started out as my legs flying out of control (after I started taking Potiga). Then my arms started flailing around. Then my entire body started convulsing as if I were having an epileptic seizure. Except I would retain consciousness.

      It would only happen while on the Potiga high that the convulsions that the convulsions would happen.But then I started having them at night, when I wasn't feeling the effects of the medication. Never really during the day, except for minor muscle spasms. Which I also never had before taking Potiga.

      So I stopped taking it. Thinking that the convulsions would subside. But guess what?

      At first the convulsions which started when I was on the potiga did indeed go away when I stopped taking the potiga. But after about three months, the convulsions started coming back. Mildly at first. But then started getttin strong again. Which is more than a little alarming!

      Currently they're not as severe as they were for a while. But what a fucking price to pay for trying to
      treat my severe tinnitus!

      Lately I've been taking to the dark web to start taking drugs like MDMA, LSD, DMT and magic mushrooms.

      And I've NEVER tried anything more than smoking an occasional join when I was in my early 20s. Which was about 20 years ago!! So Potiga was also a "gateway drug" for me.

      I'm now considering the "helium hood" method for treating tinnitus. I think it has a much better chance of working than anything else I've tried!

      And I've tried a LOT besides the Potiga. Including vagus nerve stimulation, deep TMS, sound therapies including hearing aids, soundcure, PAXX-100. Really the helium hood method is seeming like the only viable option.

      FUCK this drug. I'm glad it's being discontinued.
       
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    14. Amber
      Depressed

      Amber Member

      Location:
      Alberta
      Tinnitus Since:
      03/1999
      Why are you taking these drugs? Do they make you feel better?
       
    15. dj_newark

      dj_newark Member Benefactor

      Tinnitus Since:
      1990

      Yes. And to help manage. The only one I've actually done so far is MDMA. It sort of makes me feel better. But I was hoping it would make my tinnitus less loud. That didn't work, but it made me more accepting of the tinnitus.

      The rest are on order. I plan to try microdosing the LSD and magic mushroom (psilocybin) as a way to cope better. I have no idea how well that will work. Same for the DMT.


      I don't plan to trip with the psychedelics like lsd and mushrooms. I'm afraid of how the tinnitus might send me on a bad trip. But in small doses I hope it'll make me work better and be more aware.

      Though ketamine is something I may do on a more regular basis. It's fairly beningn. I'm hoping it can help me feel better. MDMA is extremely benign and pleasant. The only one I've actually tried so far.
       
    16. Leon909
      Ape-like

      Leon909 Member

      Tinnitus Since:
      09/2015
      @dj_newark I also have some weird health issues that appeared a couple of months after taking retigabine. About 2 months after stopping my initially very mild visual snow got much stronger and my light sensitivity too. I went to see an ophthalmologist and she told me that my visual nerve is a bit degenerated. So far it seems to be still OK, but it needs to be monitored.

      About 6 months after stopping RTG my eye lid started twitching, about 20-30 times a day. This lasted for about 4 weeks altogether. I took a lot of vitamin B12 and magnesium for a couple of weeks and started going to bed early, sleeping for ca. 8 hours each day and reducing stress. And now it's gotten much better. Visual snow is the same, but doesn't bother me a lot. Light sensitivity is better and the twitching has gone down to 0-3 times a day.
       
    17. Alue
      No Mood

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      @dj_newark Were you on 600mg a day or 600mg in one dose?

      @Leon909 How did opthalmologist diagnose your visual nerve degeneration?
      It seems strange to me that the symptoms got more severe months after discontinuing the medication.
       
    18. dj_newark

      dj_newark Member Benefactor

      Tinnitus Since:
      1990
      600mg of RTG per day. 200mg 3 x a day.
       
    19. Alue
      No Mood

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Sounds like you had a paradoxical reaction to the drug. How fast did you taper?

      I don't know what to think. I've read through just about the entire Trobalt thread and it seemed to me that most people that got really bad or lasting side effects either took it to very high dosages (900-1200mg/day) or tapered very quickly. I guess that's not entirely true, though.
      Trobalt has really given me some relief with acceptable side effects, but all these horror stories make me think twice. Still, before it I was thinking that I would be better off dead several times a week, but on 600/day my tinnitus is much lower, I'm in a much better mood and the side effects are tolerable.
       
    20. papu
      Amazed

      papu Member Benefactor

      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Acoustic Trauma
      @dj_newark
      I also had side effects but only visual and after a few months of use. I did get floaters which have 90% gone away after leaving trobalt. I never had anything of that sort that you had, confusion yes high and happy yes but no convulsions. I guess everybody react differently i am sorry that you had such a bad experience. In my case while on trobalt after 200 mg it usually went to zero tinnitus sometimes for up to 6 hours . But the again my tinnitus is fairly recent compare to you. I stop taking it because it help me habituate to the point were my eyes became more imortant. I am waiting patiently for rl 86 or sf00034 because i really got the best results for my tinnitus while on trobalt. Now i take stugeron forte 1 a day divided in two doses and clonazepan 0.5 mg each day. I am doing much better this year. My tinnitus is about the same in volume but it does not bother me as much thats what i call habituation.
       
    21. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Cause of Tinnitus:
      karma
      Trobalt is serious shit mmmkay. Utterly bizarre drug.

