Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
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SteveToHeal
Member
That is great news @Mpt. Good to see you resurface. Hopefully we will have more Retigabine recruits following in your footsteps, experiencing good results. I wouldn't mind trying it myslef if I could get a prescription.
The greater the body of evidence we have that it cures t, the more chance the rest of us have getting a prescription. The fact that you were only on it for x amount of months, have been off it for several weeks and still no t, is also re-assuring that the long-term side effects (blue lips and eye issues) will not be hit.
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
.....We don't have an emoticon for "My head is spinning!" But sheesh it sure is this morning.From Dominican Republic, to Bristol, to any EU country, to India, to cappuccinos in Rome fueling a pharmacy tour...Oh and then a cruise missile to land on Merry Chemical in China to blow up their "melamine" stash for good measure.
I tell ya, this is exciting stuff. Makes getting it from (oh...maybe "not" getting it from) Canada online seem tame.
Seriously, Markku, it does seem like we need a sort of database thread of how and where the availability options are, and @dan can I volunteer you for that? You did an excellent job of formulating a coherent price structure for the Italy venture. Though wouldn't it be more for a return airfare 0r were you planning on staying in the eternal city?
Also @rtwombly a really excellent summary of the reasons etc. for being "into" the Potassium channel modulators and for sensible inference that Charles Large, who initially worked on Retigabine most likely zeroed in on the Kv3's for a good reason (Autifony).
On @Viking 's ref to Cinnarizine etc. I have not had much luck yet figuring this one out as it looks like plain old "Benadryl" (anti-histamine) plus a Ca channel blocker. The inference to K are convoluted and few. Like this mish mash:
The antinociceptive effect of cinnarizine was prevented by co-treatment with the adenosine receptor blocker theophylline or by the ATP-sensitive potassium channel (K(ATP)) blocker glibenclamide.
Though later I found this: The mechanism by which cinnarizine modulates pain transmission is likely to involve adenosine receptors and KATP channels.
That all got my head spinning to...Did not see KCNQ's or KCNC's anywhere yet.
Umm...that's about it for now. I need some motion sickness pills then maybe I can figure out my plan of approach to how to take Retigabine and deal with the H, problem. (Hint for rt. ~ Maybe...Gasp!!!...taking a benzo at the same time?)
Best to all and...Uhhhh couldn't there be some "internet doctor" that could prescribe Retigabine??? with a "valid" prescription? I mean you can get a "degree" online for a fee, and about anything actually, so is this an off the wall idea???
Zimichael
I'm of the opinion that taking a benzo should not be tried until you've reached your final dosage, and only then with a cautious, gradual approach. We want the neural plasticity to imitate the proper behavior. If a benzo actually has the effect of making that happen quicker, it could entrench the wrong behavior, the nudging the door effect Zimichael talks about. I think you should aim to get a month of quiet under your belt before adding any helper chemicals.
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
rt. I hear you on this, but 'realistically' I could hardly handle the increased H at 600 mg/day total. I was very relieved to know that I would only be at that dose for 2 days (my "body/wt.-Matt equivalent" target). At somewhat lower doses for longer (450 mg total, and 300 mg total) I did not notice any "dissipation" of the H over time, but obviously it was not that long, so still an open question re a 'temporal' connection that may decrease if just hung out at a highish dose for a while. [Would need pills, pills, pills!] Some of the other side effects like the headaches eased off quite quickly on a fixed dose, thus I hesitate to call the > H a "side effect". I mean we were trying to target T and by inference the H, so.....???
I don't know. Looking at a potential target dose of 1200 mg/day total...Wheeeewieee!!! I shudder more than a bit. It's easy to say keep in absolute silence for a month, but do you realize how long each hour felt during those harder days of taking the Trobalt? By the time I started to taper it felt like a decade had gone by. I have a lot of experience with what I will just call "time warp c/o suffering" and had it not been for that I would have cracked and stopped. The H felt like it could become "severe-permanent" at any moment even in near silence...thus my radical sound control, etc., etc.
