Retigabine (Trobalt, Potiga) — User Experiences

Progress Report

Progress Report Date:
Oct 16, 2014

Current Retigabine Dosage:
50mg tapering down

Current Side Effects:
No side effects

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
At first it seemed to have some positive effect. After using the drug for some days, Tinnitus has returned to previous levels. Therefore, the initial positive effect must have been placebo.

Other Medications/Supplements:
Magnesium 600mg once daily, Lexotanil 3-4.5mg when needed, melatonin 3mg before sleep

 

Progress Report

Progress Report Date:
Oct 21, 2014

Current Retigabine Dosage:
Zero...Last dose of taper down was a week ago today.

Current Side Effects:
None.
The increased hyperacusis that occurred for me as increased Trobalt dose during my trial has completely dissipated. It took about four days off Trobalt to feel like it was nearly back to pre-trial baseline. The "volume DVD movie test" and talking on speaker-phone for a long time without "ear bruising" now confirms no H residual.

Current Tinnitus Severity:
9 out of 10

Changes in Tinnitus:
None.
I think I can now say with assurance, that for me, there are no lasting side effects from my 84 pills of Retigabine. I had some doubts before the trial, but not any more.
Some slight 'depressed mood' since coming off the Trobalt is I feel more to do with "disappointment" than anything to do with the drug itself.

Other Medications/Supplements:
0.3 mg Clonazepam before bed...Continuing taper off this now that this Trobalt trial completed.

 

Progress Report

Progress Report Date:
Oct 29, 2014

Current Retigabine Dosage:
300*3

Current Side Effects:
amnesia, dizziness, but less side effects than before

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
It is becoming stronger and stronger, becoming hard to fall a sleep, and in the middle of night waking up and it is so strong takes me time to fall back to sleep, changes to this started 5 days ago, but t is constantly getting worse

Other Medications/Supplements:
5mg sleeping pill if t is bad, 4mg diazepam

 

Progress Report

Progress Report Date:
Nov 4, 2014

Current Retigabine Dosage:
100mg 3 times a day

Current Side Effects:
Just re-started, targeting 300mg x 3 per day

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
n/a

Other Medications/Supplements:
melatonin 3mg, xanax 0.5 before sleep

 

New User Information

Gender:
Male

Age:
36

How Long Have You Suffered From Tinnitus? (Date of Onset):
Feb 1, 2014

How Did You Get Tinnitus?:
Acoustic Trauma

Explain How You Got Tinnitus:


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

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

Describe Your Tinnitus:
fluctuates between good and bad days, mostly good days.

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

 

Progress Report

Progress Report Date:
Nov 4, 2014

Current Retigabine Dosage:
150mg x 3

Current Side Effects:
none

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
none

Other Medications/Supplements:
none.

 

New User Information

Gender:
Male

Age:
23

How Long Have You Suffered From Tinnitus? (Date of Onset):
Jul 30, 2014

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

Explain How You Got Tinnitus:
Ear infection.

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

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

Describe Your Tinnitus:
Sounds like a CRT TV with ringing.

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

 

Progress Report

Progress Report Date:
Nov 6, 2014

Current Retigabine Dosage:
100mg 3x daily

Current Side Effects:
mild urinary retention

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
I was around one week without Trobalt, until i find good source of it. And I have interesting experience - without Trobalt slightly increased volume of T - tonal. But... it increased at state before experiment, this means, that trobalt very slightly decreased my tonal T too, but it was very slow process and i did nt notice it. Central T did not return.

I am now only second day back on 3x100 mg, with patience wait for another report

Other Medications/Supplements:
NAC 600mg 3x daily, Magnesium 250mg 3x daily, Vit A 6000iu, Vit E 400iu, Vit C 1000mg, Zinc 25 mg, Lutein 10mg, Melatonine 2,5mg before sleeping

 

Progress Report

Progress Report Date:
Nov 8, 2014

Current Retigabine Dosage:
250+200+250

Current Side Effects:
Dizziness, orange urine, strong amnesia, blurry vision, concentration problem, irritability, hand tremors, muscle weakness, shortness of breath, bit of depression, after taking meds 40 min joy, strange happiness, need to spend a lot of money online, love to all people, being "high"... all that transfers so dumbness for next 4h

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
sometimes is stronger (higher), but is dosage dependable, as long as time goes , pill is taken every 8h, so at 8h if you wait 2 more, you brain and sight comes back, and sharpness, and t also Aldo not dramatically... also if it is too high after dosage i can take 50 mg additional and kill him /tinnitus)

Other Medications/Supplements:
50 trazadone, 5mg zolpiderm if needed, 3mg diazepam that i am slowing to 0, liquid minerals and vitamins, omega 3, ginko biloba, daktacort cream, magnesium and zink, paracetamon, Black Cumin oil, blessed olive oil from Greek monastery, ketokonazol shampoo, Shark liver oil, Mometasonfuroat creme, 1/4 dosage of gaba for gym, 1/3 of normal dosage tyrosine before gym, some amino acids. I hope YOU are now satisfied with answer.

