Retigabine (Trobalt, Potiga) — General Discussion

Well like I said already - this matter has been discussed enough (don't know why you wanted to continue) but I see that you are still running from responsibility.

Btw, you could have gotten Trobalt if you had gone to doctor with that document which you quoted and summarised it to the doctor. It would have given much more leverage than expressing the matter by saying "listen, I hear that this stuff from internet can cure T". This is what I've told people who have PMd me. Take this document, print it, learn it, understand it and summarise it to a doctor and most of them will prescribe you Trobalt.

https://www.researchgate.net/public...channel_openers_in_cultured_neuronal_networks

Have that document. Doctors looked at it and said it's done on mice and isn't proven in humans. Which is quite right, most things used on rats don't work on humans, look at Autifony's drug as an example. Anyway, I showed some other doctors and they just said isn't licensed for tinnitus so they can't give it to me...Trust me, it's nigh on impossible for me, otherwise I wouldn't have spent 1000's of pounds obtaining it via other means.

Actually, part of my reply is from that document. I've had it for years.
 
Have that document. Doctors looked at it and said it's done on mice and isn't proven in humans. Which is quite right, most things used on rats don't work on humans, look at Autifony's drug as an example. Anyway, I showed some other doctors and they just said isn't licensed for tinnitus so they can't give it to me...Trust me, it's nigh on impossible for me, otherwise I wouldn't have spent 1000's of pounds obtaining it via other means.

Actually, part of my reply is from that document. I've had it for years.

The tests on that document weren't done with mice (only cells from mice were used). Additionally you should have known that Autifonys animal model was flawed (as you should have known when you declared AUT00063 as a cure when trials were barely started) so don't use it as an example.

Because Trobalt is an approved epilepsy drug, that alone should prove its inhibiting effects and give the doctor atleast some clues (if they understand the pathology behind T).

I know that part of your reply is from that document. That is why I pasted the link. And if I recall correctly, @attheedgeofscience was the first one the present this document about year ago so what's the point of your comment "I've had it for years"? Does this comment translate to "ye, yea, I know these things"?

But I understand, I may have been lucky that I got Trobalt from the first doctor I talked to in this overregulated country. Imo if you are credible IRL and you can explain yourself and show that you understand the risks - doctor shouldn't have reason to deny prescription. But the hard thing IRL is that you don't have time to google 30min for good answers. You have to respond in couple of seconds with sufficient amount of certainty. If the doctor doesn't know what are you talking about and sees that you don't know either - they won't prescribe the drug.
 
The tests on that document weren't done with mice (only cells from mice were used). Additionally you should have known that Autifonys animal model was flawed (as you should have known when you declared AUT00063 as a cure when trials were barely started) so don't use it as an example.

Because Trobalt is an approved epilepsy drug, that alone should prove its inhibiting effects and give the doctor atleast some clues (if they understand the pathology behind T).

I know that part of your reply is from that document. That is why I pasted the link. And if I recall correctly, @attheedgeofscience was the first one the present this document about year ago so what's the point of your comment "I've had it for years"? Does this comment translate to "ye, yea, I know these things"?

But I understand, I may have been lucky that I got Trobalt from the first doctor I talked to in this overregulated country. Imo if you are credible IRL and you can explain yourself and show that you understand the risks - doctor shouldn't have reason to deny prescription. But the hard thing IRL is that you don't have time to google 30min for good answers. You have to respond in couple of seconds with sufficient amount of certainty. If the doctor doesn't know what are you talking about and sees that you don't know either - they won't prescribe the drug.

Well, you were quite lucky. My Doctor admitted he knew nothing about tinnitus, so really it were fruitless even telling him about trobalt. He didn't even know what a potassium channel modulator was. Anyway, all this doesn't matter now, as it's the past.
 
I had the same experience than Zechariah with my neurologist. I explain him my problem, I told him why Trobalt can help me (with a lot of documents and good verbal presentation).

I let him one week of reflexion and he said "I'm ok". That was the first doctor I saw fit Trobalt. He made me a prescription and he wrote on the paper "off label", and let's to try the drug.

I think I feel a bit better after one week at 900 mg. I don't know now if I have to reach 1,2 mg by day ?
 