So to go back there willingly, and to consider doubling the target dose?! Sorry but I need more of a strategy than I have at present despite my increased belief in Retigabine's potential. Remember too I do this 100% alone. No-one else to go shop for groceries, or assure me it will be OK when I freak out 'and can't take this any more'...Hence the GABA idea. Which pains me as I am about to completely dump the Clonazepam (down to 1/8 pill now at bedtime).
Well, there you have a bit more than before I guess on the: "True Confessions of a Trobalt Trial by Zimichael"...Ha, ha. Well easier in retrospect for sure. But seriously I am up for suggestions here!!! Anyone has any great ideas I am open to hearing them. My dentistry 'hard part' and 'noisy part' should be done by mid-late November (got delayed). If I get Trobalt from Canada-online then we know that planning more than 4 weeks in advance is a very good idea! I have whatever prescriptions I need so that is not an issue...But if a "next time" need a bleedin' reliable supply!
Oh, one other "side effect" of the Trobalt (and I have been hinting at this to Danny Boy, IF it does not work for him)...Ever since I came off it I have been much more pissed off at my tinnitus. I don't think it is louder. I just know that the "hope" that I had was genuine and deep (ideal setup for a placebo, if you recall that discussion!). It allowed me to risk thinking I may get a little relief, or a semblance of my life back, etc. And that did not happen.
The residue has been "pissed off"...not disappointed really, as I have tons of experience with that! I just want the bloody ringing screech GONE!!! Like big time GONE!!!...Sigh. I guess I will get over it, or try again huh. Though pissedness can = recklessness, so you on-the-ball folks will see why I want to fly the GABA idea through more than just myself!!! Could be super dumb.
Best, Zimichael (Yeah, yeah...see I'm still the same in most respects. Can't write short posts. Trobalt did not change that).
I am now pulling all the stops to try and get this drug , called my doctor and told him I either swallowed that pill by tomorrow or I am swallowing a bullet. If that does not work , I guess I am preparing my final meal. 
@Zimichael You misunderstood me a little. Didn't mean you should shut yourself off from the world to deal with your hyperacusis fora month, meant that you should aim to get the best possible result from Retigabine before adding any other drugs to the mix. Drug-induced silence, in other words.
So, are you saying you got continually more hyperacusis when you went up in dose? You could tell a difference between 300mg/day, 450mg/day, and 600mg/day?
And it did go back to normal after you tapered off the drug, right? I've mentioned your experience in other posts and I want to get it right.
To me, I sympathize with your reluctance, but the most important thing to me would be that the increase was temporary. The treatment is potentially permanent. I'd look to get back on it as soon as your jaw heals sufficiently. You may even find that the second attempt is not as difficult as the first in terms of side effects.
But I don't have to pay for the stuff, so that's a whole avenue I don't have to consider but you do. Based purely on the experiences people have had, I just think you never hit a dose that was high enough to cause action potential inhibition by potassium channel activation. Maybe that dose is 900mg/day. Maybe it's 650. Maybe it's 1223.487. In programming we call this a horizon problem. You can only search so long until you either run out of time or capacity, and it's pure guess work whether you were a million miles from solution or it was just over the horizon. In your case, based on other people's experiences, especially Christian78's, I think you weren't that far, but also not there yet.
So, are you saying you got continually more hyperacusis when you went up in dose? You could tell a difference between 300mg/day, 450mg/day, and 600mg/day?
And it did go back to normal after you tapered off the drug, right? I've mentioned your experience in other posts and I want to get it right.
To me, I sympathize with your reluctance, but the most important thing to me would be that the increase was temporary. The treatment is potentially permanent. I'd look to get back on it as soon as your jaw heals sufficiently. You may even find that the second attempt is not as difficult as the first in terms of side effects.
But I don't have to pay for the stuff, so that's a whole avenue I don't have to consider but you do. Based purely on the experiences people have had, I just think you never hit a dose that was high enough to cause action potential inhibition by potassium channel activation. Maybe that dose is 900mg/day. Maybe it's 650. Maybe it's 1223.487. In programming we call this a horizon problem. You can only search so long until you either run out of time or capacity, and it's pure guess work whether you were a million miles from solution or it was just over the horizon. In your case, based on other people's experiences, especially Christian78's, I think you weren't that far, but also not there yet.
