Member- Jul 21, 2013
- 842
- Tinnitus Since
- 01/2013
- Cause of Tinnitus
- Acoustic trauma from headphones
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
- Apr 28, 2014
- 322
- Tinnitus Since
- 04/2014
- Cause of Tinnitus
- ototoxicity/infection
hi
if possible can ask ur neruo, if he knows which countries are selling Retigabine ? i am unable to track down if Retigabine is sold in india or not. Trying to get hold of my doctor friends so far no luck, I have asked few of my friends to ask around but no luck yet.
coming to ur point, ur idea may or may not work, unless u knw abt the full mechanism of T and Retigabine.
thanks
Edit: i can not find any trace of this medicine in any sites in india..
if possible can ask ur neruo, if he knows which countries are selling Retigabine ? i am unable to track down if Retigabine is sold in india or not. Trying to get hold of my doctor friends so far no luck, I have asked few of my friends to ask around but no luck yet.
coming to ur point, ur idea may or may not work, unless u knw abt the full mechanism of T and Retigabine.
thanks
Edit: i can not find any trace of this medicine in any sites in india..
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
Yes there have been a ton. I don't know how many times people here have reported lower T on benzos. A lot!
Woow RaZaH goes from 8/10 to a 1/10 with just a 100mg pill
I wonder if any Benzo out there has this effect as Telis says
I wonder if any Benzo out there has this effect as Telis says
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
Buddy... He was at a 1 out of 10 last week with no drug treatment at all. But sure this week it's the retigabine, let's go with that because thats what you want to believe. Forget the facts
By the way, tired of discussions of if its a real cure or not, wich are leading to nowhere with a so small N sample I gonna tell you my little experience of yesterday/today
I dont want to generalize so i talk about by case, wich was caused very probably by stress (not even sure of that)
Yesterday I had a quite bad monday, lot of work(9h), bad weather, noisy gym tired etc etc. So as expected, when I got home i realized by T was quite worse, say on baseline or near there even I took my 200mg pill. So convinced I needed a rest I went to sleep earlier than usually, so I slept almost 9h straight. (just woke up at 4am to take my pill and 'empy my bladder')
So I woke up this morning (always remembering my last very vivid dream) and yeah I was there with T=near silence, i wanted to stay there in my silent room for more time but i would be late to work . My mornings always have been quieter than nights but i dont remember o so quiet one like today.
I'm very convinced a good rest and stressless life is super important, at least on the ones wich cause was stress, and probably for everybody. I will try from today to sleep 9h more often
I dont want to generalize so i talk about by case, wich was caused very probably by stress (not even sure of that)
Yesterday I had a quite bad monday, lot of work(9h), bad weather, noisy gym tired etc etc. So as expected, when I got home i realized by T was quite worse, say on baseline or near there even I took my 200mg pill. So convinced I needed a rest I went to sleep earlier than usually, so I slept almost 9h straight. (just woke up at 4am to take my pill and 'empy my bladder')
So I woke up this morning (always remembering my last very vivid dream) and yeah I was there with T=near silence, i wanted to stay there in my silent room for more time but i would be late to work . My mornings always have been quieter than nights but i dont remember o so quiet one like today.
I'm very convinced a good rest and stressless life is super important, at least on the ones wich cause was stress, and probably for everybody. I will try from today to sleep 9h more often
I feel that we need to be super cautious here , there are so many factors in play.
Yes , I do feel that this definitely works but it is so easy to be wrong, we should all know this ! At least the ones amongst us that have dealt with this for years and are past thinking that the banana you ate yesterday had a profound effect on your T. So..let's chill and see what happens .
And as Telis says , I did have a super low day last week.
But @Telis ...
In my case the biggest clue for efficiancy is that about an hour after taking the pill I get almost complete silence.
This seems to wear off a bit in two hours or so,now that is bound to be connected in my opinion.
Again...I might get the same effect from a benzo .
All I can do at the moment is be honest about my experience.
Also if this is only temporary ,as valuable it is to get a peek into your old self it comes with a price.
In my opinion if this does not have the potential to cure anyone for good , which I seriously doubt then the value is constrained to getting this temporary relief as well as being a clue for further research.
In any event , we have yet to see anyone else "cured" using this stuff and for me that is the BIG QUESTION !
Yes , I do feel that this definitely works but it is so easy to be wrong, we should all know this ! At least the ones amongst us that have dealt with this for years and are past thinking that the banana you ate yesterday had a profound effect on your T. So..let's chill and see what happens .
And as Telis says , I did have a super low day last week.
But @Telis ...
