Retigabine (Trobalt, Potiga) — General Discussion

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

    1. Alue
      No Mood

      Alue Member Hall of Fame

      Tinnitus Since:
      01/2016
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      Acoustic Trauma
      That's why I ask how Trobalt causes floaters. I know it can effect the eyes but I don't see how it would cause physical floaters.

      Maybe what is being described isn't actually floaters but something else caused by trobalt?
      Or maybe it makes them more noticeable?
       
    2. undecided
      Breezy

      undecided Member

      Location:
      Greece
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      Unknown.
      I think that there is a bottom line here...
      Trobalt can cause unexpected and undocumented side effects. It's a dice roll for every person.
      Maybe you'll get some relief - but you'll probably get some bothersome side effect as well.

      Starting Trobalt is a very personal decision. I'd say it's a Hail Mary, a last resort type of drug.
      If you'd ask me now, I'd stay the f*ck away from it. There is a reason it's being pulled off the market in many countries.
       
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    3. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

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      Just like there's all kinds of normal background noise in the auditory system, the visual stream is equally full of artifacts and distortions which usually get filtered out before you're consciously aware of them. I think this may be why visual snow and tinnitus are comorbid so often; it's a filtering problem at the brain level.

      It doesn't shock me that drugs which mess with one of these mechanisms will also impact the other.
      You've been through quite the gauntlet with psych drugs, right? If I were you, I'd try to stay off all that stuff for at least 4-5 years before assuming any of your various problems are "permanent". I've read so many stories of people who suffer for years after discontinuing benzos, and then end up feeling "basically healed" a few more years down the line... I get that waiting can be maddening, though, especially when you don't know what you're waiting for.

      I will say that my moods and overall experience of life was unbelievably toxic and up-and-down for about a year and a half after I finally tapered off benzos. The first 6-12 months especially were surreal.
       
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    4. Alue
      No Mood

      Alue Member Hall of Fame

      Tinnitus Since:
      01/2016
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      I agree that it's a last resort drug.
      Is it really being pulled off the market in some countries? What countries?
      You say that you would stay away, but now you are on a drug that is known to cause liver failure at therapeutic dosages?
       
    5. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

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      how do you feel about Tylenol
       
    6. Alue
      No Mood

      Alue Member Hall of Fame

      Tinnitus Since:
      01/2016
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      Acoustic Trauma
      I feel that it is put into way too many medications unnecessarily and is dangerous. If it were to go through FDA approval today it would likely not be approved for over the counter use.
      I also had a relative that died from liver failure caused by Tylenol, not acute overdose, but she had chronic back pain and took Percocets that contained 500mg APAP which slowly destroyed her liver.

      They started putting APAP into pain killers partly to prevent drug abuse. So to answer your question, I'm not a fan.
       
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    7. undecided
      Breezy

      undecided Member

      Location:
      Greece
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      Unknown.
      Germany and Greece to name a few (the link I have is in Greek so I won't bother posting it).
      I believe that there is an EU directive that the drug should be under strict control about the eye pigmentation and skin discoloration side effects.
      I believe it's now only available in Spain (under slight control), Italy (you can buy only the starter pack at some pharmacies without prescription) and the UK (need neuro prescription).
      Correct me if I'm wrong fellow Europeans.

      I'm pretty certain that a 10 day trial of Flupirtine will not cause any damage.
      I monitor my liver values regularly (I had to because of my rather lengthy RTG trial).
      I've tried a huge amount of drugs, probably everything except opioids. RTG is by far the nastiest dope out there.
       
    8. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

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      I friggin time traveled on this stuff , seriously , leave this poison alone.
       
    9. Kyxwz
      No Mood

      Kyxwz Member

      Tinnitus Since:
      x
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      It is the same thing I think.
      I had the floaters before Trobalt. Now I think they are always the same. But I do notice it also because evryone speak about this floaters! So I do not know. Anyway I'll stop in a few days. Feedback: partly positive.

