Retigabine (Trobalt, Potiga) — User Experiences

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

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    1. papu
      Chatty

      papu Member Benefactor

      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Acoustic Trauma
      Progress Report

      Progress Report Date:
      Oct 22, 2015

      Current Retigabine Dosage:
      200/300/300 mg

      Current Side Effects:
      orange pee sometimes, a little bit of drowsiness 20 min to 1 hour after pill specially if its taken on an empty stomach.

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      I will have to say that after taking retigabine for about two months I am definitely not cured but I am a lot better, sometimes I do get random spikes up to previous levels but those only last half a day to a day and everything settles back to a 2. A level 2 for me its that my tinnitus its imperceptible during the day and only bothers me sometimes at night or in very quiet situations. I don't mask anymore and I find myself living the life I abruptly left back when I initially had my acoustic trauma. It definitely works, if its a cure or not will see. I plan to take it for two to three months more and after that if not cure will go to the aspirin approach *only when its driving me crazy*.

      Other Medications/Supplements:
      sometimes I take randomly 300 mg of Neurontin.
       
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    2. Zechariah

      Zechariah Member Benefactor

      Location:
      Finland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Acoustic Trauma
      Progress Report

      Progress Report Date:
      27 October 2015

      Current Retigabine Dosage:
      0mg

      Current Side Effects:
      None

      Current Tinnitus Severity:
      5 out of 10

      Changes in Tinnitus:
      I've been off Trobalt for a week now and my T has increased slightly and is more piercing (situation is pretty much the same than before Trobalt).

      I'll try taking Trobalt "as needed" for couple of weeks to see of it has greater effect. I'll try a dosages of 300mg to 400mg. Depending of the result - I may take another course of 6 weeks with faster taper up now when I know how my body reacts to Trobalt.

      Other Medications/Supplements:
      Multivitamin, NAC, DHA/EPA, Magnesium
       
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    3. LetyO

      LetyO Member

      Location:
      Santa Ynez, California
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Anxiety/depression/medications
      Progress Report

      Progress Report Date:
      Oct 28, 2015

      Current Retigabine Dosage:
      200 mg TID

      Current Side Effects:
      General tiredness after my afternoon dose. I take it at 5 am, 1 pm and 9 pm. Progresses throughout the day. A little more fforgetful. I also excercise and keep myself very busy which also may contribute with the tiredness. Still have bloating which is worse in the evening before I take my evening dose. Not sleeping well. Now I wake up every hour after 1 am. Trazadone not as effective anymore. Did not take any last night. Although I feel very good in the morning. Attitude is still very positive. Appetite great. I started cooking again with my husband and having fun.

      Current Tinnitus Severity:
      8 out of 10

      Changes in Tinnitus:
      I jhave been on this dose for 6 days. I was on 150mg PO TID for about 5 days with absolutely no change in T and little side effects. Seems slightly softer in the am on the 200mg. Becomes louder after I get out of bed and usually very loud in the pm. I have had a couple of quieter moments when I have woken up very early in the morning. Don't know how long they laster since I fell back to sleep. Hard to gage it since my attitude has improved and my tolerance is much highe. Side effects seem to decrease after 5-6 days after I change the dose although it has taken longer with the 200 mg TID. I will increase to 250 mg gradually beginning this weekend. Overall I have had little to no change.

      Other Medications/Supplements:
      Occasionally Trazadone 50 mg, Biotin 10,000 mcg SID
       
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    4. preslys

      preslys Member

      Location:
      Switzerland
      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      unknown
      Progress Report

      Progress Report Date:
      Nov 2, 2015

      Current Retigabine Dosage:
      none

      Current Side Effects:
      huge side effect after stoping trobalt but I didn't know if trobalt realy was the cause.

      Current Tinnitus Severity:
      1 out of 10

      Changes in Tinnitus:
      I hear only the silence even If I put my finger in my ears

      Other Medications/Supplements:
      It's been almost a month without taking medication my tinnitus do not want to come back again,we have to add this to a succes story .I told my tinnitus story to my doctor he did not beleive me he told me may be it was a natural cure . After a year and a half my tinnitus disapeared with a single dose of Trobalt and Neurotin.
       
