Retigabine (Trobalt, Potiga) — General Discussion

[RaZaH]

@Gill Hayes , yes , I have two kinds of T , one is the more "regular" T that I can hear in my ears and can be masked, those T days are my good days. Then there is the super high frequency , buzzing T that is in my brain , I can even "feel" it more then hear it. That one is the worst, no amount of masking helps ...if I could get rid of that I would be fine with the "eeeeee" audible T.

 

[Gill Hayes]

@RaZaH Argh righto, that is similar to me. My T has never been in my ears, mine is a high frequency hiss in my head. Apparently about 15% of T sufferers have it exclusively in their head/brain. I've often said to people that it's not just a sound in my head, alot of the time it's more like a feeling in my head. It's very weird isn't it. x

 

[Champ]

Going to my GP (again) for this, bringing some printouts of the University of Pittsburgh study & another one on how retigabine works... wish me luck getting a prescrip this time!

 

[Danny Boy]

Going to my GP (again) for this, bringing some printouts of the University of Pittsburgh study & another one on how retigabine works... wish me luck getting a prescrip this time!

Hope it goes all well for you! Word of advice, make sure to take some supplements to protect your vision.

 

[undecided]

and no more T when you ended trobalt ?

Nope, the trobalt had no lasting effetct for me.
Tinnitus is still there, same volume.

 

[gintas]

so , no one had issues with Eyes using Trobalt ?

 

[amandine]

so , no one had issues with Eyes using Trobalt ?

I would really like to start a new thread that shows only the results of those who have taken Trobalt and stopped taking it and what the final results are - so a score of 1 to 10 - 1 being no use or change at all and 10 being massive reduction in the noise.
This is only a thread to be completed by those who have taken it.
I know we have a user thread which is excellent but some people have stopped reporting mid way through and then the other posts are mixed up all together. So to find out how particular people have gotten on with it one needs to trawl through all the posts and it just gets confusing.

So I thought if we can have one thread completed only by those who have taken trobalt and what are the final results.
Any offers as to how this thread should look like ie the questions involved...most welcome ,,,but think a final score is the most important and quick referral made easy.
Also thinking that such a thread would then be easy to copy or use to show a doctor for example.
Any offers of help or ideas most welcome. Think such a thread would be very helpful to those who are going to start taking Trobalt.

Yes side effects (IE eye sight for example) during and gone or not gone should very much be included as I think this is peoples main worry about trying Trobalt.
Thanks...

 

[Lloyd Carter]

Looking at the Trobalt TT user thread, it seems that Trobalt's effectiveness was much more likely if the person had T for six to eight months or LESS. Any more and it had little effect (for most). I wonder if there's still a chance Aut and SF can help these chronic T sufferers that Trobalt did not do much for.

 

[valeri]

Looking at the Trobalt TT user threar, it seems that Trobalt's effectiveness was much more likely if the person had T for six to eight months or LESS. Any more and it had little effect (for most). I wonder if there's still a chance Aut and SF can help these chronic T sufferers that Trobalt did not do much for.

That's exactly my concern

 

[amandine]

Looking at the Trobalt TT user thread, it seems that Trobalt's effectiveness was much more likely if the person had T for six to eight months or LESS. Any more and it had little effect (for most). I wonder if there's still a chance Aut and SF can help these chronic T sufferers that Trobalt did not do much for.

Not sure how accurate that is.......I am aware of a couple of people at least who have it for 18 months and have used trobalt and found it to b effective and with lasting effect afer stopping....just wanted to add that......that is why we need a survey done of those who have used trobalt and finished taking it and whether there was a continued benefit after stopping to take it. That way we can see concisely age, duration of medication, benefit during and after stopping trobalt. Remember that many who improved on trobalt just stopped posting here sadly.......

 

[amandine]

That's exactly my concern

Valerie there are people who have had it for longer and had improvements. There are people who have had it less time and had no improvement. That is why I want to start a different thread which shows results from people who have taken it and stopped taking it and the results with a score of 1 to 10 as to improvement.. That way will be able to look at results more easily and help people who are thinking of trying it to make their decision. You have been cautious about taking this drug and rightly so......as have I.... the only drawback I can see for you is that you have had it since 2011 september, and that may be a long time yes but you can at least try it as it may reduce yours if not eradicate.....that way if it is reduced you could make it to autifony drug release.....hope that helps you and anyone else .....

