Retigabine (Trobalt, Potiga) — General Discussion

[Martin69]

This has nothing to do with GSK. It has nothing to do with the FDA. It has nothing to do with lawsuits. It has to do with the fact that individuals on Retigabine specifically for epilepsy who also happen to have tinnitus do not experience unexpected improvement in their tinnitus - or they would tell their doctors, who would be almost as thrilled about it as they are!

Dr. Stephen Nagler

Unfortunately, this makes much sense.

 

[skoupidis]

Perhaps these individuals do not exist. Or do not tell their doctors. Or do tell, but their doctors do not care for the data. Or they do care for the data, it just haven't come out yet.
There is, of course, the possibility that these patinets DO have tinnitus along with epilepsy, and their tinnitus did not get any better.

But all of the above are pure speculations... The only data we do have is coming form the people on this forum who tried Retigabine. How to evaluate this data is, of course, the key to real results. And that is the really difficult part.

The most tricky part is the placebo effect, and of course you cannot rule out any hidden agendas, though I really hope that such things would be kept away from here.

Another point to be taken into account is the fact that Tinnitus most of the times have bad and good days, making It difficult to realize if the medicine helps or not.

I, myself, think that I could tell the difference, if any, but am hesitant to try it, because I too find it difficult to believe that it helps... Logically speaking, we should have more positive results.

 

[xanaxvictim]

Perhaps these individuals do not exist. Or do not tell their doctors. Or do tell, but their doctors do not care for the data. Or they do care for the data, it just haven't come out yet.
There is, of course, the possibility that these patinets DO have tinnitus along with epilepsy, and their tinnitus did not get any better.

But all of the above are pure speculations... The only data we do have is coming form the people on this forum who tried Retigabine. How to evaluate this data is, of course, the key to real results. And that is the really difficult part.

always bear in mind that this is NOT a double blinded placebo controlled trial with rigorous protocol to follow, like the AUT-00063 trial does (which IS a double blinded trial). Even with double blinded placebo controlled trial there is a problem of replicability. Interpretation of clinical trial result is always problematic. Scientifically speaking we cannot say anything for sure using only the existing data set.

 

[Mr. Cartman]

GSK realizes that this drug is offered as a last resort epilepsy drug

This is what the doctor that prescribed me Retigabine said as well, that Retigabine is prescribed for epilepsy patients only when all other drugs has failed.. And when I was going to pick it up at the pharmacy (the biggest pharmacy in Norway) the pharmacist had never heard about this drug, and none of their affiliates had this drug in their pharmacy so they had to order it directly from the norwegian main supplier which turned out to have only 3 boxes of Retigabine available, where I got one of them.

It doesnt seem like theres an aweful lot of people that are prescribed Retigabine to me, even for epilepsy..

 

[EddyLee]

Some of our friends here who tried Retigabine experience changes to their T and the effect can be replicated if they take it again. How could that be placebo!?

 

[attheedgeofscience]

If any of the 4% ... hell, if most anybody in the entire 20%, actually found meaningful tinnitus relief from a herpes pill, the prescribing doctor would get a call from the appreciative patient the very next day.

I think it's a fair point, Dr. Nagler. I also agree with your overall view from another post of yours about the profit side of things (ie. pharmas would love to make more money out of an existing product). And in all honesty, I can also sympathize with your views that you summarize as "mob mentality". Clearly observations taken from Internet users is not very scientific.

But... while you and I would very likely be on the phone with our doctor who prescribed the pill that randomly cured us, I am not so sure that many others would. Here is what I think would happen in a typical situation: yes, the patient would indeed be thrilled about his or her improvement - for sure, but... they would likely not call their doctor the next day, instead they would mention it at the next scheduled visit for renewal of their (epileptic) medication - a renewal that happens to be automated! By automated, I mean you pick up the medication directly at the pharmacy after a call with a nurse at the doctor's office. Perhaps by that time the patient does not mention it; perhaps he/she does, but the nurse processing the prescription does not "bother" to pass on the information because he/she has a room full of patients waiting to be examined or having their blood taken. Who knows, right?

I should also mention that Trobalt is considered a "drug of last resort" in the treatment of epilepsy. You are therefore not likely to find that many epileptics taking it because of the long term side-effects. I will attach a formal letter of warning from GSK itself (it is in German, but I believe you will get the meaning of it - eg. the red-hand symbol at the top of the document).

