Retigabine (Trobalt, Potiga) — General Discussion

[Telis]

We don't know if it will reduce it permanently or not, there maybe many factors for this, your own T, your own sensitivity to the drugs, the way you taper down (and @Mpt seems to be on a good way for permanent effect) ... regarding efficiency, we still need a randomized double-blind study to be sure, but based on what i've read about drugs for T (none i think, except retigabine it seems), the theoretical rationale beyond retigabine's use for T, what i'm reading here and my own experience, my feeling is that there's still not other potent drug as retigabine for T ...
Regarding side-effects, sure the safety profile of retigabine is far from being good, but most of side-effects seems to be transitory (except for long-term use, which is not a good idea i think), and there's many drugs out there that have a more risky profile, so if one do all the test needed, it should be ok in most cases (but my view on this may be biased 'cause of moderate side-effects i'm experiencing)

Putting the theoretical rationale aside and the one person that supposedly experienced close to a cure, really this treatment doesn't seem to be all that positive considering the risks. Just my opinion. Having said that, hope this shit works!

I also hope people don't have to experience permanent side effects or serious health issues for life in this little experiment. T is bad enough to deal with.

 

[dan]

Fair enough...good points. I really really hope it helps. I just have this feeling that reduced cognitive ability= low T....and you could find this same effect in a number of much safer drug therapies. Hope I'm wrong.

I don't know about you, but I got wasted on booze and my T was just as loud-no effect.

 

[Juan Carlos]

Your muscles get relaxed, and you cant squeeze all urine out, if you sit and wait a 2-3 minutes you will do it, standing and pee can be problem. I had it. And I had and have orange urine specially if i drink little water.

I dont beleave you have serious problem. Urine can be orange to brownish, depends, and there is no blood in it, just depends how much water you take.


I dont know why but if I am only one who think.
We have some "doctors" here who like to sabotage and scare us.

If you agree with statement give me agree comment.
if you dont agree give me funny sign.

It is just democratic way to have opinion on something. And you will understand what I asked to be voted on, if you do, if not good again

On other hand I believe trobalt + tinnitus = side effect - good effects, higher dosage can give bad side effects and make you drugged, lover can make you feel batter but have worse t.

We who use trobalt, what you say? more trobalt, less t, more side effect/ less trobalt less side effects, more t?

Thanks, you say you HAD it, not now anymore? also pee less than before trobalt? did you check blood/urine for that. I guess Im more worried than I should, while i can pee there shouldn't be any problem.

BTW, you are already long time on this, Are you noticing lasting improvements over the time with same dose, as mpt experienced?
8h after the pill, T usually coming back, doest it to the base level?

 

[Telis]

I don't know about you, but I got wasted on booze and my T was just as loud-no effect.

I have found that Zoplicone, adivan, and even T3 can reduce my T if I take enough. These are just a few...I'm sure there are a lot more. I would not advocate using them but I'm sure you see my point.

I'm not saying retigabine can't/won't work but I'm a little skeptical of reports from people that are high and experiencing white outs, amnesia, drunkenness etc. nothing to do with the credibility of these members but this must mess with your perception, how could it not.

 

[dan]

yes I understand what you're saying, and for some people just popping a Clonazepam will lower tinnitus.

 

[Viking]

I wish I could say many things, but I am very tired and would be useless. One thing is certain. We are HEROES! For many years trying to fight against tinnitus, and in addition to the sentence of ENT ugly "you have to learn to live with it" we have filled with crap drug. Not to mention the business of food supplements and hearing aids TOTALLY USELESS! I think of the huge gains of the pharmaceutical manufacturers of SSRIs. Clinical trials totally false. Gabapentin passes for years as a drug "miraculous" but PERFECTLY USELESS and finally sanctioned: http://www.nytimes.com/2004/05/13/business/13CND-DRUG.html
The proceeds have been definitely higher than this trivial plea bargain.
Even today when I read the package insert: THE MECHANISM GABAPENTIN IS NOT KNOWN .... wtf!?!?!?!?!?
When I think about tinnitus, I can not help but think of a body very close to the cochlea called the labyrinth, if that does not work evil sends wrong signals to the brain and people suffering from vertigo. So since the late fifties, many pharmaceutical companies have developed products and effective drugs for the control of vertigo, as Stugeron, arlevert, Stemetil and many others. Centrally acting suppressing the flow of erroneous signals coming from the periphery and thus helping the patient to control the symptoms. Why not have done the same with the cochlea ??? We are here today, making attempts really brave, and we are frightened by Nagler as individuals who have made a fortune with Jasterboff and our despair. I hope I will be indicted but not enough for me. Go to hell. They did not give any concrete contribution. There are many molecules in circulation but clinical trials have always stopped at the first stage .... NEVER ABLE TO FIND THE WHY ...! Many people are buying neramexane from China, the other Caroverina from India (and for your information the caroverina is used successfully in Austria, Switzerland, France, India). FDA does not approve even though the only side effects in individuals older than 65 years are: fatigue, high blood pressure, dizziness ...
I'm linger unnecessarily on your courage and will conclude with a passage from the Gospel according to Luke (10:21): In that hour Jesus, moved by the Holy Spirit, exulted and said, I thank thee, O Father, Lord of heaven and earth, because you have hidden these things from the wise and prudent, and hast revealed them unto babes! Yes, Father, for so it seemed good!
sorry for the off topic
Good day to all

