Retigabine (Trobalt, Potiga) — General Discussion

[RaZaH]

As for Trobalt , I only just started so "No comment " from me on that for the time being.

 

[RaZaH]

@Christian78 I am a bit disappointed in hearing your experience.
I must admit I do not have high hopes for Trobalt being a permanent cure , guess I was still hoping though.
Not entirely sure that I want to go through with this if its only temporary.
Need to think this over...

 

[Christian78]

Im really sorry for that, as we stated many times before: We still cannot affirm anything about if Trobalt is a prermanent cure or not. In my opinion, it very depends on the age of the Tinnitus, being 6-9 months more likely to cure. Or probably, the longer T have been present, the longer 'keep in silence with trobalt' must stay, but there come the problems of taking Trobalt on long - term , so for those maybe would be better to wait for Aut63

I belive, if MPT wouldn't have taken Trobalt, he will still have T.
For sure Trobalt won't cure everybody, specially if the cause is still present

About the side effects, we cannot generlize also: locoyeti, philemon, mpt and some others are doing quite well at 300 TID, danny and me still cannot say but handle 200 very good. As i said its a russian roulette

For everybody, I think it worths to try (im doing it and im very happy about balance of benefits), but I would never stay more than 6 months on this. After 3 years comes the unwanted permanent side effects

I really hope that Aut063 is going to help...

 

[Christian78]

@Christian78 I am a bit disappointed in hearing your experience.
I must admit I do not have high hopes for Trobalt being a permanent cure , guess I was still hoping though.
Not entirely sure that I want to go through with this if its only temporary.
Need to think this over...

It helps as long as you take ti, i meant it kills higher brain function as long as you take it

 

[tomm]

@RaZaH How did your friend get his T that went away?

 

[RaZaH]

Acoustic trauma - noise.

 

[Mal]

@attheedgeofscience I would preferably write you a private message, but I cannot because of your privacy settings, which is also fine. I just want to let you know, that your words have value far beyond the ordinary medical service, and that you have my deep respect.

Thanks a lot,
Mal

 

[SoulStation]

We did it 100 pages!
<------team trobalt

Its time to get f###ed up ! Every one drop 1600 mgs and explode your t out of your skull!

 

[1MW]

Audiogram maybe is a prognostic factor if retigabine works or not.
I don't think the onset time was prognostic factor because when problem in auditory system occurs
tinnitus has immediately onset when the problem solved tinnitus immediately resolves.
Most times chronic tinnitus has a serious cause but this is not absolute.
@Mpt what audiogram have you before/after you take retigabine ?
Also i suggest people to put a screenshot of audiogram in user experiencies.
The tinnitus every second depends in the brain chemistry and auditory temporary thresholds.
I think there is feedback evaluation every moment in auditory system not in large timespaces.
My opinion stuck tinnitus is urban myth stuck problem in auditory system/brain is more likely
that leads to wrong assumption of stuck tinnitus.

Iam on the way to get retigabine for hearing stabilization any suggestion for starting dose / increasing dose
my T has big fluctuation is from 0.5 to 9. Increases with sound exposure decreases with dead silence
and with a lot of sleep.

 

[RaZaH]

This stuff definitely works . I will leave it at that for the time being. Just started.

 

[Juan Carlos]

This stuff definitely works . I will leave it at that for the time being. Just started.

wow some hours ago you totally untrusted Trobalt, Did you have an overdose?

 

[RaZaH]

No..not that I do not trust it , not at all. I simply question whether its worth it if its not permanent , seeing that this stuff does not lend itself to long term use. I also have no experience , it seems to work really good an hour or so after you take it , that might wear off in a couple of hours , no idea yet.

I did not want to say anything seeing how random this T stuff is , but I could not keep my mouth shut.
hehe

 

[lapidus]

Well, we are all rooting for you @RaZaH

 

[Juan Carlos]

No..not that I do not trust it , not at all. I simply question whether its worth it if its not permanent , seeing that this stuff does not lend itself to long term use.

I did not want to say anything seeing how random this T stuff is , but I could not keep my mouth shut.
hehe

We absolutely dont know if will be permanent, but, imagine that finally we discover that its very depending on the Age on the T, saying that T's younger than 10 months are more likely to cure like mtp did.
But well we will be sure of that in 2016/17, if I wait till then my T wont be curable

I just dont wanna risk that,
I started on my 10th month of T I guess the severity also is a factor. My T is mild but I realized it got worse over the year at a slow speed that I almost didn't realize. No reasons to wait

 

[RaZaH]

Well, I am almost on my third year so according to that theory I am way past that.
But all we have are theories so...
I would be super happy if I could just get rid of the central head (physical) buzz.

