Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

I highly encourage you to google "tRNS and Tinnitus". There's a wealth of encouraging information out there using this technique!

and it is so expensive, you need to do surgery to get it in or, becouse it would be ok if i get link, but if it chip it cost a lot.

I got nothing on what you suggested. no search results

 

[Christian78]

Ok thanks.

tRNS is trans cranial random noise stimulation. It's a different cranial stimulation strategy that they've found more effective for tinnitus treatment. The "noise" is electrical noise, not noise as in actual sound.

You can find the device I use here:

http://foc.us/

Cool device! But as I said I have yet to find a treatment that actually works for me.

ahaaaa

now i know, well that is what they did for me in belguim, 20 min TDCS and then that noise 20 min, you get flashes a little in eyes?

 

[Vaba]

Has anyone with specifically noise-induced tinnitus tried this with any success? 254 pages is a little much to search through...

 

[dj_newark]

ahaaaa

now i know, well that is what they did for me in belguim, 20 min TDCS and then that noise 20 min, you get flashes a little in eyes?

Yup! You've got it. It sounds like you're already doing tRNS! That's what produces the little "flashes in the eyes".

It's supposed to be superior to tDCS in suppressing tinnitus. So I haven't tried using tDCS with my cranial stimulator. Though I suppose I could if you're finding luck with tDCS.

But as I keep saying nothing provides relief. So either my electrode placement is shit. As I'm doing this completely on my own and I have no expertise. Or my tinnitus is so severe that I'm beyond help or hope.

I'm stimulating the t3-t4 with anodes on the t4 and on the f3-f4 (same anode cathode placement). That's using the 10-20 eeg placement. I have one of the caps.

The t3-t4 is supposed to stimulate the auditory cortex. And the f3-f4 is supposed to work with the DLPFC. That's supposed to regulate your emotional response to the disorder.

So as I've said I've been doing this on my own so far.

But I've found a place here in my hometown of Newark, NJ that calls itself the Nerocognitive institute. They use neurostimukation and have agreed to use techniques like tRNS and rTMS with me.

They're also doing loads of functional testing with me. Scares the shit out of me how poorly I do with them.

I'm supposedly a "highly paid professional". But how can that be if my cognitive skills are such shit??

Oh and by the way my job is most definitely in danger. The writing is most definitely on the wall. I could pretty easily move into another high paying job. But what would be the point? I'm at a real crossroads.

Also, this place I'm telling you about just did a Loretta brain scan on me. The results in about a month. Wonder what scary shit they'll find there.

I plan on ramping up to higher levels of the retigabine. And keeping on with the tRNS, acoustic neural stimulation (PAXX-100), and microtransponder VNS treatments.

But who's to say it won't all be completely futile?

 

[Mithrandir]

Excuse me gentlemen but I think this thread is for Trobalt. Not for another subject.

 

[Christian78]

Yup! You've got it. It sounds like you're already doing tRNS! That's what produces the little "flashes in the eyes".

It's supposed to be superior to tDCS in suppressing tinnitus. So I haven't tried using tDCS with my cranial stimulator. Though I suppose I could if you're finding luck with tDCS.

But as I keep saying nothing provides relief. So either my electrode placement is shit. As I'm doing this completely on my own and I have no expertise. Or my tinnitus is so severe that I'm beyond help or hope.

I'm stimulating the t3-t4 with anodes on the t4 and on the f3-f4 (same anode cathode placement). That's using the 10-20 eeg placement. I have one of the caps.

The t3-t4 is supposed to stimulate the auditory cortex. And the f3-f4 is supposed to work with the DLPFC. That's supposed to regulate your emotional response to the disorder.

So as I've said I've been doing this on my own so far.

But I've found a place here in my hometown of Newark, NJ that calls itself the Nerocognitive institute. They use neurostimukation and have agreed to use techniques like tRNS and rTMS with me.

They're also doing loads of functional testing with me. Scares the shit out of me how poorly I do with them.

I'm supposedly a "highly paid professional". But how can that be if my cognitive skills are such shit??

