Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

@Christian78 I guess not everybody with T experiencies H. What you described is what I call "reactive tinnitus", that's diferent from H.
H is when some sounds (high pitched) feel super loud that makes you so annoyed, in some cases/people can even feel pain in the ears with that sounds, the inmediate reaction is to close your ears as a super high volume sounds was playing.
In my case I have some H but not severe, I feel it with high freq sounds of course but also when I am talking myself, that weirdly forces me to talk softer some times

then i have it to some degree fore i did not mind high sounds, now i must regulate radiators (heating elements) so they don't produce hiss near me, and ventilator some of them i cant stand to listen...

 

[Juan Carlos]

then i have it to some degree fore i did not mind high sounds, now i must regulate radiators (heating elements) so they don't produce hiss near me, and ventilator some of them i cant stand to listen...

You mean "now" as while taking Trobalt as it has raised your sensibility to those sounds? or it has been always the same even before starting the tratment? If the sound of a fan affects you I yould say you have high H and it doesn't seem to be cured by trobalt

 

[Champ]

hi guys 63 pages... so trobalt cures tinnitus?

In some members, it has caused a complete cessation of tinnitus.

In many members, it has caused a noticeable reduction.

In a few members, it has had little effect.

YMMV

 

[Zimichael]

As I taper off the Retigabine I thought I would share a couple of observations/stories...

Trobalt Toilet Tales

OK, this is not going to be a "dinner table" subject for some, but to me it's just what we humans do so is no big deal. If any other Trobalt users have noticed this please chip in.

So, I live in California. We have a drought. We are supposed to not waste water. Flushing toilets is a big water user. When I was hippie living in communes way back we thought we would change the world by this motto next to the toilet seat: "When it's yellow let it mellow. When it's brown flush it down!". Sigh! We were so much younger then, we're....Anyway, you get the idea.

When taking Trobalt I made sure I drank enough water to avoid any tendencies toward 'Urinary Retention' (for obvious reasons), and also to make sure I was getting rid of the metabolites.

Elimination:Results of a mass balance study suggest that renal excretion is the major route of elimination for ezogabine and NAMR. About 85% of the dose was recovered in the urine, with the unchanged parent drug and NAMR accounting for 36% and 18% of the administered dose, respectively, and the total N-glucuronides of ezogabine and NAMR accounting for 24% of the administered dose.

*NAMR = N-acetyl Metabolite of Ezogabine/Retigabine

Back to the toilet…So at night when I got up to pee I would not flush. One of the rip-offs about getting older is one tends sleep less and pee more at night. Morning greeting = a nice medium-pale yellow toilet bowl. No big deal…except the smell! Mmmmmm. Wow, and I don't smell so good either so it must be pretty strong. A sweet ester-type apple aroma. Not bad, but my ex would have gone ballistic (she could out-perform forensic Bloodhounds!). Also it left a yellowish stain when I flushed…No biggie, just use the toilet brush, swish it around and flush again. Go about my Trobalty day and hope for tonal transformation. Etc., etc.

By around 300 mg/day total this "mellow yellow" was definitely more noticeable. By 450 mg/day I could smell it on me when I sweated on my Stairmaster…No sweat (sic), as I'm alone so who cares. But, what was much more interesting, was what was happening to the toilet brush!

Sitting in it's holder it was turning this colour: A reddish shade of brown!

Mmmm…I scratched my head and as it had been a bright white brush for years decided to rinse it more thoroughly in the bowl. No dice. Well to hell with it. I left it for a few more days as was too busy on the TT forum, and trying to get more Trobalt.

But then it got to be a really weird rich-red-brown! The higher the Trobalt dose the more it "brown-reddenized"…Shit! This is goofy I thought, so stuck it in a small bucket of strong chlorine bleach out on my deck for the day. That usually fixes any stain on plastic stuff…Nope! Did not do a thing. I was impressed. OK, hot water and Oxy-Clean…Nope! Well, maybe it's an alkaline residue, so next day I stuck it in vinegar (used to clean toilet bowls with hard water just fine). Zero. No change… "Well holy shmoly!" That's when I wondered what the inside of my bladder may be starting to look like!!! (Yeah, yeah, I know it's more 'bio' and 'dynamic' than that, but still). Thus I pulled out the big guns…I had some industrial strength Muriatic Acid for etching concrete in my tool shed. This is 'nuke grade' stuff. Kevlar container. One whiff and it takes your nose off. Big time caution around it. POWER GRADE warfare (I did not sign the Geneva Conventions). I dosed up that small bucket with a very concentrated acid-water mix and stuck the toilet brush in, holding my breath all the time from the fumes. Periodically I would go out on my deck to see what was happening to the red-brown offender and jiggle the brush up and down. Tough dude!!! It slowly, slowly worked on the stains and took all darn day to return the brush to white. I have never seen anything 'organic' shine off Muriatic Acid for more than a few seconds if it was going to affect it at all.

