Retigabine (Trobalt, Potiga) — User Experiences

Discussion in 'Treatments' started by Tinnitus Talk, Sep 1, 2014.

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    1. locoyeti
      Sunshine

      locoyeti Member Benefactor

      Tinnitus Since:
      2/2014
      Progress Report

      Progress Report Date:
      Feb 2, 2015

      Current Retigabine Dosage:
      none

      Current Side Effects:
      none

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      it's been two weeks since my last update. at that time i had mentioned that a few days prior to that i had a bad day and a half of high pitched t. that was the last bad day i had, since then it has been over 2 weeks of very low t, which is unprecedented. no spikes since then. the rhythmic somatic t is pretty much gone, it sometimes appears in lockstep when i walk, which used to happen all the time, now it very seldom happens and usually goes away quickly. the high pitched t is basically gone. what remains is a slight hissing which is very ignorable. h is still gone.

      i feel as if i have turned a corner, my t really does not bother me much anymore, and is much easier to ignore. i feel well on the way towards habituation, and in a few weeks i am coming up on my one year anniversary. i am quite sure the drug had lots to do with my current levels of t. it took away the h (HUGE). in terms of lowering the t volume, i have not felt a reversion to pre-retigabine volume levels since i stopped almost 3 weeks ago. the high pitch tone is pretty much gone. i still hear my t, and i am still masking, but i no longer have the existential dread of this ailment. if i had to do it all over again i would have taken RTG very soon after getting tinnitus, and in fact am going to suggest to my ENT doc, where he to start a trial for this, to emphasize giving this drug at the acute stage.

      the question of why there seems to be such a wide range of effects/efficacy of this drug on the different trialees is something i have thought of. for sure the obvious culprit, discussed by many others, is that every brain is different, and perhaps every T is different and will respond differently. there is also the issue of confounds- there seem to be a few people taking other medications with this, which i would advise against if you were to take this. mostly though i think it is important to put ones brain (and by extension, one's T) through the experience of a 400mg tablet. not many have done that yet, and as i have written about before, i really feel that dosage matters. those that have (rtwombly, juan carlos, danny boy) taken the high doses seem to have had the best results.

      Other Medications/Supplements:
      none
       
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    2. Albertus
      Killer

      Albertus Member

      Progress Report

      Progress Report Date:
      Feb 3, 2015

      Current Retigabine Dosage:
      300 TID

      Current Side Effects:
      None.
      Analytical control urine every 20 days.

      Current Tinnitus Severity:
      1 out of 10

      Changes in Tinnitus:
      Hey guys, I bring good news. This last week I've improved a lot, All my T have dramatically fallen to almost be imperceptible in my last update and I noticed that after waking enjoyed quite next to total silence time, could be most of the morning if you notice my T and was what throughout the afternoon when it was returning to its average level. As the silence has lasted all day and night. Right now I'm taking 300mgTID and my T is almost imperceptible in a quiet room to hear I have to place my fingers tightly covering my ears and yet I hear far. this feeling lasts me for 24 hours and that several days have not had my morning dose, so I left it at 300x2. I have thought about taking 300TID continue until the end of the month and begin phasing in March. to be completely out of RTG in late March. I am very very happy with the results obtained with the low dose that I am taking. I will continue informing you of my good condition. A greeting !!

      Other Medications/Supplements:
      Omega 3 700mgx2/day, Magnesium 200mg, Lutein + zeaxanthin 30mg, Coline & Inositol 200mg, Melatonine 4mg for sleep.
       
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    3. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      Progress Report

      Progress Report Date:
      Feb 7, 2015

      Current Retigabine Dosage:
      100 mg occasionally.

      Current Side Effects:
      Get slightly doped up. Writing is tough.

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      Again , I am writing this after taking one 100mg , therefore i am at a 2.
      I have only ever taken 1x100 mg at a time , two of those during the day at the most (only take two a few times) It still seems to kick my T way back !? Maybe a coincidence , I say that as I seem to be the only one with such efficiancy from one 100mg.

      Overall my T is super aggressive these days , last week I got 4-5 awesome days and like always I started to imagine I was getting better but of course this bastard kicked back in full force.
      Last few days have been super hard , today I gave in and took one pill
      Hate pills ,always hated pills ...I have once in my life taken pills as a last resort to an wrongly diagnozed illness,that is what got me here...pills. . so .

      It is so tempting to go full in on this but I think I will not do that , seems pointless if its not lasting.

