Retigabine (Trobalt, Potiga) — General Discussion

Can i also ask have you got any hearing loss? Thanks (sorry for all the questions)

 

I have no plans to come off of it... I will be having eye exams every 6 months and if that happens to deteriorate then ill cross that bridge when I come to it... No one has has serious vision changes due to this drug so far

 

One more thing I've noticed is when I plug my ears I have a very quiet seashell sound in my left ear that never existed before, I can't hear it with my ear against a pillow or even with my hands over my ears I literally have to plug my ears to hear it, at the same time my tonal t that I've had for 5 months has quited to such a point that I don't even hear it everytime when plugging my ears to check for it... I'm not sure if the sound has just been changed or what, but this seashell phenomenon I literally probably could have had for an entire lifetime before t and I don't think I would have ever noticed it

 

Really great news Matt, honestly i would have a hard time believing this in most circumstances but from our history on here i absolutely belive you and don't think its a placebo effect. I will talk to my doc about it soon, i have a very good relationship with him so I think hell let me give it a try. Ill prob wait until i retake my LSAT though, just as a precaution, but im excited, and this gives me a lot more confidence in AUTIFONY as well, thanks for keeping everyone updated bro.

 

Yeah I am super excited as well ! I have learned to not get my hopes up too much though.

 

I know what you mean, but I think the fact that it works similarly to how autifony will work, also the rat study with autifony, and MPTs results its not overly optimistic to think at the very least we may have something that lowers the volume. Also i don't know of anyone who has tried this drug with tinnitus other than mpt, i was looking online so we also dont have any stories of anyone not getting results, which doesn't prove a thing of course, but its reason for cautious optimism imo.

 

Indeed...I will admit, cannot wait to try this

 

Hope it doesn't make T worse if you have to at some point come off it! Guess that's a gamble I'm willing to take anyway!!

 

Mpt: take NAC, vit. C, Magnesium, Lutein, vit.A, B12, beta-carotene and some another eye beneficial supplements to prevent changes in the retina.

 

Mpt: How about try to make the dosage lower? For example from 3x300mg to 3x200 and then 3x100mg? Maybe benefits stays unchanged and probability of side effects will be significantly reduced.

 

Mpt,
What print out did you take to show your doctor? Would you mind putting up a link?
I have not really got a decent relationship with a family doctor or any doctor really so I'm probably going to have a bit of a struggle to get one to prescribe this to me I think!

Rich

 

I can't believe there isn't more on this drug as far as people trying it for tinnitus relief.

Has anyone found or heard of anybody else having tried this besides Mpt? Is it just Mpt here? If so maybe this is a good thing?

As far as I can see this drug is 100 percent so far being that Mpt is the only person having gone this route that I know/heard of.

Or are there others? I know there have been rodent tests, but is that it? Maybe I'm missing something.

Or maybe Autifony knows this drug works and they are just piggy backing it, tweaking it?

 

No, I've combed the internet as well and I can't find anything.
I agree, I can't understand why no doctor or whoever have not seen a connection unless this is the only drug that targets eon channels, then it would be understandable, these drugs would, or are, still in there infancy stage so it was just waiting to happen that someone would see the connection and not just the scientists working on them!
I can guarantee that they, (the scientists working on Autifony) knew the connection, but they wouldn't want to let that out before they release there drug?

Rich

 

The instructions available online say to start with a low dose - 50 or 100mg, 3 times a day - and step it up by the same amount each week until results are experienced or you hit the max dose, which I think was 1200mgs/day. You can get the tablets in 50, 100, 200, or 300mg each.

If I can persuade my neurologist to let me try, I mean to step it up even more gradually than that, and will report on my experience. I looked up my pharma benefits today and I actually think I'm covered for this, so the only thing to do now is convince the doc.

 

Believe it!

and yes, this is the only drug that targets Kv7 channels so far in the whole pharmaceutical drugs library, so it is no wonder that doctors don't know about it. and even if some doctors heard of it, they still have to make a connection to tinnitus - which I think, only Autifony and related scientists did.

 

I guess I am lucky in the sense that my doctor considers me the leading authority on T.
On a more morbid note , he says that he is unwilling to lose more people to T and is ready to try anything.
He's as serious as T.

 

Why, did he lose any people to T ?

 

I did not ask for details , that is what he said. He also said that he considered this a life threatening condition in some cases. I might add that he himself has T, although it is pretty low volume for him.
The only doctor I have found that uses the same terminology to express himself about T as we do.

 

Yeah my doc called mine a medical emergency. And that he would do whatever. Nice to know they at least take it seriously.

 

Hey Telis ...sorry to bother you but could you possibly post links to the literature on Regtigabine/Autifony which you printed to show to your doctor?

 

Sure , just have to find them. Give me a bit

 

I j

Just had a brain storm. I looked up the info on the University of Pittsburg identifying Retigabine as a means to prevent tinnitus in animal models. The news was reported in June 2013. At the time, nobody made the leap to suggest that tinnitus could be treated or cured by Retagabine's mechanism of action. Just like we've discussed on the AU00063 thread, they likely did experiments on their hypothesis, in this case prevention, then executed the models.

Mpt is ideally situated as a test candidate since he would be considered in the acute phase, not yet chronic. If there really is a difference at all, I'm betting it's maladaptive plasticity, which will still yield to treatment, just not as quickly. It may turn out that Retigabine is enough of an intervention to cure new cases of tinnitus outright, and only chronic cases are so entrenched to need a more targeted therapy like AU00063. Or maybe....

This is exciting stuff! I may point out to my neurologist that if he's successful treating my case, there's surely an article in it for him.

 

Cool thank you so much!

 

thought this might be of interest. a very indepth document ( 61 pages in total ) about this product. one interesting piece of info is under a summary heading on page 28, point number 4, as per below,

In vitro data suggested that retigabine may interact with KCNQ channels in the inner ear, but this was not addressed in in vivo animal studies.

www.tga.gov.au/word/auspar/auspar-retigabine-131017.docx

 

@Telis if you could send it to me too that would be great. I'm going to see my doctor as soon as possible about it

 

That's what its supposed to sound like. I remember that sound very well.

Conjecture - maybe it's his brain rewiring over a short period of time with the sound properly being handled by the auditory system now? Would be interesting if that's it.

 

Yes I do think that seashell sound is just the blood rushing, Normal .

 

A friend of our family is taking Trobalt® (retigabine) for dystonia (a rare neurological movement disorder), and the drug has literally taken away all of her symptoms, and as long as she keeps taking low doses, she consider herself 99.9% symptom free.

I might ask her for a few tabs and try this out for myself as well (as she is visiting my mother right now).

She has been taking them for years, at a low dose she says, and hasnt had any nasty side effects from them. At least thats what she said.

Hmm.. Could be worth a try.

 

another update... yesterday and today I've had basically complete silence like before T... I had one instance of fleeting tinnitus for maybe a few seconds like I used to get maybe once every few months for pretty much my whole life, but other than that I haven't heard anything... although I will still come on the forum everyday, I think I'm going to only update regarding tinnitus levels about once a week from now on, because frankly most days I hear nothing or faint ringing for a few seconds and that's it, and I feel silly coming on here everyday reporting another day of silence-- otherwise, I'll definitely update the thread in short order if anything out of the normal occurs

 

Thank you for the updates Mpt keep us posted you are giving us all hope