Retigabine (Trobalt, Potiga) — General Discussion

[Johno]

I was on xanax nearly 1,5 years. I cut it off, but gradually of course. I had some withdrawal effects - head pain (like after drinking 10 cups of cofee) and depresions, but not very strong, T increase. Those effects gone after a week or two.

 

[dan]

@Viking

Thanks for your replies.

 

[Christian78]

Is that something you know or just your own thought?

Retigabine is supposed to be used in treatment of tinnitus prevention or when its appears. So nothing invented.

 

[Christian_B]

Retigabine is supposed to be used in treatment of tinnitus prevention or when its appears. So nothing invented.

Well mpt had it for 5 months before taking it? I've had mine for a month only.. I might ask my ENT trobalt.

 

[benryu]

@Mpt has it 5 months, his one has not establish himself in brain, and that is biggest possibility how he can manipulate his tinnitus.
Us in a case of older t, we have it definitely harder, effect that is compared with placebo is as written placebo can achieve max 20%.

Dan I believe it can not be erased as older it is, it can be diminished only

Sorry but this not true from a scientific perspective unless you have read a new article I haven't read yet, I have explained several times on the forum with scientifc sources & argumentation why time doesn't make any difference.

There is just an idea of inertia because of the brain plasticity, but no worry to have for older T. If this work for recent, it will for several years old T.

Same comment goes for the AUT00063.

@Christian_B no worry to have, you can get trobalt a bit sooner, the effect is just theoric as we haven't tested yet, but there is a good chance it helps to stabilize you T. or at least the spikes. The sooner the less longer you have to use the drug for a sustainable effect. But if you want to wait for the real deal, the AUT00063 it's ok too.

 

[Hengist]

I am trying to get trobalt for me and my friend with tinnitus who has had it for 10 years. I think we might go 150mg, 300mg, 600mg, 800mg each step increasing after a week. What do you think about this, any opinions?

 

[locoyeti]

I am trying to get trobalt for me and my friend with tinnitus who has had it for 10 years. I think we might go 150mg, 300mg, 600mg, 800mg each step increasing after a week. What do you think about this, any opinions?

I and many others on this forum think it could work, but it is ultimately your decision. I would follow the dosage chart that @benryu posted and only increase by 100mg per week. Also, I would suggest you get a baseline eye exam at an opthamologist.

 

[Christian_B]

I and many others on this forum think it could work, but it is ultimately your decision. I would follow the dosage chart that @benryu posted and only increase by 100mg per week. Also, I would suggest you get a baseline eye exam at an opthamologist.

What would such eye exam do exactly? - Me myself, see perfect, but i have these flying objects which most people have, i just have it all the time of the day, not only when i watch on all white walls.

@benryu - I'm not really updated with all those 100+ hours of articles about all these meds and stuff, so could you explain a bit about the ETA for that drug getting on the market?

 

[rtwombly]

What would such eye exam do exactly? - Me myself, see perfect, but i have these flying objects which most people have, i just have it all the time of the day, not only when i watch on all white walls.

@benryu - I'm not really updated with all those 100+ hours of articles about all these meds and stuff, so could you explain a bit about the ETA for that drug getting on the market?

Trobalt can cause pigmentation changes in the retina, which could lead to vision loss. FDA advises a baseline eye test and 6 month checkups, discontinuing the drug if changes are detected.

 

[Hudson]

How is everyone who is taking the medication doing? What are your tinnitus levels like? I know I ask this a lot, but I would like to get as much info as possible. I'm trying to get this medication from my psychiatrist as well.

 

[Christian78]

People are complicated, mix them with strange drugs there is a mess, low tinnitus + Trobalt = no tinnitus IT SEEMS extreme tinnitus+ Trobalt = no spikes.

@benryu Ask DAN he has a link where some doctor explain that tinnitus moves to other part of brain, mortised and not much can be done. 4+ years makes difference...

 

[benryu]

People are complicated, mix them with strange drugs there is a mess, low tinnitus + Trobalt = no tinnitus IT SEEMS extreme tinnitus+ Trobalt = no spikes.

