Retigabine (Trobalt, Potiga) — User Experiences

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

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    1. Juan Carlos
      Whistles

      Juan Carlos Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      02/2014
      Progress Report

      Progress Report Date:
      Dec 1, 2014

      Current Retigabine Dosage:
      200x3 (my weight = 81kg)

      Current Side Effects:
      - Mild urinary retention (its getting better!)
      + On start of treatment used to pee much less with no idea of the reason and now it has been normalized, so not sure if that was because of trobalt or because something on my last trip. Anyways happy that now its ok
      -Very mild dizziness. lose a little of reflex
      - After a pill for few minutes, I feel my heartbeats stronger (anyone experienced this too ???)
      +Very mild feeling good and high after a pill for 30-60min. Kind of enjoy more whatever im doing
      + I think I eat more or I enjoy more eating, but I weight the same
      + Less stress, but not sleepy

      So: on this dose i can perfectly do everything, cicle, work, talk, gym, drive etc...

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      Started on thursday on 200x3 and didnt realize a big change on first time so i was a little disappointed, but this weekend was pretty good, specially yesterday, at some moments with little background noise didnt hear at all so I think its slowly improving over time even at this low dose, looking forward to jump next step

      In total silence still hear it and its dificult to rate on silence as I explained in some other post, but really improved as now is easier to mask

      Other Medications/Supplements:
      glutamine after gym, multi vitamin&minerals
       
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    2. NGC891
      Wishful

      NGC891 Member

      Location:
      Europe
      Tinnitus Since:
      1998 > 2008 > 2014
      Cause of Tinnitus:
      Acoustic trauma, weigh 69kg / size 1.8m
      Progress Report

      Progress Report Date:
      Dec 1, 2014

      Current Retigabine Dosage:
      200+200+200 per day/ Weigh 69kg / Start Trobalt 3 weeks ago

      Current Side Effects:
      - When I went from 150 to 200, I have not seen any increase in side effects other than the sledgehammer sensation that occurs mainly in the morning. This occurs about an hour after taking the drug. I feel like a heavy weight on the cervicales. This then dinimue low until the next dose.
      This tiredness lasts about an hour. This then dinimue low until the next dose. I fell asleep yesterday afternoon in my armchair.
      - My vertigo seem to have calmed down. In any case they gênenent me less.
      + I felt no headaches but some tingling in the upper part of the brain. It did not last but it is repeated several times. It's very hard to describe.
      + No trouble urnier (I drink plenty of water throughout the day)
      + No blurred vision
      Almost every last morning I was able to remember my dreams (as @locoyeti). Before starting the Trobalt, I rarely remember my dreams.

      Current Tinnitus Severity:
      8 out of 10

      Changes in Tinnitus:
      When I increased from 150 to 200 (before yesterday), I have a day when my tinnitus were aggressive (as before) with a peak before last night watching TV.
      Yesterday was a good day with a print tinnitus whistling less but more like white noise.
      I did not notice any difference in my hyperacusis, or the responsiveness of my tinnitus.
      Today seems to be a good day.
      We'll see what happens the next few days ....
      Overall it is positive even if I have not seen any significant change between the last increase my doses. The evolution seems to be slow may be due to the age of my tinnitus!
      I plan to continue to reach 3x300 per day if the side effects remains bearable and maybe... even 3x400.

      Other Medications/Supplements:
      Per day: Vit E: 30mg, Vit C 180mg, Zinc 15mg, Luteine 10mg, Zeaxanthine 2mg
      Yet because of my cough that my value a few sleepless nights the last week I took some external treatment with essential oils (very effective)
       
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    3. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      Progress Report

      Progress Report Date:
      Dec 1, 2014

      Current Retigabine Dosage:
      250-300x3

      Current Side Effects:
      all mention before

      Current Tinnitus Severity:
      6 out of 10

      Changes in Tinnitus:
      t getting stronger, returning to old values

      Other Medications/Supplements:
      as before
       
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    4. 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:
      Dec 2, 2014

      Current Retigabine Dosage:
      3x 100mg

      Current Side Effects:
      Slight "stupidness" , slower reaction time.

      Current Tinnitus Severity:
      1 out of 10

      Changes in Tinnitus:
      I write this an hour after taking 100mg which at the moment seems to be the peak of reduction.
      I am very sensitive to drugs and never take anything, not for headache or anything like that.
      So the efficiency might be achieved with a benzo ? I do not have the comparison?
      Keep in mind I am on my fourth day so only just started.
      Seems to be very efficient at the moment.