 

[dan]

Who is frightened of Nagler? I'm not frightened of Nagler...
But I am not sure that asking the help of a TRT professional, who makes money from tinnitus management, to handle a petition for a drug that could potentially cut in on his profit margin. It is just a common sense business decision - nothing personal. Read the mission statement of the BTA - To better manage tinnitus forever and ever!
I mean the good doc has consistently stated that he believes there will NEVER be a cure for tinnitus - never ever, ever never never ever- but he still donates towards it ;-)

 

[Viking]

Who is frightened of Nagler? I'm not frightened of Nagler...
But I am not sure that asking the help of a TRT professional, who makes money from tinnitus management, to handle a petition for a drug that could potentially cut in on his profit margin. It is just a common sense business decision - nothing personal. Read the mission statement of the BTA - To better manage tinnitus forever and ever!
I mean the good doc has consistently stated that he believes there will NEVER be a cure for tinnitus - never ever, ever never never ever- but he still donates towards it ;-)

My grandfather died of ulcer perforating. He was a great doctor. In the years before the doctors had said that there would never be a cure. One year after his death, omeprazole ....! He would have been saved with a cure for 15 days

 

[dan]

My grandfather died of ulcer perforating. He was a great doctor. In the years before the doctors had said that there would never be a cure. One year after his death, omeprazole ....! He would have been saved with a cure for 15 days

Are you serious?That is the saddest thing I ever heard.

 

[Viking]

Are you serious?

yes, why?

 

[dan]

...because it is just horrible.

 

[Juan Carlos]

http://epilepsytalk.com/2012/09/24/potiga-the-first-aed-of-its-kind/

It can also cause a "relaxed bladder" which results in urinary retention, or difficulty in emptying the bladder fully. When that occurs, it's generally within the first six months of treatment, although it can also occur later. Because of the risk of urinary retention, urologic symptoms, such as the inability to start to urinate, weak urine stream, or pain with urination, should be carefully monitored. Urinary retention is a unique side-effect among medications used to treat seizures.

ok, just monitore, wont stop while i can pee every day, it should go away with time, will try to be less worried about this

 

[Christian78]

You'll never get 10 boxes of Retigabine without a prescription into Canada.

But i have prescription, and i sat only max 7 days to get 2 cheep tickets

 

[Christian78]

Thanks, you say you HAD it, not now anymore? also pee less than before trobalt? did you check blood/urine for that. I guess Im more worried than I should, while i can pee there shouldn't be any problem.

BTW, you are already long time on this, Are you noticing lasting improvements over the time with same dose, as mpt experienced?
8h after the pill, T usually coming back, doest it to the base level?

i think i said somewhere i did check after one month on meds and it was ok

 

[Cassandra]

Anyone who knows what caused @Mpt 's T?

 

[Mal]

Anyone who knows what caused @Mpt 's T?

Hi Cassandra. See below:

Im from the US, 35 years old, T for 5 months... mine was from getting my ear syringed, about 2 hours later while standing in the shower a siren went off in my ear

 

[rtwombly]

All, I now have a prescription for 100mg TID (300mg total) of Potiga. It's just a one month, no refills, and I'm scheduled to see the doctor again in three weeks. Not sure if he just wants to check efficacy, side effects, or do some tests.

@locoyeti, @cdog, anybody else with experience, any advice? 300mg is certainly enough to hear a difference from some people's experience, but I'm slightly concerned that being on a low dosage too long will hurt my chance to make a homeostatic change.

I'm also still looking into the $$$ side of things, especially as I'm between jobs at the moment.

 

[Zimichael]

@Zimichael u also had retention right? Did you check blood and urine for that?

