Retigabine (Trobalt, Potiga) — General Discussion

[Zimichael]

I don't have those numbers in front of me and in fact my GP never actually gave Me them though he told me everything was totally fine and within normal range. Also I want to make sure that you know that the level I posted what ratio of BUN to Creatinine . my individual creatinine and BUN numbers were with in normal levels but the ratio was high. I'm officially done done done.

Sorry, I meant the "ratio", but you answered the question.

Would be interesting (sorry to use that word) to know if levels come down after supposed full plasma clearing of Retigabine (well "officially" 98% cleared) in 10 days...So say after two weeks.

Take care, and please can you consider a possible 'update/summary' of all this and how you reduced dose, etc. in a User's Report? It's been a while. Would be real helpful to know.

Best, Zimichael

 

[tomm]

Just got my results back on my blood work. My BUN to Creatinine Ratio is 25.7 which is above the normal range and can implicate acute renal damage. I had "mild urinary hesitation" which I thought was way better but now I'm freaked out. Thank you Potiga. I REALLY CAN'T STRESS THIS ENOUGH--- GET checked out because I never exceeded the normal range and in my life and have had ANY history of kidney problems. I was actually checked in late august just before I started potiga. This drug may be doing things to you that you don't know. GET CHECKED OUT.

What exact tests do you need to ask for SS? Happy to go and get these done.

 

[SoulStation]

What exact tests do you need to ask for SS? Happy to go and get these done.

You need at the very least a Blood Uria Nitrogen (BUN) level and a Creatinine level test. I would ask your GP just be honest.

 

[Juan Carlos]

Everyone freaking out about the urin test, consider this on the prospectus

7.4 Laboratory Tests 215 Ezogabine has been shown to interfere with clinical laboratory assays of both serum and 216 urine bilirubin, which can result in falsely elevated readings.

on that same PDF there is a study with 813 patients taking potiga (besides the pacebo group), in the study for sure this point 7.4 is considered and no renal failures detected. So probably more deep blood study must be taken considering those urine tests will give falsely elevated readings.

 

[Philemon]

I've found this ... still this question is open to debate and everybody using retigabine should be checked for this, but study's results doesn't seem to be alarming at all on that point

Special Populations:
Renal Impairment
In a single dose study, the retigabine AUC was increased by approximately 30% in volunteers with mild renal impairment (creatinine clearance 50 to 80 mL/min) and by approximately 100% in volunteers with moderate to severe renal impairment (creatinine clearance <50 mL/min), relative to healthy volunteers. The effect of mild renal impairment on retigabine AUC is not considered clinically significant, therefore no adjustment of the retigabine dose is recommended. However, adjustment of the retigabine dose is recommended in patients with moderate to severe renal impairment (see Dosage and Administration).

In a single dose study in healthy volunteers and subjects with end stage renal disease, the retigabine AUC was increased by approximately 100% in the subjects with end stage renal disease, relative to healthy volunteers. However, the effect of haemodialysis on retigabine clearance was not adequately evaluated.

 

[Juan Carlos]

Regarding to my previous post, @Viking and @Ricardo , did you have any symptom of renal failure??, or you stopped only because of the analisys results. Maybe the results were just falsely because of Trobalt and your kidneys were fine

Everyone freaking out about the urin test, consider this on the prospectus

7.4 Laboratory Tests 215 Ezogabine has been shown to interfere with clinical laboratory assays of both serum and 216 urine bilirubin, which can result in falsely elevated readings.

on that same PDF there is a study with 813 patients taking potiga (besides the pacebo group), in the study for sure this point 7.4 is considered and no renal failures detected. So probably more deep blood study must be taken considering those urine tests will give falsely elevated readings.

 

[Viking]

Regarding to my previous post, @Viking and @Ricardo , did you have any symptom of renal failure??, or you stopped only because of the analisys results. Maybe the results were just falsely because of Trobalt and your kidneys were fine

I've made an echo color doppler and not only urine/blood tests. In my case the failure was reversible stopping medications!

 

[rtwombly]

Those of you who keep up with the UE thread will see that I've started my dosage. The prescribing neurologist suggested starting with 100mg TID, so I jumped right in. I'm currently on day three, though on day one I only had a single dose, at 11pm.