      "Floaters are, in fact, visible only because they do not remain perfectly fixed within the eye. Although the blood vessels of the eye also obstruct light, they are invisible under normal circumstances because they are fixed in location relative to the retina, and the brain "tunes out"stabilized images due to neural adaptation. This stabilization is often interrupted by floaters, especially when they tend to remain visible.[2]"
       
    10. Leon909
      Ape-like

      Leon909 Member

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      09/2015
      apparently you can remove floaters with a relatively simple laser surgery.
       
    11. Kyxwz
      No Mood

      Kyxwz Member

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      ok people. I have got more floaters from trobalt. Stay away from this shit. This is another lesson of life that came to me.
       
    12. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

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      This is only the case for actual "floaters", debris floating on the surface of the eye.

      A lot of the discussion about "floaters" with regard to Trobalt appears to be discussing visual snow, which is a neurological problem that is not any more treatable than tinnitus.
       
    13. passerby
      Lurking

      passerby Member

      Tinnitus Since:
      God only knows...
      Floaters "float" inside the vitreous (the jelly-like substance of the eyeball), not on "the surface of the eye" - whatever it is you are referring to (the cornea, presumably).

      Laser surgery in relation to eye floaters has nothing to do with eyesight correction of the cornea (so-called LASIK procedure). Eye floater elimination is done with a YAG laser whereby the tiny particles inside the vitreous are destroyed. Dr. Gerbrandy is one of the few doctors worldwide who performs this type of laser surgery:

      www.floaterlaser.nl

      That might be your perception of the discussion. I think most people here refer to floaters as just that: floaters (and not visual snow).
       
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    14. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

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      right you are on the anatomy, and I said nothing about LASIK.

      We've had a number of people in this thread mention "visual snow" specifically; we've also had a number of references to "floaters" which then describe them as static/black dots/etc, and not as transparent tiny strands.

      If RTG can cause actual eye floaters, if anything that alarms me more because it implies some kind of physiological process. It shocks me not that RTG can cause visual snow, based on my own rather limited experiences with it (all sorts of sensory-filtering manifestations).
       
    15. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

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      04/2010
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      This is true, but noteworthy is that YAG doesn't work too well in all circumstances. (@Vaba tagging you here as you're interested in treating your floaters, too.)

      http://www.oneclearvision.org/treatment-for-eye-floaters/laser-vitreolysis-yag-laser/

      The success of laser treatment very much depends on the type of floaters and their position. Dr Scott Geller writes that some patients, predominantly those under the age of 35, cannot be treated (for floaters) as the floaters may be too close to the retina in an area referred to as the ‘pre-macula bursa’ (the consequence of which is that the floater is more dominant in the patients view, its size exaggerated as a result of the distance to the retina). To qualify this Dr Geller recommends ensuring that your ophthalmologist uses a Goldmann examination lens.
       
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    16. passerby
      Lurking

      passerby Member

      Tinnitus Since:
      God only knows...
      No, you didn't say anything about LASIK. I did. But, you stated that...
      ...and I am letting you know that there is no such thing as floaters on the surface of the eye (from the point of view of laser surgery). You clearly have no knowledge of the subject at hand, and so why not just stay out of the discussion (instead of guessing and adding to misinformation on a public forum)?
       
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    17. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

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      Your ability to nitpick and dig through posts reminds me a lot of ATEOS. In my opinion you're nitpicking about something that's not really relevant to what I said: laser treatment for floaters addresses actual physical debris in the eye.

      I stand by my previous observation that a good amount of the posts about visual artifacts from Trobalt appear to me to not be referring to a physical object in the eye.

      As you point out, this is a public forum, so I will continue to post as I please :) If you disagree with the content or subject of my posts, you're quite free to continue to banter with me, or simply ignore me. I'd also suggest that if you're deeply concerned about misinformation on the internet in general or on this forum specifically, there are probably many things that are much more egregious than someone stating that floaters are on the eye's surface rather than inside it... but, again, that's just my opinion.
       