@benryu Ask DAN he has a link where some doctor explain that tinnitus moves to other part of brain, mortised and not much can be done. 4+ years makes difference...

There is no such things as the T. moving, please quote source.

Because your statement contradicts all research papers that were released in the last 3 years.
T. is isolated, it doesn't move, it doesn't spread, it's not a virus, and the auditory system remains perfectly healthy. It's just a state bringing a synaptic dysfunction, brain plasticity may consolidate the state over the years but if a drug regulate the right potassium channels, it will stop or reduce an awful lot the T. and over the time plasticity will go the other way and consolidate the way it should be.

 

[benryu]

What would such eye exam do exactly? - Me myself, see perfect, but i have these flying objects which most people have, i just have it all the time of the day, not only when i watch on all white walls.

@benryu - I'm not really updated with all those 100+ hours of articles about all these meds and stuff, so could you explain a bit about the ETA for that drug getting on the market?

Depending on your location and you health condition you could be eligible to participate to the trial. (starting this autumn I think, I don't have checked the information)

Now for the time to market it was extensively discussed in the AUT00063 thread. Providing the drug works (lol) it will depend on many factors and could oscilate between for 1,5 year for early restricted access to 3 years. (4 years in certain countries)

 

[cullenbohannon]

How is everyone who is taking the medication doing? What are your tinnitus levels like? I know I ask this a lot, but I would like to get as much info as possible. I'm trying to get this medication from my psychiatrist as well.

Hey Hudson im not currently taking it but not to long ago @Mpt said he would probably start to update every week or so because he didn't want to keep updating he heard nothing. So in case anyone didn't see that message and were curious i wanted to post that.

 

[Martin69]

There is no such things as the T. moving, please quote source.

Because your statement contradicts all research papers that were released in the last 3 years.
T. is isolated, it doesn't move, it doesn't spread, it's not a virus, and the auditory system remains perfectly healthy. It's just a state bringing a synaptic dysfunction, brain plasticity may consolidate the state over the years but if a drug regulate the right potassium channels, it will stop or reduce an awful lot the T. and over the time plasticity will go the other way and consolidate the way it should be.

I also don't think it makes a difference.
My T was turned on at a certain point and stayed the same since.
I don't see much difference between 5 minutes and 5 years after onset.
Something simply changed in my brain. But of course I am no doctor.
Mine was caused by anxiety.

 

[Johno]

Doctors knows shit about T (mostly). - My experiences.

 

[inadmin]

There is no such things as the T. moving, please quote source.

Because your statement contradicts all research papers that were released in the last 3 years.
T. is isolated, it doesn't move, it doesn't spread, it's not a virus, and the auditory system remains perfectly healthy. It's just a state bringing a synaptic dysfunction, brain plasticity may consolidate the state over the years but if a drug regulate the right potassium channels, it will stop or reduce an awful lot the T. and over the time plasticity will go the other way and consolidate the way it should be.

It was mentioned here that the signal travels from the ear to the brain after 3 months or so - in the AM101 thread (data from Auris)

 

[benryu]

It was mentioned here that the signal travels from the ear to the brain after 3 months or so - in the AM101 thread (data from Auris)

Sorry for incisting, but there is no concrete source demonstrating what you said, please share a link or somethig, the AM-101 is basically a glutamate blocker that tries to prevent the glutamate to affect potassium channels.

Acoustic trauma -> hair cells die -> they release glutamate (I simplify here)-> the glutamate turn the potassium channels in a low activity state in the freaking auditory cortex-> No potassium to control excitability = tinnitus

It doesn't move from the auditory cortext, imagine it would go to Gustatory cortex, you could taste T. ! I am pretty sure it would taste pretty bad tho.

Please guys stop with this weird idea, the T. is going nowhere, time only matters when hair cells die as glutamate is being released, for the rest it doesn't move.

 

[Johno]

It was mentioned here that the signal travels from the ear to the brain after 3 months or so - in the AM101 thread (data from Auris)

Only a theory. Unproven.

