Retigabine (Trobalt, Potiga) — General Discussion

[dan]

I feel somewhat better about that drug now.. If it can atleast treat it to some degree thats good enough for me

I have major doubts about it passing trials at this point.....Trials have been going on months now and not one single person has come forth saying it did anything for them.

I remember a guy on the Yuku form who was in another huge tinnitus drug trial - I forgot the name off the top of my head, but it was totally scrapped and sold off to Japan for further investigation.
That guy said the drug did not do anything for him and he knew of no others at the hospital trial place who had good results and lo and behold, nothing came of it.

 

[Danny Boy]

I have major doubts about it passing trials at this point.....Trials have been going on months now and not one single person has come forth saying it did anything for them.

I remember a guy on the Yuku form who was in another huge tinnitus drug trial - I forgot the name off the top of my head, but it was totally scrapped and sold off to Japan for further investigation.
That guy said the drug did not do anything for him and he knew of no others at the hospital trial place who had good results and lo and behold, nothing came of it.

They could always repurpose it for hyperacusis.

 

[Danny Boy]

So autifony created trobalt?

Nope...Dr Charles Large did and he left to create Autifony.

 

[dan]

They could always repurpose it for hyperacusis.

Nah, it was a total disaster and utter failure. Tens upon tens of millions of dollars wasted....unless you consider it an investment for future research initiatives to learn from past mistakes.

 

[Danny Boy]

Nah, it was a total disaster and utter failure. Tens upon tens of millions of dollars wasted....unless you consider it an investment for future research initiatives to learn from past mistakes.

Anyway...I wouldn't imagine this to be a failure just yet...I mean, they could always mix it with KV7. It ain't over until the fat lady sings.

 

[dan]

Anyway...I wouldn't imagine this to be a failure just yet...I mean, they could always mix it with KV7. It ain't over until the fat lady sings.

Why is it always a fat lady? But yeah we will find out this Fall whether we like it or not.

 

[Danny Boy]

Why is it always a fat lady? But yeah we will find out this Fall whether we like it or not.

It's a colloquialism lol...Anyway, let's just be hopefully, as it's better than being negative, that'll just make us sad...

 

[valeri]

I have major doubts about it passing trials at this point.....Trials have been going on months now and not one single person has come forth saying it did anything for them.

True!
It definetly doesn't look promising

 

[Xorthian]

I have major doubts about it passing trials at this point.....Trials have been going on months now and not one single person has come forth saying it did anything for them.

But not a lot of people from TT are in aut063 trial right, and there is still risk that people were given placebo instead of med. It's not participants in medical trials are so hyped up to go and spread good word everywhere. Are they even allowed to talk about results? What if someone was in trial and went to newspaper and told them he got cured because of some medicine he tried but turns out this med doesnt pass trials later. That would be seriously damaging to companies developing meds.

Nope...Dr Charles Large did and he left to create Autifony.

Then he probably knows what he is doing. I mean - 20 years of experience in one very specific field instead of trying to do hundreds of different things right http://www.autifony.com/autifony-people-board.asp

And Danny from what I understand RTG or RTG+Keppra helps you a bit with T volume right?

 

[Danny Boy]

But not a lot of people from TT are in aut063 trial right, and there is still risk that people were given placebo instead of med.



Then he probably knows what he is doing. I mean - 20 years of experience in one very specific field instead of trying to do hundreds of different things right http://www.autifony.com/autifony-people-board.asp

And Danny from what I understand RTG or RTG+Keppra helps you a bit with T volume right?

Yep...It does....Anyway, I do believe the KV3 channels do help...But keppra isn't potent enough...I mean the replacement for keppra is 10x more potent....So potency is important.

 

[Xorthian]

Yep...It does....Anyway, I do believe the KV3 channels do help...But keppra isn't potent enough...I mean the replacement for keppra is 10x more potent....So potency is important.

Then I'm going to not abandon my hope. If your cocktail helps you and it isn't placebo effect (lets say there is 50% chance) I'm 100% sure that scientists that spend their entire lives to advance medicine and help people will figure everything out.

