Retigabine (Trobalt, Potiga) — User Experiences

[Tinnitus Talk]

Retigabine can be very dangerous. Do not take it unless prescribed by a physician.

This is not a trial; it is a way for members to share their experiences which can get lost within the long conversations in the main thread. It is in no way an endorsement for Retigabine, which is an unproven treatment for tinnitus at this time and has potentially serious side effects.

General Retigabine Discussion & Comments on the Experiences:
Retigabine (Trobalt, Potiga) — General Discussion

 

[Johno]

New User Information

Gender:
Male

Age:
35

How Long Have You Suffered From Tinnitus? (Date of Onset):
07 June 2012

How Did You Get Tinnitus?:
Acoustic Trauma

Explain How You Got Tinnitus:
In concrete garage, my former friend starts his superloud motorcycle without mufflers ( i didnt know that he has not mufflers in exhausts). Concrete walls amplifies noise and my ears starts ringing.

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

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

Describe Your Tinnitus:
Multitonal (like sirens) with main pure tone 1180Hz in left ear. White noise type hissing in both ears (more in right). Central head T 1400Hz pure tone, sometimes 3200Hz.

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

 

[Johno]

Progress Report

Progress Report Date:
1 September 2014

Current Retigabine Dosage:
50 mg

Current Side Effects:
Mild pressure in the bladder, but it slowly disappears.

Current Tinnitus Severity:
6 out of 10

Changes in Tinnitus:
White noise type hissing is little bit softer and less intrusive. Tonal T - no changes

Transient spontaneous T spikes - nearly disappeared and those who remained are weaker and shorter, without temporary hearing loss.

With 50mg dosage my central head T is quieter too.

Other Medications/Supplements:
NAC 600mg - 3x daily, Magnesium 250mg 3x daily, Vit C 1000mg, Vit A 6000ui, Vit E 400ui, Zinc 25mg, Lutein 20mg, Melatonin 5mg before sleep

Betahistine24 - 2x daily

- all of those supplements i start to take a lot of months before retigabine experiment.

 

[SoulStation]

New User Information

Gender:
Male

Age:
31

How Long Have You Suffered From Tinnitus? (Date of Onset):
01 February 2012

How Did You Get Tinnitus?:
Other

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

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

Describe Your Tinnitus:
I have multiple tones in each ear. But the MAIN Tone which is 85-90% prevalent is around 3.9 Khz which appears on multiple levels. It appears as a constant tone that I hear mainly when I plug my ears and also appears as a reactive tone where it almost feels like a MONO, centralized tone that levitates above my head. It reacts the most to the sound of my car some fans. It also appears to go up after running or working out. I find the reactive high tone the most frustrating. *The other tones are very low but I can hear them. I have also noticed a VERY VERY VERY faint pulsing in my right ear only, but this is only audible if all the blood rushes to my head.

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

 

[SoulStation]

Progress Report

Progress Report Date:
2 September 2014

Current Retigabine Dosage:
50 mg 3 times a day (lowered from 100 3x/day)

Current Side Effects:
Minor urinary hesitation.

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
I would really rate this a 3.5 out of 10.
Definite slight lowering in central head tinnitus and reactivity of T. Hissing is also softer.

Other Medications/Supplements:
Lexapro 20 mg, lorazapam 1.25 mg, adderall short acting 20 mg-30 mg
NAC, 1800 mg a day
ALA, 1200 mg a day
Vit C, E, A (as Beta-Carotene)
Magnesium citrate 1000 mg a day
Fish Oil
B vitamin complex

 

[Viking]

Progress Report

Progress Report Date:
3 September 2014

Current Retigabine Dosage:
100mg x 2 morning and evening

Current Side Effects:
little bit of nausea. Dry mouth. fatigue. insecurity. Slow driving of motorcycles

Current Tinnitus Severity:
7 out of 10

Changes in Tinnitus:
Right ear much quiet. Left ear marked more bearable. There aren't centralization. If I go in loud places tinnitus does not increase. The ears are exchanging tone. it's all very strange, but surely different.

Other Medications/Supplements:
Cutted Clonazepam from 2mg to 1,5mg at night, Melatonin 3mg at night, Valerian Disper 2 pills 90mg day and night

 

[Viking]

New User Information

Gender:
Male

Age:
34

How Long Have You Suffered From Tinnitus? (Date of Onset):
03 January 2006

How Did You Get Tinnitus?:
Unknown

Explain How You Got Tinnitus:
High-frequency sensorineural hearing loss since birth. Tinnitus appeared during a train journey to the end of 2005 left ear and then centrally. Both ears. Worsened by 300% after the use of hearing aids in June 2013 at the currently manageable only with retigabine and Rivotril.