      Other Medications/Supplements:
      none.
       
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    5. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      Progress Report

      Progress Report Date:
      Dec 2, 2014

      Current Retigabine Dosage:
      300-300-350

      Current Side Effects:
      I dont remember what i did under a day

      Current Tinnitus Severity:
      8 out of 10

      Changes in Tinnitus:
      steady increase

      Other Medications/Supplements:
      as usual
       
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    6. Johno
      Dreaming

      Johno Member

      Location:
      Slovakia
      Tinnitus Since:
      6/07/2012
      Cause of Tinnitus:
      acoustic trauma
      Progress Report

      Progress Report Date:
      Dec 3, 2014

      Current Retigabine Dosage:
      300x300x200 mg

      Current Side Effects:
      none... but I feel right kidney from today - not pain, only very light pressure.. Maybe it isnt kidney. But Im thinking about reducing dosage back to 3x200 :(
      Sleepines after swalloving, but after some time (1-3 hours) it disappeared and I can drive a car for example.

      No urinary retention - it disappeared too.

      Current Tinnitus Severity:
      3 out of 10

      Changes in Tinnitus:
      Dosage 2x300+200 is quite effective after week, but not all the time. Most effective is after 30-60 min after swalloving a pill. This condition takes + - hour, then it gradually returns to condition before - anyway, due to some drug level in plasma, it T is stil quieter than without retigabine. I believe, than after more time of taking Trobalt, it can be even more effective. After these experience, I believe, that pottasium channel openers works - even on chronic T, induced by acoustic trauma.

      Hissing is on low level and more soft. Central Xanax induced T disappeaed. Transient spontaneous T attacks disappeared. Right ear - in most effective time segment only mild hissing and very very mild jet engine sound (T level - 1 of 10 on scale.) superstable tonal T 1180Hz volume quieter - (maybe a half), other tones very low.

      Current Tinnitus Severity scale - 3/10, but only on those most effective time segment, otherwise 4-5/10

      Other Medications/Supplements:
      as usual...
       
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    7. undecided
      Breezy

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      Progress Report

      Progress Report Date:
      Dec 3, 2014

      Current Retigabine Dosage:
      150mg three times daily, tapering down

      Current Side Effects:
      Not much at this dosage, slightly numb lips, very mild dizziness, nothing important.

      Current Tinnitus Severity:
      4 out of 10

      Changes in Tinnitus:
      Even at this low dosage it decreases the T to tolerable levels for a couple of hours. Also gives a slightly 'feel good' feeling for a while. Don't really know if it's worth it though. Still works good for sleep.

      Other Medications/Supplements:
      I might pop a Stilnox now and then to get some more sleep, I'm on leave for 3 weeks :)
       
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    8. rtwombly
      Bookworm

      rtwombly Member

      Location:
      Southeast USA
      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Unknown
      New User Information

      Gender:
      Male

      Age:
      38

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Jan 15, 2014

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

      Explain How You Got Tinnitus:
      I don't really know, but I had several illnesses in late Dec '13 and early Jan '14, and my tinnitus started sometime after. I also had a blow to my head at some point during that time and twisted my neck. I'm really not sure what the precipitating event was, or if it was a combination of factors. I have mild hearing loss in frequencies below 1000Hz.

      Is Your Tinnitus in Which of the Following?:
      Right Ear

      What Kind of Tinnitus Do You Experience?:
      Hissing, Screeching, Roaring

      Describe Your Tinnitus:
      I have two dominant tones, one a low frequency hum - somewhat like a distant foghorn - that is typically loudest and a higher pitched squeal that is lower in volume but more intrusive when I can hear it. My right ear is constantly symptomatic, but occasionally my noises do seem to migrate around in my head. Twice in 10 months it's actually moved to my right ear for awhile, then moved back after an hour or two.

      The 3/10 I select is an average between good and bad days. This is a great improvement over where it was at the start where it would range from 6-8. At my worst I had very noticeable hyperacusis. That mostly went away after I followed a course of self-trigger point massage, but it still bothers me when I hear things like dishes clanking together.

