Retigabine (Trobalt, Potiga) — General Discussion

#4,111
Rube said:
Thanks for the response, I'm happy you're doing so well. I read some of your previous posts after the am101 trial where you also mentioned that your t was very low. How much do you attribute to your t being so low now to either Am101 or Trobalt? Or combination of both?
Click to expand...

i feel like the improvement i felt after the 2 AM-101 treatment was probably just psychological. the improvement was nothing compared to the improvement with retigabine. it is just my opinion but i am not too high on AM-101 and i don't really think it helped at all. i just don't think that tinnitus is a cochlear phenomenon, regardless of how you get it, once you have it, it is in your brain. i definitely think retigabine helped a lot. firstly, it DEFINITELY has an effect on your tinnitus, something i didn't experience with AM-101, prednisone, or any of the numerous supplements i tried. and secondly, as i said before, it sort of presents a decomposition of your tinnitus to you, you can decipher all the various frequencies and tones, and also the drug kind of makes you 'high' - i feel as if it helps you in the habituation process in this way.

i'd like to hear what other trialees think about all this... this thread has been quiet of late.
 
#4,117
valeri said:
@Zimichael

I'm just curious if you were thinking of giving RTG another go to see if it would help this time around?
Click to expand...

Valeri...

Firstly, let me be quite emphatically clear...as someone who has tried Retigabine, who has put hundreds of hours into studying it and researching all around it, and who has followed up with "other" aspects of Kv research and researchers involved. There is no doubt in my mind that Retigabine and it's effects on Tinnitus (and Hyperacusis), are REAL...NOT, NOT, NOT PLACEBO. Period!
This also includes of course the side effects we are getting to know so well - even the startlingly, initially unexpected, "mood" drug aspect. (Yeah it affects GABA - maybe remember, but that can create the opposite of an "upper" as classically it's a calming influence! Etc., etc.).

OK, that said, if I were to try another Kv drug it would be AUT0063 of course first, then Keppra second. Retigabine freaked out my H. too much despite clear evidence it has eliminated numerous other's H...some unreported in public on TT, but that I know of.

However, I am not trying any new "Tinnitus drugs" in the near future as have been struggling mightily with an old 20 year nemesis of mine that gets my attention far more than my T (though my H. is what really trashes my life 'out in the world of humans')...and that is a chronic, undiagnosed, gut pain issue c/o contaminated water in the 1990's. It waxes and wanes, and currently it's waxing. So I'm "otherwise occupied" you may say.

Thanks for asking though. And I still try and keep up with the basics here at TT and the Kv's.

best, Zimichael.
 
#4,118
Zimichael said:
However, I am not trying any new "Tinnitus drugs" in the near future as have been struggling mightily with an old 20 year nemesis of mine that gets my attention far more than my T (though my H. is what really trashes my life 'out in the world of humans')...and that is a chronic, undiagnosed, gut pain issue c/o contaminated water in the 1990's. It waxes and wanes, and currently it's waxing. So I'm "otherwise occupied" you may say.

Thanks for asking though. And I still try and keep up with the basics here at TT and the Kv's.

best, Zimichael.
Click to expand...

Have you considered trying mastic gum for gut pain? Used it to erradicate my H Pylori and ulcers from contaminated pipe water during island vacation.
 
#4,119
What bacteria have you in gut ? Also for these bacteria you took ototoxic antibiotics ?
Iam pretty sure that newer antibiotics (with 30x price those that are off patent) will work for this bacteria but lame doctors gave you the cheap old ototoxic antibiotics.
New expensive antibiotics works because it's new and bacteria does not have developed resistance yet.
Example of new non ototoxic & expensive antibiotics is Tigecycline
 
#4,120
gutt pain ? I had blood in my st**l for 6 months in the jungle ... 2 pills of Vermox healed that ... also consider doing a few water cleanses at the hospital for your intestines. It healed a friend of mine from years of gutt pain and the doctors didn`t even know wath to do. I told to do a cleanse and it never came back.
 
#4,121
locoyeti said:
i am looking forward to the progress of the other trialees that have taken high doses and are tapering off @juancarlos, @rtwombly @Danny Boy @Philemon ...
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Hey everyone, i'm sorry to be so late to update but i've been quite busy those last weeks.
I finished my taper down recently, completely stopped trobalt on saturday. Until the middle of last week, everything was fine as usual, but from wednesday to sunday my T was like blocked on the same very bothering and annoying sound, not so loud though (loudness between 1 and 2) ... this is not good news, and i hope i won't experience again those 4-5 days in a raw of bad T ... anyway, I also felt that i was less disturbed by this bad T than before i started trobalt, like @locoyeti said, it somehow helps habituation ... such that during those 4-5 days i was able to work and concentrate (in silence) almost normally (but with some psychological tiredness at the end of day of course).
Yesterday was a good day (as today so far), i keep fingers crossed it will remain like this. I'll keep u posted
 
#4,122
Hi guys, last week i was on 400mg per day, this week on 300 per day
I feel with more energy, more reflex, more productive, i can type very very fast, speak fast english, i can pee strong

T is still in the new pattern, changed by trobalt:
-cleaned tone
-now is surely more in the right ear , before was same on both
i cant surely say if its lower, but surely has new pattern

I have a clue for the argument that T in on the brain and not in the cochlea, all of you can try it at home

As you know I use sometimes residual inhibition with my T frequency. I tried this: listen to a external source the frequency of your T, around 10 seconds but ONLY IN ONE EAR, then stop. this is what i hear after stop
-Same ear, instantly stopped tinnitus
-Other ear, have a spike of 3 seconds, and after that totally stops

so, my conclusion, if T was in the cochlea, other ear woulded reamin with same T ringing
 
#4,123
iam asking again..
Where can i get trobalt online from europe without prescription or prescription in electronic form ?
Can someone to answer me ?
 