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    18. Vaba
      Shitfaced

      Vaba Member

      Location:
      New New York
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      Unknown. Gradual, Progressive
      Thanks for the tag, @Markku. I will explain in greater detail why Dr. Scott Geller says not all floaters can be treated with a laser.

      I figured I'd butt in here because I've researched the development and treatment of eye floaters actively for several months (years?) now. If you care about this condition at all, then read on. There is a LOT of relevant information in here.

      @passerby is very much correct (if a tad rude) in his pointing out that floaters are not on the surface of the eye. The vitreous humor, the (almost always) clear jelly-like substance that fills something like 80% of the inside of the eyeball, is made up of mostly water, about 1-2% collagen strands, and assorted trace vitamins. What you are thinking of is a "pterygium," which is a bump of corneal tissue on the surface of the eye. These can be produced by damage, or just show up because. Incidences of pterygium are very easily scraped off the cornea with a scalpel by a trained opthalmologist.

      This is what a floater really is; As we age, this inert substance (the vitreous humor) that fills up your eyeball slowly loses cohesion as the collagen strands, which form an intricate support network for the vitreous humor, stretch, weaken, and snap. The loss of support causes pockets of vitreous to become more like a liquid than a jelly (remember, the vitreous is something like 90% water) and you can see the dangling, weakened collagen strands in these pockets as "floaters." This process can be accelerated by repeated serious head trauma (like in boxers) or by myopia (shortsightedness).

      The collagen strands that support the circular/ovular structure inside the eye "snap" out of their support structure and come loose, either as individual, clear strands or dots. Literally everybody has these, and if you look up at the sky, I'd be willing to bet you could spot at least one.

      The problem arises when you get unlucky, and these beasts really are just a matter of luck. Sometimes, the collagen strands coagulate, seemingly by pure chance, into hellish balls of opaque brown nightmare fuel with innumerable tentacles. It's like having a Lovecraftian beast inside your eye. The further back in the vitreous that this degeneration happens, the worse off you'll be. If even a little microscopic bit happens in the pre-macular bursa near the retina, you're basically screwed, as in my case.

      Here's a diagram of what I'm trying to explain. (Note that a vitreous does not have to be detached for floaters to occur. Vitreous detachment typically shows up in your 60s or 70s, and is the main cause of 90% of severe floater cases. Young people like Markku and I got them spontaneously and have to live with them for more than 50 more years...)

      eye-floaters-1.jpg

      The only floater I personally have any gripe with is a teeny tiny one in almost direct contact with my retina (in a zone of the vitreous called the pre-macular bursa) but, because of this proximity to the light-sensitive tissue, it is greatly magnified in size and casts a darker shadow. I have *many more* of the clear dots and strands in my right eye that I don't even give half a shit about, and don't notice unless I look for them. The left eye's floater has nearly killed me on the highway not once, but twice, as it completely obscures vehicles coming from the left, and it moves quickly as my eye moves.

      When it comes to lasers, a YAG (yttrium aluminum garnet) laser can, in the hands of the one or two trained professionals who wield them, eliminate floaters that are well-suspended in the eye, far away from the tissue-paper thin retina. This works because each laser has a focal distance, where multiple beams of light and heat meet. The laser is focused through a lens, converges its energy to a point, and then splits back up, dissipating its energy over more space as it continues on and "splits up." The doctor doesn't just shine a burning-hot, ultra-focused, laser-cannon beam STRAIGHT into your eye and onto your retina - the energy needed to burn collagen away is quite high. Were the laser to make full contact with the delicate retina, it would burn it, producing blind spots. A surgeon having a poor focal distance setting has caused this to happen many times, so you can't even tout it as a safe treatment.

      (For an example of the disastrous consequences a laser can have, read this http://floatertalk.yuku.com/topic/6...tVitreolysisgtStem-cellsg?page=1#.V2MAE7srKUk)

      This is (very simple) example of what I mean by focal distance. It's simple optic science and shouldn't be hard to understand - the same mechanic is used in common eyeglasses to correct near- or far-sightedness.

      2.gif

      And here is a diagram explaining how the laser converges, zaps a floater, and diverges.