@dan
Also last but not least - I still think we are in minority here. People don't really care about others that much. When someone goes to medical trials he goes for himself not to help and give hope to others mostly.
We have 7500 members on site. To get into aut063 trials you need to be in UK - How many members we have from there - 1000 in total maybe? Then you have to pass very specific criteria from 6 months to up to 18. That gives maybe 200 members? There was also some hearing loss requirement or something - that narrows it down further. I think not every member also checks site often, some registered posted couple of times and never came back. Probably not every from those eligibles have as bothersome T to risk being on trial. Maybe 5 people could get in? Thats generous number as well because it turns out 3 people got in afterall
https://www.tinnitustalk.com/threads/autifony-phase-ii-trial-participants-experiences.8339/page-2

I have no idea whats the chance they were given placebo. If they didnt and aut063 failed it might be because dosage was too low - thats first stage2 trial so it wouldn't be that surprising if they had to rerun this test with modifications to drug or ammount of tabs you need to take. Or maybe they were cases that had to take it for 1-2 months more to see any positive result.

What I was getting at - better to be positive than doom and gloom. No point in being super hopeful as well - you cant adjust to living with T then, but having a glimmer of hope might be just what some people need so lets not take it from them.

 

[Danny Boy]

Then I'm going to not abandon my hope. If your cocktail helps you and it isn't placebo effect (lets say there is 50% chance) I'm 100% sure that scientists that spend their entire lives to advance medicine and help people will figure everything out.

@dan
Also last but not least - I still think we are in minority here. People don't really care about others that much. When someone goes to medical trials he goes for himself not to help and give hope to others mostly.
We have 7500 members on site. To get into aut063 trials you need to be in UK - How many members we have from there - 1000 in total maybe? Then you have to pass very specific criteria from 6 months to up to 18. That gives maybe 200 members? There was also some hearing loss requirement or something - that narrows it down further. I think not every member also checks site often, some registered posted couple of times and never came back. Probably not every from those eligibles have as bothersome T to risk being on trial. Maybe 5 people could get in? Thats generous number as well because it turns out 3 people got in afterall
https://www.tinnitustalk.com/threads/autifony-phase-ii-trial-participants-experiences.8339/page-2

I have no idea whats the chance they were given placebo. If they didnt and aut063 failed it might be because dosage was too low - thats first stage2 trial so it wouldn't be that surprising if they had to rerun this test with modifications to drug or ammount of tabs you need to take. Or maybe they were cases that had to take it for 1-2 months more to see any positive result.

What I was getting at - better to be positive than doom and gloom. No point in being super hopeful as well - you cant adjust to living with T then, but having a glimmer of hope might be just what some people need so lets not take it from them.

I wouldn't disgrace Autifony just yet....We don't know the results and even if it's like a 50% reduction that will be enough. The point is, we'll know later this year. Let's just be hopeful. I can see this drug being fast-tracked if all goes well. I say it will be out within 5 years or even less depending on the outcome.

 

[locoyeti]

Easier said than done!
Went through a whole lot of trouble to get one box!
This drug not available in Australia so talking to dr is out of option.
Leaflet that comes with meds is in some foreign language (got it from Switzerland so it could be some German version and Spanish). All I understood was epilepsy and maximum dose of 1200mg, not many universal words

@valeri it looks like given your constraints, what you want to accomplish is a sense of whether or not the drug will work for you. to that end i would ramp up as quickly as possible, and taper down even faster. i don't think slow taper down (or up) is important at all, i think that is mostly just for epilepsy patients so that the quick change of dosages doesn't cause an increase in seizure. you should try to get to 300mgTID (300mgx3) a day as quick as possible (you can do this in about a week if you increase 50mgTID every 2-3 days, starting from 1oomgTID). i did not taper down at all, basically stopped cold turkey, and it did not effect me at all. i also tapered up very fast. if you had more pills you could perhaps take your time with it, but i think in your position your main goal is to see 1. if this drug does anything for you, and 2. at what dosage does it have an effect.

