Retigabine (Trobalt, Potiga) — General Discussion

#3,331
Hey people.....Not trying to purposefully aggravate anyone/everyone but there sure is a lot of wild talk really, based on what I consider to be very minimal and limited information.

- Yes, some people have had a hard time on Trobalt.
- Yes, some people had to give it up. (Me included, as it was no just supply, but the > H freaking me out.)
- Yes, how people react is all over the map.
- Yes, dose to effect relationship is a total zoo.
- Yes, it's a nasty drug (for many) but we knew that going in.

But, look at how small our trialee sample is!!! It is nothing hardly. Way too small to be anything other than "pioneeringly informative"...and indeed it has been. We have learned a lot from way back at the beginning of this thread. We knew next to nothing about Kv channels and how this drug would work, or even if it would at all. Matt could have been some really goofy, good luck, timing placebo. Though I personally never believed that.

And...
- We still have people trying it and holding to pretty high dosages and doing OK...maybe a bit "high", but OK.
- We have had no-one reporting blue lips and Werewolf eyes, so far.
- We have insufficient pre-Trobalt retinal scans v. Trobalt use scans on enough trialees to conclude anything.
- We have had far less urinary retention than expected.
- We have had potential kidney issues, but the degree of accurate pre-Trobalt kidney status is vague at best.
- We have mood stuff happening, but with zero real cognizance and data rating on pre-Trobalt mood evaluation.
- We have almost zero idea of what recreational drugs (Ecstasy MDMA!!!) are/have been used pre-Trobalt.
- We have almost zero idea of what "supplements" effects may be with Trobalt, let alone our common 'Benzos'.
- We have had zero women trying Trobalt.
- Etc., etc., etc.

However... Look at the data! There is almost no way all of the results we are seeing on Tinnitus are placebos. Too many reliable people involved and too many random dose effects to make that feasible IMHO. Overall trend is clearly that Trobalt affects tinnitus itself in a positive manner, even if just temporarily.

Bottom line...TROBALT IS AFFECTING TINNITUS!!!

This is an emphatic "proof of concept" for the Kv Channels being a drug approach to tinnitus amelioration...and our own 'early version' of a rough-and-ready AUT00063 sneak preview.

In a way, that is enough. And a damn worthwhile thing to find out...Congratulations everyone! Truly.

Lastly - Is anyone else in line for trying this stuff in the near future, or is that it for our trialees???

Best to all... Zimichael
 
#3,332
I just want to say i am on 300 per day i still have t he spikes sometimes, when i take trobalt i goes town a bit. i woke with terible t this morning, nut i took 150 and sleeping pill and woke real and it was gone, and i took 250 for morning and it was ok but i was over drugged day, and now i took 300 (17:17) .

Personal male thing is that i cant watch porn's ... it us useless

so i declare tomorrow 250 and so down , every week you get report on increase of life killer
 
#3,334
Christian78 said:
I just want to say i am on 300 per day i still have t he spikes sometimes, when i take trobalt i goes town a bit. i woke with terible t this morning, nut i took 150 and sleeping pill and woke real and it was gone, and i took 250 for morning and it was ok but i was over drugged day, and now i took 300 (17:17) .

Personal male thing is that i cant watch porn's ... it us useless

so i declare tomorrow 250 and so down , every week you get report on increase of life killer
Click to expand...

Christian...Hoping going down will not be worse than you have already been going through!

However, for clarity when you state dose, can you please say if TOTAL per day or per dose...As I am assuming right now "I am on 300 per day" means = 300 x 3 = 900 mg/per day total. Or is it 300 mg total per day.

Thanks and good luck with the roller coaster from hell... Zimichael
 
#3,335
Christian78 said:
Personal male thing is that i cant watch porn's ... it us useless
Click to expand...

Indeed this whole informal trial seems to be very much a "male thing". When I reviewed the statistics of all trialees doing Trobalt - the summary of which can be seen in the ATA petition thread - it occured to me that there is not a single woman on TT doing Trobalt?!?

