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Retigabine (Trobalt, Potiga) — General Discussion

I'm not super enthusiastic about taking retigabine given that only ~10k people have tried it; I'd be proportionally more concerned about being in the first 100 for '63. In general scientific rigor has improved since stuff like fen/phen and thalidomide hit the market, but the risk is still very real. Look at the sheer number of drugs that got black box warnings after they'd already been on the market for a decent period of time.

Yeah, but on the other hand, some people try street drugs without knowing what's in them, and couldn't care less.
Still others, like Alexander Shulgin, experimented with completely new, synthesized drugs, never feared, and lived a long life. I guess it all depends on your mindset and risk taking profile.
 
Yeah, but on the other hand, some people try street drugs without knowing what's in them, and couldn't care less.
Still others, like Alexander Shulgin, experimented with completely new, synthesized drugs, never feared, and lived a long life. I guess it all depends on your mindset and risk taking profile.

Absolutely. I've taken my share of street drugs and novel Shulgin compounds, and at this point in my life I'm ready to be more conservative.

Shulgin had tinnitus. He said it tended to disappear any time he took a 5-HT agonist...
 
@rtwombly ...In a way if you are including people in your list who have prescriptions and are looking into it you could chuck me into the pond.
I have had a prescription, and a very willing MD (and assistant) for nearly a month now. I'm not in the water yet though, as went away camping for 10 days, then since, have been getting a much deeper education on the mechanisms of this drug (and it's brothers and sisters) c/o our eminent Benryu...and others here.
I feel VASTLY more informed regarding Retigabine now than I did a month ago, and the also the mechanisms of T in general. Seeing as I like to make informed decisions when it comes to meds, (as have had some very bad experiences with some of them), my "hold" is for a couple of main reasons...though I often feel on the cusp of just saying "to hell with it", filling the scrip, and getting going with it.

In case relevant to anyone else "on the cusp", those reasons are:

1. Giving Autifony a chance to post their requirements for Phase II trials to see if I have a ghost of a chance of getting in. For sure if I have been on Retigabine I have severe doubts about their welcome.

2. I have been using Clonazepam for quite some time. Not a very high dose, and totally ineffective for sleep (what I got it for), as have adapted to it completely. However, dumping it takes some doing as endogenous anxiety kicks in fairly quick and life becomes a bit "tense" shall we say. What I call "The white sweat"! Not fun.
So what? Well, no one quite knows how a GABA modulator and K channel drug are going to mix re neuro plasticity, etc.. They may make a cool Martini or they may make a Bloody Mary, with some real blood instead of tomato juice...so to speak. Hell we don't exactly have a great handle on plain Retigabine alone, by itself, that's why we are all aware that this is a "guinea pig trail" going on here...However I have already started to taper the Clonazepam in preparation.

3. A sub-thought...Yeah I am concerned about side effects but not particularly, because I intend to start at lower doses and a slower taper than anyone has done or is doing so far. Reason being, I tend to react very quickly to meds and often at much lower doses than supposed to (and sometimes not at all - so it is not consistent). I'm in no rush once I start...as I am truly a hard core, long term, cemented in, T example. I mean if it works on me, it should kick the shit out of short term T 'plasticity' folks.

4. Cost...Initially a real obstacle as prices were ridiculous. Now quite manageable c/o Canada and the fact that I do not intend to take this stuff for more than a "trial" at this stage. Months, not years. I don't like the long term side effect profile.

That's about it. I'm sitting on this prescription, even had some Potiga coming at the local CVS three weeks ago, and feel like I'm almost in possession of some sacred scroll from Zork. Ha ha...It's weird. Especially as my T and H have such a huge impact on my life...and this could fix it!!!
I can assure you, if Autifony dilly dallies and does not post something soon, and I have gone through the worst of the "chop" from the Benzo...I will be diving in the Potiga water. I've been waiting 58 years, and this seems to be the most viable current option I have ever come across.

Best, Zimichael
 
On September 9th I have an appointment with a new doctor with whom I mean to discuss my options. Preparatory to that, I'd like to summarize the experiences of those who have been able to at least get a prescription for retigabine. Please correct me if I omit anybody.

