Retigabine (Trobalt, Potiga) — General Discussion

[Zimichael]

@rtwombly ..hey rt. glad you made it through that "episode"!!! Geeez...definitely worth noting and reporting on. Thank you. And a reminder, that the way this drug affects everyone is very different so caution is the word!!! I mean look at where Danny Boy was (totally climbing the walls) and now he is on 1200 mg/day and seemingly cruising along like a whole different person! Radical.

@1MW ...It is clear that you are having "issues" with Trobalt, but to me also making some blanket statements that are somewhat over generalized...Like that a good night's sleep is better than Trobalt for tinnitus. Maybe for your tinnitus it is, but certainly not for mine! Makes zero difference really, and likewise to lots of T folks.

Anyway, I find it hard to get a handle on what is happening for you as I looked again and see no User Forms/Updates in your name?! Then I see this reference to a corticosteroid and am wondering if you are taking this as well as Trobalt??? And maybe what other medications or supplements???

The morning i had bad T and after taking 100mg RTG lowered a little in 1.5 hours but not stopped also i got 1.5mg dexamethasone but dexamethasone needs more time to act ( more than 10 hours to me ).

There is such individual variation already in how people are affected by Trobalt that adding other drugs to the mix is something I consider to be likely to skew results/effects. Maybe in a bad way!
I purposely took nothing else during my Trobalt test except my standard, long term, hard to get off 1/2 benzo pill...to make sure variables were at a minimum. I think this is very important when on Trobalt. To keep as clean a baseline as possible. So, would be great if you could do all the User Forms to give me/us a better picture of what is going on and what you are taking. Apologies if I am just not seeing them for some reason.

best to you and take care, Zimichael

 

[1MW]

http://en.wikipedia.org/wiki/KCNQ4
http://www.ncbi.nlm.nih.gov/pubmed/18797286
http://www.cell.com/abstract/S0092-8674(00)80556-5
http://www.ncbi.nlm.nih.gov/pubmed/11378159
http://www.ncbi.nlm.nih.gov/pubmed/21951272
http://www.ncbi.nlm.nih.gov/books/NBK1209/

Comparing audiogram before and after trobalt is a must i think.
Hearing becomes better worse of stays same ?
T has to do with hearing.
None with perfect hearing (not in audiograms but clinicaly perfect) has T .
30% of these who have some hearing impairment have T.
More hearing deaferantation more loud and intense is T.

 

[john2012]

@john2012

I really don´t think that that one should write a success story while still on the drug

to the best of one's knowledge dannyboy's story has probably been the most successful
to date.
and even if he needs to keep using it, many drug therapies can still be considered successful
in such light if the goal is to bring relief.

 

[1MW]

Some hereditary problem with hearing has to do with potassium channels.
Muted genes that encoding potassium channels are not normal.
In those with these muted genes noise do more damage than normal people.
http://www.ncbi.nlm.nih.gov/books/NBK1434/
Potassium channels play a role in function of cochlea (outer hair cells)
The question is if retigabine improves the function of cochlea or worsening it / improving or worsening hearing.
Maybe the improvement which experience some members has to do with improvement to outer hair cells function and not brain plasticity.

@Danny Boy & @Mpt had perfect audiogram.
So this is the reason for this dramatic improvement in reality they had very minimal hearing problem . If you keep near perfect hearing the changes T to stop on it's own are very high.
In those with no normal audiogram RTG works ?

 

[Danny Boy]

to the best of one's knowledge dannyboy's story has probably been the most successful
to date.
and even if he needs to keep using it, many drug therapies can still be considered successful
in such light if the goal is to bring relief.

Thanks. Mine is low at the moment, but still there. My H is gone, but I believe after the 6 month, I may only need 1-2 months more to be like MPT. I say this because Autifony only take people in after the 6th month, so maybe it's the same with trobalt? And maybe, between the 5th-6th month just as the tinnitus goes to the brain, the trobalt stabilises the neurons. That's only me taking a guess, but god, I hope I'm right.

 

[Danny Boy]

Some hereditary problem with hearing has to do with potassium channels.
Muted genes that encoding potassium channels are not normal.
In those with these muted genes noise do more damage than normal people.
http://www.ncbi.nlm.nih.gov/books/NBK1434/
Potassium channels play a role in function of cochlea (outer hair cells)
The question is if retigabine improves the function of cochlea or worsening it / improving or worsening hearing.
Maybe the improvement which experience some members has to do with improvement to outer hair cells function and not brain plasticity.