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    5. papu
      Chatty

      papu Member Benefactor

      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Acoustic Trauma
      Progress Report

      Progress Report Date:
      Nov 2, 2015

      Current Retigabine Dosage:
      0 ran out stop cold turkey

      Current Side Effects:
      none

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      I stop taking it aprox. the 23rd of october because i ran out. New batch comes in today and debating whether to keep taking it or not since its so low (i probably will continue). Since stopping its been a 1 or 2 *barely hereable during day only noticible at night or in quiet situations. I am very happy with my trobalt experiment since i went from a 7 to a 1 or 2 and sometimes 0 for hours one week after starting treatment, and it seems that even after stopping cold turkey the benefits persists. @presleys what was the side effect that you had after stopping trobalt?

      Other Medications/Supplements:
      none
       
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    6. LetyO

      LetyO Member

      Location:
      Santa Ynez, California
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Anxiety/depression/medications
      Progress Report

      Progress Report Date:
      Nov 4, 2015

      Current Retigabine Dosage:
      300mg, 200mg/250mg, 300mg

      Current Side Effects:
      Increase in Tinnitus for 5-10 minutes after taking 300mg back to back - one at 8 pm and then at 4 am). It was a very loud hissing/buzzing sound, almost pulsating. It went back to baseline. A profound sedating feeling where I had no control over my body, I was unable to get out of bed. The first 300 mg (8:30 pm) had no side effects whatsoever. I took this dose with Trazadone. It happened at the second dose at 4:30 am. Overall a little more tired throughout the day. Urine is a darker color when I don't drink enough liquids. No more GI issues (bloating, constipation). Overall good attitude still persist. Not able to focus as well. I tend to forget/get distracted more often. My Tinnitus was lower this morning for about one hour but now back to where it usually is but is more tonal, which I prefer. Not sure I wll continue if this happens again.

      Current Tinnitus Severity:
      8 out of 10

      Changes in Tinnitus:
      None. I seem to have more louder days of the hissing/buzzing which are impossible to mask.

      Other Medications/Supplements:
      Trazadone 50 mg, Biotin
       
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    7. Mark662
      Transparent

      Mark662 Member Benefactor

      Location:
      United Kingdom
      Tinnitus Since:
      1/1988
      New User Information

      Gender:
      Male

      Age:
      47

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      May 18, 1988

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

      Explain How You Got Tinnitus:
      ENT vacuuming, stress/anxiety, acoustic trauma

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

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

      Describe Your Tinnitus:
      Ringing and white noise in left ear. Was a pure tone when it first started. Hissing is louder than the ringing now. A faint howling at times.

      The Severity of Your Tinnitus Before Starting Retigabine?:
      6 out of 10
       
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    8. Mark662
      Transparent

      Mark662 Member Benefactor

      Location:
      United Kingdom
      Tinnitus Since:
      1/1988
      Progress Report

      Progress Report Date:
      Nov 8, 2015

      Current Retigabine Dosage:
      200mg, three times a day (total 600mg a day) after tapering up over two days.

      Current Side Effects:
      None. I intend to try this for a month until my supply of this drug is used up unless I experience side effects before this time.

      Current Tinnitus Severity:
      6 out of 10

      Changes in Tinnitus:
      None

      Other Medications/Supplements:
      Multi vitamin/mineral once a day
       
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    9. LetyO

      LetyO Member

      Location:
      Santa Ynez, California
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Anxiety/depression/medications
      Progress Report

      Progress Report Date:
      Nov 11, 2015

      Current Retigabine Dosage:
      100 mg BID

      Current Side Effects:
      Slight drowsiness, increased appetite

      Current Tinnitus Severity:
      8 out of 10

      Changes in Tinnitus:
      When I was taking 300mg, 250mg, 300 mg respectively I had 2 days where my T spiked for 10-20 minutes after which my T decreased to almost 0. This lasted anywhere from 30minutes to 2 hours. What is nteresting is this only occurs if I get that drugged effect as well. On those days my tinnitus gradually increased to almost 10/10 throughout the day. I had to decrease the dose to 100mgg BID due to a dwindling supply. What is interesting is that this also happened when I took 150 mg yesterday morning. I felt mildly sedated and my T dissapeared for a bout 30 min. This does not happen every time. It occured last Wednesday, Saturday and this Tuesday. Don't know if I am having fluctuations of drug concentration in my bloodstream. I will be getting a new supply later this week and intend to taper up quickly.