After my first dose I sat in a quiet room for over an hour. There were no sounds other than the house settling and the click of buttons on my gamepad (volume off). I thought, maybe, that my noises had gone down a bit, but I don't spend that much time in that environment so it was hard to tell. But! I sleep in the same bed every night, and always hear a wooo wooo eee woo wooo back and forth, back and forth, up and down in volume. Monday night and last night, the volume was down about 50% and what was there was rock solid, no variation in tone or loudness. The high pitched eee was almost inaudible. I hadn't taken my usual 5mg time-released melatonin that night, so I woke up in the middle for about an hour. When I first woke up I couldn't hear any tinnitus. That's happened occasionally in the past 10 months, but it's always returned withing a couple of minutes, faster if I get out of bed. Monday night I had a good twenty minutes of near-silence (to state what we all know, I don't trust myself to identify silence at this time; it's been too long and I've changed too much). When the noises did return, they were milder than they've been all year.

Eventually I did get back to my usual level, but since then I've been taking my doses at 7am, 3pm, and 11pm, and each has lowered the volume after 40 minutes - 1 hour. No side effects so far.

I'm planning to call my neurologist in a couple of days and let him know I'd like to go up in dose. Don't want to get caught before the end of 1 month with the pharmacy asking why I need a refill so soon.

 

[RaZaH]

@rtwombly , very similar to my experience . Not a placebo, not a chance! However , T is insane between dosages for me, very nice though about an hour after taking.
Have to say that this drug does not agree with me , almost feels like I am sick , flu kinda feeling.

 

[Zimichael]

@SoulStation... and anyone, regarding this kidney function thing. Let's just step back a minute here and think about this.
There are some very good points being made above, about effects of any number of drugs on kidney function. The list is huge, (just Google it and you will see some "household names" in there - antibiotics, blood pressure meds, NSAIDs, etc.) so the desired thing has always been IMHO to have as few other drugs/meds as possible while "trialing" Retigabine. It just helps to keep the confusion level down.
Also, if something as "vital" as kidney function were going to get hammered big time by Trobalt, then it is surprising that it did not have such a big bang in the GSK acceptance trials. Plus, after the fact, it's the "Halloween Highlights" of blue lips and retinal changes that really came out of the bag. Not renal failure.

For sure, it is essential to know that one has good liver function and kidney function before trying Retigabine, as they are specifically addressed in the standard warning label...like a lot of drugs do. I have had so many standard blood panels and so forth over the 'mystery years' that I know quite well that my liver and kidneys are in fine shape, so did not bother. Anyone else though, who has been lucky enough to avoid lots of 'needle jabbing' blood draws over the years should probably do a standard automated blood chemistry panel, liver panel, kidney function, etc. just for the hell of it anyhow. They are pretty cheap even without insurance.

SoulStation. It would be good for you to ask your doc for your past results as a 'history' of BUN and Creatinine would be useful to compare to. Maybe you have been skirting on the edge of "high" for years an never knew it. (I keep all my test results just for this reason).
Anyway, as I was in the Emergency Room a few weeks back it only took a few moments for the usual "WTF???? on the part of the doc trying to figure out what was going on, so of course he ordered the default full Kahuna blood workup. I decided to get copies of my results from medical records yesterday and see what my BUN, Creatinine, and B/C Ratio were, then compared the current levels to prior tests from previous years...Interesting.

My Creatinine levels have been about the same 'for ever' hardly ever varying from around 1.0...My BUN levels have been all over the place: 10, 20, 14, 9, 13, etc. and thus most of my "ratios" hitting the L = Low level marker.
The other thing to note, if your lab uses the same reference ranges, (and they have changed on some tests over time so good to check that too!), the 'normal range' on mine is 15 - 24 for the Bun/Creatinine Ratio.
Thus if your levels are just 1.7 points above that and giving the H reading...to me that is not as panic inducing as something way higher. I am NOT saying just kiss it off, but to me good reason to see what the past has showed and figure out if there has been a trend here, or a 'spike' c/o the Potiga.
Seeing as the BUN and Creatinine are measuring different things re liver and well, blood metabolism loosely speaking, I would consider a GFR to probably be a better test of function. Urine Albumin too. But I'm not a doctor! If you want some peace of mind those are just suggestions.