 

[amandine]

Nope, the trobalt had no lasting effetct for me.
Tinnitus is still there, same volume.

@Valerie You see for this person the trobalt didnt do anything but for someone else who had it for same time it has worked...there is no cut and dried with this

 

[linearb]

well, put me in the "severe negative side effects" group; 2 days of 300mg TID did some bad things to my urinary system which have yet to completely resolve 4 days later. There is no way that anyone could convince me to take this drug for 6-8 weeks.

That said, it "worked" on the tinnitus, it's just that I value being able to pee under my own power and not feel like there are shards of glass stuck in my dick 24/7 even more than I value silence...

 

[RaZaH]

@linearb , you are hard to please

 

[1MW]

@Gill Hayes , yes , I have two kinds of T , one is the more "regular" T that I can hear in my ears and can be masked, those T days are my good days. Then there is the super high frequency , buzzing T that is in my brain , I can even "feel" it more then hear it. That one is the worst, no amount of masking helps ...if I could get rid of that I would be fine with the "eeeeee" audible T.

I have the same ear and brain T i can manipulate ear T with valsalva like manuveurs
but brain HF T does not respond to anything ear pressure manuveur.
Responds only to corticosteroids benzos and trobalt on the other side ear T responds
to ear pressure changes.
Also my brain T is more like feeling than sound and can not be masked.
I have this brain T more when iam tired..

 

[Champ]

Hope it goes all well for you! Word of advice, make sure to take some supplements to protect your vision.

The GP felt bad for me knowing that I've gotten no useful treatment for it... but she referred me to an otolaryngologist in Boston who works at the Mass Eye & Ear center who should be able to help (where a lot of cutting edge researching related to tinnitus is happening). I should be able to get a prescription for Retigabine + Keppra from them and possibly get involved in any clinical trials. I would love to guinea pig for Autifony, obviously.

It's not easy being a programmer and having a ringing in your ear that you can hear over most things!

 

[Danny Boy]

The GP felt bad for me knowing that I've gotten no useful treatment for it... but she referred me to an otolaryngologist in Boston who works at the Mass Eye & Ear center who should be able to help (where a lot of cutting edge researching related to tinnitus is happening). I should be able to get a prescription for Retigabine + Keppra from them and possibly get involved in any clinical trials. I would love to guinea pig for Autifony, obviously.

It's not easy being a programmer and having a ringing in your ear that you can hear over most things!

I understand. But hey, I'm glad you got a prescription, I'd never get one in the UK.

 

[Champ]

I understand. But hey, I'm glad you got a prescription, I'd never get one in the UK.

The only prescription I got from her was for Xanax Which will be useful when my brain is in a tizzy over this. I think the doctor at Mass Eye and Ear would be open to doing it for me. Here's to hoping that it happens!

 

[nills]

The only prescription I got from her was for Xanax Which will be useful when my brain is in a tizzy over this. I think the doctor at Mass Eye and Ear would be open to doing it for me. Here's to hoping that it happens!

man Xanax ... jeezes ... So much for her credibility. Keppra should not be a problem te get. My neurologist didn`t want to give me RTG but gave me 2 prescription of Keppra straight away.

 

[Danny Boy]

man Xanax ... jeezes ... So much for her credibility. Keppra should not be a problem te get. My neurologist didn`t want to give me RTG but gave me 2 prescription of Keppra straight away.

You can't even get that on the NHS, as it's addictive. If you get Xanax, get the XR version as it's less addictive.

 

[Danny Boy]

Can help with strokes eh? Awesome stuff! I don't think there's another KCNQ4 channel opener being made...So, maybe keep some trobalt spare, just incase you are at risk of a stroke

KCNQ4 channel activation by BMS-204352 and retigabine.
Schrøder RL1, Jespersen T, Christophersen P, Strøbaek D, Jensen BS, Olesen SP.
Author information

Erratum in

• Neuropharmacology. 2003 Mar;44(4):553.