Mpt -- Our original poster has been on retigabine since June 27, 2014. His tinnitus started in January of 2014. Within two weeks, he improved to the point that he could no longer hear his noises except in a quiet room with his fingers in his ears. His dosage is 300mg x 3/day.

Christian78 -- Tinnitus since September 2013. Started retigabine July 22. Tinnitus 30-40% improved and no spikes at 200mg x 3/day. Efficacy seemed to decrease after seven days. Decided original dosing increase had been too rapid, restarted on or around August 4 at lower dosage. After 200mg x 3/day for 13 days, reported "no tinnitus" on August 24th; has had good days and bad days since then.

Viking -- Tinnitus since 2006, got worse 2013. Started retigabine July 25, big improvement by July 31. Stopped usage on August 5 due to kidney stones (pre-existing, but diagnosed early August). Plans to start again now that this condition has resolved.

jamesdk -- Onset unknown. Started before July 27. Tinnitus 70-80% improved. 100mg x 3/day. Member has not posted again on the thread, so this may not be legitimate.

Lep -- Tinnitus since June 2013. Started retigabine before August 5. Vision disturbances after three days, stopped usage after one week. Had not experienced improvement and was concerned about side effects. Side effects went away after a day without retigabine.

linearb -- Tinnitus since 1998. Obtained retigabine prescription, waiting to see if insurance will cover.

johno -- Tinnitus since June 7, 2012. Obtained retigabine as of August 24, has started/will start shortly.

SoulStation -- Tinnitus since 2012. Obtained retigabine prescription today (August 28). Looking into costs.

Bogdan -- Tinnitus since 2012. Started retigabine around August 14. 50% improvement at 100mg x 3/day. Will increase dosage in the coming week.

So, taking all these people at their word, we have six people who have taken retigabine for their tinnitus. Of those six, five experienced at least some improvement, one (Mpt) is as nearly cured as makes no difference, and three others had positive enough experiences that they are continuing on. Viking and Bogdan report early improvements after more than 1 year of tinnitus.

On the negative side, Christian78, Viking, and Lep all experienced significant side effects, though Viking did not rate his as anything to worry about. Christian78 reports side effects diminishing with time.

We're still early days, but a huge THANK YOU to all those who have taken on the risks and financial burden of this treatment.
Great post. Thanks for taking the time to summarise. Looks like more coming on board and soon a hall of fame.
 
To the people that are on Trobalt/Regabatine, what does your tinnitus sound like?

Does anyone have an idea as to whether this drug would work on "head noise"

My T does not necessarily feel like it is in my ear, but more or less on the "outskirts" of my brain! It is not a ringing sound, but an "electrical hissing" type sound. (I probably sound like a weirdo now) :p

ie: My T does not sound like the immediate "solid tone" that you would get immediately after a loud bang, that gradually diminishes over a shortish time frame.

Peace and quiet to all.

Sticky
 
Well now i would say there moments where t stops to 10%, most of day if there is any noise around you dont pay attention. I sleep better, i diminish sleeping pills (trazadone 100 to 50, zolpiderm 10 to 5, and trow out antihistamine drops), went one more step down with Valium to 5 mg, (i used after onset of t different meds that when converted to Valium are ca 80 mg!!! now 5 mg, and going to end them).

Today first time after February i went to gym today. Been walking outside, felt alive after longer time, last 10 days I am alive. Spikes, YES but 4h instead days, T, yes, from 30-70%, I am not on full dosage like Mpt.

Side effects:

Amnesia, definitely pay attention where you put things because it is hard to find them. When you speak some words come harder, spelling like where comes double letter is hard. I speak several languages so I have a problem to find right word, I know it in other language (1 of 5) but cant find it on one i use that moment. Sometimes over silent speech.

When I take pill side effect hits in 50-65 min. Depends on did you eat or not, sometimes there are no side effect as like you took placebo pill. It happen to me once that i could not swallow, like just musculus reject command, but it i take bit water it works, on empty it did not work, but 20 min later it was ok, but it scared me. Mayor shook is 10 min, next 10 minutes it goes away, those are my side effects now, but amnesia stays, and 3h last min speech problems. Blurry vision went away, can last on 10 min. No urine retention, i was cheeking it, no dark urine or blood in urine, tested in hospital. Amnesia to me is biggest problem, because i need brain, but no use of brain when you have T.
 
hi christian do you intend to get up to the full dosage ( 900mg ) and will you try to taper off to see what happens at sometime. Last time you stopped taking this i seem to recall you saying it was terrible when it came back , was that just the normal level or did you think it was worse ?
 
