Retigabine (Trobalt, Potiga) — General Discussion

#722
Just coming into my mind:
Wouldn't it make sense informing GSK and Autifony on this?
So they could do more research on this.
At least it seems there is something in this drug that has positive effect on T.
If they could develop a drug onto this (with less side effects), this would become their next cash cow.
But maybe this is what Autifony is already working on.
Thanks Christian for your efforts and keeping us informed.
I am happy for you that you have at least one quiet day.
 
#723
Martin69 said:
Just coming into my mind:
Wouldn't it make sense informing GSK and Autifony on this?
So they could do more research on this.
At least it seems there is something in this drug that has positive effect on T.
If they could develop a drug onto this (with less side effects), this would become their next cash cow.
But maybe this is what Autifony is already working on.
Thanks Christian for your efforts and keeping us informed.
I am happy for you that you have at least one quiet day.
Click to expand...

Yes, from my understanding this is what Autifony is doing. I think Benryu has explained it earlier in the thread. But why more researchers arent all over this potassium channel approach is beyond me.
 
#725
Christian78 said:
He is having problems with kidneys.
Click to expand...

How's your tinnitus today? I might be mistaken, but is the idea here that we would all do a treatment regimen of Retigabine, and it's supposed to have long lasting effects? Supposedly reset the brain's plasticity to be in a more normalized state with regards to auditory processing?
 
#726
Hudson said:
How's your tinnitus today? I might be mistaken, but is the idea here that we would all do a treatment regimen of Retigabine, and it's supposed to have long lasting effects? Supposedly reset the brain's plasticity to be in a more normalized state with regards to auditory processing?
Click to expand...

Well I started again 200x3 2 days , yesterday it had quite moments hard to find high tones, this morning I almost did not hear T, but i need to use it min 3 weeks, louder t afternoons-evening but how to say, it is more tolerant and not so intrusive and I sleep tighter. we see as it goes, I don't wanna do do some jumpy report on 2 days because I believe you might get wrong information.

I was on Trobalt 9 days and i was on low dosage so i went to reduction 5 days, and i got 2 boxes now and i can try it more weeks, and i will take few more. It is strange why we cant brake it/cut is but i believe they have shell of slower release as they have reaction after 1-1,5 hours after taking pill.
 
#729
@Lep to be fair, we don't know if your blurry vision would have continued, or if Trobalt would have had a positive effect in your case. The literature states that several side effects, including blurred vision, are likely to occur, but usually disappear as your body adjusts to the medication. In the end it is up to you to weigh the dangers with the potential benefits.

@Christian78 we know Trobalt does not have a time-release coating. It says in that same document you scanned that it is immediate effect. The gradual increase in dosing is to sensitize your brain to it while avoiding to the extent possible the side effects. The no cutting thing is just plain greed, IMO. The company can say that, then the patients will have to buy more pills
 
#732
Lep said:
@rtwombly yes but in my case the side effect wasn't improving in 3-4 days,maybe it was worsening...maybe I will try again in the future if other drugs don't work.
Click to expand...

@Lep, has your blurred vision improved since you've been off of Trobalt? Have you experienced anything since getting off the drug, or are you back to where you were before you took the drug?

@Viking, how are your doing since you've stopped Trobalt? Has your T returned to its normal level, or has there been a permanent effect?
 
#734
Lep said:
@rtwombly yes but in my case the side effect wasn't improving in 3-4 days,maybe it was worsening...maybe I will try again in the future if other drugs don't work.
Click to expand...

Try one pill of paracetamol, and try to use bigger letters, can you send me inside message what side effect you had? and how fast you started medication. day by day dosage
 
#735
Christian78 said:
Try one pill of paracetamol, and try to use bigger letters, can you send me inside message what side effect you had? and how fast you started medication. day by day dosage
Click to expand...

tell me, how was your tinnitus on 3 days before increasing your retigabine dosage and now, are you satisfied, do you hear it in normal situations, for instance while reading something with no music on a day?
 