      Other Medications/Supplements:
      Coffee.
       
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    4. Rog

      Rog Member

      Location:
      NY and Brazil
      Tinnitus Since:
      02/2014
      New User Information

      Gender:
      Male

      Age:
      36

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Feb 3, 2014

      How Did You Get Tinnitus?:
      Other (define below)

      Explain How You Got Tinnitus:
      ear infection plus a cold one month later

      Is Your Tinnitus in Which of the Following?:
      Both Ears

      What Kind of Tinnitus Do You Experience?:
      Ringing, Hissing, Pulsing

      Describe Your Tinnitus:
      First 5 months on set it was 10/10. After that my brain started to get used to it i guess.It bothers me mostly mornings and nights when im in quiet places, when im stressed and right after working out.Easy to mask during the day.

      The Severity of Your Tinnitus Before Starting Retigabine?:
      5 out of 10
       
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    5. Philemon

      Philemon Member Benefactor

      Location:
      France/Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Mild NIHL
      Progress Report

      Progress Report Date:
      Feb 10, 2015

      Current Retigabine Dosage:
      600 mg/day (i have been on 900-1200mg/day for some weeks, i'm now tapering down)

      Current Side Effects:
      none at 600/day.even at the end of 1200 mg a day just a bit of highness or mood enhancement, but very very slight and no big deal, no cognitive impairment, no concentration problems (concentration at work is very easier than with my bad T before trobalt), even at work it was ok and my colleagues didn't notice. weirdly enough, i oftenly felt more highness with 200 or 300 during afternoon on a full empty stomach than with 400 in the morning with an empty stomach. no problem at all to pee, and Trobalt sometimes makes me feel the need to go to the toilets but ... not to pee if you see what i mean ;-) (sorry for that, but i mean it's a side effect after all, no ?)

      Current Tinnitus Severity:
      1 out of 10

      Changes in Tinnitus:
      almost the same as in my last progress form : still very quiet, am having mostly good days, and from time to time what i call a bad day or two (tinnitus not so loud, it's never so loud now anyway, but with a more bothersome sound), generally one or two bad days per week but never more. But there was still some 'qualitative changes' happening those last weeks, i mean residual inhibition (from the sound of a shower for example) is definitely accentuated ... I always had residual inhibition but even in my first good weeks with Trobalt, residual inhibition lasted for 30seconds/1 minutes, now i more and more experience residual inhibition (80% reduction of the louness for example) that last for some hours, if not the whole day ... this 'qualitative changes' is just one more thing that convinces me that i'm not experiencing a placebo thing (and anyway, i don't think i'm the placebo kind of guy). ok, i keep fingers crossed that it will stay like this even when i'll be off the drug. Anyway, i think i'll maybe try soon another round on trobalt, maybe on an extended period of time (more than 2 months at high dosage) to see if i could get further benefits of this drug

      Other Medications/Supplements:
      none
       
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    6. rtwombly
      Bookworm

      rtwombly Member

      Location:
      Southeast USA
      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Unknown
      Progress Report

      Progress Report Date:
      Feb 10, 2015

      Current Retigabine Dosage:
      150mg every 6 hours

      Current Side Effects:
      None

      Current Tinnitus Severity:
      3 out of 10

      Changes in Tinnitus:
      Today particularly I've noticed a slight increase in loudness, but it is not dramatic. The high-pitched whining seems to have stayed away, it's just the low-frequency humming that is a bit louder today. Maybe this is just today, dunno. I do feel like the medicine is getting out of my system, so this is when I'll see how much of the effect was permanent and where I am at present.

      I'd love to be completely cured, but I realize it may take more than a month on the sorta-kinda right medicine. I'll keep an eye on the AUT00063 results and consider what to do next. As things stand right now, I'm much, much better than I was six months ago.

      Other Medications/Supplements:
      Lentra, Prolent, Procite-D
       
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    7. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      New User Information

      Gender:
      Male

      Age:
      3-

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Jul 3, 2011

      How Did You Get Tinnitus?:
      Acoustic Trauma

      Explain How You Got Tinnitus:


      Is Your Tinnitus in Which of the Following?:
      Both Ears

      What Kind of Tinnitus Do You Experience?:
      Ringing, Screeching, Dial Tones

      Describe Your Tinnitus:


      The Severity of Your Tinnitus Before Starting Retigabine?:
      10 out of 10
       
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    8. rtwombly
      Bookworm

      rtwombly Member

      Location:
      Southeast USA
      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Unknown
      Progress Report

      Progress Report Date:
      Feb 12, 2015

      Current Retigabine Dosage:
      150mg every 6 hours

      Current Side Effects:
      Brief manic episodes, eye floaters

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      Interestingly, after my oh-no-it's-creeping-up-again Tuesday, I've had two days in a row of low volume and annoyance, roughly equivalent to when I was on my 300mg TID dosage. This morning I had a manic episode, which was my most noticeable side effect. I think I really could have responded to a lower dose all along, and just didn't give it long enough, so take that as a lesson for other users.