@Christian78 ...Hey Christian, sorry to add to your 'questions load' and apologies if you posted your "list of meds taking" further back in the thread. I did a thread search on you and could not locate such a list, but there are so many posts it's easy to miss. However, I did find a reference to Klonopin/Clonazepam...but think that was only in reference to Viking. However, it is clear you have been taking Valium and tapering off it.
As it's a Benzo, and that is one my areas of ?????????? - due to inference that Benzos increase plasticity (which could be a good thing or a bad thing), could you give a bit more detail on dosages of your Valium taper in relation to your successive/at same time, use of Trobalt? Like how much Valium were you taking at first, then as you progressed with Trobalt, and then now. Obviously, what I'm wondering is if there is any connection to the side effects profile you have had and the Benzo.

If you want to give a complete list of what you are taking and doses, that would of course be great.

Thanks much... Zimichael
 
@Christian78 ...Hey Christian, sorry to add to your 'questions load' and apologies if you posted your "list of meds taking" further back in the thread. I did a thread search on you and could not locate such a list, but there are so many posts it's easy to miss. However, I did find a reference to Klonopin/Clonazepam...but think that was only in reference to Viking. However, it is clear you have been taking Valium and tapering off it.
As it's a Benzo, and that is one my areas of ?????????? - due to inference that Benzos increase plasticity (which could be a good thing or a bad thing), could you give a bit more detail on dosages of your Valium taper in relation to your successive/at same time, use of Trobalt? Like how much Valium were you taking at first, then as you progressed with Trobalt, and then now. Obviously, what I'm wondering is if there is any connection to the side effects profile you have had and the Benzo.

If you want to give a complete list of what you are taking and doses, that would of course be great.

Thanks much... Zimichael


I used Valium before, as said NOW i am on 6 mg Valium, and nothing changed during my treatment in Trobalt, therefore i don't believe it has any reason to mix those meds.

I use 6 mg Valium (Diazepame)
50 mg trazadone for sleep (normal dosage 300 mg to 600 mg for depression)
5 mg zolpiderm (not 15 mg)
200 x 3 mg trobalt (not 3 x 300 mg)

b-komplex
magnezium
zink
omega 3

goal is that i end the Valium, because it destroy brain in-reversibility, make it look like Swiss cheese.

@111 I do not intend to tapper, i will see how it goes, i will speak with doctor should i try 300 mg, i was 3 days on 300 mg and i did not notice some difference, the most difference i notices is acheaved by steady dosage and time, not by high dosages, i did had very little effect in start, 2 weeks after i got better and better (2 week on 200 mg)
When i got better i cut down with Trazadone, , Sleeping pill, and main goal it to slowly push out Valium, even now it is small dosage 6 mg but those 6 stay so long in system that in 8 days there is 50 mg concentration in blood, so now taking 6 i have relative concentration of 40-50 mg Valium in blood. Now soon i will start cuttin by 0.5mg Valium like 4,5mg. oki?

http://www.benzo.org.uk/manual/bzsched.htm
 
From Understanding the Transmission of Nerve Impulses For Dummies

Excitation or inhibition of the membrane occurs.


Whether excitation or inhibition occurs depends on what chemical served as the neurotransmitter and the result that it had. For example, if the neurotransmitter causes the Na+ channels to open, the neuron membrane becomes depolarized, and the impulse is carried through that neuron. If the K+ channels open, the neuron membrane becomes hyperpolarized, and inhibition occurs. The impulse is stopped dead if an action potential cannot be generated.

Resting potential gives the neuron a break.
When the neuron is inactive and polarized, it's said to be at its resting potential. It remains this way until a stimulus comes along.

--------------------------

Question: Assuming tinnitus is the result of K+ Potassium gates stuck closed. Would it mean that after a certain time (years) they will lose the ability to function properly - i.e. overload/damaged beyond functionality/etc.
@benryu
 
Does anyone have an idea as to whether this drug would work on "head noise"

My T does not necessarily feel like it is in my ear, but more or less on the "outskirts" of my brain! It is not a ringing sound, but an "electrical hissing" type sound. (I probably sound like a weirdo now) :p

ie: My T does not sound like the immediate "solid tone" that you would get immediately after a loud bang, that gradually diminishes over a shortish time frame.