 

[valeri]

@valeri it looks like given your constraints, what you want to accomplish is a sense of whether or not the drug will work for you. to that end i would ramp up as quickly as possible, and taper down even faster. i don't think slow taper down (or up) is important at all, i think that is mostly just for epilepsy patients so that the quick change of dosages doesn't cause an increase in seizure. you should try to get to 300mgTID (300mgx3) a day as quick as possible (you can do this in about a week if you increase 50mgTID every 2-3 days, starting from 1oomgTID). i did not taper down at all, basically stopped cold turkey, and it did not effect me at all. i also tapered up very fast. if you had more pills you could perhaps take your time with it, but i think in your position your main goal is to see 1. if this drug does anything for you, and 2. at what dosage does it have an effect.

With what I've got I can maybe do one week on 300 TID,
I'm just scared of side effects and how it would effect me working and functioning in general, especially by taking so much with no taper up.
Maybe I should try to get few more boxes and give it a proper go.

 

[nills]

With what I've got I can maybe do one week on 300 TID,
I'm just scared of side effects and how it would effect me working and functioning in general, especially by taking so much with no taper up.
Maybe I should try to get few more boxes and give it a proper go.

I`m more on the side to do it a bit slower. Not as slow as they advice but atleast give yourself some time to get used to it. I also think that tapering has to do with the body being able to adjust to the changes occuring in the body and to being able to fill in the gap you create by a fast taper down. best of all I would call a neurologist and ask the question. I would be glad to hear what exactly is the effect and differences of a slow or fast taper with these drugs. If it has effect on seizures it will have effect on T also.

yesterday I did a 300-200-300 ... first 300 did nothing really, but the last one got my mind going really fast and I was a bit clumsy at work dropping stuff and just trying to do things that didn`t make sense. trying to fit something that obviously wouldn`t, and stuf like that. But I have very low T now waking up. lowest ever been in these last 3 weeks of Trobalt.

 

[Codaz]

Yesterday I was feeling quite brave and made myself a guinea pig, lol.
I took 200mg Tegretol at around 22:00, then 250mg Keppra at 23:00, then 200mg Trobalt at midnight.

I slept for 8 hours straight. I woke up with 0 T and after 5 hours it remains at a nice round 0.
I wish someone would study those anti-epileptic drugs and make a nice cocktail out of them. At least for me, they work wonders. However, due to unpredictable side-effects, I'm not planning on making the above experiment on a regular basis.

My dental surgeon suggested Tegretol (carbamazepine) as well. Are you going to try to up the dosis? I did not take it, yet. A neurologist I visited suggested going to 1200 mAH as his opinion was "200mg does about nothing". He said that tegretol will make you sleepy. You have to taper up and down he said.

 

[undecided]

My dental surgeon suggested Tegretol (carbamazepine) as well. Are you going to try to up the dosis? I did not take it, yet. A neurologist I visited suggested going to 1200 mAH as his opinion was "200mg does about nothing". He said that tegretol will make you sleepy. You have to taper up and down he said.

Up the dosage? No way.
Tegretol is pretty nasty. Nastier than RTG. Maybe I'll do the occasional 200mg but nothing more.

 

[Christian78]

With what I've got I can maybe do one week on 300 TID,
I'm just scared of side effects and how it would effect me working and functioning in general, especially by taking so much with no taper up.
Maybe I should try to get few more boxes and give it a proper go.

I agree with @locoyeti. I understand valery that you have problem, and you are afraid.

I went in 3 days to 300mg.
@Danny Boy how much time did you need to get to full dosage?
MPT guy who benefited most, and got his tinnitus resolved without know reason (not provable was it natural or medical way as there is no case that retigabine helped anyone else in World), he use 100x3 first day, next 200, next 300x3....

