Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
MemberWell, now we need someone with tinnitus >1 year. Any volunteers?Even better would be >2 years. That might make an interesting research piece!
Have you considered it Jazz? I gotta be honest, I'm to much of a scaredy cat to try even if I got the chance. Altough me, @Zimichael and @attheedgeofscience would be interesting guniea pigs since we all have T since childhood.
This is great news @Christian78, hope it continues for you. How are your side effects? You had mentioned that your side effects were not as bad as when you first took Trobalt on your first time. Have you seen improvement in the side effects, or have they completely gone away? What is your current dosage schedule?
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
I'll put my name into the hat as someone willing to guinea pig this stuff as soon as I can find someone willing to prescribe it. The psychiatrist I've seen doesn't think it's a crazy idea but has no experience with seizure drugs.
Going to see some neurologists soon.
edit: is there any risk, that, if AUT00063 works as promised and hits the market in a couple years, prior experience with retigabine would make AUT00063 less likely to work?
Going to see some neurologists soon.
edit: is there any risk, that, if AUT00063 works as promised and hits the market in a couple years, prior experience with retigabine would make AUT00063 less likely to work?
The risk is miniscule (ie different gating targets), but nobody here can say for sure. We can't even say if Autifony will be the cure for sure at this point.
But I'd say it is very very very unlikely, especially if you only do a short course of Retigabine.
But I'd say it is very very very unlikely, especially if you only do a short course of Retigabine.
This is something I am also interested in. Perhaps Beryu can answer us, he seems to know much about how these things work.
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
retigabine doesn't appear to be any more alarming than a bunch of other things I've tried. The only thing out of the lot which worked was benzos -- and for the moment I'm electing not to go further down that path because I worry that deciding at the age of 30 to just take benzos forever, might give me problems worse than tinnitus by the time I'm 50.
Anyway, the "short course" would be my starting point, assuming I can get someone to give me the stuff. I would probably do the slow ramp up to 900mg, keep careful track of the results if any, and not stay at that dose for longer than about a month before tapering off.
That section ("KATP channels in glutamate mediated synaptic degeneration", page 11, http://tinyurl.com/mrgwnxz) simply mentions that activating Katp channels (and thus hyperpolarizing the membrane) helps reduce (dampen) the excitotoxicity caused by glutamate. It does not suggest that the glutamate excitotoxicity itself somehow causes Kv channels (not quite the same thing as Katp btw) to be blocked.
Yet the Pilati, et. al. paper that I mentioned previously does say that after loud noise overexposure the fusiform cells in the DCN show burstiness due - and they suggest it is due to down regulation of Kv channels in those cells. How does this down regulation happen as a result of loud noise exposure? They don't say conclusively, but hypothesize that "homeostatic plastic adjustments to restore the stability of the DCN network" are at work.
Third link is also talking about the phenomenom in a more subtle manner. The thing is also you should not look for glutamate as a keyword but more VGLUT, but this is a very (very) complex mechanism you want to dig into. I don't want to introduce the notion of solute carrier, gene expression, transporter balance, etc... It would get insanely messy for everyone.
Thanks for the links! I feel that reading these papers definitely increased my knowledge of the subject. Here's how I would summarize my understanding of them :
1st link : VGLUTs (subtype 1,2, and 3) are proteins that package glutamate into synaptic vesicles, for release at firing time. After noise exposure damage, a VGLUT1 levels decreased in regions of the DCN which receive auditory nerve inputs. However, VGLUT2 levels increased in regions receiving non auditory inputs, particularly from the vestibular apparatus. They say this could be a compensatory mechanism (the way I understand it - no input from auditory nerve...so compensate with input from somewhere else). However "whilst acting as a possible compensatory mechanism, the increase in VGLUT-2 expression could also lead to an increased release in glutamate due to larger vesicles ..." and "An increase of presynaptic release of glutamate could contribute to post synaptic neuronal damage and/or to the hyperactivity in the DCN correlating with tinnitus". That's my takeaway there.
2nd link : Key sentence seems to be "Our results support the idea that, beyond glutamate loading, VGLUT1 enhances the tonicity of excitatory SVs and stabilises SVs at presynaptic terminals." So a reduction in VGLUT1, as described above, also affects tonicity (continuous 'firing' without stimulation) of the cell.
So in summary, as I understand it, both Kv channels not functioning correctly, and reduced VGLUT1 levels, affect the firing characteristic (timing,etc.) of the cells. And increased VGLUT2 levels may contribute to excess glutamate furthering excitotoxicity.
3rd link : Interesting summary of many different concepts - (particularly interesting to me was learning that audio input is coded in terms of different rates of cell firing, and how calcium buffers regulate that rate).
