Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

I suppose the FDA is only interested in the negative side-effects of a drug, so why would there be even 1 case report for a positive side effect...
WARNING: THIS DRUG MAY CURE YOUR TINNITUS!
GSK isn't marketing this drug for tinnitus, so why would they bother to let you know it can relieve tinnitus. GSK realizes that this drug is offered as a last resort epilepsy drug, so why would it risk lawsuits for its off-label use?
GSK is aware of this potential to treat tinnitus, that's why it invested 20% in Autifony, and unsurprisingly AUT-063 was a GSK proprietary molecule.
Do the math !

well they did not market viagra for sex, but i suppose more rich people have problem with sex so they started of label Viagra, and even president Clinton, so if there is enough people i believe.

Dear Dr doctor Negler (NOTE THIS IS FIRST TIME I SAY DEAR!),

I would like from kindness to say that trobalt is not cure.

BUT IT HELPS! I who hard core believer in God, give my word affront of God that i did nto had tinnitus 3 months, nor hyperacusis, and I slept like a log, i walk 12km per day, lost 20 kg, SMILED, loved life. I been having slight side effects but dosage dependent. I may say now i am on 250 mg and going down. T goes up to disaster, and hyperacusis irritates me, but it also fall to 5.

I will probably tomorrow go to 200 mg and see how it feels, if there is need i will take 250 like in evening, for sleep. Yes now i have t, morning and evening i think can be worst, i must be careful not to stress.

But this is not important, i will go off, slowly, i been on max 400... but it is I suppose oversaturated. So i will go bit off. I noticed now on 250 i can speak swedish fluently. I can even type here without using spell checker. I read ok, i dont have problem with reading. So to say, all side effect like: hand shaking, blurry vision, all that i got from trobalt are going away. I do have problem with low blood pressure last 10 days, but it must be because i eat little salt. I went on bike and ride to my doctor and been there sit down, and nurse took blood tests on liver, kidneys etc and most are ok, other will be on friday. They said to be more active. I came home, i should take my next pill, nut when i went inside home i could not hear my tinnitus. Why i dont know.

I never had these variations before trobalt, those this mean that as i lover trobalt i become more nervous BUT my tinnitus also is GOING down, or it is not so high as it was before. I don't wanna jinx it but even now when i type it to you it is quite nice, i can tolerate, and if i spoke with someone i would not care for it. IF i would take Clonazepam i would say i would be t free!

So DEAR doctor, trobalt has effect! We have to admit it, we will see how is our dear friend and fellow sufferer @Viking do. I pray that he gets good results. In Serbia his medicine cost 4 euro, some Indian generic copy, but people in serbia are using it. My God send his Holy Spirit on him and give him strength and heal him with that medicine he is using.

 

[avocat]

Dear dr,

I suppose because you never gave us nothing better. Every out effort you catch on knife, stub it as hard as possible and let it bleed out until every our hope becomes death. I dont know why you do it, you give us death as hope as solution. Do you like to see us suffer. Is it just you thing. I am lost.

Fine, I'll say it if the mods won't. You seriously need to cool it with your ridiculous, unfounded, frankly hateful personal attacks. You keep accusing Dr. Nagler of this and that, yet you are seriously the most negative poster here constantly spewing vitriol and anger.

 

[Christian78]

Fine, I'll say it if the mods won't. You seriously need to cool it with your ridiculous, unfounded, frankly hateful personal attacks. You keep accusing Dr. Nagler of this and that, yet you are seriously the most negative poster here constantly spewing vitriol and anger.

Honestly,

I did not said to dear doctor nothing. I just hear from other members complains too often so i build up resistance. Anyway dr offen just avoid answer, goes around, post that you found mr advokat is old, i don't care for him. If i could i would delete it. Anyway, point is or was about why we get sabotaged in every attempt to say sky is blue.

I dont have nothing from hating anyone, i wont be cured, but you cant go on acuse me like this too.

 

[Zimichael]

Good grief... Here we go again! Mr. You-Know-Who sticks his face in a thread and it starts to become a war zone AGAIN! This endless, common, ever-repeating cycle...Sigh!

Let's just move on folks and remember we are JUST EVALUATING RETIGABINE HERE...that's it. "Evaluating", not trying to change the world with a crappy drug we all know has severe limitations for our real goal and purpose.

So far we seem to have enough evidence for "Proof of Concept" that a voltage-gated Kv7 Potassium channel modulator appears to "affect" tinnitus. How many other drugs do we have that do that without just dulling you out into 'pretending' that T is affected? Benzo land; 10 beers; anti-depressants, etc., etc. etc.