      Other Medications/Supplements:
      Trazadone 50 mg, Biotin 10,000 mcg
       
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    10. Mark662
      Transparent

      Mark662 Member Benefactor

      Location:
      United Kingdom
      Tinnitus Since:
      1/1988
      Progress Report

      Progress Report Date:
      Nov 16, 2015

      Current Retigabine Dosage:
      200mg three times a day. 600mg total

      Current Side Effects:
      One severe instance - Please see below.

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      I started taking retigabine on the 6th November with one dose of 50mg. The next day I took 100mg in the morning and 100mg early afternoon. Approximately one and a half hours after the second dose I exeperienced some cognitive impairment - not knowing where to put items in the correct drawer in my kitchen, feeling slightly drugged and had trouble writing words etc. This lasted for no more than 10 minutes

      The next day I took 200mg three times, morning afternoon and evening and had similar effects as above but not as pronounced.

      The day after, I had a SEVERE REACTION to the afternoon dose (morning 200mg, afternoon 200mg). Five minutes after taking this dose I had increased heart rate/breathing, general weakness and "drugged" feeling. I tried to go upstairs and had to crawl as I had no strength. This lasted for only a few minutes and knowing another person on the forum had had a similar reaction I was prepared for this.

      I considered abandoning taking anymore of this drug, but decided to carry on. My last dose this day was 50mg then another 50mg half and hour later. I had no noticeable side effect with this dose.

      The next two days I took a lower overall dose (350mg and 500mg)and divided the doseage times more widely through the day. I am taking 50mg tablets. I experienced only mild, short-lived side effects after taking.

      On Wednesday 11th after the midday dose I experienced a "hot" feeling in the sides above the hips and wrists.

      Thursday 12th - I was back to 3 x 200mg. After the evening dose I experienced my tinnitus reducing slightly for a short period.

      Saturday 14th- After the midday dose I experienced low (the noise reduces to the extent that I had only normal "head noise" that I assume most of the population would hear if going into a very quiet room) tinnitus for about 45 minutes. The reduction started 1 hour after taking the dose. The last dose of the day, I was back to having some cognitive impairment - trouble knowing what buttons to push to operate my microwave oven. Once again, only for a few minutes. My tinnitus continued to be zero or very, low.

      Sunday 15th Low tinnitus most of the afternoon. Last dose was at 20:00 and I could hear the effect until 22:30.

      My tinnitus continues to be very low or zero, sometimes but not always, about 1 or 1 and a half hours after taking this drug and then returning to the usual level at other times. In the evening at home, I am able to go into a very quiet room to accurately assess the difference the drug is having.

      Other Medications/Supplements:
      Multivitamin/mineral once a day
       
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    11. donico
      Creative

      donico Member Benefactor

      Tinnitus Since:
      November 2015
      Cause of Tinnitus:
      Unknown
      New User Information

      Gender:
      Male

      Age:
      36

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Nov 5, 2015

      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?:
      Screeching

      Describe Your Tinnitus:


      The Severity of Your Tinnitus Before Starting Retigabine?:
      3 out of 10
       
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    12. gintas

      gintas Member

      Location:
      Lithuania
      Tinnitus Since:
      2015-05
      Progress Report

      Progress Report Date:
      Nov 18, 2015

      Current Retigabine Dosage:
      150mg-300mg perday

      Current Side Effects:
      no

      Current Tinnitus Severity:
      3 out of 10

      Changes in Tinnitus:
      i am taking 150mg before sleep. and 0-150 mg per day. as i am working as saxophone music teacher i taking 100mg before a lessons. i am afraid to taper up ( maybe i am wrong) to bigger doses because my Tis reactive. and it is reactivating after a music lessons. so a dont know if i took big doses ( maybe then i build up tolerance for big doses) as most users it will be useful for me as lessons diminish trobalt.
      aoverall it is much more better/possible to live on that dosage than before trobalt!