Sticky

I got the exact same sound. Had it for 14 years. Noise induced, with upper frequency hearing loss. After what seems to be a permanent increase since April this year it's gone from being a steady hiss to more of a moving around in my head electrical hissing/buzzing. Super-fucking-annoying. (excuse the language :) )
 
@Zimichael thanks for the update. I feel as you do that it makes sense to wait for Autifony a little longer. Not much, though. Really hoping I can establish a rapport with my new doctor so retigabine will be back on the table. If you do decide to start taking the pills, we'll all be interested in putting the acute vs. chronic question to the test in your case.

@all, feel free to PM me with updates if you have a prescription or are starting a course of retigabine. I'll keep up as best I can and re-post the summary when there are significant changes.

@Christian78 I hope the side effects will continue to be manageable for you. Thank you for updating about your other meds. I think it is significant that you have some other factors affecting you, and perhaps affecting your reaction to Trobalt. As you improve, hopefully there will be a correlation we can draw.
 
So I finally got a hold of this med. Filled a RX for 90 50 MG tablets (I had to pay 427.00 for them!)
I talked to the Doc's office and explained the that when I'm done with my 15 days of the 50 MG[6x/day] I'd like to have the RX recalled into an online pharmacy as most of the online pharmacy prices seem to be EXTREMELY LOWER.
But I've been getting incredibly cheap health insurance for that last 6 mo so I saved a great deal of cash and this is well spent I think ( or hope )
I started today at 5:30 P.M. EST with 100 mg down the hatch. I will keep everyone updated as much as I can.
Other meds/supplements I take also:

20 mg Lexapro/Day
20-30 mg Adderal Tabs (Quick release not timed)
Weening off of Ativan 1.25 mg
Flexeril 10-15 mg/Day (probably going to stop this one in a day or two)

I also take
Magnesium Citrate (500-1000 mg a day), NAC (1200 mg) w/small amounts of Selenium/Molybdenum.
Zinc, B Complex, Vitamin A, E and C ...

Wish me good luck. I'm keeping my eyes open for any side effects.
 
@rtwombly ...In a way if you are including people in your list who have prescriptions and are looking into it you could chuck me into the pond.
I have had a prescription, and a very willing MD (and assistant) for nearly a month now. I'm not in the water yet though, as went away camping for 10 days, then since, have been getting a much deeper education on the mechanisms of this drug (and it's brothers and sisters) c/o our eminent Benryu...and others here.
I feel VASTLY more informed regarding Retigabine now than I did a month ago, and the also the mechanisms of T in general. Seeing as I like to make informed decisions when it comes to meds, (as have had some very bad experiences with some of them), my "hold" is for a couple of main reasons...though I often feel on the cusp of just saying "to hell with it", filling the scrip, and getting going with it.

In case relevant to anyone else "on the cusp", those reasons are:

1. Giving Autifony a chance to post their requirements for Phase II trials to see if I have a ghost of a chance of getting in. For sure if I have been on Retigabine I have severe doubts about their welcome.

2. I have been using Clonazepam for quite some time. Not a very high dose, and totally ineffective for sleep (what I got it for), as have adapted to it completely. However, dumping it takes some doing as endogenous anxiety kicks in fairly quick and life becomes a bit "tense" shall we say. What I call "The white sweat"! Not fun.
So what? Well, no one quite knows how a GABA modulator and K channel drug are going to mix re neuro plasticity, etc.. They may make a cool Martini or they may make a Bloody Mary, with some real blood instead of tomato juice...so to speak. Hell we don't exactly have a great handle on plain Retigabine alone, by itself, that's why we are all aware that this is a "guinea pig trail" going on here...However I have already started to taper the Clonazepam in preparation.

3. A sub-thought...Yeah I am concerned about side effects but not particularly, because I intend to start at lower doses and a slower taper than anyone has done or is doing so far. Reason being, I tend to react very quickly to meds and often at much lower doses than supposed to (and sometimes not at all - so it is not consistent). I'm in no rush once I start...as I am truly a hard core, long term, cemented in, T example. I mean if it works on me, it should kick the shit out of short term T 'plasticity' folks.