Lastly....and this is "loose talk" OK, but is truly my experience. Over the years of all these darn blood panels I have had, for all kinds of stuff trying to find some clues to 'the mystery', I can't tell you how many times I have seen those little L and H readings next to some of the items in the lists of results. I of course point this out to the doc whoever, and the answer almost invariably is: "Oh it's nothing"...or: "These tests don't always say that much really"...or: "There are minor variations in lab error all the time"...etc.
Uummmmmmmmmm???...My best friend who is an ER doc kinda summed it up when he implied that he only starts jumping up and lighting matches when there are really abnormal readings, or there are patterns of supportive readings implying 'problems'. Otherwise he kind of shines them off.
After years of tests and indeed no 'answers' anyway, in my case, I pretty much quit doing tests. Just like when I was in agriculture for decades I gave up doing soil tests. They never showed me a darn thing really that I couldn't see better by just digging a hole in the ground and asking about the land's history.

SS, I would suggest looking at you 'results history' before jumping to too many conclusions. Though not in any way saying dropping Potiga is not a good idea for you. I think it is due to your concerns.

All the best... Zimichael

 

[sticky]

@rtwombly / @RaZaH ...more good news that this drug does have some effect on reduction.

Even if the side effects are there, or even too much to handle, I believe whatever is in this drug is a step in the right direction for spin off drugs.

I have never seen / read or experienced what is happening in this thread before. Something in rtg is doing something, surely this is not a placebo, surely.........

Peace and quiet to all

sticky

 

[RaZaH]

@sticky

No, not a placebo not a chance . If I will be forced to retract that I will eat my laptop
The correlation between when I take it and when I get a break is too strong..ca 40 min, no doubt.
What remains a question is if I would get the same relief with benzo, I have discussed this with others off board who have experiences with benzo and apparently with a benzo you care less and its not a true reduction.

I took one 100mg 40 min ago and I have 98% silence now. Barely there when I hold my ears , an hour ago it was insane.It will probably last for about 2 hours .At the very least its a clue for further research.

 

[rtwombly]

@rtwombly , very similar to my experience . Not a placebo, not a chance! However , T is insane between dosages for me, very nice though about an hour after taking.
Have to say that this drug does not agree with me , almost feels like I am sick , flu kinda feeling.

I feel a bit guilty, having a mild case of tinnitus anyway (close to habituation) and not getting side effects, rather I've had the good feelings that Juan Carlos has mentioned, though perhaps that's just a dawning optimism. There's a long way to go before I'll know what the final outcome will be, though, just glad to be along for the ride.

 

[RaZaH]

Dont feel guilty , feel happy

 

[Telis]

I have never seen / read or experienced what is happening in this thread before.

Really? Try reading this...

http://www.drugs.com/comments/alprazolam/for-tinnitus.html

Here is a quote from one of the user experiences:

My ears were ringing like crazy, I was almost to start break down and cry, but I was reading on one guys experience on how to best the ringing and everything he went thru I was going thru so I stsrted to do exactly what he said is to tune it out cause the more you think about it the worse it gets because with titinus you csn become your own worst enemy. So I keep reading on other testimonials and read alot of people took zanax and it seemed to quite the ringing down. So I had a zanax 0.5mg took it also because I couldnt sleep, the next day I woke up with a slight ringing and as the day progressed it went completely away Thank the lord.I truly believe that this oh s a condition thats related to the nrevous system there is s cure out.

This is from an article by Kevin Hogan way back in 96:

"76% of individuals using Xanax gained relief by more than 40% volume reduction in their tinnitus. It would take 8-12 weeks for the drug to make an impact."

Also from the same article:

"The ATA told me there was a medication called Xanax that could reduce the noise and did in most people that used it"

Source: http://www.kevinhogan.com/mytin.htm

 

[RaZaH]

Ok, I see , Might just be a similar effect after all ?

 

[Zimichael]

Regarding the Benzos v. Trobalt (though wish we had "pure versions" to test like AUT00063) I sincerely believe there is a difference in mechanism. Yeah GABA action from Benzos is a big time "calmer" for sure. So apparently are the "de-excitation" aspects of the relevant Kv's.
However, there are a number of people who have been on Benzos (are on Benzos) taking Trobalt...if the actions were null on the Tobalt but active on the Benzo, would there thus be any changes...as we are seeing?