      Other Medications/Supplements:
      sometimes cinnarizine
       
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    13. LetyO

      LetyO Member

      Location:
      Santa Ynez, California
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Anxiety/depression/medications
      Progress Report

      Progress Report Date:
      Nov 19, 2015

      Current Retigabine Dosage:
      0 - waiting for refill

      Current Side Effects:
      None. Urgency to urinate returning as well as diarrhea. Able to sleep better with the Trazadone. Last couple of nights fell asleep without anything although did not stay asleep. Some anxiety returning. I can tell that the medication is pretty much out of my system.

      Current Tinnitus Severity:
      7 out of 10

      Changes in Tinnitus:
      Less hissing/buzzing, more tonal although still relatively intrusive.Too soon to tell if this is a permanent effect. Still loud (8-9/10) upon waking up and decreases after 1-2 hours.

      Other Medications/Supplements:
      Trazadone 50 mg, Biotin
       
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    14. Tony Joy
      Musical

      Tony Joy Member

      Location:
      Bristol UK
      Tinnitus Since:
      September 2014
      Cause of Tinnitus:
      don`t know
      Progress Report

      Progress Report Date:
      Nov 30, 2015

      Current Retigabine Dosage:
      3 x 400 mg

      Current Side Effects:
      After a slow build up 3 months ,I only have a mild sedated feeling for 2-3 hours after taking the dose

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      From an unbearable 8-9 has slowly reduced with spikes to a 2-3,spikes usually from having a stressful day.,or from alcohol,or driving.I will taper down for Christmas,and see what happens,but so far very pleased with the results.I haven`t had the water retention problems ,if anything the opposite,but orange pee yes,which isn`t a problem

      Other Medications/Supplements:
      Just zapain for aches
       
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    15. LetyO

      LetyO Member

      Location:
      Santa Ynez, California
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Anxiety/depression/medications
      Progress Report

      Progress Report Date:
      Dec 2, 2015

      Current Retigabine Dosage:
      300mg TID

      Current Side Effects:
      Sedation, constipation, cognitive impairment (increase loss of short term memory), increased appetite (developing quite the gut), good mood - no anxiety or depression although definitely not manic.

      Current Tinnitus Severity:
      8 out of 10

      Changes in Tinnitus:
      When I restarted Trobalt 200mg on the 22nd, along with Gabapentin 300 mg TID, I experienced moderate sedation and T at 0-2/10 for 4 days when taking this combination (pure bliss but I knew that this would not last based on previous user experiences). On the fifth day I had a spike of the hissing/buzzing variety in the 8-9/10 range. I still wake up every morning with very loud T (8/10), even on the quiet days. My T is either lower (4-5/9) on most days. Today it is cental. On other days it is either in the right or left side of my head with decreases the loudness and more of a pure tone. I don't know how much the sedation and habituation may be affecting my perception. Today, unfortuately I am experiencing a spike at 8-9/10. Otherwise seems to gradually be decreaseing. Won't really know until I have been on this long enough.

      Other Medications/Supplements:
      Gabapentin 300mg - 600mg TID, Trazadone 50 mg for sleep
       
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    16. Mark662
      Transparent

      Mark662 Member Benefactor

      Location:
      United Kingdom
      Tinnitus Since:
      1/1988
      Progress Report

      Progress Report Date:
      Dec 6, 2015

      Current Retigabine Dosage:
      Stopped on 1st December

      Current Side Effects:
      Sometimes urinary retention first thing in the morning with slight aches in bladder?

      Current Tinnitus Severity:
      6 out of 10

      Changes in Tinnitus:
      After 27 days on retigabine, I have now completed the course of tablets I had. Average of 600mg total per day. I had inconsistent effects after the first week - sometimes the t level was lower about an hour after dosing, sometimes there was no change. On 8 different occasions on seperate days, I noted a lowering of t. The noise appeared to be being "diluted". The tonal quality varying in intensity if I listened hard in a quiet room. The effect lasted for a few minutes to about half an hour. I also felt an anxiolytic effect at times, this resulted in the most significant lowering of t. When the t was at a low level, my brain was "searching" for the noise.

      I also noted an animated, mirror-image patterning if I closed my eyes. This was apparent shortly after dosing and was often accompanied by minor co-ordination problems.

      For the last two days I increased the dose to 900mg total. There was no increased effect on tinnitus at this dosage level.

      Now I have stopped, my tinnitus is back to the same level I had at the start.

      I would not wish to take this drug long term. The effect it had on my tinnitus would not make it worthwhile and the side effects can be unpleasant.