Of course, there should still be people taking the drug (that would be the counter argument). And so, we should still see at least some patients reporting an improvement in their condition. Right? Right, that is what you would assume to be true. The key word being "assume". We can all sit here typing all day debating theories and possibilities, but all of that is just that: speculation.

Now here are some more reasons why Trobalt might actually have some kind of therapeutic effect which has gone un-noticed:

1) The drug works but... only in specific patients (eg. so-called sub-types of tinnitus).
2) The scientist who has recently shared with us unpublished material about a new compound that would be effective against tinnitus targets the Kv7.2/3 channels (which are part of the full Kv7.2-5 range that Trobalt targets); clearly a professor would not spend his/her time researching something that he/she would deem likely to fail - agree?
3) The following article mentions how Trobalt might be effective in the treatment of tinnitus (http://www.dailymail.co.uk/health/a...TINNITUS-reduces-hyperactivity-cells-ear.html) as does the research paper titled "Pharmacodynamics of potassium channel openers in cultured neuronal networks", released online March 25th, 2014. As with #2, above, I assume these developments and findings did not just happen by chance.

Still, the above is also speculation to some degree. Now, I know how the following sentence is going to sound, but I am afraid there is no other way to (objectively) say it: I have more important things to attend to than write yet another Internet post that at best might be read by 50 to 150 people. Waste of time given some of the activities Team Trobalt is looking into.

attheedgeofscience
21/DEC/2014.

 

[Christian78]

I feel very safe in saying that everybody on this board really wants Regitabine to be pharmacologically effective against tinnitus, but in all their enthusiasm I wonder why nobody has to date brought up the truly compelling evidence against such efficacy.

Dr. Stephen Nagler

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. Why all we try you don't like and you think it is wrong. Or better why do you have to be right. How many people did you cure? Do you have a list of people who would sign and say you saved their life? How many people?

I am really sorry but I feel devastated by every 3rd comment from you. You ... well sometimes i wonder what is better to have you or tinnitus!

Dont be offended, nothing can offend you, so there is no need to apologize. YOu will have dr crner and we will come crawling for help and story repeats.

Have a nice Christmas.

 

[Dr. Nagler]

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.

I didn't give you tinnitus, Christian. Tinnitus is your enemy, not I.

I think this whole Retigabine thing is one big out-of-control freight train, and I explained my reasoning in considerable detail. But you know what? My opinion has absolutely no bearing on whether or not Retigabine actually works. And if my carefully considered opinion happens to be that this whole Retigabine tinnitus phenomenon is one big fantasy, so what? Fairy tales can come true.

Dr. Stephen Nagler

 

[Nick the Swede]

I think it´s very important that we also have some sober and logical inputs in this thread as well.

 

[Dr. Nagler]

@attheedgeofscience -

I am going to address a couple of the points you raised in your post above (#3547 in this marathon), and then leave this thread.

You posted [in part]:

"while you and I would very likely be on the phone with our doctor who prescribed the pill that randomly cured us, I am not so sure that many others would."

............

They might not call their doctors, but you can bet a goodly number of them would get the word out on the Internet or by way of contacting ATA. Even if they had previously been suffering but half as much as I suffered in 94-95, they'd be absolutely screaming from the rooftops for joy! Yet with all those supposed unexpected Retigabine success stories, we have heard not a word.

..............

"I should also mention that Trobalt is considered a "drug of last resort" in the treatment of epilepsy."

................

According to the University of Pittsburgh study referenced earlier in this thread, Retigabine is "a drug often used in the treatment of epilepsy." But let's be very conservative here. Let's say that a mere 1/2 of 1% of epileptics are on Retigabine. That's 15000 in the US alone, 600 of whom also have severe intrusive tinnitus. If only a third of those 600 found an appreciable degree of unexpected tinnitus relief, that would be 200 Retigabine success stories. 200 people jumping for joy and singing the praises of Retigabine from the rooftops. But there isn't a peep. Not one peep!

I could go on and on, but we will settle nothing here. I personally would be absolutely thrilled if Retigabine were even half of what folks on this board want it to be. But I honestly just don't see it.

Here's hoping I'm wrong!

Best to all -

Dr. Stephen Nagler

 

[Christian78]

I didn't give you tinnitus, Christian. Tinnitus is your enemy, not I.

