Retigabine (Trobalt, Potiga) — User Experiences

Progress Report

Progress Report Date:
Aug 25, 2015

Current Retigabine Dosage:
as of now -> 0

Current Side Effects:
Sorry guys experiment is over. Raised dosage to 300 mg per take and in the pm dosage had what i will call an "event". All neurons started firing synchronous to my heart beat (pupils dilated and contracted at the rhythm of my heart. Movements were erratic and lost all perception of time. Situation got a little bit scary for me, wife was absolutely terrified, so experiment is over for her (can put it to another one of this). Conclusion trobalt has something that definitely works and that has given me hope that autifony and sf00034 and on the right track so i will just wait for them. As of now after my experience i can only recommend trobalt if you are definitely in the edge.

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
started at 6/7 will continue to post to see if it goes back to previous level, stays lower or gets worst after a few days without trobal.

Other Medications/Supplements:
none

 

Progress Report

Progress Report Date:
Aug 26, 2015

Current Retigabine Dosage:
100mg 3 times a day, tapering down

Current Side Effects:
none

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
Well this is my final progress form.
I have been using RTG on and off since September 2014 so its time to call it quits.
Most of the time I used it as an aspirin, only when needed.

For the last couple of months I did it properly.
Tapering up:
5 days at 100mg, 5 days at 150mg, 5 days at 200mg, 5 days at 300mg then about a month at 400mg 3 times a day.
Now finishing tapering down: 2 days at 300mg, 2 days at 200mg, 2 days at 100mg.

My thoughts, most apply to myself only:
1) RTG reduces tinnitus temporarily when taking a pill > 200mg. The effect lasts for about an hour.
2) I suspect that GSK has done a poor job at quality controlling the amount of RTG inside each pill. I believe that a random 400mg pill might actually contain less than 400mg, another one might contain the correct amount - I am writing this because there is an inconsistency on the effects of any given pill. And I am taking the empty stomach factor into account here.
3) The effect is stronger on an empty stomach. However it lasts longer if I had a good meal before eating the pill. RTG works great with benzos, for recreational purposes. I don't know if it fries your brain in the process.
I've tried taking keppra with RTG, seemed quite useless.
4) I believe that RTG has given me a very (very) slight but permanent reduction. Now I don't know what a 9/10 tinnitus is, maybe my 9 is another person's 2 and vice versa, however I do believe that I got some lasting effect from Trobalt.
5) The drugged effect is great. I remember my first time on 400mg fondly. I will miss it.
6) RTG does not beat benzos for T relief. If tinnitus is ever beaten, its gonna take a cocktail of drugs that target a shitload of brain receptors, not just potassium channels.
7) Side effects for me: orange pee, becoming 20% more stupid at doses > 300mg, better sleep, reduced reflexes, forgetting where I put my glasses all the time, generally less coordinated behavior. Nothing earth shattering though. You get used to it.

I'm sure I'm forgetting various bits and pieces of information, if I remember anything noteworthy I'll post in the other thread.

Other Medications/Supplements:
5HTP, thyroid med

 

Progress Report

Progress Report Date:
Aug 28, 2015

Current Retigabine Dosage:
0

Current Side Effects:
none

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
Three days post trobalt, expected the ringing to go up again, is has not so far, it stayed at at 3 (started at 6). Also i am sleeping better (10 pm to 6 am) and taking naps during the day (something that was impossible since my onset almost 6 months ago). So far happy with results of the three week experiment. Will probably do another run on trobalt in a few months after my wife's fear subsides (and never more than 600 mm a day or 200 per take, 300 mg got me into weird land).

Other Medications/Supplements:

 

Progress Report

Progress Report Date:
Aug 31, 2015

Current Retigabine Dosage:
100 mg in the morning, 100 mg in at night (shhhhh wife does not know)

Current Side Effects:
a little bit of sleepy feeling (more from the stugeron).

Current Tinnitus Severity:
1 out of 10

Changes in Tinnitus:
i was off retigabine i think the 25, tinnitus when up for a little bit and the stay around a 3 to 4. Started taking stugeron since yesterday 75 mg twice a day and retigabine 100 bid. today woke up to a 2 right know 30 min after pill a 1. will keep this dosage and combination to see results for at least a week.

