Retigabine (Trobalt, Potiga) — General Discussion

[valeri]

@Dr. Nagler

Sure you can have your opinion but it is really possible that nearly all of the people on this board who tried RTG had "imaginary" volume reduction?
I'm not going into permanency or side effects at this point though.
How would official medicine explain the results we've seen so far?

I know that when my t goes down it's got nothing to do with perception, when it's down it's down

 

[Zimichael]

Reality is what we Perceive...Perception is our Reality.
So even if Retigabine was a total fake-out and worked to lower a significant number of people's T...who the hell cares???!!! If this is backed up in further "studies" (which we are trying to get to) and T is improved...who the hell cares if it is just perception, placebo, or pink pajamas???
Funny thing is, that on TT forum there have been lots of "good sounding" ideas, drugs, methods, noise-makers, perception changers, whiz-bangs, elecro-zim-zams, whatever....Yet if they do not work, aka. perceived by our members to not work, aka nothing much happened to anyone's T....we eviscerate them!!!

Trobalt is getting enough results to generate 121 pages...You think that is all from 'smoke'?????? Pa-lease!!! Does not seem like evisceration to me. Something must be happening!

Let's move on from the generator of "Fight Club"...the movie was much better. Instead, if anyone wants some useful advice I would remind Trobalt takers to avoid alcohol while taking it. Or expect some interesting perceptions around your heart function!

Keep those User Reports coming in. Zimichael

 

[dan]

@attheedgeofscience
Well you don't want to answer my question about ATA, but that's Ok.
I just figured they could help fund it, but I figure you don't want their help and you have your reasons. About You-know-who's help, I'm actually so very glad you didn't need it and I have my own good reasons for my opinion. I happen to know him much better than you do. Good luck Team Trobalt.
Edit: I just noticed that @Zimichael is on Team Trobalt - well I feel better already
(I mean that in a good way) Hi Michael!

 

[PhilB]

So even if Retigabine was a total fake-out and worked to lower a significant number of people's T...who the hell cares???!!! If this is backed up in further "studies" (which we are trying to get to) and T is improved...who the hell cares if it is just perception, placebo, or pink pajamas???

I disagree. Over the last 120 pages of this thread and also in the Retigabine - User Experiences thread, the trialees have described the effects of this drug in considerable detail and with as much objectivity as they have been able to bring to the task. While this endeavour does not come anywhere near meeting the recognised standards of best practice for clinical research, it is an impressive effort from a group of volunteers spread all over the globe, some of whom have very limited resources and have needed to overcome many difficult obstacles in order to even obtain this drug. Dr. Nagler has dismissed all this as the work of self-deluded people who have succumbed to a mob mentality. In doing so, I think he does the trialees a disservice and I think he under-estimates the intelligence of other contributors. I do not believe that so many seemingly intelligent people would be so keen to delude themselves.

The point of all this testimony on user-experiences is to produce a body of evidence which demonstrates that Retigabine has an effect upon Tinnitus. I don't think there are many amongst us who believe Retigabine to be the answer to all our prayers but I do believe that the trialees have accumulated compelling evidence that Retigabine has an effect upon T. The reason why this is crucially important is because if it can be proven that Retigabine affects T then it provides the medical research community with a new challenge. The challenge will be to develop new drugs which affect the voltage-gated potassium channels relevant to the auditory system in such a way as to reduce tinnitus but without producing the undesirable side-effects associated with Retigabine. In particular, the concerns about retinal pigmentation change should not be under-estimated. Even if there were no other reported side-effects, that alone would make Retigabine unsuitable for long-term use. Many people are hoping that AUT00063 will be the first step towards targetting voltage-gated potassium channels in a more specific way which affects those channels which produce T but without slurred speech, blurred vision, cognitive impairment and all the other issues which make Retigabine problematic.

I do not question Dr. Nagler's good will and integrity. In some senses, this forum has always been divided into two camps with little interest in each other's ideas. Without intending to be flippant, these camps can be summarised as the "magic-pill" camp and the "change-must-come-from-within" camp. Dr. Nagler is an advocate of psychological approaches to treatment of T and these approaches should not be lightly dismissed. They have an important role to play. However, in the debate on Retigabine, I believe that Dr Nagler will be left looking like those in the scientific community who laughed at Gallileo and continued to insist that the sun revolved around the earth.