      In conclusion, this drug does "something" in lowering my tinnitus temporarily. It is a short-lived effect and inconsistent.

      Other Medications/Supplements:
      Multimineral and others now I have stopped taking retigabine
       
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    17. 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 9, 2015

      Current Retigabine Dosage:
      0, stoped 10 days ago after 15 monts, dosages were 750-1200mg

      Current Side Effects:
      lost visual side effects. mental side effect persist, problems speaking persist, problem with orentatation persis, retina color change permanent, but very little spot

      Current Tinnitus Severity:
      8 out of 10

      Changes in Tinnitus:
      none, i became immune on Trobalt

      Other Medications/Supplements:
      sleeping pill+herbs
       
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    18. 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 18, 2015

      Current Retigabine Dosage:
      200 mg x 2 daily

      Current Side Effects:
      same dizzy, slurred speech, former prostate problem vanish and no dark urine, no sight problems. Better sleeping, slower thinking.

      Current Tinnitus Severity:
      3 out of 10

      Changes in Tinnitus:
      At this moment when i am under trobalt it is this lvl. I got new worsening of tinnitus to lvl 13. that is 8th worsening in last 2 years. I am person who think in 6 directions and i suppose my brain makes stress and therefore my t get worse + 3x meds, paracetamol and corticosteroid injection) . I report effect as of this second, later it will shift. Better sleep, i did not sleep last 15 days, especially after worsening. my tinnitus worsen around 450% total in 2 years.

      Other Medications/Supplements:
      Keppra, I did not notice any lowering of t, i used it 3 weeks, it made me angry and dizzy, now is no side effects. I did not notice any effects. my daily dosage is 1000 mg.
       
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    19. LetyO

      LetyO Member

      Location:
      Santa Ynez, California
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Anxiety/depression/medications
      Progress Report

      Progress Report Date:
      Dec 21, 2015

      Current Retigabine Dosage:
      300mg, 200mg, 300mg

      Current Side Effects:
      Slight dizziness, tiredness at the end of the day, slight blurry vision which worsens at night, mild bloating/gas. Urine color has changed from yellow to orange. Short term memory loss and slight decrease in cognitive function which appears to be getting better

      Current Tinnitus Severity:
      6 out of 10

      Changes in Tinnitus:
      Less spikes, decrease is hissing, buzzing, more tonal. Variation in tone throughout the day. Sometimes experience total silence after my 4 am dose of 300mg. Initially increased my dose from 200mg TID to 300 mg TID. Experienced moderate sedation, bloating/constipation, moderate decrease in short term memory. Decreased dose back to 200mg TID and increased 100mg every 5-7 days. Staying at this dose during the holidays. Then will increase to 300mg TID. Overall improvement. I am where I was 11 months ago. Have not had a 8-9/ 10 day for over a week which is rare. Overall improvement.

      Other Medications/Supplements:
      Trazadone 50 mg, Biotin 10,000 mcg.
       
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    20. David007

      David007 Member

      Tinnitus Since:
      JUNE 2014
      Cause of Tinnitus:
      ACOUSTIC TRAUMA
      New User Information

      Gender:
      Male

      Age:
      33

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Jun 21, 2015

      How Did You Get Tinnitus?:
      Acoustic Trauma

      Explain How You Got Tinnitus:


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

      What Kind of Tinnitus Do You Experience?:
      Ringing

      Describe Your Tinnitus:
      Ringin in the Right Ear

      The Severity of Your Tinnitus Before Starting Retigabine?:
      9 out of 10
       
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    21. LetyO

      LetyO Member

      Location:
      Santa Ynez, California
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Anxiety/depression/medications
      Progress Report