@Juan Carlos ... No I did not have any urinary retention, at any time or any dose level. That information I got about it was 'in preparation for' the possibility.
@Danny Boy ... In relation to Nettle tea and all that (diuretics). Please read the recommendations I summarized from a specialist in the field here: https://www.tinnitustalk.com/thread...-—-general-discussion.5074/page-49#post-64061 [In case I blew it with this "link" it is post #1450 on Page 49 of this thread].
You DO NOT want to add a bunch more liquids if experiencing urinary retention! It can exacerbate the problem quickly and seriously no mater how "diuretic" they may be. If critical, get a catheter in there fast.
Juan Carlos, I suspect you issue will calm down as you are still peeing, which is the main thing. Take your time, sit on toilet, relax pelvic area, and just 'squirt' and wait and 'squirt' (dribble if needs be) some more. Repeat until more or less empty. The muscles will hopefully release properly in due course as you get used to this, and indeed go to pee much more regularly than normal. Does not matter if just a small amount of pee. Just doing it keeps the bladder "aware" of what it is meant to do. [If you want more details you can send a picture to us all and we can comment on your 'position' and 'apparent degree of relaxation' - like smiling and so on... ]

@locoyeti ...Continued good news on your front. Excellent! Thank you too for the detailed updates.
One point though. I was wondering about the "Pink Noise" blasting away...Ummmmmmmm, in relation to the H. I would find that intolerable at the best of times. Have you considered turning it off in your current trial situation and "results" to date? If I may encourage that even just temporarily, I would like to know your response...you know why. And sorry to drop a "guinea pig" on you, but I suspect you share my "scientific" bent with all this. H. is a real bastard and the Retig. action in relation to it really gets my antennae twitching!

@undecided, @Ricardo & @SoulStation ...Hey hugs guys! Not meaning to leave you out in any way as I know how topsy turvy this process can be to mind and soul.

Yeah a multi-post...
Lastly: There has been some discussion and contemplation that Retigabine could be no better than a placebo of some kind, or as good as a bunch of other drugs that affect T like a good hit of Benzos, etc. This is a valid argument! Indeed it will not be clearly answered until and if, a more standardized trail is adopted with the accepted (or at least minimally accepted) protocols. At a pinch that would mean a much bigger N = sample size/trialees and a placebo component, etc. Such a trial is an honourable goal and one that is being worked on as I write this. It may or may not come about, as inevitably elements of bureaucracy and plain organization can be 'tedious'.

However, what we are doing here is informal, fast, unhindered (except for drug access), and ultimately subjective. That said, I for one cannot believe that everyone who has taken this drug, or is taking this drug, is just so out to lunch they cannot tell if their Tinnitus is being 'affected' with any degree of objectivity. Hell most everyone has tried some other drug to no avail yet wanted that drug to have an effect, but it did not!
Thus, given the integrity I read and feel from our trialees in general, I cannot accept that these high numbers of Retigabine effects on tinnitus are placebo, make believe, wishful thinking or bullshit. Yes the drug may have "mood effects", but in my long experience mood helped moderate my response to tinnitus, it did not make it drop in volume (I could still hear it in same 'objective circumstances') to the degree we are reading about here.
Yes side effects may be so onerous the drug is dropped, but even then, before that, "effects" on T have been noted.

As I have stated before. To me, this gives a lot of credence to the "Kv Channels" playing a very, very significant role in the "mechanical mechanism" of tinnitus. Yeah, this may be a nasty drug and have too much of a "shotgun" approach, but crikey...are there any other modalities out there that have given these kinds of "effect numbers" that change the actual Tinnitus itself, rather than the tolerance of it???
If so, please tell me.

Best, Zimichael

 

[locoyeti]

All, I now have a prescription for 100mg TID (300mg total) of Potiga. It's just a one month, no refills, and I'm scheduled to see the doctor again in three weeks. Not sure if he just wants to check efficacy, side effects, or do some tests.

@locoyeti, @cdog, anybody else with experience, any advice? 300mg is certainly enough to hear a difference from some people's experience, but I'm slightly concerned that being on a low dosage too long will hurt my chance to make a homeostatic change.

I'm also still looking into the $$$ side of things, especially as I'm between jobs at the moment.

when you meet him again will you be able to get more? the homeostatic change issue is not to big a deal such that you shouldn't try this. i would wait one week and with the extra pills try and push it to (600 mg/day), and then come back to 300mg/day just to see how you feel. honestly though u should do everything you can to get a higher dosage from that doctor.

 

[cdog]

All, I now have a prescription for 100mg TID (300mg total) of Potiga. It's just a one month, no refills, and I'm scheduled to see the doctor again in three weeks. Not sure if he just wants to check efficacy, side effects, or do some tests.