@Danny Boy & @Mpt had perfect audiogram.
So this is the reason for this dramatic improvement in reality they had very minimal hearing problem . If you keep near perfect hearing the changes T to stop on it's own are very high.
In those with no normal audiogram RTG works ?

I can hear just above 17,000hz...So as you can imagine, my hearing is absolutely fine. You may be on to something? Although, why does Autifony want people with really bad hearing loss?

 

[Danny Boy]

@rtwombly ..hey rt. glad you made it through that "episode"!!! Geeez...definitely worth noting and reporting on. Thank you. And a reminder, that the way this drug affects everyone is very different so caution is the word!!! I mean look at where Danny Boy was (totally climbing the walls) and now he is on 1200 mg/day and seemingly cruising along like a whole different person! Radical.

@1MW ...It is clear that you are having "issues" with Trobalt, but to me also making some blanket statements that are somewhat over generalized...Like that a good night's sleep is better than Trobalt for tinnitus. Maybe for your tinnitus it is, but certainly not for mine! Makes zero difference really, and likewise to lots of T folks.

Anyway, I find it hard to get a handle on what is happening for you as I looked again and see no User Forms/Updates in your name?! Then I see this reference to a corticosteroid and am wondering if you are taking this as well as Trobalt??? And maybe what other medications or supplements???



There is such individual variation already in how people are affected by Trobalt that adding other drugs to the mix is something I consider to be likely to skew results/effects. Maybe in a bad way!
I purposely took nothing else during my Trobalt test except my standard, long term, hard to get off 1/2 benzo pill...to make sure variables were at a minimum. I think this is very important when on Trobalt. To keep as clean a baseline as possible. So, would be great if you could do all the User Forms to give me/us a better picture of what is going on and what you are taking. Apologies if I am just not seeing them for some reason.

best to you and take care, Zimichael

Zimichael is very odd trobalt made your H worse...When it made mine much, much better...Seriously, before trobalt everything was amplified 10x now it's back to normal, everything is normal volume again. Just so odd it had no effect on you? Just hope Autifony's drug can help you out.

 

[dan]

I can hear just above 17,000hz...So as you can imagine, my hearing is absolutely fine. You may be on to something? Although, why does Autifony people with really bad hearing loss?

You raised an excellent point here.

 

[Mo_Mo]

between the 5th-6th month just as the tinnitus goes to the brain

I just finished my 2nd month of T and have been thinking of trying RTG hence do you suggest waiting another 3 months and then start RTG?

 

[attheedgeofscience]

Although, why does Autifony want people with really bad hearing loss?

Because they are probably looking for candidates with specific sub-types of tinnitus. And although these sub-types of tinnitus may be present in people without hearing loss, one way to ensure that they get hold of the right participants is to set the inclusion criteria as they have done it.

 

[1MW]

@Danny Boy because you have near perfect hearing and a little deaferentation your T
will stop independent from RTG i say that because i got sudden hearing loss & T & H but because my hearing returned to near perfect levels and i heard up to 16khz with max 10db loss my T & H after 1 year and some months stopped
without RTG.
After some years my HF lost i don't hear up to 16khz perfect and my T returned i think this time T because of hearing loss in HF will be permanent.
In my opinion those with near perfect hearing are not success stories from RTG.
Success story is someone with measurable hearing loss in audiogram that his T stop after stopping RTG... and the result retained for some serious time.
I think this does not happened to anyone which taking RTG till now.

 

[Zimichael]

Zimichael is very odd trobalt made your H worse...When it made mine much, much better...Seriously, before trobalt everything was amplified 10x now it's back to normal, everything is normal volume again. Just so odd it had no effect on you? Just hope Autifony's drug can help you out.

@Danny Boy ...Yes it is odd. But I'm not the only one, as mentioned above. The variances of how some people are retaining their T (but maybe at lower levels) yet getting rid of H on Trobalt are "intriguing". Which is another way of saying WTF is going on here???
I mean the whole question of what "Hyperacusis" actually is in terms of neurological function, is up for grabs IMHO. Sure there is a "gain" going on, but obviously it is linked to T yet also can be independent of T...Ergo, Ttrobalt folks getting rid of their H for example! Thus the need for more thought on how the Kv channels hypothesis works on H as well as T, because the 'gates' or 'mechanisms of the gates' involved are seemingly "different". Or maybe different???

Did we know this before the Trobalt trial??? NOPE!!! And I think I could include the hot shot researchers too in that statement. So, we are learning something here...about H, let alone T. So keep filling in those darn User Forms! And reporting here in the thread of course.