 

[inadmin]

Sorry for incisting, but there is no concrete source demonstrating what you said, please share a link or somethig, the AM-101 is basically a glutamate blocker that tries to prevent the glutamate to affect potassium channels.

Acoustic trauma -> hair cells die -> they release glutamate (I simplify here)-> the glutamate turn the potassium channels in a low activity state in the freaking auditory cortex-> No potassium to control excitability = tinnitus

It doesn't move from the auditory cortext, imagine it would go to Gustatory cortex, you could taste T. ! I am pretty sure it would taste pretty bad tho.

Please guys stop with this weird idea, the T. is going nowhere, time only matters when hair cells die and glutamate is being released, for the rest it doesn't move.

Dont get me wrong i would love that theory to be totally wrong. Just quoting. I'll check for the link.

 

[EddyLee]

T moving into brain and became static seems like a nice excuse for when some drugs are not working
Viking had T for so so long and yet trobalt quiet down his T so significantly.
My T is longer than a year now and yet sometimes it can quiet down to 0.5/10.
How could all this be happening if T moves into our brain and became static?

 

[Christian78]

Sorry for incisting, but there is no concrete source demonstrating what you said, please share a link or somethig, the AM-101 is basically a glutamate blocker that tries to prevent the glutamate to affect potassium channels.

Acoustic trauma -> hair cells die -> they release glutamate (I simplify here)-> the glutamate turn the potassium channels in a low activity state in the freaking auditory cortex-> No potassium to control excitability = tinnitus

It doesn't move from the auditory cortext, imagine it would go to Gustatory cortex, you could taste T. ! I am pretty sure it would taste pretty bad tho.

Please guys stop with this weird idea, the T. is going nowhere, time only matters when hair cells die as glutamate is being released, for the rest it doesn't move.

Strange every experiment ask for those under year. Dan is not online but i will ask him.

To add evidence that tinnitus does not move is well OK. Find me evidence tinnitus does not move to limbic system. Lack of evidence is not proof. there was some theory that t moves to limbic sistem... i try to find

 

[benryu]

Strange every experiment ask for those under year. Dan is not online but i will ask him.

To add evidence that tinnitus does not move is well OK. Find me evidence tinnitus does not move to limbic system. Lack of evidence is not proof. there was some theory that t moves to limbic sistem... i try to find

They ask under 1 year because they need faster & more impressive results for investors. I would do the exact same thing if I were them, it's easy to assume that the older the T. is, the more inertia and thus time the treatment will need. They want fast result to show their drug kicks ass and get more money, so they will play the game in easy mode.

That being said, limbic system is the region controlling stuff like emotion, depression, motivation, behavior, consciousness etc... When the T. activation occurs, (I described above what happens), your brain becomes conscious that there's and unexpected noise, so for sure it stimulate the limbic system, in the same fashion that T. depress you and will overstimulate the limbic region. It doesn't mean your T. moves, it just mean some other brain region react to your T., it's normal.

In the same manner your Hippocampus is going to react to T. by helping habituation and creating interactions with the prefrontal cortex. Again it doesn't mean your T. moves, it just stimulates other part of the brain.

Now maybe if I clear plasticity out it will help, I have the feeling that a lot of people think plasticity as some permanent and inalterable brain reformation, this is NOT the case.

The brain is extremly lazy and if the brain notices a new pattern that could be optimized (make it shorter, or establish a direct connection), it will do it. When T. happens, the brain fight for a short time, then says "fuck this shit, I am just going to assume it's normal" and it adapts some connection to make sure not to spend energy anymore. (I simplify a lot here, but it's pretty much what happens).

Now if a drug comes and regulates the T. through potassium channels, the brain will fight for some time, then say "fuck this, I am just going to assume it's normal" and it will adapt connections again.

So the conclusion is: The T. doesn't move but stimulate other parts of the brain, plasticity is just a lazy behavior of the brain and is not permanent by any mean.

 

[cullenbohannon]

@benryu Did a great job explaining this, I thought id comment anyway.

