Retigabine (Trobalt, Potiga) — General Discussion

[Juan Carlos]

• the pill at 12am, no feel because its masked on daytime
• pill at 4am, im sleeping - too subjective
• the pill at 20h: yesterday a took it with almost empty stomach for more effect and really felt a decreasse on volume like a 60%, on wich I almost didnt listen at all while watching TV (as happened on february on its beginning), so it confirms me that it has been increased over the year as lastly it really annoyed me while watching TV beacause at night used to be higher volume. The dose was 150mg so i wasn't expecting too much, 200 or 300 will make big difference

 

[Juan Carlos]

By the way. about hyperacusis:

Surely is not worse. Yesterday I went to the gym, when it used to annoy me with this metallic sounds of the weights. I barely was annoyed - the same as before my T appeared one year ago

So I think it is really better, could it be placebo? could be but i dont think so. Pain in your ear when hear a metallic sounds is a quite an objetive feeling

 

[preslys]

Dr. Tzounopoulos said: 'This is an important finding that links the biophysical properties of a potassium channel with the perception of a phantom sound.

'Tinnitus is a channelopathy, and these KCNQ channels represent a novel target for developing drugs that block the induction of tinnitus in humans.'

The KCNQ family is comprised of five different subunits, four of which are sensitive to retigabine.

Now Dr. Tzounopoulos and his collaborators aim to develop a drug that is specific for the two KCNQ subunits involved in tinnitus to minimise the potential for side-effects.

To avoid any risk (side effect).I prefer waiting until this drug will be prescriped by ENT for tinnitus people suffers.

 

[dan]

Dr. Tzounopoulos said: 'This is an important finding that links the biophysical properties of a potassium channel with the perception of a phantom sound.

'Tinnitus is a channelopathy, and these KCNQ channels represent a novel target for developing drugs that block the induction of tinnitus in humans.'

The KCNQ family is comprised of five different subunits, four of which are sensitive to retigabine.

Now Dr. Tzounopoulos and his collaborators aim to develop a drug that is specific for the two KCNQ subunits involved in tinnitus to minimise the potential for side-effects.

To avoid any risk (side effect).I prefer waiting until this drug will be prescriped by ENT for tinnitus people suffers.

I hope you can wait 10-15 years...

 

[preslys]

I hope you can wait 10-15 years...

be patient dan some side effects have ten times more painful than tinnitus . I'll take the risk of taking Trobalt if things do not move forward in the future.

 

[undecided]

Just a little note for whoever might be interested,
Reigabine, even at a low dose (3x100mg) completely obliterated any signs of reactive tinnitus.
My T was slightly reactive, (some sounds would get a metallic 'aura' after I listened to them.).
This is no longer the case, every sound I hear sounds totally normal.
BTW I've never had any form of hyperacusis or any ear sensitivity to loud sounds so I can't really comment on that.

 

[Juan Carlos]

Just a little note for whoever might be interested,
Reigabine, even at a low dose (3x100mg) completely obliterated any signs of reactive tinnitus.
My T was slightly reactive, (some sounds would get a metallic 'aura' after I listened to them.).
This is no longer the case, every sound I hear sounds totally normal.
BTW I've never had any form of hyperacusis or any ear sensitivity to loud sounds so I can't really comment on that.

I'm not sure if we understand the same of "reactive tinnitus".
as for me, it's just that the same tinnitus gets louder for some period, hours or days when you stay for some time in a loud place, (like going out frmo concert)

what you call an "aura", is maybe a consequence of the TTS? Tensor tympani syndrome ?
http://www.hyperacusis.net/hyperacusis/tensor tympani syndrome/default.asp
http://hearinglosshelp.com/weblog/do-i-have-tonic-tensor-tympani-syndrome-ttts.php
maybe im wrong

 

[NGC891]

I am of the same opinion as @Juan Carlos. Evening dose can reduce tinnitus that increase often throughout the day.
. For several nights I hardly sleep because of coughing and my tinnitus returned to their level before I started treatment. In the great evils great remedies! That night I slept with a quartered onion on my bedside table ... but only without my darling! What smell in the room this morning !!!