      On the other, I've been seeing more eye floaters while in my manic state and a little bit after. I've had them in the past and my brain has edited them away. I think what is happening now is that the part of my brain responsible for that editing is being inhibited. That's what it's been like, if I haven't explained thoroughly enough - windows in my brain shut for awhile, so all of a sudden I can't pick the right words, or remember what I came in the room to do, etc. At its worst I've forgotten how to speak, in one of my two languages, different ones at different times. Anyway, I think the eye floaters are the same thing, because I see several at once, then after the manic phase they go away.

      BUT, I'm not 100%, so I'm not pushing to slow down the dosage reduction. This Sunday I'll go down to 150mg every 8 hours, then 10 hours, then 12.

      Still happy I did this experiment and still encourage others to try. I hope we get news soon of success with AUT00063 and progress on the improved Retigabine.

      The future is bright and melodius!

      Other Medications/Supplements:
      Lentra, Procite-D, Prolent
       
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    9. Juan Carlos
      Whistles

      Juan Carlos Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      02/2014
      Progress Report

      Progress Report Date:
      Feb 13, 2015

      Current Retigabine Dosage:
      100+100+300 tapering down from 900mg

      Current Side Effects:
      All the described above. And posibly next one
      Yesterday I got new side effect, not still 100% sure if is attached to RTG, but my right foot goes to "sleep" more often, like for example u are sitting in a wrong position or u are in a cold place, i think its also called numbness. It used to happen me on very cold places but now also when on RTG 300mg

      I have to say that, well is truth RTG helped my tinnitus, but also, maybe bigger help I got from RTG was the mood enhancer. The feelings I got with this drug is some of the best feelings I ever had in the last years.

      It takes to light my creative side, it removes any prejudice on me, it make me be totally frank with everybody, it makes me be nice with everybody, it doesnt make me feel emotional dependant with anybody, im happy with myself at the moment and i enjoy anything im donig at the moment, even if its wash the dishes or cook. I have cool ideas wich normally i dont have.
      I go deeper in my thinkings, althought totally destroys the short-term memory but anhances long term memory.

      Typical situation, i wake up from dinner table to grab something from the kitchen, and 5 seconds later i forgot why i woke up, or take phone to see weather and ending up seeing facebook...
      RTG shut down any "automated" learning, aka type, hand-writing, play guitar, skate, dress up fast etc etc Another way to explain, Just try to see the difference between the first day you were driving your car, and now you driving the same car 10 years later. First day you felt everything happening on it, all was new and you were paying attention to every feeling while driving, you enjoyed like a child with new toy. Now you drive almost automatically, you dont enjoy the drive at all and you think in any random thing except that you are driving a cool car


      Well, now tapering off im becoming more like than before, thast fast, productive and not thinking so deep on things as when high, but i really want to keep some part of "me in high" and keep on think deeply and remove some prejudices, i think i can be much happier person, and also this helps to forget about T.

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      not much more to say. It has not improved on last weeks, but also it has not worsened, so i guess its good because of keeping lasting improvements.

      I feel H came back a little. If when im totally off, H is like on baseline, i maybe try Keppra to see if it removes H as did with @@Viking

      I am tapering off because Im following the initial plan of stay maximum 3 months on max dose, just because of bad long term side effects and also because I dont want to create tolerance to RTG, in future i will use as an Aspirin in case get some spike or i just want to take it, will also help a stress-spike wich is bad for T.

