Retigabine (Trobalt, Potiga) — User Experiences

[undecided]

Progress Report

Progress Report Date:
May 4, 2015

Current Retigabine Dosage:
200 mg every night before sleep

Current Side Effects:
Nothing

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
It's been about two months that I have been using RTG once daily, before sleep.
I have to say that my T is getting generally softer and more quiet as time passes by. Still have some bad days but even these don't sound bad.
I don't know if I should attribute that to RTG or to the fact that I am generally less conscious of T and getting much better sleep.
Then again, I might be getting better sleep because of RTG.
I plan to take it for another month and then call it quits. If someone asked me if RTG has been helpful, I'd say a definite YES.
It's a hard drug to get used to, the initial side effects are a bit nasty and take a lot of time to get used to.
But I believe that at the end of the day, the users of this forum have actually found something that works for tinnitus. Maybe not a permanent cure, but it has been a worthwhile experiment.
My advice to anyone with hardcore T would be to try this stuff. If you don't get results at first - play around with the dosages.

On a side note. I've been on this stuff since October (with a one month break in January). No purple fingernails, nothing wrong with the eyes, no kidney or liver issues - I poop and pee like a baby.

Other Medications/Supplements:
Magnesium daily, Zinc ever other day.

 

[SteveToHeal]

New User Information

Gender:
Male

Age:
45

How Long Have You Suffered From Tinnitus? (Date of Onset):
Nov 15, 2013

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

Describe Your Tinnitus:


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

 

[SteveToHeal]

Progress Report

Progress Report Date:
May 4, 2015

Current Retigabine Dosage:
150mg TID

Current Side Effects:
Slight tingling in left pinky finger and then in right. Slight pain in chest but could all be because I am hyper-aware of taking RTG for the first time. Took 150mg @ 3pm, again same dose @ 9pm.

Current Tinnitus Severity:
8 out of 10

Changes in Tinnitus:
None

Other Medications/Supplements:
Omegas, Eye health supplements, Magnesium, drinking lots of water.

 

[Christian78]

Progress Report

Progress Report Date:
May 4, 2015

Current Retigabine Dosage:
3*350

Current Side Effects:
amnezia, change of retina color in left eye

Current Tinnitus Severity:
9 out of 10

Changes in Tinnitus:
rtg helps some times to lower tinnitus, sometimes to be drugged and cut any emotions

Other Medications/Supplements:
sleeping pills

 

[Juan Carlos]

Progress Report

Progress Report Date:
May 5, 2015

Current Retigabine Dosage:
0

Current Side Effects:
0

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
Yesterday i did o little trial. I took 200mg Trobalt + 500mg Keppra. I wanted to be sure about the assets i heard from dannyboy and 1mw.

None of both are true in my case. T did not disappear as Danny stated, and also T did not went up as 1MW said in 1 post.

The result was like if i was taked around 300mg of Trobalt, so I think that maybe the combination actually potentiates the effect of Trobalt, wich is a good new because we can get more benefit from trobalt with less long term side effects from it.
So, the T reduction was like if I taken 300mg and also the highness effect, while actually i taked only 200mg with half empty stomach.
This morning i woke up with very very low T

so now, for your benefit, you know that this combination is NOT ototoxic, I hope more people give it a try and confirm that Keppra potentiates the Trobalt effect on T

Other Medications/Supplements:

 

[SteveToHeal]

Progress Report

Progress Report Date:
May 8, 2015

Current Retigabine Dosage:
250mg 3TID

Current Side Effects:
right kidney pain @ my back and at my front
pain under right armpit (might not be associated to RTG)
a bit of pain under left armpit (might not be associated to RTG)
pain in right groin (prob not be associated to RTG) - was getting it b4 RTG
left abdominal pain (prob not be associated to RTG)
urinary retention

Current Tinnitus Severity:
8 out of 10

Changes in Tinnitus:
Went right down for about 5 mins @ 150mg (right ear mainly to a 0 and left to a 2 - no head buzzing)
Went right down for about 15 mins @ 250mg (right ear 0 and left to a 1 - no head buzzing)

Other Medications/Supplements:
Eye health supps
Lots of water
Magnesium
Omega 3 / 6

 

[David King]

Progress Report

Progress Report Date:
May 11, 2015

Current Retigabine Dosage:
I've been on 6x100mg a day for 8 days (2-2-2) and have now rapidly tapered off for two days.

