Retigabine (Trobalt, Potiga) — General Discussion

[Mpt]

This is not a miracle drug by any mean, it's just a somewhat close to what could work.

Hey benryu... or anyone else who might have any input... if tinnitus is caused by potassium channels, how would you explain residual inhibition from a sound, I use to be able to halt my tinnitus for 30 secs to a minute after listening to a matching tone, and I was wondering if a sound could have any temporary effect on these channels, etc that explains why tinnitus is absent for a time after the sound is withdrawn

As for a further update.. I had a cold for the past week and heard my tinnitus faintly while falling asleep in my quiet bedroom, but that has been pretty much the only time I've heard it recently, still taking the same dosage but I'm thinking about tapering down to a lower dosage in the next few months

 

[undecided]

@Mpt this is just my personal opinion, I'm not a doctor or anything, but here goes... It seems that any 'psychoactive' drug has a tendency to lose its effect over a period of time (the period depending on dosage, individual tolerance etc). Almost any benzo, antidepressant, anything that acts altering the chemistry of the brain will be effective for some time then gradually lose its potency.

Since you seem to have found an actual method to almost silence your tinnitus, maybe you should consider the fact that these kinds of meds tend to 'poop out'.

I know that I'd use retigabine (provided I could find it somewhere, which is impossible where I live) as a nice present to myself every now and then, the rest of the time I'd enjoy the funny noises knowing that I'm just a pill or two away from total silence.

Sorry if I'm being a total downer here, but it would appear that you are one of the first people in the history of humanity that is involved in curing tinnitus using existing pharmaceutical means. That in itself is a truly rare gift and you should really make the most of it for as long as you can (I hope indefinitely).

(I hope I didn't come off as offensive - that was certainly not my intent, English is a bit Greek to me).

 

[Christian78]

How is your T today?

It is stupid for me to report day by day because an @benryu said it is needed 3 weeks. MY tinnitus did not vanish as @Mpt or @Viking ... so i let it see in little more days today is maybe 6th day using 200 mg Trobalt, i can speak about aboundency side effects if you want to know..

Chris

 

[Christian78]

Mosquito??? I can't hear mosquito In fact, in the summer nights I am their blood supply. My ENT argues that tinnitus can not change and he gave me anti-depressants that are not served at all. I realized that the best doctors we already for many years. Only we can know what it means. They remain my unexplained fluctuations. Yesterday I was on the train and they were the strongest of the rails ... this morning I wake up and again 0 now are beginning and I'm not doing anything stressful, indeed, I was rubbing my bike! Mah

It looks doctors are our worst enemy, those low level ones, they know noting, they dont treat it promptly, they do nothing nether they consider it something problematic. WHAT THEY KNOW IS TO SAY: THERE IS NO CURE

 

[benryu]

It is stupid for me to report day by day because an @benryu said it is needed 3 weeks. MY tinnitus did not vanish as @Mpt or @Viking ... so i let it see in little more days today is maybe 6th day using 200 mg Trobalt, i can speak about aboundency side effects if you want to know..

Chris

Hey Christian, don't forget the primary effect of this drug (on the paper) is to control spikes, it can potentially reduce the T. but it's not specific enough to be efficient on a wide range of patients. I explained this point in a previous post.

Did it have any impact on your spikes at the moment?

 

[coolbeer]

How funny it is , My ent never said there is no cure , when i had the hearing test after i recovered from noise trama , my hearing returned to normal , hearing till 8000 hz all normal , and he said since ur hearing is normal , we just need to give u a few weeks of xanax and it will shut the hyperactivity and ur tinnitus will be gone , i asked him how is that possible , he said , when u take xanax , it interacts with the limbic system , further it acts on GABA , which will coz repolarization of hair cells nd ur ringing will slowly dissappear , i questioned him , that i read online that there is no cute , he said stop the online stupidity , dont read stupid posts online , nd he explained me further , that if there is no hearing loss till 8000 hz , tinnitus will definitely vanish ith xanax ,
the doctor is the director of a very reputated hospital in new delhi , he is a neck and hed surgeon also , and he has performed various cochlear implants on deaf people, he is very known doctor in delhi , since i was not interested in xanax as it hasnt cured anyone online , i didnt take his advice and now am on homeopathy ,
But what i could infer out of his logic is ,
that when u take xanax it increases ur GABA , and GABA is a calming brain chemical which reduces the hyperactivity caused by glutamate , thus it reduces ghe glutamate level and since glutamate is responsible for clossing of the pottasium channels , if glutamate is reduced to normal levels, wont it be possible that the pottasium channels start working again , because they are no longer being
supressed by glutamate , and wont it be possible that if we take xanax and retagabine together , wont it have a better impact , i know am talking stupid , but still , what are ur opinions ?