This morning, it's quieter than yesterday, I fell beter. My tinnitus came down. I will say to a level of 8 against 9 yesterday. A good night's sleep is and will remain essential I think. This is slightly lower in my left ear that has a whistle while my right ear has in addition a sound beep beep.

I am now 150 + 150 + 150 a day. I regularly take my doses at 7AM, 15PM and 23PM.

The largest side effects are dizziness sensations that can occur at any time. I kinda like being on a boat at times. This is most marked in the shower in the morning. May be that the heat of the water has an influence? or assimilation with an empty stomach causes more side effects?

This afternoon, I will stall an appointment with my ophthalmologist to track the status of my retina over treatment.

Next week I will take 200 + 200 + 200 per day.
I try to limit my account to a weekly update on the following discussion in order not to overload:
https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047/

@locoyeti: I'll try not to be off topic, but I think you had two clinical trials on AM101 (TACTT2 and AMPACT1). When did you have this injections?
Please, could you remember to us the level of your tinnitus after each treatment and thus before Trobalt?

 

[rtwombly]

Dr. Tzounopoulos said

Members have communicated with Dr Tzounopoulos. Unfortunately any work he is currently doing must be at a very early stage, as he didn't say he was doing anything on it at the present time. Autifony is much further along. I think they will get some good results and additional funding. The delays they've had look to me like money problems, and nothing will smooth those out faster than promising results.

I'm done waiting because I am close to the one year mark and just concerned enough about continuing changes in my brain that I don't want to cross that line without trying every avenue.

 

[Codaz]

I have found some papers on Retigabine, as I have obtained the Textbook of Tinnitus (2010), which is a 700+ page book. It briefly refers to KV7 channel modulation. Very hard scientific literature, but maybe worth reading.

Also, in the literature they describe Maxipost, which is different than Retigabine but also documented on Tinnitustalk before: https://www.tinnitustalk.com/thread...-ion-channels-decreases-tinnitus-in-rats.258/

The paper of Brown (2005) describes that the amygdala is hyperactive in states of anxiety and that Kv7 channels are effected. I had/have anxiety disorder (exam anxiety) before tinnitus onset. Maybe they are related?

Did anyone notice any change in his/her anxiety before and during the intake of Retigabine?

 

[SoulStation]

I have found some papers on Retigabine, as I have obtained the Textbook of Tinnitus (2010), which is a 700+ page book. It briefly refers to KV7 channel modulation. Very hard scientific literature, but maybe worth reading.

Also, in the literature they describe Maxipost, which is different than Retigabine but also documented on Tinnitustalk before: https://www.tinnitustalk.com/threads/bms-204352-maxipost-—-modulating-potassium-ion-channels-decreases-tinnitus-in-rats.258/

The paper of Brown (2005) describes that the amygdala is hyperactive in states of anxiety and that Kv7 channels are effected. I had/have anxiety disorder (exam anxiety) before tinnitus onset. Maybe they are related?

Did anyone notice any change in his/her anxiety before and during the intake of Retigabine?

Yes I did -and believe in other studies the anxiolytic properties of retigabine have been noted in the studies I have read.

 

[Juan Carlos]

Did anyone notice any change in his/her anxiety before and during the intake of Retigabine?

Yeah I think it makes you less worried abouth things in general. I dont feel more sleepy, but i feel more careless, therefore less stressed.
For example when crossing the street and some car is coming in distance, tend to think optimistic that have time enought to cross and dont worry about that

Abouy sleepyness, before trobalt, i had more up and downs, at some times felt more nervious and other times felt very sleepy (ie after launch time). Now its like more constant the whole day, like something was stabilized, i dont feel super sleepy on daytime anymore

 

[SteveToHeal]

I've read the thread and wonder about 2 things:

1. Is it the effect of the drug on the central nervous system as a whole, like being doped up, sleepy, dizzy etc, that reduces the subjective tinnitus?

or

2. That it is actually targeting the Kv channels that the theory says, is the cause of long-term (in the brain) t?

I think it's been mentioned here before, does the drug just make you so spaced out that your t comes down? From what I read the pill is definitely having an affect on the people currently taking it, which is positive news. The side effects not so good.