 

[attheedgeofscience]

Edit: I just noticed that @Zimichael is on Team Trobalt - well I feel better already

Team Trobalt is: @Markku @Steve @Zimichael @Mark McDill @jazz @attheedgeofscience

@attheedgeofscience
Well you don't want to answer my question about ATA, but that's Ok.

It's not public information as explained already in my earlier post:

https://www.tinnitustalk.com/thread...—-general-discussion.5074/page-120#post-84840

 

[RichL]

Well as far as opinions from both sides go, I for one, welcome good healthy debate as long as people present facts and not mere opinions masquerading as facts.

The Retigabine trialees are presenting facts from real experiences, the nah Sayers are presenting opinions not based on anything but made up anecdotes and IMO biased attitudes!

Their is no balance to be bought into this, at the end of the trial, it either work's or it doesn't! period!

Rich

 

[Juan Carlos]

Forgot some effects on my last report about hightime (cannot edit it):

• Im definetely nicer to people who i talk with, to everybody. 20 minutes ago coming back to work saw a person i know, he was on motorbike, normally i dont know if i would stop him, maybe yes, but called his name loud so he can hear me and we talked for a while (I took 200mg 1h before)
  
• Im more exposed to say 'yes' to whatever question some one ask you, like asking a favor or making a party in your apartment wich you will regret
• Im more exposed to make stupid and funny comments on facebook to any state or photo even of someone wich you normally dont comment
• You have thoughts that normally dont have (in a good way), for example, today lot of people in the street because of xmas, though of how many stories and conversation happening at the same time, how many things happen at the same second, that is an amazing thing wich i would think of probably. Those are thoughts wich are always good and i like to have, RTG totally opens your mind and thinking, I like it in any way

 

[Markku]

Forgot some effects on my last report about hightime (cannot edit it):

• Im definetely nicer to people who i talk with, to everybody. 20 minutes ago coming back to work saw a person i know, he was on motorbike, normally i dont know if i would stop him, maybe yes, but called his name loud so he can hear me and we talked for a while (I took 200mg 1h before)
  
• Im more exposed to say 'yes' to whatever question some one ask you, like asking a favor or making a party in your apartment wich you will regret
• Im more exposed to make stupid and funny comments on facebook to any state or photo even of someone wich you normally dont comment
• You have thoughts that normally dont have (in a good way), for example, today lot of people in the street because of xmas, though of how many stories and conversation happening at the same time, how many things happen at the same second, that is an amazing thing wich i would think of probably. Those are thoughts wich are always good and i like to have, RTG totally opens your mind and thinking, I like it in any way

Thank you. I've added it.

 

[undecided]

@Juan Carlos

are you sure you bought RTG and not cocaine?

(lol, only joking, hope you get even more improvement!)

 

[Dr. Nagler]

Well as far as opinions from both sides go, I for one, welcome good healthy debate as long as people present facts and not mere opinions masquerading as facts.

The Retigabine trialees are presenting facts from real experiences, the nah Sayers are presenting opinions not based on anything but made up anecdotes and IMO biased attitudes!

I cannot speak for anybody else in this thread, but I have stressed over and over that my views on Retigabine are opinions. I have given the basis for those opinions. And I have stated on a number of occasions that I hope my opinions are ultimately proved to be wrong. If there is a masquerade going on, I am not a part of it.

Now here is a fact: Tinnitus is a subjective phenomenon. What that means is that the only reality in tinnitus (besides how miserable it can make you feel) is how you perceive it. In other words, in tinnitus what you perceive is what it is. And that being the case, there is simply no way a tinnitus sufferer can determine that a change in tinnitus volume is based on an actual change or a perceived change - because they are one and the same thing. The closest one can come is to compare before and after tinnitus loudness matches in dB performed in a controlled setting in an audiology booth. And to the best of my knowledge none of the folks on Tinnitus Talk reporting results have done that. (Incidentally, we do that sort of thing all the time in my clinic for people with markedly fluctuating tinnitus. We perform a loudness match on a very soft day and again on a very loud day. On a soft day the patient might rate the tinnitus a 2 out of 10, while on a loud day the patient might rate it a 9 - but to the patient's great amazement the loudness match in dB measured in an audiology booth on those two days remains remarkable constant. These are folks who are absolutely convinced that their tinnitus is actually changing, when what is really changing is how they perceive it!)

