Retigabine (Trobalt, Potiga) — General Discussion

[Danny Boy]

Keppra gave me side effects i can only inagine what trobalt would do to me.. My T has no control it keeps shooting up and increasing in volume every fkn week its hrs to even to even imagine it but it does idk why its hard to keep taking this.. I see how people struggle with one permanent spike on a long while now inagine me its every couple days it just reaches new levels i cant even hear background noises anymore can barely keep a conversation without my ears blasting out of my head and i mean blasting not barely popping out for air...i havent met no one single person in here with my exact symptoms they have severe t but its stable or react but comes down again as mine does not.. This is just too extreme..

Well, it's worth giving trobalt a go...If you can obtain that. Try it with keppra, as I do, it's more effective that way.

 

[Carm]

Keppra gave me side effects i can only inagine what trobalt would do to me.. My T has no control it keeps shooting up and increasing in volume every fkn week its hard to even imagine it but it does idk why its hard to keep taking this..

What have you got to lose?

You are hurting, you need to try Trobalt before thinking about any final measures. What did your doctor say?

 

[nills]

while I was on trobalt (I`m out of it because my doctor was obstructed to continue giving it to me by a neurologist friend of him) my H and the pain I had from loud noises like cutlery also went down a lot. to the point it didn`t hurt anymore. Now it hurts again being off RTG.

 

[Danny Boy]

What have you got to lose?

You are hurting, you need to try Trobalt before thinking about any final measures. What did your doctor say?

Issue with Geo is, that he fixates on the side-effects of any and I mean any drug to the point where he gets paranoid. To be honest, I was like that with trobalt and never took it for a few days had one massive spike and said, if I don't sort this out it will be the end of me. Took trobalt and don't regret it.

 

[Geo]

while I was on trobalt (I`m out of it because my doctor was obstructed to continue giving it to me by a neurologist friend of him) my H and the pain I had from loud noises like cutlery also went down a lot. to the point it didn`t hurt anymore. Now it hurts again being off RTG.

So ur doctor cut u off?? Did ur t increase to its regular baseline? Are u going to try to gt another way?

 

[Martin69]

I had two little bit milder days. Milder means just a buzzing head instead of 2-3 loud, high-pitched tones oscillating (my normal catastrophic T).

But today I woke up with louder T. Not catastrophic, but for me a 7/10 or 8/10. I decided taking my second Trobalt (took one some weeks ago without any effect). So I took one 100 mg and took a 20 minute shower afterwards (for relaxing and maybe a little bit residual inhibition). My T went down to a 2/10. Also I got somewhat a "high" feeling.
T came down to a buzzing head, but not very loud. I went outside to a football tournament (just watching). Was a little bit louder there. My T was easily covered and I forgot about it the one or other minute.

Now, 5 hours later, I am sitting on my balcony and my T is maybe on a 3/10, 4/10, maybe still a 2/10. Of course it still annoys me. I am exhausted, I am depressed and would like have it gone forever - who not?

So difficult to say what effect Trobalt has here. I will continue testing this the one or other day.

My opinion is that there are possible treatments with AUT00063, Trobalt or other brain drugs. The question is how high the price will be (side effects, dependence, tolerance). So let's hope there will be a cure or something close to a cure one day.

PS: My friend is travelling to Spain next week again. I could get as much Trobalt as I want. But I want taking it only on occasion. Most days I want going through this without meds (just Mirtazapine) towards habituation. On the other side I doubt someone could habituate to my catastrophic T.

PPS: My T was not caused by noise (although I have normal hearing loss in the high frequencies). Mine was caused by stress/anxiety. I am 100% sure my T sound is produced by the brain. All calming brain meds have a positive effect on my T. A huge dose of lorazepam would nearly kill it completely. My T is not tonal, baseline is more a buzzing head and oftentimes in addition high-pitched tones.