@locoyeti, @cdog, anybody else with experience, any advice? 300mg is certainly enough to hear a difference from some people's experience, but I'm slightly concerned that being on a low dosage too long will hurt my chance to make a homeostatic change.

I'm also still looking into the $$$ side of things, especially as I'm between jobs at the moment.

As to the $$$ side of things, have you looked at the online Canadian pharmacies?

 

[rtwombly]

@locoyeti, thanks for the advice. My next appointment is Dec 16 so I'll see how long it takes to get my supply.
@cdog I've looked and may look again. The one thing that troubles me is that there are two very different price lists on the Canadian pharmacies, and I'm not sure if that relates to quality. This was also a digital prescription, so I'd have to contact the office to get it forwarded and I think the doctor may have specified 50mg pills.

I'm happy with the doc, he's just being cautious. Didn't really have a problem giving me the prescription and knew some of the history, people using Tegetrol and such.

 

[locoyeti]

@locoyeti, thanks for the advice. My next appointment is Dec 16 so I'll see how long it takes to get my supply.
@cdog I've looked and may look again. The one thing that troubles me is that there are two very different price lists on the Canadian pharmacies, and I'm not sure if that relates to quality. This was also a digital prescription, so I'd have to contact the office to get it forwarded and I think the doctor may have specified 50mg pills.

I'm happy with the doc, he's just being cautious. Didn't really have a problem giving me the prescription and knew some of the history, people using Tegetrol and such.

i would appreciate a post (or possibly a new thread) on all the information regarding online pharmacies and the various differences in retigabine access. which ones have good deals.. etc.

i am thinking of getting some from online and the only two i've heard of are blueskydrugs and canadapharmacyonline. are there any others that are better, or different?

 

[locoyeti]

@locoyeti ...Continued good news on your front. Excellent! Thank you too for the detailed updates.
One point though. I was wondering about the "Pink Noise" blasting away...Ummmmmmmm, in relation to the H. I would find that intolerable at the best of times. Have you considered turning it off in your current trial situation and "results" to date? If I may encourage that even just temporarily, I would like to know your response...you know why. And sorry to drop a "guinea pig" on you, but I suspect you share my "scientific" bent with all this. H. is a real bastard and the Retig. action in relation to it really gets my antennae twitching!

@Zimichael i shut it off from time to time, or turn it down a bit and it is still silent. i also go out occasionally without any pink noise so i am not around it all the time. whenever i have had h (before retigabine) it hasn't been a problem (though i have had to turn it down just a handful of times - must of the time the h is small enough to not be a problem - it is hearing random high frequencies, from a movie, say, that really aggravates in those times). the reason i have been putting the pink noise on a bit more loudly that usual is that i want to test a theory. i just want, for the next month or so, to be in a controlled environment, without anything that could excite my tinnitus (caffeine, long trips, loud environments). i would say my t is only mildly reactive, but still i want to mostly just have pink noise blasting away while i think nothing of all about my t. i really think the key to @Mpt 's success was that the t got so low that his brain was able to do the rest of the work of filing it away. my t is pretty damn low right now and i feel that being conscious, even a little bit, of what remains, may hinder in some ways, my brains ability to file the rest away. i don't know, just a thought. i am able to put pink noise on at a medium volume and it completely masks the t (didn't do that before, i was always able to hear it at least a little bit, and it would be 'in my ears' instead of 'in my head'). i will take off all masking once i get something like 2 straight weeks of silence or very low t. to answer your request though, my experience with retigabine has been that it has had a positive effect on my h. (give it another shot sir...... )

also, i think the talk about this being placebo is hooey. it would be like saying an hallucinatory trip from lsd is placebo.

this morning i delayed my dosage because i had a conference call and i didnt want to sound like an idiot. when i took my 300mg dose on empty stomach after the call it had been 12 hours since my last dose. thing hit me super hard, typing was super impossible, and i felt like i was tripping, this after something like 30 minutes. what's interesting is that i decided to eat something, and as i ate the hardcore effects went down quite a bit. i may experiment a bit more with dosing on an empty stomach, but will probably not do that with so many hours between the last dosage. at some point though i will start taking the morning dose with food, as it seems to allow me to work a bit better.

 

[NGC891]

I'm happy with the doc, he's just being cautious. Didn't really have a problem giving me the prescription and knew some of the history, people using Tegetrol and such.