So, it appears that we have some very good questions coming up about Trobalt and efficacy. For example:
~ Clearly it is very "individual" in reaction and response, and the only way to know seemingly is to try it.
~ Does it work radically differently with those with little or no hearing loss? (I mean hearing up to 16,000 Hz is beyond my imagination. I punk out at about half that!)
~ Does it work better on younger people?
~ Does it work differently on those with T and H, versus just T? *(Incidentally - Do we have anyone with just H and no T???)
~ Maybe if you have had T for a long time it is going to be a bear for Trobalt to have any effect? Seems Like those with shorter term T are getting better results.
~ And so on...

OK @tomm and others...(By the way great post on the last User Form @tomm ) In terms of T just sort of easing off on it's own if it has been a recent horrible addition yo your life, and maybe if you do not have much or any hearing loss (or if it was not so bad some regeneration can happen/is happening??? - Not sure I believe NO regeneration of hair cells can happen if minor damage, as seems like the body would be smarter than that).

In my long and sordid experience with T, the "adaption" or "easing off" of my acoustic trauma induced T(s) did not just fade off in days or weeks. It was more like months. Even when I was a vibrant genetically regenerating kid...It was not "quick". So, I think, that if you are taking Trobalt and this "fade off" happens pretty darn soon after, I think it is unfair to say that perhaps it would have just happened "naturally".
Of course there is no way to know as you have no trial subject of yourself to compare to. Though I suspect I would not be remiss to say, that if someone gets T (say from a rock concert) and it does not disappear overnight, or within a few days...or has no "decreasing trend"...then I would guess that we are looking at months for "change" in volume. I'm not talking adaption/habituation here, as that is different. I'm talking volume...as in "yeah I can only hear it in my quiet room", or "I can hear it above the sound of my electric drill without a load drilling bit in" (same drill, no cheating), or "I can only not hear it sitting in my same tub with bath water coming in on full blast, but can hear it at half blast"...Whatever. *(Assuming here no audiograms for T "volume/loudness" done).

I hope you see my point. If you are getting rapid changes in T volume (though nothing wrong with Trobalt helping you "habituate" faster!!!) while on Trobalt and you are not a super placebo type...I think it's the Trobalt!

Lastly @1MW ...I'm losing you here:

In my opinion those with near perfect hearing are not success stories from RTG.

Ummmmmmmmmmmm...isn't @Danny Boy the perfect counter example to that??? Sounds like he could hear bats at his hearing capabilities, yet to me is clearly a Retigabine success story (for now at least - as just read his posts of some months back. Radically different!)
And...Uhhhhhhhh, please post User Forms and what other meds you are taking. Thanks!!!

Best, Zimichael

 

[Champ]

Your auditory system can be compromised even if you have good hearing. I can hear just fine (14 KHz left ear, 15 KHz right ear) but my tinnitus is very loud.

If the auditory system is working smoothly you'd expect no tinnitus or hyperacusis even with cochlea damage... but if there's any issues with the electrical/chemical interactions in your auditory system with respect to signal processing that it can create a scenario where those 2 symptoms arise.

Just thinking out loud.

 

[Champ]

I should also note that my tinnitus is always there but my brain has got to a point where it will "shut off" the tinnitus signal if I'm very focused/not stressed/had enough sleep. Even if all 3 of those are satisfied, I can hear it LOUDLY even in noisy environments. But its strange - it seems to activate itself once I stop "going" and stop. It seems to be something like a resting nerve that invokes the problem.

Wish I understood it better! I'm just a computer programmer though.

 

[Zimichael]

@65vwbus ...I noticed on your User Form you are taking Primidone. So with Trobalt = two anti-epileptics??? Ummmmm...is this wise, or am I missing somewhere that you are tapering off this while on the Trobalt? (Sorry I have had dead computer issues for past week and will continue for a bit - so have missed a lot).
Also of course there it the tricyclic AD in there too.

Best, Zimichael

 

[65vwbus]

Hey @Zimichael
I've been taking half a Primidone pill for months, because a previous epilepsy drug left me with a very noticeable tremor, I look like I have Parkinson's without it. Yeah the Dosulepin is a tricyclic, and it was the only drug I'd tried in 18 months that knocked the horrific pain level down a bit. I've tried a LOT of drugs! Adding the Retigabine has already made even more of a difference, although it's not totally gone yet. I really don't want to go back to being bedridden again and unable to work at all. My neurologist told me it's fine to stay on the other two drugs for now, we're going to review it in a few weeks. I also read a research paper that mentioned taking Amitriptyline and Retigabine together to increase pain relief.