 

[Danny Boy]

I had two little bit milder days. Milder means just a buzzing head instead of 2-3 loud, high-pitched tones oscillating (my normal catastrophic T).

But today I woke up with louder T. Not catastrophic, but for me a 7/10 or 8/10. I decided taking my second Trobalt (took one some weeks ago without any effect). So I took one 100 mg and took a 20 minute shower afterwards (for relaxing and maybe a little bit residual inhibition). My T went down to a 2/10. Also I got somewhat a "high" feeling.
T came down to a buzzing head, but not very loud. I went outside to a football tournament (just watching). Was a little bit louder there. My T was easily covered and I forgot about it the one or other minute.

Now, 5 hours later, I am sitting on my balcony and my T is maybe on a 3/10, 4/10, maybe still a 2/10. Of course it still annoys me. I am exhausted, I am depressed and would like have it gone forever - who not?

So difficult to say what effect Trobalt has here. I will continue testing this the one or other day.

My opinion is that there are possible treatments with AUT00063, Trobalt or other brain drugs. The question is how high the price will be (side effects, dependence, tolerance). So let's hope there will be a cure or something close to a cure one day.

PS: My friend is travelling to Spain next week again. I could get as much Trobalt as I want. But I want taking it only on occasion. Most days I want going through this without meds (just Mirtazapine) towards habituation. On the other side I doubt someone could habituate to my catastrophic T.

PPS: My T was not caused by noise (although I have normal hearing loss in the high frequencies). Mine was caused by stress/anxiety. I am 100% sure my T sound is produced by the brain. All calming brain meds have a positive effect on my T. A huge dose of lorazepam would nearly kill it completely. My T is not tonal, baseline is more a buzzing head and oftentimes in addition high-pitched tones.

Try a higher dose of trobalt...100mg won't last long.

 

[nills]

I had two little bit milder days. Milder means just a buzzing head instead of 2-3 loud, high-pitched tones oscillating (my normal catastrophic T).

But today I woke up with louder T. Not catastrophic, but for me a 7/10 or 8/10. I decided taking my second Trobalt (took one some weeks ago without any effect). So I took one 100 mg and took a 20 minute shower afterwards (for relaxing and maybe a little bit residual inhibition). My T went down to a 2/10. Also I got somewhat a "high" feeling.
T came down to a buzzing head, but not very loud. I went outside to a football tournament (just watching). Was a little bit louder there. My T was easily covered and I forgot about it the one or other minute.

Now, 5 hours later, I am sitting on my balcony and my T is maybe on a 3/10, 4/10, maybe still a 2/10. Of course it still annoys me. I am exhausted, I am depressed and would like have it gone forever - who not?

So difficult to say what effect Trobalt has here. I will continue testing this the one or other day.

My opinion is that there are possible treatments with AUT00063, Trobalt or other brain drugs. The question is how high the price will be (side effects, dependence, tolerance). So let's hope there will be a cure or something close to a cure one day.

PS: My friend is travelling to Spain next week again. I could get as much Trobalt as I want. But I want taking it only on occasion. Most days I want going through this without meds (just Mirtazapine) towards habituation. On the other side I doubt someone could habituate to my catastrophic T.

PPS: My T was not caused by noise (although I have normal hearing loss in the high frequencies). Mine was caused by stress/anxiety. I am 100% sure my T sound is produced by the brain. All calming brain meds have a positive effect on my T. A huge dose of lorazepam would nearly kill it completely. My T is not tonal, baseline is more a buzzing head and oftentimes in addition high-pitched tones.

It does n`t work taking it occasionally like you imagine it will. This molecule has to enter the brain consistently and with gradually more and more to have best effect. 100 mg can give you a 20 minute high and relief but that is all ... and if you think of taking a 1 time 400 it won`t do much more than that for a few hours but you will be very dissorientated and high from it. imo not worth to use it like this really.