      My tinnitus tends to be masked fairly easily, but if I'm around white noise for too long my right ear tends to hiss. Because of this I make little use of masking devices, but do tend to stay in rooms with a little background noise. Before tinnitus the living room was where I read, now it's usually the kitchen, near the refrigerator.

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

      rtwombly Member

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

      Progress Report Date:
      Dec 3, 2014

      Current Retigabine Dosage:
      100mg x 3

      Current Side Effects:
      None

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      It's early enough that I hesitate to be optimistic, but after about an hour from my first dose Monday night I noticed a decrease in volume, particularly in the higher pitched whining component of my tinnitus. All the noises were more stable than usual. I woke up in the middle of the night and experienced about 20 minutes of no detectable tinnitus. When it did return it was at the same lower level.

      So far those results have been consistent. I take 2x50mg pills at 7am, 3pm, and 11pm.

      Other Medications/Supplements:
      5mg melatonin; skipped this the first night when I had that wake up. Naturally-sourced multi-vitamin powder and fish oils, lutein.
       
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    10. Albertus
      Killer

      Albertus Member

      New User Information

      Gender:
      Male

      Age:
      33

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Aug 24, 2014

      How Did You Get Tinnitus?:
      Ototoxic Drugs

      Explain How You Got Tinnitus:
      Side effect of Remeron & Paxil (Only take this 13 days and developed tinnitus)

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

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

      Describe Your Tinnitus:
      Left ear: Cricket and static tv noise, sometimes high pitch.
      Rigth ear: Pure tone 1300hz.

      The Severity of Your Tinnitus Before Starting Retigabine?:
      7 out of 10
       
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    11. 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:
      Dec 5, 2014

      Current Retigabine Dosage:
      3 x100mg

      Current Side Effects:
      None, except that I feel a bit drugged, also feel a bit hungover when I wake up, sure beats the usual killer morning T though. Maybe slight blurred vision ? Keep in mind that my dosage is still on the "starting dosage of 3x100 mg .

      Current Tinnitus Severity:
      1 out of 10

      Changes in Tinnitus:
      I still feel that one 100mg obliterates my central/brain T. At least for a few hours .
      I seem to come real close to complete silence 95% at about 20:00 or an hour after my second 100mg.
      Have to hold my ears to hear it. Did try to skip my morning dosage and it came back with a vengeance so I caved in and took my dosage and was fine after an hour or so.

      Again, always been sensitive to drugs and fall asleep if I take anything for a headache, so I dont.
      Maybe this also makes me a bit depressed which is weird as I am experiencing "silence" for the first time in almost 3 years , one would think... Maybe its because I get a chance to reflect on what I have endured?

      Current tinnitus severity is at a 1 when I am on the drug ! Not at all if I skip it,more like an 8.

      Other Medications/Supplements:
      None.
       
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    12. tomm
      Thinking

      tomm Member Benefactor

      Location:
      London, UK
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Acoustic trauma (club drumming)
      Progress Report

      Progress Report Date:
      Dec 7, 2014

      Current Retigabine Dosage:
      200mg weekday mornings, 200mg weekday evenings, 300mg x3 weekend days

      Current Side Effects:
      Occasionally strong urge to sleep but getting used to side effects.

      Current Tinnitus Severity:
      5 out of 10

      Changes in Tinnitus:
      Being a bit more consistent and sensible with my dosing.

      Tinnitus has almost completely lost it's tonal quality and only the centre of brain hiss remains until the afternoon at work when I should take a third dose but don't - T comes back a bit but I'm nervous about keeping my job and not acting spaced out for an hour. I've had one almost silent half an hour where the hiss went down too during a work morning. Fleeting.

      Weekend so far has been up and down. Under stress my T got a lot louder, morning ret didn't seem to help. ~1 hour after 4pm (2nd) dose of the day I had another almost totally silent moment with both tonal and hiss receding back very far. 30 mins and back to 5.

      Other Medications/Supplements:
      Reduction. 1g vit C 1x. 600mg NAC x2, Multi mineral (not vits as well) x1, nac-acetyl l-carnitine 400mg/alpha lipoic acid 200mg x2.
       
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    13. rtwombly
      Bookworm

      rtwombly Member

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

      Progress Report Date:
      Dec 7, 2014

      Current Retigabine Dosage:
      150mg TID

      Current Side Effects:
      None

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      I generally only have 1 tone instead of two competing tones, one low, one high, as before. Sometimes it's the low tone, sometimes the high, but increasingly I am unable to hear the secondary tone, whichever it happens to be at the moment.