4. Cost...Initially a real obstacle as prices were ridiculous. Now quite manageable c/o Canada and the fact that I do not intend to take this stuff for more than a "trial" at this stage. Months, not years. I don't like the long term side effect profile.

That's about it. I'm sitting on this prescription, even had some Potiga coming at the local CVS three weeks ago, and feel like I'm almost in possession of some sacred scroll from Zork. Ha ha...It's weird. Especially as my T and H have such a huge impact on my life...and this could fix it!!!
I can assure you, if Autifony dilly dallies and does not post something soon, and I have gone through the worst of the "chop" from the Benzo...I will be diving in the Potiga water. I've been waiting 58 years, and this seems to be the most viable current option I have ever come across.

Best, Zimichael
If you take it and it works to some degree you'll have everyone running to get an Rx
 
If you take it and it works to some degree you'll have everyone running to get an Rx
I hope so. Especially because of this quote : "Such a medication could be a very helpful preventive strategy for soldiers and other people who work in situations where exposure to very loud noise is likely," And I am a musician who plays in a band at least once a week for 70% of the year with noise levels up there.
Dr. Tzounopoulos (I think he was from the Pittsburg study).
http://scienceblog.com/63396/causes...drug-that-can-prevent-it/#eeTdwrG7GesCY505.99
 
@Christian78 ...Great thanks for the update on meds list and your take on the Valium being not much of an issue.

@rtwombly ...thanks for "organizing" us!

@SoulStation ... Sigh! My pet peeve coming out here. Hey great that you finally go the scrip and yeah, without a pharmacy deal it takes gold bars to pay for this stuff. Anyway, I did a search on your Profile and Introduce Yourself...and once again I came up with zero! *[Please people the NSA is NOT going to be interested in when you got your T and how you got it, so can you please...pretty please...just for me...post that much on your Profiles???!!!]
Ummmm..... Soulstation, that was not particularly directed at you but it's a constant 'thing' of mine that I like to get at least the T basics on someone I am interested in helping, or following, or basing some of my own deliberations on, etc. o_O
However, was trying to find out if you were a long term or short term T person??? And how you got it - sound/ototoxicity/barotrauma/whatever. Could you fill in the blanks there for me please?! Ta much...(And yeah I realize it may be buried in this, or another thread, but it's getting impossible for me to find stuff easily).

So SoulStation, you too are on/weaning off a Benzo....Mmmmmmmmmmmmmm, and Christian also...so maybe my #2. issue of getting off most of the Clonazepam first, before starting the Potiga is less of an issue than it might be!

My thoughts had been, re the GABA (in my simplistic terminology): Benzo's increase brain plasticity and this could be a good thing, or a not so good thing…In brief, may make the neuro-plasticity reception to the changes in K+ channels "stick" easier or quicker, or "not stick" (like: 'Hey man, why bother to remember this new stuff, we are so chilled on the GABA – let it slide and keep things the way they are dude'). Likewise relationship with any of the 'non target side effects' would be subject to the same principles and could be a bad "sticky wicket" if the wrong thing got adapted to too darn quickly!

However, looking at the list of meds and supplements SS and Christian are on (let alone Viking before)...hell I am a pretty clean whistle with just the Klonopin! So that one is now less of an issue for me. [You see this sharing stuff really helps a decision making process!].

Thus that leaves just #1. Autifony...If they do not post a trials update in the next week say, I am going to just blow that off and go ahead with the Potiga. Before I do though, I will have a conversation with the moderators to see if maybe we should split this thread into "trailees" versus "theory," or something...so that at least I can cope with it all! At this point it may be I am the only real long term, hard core porn, die-hard, fossilized, potentially semi plastic spastic, nearly guinea pig, with a prescription, we have...Is that correct???
Come on...step up some other "longie"...let's do this together and at least if we go out with a bang it will be of some use to others.
Takers???!!! :whistle:

Best...Zimichael
 
Yeah, id love to see a thread of just the experiences of the people taking this med.

Im seeing my primary doc in a week, and im going to discuss this with him. He has tinnitus as well and is generally open to trying anything. If we can get it in the netherlands.
 
