Retigabine (Trobalt, Potiga) — General Discussion

[RichL]

Guys it has to be said but if you consider the facts here,this might actually be the first condition where the people got so tired of waiting for a cure for their condition that they came up with one themselves.Will possibly be getting this drug soon but still dont know if its available here,anyway of checking before I make an appointment so I dont waste my time??

Go online or yellow pages for your equivalent of our (New Zealands) PHARMAC, they will control any drugs that come into your country and if they are anything like pharmac over here, they will be very informative and willing to give you all the info you need.
It's not available here but if I can get a doctor to prescribe it then it can be brought in (at a cost) by a pharmacist so it is very accessible for me all be it a lengthy process!.
Good luck!

Rich

 

[dan]

How much does Trobalt/Potiga cost in the USA?

 

[SteveToHeal]

Guys it has to be said but if you consider the facts here,this might actually be the first condition where the people got so tired of waiting for a cure for their condition that they came up with one themselves.Will possibly be getting this drug soon but still dont know if its available here,anyway of checking before I make an appointment so I dont waste my time??

Hey guys - I'm doing the OMG cat (jaw drop!!) here this morning. To date 3 people on it ... and getting relief in different proportions... and more willing to buy/try. This is a movie/doccy waiting to be made! If anything, it will garner interest and hopefully put the spotlight on T.

 

[Christian78]

I would like to say that we are getting sure that Autifony will work...

Today second day on 200 mg x 3 per day, I would like to say but I am afraid to jinx it. I feel my second day on 200 x 3 per day and i thing when I listen my Tinnitus went down like between 30-45% plus i don't get spikes. ( i had really reactive tinnitus)

(usage program was 3 day 3 x 100, 3 days 3 x 200, then normal dosage)

 

[Martin69]

Wow. Too good to be true. I still do not trust this.
If the next three people report a lower or disappearing T, the first thing I do is buying GlaxoSmithKline or Autifony stocks (if those exist). But this is off-topic. I think it is too early to have something concrete.
I am lucky for the ones who got relief here. Unfortunately I cannot get Trobalt in Germany. It was removed from the market.

 

[Mr. Cartman]

Be optimistic! our body has some great qualities of self-healing. I had abandoned the motorcycle (for pay the cure). I do not get up out of bed more. I cried forever. Now I hope to weep for joy. Use any type of business that you think might help you. I know what pain is. The displeasure. I lost my job, girlfriend and more ... STRENGTH AND COURAGE!
Best Wishes i will pray for you

I hope so bad that your health will start to improve and that your T will resolve!

You've been through enough pain, its about time that things turn around for you!

And for everybody else that is having a hard time!

STRENGTH AND COURAGE!!

 

[Viking]

Dear friends... i want share a thought with me for 8 years... When i was in despair and depression (long long time) for the tinnitus condition (because is not the depression to cause t but the T CAUSE TENSION ANXIETY AND DEPRESSION) I organized various methods to actually shoot myself and not be found for not giving grief to my family. Whenever I was "ready" I thought ... "Now I'll kill myself and tomorrow someone finds a cure" then I placed the gun and continued to take unnecessary medications but above all PRAY and cry... see the list. Now is 2014 (i'm chronic by 2006) and i have found (thanks to you) a medicament that give a real relief! After so many pills I think I know how to distinguish what is really effective. I know it will seem excessive, but when a person is in despair, deprived of sleep, accompanied everywhere by a hallucination sound quality of life is a mess. Look at the photos of the past and do not believe in yourself. I write this for those who are desperate and feel of not making more .... BE PATIENT STUBBORNLY. Sooner or later we will win ....
Ivan

 

[EddyLee]

What a great news! Salute to everyone here who tried the drug and shared your experience with us.
The force is strong with this one!

 

[Robb]

Dear friends... i want share a thought with me for 8 years... When i was in despair and depression (long long time) for the tinnitus condition (because is not the depression to cause t but the T CAUSE TENSION ANXIETY AND DEPRESSION) I organized various methods to actually shoot myself and not be found for not giving grief to my family. Whenever I was "ready" I thought ... "Now I'll kill myself and tomorrow someone finds a cure" then I placed the gun and continued to take unnecessary medications but above all PRAY and cry... see the list. Now is 2014 (i'm chronic by 2006) and i have found (thanks to you) a medicament that give a real relief! After so many pills I think I know how to distinguish what is really effective. I know it will seem excessive, but when a person is in despair, deprived of sleep, accompanied everywhere by a hallucination sound quality of life is a mess. Look at the photos of the past and do not believe in yourself. I write this for those who are desperate and feel of not making more .... BE PATIENT STUBBORNLY. Sooner or later we will win ....
Ivan

Please confirm on this post how much did your T improved because of Trobalt usage, how much you take, how long!
Thanks

 

[Viking]

Please confirm on this post how much did your T improved because of Trobalt usage, how much you take, how long!
Thanks

With only 100mg i obtain from 30 to 50 % of relief. Consider my problem with Rivotril. For now is only an experiment. I cant take 200 because i have an excessive sedation. Damned benzos...
I am very tempted to remove Rivotril at night replacing it with the Trobalt. They are both anti-epileptic...