Benzos never affected my T levels, they just affected "me"...No doubt they reduce many people's actual T levels, agreed. In the end though, for a "real answer" one would need a thorough controlled trial between the drugs involved.

If someone has taken a Benzo and did not get a reduction/effect on T volume like they are getting on Trobalt, that would be good to make clear in any updates. Useful information to add to our 'experiment' here.

Thanks... Zimichael

 

[RaZaH]

Regarding the Benzos v. Trobalt (though wish we had "pure versions" to test like AUT00063) I sincerely believe there is a difference in mechanism. Yeah GABA action from Benzos is a big time "calmer" for sure. So apparently are the "de-excitation" aspects of the relevant Kv's.
However, there are a number of people who have been on Benzos (are on Benzos) taking Trobalt...if the actions were null on the Tobalt but active on the Benzo, would there thus be any changes...as we are seeing?

@Zimichael , agreed . Would love to hear more about that .

 

[john2012]

about an hour after taking the pill I get almost complete silence.
!

Congratulations RaZaH
if something like this happened in the autifony trial, they'd no doubt be calling it a miracle drug.
We look forward to your continued progress.

... after about 16 years of tinnitus... the day that I experienced today let me see a glimmer of hope ....

... This is not an illusion, my tinnitus are calmer this morning (bearable).
I would say 6/10 against 9/10 before starting treatment (3 weeks ago).
... I have been amazed!
...This day was exceptional

To be continued ...

well done, keep us posted on your amazing progress

 

[RaZaH]

I do not want anyone to get the wrong impression , it does have an "effect" but...
I am not at all confident that there will be any real "progress" , at this point its only temporary relief.
And it takes me half an hour to write this post , so...

In fact , I should publish my next post unedited .... I have half a brain, if that.

 

[john2012]

Seeing a doctor on Friday to ask him to prescribe something to cope. But any suggestions welcome. .

hi steve,
i've mentioned this before but maybe with insufficient emphasis
lyrica reduced my T substantially for a few hours and is good for sleep
taken longterm its safer than benzos
try it, you'll be surprised

 

[1MW]

Where can i buy online trobalt with good price?

 

[dan]

Where can i buy online trobalt with good price?

Here:
http://www.canadapharmacyonline.com/DrugInfo.aspx?name=Potiga6804

 

[attheedgeofscience]

An update from a researcher which may interest some of you...

Dear Jakob,
Thank you for your interest in my research. There is one tinnitus update that I would like to share with you: we have developed and tested a novel and more specific Kv7.2/3 (KCNQ2/3) activator that works much better than retigabine both for epilepsy and for tinnitus. This novel Kv7.2/3 activator is more specific than retigabine and is less toxic, but keep in mind that all this work has been performed only in mice and rats. The manuscript describing this work in detail will be submitted for publication within the next month or so and I hope that the new compound will hopefully go to clinical trials soon.
I am not an MD and therefore clinical trials, effects of drugs on tinnitus sufferers, medical advice, and clinical applications of my findings in humans are outside of my expertise/control. I know the exact MOA of retigabine on Kv7 channels (you can read it in my 20xx publication in <name withheld>), but I do not know the MOA of retigabine on tinnitus and therefore I can not answer your question.

The quote is taken from a post in the ATA petition thread.

 

[locoyeti]

update:

i am currently on 1200mg, doing 300mg 4 times a day. i think i am having to take a higher dose because of my body weight. i feel as though i have gotten used to the drug, so the side effects are not bothering me as much. i have very rarely experienced H since i started this trial, which i would consider half the victory. although i get periods of near silence, i am also getting a few days (1 out of every 5-6 days) where i can hear my tinnitus for most of the day. on the days when i do have my tinnitus, the overall volume is about half what it was, and it has purer tones. i have had many more days of near silence though. i am at my wits as to what could cause the cyclicality of tinnitus, the random spikes, which would describe my tinnitus since it began (i know many of you have the same kind of tinnitus). my current theory is that sleep has a lot to do with it, and it too (sleep) is largely a mystery as well. the combination of this drug and tinnitus has made this connection a lot clearer to me. brain waves are a topic i will explore in the future, and that might have something to do with it (oscillations). i have another month on this drug and we will see what happens, i still have hope that it will smooth it all out to (near) silence

just one note on dosing. i think it is possible, especially for those that work, to take what i would call a hatchet dosage pattern. take light dosages during the work week, and ramp it up on the weekends. i think @tomm is doing something like this so i hope to see how he is doing.