I had the same experience than Zechariah with my neurologist. I explain him my problem, I told him why Trobalt can help me (with a lot of documents and good verbal presentation).

I let him one week of reflexion and he said "I'm ok". That was the first doctor I saw fit Trobalt. He made me a prescription and he wrote on the paper "off label", and let's to try the drug.

I think I feel a bit better after one week at 900 mg. I don't know now if I have to reach 1,2 mg by day ?

I never saw a neurologist, just a GP. Also, many people in the UK have tried fruitlessly to get the drug via GP and neurologists but never managed to get a prescription. There was one neurologist in London who prescribed it once and after people rang him/her and tried to get a prescription from that person he sadly said no. In the UK, they are worried they will get struck off. People on here need to remember we have different systems and regulations. It seems places in Europe outside of the UK, seem to get it quite easy, fortunate for them.
 
Which is quite right, most things used on rats don't work on humans, look at Autifony's drug as an example.
No. The AUT00063 compound didn't work because it was based on a flawed animal model (startle reflex model): they thought they were measuring a reduction in tinnitus - using animals - when in fact they were not (to the best of my knowledge). You could say that that the project was doomed to begin with (even before phase-II began). They - and we - just didn't know it...! Shutting the study down in a phase-II trial and based on the interim assessment shows the results were "ugly" (using the words of one of my sources).

It also makes you wonder how Autifony Therapeutics could have won several prizes for their science:

http://autifonytherapeutics.com/pub...-Biotech-Award-at-OBN-Awards-Dinner-FINAL.pdf

In contrast, and hidden deep within this lengthy financial statement of Auris Medical, you will find this little "gem" of information:
The NMDA receptor was first validated as a target for the treatment of tinnitus using an animal behavioral model of tinnitus triggered by salicylate, the active substance of aspirin. Salicylate is known to trigger temporary tinnitus when administered in high doses. The animal model demonstrated that local administration of different NMDA antagonists to the inner ear allowed for suppression of salicylate induced tinnitus. Together with INSERM, we developed a much more clinically relevant model of tinnitus induced by acute acoustic trauma, or AAT. Unlike salicylate-induced tinnitus, AAT triggers glutamate excitotoxicity and may lead to irreversible damage to sensory cells. It does not result in tinnitus in all cases, but where it sets in, it may be permanent. In our pre-clinical trials, we demonstrated that AM-101 was able to suppress this type of tinnitus. Further preclinical work demonstrated that tinnitus could be suppressed even when drug was administered after the onset of tinnitus.
Source: www.sec.gov/Archives/edgar/data/1601936/000119312514253454/d684505df1.htm

The above is no doubt contributing to the reason why Auris Medical has managed to lead their AM-101 compound to phase-III - and - in my opinion also the reason why Auris Medical is best otology pharma in-the-world: they know exactly what pitfalls to avoid. Working with tinnitus using animals models is particularly tricky and Auris Medical knows that...

Doctors looked at it and said it's done on mice and isn't proven in humans.
The work by Prof. Moore is an in vitro model: it's not done on animals at all...!
 
No. The AUT00063 compound didn't work because it was based on a flawed animal model (startle reflex model): they thought they were measuring a reduction in tinnitus - using animals - when in fact they were not (to the best of my knowledge). You could say that that the project was doomed to begin with (even before phase-II began). They - and we - just didn't know it...! Shutting the study down in a phase-II trial and based on the interim assessment shows the results were "ugly" (using the words of one of my sources).

It also makes you wonder how Autifony Therapeutics could have won several prizes for their science:

http://autifonytherapeutics.com/pub...-Biotech-Award-at-OBN-Awards-Dinner-FINAL.pdf

In contrast, and hidden deep within this lengthy financial statement of Auris Medical, you will find this little "gem" of information:

Source: www.sec.gov/Archives/edgar/data/1601936/000119312514253454/d684505df1.htm

The above is no doubt contributing to the reason why Auris Medical has managed to lead their AM-101 compound to phase-III - and - in my opinion also the reason why Auris Medical is best otology pharma in-the-world: they know exactly what pitfalls to avoid. Working with tinnitus using animals models is particularly tricky and Auris Medical knows that...


The work by Prof. Moore is an in vitro model: it's not done on animals at all...!

