Retigabine (Trobalt, Potiga) — General Discussion

[Danny Boy]

Well, in fairness, it's really not just about one man vs. another, is it? Both have teams of people working with them (although Large's resume/capabilities are quite substantial). To my mind, it's good to have various teams working simultaneously, even if the lead on Team USA is younger and less lettered. Sounds like Autifony is the way to go at this point, and frankly, don't much care who wins, as long as the treatment becomes available and is accessible to the widest possible audience. The question then, is, what are the best "personal protocols," in the interim, yes?

I've compiled a list of people who work at Autifony/investors

https://www.tinnitustalk.com/threads/team-autifony.10714/#post-131843

 

[Greg Moreau]

Thanks, DB.

 

[Danny Boy]

Thanks, DB.

No problem. I'm always here to help a fellow sufferer.

 

[NGC891]

Hello,
I do not write much about the forum because of time. I am dad for 4 months and I rehabilitates a ruined house ...
I read a lot of comments lately and wanted to give my views on the use of Trobalt.I have tinnitus about 9/10 almost unbearable and reagents tinnitus after several acoustic trauma.

I tried at year-end 2014, Trobalt with unsatisfactory results (250mg, 3 times a day). I sometimes found a dimininution randomly.After trying Keppra (2500mg daily for four months), I decided to stop Keppra as I did not notice my tinnitus improvement except at the beginning of treatment (placebo effect?).
I experienced again the Trobalt recently before a dinner with friends at home.Here my return as casual user when I completely exhausted.Taking the Trobalt on an empty stomach provides much more effect than during meals or after meals.The 200mg taken do not bring me any effet.La taking 300 brings a slight improvement.Taking 400mg is one that has the most effect although the effect is not always the same.
Trobalt is a very powerful drug use with caution!
Last night, one hour after taking I had very significant effects. It started with a feeling of intoxication and dizziness after 20 minutes but without the fatigue benzodiazepine effect.
I felt my tinnitus reduction 9/10 to 5/10 about.However, I had major short-term memory problems.
When I responded to a question by responding over 20s, I was unable to remember the original question. However I remembered from the issues at the end of the evening. It's very surprising and unsettling. Could someone explain this phenomenon? I was sometimes unable to find in a discussion of some common objects words.I had some difficulties to move.My tinnitus seem maintained by a storage effect of my brain.Tonight, they returned sadly to 9/10 after being relatively bearable today and other side effects have dissipated.

I wanted to share my experience.

Good luck to all who might try Trobalt and thank you for returns of experiences shared by everyone.

 

[Street Spirit]

Interesting. I was on Klonopin for extreme anxiety (pretty much thought I was dying, but it was just somaticization disorder--something to this day no one has been able to say outright). I tapered myself off, without any issues, over a period of, well, a year, basically. Stopped fully two months ago. Now I'm back on it just to sleep--and stay asleep. The study about how it can reduce T seems "thin." I just posted a lengthy response on the anxiety/Tinnitus thread (https://www.tinnitustalk.com/threads/can-anxiety-cause-tinnitus.10651/#post-131800), including a possible connection w/ the auditory nerves and anxiety, and Dr. Bruce Hubbard's take on the subject.

If you don't mind me asking, what is your current "personal protocol" for dealing?

Cheers.

I now take kpin 2 years and on 2mg but currently 1.5mg faster taper anyways I have insomnia even before taper..this drug sucks and it seems like all the people that are bad, are on it!! ( my observation over 2 yrs)

 

[Greg Moreau]

It's the only thing that enables me to sleep at the moment; just a stabilizer. I will taper off as soon as I am able.

 

[Street Spirit]

It's the only thing that enables me to sleep at the moment; just a stabilizer. I will taper off as soon as I am able.

Good idea..long term is no good..pretty certain of this...but again. .just my own observation so take with grain of salt..I am just trying anything now to try and get a real stabilization happening..as opposed to a stable worsening

 

[Street Spirit]

* sorry to hijack this thread*

Back to Tro.