      If RTG was safe to take at long term, i would totally continue treatment for more time, maybe in one year i will be totally cured. Unluckily this is not the case, and now the best idea is to wait for AUT results

      Other Medications/Supplements:
      Multivitamin, Siddhi Bimala, Siddhi Agar, Glutamine
       
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    10. 65vwbus
      Dreaming

      65vwbus Member

      Location:
      UK
      Tinnitus Since:
      11/2013
      Progress Report

      Progress Report Date:
      Feb 16, 2015

      Current Retigabine Dosage:
      150mg x 3

      Current Side Effects:
      I feel a bit sleepy/drunk for a while about an hour after taking the pills. I also feel happier, but i'm not sure if thats a direct or indirect side effect, because its also having a major effect on the level of neuropathic head and face pain i've suffered from for the last 18 months. I LOVE this drug! I can feel my life slowly creeping back. NO other epilepsy drug/painkiller/herbal remedy/acupuncture/shamanic healing/osteopathy/crystal healing/reiki worked. I tried a lot. :)

      Current Tinnitus Severity:
      8 out of 10

      Changes in Tinnitus:
      One tone out of the three has been skipping over to my left ear at times. Sometimes it turns to morse code, like its fighting with the drug. However at times it has seemed louder, but then it drops down again. The tones seem to be clearer.
      Generally I notice it less before, it takes less to mask it now.

      Other Medications/Supplements:
      Dosulepin and Primidone (for tremor)
       
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    11. Albertus
      Killer

      Albertus Member

      Progress Report

      Progress Report Date:
      Feb 24, 2015

      Current Retigabine Dosage:
      3x300mg TID

      Current Side Effects:
      15 min. slight hand tremor, maybe it's time letting go.

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      Hello again, this time the news is not so good. In my last post infomaba a very good improvement but only took me 5 days, took more than a week back to the previous level, where my T is quite manageable and allows me to sleep without masking, in a silent room is perfectly audible. .. I feel like I've stepped back a couple of steps but hoping to re-take forward. A greeting !!
      Also wanted to note that I have gone cold during these days and has undoubtedly contributed to worsening my T.

      Other Medications/Supplements:
      Omega 3 700mgx2/day, Magnesium 200mg, Lutein + zeaxanthin 30mg, Coline & Inositol 200mg, Melatonine 4mg for sleep.
       
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    12. jellyrajah

      jellyrajah Member

      Tinnitus Since:
      09/2014
      New User Information

      Gender:
      Male

      Age:
      21

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Sep 27, 2014

      How Did You Get Tinnitus?:
      Acoustic Trauma

      Explain How You Got Tinnitus:


      Is Your Tinnitus in Which of the Following?:
      Both Ears

      What Kind of Tinnitus Do You Experience?:
      Hissing, Static, Buzzing

      Describe Your Tinnitus:


      The Severity of Your Tinnitus Before Starting Retigabine?:
      2 out of 10
       
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    13. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      New User Information

      Gender:
      Male

      Age:
      33

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Nov 19, 2009

      How Did You Get Tinnitus?:
      Acoustic Trauma

      Explain How You Got Tinnitus:
      Suffered sever acoustic trauma. Had T for few days than went away. than after a few weeks T started in the middle of the night. Still not sure what triggered it or if it even was from the trauma or some aspirin taken around that time as well.

      Is Your Tinnitus in Which of the Following?:
      Both Ears, Right Ear, Head

      What Kind of Tinnitus Do You Experience?:
      Ringing, Hissing, Static, Crickets

      Describe Your Tinnitus:
      static with high pure tone in 6000-8000 range with cricket like modulating frequencies when consciously zoomed into.

      The Severity of Your Tinnitus Before Starting Retigabine?:
      7 out of 10
       
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    14. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      Progress Report

      Progress Report Date:
      Mar 5, 2015

      Current Retigabine Dosage:
      100 mg occasionally.

      Current Side Effects:
      None..

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      Ok, what seems to have changed for me is that I now know what spikes are , I get a few awesome days , and then a couple of bad ones. Used to have constant bad ones pretty much . I guess my T never let up during almost ..I guess 3 years ? Never really understood it when people talked about spikes.
      The other day I felt pretty much cured for a few days , I have now come to realize that a few good days and some bad ones in between is normal T for a lot of people but for me it has changed everything.
      I fully expect to be hit hard with T again but today was a good day and for that I am thankful.

      Dont get me wrong , I still have pretty bad T , last week ...man , thought I would not get through it .
      Overall though I have made tremendous progress.

      I have started making music again and took the big step of setting up a new studio .
      That is HUGE for me.

      How big of a part has Retagabine played in all of this ? .
      Knowing that I can get relief is very important , just makes the whole thing more bearable.
      I can at least decide not to take a pill.

      Also , I feel I started getting better after I started this trial ..why exactly i am not sure.