 

New User Information

Gender:
Male

Age:
35

How Long Have You Suffered From Tinnitus? (Date of Onset):
Nov 11, 1998

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?:
Hissing, Dial Tones

Describe Your Tinnitus:
Left ear: hissing 11kHz
Right ear: hissing 11kHz + low pulsatile 2,8kHz

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

 

Progress Report

Progress Report Date:
Nov 12, 2014

Current Retigabine Dosage:
300mg three times daily

Current Side Effects:
Mild amnesia, slurred speech, grogginess, weird feelings

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
It works. It reduces tinnitus. I believe that if someone can do the 300mg for a proper amount of time (like 45 days), we may be looking at a cure. Yes, I am serious.

Other Medications/Supplements:
None. You don't need anything when your tinnitus is masked by event the faintest environmental noise.

 

Progress Report

Progress Report Date:
Nov 13, 2014

Current Retigabine Dosage:
900mg/day

Current Side Effects:
brain zaps when i sleep, i eventually fall asleep though, even faster than i normally do. (with vivid dreams)

Current Tinnitus Severity:
1 out of 10

Changes in Tinnitus:
super quiet, feels like the burning embers of the fire that is T

Other Medications/Supplements:
none.

 

Progress Report

Progress Report Date:
Nov 14, 2014

Current Retigabine Dosage:
50+50+50

Current Side Effects:


Current Tinnitus Severity:
9 out of 10

Changes in Tinnitus:
After few days at 150mg per day:
Today, the hearing activity appears slowed. Sensation of tinnitus less present but also a sensation of lower sensitivity to sound.

Other Medications/Supplements:
Per day: Vit E: 30mg, Vit C 180mg, Zinc 15mg, Lutéine 10mg, Zéaxanthine 2mg

 

New User Information

Gender:
Male

Age:
36

How Long Have You Suffered From Tinnitus? (Date of Onset):
May 5, 2014

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

Explain How You Got Tinnitus:
Noise induced hearing loss i guess

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

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

Describe Your Tinnitus:
Varying in loundness and frequency (so from good days to bad days, but most of the time good days), sometimes moving from multilateral to unilateral left ear or to right hear, sometimes more central.

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

 

New User Information

Gender:
Male

Age:
33

How Long Have You Suffered From Tinnitus? (Date of Onset):
Feb 1, 2014

How Did You Get Tinnitus?:
Unknown

Explain How You Got Tinnitus:
Im not sure about its cause, started slowly in feb/2014, cant attach to a specific day, so im almost discarting accoustic trauma, but I also went to some discos (2 days) over that time. Pretty sure the high stress I had on that time is partial cause of my T. Also worth to mention that a month before I had my first and big back contraction when I was doing a big effort in the gym, wich could cause some irrigation problems in the neck, and made me take Ibuprofeno 2 or 3 days only

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

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

Describe Your Tinnitus:
It sounds sometimes like an Sparkling pill and sometimes more like hissing at 4000Hz, but most of the time is a mix of them. Tiring and stressfull days make it louder. Normally I dont hear it in my noisy office, but always in a silent room. Is not reactive, but I have some hyperacusis wich can annoy me some times only because of myself talking

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

 

Progress Report

Progress Report Date:
Nov 18, 2014

Current Retigabine Dosage:
200mg + 200mg + 150mg evening before sleep

Current Side Effects:
very mild urinary retention, light sleepiness

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
Hissing is on very low level... sometimes i have to search it to hear it. Central T absolutely disappeared. (In my opinion, my central T was induced by Xanax, because it appears 2 months after i began to take it ( 8 months after acoustic trauma). Now Im 5th month Xanax-free, but central T was cured by Trobalt, not with Xanax using interruption.) Tonal T is reduced very very slightly. 3x150mg daily is not very effective against it. We will see, how effective will be 3x200mg dosage. Wait with patience for next report

Other Medications/Supplements:
NAC 600mg 3x daily, Magnesium 250mg 3x daily, Vit A 6000iu, Vit E 400iu, Vit C 1000mg, Zinc 25 mg, Lutein 10mg, Melatonine 2,5mg before sleeping

 

Progress Report

Progress Report Date:
Nov 18, 2014

Current Retigabine Dosage:
300mg three times daily

Current Side Effects:
Orange urine, very mild dizziness, difficulty concentrating, mild sedation. These side effects start about 30 minutes after taking the pill. They wear off gradually during the next 30 minutes.