      3.jpg

      The same focal-distance mechanic is what makes the YAG laser ineffective for floaters such as mine. My floater is SO CLOSE to the retina that the laser, were it to be aimed at the floater at the back of my eye, the beam would hit and melt the floater, but then immediately hit my retina, almost FULL FORCE, because it didn't have the time or space to dissipate its energy in my eye. It would give me blind spot where the floater was (like in the thread I linked to).

      As a side note, Trobalt causes visual snow, not eye floaters. People, for some reason, can't tell the difference sometimes. Visual snow is a type of neurological sensory interference, where the optic nerve (maybe? no one knows) transmits garbage information to the brain that is interpreted as static, much like tinnitus is garbage information from the ears, interpreted by the brain as ringing, sizzling, screaming, Beethoven's bloody fifth symphony, or whatever.

      Floaters, however, are not neurological. They are very real, very physical, very medically unappreciated, and very rarely, very disabling. If you have any other questions or if I didn't explain something clearly, feel free to ask me.
       
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    19. NGC891
      Wishful

      NGC891 Member

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    20. papu
      Chatty

      papu Member Benefactor

      Tinnitus Since:
      03/2015
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      No visual snow, nor visual interference. I had plain all floaters after goiong upwards of 800 mg per day (divided in three dosages of course). They are basically 90% gone since reducing my intake of trobalt just to temporary use of 200 mg of trobalt. Once a day when only it goes up and gets a little bit out of control.
       
    21. Beste
      Disappointed

      Beste Member

      Tinnitus Since:
      02/16/2016
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      Benzo/Clonazepam, Stress
      Sorry to hear that. But did you have any reducing in your T?
       
    22. Kyxwz
      No Mood

      Kyxwz Member

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      A little bit but not ever. So it was an useless tentative. But now i have some central floaters. Very good.
       
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    23. Kyxwz
      No Mood

      Kyxwz Member

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      Your floaters are gone after a dose reduction? After how many day?
       
    24. papu
      Chatty

      papu Member Benefactor

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    25. Adriano_ Moreno

      Adriano_ Moreno Member

      Tinnitus Since:
      2014
      How long must I take this drug 3x 300, three months or longer? I have all day sad... It is horrible... At night I drink alcohol, I want to forget about this...:cry:
       
    26. Goldilocks
      Lonely

      Goldilocks Member

      Location:
      Sydney Australia
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      08/1995
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      Original T 1995, aggravated T 2014, increase 2016
      Unfortunately retigabine is not yet available in Australia at all. I just called GSK and it's been approved by TGA but no launch plans are even listed yet so likely not until at least 2017 or later. Just FYI for those of us in Australia.
       
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    27. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      Thanks for looking into that. If anybody of course knows a way to source this for fellow Australians, I'd be all ears
       
    28. Karl28
      No Mood

      Karl28 Member

      Location:
      Melbourne
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      2001 bad since 2015
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      Loud music via headphones
      I live in Australia and have a box of retigabine. Got it sent from overseas.

      Never ended up taking it though.

      Anyone want it?
       
    29. squeek

      squeek Member

      Location:
      Australia
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Noise impact/maybe seaborn
      I'm in Sydney. What's the process to obtain retigabine in Australia?
       
    30. zoid
      Curious

      zoid Member

      Location:
      Netherlands
      Tinnitus Since:
      01/2015
      Cause of Tinnitus:
      Acoustic trauma
      I have taken trobalt seven months ago for a two month period and stopped because of the side effects. The last two weeks I have strange eye problems. They're hard to describe but I experience some visual snow, find it hard to focus and see spots and flashes. The doctor has done a quick eye exam and my vision is sharp and normal so I need to see a specialist.
      I don't know if it has something to do with my Trobalt use or it is something else but I'm really scared.
      I have an appointment scheduled for an eye exam by a specialist in two weeks.
      At this moment I wish I never had taken Trobalt. I'm really paranoid that I've also damaged my vision.

      If there's any news iI'll post an update.
       
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