The Kv thing appears to be "different". It appears to have an effect even in our very small N sample. There is hope and evidence that it can seriously help some people. There is hope that the drug can be altered/improved/etc. in future.

Good enough for me!!! Why the hell does than need to be knocked down????????? [See first paragraph!]

Best, Zimichael

 

[Dr. Nagler]

The topic of this thread is Retigabine (Trobalt, Potiga) - General Discussion. One would presume that "general discussion" allows for both sides of the coin to be presented in a civil and respectful manner. Now in this particular case my carefully considered opinion on the subject happens to differ from the view of the overwhelming majority of folks who are posting in this thread, and again I say that I sincerely hope that I am wrong in that opinion. But that aside, quite frankly I am extremely disappointed in those who have taken subtle and not-so-subtle personal shots at me merely because I have voiced an opinion that does not sit well with them. You know who you are, and you should be ashamed of yourselves.

I wish everybody here - including those who have carried this issue beyond the civil and respectful discussion stage - health and happiness in the coming year. I hope you all find the silence you seek.

Dr. Stephen Nagler

 

[valeri]

Anyway, point is or was about why we get sabotaged in every attempt to say sky is blue.

It really has nothing to do with the "sky is blue" but more along the lines of financial loss for many in medical field who "assist" people with tinnitus.
Starting from useless ENTs, audiologists, psychiatrists, psychologists....
Big pharma making money out of benzos and antidepressants, when at the end it the day we are not truly depressed or anxious, it's tinnitus that needs to be cured because IT IS tinnitus causing all those emotional problems!
Then there's TRT, neuromonics and other primitive sound and musical devices that we buy out of pure desperation.
Thousands of dollars but no clinical trials ever done to prove their efficiency!
Soooo bloody yesterday!

There is no doubt that RTG works for tinnitus, it hasn't given us any permanent results since mpt but I guess that's another topic all together.

So all in all, the sky is blue!!!

 

[Viking]

The topic of this thread is Retigabine (Trobalt, Potiga) - General Discussion. One would presume that "general discussion" allows for both sides of the coin to be presented in a civil and respectful manner. Now in this particular case my carefully considered opinion on the subject happens to differ from the view of the overwhelming majority of folks who are posting in this thread, and again I say that I sincerely hope that I am wrong in that opinion. But that aside, quite frankly I am extremely disappointed in those who have taken subtle and not-so-subtle personal shots at me merely because I have voiced an opinion that does not sit well with them. You know who you are, and you should be ashamed of yourselves.

I wish everybody here - including those who have carried this issue beyond the civil and respectful discussion stage - health and happiness in the coming year. I hope you all find the silence you seek.

Dr. Stephen Nagler

We have just finding it. I don't believe there are offensive people here.
You do well to look at the other side of the coin. I myself have suffered terrible side effects with Trobalt .... but I also found benefit ... so I will not stop ... I'm trying something similar. But the point here is: why a molecule like this (as retigabine) was never investigated? Why was discovered by suffering? You're a doctor, and I appreciate your opinion, but as a doctor must be recognized that the efforts of these people are far superior to expensive therapies sound that for 30 years have tarnished the search. Also we look the other side of the coin, and we have a right to criticize. 85% success with TRT? We do not say more nonsense. Finally, thanks to research and to the courage of a community of people who do not even know, we're really getting somewhere concrete compared to expensive and often useless sound therapy who haven't the goal of healing...but...habituation... after more soffrence, life changed and more other aspects of "tinnitus life"...do not you think it's a little too little?
In light of these events, I would appreciate a lot of you that you are a Doctor, if you could make sure that the tinnitus is not considered a more simple symptom but a serious neurological problem with many impications in the quality and impact of life!
With all my respect
best wishes

 

[Dr. Nagler]

Also we look the other side of the coin, and we have a right to criticize. 85% success with TRT?

Criticize TRT all you want. There is a lot about TRT to criticize, as I have pointed out elsewhere numerous times. And when a true cure for tinnitus comes along, there will be no need for TRT or any of the other habituation-based approaches, which will be absolutely wonderful.

All I am saying is that individuals posting on this board should not take personal shots at me or anybody body else for offering an opinion that does not sit well with them. Criticize the opinion all you want, but try to do it without taking a shot at the individual presenting that opinion.

