Retigabine (Trobalt, Potiga) — General Discussion

You are welcome. I just thought I'd inject a little reality strictly from the historical perspective.

People have been raving about various tinnitus drugs for at least thirty years now. No reason not to rave about this one if you so choose.

Dr. Stephen Nagler

 

I would be interested in this, thanks!

 

It should help your hearing acuity, if anything. But I am interested in this as well.

For those asking if this drug is anything we should care about, any different from any other drug that has gone by the wayside: There have been other drugs that have been tried for tinnitus and they've all helped one or two people hugely (like the one guy who was cured by Remeron) or a whole lot of people slightly (like the combination of niacin and bonine that I think may have helped my wife get over a spike). You can read about them all online.

But Retigabine is different in its mechanism of action to all the drugs that have been tried previously. It's not like we're trying Bayer aspirin versus Walgreen aspirin. We're trying a novel approach to tinnitus. There's no reason to dismiss its potential just because other drugs have failed. That would be like pitching a rock into a lake and concluding that everything you pitch into the lake will sink. Rocks sink. Wood floats.

The plain fact is, we've had very few people who have been able to tolerate Retigabine well enough to get to 900mg/day and hold (or exceed) that dosage continually for a course of months, which is what cured Mpt. We've had some people get there and have to back down, get close and run into supply problems, etc. It's not time to announce results yet. Individual trials are ongoing.

Of all those drugs that have been tried, has any had a better success rate in changing people's perception of tinnitus than Retigabine? I don't think anything that any user from this forum has tried has been able to cut 50% of user's symptoms by 50% or more. Even taking into consideration the small sample size, I think this thread has had more success stories than any other. You've got to define success, though. Does success mean low side effects? Does success mean the drug is affordable and easy to get? Does success mean everybody has the same experience? By those measures this is the worst drug ever! But if success means, "tinnitus is significantly attenuated at therapeutic dosages for the majority of trialees," it's a winner, and a bigger winner than I've personally read about. You can add that side effects have so far been temporary and generally improving.

Sure it's all broad-brush stuff, but despite the passage of months we're still in the early days here. Looking for how many people have been cured since July gives a totally false picture of Retigabine's efficacy and potential. The User Experience thread is where to look for answers (or at least the right questions).

 

Why should I go to 1200`?

 

Why you dont buy it from some other member?

 

entire September and October, bit before those 2 moths and now is Nov 15 ca 3 months.

from all side effects never had hearing problem. Amnesia, drunk walk, dullness, speech problems and vision yes, never hearing, there can happen uncontrolled sneezing of feeling of sneezing , hickaps that are intrusive 15 min, yawning and sudden stop of reflex to swallow.

 

Because 1200mg is the dose which normalises the state of the hyperactive neurons.

 

oh, really? where did you got that information. MPT said he was on 300?

I had side effects like crazy man on 300, i was lost but literally like a fish on a dry, my eyes were like glury i could not se nothing. And it say in envelope 300-400mg max.

I took by incident 300mg and then i forgot did i took it i wait 2h and took 200. And I had to call ambulance. My hear was jumping, i could not breath normally, i was lost, i did not know where i am. eyes totaly lost.

Before when i would take a pill i got a bit exited in start, after that accident i was taking pill and feel tired dead sleepy depressed neurosis NIGHTMARES bad sleeping pain in spine.

Tell me please where did you find 400mg?

 

If we agree, I can go to parents, buy you 6 packs of 100, return, we meat, there is ships going Gbg-Hamburg, or flights to Germany by Lufthansa, 18 euro to Bremen return ticket and so on...

Price you are paying are going to be raised ca 10% and most important price is to be friends.

 

It's messing with my vision, I can tell you...

 

i rather say, it kills all brain activity that is not automatic like heart and breathig at that dosage.

Please provide me document where you read it.

 

Hi everyone,

I’m new on this board and i just introduced myself here (u’ll find some informations about me and my T, if u’re curious about) :

https://www.tinnitustalk.com/threads/hi-everyone.6858/

First, i would like to thank all of you on this thread for all the valuable informations i got from u about retigabine, and tinnitus in general

A few days ago, i managed to come back from Italy with 10 boxes of 84x100mg of Trobalt (i’m from France, in a place not that far from the italian’s border) … thanks to viking who talked about how it is somehow possible to get Trobalt there (to be honest, i think i’ve read 80% of this thread) … in fact, the italian law says u need a prescription to get it, but some pharmacists don’t seem to give a shit about that and will sell it to you (to make money i guess, each 84x100mg box cost 45 euros) … i managed to find one of those pharmacists, so here i am on this thread … i just started today (100mg TID), so far nothing special to report of course