Thanks for the correction. They were done in test-tubes, got you.
 
based on a flawed animal model (startle reflex model)

In Tzounopolous' recent HCN paper there is a section addressing the limitations of this model. I don't think the conclusion is that the model is not useful.

My opinion is that the 0063 compound didn't work because most people's tinnitus is not centered around their cochlea (a relatively passive organ).
 
In Tzounopolous' recent HLN paper there is a section addressing the limitations of this model. I don't think the conclusion is that the model is not useful.
I am going to take a passive stance on that one: I have an impressive list of resources who help me out with information when I need it (so I will let them do the talking). There is (and was) consensus that the startle reflex model may lead to the wrong conclusions. Besides the resources who help me, there is also consensus within the broader scientific community that startle reflex is problematic. I shared info on that here, for instance:

https://www.tinnitustalk.com/thread...g-loss-and-tinnitus.6516/page-111#post-142483

I hope, trust, and pray, that Prof. Tzounopoulos has done his homework when it comes to animal testing. Indeed, the "problem" that should concern most people (with tinnitus) is not so much the animal testing, but whether SciFluor intends to actually trial the SF0034 compound for tinnitus in the first place. At the moment, I cannot see too many positive vibrations in that direction.

I have already commented on the aspects above previously. For those who are interested, there is information on that within the SciFluor thread: search "Kerrisdale" and there is also information about SciFluor within the awareness section (search "missed opportunities").
 
I hope, trust, and pray, that Prof. Tzounopoulos has done his homework when it comes to animal testing.

Believe me, he has done a lot of homework: http://journal.frontiersin.org/article/10.3389/fnsys.2012.00035/full

Different from traditional research in the medical/biological disciplines I also wonder why there is so little focus on research that is based on 'Big Data'. With this I mean the deep analysis of meta-information behind research data that could deliver clues about the core mechanism(s) of T.

A little hypothetical example:
  • A research paper aimed at drugs affectting T conclude that Retigabine and Lidocaine could suppress T.
  • On the other hand a biomedical research paper about the effects of Retigabine on different neurological cell types conclude that cell types X, Y and Z are affected (without even mentioning T).
  • A comparable biomedical research paper about the effects of Lidocaine on different neurological cell types conclude that cell types V, W and X are affected (also without mentioning T).
The result of this 'Big Data' analysis is that cells of type X are the common denominator for different research papers that would have been looked unrelated if they were analysed individually.

Any experts on data analysis in the room who see potential in this approach??
 
Any experts on data analysis in the room who see potential in this approach??
I'm definitely not an expert on big data analysis; my company has much brighter minds than I for that. However I will say that format of data is a problem here.

Meaning, research papers are presented as full-text. So, two or three different papers may be about, largely, related topics, and they might all say some basic fact like "fluoxetine is a 5ht2c agonist". But, they will use different wording, phrasing, etc.

Fundamental to being able to do "big data" analysis, is having information in a consistent, homogenous format so that you can use strategies like MapReduce to produce insights about the nature of that data. Human-readable linguistic text is not a consistent, homogenous format. The problem of converting human-readable text into something that can be procedurally rendered into a homogenous format is generally known as natural language processing. It is a hard problem. The tools to do that kind of analysis have gotten much better in the past couple decades, but are still nowhere near the point of being able to easily consume 10,000 different papers about the same subject and compile their results into a consistent format. My total guess is that it might be possible to do that to some significant degree in another 30-40 years... but there's always room for some huge breakthrough that completely changes the game.

There would also be room to use mechanical turks to do this; basically hire a bunch of people to read papers and compile metadata about them in a common format. Google has done exactly that with certain kinds of image recognition, literally paying people to spend hours documenting and double-checking house address numbers in photographs and things like that. However, that's work which can be done by anyone with functional eyes and hands; a careful metadata analysis of medical research texts would require a much more educated workforce, and is therefore a much harder undertaking.