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

What Kind of Tinnitus Do You Experience?:
Ringing, Hissing, Static, Sirens, Roaring, Pulsing, Buzzing

Describe Your Tinnitus:
Extremely unstable. Generally more marked on the left (pure tone 6000hz), can explode to the right (7500hz) during the day and in the last year more between the hours of 3 or 4 pm After terrible days (I speak only of the last year) can suddenly disappear in both ears for a few hours to wake up. This happens after a long series of bad days of tinnitus (120/140 db) I had suicidal thoughts

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

 

[Christian78]

Progress Report

Progress Report Date:
3 September 2014

Current Retigabine Dosage:
200 mg

Current Side Effects:
dizzies, blurry vision, speech problems, amnesia, mosly only after medicine onset

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
lower spikes, lower tinnitus, better sleep

Other Medications/Supplements:
Trazadone 50 mg, paracetamol, valium 6mg, slepping pill 5mg

 

[Johno]

Progress Report

Progress Report Date:
3 September 2014

Current Retigabine Dosage:
100mg 3x daily

Current Side Effects:
Mild pressure in bladder, but after week it improves very good. No other side effects.

Current Tinnitus Severity:
6 out of 10

Changes in Tinnitus:
Hissing little bit softer. Today I take 100mg first day, it is too soon to write results with this dosage.

7 days on 3x50mg retigabine results: hissing little bit softer, central T quieter 30%-50%. T in both ears without effect. Entry level 50mg dosage is not very effective in T improving (for me). Will see soon, how about higher dosages.

Other Medications/Supplements:
Betahistine24 2x daily, NAC 600mg 3x daily, Magnesium 250mg 3x daily, Vit A 6000iu, Vit E 400iu, Vit C 1000mg, Zinc 25 mg, Lutein 20mg

Melatonine 5mg before sleeping

 

[Bogdan]

Progress Report

Progress Report Date:
4 September 2014

Current Retigabine Dosage:
200 mg

Current Side Effects:
Mild disartria

Current Tinnitus Severity:
2 out of 10

 

[Bogdan]

New User Information

Gender:
Male

Age:
35

How Long Have You Suffered From Tinnitus? (Date of Onset):
20 October 2011

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

Explain How You Got Tinnitus:
Cervical spondylosis

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

What Kind of Tinnitus Do You Experience?:
Hissing

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

 

[Johno]

Progress Report

Progress Report Date:
8 September 2014

Current Retigabine Dosage:
200mg 3x daily

Current Side Effects:
No side effects, bladder is now ok.

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
From today i start 200mg dosage.
100mg 3x daily is same effective asi 50mg. Tonal T unchanged, hissing softer and little bit quieter. Central T quieter 30%-50%. Lets see, what happens on 200mg dosage. Lot less transient spontaneous T spikes and more weak.

Other Medications/Supplements:
betahistine24 2x daily, NAC 600mg 3x daily, Magnesium 250mg 3x daily, Vit A 6000iu, Vit E 400iu, Vit C 1000mg, Zinc 25 mg, Lutein 20mg

Melatonine 5mg before sleeping

 

[Hengist]

New User Information

Gender:
Male

Age:
24

How Long Have You Suffered From Tinnitus? (Date of Onset):
08 July 2014

How Did You Get Tinnitus?:
Acoustic Trauma

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

What Kind of Tinnitus Do You Experience?:
Hissing

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

 

[Mpt]

New User Information

Gender:
Male

Age:
36

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

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

Explain How You Got Tinnitus:
ear syringing

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

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

Describe Your Tinnitus:
ringing/airplane

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

 

[Mpt]

Progress Report

Progress Report Date:
Sep 11, 2014

Current Retigabine Dosage:
800mg a day

Current Side Effects:
tiredness

Current Tinnitus Severity:
1 out of 10

Changes in Tinnitus:
My tinnitus basically doesn't exist. I still considered myself as having tinnitus after 1 month on the drug. After two months in though, I can't hear my tinnitus even when looking for it.

Other Medications/Supplements:
nasonex nasal spray

 

[SoulStation]

Progress Report

Progress Report Date:
Sep 11, 2014

Current Retigabine Dosage:
100 mg 3x Day

Current Side Effects:
Slight Urinary hesitation (Less than last report) Slight Fatigue, Mild Amnesia

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
Realistically it is so hard to gauge other then there are less spikes. But I don't feel like it's doing to much for my main tone (3.9k). The hissing is definitely down from where it's been. I hope to talk to my doctor about possibly upping the dosage after I have been on it for a month at 300 mg a day. It is making me be hyper-vigilant again with my T which is bad.