      Other Medications/Supplements:
      none
       
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    15. Juan Carlos
      Whistles

      Juan Carlos Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      02/2014
      Progress Report

      Progress Report Date:
      Mar 5, 2015

      Current Retigabine Dosage:
      200 per Day

      Current Side Effects:
      very slight Highness 40min after pill

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      Im on very low dose, it barely affects my T but i wanted to do a very slow taper off because i think its very important, much more than taper on .

      trying to draw some conclusions:
      1) About the effective volume of my T: Surely is not higher. I think is a bit lower, specially in some situations. I remember before it was quite high after shower or after sport, and now is not, that must be something related to blood pressure or something, no idea. Rate on silence is very dificult, but yeah im pretty sure the permanently got a slight better, definetly is not cured
      Now 100 or 200mg dose affects my T, that didn't happen when started treatment

      2) About total annoyance: I can say surely now is much better, why? not sure if T is really lower or i got habituated because of trobalt, probably because of both causes

      Will i take more Trobalt after taper off? probably yes, why?
      -In case i have some spike, wich normally dont happen in my case
      -In case I accidentaly im involved in a noise exposure or after noise exposure
      -In case i have some stress-spike, for my own joy and to help my T as its very stress-connected
      -In case i just wanna enjoy its highness effect: this may sound weird but i love it

      i think take around 200 or 300mg per week can't be dangerous, anyways i wont do it without a reason

      Will see how thing will go and its posible that next year by same period (starting in november) i can do another 3 month round trip, i thinks its a good time frame to have some positive effect and avoid tolerance to it

      Other Medications/Supplements:
      multivitamin/minerals, glutamine, Bimala, Agar
       
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    16. thesaint
      Confused

      thesaint Member Benefactor

      Location:
      Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      high pitched fans
      New User Information

      Gender:
      Male

      Age:
      66

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Jun 15, 2011

      How Did You Get Tinnitus?:
      Acoustic Trauma

      Explain How You Got Tinnitus:
      exposed to high pitched whining fans used to dry drywall plaster on a job site

      Is Your Tinnitus in Which of the Following?:
      Both Ears, Head

      What Kind of Tinnitus Do You Experience?:
      Ringing, Hissing, Whooshing

      Describe Your Tinnitus:


      The Severity of Your Tinnitus Before Starting Retigabine?:
      5 out of 10
       
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    17. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Progress Report

      Progress Report Date:
      Mar 23, 2015

      Current Retigabine Dosage:
      400mg once a day, single dose.

      Current Side Effects:
      Slight drunkenness

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      Tinnitus level same as stronger dose of 1200mg.

      Other Medications/Supplements:
      Cats claw.
       
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    18. 65vwbus
      Dreaming

      65vwbus Member

      Location:
      UK
      Tinnitus Since:
      11/2013
      Progress Report

      Progress Report Date:
      Mar 26, 2015

      Current Retigabine Dosage:
      200mg x 3

      Current Side Effects:
      Around 20 minutes after taking it, I feel quite drunk. This lasts for an hour.
      The best side effect is that the levels of my previously untreatable neuropathic head and face pain have gone down.
      I have also noticed that i'm getting a lot of very old memories (30 years ago) come back to me, in extreme detail.
      Colours become brighter and I can see in more detail after taking it.

      Current Tinnitus Severity:
      8 out of 10

      Changes in Tinnitus:
      Tinnitus is slightly better than before, I don't hear it over absolutely everything anymore.
      It also sometimes switches to the other ear, and sometimes one of the tones turns to morse code.

      Other Medications/Supplements:
      Dosulepin, Primidone (for tremor)
       
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    19. Albertus
      Killer

      Albertus Member

      Progress Report

      Progress Report Date:
      Mar 27, 2015

      Current Retigabine Dosage:
      Cero.

      Current Side Effects:
      Hand Tremor.

      Current Tinnitus Severity:
      7 out of 10

      Changes in Tinnitus:
      Hello again, these last news I bring is nothing good. Now I'm completely out of Trobalt, my tinnitus has returned to its original state, if it is true that RTG has helped me cope during this time and that has helped me a bit better get used to it. H has not returned and if so is mild and early hours of the morning. I've been four months in total and I had to leave because I was generating tolerance and side effects were becoming more noticeable, especially hand-shake. My expectation is now in AU063. Good luck to those who are trying Trobalt right now. A greeting!