Abstract
Activation of potassium channels generally reduces cellular excitability, making potassium channel openers potential drug candidates for the treatment of diseases related to hyperexcitabilty such as epilepsy, neuropathic pain, and neurodegeneration. Two compounds, BMS-204352 and retigabine, presently in clinical trials for the treatment of stroke and epilepsy, respectively, have been proposed to exert their protective action via an activation of potassium channels. Here we show that KCNQ4 channels, stably expressed in HEK293 cells, were activated by retigabine and BMS-204352 in a reversible and concentration-dependent manner in the concentration range 0.1-10 microM. Both compounds shifted the KCNQ4 channel activation curves towards more negative potentials by about 10 mV. Further, the maximal current obtainable at large positive voltages was also increased concentration-dependently by both compounds. Finally, a pronounced slowing of the deactivation kinetics was induced in particular by BMS-204352. The M-current blocker linopirdine inhibited the baseline current, as well as the BMS-204352-induced activation of the KCNQ4 channels. KCNQ2, KCNQ2/Q3, and KCNQ3/Q4 channels were activated to a similar degree as KCNQ4 channels by 10 microM of BMS-204352 and retigabine, respectively. The compounds are, thus, likely to be general activators of M-like currents.


Retigabine works primarily as a potassium channel opener—that is, by activating a certain family of voltage-gated potassium channels in the brain. This mechanism of action is unique among antiepileptic drugs, and may hold promise for the treatment of other neurologic conditions, including migraine, tinnitus and neuropathic pain.
New research suggests that an already-approved drug could dramatically reduce the debilitating impact of strokes, which affect nearly a million Americans every year.In the study, one dose of the anti-epilepsy drug, retigabine, preserved brain tissue in a mouse model of stroke and prevented the loss of balance control and motor coordination. Researchers from the School of Medicine at The University of Texas Health Science Center at San Antonio conducted the study, which was published Feb. 3 in The Journal of Neuroscience.

 

[valeri]

@Valerie You see for this person the trobalt didnt do anything but for someone else who had it for same time it has worked...there is no cut and dried with this

Well I took 300mg this morning and the hiss was gone for just a short time, now back to usual.
Trobalt is not working for me.

But what I'm saying is if Trobalt has no effect on my tinnitus then autifony for sure won't work either.

 

[Danny Boy]

Well I took 300mg this morning and the hiss was gone for just a short time, now back to usual.
Trobalt is not working for me.

But what I'm saying is if Trobalt has no effect on my tinnitus then autifony for sure won't work either.

Take 400mg as a single dose. No point in wasting tablets. Just dive into 400mg, it should help. 400x3.

 

[valeri]

Take 400mg as a single dose. No point in wasting tablets. Just dive into 400mg, it should help. 400x3.

Isn't that a bit risky?
If I go for that dosage I have only enough for few weeks max!

 

[Danny Boy]

Isn't that a bit risky?

Nope. You're taking 300mg already, so don't see why 400mg would hurt.

 

[valeri]

Nope. You're taking 300mg already, so don't see why 400mg would hurt.

Was your t constantly down on Trobalt?
For me it helps but just for a very very short time! Not promising

 

[Danny Boy]

Was your t constantly down on Trobalt?
For me it helps but just for a very very short time! Not promising

Well, it does take time. Give it a month on 400mgx3 and you should see a difference. Many give up far too quickly.

 

[valeri]

@nills
@undecided

While on Trobalt did you experience only a temporary reduction of tinnitus?
For me it works maybe just after I take it and lasts for 30-60 minutes and then it's back to "normal".
Was your experience the same or you would get the lasting reduction for the whole duration while on it?
Thanks!

 

[undecided]

@valeri yes the effect was temporary, every time.
It would last up to 2 hours max, then back to baseline. Sometimes it would last for only 20-30 minutes.

Which is totally weird because it's supposed to reach max plasma levels after 4 hours (I think).
I think it may have something to do with each person's metabolism. That's why I'm having some reservations about 063.
There may be some way to force slower drug metabolism such as grapefruit juice or cimetidine though. Too many variables to take into account, we'll just have to wait it out and start experimenting.

 

[valeri]

@valeri yes the effect was temporary, every time.
It would last up to 2 hours max, then back to baseline. Sometimes it would last for only 20-30 minutes.

Which is totally weird because it's supposed to reach max plasma levels after 4 hours (I think).
I think it may have something to do with each person's metabolism. That's why I'm having some reservations about 063.
There may be some way to force slower drug metabolism such as grapefruit juice or cimetidine though. Too many variables to take into account, we'll just have to wait it out and start experimenting.

Thank you for your reply.
I'm just worried now that autifony won't work for me