In my case the biggest clue for efficiancy is that about an hour after taking the pill I get almost complete silence.
This seems to wear off a bit in two hours or so,now that is bound to be connected in my opinion.
Again...I might get the same effect from a benzo .
All I can do at the moment is be honest about my experience.
Also if this is only temporary ,as valuable it is to get a peek into your old self it comes with a price.
In my opinion if this does not have the potential to cure anyone for good , which I seriously doubt then the value is constrained to getting this temporary relief as well as being a clue for further research.
In any event , we have yet to see anyone else "cured" using this stuff and for me that is the BIG QUESTION !
I think that I should not do progress reports or comment too much on this until I have more experience.
Taking a break from TT for a while now.
Taking a break from TT for a while now.
- Oct 22, 2014
- 240
- 40
- Tinnitus Since
- 10/2014
- Cause of Tinnitus
- Acoustic trauma (club drumming)
Does anyone else get a kind of numbness in their ear after taking a dose? It's almost like I can 'feel' my deafness in my right ear, like an physical absence of input.
It's not quite the fullness you get after a threshold shift.
It's not quite the fullness you get after a threshold shift.
I will ask him.
Here I go...off to the doctors office. Have a wonderful day ....Happy Thoughts!!!!!!!!!! 
@Juan Carlos , i don't know if this is posting before but maybe you are not lost in thinking about Retigabine and first months of treatment.
http://www.hiddenhearing.co.uk/hearing-health/220/how-epilepsy-drugs-could-prevent-tinnitus/
http://www.hiddenhearing.co.uk/hearing-health/220/how-epilepsy-drugs-could-prevent-tinnitus/
- Jul 21, 2013
- 842
- Tinnitus Since
- 01/2013
- Cause of Tinnitus
- Acoustic trauma from headphones
They suspect it could prevent it. But as far as they know, it could work on long term users... hence Autifony doing what they're doing.
That's interesting, I thought of using RTG for preventing but I think it hasnt been discussed here. if some day i get cured, probably I will use it as prevention in some scepcional cases.
There is mentioned "coma" as a side effect. where the hell they got this?? any reliable source?
They talk as a "cure" for just after loud sound exposure. What if not is that a super short case of Tinnitus being cured by RTG? I still think -the earlier to attack T, the more chances get it rid- How many people had tinnitus for few hours after a concert? how many of them got spontaneously cured and how many didn't ?
@Champ Yes i Hope...
Using Retigabine to help prevent Tinnitus from developing could be a welcome breakthrough as prevention is always better than cure. Because a patient would only need a short course of treatment the risks associated with long-term use will be cancelled out. -
@Juan Carlos .. i have 30 day with tinnitus, i am (two weeks) with Microser 16mg (Betahistina diclorhidrato).
I continue two weeks more with that, and then evaluate something else like wait for Autifony or take Retigabine.
Using Retigabine to help prevent Tinnitus from developing could be a welcome breakthrough as prevention is always better than cure. Because a patient would only need a short course of treatment the risks associated with long-term use will be cancelled out. -
@Juan Carlos .. i have 30 day with tinnitus, i am (two weeks) with Microser 16mg (Betahistina diclorhidrato).
I continue two weeks more with that, and then evaluate something else like wait for Autifony or take Retigabine.
if i were you, i would try RTG right now, this is my opinion: the earlier the better.
doing the appropieate checkings of eyes and kidneys and appropiate taper up
SoulStation
Member
SteveToHeal
Member
Hey @Danny Boy - what's the latest from you re RTG? You said you feel it has basically saved your life. Are you still feeling positive relief on RTG? I'm at the point of taking it just to get a rest. All coping mechanisms to sleep, pillow speaker, valerian herb, benzos(azalopram), urbanol (anti-anxiety) even quetiapine (anti-psychotic) but still waking up during teh night, can't get back to sleep. T right up there today at a 9 or 10/10. About to throw in the towel from desperation. Can't control it day to day. Life off the rails from t. Any ideas from anyone on a drug to solidly knock you out at night just to get t down the next day? I don't care if i'm in a stupor the next day. Just anything to bring donw this head noise (next day) plus in both ears. Seeing a doctor on Friday to ask him to prescribe something to cope. But any suggestions welcome. Is Zolpedem any good? Also going t ask him about RTG.
SoulStation
Member
Try flexeril. 20 mg. You will pass out so hard. It also has had a REAL study done on it showing it was effective in 85% of T patients.
SteveToHeal
Member
Thanks SoulStation. Seeing GP on Friday. Need something desperately. Can't sleep and then loud T all day and night = "end of rope". So thanks. Good luck all RTG trialees.