Dr. Stephen Nagler

 

[Viking]

Criticize TRT all you want. There is a lot about TRT to criticize, as I have pointed out elsewhere numerous times. And when a true cure for tinnitus comes along, there will be no need for TRT or any of the other habituation-based approaches, which will be absolutely wonderful.

All I am saying is that individuals posting on this board should not take personal shots at me or anybody body else for offering an opinion that does not sit well with them. Criticize the opinion all you want, but try to do it without taking a shot at the individual presenting that opinion.

Dr. Stephen Nagler

Dear Doctor:unfortunately my English is not so good, but I do not want to create misunderstandings. I had basically asked the one other thing: You're a doctor at the forefront in the treatment of tinnitus. is very famous your "Personal message" on the ATA websit to support tinnitus suffers. Why not write / help this community, leading to scientific attention the "question retigabine"?
In any case, it is clear that I do not want to disrespect/attack you or play at the baby. I asked your authorities to meet us to walk together towards a resolution of the problem. it is undeniable that tinnitustalk, many courageous people, are writing the history of breakthrough in the search for a cure for tinnitus. This is not to be quarrelsome children. is courage. is science. It should be supported by the authority
Best wishes

Guinea's pig

Ivan

 

[Christian78]

You-Know-Who i think that was name for Voldemort, from Harry Potter, that evil wizard without soul, or rather he split his soul in 7 parts... a very dominant guy and determined to rule the all.

BTW after trobalt tinnitus varies... I am withdrawing and H is higher but i survive, headache is one sipmtom maybe, but other went out , when i take 250 mg now i feel nothing

 

[Dr. Nagler]

I had basically asked the one other thing: You're a doctor at the forefront in the treatment of tinnitus. is very famous your "Personal message" on the ATA websit to support tinnitus suffers. Why not write / help this community, leading to scientific attention the "question retigabine"?

I already offered to help write a letter to ATA requesting that they fund a Retigabine study and explained how I thought the letter should be formulated. I even made suggestions regarding how to get ATA to "fast track" the project.

Dr. Stephen Nagler

 

[dan]

I already offered to help write a letter to ATA requesting that they fund a Retigabine study and explained how I thought the letter should be formulated. I even made suggestions regarding how to get ATA to "fast track" the project.

Dr. Stephen Nagler

We all know you were'nt seriously going to help.
You asked for a statement of the MOA of Retigabine for tinnitus in order for you to write the letter. Well as it happens, that mechanism is unknown, so you withdrew your offer to help.....and if you didn't withdraw then why didn't you submit any letter yet? What are you waiting for may I know?

 

[Christian78]

The topic of this thread is Retigabine (Trobalt, Potiga) - General Discussion. One would presume that "general discussion" allows for both sides of the coin to be presented in a civil and respectful manner. Now in this particular case my carefully considered opinion on the subject happens to differ from the view of the overwhelming majority of folks who are posting in this thread, and again I say that I sincerely hope that I am wrong in that opinion. But that aside, quite frankly I am extremely disappointed in those who have taken subtle and not-so-subtle personal shots at me merely because I have voiced an opinion that does not sit well with them. You know who you are, and you should be ashamed of yourselves.

I wish everybody here - including those who have carried this issue beyond the civil and respectful discussion stage - health and happiness in the coming year. I hope you all find the silence you seek.

Dr. Stephen Nagler

I think as you said 20 % people in USA has tinnitus, your therapy works on 16% of those, and not on 4% of those who have severe tinnitus. Or rather say you are good in helping those who don't really need severe help.

 

[Dr. Nagler]

We all know you were'nt seriously going to help.
You asked for a statement of the MOA of Retigabine for tinnitus in order for you to write the letter. Well as it happens, that mechanism is unknown, so you withdrew your offer to help.....and if you didn't withdraw then why didn't you submit any letter yet? What are you waiting for may I know?

I wanted the presumed MOA for epilepsy; not for tinnitus. I have it.

And what I was waiting for was the condensed summary of the data from this board. (How many tried it? How many achieved what in their opinion was meaningful relief?) Some two weeks ago I was told that they were very important questions, and I would have the answer within a few days. At some point between then and now, the folks working on the project decided to bypass ATA and go directly to the researchers.

All of this discussion was conducted off the board. Check with @attheedgeofscience if you do not believe me.

You need to settle back down and get a grip on yourself.

Dr. Stephen Nagler

 

[dan]

ok fair enough @Dr. Nagler .

So my next question will address @attheedgeofscience

-Why did you decide to by-pass the ATA? Do your researchers not require extra funding? The ATA did a Campral trial few years ago...