      Other Medications/Supplements:
      Omega 3 700mgx2/day, Magnesium 200mg, Lutein + zeaxanthin 30mg, Coline & Inositol 200mg, Melatonine 4mg for sleep.
       
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    20. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      Progress Report

      Progress Report Date:
      Apr 3, 2015

      Current Retigabine Dosage:
      100 mg occasionally.

      Current Side Effects:
      None

      Current Tinnitus Severity:
      4 out of 10

      Changes in Tinnitus:
      Hard to tell , I feel that the volume has gone down but annoyance level has gone up !?
      Not sure if that makes any sense. Feels like buzzing in my brain , which I hate , my good days are just a regular eeeeee sound and that does not bother me one bit.
      I am now running out , I think I am going to get another box , maybe I will start taking Retagabine every day and see what happens.

      Other Medications/Supplements:
      None.
       
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    21. Tutuff

      Tutuff Member

      Tinnitus Since:
      12-29-13
      New User Information

      Gender:
      Male

      Age:
      51

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Dec 29, 2013

      How Did You Get Tinnitus?:
      Unknown

      Explain How You Got Tinnitus:


      Is Your Tinnitus in Which of the Following?:
      Both Ears

      What Kind of Tinnitus Do You Experience?:
      Hissing, Static, Buzzing

      Describe Your Tinnitus:
      one day it may be nearly impossible to hear...but the next day i will wake up with a static buzz in the back of my head....once im up and moving it increases in volume and pitch....some days its like a tea kettle before it hits the high pitch whistle.....some days it reminds me of a dentist drill.....the weird part is that it will not stop until i have a good nights sleep....if it starts up late in the day it wont stop until the next nights sleep....its been on this cycle since the middle of Feb. 2014....its insane how loud and high pitched it is some days

      The Severity of Your Tinnitus Before Starting Retigabine?:
      10 out of 10
       
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    22. Tutuff

      Tutuff Member

      Tinnitus Since:
      12-29-13
      Progress Report

      Progress Report Date:
      Apr 12, 2015

      Current Retigabine Dosage:
      150 mg X 3 daily

      Current Side Effects:
      none

      Current Tinnitus Severity:
      10 out of 10

      Changes in Tinnitus:
      Nothing for sure. I've been taking 100 mg. X 3 daily for 1 week. It's been a pretty good week. I can't say for sure that there is improvement, or that it has just been a good week. I have increased my dosage to 150 mg. X 3 daily and I will report back in 1 week. I still have my fingers crossed.

      Other Medications/Supplements:
      The only other drugs I take are for sleep. Some nights it takes a lot to get over the dentist drill running in my head. I have Flexeril muscle relaxers, Temazepam in 15 and 30 mg., Trazadone, Benedryl , Melatonin. I take different combonations and dosages depending on how loud and high pitched my T is.
       
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    23. Tutuff

      Tutuff Member

      Tinnitus Since:
      12-29-13
      Progress Report

      Progress Report Date:
      Apr 19, 2015

      Current Retigabine Dosage:
      200 mg. X 3 Daily

      Current Side Effects:
      none

      Current Tinnitus Severity:
      10 out of 10

      Changes in Tinnitus:
      none

      Other Medications/Supplements:
       
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    24. David King
      Balanced

      David King Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      Dec 2011
      New User Information

      Gender:
      Male

      Age:
      30

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Dec 24, 2011

      How Did You Get Tinnitus?:
      Acoustic Trauma

      Explain How You Got Tinnitus:


      Is Your Tinnitus in Which of the Following?:
      Both Ears, Head

      What Kind of Tinnitus Do You Experience?:
      Ringing, Static

      Describe Your Tinnitus:
      Very high frequency. A few different tones at 14-16 khz along with static.

      The Severity of Your Tinnitus Before Starting Retigabine?:
      3 out of 10
       
      • Informative Informative x 2
    25. David King
      Balanced

      David King Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      Dec 2011
      Progress Report

      Progress Report Date:
      Apr 21, 2015

      Current Retigabine Dosage:
      1x100mg

      Current Side Effects:
      I took my first dose today. No side effects at all.

      Current Tinnitus Severity:
      3 out of 10

      Changes in Tinnitus:
      No changes.

