Retigabine (Trobalt, Potiga) — General Discussion

[amandine]

@rtwombly

BTW, if anybody is interested, I learned a bit about retinal pigmentation from my optometrist that I can share. Ask on here if you want to hear about it.

yes please can you share what you have learned re the retinal pigmentation....thanks!

 

[Christian78]

update:

i am currently on 1200mg, doing 300mg 4 times a day. i think i am having to take a higher dose because of my body weight. i feel as though i have gotten used to the drug, so the side effects are not bothering me as much. i have very rarely experienced H since i started this trial, which i would consider half the victory. although i get periods of near silence, i am also getting a few days (1 out of every 5-6 days) where i can hear my tinnitus for most of the day. on the days when i do have my tinnitus, the overall volume is about half what it was, and it has purer tones. i have had many more days of near silence though. i am at my wits as to what could cause the cyclicality of tinnitus, the random spikes, which would describe my tinnitus since it began (i know many of you have the same kind of tinnitus). my current theory is that sleep has a lot to do with it, and it too (sleep) is largely a mystery as well. the combination of this drug and tinnitus has made this connection a lot clearer to me. brain waves are a topic i will explore in the future, and that might have something to do with it (oscillations). i have another month on this drug and we will see what happens, i still have hope that it will smooth it all out to (near) silence

just one note on dosing. i think it is possible, especially for those that work, to take what i would call a hatchet dosage pattern. take light dosages during the work week, and ramp it up on the weekends. i think @tomm is doing something like this so i hope to see how he is doing.

@Christian78 my friend, how is the taper down going?

I was tapering to 200 mg x 3 and i went terribly worse so i went up on 300 x 3

my doctor advised to try 2-3 weeks 1200/day. So I will do that. Tapering is not option when i am parents. If i am going to go near suicide then I dont want people to see me in agony. And I wanted to tapper down to zero to see effects...

 

[TomKA]

@Christian78
Can you explain if your terrible T at 200mg x 3 is worse than before taking Trobalt? As far as I remember nobody had strong worsening of T after tapper down, maybe worsening of H for some days. Only the one guy from Switzerland who lost T during Trobalt said after some weeks when T came unfortunately back it was a little louder than before.

I got my prescription 2 weeks ago and my local pharmancy is importing Trobalt for me to Germany (not available officialy here any more), 300 mg tablets are already on stock, the starter pack is still missing.

I waited a bit to see more info from long term users and T state after tappering down. Even if it does not work long term for everyone after tappering down I will try this, but not if T is getting much worse after discontinuing Trobalt.

 

[Philemon]

update:

i am currently on 1200mg, doing 300mg 4 times a day. i think i am having to take a higher dose because of my body weight. i feel as though i have gotten used to the drug, so the side effects are not bothering me as much. i have very rarely experienced H since i started this trial, which i would consider half the victory. although i get periods of near silence, i am also getting a few days (1 out of every 5-6 days) where i can hear my tinnitus for most of the day. on the days when i do have my tinnitus, the overall volume is about half what it was, and it has purer tones. i have had many more days of near silence though. i am at my wits as to what could cause the cyclicality of tinnitus, the random spikes, which would describe my tinnitus since it began (i know many of you have the same kind of tinnitus). my current theory is that sleep has a lot to do with it, and it too (sleep) is largely a mystery as well. the combination of this drug and tinnitus has made this connection a lot clearer to me. brain waves are a topic i will explore in the future, and that might have something to do with it (oscillations). i have another month on this drug and we will see what happens, i still have hope that it will smooth it all out to (near) silence

just one note on dosing. i think it is possible, especially for those that work, to take what i would call a hatchet dosage pattern. take light dosages during the work week, and ramp it up on the weekends. i think @tomm is doing something like this so i hope to see how he is doing.

@Christian78 my friend, how is the taper down going?

Hey Locoyeti and others trialees :

I've been to 1200mg a day (400x3) for 4 days 'cause i was also concerned about my bodyweight and increasing dosage but i stopped ... reason is quite simple : with 400 TID I also had silence experience (T loudness= 0.05 or 0.1/10) but i also got a lot of variability, meaning that during the afternoon, or at night i could have T= 2/10 or 3/10, so on average it was not better ... today is my first day with 300mg TID and my T is much more stable on average (0,5/10) I don't know why, and even some reactivity to noise exposure (i had a bad experience with a baby screaming close to my ears this afternoon, i'll tell you more in a few days maybe) doesn't last more than 1 or 2 hours, such that it goes back quickly to baseline (0,5) ... only my own experience, but i won't go back to 400mg TID I think ... but everybody is different ;-)
Hope this helps