A last comment. I never said that taking Retigabine has no effect on tinnitus. It is quite apparent from the experience on this board that it does. What I have said is that in my opinion taking Retigabine has no pharmacological effect on tinnitus. It will require a properly controlled and blinded study to make that determination one way or the other.

I wonder why that fact that one person's opinion might disagree with the opinion of others in this thread is so distressing to so many. Could it possibly be that those who feel that Retigabine does indeed have pharmacological efficacy against tinnitus aren't so sure about it after all??!! Why else be so upset about a single voice outside the curve!

Christmas is upon us with the dawn of a new year to follow closely. Be kind to each other. I will keep a good thought for all of you.

Dr. Stephen Nagler

 

[xanaxvictim]

Bad news. Can't get my neurologist prescribe RTG he read all the pre-clinical studies I presented to him but he told me he's reluctant to prescribe it because there's no clinical data to support the use of RTG. He didn't even prescribe me Tegratol. He told me "I'm sorry there's nothing I can do for you."
I remember someone got RTG from a chemical producer in China?
p.s. The neurologist doesn't seem to be aware of recent consensus that T is generated in the brain. He kept mentioning voltage problem in the Cochlea. Anyone can tell me what clinic offers better diagnosis and evidence-based treatment options?
btw he did mention benzo and he said that it is a really nasty and addictive drug which he won't prescribe easily.

 

[amandine]

@xanaxvictim

you can buy the trobalt powder from china.
in this thread below please find 111 comment on it. Maybe you could pm him and get further details.
He tested it for quality against the pills and found the powder and pills to be equal.
hope this helps you

https://www.tinnitustalk.com/thread...—-general-discussion.5074/page-101#post-80096

 

[lapidus]

@NGC891

I'm confused by your progress report. In the last one you said this:

"- I now know that I have never had hyperacusis before starting Trobalt. I am now particularly bothered by the noise of plates and cutlery. This new hyperacusis linked undoubtedly to Trobalt is stable."

But in the one from Nov 14 you said this:
"Today, the hearing activity appears slowed. Sensation of tinnitus less present but also a sensation of lower sensitivity to sound."

I thought you had H and it got better from Trobalt but now you say that you don't had it and you have gotten H from Trobalt? Could you please elaborate on this?

 

[Juan Carlos]

@NGC891

I'm confused by your progress report. In the last one you said this:

"- I now know that I have never had hyperacusis before starting Trobalt. I am now particularly bothered by the noise of plates and cutlery. This new hyperacusis linked undoubtedly to Trobalt is stable."

But in the one from Nov 14 you said this:
"Today, the hearing activity appears slowed. Sensation of tinnitus less present but also a sensation of lower sensitivity to sound."

I thought you had H and it got better from Trobalt but now you say that you don't had it and you have gotten H from Trobalt? Could you please elaborate on this?

Agree.
Also @NGC891 , I dont understand how can you rate on 6/10 when you have "days with no or rather with little tinnitus"

 

[Zimichael]

I disagree. Over the last 120 pages of this thread and also in the Retigabine - User Experiences thread, the trialees have described the effects of this drug in considerable detail and with as much objectivity as they have been able to bring to the task. While this endeavour does not come anywhere near meeting the recognised standards of best practice for clinical research, it is an impressive effort from a group of volunteers spread all over the globe, some of whom have very limited resources and have needed to overcome many difficult obstacles in order to even obtain this drug. Dr. Nagler has dismissed all this as the work of self-deluded people who have succumbed to a mob mentality. In doing so, I think he does the trialees a disservice and I think he under-estimates the intelligence of other contributors. I do not believe that so many seemingly intelligent people would be so keen to delude themselves.

