MemberExcellent news what was your maximum one dose intake and your maximum daily dosage?
Retigabine (Trobalt, Potiga) — General Discussion
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Excellent news what was your maximum one dose intake and your maximum daily dosage?
- May 7, 2015
- 1,050
- Tinnitus Since
- 29.09/2014
- Cause of Tinnitus
- Acoustic trauma using headphones
I think one problem is one cant get hold on sufficient amount to do it proper. The mentality is one wants to try it for a short time spell. It worked for Elvis!(Presley)
I hope to get some boxes of Trobalt from Turkey, in the Netherlands I'm sure doctors won't give this to me but I will try to talk with a neurologist. Thanks for the tip of checking QT intervals during use. But my first action for now will be to get the infusion therapy with prednisolon or whatever... If that is no succes then I will go for Trobalt for sure!
Yes it's very reactive even when someone is talking loud it directly pushes my T to the highest point. I'm trying to avoid crowded places and noises but I have a little child and she's also crying alot each day and night. Sounds are indeed a bit more louder on the left ear it's like there is no filtering anymore. I have to say the H was very bad first 4 weeks after I developed T but i feel it's 80% better now. I'm happy the H is almost gone but the T is always there.
3*400 made the difference ... it shows up after a while ... you have to do it for atleast 2 weeks and than you start seeing the potential ... now even 200 has the effect of 400 ... i`m tapering down and woke up late, havn`t had any trobalt in me for 13 hours now ... woke up to very silent hissing and faint ring .. very faint .. it works I have to admit cheerfully
.. although i`m still being cautious in saying it.
3*400 made the difference ... it shows up after a while ... you have to do it for atleast 2 weeks and than you start seeing the potential ... now even 200 has the effect of 400 ... i`m tapering down and woke up late, havn`t had any trobalt in me for 13 hours now ... woke up to very silent hissing and faint ring .. very faint .. it works I have to admit cheerfully
I hope you´re right. Im on my third 4o0mg pill and short term effect was only some sedation, nothing for my T. its 10/10. I hope something will (start to) change after 2 weeks
You probably mentioned it somewhere (sorry for asking) but what kind of T do you have (did have)? how many sounds and tonal, high frequency?? is (was) it deadly lethal like mine? was it 10/10 before? As DannyBoy said, mostly people with suicidal grade T should take Trobalt...I still think trobalt will only work for mild to severe Tonal T....(like preslys´)..but i hope im wrong
Mine never was a 10/10 more than 5 days. I have experienced what i call 10/10 ... several times but only short periods.
In general I would rate mine a 7-6. Strong enough to ruin and take hold of your life. I rated mine a 6 at ENT and she said, oh it`s not that bad than? .. well if silence is 0 and 1 is a sound, 6 is pretty invasive and depressing. I am taking 5htp for the last 2 months. If I`m out for a day, before Trobalt, and come home to silence, I would have a low big drone, a hiss and a tone at 13.000htz. very annoying. Morning time hiss and loud tonal at 13.000 ... out in city Tonal at 13.000 ... in any situation. I am taking 5htp for the last 2 months. I think it helps to. I would say that this morning it is a 1-2. The fear of it coming back holds my consciousness in a grip and that`s why I focus on the 2 which highlights the fact the is still a tonal ring although it is very very low I have to admit, and a low hum, but I consider that just blood and something everyone has. I woke up a while ago and when I wake up to silent ring it usually becomes louder after 5 minuts. but these mornings it just stays low ... I saw the most difference when I suddenly started tapering off few days ago.
So my experience now is like I hear something but I don`t really can say if it is my computer and fridge and the electricity in the air or my own mind creating sounds ... that`s pretty close to silence i would say ...
best of luck snow86!! ... don`t worry about side effects ... for short time it is nothing ... just take care when you are under the inluence .. I got reall really high from it ... it has NDMA maybe in it .. .some amphetamine atleast ... your mind won`t work the same, you will have trouble communicating and makeing sense out of things ... my friends would really see the difference in my behaviour. not really there, bit wishy woshy, kind of funny droopy ... and care free
Mine never was a 10/10 more than 5 days. I have experienced what i call 10/10 ... several times but only short periods.
In general I would rate mine a 7-6. Strong enough to ruin and take hold of your life. I rated mine a 6 at ENT and she said, oh it`s not that bad than? .. well if silence is 0 and 1 is a sound, 6 is pretty invasive and depressing. I am taking 5htp for the last 2 months. If I`m out for a day, before Trobalt, and come home to silence, I would have a low big drone, a hiss and a tone at 13.000htz. very annoying. Morning time hiss and loud tonal at 13.000 ... out in city Tonal at 13.000 ... in any situation. I am taking 5htp for the last 2 months. I think it helps to. I would say that this morning it is a 1-2. The fear of it coming back holds my consciousness in a grip and that`s why I focus on the 2 which highlights the fact the is still a tonal ring although it is very very low I have to admit, and a low hum, but I consider that just blood and something everyone has. I woke up a while ago and when I wake up to silent ring it usually becomes louder after 5 minuts. but these mornings it just stays low ... I saw the most difference when I suddenly started tapering off few days ago.