      @dj_newark did you taper up to that dose over a 6-12 week period? If not, there's your answer. Playing god with your 5-ht2a receptors with darknet drugs is probably a lot more likely to give you worse problems over time than anything else, but godspeed. That said, If MDMA doesn't have a very obvious and significant impact on the tinnitus volume itself, you may be on the wrong track entirely, everyone is wired differently.
       
      • Like Like x 1
    22. Alue
      No Mood

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I agree that Trobalt is a serious drug that is not completely understood. It still scares me a little, I'll be having a full checkup of my eyes soon to make sure there is no effect. But to be honest I see a lot of people taking and recommending serious drugs around here without realizing how serious they can be.
      I see some people taking tricyclics now, and personally tricyclics scare me. They are one of the most dangerous drugs to overdose on. A paramedic I know once told me that patients that OD on tricyclics are typically dead before they even arrive on scene. O' and they have this lovely side effect of suicidal idealization in some people.
       
    23. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Cause of Tinnitus:
      karma
      Well, we shouldn't necessarily conflate overdose risks with risks of usual usage -- pure water will kill you in a nasty way if you drink twenty gallons of it. The ratio between effective dose and LD50 is often cited as a metric of how likely a drug is to cause accidental overdoses, but even that is sort of arbitrary.

      I share your pessimism about tricyclics and think that people in general should be more cautious with how they approach these things, but stuff like Trobalt is in a different category for me for three reasons:
      * has only existed on the market for 7 years; we don't know what the 30 year outcomes are
      * relatively uncommon, so that serious side effect data is even more limited
      * actual FDA black-box warning which isn't given out lightly.

      Tricyclics have been around long enough that we have some grasp on how they work and a better one on what the likely outcomes are; they are certainly some number of sever adverse reactions, but they are extremely rare on the order of 1:10's of thousands of users, probably 1:millions of doses. Just from what we've seen with the bad, limited data we have here, Trobalt appears to cause serious or long-term consequences with more frequency.

      I did experiment with Trobalt briefly, but given my prior history of enthusiastic exploration of little-known compounds, that is more a negative comment about the way I approach chemistry than it is an endorsement of Trobalt. Stuff was bonkers.
       
    24. Alue
      No Mood

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I know what a therapeutic index is. Tryclic antidepressants also have a black box warning. It was an example more than a comparison.

      I agree we have very limited data on Trobalt. I go by what I can find in medical research and clinical trials. To be honest I don't know what to make of the data here on this forum, it's all over the place with side effects that never showed up (or were never reported) in clinical trials. Dosages and titration were all over the place as well, and some were combining it with other drugs.
       
    25. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Cause of Tinnitus:
      karma
      I ran into an as far as I know undocumented variation of a known side effect, and I titrated up slowly and never went much over 300mg/day.
       
    26. Alue
      No Mood

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Was it pelvic pain or something like that? It doesn't surprise me at all that it has undocumented side effects given that it's a systemic 'dirty' drug.

      I don't know what else to say. So far it has given me more positive side effects than negative ones. It allowed me to enjoy a vacation with my family (whom I don't often see) over Christmas. But I do still worry about long term side effects, mainly with my vision. I'll be seeing an ophthalmologist to get a full workup soon to see if it has had any effects.
       
    27. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Cause of Tinnitus:
      karma
      More or less, I think that muscle dysfunction/weakness around my bladder triggered a flare-up in other problems I'd had a decade prior.

      Sounds like reasonable caution. I think the thing that makes it interesting is the theoretical promise of causing long-term positive changes from relatively short-term use. As a purely symptomatic treatment, it seems unsustainable.

      I assume you struck out with benzos before jumping on Trobalt? They are also likely to be not really that sustainable, but lots of people do take them for years or decades... they can be a nightmare, but seem a lot more conventional and safe than any of the AEDs or perhaps most antidepressants.
       
    28. Alue
      No Mood

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Actually no, I haven't tried benzos. I was in the AM101 trials and couldn't be on any medications. I know they are not really sustainable, and getting off them can make tinnitus worse. I started Trobalt with the slim hope that it would have a lasting effect. I recall ATEOS claimed he had a lasting effect after his trial. Although he took it to dosages I'm unwilling to. If it can have a permanent effect like that, it's not surprising at all it could have a permanent negative side effect. If Trobalt had been continued, I wouldn't be surprised if they would have backed the maximum dosage off to 300mg TID.

      I'm not one to take drugs, but this loud tinnitus and hyperacusis (which Trobalt also helps) has wrecked my life. The last time I took a painkiller was when I had kidney stones, in fact I only take painkillers for severe pain, that should tell you something.

      I agree, as a purely symptomatic treatment, it is unsustainable. But few things are...
       
    29. ReyKalinic

      ReyKalinic Member

      Location:
      Roma
      Tinnitus Since:
      2004/05
      Cause of Tinnitus:
      Triggered by TN
      Visual Snow Syndrome and Its Relationship to...


      Floaters eyes now could be related to tinnitus and not only trobalt
       
      • Like Like x 2
    30. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Cause of Tinnitus:
      karma
      floaters and visual snow are different; we might expect visual snow to have a connection to tinnitus, but floaters are literally cellular material floating in the eye, several people seem to have developed this problem directly from Trobalt, and at least one person on here had an ENT who had a whole complex theory about why Trobalt specifically would cause this problem.
       

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