Other Medications/Supplements:
Stugeron forte 75 mg twice a day

 

New User Information

Gender:
Male

Age:
30

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

How Did You Get Tinnitus?:
Acoustic Trauma

Explain How You Got Tinnitus:
A night in a loud bar for too long. (Yeah, go ahead and pick a bench under the speakers, brilliant call, *self highfive*)

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

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

Describe Your Tinnitus:
High freq pulsating hissing/ringing/static head T (14600Hz), right ear 10500Hz dial tone with a minor pulsating effect, left ear 9300Hz dial tone (sometimes dissapears), and left ear general "broad T feeling" which is hard to describe as a sound, it's more like a pain.

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

 

Progress Report

Progress Report Date:
Sep 5, 2015

Current Retigabine Dosage:
100 mg three times a day

Current Side Effects:
none

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
I will describe it as a pleasant 2 sometimes a three for most of the day (90% of awake time) sometimes it creeps up a little bit to maybe a 4 around the time for the next pill. (base before trobalt experiment one month ago 6/7). PS don't need masking anymore

Other Medications/Supplements:
none, suspended stugeron early on

 

Progress Report

Progress Report Date:
9 September 2015

Current Retigabine Dosage:
500mg

Current Side Effects:
Currently nothing.

I had some minor urinary retention and feeling of weakness once when increasing dosage last week. Maybe some cognitive problems as well last week (writing a complicated document seemed a bit hard).

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
Not much but T seems to be a bit softer. I've had couple of really quiet morning but I've had them in past aswell. I still rank my T to be a bit lower than my base T (5). I don't expect apparent results before my dosage is 600mg

Other Medications/Supplements:
Multivitamin, E-EPA/DHA, magnesium, NAC

 

New User Information

Gender:
Male

Age:
32

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

How Did You Get Tinnitus?:
Acoustic Trauma

Explain How You Got Tinnitus:
Probably fireworks. I was standing in the hallway when a big firecracker went off in front of it. The hallway amplified the sound. A week later my ears started to hurt and a tone in my right ear appeared. From there on my tinnitus has progressed and become more prominent.

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

What Kind of Tinnitus Do You Experience?:
Ringing

Describe Your Tinnitus:
In left ear solid 14+ kHz tone. Sometimes a TV tube like noise in the head. Sometimes other frequencies apear random and shortly. Also sometimes a faint 400 Hz tone in my left ear.

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

 

Progress Report

Progress Report Date:
Sep 15, 2015

Current Retigabine Dosage:
150mg per day

Current Side Effects:
none

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
I'm starting today with my Trobalt trial. I've measured my T levels two weeks before I started multiple times a day and will continue measuring during my trial and after I stopped.
I'm starting off with a 150mg dose a day and raise it with 150mg a day each week until I reach 750mg a day. I’m planning on staying on the 750mg dose for a month but it depends on the side effects.
I have some really good T days where I only hear it in a silent room but also huge spikes were the T is ringing/hissing in my head the entire day above all other sound. I hope to crush that kind of days with Trobalt.

Other Medications/Supplements:
none

 

New User Information

Gender:
Male

Age:
39

How Long Have You Suffered From Tinnitus? (Date of Onset):
Jun 6, 2014

How Did You Get Tinnitus?:
Acoustic Trauma

Explain How You Got Tinnitus:


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

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

Describe Your Tinnitus:
A very high pitched tone with an underlying hiss, I rate it as an 4-5 on good days and have kind of habituated to it, but I get random and frequent spikes where it is a 6 or 7, especially when I wake up it can be quite loud, I hope with this trial to take the sharp edges off the spikes. Talked about it with GP and he agrees that it is worth the try.

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

 

Progress Report

Progress Report Date:
16 September 2015

Current Retigabine Dosage:
700mg

Current Side Effects:
Little tiredness couple of times after taking Trobalt. Some difficulties with spelling (I have to pay more attention when typing emails etc.)

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
Since last report, not really much (base T was 5). T is still a bit softer which has allowed me to take a little leap in habituation. I have had couple of nights that I could fall asleep without masking. There was couple if nights when I woke up at the middle of the night and my T was almost gone but I've woken up with low T before (although no this low) aswell since my T is at the lowest in the mornings.

Additionally I'd say that my right ears 10500Hz dial tone shows up rarely now. Before Trobalt it was there 70% of the time.

Other Medications/Supplements:
Multivitamin, E-EPA/DHA, Magnesium, NAC

 

Progress Report

Progress Report Date:
Sep 21, 2015

Current Retigabine Dosage:
300mg (3x 100 each day)

Current Side Effects:
Sometimes a little bit tired and light headaches but I also got a cold last week so maybe the symptoms were from te cold.
No real side effects yesterday when I upped my dose.