 

[Greg Moreau]

A cure is coming. They're getting close, having isolated the Potassium channels than govern this shite. Try mindfulness meditation--seriously. It helps people with chronic illness (ancientbrain.net or look up MBSR). These things will not cure anything, but they may change your relationship to it, emotionally...

 

[Robb09]

is Potiga(trobalt) legal in Canada? I hope AUT will work...

 

[Danny Boy]

is Potiga(trobalt) legal in Canada? I hope AUT will work...

https://www.canadadrugs.com/products/trobalt/400mg

$632.32 for a months worth!?!? It's only 158 pound in Spain for one month!?

632.32 US Dollar equals
404.17 British Pound

 

[just1morething]

Cheaper here:http://www.canadianpharmacyking.com/Drug/Potiga I get generic Protonix from them. They no longer accept credit cards, only ACH payments.

 

[linearb]

If you don't mind me asking, what is your current "personal protocol" for dealing?

Cheers.

Daily meditation, regular exercise, and a conscious and willful effort to be as compassionate as possible to myself and others. Meditation focused on metta is useful in all of these regards.

I take a microdose of cannabis right before sleep; I do think that this is somewhat helpful with intensity and spikes but overdoing it pushes things in the other direction.

 

[Christian78]

After one year on trobalt i am still alive

many up and down.

one is certain trobalt is good for habituation!

 

[papu]

Right now on trobalt 300 mg empty stomach 0 for 20 min, 1 hour later a good 1. But I am afraid that after my expensive stack ends I will go back up. Will have to plan a trip to spain soon too expensive in the us i am afraid to buy it from Canada after news program.

 

[linearb]

i am afraid to buy it from Canada after news program.

why? What was on the news program?

Travelling to Spain, buying it there, and then bringing it back into the US is definitely a pretty serious felony under Federal law. You may not be that likely to get caught, but if you do, it's a large hammer they can drop on you.

Also, isn't travelling to Spain a lot more expensive than just getting it in the US? It looks like this is going to cost me around $300 a month in the US; a trip to Spain is like $1500.

 

[papu]

Can someone tell me if they sell trobalt in india without doctor note and for how much they ask for the 84, 200 mg pill I look in Internet and did not find anything thanks (The original stuff not powder)

 

[papu]

I am from the us but reside in Costa Rica. I would go to spain and get at least 8 month worth. In the us it cost me $1399 for 130 200 mg pills and that was with a discount coupon from Internet plus the prescription was a one time favor done from my aunt doctor. About India I got a friend that goes back and forth from there so I would not have to spend the trip to spain.

 

[Christian78]

Right now on trobalt 300 mg empty stomach 0 for 20 min, 1 hour later a good 1. But I am afraid that after my expensive stack ends I will go back up. Will have to plan a trip to spain soon too expensive in the us i am afraid to buy it from Canada after news program.

well after you stop you will surely go back... trobalt was never meant to be cure, and autifony too, we will use it for rest of life, and hope in time comes something better and better

pitty u from USA dont agree on it i have prescription, you would have to buy me ticket and what medicine cost price in pharmacy and i can take over borther 3 months dosage of 3x400mg without problem

 

[papu]

program from nbc dateline they show multiple examples from people getting expire products and counterfeit medicine that did not had the same medicine.

 

[papu]

why? What was on the news program?

Sorry my friend my mistake i read again and carefully that article that was from abc not nbc and indeed i was wrong it was US citizens that open store fronts in the US saying that they were bringing the drugs from canada. Indeed the website at least from the one you said are legit and sell the real stuff. I guess they are taking the credit card payments away because they are pissing off some US pharmacy. Once again sorry my mistake.