      Other Medications/Supplements:
      None
       
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    26. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      Progress Report

      Progress Report Date:
      Apr 23, 2015

      Current Retigabine Dosage:
      3 x 100mg

      Current Side Effects:
      Drunkenness, agitation, scrambled thought processes, hard to find words and explain myself

      Current Tinnitus Severity:
      7 out of 10

      Changes in Tinnitus:
      - 20 min after intake of 100mg at 8.30 morning on empty stomach slightly drunkenness, happy feeling, soft attitude. Looking around the room and things move a bit slower. Very slightly influence on T – take edge of the high tone. Physically feel something in the front part of the brain.

      - 25 min drunkenness increased with slight wobble and goofiness but all very enjoyable.

      - 1hr drunkenness has gone (unfortunately ☺ ) I would not yet say T is lower in general but it definitely has some kind of influence. Seems my high tone is less invasive. Gone from static noise with screech to a static noise with some.

      took 3 x 100mg today and now 3 hours after last intake I have a low hum, noise and a very annoying high tone which is making me very tired all day long. Had do go about and do a lot of stuff and use my brain and think about problems and that stuff is so tiring with tinnitus ... i`m really exhausted now ... mentally exhausted ... that is what this bloody thing does, it exhausts you mentally ... so Trobalt hasn`t helped me in that way ... yet.

      Other Medications/Supplements:
      Iron, Magnesium
       
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    27. Tutuff

      Tutuff Member

      Tinnitus Since:
      12-29-13
      Progress Report

      Progress Report Date:
      Apr 28, 2015

      Current Retigabine Dosage:
      none

      Current Side Effects:
      I began feeling really not good last Wed. I was tired and run down. I thought I might be coming down with something. While at a clinic I ended up passing out. They ran an EKG and I had an irregular heart beat. I stopped taking Potiga and everything is back to normal.

      Current Tinnitus Severity:
      10 out of 10

      Changes in Tinnitus:
      none

      Other Medications/Supplements:
       
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    28. David King
      Balanced

      David King Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      Dec 2011
      Progress Report

      Progress Report Date:
      Apr 30, 2015

      Current Retigabine Dosage:
      I've done 6 days of 3x100mg and this is my first day of 2-1-2 (x100 mg)

      Current Side Effects:
      None. I read that you can get blurred vision from ingesting alcohol while on Trobalt, but that has not been the case for me.

      Current Tinnitus Severity:
      3 out of 10

      Changes in Tinnitus:
      None. Usual fluctuations.

      Other Medications/Supplements:
      Occasional sleeping pill (Zolpidem ratiopharm).
       
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    29. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      Progress Report

      Progress Report Date:
      Apr 30, 2015

      Current Retigabine Dosage:
      atm 3x100mg

      Current Side Effects:
      happy, energised

      Current Tinnitus Severity:
      6 out of 10

      Changes in Tinnitus:
      Day 2

      3x100 mg

      1. First dose 9hr, not drunk but seemed to have an effect lowering volume. Walking around house not noticing T. happy, smiling. Feeling relieved. T is still there in high tone when blocking ears
      2. second dose 15hr being bit energized, talkative. T is there but background (noisy environment – kitchen of restaurant)
      3. 21hr energized, coming home at 24 hr high tone is more silent but low hum very noticeable in quit room. (was in noisy environment for the whole day working, Feeling tired from work)

      Day 3

      2x 100mg + 150mg

      1. ever so slightest change in perception that lasted only 10 minutes. Slightest uplift of emotions. No real change in experience of T

      2. not really noticed any effect

      3. upped dose to 150, 30 minutes later starts the drunken part, expect it to last 20 minutes but after 20 minutes it suddenly goes higher. I`m at work washing dishes. Bit wobbly on my feet, whistling, smiling, singing songs, slow reaction time, emotional empathic, out of the T bubble … having fun.. T seems pretty low but is noisy place … came home from noisy environment to a semi quiet place (raindrops falling) no T … but 3 hours after intake T slowly returning as I write this. T is there but in the background. Low hum and high tone bit very quit in a near noiseless room. Volume seems to go up and down, 30 min ago seemed as usual now really notice difference and is very silent.

      Day 4

      1x150mg + 2x 100mg

      1. started with 150mg. Not the desired effect. Little drunken again which lifts the mood though.
      2. No real effect noticeable – No reduction in T
      3. No real difference

      Day5

      1x150mg 1x100mg 1x150mg

      No real side effects noticed. Just i`m a bit uplifted and seems I don`t worry as much today about a few issues in my life. Also working outside don`t seem to notice my T as I usually do 90 percent of the time. Feels like Just working and not caring too much. Coming home to pure silence high tone and hum are there, bit of a beating to the moral and experience of life. Take last dose and feel but side effect coming, tired and lightheaded … time to enjoy ☺

      Day 6

      100mg in the morning all good, working outside no nothing to report. 150mg arvo, uplifted happy, dancing at home enjoying the experience, bit wobbly on the legs. T seems same or maybe slight difference. Evening time 200 but don`t notice any real diffrence

      Day 7

      100 x3
      Keeping the dose low because running out of pills need to get more. T morning is high. Have n`t had any side effects. Now late at night T is very bearable.