Other Medications/Supplements:
Lexapro 18 mg, lorazapam 1.25 mg, adderall short acting 20 mg-30 mg
NAC, 1800 mg a day
ALA, 1200 mg a day
Vit C, E, A (as Beta-Carotene)
Magnesium citrate 1000 mg a day
Fish Oil
B vitamin complex
Luiten

 

[Johno]

Progress Report

Progress Report Date:
Sep 14, 2014

Current Retigabine Dosage:
back to 100mg 3x daily

Current Side Effects:
no side effects

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
From monday 8sept to friday 12sept i was on 200mg 3x daily. After those 4 days I had to reduce the dose, because the doctor is still on vacation and can not prescribe me another box now. Anyway...

After increasing dose at 200, nothing major happened. Central T disappear, but hissing was the same, and in 3 day of 3x200 hissing spikes to pre-retigabine state (strange condition). Ear tonal T was slightly better. On friday evening I reduce dosage to 100mg and I will increase it back, if I have new box of Trobalt in hands.

I can say, I was on 3x200mg dosage too short to report any results.

After reducing dosage back to 100mg 3x daily, central T appears (but its quiet), hissing is lower, Ear tonal T is slightly louder - condition returns to 100mg dosage times.

Other Medications/Supplements:
Betahistine24 2x daily, NAC 600mg 3x daily, Magnesium 250mg 3x daily, Vit A 6000iu, Vit E 400iu, Vit C 1000mg, Zinc 25 mg, Lutein 20mg, Melatonine 5mg before sleeping

 

[Zimichael]

New User Information

Gender:
Male

Age:
64

How Long Have You Suffered From Tinnitus? (Date of Onset):
Nov 5, 1956

How Did You Get Tinnitus?:
Acoustic Trauma

Explain How You Got Tinnitus:
See my Zimichael "Profile Page/Information" for details...1956 = acoustic trauma; 1980 = acoustic trauma; 2006 = ototoxic drugs; 2012 'time exposure' at moderate volume (meeting) in a small room with 'hard' acoustics.

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

What Kind of Tinnitus Do You Experience?:
Ringing

Describe Your Tinnitus:
High pitched "E flat" around 6,000 Hz. Extremely loud in left ear, and bloody loud in the right ear. With this much internal noise it sounds like it's in my 'whole head' too. Volume level is very constant except when new damage occurs ( = 3 successive increases in volume after original T. in 1957 ) or if I get "zapped" with a temporary spike c/o noise exposure I did not see coming and had no, or insufficient protection. ( I have three sets of plugs for different expected noise level situations ). Protection from noise exposure is not an option for me...or rather I should say, for my body. Compared to my 'previous life', this "stage four" reactive T/H. requires a high degree of isolation so that I can avoid earplugs use as much as possible and thus feel more 'normal' to myself. When I step out my door is when I suddenly realize how handicapped I have become. This infernal screaming Eeeeeee is my "silence"... I have no idea any more what that word truly means.
P.S.The "9" below reflects the severity it has on my life and actions, not necessarily how I "feel" about it all the time. There's a big difference.
Best to all... Michael

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

 

[Zimichael]

Progress Report

Progress Report Date:
Sep 21, 2014

Current Retigabine Dosage:
50 mg x 50 mg x 75 mg = 175 mg/day...Increasing to 200 mg total, tomorrow (Monday 22nd.)

Current Side Effects:
Slight abdominal pain (expected!) when bump up a dose. Slight spacey head in morning for a few hours only after higher dose jump. Initially longer sleep (like 7-8 hours...Killer!!!) but seems to be less so past few nights. No daytime fatigue at all...Will post more info in a discussion when have time soon.

Current Tinnitus Severity:
9 out of 10

Changes in Tinnitus:
No change yet, but.....I'll wait.

Other Medications/Supplements:
0.5 mg Clonazepam (Klonopin) at bedtime for sleep...(Ha, ha! Does bugger all really, but holding from taper at this dose). No other medications. No supplements or vitamins to speak of for some years. My gut does not like them! Just good food. And one glass of wine in evening - which have stopped since starting Potiga/Tobalt.

 

[Johno]

Progress Report

Progress Report Date:
Sep 22, 2014

Current Retigabine Dosage:
100mg 3x daily

Current Side Effects:
No side effects

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
It is almost month, Im taking retigabine. I can prove, that hissing is lower (30-50%) and it sound softer, central T almost disappear (but sometimes it appears - after stress or sport) . Tonal T in both ears loudnes is same like before retigabine experiment. But Im still on low 100mg dose 3x per day.

