Retigabine (Trobalt, Potiga) — General Discussion

[Dr. Nagler]

Will you give Autifony's drug a try when that comes out and is tested and on the market?

I'm not exactly sure how we got from ...

I am just a little envious of MPT because he is totally cured

to

Will I try a drug once it receives FDA approval that does not offer anything close to resembling a cure to somebody like me who has had tinnitus for more than twenty years

Danny Boy, it's not even on my radar.

My friend, you view the world through the prism of your intrusive tinnitus. I understand that; I've been there myself. But thanks to TRT, I view the world as a person who merely happens to have tinnitus. To me the difference is like night and day.

By the way, Danny Boy, one other thing while I have your attention. In an earlier post you referred to my "TRT business" and the impact that a true cure for tinnitus might have on that business. Are you aware of the fact that 100% of the profits from my TRT business are donated to research towards a true cure for tinnitus? I draw $1 per year in salary. That's it. So if I had to shut down my TRT business because somebody came up with that cure, nothing would make me happier.

All good wishes to you for health, happiness, and silence in the coming year.

Dr. Stephen Nagler

 

[Danny Boy]

I'm not exactly sure how we got from ...

I am just a little envious of MPT because he is totally cured

to

Will I try a drug once it receives FDA approval that does not offer anything close to resembling a cure to somebody like me who has had tinnitus for more than twenty years

Danny Boy, it's not even on my radar.

My friend, you view the world through the prism of your intrusive tinnitus. I understand that; I've been there myself. But thanks to TRT I view the world as a person who merely happens to have tinnitus. To me the difference is like night and day.

By the way, Danny Boy, one other thing while I have your attention. In an earlier post you referred to my "TRT business" and the impact that a true cure for tinnitus might have on that business. Are you aware of the fact that 100% of the profits from my TRT business are donated to research towards a true cure for tinnitus? I draw $1 per year in salary. That's it. So if I had to shut down my TRT business because somebody came up with that cure, nothing would make me happier.

All good wishes to you for health, happiness, and silence in the coming year.

Dr. Stephen Nagler

Ok Dr. Nagler and no, I didn't know that, that's most generous of you! I must admit, TRT failed for me, because maskers and white noise interfered with my H...

 

[PhilB]

Will I try a drug once it receives FDA approval that does not offer anything close to resembling a cure to somebody like me who has had tinnitus for more than twenty years

@Dr. Nagler - I just wonder what is the basis for your assertion that AUT00063 is unlikely to be helpful to someone such as yourself who has had tinnitus for a long time. I expect you are aware that AUT00063 is currently in Phase 2a Clinical Trial and even though Autifony seem to have high hopes for the drug (along with many members of this forum who are taking a close interest in the trial), nothing is known at this stage about its efficacy. As far as I'm aware, there is no particular reason to think that it might be effective for acute T but not chronic T. We simply do not know. I realise that this is a Retigabine thread so I apologise for the off-topic post.

 

[Dr. Nagler]

Ok Dr. Nagler and no, I didn't know that, that's most generous of you! I must admit, TRT failed for me, because maskers and white noise interfered with my H...

We are getting way off-topic here, but perhaps TRT failed for you because your TRT clinician was not knowledgeable and experienced enough to tailor it to your needs. I'm not saying that's necessarily the case, but there is no credentialing in TRT ... and there's an awful lot of bad TRT out there.

Now let's get back to Retigabine.

Dr. Stephen Nagler

 

[Dr. Nagler]

@Dr. Nagler - I just wonder what is the basis for your assertion that AUT00063 is unlikely to be helpful to someone such as yourself who has had tinnitus for a long time.

That is my current understanding, but I may be mistaken.

My point is that these decisions are highly individualized and personal. If tomorrow I were offered a 100% cure with absolutely no inconvenience or risks of any kind, of course I'd take it. But if the treatment were not a 100% cure and/or if there were risks, then I'd have to weigh the pros and cons.

That's a totally different answer than how I would have responded in 1994, when I'd have gladly cut off my right arm for relief, even if it were not a true cure.

Dr. Stephen Nagler

 

[lapidus]

To @Dr. Nagler and everybody who is having a debate with him regarding Retigabine and whatnot.