Oh and by the way my job is most definitely in danger. The writing is most definitely on the wall. I could pretty easily move into another high paying job. But what would be the point? I'm at a real crossroads.

Also, this place I'm telling you about just did a Loretta brain scan on me. The results in about a month. Wonder what scary shit they'll find there.

I plan on ramping up to higher levels of the retigabine. And keeping on with the tRNS, acoustic neural stimulation (PAXX-100), and microtransponder VNS treatments.

But who's to say it won't all be completely futile?

I used trobalt when i done loreta. (notice I mention Trobalt as this is about trobalt)
Dr. said i was on very very low dosage of trobalt. He told me loreta he done would take 1 month BUT he done it in 24h for me especially.

They must find over EEG same patient similar to you and then try what helped him...

 

[Pumpkinate]

Has anyone sourced Retigabine from an online international pharmacy? Here in Australia it is not imported. I can get a script no problem but I think many of the online pharmacies are probably dodgy. If anyone knows of a genuine company I could deal with I'd love to know!

Cheers,

Steve

 

[dj_newark]

at calls itself the Nerocognitive institute. They

I used trobalt when i done loreta. (notice I mention Trobalt as this is about

and it is so expensive, you need to do surgery to get it in or, becouse it would be ok if i get link, but if it chip it cost a lot.

I got nothing on what you suggested. no search results

Hmmm... I'm a little surprised to hear you say that!

Here's one article I found on this:

http://m.jneurosci.org/content/31/43/15416.full

Oh and also, yes I am supplementing my tRNS with 400mg a day of Potiga (Trobalt).

I think the T is a little more easy to live with when I'm under the influence of the Potiga. But I'm not sure it's not a placebo effect that I'm experiencing.

Certainly no dramatic relief as of yet. But I've only been doing it for about a week at this point and been ramping up from 100mg to the current 400mg per day. I hope to get up to 300mg at 3x per day (900mg total) soon as I can. And assuming I can get enough of a supply by convincing my psychiatrist to prescribe that much for me....

 

[Jamclem]

@dj_newark I hope all goes well with your tRNS and Potiga. Keep us posted on your progress

 

[dj_newark]

Excuse me gentlemen but I think this thread is for Trobalt. Not for another subject.

I do talk about retigabine (Trobalt) in my post. Read more carefully if you've missed it.

However we're under no obligation to limit the conversation to just one topic. We're here to help each other get well.

 

[dj_newark]

@dj_newark I hope all goes well with your tRNS and Potiga. Keep us posted on your progress

Thanks I hope so too. I upped my dose from 200mg per day to 400mg the other night. And woke up having a minor convulsion. I spent a while afraid I was going to have a seizure. That never happened though, fortunately.

And I've felt absolutely no relief as of yet. Complete bummer.

 

[Leon909]

@dj_newark
my doc told me that trns is only felt after several weeks. Sorry to hear that trobalt isn't helping. It's the same for me. It helped me a little after taking 300mg TID for 4-5 weeks.

 

[dj_newark]

@dj_newark
my doc told me that trns is only felt after several weeks. Sorry to hear that trobalt isn't helping. It's the same for me. It helped me a little after taking 300mg TID for 4-5 weeks.

Thanks, I don't intend to stop. In fact I can't stop trying to fix this. There's no way to communicate this experience of how horrendous this disease is. I come here because people know.

But I can't live with this disease without fighting it every way I can.

Oh and yeah. I don't intend to stop with the Trobalt for the foreseeable future.

 

[Rosie_Rose]

I've been on clonazepam for 23 yrs to treat generalized myoclonus. While it allows me to function daily without constant movement I can attest that it does nothing for my tinnitus.

 

[Pumpkinate]

Bugger, GSK is going to stop production of retigabine.

I started 2 days ago and just starting to feel it's helping.....

 

[Aaron123]

@Pumpkinate
Where did you hear that?

 

[Pumpkinate]

From the horse's mouth, GSK.

 

[Kyxwz]

Bugger, GSK is going to stop production of retigabine.

I started 2 days ago and just starting to feel it's helping.....