Side effects are yes being drunk and cant speak but well, we spoke as we speak same language... You want to kill yourself... now you have to make a choice, either try this drug to some 3x250mg and live with it and work slower avoid it during time on job... or as you want to kill yourself... because it will be hard, you cant have all 100%... you can chose. try to get 1 month sick. and you can go of it fairly fast, you can get pains in body like restless lee

 

[Mpt]

Just checking in.. I haven't been on the forum in awhile, as far as tinnitus goes-- I don't have it. Curiously though I started back with a meditation practice and on my third day of silent meditation I started hearing/feeling a low hum in my brain so I stopped cold turkey at that point. The hum wasn't similar to my old tinnitus sound in any way and I haven't heard it in any circumstances since, maybe this is Jastebroff's elusive sound that everyone hears, etc. Hope all

My advice to any of you is to try anything and everything you can, without experimentation there defintiely will never be a tinnitus cure- in fact the belief that there will never be a cure among tinnitus advocates and patients will indeed become a self-fulfilling prophecy. Advocate for yourselves and if you are inclined to donate money for tinnitus, donate directly to the Tinnitus Research Initiative or this site, not certain other organizations that have a legacy of ineptitude and failure

 

[Danny Boy]

Just checking in.. I haven't been on the forum in awhile, as far as tinnitus goes-- I don't have it. Curiously though I started back with a meditation practice and on my third day of silent meditation I started hearing/feeling a low hum in my brain so I stopped cold turkey at that point. The hum wasn't similar to my old tinnitus sound in any way and I haven't heard it in any circumstances since, maybe this is Jastebroff's elusive sound that everyone hears, etc. Hope all

My advice to any of you is to try anything and everything you can, without experimentation there defintiely will never be a tinnitus cure- in fact the belief that there will never be a cure among tinnitus advocates and patients will indeed become a self-fulfilling prophecy. Advocate for yourselves and if you are inclined to donate money for tinnitus, donate directly to the Tinnitus Research Initiative or this site, not certain other organizations that have a legacy of ineptitude and failure

Don't worry, we will haha

We will defeat the tinnitus...

MPT what supplements were you on if any? And how long did you have tinnitus before you started trobalt?

 

[Adam G]

Hi my name is Adam, I have had tinnitus for over a year and I am 18, I got it from having horrible ear infections as kid making me prone to it, then I got into playing guitar and played in a loud band, bringing forth tinnitus. Its a high pitched ringing that is constant and only really noticeable in quiet environments. I have coped with it well up until recently where noise exposure while mowing the lawn caused it to worsen. I feel a slight pain in my ears just recently and are a little bit prone to loud noises now. I haven't played guitar in over a week, and have become a little bit of upset. I looked all over to see if there are treatments lately but this came to my attention and has brought me hope that later in life I will hear silence again. Though it is tolerable during the day and only comes out when I focus on it, at night i need white noise to fall asleep and it can be bothersome. During my spike it was unbearable and really distressing. Because I am so young I am concerned that it will gradually get worse and ruin my way of life and my passion for guitar. MPT I am happy for you, but do you have any idea on whether this may be commercially available? What are the side effects? Does it work for people with high pitched tinnitus? What about the others in the study, do they have improvements? Do you believe that us tinnitus suffers will have a safe way to get rid of tinnitus? I know you probably don't know the answers to these questions but try asking your doctor or whoever on whether this treatment would be suitable for the public in the years to come, and let me know if you can. I just want to have relief or a sense of hope for myself and others.

 

[Danny Boy]

Hi my name is Adam, I have had tinnitus for over a year and I am 18, I got it from having horrible ear infections as kid making me prone to it, then I got into playing guitar and played in a loud band, bringing forth tinnitus. Its a high pitched ringing that is constant and only really noticeable in quiet environments. I have coped with it well up until recently where noise exposure while mowing the lawn caused it to worsen. I feel a slight pain in my ears just recently and are a little bit prone to loud noises now. I haven't played guitar in over a week, and have become a little bit of upset. I looked all over to see if there are treatments lately but this came to my attention and has brought me hope that later in life I will hear silence again. Though it is tolerable during the day and only comes out when I focus on it, at night i need white noise to fall asleep and it can be bothersome. During my spike it was unbearable and really distressing. Because I am so young I am concerned that it will gradually get worse and ruin my way of life and my passion for guitar. MPT I am happy for you, but do you have any idea on whether this may be commercially available? What are the side effects? Does it work for people with high pitched tinnitus? What about the others in the study, do they have improvements? Do you believe that us tinnitus suffers will have a safe way to get rid of tinnitus? I know you probably don't know the answers to these questions but try asking your doctor or whoever on whether this treatment would be suitable for the public in the years to come, and let me know if you can. I just want to have relief or a sense of hope for myself and others.