 

[theekarwash]

I'm really not interested in reading people's argumentative debates about attitudes on this thread. Stick to retigabine please.

 

[111]

I'm really not interested in reading people's argumentative debates about attitudes on this thread. Stick to retigabine please.

Not having a go at you karwash, just using your quote to put this thing into context.

In relation to the above quote, lets look at the facts shall we, 100 + pages of general discussion about this stuff, no issues without the Dr joining in, then all of a sudden the Dr joins in and it all goes off topic and pear shaped, and we wonder why.
I have said it before, and I will say it again, he does this on things that aren't discussing the subject matter in which he has a business interest in ( and we know what that is don't we ). Why do you think after he joins in he then says he is leaving the thread after a few of his posts have been replied to, because he gets peoples back up with his posts and his antiquated ideas, he was a member of the ata association remember ( For seven years Dr. Nagler served on the Scientific Advisory Committee of the American Tinnitus Association, and for two years he served as Chairman of ATA's Board of Directors ), and what great things have been achieved by that association, I will give you a postage stamp so you can write the list of achievements on the back of it, and you will still have spare space.

 

[Telis]

Not having a go at you karwash, just using your quote to put this thing into context.

In relation to the above quote, lets look at the facts shall we, 100 + pages of general discussion about this stuff, no issues without the Dr joining in, then all of a sudden the Dr joins in and it all goes off topic and pear shaped, and we wonder why.
I have said it before, and I will say it again, he does this on things that aren't discussing the subject matter in which he has a business interest in ( and we know what that is don't we ). Why do you think after he joins in he then says he is leaving the thread after a few of his posts have been replied to, because he gets peoples back up with his posts and his antiquated ideas, he was a member of the ata association remember ( For seven years Dr. Nagler served on the Scientific Advisory Committee of the American Tinnitus Association, and for two years he served as Chairman of ATA's Board of Directors ), and what great things have been achieved by that association, I will give you a postage stamp so you can write the list of achievements on the back of it, and you will still have spare space.

Well...somebody had to bring some reality to this thread.

 

[attheedgeofscience]

So my next question will address @attheedgeofscience

-Why did you decide to by-pass the ATA? Do your researchers not require extra funding? The ATA did a Campral trial few years ago...

@dan as you can see from the screenshot below, there is a section named "Team Trobalt" which does not appear when you (and other TT-members) log on to TinnitusTalk. The section below is only accessible to the six members of Team Trobalt. And as you can see, the section contains already 39 messages despite only being created 1½ days ago; prior to that we communicated in "endless" PM streams...

If I were to answer your question, we might as well let the hidden Team Trobalt section be visible for all to see. There is a reason why it is hidden. I am generally "pro-sharing" in public (as you know from my impressive volume of posts related to experimental medicine and tinnitus). But sometimes it benefits everyone that things are done "behind-the-scenes". Too much public exposure can damage relations pretty quickly (in some cases).

I should mention that I was behind the Talent Pool initiative and consequent follow-up with alerts being messaged to everyone on TT (both in relation to the Talent Pool itself and the post related to the MoA of Trobalt - a post released within the ATA petition thread; I do not need to share the link, because I know everyone on this board knows what I am talking about as everyone has received the message). The MoA post contained a request for support; only one person (out of 1000 active members; +5000 non-active) stepped forward before Team Trobalt was eventually created (besides Dr. Nagler who had already committed himself to formulating the petition if/when needed). I appreciate the 3 or 4 members who have since stepped forward.

Our group does not have a leader, but I am the "unofficial" spokesperson. There is nothing preventing other members of TT from pursuing their (own) petition group if they wish. I have made the MoA and the statistics we have so far compiled available in public. I have also made updates available on our progress in the ATA petition thread. If you (or others) wish to engage the ATA directly - or any other group, then there is nothing to stop you from doing so.

Team Trobalt consists of unpaid volunteers; we are not medical professionals; we have no financial resources. Despite these modest facts, here is what one member of the research centre we are collaborating with had to say about us:

Definitively you have done very important work in order to gain more knowledge about retigabine for the treatment of tinnitus.

On a final note, thanks to all who have supported TinnitusTalk with data on their treatment progress in relation to tinnitus suppression using off-label prescription of Trobalt.

attheedgeofscience
23/DEC/2014.

 

[Dr. Nagler]

Well...somebody had to bring some reality to this thread.

Reality? Reality is that every coin has two sides. I showed a side of the coin that after some 3500 posts in this thread, nobody had considered. I did it civilly, and I did it respectfully.