@rtwombly, @locoyeti,

I started as @rtwombly because my neurologist with little experience on the Trobalt preferred to give me a lower dose to start (150 the first two weeks and 300mg / day the next week). This allows him to verify that you tolerate the drug.
I was also worried about not being able to reach the minimum dosage mentioned by users on TT.
I met again my neurologist recently. He gave me a prescription that will allow me to continue to increase my dosage as recommendation of GSK ie 150mg per day and more each week.
I will stop increasing the dosage depending on efficiency.
I spoke with my neurologist homeostatic phenomena. He does not think it's essential. However, for the body, a progressive increasing allows the body to adapt and probably reduces the intensity of side effects.
@rtwombly : If you bear much medication, your doctor probably will agree to increase the dosage. Don't worry about your trial.

 

[rtwombly]

@NGC891 thanks for your encouragement. Certainly if you are getting some results after this many years, I have good reason to be hopeful.

Well, my friends, in a turn of events I can only attribute to God, my pharmacist informed me that I am covered for Potiga. This first bottle is a bit expensive as I have to pay off my drug deductible, but it's still about what I'd pay to the Canadian pharmacies, and I get it tomorrow instead of weeks from now. Not only that, but the doctor actually set me up for 5 refills (50mg x 180 pills), so I can keep going until the 16th and need only discuss increasing the strength to save money.

My plan for tomorrow is to get my eyes tested. After Dr Nagler's explanation of how bladder hesitancy can lead to kidney problems, I'm less concerned with getting a baseline albumen test. I will discuss having it done soon, though.

 

[locoyeti]

@NGC891 thanks for your encouragement. Certainly if you are getting some results after this many years, I have good reason to be hopeful.

Well, my friends, in a turn of events I can only attribute to God, my pharmacist informed me that I am covered for Potiga. This first bottle is a bit expensive as I have to pay off my drug deductible, but it's still about what I'd pay to the Canadian pharmacies, and I get it tomorrow instead of weeks from now. Not only that, but the doctor actually set me up for 5 refills (50mg x 180 pills), so I can keep going until the 16th and need only discuss increasing the strength to save money.

My plan for tomorrow is to get my eyes tested. After Dr Nagler's explanation of how bladder hesitancy can lead to kidney problems, I'm less concerned with getting a baseline albumen test. I will discuss having it done soon, though.

get an OCT scan of your macula from an opthamologist, if you can. i recommend this for every trailee.

 

[dan]

@locoyeti , your tinnitus was a 3 out of 10 prior to Trobalt.
So your T went from mild to silent ?

 

[locoyeti]

@locoyeti , your tinnitus was a 3 out of 10 prior to Trobalt.
So your T went from mild to silent ?

'near silent'. quite a ways to go to silence though. the volume is much reduced, to the point that it is not really intrusive. the gap between 'near silent' to silence may be yawning... i still hear random tinnitus sounds but they are so low in volume, i feel as though one day i may wake up and they will all go away, or they will just get lower and lower as i continue the treatment. it is also possible that some low level of t will just always be there. time will tell.

 

[Juan Carlos]

Juan Carlos, I suspect you issue will calm down as you are still peeing, which is the main thing. Take your time, sit on toilet, relax pelvic area, and just 'squirt' and wait and 'squirt' (dribble if needs be) some more. Repeat until more or less empty. The muscles will hopefully release properly in due course as you get used to this, and indeed go to pee much more regularly than normal. Does not matter if just a small amount of pee. Just doing it keeps the bladder "aware" of what it is meant to do. [If you want more details you can send a picture to us all and we can comment on your 'position' and 'apparent degree of relaxation' - like smiling and so on... ]

yeah, from yesterday im not -so- worried, thing came clearer, so without understading, here is what happens:

1. Certainly, im pretty sure that now I pee less, why? no idea. I dont think its renal disfunction as this is happening from the first day on Trobalt, while my blood analisys are ok no worries
   
2. Urinary retention, yes, i have some but is not a problem while i can pee. The thing is that before i was able to pee with "half full" bladder, and now I cannot do that un less I wait lot of time and concentration, but with full bladder, there is no problem to pee with 'full bladder'.
   
3. the big wonder i had before was that i was not sure if I was making less urine or because of relaxed bladder, i didn't feel the 'need to pee', Now im more sure it's the first: im making less urine. So if before Trobalt i used to pee every 5 hours (yes big bladder), or 8h at night sleep, now im doing everey 7. well no big deal. I tried to follow the advice of zimichael of "timing pee" for example every 4h but I cannot do that, if i dont feel the need to pee I cannot do it, even sitting or whatever, I really tried and waited for it (maybe before i could but not with trobalt). So i can only wait for the feeling that "i have to pee", wich can be 6-8h after last time, and then no problem. BTW still didn't notice change in color

I hope this is my last post about yellow waterfalls. Sorry zimichael, not taking a pic in toilet
Looking forward to increase dose this friday

 

[RaZaH]

Any other effects then peeing problems ? Effects on T