The point of all this testimony on user-experiences is to produce a body of evidence which demonstrates that Retigabine has an effect upon Tinnitus. I don't think there are many amongst us who believe Retigabine to be the answer to all our prayers but I do believe that the trialees have accumulated compelling evidence that Retigabine has an effect upon T. The reason why this is crucially important is because if it can be proven that Retigabine affects T then it provides the medical research community with a new challenge. The challenge will be to develop new drugs which affect the voltage-gated potassium channels relevant to the auditory system in such a way as to reduce tinnitus but without producing the undesirable side-effects associated with Retigabine. In particular, the concerns about retinal pigmentation change should not be under-estimated. Even if there were no other reported side-effects, that alone would make Retigabine unsuitable for long-term use. Many people are hoping that AUT00063 will be the first step towards targetting voltage-gated potassium channels in a more specific way which affects those channels which produce T but without slurred speech, blurred vision, cognitive impairment and all the other issues which make Retigabine problematic.

I do not question Dr. Nagler's good will and integrity. In some senses, this forum has always been divided into two camps with little interest in each other's ideas. Without intending to be flippant, these camps can be summarised as the "magic-pill" camp and the "change-must-come-from-within" camp. Dr. Nagler is an advocate of psychological approaches to treatment of T and these approaches should not be lightly dismissed. They have an important role to play. However, in the debate on Retigabine, I believe that Dr Nagler will be left looking like those in the scientific community who laughed at Gallileo and continued to insist that the sun revolved around the earth.

PhilB...I fully agree with your well presented summary above. Thank you! My only differences in viewpoint would be some aspects of the last paragraph.

Please just put some of my comments down to pure frustration with an ever recurring phenomenon on TT where threads "blow up", not because of healthy debate or differing viewpoints - as we do that all the time. It is the how it's done part. Some people do it better than others despite how well they think they are doing it. In true scientific manner, you could statistically assess that by just doing a meta analysis of TT threads in the last 6 months say, and see how many "acrimonious dogfights" occur with whom, by whom, and whether any useful function came out of it to serve the overall TT community. My opinion on that is clear.

I would prefer to stick to the 'personal facts' presented here in this thread by trialees, no matter if they are actual physiological, or perceived reality. We are basically trying to assess a potential pharmacological approach to tinnitus relief - or even cure down the road. Our somewhat novice, but brave trial has all kinds of well known "scientific limitations". Hell, if we had the big $$$ and support of the mainstream Tinnitus organizations, we probably could be doing a much more "acceptable" and controlled version.
But this is all we have got for now...It needs nurturing and indeed critique. Again, it is how the latter is done that deems whether it is helpful or not. If it just causes acrimony, maybe it would be best to ......... and stick to the gazillion other threads, needs and ways to help on TT as a whole.

Best, Zimichael

 

[Mal]

My T varies all the time like crazy , through the day , through the week, month etc.
Had silence yesterday , going nuts today.
I could donate my brain to be used as a true random number generator.

LOL. At least your number generator produces an int between 1 and 100. Mine seems to be broken and cannot produce numbers under 50

 

[Philemon]

Now here is a fact: Tinnitus is a subjective phenomenon.

I thought there is nowadays plenty of objective measurements of tinnitus (from brain imagery for example) used by scientists/researchers ... maybe they're wrong using it ?? am just asking/wondering ...

The closest one can come is to compare before and after tinnitus loudness matches in dB performed in a controlled setting in an audiology booth. And to the best of my knowledge none of the folks on Tinnitus Talk reporting results have done that. (Incidentally, we do that sort of thing all the time in my clinic for people with markedly fluctuating tinnitus. We perform a loudness match on a very soft day and again on a very loud day. On a soft day the patient might rate the tinnitus a 2 out of 10, while on a loud day the patient might rate it a 9 - but to the patient's great amazement the loudness match in dB measured in an audiology booth on those two days remains remarkable constant. These are folks who are absolutely convinced that their tinnitus is actually changing, when what is really changing is how they perceive it!

oh and i haven't done the audiology booth experiment since i'm on trobalt but i can swear that the same very faint noise (for example my macbook in my silent office) is now 80 percent covering my T most of the time while it's was ABSOLUTELY NEVER the case a bit more than one month ago ! just saying ...

 

[Dr. Nagler]

I thought there is nowadays plenty of objective measurements of tinnitus (from brain imagery for example) used by scientists/researchers ... maybe they're wrong using it ?? am just asking/wondering ...