#4,128
T
amandine said:
If you read the question it says from EUROPE without prescription or prescription in electronic form........IE. either or but in Europe........LOL........
Click to expand...
If you order from that website, it does not matter where you live, they will send it to the North Pole as long as you send them an electronic prescription!
 
#4,129
@EarsKid , @1MW, @nills ...Thanks, but you have no idea how much more involved my gut stuff is than implied. Indeed all that you suggested is long ago history, etc., etc. However, this is a Retigabine thread and no way I am going to talk about my gut. Except to say, that until it is calmer I am not trying any new T drugs.
Thank you...end of "gut" subject.
Best, Zimichael
 
#4,130
Zimichael said:
@EarsKid , @1MW, @nills ...Thanks, but you have no idea how much more involved my gut stuff is than implied. Indeed all that you suggested is long ago history, etc., etc. However, this is a Retigabine thread and no way I am going to talk about my gut. Except to say, that until it is calmer I am not trying any new T drugs.
Thank you...end of "gut" subject.
Best, Zimichael
Click to expand...

How until it is calmer?
 
#4,131
Juan Carlos said:
Hi guys, last week i was on 400mg per day, this week on 300 per day
I feel with more energy, more reflex, more productive, i can type very very fast, speak fast english, i can pee strong

T is still in the new pattern, changed by trobalt:
-cleaned tone
-now is surely more in the right ear , before was same on both
i cant surely say if its lower, but surely has new pattern

I have a clue for the argument that T in on the brain and not in the cochlea, all of you can try it at home

As you know I use sometimes residual inhibition with my T frequency. I tried this: listen to a external source the frequency of your T, around 10 seconds but ONLY IN ONE EAR, then stop. this is what i hear after stop
-Same ear, instantly stopped tinnitus
-Other ear, have a spike of 3 seconds, and after that totally stops

so, my conclusion, if T was in the cochlea, other ear woulded reamin with same T ringing
Click to expand...


I know this long time, my left ear dont hear above 12kh, so right ear does residual inhibition when i listen sound. Then i get inhibition. Inhibition can be achieved only during highest dosages (first hour after taking trobalt), after it is hard, but it seem that residual inhibition stay if used in first time. Trobalt stop you worry and make you hing and therefore not depressed so you also dont pay attention to tinnitus. So it is not only what happen with tinnitus, secondary is mental effects and it takes minimum 30%.

Trobalt can course serious permanent side effects on neural system that is not listed in side effect pumflet/paper.
 
#4,132
dan said:
http://www.canadapharmacyonline.com/DrugInfo.aspx?name=Potiga6804
These guys will send anywhere in the world if you fax them your prescription!
Click to expand...

@dan
I am fortunate in that memory and I are good friends.
Your above quote you posted at the near end of January around the 25th Jan...
@1MW should be aware of this post as he was posting on the same page asking the same question. The cost of the Canadian on line pharmacy was also quoted (very high).
Hope this helps to clarify........?
 
#4,133
Last time i try to get tinnitus formula pills from US and stopped to customs.
So i want only europe with prescription in electronic form or without prescription.
 
#4,135
seems like standard dosage is 300 mg/tid, although some have had success with smaller doses. Go to early posts of this thread and you'll find options. Good luck with it and hope all goes well!!! Keep us posted
 
#4,136
I got a doctors prescription (viavia) today for big box of 50mg Trobalt. I will find out prices and see another doc if I can get more if I need to. I really would appreciate anyone that can help out with the dosing schedule. Summarizing the principals. This thread has gotten way out of hand to start searching all the information...

just skipped through 20 pages and could not find decent info on the dosing ... I know you have to start low and move up slowly but would like good advice form the experienced people here. Thank you!
 
#4,137
NEW USERS... Please, please, please try and report on User Report Forms in a regular manner as you progress, and also with as much detail as possible regarding the key points that can be used for data analysis. Stuff like clear dose changes, loudness variations in numerical scale, length of time of changes, etc., etc.
@jellyrajah ...could you possibly give more details in your New User Form??? It would be appreciated, to make future evaluation easier regarding the study material being assembled on this "trial". Thanks!

Also... calling @Lake Girl and @OnceUponaTime ...our two intrepid women trialees! Where are you??? How are things going??? No User reports or updates for a very, very long time. Can you check in please!

Thanks, Zimichael
 
#4,138
start at 100mgTID (100mg every 8 hours = 300mg per day). depending on how fast you want to taper up, you should increase that by 50mg TID (so the next taper up wout be 100mg+50mg every 8 hours = 450mg a day). i went really fast, like every 3 days tapered up but other people have gone slower. get to a dosage where you really start to feel something (probably will be 250mg TID or 300mg TID) and then go higher depending on how you feel, and you can taper more slowly after that. good luck.
 
#4,140
Christian78 said:
I know this long time, my left ear dont hear above 12kh, so right ear does residual inhibition when i listen sound. Then i get inhibition. Inhibition can be achieved only during highest dosages (first hour after taking trobalt), after it is hard, but it seem that residual inhibition stay if used in first time. Trobalt stop you worry and make you hing and therefore not depressed so you also dont pay attention to tinnitus. So it is not only what happen with tinnitus, secondary is mental effects and it takes minimum 30%.

Trobalt can course serious permanent side effects on neural system that is not listed in side effect pumflet/paper.
Click to expand...
wich side effects are you refering? i am tapering off, now only 100x3 and i dont feel any of them.
I was thinking, i can do a 3 month treatment every year as it seemed to do some permanent improvement.
BTW i also had residual inhibition withouth trobalt too but surely with trobalt is way better and longer
 

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