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
Last week I was on a 150mg dose. The first day I had some really quit moments. Later the week I had some huge spikes.
Yesterday I upped to dose to 300mg a day. Again I had a really quit moment in the evening and also this morning when waking up.
The hissing is very low at those moments and if I plug a finger in my ear I hear a solid high pitched tone. Normally that tone isn't hearable I think because it's covered up by the hissing.

So far not sure if it's the trobalt, placebo effect or my normal T.

Other Medications/Supplements:

 

Progress Report

Progress Report Date:
Sep 21, 2015

Current Retigabine Dosage:
200 mg three times a day

Current Side Effects:
none

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
no real changes i still get about 1 to 2 hours of almost complete silence and then starts to creep up maybe to a 3 or a 4 (base level 6 to 7). When i am outside it barely bothers me (maybe a 2), inside it does seem louder (up to a 4) understandably more noticiable because of the silence. I do not need to mask anymore to watch tv or sleep. Still not even close to cured but i think is a question of time and raising the dosage. I manage to get 100 more pills from spain (200 mg) and then next month i will get 84 400 mg pills. I plan to go up to 300 or 400 (what my body permits) and then take it for two to three more months and stop taking them. Will see.

Other Medications/Supplements:
none

 

Progress Report

Progress Report Date:
Sep 24, 2015

Current Retigabine Dosage:
100mg three times a day

Current Side Effects:
None

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
Pros: Even on the low dose (take it every four hours) I had some moments of total silence, even when plugging my ears, otherwise the t is greatly reduced to the point where it becomes a non-issue and is very easily ignored, the sound seems to have changed from the dog-whistle to just the hissing.

Cons: The effects are temporary, but sometimes can take the whole day, the effects are variable.

I have been slowly raising the days as my GP advised, tomorrow I will start with 150mg.

Other Medications/Supplements:
Nothing

 

Progress Report

Progress Report Date:
24 September 2015

Current Retigabine Dosage:
1050mg (3x 350mg)

Current Side Effects:
Now at higher dosages everytime when I increase dosage I get that funny stoned feeling (and when that feeling goes away I'm really tired for 15mins or so), sometimes orange urine, some erectile dysfunction after dosage reached 900mg. I had some head aches for couple of days around the weekend but I don't have them anymore.

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
My base T was 5. Mornings are pretty quiet now (maybe quieter than they used to be). I'd rate them 1-2. During the afternoon my T goes back up to 3-4 but I've gotten some improvement. This is not placebo anymore and now when this T is a bit softer I've been able to fall asleep without masking. It has also helped me to habituate much more easier so I've gotten my joy of life partly back.

I have to mention that I think that my hyperacusis (which I kind of didn't know that it exists) has gone down. Which isn't necessary a good thing because now I may stay in the crowded somewhat noisy room without noticing the loudness and the result is that my T reacts on it and ramps up to 5 for couple of hours :/

I'll be going up to 1200mg per day within the next 7 days so let's see does it make a difference. I somehow felt that 800mg per day was better than the current dosage (1050mg/day) so I may not get improvement at 1200mg/day.

Other Medications/Supplements:
Multivitamin, NAC, magnesium, EPA/DHA

 

Progress Report

Progress Report Date:
Sep 28, 2015

Current Retigabine Dosage:
3x 150mg a day

Current Side Effects:
none

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
Last week I was on a 3x 100mg dose. Had some really silent days and silent moments but also some spikey moments. My H is less, I can throw forks and knives in de drawer again without the sound blasting in my ears and this weekend I went to a swimming pool and the sound didn't bother me.

Yesterday I upped my dose to 3 times 150mg a day. Huge spike at the moment. Not happy. However last time I upped the dose I also had some spikes the first day so let's wait wat happens.

I think I already can conclude that it really helps my H. Not sure for the T.

Other Medications/Supplements:
none

 

Progress Report

Progress Report Date:
Sep 30, 2015

Current Retigabine Dosage:
600 /200 TID

Current Side Effects:
slight drunkenness, slight jaw clenching, forgetfulness, happiness, talkative .. .a lot less side effects than the first round

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
again trobalt seems to alter my T from right to left ... at peak of Trobalt T goes down to a 3 ... rst of the day 4-5 and bad moments a 6 ... yesterday I was in the bathroom and noticed that my right ear was completely silent, my head T was low to faint and my left T which usually is over powered by my annoyance of right T was very very faint ... I very cautiously said to myself `I could almost live like this` ...

