Retigabine (Trobalt, Potiga) — General Discussion

[rtwombly]

Well the answer on it is to bee seen, there ate apparently many diferent forms of tinnitus, some treatable, some a with retigabine, some with neuro operation by Swiss doctor, and some totally resistant. How why, well it is just i think pure luck.

That's where we get back to the notion of tinnitus of a symptom rather than a disease. In some cases it appears that tinnitus is just a symptom of another problem, either a mechanical problem in the ears or jaw, or a structural problem in the brain. In other cases, such as Mpt's, it appears that the problem is maladaptive plasticity. Something happens that harms the operation of neurons exhibiting the Kv channels under discussion and the brain falls into a bad pattern that continues after the damage has been cleaned up.

I'm just wondering which one I am. My tinnitus is idiopathic, so I can't say definitely that I'm in that Mpt crowd, but I've also had a number of diagnostic tests show that there's nothing wrong structurally. *Sigh*

 

[Zimichael]

Heh, heh...It's kind of like hanging out laundry (except in California!), then the Gods look down and just for fun, turn on the rain faucet.
So too with Canadian pharmacies...You rail against them on a public forum about being a bunch of slow-to-deliver layabouts...and then your Potiga arrives the same day!
It's a good trick.
You learn some things with age.

I will be starting my Potiga trial as of now....Well with supper in a few hours. Dose @ 50 mg/day, or as near as I can 'cut' it. Yes per day. And yes I know about C(max) loading. And yes I don't give a darn if plasma conc'. dips to China for half the day. I know me, and I know how to go with stuff like this. Day by day is how it will be.

Finally!

Best, Zimichael

 

[Rube]

Heh, heh...It's kind of hanging out laundry (except in California!), then the Gods look down and just for fun, turn on the rain faucet.
So too with Canadian pharmacies...You rail against them on a public forum about being a bunch of slow-to-deliver layabouts...and then your Potiga arrives the same day!
It's a good trick.
You learn some things with age.

I will be starting my Potiga trial as of now....Well with supper in a few hours. Dose @ 50 mg/day, or as near as I can 'cut' it. Yes per day. And yes I know about C(max) loading. And yes I don't give a darn if plasma conc'. dips to China for half the day. I know me, and I know how to go with stuff like this. Day by day is how it will be.

Finally!

Best, Zimichael

@Zimichael thats awesome you received today after thinking you would be waiting longer. i hope you find relief please keep us updated.

 

[SoulStation]

Heh, heh...It's kind of like hanging out laundry (except in California!), then the Gods look down and just for fun, turn on the rain faucet.
So too with Canadian pharmacies...You rail against them on a public forum about being a bunch of slow-to-deliver layabouts...and then your Potiga arrives the same day!
It's a good trick.
You learn some things with age.

I will be starting my Potiga trial as of now....Well with supper in a few hours. Dose @ 50 mg/day, or as near as I can 'cut' it. Yes per day. And yes I know about C(max) loading. And yes I don't give a darn if plasma conc'. dips to China for half the day. I know me, and I know how to go with stuff like this. Day by day is how it will be.

Finally!

Best, Zimichael

Good Luck!

 

[Johno]

Zimichael: Im very curious for efficiency of Potiga on superchronic T. Good luck and dont forget reporting.

 

[Jay M]

Heh, heh...It's kind of like hanging out laundry (except in California!), then the Gods look down and just for fun, turn on the rain faucet.
So too with Canadian pharmacies...You rail against them on a public forum about being a bunch of slow-to-deliver layabouts...and then your Potiga arrives the same day!
It's a good trick.
You learn some things with age.

I will be starting my Potiga trial as of now....Well with supper in a few hours. Dose @ 50 mg/day, or as near as I can 'cut' it. Yes per day. And yes I know about C(max) loading. And yes I don't give a darn if plasma conc'. dips to China for half the day. I know me, and I know how to go with stuff like this. Day by day is how it will be.

Finally!

Best, Zimichael

Good Luck! Like many I will be watching your results with hope. Thank you for volunteering.

 

[jeannie]

Good luck!!

 

[jazz]

I will be starting my Potiga trial as of now....Well with supper in a few hours. Dose @ 50 mg/day, or as near as I can 'cut' it. Yes per day. And yes I know about C(max) loading. And yes I don't give a darn if plasma conc'. dips to China for half the day. I know me, and I know how to go with stuff like this. Day by day is how it will be.

Wishing you only the best! Good luck, indeed!

 

[AntonR]

Good luck man, I really really hope you have positive results.. This stuff seems like its the only thing that has had any real positive lasting effects for people, finally seems like a step in the right direction.