I think this whole Retigabine thing is one big out-of-control freight train, and I explained my reasoning in considerable detail. But you know what? My opinion has absolutely no bearing on whether or not Retigabine actually works. And if my opinion happens to be that this whole Retigabine tinnitus phenomenon is one big fantasy, so what? Fairy tales can come true.

Dr. Stephen Nagler

You see you are negative!

you say: My opinion has absolutely no bearing and then you become negative on the end: And if my opinion happens to be that this whole Retigabine tinnitus phenomenon is one big fantasy...

you could have said, maybe it works, lets give it a try people, evidence say it does not. let prove it helps a little, maybe 3 months and then stop and again, ask neurologist for best way to use it and that is it.

i hope i am wrong.

 

[EddyLee]

My opinion has absolutely no bearing on whether or not Retigabine actually works.
Dr. Stephen Nagler

Very much agree. In fact, i would believe the opinion of those who have tried Retigabine than someone who have never try it.

 

[111]

I am going to address a couple of the points you raised in your post above (#3547 in this marathon), and then leave this thread.

As per usual, he comes on, tries to dispel any idea of something assisting people, other than the business he has an interest in of course, then leaves the thread, he does it all the time.

 

[Christian78]

Very much agree. In fact, i would believe the opinion of those who have tried Retigabine than someone who have never try it.

Well here is my opinion about retigabine...

i tried, i did not felt much until 600 mg/d, and it was fine for 30 days, then t started to be annoying and i went to 750 mg/d, it became annoying and i went to 900 mg/d. But there side effects were too hard. As time passed medicine had heavier and heavier impact on me. I had to lower to 250+300+300 or less. T was rising above until taking trobalt ment taking placebo. There were moments when i took a pill and it made me like high or drugged so i could not pay attention on tinnitus. I must say my t become worse and I decided to go down and try to wash it put. Reason for it was not just no effect on tinnitus, I say it here now. I had constant blackouts, i check my blood pressure and it was 105/70, my urine became almost red, and worst of all I mage typing mistakes but problem became when i could not fill formular in bank, i could not write my name, and sign it. And yes I went to 250, side effect went away most of it, still when i take pill it like hits me, but few hours later i can write, think, walk, my tinnitus is here, it is not monster 7-8/10. I did not had sensitivity, all lest not in that messure on some sound, some tiny white noise that now i have and it raises my tinnitus high. I dont know why I have it, maybe it is trobalt withdraw, maybe it was done by trobalt, maybe it will go away... maybe... few days on lover dosage and i discover i have got H, 400% up that I had before.

I chose to take Trobalt. For me it worked, but as longer i took it brain became more and more saturated by it, 4 months is long period. We see how will other do. Maybe and kinda I AM SURE brain must go of it because with time it get oversaturated.

What do you think... And yes trobalt is very addictive!

 

[rtwombly]

Dr. Stephen Nagler

Just doing a quote because I haven't been able to do a @ with your name for some reason, doctor.

I've now had personal experience with Potiga 300mg TID and I can tell you without a doubt that the efficacy against tinnitus is not a placebo effect. I consider myself more suited to make this grandiose pronouncement because of the particulars of my tinnitus experience. Please bear with me through this explanation because I'm going to turn it around a bit and give you some due credit near the end.

My case of tinnitus is idiopathic in origin and, before Potiga, almost entirely unilateral to the right ear. In the past 11 months I had two or three occasions when my tinnitus moved for some hours or minutes to the left ear and as many occasions of near silence on waking, those lasting a few minutes. Since starting Potiga at 100mg TID I believe I have had an overall reduction in tinnitus volume. At 150/200/250mg TID I had the same level of reduction, which wasn't exactly what I was hoping for, so I don't think my reduction was placebo. But I freely admit it could have been, especially in the context of my experience at 300mg TID.

At 300mg TID I have experienced mood enhancements, which other patients have described as being slightly high, and I'd describe as a mild manic episode, having heard these described in detail by bipolar people. Since this medicine has such an effect, I could accept that the general perception of lower tinnitus could be a result of feeling good. However, since starting 300mg, I have had several experiences I cannot dismiss. A few of these have been brief periods of near silence, but far more often, I have experienced my right ear tinnitus going completely away while another sound, localized to the top of my head, becomes more noticeable.