      Progress Report Date:
      Jan 6, 2016

      Current Retigabine Dosage:
      100mg BID - TID

      Current Side Effects:
      None

      Current Tinnitus Severity:
      9 out of 10

      Changes in Tinnitus:
      On 12/24/15 increased dosage from 300mg. 200mg, 300mg to 400mg, 300mg ,300mg. Had an episode which was most likely a seizure after taking 300mg in the afternoon. I meant to take 200mg but was not thinking clearly. My fault for stupidly increasing the dose so rapidly. I was hoping that by taking 400mg at night I might eliminate my T in the morning. Up to that point I was doing well. Tinnitus was 4-5/10 and no more hissing buzzing for almost two weeks. Minimal sedative effects. After the episode I began to taper off slowly. After I took one 200mg dose one evening I experienced a spike within 30 minutes. I am now experiencing loud hissing T almost every other day. I seemed to have developed an increased sensitivity. Most of the side effects are resolving. Still have some short term memory loss but I credit that to the distraction from loud T. Not sure what to do next. I seemed to have changed the balance in my CNS somehow. I think I did best when my dosage was 200 mg TID. I found that my headaches only respond to Gabapentin. Used in human and animal medicine for neuropathic pain (weak anticonvulsant) so figured it would help my headache. No longer feel any sedation when taking Gabapenitin at 300 mg.

      Other Medications/Supplements:
      Trazadone, Biotin and occasional Gabapentin 300mg (for headaches)
       
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    22. LetyO

      LetyO Member

      Location:
      Santa Ynez, California
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Anxiety/depression/medications
      Progress Report

      Progress Report Date:
      Jan 17, 2016

      Current Retigabine Dosage:
      200mg, 100mg/200mg, 200mg

      Current Side Effects:
      Mild sedation, better bladder control

      Current Tinnitus Severity:
      6 out of 10

      Changes in Tinnitus:
      Less days with really loud T. Now hissing/buzzing more tolerable. It is softer and not as loud. Right now it varies considerably since I have been adjusting the dose since I had the seizure. I had 1 1/2 weeks with no spikes which is a significant improvement. Overall less side effects. Less mood enhancing effects so now experiencing some anxiety and get stressed more easily but T does not get worse during these times.

      Other Medications/Supplements:
      Trazadone 50mg, Biotin, Gabapentin occasionally (for headaches)
       
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    23. 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:
      Jan 31, 2016

      Current Retigabine Dosage:
      600mg to 800mg per day

      Current Side Effects:
      Stupidity mostly :p

      Current Tinnitus Severity:
      7 out of 10

      Changes in Tinnitus:
      Not much to be honest , but its highly variable .
      Weird thing is that on really bad days Trobalt does almost nothing.
      On good days it can keep T low throughout the day.

      I feel like I might be getting a bit more used to the drug and the last few days I have been experiencing what I read about Trobalt lowering T mostly in the 40-60 min after taking it.
      But I might just be having a temporary spike these days?

      I have really great experience with this drug , sometimes (especially early on) it worked very well.
      I am sort og planning to increase my dosage to the full amount , for maybe a month and then I will consider my Trobalt trial over.

      Hopefullt I will have some permanent reduction although ...today, right now , I am not very hopeful.

      Other Medications/Supplements:
      None.
       
      • Informative Informative x 6
      • Helpful Helpful x 1
    24. LetyO

      LetyO Member

      Location:
      Santa Ynez, California
      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Anxiety/depression/medications
      Progress Report

      Progress Report Date:
      Jan 31, 2016

      Current Retigabine Dosage:
      300mg, 100mg/200mg, 200mg

      Current Side Effects:
      Mild sedative effect. Fainted one when I was on 200mg TID. Had not eaten much and took it on an empty stomach. Blood pressure dropped. I was up again 15-20 minutes later. Has never happened before on this dose. Good appetite, better short term memory, occasionally discolored urine (my last urinalysis a week ago was completely normal). Better bladder control :) I noticed that when I skipped a dose my hands would shake which made it hard to work.

      Current Tinnitus Severity:
      6 out of 10

      Changes in Tinnitus:
      Overall decrease in loudness with an occasional spike. Had a pretty quiet day 2 days ago. I took 300mg, 100mg ,200mg that day. Next day was louder but then decreased in the afternoon. Made the mistake of lying down which caused it to spike to previous levels. I have only had one night with low T when I woke up. It seems to be a gradual improvement although not consistent. I am having more days of soft hissing which annoys me more than when it's more tonal. These days are harder to mask. I'm not habituated but find that I tolerate these lower levels much better. Also I have been taking lower doses in the afternoon on days that I work. It is effective in lowering T in my case and no doubt affects that part of the brain that causes T. I'm trying to figure out a better dosing schedule which has greater effect.