Hhmmmm... :whistle:
 
#3,336
attheedgeofscience said:
Indeed this whole informal trial seems to be very much a "male thing". When I reviewed the statistics of all trialees doing Trobalt - the summary of which can be seen in the ATA petition thread - it occured to me that there is not a single woman on TT doing Trobalt?!?

Hhmmmm... :whistle:
Click to expand...

It's a bit sad to say so but risk takers are generally men, look at the statistics for car accidents, motorbike accidents, extreme-sports accidents, street drugs and so on ...
And we all know experimentation/pioneering is a gendered thing ;-) ... ok, sorry for the bad joke, I ->>>>>>>
 
#3,338
Zimichael said:
Christian...Hoping going down will not be worse than you have already been going through!

However, for clarity when you state dose, can you please say if TOTAL per day or per dose...As I am assuming right now "I am on 300 per day" means = 300 x 3 = 900 mg/per day total. Or is it 300 mg total per day.

Thanks and good luck with the roller coaster from hell... Zimichael
Click to expand...
600mg is needed to get any lasting effect

i am on 300*3, i will write in total from now on

that is tomorrow 250+250+300 = 800 tomorrow (300 mg to sleep over)

I noticed that as longer i am on 300mg medicine works better but not on t, it kills me, i am unable to thing, harder to write day by day, cant remember a thing. I use bigger and bigger paper to write what to do.
 
#3,339
attheedgeofscience said:
Indeed this whole informal trial seems to be very much a "male thing". When I reviewed the statistics of all trialees doing Trobalt - the summary of which can be seen in the ATA petition thread - it occured to me that there is not a single woman on TT doing Trobalt?!?

Hhmmmm... :whistle:
Click to expand...
How did you got that pioneer button
 
#3,340
Christian78 said:
How did you got that pioneer button
Click to expand...

To be perfectly honest, I do not recall any longer, but it was one that @Markku "awarded" me at some point a while back. I believe it had something to do with:
Zimichael said:
You have indeed pioneered the way to: "boldly go where no man has gone before".
Click to expand...

While I do not recall, specifically, what is certain, however, is that I have shared a fair bit of unique information on novel treatments such as stem cells, new developments in relation to potassium modulators, and disclosing information on topics such as AM-102. Not to mention many more topics...

And if you are into the "ribbons thing", then I can think of a couple more to add to my profile such as "First 1K member"... :)

First 1K Member_2.jpg


While the above is just for fun, there are actually quite important initiatives going on "behind-the-scenes" at TinnitusTalk. I can honestly say that the stuff I am involved in with regards to finding ways of advancing potassium modulator research is potentially quite serious. And so is the potential outcome. Tinnitus is a serious condition.

Perhaps we will have something interesting to share in the "ATA petition thread" at some point.

You never know.
 
#3,341
I wonder, dont thing i am proud (opposite i am much cornered and suicide), but i wonder, am I first guy that after 3 months of positive effect and lets say no tinnitus is not intentionally into tinnitus the life killer?

How does it feel to know your pain, and then going into it again... with a knowledge and trauma of knowing it... i think it is normal to kill yourself in this position...
 
#3,343
marqualler said:
Are you teasing some "interesting" information to come in the near future? Or just teasing us? :)
Click to expand...

Listen... if you are expecting a cure in your mail by tomorrow afternoon, then you have got the wrong person.

But as late as of today - ie. 6-7 hours ago - I have replied to a doctor from a tinnitus research centre. So far they have shown an interest in the material we have gathered (hence the reason for the statistics in the ATA petition thread "the other day"...). If you were part of the volunteer group, I could explain further - I have been generous in disclosing details for those very few who decided to volunteer.

The medical community - and especially the tinnitus community - is plagued by an absence of leadership. This is not about fancy medical degrees in neurology or an ENT doctor having countless diplomas hanging on his wall. This is about basic simple leadership. Already more than a decade ago, there were indications that potassium channel modulators (Flupirtine) may be useful in the treatment of tinnitus. These were the first pharmacological steps. And what has happened since then? Nothing. Or close to nothing, at least.