 

[papu]

well after you stop you will surely go back... trobalt was never meant to be cure, and autifony too, we will use it for rest of life, and hope in time comes something better and better

I still hope that you might revert brain plasticity after some time specially if it has not been to long since it started. Its a question of dosage, how long you had it and time (the longer you had it the more you have to take and the higher the dose). With trobalt you can not simply raise the dosage or take it for to long *too much risk after 400 mg* even asystole (heart stop, dont worry they did not die and they got their money) in three guys after taking one dose of 900 mg in phase 1. I look at it as a bridge until autifony or sf0034 come out. Their is no question in my mind that they are in the right track, it will be a cure that will work fast and easy for recent tinnitus that will take longer depending on the years (and higher dosage). At the worst it will be a pill like the one i take for hipertension every day. I just hope that is not that expensive and that it wil be easy to aquire by everybody because this condition is indeed cruel.

 

[Greg Moreau]

Daily meditation, regular exercise, and a conscious and willful effort to be as compassionate as possible to myself and others. Meditation focused on metta is useful in all of these regards.

I take a microdose of cannabis right before sleep; I do think that this is somewhat helpful with intensity and spikes but overdoing it pushes things in the other direction.

Ahhh, nice. I was thinking of Metta mindfulness; that's been something I've been grooming for years now, and it seems especially important now. Any sort of masking/notched therapy??

 

[Greg Moreau]

After one year on trobalt i am still alive

many up and down.

one is certain trobalt is good for habituation!

Congrats! If I could:

What is your a) dose, b) change (10/10 to 2/10)? c) side effects?

 

[linearb]

Ahhh, nice. I was thinking of Metta mindfulness; that's been something I've been grooming for years now, and it seems especially important now. Any sort of masking/notched therapy??

When I'm especially bothered, I'll put on cricket noises, though what I really prefer is to simply sit outside and have actual natural soundscapes in the background.

I've been experimenting with the notched stuff a little bit lately, but I haven't been regular enough about it to have much of an opinion.

 

[Greg Moreau]

Interesting. Agreed that outside is very healing; at least, temporarily. Still trying to figure out why certain frequencies terminate T for up to 20 seconds at a time. So, http://www.audionotch.com/app/tune/ at 8234 Hz just seems to make my "high freq" T dissipate rapidly--but only for a short period. The co-founder explained it to me: http://www.audionotch.com/blog/tinnitus/residual-inhibition-for-tinnitus/ but my simple layperson's CPU doesn't get it...

[EDIT - AUDIONOTCH EXPLANATION]

Some of our users have noticed that listening to their tinnitus frequency using our tinnitus tuner, and then turning the computer generate sound off, can result in a temporary reduction in their tinnitus tone. This is a known phenomenon that has been studied and is known as residual inhibition. To read more about this phenomenon, click here to read a paper on the subject by Canadian researchers.

Interestingly, the mechanism of function of this procedure does not contradict the proposed mechanism of notched sound therapy. Notched sound therapy works by lateral inhibition in order to suppress the spontaneously firing tinnitus percept associated neurons. Residual inhibition works by increasing the auditory input at the exact frequency of the tinnitus frequency, thereby reducing the overall auditory system's need to "compensate" for the reduced input at the damaged hearing frequencies (it is this compensation process that inadvertently creates the tinnitus percept by increasing the overall auditory system's sensitivity level).

 

[Christian78]

I still hope that you might revert brain plasticity after some time specially if it has not been to long since it started. Its a question of dosage, how long you had it and time (the longer you had it the more you have to take and the higher the dose). With trobalt you can not simply raise the dosage or take it for to long *too much risk after 400 mg* even asystole (heart stop, dont worry they did not die and they got their money) in three guys after taking one dose of 900 mg in phase 1. I look at it as a bridge until autifony or sf0034 come out. Their is no question in my mind that they are in the right track, it will be a cure that will work fast and easy for recent tinnitus that will take longer depending on the years (and higher dosage). At the worst it will be a pill like the one i take for hipertension every day. I just hope that is not that expensive and that it wil be easy to aquire by everybody because this condition is indeed cruel.