This gave me a big time "Mmmmmmmmmmmmmmmmmmmmmmm?????!!!!!" about what may be going on with the Retigabine metabolites and my kidney/bladder, etc.

So, there's a "Trobalt Tale" for the day. Not saying I have any conclusions really, but indeed have some "wonderings".

P.S. Here's a link to esters and smell for those bored enough to look at such things (scroll down to 'List of ester odorants': http://en.wikipedia.org/wiki/Ester#List_of_ester_odorants

Best, Zimichael

 

[Rube]

@Zimichael I guess that is one of the fears of taking these heavy duty meds. What toll are they taking on the body in order to have their desired effect? I wonder if @Christian78 or anyone else noticed the same thing with their urine. I forget the other persons name who was having some kidney issues while on retigabine.
For what it's worth in my area if I don't clean the bowl regularly I get that reddish shade under the water line....most probably due to hard water.

 

[Zimichael]

This was not water-line for sure. I know that one!...Whole different palette.

 

[Rube]

@Zimichael i hope your urine wasnt red was it?
I hope we see less of these side effects with AUT00063.

 

[Christian78]

You mean "now" as while taking Trobalt as it has raised your sensibility to those sounds? or it has been always the same even before starting the tratment? If the sound of a fan affects you I yould say you have high H and it doesn't seem to be cured by trobalt

I have 3 fans, i sleep with one, i have other like a heater, but one has special frequency and my t get worse form him, when i listen him 10 sec i become agitated and radiators hiss when water passes trough is also one terrible sound. I never before payed attention on it but now when i have T. And talking is always kept to lower level, as it looks like i irritate myself when i speak loud (I have highers possible male voice,

@Zimichael I guess that is one of the fears of taking these heavy duty meds. What toll are they taking on the body in order to have their desired effect? I wonder if @Christian78 or anyone else noticed the same thing with their urine. I forget the other persons name who was having some kidney issues while on retigabine.
For what it's worth in my area if I don't clean the bowl regularly I get that reddish shade under the water line....most probably due to hard water.

My urine gets orange but one has to take more water. Morning is most orange. I have tested it for blood but it is ok. There is many medication that turn urine darker. It can be medicine going out. the most orange is in the morning.

 

[Hengist]

@Zimichael I am doing alright, but that is primarily because I am now on dexamethasone, it seems that it reduces my tinnitus most effectively and it also reduces a pain in a part of my face just above a tooth root so that might be connected as less face pain less tinnitus both react on dexamethasone.

As for those who think that your case is due to chronic decades age I doubt it. Retigabine made my tinnitus worse and rapidly and I took it 2 months after I got tinnitus.

My opinion is that retigabine is too much of a shotgun drug and for some it works good for some it does not, kinda like with what this drug is originally made for, epilepsy. Some patients react really well but most do not.

 

[SteveToHeal]

I am now on dexamethasone, it seems that it reduces my tinnitus most effectively

Just a quick one because i know it is off topic to Retigabine. Any side effects or known long-term side effects from dexamethasone? How much would you say your T has improved? Say before dexamethasone, your t was a 9/10. What is it now? Maybe a 3/10? What were your scores before and after dexamethasone out of 10? Thanks.

 

[lapidus]

@Zimichael I am doing alright, but that is primarily because I am now on dexamethasone, it seems that it reduces my tinnitus most effectively and it also reduces a pain in a part of my face just above a tooth root so that might be connected as less face pain less tinnitus both react on dexamethasone.

As for those who think that your case is due to chronic decades age I doubt it. Retigabine made my tinnitus worse and rapidly and I took it 2 months after I got tinnitus.

My opinion is that retigabine is too much of a shotgun drug and for some it works good for some it does not, kinda like with what this drug is originally made for, epilepsy. Some patients react really well but most do not.

Im sorry that Retigabine didnt work for you. It is interesting however that you took Retigabine even earlier after onset than Mpt. I wonder why this is, maybe it's acting differently depending on the cause of T or it is just too much of a wildcard because of the shotgun approach.

 

[undecided]

I just wanted to let you guys know that I'm on Retigabine since last Friday night (Oct 10).
Was on 3x50mg daily for 3 days. Since Tuesday, I am on 3x100mg daily.
I have a small supply of 100mg pills, this supply will only last until next Sunday (next Friday I'm tapering down to 3x50mg for a couple of days).

So far, I've had 2 almost T-free mornings (Wednesday and Thursday) but maybe they were just low T days, I don't know. T volume went a bit up as the day went by, but not a whole lot.
Today (Friday) the T is a little lower than the usual baseline, certainly not quiet, slightly intrusive.