#736
Hengist said:
tell me, how was your tinnitus on 3 days before increasing your retigabine dosage and now, are you satisfied, do you hear it in normal situations, for instance while reading something with no music on a day?
Click to expand...


well i would say the same, i think Trobalt needs to be used longer, satisfaction now goes to better sleep, and lower t, it did not clear t totaly.
 
#737
I wish I could do a simple question to all of you about my absurd and debilitating tinnitus. Ever since I have suffered has always responded to drug therapy and especially did not exceed 80-90 dB in the worst days. Floated from right to left and the right was always the worst. After 7 years of "happy coexistence", last year, in June 2013, I applied the much-publicized hearing aids thinking they could help even more. After a month of use tinnitus are crazy. They are so violent as to provide migraine and tears of despair. I'm well over a year. I do not respond to any more medication. In November 2013 I removed the prosthesis. I want to say one thing: In previous years I have suffered many disappointments, stress, dead friends, and much more tinnitus but never moved from their level, leaving me to live a decent life on the whole. What may have happened with the much acclaimed hearing aid? All ENT specialists say they can not have been them, but for me and for those who know me like my family, it is much more than a coincidence. A final example: last Friday I felt terrible, crippling tinnitus 140dB. A folly. The day after .... NOTHING ... SILENCE! Only a hiss on the left. Sundays are back with all their might, and I almost had to take 5mg of clonazepam to try to stay calm. Thank you all for your comments.
 
#738
Can someone recommend a way for me to get retigabine? I live close to the states, I can drive down easily. Should I be contacting a private doctor in the US before hand? Can I bring it back over the boarder once I have it? Or is this something I would have to try down there (extended stay)?

I have a private doctor here in Canada that can not seem to bring it in for me, it is not available in Canada. My doctor might be dangling the carrot sort of speak, he says he is trying, meanwhile he wants me to pay thousands for general health tests and to "work with him" if I want his help with retigbine. I feel like I might be being taken advantage of with this false hope of him getting retigabine.

I have the means, and the time, I just need a plan.

Any suggestions would be much appreciated.

Thanks
 
#739
Telis said:
Can someone recommend a way for me to get retigabine? I live close to the states, I can drive down easily. Should I be contacting a private doctor in the US before hand? Can I bring it back over the boarder once I have it? Or is this something I would have to try down there (extended stay)?

I have a private doctor here in Canada that can not seem to bring it in for me, it is not available in Canada. My doctor might be dangling the carrot sort of speak, he says he is trying, meanwhile he wants me to pay thousands for general health tests and to "work with him" if I want his help with retigbine. I feel like I might be being taken advantage of with this false hope of him getting retigabine.

I have the means, and the time, I just need a plan.

Any suggestions would be much appreciated.

Thanks
Click to expand...

@Telis, I asked a close doctor friend of mine if he would write me a prescription and he declined, noting that he did not know enough about the drug, that the side effects were enough to be concerned about, and mostly that there was no published evidence that it will work for tinnitus. he is a good friend and has written me prescriptions for many other drugs in the past, so i imagine that it would be very difficult in general to get a doctor to agree to giving this prescription. he suggested that i find a neurotologist or neurologist that would be more amenable to the 'tinnitus is a neurological problem' camp (a camp which excludes many ENTs or psychiatrists). what would be particularly helpful is if they have experience with epilepsy, and especially if they have prescribed retigabine to their epilepsy patients. since you may find that contacting random neurologists by phone or email difficult in receiving a response, he recommended asking the physicians assistants or the nurse practitioner to get that information.
i have a lot of doctors in my family so if push comes to shove i am sure i can get the drug, but i would rather get it prescribed from official channels. i will probably try retigabine later this year, i am waiting to see how the autifony trials go, and i probably will get another round of the am-101 drug to see if it reduces my volume even further. i am also hoping to see how some of the other people on this forum fare with retigabine... the results so far give me hope. hope this info helps.
 