 

[1MW]

I wake up morning without T the previous night i got 100mg RTG
after 1-2 hours T gradually appeared and i got 100mg RGT after 1 hour improvement
also i got afternoon 100mg RTG and now i have suicide T.
T in every single frequency from 8khz to 20khz massive T in all high frequencies.
Before starting RTG i never had this type of T.
I get relief from RTG but when it wears off the T is much worse than before getting RTG.
I think at the end of the road with RTG there is a permanent worsening, improvement is only temporary when you are on RTG and after stopping it you have worse T than before taking RTG same as benzos. Iam very disappointed.

 

[john2012]

I think at the end of the road with RTG there is a permanent worsening, improvement is only temporary when you are on RTG and after stopping it you have worse T than before taking RTG same as benzos. Iam very disappointed.

so we need to closely watch Dannyboy once he comes off RTG
hopefully it'll be good news like it was for mpt

 

[1MW]

I never had tremor in my hands before taking RTG.
Now when RTG wears off i get a strange tremor in my hands like the start of seizure.
I can not synchronize hand movement.Maybe RTG lowers seizure thresholds and iam getting "mini seizure".

 

[Viking]

I never had tremor in my hands before taking RTG.
Now when RTG wears off i get a strange tremor in my hands like the start of seizure.
I can not synchronize hand movement.Maybe RTG lowers seizure thresholds and iam getting "mini seizure".

How much is your dosage? Are you still using vasodilatators or benzodiazepines?
It is a side effect, exspecially marked if you are using benzos

 

[SoulStation]

I never had tremor in my hands before taking RTG.
Now when RTG wears off i get a strange tremor in my hands like the start of seizure.
I can not synchronize hand movement.Maybe RTG lowers seizure thresholds and iam getting "mini seizure".

I had some similar tremors it was listed as an 8% side effect on medscape. I would just stop it man. Its not worth it.

 

[1MW]

Yes iam taking benzos 0.6mg lorazepam (6mg diazepam) i think its a low dose.
In the past i taken 2.5mg and cut off without tremor.
My opinion from RTG is that it improves but when wears off you get worse T like benzos.
Maybe iam wrong because i have not taken enough time but till now i not see any cure here only worsening in the long time or maybe my T is not like others that claim RTG cured them.

 

[RaZaH]

I think at the end of the road with RTG there is a permanent worsening, improvement is only temporary when you are on RTG and after stopping it you have worse T than before taking RTG same as benzos. Iam very disappointed.

Is there anything at all to support this except your opinion ? Is this your experience or just conjecture ?

 

[Viking]

Yes iam taking benzos 0.6mg lorazepam (6mg diazepam) i think its a low dose.
In the past i taken 2.5mg and cut off without tremor.

Is not a problem of "withdrawal".
Proceed quietly. I would worry more if I had the "shock" or unintentional movements or sudden movements and uncontrollable. The tremors may be based on emotions.
If it continues, decrease slightly the dosage of RTG.
Benzodiazepines interact with this medication.
best wishes

 

[thesaint]

http://www.nytimes.com/2015/01/10/b...d=nytcore-ipad-share&smprod=nytcore-ipad&_r=2

 

[john2012]

well, let's all hope we hear something good come out of the autifony trials.
agreed, dannyboy is yet to come off RTG but at least he's been able to
report undeniably good results and from quite early on.
So it would be heartwarming for someone on autifony trials
to tell us it's not just good news for rats.

 

[Mo_Mo]

@1MW are you still on RTG? How are the spikes from 8-20khz

 

[john2012]

so who's had the most success with trobalt, apart from dannyboy?
I read somewhere that viking had 70% relief but had to stop using it, a shame.
who knows, trobalt could be better than aut0063

 

[Champ]

so who's had the most success with trobalt, apart from dannyboy?
I read somewhere that viking had 70% relief but had to stop using it, a shame.
who knows, trobalt could be better than aut0063

A lot of users had success. Read the Retigabine report thread.

 

[1MW]

@1MW are you still on RTG? How are the spikes from 8-20khz

Yes iam. Spikes have lowered but not from RTG i got corticostroids thats make huge difference to me.
RTG only lowers little for 2 hours after that a bit worsening as rebound effect.
To me RTG is a light version of benzos less temporary lowering of T less dependence less rebound T .
For example to me NAC & benzos has more temporary effect than RTG but in long term usage seems to be ototoxic.