Retigabine (Trobalt, Potiga) — General Discussion

[SteveToHeal]

Agreed Mpt. You are giving every T sufferer here hope that they too can be T free one day! All the best and may those side affects be nil !

 

[lapidus]

I think more scientists should be all over this. Not just the people at Autifony. There should be at least 10 different companies working on this potassium channel approach now IMO.

 

[Champ]

I'd be willing to try this out for a couple weeks just to see what it's like.

Acquiring it... gotta figure that part out.

 

[RaZaH]

Man, thank you so much , I am still trying to get a hold of this drug .
Cannot wait..like literally cannot wait , sitting by my phone waiting to hear from my doc.

 

[Hudson]

Man, thank you so much , I am still trying to get a hold of this drug .
Cannot wait..like literally cannot wait , sitting by my phone waiting to hear from my doc.

RaZaH, I would be interested to hear your experiences as well. Your tinnitus seems to be a little more chronic than everyone else, and if it has a positive impact on you, that will be huge IMO.

 

[RaZaH]

Trust me, you guys will be the first to know !
I am just praying that it will not be a problem getting a hold of it.

 

[Johno]

How about to try another potassium channel opener? Flupirtine ? Some experiences someone?

 

[RaZaH]

Google says that Flupirtine is not efficient for T.

 

[RaZaH]

Anyone else here that has gotten this drug or is planning to ?

 

[Hudson]

Thinking about it

 

[Telis]

Trust me, you guys will be the first to know !
I am just praying that it will not be a problem getting a hold of it.

you could try an online pharmacy, they could possibly ship it to you. I know Canadadrugsonline.com has it. Unfortunately they won't ship within Canada, something to do with our laws here in Canada. They might however ship to Iceland. I know they will ship to US and other countries.

 

[RaZaH]

@Telis I doubt that would work out , they might ship it but customs would never let that through.

 

[Hudson]

I don't know how it works in other countries, but in the US if a pharmacy does not carry a specific medication, you can ask them to order it. They will get it for you.

 

[Telis]

@Telis I doubt that would work out , they might ship it but customs would never let that through.

I don't know, they do business some how with other countries. And no business within the country they are based. I phoned them, they said if I was in the US they could get the drug to me no problem, but because I was in Canada it wouldn't clear customs. I think it depends on the country you are in and it's own laws. Could be wrong, that's what I gathered from the convo I had with them.

 

[RaZaH]

If I understand my Dr correctly this drug is rather rare and can only prescribed under certain conditions.
He was very busy when I called him and I am waiting for him to call back , I will know in a couple of hours.
If it clears then I am on my way to the pharmacy asap.

As for icelandic customs , you cannot not get anything past them , I would have more luck importing a kilo of cocaine than something clearly marked as prescription drugs.

 

[Zechariah]

I'd be really interested what happens if Mpt stops taking the drug. But nevertheless, this is really encouraging to follow

 

[RaZaH]

Yes, me too. I will not promise anything but it is my current plan to try and stop if it works.
Obviously MPT only had T for 5 months and it might have just cleared up ?

 

[James White]

@Mpt haven't you participated in the am101 trials ?

what are the chances of people being epileptic with tinnitus stopping with retigabin and reporting it to their GP... then GP will they take time to report to the tinnitus researchers ?

my question is : why only now ? is it a new drug ?

 

[Grace]

I'd be really interested what happens if Mpt stops taking the drug. But nevertheless, this is really encouraging to follow

Yeah curious also. But it does seem like its 99.9 % the drug that cured/took away the loudness. Really just cant wait til someone with chronic-- or anyone in general that gives this a shot and it works especially cause its kinda on the same track as autifony. Im feelin more calmer bout the side effects since he spoke with his doc and found out that there minimal with the eye stuff. And like others said i cannnot believe there isnt more doctors/researchers investigating this.. Except autifony nd whom ever else!

 

[Zechariah]

Yes, me too. I will not promise anything but it is my current plan to try and stop if it works.
Obviously MPT only had T for 5 months and it might have just cleared up ?