      I've had periods of near silence that are more frequent and last far longer than the occasional minutes-long experiences I had previously. This morning was remarkably calm, and I had a period of extended residual inhibition after driving around for awhile this morning. In fact, I was practically unaware of my tinnitus from about 9:30am until 11:30am today. Some of that was residual inhibition, some of it was distraction due to my caring for responsibilities, some was driving and hanging out at Krispy Kreme with a rather wonderful decaf coffee and a shot of chocolate...but all of it was enabled by Potiga; I've had mornings where I did all the same things while fighting through the ringing, but none I can remember where it was masked so easily that it didn't command my attention.

      Thursday I was at my pre-Potiga level of loudness. Friday was slightly better. I'd been debating whether or not to go up in dose, and decided to do so with my Friday 11pm dose, which means I was on 100mg TID for four full days. The switch to 150mg got my levels back down.

      Honestly, the difference is subtle. It would be hard to quantify for a non-tinnitus sufferer. However, it is enough to convince me that a direct pharmacological approach (using medication to affect the brain) can work, which helps my state of mind. And no, that's not the only effect. My noises are lower in volume and annoyance, more stable, and more easily masked and therefore ignored.

      Other Medications/Supplements:
      Nothing, really. Lutein for the eyes and B-complex, a whole-food vitamin drink and supplemental D. Much less than I've been taking all along.
       
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    14. Albertus
      Killer

      Albertus Member

      Progress Report

      Progress Report Date:
      Dec 7, 2014

      Current Retigabine Dosage:
      100mgx3/day

      Current Side Effects:
      For now none.

      - No blurred visión.
      - No headache.
      - No urine problems.

      Current Tinnitus Severity:
      6 out of 10

      Changes in Tinnitus:
      I started the first day with a dose of 50 + 50 + 100 to check if I'm allergic to retigabine, etc .. after not suffer any side effects, I have been taking 100mgx3 / day until today. I have noticed a slight improvement in the chirping of my left ear, now is not so strong. For the rest the other noises persist, although the constant 13kHz tone in the right ear sometimes fades, so inspires me confidence that when increasing the dose over time will disappear completely. Tomorrow I will begin to take 150mgx3 / day for 3 days. I will report on Thursday 11 results. By now my breakthrough is able to sleep for more than six hours yesterday and today I managed to sleep 9-10 hours !! which since August I could not.

      Other Medications/Supplements:
      Omega 3 700mgx2/day, Magnesium 200mg, Lutein + zeaxanthin 30mg, Melatonine 4mg for sleep.
       
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    15. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      Progress Report

      Progress Report Date:
      Dec 8, 2014

      Current Retigabine Dosage:
      300-250-350

      Current Side Effects:
      to add to other trebling of hands, or they jump when relaxed, same with legs, and eye covers

      Current Tinnitus Severity:
      5 out of 10

      Changes in Tinnitus:
      insensitivity of T went really up, and i don't know is it med tolerance of ordinary raising up, there is no more that quiet when i take pill, and in the morning i did not say i hate this day why i did woke up, but it is starting to go in that direction, every day sees worse

      Other Medications/Supplements:
       
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    16. Juan Carlos
      Whistles

      Juan Carlos Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      02/2014
      Progress Report

      Progress Report Date:
      Dec 9, 2014

      Current Retigabine Dosage:
      300+300+ (100+100) 81kg 4am 12am 8pm

      Current Side Effects:
      same than before, didnt change. Urine hesistation improves over time
      I love to feel high aftel pill, whatever i do i enjoy: cook, order bedroom, talk with friends, cicle, Eat

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      On the time for the highest blood concentration (30 minutes long)
      -4100Hz Pure tone on my right ear. ALL the rest disappeared. No hissing, Left ear totally in silence
      I listened the tone from my ipad for Residual inhibition and i Got total silence for some seconds
      I have never heard a so-pure tone before coming from T

      Before i was 90% sure it works, because a global volume reducion can be tricky to listen on silence. But now the pattern totally changed for some minutes son now Im 100% sure its not placebo.
      Anyways i am a bit disappointed as I was expecting improvementes for longer time with this dose.

