Retigabine (Trobalt, Potiga) — General Discussion

[SoulStation]

This is my doctor, he's been following me for nearly 5 five years now, he knows I am a reasonable person, he knows my background, and I just went there, told him very simply that it got worse recently.
Then I told him that we both know there is not much to do yet, but I have a friend who had some improvements with Potiga. (did not tell him that it was an online friend that I never met, but fuck it, just a technicallity lol)

I told him that I know that patients should not come with ready made solutions, but the risk to try a few weeks potiga are very limited as I am healthy as fuck and if there is no improvement I will be the first one to stop taking the drug.

And even if it doesn't work I rather feel disapointed than regretful. Plus if it works on me, it may help another patient.

He said, "ok but we are going to do it my way, you will start with some more classic treatment for accute T. increase, 4 days of steroid, you will also do full a check up with an ENT and only then you will carefully try the potiga."

He took his phone, call the ENT directly, and he got me an appointment the next day.

So I had the appointment today with the ENT, he was really bad, and I have to come back tomorrow for a few more tests, then on friday I should get my dope, hopefully lol

Thank you so much for your lengthy explanation ...I really appreciate it and am excited for you! I know you'll share your results soon and I really hope this works for you...

 

[Zimichael]

Yeah....no doubt lots of us watching and waiting here!

I have a consult with my doc in a few hours and Potiga is on the list. Like your doc @benryu , we go back a long way, so it's very much a near "peer" conversation. He was also the doc that gave me the meds that caused the stage 3 level in my T (and the H which had not had before really) in 2006....so there is ahhhhh, "incentive" behind helping with this.

So obviously...keep us posted you guys! Zimichael

 

[benryu]

Yeah....no doubt lots of us watching and waiting here!

I have a consult with my doc in a few hours and Potiga is on the list. Like your doc @benryu , we go back a long way, so it's very much a near "peer" conversation. He was also the doc that gave me the meds that caused the stage 3 level in my T (and the H which had not had before really) in 2006....so there is ahhhhh, "incentive" behind helping with this.

So obviously...keep us posted you guys! Zimichael

@Zimichael, just out of curiosity, what drug increased your T. ?

By the way, cool story, I went to the audiologist today for the check up, and after discussing with her on the latest research, she happened to know the person in charge of the AM101 in Canada, the doctor is working in the clinic near my house *_*, and told me that she will introduce me to her as they had a case of recent increase in chronic T. treated sucessfully with the AM101.
Nothing sure, but if I can get it, I'll try for sure.

 

[Philip83]

@Zimichael, just out of curiosity, what drug increased your T. ?

By the way, cool story, I went to the audiologist today for the check up, and after discussing with her on the latest research, she happened to know the person in charge of the AM101 in Canada, the doctor is working in the clinic near my house *_*, and told me that she will introduce me to her as they had a case of recent increase in chronic T. treated sucessfully with the AM101.
Nothing sure, but if I can get it, I'll try for sure.

Wow, awesome! This gets my hopes up a bit if I get on the trials in Austria where I live atm. As you know I've had an increase, or "addition", to my chronic T which is definitely more present in the ears than in the head like the chronic one. Hopefully I'll get on it!

Could you maybe give me the name of the clinic? Would be nice to be able to reference a similar case to mine if one of the trials contact me. Thanks!

 

[benryu]

Wow, awesome! This gets my hopes up a bit if I get on the trials in Austria where I live atm. As you know I've had an increase, or "addition", to my chronic T which is definitely more present in the ears than in the head like the chronic one. Hopefully I'll get on it!

Could you maybe give me the name of the clinic? Would be nice to be able to reference a similar case to mine if one of the trials contact me. Thanks!

Yeah I am going to contact the doctor, and if she confirms me what the audiologist said, I'll definetelly share all details here to make sure it can benefit to other people.

 

[Telis]

Yeah I am going to contact the doctor, and if she confirms me what the audiologist said, I'll definetelly share all details here to make sure it can benefit to other people.

What pharmacy are you using? I can't find it here in calgary.

 

[benryu]

What pharmacy are you using? I can't find it here in calgary.

Find what ?