I plan to increase by 100mg/day each 4 days or so (i initially planned to increase 150 mg/day each week, but as i’ve read that cutting pills is not advised for many drugs, and i only have 100mg pills …), while i’m still hesitating with the fast taper up … if u don’t mind, i would enjoy to hear suggestions about that … especially from you @locoyeti … I know ur opinion about taper, but I would like to ask u more about … I’ve seen the post where u quote the paper about retigabine dosage … maybe I missed the point but, to my understanding, the paper is more about dosage we need to reach rather than about the kind of taper by itself, am I wrong ?? u also wrote ‘I have a (speculative) concern that there may be some time-dependent homestatic response at the cellular level that is working against the drugs effects, and a fast taper up might counter-act that more effectively’ … if u don’t mind (and if u have time for this), I would really enjoy if u could elaborate a bit more, more precisely what kind of speculations u have about that …’cause I’m still hesitating about the kind of taper up I’ll follow … thanks. anyway I think I have enough pills to re-start the experience with a fast taper up if I’ll still feel no effects in a few weeks

@Zimichael I saw ur last post about all the known trialees on retigabine and status update, I think we could add Matteo Piatti as well and ask him for update (he was talking about some improvement in his last post but hasn’t given any news since then)

Ok, I will soon fill in the form for retigabine’s user and of course keep u posted about my trobalt experience. I hope it will work, at least to some extent, and I’ll keep fingers crossed as well for all the other trialees, hope they’ll get some lasting improvements.

 

come on guys,
all we need is a couple of chronic cases cured
and the whole country will be trying it
good luck everybody

 

Sign me up for that.

 

@Philemon ...Good point about Matteo Piatti, way back on page 39! However, he only had 6 total posts and no activity for a long time, thus...Ummmmmmmmmmmm??? We had another guy who said he was trying Trobalt but vaporized with very little history or potential credibility.
So at this point I am not going to edit that informal list. However, Matteo is welcome to let us know he is still alive and well, and that the his Hong Kong banana experience came to fruition.

Locoyeti and I share similar views about the fast taper protocol, though he is more "rapid" than me I'd say. The big question from my take is if you have any unknown, latent susceptibility to seizures (that you may not know about because they have never happened in your life), then you mess with a high octane drug that "activates" or "de-activates" that neurology....well????? Sometimes goofy things can happen with meds.
It's just worth being aware of IMHO, as well as the other standard's like urinary retention and so forth.

I'm sure Locoyeti will chime in soon too.


Best, Zimichael

 

You're chronic, why don't you try it?

 

Sorry for the "silly" question but: What is a chronic case???? Is it a someone who has had it for a long time -or- how loud/bad/severe you have it??

 

I think the general rule of thumb is >12 months.

 

Oh my. I guess I'm chronic....(how horrible that word sounds) sniffles :'(. 3 long years.

 

It is hard to cure neurological disorder, better said is to controle it and menage it.

But medical don't let us write that tinnitus is disease.

We have to fight that tinnitus is DECLERED desease. And then get a tretment for it.

IF SOMEONE KNOW HOW TO GET TO DECLARE IT DESEASE WE SHOUD START A FIGHT. WE JUST SIT IN HOME. INSTEAD WE SHOULD GO TO COURT OF HUMAN RIGHTS AND FIGHT THAT IT IS DECLERED. AND THEN EVERY DESEASE HAS TO BE TREATED. inventing medication will go faster for disease, not simptm.

 

@Christian78

Agree with you but no matter how many times this issue is raised nothing gets done.
We t sufferers are stuck with an old school ideas about tinnitus and medical world is totally ignorant of our suffering

 

Those of us who don't habituate within 2-3 years must do it. Yes it is hard, but necessary.

 

I wish there is an ABC to that process!
It would be easier!

 

@Christian78
I AGREE!!!!!!!!!!!!!!!!!

 

Don't know if this has been posted earlier.

http://www.nature.com/neuro/journal/v15/n1/abs/nn.2985.html

Abstract:
"Mutations inactivating the potassium channel KCNQ4 (Kv7.4) lead to deafness in humans and mice. In addition to its expression in mechanosensitive hair cells of the inner ear, KCNQ4 is found in the auditory pathway and in trigeminal nuclei that convey somatosensory information. We have now detected KCNQ4 in the peripheral nerve endings of cutaneous rapidly adapting hair follicle and Meissner corpuscle mechanoreceptors from mice and humans. Electrophysiological recordings from single afferents from Kcnq4−/− mice and mice carrying a KCNQ4 mutation found in DFNA2-type monogenic dominant human hearing loss showed elevated mechanosensitivity and altered frequency response of rapidly adapting, but not of slowly adapting nor of D-hair, mechanoreceptor neurons. Human subjects from independent DFNA2 pedigrees outperformed age-matched control subjects when tested for vibrotactile acuity at low frequencies. This work describes a gene mutation that modulates touch sensitivity in mice and humans and establishes KCNQ4 as a specific molecular marker for rapidly adapting Meissner and a subset of hair follicle afferents."