 

[Albertus]

Hello , tomorrow I start my treatment with a dose of RTG 100mgx3 / day . Took three months suffering tinnitus in both ears developed by taking antidepressants (Remeron and Paxil) . These modified some neurotransmitter or potassium channel in my head and then I suffer from this disease . I have high hopes RTG that took very little time experiencing this and that takes effect giving himself just where my problem comes in particular. I hope to reopen those channels and heal God willing . I 'll keeping informed. Excuse my English , I can read you and understand you perfectly but to express need to use a translator. I hope we can all enjoy the silence again . Ahh ! Tell them I started making an analytical blood and urine tests to monitor renal function. Regards , see you around here !

 

[john2012]

from what i read in the european journal of pharmacology paper (Calvin Wu,2014), the dosage needs to be a minimum of 1200 to work effectively to shut down tinnitus.

maybe well see better results from more people at the therapeutic dosage.

 

[undecided]

lol, a minimum of 1200mg... Hemodialysis, here I come.

 

[Albertus]

I think that higher doses of 1200mg would put out more things that tinnitus ... If @Mtp got beat your tinnitus with 300mgx3 / day , I think the appropriate dose depends on each person , so it is necessary to go slowly increasing . Besides the prospectus indicates 1200mg / day as the highest dose.

 

[RaZaH]

Quick reality check .. This does work for a few hours , no doubt about that but so does other stuff.
The odds of this curing anyone are astronomical in my opinion.
Sure is nice experiencing silence though.

 

[Christian78]

@Christian78
Can you explain if your terrible T at 200mg x 3 is worse than before taking Trobalt? As far as I remember nobody had strong worsening of T after tapper down, maybe worsening of H for some days. Only the one guy from Switzerland who lost T during Trobalt said after some weeks when T came unfortunately back it was a little louder than before.

I got my prescription 2 weeks ago and my local pharmancy is importing Trobalt for me to Germany (not available officialy here any more), 300 mg tablets are already on stock, the starter pack is still missing.

I waited a bit to see more info from long term users and T state after tappering down. Even if it does not work long term for everyone after tappering down I will try this, but not if T is getting much worse after discontinuing Trobalt.

if i would stop with drug i would know. i know i took larger and larger dosage to get same effect but severe side effects...

 

[SoulStation]

BTW just an FYI I spoke with my urologist and he told me that the number in my blood which I was concerned with was nothing to really worry about (the bun to creatinine ratio). In my case it was higher then the reference range but he say it varies a lot based on hydration and a few other factors. But this drug still gives me hand tremors, makes me dumb, and screws with my whole body. I've also gained about 15 lbs . It also really sucks the come off of it. I however feel like the effect of this drug has been totally skewed by our trial.

 

[valeri]

Is it just me or others feel hopeless reading this thread in the last few weeks?
I went from full of hope to some sort of despair that our only possible relief is really not that at all

 

[Juan Carlos]

I have this effect usually and esp on quite days. It will slowly creep back and gets louder and louder as time passes in quite places or when trying to sleep.
its jst that subconsously we start to give the T more attention.

By retard u mean slow/sustained release version. many people here commented abt getting high enough dose of this to supress the T at an instance. Not slowly dampening it. I remeber reading like break open the door instead of slowly nudgeing the door.

Since u are already on the drug maybe it would be best u avoid total silence for week and stop listening for the T. To help keep the brain activity towards the T low. I think no harm in trying this, and for sure u will know if its placebo effect or not.

i know is better to not pay attention but belive me when u are on rtg wanna know the improvements. Specially on gong to sleep and wake up (all daytime i can't hear it)
This morning i woke up again so close to silence, and passed 4h since last pill. Im still feeling optimistic

By the way, yesterday I tried my own advice. To avoid the highness at work, insted of taking 200mg at 12h, I took 100mg at 12h and another 100mg at 13h, so I had less highness , but for more time. I will keep doing this way just for work. Also on my second round is on my launch time so i enjoy a lot having launch while high )

I still try to go early to bed. I think the improvements are made at night because everyday i wake up near silence. On daytime surrended by lound sounds not allow me to get better i think. When i go to sleep i hear it still, yesterday was quiet, almost masked by tv on low volume

 

[Juan Carlos]

Is it just me or others feel hopeless reading this thread in the last few weeks?
I went from full of hope to some sort of despair that our only possible relief is really not that at all

not going into the discussion again if its a cure or not. Nobody knows and for sure the answer is not a YES either a NO.
Putting some logic on it:

• How can someone get Tinnitus ? many ways, but easiest: accoustic trauma: long exposure to loud sound.
• Whats the opposite of the stated above? silence: induce silence. The only way we know today for that is called RTG

So I just know that we are on the right track, with no idea of how long of silence we need to get it back (for mpt was 2 months maybe). Maybe for someone needs 12 months, on his case would be better to wait for AUT63

When we are exposed to loud sounds, the T get louder right ? when we wake up (after long time on silence), most of us (me included) have lower T
RTG makes us hear more silence, fore sure we know its a relief fot T and H
Logical, thats my point, brain plasticity

 

[xanaxvictim]

Conclusions:

• Despite a drug being potassium channel opener, it has to be very precise to work.
• Flupirtine doesn't act on any sub unit related to T. ( So no possible impact)
• Retigabine acts on interspike interval, meaning less T. spikes and it can possibly repolarize the action potential for some people. But the sub unit range is too wide with numerous side effects. (so it can work to stabilize T. and decrease it to some extent, but is not specific enough to be viable.)
• AUT00063 acts directly on the repolarization and is much more precise, so it's a viable solution providing it works as expected

Interesting, it seems that a number of volunteers who are trying Retigabine on this site also report an effect on T spikes.

 

[xanaxvictim]

Well, not all experiments/trials. The trial for DBS actually has a requirement for T older than a year.

According to clinicaltrials.gov most rTMS trials require 6+ months after onset, some 1year+, that's why my Dr. refused to let me try the rTMS trial he's currently testing (the rTMS pilot trial my Dr. currently conducting is not on the website)

 

[sticky]

@valeri,

What are you expecting from this drug? I believe this is promising. Don't get deflated!

It s not a cure in anyway shape or form but something in this drug "appears" to be treating people. (Sorry for the edits, typing on my phone....arrrgghh)

 

[rtwombly]

On retinal pigmentation, I found out a little about how it operates in the eye. Not anything you can't find elsewhere on the internet most likely, but a good layman's explanation from a knowledgeable doctor.

The rods and cones of the eyes are filled with pigments that constantly "get blasted" by light. It's these changes in pigment content that the brain interprets as changes in contrast and color. A layer of tissue behind the retina constantly pumps new pigment into the rods and cones to replace what was lost through ordinary use.

The concern is that there is less density to the pigment in scans of people who have been on Retigabine long-term. But according to my doctor, the technology to scan that density is itself very new. He wasn't sure anybody in the state has it, though the big Universities probably do. Because it's new and not widely available, there's not that much data to go on, so it's hard to know what the standard should be.

The doc gave me a battery of functional tests, to set a benchmark on how my eyes perform. I feel pretty good about that symptom potential being a reasonable risk to take short-term.

 

[RaZaH]

I guess all we can do is wait for more people to taper down and finish their 2-3 months of Retagabine.
Until then , all we know is that it does work temporarily , I guess we can all agree on that ? Right ?

 

[PhilB]

Thanks for that clear explanation @rtwombly. The condition most commonly associated with retinal pigmentation problems is Retinitis Pigmentosa. RP is a hereditary degenerative condition whereby abnormalities in the photoreceptors (aka "rods and cones") cause progressive sight loss. Look it up on wikipedia if you want to know more.

The most common manifestation of RP is restricted peripheral vision or "tunnelvision". I happen to know a little about RP because my late father suffered from it, though thankfully I do not appear to have inherited the gene. What I do know is that if the retinal pigmentation change associated with prolonged usage of Retigabine is in any way similar to RP, then it should not be regarded as a minor inconvenience. RP can be very serious indeed.

 

[SoulStation]

I'm pretty much done and tapered off and I don't feel like it really did anything long run(and please before people go saying that I didn't go above 600 mg take in mind I am aware that the higher doses are more therapuetic but I didn't have the supply to maintain that or the evidence that. It will actually work). I'll say it in big letters and this is JUST my opinion(even though this drug is effective in t reduction)...

Has anyone thought about what this drug does as far as reinforcing overly monitoring your T? I know for me I was constantly thinking "is it working"? If it was really low after for a while I'd be clicking my heels but if it wasn't I'd be like "WTF?" I feel like this "roller coaster" working for a few hours then coming down from the high and having interdose sounds etc...is a pretty contradictory process in my opinion and further more almost a vicious cycle.

And then there's the adverse effects (side effects) which make it even more fun ...