And yes , when i questioned him that what if my hearing loss is above 8000 hz as my tinnitus sound is a high frequency ringing , his answer was , any hearing loss above 8000 hz doesnt matter , i was like ya , why not

 

[benryu]

Hey benryu... or anyone else who might have any input... if tinnitus is caused by potassium channels, how would you explain residual inhibition from a sound, I use to be able to halt my tinnitus for 30 secs to a minute after listening to a matching tone, and I was wondering if a sound could have any temporary effect on these channels, etc that explains why tinnitus is absent for a time after the sound is withdrawn

As for a further update.. I had a cold for the past week and heard my tinnitus faintly while falling asleep in my quiet bedroom, but that has been pretty much the only time I've heard it recently, still taking the same dosage but I'm thinking about tapering down to a lower dosage in the next few months

No, unfortunately sound has no known positive effect on potassium channels, (maybe someone has an article ?) Anyway, when you hear a sound for a continuous time and stop it, this has some sort of residual effect on the auditory cortex, to put it simply it happens when the brain is going to look for an external sound as it got used to it for a a few seconds and ignore other internal sounds during this search. Let's say it's some consciousness lag !

 

[benryu]

How funny it is , My ent never said there is no cure , when i had the hearing test after i recovered from noise trama , my hearing returned to normal , hearing till 8000 hz all normal , and he said since ur hearing is normal , we just need to give u a few weeks of xanax and it will shut the hyperactivity and ur tinnitus will be gone , i asked him how is that possible , he said , when u take xanax , it interacts with the limbic system , further it acts on GABA , which will coz repolarization of hair cells nd ur ringing will slowly dissappear , i questioned him , that i read online that there is no cute , he said stop the online stupidity , dont read stupid posts online , nd he explained me further , that if there is no hearing loss till 8000 hz , tinnitus will definitely vanish ith xanax ,
the doctor is the director of a very reputated hospital in new delhi , he is a neck and hed surgeon also , and he has performed various cochlear implants on deaf people, he is very known doctor in delhi , since i was not interested in xanax as it hasnt cured anyone online , i didnt take his advice and now am on homeopathy ,
But what i could infer out of his logic is ,
that when u take xanax it increases ur GABA , and GABA is a calming brain chemical which reduces the hyperactivity caused by glutamate , thus it reduces ghe glutamate level and since glutamate is responsible for clossing of the pottasium channels , if glutamate is reduced to normal levels, wont it be possible that the pottasium channels start working again , because they are no longer being
supressed by glutamate , and wont it be possible that if we take xanax and retagabine together , wont it have a better impact , i know am talking stupid , but still , what are ur opinions ?

And yes , when i questioned him that what if my hearing loss is above 8000 hz as my tinnitus sound is a high frequency ringing , his answer was , any hearing loss above 8000 hz doesnt matter , i was like ya , why not

For Xanax there was a study in the early 90's that was unfortunately not replicated to my knowledge:
http://www.ncbi.nlm.nih.gov/pubmed/8343245

The Xanax molecule, the Alprazolam binds to the benzodiazepine site of the GABAA receptor, where it acts as a GABA agonist by increasing the permeability of chloride ions, leading to hyperpolarization and decreased excitability. It's not targeting one specific channel but could have theorically some effect.

The results of the study were quite good, but I STRONGLY doubt the methodology as well as the real long term impact on T. of such a treatement.
And I am not the only one:
http://www.ncbi.nlm.nih.gov/pubmed/7606078

Alprazolam drastically change the tolerance thereshold for basically anything, and it's likely it just give the illusion of modulating T.

Last but not least, the complications associated with alprazolam include drug dependency and difficulty of discontinuing use. A lot of patients had yo-yo effect when they stopped the drug.

 

[Christian78]

Hey Christian, don't forget the primary effect of this drug (on the paper) is to control spikes, it can potentially reduce the T. but it's not specific enough to be efficient on a wide range of patients. I explained this point in a previous post.

Did it have any impact on your spikes at the moment?

It had impact on spikes the most, then my t gets lower, and i can use now music resident inhibition treatment and it lower and stay lower much longer, sometime so much low i dont notice it is living room.

And side effects definitely, i dont have so much blurry vision, but i do function like CPU on half speed, have to walk slow, to speak slow, cant find correct words, almost choke because swallowing muscle stop to function, i lose memory like what happen few hours ago if i don't pay really good attention to memorize it, even hiccups after a pills that list like 20 minutes.

Anyway it is not treatment for someone who drives, uses brain a lot. Specially 2-3 hours after taking pill. I think much lower (side)effect is when you take it after food.

Dr. Charles Larges latest info:

The Autifony trials haven't been announced yet, as soon as we have any information it will be on our website – www.tinnitus.org and in our Quiet magazine.

Or you can contact Autifony - http://www.autifony.com/autifony-pipeline.asp

 

[SteveToHeal]

www.tinnitus.org is not Autifony website. That's all TRT stuff.

 

[dan]

www.tinnitus.org is not Autifony website. That's all TRT stuff.

Yes but its an excellent pool for candidates.

 

[SteveToHeal]

Yes but its an excellent pool for candidates.

True but who owns tinnitus.org? NOt Autifony. Looks like it is mainly punting TRT so would they advertise AUT00063 on a TRT website?

 

[Markku]

Christian78 said this earlier:

The Autifony trials haven't been announced yet, as soon as we have any information it will be on our website – www.tinnitus.org and in our Quiet magazine.