This is a night-and-day, black-and-white perception for me. I go from unilateral, right ear tinnitus, with either a high-pitched whining or low-frequency distant fog horn sound (before Potiga the sounds used to coexist and compete, with Potiga I mostly hear one or the other for extended periods) to central/off-center low-frequency tinnitus. Takes about an hour, sometimes longer, after my dosage. It doesn't always happen, but has happened more and more frequently as I have stayed at this dose.

So it works. Unquestionably Potiga/Trobalt/retigabine/ezogabine affects tinnitus loudness and/or annoyance. What it doesn't do is work the same way in all patients. In Mpt it didn't cause any side effects, shut his tinnitus completely off, and effected a homeostatic adaptation. In Christian it turned him into a scatterbrained zombie (I say this with love and admiration), but a scatterbrained zombie with lower tinnitus loudness and annoyance. In at least two of our members it affected their kidneys and they had to stop.

It's a crap shoot medicine. That's why we haven't heard of neurologists turning cartwheels in the aisles. I'm sure some have seen people benefit. I'm thoroughly convinced that Dr. Large's interest in tinnitus at all and potassium modulators in particular had to do with experiences of his patients during his clinical evaluation of retigabine a couple of years ago. I have no idea why Dr Thanos Tzounopoulos thought this epilepsy drug might be effective as a preventative agent, but clearly he had at least a hypothetical rationale. The problem is, this is a dangerous medicine. It's highly unpleasant for some people and downright toxic in others. And nobody can tell you up front what category you are likely to be in. But seemingly, you have to roll snake eyes to get a cure and anything else is at least a somewhat bad experience.

Here's the kudos part, doctor. One thing I've noticed while on this drug is that I've occasionally lost track of my tinnitus. When I've noticed, it's been there. Afterward, it's been less annoying. In other words, having Potiga in my system exposed me to the joys of habituation. That too exists, friends and neighbors. You can actually get to the point where your tinnitus doesn't ruin your enjoyment of life. I'd done a bit of that before Potiga, but definitely more since. Tinnitus is also definitely in the brain. Maybe it starts in the ear, but it persists in the brain. It's also very complicated. It can be one sound or many, which indicates to me that a pharmaceutical cure for everybody is a very high bar to reach. So, basically, all the stuff Dr Nagler has tried to tell us about this condition, so far as I understand it, is right. It's only the approach, or the value/wisdom of vesting our hopes in an off-label medicine, that we're fighting over here.

Hopefully the next few months will make this conversation irrelevant. In the meantime I wish everybody in this community peace and harmony.

 

[undecided]

...but problem became when i could not fill formular in bank, i could not write my name, and sign it...

Lol, that happened to me, forgot my cc PIN number when trying to buy some stuff, another time I forgot my social security number which I had not forgotten once in the past 25 years.

 

[dan]

But let's be very conservative here. Let's say that a mere 1/2 of 1% of epileptics are on Retigabine. That's 15000 in the US alone, 600 of whom also have severe intrusive tinnitus. If only a third of those 600 found an appreciable degree of unexpected tinnitus relief, that would be 200 Retigabine success stories.

Lets say you do a coin toss bet with one of your friends. Winner will be declared out of 6 coin tosses.
Heads or tails doc ? Lets say you choose heads every time - because you are reasoning that you have a 50-50% chance to win every time. But every coin toss you lost! How can that be - according to your belief you should have won 3 times! But, 50% chance of winning is still no guarantee you will win half the time.
Also, your statement that if 4 % of the USA population has severe T then 4% of the Epilepsy population must have severe T is not accurate - but another assumption.
So your 200 severe tinnitus with epilepsy sufferer figure could of become just 50 people. Now 5 of those people wrote to the ATA (who didn't do a damn).
There are just too many variables dear doctor.

 

[SoulStation]

Once again, I think we all need to settle down. This is starting to get so hypothetical and I don't think it's helping our cause. We have a whole team of people trying to make this medication more available and we are trying to find out if it holds as a positive treatment. I think time will tell and as we all know, we can't force time to move.

 

[Philemon]

Fair enough.