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
rt. OK, I get you I think, though still a bit confused by... "Drug-induced silence, in other words." Also, I can't see any other options than rigorous isolation to avoid any sound "Oooooops'es" in the outside world. Hence my 'fishing' for ideas on that problema...If indeed a ramp up beyond 600 mg/day does not get me so freaked I can't handle it.
So, are you saying you got continually more hyperacusis when you went up in dose? You could tell a difference between 300mg/day, 450mg/day, and 600mg/day?
Yes, most definitely....Hence my concern.
At this point if I re-try my only idea is hardly even an idea (if I discount the GABA), and that is to hope that the H eases off over a period of time. However, seeing as it is not a classical "side effect" but a target, I can only leave it as a hope currently. Generally I like at least one back-up plan rather than just hopes but may not have that luxury. Also of course I would need a goodly supply in case said 'easing off' took a couple of weeks. At the higher doses the pills fly out pretty quickly.
And it did go back to normal after you tapered off the drug, right? I've mentioned your experience in other posts and I want to get it right.
Yes it did go back down. It took about four days after my final zero point (and of course fast taper prior to that) before I felt like it had come close to "pre-Trobalt" level. Thus a week say, to be sure that it was OK again?!
To me, I sympathize with your reluctance, but the most important thing to me would be that the increase was temporary. The treatment is potentially permanent. I'd look to get back on it as soon as your jaw heals sufficiently. You may even find that the second attempt is not as difficult as the first in terms of side effects.
Indeed it may be, and indeed I am potentially more open to that now than I was when I got off the Trobalt. (The guise of forgetfulness, or more science?!)
But I don't have to pay for the stuff, so that's a whole avenue I don't have to consider but you do. Based purely on the experiences people have had, I just think you never hit a dose that was high enough to cause action potential inhibition by potassium channel activation. Maybe that dose is 900mg/day. Maybe it's 650. Maybe it's 1223.487. In programming we call this a horizon problem. You can only search so long until you either run out of time or capacity, and it's pure guess work whether you were a million miles from solution or it was just over the horizon. In your case, based on other people's experiences, especially Christian78's, I think you weren't that far, but also not there yet.
Yep!...And yeah, this is all very relevant re $$$ cost for me. It's hard to pay for potentially getting the pants scared off me from more H, so it would have been nice to have had a 'flicker of a hint' that it was hitting the T in a good way.
But it is what it is.
Hope that makes it clearer for you...Best, Zimichael
So, are you saying you got continually more hyperacusis when you went up in dose? You could tell a difference between 300mg/day, 450mg/day, and 600mg/day?
Yes, most definitely....Hence my concern.
At this point if I re-try my only idea is hardly even an idea (if I discount the GABA), and that is to hope that the H eases off over a period of time. However, seeing as it is not a classical "side effect" but a target, I can only leave it as a hope currently. Generally I like at least one back-up plan rather than just hopes but may not have that luxury. Also of course I would need a goodly supply in case said 'easing off' took a couple of weeks. At the higher doses the pills fly out pretty quickly.
And it did go back to normal after you tapered off the drug, right? I've mentioned your experience in other posts and I want to get it right.
Yes it did go back down. It took about four days after my final zero point (and of course fast taper prior to that) before I felt like it had come close to "pre-Trobalt" level. Thus a week say, to be sure that it was OK again?!
To me, I sympathize with your reluctance, but the most important thing to me would be that the increase was temporary. The treatment is potentially permanent. I'd look to get back on it as soon as your jaw heals sufficiently. You may even find that the second attempt is not as difficult as the first in terms of side effects.
Indeed it may be, and indeed I am potentially more open to that now than I was when I got off the Trobalt. (The guise of forgetfulness, or more science?!)