 

[Danny Boy]

It does n`t work taking it occasionally like you imagine it will. This molecule has to enter the brain consistently and with gradually more and more to have best effect. 100 mg can give you a 20 minute high and relief but that is all ... and if you think of taking a 1 time 400 it won`t do much more than that for a few hours but you will be very dissorientated and high from it. imo not worth to use it like this really.

The optimum dose is 400x3 a day, that's the recommend dose for tinnitus.

 

[nills]

The optimum dose is 400x3 a day, that's the recommend dose for tinnitus.

I know ... but if you take this once in a blue moon it will be a very unintelligent and unhealthy decision.

ps be careful how you state your words ... no one has ever scientifically agreed on the fact what is the `recommended dose for tinnitus` ... 3x400 is just the highest dose established by the manufacturer. Anything above that is outside their safety net.

 

[Martin69]

@nills @Danny Boy
Like others here I am only testing. User RaZaH also had success with taking it occasionally. My experience yesterday was maybe just coincidence. I do not plan taking 1200 mg per day with side effects. I need to function somehow. And yes, there is no "recommended dose for T".

Nills, why did the Neurologist stopped your doctor giving Trobalt to you? I guess he has the known concerns regarding side effects.

 

[nills]

The neurologist in my city only has 1 patient taking trobalt ... Trobalt is red flagged in europe meaning it can only be given when no other medicine works and all is tested - because of the nasty longterm side effects... the temporary ones are fine imo- atleast the ones I experienced (Did have more suicidal thoughts on it because now I stopped all of those are gone) ... now of course for tinnitus nothing else works! I know this, but my doctor was told if he would continue prescribing it he could get into trouble ... to me it was BS cause no one will find out ... so now I have to go see this neurologist ... waiting list of 5 months! So I will try to find another doctor that does n`t have fear about this.

@Martin69

 

[Martin69]

@nills
I don't know if asking a neurologist would help much.
My wife knows one very well (they were together in school). But if I would ask him, he would also refer to the red alert. So I doubt we could do a proper study if we would wait for doctors confirmation. At the end, no one will take the risk - only yourself.

Only way out of this is getting the stuff from Spain, where they even do not ask for a prescription and try ourselves.
Or waiting for AUT00063 until it gets released.

 

[Nucleo]

My T was not caused by noise (although I have normal hearing loss in the high frequencies).

There is no such things at ''normal hearing loss''. Any changes in audiograms are caused to wear and tear or the organ of corti. Significant threshold shifts do not happen normally.

It infuriates me that people just accept the fact that loss of higher frequency is a normal part of aging. It really isn't. All stereocilia in the inner ear are meant to last a lifetime, since they do not comeback. Constant noise exposure, even below the recommended levels of 85 db/8 hours slowly kills off stereocilia, starting from the high frequencies since they are located at the base end of the cochlea.

 

[Martin69]

There is no such things at ''normal hearing loss''. Any changes in audiograms are caused to wear and tear or the organ of corti. Significant threshold shifts do not happen normally.

It infuriates me that people just accept the fact that loss of higher frequency is a normal part of aging. It really isn't. All stereocilia in the inner ear are meant to last a lifetime, since they do not comeback. Constant noise exposure, even below the recommended levels of 85 db/8 hours slowly kills off stereocilia, starting from the high frequencies since they are located at the base end of the cochlea.

@Nucleo: Sorry if I wrote this incorrectly. I have hearing loss above 6K. Probably due to loud teenager time in clubs or on concerts. Also was riding a loud motor bike that time. But I never ever had any issue with my ears, not even fleeting T. My T was finally caused by anxiety/stress, so no another noise event.

 

[SoulStation]

There is no such things at ''normal hearing loss''. Any changes in audiograms are caused to wear and tear or the organ of corti. Significant threshold shifts do not happen normally.