The reason I ask is because I have started taking Quetiapine at night (2x25mg). I take it around 8.30 and by 10.30pm I am zonked. I've also started taking a alprazolam (benzodiazepine), which is an anti-anxiety. I woke up probably around 6am and lay "resting" for an hour or so before getting up. Quite fresh considering that overload of meds. Today my t is around a 5 or 6 out of 10. It's been sitting at 8 and 9's for weeks now with a few intermittent days of low t. Hell and torture as you all know. SO today is a good day.

So anxiety and stress (body and mind) is definitely linked. I'm just wondering if Retigabine is operating in the same fashion? i.e. dampening the nervous system as a whole, reducing anxiety that brings down the subjective level of t?

I'm hoping I am wrong. It will be interesting to see if those currently on it, once they stop taking it, their t stays at lower volumes or is gone completely like Mpt. Then the theory will comply.

If I could get Retigabine, i'd try it myself.

 

[RaZaH]

Going to the Pharmacy to get me drux ! Finally !

 

[yonkapin]

Going to the Pharmacy to get me drux ! Finally !

Hope things go well champ, good luck!

 

[Juan Carlos]

1. Is it the effect of the drug on the central nervous system as a whole, like being doped up, sleepy, dizzy etc, that reduces the subjective tinnitus?

or

2. That it is actually targeting the Kv channels that the theory says, is the cause of long-term (in the brain) t?

I think it's been mentioned here before, does the drug just make you so spaced out that your t comes down? From what I read the pill is definitely having an affect on the people currently taking it, which is positive news. The side effects not so good.

The whole effect of RTG regarding relaxing mind, drop stress etc MAY help Tinnitus, but, idependetly of that, RTG has a direct effect on T perceived sound
This has been talked before. The annoyance of a T is something quite subjective, but the volume of the T is very objective and cannot be influenced some drug that only 'makes you feel good'.

For example, I heard Lyrica makes you hear T "on the background" and make you forget about it, but that is totally different of what Retigabine is doing, a real change in Tinnitus.

That makes me move to the next thinking that I wanted to tell:
Rating the volume of a T in total silence is quite difficult, because the brain use to normalize it. For example, my T when started probably was around 5db and was super-easyly masked, but it was new for me and it totally scared me because it was new, inside my head and couldn't stop it, i was not habituated and I woulded rate it as 7-8 . Now my T is louder than then, but i am habituated to it so now i rate it as 3.
It has been raising slowly in volume so I didn't notice until I tried RTG and came back to the starting levels..

So for all Trialees, take this in consideration to be the most objetive posible: Whenever you can, rate your T volume regarding to some other sound, usually find the minium white noise needed to mask it, this is a total objetive way to rate it than listen T in complete silence.

Some people with RTG realize a change in the sound: some frequencies disappear: this is very easy to discern, but a general loweing in the volume is very difficult to notice when you are in complete silence, use some white-noise program to see what's the minium level to mask and you will notice of improvements with RTG that you didn't know

 

[attheedgeofscience]

1. Is it the effect of the drug on the central nervous system as a whole, like being doped up, sleepy, dizzy etc, that reduces the subjective tinnitus?

or

2. That it is actually targeting the Kv channels that the theory says, is the cause of long-term (in the brain) t?

See this:

https://www.tinnitustalk.com/thread...n-tinnitus-association.6896/page-4#post-78731

 

[RaZaH]

Can someone tell me how I should start this thing and taper up ?
I know the info is somewhere in this thread but I dont have the patience to search 90 pages
Thanks

Strange , now that I have it I am slightly apprehensive , I do not like drugs.

 

[Zimichael]

@SteveToHeal and @Juan Carlos ...
This point about getting "zonked out" on a drug then your T "feeling/seeming" lower is a good one. Indeed it is worth wondering about with Retigabine, though personally I do not think that is what's happening.