#740
lapidus said:
Yes, from my understanding this is what Autifony is doing. I think Benryu has explained it earlier in the thread. But why more researchers arent all over this potassium channel approach is beyond me.
Click to expand...

Most of the big ones are lol
It's just they all bet on different stuff related to the Glutamate/Potassium interaction

GSK, Pfizer Venture --> autifony (Potassium)
http://www.imperialinnovations.co.u...ny-initiates-phase-i-trial-treatment-hearing/
(I have no doubt this one will be a big winner) :p

Novartis --> BGG492 (quisqualate receptor linked to glutamate & K channels)
(Could not get any results on this one, I have little hope for this approach)

Roche --Auris AM101 (glutamate)
(Still in late trial, but could help some people with accute T. or at least reduce the T. severity)
 
#741
#743
Lep said:
Am I the only guy whose therapy was unsuccessful? Damned blurred vision...this is possibly a miracle drug and I can't take it...
Click to expand...

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

  • Despite a drug being potassium channel opener, it has to be very precise to work.
  • Flupirtine doesn't act on any sub unit related to T. ( So no possible impact)
  • Retigabine acts on interspike interval, meaning less T. spikes and it can possibly repolarize the action potential for some people. But the sub unit range is too wide with numerous side effects. (so it can work to stabilize T. and decrease it to some extent, but is not specific enough to be viable.)
  • AUT00063 acts directly on the repolarization and is much more precise, so it's a viable solution providing it works as expected :)
Click to expand...
 
#744
@Telis , I've looked into it. I'm trying to find out if they have Retigabine in Mexico, because, I cannot afford the ridiculous US price, although I'm kinda sure Mexico dont have it either.
I know Russia has it and some other EU countries.
Maybe we could pool our forum's resources and make a list of countries of availability.

You can bring in to Canada a 3 month's supply Rx'ed by a doctor with your name on the boxes-at least that's the policy for Canadians returning from Mexico.
Of course you could always hide them inside your car's interior trim - you will not get caught even with dog sniffers (they are'nt trained to detect Potiga lol).
Best option would be for you to start 1 month therapy in the USA and bring back the rest legally (if you're going to do a 16 week @benryu course.

Since when do we have "private" doctors in Canada?
Potiga was pulled off the Canadian market by Health Canada, so even if it was possible for your doc to bring in the drug, he would have to go thru a lot of red tape.
 
#745
I hope not to be misleading. I found this old article that I had saved on my computer. I remember that when I was using my T hashish was much less strong. Again it comes to potassium channels, and this is an article of 2008

hemp

The feelings of mild euphoria, relaxation, and amplified auditory and visual perceptions produced by marijuana are almost exclusively due to its effect on the cannabinoid receptors in the brain. These receptors are present almost everywhere in the brain, and an endogenous molecule that binds to them, of course, has been identified: anandamide. It is therefore with the same kind of mechanism as in the case of opiates that bind directly to the receptors for endorphins, the body's natural morphines.

Anandamide is involved in regulating mood, memory, appetite, pain, cognition, and emotions. When cannabis is introduced into the body, its active ingredient, delta-9-tetrahydrocannabinol (THC), may therefore interfere with all these functions.

THC begins this process by binding to CB1 receptors for anandamide. These receptors then alter the activity of several intracellular enzymes, including Camp, whose activity is reduced. Less cAMP means less protein kinase A. The reduced activity of this enzyme influence potassium channels and calcium so as to reduce the amount of neurotransmitters released. The general excitability of the neural networks of the brain is thus reduced.

However, in circuit prize, just as in the case of other drugs, more dopamine is released. As with opiates, this paradoxical increase is explained by the fact that the dopaminergic neurons in this circuit does not have CB1 receptors, but are normally inhibited by GABAergic neurons that do not have them. The cannabis eliminates this inhibition by neurons and GABA then activates dopaminergic neurons.
 