Let's first look at the "evidence" in favor of Retigabine's purported pharmacological efficacy against tinnitus generated on this board. We have a cadre of individuals who are truly suffering from tinnitus and are seeking relief. So these folks manage to find a source for Retigabine (no easy task in many cases) and take the drug specifically in the hopes that they will at long last achieve an appreciable degree of relief. And a fair percentage do report improvement in their tinnitus rating, which basically is their own subjective measure of their own subjective symptom. Please bear in mind that this is an improvement they were specifically looking for and hoping to achieve. There is no randomization. There are no controls. Now we all know that tinnitus is a subjective condition and as such cannot be directly measured, but even so we do not even have a reliable set of before and after tinnitus pitch and loudness matches. What we have is totally subjective data regarding a totally subjective condition, data generated from a group of very highly motivated individuals looking for (and hoping for) any suggestion of improvement. In another post I referred to it as quite likely the result of a combination of placebo effect, coincidence, desperation, wishful thinking, and mob mentality. Nevertheless, many here refer to the above circumstance as evidence. Is it evidence? It might be, but for now I choose to look at it as data points and nothing more. Especially in view of the compelling evidence against efficacy that I am about to describe.

OK. Let's for now take Retigabine completely out of the equation. Just for now. Instead, let's talk about herpes.

Approximately 20% of the population of the US has tinnitus, but the vast majority of those are for one reason or another not significantly affected by it. Maybe because it's not loud. Maybe because it occurs only sporadically. Maybe because they have fantastic coping skills. Maybe because they have habituated it. Whatever. Still and all they'd rather not have it. I know I would! But 20% of the 20% (i.e., approximately 4% of the population of the US) have severe tinnitus. And for whatever reason their lives are markedly disrupted by it. They truly suffer in every sense of the word. Maybe because it is so loud. Maybe because it is so relentless. Maybe because ... well, why am I telling you? This board is absolutely loaded with people who have severe tinnitus. This board is loaded with people who suffer. This board is loaded with people whose lives to a greater or lesser degree revolve around their tinnitus. The composition of this board is reflective of what that 4% of the US population experiences every day of their lives. And if one day - for whatever reason - your tinnitus improved by 50%, you would recognize that blessed state of affairs immediately. Right?

Acyclovir (Zovirax) is a commonly prescribed anti-herpes medication with absolutely no known pharmacological activity against tinnitus. Millions of people have been prescribed Zovirax for cold sores, genital herpes, shingles, and chickenpox. Many take it chronically to decrease the frequency of recurrent herpes outbreaks. Of course 4% of individuals on Zovirax have severe intrusive tinnitus, and another 16% have tinnitus that is not particularly severe - just like in the general population. Now if my own doctor put me on Zovirax for herpes and within a week or two my tinnitus (which has been screaming now for more than 20 years) settled down to an appreciable degree, I would be on the phone with him thanking him not for what the medication did for my herpes, but rather for the totally unexpected effect it apparently had on my tinnitus. And so would anybody else in my shoes. If any of the 4% ... hell, if most anybody in the entire 20%, actually found meaningful tinnitus relief from a herpes pill, the prescribing doctor would get a call from the appreciative patient the very next day. Not only that, if only 50% of tinnitus sufferers found appreciable unexpected tinnitus relief while on Zovirax, word would get around pretty quickly in the medical community that finally we have a pill that truly shows promise against tinnitus. There would be case report after case report. We wouldn't have to beg our internists, family doctors, and ENTs for off-label prescriptions of Zovirax ... because they would be expecting our calls and would willingly prescribe it. The stock of the company that manufacturers the drug would soar. And the whole story would of course be all over the Internet.

The operative word in the above paragraph is unexpected.

Back to Retigabine ...

Some three million Americans have epilepsy, most of whom are on medication and a goodly number of whom since 2011 have been on Retigabine, if only as a trial. So where are all the case reports of unexpected tinnitus relief from those epileptics on Retigabine who happen also to have tinnitus - severe or otherwise? Sure, we have the hardly unbiased Tinnitus Talk data from those who took the drug specifically looking for relief - but where are the hundreds of case reports we should have by now from those epileptics on Retigabine who also suffer from tinnitus and who finally found their long-sought-after tinnitus relief unexpectedly while on the drug. I do not know of hundreds of cases. I do not know of dozens of cases. Indeed I do not know of even one. And that is what I consider to be convincing evidence at this point in time - the lack of phone calls to prescribing physicians from those who unexpectedly found relief and the lack of the case reports that those phone calls would surely generate.