You raise a very important point. Thank you for doing so.

To the best of my knowledge, which is admittedly limited in the area of neuroscience research, brain imaging can sometimes show changes in tinnitus, but whether those changes represent the (elusive) tinnitus generator or whether they represent the brain's response to the perception of tinnitus has to date never been clearly worked out.

For instance, we learned way back in 1998 from the studies by Lockwood and Salvi that in patients who can control their own tinnitus using various oculo-facial maneuvers there are limbic system findings that are present when tinnitus is "on" but absent when tinnitus is "off." But whether those findings represent the brain's emotional reaction to the presence of tinnitus or whether they represent the tinnitus itself has never been clear.

There is no question but that there are objectively measurable imaging findings associated with tinnitus. It will be most interesting to see whether or not those findings change upon administration of Retigabine. I would only add that for the fellow whose tinnitus disappears upon taking Retigabine, that person will be thrilled regardless of what his imaging studies show ... and I will be thrilled for him!

Dr. Stephen Nagler

 

[Philemon]

You raise a very important point. Thank you for doing so.

To the best of my knowledge, which is admittedly limited in the area of neuroscience research, brain imaging can sometimes show changes in tinnitus, but whether those changes represent the (elusive) tinnitus generator or whether they represent the brain's response to the perception of tinnitus has to date never been clearly worked out.

For instance, we learned way back in 1998 from the studies by Lockwood and Salvi that in patients who can control their own tinnitus using various oculo-facial maneuvers that there are limbic system findings present when tinnitus is "on" but absent when tinnitus is "off." But whether those findings represent the brain's emotional reaction to the presence of tinnitus or whether they represent the tinnitus itself has never been clear.

There is no question but that there are objectively measurable imaging findings associated with tinnitus. It will be most interesting to see whether or not those findings change upon administration of Retigabine. I would only add that for the fellow whose tinnitus disappears upon taking Retigabine, that person will be thrilled regardless of what his imaging studies show ... and I will be thrilled for him!

Dr. Stephen Nagler

Thanks for this very clear and informative answer

 

[Dr. Nagler]

Thanks for this very clear and informative answer

You are welcome.

None of this is easy ... for any of us.

Best wishes to you and yours for a Merry Christmas and a healthy and happy 2015.

Dr. Stephen Nagler

 

[Philemon]

You are welcome.

None of this is easy ... for any of us.

Best wishes to you and yours for a Merry Christmas and a healthy and happy 2015.

Dr. Stephen Nagler

Thanks, wish the same for you

 

[Christian78]

@NGC891

I'm confused by your progress report. In the last one you said this:

"- I now know that I have never had hyperacusis before starting Trobalt. I am now particularly bothered by the noise of plates and cutlery. This new hyperacusis linked undoubtedly to Trobalt is stable."

But in the one from Nov 14 you said this:
"Today, the hearing activity appears slowed. Sensation of tinnitus less present but also a sensation of lower sensitivity to sound."

I thought you had H and it got better from Trobalt but now you say that you don't had it and you have gotten H from Trobalt? Could you please elaborate on this?

I definitely got very strong H from trobalt, I did not had it, i did not mind being by computer, now i pay attention to all kind of sounds, i can hardly listen to radio, and those sounds seem so loud + they irritate me i have reactive t, so my t goes up when i hear those noises. I hope my H will diminish as i diminish trobalt

 

[Christian78]

when i read few lines i wonder now, because I have reactive tinnitus, maybe I have not become tolerant to Trobalt but Trobalt course Hyperacusis and my tinnitus reacted on it and that is what i thought is making tinnitus come out but it was hyperacusis irritating tinnitus... could this possible?

Could it be possible that when i got more and more tinnitus under same dosage of trobalt that it was actualy hiperacusis forcing a tinnitus. On last good days on trobalt i notices that ventilator on laptop computer makes my life terible... but now when i came home, sound from heaters, cooking things all make it terble, even radio i used to listen on computer i must turn off and be in silence

 

[NGC891]

@NGC891
I'm confused by your progress report. In the last one you said this:
"- I now know that I have never had hyperacusis before starting Trobalt. I am now particularly bothered by the noise of plates and cutlery. This new hyperacusis linked undoubtedly to Trobalt is stable."
But in the one from Nov 14 you said this:
"Today, the hearing activity appears slowed. Sensation of tinnitus less present but also a sensation of lower sensitivity to sound."
I thought you had H and it got better from Trobalt but now you say that you don't had it and you have gotten H from Trobalt? Could you please elaborate on this?