WHAT??? REALLY??? No i want start trobal now. I must to see a doc for prescription.

I have T since 17 feb. due an acoustic trauma. Is it better if i use Trobalt now? Peraphs i am in acute phase so work well for me, i don't know. What do you think?
Any experience?

 

[monacco]

Bugger, GSK is going to stop production of retigabine.

Why?

 

[linearb]

From the horse's mouth, GSK.

source plz

 

[Kyxwz]

Don't joke. Retigabine is my last chance!!

 

[Dana]

Bugger, GSK is going to stop production of retigabine.

source plz

You cannot start a rumor like that without providing some prove that the rumor is true.
Another member said something similar and since that I started to have big fear to try it, and my change in opinion about trying may be based on a false rumor.
Please provide some prove that you are not spreading false rumors.
This is not a joke.

 

[Pumpkinate]

I'm trying to help everyone by giving them a heads up rather than depress you all. Particularly those of you who are on larger doses and want to ramp down at the end of treatment.... you might want to make sure you have a supply of the lower dose tablets soon.

I enquired with GSK in Australia regarding opening the supply of retigabine in this country and was told that they can't because GSK is ceasing production. I emailed them back to clarify if they mean cease supply worldwide and I quote their response:

Hi Steve,

Yes, GSK has discontinued this totally globally too now (recent development).

I can't give you this guy's contact details for three reasons:

1. I'm not sure if GSK has made this information public yet and I don't want to cause trouble.

2. This was through the doctors liaison channel rather than for patients/public.

3. The email is private/confidential.

In any case, even if the production has stopped already, there would I imagine be a supply for a while due to warehouse/pharmacist stores.

Good luck!

 

[Kyxwz]

I'm trying to help everyone by giving them a heads up rather than depress you all. Particularly those of you who are on larger doses and want to ramp down at the end of treatment.... you might want to make sure you have a supply of the lower dose tablets soon.

I enquired with GSK in Australia regarding opening the supply of retigabine in this country and was told that they can't because GSK is ceasing production. I emailed them back to clarify if they mean cease supply worldwide and I quote their response:

Hi Steve,

Yes, GSK has discontinued this totally globally too now (recent development).

I can't give you this guy's contact details for three reasons:

1. I'm not sure if GSK has made this information public yet and I don't want to cause trouble.

2. This was through the doctors liaison channel rather than for patients/public.

3. The email is private/confidential.

In any case, even if the production has stopped already, there would I imagine be a supply for a while due to warehouse/pharmacist stores.

Good luck!

Holy shit. I have call gsk italy today and they tell me that there are no problem with retigabine so i don't know.

 

[Pumpkinate]

Holy shit. I have call gsk italy today and they tell me that there are no problem with retigabine so i don't know.

They may not know if it's not been publically announced yet. I have in the past found out about cessation of medication production well before it's general knowledge.

 

[Christian78]

Simplest way is just to call a company GSK private person and ask for Trobalt and they will tell you, they do. They did so to me in Sweden when I asked, bcs there happen once 6 months there was no trobalt in pharmacy so, they told me all is ok, but no one informed them and they made new printout of pamphlets and boxes and it was in pharmacy in 3 weeks so...

I dont trust really what "some guys said"... manipulation is so easy thing

if they end it then someone else will take to produce it on much lower prices

 

[Christian78]

Bugger, GSK is going to stop production of retigabine.

I started 2 days ago and just starting to feel it's helping.....

I am just going to to complain on your post of Spreading rumors.

I heard they are issuing new trobalt with less side effects.

 

[Pumpkinate]

We will see, the proof will be if you can still buy them in a few months....

 

[Kyxwz]

We will see, the proof will be if you can still buy them in a few months....

I hope so! It's a very singular pharma. I hope that remains on market; in italy there are Trobalt for now without problem. I wrote to GSK england facebook (central) and they tell me that:

Hi --My apologies for the delay. Let me look into this and get back to you. Michael

so i am waiting

 

[Kyxwz]

Ah there is someone that after take retigabine and after stop it... T remains better than before? Because my intention is to try it and use it just one time in a year, for example during holiday, not always.