Other Medications/Supplements:
5-HTP

 

Progress Report

Progress Report Date:
1 October 2015

Current Retigabine Dosage:
3x400mg

Current Side Effects:
I have all the previous mentioned side effects but they are a lot of milder right now. (orange urine, drunk feeling, erectile dysfunction, tiredness after taking Trobalt)

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
I still have softer T but I haven't noticed any changes for last 4-5 days while I've been on 3x400mg dosage. I'll see if the next 1-2 weeks on max dosage changes things - if they don't I taper down to ~800mg/day dosage because I feel that it reduced my T the most. So I'll be eating Trobalt for next month.

I'm also interested on this "aspirin"-approach where you take Trobalt when the T is worse or before sleeping.

Other Medications/Supplements:
Multivitamin, magnesium, NAC, EPA/DHA

 

Progress Report

Progress Report Date:
Oct 5, 2015

Current Retigabine Dosage:
3x 200mg a day

Current Side Effects:
Last weekend I upped my dose from 3x 150mg to 3x200mg. This morning I had some more serious side effects. I was at work and feeling stoned, speaking and typing slow. Really unpleasant when you have a meeting to attend.
Also had some eye floaters and flashes.

Current Tinnitus Severity:
3 out of 10

Changes in Tinnitus:
Still not sure if trobalt affects my tinnitus in a positive way. I think it has some effect on my T but I still have the same up and down days, some moments are really silent but I also still have spikes which last all day.
However on the best moments my T is silent, alomost impossible to hear when plugging fingers in my ears, but those moments are short (as in minutes).

AlsoI still have the feeling my H is getting better. Also some up and down days but overall I can tolerate more sounds and also being outside sounds more normal again.

So at the moment, for me trobalt works for my H, still not sure if there is big improvement in my T.

Other Medications/Supplements:
none

 

Progress Report

Progress Report Date:
9 October 2015

Current Retigabine Dosage:
3x400Mg

Current Side Effects:
I have all the previous mentioned side effects but they are a lot of milder right now. (orange urine, drunk feeling, erectile dysfunction, tiredness after taking Trobalt)

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
Tinnitus hasn't changed a lot and it has annoyed me a bit more. I haven't gotten "silent night wake ups" like anymore like I did when I was tapering up. I'm splitting single 400Mg dose into 2x200Mg with a hour between to suppress the drunk effect if I need to do something important/delicate( like do a challenging change to production or hold a presentation etc.)

I'll be taking Trobalt another 2-3 weeks to see if T goes down but I'm not expecting anymore results. I guess I waited too long... So you who are considering taking Trobalt. Do it before 1,5 year mark - preferably at 6 months mark.

Additionally I'd like to mention that I've never experienced that my T goes done shortly after taking the pill and it is unable to suppress my temporary after-gym T increase.

Other Medications/Supplements:
Multivitamin, magnesium, NAC, EPA/DHA

 

New User Information

Gender:
Female

Age:
52

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

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

Explain How You Got Tinnitus:
Depression, anxiety, medications

Is Your Tinnitus in Which of the Following?:
Head

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

Describe Your Tinnitus:
Persistent central Hissing/buzzing alternating with tones. Variable - differs day to day. Intermittent and infrequent ringing in ears.

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

 

Progress Report

Progress Report Date:
Oct 12, 2015

Current Retigabine Dosage:
raised to 3x 250 mg a day last weekend

Current Side Effects:
After taking a dose the effects last for 6 hours, same for the side effects. Severe side effects with these doses. Problems with speaking and typing, spelling. (at the moment) Colorful flashy vision. Light headache.
Eye floaters again today. Thinking about stopping or lowering the dose.

Current Tinnitus Severity:
2 out of 10

Changes in Tinnitus:
One hour after taking a dose the T is more quit and sometimes even nonexistent. With 3 times 200 mg a day I was convinced this drug really works. Now with a 250mg dose i'm even surer.
I had a spike 2 ours ago. Now after taking a dose my T is silence. You can feel the pills kick in and silence the T.
However, I experience severe side effects so I think about stopping or lowering the dose. (Maybe to 4 times 100 mg a day?)

I have a telephone appointment with my ENT tomorrow so I will discuss with him. I you have any ideas how to better spread the doses please contact me in private.