But I don't have to pay for the stuff, so that's a whole avenue I don't have to consider but you do. Based purely on the experiences people have had, I just think you never hit a dose that was high enough to cause action potential inhibition by potassium channel activation. Maybe that dose is 900mg/day. Maybe it's 650. Maybe it's 1223.487. In programming we call this a horizon problem. You can only search so long until you either run out of time or capacity, and it's pure guess work whether you were a million miles from solution or it was just over the horizon. In your case, based on other people's experiences, especially Christian78's, I think you weren't that far, but also not there yet.
Yep!...And yeah, this is all very relevant re $$$ cost for me. It's hard to pay for potentially getting the pants scared off me from more H, so it would have been nice to have had a 'flicker of a hint' that it was hitting the T in a good way.
But it is what it is.
Hope that makes it clearer for you...Best, Zimichael
undecided
Member
Status: It's on its way
Your item, posted on 24/10/14 with reference ***********GB has been passed to the overseas postal service for delivery in GREECE.
It appears that two 300mg x 84 Trobalt packages are headed my way. Finally, after a month of waiting.
Royal Mail FTW.
It appears that my two month experiment is about to begin.
Your item, posted on 24/10/14 with reference ***********GB has been passed to the overseas postal service for delivery in GREECE.
It appears that two 300mg x 84 Trobalt packages are headed my way. Finally, after a month of waiting.
Royal Mail FTW.
It appears that my two month experiment is about to begin.
Good luck please keep us updated. I hope it eradicates your T.Status: It's on its way
Your item, posted on 24/10/14 with reference ***********GB has been passed to the overseas postal service for delivery in GREECE.
It appears that two 300mg x 84 Trobalt packages are headed my way. Finally, after a month of waiting.
Royal Mail FTW.
It appears that my two month experiment is about to begin.
SoulStation
Member
I have mild H definitely sound sensitivity . I have noticed it doesn't really do much for that IMO. But it's not that big of an issue with me.
SoulStation
Member
Maybe a little sensativity but I can also also possibly attribute that to my wearing ear plugs for 3-5 hrs some days while teaching.b
Your local laws will decide that. Here in America it is generally tolerated, but officially only I think only the state of Maine has a law allowing overseas pharmacies to accept orders. The FDA policy is that it is against the law, but the law is not worth enforcing so long as a person is only importing for their own use.
You'll have to research German import laws and regulatory agencies.
This paper was published recently (24 October 2014). I didnt read the whole thing since all the science stuff is a bit too complicated for me but you guys might wanna take a look at it. Maybe it deserves it own thread, but they mention the potassium channels.
"In addition to synaptic modifications, sound-evoked activity can be modulated by a neuron's intrinsic excitability, which is largely determined by the expression or biophysical properties of voltage- and Ca2+-gated ion channels. Acoustic trauma has been shown to alter the intrinsic properties of granule (190) and fusiform cells (68, 191) in the DCN; these alterations were shown to occur in animals with behavioral evidence of tinnitus. Furthermore, the enhanced excitability was likely due to decreased conductance of Kv7 family of voltage-gated potassium channels (also termed KCNQ) (191). Consistent with this, channel modulators that enhance potassium currents have been shown to suppress behavioral evidence of tinnitus (192). Increased pyramidal cell excitability has also been observed in the AC specifically in the frequency region associated with hearing loss and tinnitus perception (188, 193)."
http://journal.frontiersin.org/Journal/10.3389/fneur.2014.00206/full
"In addition to synaptic modifications, sound-evoked activity can be modulated by a neuron's intrinsic excitability, which is largely determined by the expression or biophysical properties of voltage- and Ca2+-gated ion channels. Acoustic trauma has been shown to alter the intrinsic properties of granule (190) and fusiform cells (68, 191) in the DCN; these alterations were shown to occur in animals with behavioral evidence of tinnitus. Furthermore, the enhanced excitability was likely due to decreased conductance of Kv7 family of voltage-gated potassium channels (also termed KCNQ) (191). Consistent with this, channel modulators that enhance potassium currents have been shown to suppress behavioral evidence of tinnitus (192). Increased pyramidal cell excitability has also been observed in the AC specifically in the frequency region associated with hearing loss and tinnitus perception (188, 193)."
http://journal.frontiersin.org/Journal/10.3389/fneur.2014.00206/full
people....its music of the brain that everyone hears in silence, jastebroff says this is unrelated to damage... granule and fusiform cell aren't mentioned in the "model"- they must not exist... look away flat-earthers, look away so that science doesn't interfere with jastebroff's narrative
What's funny about this one and one locoyeti posted is that they really focus in on the KCNQ as where the problem lies, yet that's not where Autifony is focusing. I really wonder if Autifony is going after Kv3 as a way to avoid side effects, or if they have data that suggests it's not necessarily Kv7 channels that are hyperpolarized, or that it doesn't matter, the fix is the same.