 

[stelar]

Does anybody here live in Egypt and can find out if they carry Trobalt and for how much?

 

[Grace]

With only 100mg i obtain from 30 to 50 % of relief. Consider my problem with Rivotril. For now is only an experiment. I cant take 200 because i have an excessive sedation. Damned benzos...
I am very tempted to remove Rivotril at night replacing it with the Trobalt. They are both anti-epileptic...

You already got a 30-50% reduction from reg/trobalt? Is it consistantly? You should talk to your doc bout gettin off the benzo and then slowly tapperin up the trobalt to see if theres more effects on T.

 

[Zimichael]

Hey guys (and gals)... I'm totally shit-faced from having my belly up root canal molar pulled and stitches in my lip (2 hours in the surgeon's chair!), or I would be dumping my: "Next on the list Neural block of sympathetic nervous system at neck ganglia ref H"...to go straight at his Retigabine! But not in this condition...plus I'm supposedly heading for my "anti-depressant" 12,000 ft. mountains with my daughter a week from today! Sigh!!! This thread/treatment is getting better and better!

OK...For those who are asking or wondering about Potiga in the USA and what the cost is, go back to my post that was lost in the dust of a few days back!...It's available, it's online gettable, it's not to outrageous in price! All you need is a prescription (point a gun at your doc!) and you could get it. My doc has already said he will do it [yeah the one that still feels bad about giving me the big ramp up in T and H in 2006].

This is at the top of the post: HEY - GOOD NEWS ON PRICES! (USA)

I did more follow up today and found out some stuff, but first off the $$$ aspect (Even Telis will like this! )... Half the price c/o CVS pharmacy, and the 400 mg tablets! Here's the breakdown:
~ 30 tablets @ 400 mg = $280
~ 30 tablets @ 200 mg = $280
~ 30 tablets @ 50 mg = $142.50
So, the obvious target is the 400 mg tablets and cut to size!

Also what we are beginning to see is that a LOWER dose may work! Also for smaller people you should consider that anyway, as your plasma saturation levels will be significantly higher if you take 900 mg a day and you are 5 ft. tall and way 110 pounds, versus a 250 pound gori.... Ummm, big person.
Again see my later post on that aspect too.

To all you pioneers trying this...21 gun salute and a big THANK YOU!

Best, Zimichael

 

[Telis]

No offence, but it's the first time I see you around here, would you mind posting a picture of the drug boxes so we can have the confirmation that you're legit.

Thanks !

Guess he wasn't legit!

 

[Viking]

You already got a 30-50% reduction from reg/trobalt? Is it consistantly? You should talk to your doc bout gettin off the benzo and then slowly tapperin up the trobalt to see if theres more effects on T.

Yes is constantly. If you see my previous post undestand that my goal is to eliminate Rivotril. Yeah tonight I'm tempted to replace it and take Trobalt for the night and tomorrow morning so be on 200mg but I have the chance to see my neurologist tomorrow. He had already told me that there should be no problems because Rivotril is a benzodiazepine primarily anti epileptic. So are drugs of the same class! Let's hope so!

 

[Zimichael]

Hey ATEOS... I asked my doc that same question about Ketamine and Tinnitus. You know like: "Hey if this can reboot the brain and stop tinnitus then how come it's not all over the T community and medical establishment. After all they use Ketamine in my county a lot as a general anaesthetic!"

He threw up his hands and said: "Because most people are idiots and they don't care! It's ridiculous how much stuff is known but not accepted or acted on in medicine. Just with Ketamine for instance, forget tinnitus...it is a KNOWN excellent anti-depressant, but do you think that gets the light of day? No way. Another one to be discovered by archaeologists! Most people just don't report shit with this kind of thing, or they just tell their spouse or whatever. But making a big hoo-hah about it or talking to a doc that just nods and goes "That's interesting" and promptly ignores it. Forget it."

So, point being...Retigabine may have affected people's tinnitus but they were so busy dealing with epilepsy or whatever, did not bother to take it to the rooftops and announce it.