Other Medications/Supplements:
none

 

Progress Report

Progress Report Date:
Oct 13, 2015

Current Retigabine Dosage:
100 mg TID

Current Side Effects:
Mild headache, bloating in PM and mild constipation

Current Tinnitus Severity:
8 out of 10

Changes in Tinnitus:


Other Medications/Supplements:
Biotin, 10,000 mcg. Discontinued all else during this trial

 

Progress Report

Progress Report Date:
16 October 2015

Current Retigabine Dosage:
3x300mg

Current Side Effects:
I have all the previous mentioned side effects but they are mild. (orange urine, drunk feeling, erectile dysfunction, tiredness after taking Trobalt).

As new side effects I have some flickering/strobe effect in my peripheral vision but this may be due to eye strain (long days staring at computer screen). Flickering presents itself especially if I close my eyes and open them. It lasts usually only couple of seconds after opening eyes. I have experienced this before in my life but not this much. It is at strongest at evening before going to bed. At morning it has pretty much reset.

There was 2 nights during last week when I "saw" a light in my right eyes right side peripheral vision even though the room was dark and my eyes closed.

I still rate my T as 4 even though my T may already be back to 5 in terms of volume but when T softened during taper up, it gave me a chance to habituate better which I did I think. I can still fall asleep with out masking etc even though I hear my T loudly. Day time there is easily 2-3 hours between me noticing my T.

I'll take a week at a time and see how long Ill be eating Trobalt and transitioning to "aspirin" type of use. I guess I have developed stronger tolerance to Trobalt.

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
I've lowered my dosage to 3x300mg (from 3x400mg) for the last week

Other Medications/Supplements:
Multivitamin, magnesium, NAC, EPA/DHA

 

Progress Report

Progress Report Date:
Oct 18, 2015

Current Retigabine Dosage:
0

Current Side Effects:
None.

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
It's sadly came back...

Other Medications/Supplements:
Loads lol

 

New User Information

Gender:
Male

Age:
46

How Long Have You Suffered From Tinnitus? (Date of Onset):
May 1, 2015

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

Explain How You Got Tinnitus:
maybe from getting cold maybe from loud sounds

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

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

Describe Your Tinnitus:


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

 

Progress Report

Progress Report Date:
Oct 19, 2015

Current Retigabine Dosage:
300mg per day

Current Side Effects:
vision a bit blurred with one eye. but maybe it is not from trobalt

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
began using trobalt on 2015-09-30 on dose50mgx2 per day. effect was immediatle : even with 50mg before sleep was much better sleep and less noise at night. later it faded. then slowly tapered up. now at day 100 mg reducing T and H. it is first time when something working on my T. and it seems working as Aspirine (Citramon) approach

Other Medications/Supplements:
1mg melatonin before sleep

 

Progress Report

Progress Report Date:
Oct 19, 2015

Current Retigabine Dosage:
150 mg TID

Current Side Effects:
Very mild transient sedation after the afternoon dose. GI signs have resolved.

Current Tinnitus Severity:
8 out of 10

Changes in Tinnitus:
None thus far. I continue to have bad days where the hissing/buzzing is in my head and is so loud nothing can mask (10/10)

Other Medications/Supplements:
Trazadone 50mg as needed for sleep

 

Progress Report

Progress Report Date:
Oct 21, 2015

Current Retigabine Dosage:
150mg 3 times day

Current Side Effects:
My planning was on taking 3x 250mg a day for a month.
Last week I was supposed to be on that dosage but the side effects were too severe for me.
What bothered and scared me to most was the flashy vision. I’m afraid after damaging my ears to also damage my eyes so I decided to stop with Trobalt and slowely lower the dose to zero.

I was on 250mg for two days. After that on 3x 200mg and since last Saterday on 3x 150mg.

3x 150mg doesn’t give me severe side effects. Only some flashes in my vision but not as severe as on 200 or 250mg.

Current Tinnitus Severity:
4 out of 10

Changes in Tinnitus:
No permanent changes. After lowering the dose the T went up again. 150mg does not do very much for my T.

Had a T spike the last two days. This afternoon I took 200mg Trobalt again and T is now much lower.
Such a shame it has some many side effects. This pill without the side effects would be magic for me.
To bad I have to stop.

Other Medications/Supplements:

 

New User Information

Gender:
Male

Age:
30

How Long Have You Suffered From Tinnitus? (Date of Onset):
Oct 21, 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, Hissing, Whooshing, Buzzing

Describe Your Tinnitus:


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