Current Side Effects:
None.
Since I have not experienced any of the adverse effects that others have mentioned (and not any other for that matter) my physician and I have decided to increase the dosage to first 3-3-3 and potentially 4-4-4 (x100mg), provided there are no side effects.

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
None. I would say there have been normal fluctuations.

Other Medications/Supplements:

 

[Danny Boy]

Progress Report

Progress Report Date:
May 12, 2015

Current Retigabine Dosage:
400-800

Current Side Effects:
Drunk feeling.

Current Tinnitus Severity:
1 out of 10

Changes in Tinnitus:
A reduction of 80% and it seems like it's a permanent one. I also take keppra and my hyperacusis is cured as is my reactive tinnitus.

Other Medications/Supplements:
4000mg keppra and 333mg+333mg of campral three times a day.

 

[nills]

Progress Report

Progress Report Date:
May 12, 2015

Current Retigabine Dosage:
3x 200 = 600

Current Side Effects:
wobbly legs, slurred speech (happened once to the S - went Ssss like if my brain pauzed a moment but my body went on bit of highness, uplifted mood and trails in vision (like an echo of light) ... They call it adverse effects but I kind of like them. But you don`t want to know how many spelling corrections I had to do before posting this.

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
as we speak I would say a 3 but there have been better moments like 2/10 and even a 1/10 and there have been very loud morning wake ups.

The experience of T goes in waves. The action of the medicine also has no reliability. one day 100mg does nothing. The other day your of your head dancing in the living room with near complete silence. One time you take 100mg and it hits you in 20 minutes, another time 200mg`s and this one suddenly comes 1.5 hours later.

It is very sensitive to empty stomach also.

I will continue to raise my mg`s this week, I just arives at 3x200 today ... yesterday was 500 still. So slowly build up to 800 mg`s so I can have a 300 mg in one take. This is coming closer to the better dosages.

Other Medications/Supplements:
multi vitamin, iron, oxy-powder, magnesium

 

[Christian78]

Progress Report

Progress Report Date:
May 23, 2015

Current Retigabine Dosage:
350-400*3

Current Side Effects:
amnesia, retina color change spot on left eye, sweet crawling from 22:30-4:00, most chocolate, but even french fries will do

Current Tinnitus Severity:
8 out of 10

Changes in Tinnitus:
well honestly i get to sleep 6h, sometimes if i combine afternoon dosage and go sleep 6 go up 2-3 h watching some tv show on computer, and then continue 7h more

Other Medications/Supplements:
sleeping pill

 

[Christian78]

Progress Report

Progress Report Date:
Jun 7, 2015

Current Retigabine Dosage:
350-500*3

Current Side Effects:
druged hi helping sleep over part of days wit tinnitus

Current Tinnitus Severity:
10 out of 10

Changes in Tinnitus:
it became worse last days, retigabine does not have effect on t 0.01% but they make me drugged so i can survive day

Other Medications/Supplements:
what ever can kill me to survive day

 

[Danny Boy]

Progress Report

Progress Report Date:
Jun 13, 2015

Current Retigabine Dosage:
0

Current Side Effects:
None

Current Tinnitus Severity:
1 out of 10

Changes in Tinnitus:
During taking retigabine (was on it for 8 months) tinnitus went from a 10 to 0-1 and has stayed low after tapering off. Been now off retigabine for 5 days.

Other Medications/Supplements:
Keppra, campral.

 

[preslys]

New User Information

Gender:
Male

Age:
34

How Long Have You Suffered From Tinnitus? (Date of Onset):
May 30, 2015

How Did You Get Tinnitus?:
Unknown

Explain How You Got Tinnitus:


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

What Kind of Tinnitus Do You Experience?:
Hissing

Describe Your Tinnitus:


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

 

[preslys]

Progress Report

Progress Report Date:
Jul 1, 2015

Current Retigabine Dosage:
200*200 /day

Current Side Effects:
None

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
Hi gus
It has been only three days that I take trobalt ,Ican tell you this drug has a positive effect on tinnitus. During the last two days I felt that my short electrical circuit in my head has been restored
and today is my best day since my tinnitus started in 05/2014 Now I hear this ssssssssssssssssssss in my left ear but it doesn't bother me at all
yes trobalt makes my tinnitus lower.