Now let me make it clear where I stand on the issue of off-label prescribing of Retigabine. Even though I feel strongly that ultimately a properly done study will fail to show pharmacological efficacy (just like with Campral and all the other supposed silver bullets), I would have trouble saying no to a patient of mine who asked for it - if for no other reason that I personally know what it is like to be in the bottom of that snake-infested pit where many tinnitus sufferers dwell day in and day out. Some physicians may not understand tinnitus suffering - perhaps most do not understand tinnitus suffering - but I surely do.

There are, however, mitigating factors in my situation. First of all, I see only 40 patients a year and do not prescribe any medications for any reason whatsoever. If I did, I would have to take call (which at the age of 66 is no longer on my radar), and my malpractice insurance rates (which are predicated on my not prescribing any medications) would more than double.

The original question from @john2012 had to do with whether or not I would be willing to prescribe Retigabine off-label to a patient of mine who asked for it. In view of what I wrote in the above paragraph, I would be willing to discuss it in detail with my patient's own primary care physician and (in spite of my opinion that any "effect" is not pharmacological) argue in favor of it purely on a compassionate basis, but I would not prescribe it myself.

Dr. Stephen Nagler

@Dr. Nagler with all due respect you may be wrong about your numbers regarding the likelihood of an epileptic person suffering of tinnitus and simply be prescribed retigabine , just check @benryu post about it :

https://www.tinnitustalk.com/thread...-—-general-discussion.5074/page-13#post-57795

 

[dan]

Agreed.
And a quote from Viking in that tread:
"My neurologist, who has nearly 40 years of experience, he has never prescribed [Trobalt]."

I think we made our point very clear.

 

[Christian78]

Just doing a quote because I haven't been able to do a @ with your name for some reason, doctor.

I've now had personal experience with Potiga 300mg TID and I can tell you without a doubt that the efficacy against tinnitus is not a placebo effect. I consider myself more suited to make this grandiose pronouncement because of the particulars of my tinnitus experience. Please bear with me through this explanation because I'm going to turn it around a bit and give you some due credit near the end.

My case of tinnitus is idiopathic in origin and, before Potiga, almost entirely unilateral to the right ear. In the past 11 months I had two or three occasions when my tinnitus moved for some hours or minutes to the left ear and as many occasions of near silence on waking, those lasting a few minutes. Since starting Potiga at 100mg TID I believe I have had an overall reduction in tinnitus volume. At 150/200/250mg TID I had the same level of reduction, which wasn't exactly what I was hoping for, so I don't think my reduction was placebo. But I freely admit it could have been, especially in the context of my experience at 300mg TID.

At 300mg TID I have experienced mood enhancements, which other patients have described as being slightly high, and I'd describe as a mild manic episode, having heard these described in detail by bipolar people. Since this medicine has such an effect, I could accept that the general perception of lower tinnitus could be a result of feeling good. However, since starting 300mg, I have had several experiences I cannot dismiss. A few of these have been brief periods of near silence, but far more often, I have experienced my right ear tinnitus going completely away while another sound, localized to the top of my head, becomes more noticeable.

This is a night-and-day, black-and-white perception for me. I go from unilateral, right ear tinnitus, with either a high-pitched whining or low-frequency distant fog horn sound (before Potiga the sounds used to coexist and compete, with Potiga I mostly hear one or the other for extended periods) to central/off-center low-frequency tinnitus. Takes about an hour, sometimes longer, after my dosage. It doesn't always happen, but has happened more and more frequently as I have stayed at this dose.

So it works. Unquestionably Potiga/Trobalt/retigabine/ezogabine affects tinnitus loudness and/or annoyance. What it doesn't do is work the same way in all patients. In Mpt it didn't cause any side effects, shut his tinnitus completely off, and effected a homeostatic adaptation. In Christian it turned him into a scatterbrained zombie (I say this with love and admiration), but a scatterbrained zombie with lower tinnitus loudness and annoyance. In at least two of our members it affected their kidneys and they had to stop.