Just a friendly reminder (I don't wanna be rude).
There is already a thread that our dear doctor created regarding this issue here:
https://www.tinnitustalk.com/threads/on-retigabine.6042/

Please take your discussion there instead of clogging up this thread with off topic discussions regarding Nagler's view on Retigabine (and other medical treatments for T).

Happy Holidays to all!

 

[Dr. Nagler]

Please take your discussion there instead of clogging up this thread with off topic discussions regarding Nagler's view on Retigabine (and other medical treatments for T).

Thanks lapidus. But in any event I have said all I intend to say on the subject - here in this thread or anywhere else. My opinion on Retigabine is well-known and well-documented as is the rationale behind that opinion. The fact that it is not a very popular opinion is understandable, but it is what it is. I hope that the fact that I am genuinely pleased whenever any tinnitus sufferer finds an appreciable degree of meaningful relief regardless of how that relief is attained does not get lost in all the back-and-forth. So, too, I hope I have made it clear that I would be very happy to be wrong about Retigabine.

Best to all -

Dr. Stephen Nagler

 

[Martin69]

Guys it's kills/gals it's killed my tinnitus! it's now a one!

Danny, be careful. Don't take too much.

 

[skoupidis]

So, I admit to not having read through the entire topic. Apart from the author, has anybody else been almost cured? Danny boy seems close enough...

 

[john2012]

If I were in your shoes I'd go this drug a try, at the very least. The only issue is, getting this drug...It's harder to obtain than street drugs, heroin etc...So that's the task you'd need to overcome first.

Agreed. My doctor in UK is unsure about helping me. Are you able to share with us where you got your trobalt from? A lot of people here would try it if only they could get it, for sure. Thanks for any help you might be able to give us.

 

[amandine]

@john2012
you can get the powder from china
ask @111 where to get it maybe in a private message
he tested the powder against the pills in a laboratory and both are the same

 

[1MW]

I can't find easy the retigabine where can i get this powder of retigabine ?
One chinese from alibaba want 1200$ for 100g more expensive than trobalt
but can give me without prescriptions/collisions.Also quality is chinese so there is a risk.
Do you know some valuable seller to buy in good price whithout prescriptions and collisions ?

 

[Telis]

If I were in your shoes I'd go this drug a try, at the very least. The only issue is, getting this drug...It's harder to obtain than street drugs, heroin etc...So that's the task you'd need to overcome first. And Mine doesn't go to 3-10, mine was stable and really annoying, plus I had H...I know this drug works as my H is practically gone and my tinnitus is far lower. This drug has saved my life and trust me, if it keeps my H away when I'm not on this drug, then I don't care about my tinnitus, H was far worse. And mine wasn't maskable, now it is. Good luck on your journey mate and I wish you well.

How was your T stable? You posted in another thread that chocolate increased your T by 50%!!

 

[Albertus]

I just read the progress report Cristian78 and is very discouraging. It is not the first time that writes loss reporting bad results that has given Trobalt and here it seems that people only cares about good results and omit the opinion of who was one of the veterans in trying Trobalt . It's a risk we're taking everyone and no one would like to end like this . Right now the score is 1-1. A win (Mtp) and a defeat (Cristian). I feel for you mate . Lot of strength and encouragement.

 

[Christian78]

I just read the progress report Cristian78 and is very discouraging. It is not the first time that writes loss reporting bad results that has given Trobalt and here it seems that people only cares about good results and omit the opinion of who was one of the veterans in trying Trobalt . It's a risk we're taking everyone and no one would like to end like this . Right now the score is 1-1. A win (Mtp) and a defeat (Cristian). I feel for you mate . Lot of strength and encouragement.

Never give up.

I fight. I will wash out and try again, everyone i hear got same symptoms like me, and if you use constant same dosage min 10 days you can get effect on trobalt, single dosage gives a kick only.

I think trobal kick me down my t a little, so i can tolerate it now, before trobalt i could not stay but i smile now even with this tinnitus off toromalt , only H is sensitive.

Story is not finished. Retigabine is not cure for tinnitus but it helps, the only medicine non addictive that has effect on tinnitus that i have seen.

bottle is going on...