Anyway, the more people who try it here, the more we will find out. These are beginnings, but encouraging ones for sure.

Incidentally, with your great "financial and company snoopings" do you know if is there a link between Autifony and GlaxoSmithKlein??? Potiga was only approved in June 2011 here in USA and Autifony says that is when they were founded, c/o their website. All pretty recent.

Best, Zimichael

 

[JoelA]

Hi im new to this forum, i've had tinnitus for about a year now and im 14 years old, mpt really give me some hope for the future. and im from sweden

 

[Telis]

Hey ATEOS... I asked my doc that same question about Ketamine and Tinnitus. You know like: "Hey if this can reboot the brain and stop tinnitus then how come it's not all over the T community and medical establishment. After all they use Ketamine in my county a lot as a general anaesthetic!"

He threw up his hands and said: "Because most people are idiots and they don't care! It's ridiculous how much stuff is known but not accepted or acted on in medicine. Just with Ketamine for instance, forget tinnitus...it is a KNOWN excellent anti-depressant, but do you think that gets the light of day? No way. Another one to be discovered by archaeologists! Most people just don't report shit with this kind of thing, or they just tell their spouse or whatever. But making a big hoo-hah about it or talking to a doc that just nods and goes "That's interesting" and promptly ignores it. Forget it."

So, point being...Retigabine may have affected people's tinnitus but they were so busy dealing with epilepsy or whatever, did not bother to take it to the rooftops and announce it.

Anyway, the more people who try it here, the more we will find out. These are beginnings, but encouraging ones for sure.

Incidentally, with your great "financial and company snoopings" do you know if is there a link between Autifony and GlaxoSmithKlein??? Potiga was only approved in June 2011 here in USA and Autifony says that is when they were founded, c/o their website. All pretty recent.

Best, Zimichael

I believe autifony is a spin off company of GlaxoSmithKlein.

Sorry, I can't remember where I read this.

 

[cullenbohannon]

GSK has a 25% ownership of Autifony i think.

I believe autifony is a spin off company of GlaxoSmithKlein.

Sorry, I can't remember where I read this.

.

 

[dan]

Hey guys (and gals)... I'm totally shit-faced from having my belly up root canal molar pulled and stitches in my lip (2 hours in the surgeon's chair!), or I would be dumping my: "Next on the list Neural block of sympathetic nervous system at neck ganglia ref H"...to go straight at his Retigabine! But not in this condition...plus I'm supposedly heading for my "anti-depressant" 12,000 ft. mountains with my daughter a week from today! Sigh!!! This thread/treatment is getting better and better!

OK...For those who are asking or wondering about Potiga in the USA and what the cost is, go back to my post that was lost in the dust of a few days back!...It's available, it's online gettable, it's not to outrageous in price! All you need is a prescription (point a gun at your doc!) and you could get it. My doc has already said he will do it [yeah the one that still feels bad about giving me the big ramp up in T and H in 2006].

This is at the top of the post: HEY - GOOD NEWS ON PRICES! (USA)

I did more follow up today and found out some stuff, but first off the $$$ aspect (Even Telis will like this! )... Half the price c/o CVS pharmacy, and the 400 mg tablets! Here's the breakdown:
~ 30 tablets @ 400 mg = $280
~ 30 tablets @ 200 mg = $280
~ 30 tablets @ 50 mg = $142.50
So, the obvious target is the 400 mg tablets and cut to size!

Also what we are beginning to see is that a LOWER dose may work! Also for smaller people you should consider that anyway, as your plasma saturation levels will be significantly higher if you take 900 mg a day and you are 5 ft. tall and way 110 pounds, versus a 250 pound gori.... Ummm, big person.
Again see my later post on that aspect too.

To all you pioneers trying this...21 gun salute and a big THANK YOU!

Best, Zimichael

What about 300mg ?
That's the dosage we need x3 per day

 

[Viking]

Hey ATEOS... I asked my doc that same question about Ketamine and Tinnitus. You know like: "Hey if this can reboot the brain and stop tinnitus then how come it's not all over the T community and medical establishment. After all they use Ketamine in my county a lot as a general anaesthetic!"

He threw up his hands and said: "Because most people are idiots and they don't care! It's ridiculous how much stuff is known but not accepted or acted on in medicine. Just with Ketamine for instance, forget tinnitus...it is a KNOWN excellent anti-depressant, but do you think that gets the light of day? No way. Another one to be discovered by archaeologists! Most people just don't report shit with this kind of thing, or they just tell their spouse or whatever. But making a big hoo-hah about it or talking to a doc that just nods and goes "That's interesting" and promptly ignores it. Forget it."