      I gonna stick to this dosage for many weeks, as it allows me to do totally normal life and cross fingers to have some lasting improvement over time

      I realized my T is totally attached to stress. My flatmate told me there was water on the wall coming from some pipe and it totally rised at that moment.
      When I go to sleep and get calmed, I start to listen the pattern described, Only pure tone on right ear.
      This makes me think that maybe my cause was stress besides some acoustic trauma on the right ear wich later expanded to brain and left ear

      Other Medications/Supplements:
       
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    17. rtwombly
      Bookworm

      rtwombly Member

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

      Progress Report Date:
      Dec 10, 2014

      Current Retigabine Dosage:
      200mg TID

      Current Side Effects:
      None

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      So far, I've not had any changes in tinnitus or side effects since my first dose. The first dose drove it down a bit and clarified the two different components - low pitch and high pitch - making one predominant while the other more-or-less slept. Since then I've been at about the same level except for day three after starting 100mg TID and day four after starting 150mg TID.

      The pattern goes:

      Day 1 - Change from a 2-4 severity to a steady 2
      Day 3/4 - Revert to a 4
      Day 4 - Increase dose

      I'm not going up in dose because of the bad days, it's just worked out that way. When I had my bad day last time, I had a good day right after, so it's not like the efficacy is dropping completely off.

      Today I went to my SOTO chiropractor, and she said that according to her tests, the medication is making my body weaker compared to what the tests showed before, but that she has treatments to help me compensate. Meeting with her next week to discuss nutritional support to get my neurotransmitter levels balanced out and she's taking into consideration changes that Retigabine may have made.

      Other Medications/Supplements:
      Lutein, Vitamin-D
       
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    18. Albertus
      Killer

      Albertus Member

      Progress Report

      Progress Report Date:
      Dec 11, 2014

      Current Retigabine Dosage:
      200mgx3/day

      Current Side Effects:
      For now none.

      - No blurred visión.
      - No headache.
      - No urine problems.

      Current Tinnitus Severity:
      4 out of 10

      Changes in Tinnitus:
      During dose escalation to 150mgx3 / day steady tone right ear is now intermittent, sometimes during the day I stop listening though he look plugging my ears with my fingers can not find it, at night is curious if support my head on the I hear pillow slightly and if I do not move this completely disappears, returning as change position in bed. In the left ear reaction engine that had been reduced by 60% and cricket is barely audible. In general evolution is quite positive. I just uploaded a 200mgx3 / day, informs the results later. I feel I'm close to getting silence. : D

      Other Medications/Supplements:
      Omega 3 700mgx2/day, Magnesium 200mg, Lutein + zeaxanthin 30mg, Melatonine 4mg for sleep
       
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    19. Albertus
      Killer

      Albertus Member

      Progress Report

      Progress Report Date:
      Dec 11, 2014

      Current Retigabine Dosage:
      200mgx3/day

      Current Side Effects:
      None.
      Perhaps an increase in appetite??

      Current Tinnitus Severity:
      4 out of 10

      Changes in Tinnitus:
      I forgot to comment on my two previous reports that my (sometimes moderate) mild hyperacusis is completely gone before to go to the movies had to use earplugs and sometimes I had to leave the room without finish watching the movie. On Sunday I was watching "Ouija" without earplugs and did not feel the slightest discomfort or increase my beeps. I am very happy to lead a normal life again. If I can get at least the noise would stay at this current level a triumph, because I can sleep well without masking and can make a completely normal life.

      Other Medications/Supplements:
      Omega 3 700mgx2/day, Magnesium 200mg, Lutein + zeaxanthin 30mg, Melatonine 4mg for sleep
       
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    20. 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:
      Dec 11, 2014

      Current Retigabine Dosage:
      1,200

      Current Side Effects:
      Feels like drunk and tiredness

      Current Tinnitus Severity:
      3 out of 10

      Changes in Tinnitus:
      Around 70% less tinnitus, gets rid of ringing sound. High frequency sound far far less

      Other Medications/Supplements:
      Just some supplements, nettle, dandelion etc...
       
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    21. Johno
      Dreaming

      Johno Member

      Location:
      Slovakia
      Tinnitus Since:
      6/07/2012
      Cause of Tinnitus:
      acoustic trauma
      Progress Report

      Progress Report Date:
      Dec 11, 2014

      Current Retigabine Dosage:
      0

      Current Side Effects:
      Left kidney pain, after interruption it is better and now is kidney ok. Right kidney was ok for all of retigabine time.