      Other Medications/Supplements:
      Iron, Magnesium
       
      • Informative Informative x 3
    30. Juan Carlos
      Whistles

      Juan Carlos Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      02/2014
      Progress Report

      Progress Report Date:
      May 4, 2015

      Current Retigabine Dosage:
      0

      Current Side Effects:
      0

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      as you know, im off for 2 months or so...

      Well this weekend I spend in another village on the east of mallorca with a group of friends. On friday night we were in a terrace and all decided to go to a pub, in that pub there started a jazz concert, was small place but loud music so i plugged my earplugs, music ones, flat frequencies ~25db, for 30min, then stopped concert for a while, later started again so i plugged them again, but 10 min later started to hear hear the fuckin T even inside the pub (having plugs help to hear it) so i went to street and it was quite loud, let say 4.5 level , something wich never in my live i had before, I was in the street and still hearing it, so i went to the apartment we rented, yeah T affecting people lifes, didn't even say goodbye to my friends.
      Even im totally Off trobalt i always take with me if i travel. I wanted to take 300 or 400 RTG but i had a beer so that was risky for the heart issues so i took only 100mg, didnt seem to affect too much. Next day was still quite high, surely higher than previous days. At night i had special dinner with wine and slept in a friends house so didnt take rtg at all. Sunday still was higher than usual, let say level 3.5. Well finally on Sunday arranged to get home early for dinner. Before dinner i took 300mg, i can say absolutely that level went down to a 1.5 or so and became totally careless of it (side effect). I know that sleep good helps my T (last 2 nights didn't sleep good because i wasn't at home), so slept 9h in a row, before going to sleep i took additional 100mg and 600mg magnessium citrate, that makes a total of 400mg rtg.
      I wake up this morning with nearly zero T, let say 0.5 and no trobalt side effects. I wish that friday didn't take any beer so i could take 400mg after concert and saved 2 days of loud T. I remember when i was on taking trobalt every day it wasn't so effective, maybe i was creating tolerance.

      Note also that on sunday morning i took 500mg Keppra, so maybe still at night was something in my blood and caused this potentiation effect that some people is experiencing as 1MW and Dannyboy

      I will keep trobalt with me all my life, it can save my life, you never know when you can find yourself in a loud place
      All the progress i made by relaxing on the last 2 months, fucked up by a 30 min concert. Will see how go next days

      Other Medications/Supplements:
      Orange Triad Multivitamin, Magnessium citrate, Rhodiola. Keppra 500/day
       
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      Zechariah's conclusion:

      Trobalt did soften my tinnitus a bit and volume reduced slightly and a couple of times when I woke up at night, my tinnitus was pretty much gone - although it came back in few minutes.

      Juan Carlos' conclusion:

      -Trobalt lowers the tinnitus level for around 40-60 minutes after taking the pill, no doubt about this
      -Trobalt eradicates hyperacusis after some time taking it, no doubt about this
      -Trobalt totally protects you against a acoustic trauma if you take it before it. For example I took it before going to a loud pub and tinnitus didn't raise as it would if I hadn't taken it
      -Permanently lowered my tinnitus level from 3 to 2 on a scale of 1 to 10
      -Tinnitus lasting before Trobalt: 9 months
      -Trobalt duration: 4 months max dose + 2 of taper up/down
      -Level Before Trobalt: 3
      -Level After Trobalt: 2
      Read Juan Carlos' full conclusion.

      Philemon's conclusion:

      I did two rounds of trobalt at 900-1200 mg per day, the first one lasted for 2 months and half, then I stopped for two months, and started again for four months (again at 900-1200/day). The first one was the most beneficial.
      The first round has been the most beneficial and did bring my T from 3 or 4/10 to 0.5 or 1/10 on average. After two months it started to worsen again, so I started trobalt again, it then stabilized it around 2 on average, but it was not as beneficial as the first round.
      All in all, it’s not perfect and I’m not fully satisfied of course, but it’s definitely better than before.

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