So, point being...Retigabine may have affected people's tinnitus but they were so busy dealing with epilepsy or whatever, did not bother to take it to the rooftops and announce it.

Anyway, the more people who try it here, the more we will find out. These are beginnings, but encouraging ones for sure.

Incidentally, with your great "financial and company snoopings" do you know if is there a link between Autifony and GlaxoSmithKlein??? Potiga was only approved in June 2011 here in USA and Autifony says that is when they were founded, c/o their website. All pretty recent.

Best, Zimichael

Im convinced that there is a link between glaxo and autifony and also because it is one of their sponsors. the pfizer, in financial difficulties, it is replaced by funding immediately without waiting for the results of the second trial even ...! and also because it is one of their sponsors. the pfizer, in financial difficulties, it is replaced by funding immediately without waiting for the results of the second trial even ...!

 

[Telis]

I hope the sedation affect alone from retigabine is not what is contributing to the perception of lowered tinnitus.

From what I understand various drugs with this sedating affect can contribute to this perception.

Hope I'm wrong!

 

[Mpt]

I hope the sedation affect alone from retigabine is not what is contributing to the perception of lowered tinnitus.

From what I understand various drugs with this sedating affect can contribute to this perception.

Hope I'm wrong!

I can't speak for anyone else, but for me that's definitely not the case... The tinnitus has been gone, GONE this weekend, not only have I not heard it during the day, but even when I've gone looking for it in silent places and with my fingers in my ears... Nothing, there is no sound to be found

 

[benryu]

Guess he wasn't legit!

Well he had T. since 1998 if I recall his profile, it might be some 45 ich years old not very intense on forum. He probably just drop a line and will never come back here. Anyway it doesn't matter much, it's working on reliable members, and I do hope I'll be the next one to share my exp

 

[benryu]

I hope the sedation affect alone from retigabine is not what is contributing to the perception of lowered tinnitus.

From what I understand various drugs with this sedating affect can contribute to this perception.

Hope I'm wrong!

It would be quite unlikely I think, there are much more powerful sedative drugs, that don't do half of what this drug seems to do.
Can't wait to try it, I have gathered up T. evaluation methodologies (minimum masking, etc..) from other T. studies so I can be very precise in what I share with you guys.

 

[jazz]

It would be quite unlikely I think, there are much more powerful sedative drugs, that don't do half of what this drug seems to do.
Can't wait to try it, I have gathered up T. evaluation methodologies (minimum masking, etc..) from other T. studies so I can be very precise in what I share with you guys.

Looking forward to you trying the drug!

 

[SoulStation]

Hey @benryu If there's anything you think I should show my doctor that you have found on the web about retigabine or AUT that you have found l would love to know. (Trying to get a RX for it next week or possibly the following). I only ask because you seem to very knowledgable on the research that's been done on both of these drugs. Thanks and I really hope you get the 'dope' soon.

It would be quite unlikely I think, there are much more powerful sedative drugs, that don't do half of what this drug seems to do.
Can't wait to try it, I have gathered up T. evaluation methodologies (minimum masking, etc..) from other T. studies so I can be very precise in what I share with you guys.

 

[benryu]

Hey @benryu If there's anything you think I should show my doctor that you have found on the web about retigabine or AUT that you have found l would love to know. (Trying to get a RX for it next week or possibly the following). I only ask because you seem to very knowledgable on the research that's been done on both of these drugs. Thanks and I really hope you get the 'dope' soon.

I am not that knowledgable, I just had T. for a while and read a lot. Know your ennemy!
Jokes aside, it depends on your doctor, you have two different strategy I guess.

The empirical naive patient: (works with Dr with a big ego)
- Tell him/her that some fellow T. sufferer you are in touch with were offered this drug "off label" by their ENT and had very positive results. You're aware of the risks and would like to give it a go on a short period.

The informed patient: (works if your doctor seems to be invested with you)
- You can also ask your doctor to do some quick research, he will see that retigabine is activating similar potassium channels as the AUT00063 (an upcoming drug for T.), it's not as specific but the closest we can get on the market at the moment.

A mix of both could work too.

Good luck !

 

[SteveToHeal]

Guess he wasn't legit!

Why would someone BS T on a forum like this, saying he got better from Retigabine? Working fro Autifony? Garnering investors?

 

[Mikel]

Does anyone know in which European country doctors are willing to write prescriptions for this?

I have Tinnitus since three months and the doctors I've seen weren't helpful so far. They stuck to: "you need to rest and learn to live with it" and were unwilling to write prescriptions for much less serious medications.