The URL is probably meant to be www.tinnitus.org.uk

Because the Quiet magazine is published by the BTA and tinnitus.org.uk is also their site (tinnitus.org is not).

 

[SteveToHeal]

Christian78 said this earlier:


The URL is probably meant to be www.tinnitus.org.uk

Because the Quiet magazine is published by the BTA and tinnitus.org.uk is also their site (tinnitus.org is not).

Thanks Markhu. The voice of reason. That now makes sense.

 

[lapidus]

@Markku Good to see you finally show up in this thread. What's your take on all this potassium channel stuff and this drug?

 

[Viking]

Trt is a gold industry consists of impostors, thieves and scammers. Distrust or avoid of all these association than conceal valuable information for their financial gain. I paid ATA to get the wrong advice, such as hearing aids, which have worsened my condition. I hope they will be indicted and remain out of work

 

[gebora]

@Viking Our advisors are sometimes our destroyers.. Last time my ENT said me about hearing aids.. I said NO! Why? When i have to avoid headphones, why can i use this?

 

[Christian78]

I seem to develop and resistance to side effects, i don't feel nothing when i take pill like before when i gel lost, cant talk or look, had hiccups and so on. This morning was sad but afternoon was nice, i was walking to a shop to take something and I almost did not hear t. A nice day today, although morning was a bit sad.

 

[rtwombly]

I seem to develop and resistance to side effects, i don't feel nothing when i take pill like before when i gel lost, cant talk or look, had hiccups and so on. This morning was sad but afternoon was nice, i was walking to a shop to take something and I almost did not hear t. A nice day today, although morning was a bit sad.

Good news. May I ask, are you stil on 200mg x 3 per day?

 

[Christian78]

Good news. May I ask, are you stil on 200mg x 3 per day?

Yes still 200x3 mg per day i never went to 300 x3 or more... it seems as time goes so side effect go away, and one feels better

 

[lapidus]

That's good to hear @Christian78
We're all rooting for you

 

[Christian78]

Hey benryu... or anyone else who might have any input... if tinnitus is caused by potassium channels, how would you explain residual inhibition from a sound, I use to be able to halt my tinnitus for 30 secs to a minute after listening to a matching tone, and I was wondering if a sound could have any temporary effect on these channels, etc that explains why tinnitus is absent for a time after the sound is withdrawn

As for a further update.. I had a cold for the past week and heard my tinnitus faintly while falling asleep in my quiet bedroom, but that has been pretty much the only time I've heard it recently, still taking the same dosage but I'm thinking about tapering down to a lower dosage in the next few months

I could do that when i had my initial T, and now also with meds Trobalt (without meds my T became resistant to residual inhibition), I think it was moment when audio cortex hear note that is of his tinnitus than neurons stop to misfire as there is outside input, effect was recorded in ancient Greece too, and well there are explanation... different for all, my was moving frequencies up or down , so I had to "chase it". I hope i said something of use ...Chris

 

[Dedas]

Hi Christian, I'm a fellow Swede. May I ask how you did get ahold of the Trobalt?

 

[Christian_B]

Hi Christian, I'm a fellow Swede. May I ask how you did get ahold of the Trobalt?

In Denmark it's buyable, are you sure it isn't the same in Sweden?

 

[Christian78]

Hi Christian, I'm a fellow Swede. May I ask how you did get ahold of the Trobalt?

Well first box i got from Serbia over good friend who is pharmaceut, second box i got over Croatia over good fried who knows a pharmaceut, then 200 mg and 100 mg boxes i got over cousin from Austria who works as pharmaceut, and i can get from hr although hers prices are higher, normally i get 100 mg for 45 euro...

That said, one can say connections...

 

[Dedas]

Thank you Christian!

But do they really help you? I would really like to try. This is hell as we all know.

 

[iAzra]

He said, "ok but we are going to do it my way, you will start with some more classic treatment for accute T. increase, 4 days of steroid

@benryu Which steroid did you get and what was the dosage? I'm having a spike for a week now and I am thinking about steroids though I dislike them a lot..

 

[benryu]

@benryu Which steroid did you get and what was the dosage? I'm having a spike for a week now and I am thinking about steroids though I dislike them a lot..

Hey iAzara, steroid won't do much for a spike I think, they are useful in the next 24h/48h of a recent increase related to an acoustic trauma. I was using prednisolone, high dosage for 4 days.

 

[Hudson]

Well first box i got from Serbia over good friend who is pharmaceut, second box i got over Croatia over good fried who knows a pharmaceut, then 200 mg and 100 mg boxes i got over cousin from Austria who works as pharmaceut, and i can get from hr although hers prices are higher, normally i get 100 mg for 45 euro...

That said, one can say connections...

@Christian78 , how is your tinnitus lately? You restarted your regimen of trobalt, right?

Thanks,

Hudson

 

[Christian78]

yes, i am on 200 mg last 7 days, well i sleep better, i take less sleeping pill and i dont use any clonopopin and i find my self to sleep better, to want to go out, to want to go to gym and i dont know it is strange, sometimes t is stronger sometimes not but not like ordinary t, some days t is in background i dont pay attention on it, it is not intrusive.