Head over to the hyperacusis thread, I mention how I managed to get rid of my hyperacusis.

 

[Codaz]

Up the dosage? No way.
Tegretol is pretty nasty. Nastier than RTG. Maybe I'll do the occasional 200mg but nothing more.

Why is it so nasty?

 

[Christian78]

Why is it so nasty?

because it has so many side effects, destroys bone marrow

 

[Danny Boy]

I agree with @locoyeti. I understand valery that you have problem, and you are afraid.

I went in 3 days to 300mg.
@Danny Boy how much time did you need to get to full dosage?
MPT guy who benefited most, and got his tinnitus resolved without know reason (not provable was it natural or medical way as there is no case that retigabine helped anyone else in World), he use 100x3 first day, next 200, next 300x3....

Side effects are yes being drunk and cant speak but well, we spoke as we speak same language... You want to kill yourself... now you have to make a choice, either try this drug to some 3x250mg and live with it and work slower avoid it during time on job... or as you want to kill yourself... because it will be hard, you cant have all 100%... you can chose. try to get 1 month sick. and you can go of it fairly fast, you can get pains in body like restless lee

I can't remember, maybe a few weeks. It didn't take that long, but I didn't care at the point.

 

[Christian78]

Head over to the hyperacusis thread, I mention how I managed to get rid of my hyperacusis.

he was scared to go with dosage after taking 50 mg that made his blurry vision, but did not give up and he lives ok...

 

[Codaz]

because it has so many side effects, destroys bone marrow

After short use?

 

[Geo]

How many of you have tried trobalt with great results and how low is your tinnitus while on it i never thought i might need this but my T just keeps reaching new levels which i cant take anymore i cant function not alone pay attention for 3 minutes sleep is gone... I need to calm this down or it might be my life at this point..how many of you have had bad side effects need a little more info so i can maybe go ahead and try this if it means saving my sanity...on another note how many tones do you have ? My T increaes to often it is not stable so im not sure if itll work..

 

[Danny Boy]

How many of you have tried trobalt with great results and how low is your tinnitus while on it i never thought i might need this but my T just keeps reaching new levels which i cant take anymore i cant function not alone pay attention for 3 minutes sleep is gone... I need to calm this down or it might be my life at this point..how many of you have had bad side effects need a little more info so i can maybe go ahead and try this if it means saving my sanity...on another note how many tones do you have ? My T increaes to often it is not stable so im not sure if itll work..

Of you're on the verge of killing yourself then the side-effects won't matter. The worst side-effect is it can impair your eyesight, so it's very risky. Also some people have reported kidney issues. To put it in simple terms, thanks viking for this one, keppra is coffee, trobalt is a bomb.

 

[Geo]

Of you're on the verge of killing yourself then the side-effects won't matter. The worst side-effect is it can impair your eyesight, so it's very risky. Also some people have reported kidney issues. To put it in simple terms, thanks viking for this one, keppra is coffee, trobalt is a bomb.

Keppra gave me side effects i can only inagine what trobalt would do to me.. My T has no control it keeps shooting up and increasing in volume every fkn week its hard to even imagine it but it does idk why its hard to keep taking this.. I see how people struggle with one permanent spike in a long while, now imagine me its every couple days it just reaches new levels i cant even hear background noises anymore can barely keep a conversation without my ears blasting out of my head and i mean blasting not barely popping out for air...i havent met no one single person in here with my exact symptoms they have severe t but its stable or react but comes down again as mine does not.. This is just too extreme..