It infuriates me that people just accept the fact that loss of higher frequency is a normal part of aging. It really isn't. All stereocilia in the inner ear are meant to last a lifetime, since they do not comeback. Constant noise exposure, even below the recommended levels of 85 db/8 hours slowly kills off stereocilia, starting from the high frequencies since they are located at the base end of the cochlea.

Thank you Dr. Nucleo! Now I know .... Are you a trained physician or professional BTW?

 

[Danny Boy]

@nills @Danny Boy
Like others here I am only testing. User RaZaH also had success with taking it occasionally. My experience yesterday was maybe just coincidence. I do not plan taking 1200 mg per day with side effects. I need to function somehow. And yes, there is no "recommended dose for T".

Nills, why did the Neurologist stopped your doctor giving Trobalt to you? I guess he has the known concerns regarding side effects.

Well, according to this the dosage should be the recommend dose which is given for epilepsy.


"demonstrated the role of the KV7 channels in the induction of tinnitus in the mouse dorsal cochlear nucleus model, and showed that retigabine may prevent the development of tinnitus. We estimated the therapeutic potential of Kþ channel openers in suppressing tinnitus-like activity by quantifying the responses in the auditory cortical networks. Retigabine had the highest therapeutic potential, with a therapeutic concentration of 7.4 mM – a concentration at which counteraction against induced- hyperactivity were effective – followed by NS1619 (15.2 mM), flupir- tine (23.3 mM), and isopimaric acid (30.0 mM). These values were well within the range of their effective concentrations against epilepsy (3–100 mM; Kobayashi et al., 2008), thus, possible off-label treatment for tinnitus is plausible (and safe). Clinical studies had calculated the free brain concentration of retigabine taken at 1200 mg/day to be

around 2.0 mM (Large et al., 2012) – a dose equivalent to that used in an animal model of pentylenetetrazol-induced seizure (Rostock et al., 1996). The other three compounds have not undergone pharmaco- kinetic studies. However, as their EC50 and therapeutic concentration values are almost comparable to retigabine, it is reasonable to assume that the potential effect of tinnitus-like activity suppression may be observed at a similar dose."

 

[snow86]

After Martins experience with Trobalt Im gonna try this as soon as I get it from Spain. (2-3 weeks)

Then we can see if Trobalt/Retigabine can do something against extreme low/bass rotating T sounds. (Brain sounds, not ear)
Also gonna try some Keppra if I can get it from my Doc (probably not) and see if it will do something to my hyperacusis. My T is connected with my H...not that reactive as Geo's but its still bad.

Dont care about the sideeffects anymore. If this wont change anything then im as good as dead.
Several loud washing machines inside one's head are unbearable. Low rotating sounds = hell...
High tonal sounds in my head dont bother me.

 

[Danny Boy]

After Martins experience with Trobalt Im gonna try this as soon as I get it from Spain. (2-3 weeks)

Then we can see if Trobalt/Retigabine can do something against extreme low/bass rotating T sounds. (Brain sounds, not ear)
Also gonna try some Keppra if I can get it from my Doc (probably not) and see if it will do something to my hyperacusis. My T is connected with my H...not that reactive as Geo's but its still bad.

Dont care about the sideeffects anymore. If this wont change anything then im as good as dead.
Several loud washing machines inside one's head are unbearable. Low rotating sounds = hell...
High tonal sounds in my head dont bother me.

I hope it helps and gets better...I know what it's like to suffer.

 

[linearb]

There is no such things at ''normal hearing loss''. Any changes in audiograms are caused to wear and tear or the organ of corti. Significant threshold shifts do not happen normally.

It infuriates me that people just accept the fact that loss of higher frequency is a normal part of aging. It really isn't. All stereocilia in the inner ear are meant to last a lifetime, since they do not comeback. Constant noise exposure, even below the recommended levels of 85 db/8 hours slowly kills off stereocilia, starting from the high frequencies since they are located at the base end of the cochlea.

Well, sure, I mean, it's an inescapable fact that urban environments have average volumes that exceed what we evolved to really deal with.