Other Medications/Supplements:
None

 

[nills]

Progress Report

Progress Report Date:
Jul 21, 2015

Current Retigabine Dosage:
250*200*200

Current Side Effects:
lightheaded, rapid eye movement/hard to focus,wobbly legs, increased thought processes, mood uplifted ... all these last for a short time frame from usually 20min - 1 hour after intake onwards ... also it took me 5 times to write onwards right - i`m on a 200 dose for about 1.5 hours now. So scattered thoughts and fuzzy concentration.

Current Tinnitus Severity:
6 out of 10

Changes in Tinnitus:
little changes happen every day up and down but in general there have only been few moments of more quietness or real change. But nothing lasts long. All in all not much happening still at this dose of 650mg a day.

Other Medications/Supplements:
5htp, camucamu, spirulina, ayurvedic booster

 

[snow86]

New User Information

Gender:
Male

Age:
28

How Long Have You Suffered From Tinnitus? (Date of Onset):
Dec 4, 2013

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

Explain How You Got Tinnitus:
haering loss / stress / dental work / drugs

Is Your Tinnitus in Which of the Following?:
Head

What Kind of Tinnitus Do You Experience?:
Ringing, Hissing, Screeching, Whooshing, Roaring, Pulsing, Buzzing, Dial Tones

Describe Your Tinnitus:
Extreme T: More than 6 different Sounds. Low Freq. alternating sounds i.e. washing machine, turbine, engine, electric kettle, constantly changing + several high pitched "eee" sounds. Vibrating feeling in the head at times.

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

 

[snow86]

Progress Report

Progress Report Date:
Jul 21, 2015

Current Retigabine Dosage:
400mg

Current Side Effects:
- skin itching (gone)
- feeling hot at times
- somtimes bit of pressure in bladder
-light stabbing pains the chest at times

not sure if those side effects are from Trobalt: Ive been experiencing very much stress in the last days, also tapering down my Antidepressant to lower dosage (Mirtazapin)

Current Tinnitus Severity:
10 out of 10

Changes in Tinnitus:
None. But just started with tapering up
Day 1 : 2x 100mg
Day 2 2x 100mg
Day 3: 3x 100mg
Day4: 1x200mg. 1x100, 1x100
Day 5 : ....

Trying to reach "therapeutic Dosage" of 400mg taken at once to see if Trobalt can give relief if you have one of the worst T possible.

Other Medications/Supplements:
Mirtazapin 15mg (going 7,5mg since taking Trobalt)

 

[Geo]

New User Information

Gender:
Male

Age:
25

How Long Have You Suffered From Tinnitus? (Date of Onset):
Nov 24, 2012

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

Explain How You Got Tinnitus:
acoustic trauma months before, but came to light with heavy stress i was under for a week.

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

What Kind of Tinnitus Do You Experience?:
Ringing, Hissing, Static, Crickets, Screeching, Whooshing, Pulsing, Ocean Waves, Buzzing, Dial Tones

Describe Your Tinnitus:
very very reactive seems it changes up on me daily.. and severe H with it..

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

 

[Geo]

Progress Report

Progress Report Date:
Jul 21, 2015

Current Retigabine Dosage:
500mg

Current Side Effects:
mostly none.. just sometimes when getting up my legs feel wobbly and i get sleepy towards the afternoon which helps me sleep as my sleep was very very hard to try before potiga..

Current Tinnitus Severity:
10 out of 10

Changes in Tinnitus:
none as of yet..

Other Medications/Supplements:
none..

 

[nills]

Progress Report

Progress Report Date:
Aug 4, 2015

Current Retigabine Dosage:
0 ... tapered from 3x400 to 0 in 4 days - now `clean` 2 days

Current Side Effects:
at the moment none - But I have had major side effects in the sense that retigabine distorted or changed my sense of reality, and perception. Also people around me noticed difference. Common; wobbly feet, highness, elevated mood, fast eye movements, amnesia, dialectic features like unable to write and switching letters and numbers. - Less common, irritability, up front - straight forward, feelings of anger. - rare - episode where i though I would pass out when trobalt hit me. complete loss of sense of moving body and standing straight, cognitive functions completely distorted - shaky hands, jaw clenching, speed up thought processes, difficulty making decisions because unable to sense what a `normal` person would do. ... drug contains some sort of ampthetamine ... causing these side effects. physically I felt okay taking retigabine. Except for darkened urine didn`t notice anything else (as if all the rest isn`t enough

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
there has been many different stages in the changes happing in the T awareness. At the moment I only notice it when I search for it in noisy places or when i`m at home in silent space. Yesterday i was very annoied with the sound for most part of the day, would rate it a 5-6. But this morning awoke to very peaceful morning. 1-2/10 T is still reactive to foods and sound but so much more silent and different in sound quality.