      Current Tinnitus Severity:
      5 out of 10

      Changes in Tinnitus:
      I have to interrupt my experience with trobalt, due to right kidney pain. No urinary retention, no other side effects, only sleepines after swalloving a pill (300x300x200mg). Kidney problems began after increasing dose to 300x300x200. But as i said before, those dosage is quite effective against T. My T in right ear was nearly smashed and blasted out of the sky (or cochlea :D ), left ear was also relatively quiet (half of no retigabine condition) TST attacks disappeared, central T, disappeared, hissing very weak and soft, hyperacusis most most better (nearly none). (T Severity 3 on scale... maybe 2 sometimes)

      Now, after interrupting, T returns to its pre-retigabine state, (severity 4-5-6)but, maybe it is placebo, maybe not, i have feeling, that it is slightly quieter. Maybe...

      After some regeneration, i will continue with tis experiment, but i cant say when. Maybe after happy new year. :)

      Conclusions: Potassium chanell openers looks to be very effective and promissing treatment against T and H. Retigabine is effective, but in chronic T cases with higher dosages (300+mg 3x per day).

      Other Medications/Supplements:
      as usual...
       
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    22. SoulStation
      No Mood

      SoulStation Member Ambassador

      Location:
      New York
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Noise / Possible Medication
      Progress Report

      Progress Report Date:
      Dec 11, 2014

      Current Retigabine Dosage:
      100 mg (weening off completely)

      Current Side Effects:
      Next to none on 100 mg a day. When on anything more then this I had many.
      @300 mg total a day there was slightly slower response time, very mild urinary hesitance, HAND tremor, lack of sharpness, weight gain, depression, muscle twithes.
      On 600 mg a day (my max dosage) I had: slow response time, mild urinary hesitance, HAND tremors, lack of sharpness, weight gain, depression, STRANGE low rumbling sound in my head, twitches, blurred vision, amnesia, lack of ability to think. My brain felt it was broken.

      Current Tinnitus Severity:
      4 out of 10

      Changes in Tinnitus:
      At 500-600 mg things were quieter (more like a 2/3 out of 10 at the peak concentration) and more softer in tones but the benefit did not out weigh the risks in my case. Being a guitarist with shaky hands SUCKS and the reduction was just not enough. My T is pretty much back to where it was before but I feel a bit more habituated because even T is not as bad as feeling like you can't control your brain.
      I TRULY FEEL LIKE THIS DRUG HAS NO, NONE, ZILCH, ZERO residual affect on T and after the user stops ingesting it.
      I wouldn't say don't try it but this DRUG IS DANGEROUS. So are many others, but this one is too.

      Other Medications/Supplements:
      Same as last post.
       
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    23. theekarwash
      Nerdy

      theekarwash Member

      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Noise and/or Ear Infeciton
      New User Information

      Gender:
      Male

      Age:
      19

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      May 8, 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?:
      Ringing, Hissing, Dial Tones

      Describe Your Tinnitus:
      My tinnitus is fairly faint, it's a hiss and sometimes a tone that I can only really properly hear at night time. I can hear it during the day sometimes too.

      The Severity of Your Tinnitus Before Starting Retigabine?:
      4 out of 10
       
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    24. theekarwash
      Nerdy

      theekarwash Member

      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Noise and/or Ear Infeciton
      Progress Report

      Progress Report Date:
      Dec 13, 2014

      Current Retigabine Dosage:
      50mg once a day.

      Current Side Effects:
      None yet, just took my first pill. Will update in a few days.

      Current Tinnitus Severity:
      4 out of 10

      Changes in Tinnitus:


      Other Medications/Supplements:
      None.
       
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    25. tomm
      Thinking

      tomm Member Benefactor

      Location:
      London, UK
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Acoustic trauma (club drumming)
      Progress Report

      Progress Report Date:
      Dec 13, 2014

      Current Retigabine Dosage:
      No change (200mg weekday mornings, 200mg weekday evenings, 300mg x3 weekend days)

      Current Side Effects:
      No change.

      Current Tinnitus Severity:
      4 out of 10

      Changes in Tinnitus:
      Most days this week were 3-4 with dips to 1-2 during the workday.

      Other Medications/Supplements:
      No change.
       