- Oct 22, 2014
- 240
- 40
- Tinnitus Since
- 10/2014
- Cause of Tinnitus
- Acoustic trauma (club drumming)
Mirtazapine, Zopiclone. Hydroxyzine. Not checked ototoxicity on them but they knock me out when I'm having a T related panic attack.
SoulStation
Member
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.
I agree. Ritigabine may have a faster effect on T but at what expense with those side effects. Benzo's make my T less and make me feel sane. so does pain med OxyContin. Is it my life long choise? I'm trying not to. But Ritgabine seems like a one way street as well. Unless someone says their T disappeard after stopping use isn't it the same sinking boat? How long can you sustain that med?
undecided
Member
Zolpidem is only good to get you to sleep, it does not maintain sleep (you'll wake up after a couple of hours).
There is a sustained release version of the pill that might help you stay asleep longer.
If you feel adventurous, you might try to potentiate the Zolpidem using a small amount of xanax (say 0.125mg). Some might say that it is dangerous to mix a benzo (such as xanax) and Z drugs (such as zolpidem) but I've done it and I found it totally harmless. YMMV.
undecided
Member
This drug is a friggin' nuke. I've said it before and now I'm completely convinced. Thanks for the warning.
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
SS can you please say what your BUN levels were on previous pre-Potiga tests?
Not trying to be a smart-arse, just would be good to know the degree of change.
Thanks, Zimichael
Trobalt certainly has a lot of side effects that are probably insufficiently highlighted by the laboratory .... It's still surprising despite the very positive results of clinical trials before.
Visual examination is a necessity but it appears that a urinalysis also necessary. Is it done other things to watch ??? How is it that these points are not specified by the laboratory in the user guide?
In my case, after about 16 years of tinnitus... the day that I experienced today let me see a glimmer of hope ....
Yesterday evening Yoga session with my wife. I put my custom earplugs because the present time I was embarrassed by the voice of the teacher. Last night was the same. With my cap, I could hear my tinnitus. It was uncomfortable but with such tinnitus reactive than mine, it allows me to avoid ending up with the noise of a pressure cooker at the exit ...
This morning, waking at 9am. I get up from my bed after a good night. Heck I realize that I have two hours late in taking my Trobalt! I'm in my living room turn on my radio to cover my tinnitus. I turn right and then left. 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 take my fasting treatment before going to the pharmacy for my dose of Trobalt! As for four months, I take precautionary my noise canceling headphones because I live in a big city with lots of noise.
I eat with my parents. We discuss a little. I am pleasantly surprised as usual, I have a conversation, my tinnitus explode in intensity. Nothing today!
Tonight preparing the kitchen, I hear a brief spike tinnitus that tries to invade my right ear. And then, what stupor, it's like an unknown mute person trying to shout into your ear. You expect a loud noise but almost nothing! The peak is returned quickly without having managed to emerge! I have been amazed!
I do not know if these effects are sustainable (hopefully stronger) but this is the first time that treating me this purpose!
This day was exeptional?
To be continued ...
Visual examination is a necessity but it appears that a urinalysis also necessary. Is it done other things to watch ??? How is it that these points are not specified by the laboratory in the user guide?
In my case, after about 16 years of tinnitus... the day that I experienced today let me see a glimmer of hope ....
Yesterday evening Yoga session with my wife. I put my custom earplugs because the present time I was embarrassed by the voice of the teacher. Last night was the same. With my cap, I could hear my tinnitus. It was uncomfortable but with such tinnitus reactive than mine, it allows me to avoid ending up with the noise of a pressure cooker at the exit ...
This morning, waking at 9am. I get up from my bed after a good night. Heck I realize that I have two hours late in taking my Trobalt! I'm in my living room turn on my radio to cover my tinnitus. I turn right and then left. 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 take my fasting treatment before going to the pharmacy for my dose of Trobalt! As for four months, I take precautionary my noise canceling headphones because I live in a big city with lots of noise.
I eat with my parents. We discuss a little. I am pleasantly surprised as usual, I have a conversation, my tinnitus explode in intensity. Nothing today!
Tonight preparing the kitchen, I hear a brief spike tinnitus that tries to invade my right ear. And then, what stupor, it's like an unknown mute person trying to shout into your ear. You expect a loud noise but almost nothing! The peak is returned quickly without having managed to emerge! I have been amazed!
I do not know if these effects are sustainable (hopefully stronger) but this is the first time that treating me this purpose!
This day was exeptional?
To be continued ...
SoulStation
Member
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.
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