So assuming that it becomes memorized by the brain then when changes in brain plasticity occurs from Tinnitus that it becomes stuck that away and is irreversible. But the original plasticity changed did it not? So obviously its not true that plasticity becomes permanent or else it would have never changed in the first place. Just my thoughts,i dont know much about science or anything but the stuff above makes sense to me .If any one can clarify this id love to hear your thoughts or am i totally off the mark here?

Also we should not expect immediate results, it takes time as Benryu and other on here have explained for the brain to readjust while taking the medications. Its not something that will happen after a few weeks, it may take longer for some then others. Take care all.

 

[Jay M]

They ask under year because they need faster more impressive results for investors. I would do the exact same thing if I were them, it's easy to assume that the older the T. is, the more inertia and thus time the treatment will need. They want fast result to show their drug kicks ass and get more money, so they will play the game in easy mode.

That being said, limbic system is the region controlling stuff like emotion, depression, motivation, behavior, consciousness etc... When the T. activation occurs, (I described above what happens), your brain becomes conscious that there's and unexpected noise, so for sure it stimulate the limbic system, in the same fashion that T. depress you and will overstimulate the limbic region. It doesn't mean your T. moves, it just mean some other brain region react to your T., it's normal.

In the same manner your Hippocampus is going to react to T. by helping habituation and creating interactions with the prefrontal cortex. Again it doesn't mean your T. moves, it just stimulates other part of the brain.

Now maybe if I clear plasticity out it will help, I have the feeling that a lot of people think plasticity as some permanent and inalterable brain reformation, this is NOT the case.

The brain is extremly lazy and if the brain notices a new pattern that could be optimized (make it shorter, or establish a direct connection), it will do it. When T. happens, the brain fight for a short time, then says "fuck this shit, I am just going to assume it's normal" and it adapts some connection to make sure not to spend energy anymore. (I simplify a lot here, but it's pretty much what happens).

Now if a drug comes and regulates the T. through potassium channels, the brain will fight for some time, then say "fuck this, I am just going to assume it's normal" and it will adapt connections again.

So the conclusion is: The T. doesn't move but stimulate other part of the brain, plasticity is just a lazy behavior of the brain and is not permanent b any mean.

What I still don't understand is why some people don't get T with hearing loss? Are there more people with just hearing loss without T?

 

[lapidus]

Strange every experiment ask for those under year. Dan is not online but i will ask him.

To add evidence that tinnitus does not move is well OK. Find me evidence tinnitus does not move to limbic system. Lack of evidence is not proof. there was some theory that t moves to limbic sistem... i try to find

Well, not all experiments/trials. The trial for DBS actually has a requirement for T older than a year.

 

[benryu]

What I still don't understand is why some people don't get T with hearing loss? Are there more people with just hearing loss without T?

It's simply because both phenomenon are independant and non exclusive. I had an acoustic trauma, but no hearing loss. Because of the acoustic trauma a few hair cells were destroyed very rapidly, not enough to block some frequency and decrease my audition, but enough glutamate were released to alter the potassium channels function and induce a T. state.

In the same fashion, you could get acoustic trauma destroying hair cells, decreasing your audition, but not releasing enough glutamate to alter you potassium channels and you won't have T.

 

[Viking]

Dear friends, today I did the ultrasound to the kidneys and bladder, unfortunately I have kidney problems (calcification and kidney stones) and I have the right to discontinue the drug. The doctor who examined me has banned the use of the drug by saying that I have serious health problems. I regret immensely. He was working for a while. I hope for the best for you. God bless you
Ivan

 

[benryu]

Dear friends, today I did the ultrasound to the kidneys and bladder, unfortunately I have kidney problems (calcification and kidney stones) and I have the right to discontinue the drug. The doctor who examined me has banned the use of the drug by saying that I have serious health problems. I regret immensely. He was working for a while. I hope for the best for you. God bless you
Ivan

Thanks for trying and helping the community Viking, I hope you get better soon, you deserve it, and don't forget the AUT00063 is around the corner, tables will turn at some point

 

[dan]

@benryu , just wanted to say I enjoy very much reading your posts

Interesting what you said about glutamate inhibiting proper potassium channel function - is that a documented phenomenon?
Where exactly is this process happening?