Other Medications/Supplements:
5 HTP

 

[papu]

New User Information

Gender:
Male

Age:
48

How Long Have You Suffered From Tinnitus? (Date of Onset):
Mar 7, 2015

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

Describe Your Tinnitus:
left ear monotonal pure eeeeeeeeee tone aproximatly at 6000 hz
right ear dual tone around 8000 hz

The Severity of Your Tinnitus Before Starting Retigabine?:
6 out of 10

 

[papu]

Progress Report

Progress Report Date:
Aug 9, 2015

Current Retigabine Dosage:
200 mg three times a day

Current Side Effects:
Wednesday 100 mg three times a day nothing
Up dosage to 200 mg three times a day at 2:00 pm thursdaydrowsiness (greater if i take the pill on an empty stomach) and got a drunk feeling sensation. Sensation lasted 20 minutes and tinnitus went down to 1 for an hour and came back up to a 4. Took 200 mg at 10 pm and can not tell you anything about it (slept like a log). Woke up at 4 am to pee to a very low T and decided to take 100 mg because of work in the morning. Friday at 12 pm tool another 200 mg got very woozy and T got down to 0 yes 0, cry like a newborn baby from hapiness, it lasted for like 30 minutes and went up again slowly. From there to right now sunday 9:14 pm its been up and down and changing qualities from an unpleasent eeeeeeee to a more welcome chirpy sound. Last pill about 1 hour ago (200 mg) and i no longer felt drowsy so i probably go up to 300 mg tomorrow. So far happy with the results and hoping that they will carry on even after i stop taking the pill.

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
Up (never above my base of 6) and down mostly better in general around a 3 to 4 and after pill a welcome 0 to 1 for half and hour.

Other Medications/Supplements:
none

 

[papu]

Progress Report

Progress Report Date:
Aug 11, 2015

Current Retigabine Dosage:
200 mg three times a day

Current Side Effects:
none

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
Goes almost to zero (not perceptible unless i plug my ears and even then is hard) 20 to 30 minutes after the pill. Then it creeps up slowly. With the the morning dose (3 to 4 am) it stay low (1/2) for at least 4 to 5 hours, at the 12 pm it comes up to a 4 after an hour or two, at the 8 pm pill it stay down for about 2 hours and starts to go up. Hoping time and increase in dose will last longer and maybe make it permanently.

Other Medications/Supplements:
none

 

[papu]

Progress Report

Progress Report Date:
Aug 12, 2015

Current Retigabine Dosage:
200 mg 3 to 4 am, 300 mg 12 pm, 200 mg at 8 pm

Current Side Effects:
drowsiness (getting less and less drowsy with each pill)

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
I would say generally that my tinnitus is down and more tolerable. Its a little bit like a rollercoster, its constantly changing between chirping and eeeeee tone. Sometimes as low as a 1 and sometimes as high as a 6. In average i will put it between 3 and 4. One interesting fact is that i lost that beautiful 0 moment that started 20 minutes after the pill and lasted for 20 minutes. I don't know if its because i reach steady state or the just my body is become resistant. I am increasing the dose by 200 mg in the next three to five days to see if i can get it back.

Other Medications/Supplements:

 

[papu]

Progress Report

Progress Report Date:
Aug 15, 2015

Current Retigabine Dosage:
200, 250 and 250 mg a day

Current Side Effects:
drowsiness that last from 10 to 20 minutes after pill

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
more stable now between 2 and 3 sometimes it goes as low as a 1. Had a few times after 6 to 7 hoursof taking the pill go up to 5 or 6 in rare ocassions.

Other Medications/Supplements:
none

 

[Juan Carlos]

Progress Report

Progress Report Date:
Aug 18, 2015

Current Retigabine Dosage:
0

Current Side Effects:
0

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
First of all , im telling my experience of last friday, im not giving any advice ok?