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
The 300mg pill quietens my tinnitus for 3-4 hours. Then it slowly comes back. The morning and night dosages seem to have the better effect. I'd say that the afternoon dosage seems to be less effective. Right now, 3 hours after my afternoon dosage, my T is a bit louder than usual.

Other Medications/Supplements:
None.

 

Progress Report

Progress Report Date:
Nov 18, 2014

Current Retigabine Dosage:
100mg x3 a day

Current Side Effects:
Blurred vision

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
Much quieter and can live with it at this volume.

Other Medications/Supplements:

 

New User Information

Gender:
Male

Age:
43

How Long Have You Suffered From Tinnitus? (Date of Onset):
May 10, 2014

How Did You Get Tinnitus?:
Ototoxic Drugs

Explain How You Got Tinnitus:


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

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

Describe Your Tinnitus:


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

 

Progress Report

Progress Report Date:
Nov 20, 2014

Current Retigabine Dosage:
100+100+50=250mg. I weight 81kg (everyone should inform this)

Current Side Effects:
None

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
on the day i can't say because its masked, at night when i go to sleep is the same than before, mornings seems to be really lower, but before i also had some good mornings, but not every morning like now.
Mi dosage: 100 at 20h and 4am, 50 at 12am

Other Medications/Supplements:
Multi-vitamin and minerals. Not taking NAC anymore.
Glutamine 1.5 or 2gr after gym

 

Progress Report

Progress Report Date:
Nov 23, 2014

Current Retigabine Dosage:
100+100+100

Current Side Effects:
Slight dizziness since I was in total 300mg per day
Headaches for several days, but now I have none.
Very good apetite.
I sleep well and I have some difficulty getting out of bed in the morning. I go back to sleep in the morning after being woken up (this was impossible before due to the aggressiveness of my tinnitus).
I feel better concentration.

Current Tinnitus Severity:
8 out of 10

Changes in Tinnitus:
I feel better.
Since I'm at 300mg a day, I had ups and downs with my T but since these last days my T are slightly lower and stable (hissing T and tonal T).
I think the Trobalt produces a real effect on my T. To be continued ...
My T are weaker and less aggressive. I feel that my hyperacusis is slightly reduced. It happened to me in recent days to drive my car without my noise canceling headphones without significantly increasing my tinnitus.

Other Medications/Supplements:
Per day: Vit E: 30mg, Vit C 180mg, Zinc 15mg, Luteine 10mg, Zeaxanthine 2mg
I had a sore throat early in the week (not related to Trobalt) that I cared for with essential oils and honey.

 

Progress Report

Progress Report Date:
Nov 23, 2014

Current Retigabine Dosage:
900mg per day

Current Side Effects:
cognitive impairment, feel like i am stoned most of the day. my morning dose hits hard in the first 30min to hour, then the next 2-3 hours it is hard to do much, but i get better through out the day. i no longer have brain zaps. i have very vivid dreams.

Current Tinnitus Severity:
1 out of 10

Changes in Tinnitus:
t is presenting at a profoundly lower volume. when i do hear it, it is as though the tone(s) have purified, hard to describe, as if the edge tones have been cleaned up. i feel like there is a progressive improvement while on this drug, but it is early so i am cautiously optimistic.

Other Medications/Supplements:
none.

 

Progress Report

Progress Report Date:
Nov 24, 2014

Current Retigabine Dosage:
100mg x 3

Current Side Effects:
Blurred vision

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
Tinnitus has become even quieter and far easier to mask+hyperacusis has become less severe. Really is life changing! Life has become 100% better! Suicidal thoughts are no more and sleep pattens are back to normal! This truly has saved my life!

Other Medications/Supplements:

 

Progress Report

Progress Report Date:
Nov 24, 2014

Current Retigabine Dosage:
150x150x100 (150x3 on weekend)

Current Side Effects:
mild urinary retention.
Other maybe subjetive: more apetite, more relaxed, a 'good feeling' wich i cant describe, specially if i take a pill with empty stomach.
After pill, less "reaction time" like if i druank a little (like 1 beer)

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
its hard to say as it a slow process. But yesterday i realized it really works because it was on baseline on 8th after last pill, I took 150mg and 30 min later it was reduced like a 60%.
I think it had same effect that locoyeti described: more pure tone, it have been cleaned over the edges, so cleaning first the hissing component.
Sometimes I feel like my left ear is totally in silence

Other Medications/Supplements:
Multivitamin and minerals 1/day

 