I only report my impressions that have evolved since I started taking Trobalt.
At the beginning of treatment, I felt with 150mg TID that the sounds were more muffled. I then continued and increasing to 200mg TID. It was worse for my tinnitus. So I decided to go down to 150mg TID that gave me interesting results then I went up to 200mg TID.
I have for many years reactive tinnitus, ie a noise exposure strengthens significantly. However, I did not hyperacusis before starting Trobalt. For last days, the sounds of the dishes are particularly unpleasant to me. They resonate in my head. I hope my explanation is understandable.
@Zimichael And @Christian78 have also felt H whith Trobalt.

 

[NGC891]

Agree.
Also @NGC891 , I dont understand how can you rate on 6/10 when you have "days with no or rather with little tinnitus"

This is an average over the last 8 days.

 

[Christian78]

Agree.
Also @NGC891 , I dont understand how can you rate on 6/10 when you have "days with no or rather with little tinnitus"

I must say your text sent some tears on my eyes... i felt the same as you, i looked my parrots, and birds, and colors of the fall, i have thousand of hugs. Only if the trobalt does not that expiry date on tinnitus, i lasted 4 months, and what i seen from all starters i passed that all, and increase of dosage. Pitty is only hyperacusis becomes stronger after stopping trobalt. Also my lowering of trobalt create short qi hear interval or you well know it better than me so my blood pressure crushed from 120 to 85, mostly 95-100 for now, it has tendency to fall. I been and left my blood test, more over all side effects are wearing off even that i am now on 250 mg, and should go to 200mg...

All those emotion i had, and i helped so many elderly people on and off buss that they told me i am definitely not a sweden, they never do it, they just not want to intervene..

If Gods has a mercy and i get off trobalt and start again, and we all get some positive results for autifony it would be great, and then we can give new tack to dr large to create happy drug so we all be kind to each other and stop meaningless war and religion, and openly love each other.... we have such potential and it is strange that one drug unlocks it!

Somehow to smuggle some retigabine in Siria? put in the water? what you think don juan?

 

[Lake Girl]

@valeri
I will try to answer your question as best I can.
Before starting potiga, my T would decide what it would do each AM. Some days would start out as a 5/10 or a 7/10 or a 10/10. However it started is how it would stay all day, only to change after a night of sleep.
Now I have many fluctuations through out the day. One hour might be 5/10 and the next may be 7/10. I do have a noticeable spike about 30 minutes after dosage and then it will go silent or almost silent for about an hour or so. Then it creeps back up slowly or quickly until the next dose.
The pitch or tone of my T is also different. It is higher pitch now. Sometimes it sounds like a noise across the room instead of in my head.
One thing is for sure. After suffering with this beast for the last 18 months, I can say WITHOUT A DOUBT, something is different. No placebo effect with me. What I am experiencing with potiga is way better then the way I was before. Only time will tell if the improvements will last or get even better. And as of yet, no bothersome side effects.

PS...sorry but I can't figure out how to insert your question into my reply. If someone could PM me with tips on how to do this from my iPhone I would be grateful!

 

[Christian78]

Dear my friends I came to understanding of irony,we use a trobalt but The One who is here with us who hates it needs it the most...

And I believe this medicine is very important, but not only for us. A person who is here daily opposing all effect of same medicine, The You-Know-Who, he should probably benefit the most from 3 months dosage of Trobalt. I believe it would active compassion and open his heart to a positive energy, not cold negative logic.

Who would know that Trobalt can help The One who is opposing him the most. Dear You-Know-Who, take a trobalt 3 months you will become a special someone, if you dont have money I suppose we can collect it somehow.

 

[valeri]

@Lake Girl

Thank you for your reply!
Since starting RTG does your t ever go to 10/10?

 

[Lake Girl]

@valeri
Sometimes it will spike to 10/10. But it does not last long.