 

[SoulStation]

We absolutely dont know if will be permanent, but, imagine that finally we discover that its very depending on the Age on the T, saying that T's younger than 10 months are more likely to cure like mtp did.
But well we will be sure of that in 2016/17, if I wait till then my T wont be curable

I just dont wanna risk that,
I started on my 10th month of T I guess the severity also is a factor. My T is mild but I realized it got worse over the year at a slow speed that I almost didn't realize. No reasons to wait

I agree no reason to wait but where did you come up with this "10 month" mark? Mpt had his T for 5 months when he started Potiga ? No offense but it sound's like you're making rules based on your own condition. We have no real permanent personally I don't think we will. I wish we would but I don't think it's going to legitimately happen.

 

[Juan Carlos]

I agree no reason to wait but where did you come up with this "10 month" mark? Mpt had his T for 5 months when he started Potiga ?

Thats just an hypothesis to put by own case as an example of why should i not wait.

For sure there won't be an exact timeline, this is not maths and there are a lot of factors involved, probably more factors than we imagine.
But yeah, i read many times, and quite agreed in the community, people call "chronic case" when its more than 9 months, it does not mean "uncurable", but the statistics say that most of the spontaneus cures happen before 9 months

 

[SoulStation]

Thats just an hypothesis to put by own case as an example of why should i not wait.

For sure there won't be an exact timeline, this is not maths and there are a lot of factors involved, probably more factors than we imagine.
But yeah, i read many times, and quite agreed in the community, people call "chronic case" when its more than 9 months, it does not mean "uncurable", but the statistics say that most of the spontaneus cures happen before 9 months

Could you please show me those statistics? Any scientific papers that say that or is it just speculation? I know that the mechanism of this drug and it's potential on T have scientific papers behind it but that theory of chronicity is based on observation. I've heard different amounts of time, 12 months, 6 months, 9 months, which is it?

 

[RaZaH]

I have mentioned this before but I know of two cases of T stopping , one of them in 3 weeks one of them in 3 years.
Both are friends of mine.
Having said that ..obviously I know of a lot more cases where it did not heal at all.

I should add that I am highly sensitive to drugs , maybe I would have the same relief if I took a benzo ?

 

[Zimichael]

Audiogram maybe is a prognostic factor if retigabine works or not.
I don't think the onset time was prognostic factor because when problem in auditory system occurs
tinnitus has immediately onset when the problem solved tinnitus immediately resolves.
Most times chronic tinnitus has a serious cause but this is not absolute.
@Mpt what audiogram have you before/after you take retigabine ?
Also i suggest people to put a screenshot of audiogram in user experiencies.
The tinnitus every second depends in the brain chemistry and auditory temporary thresholds.
I think there is feedback evaluation every moment in auditory system not in large timespaces.
My opinion stuck tinnitus is urban myth stuck problem in auditory system/brain is more likely
that leads to wrong assumption of stuck tinnitus.

Iam on the way to get retigabine for hearing stabilization any suggestion for starting dose / increasing dose
my T has big fluctuation is from 0.5 to 9. Increases with sound exposure decreases with dead silence
and with a lot of sleep.

Good luck with the audiogram request. Not saying it's a bad idea, just unlikely to happen and I lean more to the "let's do science here" camp.. I sure did not bother to do one again prior to Trobalt as know all too well where my T is at. If it changed, that was all I was interested in at core.

With regard to your question about suggestions for dosing...lots of that info. in the thread. For someone like you who has super variable T volume levels, I almost cannot even understand what that is like let alone that it exists! So will defer to someone else, but do think your chances of "results" may go up if it varies. Mine is solid as a rock - except for the new permanent increases that have happened, well and "legitimate" spikes...car alarms, the idiot factor, etc.

Best, Zimichael

 

[Zimichael]

@Zimichael you really are a gentleman, thanks a lot for your quick and very detailed reply which is a very good summary of our discussion about dosage and homeostasis assumption coupled with very good advises, I really appreciate. I'll still think about it and keep you posted about what i'll do in the next days
All the very best, Philemon

P.S. : "sournois" means something like 'sly' or 'sneaky', i guess it fits with the meaning of 'wiley' ;-) ??

Philemon...yeah, you got it, though I guess "creatively adaptive" would be another way of saying it. I was of course referring to "plasticity", etc. which to me is also just a term that means: "we don't really know what the hell is actually going on, but we know that stuff sort of like we are seeing and postulating is going on". Words to that effect.
And yeah, please keep us updated for sure...at your convenience though.