 

[RichL]

Yea good luck @Zimichael , I will be watching with interest as a fellow long term sufferer,(24 years), like yourself.

Rich

 

[SteveToHeal]

Good luck Zimichael. I will be watching your updates with keeness. All the best. Steve

 

[Rube]

Is there any indication yet if retigabine also helps H?

 

[Mr. Cartman]

@Zimichael

I really hope that it will provide some nice results for you!

I got a prescription as well.. I think I might give it a try in a little while!

 

[rtwombly]

Is there any indication yet if retigabine also helps H?

No one in the user experience thread has mentioned having it, so no. @Markku maybe this could be added as a question on the forms?

 

[lapidus]

Is there any indication yet if retigabine also helps H?

No one of our brave trialees so far have had H. However, @Zimichael have H and will begin today (good luck buddy!). @jazz and other smart people on this forum think that potassium modulators might help with H too. Since scientists believe that T and H is the same type of damage, something that will treat T, will also treat H. Autifony has stated in their patent that AUT00063 will help with sound sensitivity if it works.

Read these threads:
https://www.tinnitustalk.com/thread...-treatment-of-hearing-loss-and-tinnitus.1607/

https://www.tinnitustalk.com/threads/advances-in-the-neurobiology-of-tinnitus-and-hyperacusis.5410/

And if you find the time to read through this whole thread, I think the subject has been discussed here too.

 

[Hudson]

I meet with my psychiatrist again today, and she's supposedly on board with giving me the referral to a neurologist. Whether they'll give me a prescription is another thing. We'll see! I'm glad to see that there are so many working so hard to try this and journal their experiences.

 

[Christian78]

Please don't criticize me on scream on me I am ok person

i went up to 300 mg with doctor consent. Right now i don't hear my t but i took pill 2h ago. I don't know will it last. I went 2 days ago on 300 mg x 3. At this moment I can not say i can hear tinnitus that i got may 2013. It sounds like t that i had 15 y ago just from a gun unnoticeable that i did not ever pay any attention, barely bearable.

I study at university really extremity hard subject one of hardest and as mush i stress myself i get it worse, and i took a dilution juice 1l to 9l i took i thin 4 bottles of it in las 10 day it taste good, and when you study you need water, and it had citrone, E330, aspartame, acesulfam-k, fenylanin. E211, E202. MAYBE THEY COUSED RAISE IN WHEN I TOOK IT INSTEAD OF WATER ENTIRE DAY. Oppinions on chemicals and studies; what to do ? continue studies?? take a bra and wait for autifony?? kill myself??

 

[Hudson]

Please don't criticize me on scream on me I am ok person

i went up to 300 mg with doctor consent. Right now i don't hear my t but i took pill 2h ago. I don't know will it last. I went 2 days ago on 300 mg x 3. At this moment I can not say i can hear tinnitus that i got may 2013. It sounds like t that i had 15 y ago just from a gun unnoticeable that i did not ever pay any attention, barely bearable.

I study at university really extremity hard subject one of hardest and as mush i stress myself i get it worse, and i took a dilution juice 1l to 9l i took i thin 4 bottles of it in las 10 day it taste good, and when you study you need water, and it had citrone, E330, aspartame, acesulfam-k, fenylanin. E211, E202. MAYBE THEY COUSED RAISE IN WHEN I TOOK IT INSTEAD OF WATER ENTIRE DAY. Oppinions on chemicals and studies; what to do ? continue studies?? take a bra and wait for autifony?? kill myself??

Hopefully that improvement lasts, or continues to build! I am very happy to hear this.

 

[Hudson]

@Christian78 please remember to journal your experiences with our progress forms! Thanks

 

[cdog]

I study at university really extremity hard subject one of hardest

What's the subject name, if you don't mind (just curious)?

 

[SteveToHeal]

Please don't criticize me on scream on me I am ok person

i went up to 300 mg with doctor consent. Right now i don't hear my t but i took pill 2h ago. I don't know will it last. I went 2 days ago on 300 mg x 3. At this moment I can not say i can hear tinnitus that i got may 2013. It sounds like t that i had 15 y ago just from a gun unnoticeable that i did not ever pay any attention, barely bearable.

I study at university really extremity hard subject one of hardest and as mush i stress myself i get it worse, and i took a dilution juice 1l to 9l i took i thin 4 bottles of it in las 10 day it taste good, and when you study you need water, and it had citrone, E330, aspartame, acesulfam-k, fenylanin. E211, E202. MAYBE THEY COUSED RAISE IN WHEN I TOOK IT INSTEAD OF WATER ENTIRE DAY. Oppinions on chemicals and studies; what to do ? continue studies?? take a bra and wait for autifony?? kill myself??