It's a crap shoot medicine. That's why we haven't heard of neurologists turning cartwheels in the aisles. I'm sure some have seen people benefit. I'm thoroughly convinced that Dr. Large's interest in tinnitus at all and potassium modulators in particular had to do with experiences of his patients during his clinical evaluation of retigabine a couple of years ago. I have no idea why Dr Thanos Tzounopoulos thought this epilepsy drug might be effective as a preventative agent, but clearly he had at least a hypothetical rationale. The problem is, this is a dangerous medicine. It's highly unpleasant for some people and downright toxic in others. And nobody can tell you up front what category you are likely to be in. But seemingly, you have to roll snake eyes to get a cure and anything else is at least a somewhat bad experience.

Here's the kudos part, doctor. One thing I've noticed while on this drug is that I've occasionally lost track of my tinnitus. When I've noticed, it's been there. Afterward, it's been less annoying. In other words, having Potiga in my system exposed me to the joys of habituation. That too exists, friends and neighbors. You can actually get to the point where your tinnitus doesn't ruin your enjoyment of life. I'd done a bit of that before Potiga, but definitely more since. Tinnitus is also definitely in the brain. Maybe it starts in the ear, but it persists in the brain. It's also very complicated. It can be one sound or many, which indicates to me that a pharmaceutical cure for everybody is a very high bar to reach. So, basically, all the stuff Dr Nagler has tried to tell us about this condition, so far as I understand it, is right. It's only the approach, or the value/wisdom of vesting our hopes in an off-label medicine, that we're fighting over here.

Hopefully the next few months will make this conversation irrelevant. In the meantime I wish everybody in this community peace and harmony.

I am going down with trobalt. after 4 mohts i dont have effect on him. MY tinnitus i have feeling is higher but H is definitely higher. Wait 4-5 months untilk you get brain saturated and when you start t go down you will see...

 

[RichL]

Some three million Americans have epilepsy, most of whom are on medication and a goodly number of whom since 2011 have been on Retigabine, if only as a trial.

Some figures on how many are on Retigabine and actually have intrusive Tinnitus would help your argument immensely!

 

[dan]

- or they would tell their doctors, who would be almost as thrilled about it as they are!

Right, but then these doctor's hands are tied when it comes to prescribing it to T patients - obviously because the FDA's and to some extent GSK's black labeling this drug. Do you expect these doctors to run to the FDA petitioning for an ON-label tinnitus indication? I doubt it. But I'm sure they are thrilled about their patient success.

 

[Zimichael]

A few comments before I tune out after a very long weekend. Ummmmm..."short posts"!!! Therefore blunt.

~ Only an idiot would take Retigabine in some starry-eyed belief that it's a wonder drug and is going to cure their tinnitus without some potential heavy duty side effects. So, assuming most of our trialees have read enough of the thread to be as sacred witless of potential bad things happening as good things happening, does this mean that the bad effects reported are placebos too then??? Or only the good parts, where tinnitus changes???
I absolutely know I have the capacity to know if I am having a placebo effect or not. I absolutely know my increased H on Trobalt was not a placebo. I absolutely would have known if my T had changed...I think I can honour that most of our trialees would know that too.

~ @amandine ...You have your Keppra reports. You do not have the simple Keppra report you requested. As Mick Jagger sang so long ago: "You don't always get what you want".... SEE KEPPRA THREAD.

So trialees, or potential trialees - question thee not whether ye placebo or not to placebo...just fill in the darn User Report forms with whatever the hell happens! After all the whole planet is just one big Imagination in consciousness is it not. Maybe we, and this whole road show are all God's placebo!

I think it's time to go to sleep... Zimichael

 

[inadmin]

I am willing to bet that the number of 20% having tinnitus is skewed. I believe that the number is way lower. And so is the number of patients who would report relief after using troblat.

 

[TomKA]

As some of you maybe read I started Trobalt on Saturday with my first dose of 100mg at 16:00 and second one at midnight before going to bed.

Unfortunately my T freaked out after maybe 30 min. of first dose, then got some better after 3-4 hours, and again the same after the second dose. Same on morning and so on.
I suspended after morning dose to take a rest and find out if it goes back to baseline.
Night vom Sunday to Monday was better - but my T is still higher. Maybe only to my anxiety, who knows.

It was not only a up in volume but all tones changed a bit - I have most of the time a dominat whooshing (correct in English?) sound in my head/righ ear - this changed to more pure tone sounds.
Maybe this is what let me freak out because I find pure tone (high frequency) more annoying than a whooshing.
The tones are somewhat "clearer" in my head.

Did anyone of acutal/former RTG users has experienced something like this at start?