Personally, I think the place I would like to see effort put, would be in getting everyone's medical records into an identical format (which is already, more or less, underway) -- and then getting it into some kind of searchable database that anonymizes things to a degree where the obvious privacy concerns could go away, but retains enough data for deep statistical analysis. More or less, if you had such a database, then you could fairly trivially answer hard questions like "are there more clusters of cases of parkinson's disease in areas where compound X is more common in the water supply?", "are people seen less frequently for ongoing tinnitus complaints when they happen to be on drug Y for other reasons?" and things of that form. It's a little maddening to me that this is not already happening, simply because the technology for this exists -- and has existed for decades. The things preventing that from happening are privacy concerns, along with the general sluggish pace of change in the paperwork side of the medical industry.
 
Fundamental to being able to do "big data" analysis, is having information in a consistent, homogenous format

This is absolutely a challenge for effective Big Data analysis. Nevertheless I know that different search engines use deep learning to produce effective results for natural language input. Maybe borrowing the right algorithm can make things more easy for medical Big Data research.

It's a little maddening to me that this is not already happening, simply because the technology for this exists -- and has existed for decades. The things preventing that from happening are privacy concerns, along with the general sluggish pace of change in the paperwork side of the medical industry.

Totally agree. A good proof of concept for what is possible is Google Trends (tool for analysing search characteristics, including natural language input, on google.com). Just type tinnitus in the search bar to see the potential...
 
Ok friends, I've got an issue :(

I started Trobalt on Thursday night with only 50mg. Then I did 50 + 50 + 50mg Friday, Saturday and Sunday.

On Sunday I started notice a pretty severe case of visual snow (thousands of tiny shiny dots obstructing my view) plus ghosting (sharp edges give of a "shadow"). I know I had some sort of visual disturbance since before but never ever had problem with it or even think about it. I don't know why my mind suddenly noticed it. Of course it became an issue and I got huge anxiety and Googled everything since then. I didn't really think this was linked to Trobalt as the dose was so low. On Monday I had another 50 + 50 + 50, on Tuesday (my lowest T day in a looong time) it as 100 + 50 + 100 and Wednesday I quit Trobalt with only 100 + 50.

I can't understand what happened at all. I don't think my vision got worse, I only noticed it. Like some people had T but never noticed it until someone told them the condition exists and they notice it and it becomes a problem.

I have read in this thread a theory that the brain "re-learns" or "resets" while under Trobalt, so maybe that's what happened? Another possibility is that I've been really really tired and exhausted the last week and I remember that my vision got worse when I've been really tired before. And another thing, about two weeks ago (about a week before starting Trobalt) at work I had this weird situation where my vision starting to go black. It started on the putside of my vision working itself inwards and I hardly could see anything. It freaked my out but it only lasted for a couple of seconds. Maybe that's when things started or got worse, but I only noticed it this Sunday. Many possibilities but not many answers...

I've been off Trobalt two days now but no change. I will try to continue with my life and hopefully I will build up my filter again to the visual snow or that it just gets better. Worth mentioning is that a lot of people who have VS also have T. Very weird why that is.

I've read somewhere (but without source) that Retigabine is a treatment for VS, but I can't find any more facts/data on this.

I will not continue with Trobalt until I know that the medication wasn't the cause of this.

Any theories or thoughts about this are appreciated.

Take care guys!
 
@PatrickG

In january i took the same dose as you (50-50-50) just for a week or so. I had some Side effects, even on this low doses.

For me also the visual snow that was already there became more prominent. This has not really subsided yet, i guess my brain is tuned in on them now. I also noticed one floater which i had never seen before. One night there was an explosion of light in my eyes while i was falling asleep. And at one point in the daytime i was looking at my white bathroom door and i saw lights moving in the way my eyes were moving. Just like there was a disco ball on the ceiling, in the colors blue white and green.....

I was hasitating to post about this earlier because it seems crazy to have this on such a low doses. Especially the disco ball effect scared the shit out of me.

I must say i am extremely sensitive to (party) drugs but i am amazed how some people take high dosages of trobalt with not to many side effects....
 
@PatrickG

In january i took the same dose as you (50-50-50) just for a week or so. I had some Side effects, even on this low doses.

For me also the visual snow that was already there became more prominent. This has not really subsided yet, i guess my brain is tuned in on them now. I also noticed one floater which i had never seen before. One night there was an explosion of light in my eyes while i was falling asleep. And at one point in the daytime i was looking at my white bathroom door and i saw lights moving in the way my eyes were moving. Just like there was a disco ball on the ceiling, in the colors blue white and green.....