I'll keep reporting as the days go by.
I've ordered another batch (2x84 300mg boxes), that will be a proper test at 300mg doses.

I am having zero side effects from Retigabine. But then again, I have had zero side effects from any drug I tried (betaserc, remeron, lyrica, stugeron, topamax, lexotanil).

 

[Rube]

I just wanted to let you guys know that I'm on Retigabine since last Friday night (Oct 10).
Was on 3x50mg daily for 3 days. Since Tuesday, I am on 3x100mg daily.
I have a small supply of 100mg pills, this supply will only last until next Sunday (next Friday I'm tapering down to 3x50mg for a couple of days).

So far, I've had 2 almost T-free mornings (Wednesday and Thursday) but maybe they were just low T days, I don't know. T volume went a bit up as the day went by, but not a whole lot.
Today (Friday) the T is a little lower than the usual baseline, certainly not quiet, slightly intrusive.

I'll keep reporting as the days go by.
I've ordered another batch (2x84 300mg boxes), that will be a proper test at 300mg doses.

I am having zero side effects from Retigabine. But then again, I have had zero side effects from any drug I tried (betaserc, remeron, lyrica, stugeron, topamax, lexotanil).

Awesome news did you mean you started on October 3? . I wish you have success with it, please do keep us updated.
how long do you plan to stay on the med? Also where did you order from?

 

[theekarwash]

The last time I went to my doctor asking for retigabine he said he thinks it would actually make my symptoms worse. What can I say to him to make him believe it will (probably) help in some way?

 

[111]

Another company looking into a similar style of medication as 063, and they are also improving a trobalt style compound as well, to improve its safety and to reduce it to one a day dosing, the more that get involved the better the outcome.

http://knoppbio.com/research/show.php?2

And this companies aim is below

Knopp Biosciences seeks to discover, develop, and deliver breakthrough medicines for urgent unmet medical needs. Our goal is to accelerate and advance treatment, change the course of devastating diseases, and improve the lives of patients and their families.

 

[Zimichael]

@Zimichael i hope your urine wasnt red was it?
I hope we see less of these side effects with AUT00063.

Rube...No, urine is a designer shade of pastel Marigold Maiden, ideal colour for that nursery wall or kitchen nook.

Morning greeting = a nice medium-pale yellow toilet bowl

I notice the country scent of delicate apple esters and spring-time orchards is decreasing as dose goes down.

Am now on second day of 100/100/100 mg = 300 mg total/day...Tomorrow I go to 50/50/50 = 150 mg total/day. Fast taper is giving me some headaches in morning, and I don't get headaches. They are not my thing in life...But no big deal compared to say, living in Syria right now.

@Hengist ...good to know you are still alive and kicking plus some relief from the Dex'. Sure implies an "inflammatory" component somewhere. First suspect is the tooth thing (or did you get that taken care of???). Second thought is that your are 'short term tinnitus' [since 8/7/14] and there is the "acute corticosteroids" approach.
Mmmmmmmmmmmm...

@undecided ...good luck, and sounds like maybe you are getting some 'effects' fast, as with others. Again...your T less than "one year".
Mmmmmmmmmmmm... Come on, any other long term T folks out there willing to give Retig. a go???!!!

Best, Zimichael

 

[Rube]

Another company looking into a similar style of medication as 063, and they are also improving a trobalt style compound as well, to improve its safety and to reduce it to one a day dosing, the more that get involved the better the outcome.

http://knoppbio.com/research/show.php?2

And this companies aim is below

Knopp Biosciences seeks to discover, develop, and deliver breakthrough medicines for urgent unmet medical needs. Our goal is to accelerate and advance treatment, change the course of devastating diseases, and improve the lives of patients and their families.

exciting stuff for sure. they are located in Pittsburgh. They are targeting kv7 as autifony is targeting kv3. they are in preclinial trials so still have a way to go.
i wonder if any more companies are going to go public in this same field, there is a ton of money to be made....

 

[Zimichael]

...i wonder if any more companies are going to go public in this same field, there is a ton of money to be made....

@Rube...(and anyone else on this track) see my new post in 'Support'. Zim'

 

[Martin69]

Mmmmmmmmmmmm... Come on, any other long term T folks out there willing to give Retig. a go???!!!
Best, Zimichael

It is not available in Germany. :-(

 

[mat]

@ martin69 so we can get i from netherlands belgium or so maybe?

 

[undecided]

Awesome news did you mean you started on October 3? . I wish you have success with it, please do keep us updated.
how long do you plan to stay on the med? Also where did you order from?