Other Medications/Supplements:
Betahistine24 2x daily, NAC 600mg 3x daily, Magnesium 250mg 3x daily, Vit A 6000iu, Vit E 400iu, Vit C 1000mg, Zinc 25 mg, Lutein 20mg, Melatonine 5mg before sleeping

 

[Christian78]

Progress Report

Progress Report Date:
Sep 23, 2014

Current Retigabine Dosage:
300mg*3

Current Side Effects:
amnesia, like being drunk

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
lower

Other Medications/Supplements:
sleeping pills

 

[SoulStation]

Progress Report

Progress Report Date:
Sep 24, 2014

Current Retigabine Dosage:
100 mg 3x/day

Current Side Effects:
Sluggishness, Slight amnesia, Lack of energy, fatigue, less money in my bank account.

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
First I want to say that my "3" rating of my T is for when this med is in my system.
Tinnitus is attenuated when the medicine is in my blood but wears off pretty quickly. I'd say it's about on par with the 30-50% reduction. Mainly it has gotten rid of the central t most of the time, lowers my tonal t/hissing and makes it softer. I can deal with the Shhhhh sound, it's the tones that drive me mad. I am also an interesting case because I play in a wedding band (for the time being) and have had some weekly exposure louder sounds (I wear custom molded ER-25 musicians plugs during all musical activities). I have had some really good relief with this drug but it also makes it hard when it's out of your system and and it goes back up a little bit. I also fear about long term usage because it's only been around a short time and is banned in some countries.

Other Medications/Supplements:
Lexapro 16 mg, lorazapam 1.25 mg, adderall short acting 20 mg-30 mg
NAC, 1800 mg a day
ALA, 1200 mg a day
Melatonin 6 mg at night
Vit C, E, A (as Beta-Carotene)
Magnesium citrate 1000 mg a day
Fish Oil
B vitamin complex

 

[Zimichael]

Progress Report

Progress Report Date:
Sep 27, 2014

Current Retigabine Dosage:
150 mg TID (3 x per day) = Total dose of 450 mg/day

Current Side Effects:
- Most prominent is increased sensitivity to sound volume and duration of such. I already have hyperacusis/reactive tinnitus, but this has increased 'sensitivity' by about 25% or perhaps even 50%. Hard to tell as am vigorously protecting myself from noise exposure. *[More add more detail in post tomorrow].
- Tinnitus volume seems to be about the same as prior-to-trail baseline, though in reality is probably about 10% higher due to hyperacusis reactivity carry-over. (So about "9.1" on scale).
- Transitory fatigue. Not consistent.
- Tendency to forget things, like taking Trobalt dose on time (so use an alarm clock!). I am not usually forgetful at all in this way. Tendency to make more mistakes typing.
- Fluctuating sense of being more emotionally fragile. Sometimes a feeling of 'spiritual exhaustion' – for want of a better term! I think if I had any decrease in T and H would not be an issue. This is a tiring procedure to keep on going with the added hyperacusis, etc.
- BP (Blood Pressure) seems to be consistently about 20 points higher on the systolic. Average before trial was 115/75…current average about 135/80.

Current Tinnitus Severity:
9 out of 10

Changes in Tinnitus:
None. One day increase by about 15% of current level last Monday (9/22/2014), then back to baseline volume. Perhaps a little louder, but see above. No change in tone. *[Will add more detail in post tomorrow].

Other Medications/Supplements:
0.5 mg per night of Cloanzepam. No alcohol. Nothing else.

 

[Freddie]

New User Information

Gender:
Male

Age:
56

How Long Have You Suffered From Tinnitus? (Date of Onset):
Nov 27, 2013

How Did You Get Tinnitus?:
Unknown

Explain How You Got Tinnitus:
Unknown to me I had a slight hearing loss in my right ear that was discovered when I had my first hearing test, I may have had this for years, I went through a stressful period towards the end of last summer that might have been the tipping point as my tinnitus then came out of the blue.

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

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

Describe Your Tinnitus:


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

 

[Christian78]

Progress Report

Progress Report Date:
Oct 7, 2014

Current Retigabine Dosage:
300+300+250

Current Side Effects:
amnesia (previous lvl 8, now level 5,5),
urine retatnion lvl 2,
side effect after taking medicine that appear in 30 min strength> (from prev lvl 7 now lvl 3),
blurry eyes (before 5-6, now 3)
depression (can be caused) (before lvl 5 now lvl 2)
typing problems (before lvl 7, now lvl 3)

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
Milder as it was just that sometimes medicine makes me dull and i don't notice even if t gets stronger.

