Retigabine (Trobalt, Potiga) — General Discussion

[gintas]

thank you papu !

 

[Onnie]

@RaZaH

I did a quick search:

http://www.ncbi.nlm.nih.gov/pubmed/21951272

I think this article actually states the opposite? (not sure if that is helpful though..)

I also found this book:

Ion Channel Drug Discovery

edited by Brian Cox, Martin Gosling

There are some previews on google books. I looked through it and it seems an interesting read (to me), and at least it's written in an understandable manner.

 

[papu]

@Onnie you are absolutely right they are taking about using stuff like retigabine *actually mention in article to open those cjannels and prevent hearing loss:

"the voltage-gated potassium channel KCNQ4 (Kv7.4). KCNQ4 mediates the predominant K(+) conductance, I(K,n) , of auditory outer hair cells (OHCs), and loss of KCNQ4 function leads to degeneration of OHCs resulting in progressive hearing loss. Here we explore the possible recovery of channel activity of mutant KCNQ4 induced by synthetic KCNQ channel openers."

"Various known KCNQ channel openers robustly enhanced KCNQ4 currents. The strongest potentiation was observed with a combination of zinc pyrithione plus retigabine."

"Our data suggest that by stabilizing the KCNQ4-mediated conductance in OHCs, chemical channel openers can protect against OHC degeneration and progression of hearing loss in DFNA2"

 

[papu]

"Moreover, a form of dominant deafness arises from impaired function of KCNQ4
(Kharkovets et al., 2000), so nonspecific opening of these channels may have unwanted side effects on hearing"

@RaZaH
@linearb
They are actually trying to restore those channels with retigabine in person that have that mutation DFNA2 so actually is the opposite as proposed by your statement. They are using trobalt to open those channel and stop the progressive hearing loss for that type of mutation.

 

[papu]

zinc pyrithione plus retigabine

Maybe someone should try that its say as I understand it that augments the effect of retigabine in k ion channels, from what is stated in the article. Maybe combined to lower the trobalt dosage but still get same effect. @Danny Boy you are our official guinea pig, what do you think? Are you in?

 

[Onnie]

He has no hearing loss as i recall?

Also, i read somewhere else (link provided below) that the deficiency in this channel is genetic. It causes deafness that runs in families. Not sure if this is to be compared to other sorts of hearing loss.

http://www.wikigenes.org/e/gene/e/9132.html

Not sure if this source is reliable. I am having trouble interpreting all this stuff since English is (obviously) not my first language.

 

[papu]

Wow zinc pyrithione is use in shampoo for dandruff so @Danny Boy its time to drink some shampoo UP !!!!! lol, may i suggest head and shoulders mate.

 

[Bart]

Has anyone had permanent worsening of t while trying to tapper down or upon stoping?

Had your t returned to previous levels or it's still louder than before Trobalt?

@valeri

Yes it did return to the previous levels after a week.

 

[Danny Boy]

Wow zinc pyrithione is use in shampoo for dandruff so @Danny Boy its time to drink some shampoo UP !!!!! lol, may i suggest head and shoulders mate.

What the!?

 

[papu]

What the!?

Just joking my friend. =)

 

[Danny Boy]

Just joking my friend. =)

I know lol. Still I've used zinc and trobalt, doesn't make a difference. Can you get that specific zinc in pills, or is it just for use in cosmetics?

 

[papu]

@Danny Boy I think is a special kind of zinc bonded and probably not sold as such but it's not the everyday zinc like the one you get in a supplement

 

[RaZaH]

@Bart you say it returned to previous levels after a week , how long was your trobalt trial ?

 

[Danny Boy]

@Danny Boy I think is a special kind of zinc bonded and probably not sold as such but it's not the everyday zinc like the one you get in a supplement

Hm, so not possible to obtain then? Where's that head and shoulders...

 

[OnceUponaTime]

Hm, so not possible to obtain then? Where's that head and shoulders...

Oh my gosh @Danny Boy !! I know you would!..LOL

 

[Danny Boy]

Oh my gosh @Danny Boy !! I know you would!..LOL

Haha. That's the cure, head and shoulders! Get rid of the ringing and the dandruff!

 

[OnceUponaTime]

@Danny Boy Oh my gosh! I do have head and shoulders!!!!!! You had me laughing silly! Thanx!!!!!!! Laughter is the best medicine.

 

[uae96]

I have also had not so good days during the first stage of the "experiment". But now after about 3-4 weeks, it seems to be heading in the right direction: head noise seems to be gone; right side tinnitus seems to be more or less gone, left side tinnitus (since 2013) is still there, but not an "eeee" tone anymore (I think). But again... don't start to open the champagne bottles yet.

Anyway: I do not wish to start opening a dialogue on what to do (or what not to do). We are all a bunch of guinea pigs and the sad truth is that neither we, nor the more learned among us (i.e researchers), really have any idea about the outcome of what we are doing.

You're one lucky Guinea pig for not having any serious side effects for With that dosage for that long

 

[Bart]

@Bart you say it returned to previous levels after a week , how long was your trobalt trial ?

Not very long, 3 to 4 weeks

 

[attheedgeofscience]

You're one lucky Guinea pig for not having any serious side effects for With that dosage for that long

Interesting you should say that. I cannot help but smile at the number of times I have read statements to the effect of "GSK must have faulty pills because I don't seem to be getting the same effects when I take the same dosage". Sometimes I wonder if certain TT-members have actually set their foot in a classroom... Pharmaceutical companies have some of the highest standards of operations you can imagine. For those interested, you can read up on "six sigma" or perhaps @Silvio Sabo can help this forum understand the concept.

 

[valeri]

Not very long, 3 to 4 weeks

Bart what was the dosage you were on?
Was t increase during the course of taking pills or after you stopped?
Thanks!

 

[PatrickG]

@valeri has your t gotten any better after the spike?

 

[Silvio Sabo]

Interesting you should say that. I cannot help but smile at the number of times I have read statements to the effect of "GSK must have faulty pills because I don't seem to be getting the same effects when I take the same dosage". Sometimes I wonder if certain TT-members have actually set their foot in a classroom... Pharmaceutical companies have some of the highest standards of operations you can imagine. For those interested, you can read up on "six sigma" or perhaps @Silvio Sabo can help this forum understand the concept.

Why shouold I have to act teacher?! Richard Dawkings can do it instead

 

[valeri]

@valeri has your t gotten any better after the spike?

It's a bit better but still not down to baseline
I think I increased too fast and experienced rebound effect!

 

[Bart]

Bart what was the dosage you were on?
Was t increase during the course of taking pills or after you stopped?
Thanks!

I was on 200mg three times a day.

After I stopped cold turkey I had a significant increase in my tinnitus, my doctor said that it is dangerous to stop this drug cold turkey as it can indeed create a rebound effect but it is temporary, after a week it returned to the 'normal' level.

 

[PatrickG]

@valeri I wish and hope you recover well from it. Give it some more time and it might settle just fine.

 

[medal]

@attheedgeofscience May I ask how long are you planning to take trobalt?

 

[attheedgeofscience]

@attheedgeofscience May I ask how long are you planning to take trobalt?

Undecided. Until end of January, I guess.

 

[medal]

Undecided. Until end of January, I guess.

Ok so seeing your last comments about 3 till 4 weeks, you are planning to take trobalt for around 6 weeks in total if you stop the end of january? Or am i wrong? Just finished my first week on a very low dose.. If understood correctly best results have been obtained if taken at least 3 till 4 months, with an slow taper up and slow taper down?

 

[attheedgeofscience]

Or am i wrong?

I guess that's why it is still "undecided".