Yeap, correct, I started Oct 3, not Oct 10.
When my new order arrives (in a couple of weeks most probably, Royal Mail and the Greek post office system are completely useless), I plan to stay on the med for a couple of months.
I didn't order Trobalt myself. I got it from an old friend in the UK after I sent him a translated prescription from a Greek neurologist. He bought it directly from a pharmacy I believe, then he just packed it and posted it back.

(No problems with the customs office, x-rays, or anything of the sort, if anyone is wondering)

 

[SteveToHeal]

Yeap, correct, I started Oct 3, not Oct 10.
When my new order arrives (in a couple of weeks most probably, Royal Mail and the Greek post office system are completely useless), I plan to stay on the med for a couple of months.
I didn't order Trobalt myself. I got it from an old friend in the UK after I sent him a translated prescription from a Greek neurologist. He bought it directly from a pharmacy I believe, then he just packed it and posted it back.

(No problems with the customs office, x-rays, or anything of the sort, if anyone is wondering)

Amazing news! I hope you get more and more relief and zero side effects remain.

 

[Martin69]

@ martin69 so we can get i from netherlands belgium or so maybe?

I don't know if you can use a German prescription for a drug that is not available in Germany and then cross the border buying it there. I would know the right doctors here in Germany (for example a Neurologists or my GP) for perhaps getting a prescription. But I guess, getting the drug is not so easy. :-(

According to http://www.ema.europa.eu/ema/index....news_detail_001802.jsp&mid=WC0b01ac058004d5c1, it is available in these countries:

The medicine is available as tablets in the following Member States: Austria, Belgium, Bulgaria, the Czech Republic, Denmark, Estonia, Finland, France, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Romania, Slovakia, Slovenia, Spain, Sweden and the United Kingdom.

 

[SoulStation]

Rube...No, urine is a designer shade of pastel Marigold Maiden, ideal colour for that nursery wall or kitchen nook.

I notice the country scent of delicate apple esters and spring-time orchards is decreasing as dose goes down.

Am now on second day of 100/100/100 mg = 300 mg total/day...Tomorrow I go to 50/50/50 = 150 mg total/day. Fast taper is giving me some headaches in morning, and I don't get headaches. They are not my thing in life...But no big deal compared to say, living in Syria right now.

@Hengist ...good to know you are still alive and kicking plus some relief from the Dex'. Sure implies an "inflammatory" component somewhere. First suspect is the tooth thing (or did you get that taken care of???). Second thought is that your are 'short term tinnitus' [since 8/7/14] and there is the "acute corticosteroids" approach.
Mmmmmmmmmmmm...

@undecided ...good luck, and sounds like maybe you are getting some 'effects' fast, as with others. Again...your T less than "one year".
Mmmmmmmmmmmm... Come on, any other long term T folks out there willing to give Retig. a go???!!!

Best, Zimichael

Hey Michael---I just sent my RX into blueskydrugs for my next batch. I was thinking to myself... mmm were you the only one in the "Trial" who used the canadian pharmacy system? Just a crazy thought but if you were maybe there's the possibility that the stuff isn't "pure"...IDK just thinking out loud...

 

[SoulStation]

The last time I went to my doctor asking for retigabine he said he thinks it would actually make my symptoms worse. What can I say to him to make him believe it will (probably) help in some way?

Did he say why? I'd be curious to know.

 

[theekarwash]

Did he say why? I'd be curious to know.

I think he grouped the vertigo side effect with tinnitus caused by meniere's because he gave me serc instead. I'm not sure to be honest though, he didn't say.

 

[raymundo2245]

Where can you get this treatment, sounds interesting, i wentto a loud place to eat last night, texas game was on loud and ob my God, this noise went high up, anybody knows if it will decrease i. Several days or did i mess up by going there, im very sorry i went there , now i have no doubt this was noise induced, i was very doubtful, not any more, anybody?

 

[rtwombly]

Where can you get this treatment, sounds interesting, i wentto a loud place to eat last night, texas game was on loud and ob my God, this noise went high up, anybody knows if it will decrease i. Several days or did i mess up by going there, im very sorry i went there , now i have no doubt this was noise induced, i was very doubtful, not any more, anybody?

Retigabine is a prescription medicine for controlling epileptic seizures. Since it hasn't officially been tested on humans for tinnitus, it's hard to get, but if you have a sympathetic doctor you may stand a chance.

 

[Telis]

The last time I went to my doctor asking for retigabine he said he thinks it would actually make my symptoms worse. What can I say to him to make him believe it will (probably) help in some way?

He might be right...only a handful of people have tried this for tinnitus.

 

[jazz]

Dear Zimichael i'm sorry for you. I had to stopped trobalt because the side effects on my kidney was returning. Now i'm on HI-FU with Dr. Jeanmonod. Hoping...

Keep us posted, please! We should start a new thread on it if you go!