That said -- nothing in our bodies lasts forever. We didn't really evolve to live to the ages that we do now. If you live to see 70, 80, 90, it's not just your ears that won't work as well, it's pretty much every part of your body. The senses get dimmer, intellect gets dimmer, connective tissue gets weaker.

Getting old sucks. So does the alternative!

And, of course, tinnitus, the specific subject of this forum, has a lot more to do with structural brain problems or neurotoxic damage to specific brain structures, than it does with cilia loss, anyway -- otherwise everyone would have it, and not just 10-20% of the population.

 

[Nucleo]

That said -- nothing in our bodies lasts forever. We didn't really evolve to live to the ages that we do now. If you live to see 70, 80, 90, it's not just your ears that won't work as well, it's pretty much every part of your body. The senses get dimmer, intellect gets dimmer, connective tissue gets weaker.

I get that. What's really annoying for me is that more and more people get hearing loss at younger ages and it's just being chalked up as ''normal hearing loss''. So if people just accept this as a normal part of aging, then they do not change their noisy lifestyles or protect their hearing accordingly.

People don't give a crap about their ears until problems show up. By then it is already far too late.

 

[linearb]

I get that. What's really annoying for me is that more and more people get hearing loss at younger ages and it's just being chalked up as ''normal hearing loss''. So if people just accept this as a normal part of aging, then they do not change their noisy lifestyles or protect their hearing accordingly.

People don't give a crap about their ears until problems show up. By then it is already far too late.

Yeah; society gets healthier in some ways, and sicker in others. If I knew when I was 15 what I know now, I probably wouldn't have ever gone to concerts or shot guns without earplugs. But, if I knew when I was 15 what I know now, I would have done a whole ton of things radically different, and I expect this is true for everyone.

On the other hand, we appear to be on the cusp of several things which might fundamentally change the idea that once hearing damage is done nothing can be done about it.

 

[Danny Boy]

Yeah; society gets healthier in some ways, and sicker in others. If I knew when I was 15 what I know now, I probably wouldn't have ever gone to concerts or shot guns without earplugs. But, if I knew when I was 15 what I know now, I would have done a whole ton of things radically different, and I expect this is true for everyone.

On the other hand, we appear to be on the cusp of several things which might fundamentally change the idea that once hearing damage is done nothing can be done about it.

Funniest thing is, I've never shot a gun nor have I went clubbing. I don't even drink or smoke, yet I have tinnitus from an ear infection. Tinnitus can hit anyone at any age from so many causes, that it becomes annoying.

 

[ruben ruiz]

When I see the word annoying to describe Tinnitus I cringe.

 

[Danny Boy]

When I see the word annoying to describe Tinnitus I cringe.

I meant that it's annoying how many things can contribute to getting tinnitus.

 

[Nucleo]

I meant that it's annoying how many things can contribute to getting tinnitus.

No shit. An acquintance of mine got tinnitus from blowing his nose too hard. What a shit way to get T lol.

 

[Danny Boy]

No shit. An acquintance of mine got tinnitus from blowing his nose too hard. What a shit way to get T lol.

Now that is annoying!

 

[ruben ruiz]

I understand Danny.

 

[Danny Boy]

I understand Danny.

I'm glad to hear.

 

[Silvio Sabo]

I get that. What's really annoying for me is that more and more people get hearing loss at younger ages and it's just being chalked up as ''normal hearing loss''. So if people just accept this as a normal part of aging, then they do not change their noisy lifestyles or protect their hearing accordingly.

People don't give a crap about their ears until problems show up. By then it is already far too late.

I for one actually don't think it's a bad thing that young people today are stupid and don't protect their hearing. The more people that get this thing the more money will be spent into finding a cure. So for me personally if I look at it in a sort of selfish way, now that I have got this, the best thing would be if everybody in the whole world got T. Then we would probably see some rapid improvements in the research of cure for T. and hearing loss.