 

[Danny Boy]

How was your T stable? You posted in another thread that chocolate increased your T by 50%!!

Yeah, stable aside from chocolate. I can happily say that trobalt ensures I don't have spikes, even when having chocolate.

 

[Danny Boy]

@Mpt were you taking any supplements alongside or anything else? Would like to know, cheers.

 

[Christian78]

Does anyone get stronger tinnitus on sound of that small hum of 20db from ventilator or hot water running trough pipes.

@Markku it would be nice IF you COULD change progress forum and add how long time people are on retigabine, make just a small calculator who recalculates total time on trobalt. It seems longer we are less effective retigabine is, after 4 months is loses effect 80%, not only on me 2 other person have those effects.

Please if you could add how long time people are on RTG (trobalt/potiga)

I wonder but do i have hyperacusis, I can listen to sounds that irritate me, they don't create pain but what happens is that after a minute listening this sounds (and now i really have a lot of tham, almost cant use kitchen any more), so i listen sound 1 minute and my is up 10%. I have no pain except t that went up? Those who has hyperacusis what do they think?

 

[Snake Plissken]

Jesus H Christ the hate the doctor is getting for not wanting to take a drug to treat a symptom for which it has no proven benefit. These anecdotal reports are optimistic but that's all they are. If retigabine is shown to reduce tinnitus symptoms significantly with no considerable side effects in a peer-reviewed, double-blinded clinical trial then sure I'll take it. But I'm with Dr. Nagler on this one.

 

[Zimichael]

Soo happy for you. To me a few hours of peace will be nice. I will start my pills on Monday the 23rd. I have a few things to do and some guests coming over for dinner tomorrow and Sunday is the Firehouse Christmas party and we wont miss it! After that I can slow down and maybe this will be a Christmas gift for me. One thing I must say, I was happy to see how small the pill is...I can actually swallow a small pill like that. I usually have trouble with big pills... Happy day to all.

@OnceUponaTime ...as one of our "rare species" of female trialees, could you please fill in a new user form and initial progress form too if any notes to make. Thanks!

I take my hat off to you for trying this drug if you can go to a Firehouse Christmas party...Just the thought of that is enough to make me quake in fear! Though to be fair, the last I was at was in 2102 at my friend's farm in Bavaria where the annual volunteer Feuerwher (literally = "fire defense") folks had their 3 day bash right next door. Golly I have never seen so much beer consumed and of course much jumping around, shouting, music, etc.
Sigh! Those were the days...but I still had to use low key earplugs to be amongst that lot! Maybe they are quieter in NY! Hope you had a good time, and that the Trobalt treats you kindly.

Best, Zimichael

 

[Zimichael]

So for people who have been following the Kv discussion, were considering Trobalt but have been afraid of it, perhaps Keppra is a really good alternative to consider!!!

Hey, I figured I would link this over to the Retigabine thread in case a number of you have not been following the Keppra thread; have some faith in the "Kv modulators for T"; are scared witless by Trobalt;....and can't get it anyway!

Maybe worth a look. Best, Zimichael

 

[john2012]

Never give up.

I fight. I will wash out and try again, everyone i hear got same symptoms like me, and if you use constant same dosage min 10 days you can get effect on trobalt, single dosage gives a kick only.

I think trobal kick me down my t a little, so i can tolerate it now, before trobalt i could not stay but i smile now even with this tinnitus off toromalt , only H is sensitive.

Story is not finished. Retigabine is not cure for tinnitus but it helps, the only medicine non addictive that has effect on tinnitus that i have seen.

bottle is going on...

Maybe we can now see Christian's experience as a SUCCESS story.

 

[Christian78]

Thank you.

http://www.ncbi.nlm.nih.gov/pubmed/23650395

What does this mean in text: Importantly, reduction of phosphatidylinositol 4,5-bisphosphate (PIP2) causes KCNQ3 to become sensitive to ZnPy but lose sensitivity to retigabine. The dynamic shift of pharmacological selectivity caused by PIP2 may be induced orthogonally by voltage-sensitive phosphatase, or conversely, abolished by mutating a PIP2 site within the S4-S5 linker of KCNQ3.