Sounds like a good idea - I tend to think that a large part of dealing with a problem (practically or even psychologically) is first understanding it. The more you understand something, the less scary and mysterious it becomes. Couple of issues though : 1. Compiling a wiki like that would require some significant effort 2. Since we are not professionals, we are bound to get many (probably significant) details wrong. That could be misleading to people reading it and basing their understanding on it.
Ive been lookin for the post where you said how long youv had T.. Sorry but may i ask again?!
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
SoulStation
Member
I'm going to try to see a neurologist this week or asap. I'm so desperate. Having a hard day. Hope all is well with others!Well, now we need someone with tinnitus >1 year. Any volunteers?
Thoughts go out to all.
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
Can people in countries other than USA , please inquire at their local pharmacy for Trobalt and the price ? (for example 300mg box of ~90 pills)
And post on this thread please. Thank you to all.
And post on this thread please. Thank you to all.
FounderIn Finland, the price of Trobalt without the social insurance institution of Finland discount (which all Finns with Finnish social security number are entitled to) is:
100 mg x 84 pills 71.32€ (approx. $94)
200 mg x 84 pills 123.52€ (approx. $163)
300 mg x 84 pills 163.15€ (approx. $215)
The price with the aforementioned discount is:
100 mg x 84 pills 47.91€ (approx. $63)
200 mg x 84 pills 81.84€ (approx. $108)
300 mg x 84 pills 107.60€ (approx. $143)
100 mg x 84 pills 71.32€ (approx. $94)
200 mg x 84 pills 123.52€ (approx. $163)
300 mg x 84 pills 163.15€ (approx. $215)
The price with the aforementioned discount is:
100 mg x 84 pills 47.91€ (approx. $63)
200 mg x 84 pills 81.84€ (approx. $108)
300 mg x 84 pills 107.60€ (approx. $143)
Johno
Member
- Jan 8, 2014
- 231
- Tinnitus Since
- 6/07/2012
- Cause of Tinnitus
- acoustic trauma
In Slovakia (Trobalt):
100 mg x 84 pills 37€ (approx. $49)
200 mg x 84 pills 70€ (approx. $93)
300 mg x 84 pills 103€ (approx. $136)
100 mg x 84 pills 37€ (approx. $49)
200 mg x 84 pills 70€ (approx. $93)
300 mg x 84 pills 103€ (approx. $136)
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
This mentions a lot of stuff, from muscle injuries to cancer... dunno about how serious we can take it. It is a potassium modulator not a sensu bean.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Side effect are milder, getting use to them, and getting to know how to behave for those 2 h when they appear sometimes, mostly no side effects after a pill, but sometimes it comes. Well in beginning so strange blurry vision that is gone, then you walk like a drunk that is milder 70%, i am 13 days on dosage of 200 mg and how can all be gone? I say it is much easier as side effect are milder.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Mpt, i don't know how this is smart, because you are destroying your nerve cells further. Retigabine that we are both taking is nos kitty, it is a nasty drug, it devastates kidneys over years, imagine you get some problem with kidney and you have to stop, and you get 3 times worse tinnitus. You are doing things that you should avoid and you know you should. Mark my words, when you have to stop medicine because some reason on lets say 6 months and you get a monster back. I appeal on you to be careful with your ears, this medicine will not let you use it 10 years, you will see.
I suggest taking a lot of water daily and drinking apple cider vinegar to cleanse the neurological system and support liver to remove this toxin that eventually builds up in the system. Retigabine is a relatively new drug and we do not know does it cause any long-long-long term side effects, for all we know, even if it stops tinnitus it might make you senile or blind in 20 years.
@Christian78 - so was it only yesterday you were without tinnitus or has it come back? i don't understand..
You're right on that term. I get confused with sodium and potassium both being involved. I'm unclear about the subscript terminology, Kv7.2 verses Kv2, and the exact target that AUT00063 has. Perhaps someone can clarify that? I know benryu had a post earlier, but I clearly didn't absorb that one correctly.
@Christian78 congrats to you. Hope side effects will continue to abate and you will have more quiet days!
@lapidus I'd love to try short term, but several years ago I had urinary retention issues. Those are really scary. So I'll decline unless my tinnitus gets really bad.
That said, urinary retention--while serious--is a RARE side effect to this drug. So if people never had this issue, it should be okay, especially short term. I'm thinking you could probably be on this drug up to a year with no permanent side effects--as long as you get your vision examined before taking it and every six months, like Mpt is doing. And, if @benryu is correct, this condition will be reversible so perhaps a year--or less--is all people will need! This is how I look at the drug on a risk/benefit analysis.
I'm happy for us all long term!