 

[Philip83]

Yeah I am going to contact the doctor, and if she confirms me what the audiologist said, I'll definetelly share all details here to make sure it can benefit to other people.

Cheers! (Share in the AM-101 thread though I guess )

 

[Telis]

Find what ?

Sorry...trobalt. My doctor said he can't find it. I've called around a bit and doesn't seem anyone stocks it.

 

[Golly]

Sorry...trobalt. My doctor said he can't find it. I've called around a bit and doesn't seem anyone stocks it.

Did you ask for it by the generic name Retigabine? -G

 

[benryu]

Sorry...trobalt. My doctor said he can't find it. I've called around a bit and doesn't seem anyone stocks it.

Dude, you wont find any trobalt in Canada... The drug is called potiga here haha.
Trobalt is the brand for Europe ONLY.

Same shit, just some marketing crazyness.

 

[Telis]

Did you ask for it by the generic name Retigabine? -G

Yes I did.

 

[Telis]

What!!! My doc said it was Trobalt here!! Haha. Man what a shit show!!

Dude, you wont find any trobalt in Canada... The drug is called potiga here haha.
Trobalt is the brand for Europe ONLY.

Same shit, just some marketing crazyness.

!!!

 

[Philip83]

Not sure if this has been posted here.

http://medicalxpress.com/news/2013-05-scientists-mechanism-noise-induced-tinnitus-drug.html

 

[benryu]

FYI @Telis

http://en.wikipedia.org/wiki/Retigabine

It was approved by the European Medicines Agency under the trade name Trobalt on March 28, 2011, and by the United StatesFood and Drug Administration (FDA), under the trade name Potiga, on June 10, 2010.

 

[mmacabre]

did you try ezogabine?

 

[Golly]

FYI @Telis

http://en.wikipedia.org/wiki/Retigabine

Also from the Wiki site for Retigabine:

"This mechanism of action is unique among antiepileptic drugs, and may hold promise for the treatment of other neurologic conditions, including migraine, tinnitus [emphasis added] and neuropathic pain."

This must be a relatively recent addition as it cites to the May 27, 2013, news on this topic. How exciting!

-Golly

 

[benryu]

Also from the Wiki site for Retigabine:

"This mechanism of action is unique among antiepileptic drugs, and may hold promise for the treatment of other neurologic conditions, including migraine, tinnitus [emphasis added] and neuropathic pain."

This must be a relatively recent addition as it cites to the May 27, 2013, news on this topic. How exciting!

-Golly

I agree that it has some potential and we will have more answers as a few of us are going to try it (myself included). But I would be careful until we get some results, Wikipedia is not a reliable source and we should not get too carried away. Retigabine seems to be close to the AUT00063 but far from being as specific. It could be a good option to help us wait for the real cure

 

[dan]

@benryu

Wait, so I'm a little confused here. From reading some more material, which I posted in the Autifony thread, the Kv7 or KCNQ family has 5 subunits. (Autifony being a Kv7.3 or subunit #3)

Now, I'm understanding that Retigabine is classified as a general Kv7 channel opener- correct ?
So does that mean it acts on all of the subunits together?

 

[dan]

On another note of some concern........it appears that tinnitus reappears after treatment is stopped:

To evaluate the role of potassium channels in the tinnitus generation, rats with salicylate induced tinnitus where treated with Maxipost, a positive modulator of Kv7.2 - Kv7.5 channels or R-Maxipost, a negative modulator of Kv7.2 - Kv7.5 channels (Lobarinas et al, 2011). Surprisingly, both compounds completely suppressed salicylate induced tinnitus in a dose dependent manner. Tinnitus reappeared after drug washout [bolded to highlight].

http://books.google.ca/books?id=AT1...epage&q=kv7 potassium channel auditory&f=true

 

[Mpt]

hey dan,

Didn't the rats in the autifony study remain tinnitus free after getting off the drug?-- if so I wonder how to reconcile the two...

 

[Mpt]

been a few days since my last update... the only time I have heard it was when putting my head on the pillow last night in my silent room, no masking etc... it was really faint, to the point if I'd never had tinnitus and wasn't sensitive, I'm not sure I would notice it usually, right now with fingers in ears... nothing

 

[undecided]

Thanks for the update Mpt.
Hope you continue feeling the silence.