      Other Medications/Supplements:
      Same
       
      • Like Like x 4
      • Informative Informative x 3
    25. 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 2, 2016

      Current Retigabine Dosage:
      600mg to 800mg per day

      Current Side Effects:
      Stupid.

      Current Tinnitus Severity:
      1 out of 10

      Changes in Tinnitus:
      There you go , highly variable . 7 the other day , now a 1.
      T is always variable to me so I have no idea if its the Trobalt or what although I definitely can feel the effect of Trobalt on my T.

      Other Medications/Supplements:
      None.
       
      • Like Like x 6
      • Informative Informative x 3
      • Helpful Helpful x 1
    26. papu
      Chatty

      papu Member Benefactor

      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Acoustic Trauma
      Progress Report

      Progress Report Date:
      Feb 2, 2016

      Current Retigabine Dosage:
      0

      Current Side Effects:
      none

      Current Tinnitus Severity:
      2 out of 10

      Changes in Tinnitus:
      I started trial on august 17 approximately. Stop two times for a week because i ran out of trobalt. Took it continuosly the rest of the time to a maximum o 1100 mg per day. Tinnitus went down inmmediatly (in about a week, i taper up quickly which in hindsight i dont suggest doing) when i started taking about 600 mg (200 mg per take). Had to stop on december 17 because of eye side effects. Overall tinnitus reduction 7 to 2 in those months. So far february 02 i am doing well. Some random skipes related to stress or work for at most 1 or 2 hours but on average doing very well. Sorry i have not posted before but i want it to give it at least a month and half to see if the lowering stick and so far so good.

      Other Medications/Supplements:
      No.
       
      • Like Like x 10
      • Informative Informative x 3
      • Optimistic Optimistic x 2
    27. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      New User Information

      Gender:
      Male

      Age:
      28

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Oct 4, 2015

      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, Hissing

      Describe Your Tinnitus:
      Reactive T (right ear)/ Hyperacusis / Ear pain/ Permanent headache

      The Severity of Your Tinnitus Before Starting Retigabine?:
      5 out of 10
       
      • Informative Informative x 3
      • Like Like x 2
    28. medal

      medal Member

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      acoustic trauma
      New User Information

      Gender:
      Male

      Age:
      24

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Dec 31, 2008

      How Did You Get Tinnitus?:
      Acoustic Trauma

      Explain How You Got Tinnitus:


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

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

      Describe Your Tinnitus:
      My Tinnitus used to be only tonal in my right ear. 3 months ago I perforated my eardrum, which brought my tinnitus on a whole different level. I got a buzzing sound with it now and last but not least it got reactive in my head and right ear to external sounds.

      The Severity of Your Tinnitus Before Starting Retigabine?:
      8 out of 10
       
      • Informative Informative x 2
    29. uae96
      Thinking

      uae96 Member

      Tinnitus Since:
      6/14/2015
      Cause of Tinnitus:
      Noise induced
      New User Information

      Gender:
      Male

      Age:
      19

      How Long Have You Suffered From Tinnitus? (Date of Onset):
      Jun 15, 2015

      How Did You Get Tinnitus?:
      Acoustic Trauma

      Explain How You Got Tinnitus:
      Probably from my extremely loud life style ranging from rally buggies , jet skies , loud music in the car and flying planes

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

      What Kind of Tinnitus Do You Experience?:
      Ringing

      Describe Your Tinnitus:
      It's a very strong hiss on both ears and like a pure tone sound coming from my head / left ear it's hard to describe I can hear it almost everywhere except on restaurants and malls

      The Severity of Your Tinnitus Before Starting Retigabine?:
      7 out of 10
       
      • Informative Informative x 3
      • Like Like x 1
    30. Mithrandir
      Ape-like

      Mithrandir Member

      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Acoustic Shock Disorder (TTTS)
      Progress Report

      Progress Report Date:
      Feb 16, 2016

      Current Retigabine Dosage:
      150 TID

      Current Side Effects:
      + eat more
      + vivid dreams
      + anxiolytic effect

      no bad side effects for the moment

      Current Tinnitus Severity:
      4 out of 10

      Changes in Tinnitus:
      no effect on H, less fulness maybe, T soften maybe

      Other Medications/Supplements:
      ginko, spirulina
       
      • Informative Informative x 4
      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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