#746
Hudson said:
I have a little test for you. If you put one of the pills in your mouth and it dissolves within 30 seconds, cutting it won't any difference. If you put it in your mouth and it stays solid for longer than a couple minutes, cutting it might make a difference. Pharmacists by nature tell people to not cut pills unless they are scored, even then, they suggest not cutting it further. They live by the mantra that the manufacturer has made the perfect product.
Click to expand...


I believe they want to force patients to buy 100 mg and so on even that they may not need it, but they want to force us to take it in bigger dosages, and pay for it. GSK is very greedy company.
 
#747
Viking said:
I hope not to be misleading. I found this old article that I had saved on my computer. I remember that when I was using my T hashish was much less strong. Again it comes to potassium channels, and this is an article of 2008

hemp

The feelings of mild euphoria, relaxation, and amplified auditory and visual perceptions produced by marijuana are almost exclusively due to its effect on the cannabinoid receptors in the brain. These receptors are present almost everywhere in the brain, and an endogenous molecule that binds to them, of course, has been identified: anandamide. It is therefore with the same kind of mechanism as in the case of opiates that bind directly to the receptors for endorphins, the body's natural morphines.

Anandamide is involved in regulating mood, memory, appetite, pain, cognition, and emotions. When cannabis is introduced into the body, its active ingredient, delta-9-tetrahydrocannabinol (THC), may therefore interfere with all these functions.

THC begins this process by binding to CB1 receptors for anandamide. These receptors then alter the activity of several intracellular enzymes, including Camp, whose activity is reduced. Less cAMP means less protein kinase A. The reduced activity of this enzyme influence potassium channels and calcium so as to reduce the amount of neurotransmitters released. The general excitability of the neural networks of the brain is thus reduced.

However, in circuit prize, just as in the case of other drugs, more dopamine is released. As with opiates, this paradoxical increase is explained by the fact that the dopaminergic neurons in this circuit does not have CB1 receptors, but are normally inhibited by GABAergic neurons that do not have them. The cannabis eliminates this inhibition by neurons and GABA then activates dopaminergic neurons.
Click to expand...


But is it not that in New Zeeland they test MDMA the component from weed for possible cure of tinnitus?
 
#748
Viking said:
I wish I could do a simple question to all of you about my absurd and debilitating tinnitus. Ever since I have suffered has always responded to drug therapy and especially did not exceed 80-90 dB in the worst days. Floated from right to left and the right was always the worst. After 7 years of "happy coexistence", last year, in June 2013, I applied the much-publicized hearing aids thinking they could help even more. After a month of use tinnitus are crazy. They are so violent as to provide migraine and tears of despair. I'm well over a year. I do not respond to any more medication. In November 2013 I removed the prosthesis. I want to say one thing: In previous years I have suffered many disappointments, stress, dead friends, and much more tinnitus but never moved from their level, leaving me to live a decent life on the whole. What may have happened with the much acclaimed hearing aid? All ENT specialists say they can not have been them, but for me and for those who know me like my family, it is much more than a coincidence. A final example: last Friday I felt terrible, crippling tinnitus 140dB. A folly. The day after .... NOTHING ... SILENCE! Only a hiss on the left. Sundays are back with all their might, and I almost had to take 5mg of clonazepam to try to stay calm. Thank you all for your comments.
Click to expand...


MY ENT said to me that maximal loudness of tinnitus is like sound of mosquito, imagine that, and the went on some ENT komposium where they discussed tinnitus in Europe, and those are there to help us!!!! No strange we suffer
 
#750
Christian78 said:
MY ENT said to me that maximal loudness of tinnitus is like sound of mosquito, imagine that, and the went on some ENT komposium where they discussed tinnitus in Europe, and those are there to help us!!!! No strange we suffer
Click to expand...
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
 

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