@Christian78 my friend, how is the taper down going?

 

[Juan Carlos]

Totally agree, sleep is super important. Today also slept 9h straight and woke up near silence. But at 4am when I woke up to take the pill i was hearing it

Now I can tell better about side effects on me: I get "high" exactly about 40-50minutes after taking the pill and for 30-40 minutes. Thats when someone can't type very fast and should not drive. The rest of the time i'm perfect, even I frankly prefer to be "high" if im not at work

If this high 30 minutes are bothering someone because he dont like it or not good for work. Take this advice (still didn't try). At pill time, dont take full dose, take the half, and one hour later take the other half, it will be more bearable at work. When not at work i think i will take the full 300mg and enjoy it
Anyways, I think it would be very good for the T to have a "Retard" version of Retigabine to have more constant blood concentration (As AUT63, wich you take 4 pills = 1200mg once a day because is retard)
@rtwombly good for you to have so much effect on so low dosage, I have to admit i didnt have so much effect on T on that dosage. What's your weight? im 81kg, and you @locoyeti ?

Yesterday afternoon I also felt that T was in my head instead of my ears, I will pay attention of that next days, sometimes it feels so subjective. My theory is that RTG shut down first ears-T so it allows me to listen more the the head-T

I also have this effect: when getting into a silent room, I almost feel no T, and then in few seconds feels like its increasing, like the more attention you give it, the lounder sounds, I wonder if its just a psyco effect, or it really gets louder when paying more attention to ears=activate the audio brain zone.

 

[nogood]

I have this effect usually and esp on quite days. It will slowly creep back and gets louder and louder as time passes in quite places or when trying to sleep.
its jst that subconsously we start to give the T more attention.

By retard u mean slow/sustained release version. many people here commented abt getting high enough dose of this to supress the T at an instance. Not slowly dampening it. I remeber reading like break open the door instead of slowly nudgeing the door.

Since u are already on the drug maybe it would be best u avoid total silence for week and stop listening for the T. To help keep the brain activity towards the T low. I think no harm in trying this, and for sure u will know if its placebo effect or not.

I also have this effect: when getting into a silent room, I almost feel no T, and then in few seconds feels like its increasing, like the more attention you give it, the lounder sounds, I wonder if its just a psyco effect, or it really gets louder when paying more attention to ears=activate the audio brain zone.

 

[Martin69]

I also have this effect: when getting into a silent room, I almost feel no T, and then in few seconds feels like its increasing, like the more attention you give it, the lounder sounds, I wonder if its just a psyco effect, or it really gets louder when paying more attention to ears=activate the audio brain zone.

I think that is also what the TRT people try to teach: The less importance you give T, the better.
If you do not think about T, not listen to it, distract yourself with something else, T goes into the background.
Someone told me, we are "first-class detectives" regarding our hearing and T. I even read about something who got T from a yoga course when listening in quiet for all kind of sounds.
Haven't found the way yet making T a non-issue in my life. I guess it would be easier if it would be less loud.
But I am going off-topic again. Sorry.

 

[rtwombly]

@locoyeti, can you give an assessment or your rationale for the 300x4 approach over 400x3? I've seen half-life estimates range from 5 to 7 hours, and bearing in mind that's only HALF-life, it seems like 400x3 is a much higher dosage at peak. I'm not not freaked out about my kidneys, but I'm far from unconcerned.

BTW, if anybody is interested, I learned a bit about retinal pigmentation from my optometrist that I can share. Ask on here if you want to hear about it.

 

[RaZaH]

BTW, if anybody is interested, I learned a bit about retinal pigmentation from my optometrist that I can share. Ask on here if you want to hear about it.

@rtwombly , yes , please share.