Just to put you in context, im not sure where did I post my experience in a mini-concert in a pub, it was near March/2015 i think.
Briefly, I was in a mini-concert, with my ear-plugs (flat frquency) and after 30 minutes or less, my T went super high like never before, i heard it loud in the concert and of course in the street walking back to the hotel. next morning was a little better ( i took only 100mg trobalt because i had a beer so didnt want to risk mixing them)

I said that story again just to show that my T is (as all here) reactive to loud sounds.
Now comes the experience of last friday night 14th of August of 2015:

Well finally i have one free night with no compromise with anyone and felt like really wanted to party, even none of my friends could come. That night i decided to protect my ears, not only with the earplug but also with trobalt. As this was planned before going party, i didn't drink any alcohol at all. That's a pity because to get in the club you pay 18e and everybody has free bar inside. Its actually entrance to 2 clubs, one of them is the 2nd biggest in mallorca. So i paid the free alcohol bar just to drink a water and orange juice.
First thing getting into the club put the same earplugs as the previous experience (flat frequencies 15-20db), order for a water and take 300mg of Trobalt, for the next 40minuts, stayed away from the dance floor and speakers, after that time i started to feel high, and all girls become attractive. From that time i moved to the dance floor, where music is high and i can feel even the beats in my chest, so i can imagine the sound level was near 100-110db.
Of course im not crazy or suicidal, i was monitoring my T from time to T, going away from the dancefloor: nothing, no T, as i felt no T at all, i came back to the dance floor
After 2 hours I eent to the street, even with the earplugs i didn't hear my T, amazing, i found the most useful use of Trobalt, preventing T on high loud exposure. I moved to the other club, wich is bigger and similar loudness, i was there for like another 2 hours, after that, in the street with earplugs i could hear a minimal T (little higher than 2h before) , without earplugs not even so.
Went home and to sleep, next day i have the same T as always, as if i didn't go party. That was amazing, i could party to a disco as i didn't do from 1.5 years. Only bad thing, not able to drink a drop of alcohol, but well, who needs that if you get high with trobalt??
one friend with T told me that when he goes to a disco, the next 3-4 weeks will have higher T for sure
Well this is my experience, nothing more. Is not an advice. Everyone take theis own risks about drugs and loud sounds exposure.
Now i feel safer about nightlife and i will take trobalt again 300mg if happens to go out again
Im glad to share this experience to you and hope its useful for the fight against T, It seems Trobalt is super powerfull, more in "preventing" than "curing"
Note: I also taken 500mg of Keppra before driving to the disco (Mallorca - riu palace and paradies if anyone asks)

Other Medications/Supplements:

 

[Roger Larsson]

Progress Report

Progress Report Date:
Aug 22, 2015

Current Retigabine Dosage:
300*3

Current Side Effects:
-Problems focusing

Current Tinnitus Severity:
6 out of 10

Changes in Tinnitus:
None

Other Medications/Supplements:
None

 

[papu]

Progress Report

Progress Report Date:
Aug 22, 2015

Current Retigabine Dosage:
200-300-300

Current Side Effects:
none

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
very soft most of the days sometimes it goes a little bit up but no more than a 4.

Other Medications/Supplements:
none

 

[linearb]

New User Information

Gender:
Male

Age:
34

How Long Have You Suffered From Tinnitus? (Date of Onset):
Sep 1, 1999

How Did You Get Tinnitus?:
Acoustic Trauma

Explain How You Got Tinnitus:
Unknown initial onset; worsening from acoustic trauma in 2010

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:
14 khz blips, constant lower-frequency ringing in right ear.

The Severity of Your Tinnitus Before Starting Retigabine?:
6 out of 10

 

[papu]

Progress Report

Progress Report Date:
Aug 25, 2015

Current Retigabine Dosage:
200-300-300

Current Side Effects:
none

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
started trial on aug 9 and up to yesterday was a total success with tinnitus level off at 2 with sometimes for long periods being at 0 or 1. Yesterday it started to raise and the effect last less than before. It went up at night yesterday all the way to 6 (base level) . Have no idea why after working so well for that period of time (aug 9 to aug 24), will raise dose to 300 300 300 to see if it has something to do with resistance to the drug building up.

Other Medications/Supplements:
none