Retigabine (Trobalt, Potiga) — General Discussion

Just wanted to share.

My T today is extremely loud and unbearable. As a result, high anxiety.
So I decided to take another 200 mg Trobalt (I take currently only on occasion).
My volume does not go down much, maybe from a 10/10 to a 8/10.

But it definitely has an anxiolytic effect and calms the brain down.
It makes me dizzy and I am fine with the world. Anxiety goes down massively to the point I feel normal again.

Honestly, for me it feels like a benzo with also decreasing T volume 3-4 levels.
I can understand that for example kevinhogan (only mentioning him since I went through this FAQs again some days ago) recommends Xanax and/or an anxiolytic AD.
If you do not care about anything, why should you care about T?

I took a small daily dose of Xanax a few years ago after reading Kevin Hogan's book. My anxiety levels reduced dramatically and so did the tinnitus, to the point it never bothered me. I felt normal again for about a month until the Xanax effect wore off and it would have meant taking ever increasing amounts.

The t reductions I experienced with Retigabine were usually associated with an anxiolytic effect as well, but were quite short-lived.
 
The t reductions I experienced with Retigabine were usually associated with an anxiolytic effect as well, but were quite short-lived.
So just to be completely clear -- you did not see any long-term, lasting benefit to your RTG usage? The only thing that interested me about RTG were the sporadic reports of long-term changes following discontinuation. If I just wanted to suppress my immediate perception of T with dangerous drugs, I'd stick to benzos since I find them a lot less worrying than RTG.
 
So just to be completely clear -- you did not see any long-term, lasting benefit to your RTG usage? The only thing that interested me about RTG were the sporadic reports of long-term changes following discontinuation. If I just wanted to suppress my immediate perception of T with dangerous drugs, I'd stick to benzos since I find them a lot less worrying than RTG
took retiggabine for 4 months up to 1100 mg. Tinnitus reduced from a very bothersome 7 to maybe a 2 to a 3 (very managable). Had to stop on dedcember 17 because of visual side effects *flashes and freaky images form when i closed my eye lids*
Stop cold turkey after the second episode. Check my retina and visual accuity and they as before trobalt . No detachment or color spots.

Up to now january 3 tinnitus stay lowed at 3 to 2. so i am very happy with my trial. I started taking another cocktail of drugs since the 4th of january and now my tinnitus is up to 1 and sometimes 0 for hours (0 for me is not hearing it with ears unplugged). Am i cured?, no but i am very happy with my results. Would had i been at this level now without taking trobalt, who knows i can not be 100 % sure since i had only one acoustic trauma on march and never been one to expose my ears before or after that traume to high sound. I have heard here that up to 80% of people with just one trauma get a lot better. In my opinion the only thing i can tell everybody is that before trobalt life was looking pretty sad. After one week of trobalt i regained my life again, so the change was quite radical. About the cocktail of three drugs i am taking right now i will give it one more week to see if it stays as of now in a 1 sometimes a 0. I dont want to give anyone false hopes and i dont want anyone running to get the drugs. if i stay like this for a week i will gladly publish so that anyone with acoustic trauma can try it. Hope it helps.
 
@papu what dosage were you on when you felt such a difference in a week ?
I am still on very low dosage , trying to decide whether to go all in .
i went up from 100 mg three times a day to 600 mg *200 mg each take *in the first week and from there slowly through out the four months that i took it up to 1100 mg per day
 
So just to be completely clear -- you did not see any long-term, lasting benefit to your RTG usage? The only thing that interested me about RTG were the sporadic reports of long-term changes following discontinuation. If I just wanted to suppress my immediate perception of T with dangerous drugs, I'd stick to benzos since I find them a lot less worrying than RTG.

I do not experience any lowering of tinnitus after discontinuation. During the time I took the drug there were episodes of quiet, but these were unpredictable and increasing the dose for a short time towards the end did not result in any increased period of quiet.

Mark only took retagabine for 27 days, most people with positve results went longer than that.

This is true. My supply of the drug would only enable me to take it for this time. I disliked the side effects and felt the positive effects were so variable and becoming less apparent towards the end of the near 4 weeks.

It's anybody's guess what the results would be after a longer time.

If the trialees of AUT00063 were experiencing the same "hit and miss" positive effects as I did with Trobalt, I can understand why the trial was ended early.
 