Other Medications/Supplements:
4,5 mg diazepam, sleeping pill that i forget to take

 

[Zimichael]

Progress Report

Progress Report Date:
Oct 7, 2014

Current Retigabine Dosage:
Was 200 mg TID (3 x per day) = Total dose of 600 mg/day.....Starting taper down and then off drug as of now.

Current Side Effects:
- Most prominent is increased sensitivity to sound volume and duration of such. I already have hyperacusis/reactive tinnitus, but this has increased 'sensitivity' by about 25% or perhaps even 50%. Hard to tell as am vigorously protecting myself from noise exposure above around 65 dB. Hopefully will return to baseline off drug.
- Forgetfulness seems to have decreased over time, and 'typos', even as increased doses.
- Transitory fatigue also decreased over time, but returned somewhat at 600 mg/day total.
- "Head fog" that started on day 16 (temporary drop back down to 100 mg 3 x per day) dissipated after taking micro-dose of sub-lingual Folate at meals *[Just one of the rec. aids ref. Methylation Protocol c/o Yasko].
- The mild "emotional fragility" decreased after second week.
- BP (blood pressure) has dropped back after initial increase, to an average of 125/75, just slightly higher on the systolic still. Not really 'significant'.
- No other side effects of note except temporary headache of a few hours after shifting up to 200 mg/dose. Did not repeat, so again, not really 'significant'.

Current Tinnitus Severity:
9 out of 10

Changes in Tinnitus:
- Changes in tinnitus = None.
- Changes in hyperacusis = increase of 25% to 50% but subject to review as need "sound exposure" to tell current level v. before started. Will slowly increase such exposure once tapered off the drug, and report in due course.

Other Medications/Supplements:
0.5 mg per night of Cloanzepam. No alcohol. Nothing else, except micro-dose of approx 1/8th of one sublingual Folate pill at meals.

 

[undecided]

New User Information

Gender:
Male

Age:
37

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

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

Explain How You Got Tinnitus:
Don't really know. Probably due to stress.

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

What Kind of Tinnitus Do You Experience?:
Hissing

Describe Your Tinnitus:
High frequency hissing noise, mostly in the right ear. Not extremely loud but quite annoying. Starts low in the morning, gets worse as the day goes by. Has some pulsating component as well, creeps in during the afternoon hours, sometimes. Have low days and annoying days.

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

 

[undecided]

Progress Report

Progress Report Date:
Oct 12, 2014

Current Retigabine Dosage:
100mg 3 times a day

Current Side Effects:
No noticeable side effects

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
Seems to be most effective 30 minutes to 2 hours after taking the pill. It is having a positive effect on my tinnitus but I believe the dosage is too low. Have ordered 300mg pills to see if they really make a difference.

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

 

[Johno]

Progress Report

Progress Report Date:
Oct 14, 2014

Current Retigabine Dosage:
100mg 3x daily

Current Side Effects:
No side effects

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
Due to problems with trobalt source i was unable to lift dosage to 3x200mg etc... My body has used to those 3x100mg dosage and hissing is nearly same like before trobalt experiment begins. But central T has not returned and TST spikes are disabled too. On tonal T on both sides, this dosage has no effect (sometimes it was quieter, even a lot of quieter, but only for short time (1-2 hours))

For better results i have to lift dosage to 3x200 or more. I am searching new trobalt source now.

Other Medications/Supplements:
Betahistine24 2x daily, NAC 600mg 3x daily, Magnesium 250mg 3x daily, Vit A 6000iu, Vit E 400iu, Vit C 1000mg, Zinc 25 mg, Lutein 20mg, Melatonine 5mg before sleeping

 

[Zimichael]

Progress Report

Progress Report Date:
Oct 15, 2014

Current Retigabine Dosage:
Zero...Finished fast taper off yesterday. ***[Attached complete dosage schedule in Excel format]

Current Side Effects:
- The increased hyperacusis decreased as dose went down. I expect a "normalizing" back to pre-Trobalt baseline in a short period of time.
- No other side effect residuals.

Current Tinnitus Severity:
9 out of 10

Changes in Tinnitus:
No change in Tinnitus.
Hyperacusis went up about 50% from prior baseline at peak dose of 600 mg/day total. Resolving upon cessation.

Other Medications/Supplements:
0.5 mg/day Clonazepam before bed. That's all, nothing else. No supplements. No other meds.