We should compile a PDF to bring to our doctors on why we want to try this medication.

I literally just printed out the rat study from Pubmed and that was sufficient in my case, obviously your mileage may vary. The doctor joked to his assistants that this was "the new face of medicine" where people "do their own research on the internet and print it out", but he wasn't put off by that. Obviously some people might be.
 
For the Benryu followers and nueron-ologically inclined, I found this a helpful video of the GABA/Benzo action and what happens on the synaptic level. Mainly the first section is relevant, but also note that Glutamate and K+ comes in at the end (and one of the potential side effects of Retigabine = muscle relaxant = that "urinary retention"???)
I was following this up in relation to my Benzo v. K channels v. plasticity and figured some of you may like it. Videos are nice, as makes it easier to follow and can pause the thing and go "Huh???"

Here you go:

Best, Zimichael
 
For the Benryu followers and nueron-ologically inclined, I found this a helpful video of the GABA/Benzo action and what happens on the synaptic level. Mainly the first section is relevant, but also note that Glutamate and K+ comes in at the end (and one of the potential side effects of Retigabine = muscle relaxant = that "urinary retention"???)
I was following this up in relation to my Benzo v. K channels v. plasticity and figured some of you may like it. Videos are nice, as makes it easier to follow and can pause the thing and go "Huh???"

Here you go:

Best, Zimichael

I have had T for a "Long Term" for sure. It just got relatively bad in Jan/Feb this year but had been constant before that just not super intrusive. Mine is mostly noise induced , I'm a musician, and from the NYC/CT area. Hope that fills in some blanks.
 
I got the exact same sound. Had it for 14 years. Noise induced, with upper frequency hearing loss. After what seems to be a permanent increase since April this year it's gone from being a steady hiss to more of a moving around in my head electrical hissing/buzzing. Super-fucking-annoying. (excuse the language :) )
I guess we have the same sound. High-pitched buzzing/hissing oscillating in the head.
Sound like rail tracks when the train has passed.
As you said, super-f... annoying.
 
I am 5th day on entry level dose 50mg 3x per day. White noise type hissing little bit softer than before. Tones in both ears without changes. BUT - central - head T wich i have too is maybe 50% quieter than before. I think it is not placebo effect. I was jogging yesterday and always after it, central T is loud. But yesterday (first run with retigabine in veins) wasnt. I am curious, what happens after increase from 50 to 100mg.

Adverse effect - bladder - i feel mild pressure in it. Feeilings are similar to cold bladder. Urinea color ok.

Hm... i will try some tea or what for bladder. Why is this part of body afected?
 
I am 5th day on entry level dose 50mg 3x per day. White noise type hissing little bit softer than before. Tones in both ears without changes. BUT - central - head T wich i have too is maybe 50% quieter than before. I think it is not placebo effect. I was jogging yesterday and always after it, central T is loud. But yesterday (first run with retigabine in veins) wasnt. I am curious, what happens after increase from 50 to 100mg.

Adverse effect - bladder - i feel mild pressure in it. Feeilings are similar to cold bladder. Urinea color ok.

Hm... i will try some tea or what for bladder. Why is this part of body afected?

This sounds really promising for you and on such a low dose as well!
Look forward to your continued updates.

Regards Rich
 
I wonder why there have been no follow up Retigabine studies on a chronic tinnitus rat model? If one study found to abolish tinnitus in acute cases...why not follow that up? Or have there been successful follow ups with retigabine (and not published)?? Maybe this is where aut00063 spawned from?

No idea what I'm talking about...more just thinking out loud.
 
I wonder why there have been no follow up Retigabine studies on a chronic tinnitus rat model? If one study found to abolish tinnitus in acute cases...why not follow that up? Or have there been successful follow ups with retigabine (and not published)?? Maybe this is where aut00063 spawned from?

No idea what I'm talking about...more just thinking out loud.

Actually that is a very valid question @Telis. I think your assumption about AUT spawning out of it may be the reason why. If they have found more targeted drugs for tinnitus, there is really no reason to test further a drug meant for epilepsy with some bad side effects. If you recall a bit earlier, somebody posted about Auris Medical (creator of AM101) beginning its own chronic tinnitus drug pre-clinical rat trials - codenamed AM102.
 

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