That's great news! Be sure to tell your neurologist you will have your eyes examined before and every six months while on the drug to make sure you don't get any eye damage. This way he knows you're on the look out for side effects. Physicians are often hesitant to give drugs with serious side effects, especially with a non-threatening condition. That said, if you present yourself as an intelligent, cautious patient--aware of the risks, but suffering greatly--he may agree to give you a trial run.
You need to do a little savvy salesmanship!
Good luck and tell us as soon as you see your neurologist!
@Mpt Great to see you've reclaimed your life!
But please get some customized ear plugs for loud events. They are very discreet and will protect your ears. You need to party cautiously, which is wise advise for anyone--with or without tinnitus!
We just don't know long term about this drug; and your goal should be to slowly get off it.
That said, you are an inspiration to everyone on this thread, and we are all grateful that you tried the drug and are keeping us informed about it.
That really rocks!
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
Well, let's see if I get the darn "re-quote" thing to work for me!!!
This above was from Saturday, and refers to @rtwombly 's summary in plain English (thanks for that!) of some of @benryu 's super duper descriptions of the working mechanisms in axons/synaptic junctions, etc. re T.
Maybe we need the oracle to clarify but given @benryu 's nice little pictures I would have to say that "Sodium-gated" channels and Potassium-gates screwing up the correct regulation and re-regulation of K. But hell I would have to re-read it all again to make sure. Here's the pics:
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c/o benryu:
This is basically the action potential, so when you hear a sound, the information is transmited to your brain in a similar fashion.
Imagine each cell (axone) is closed by a membrane (voltage gated channels):
Outside you have sodium, inside you have potassium, it's a resting state.
When you have a stimuli, sodium goes in through the sodium gate and it changes the sign, it's the depolarization
Then potassium gate open to let potassium out and change the sign again it's the repolarization
Then the sodium potassium pump evacuate the remaining sodium and the cell becomes ready for another cycle
The entire cycle looks like this:
Now what happens when you have T., the potassium voltage gates don't work very well, and don't let the potassium go out correctly, it means the sign never totally change and a continuous signal is transmited to the brain, in other word Tinnitus.
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OK, me again...
Now I know there is more clarification after this, but suffice to say I am not a neuroscientist, but DO want to make understand this all as fully and accurately as possible, so any increased clarification by anyone is much appreciated. Benryu does a fantastic job of making this stuff understandable, but others putting it into their words helps to clarify where there may be grey areas...PLEASE KEEP IT UP!
@cdog your addition yesterday was great, and exactly what I mean. Thank you! (God knows if I try and "quote" that section so am going to leave it out. However, you have all added to my understanding of why going after Glutamate hyperactivity/excitation this late in the game is probably pointless. It's an early action player with the T, and now we need to work on restoring the functioning of the 'gates' and the K balance, etc.
@cdog ref. the Wiki effort....I hear your regarding "expertise" and potential errors and so forth. But you know, the "white coats" and experts and ATA and all the pros have not exactly done a fantastic job of explaining or describing Tinnitus in ways that have helped me understand it like this thread has. And as you can see, I have been in this T game for a very long time. The summary has been more or less: "Shit happens, get used to it, maybe we will figure it out one day, so far it's a Pandora's Box of a puzzle, don't hold your breath."
Personally I would prefer a Wiki page titled :"Tinnitus ~ as described by Benryu and other normal humans, that may actually be more helpful than the official stuff you may read. You are free to accept or disregard anything presented. We hope for a change, it will be more understandable and comforting than the current great wisdom that includes bland statements such as:
If there is an underlying cause, treating it may lead to improvements.[4] Otherwise typically management involves talk therapy.[5] As of 2013, there are no effective medications.[4] It is common, affecting about 10-15% of people.[5] Most however tolerate it well with it being only a significant problem in 1-2% of people.[5]
There has been little research on the course of tinnitus, and most research has been retrospective.
Persistent tinnitus may cause irritability, fatigue, and on occasions, clinical depression[14][15] and musical hallucinations.
Etc., etc...."
Me again....Ha ha, can you believe it?! MUSICAL HALLUCINATIONS!!!! Sheeeesh, what a load of crap.
OK enough on this, though I guess I am at least going to try and decide withing the next few days whether to get some Potiga. For sure though I intend to 'disobey' the instructions and cut 100 mg pills into 50's. I can see no reason why this is given such emphasis by GSK as it is not an enteric-coated pill from what I have found to date or some "multiplex" chemical that needs all parts like can happen in capsules where there are lots of little tiny coloured balls of med making up the 'whole'. Maybe I will phone GSK and try to find out in a roundabout way c/o my "white coat" persona.
Later, and wonderful to hear or "guinea pig number 2" is getting some joy with this stuff.
Zimichael
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