 

[RaZaH]

Hmmm, not for me , I have come to terms with having T , I just need it to stop screaming at me.
So a reduction for me is a godsend and I really dont feel the need to monitor it.
One 100mg pill obliterates my central/brain T and I am satisfied to be honest , bit of music going and Im good.
Now , if I could just maintain that without frying my brain , I would eat this like M&M's

I get what you are saying though.

 

[SethL]

@SoulStation
I see your opinion on this. I haven't started RTG yet but I'm following every post on this thread, which has me thinking about my T constantly. I haven't even started the trial yet but just thinking about it causes me to focus on the sound and monitor it for fluctuations etc.

I don't know about others, but my local pharmacy here in California charges between $600-$800 for me to get enough for a 2 month trial. OUCH!

A couple of weeks ago I stopped looking at TT and after a week felt like I was hearing and listening to my T much less. My T is (thankfully) not unbearable and with some background noises is mostly masked. I'm really wondering if there is something to this habituation thing, especially for those of us that have "minor" T.

It is the question in the back of my head of "what if" that keeps me thinking and desiring to try out this drug. I'm just about ready to give it a try just to satisfy my curiosity and if/when it doesn't work I can finally just move on.

 

[RaZaH]

I agree, its sometimes hard to tell whether you come here more often when your T is bad or the other way around.

 

[OddV]

I agree, its sometimes hard to tell whether you come here more often when your T is bad or the other way around.

Don't want to derail the thread, but yep, I've had this thought. Of course, my T is still fresh and I'm pretty much stalking the site right now. Pretty sure TT is going to get a restraining order against me soon.

 

[Christian78]

@Christian78
Can you explain if your terrible T at 200mg x 3 is worse than before taking Trobalt? As far as I remember nobody had strong worsening of T after tapper down, maybe worsening of H for some days. Only the one guy from Switzerland who lost T during Trobalt said after some weeks when T came unfortunately back it was a little louder than before.

I got my prescription 2 weeks ago and my local pharmancy is importing Trobalt for me to Germany (not available officialy here any more), 300 mg tablets are already on stock, the starter pack is still missing.

I waited a bit to see more info from long term users and T state after tappering down. Even if it does not work long term for everyone after tappering down I will try this, but not if T is getting much worse after discontinuing Trobalt.

well i wonder what to say.

If you would use your brain then tell me how can i know is it worse, i need to tapper permanently. My recent posts showed i had ok effect only on 200 mg and then it became less effect.

Name people who did got better from trobalt.

Read what people say, and ask @locoyeti

 

[RaZaH]

@Christian78
"ok effect "
I get almost complete silence on 1x100mg , did you ever get complete silence or near that on your travels through Trobalt land ?

 

[TomKA]

@Christian78
You already answered my question yesterday, maybe you forgotten.

You wrote on Thursday "I was tapering to 200 mg x 3 and i went terribly worse so i went up on 300 x 3"
This was after your user report on 1. of December in which you wrote "250-300x3" and on 2. of December "300-300-350". To my understanding (English is not my native language too) you tappered down already a bit and after worsening gone up again.

Anyway I prefer not to offend people in telling them to use their brain, which I truly did, and followed this thread from the beginning. We are all sitting in the same boat here more or less... If I missunderstood you or the dosage you took I'm sorry.

We don't know what this drug can cause in our brain, if it lowers T temporary/permanently it can also cause a worsening which goes over baseline T before taking Trobalt (after tappering, while tappering down or even under same dosage after longer use) - so this question seems appropiate for me.
The more case details we know the better everyone can judge on his own if he wants to take the risk.

Thanks for sharing your results with us.

 

[Zimichael]

I agree, its sometimes hard to tell whether you come here more often when your T is bad or the other way around.

After 58 years this become irrelevant. Makes no difference at all...However, if new to T it may indeed focus you more on the beast. With time when T becomes your "silence equivalent" it just is what it is. (It's the H/sound reactive-T that is the biggest bastard on the block and that is totally unaffected by looking at tinnitus information, in relative "screaming silence", at home).

Meanwhile, for those testing the Trobalt, try and get an "subjective objective" marker of your own...like whatever sound you know did not mask it before but now does. Or volume level on TV (which for instance I had to reduce from always setting at 45-50 on movies for my set, then down below 18 even was still triggering my H on Trobalt...that is a "measure").

Best, Zimichael

 

[john2012]

@Christian78
I get almost complete silence on 1x100mg

wow, trobalt sounds like a miracle drug

+ it's working on tinnitus which is OVER 2 years old.

are there any other similar cases?

note: 100mg is low dose. maybe a higher dose would make effect last longer/even permanent?