I expected NO effect or an improvement on start, not this :-(

 

[EddyLee]

Sorry to hear about that but on the positive side it also means your T still can be change and that Trobalt has effect on your T. Other treatment like AM101 also reportedly made T worse initially and eventually gets better and better than baseline after some time.

Though, i would not continue to experiment with Trobalt if it makes my T worsen. It's just not worth the risk, IMO, better wait for something like Autifony's.

 

[rtwombly]

As some of you maybe read I started Trobalt on Saturday with my first dose of 100mg at 16:00 and second one at midnight before going to bed.

Unfortunately my T freaked out after maybe 30 min. of first dose, then got some better after 3-4 hours, and again the same after the second dose. Same on morning and so on.
I suspended after morning dose to take a rest and find out if it goes back to baseline.
Night vom Sunday to Monday was better - but my T is still higher. Maybe only to my anxiety, who knows.

It was not only a up in volume but all tones changed a bit - I have most of the time a dominat whooshing (correct in English?) sound in my head/righ ear - this changed to more pure tone sounds.
Maybe this is what let me freak out because I find pure tone (high frequency) more annoying than a whooshing.
The tones are somewhat "clearer" in my head.

Did anyone of acutal/former RTG users has experienced something like this at start?

I expected NO effect or an improvement on start, not this :-(

Sounds like an event I had one morning at 300mg TID (900mg total), but mine went away within and didn't repeat. Have you tried cuddling with your wife? That helped me. Maybe it only works with my wife.

Seriously, tomKA, I hope it settles down for you. The change in tone sounds very much like my experience, but it was a change in tone and a decrease in volume, so very nice. Hopefully if you are able to continue it will settle into something like that.

 

[tomm]

Sounds like an event I had one morning at 300mg TID (900mg total), but mine went away within and didn't repeat. Have you tried cuddling with your wife? That helped me. Maybe it only works with my wife.

Seriously, tomKA, I hope it settles down for you. The change in tone sounds very much like my experience, but it was a change in tone and a decrease in volume, so very nice. Hopefully if you are able to continue it will settle into something like that.

My GP has been uncooperative and I have not been granted a prescription for your wife. There are apparently some websites where you can import one from China or Russia. Will start a new thread.

I get spikes after dosing that last about 30 mins before it settles btw.

 

[Juan Carlos]

As some of you maybe read I started Trobalt on Saturday with my first dose of 100mg at 16:00 and second one at midnight before going to bed.

Unfortunately my T freaked out after maybe 30 min. of first dose, then got some better after 3-4 hours, and again the same after the second dose. Same on morning and so on.
I suspended after morning dose to take a rest and find out if it goes back to baseline.
Night vom Sunday to Monday was better - but my T is still higher. Maybe only to my anxiety, who knows.

It was not only a up in volume but all tones changed a bit - I have most of the time a dominat whooshing (correct in English?) sound in my head/righ ear - this changed to more pure tone sounds.
Maybe this is what let me freak out because I find pure tone (high frequency) more annoying than a whooshing.
The tones are somewhat "clearer" in my head.

Did anyone of acutal/former RTG users has experienced something like this at start?

I expected NO effect or an improvement on start, not this :-(

yeah also got that, kind of spike before settle down, it always goes away after 5 minutes and after the settle down is for sure better than before the dose, you are not the only one and i dont think there is a reason to worry. I see it as a first brain reaction like T fighting to RTG and finally the "surrender".

About the tone, most of us have this "clearer" tone with RTG. The fact that a pure tone annoys you more than a less pure doesnt mean that its worse, in fact, im pretty sure, the cleaned tone is way "closer" to the cure than the noisy one. This allows us to see wich is our pure T frequency as is "cleaned", and also help us to know the origin of our T.
For example in my case, whem Im very high on RTG, i can hear only a pure tone in my Right ear. Before RTG i could never imagine that my T could come from an acoustic trauma on my right ear. On that moment, on my left ear i hear complete silence

If you think about it, hearing a pure tone is very logical as RTG makes a general sound reduction, so the frequencies near your T-tone had low volume before RTG, after RTG dose the low volume becomes zero-volume, and the loud volume of your main T-Frequency becomes a normal or low volume and thats all you can hear. If you are not used to hear a pure tone maybe it scares you more than the before noise but belive me that is way closer to the silence