Progress Report

Progress Report Date:
Nov 24, 2014

Current Retigabine Dosage:
300 mg TID

Current Side Effects:
a bit of higness/grogginess 30/40 minutes after taking 300mg, that last for one hour max (now on my third day on 300mg TID, it last for less than 30 minutes), during this hour, cognitive skills a bit slower, but not qualitatively different i would say. while i was at 200mg TID, a bit of exictation and more energy. no other side effects

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
loudness a bit lower on average. Some specific sounds/frequencies seems to have disappeared, such that my T is now more stable in this aspect (before being on trobalt it was a kind of several patchwork of sounds, with unpredictable pattern of association), but not in loudness : had some spikes 2 days ago, but i also experienced several period of near silence for some hours, especially after taking it on empty stomach. Today has been a good day so far (max loudness = 1/1.5 but it seems to increase a bit with night coming), the first since a long time i've been able to concentrate on work without the use of white noise.
Anyway, i was expecting effects to be faster, maybe i'm not sensitive enough to the drug (see side effects above), maybe because of my weight (90kgs/198lbs) or a 'good' renal function that eliminates/metabolize the drug too fast (just wondering)

Other Medications/Supplements:
none

 

Progress Report

Progress Report Date:
Nov 26, 2014

Current Retigabine Dosage:
300x300x200 mg

Current Side Effects:
mild urinary retention (but very very mild... it is better than before those dosage) strong sleepiness after 30 minutes from taking a pill, after another 30 min it is ok.

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
Week on 200x200x150 mg dosage, trobalt wasnt very effective against tonal T. But, my mild hyperacusis disappeared, hissing stays on low level and Transient spontaneous T atacks disappeared too. My goal is massive reduction or anihilation of tonal T (1180Hz) - wich is in left ear very stable. Ok... from yesterday Im on 300x300x200mg dosage. Maybe I will lift it up at 3x300. Will see, what it does after several weeks. Sometimes i have feeling, that my tonal T is quieter. But it may be only placebo effect.

Other Medications/Supplements:
NAC 600mg 3x daily, Magnesium 250mg 3x daily, Vit A 6000iu, Vit E 400iu, Vit C 1000mg, Zinc 25 mg, Lutein 10mg, Melatonine 2,5mg before sleeping

 

New User Information

Gender:
Male

Age:
42

How Long Have You Suffered From Tinnitus? (Date of Onset):
Apr 11, 2012

How Did You Get Tinnitus?:
Ototoxic Drugs

Explain How You Got Tinnitus:
Ototoxic/Acoustic Trauma

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

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

Describe Your Tinnitus:
Very high freq 16 -17 khz.

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

 

New User Information

Gender:
Male

Age:
30

How Long Have You Suffered From Tinnitus? (Date of Onset):
Oct 11, 2014

How Did You Get Tinnitus?:
Acoustic Trauma

Explain How You Got Tinnitus:
4-5 hours of loud carnival drumming at a club.

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

What Kind of Tinnitus Do You Experience?:
Ringing

Describe Your Tinnitus:
Very high pitched constant tone.

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

 

Progress Report

Progress Report Date:
Nov 29, 2014

Current Retigabine Dosage:
600mg single dose

Current Side Effects:
Slight difficultly with focussing on the screen. 'Awareness' of my stomach. Slowed thinking.

Current Tinnitus Severity:
6 out of 10

Changes in Tinnitus:
Powder form taken with fatty food (cheesecake, milk). After about 3 hours the volume has reduced slightly.

Other Medications/Supplements:
n-acetyl cysteine 600mg x4, n-acetyl-l-carnitine 400mg+alpha lipoic acid 200mg x8, vitamin C 1000mg x2, pycnogenol 3-g x6, vit D3 1000IU x22, taurine 500mg x6, very high RDA vitamin B complex once every few days.

 

Progress Report

Progress Report Date:
Nov 29, 2014

Current Retigabine Dosage:
300 mg TID

Current Side Effects:
same as my last report : still this slight highness/grogginess (that doesn’t last more than 30 minutes), like if i had smoke a small joint, not such a big deal for me, i can even handle that while being at work. No other side effects

Current Tinnitus Severity:
1 out of 10

Changes in Tinnitus:
Since my last update on Monday, things have improved. Except a minispike for some hours on Wedenesday (loudness= 1.5/2 but with one of the most bothersome kind of T sound I have sometimes), other weekday were near silence (around 0.5), I surprised myself enjoying near silence in my office (I have a new job – a part-time job – and a new office, and 10 days ago i was hugely desperate that it was so silent, the most silent office i ever had i think, but now i’m enjoying it). Today T loudness is around 1 (but i had a nap, and nap has never been good for my T), so not as good as my best week days, but still ok for me.

Other Medications/Supplements:
none