So at the moment, what a very few of us is trying to do is...

1) Quick-fix the current situation (= Trobalt study).
2) Advance/fund specific pieces of Trobalt-derivatives research.
3) Raise awareness/share information

And trust me... this really is a basic leadership problem. All it takes is for a logically thinking person (with a certain amount of perseverance) to contact the right people, explain them the situation, demonstrate the way forward, and there you go. This is not rocket science. Had the right steps not been conveniently ignored by certain members of the tinnitus community a decade ago, then perhaps there would already be a treatment/cure today. If you do not believe me, then feel free to do your own research on Flupirtine/Lidocaine and their effects on channel modulation...

attheedgeofscience
17/DEC/2014.
 
#3,344
attheedgeofscience said:
Listen... if you are expecting a cure in your mail by tomorrow afternoon, then you have got the wrong person.

But as late as of today - ie. 6-7 hours ago - I have replied to a doctor from a tinnitus research centre. So far they have shown an interest in the material we have gathered (hence the reason for the statistics in the ATA petition thread "the other day"...). If you were part of the volunteer group, I could explain further - I have been generous in disclosing details for those very few who decided to volunteer.

The medical community - and especially the tinnitus community - is plagued by an absence of leadership. This is not about fancy medical degrees in neurology or an ENT doctor having countless diplomas hanging on his wall. This is about basic simple leadership. Already more than a decade ago, there were indications that potassium channel modulators (Flupirtine) may be useful in the treatment of tinnitus. These were the first pharmacological steps. And what has happened since then? Nothing. Or close to nothing, at least.

So at the moment, what a very few of us is trying to do is...

1) Quick-fix the current situation (= Trobalt study).
2) Advance/fund specific pieces of Trobalt-derivatives research.
3) Raise awareness/share information

And trust me... this really is a basic leadership problem. All it takes is for a logically thinking person (with a certain amount of perseverance) to contact the right people, explain them the situation, demonstrate the way forward, and there you go. This is not rocket science. Had the right steps not been conveniently ignored by certain members of the tinnitus community a decade ago, then perhaps there would already be a treatment/cure today. If you do not believe me, then feel free to do your own research on Flupirtine/Lidocaine and their effects on channel modulation...

attheedgeofscience
17/DEC/2014.
Click to expand...
to Jakob and all others who have contributed:
Thank you for your work. You are indeed a gift to our community and are thorough and precise.
 
#3,345
attheedgeofscience said:
Listen... if you are expecting a cure in your mail by tomorrow afternoon, then you have got the wrong person.

But as late as of today - ie. 6-7 hours ago - I have replied to a doctor from a tinnitus research centre. So far they have shown an interest in the material we have gathered (hence the reason for the statistics in the ATA petition thread "the other day"...). If you were part of the volunteer group, I could explain further - I have been generous in disclosing details for those very few who decided to volunteer.

The medical community - and especially the tinnitus community - is plagued by an absence of leadership. This is not about fancy medical degrees in neurology or an ENT doctor having countless diplomas hanging on his wall. This is about basic simple leadership. Already more than a decade ago, there were indications that potassium channel modulators (Flupirtine) may be useful in the treatment of tinnitus. These were the first pharmacological steps. And what has happened since then? Nothing. Or close to nothing, at least.

So at the moment, what a very few of us is trying to do is...

1) Quick-fix the current situation (= Trobalt study).
2) Advance/fund specific pieces of Trobalt-derivatives research.
3) Raise awareness/share information

And trust me... this really is a basic leadership problem. All it takes is for a logically thinking person (with a certain amount of perseverance) to contact the right people, explain them the situation, demonstrate the way forward, and there you go. This is not rocket science. Had the right steps not been conveniently ignored by certain members of the tinnitus community a decade ago, then perhaps there would already be a treatment/cure today. If you do not believe me, then feel free to do your own research on Flupirtine/Lidocaine and their effects on channel modulation...

attheedgeofscience
17/DEC/2014.
Click to expand...