 

@Christian78
According to dictionary.com (to mention only one dictionary, but I can check others)

disease
[dih-zeez] IPA Syllables

• 
  noun

1.
a disordered or incorrectly functioning organ, part, structure, or systemof the body resulting from the effect of genetic or developmentalerrors, infection, poisons, nutritional deficiency or imbalance, toxicity,or unfavorable environmental factors; illness; sickness; ailment.

Any person who has Tinnitus HAS a disordered or incorectly functioning organ, part , structure or system of the body, therefore HE HAS A DISEASE! Therefore T sufferers are suffering from a DISEASE!

Whether that organ, part, structure or system of the body is the external ear, middle ear, inner ear, auditory nerve, brain stem, auditory system, muscles, or any another part of the body, the T sufferer has a DISEASE.

A healthy person doesn't have Tinnitus. According to simple logic, if a person has Tinnitus, he is not healthy, he has a disease, he is ILL.

The fact that doctors don't know WHICH is the exact part of the body that doesn't function correctly in each case is due to the fact that medicine is not advanced enough, and the fact that medicine is not advanced enough to identify the part of the body that doesn't function properly shouldn't lead to DENIAL (!!!!!) that the T SUFFERER HAS A DISEASE. That is extremely unethical on scientists/doctors' part.

So we have demonstrated that there is always a disease associated to each T case.
The demonstration that T sufferers have a disease is done.

(And it's not an ordinary disease, it's a disease that makes living resemble with hell (for some), a disease that is for some disabling, a disease that determines some sufferers to take their own lives!!! So the disease should be in the top of the most serious once and receive proper funds for research and the sufferers should be treated accordingly)

What are the problems left?
The disease doesn't have a name.
That is because the diseases receive names from the doctors/scientists and they didn't do that yet because they don't have enough information about the disease. A disease that exists for sure shouldn't wait for scientists to receive a name until they have enough information about it, which can take hundreds of years. We are living now. We don't have time to wait for scientists. Let us, the suffers, give it a name to the disease that surely exists.

Let's call it, for example, "Disease that causes tinnitus".
Is there a law that forbids us to do that? That we must work on. Here I think we should get organized and go to the Court for Human rights.

What do you say, T sufferers, do you agree so far?

Other problems: T rarely shows on tests. It is hard for somebody to prove he has Tinnitus. Sometimes it shows in EEG, sometimes in functional MRI. In my country of residence for example, there isn't a single functional MRI.

Oh, God, I get sick only when I think about that...

"I can't think about it now. If i think about it right now I'm gonna go crazy. I'll think about it tomorrow. After all, tomorrow is another day!" (or something like that) Margaret Mitchell

 

tinnitus isn't a disease it's brain music---

 

@lapidus

please can you translate what you have posted if you understand it. I dont understand it amd maybe others wont either.

@Christian78
@Dana

I completely agree with you. have been thinking the same lately.
Another recording going global from band aid to raise money for Ebola, which has killed 5000 and there is already a cure from what we have seen in the news reports. Chris Martin from Cold Play is taking part in the recording.
How come we cant push this so that part of the money raised can go to research and push it faster like autifony, our tt research on trobalt, or am 101......?
Court of Human Rights - yes!
Petition - yes!
We can get loads of signatures on a petition what with 5000 members here plus all the people they know with T plus family and friends plus other forums etc....
This is a global problem..
Many in the third world have it??? or not?
What happened to the single that Chris Martin produced for Tinnitus ressearch charity or did British Tinnitus Assoc simply soak up the money and put it all again to TRT or CBT?
Why can t he produce it again and put it out for Xmas or Easter or something?
There are many politicians with this ailment but they do nothing just like the celebs who have it.
Hell I bet the Queen of England and her hubbie have it as they are very elderly and use hearing aids but I bet they got treatment.
By the way, there were public information ads in the USA re noise and tinnitus.....in the fifites so 70 years ago. They just disappeared....why?
We can do something if we act together and pool our resources....otherwise we shall get nowhere and will still be repeating this same stuff in 10 years.....those of us who are still alive that it...

 

@Mpt

Hi - is your T still gone please?
Looks like trobalt may be the only choice in spite of side effects.
Did all your side effects go or were you left with any effects from the drug and did your T completely disappear or do you have it still if only very slightly?
Thanks for letting us know
be well

 

@Mpt
Tinnitus is the music played in hell, it's the soundtrack of hell.
Dear Mpt: if, with the help of a synthethizer, you could reproduce the music of your T and record it on a CD, how many CDs you think you could sell? Music is an art, it has to be beautiful, or at least appealing. T is not appealing.
The beautiful music that was composed on this planet, THAT is brain music.