If you do that, keep us posted. I'm considering the drug aswell alltho I've had my T only 3 months and I'm coping with it somehow besides falling asleep takes 1-3 hours even with masking and it's really loud. I can hear it while driving 80mph on interstate like Mpt described his T at first posts.

Anyway, if I have this loud T after next 2-3 months still, I'll be taking the drug aswell.

Yeah curious also. But it does seem like its 99.9 % the drug that cured/took away the loudness. Really just cant wait til someone with chronic-- or anyone in general that gives this a shot and it works especially cause its kinda on the same track as autifony. Im feelin more calmer bout the side effects since he spoke with his doc and found out that there minimal with the eye stuff. And like others said i cannnot believe there isnt more doctors/researchers investigating this.. Except autifony nd whom ever else!

Indeed, Alltho I feel so much calmer too when I...could you say..."know", that there is a good chance that I don't have to hear my T for the rest of my life. Tbh, I don't care so much about blindless. I'd rather be in silent darkness than in visible hellish noise

 

[lapidus]

Yes, me too. I will not promise anything but it is my current plan to try and stop if it works.
Obviously MPT only had T for 5 months and it might have just cleared up ?

Yes, but it would be an unbelieveable coincidence if such intrusive T that MPT had cleared up on it's own at the same time he started with this dug. I'm certain that the drug is doing this.

 

[DaRkSon]

My guess is that since this drug has such a short metalife it wouldnt have an effect of start/stop. Im going to check with my pain doctor in a few days about this drug. It does fall under the classification of neuropathy pain medication. just depends on my pain doctor...

 

[RaZaH]

Yes, but it would be an unbelieveable coincidence if such intrusive T that MPT had cleared up on it's own at the same time he started with this dug. I'm certain that the drug is doing this.

Indeed , but I would not put it past T to pull such a stunt and fool us all

 

[Telis]

So this drug is not available in Canada apparently. This is what my doctor says and what I am told by a couple of pharmacies. Not sure what to do now.

 

[RaZaH]

@Telis . Well , that sucks .

 

[Telis]

@Telis . Well , that sucks .

Guess I will have to go to the US

 

[Champ]

what are the chances of people being epileptic with tinnitus stopping with retigabin and reporting it to their GP... then GP will they take time to report to the tinnitus researchers ?

Obviously low since these guys get tons of patients.

my question is : why only now ? is it a new drug ?

The earliest publication I could find from wikipedia was dated November 2007... 7 years ago is pretty recent in drug world.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2096728/

The reason for the hype now is because it was shown to quash tinnitus in rats, as the Kv7 potassium channel dysfunction was identified as a big culprit for the creation and maintenance of tinnitus, which this drug regulates. Similar to Autifony, actually.

 

[RaZaH]

Yes, the drug is pretty new , was registered over here in 2011.

 

[benryu]

My guess is that since this drug has such a short metalife it wouldnt have an effect of start/stop. Im going to check with my pain doctor in a few days about this drug. It does fall under the classification of neuropathy pain medication. just depends on my pain doctor...

Actually this is not exactly what should happen, if we aggregate most recent works around T., we can say that T. is more a state than a permanent reorganization of the brain, and the auditory system (brain side) is not affected. In other words the drug is expected to help the brain to reactive potassium channels that were just "locked". Depending on how long you had T. it will have inertia for sure, but it means that as soon as you reopen the valve, it's not suppose to go back the other way.
Now the big question is, "is this drug precise enough in terms of channel subdivision?"

 

[Telis]

Actually this is not exactly what should happen, if we aggregate most recent works around T., we can say that T. is more a state than a permanent reorganization of the brain, and the auditory system (brain side) is not affected. In other words the drug is expected to help the brain to reactive potassium channels that were just "locked". Depending on how long you had T. it will have inertia for sure, but it means that as soon as you reopen the valve, it's not suppose to go back the other way.
Now the big question is, "is this drug precise enough in terms of channel subdivision?"

Hey. I know you had stated you can get this drug in Montreal a while back. I keep being told that this drug is not avail in Canada. I am really Confused here. What pharmacy told you they could get it?

I was told by a couple of local pharmacies here in Calgary that it wasn't avail, even after they had contacted the drug company.

Help me out here man! Thx