I was hasitating to post about this earlier because it seems crazy to have this on such a low doses. Especially the disco ball effect scared the shit out of me.

I must say i am extremely sensitive to (party) drugs but i am amazed how some people take high dosages of trobalt with not to many side effects....

Thanks for reply @Onnie . This is a serious side-effect that people should know about. Especially if they have VS or any visual disturbances since before.

How long were you taking Trobalt, how long have you been off it and has the VS subsided anything at all during this time?

I was happy to have Trobalt in my life but sadly it was the opposite. Weird that there aren't any reports about this other than double vision. Anyone here had the double vision side-effect and how long after did it disappear?
 
I read report about it, only some people with disturbance before trobalt. I have no problem at high dosage and I check my eyes before trobalt and 20 after the beginning of my trial.
 
Thanks for reply @Onnie . This is a serious side-effect that people should know about. Especially if they have VS or any visual disturbances since before.

How long were you taking Trobalt, how long have you been off it and has the VS subsided anything at all during this time?

I was happy to have Trobalt in my life but sadly it was the opposite. Weird that there aren't any reports about this other than double vision. Anyone here had the double vision side-effect and how long after did it disa
Patrick I reported also all of these during my last month of taking trobalt and that is why I stop. In your case it is very worrisome that your vision became black from the periphery to the center because that can be a sign of retinal dettachment. About the snow and the floaters I think that trobalt affects the visual neurons makING the more noticible. I also inform that I had hiper active bladder which became cure while I was taking trobalt. Also I did get blurry vision and only that sometimes my presbyiopia got better and sometimes my myopia got better so it my be affecting the muscles that accommodate the lens of the eyes. Please go see and ophtalmologist
 
@PatrickG I got a completely different set of side effects from relatively short term, low dose trobalt, and they took about 8 weeks to clear up.

Try not to stress. As you have alluded to, like tinnitus, some small amount of visual snow is something which many (most?) people can notice under the right circumstances, and I do believe that fixating on such things can train the brain to discern them more easily.

As I told you in PM (but will state again here for the benefit of others), I have had severe, constant visual snow for a decade and a half, and it literally hasn't impacted my life in any significant way since the first year. For whatever reason it was much easier to adjust to rapidly than tinnitus.
 
Patrick I reported also all of these during my last month of taking trobalt and that is why I stop. In your case it is very worrisome that your vision became black from the periphery to the center because that can be a sign of retinal dettachment. About the snow and the floaters I think that trobalt affects the visual neurons makING the more noticible. I also inform that I had hiper active bladder which became cure while I was taking trobalt. Also I did get blurry vision and only that sometimes my presbyiopia got better and sometimes my myopia got better so it my be affecting the muscles that accommodate the lens of the eyes. Please go see and ophtalmologist
Hey @papu :) I thought it was only floaters you had. I don't have any increase in floaters, only static/noise and ghosting. I called an eye doctor and he said to first do all checks at a optician (pressure, retina etc.). So I did and everything is fine thank god! Now I will stay away from all drugs and just continue to live healthy and accept that I have to live with T and maybe one day it'll subside or I habituate.
 
Reading your posts above makes me think, can't you cut your auditory nerve and be gone with T if you're on the edge, instead of killing yourself slowly with numerous medications with severe side effects. Better deaf in silence than dead.
https://www.tinnitustalk.com/threads/cochlear-nerve-section-cures-some-peoples-tinnitus.1792/
point it is in the head, then I will not hear no outside stimuly + my t will go up and i will be finished. that practice is not used. an no one cutses nerve but gentamicin injection to the cohlea...
 
Thanks for reply @Onnie . This is a serious side-effect that people should know about. Especially if they have VS or any visual disturbances since before.

How long were you taking Trobalt, how long have you been off it and has the VS subsided anything at all during this time?

I was happy to have Trobalt in my life but sadly it was the opposite. Weird that there aren't any reports about this other than double vision. Anyone here had the double vision side-effect and how long after did it disappear?

I had only been taking it for a week or so, 3x50 a day. Been off it since 18th of January. It has not subsided but it does not bother me that much. T is nr 1 bothersome... I did not have double vision. Although I did drive my parents car into a fence during that week. I forgot I was not supposed to drive...