well it is cruel but no one cares honestly and no one understand, when i said (and i am at the end) that i will kill myself they scream on me that i will kill myself becouse some beep in head.

people dont know what is tinnitus and they can not understand it. what they can not see they dont understand.

and 1200mg dosage per once daniel used or @Danny Boy, so it is not deadly, but again he is angel with gray wings, hard to kill

he got some better but he used 3 pills in combination and changed so many dosages like 1x 1200 and so on... so well we can as did anyone got permanent reduction just from trobalt... i think not

Congrats! If I could:

What is your a) dose, b) change (10/10 to 2/10)? c) side effects?

dosage per day between 800 to max 1200 sometimes 1400

change first 3 month from 9/10 to 2/10 then it went back so last 7 monts i use it for sleep becouse trobal has no effect on my tinnitus max 5%

all possible side effects except heart, liver, some kidney stones

trobalt did not cure my tinnitus at all, but it helps to sleep

Interesting. Agreed that outside is very healing; at least, temporarily. Still trying to figure out why certain frequencies terminate T for up to 20 seconds at a time. So, http://www.audionotch.com/app/tune/ at 8234 Hz just seems to make my "high freq" T dissipate rapidly--but only for a short period. The co-founder explained it to me: http://www.audionotch.com/blog/tinnitus/residual-inhibition-for-tinnitus/ but my simple layperson's CPU doesn't get it...

[EDIT - AUDIONOTCH EXPLANATION]

Some of our users have noticed that listening to their tinnitus frequency using our tinnitus tuner, and then turning the computer generate sound off, can result in a temporary reduction in their tinnitus tone. This is a known phenomenon that has been studied and is known as residual inhibition. To read more about this phenomenon, click here to read a paper on the subject by Canadian researchers.

Interestingly, the mechanism of function of this procedure does not contradict the proposed mechanism of notched sound therapy. Notched sound therapy works by lateral inhibition in order to suppress the spontaneously firing tinnitus percept associated neurons. Residual inhibition works by increasing the auditory input at the exact frequency of the tinnitus frequency, thereby reducing the overall auditory system's need to "compensate" for the reduced input at the damaged hearing frequencies (it is this compensation process that inadvertently creates the tinnitus percept by increasing the overall auditory system's sensitivity level).

this was know 3000 years ago in ancient Greece, when they sit by sea same tones produced stop their tinnitus, it is in the scrolls

 

[Greg Moreau]

Thank you. I'm guessing there will be no panacea (no one cure), but a combination therapy, no? Seems most likely scenario...

 

[Danny Boy]

well it is cruel but no one cares honestly and no one understand, when i said (and i am at the end) that i will kill myself they scream on me that i will kill myself becouse some beep in head.

people dont know what is tinnitus and they can not understand it. what they can not see they dont understand.

and 1200mg dosage per once daniel used or @Danny Boy, so it is not deadly, but again he is angel with gray wings, hard to kill

he got some better but he used 3 pills in combination and changed so many dosages like 1x 1200 and so on... so well we can as did anyone got permanent reduction just from trobalt... i think not



dosage per day between 800 to max 1200 sometimes 1400

change first 3 month from 9/10 to 2/10 then it went back so last 7 monts i use it for sleep becouse trobal has no effect on my tinnitus max 5%

all possible side effects except heart, liver, some kidney stones

trobalt did not cure my tinnitus at all, but it helps to sleep



this was know 3000 years ago in ancient Greece, when they sit by sea same tones produced stop their tinnitus, it is in the scrolls

I'm not an angel, or at least I don't think I am?

 

[Christian78]

I'm not an angel, or at least I don't think I am?

When you fell on the ground, other angels brainwashed you so you dont know
If you knew and show it then you would soon perish.


You are angel god protect you from tinnitus and he reduced it. Can you tell me about keppra who have been using it so i can ask people please, i would like to buy it here because i can buy all on black here, for maximum 3 months.

love you as good friend from old time... years back