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    26. rtwombly
      Bookworm

      rtwombly Member

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

      Progress Report Date:
      Dec 12, 2014

      Current Retigabine Dosage:
      200mg TID

      Current Side Effects:
      None

      Current Tinnitus Severity:
      1 out of 10

      Changes in Tinnitus:
      It seems silly to come back with a new report just a few days since the last one, but I wanted to document when this happened, in the hopes it will continue or even strengthen. I had a good night and a nice morning, was in a couple of situations that are not everyday but are frequent enough that I can remember, "How did this sound last time I was here?" and the comparison was favorable.

      However, it wasn't until just minutes ago that I noticed my tinnitus had really dipped. It was practically inaudible. Some of that may have been residual inhibition after watching TV for awhile, but even now that it's picked up a bit it's LOW. So low. I've not been so close to silence since before all this began. I know some people have regressed, I know the efficacy doesn't always stay the same, in my own case it goes up and down...but the wave is flattening out. My highs are lower and my lows are barely audible.

      I know people are suffering now, but take hope. This pill just to work a LITTLE better and be a little safer. It's son or its cousin are going to do wonderful things.

      Other Medications/Supplements:
      Lutein, Magnesium, Vitamin D; IMHO, it's best to take the pills with nothing else medicinal, if possible
       
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    27. Albertus
      Killer

      Albertus Member

      Progress Report

      Progress Report Date:
      Dec 14, 2014

      Current Retigabine Dosage:
      300X3/Day

      Current Side Effects:
      For now none.

      - No blurred visión.
      - No headache.
      - No urine problems.

      - Before I start with Trobalt did blood tests and urine. This week repeat again and give it to my GP.
      - On January 9th Revision I have the ophthalmologist.

      Current Tinnitus Severity:
      3 out of 10

      Changes in Tinnitus:
      Today I started the dose of 300mgX3 / Day, I will keep for a couple of months to allow time for brain plasticity. During the days I have been in 250mgX3 / Day improvements were:
      Left ear: Motor reaction almost disappeared. -90%. Cricket is still there, but very low and sometimes disappears.
      Right ear: Constant 13kHz tone is heard very low and the night usually disappears.
      Overall my T is masked very easy and spend the whole day without thinking of him.
      Hyperacusis to completely disappeared. Before the crash of dishes in the sink, a motorcycle passing or a child crying or screaming pierced me head. Not now. I only have 11 days of treatment and hope that the 14th can enjoy the silence on occasion. I sit on the route of Mtp. Hopefully eventually get it as God willing.

      Other Medications/Supplements:
      Omega 3 700mgx2/day, Magnesium 200mg, Lutein + zeaxanthin 30mg, Melatonine 4mg for sleep
       
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    28. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      Progress Report

      Progress Report Date:
      Dec 14, 2014

      Current Retigabine Dosage:
      300*3

      Current Side Effects:
      well usual

      Current Tinnitus Severity:
      4 out of 10

      Changes in Tinnitus:
      it is getting worse, and it is worse, but sometimes after a pill it go to 2-3-4, i dont know what is happening, 2 day ago it was in some hours 11-12 you just pray to die... what happens i dont know but i will have to go down and start again.

      Other Medications/Supplements:
       
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    29. tomm
      Thinking

      tomm Member Benefactor

      Location:
      London, UK
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Acoustic trauma (club drumming)
      Progress Report

      Progress Report Date:
      Dec 14, 2014

      Current Retigabine Dosage:
      350mg weekday mornings, 350mg weekday afternoons, 400mg weekday evenings. 400x3 weekend.

      Current Side Effects:
      Strange headache without pain feeling in left hand side of head post upped weekend dose. Similar to pressure in right hand side when upped to 300mg. First 400mg dose made me practically insensible for 4 hours. Take with

      Current Tinnitus Severity:
      4 out of 10

      Changes in Tinnitus:
      Upped to 400mg this weekend. Didn't experience much difference than 300mg. Having ups and downs.

      Other Medications/Supplements:
      No change.
       
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    30. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      New User Information

      Gender:
      Male

      Age:
      36

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Aug 30, 2013

      How Did You Get Tinnitus?:
      Ototoxic Drugs

      Explain How You Got Tinnitus:


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

      What Kind of Tinnitus Do You Experience?:
      Screeching

      Describe Your Tinnitus:
      several tones 11-15khz

      The Severity of Your Tinnitus Before Starting Retigabine?:
      10 out of 10
       
      • Good Question Good Question x 1
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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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