So my experience now is like I hear something but I don`t really can say if it is my computer and fridge and the electricity in the air or my own mind creating sounds ... that`s pretty close to silence i would say ...
best of luck snow86!! ... don`t worry about side effects ... for short time it is nothing ... just take care when you are under the inluence .. I got reall really high from it ... it has NDMA maybe in it .. .some amphetamine atleast ... your mind won`t work the same, you will have trouble communicating and makeing sense out of things ... my friends would really see the difference in my behaviour. not really there, bit wishy woshy, kind of funny droopy ... and care free
thank you!
Yesterday felt like a setback ... evening time strong tonal T appeared and was there for most of the evening ... But i smoked some ganja so this must have done something of course ... but this morning I awoke to only hissing ... no tonal t ... just hissing ... thats a great step forward!! thanks to trobalt.
yeah man...yesterday was horrible. Had like 15/10 T in the evening. Even a 400mg pill wouldnt make it better for a short period and I had 2 additional sounds., that made it like 9 different sounds..I don´t understand my brain.
You will have to make a "holiday" trip to southern spain. And theres practically no trobalt in other countries and almost no doctor will prescribe it to you.
That is quite baffling...I really hope it works in the coming weeks...You need relief.
Yes you can apparently........but not in every pharmacy - you need to go from one to the other to find one willing to do it...........that is all I know...hope that helps
Hi fellas, Since my trip to Russia for 17 days i got a very high habituation. in the last months i almost did not think in T. i had 2 months of absolutely normal life
I am still taking Keppra for the H, and sometimes if im stressed or been exposed to loud sound i take Trobalt like 200mg once, that happens like once every 2 weeks or so, even i can take it just for joy if im alone
Part of the habituation is being not login on this website, i connected to answer a private message for wich i received an email.
If you are wondering about the objetive level sound of my T (wich now is not as important for me as it was before), i would say is not worse, maybe is lower or maybe is the same, but for sure i got very habituated, well it took me 1.5 years to habituate, some people needs less time some people more. I am still caring of my ears so staying away from loud sounds and using music earplugs if i go to some pub or something. I focus now in other things like how to earn money or enjoy the summer in mallorca and meet cool people, play sports, go to beach, swim, play voley, host people at home etc etc...
wish u all the best
can someone make me a brief resume of the news on the last 2 months?? more experience from autifony? new medicines?
That's awesome @Juan Carlos I'm glad you're doing so well, thanks for coming back to update us. Be well my friend.
My experience with Trobalt after 4 days of 3x400
Nothing good. I was high for 1-2 hours sometimes and the T was more bearable for 20-30 minutes then it came back strong and got worse till evening. That means more deep sounds arise and get louder, mutate in frequency (thats usual in my case, always gets worse after waking up and over the day),
the last 2 days were beyond imaginable. It seems that 15/10 days are my new standard and 1 good "mild" day is 10/10. This is so fucked up. Yesterday my T was about 9 sounds (!!!) blasting like in full concert volume. I also got a new tonal sound two days ago, which is sitll there. A normal person would just bashed his head against the wall .
I snacked 400mg while this was happening and nothing happened, I wasnt even high. I dont know how long I can live like this and make it even to some weeks with 3x400mg.
I dont know, maybe Trobalt makes my T worse, maybe it is the lowered dose of my antidepressant, same time started to lower mirtazapin as started trobalt.
I still suspect that Trobalt will probably help if you have a 3/4 T and a severe reaction about it. Then it will get lower and habituation will take care of the rest.
Maybe something will happen after some weeks, If I can make it,
Fu**
Right now im a bit high (excuse my writing mistakes), because I took 400mg on empty stomach. But the other 2 times I take it in the day, im not high. Good thing is, I have almost 0 side effects
If someone asks himself, how the hell do I sleep with this. Thats curious, when im lying in bed, ready for sleep, my brain somehow starts to lower all T sounds when im close to the feeling that im falling asleep. Maybe the Mirtazapin helps. I dont know, but I can sleep 9-10 hours straight.