Apart from all this I also experienced a hot feeling in what I think was my bladder coming and going, not constantly. Never had that before.

Also mentally my feelings went from lethargic to very emotional and having episodes where I could do nothing but cry.

There were also some positive effects for me. After that week on that low doses my chronic ear pain (that I had for 10 months) was and still is GONE. Also the feeling of fullness, also present for 10 months, GONE. Could be a coincidence, but I don't thinks so.

You might think I'm crazy but all these things were very different from how I normally 'function'. So I am still amazed that people can take high dosages of trobalt, looking at what side effectes I experienced on baby-doses.
 
@Onnie

I feel quasi no side effects (eat more/vivid dreams/drunk feeling after taking pills) and a few positive effects (reactive T/progress for my T), I'm on 1200mg.

That's good for your fullness and chronic ear pain. Did you have hyperacusis ?

I agree, some people burst at 50 TID, and others like me feel no very bad side effects on 1200mg. Fingers crossed that continue & I can have some real improvement.
 
So I tapered up to 200mg TID in 3 days (100mg TID on day 1, 150mg TID on day 2 and 200mg TID on day 3). I had some side effects on my 2nd and 3rd 150mg dosage. They were dizziness and slight slurred speech. Most of the time the cognitive ability is good, can write and spell well. And it kind of feels like being a little high at times. I have no idea what being high feels like, but I guess that's a very light version of it. Maybe even super light mania, which felt good.

However, I also haven't had any real improvements either. I feel like at times I can ignore it easier, so quality of life has improved slightly. But nothing else so far. Has anyone else had a similar experience like this? I'm wondering what I should conclude from this... It's really weird cause I expected some kind of effect, but it really has been close to zero. If I was taking this drug as part of a clinical trial, I'd be convinced that it's a placebo.

Anyways, in case I won't experience any severe side effects, I'll stay on the drug and see what happens. Either my brain will allow it to do its magic only after a while as it has for a few others in the user experience section or it just doesn't give a shit. Will write a user experience report in a while.
 
So I tapered up to 200mg TID in 3 days (100mg TID on day 1, 150mg TID on day 2 and 200mg TID on day 3). I had some side effects on my 2nd and 3rd 150mg dosage. They were dizziness and slight slurred speech. Most of the time the cognitive ability is good, can write and spell well. And it kind of feels like being a little high at times. I have no idea what being high feels like, but I guess that's a very light version of it. Maybe even super light mania, which felt good.

However, I also haven't had any real improvements either. I feel like at times I can ignore it easier, so quality of life has improved slightly. But nothing else so far. Has anyone else had a similar experience like this? I'm wondering what I should conclude from this... It's really weird cause I expected some kind of effect, but it really has been close to zero. If I was taking this drug as part of a clinical trial, I'd be convinced that it's a placebo.

Anyways, in case I won't experience any severe side effects, I'll stay on the drug and see what happens. Either my brain will allow it to do its magic only after a while as it has for a few others in the user experience section or it just doesn't give a shit. Will write a user experience report in a while.

i didn't feel anything until 300mg TID. a 200 mg pill did nothing for me. i think you should wait till you get to a 300mg TID or 350mg TID to draw any conclusions. good luck.
 
@Onnie

That's good for your fullness and chronic ear pain. Did you have hyperacusis ?

I think so, and have had it for a long time. Maybe it's more a very low tolerance to sound. For me it does not include ear pain following a certain sound. But I have a sort of 'spy' hearing. I was a very anxious kid and every evening I would lay in bed, anxious, listening to the frightening sounds of our house. I think for me that was the start of a life where my brain would be focussed to much on all audiological input. Cannot tolerate loud sounds. A speaker call on my i phone is to loud when te volume is on one stripe. Also certain softer sounds will make me leave a room, someone touching plastic packaging, eerie high pitched sound effects in the wal king dead, the high pitched sounds some electronical devices make, certain voices and so on.

This was a lot less while taking trobalt, maybe due to the anxiolytic or relaxing effect of the drug. While on it I did not have to be carefull with plates, cutlery and so on because I just didn't care..
 

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