Hi I am now in my 4th month,built up gradually to 1200mg/day,held this dose for 6 weeks,the effect on the tinnitus was a reduction from 6-8,out of 10,to a 2-3 out of 10.Now on a maintenance dose of 800 mg/day.like all drugs you do build up a tolerance,so the side effects reduce over time.Also the effectiveness of the drug is diminished over time.My maintenance dose is holding the levels to a 4-5 /10,at present.Someone on here suggested taking them as you would aspirin for a headache,this I feel would work for when it gets too bad .I also am taking 15mg x1,with 3mg x1 melatonin,half an hour before bed time,coupled with the last RTG,about 3 hrs before bedtime.This combined effect has given me the best sleep for years ,the tinnitus just fades,and 8-9 hrs later i feel refreshed .Prior to this for me was the problem of sleeping with background noise,.
 
Hi I am now in my 4th month,built up gradually to 1200mg/day,held this dose for 6 weeks,the effect on the tinnitus was a reduction from 6-8,out of 10,to a 2-3 out of 10.Now on a maintenance dose of 800 mg/day.like all drugs you do build up a tolerance,so the side effects reduce over time.Also the effectiveness of the drug is diminished over time.My maintenance dose is holding the levels to a 4-5 /10,at present.Someone on here suggested taking them as you would aspirin for a headache,this I feel would work for when it gets too bad .I also am taking 15mg x1,with 3mg x1 melatonin,half an hour before bed time,coupled with the last RTG,about 3 hrs before bedtime.This combined effect has given me the best sleep for years ,the tinnitus just fades,and 8-9 hrs later i feel refreshed .Prior to this for me was the problem of sleeping with background noise,.

So it wasn't until 6 weeks in on 1200 that you started to see an improvement in t?
 
@Tony Joy
I wish i had your tolerance to the drug, those eye flashes that i got at higher dosages really got me scare. I quit on december 17 (becuause my tinnitus was low if it were like the beginning of trial at 7 i would have risk anything but not now at a 2) and they are gone now, no lasting damage. If not i would have continue for three more months.
 
@papu
If I take 200 mg, I am dizzy for at least two hours. Could not drive, work or concentrate.
So how would that be with 1200 mg? I would be like a zombie I guess.
How was that for you?
 
Good job @papu, so now you didn't feel any spikes from your T, is it stabilized at 2 ? Did you have H and others symptoms like headache before RTG ?
its stabilized at 2 to 3 i would say. I do get some random spikes but they tend to be only anxiety or stress related. No H only had it at the beginning of the acoustic trauma and went out by itself about a month later.
 
@papu You got T from acoustic trauma, do you have hearing loss? What was the acoustic trauma ?
Do you feel that maybe Trobalt had a relaxing effect and therefore eased the T or simply it acted on the T itself?
Did you try other drugs like benzos before this with any result ?
Sry for all the questions :)

Also , I sometimes feel that my vision gets a bit ,,,blurry or something , might be imagining it , need glasses actually.
I took 200 mg last night , had a great evening ...back to horrible morning T and a headache.
 
Hi Valeri,No I held that dose for 6 weeks,the reduction came in the first week.The relief at not having the previous level of Tinnitus encouraged me to maintain the 12oomg dose ,which I split into 3 x 400 mg /day.At the start of the 6 week period the hit lasted about 4 hours then started to fade towards the next dose.I should add that after the second week i could then function normally,apart from driving .The one aspect that made me reduce was I was getting used to the dose,and wanted to see if a lower dose would then work,this was down to availability,I get my RTG,from Spain,not just down the road.Also cost,and I needed to drive my car again,which I wouldn`t do on 1200 mg/day,on 800mg/day ,split into 4 x 200mg doses awarness isn`t an issue and I`m able to drive.On this dose I still have the odd couple of days where the Tinnitus spikes,I think this is down to diet.Finally I would like to say that in my opinion this isn`t a long term cure,but a short term relief
 
@Tony Joy
I wish i had your tolerance to the drug, those eye flashes that i got at higher dosages really got me scare. I quit on december 17 (becuause my tinnitus was low if it were like the beginning of trial at 7 i would have risk anything but not now at a 2) and they are gone now, no lasting damage. If not i would have continue for three more months.
The only effects I have/had are like I have just drunk five or six double spirits ,near enough,ability to remember things was my worst problem,which I got round by writing things to do down on a list.I forgot the number of times I mislaid my glasses!Yes in a minor way my vision was a bit fuzzy,as I wear glasses I was used to this problem,what we need it a similar drug without the side effects that you can take long term
 
@Tony Joy
I wish i had your tolerance to the drug, those eye flashes that i got at higher dosages really got me scare. I quit on december 17 (becuause my tinnitus was low if it were like the beginning of trial at 7 i would have risk anything but not now at a 2) and they are gone now, no lasting damage. If not i would have continue for three more months.