Fantastic news. I hope it keeps your T down. Thanks for the update. all the best!

 

[Champ]

This potassium channel stuff seems very legitimate at this point - now we're getting more examples of the research & real world experiences meshing up.

Autifony is gonna rake in the big bucks if they can pull off what Retigabine does but more targetted.

 

[SteveToHeal]

This potassium channel stuff seems very legitimate at this point - now we're getting more examples of the research & real world experiences meshing up.

Autifony is gonna rake in the big bucks if they can pull off what Retigabine does but more targetted.

Now if we only knew which listed company to invest in so that we too can ride the big bucks!

 

[AntonR]

Please don't criticize me on scream on me I am ok person

i went up to 300 mg with doctor consent. Right now i don't hear my t but i took pill 2h ago. I don't know will it last. I went 2 days ago on 300 mg x 3. At this moment I can not say i can hear tinnitus that i got may 2013. It sounds like t that i had 15 y ago just from a gun unnoticeable that i did not ever pay any attention, barely bearable.

I study at university really extremity hard subject one of hardest and as mush i stress myself i get it worse, and i took a dilution juice 1l to 9l i took i thin 4 bottles of it in las 10 day it taste good, and when you study you need water, and it had citrone, E330, aspartame, acesulfam-k, fenylanin. E211, E202. MAYBE THEY COUSED RAISE IN WHEN I TOOK IT INSTEAD OF WATER ENTIRE DAY. Oppinions on chemicals and studies; what to do ? continue studies?? take a bra and wait for autifony?? kill myself??

Thats absolutely awesome christian, I'm thrilled that its once again working for you! keep us updated please.

 

[Rube]

This potassium channel stuff seems very legitimate at this point - now we're getting more examples of the research & real world experiences meshing up.

Autifony is gonna rake in the big bucks if they can pull off what Retigabine does but more targetted.

Hopefully not too many side effects.

 

[Champ]

Hopefully not too many side effects.

Yeah. I think that's part of Autifony's plan - if they can target only the channels that need to be and no more, they can minimize the negative aspects of it.

 

[Rube]

Yeah. I think that's part of Autifony's plan - if they can target only the channels that need to be and no more, they can minimize the negative aspects of it.

I certainly hope so. But as others have mentioned they seem to be on right track with targeting voltage gated potassium channels....of which I admittedly don't really understand.

 

[rtwombly]

I study at university really extremity hard subject one of hardest and as mush i stress myself i get it worse, and i took a dilution juice 1l to 9l i took i thin 4 bottles of it in las 10 day it taste good, and when you study you need water, and it had citrone, E330, aspartame, acesulfam-k, fenylanin. E211, E202. MAYBE THEY COUSED RAISE IN WHEN I TOOK IT INSTEAD OF WATER ENTIRE DAY. Oppinions on chemicals and studies; what to do ? continue studies?? take a bra and wait for autifony?? kill myself??

Your case is so interesting, Christian, because you do feel everything to do with the retigabine experience, good and bad. I am glad you have had some more success so that it is not all bad!

On these drinks: as tinnitus sufferers, we have an extra reason to pursue good health, it is true. But I think much of our negative reaction to something like you describe is just fear. If you had no tinnitus, would you worry about drinking an artificial beverage now and then? Right now I'm not drinking coffee, tea, or alcohol. One of the reasons I want to be cured is so I can drink them again! I won't drink so much coffee or tea as I used to because I know now it is not good for me. I never drank alcohol much. But I would like to be able to say, "One whisky won't hurt."

If you must drink something other than water, my friend, don't worry. You must do what you must to get through your studies. Thank you again for sharing your story.

@Hudson, hope it goes well with the neurologist.

 

[Martin69]

Please don't criticize me on scream on me I am ok person

Why should we criticize you? All the opposite.
You are so brave taking the drug accepting side effects. And you pay for this on your own.
And in addition you inform us about your progress.
You are one of the ones keeping our hope up and running.
I wish you the drug is working for you on the long run and you will have silence again.

 

[cdog]

On these drinks: as tinnitus sufferers, we have an extra reason to pursue good health, it is true. But I think much of our negative reaction to something like you describe is just fear. If you had no tinnitus, would you worry about drinking an artificial beverage now and then?

Has the Aspartame - Tinnitus connection been firmly established? Or is it yet another unverified rumor or myth regarding the "dangers of aspartame".