But @Telis has also diabolical Tinnitus and he manages to sleep...so...dont know.
hope you guys have more luck than me
@Geo
@NiNyu
Nothing good. I was high for 1-2 hours sometimes and the T was more bearable for 20-30 minutes then it came back strong and got worse till evening. That means more deep sounds arise and get louder, mutate in frequency (thats usual in my case, always gets worse after waking up and over the day),
the last 2 days were beyond imaginable. It seems that 15/10 days are my new standard and 1 good "mild" day is 10/10. This is so fucked up. Yesterday my T was about 9 sounds (!!!) blasting like in full concert volume. I also got a new tonal sound two days ago, which is sitll there. A normal person would just bashed his head against the wall .
I snacked 400mg while this was happening and nothing happened, I wasnt even high. I dont know how long I can live like this and make it even to some weeks with 3x400mg.
I dont know, maybe Trobalt makes my T worse, maybe it is the lowered dose of my antidepressant, same time started to lower mirtazapin as started trobalt.
I still suspect that Trobalt will probably help if you have a 3/4 T and a severe reaction about it. Then it will get lower and habituation will take care of the rest.
Maybe something will happen after some weeks, If I can make it,
Fu**
Right now im a bit high (excuse my writing mistakes), because I took 400mg on empty stomach. But the other 2 times I take it in the day, im not high. Good thing is, I have almost 0 side effects
If someone asks himself, how the hell do I sleep with this. Thats curious, when im lying in bed, ready for sleep, my brain somehow starts to lower all T sounds when im close to the feeling that im falling asleep. Maybe the Mirtazapin helps. I dont know, but I can sleep 9-10 hours straight.
But @Telis has also diabolical Tinnitus and he manages to sleep...so...dont know.
hope you guys have more luck than me
@Geo
@NiNyu
Maybe it has something to do with how long you've had tinnitus? Like with me, I started trobalt after the 3rd month or 4th month of getting tinnitus. You've had tinnitus a lot longer than me, sadly, so maybe it has something to do with the time you've had tinnitus? I honestly have no idea. I hope it does work out for you snow. Good luck mate!
- May 7, 2015
- 1,050
- Tinnitus Since
- 29.09/2014
- Cause of Tinnitus
- Acoustic trauma using headphones
I am sorry Trobalt doesnt seem to help you Snow86.
What you say about your T., when in bed, the minutes before you sleep, I feel exactly the same way.
I take 15-30mg Remeron -S also, and after about 30 min my T is definetely easier to cope with. Its like it loses its intrusiveness and feels like its attenuated a bit.
I think it somehow must calm down the neuronical brain activity a bit.
- Nov 6, 2014
- 520
- 41
- Tinnitus Since
- 10/2014, worsened 5/2024
- Cause of Tinnitus
- Ear infection / Long-term Noise ; Acoustic Trauma
To @snow86 @nills @preslys and anybody else currently taking Retigabine:
PLEASE fill out the user experience forms:
https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047/
It should only take you a couple minutes and is extremely valuable for research purposes.
Thank you!
PLEASE fill out the user experience forms:
https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047/
It should only take you a couple minutes and is extremely valuable for research purposes.
Thank you!
I posted this link previously some time ago, but they now have more information on their site.
Someone else looking at doing a improved version of Trobalt
http://knoppbio.com/research/show.php?2
Someone else looking at doing a improved version of Trobalt
http://knoppbio.com/research/show.php?2
I get the same thing, that the T will lower as I get closer to sleep, especially if I'm envisioning some type of interesting scene in my mind, and particularly if I'm imagining participation in the scene. If I so much as give a fleeting thought to the T, though, it comes back as strong as it was and I have to start all over again.
Is there a sleep clinic nearby where you live? I'm thinking maybe you could have your brain waves monitored, correlate that with the dropping of T volume, and then perhaps get trained in biofeedback to control your brain waves when you desperately need relief. The trick I suppose is to not fall asleep when you need to stay awake, and yet still get those brain waves in sync with lowering T volume.
I used to be able to fall asleep within 10 minutes of going to bed. Now I have to work at it.
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
I don't think we have a tenth of the data necessary to make this statement. The way to get the data is to throw things at the wall and see what sticks. We already have two different KV3.1 drugs in the works, what's wrong with someone trying a KV7 one? If Autifony is right then they are only wasting their own time; on the other hand, if Autifony is partially wrong about how all this works, then we'll all benefit from other avenues of exploration.
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
There are a handful of published studies trying to do exactly this with neurofeedback, some with good results. I have looked in to this but it's very expensive.
It's not just when I'm falling asleep that I notice this effect -- if I am distracted from my T and then start thinking about it, when my mind "looks" for it, that generally evokes a distinct, loud tone burst on the left side. So, there is clear interaction between my T signal and my conscious mind. This may be why some people report volume changes from meditative practice.
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