I had the same things going on when I closed my eyes. Mirror images that were animating.
 
Hi Valeri,No I held that dose for 6 weeks,the reduction came in the first week.The relief at not having the previous level of Tinnitus encouraged me to maintain the 12oomg dose ,which I split into 3 x 400 mg /day.At the start of the 6 week period the hit lasted about 4 hours then started to fade towards the next dose.I should add that after the second week i could then function normally,apart from driving .The one aspect that made me reduce was I was getting used to the dose,and wanted to see if a lower dose would then work,this was down to availability,I get my RTG,from Spain,not just down the road.Also cost,and I needed to drive my car again,which I wouldn`t do on 1200 mg/day,on 800mg/day ,split into 4 x 200mg doses awarness isn`t an issue and I`m able to drive.On this dose I still have the odd couple of days where the Tinnitus spikes,I think this is down to diet.Finally I would like to say that in my opinion this isn`t a long term cure,but a short term relief

I have no side effects on 1200mg but also not much improvement in tinnitus:(
Maybe this thing works better for tonal than low frequency (drone) tones.
I'm lowering to 900 and will stop, it's not working. Over two weeks in should give some results one would assume.
What to do after this doesn't look promising at all :(:(:(
 
You got T from acoustic trauma, do you have hearing loss? What was the acoustic trauma ?
Do you feel that maybe Trobalt had a relaxing effect and therefore eased the T or simply it acted on the T itself?
Did you try other drugs like benzos before this with any result ?
Sry for all the questions :)

No relaxing effect just plain zero tinnitus when it hit me( I could actually hear it coming down slowly). I did take clonazepam at the beginning and did not have the same effect tinnitus did not lower I was just able to sleep with it (heard tinnitus all the way until falling asleep that was benzo effect on my tinnitus).

Got my trauma from sitting down in a open restaurant bar (no ceiling) for three hours near a speaker for three hours. I went to measure the loudness later after trauma and it was about 85 to87 db. Yes had moderate hearing loss in left ear and mild in the right (had perfect hearing before incident). Recover some of it after 6 months
 
Got my trauma from sitting down in a open restaurant bar (no ceiling) for three hours near a speaker for three hours. I went to measure the loudness later after trauma and it was about 85 to87 db.

dominique-goven-lezing-andere-geluiden-7-728.jpg
 
Got my trauma from sitting down in a open restaurant bar (no ceiling) for three hours near a speaker for three hours. I went to measure the loudness later after trauma and it was about 85 to87 db. Yes had moderate hearing loss in left ear and mild in the right (had perfect hearing before incident). Recover some of it after 6 months

And they say 85 db for 8 hours and you'll be fine.
 
And they say 85 db for 8 hours and you'll be fine.

Yes but he measured it to 85-87. The chances are it could have been somewhere in the low 90's for longer periods of time. You would have to use laboratory grade equipment to make precise measurements to the decibel.

The decibel scale is logarithmic which means that every increase by 3 is a doubling in intensity.
The scale goes:

85 db for 8 hours
88 db for 4 hours
91 db for 2 hours
94 db for 1 hour
...

So the difference between 85 and 87 is actually almost twice as loud sound intensity!

And you must also remember that this is a total amount of sound a person normally should tolerate for an entire day! So if you've been at work and work with heavy machinery where you've exposed your self to sounds of, let's say 85 db for a number of hours and then go out to dinner at nigh in a restaurant where you expose your self to an additional 88 db for 2-3 hours, you can have damage!
There is a cumulative effect.

Also one may have been out clubbing some 15-20 years ago, which may have caused some damage that comes back and bites you in your 40's.
 

Log in or register to get the full forum benefits!

Register

Register on Tinnitus Talk for free!

Register Now