Dr. Stephen Nagler

 

[attheedgeofscience]

Reality? Reality is that every coin has two sides. I showed a side of the coin that after some 3500 posts in this thread, nobody had considered. I did it civilly, and I did it respectfully.

Dr. Stephen Nagler

I could be wrong Dr. Nagler, but I think @Telis actually agreed with you...

 

[SoulStation]

Reality? Reality is that every coin has two sides. I showed a side of the coin that after some 3500 posts in this thread, nobody had considered. I did it civilly, and I did it respectfully.

Dr. Stephen Nagler

I second @attheedgeofscience --- I definitely think @Telis was saying that you were brining reality to the thread.

 

[attheedgeofscience]

I wanted the presumed MOA for epilepsy; not for tinnitus. I have it.

Dr. Nagler - not that it matters (or perhaps it does) - but the following is what you requested from me:

If @attheedgeofscience would be kind enough to summarize Regitabine's mechanism of action and the rationale behind its proposed use in tinnitus in two concise sentences, that would be very helpful.

Since the above was in relation to our petition for the ATA, I of course assumed that the MoA you were looking for was an MoA in relation to tinnitus suppression, not epilepsy. The MoA of Trobalt in relation to epilepsy is known.

Some two weeks ago I was told that they were very important questions, and I would have the answer within a few days.

You were indeed (by me) and in public:

Noted, Dr. Nagler.

I have asked the "number cruncher" from the TT-petition group to deliver the figures you specifically request. If anything, the data you require makes it all much easier, I would say. I cannot see any reason why the data should not be available to you soon.

And thanks.

Unfortunately it did not happen due to the lack of support within one of the workstreams. I therefore had to do the work myself which is what was shown later on as statistics in this thread:

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-petition-to-the-ata.6896/page-5#post-82727

I thank you for being willing to formulate the petition had you been provided the data.

We all know you were'nt seriously going to help.

For what it is worth, I have no doubt that Dr. Nagler would have provided the assistance he promised had he been given the data he asked for.

 

[Telis]

Reality? Reality is that every coin has two sides. I showed a side of the coin that after some 3500 posts in this thread, nobody had considered. I did it civilly, and I did it respectfully.

Dr. Stephen Nagler

Yes...reality IS looking at both sides of the coin. Someone needed to show the other side of that coin and I'm glad you did. That was the point to my post.

 

[Dr. Nagler]

Yes...reality IS looking at both sides of the coin. Someone needed to show the other side of that coin and I'm glad you did. That was the point to my post.

I misunderstood your post, and I sincerely apologize.

Dr. Stephen Nagler

 

[tomm]

Am starting a taper down this week. Fingers crossed I don't go back up to 7 or you might see more support posts

 

[Dr. Nagler]

For what it is worth, I have no doubt that Dr. Nagler would have provided the assistance he promised had he been given the data he asked for.

I would have, and I am still willing to do so.

In my opinion Retigabine will ultimately be found to have no pharmacological efficacy whatsoever against tinnitus - but pursuing Retigabine research is important to many in the Tinnitus Talk community, which makes it important to me.

Dr. Stephen Nagler

 

[locoyeti]

In my opinion Retigabine will ultimately be found to have no pharmacological efficacy whatsoever against tinnitus

you say this like you have any knowledge about how this molecule works. i've never seen any posts from you that detail anything about neuroscience. since you have dr. in front of your name, some might be fooled that you actually know more than you do. from what i can tell the main case you have is that because nothing has worked in the past, it is very likely to not work in the future (a logical fallacy). i hold the virtue of epistemic modesty in high regard, i think others should as well.

 

[valeri]

@Lake Girl

In users experience section you wrote that your t was 10/10 before RTG and now is down to 7/10.

Can you please clarify if 7/10 is an average level throughout the day or it's what you experience shortly after taking meds but later it goes up to 10/10?

Thanks!

 

[Dr. Nagler]

you say this like you have any knowledge about how this molecule works. i've never seen any posts from you that detail anything about neuroscience. since you have dr. in front of your name, some might be fooled that you actually know more than you do.

I am a medical doctor, not a neuroscientist. My credentials are available for all on this board to review. My opinion regarding the lack of pharmacological efficacy of Retigabine against tinnitus is not based in neuroscience; it is based in logic. And I have presented the rationale behind that opinion in detail.

Agree or disagree with my opinion. But leave your references to me out of it.

Dr. Stephen Nagler