And this right here, ladies and gentlemen, demonstrates the power of this collective community. Thank you for your efforts and contribution ATEOS, and everyone involved.
 
#3,348
This is really interesting that low doses are helping a bit, too. From my experience with my other chronic health situation (inflammation of my eyelids, that started when I was 7 years old), treatment that keeps things "in check" works like a cure. For me it is Restasis eyedrops that have gotten that condition under control, and I would guess based on what I have read that the first step in Tinnitus treatment is something like a low dose potassium blocker in conjunction with other therapies.

For those in the USA--how are you getting Potiga? @Lake Girl did you ask your ENT to prescribe it? I may do so at my next ENT appointment if that is the case.

FYI I am also consulting with Paula Schwartz, a TRT clinician that @Dr. Nagler recommended, in January. Hopefully I will be well on the road to habituation because I'd rather spend that $ on a finished basement but if need be, I hope it will be the right path. But I am more and more intrigued by Potiga.

And thank you @attheedgeofscience for your leadership--it is very much appreciated.
 
#3,349
Lake Girl said:
I have started Potiga. First 5 days at 50mg. Currently taking 100mg. Tapering up 50mg per week. It helps! I have quiet hours after taking the pill. Quiet lasts 2-3 hours. No side effects whatsoever.
Click to expand...
From your user name and profile I think it's safe to assume you are the first female to try Trobalt. Please keep us updated.
 
#3,351
marqualler said:
This is really interesting that low doses are helping a bit, too. From my experience with my other chronic health situation (inflammation of my eyelids, that started when I was 7 years old), treatment that keeps things "in check" works like a cure. For me it is Restasis eyedrops that have gotten that condition under control, and I would guess based on what I have read that the first step in Tinnitus treatment is something like a low dose potassium blocker in conjunction with other therapies.

For those in the USA--how are you getting Potiga? @Lake Girl did you ask your ENT to prescribe it? I may do so at my next ENT appointment if that is the case.

FYI I am also consulting with Paula Schwartz, a TRT clinician that @Dr. Nagler recommended, in January. Hopefully I will be well on the road to habituation because I'd rather spend that $ on a finished basement but if need be, I hope it will be the right path. But I am more and more intrigued by Potiga.

And thank you @attheedgeofscience for your leadership--it is very much appreciated.
Click to expand...
I went to a neurologist today to look at my MRI of my brain. He said it was a little small for my age. Well, duh...I guess all the fun I had in my youth have costs some brain cells.

He specializes in epilepsy and sleep.
I told him about TT and Retigibine. He prescribes it for his epilepsy patients.
No blue conditions but he said you should get eyes checked every 3 months for blue pigment. It could be precursor to vision problems.

He read some of the posts here and handed me a script for it! I'm not sure I'm ready to take it, but today is a quiet day for me in my cycle. Tomorrow I may be running to the pharmacy.

Are the users here continuing with it?
Is there no end to taking it for results?
My bladder is already comprimised from prostate that was fixed but damage done.
Retention is not a good thing for me.

Is the max quieting 2-3 hours before needing another dose?
 
#3,352
I have a question regarding Retigabine dosing.

Let's assume that a tinnitus sufferer was able to successfully convince his or her physician to prescribe Retigabine off-label. The Retigabine dosing for seizure disorder has been well-described, but obviously there is no "approved" dosing for tinnitus. Is there a consensus among those on this board who are familiar with Retigabine - either because they have tried it themselves or because they have been following the various Retigabine threads - with regard to what specific dose(s) and schedule that person should request?

Thank you.

Dr. Stephen Nagler
 
#3,353
Larry OT said:
Is the max quieting 2-3 hours before needing another dose?
Click to expand...
I think this varies from person to person but for me that's what it was at my highest dosage. Just be careful Larry. I know with me I didn't want to stop even with some funky side effects (bad funky, not good). I'm now off of it completely. Today is my first day completely off or RTG since early September and I feel good with out it.