If I get an occasional "what the hell", sit on my deck looking at the hills darken at sunset drinking a couple of glasses of wine, yeah for sure my T is less "intrusive". Because I'm pretty smacked out. Alcohol is a classical dope-you-out drug. (Mmmmmmmm...not sure I have ever heard of anyone becoming hyper alert on a bottle of whisky?!) So yeah, perception of T will go down. But when I go and run a bath I can still hear my T at the bathroom door even though I am wobbling like hell, and it only gets sufficiently masked once I sit in the tub and let the water keep pouring in. Then I hear the T loud and clear once I turn the water off...wine or not. This is one of my "objective masking level measures". [My stage 1 T I could only hear in a very quiet room or when meditating, etc. Yeah, seem like 1,000 times quieter to me today].

Not everyone on Retigabine is getting 'doped out'. You have seen my reports perhaps where I said it seemed to enhance my perception and energy levels. Mood effects for sure in retrospect, but that was not a "doped" kind of mood thing at all. More or less the opposite, except for brief periods of transitory fatigue stuff usually as ramped up.

However, fully agree with Juan Carlos that trialess should try and find "objective" markers for masking intensity and see where their T level changes in relation to those. In a way, that is just to give us some "science", as personally, on a subjective level, who gives a shit...If your T is way lower that is the point! Well, as long as you don't get so chilled you can't function of course.

Best, Zimichael

 

[RaZaH]

My "objective marker" is simple, if I stop feeling like my head is bursting open I will consider that a success and the drug efficient at battling T.

 

[undecided]

I've read the thread and wonder about 2 things:

1. Is it the effect of the drug on the central nervous system as a whole, like being doped up, sleepy, dizzy etc, that reduces the subjective tinnitus?

or

2. That it is actually targeting the Kv channels that the theory says, is the cause of long-term (in the brain) t?

I think it's been mentioned here before, does the drug just make you so spaced out that your t comes down? From what I read the pill is definitely having an affect on the people currently taking it, which is positive news. The side effects not so good.

The reason I ask is because I have started taking Quetiapine at night (2x25mg). I take it around 8.30 and by 10.30pm I am zonked. I've also started taking a alprazolam (benzodiazepine), which is an anti-anxiety. I woke up probably around 6am and lay "resting" for an hour or so before getting up. Quite fresh considering that overload of meds. Today my t is around a 5 or 6 out of 10. It's been sitting at 8 and 9's for weeks now with a few intermittent days of low t. Hell and torture as you all know. SO today is a good day.

So anxiety and stress (body and mind) is definitely linked. I'm just wondering if Retigabine is operating in the same fashion? i.e. dampening the nervous system as a whole, reducing anxiety that brings down the subjective level of t?

I'm hoping I am wrong. It will be interesting to see if those currently on it, once they stop taking it, their t stays at lower volumes or is gone completely like Mpt. Then the theory will comply.

If I could get Retigabine, i'd try it myself.

Retigabine is nothing like alprazolam. Xanax is candy compared to retigabine.

Quetiapine (I've tried 50mg seroquel 4-5 times) comes a bit closer but it is still nowhere near as zombiefying as retigabine. Also, by the 3rd day, seroquel didn't really do much. Retigabine still hits hard after 20 days of use. Anything over 200mg is a pill grenade.

 

[RaZaH]

Man , you are stressing me out here

 

[SoulStation]

Man , you are stressing me out here

Good luck man.

 

[Martin69]

Man , you are stressing me out here

I hope it works for you.
I have also 15-16 kHz T.
If it works, I will get the stuff, too somehow.
Superloud day again.

 

[Juan Carlos]

Man , you are stressing me out here

belive me, side effects are like a russian roulette, maybe u will be lucky like me and some others and have very few and mild, u ll never know until u try it

 

[RaZaH]

"russian roulette" ...that is comforting.

 

[Christian78]

My t was kind a 30% worse last 3 days, it is getting loader i went to 300mg, tonight to 350.
It MUST be something in food! I eat parents food.

And I had problems to pee last 3 days too, it must be again variation in trobalt effect.

well at least side effects last 15 days were 50% less (except memory)​

 

[tomm]

Anyone planning to taper off before the end of the year? Be nice to see some permanent changes.

 

[RaZaH]

Sitting here , looking at a pill in front of me, too chickenshit to swallow it.

 

[Telis]

Sitting here , looking at a pill in front of me, too chickenshit to swallow it.

Don't do it man. You just had a silent day...what if you are healing and this impedes that progress?