Can enionge google and find anything about developing tolerance on retigabine?

 

[Christian78]

@john2012
you can get the powder from china
ask @111 where to get it maybe in a private message
he tested the powder against the pills in a laboratory and both are the same

Is it possible to test such complex chemical substance is house laboratory?

ethyl N-[2-amino-4-[(4-fluorophenyl)methylamino]phenyl]carbamate

http://en.wikipedia.org/wiki/Retigabine#mediaviewer/File:Retigabine3DanJ.gif

 

[theekarwash]

Still on 50mg once a day. T is still at a 2/3-10.

 

[xanaxvictim]

Thank you.

http://www.ncbi.nlm.nih.gov/pubmed/23650395

What does this mean in text: Importantly, reduction of phosphatidylinositol 4,5-bisphosphate (PIP2) causes KCNQ3 to become sensitive to ZnPy but lose sensitivity to retigabine. The dynamic shift of pharmacological selectivity caused by PIP2 may be induced orthogonally by voltage-sensitive phosphatase, or conversely, abolished by mutating a PIP2 site within the S4-S5 linker of KCNQ3.

Can enionge google and find anything about developing tolerance on retigabine?

ZnPy is a very commonly used chemical unfortunately it doesn't cross BBB so the only way to get it to the brain is injection into the spine, not practical in any way. Another method is develop another molecule which has a similar MoA on the receptor but cross BBB, which can be a monumental undertaking.
Most CNS medicine have tolerance problem

Meanwhile my brain T is going out of control, it and the accompanying intense pain is sawing, tearing, exploding my brain apart. The sensation is impossible to mask and driving me crazy. Who say T gets better and less noticeable over time?

 

[Viking]

Hoping not to be misunderstood I would share with you a thought about drugs in general: too often in my clinical experience / patient I saw doctors give high-dose medicines when maybe it was necessary the minimum dosage but for a long time more. Sometimes the time (which is always a gentleman) is better than many moore "milligrams". In many cultures in the world, people take triple doses of aspirin to treat fever. Well, they certainly will lower their body temperature quickly, but if there is a virus in the body, they will give a chance to the viral infection of doing more damage than just a fever...returning on Trobalt...probably we not need the full dosage of 900mg because we are not epileptic. Probably would have been enough 300mg or 150... All medicines have an individual response. We are not all equal. Even the weight and height can make a difference .... and metabolism. I hope not to be crucified for this thought.
Best wishes

 

[Christian78]

Hoping not to be misunderstood I would share with you a thought about drugs in general: too often in my clinical experience / patient I saw doctors give high-dose medicines when maybe it was necessary the minimum dosage but for a long time more. Sometimes the time (which is always a gentleman) is better than many moore "milligrams". In many cultures in the world, people take triple doses of aspirin to treat fever. Well, they certainly will lower their body temperature quickly, but if there is a virus in the body, they will give a chance to the viral infection of doing more damage than just a fever...returning on Trobalt...probably we not need the full dosage of 900mg because we are not epileptic. Probably would have been enough 300mg or 150... All medicines have an individual response. We are not all equal. Even the weight and height can make a difference .... and metabolism. I hope not to be crucified for this thought.
Best wishes

ON 100 i had only bit high, but on 200 i had firs effect, after 20 days...

 

[1MW]

ZnPy is a very commonly used chemical unfortunately it doesn't cross BBB so the only way to get it to the brain is injection into the spine, not practical in any way. Another method is develop another molecule which has a similar MoA on the receptor but cross BBB, which can be a monumental undertaking.
Most CNS medicine have tolerance problem

Meanwhile my brain T is going out of control, it and the accompanying intense pain is sawing, tearing, exploding my brain apart. The sensation is impossible to mask and driving me crazy. Who say T gets better and less noticeable over time?

Just a question if you return to low doses xanax your T stops / improves ?
If yes then you must build a protocol to withdraw slowly from benzos.
I say that because cold turkey can make permanent problems.
It's better to stop benzos slowlyyy and perhaps with help from another drug.
Sudden stopping benzos can freak you non only in T but H panic attacks severe insomnia photophobia headaches etc.

 

[Karl28]

How can I get Retigabine ?