Just hear me out : I think for some of us RTG might have an overall negative mental effect because it doesn't promote us to stop monitoring. For me it was like being on a diet and constantly weighing myself to see if I'd dropped pounds.

Relief is relief but I'm just saying from what happened to me...

I think it might be helpful for those on RTG to have scheduled times you check on your T... and other wise let it be (or not be for that matter).
 
#3,355
attheedgeofscience said:
If you do not believe me, then feel free to do your own research on Flupirtine/Lidocaine and their effects on channel modulation...
Click to expand...
Regarding the Flupirtine question I did found an article dating from 2006 stating that it is not effective at a dosage of 2*100mg daily against T
http://www.ncbi.nlm.nih.gov/pubmed/17114151
May I know where have you seen reports saying that it is useful against T?

Dr. Nagler said:
The Retigabine dosing for seizure disorder has been well-described, but obviously there is no "approved" dosing for tinnitus.
Click to expand...
I don't know but people are generally following the seizure dosage
But some people are being creative by tampering with taper rate/dosing scheme and some have apparently gone above the FDA established maximum safe dose of 1200mg/day just to see what will happen

Zimichael said:
Bottom line...TROBALT IS AFFECTING TINNITUS!!!
Click to expand...
We need concrete evidence that it is really affecting T loudness objectively not only soften the perception of T like benzos do. One way to do so is by checking the minimum dB of white noise for complete masking.

Telis said:
I think if you have to monitor your T, it can't be that intrusive. Why even bother with this drug.
Click to expand...
I'd rather perish with a bold experiment in search of a possible brave new world and sacrifice for the sake of advancement of scientific knowledge instead of live to a ripe old age with T feeling good and pretending to be a normal person. Yes it's true that the mechanism of T is not well understood but historically almost ALL discoveries in the field of medicine were accidental, no one understood how Penicillin kill bacteria when it was first discovered, no one knows the molecular mechanism of Quinine when it was first used against malaria in 17th century, back then people didn't have an idea what is a molecule/atom. Hell, for many Antidepressants their mechanisms of action on brain chemistry are still not fully understood and we still don't understand why it works on some people but not on others. When Colombus set sail for the west no one knows whether he'd return safe and intact but throughout history it is this entrepreneurial spirit that drive advancement. Knowledge is gained through a long series of trial and error, and in the process sacrifice even loss of life is almost always inevitable. But staying inside one's safe zone, trying to convince yourself it's not going to hurt and do nothing about it, will never bring new insights. Same for Space exploration, the sacrifice of Apollo 7, Soyuz 1, Challenger, Colombia were not futile. The future ONLY belongs to pioneers who are not afraid of death.

In summary I quote my favorite quote
It's better to live one day like a lion, than 100 years like a sheep

Honestly I do not fear death. I will definitely join this experiment if I can get hold of this medicine.
 
#3,356
#3,358
#3,359
Dr. Nagler said:
I have a question regarding Retigabine dosing.

Let's assume that a tinnitus sufferer was able to successfully convince his or her physician to prescribe Retigabine off-label. The Retigabine dosing for seizure disorder has been well-described, but obviously there is no "approved" dosing for tinnitus. Is there a consensus among those on this board who are familiar with Retigabine - either because they have tried it themselves or because they have been following the various Retigabine threads - with regard to what specific dose(s) and schedule that person should request?

Thank you.

Dr. Stephen Nagler
Click to expand...
Few people had results with low doses like 300mg/day but most of us had the very noticeable improvement at 900mg/day (me included)
900 is what we consider the best dose and bearable side effects for most of us (me included), except christian.
 
#3,360
Juan Carlos said:
Few people had results with low doses like 300mg/day but most of us had the very noticeable improvement at 900mg/day (me included)
900 is what we consider the best dose and bearable side effects for most of us (me included), except christian.
Click to expand...
Thank you. Do you take it in divided doses (like 3x/ day), or do you take it all at once?

Dr. Stephen Nagler
 

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