Take care, Zimichael

 

[Martin69]

We absolutely dont know if will be permanent, but, imagine that finally we discover that its very depending on the Age on the T, saying that T's younger than 10 months are more likely to cure like mtp did.
But well we will be sure of that in 2016/17, if I wait till then my T wont be curable

I just dont wanna risk that,
I started on my 10th month of T I guess the severity also is a factor. My T is mild but I realized it got worse over the year at a slow speed that I almost didn't realize. No reasons to wait

When my T started from 0 to 100 within a second (caused by anxiety/stress), I already knew this will not leave me soon. It was like a binary switch. And it is not mild, but really severe.
I do not know why it should be chronic after 3, 6 or 12 months. It was probably already chronic after 5 minutes.
Tavor (lorazepam) reduced the volume a lot when taking in the beginning.
My opinion: Either there is a drug switching it off again (no matter how long you have it) or it will stay forever.
Lowering the volume would be even very welcome to make habituation easier.
But like everyone here, it is all guessing.

 

[RaZaH]

Come to think of it there is one reason why T could stay after going rampant for years.
It could be like an inverse phantom limb thing? Maybe its the drugs talking.
I´m going to take a nap

 

[john2012]

MPT cured his tinnitus permanently with retigabine. His tinnitus was 6 months old.
If tinnitus is the same whether its 6 months old or 5 years old,
this means retigabine could be a permanent cure for RaZaH...given the right dose.
...hopeful, for all of us.

 

[Telis]

I hope no one thinks this is a cure because one person in the world supposedly got better. That would be a little insane in my opinion.

 

[SoulStation]

I hope no one thinks this is a cure because one person in the world supposedly got better. That would be a little insane in my opinion.

I am with you. Though I think we both can agree it would be great if it was.

 

[Champ]

Guys, here is the deal.

Even if this doesn't "cure" the disease this is a gigantic step forward.

We are starting to build up a body of work with the users here. It seems to be helping in a good number of cases, even if only temporarily. This makes logical sense - we have seen the science extensively posted in this thread about Kv3 & Kv7 potassium gated channels and how they relate to tinnitus. Until now, we have never had human trials for Retigabine on tinnitus - essentially what is happening here is we are experimenting on our own.

This is not science done classically, as we have no control group. Namely, tinnitus patients taking placebo. But logic is a useful tool and it's hard not to make the logical connections here.

Has there been a pharmaceutical drug until now that even gave temporary relief? No, because all of us would've known about it by now. It looks like this might be a 1st of its kind. Autifony would be the "next-gen". All the while, people are working on other avenues of treating the brain along with those who are researching cures to cochlea dysfunction.

We may be on to something here. Do not get discouraged if this does not outright magically make your life better all of a sudden on its own. This has value and is a milestone in my eyes.

 

[OnceUponaTime]

In my humble opinion. almost everyone taking Retigabine have had some kind of significant relief at about 200mg.... So why you keep pushing it? Why not keep it at that dose for a little while... and then taper off slowly. Hopefully the T will stay low. Then restart Retigabine again next month and see if it lowers it even more!? You may avoid all the hard side effects and still get some kind of permanent relief. I'm sorry if I sound stupid... just wishful thinking...hoping something works. All I know is that everytime someone pushes it to 300mg or higher... it seems to stop working....and T comes back at same level. Also, not one woman has tried it yet. I have an appointment tomorrow with my neurologist. Let's see what he says about Retigabine, will let you know. I have T for 3 years. Also, my sister had T for 3 years and it went away just like that. So you never know...... Best of wishes to all that are brave enough to try it.

 

[Champ]

Try it yourself and judge.

I'm willing but wary of the side effects, but that's not what I'm talking about.

The effect it is having on the brain in relation to tinnitus is starting to form a pattern was my point

 

[SoulStation]

Guys, here is the deal.

Even if this doesn't "cure" the disease this is a gigantic step forward.

We are starting to build up a body of work with the users here. It seems to be helping in a good number of cases, even if only temporarily. This makes logical sense - we have seen the science extensively posted in this thread about Kv3 & Kv7 potassium gated channels and how they relate to tinnitus. Until now, we have never had human trials for Retigabine on tinnitus - essentially what is happening here is we are experimenting on our own.

This is not science done classically, as we have no control group. Namely, tinnitus patients taking placebo. But logic is a useful tool and it's hard not to make the logical connections here.

Has there been a pharmaceutical drug until now that even gave temporary relief? No, because all of us would've known about it by now. It looks like this might be a 1st of its kind. Autifony would be the "next-gen". All the while, people are working on other avenues of treating the brain along with those who are researching cures to cochlea dysfunction.

We may be on to something here. Do not get discouraged if this does not outright magically make your life better all of a sudden on its own. This has value and is a milestone in my eyes.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136369/
Many treatments have shown promise.