I bet a lot of people around here would give this drug a go, however it's extremely difficult to find.

 

[rtwombly]

hey dan,

Didn't the rats in the autifony study remain tinnitus free after getting off the drug?-- if so I wonder how to reconcile the two...

Maybe it's the broadband approach of Retigabine vs. the targeted approach of AU00063. Then again, I don't recall seeing anywhere that they re-tested the rats at 30/60/90 days. I do seem to recall a "hopefully" in the quote about AU00063 eventually training the channels to regulate themselves, which would be the lasting effect.

 

[Hudson]

been a few days since my last update... the only time I have heard it was when putting my head on the pillow last night in my silent room, no masking etc... it was really faint, to the point if I'd never had tinnitus and wasn't sensitive, I'm not sure I would notice it usually, right now with fingers in ears... nothing

How long have you been taking retigabine then? How long before you noticed the change? That's really awesome man, I support anyone who finds a solution that works for them! Please keep us updated for sure!

 

[Hudson]

hey dan,

Didn't the rats in the autifony study remain tinnitus free after getting off the drug?-- if so I wonder how to reconcile the two...

Rats used at the end of a study are typically killed unless they intend to continue monitoring them for whatever reason.

 

[caffclifton]

Where can you get this drug? Is it a test drug or can doctors prescribe it?

 

[lapidus]

Where can you get this drug? Is it a test drug or can doctors prescribe it?

It's a drug for epilepsy so it's not a test drug. It's out there. In Europe the brand name is Trobalt.

 

[caffclifton]

WOW! Im going to mention this to the hearing department once I get my referal date! I'm going to make sure i follow this post. Cant wait to hear @benryu and @Telis results!!

 

[Zimichael]

Hey @benryu (how do you gets get the darn "quote" to appear??? Ahaa... I think this does it?!

@Zimichael, just out of curiosity, what drug increased your T. ?

What drugs - plural would be more accurate! You are a technical guy so here's the list. This was 2006. I was so shit-faced I just went with the program until got out of hand...[Docs thought I had Lyme, then bacterial infection, then IBD, then SIBO, then opportunistic mold/fungal, then opp. parasitic infections hammering my weakness, etc. [Incidentally, Pimental's work at Cedars Sinai was REAL BIG at the time re 'curing' IBS with antibiotics = oral Neomycin at that point, but they forgot about trashed 'leaky gut' folks...Oooops! meds got through to systemic!]

So, all oral...not IV: Neomycin 500 mg BID for 5 weeks, then added Amphotericin 1cc. BID for 5 days (Tinnitus had > dramatically so I stopped the Neomycin, then the Ampho.) Then Xifaxan taper up, but I refused as T and new H out the roof. A week later Nystatin TID, with one nasal spray of 1% Nizoral (Ketoconzole) that blew my head off and sent the T screaming and cemented the H....Then I quit as was no longer human = a piece of quaking jelly.

Hope that answers your question ....and yeah it was nuts, but I did not sue. None of us knew. Docs were doing their best...There was total ignorance back then that the large molecules in oral Neomycin and Ampho could get extra-intestinal. Etc. ,etc., etc.

Back to Retigabine/Potiga.....I had a 'dynamic' appointment with my doc (yeah same as above...excellent...really) yesterday as mentioned here. I'm not going to report on that all as this is the wrong thread. But he checked Potiga out and is totally willing to prescribe it and we can see what a few weeks to a month of it does.
However...there are now about three things ahead of that on our agreed list:
1. Neural Therapy (shooting Prociane near the sympathetic nerves at C6 and C7 ganglia in neck, with hopes of cooling down CNS and H in particular).
2. Ketamine...targeting H more than T.
3. Chinese Skullcap & Senega Root for H and to try and get me to sleep! My sleep is a disaster.

All above will help with depression tendency too which has been big currently since I came off Tramadol, trailing clouds of fire and hell, which I nearly quenched by becoming 'at one' with a lake.

Best... Zimichael