@Mpt Hey man, now that you're back for at least five minutes
do you mind giving a little more detail on how you are now?To me, the biggest proof you were getting what you needed from retigabine was when you talked about going to a loud event (was it go-carts?) with music and craziness most of us would avoid like the plague in our ill-adjusting states.
Have you been to any other loud events (even movies in the theater) since you came off your last dose?
When you walk into a noisy room now, does it stay noisy or does it seem normal after a few minutes?
Do you find it harder than most people to understand conversations in a noisy restaurant?
Did you have before, and do you have now, any other symptoms, like ear pain?
Please let us know if you can, Mpt.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
I will be seeing the Swiss neurosurgeon, Professor Jeanmonod, next week (in Switzerland). If there are any specific questions in relation to Trobalt, I can ask those when I see him.
Fire away...
Fire away...
Why might the Kv7.2 and Kv7.3 be important in the modulation of tinnitus (I believe that was per Dr. Thanos Tzounopoulos) since they are not particular to the auditory system?
Is neural plasticity likely to replicate the effects of a potassium channel opener like Trobalt, and if so, how long would the drug need to be taken before such a change took effect?
Are the suggested dosage restrictions on Trobalt based primarily on lack of efficacy for seizures at doses higher than 1200mg, or are they motivated by safety concerns, and if so, are those concerns legitimate?
Edit:
Ooo! Forgot a good one.
Are there any anti-oxidants, medications, foods, or lifestyle changes that might protect against the side effects of Trobalt, in the short and long term? Particularly the forgetfulness, difficulty thinking, and blurry vision in the short term, retinal pigmentation changes in the long term.
SteveToHeal
Member
1. Does he believe Trobalt can be used to effectively treat tinnitus?
2. (Not sure if he could help with this one... ) If so, can he recommend the best way for a trialee to get a steady supply, regardless of country? What is the best motivating documentation that needs to be shown to a neurologist?
3. How long does he recommend we take it for?
4. What dosage schedule we should attempt?
5. Are the described side effects cautionary or are they more serious and should we taper off as soon as they appear?
6. Does it matter what the source of the t is, noise exposure, infection etc?
7. Does the dosage and length of treatment vary for people with chronic t compared to acute / post-acute t?
Hi everyone,
@SteveToHeal: thank you for these questions!
Here are some questions I ask myself on Trobalt to complet STH.
8. I wonder if and how Trobalt can induce a change in the long therm KV7 channel function by restoring a normal level of activity. @Mpt Informed us of its effectiveness after discontinuation but each person may react differently.
9. Would it returns on retinal pigmentation and other side effects in the long run if already prescribed this medicine? This is only related to the taking of Trobalt during the patient's life could continue .
After that, I think it is difficult to give an answer because the drug seems too bee recent.
@SteveToHeal: thank you for these questions!
Here are some questions I ask myself on Trobalt to complet STH.
8. I wonder if and how Trobalt can induce a change in the long therm KV7 channel function by restoring a normal level of activity. @Mpt Informed us of its effectiveness after discontinuation but each person may react differently.
9. Would it returns on retinal pigmentation and other side effects in the long run if already prescribed this medicine? This is only related to the taking of Trobalt during the patient's life could continue .
After that, I think it is difficult to give an answer because the drug seems too bee recent.
undecided
Member
I have a question for prof. Jeanmonod...
- Do you know what Trobalt is?
(an important opening question, i believe
)
- Do you know what Trobalt is?
(an important opening question, i believe
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