Retigabine (Trobalt, Potiga) — General Discussion

[Danny Boy]

Lastly, I jumped the gun and said I was cured. I guess I was just excited. I won't know until a few weeks, but even if I'm not I can't do anything about it. I'm used to masking and I've adapted to life with tinnitus and as I said, it's never returned to baseline. Either way, if people want me to stay, I will. If you want me to go I will. I don't want to be like Dr. Nagler hated by many. I'm just a normal guy, not special in any way. Really, I post a lot and come on here way too much, because I just like being apart of the community.

 

[papu]

I am happy for you to danny don't feel that you have to explain to anyone here, you are one of our most active members and even after feeling cured i know that you will keep posting and trying to help others (not like for example mpt, felt better and was never seen again or at least i have not seen anything else from him). I really appreciate all of your crazy experimentation and even your copy-paste (saves me the time looking for the info).

 

[grate_biff]

Lastly, I jumped the gun and said I was cured. I guess I was just excited. I won't know until a few weeks, but even if I'm not I can't do anything about it. I'm used to masking and I've adapted to life with tinnitus and as I said, it's never returned to baseline. Either way, if people want me to stay, I will. If you want me to go I will. I don't want to be like Dr. Nagler hated by many. I'm just a normal guy, not special in any way. Really, I post a lot and come on here way too much, because I just like being apart of the community.

Trust me. You will never be looked upon as Dr. Nagler. He was just the most inhumble(if that is a word) person you can ever come across. You are quite the contrary. I know you are just a normal guy too. Thats the beauty of it also. I stand by what I have always said. You are an inspiration and its some of your posts that have given me the most hope and positivity for the future, living with this devil. I love you for it as I have stated many times.
I will go as far as saying you are the soul of this forum. If you left I would be devestated.
The only thing that bugger me sometimes is that you dodge questions. I dont think its deliberate, but it happened again just now. Im really interested to know your whole journey, in detail, in how you got this far. Every drug you have taken and how you went about it. It can sometimes feel a little hard to grasp what you have really done or not done, as you have an opinion on so many things. I don´t know. Maybe I am asking for too much!
Lets just take it gradually, shall we! I also understand you need time to really confirm that you really are cured of T.

Anyway, I agree with Papu. You really dont have to explain anything about how you go about DB.
That you want to help shines through your every post!

 

[preslys]

thank you for all what you have written in particular your experience with Trobalt thanks to you I have decided to take Trobalt and I have found much relief .I can not take trobalt for ever because as you know it's hard to get ,today I take Neurotin I feel better especially when I listen to this music

thank you again

 

[dboy]

Hi Danny Boy, I don't usually post in this thread 'cos I'm not too clever with the science behind this stuff, but would like to offer my perspective now. I don't think anyone wants you to leave TT. You are nothing like Nagler (believe me!) and you would be missed a lot if you left. It is hard not to feel attacked when someone questions the validity of the information you give, so I understand how annoyed and stressed out you probably feel right now. I don't think anyone wanted to make you feel that way. I think there was just a degree of bafflement in trying to put together a clear picture of what has been causing the improvement in your tinnitus. I don't think anyone disbelieves you, it is just that for obvious reasons people want to understand exactly what you have taken at what stage and what effects it has caused. Without this knowledge it is hard for people to learn from your experiences... which is frustrating when you are the big success story.

As an observer, the confusion is understandable when looking at your posts - sometimes they do seem contradictory (eg. posts 5699 & 5769). Would you be able to give some kind of timeline for when you were or were not on each of the drugs that you credit with your success? You could indicate any uncertainty if you are doing it from memory. This would probably be a pain in the a**e to do, but might well be the biggest help you could give to the community here, as well as silencing any critics.

We all know you are one of the good guys. There really isn't any doubt about that. This thing reminds me a bit of a family squabble... all about communication patterns being out of step and minor frustrations bubbling over into into 'narkiness'. Don't let it get to you.

 

[nills]

Lastly, I jumped the gun and said I was cured. I guess I was just excited. I won't know until a few weeks, but even if I'm not I can't do anything about it. I'm used to masking and I've adapted to life with tinnitus and as I said, it's never returned to baseline. Either way, if people want me to stay, I will. If you want me to go I will. I don't want to be like Dr. Nagler hated by many. I'm just a normal guy, not special in any way. Really, I post a lot and come on here way too much, because I just like being apart of the community.

STAY STAY STAY STAY

give me an S give me a T give me an A and also a Y

STAAAAAAYYYYYY

 

[SteveSkis92]

@nills Don't take this the wrong way, but I love the fact that you're on this forum! (Of course I really wish that NONE of us were on this forum, but it is what it is) You cut through the dark and bring the joy on a regular basis! Keep doing THAT!

Let's look at the big picture here guys. Sure, clear communication is not the strongest attribute of some of our members here, that's true of the real world too! I understand that poor communication can be frustrating, but ultimately I think that 99% TT members, Danny Boy included, are here for support and to give support. It is a huge bonus that some members are willing to try off-label pharmaceuticals in an attempt to beat T and share their experiences.

Let's stay positive folks! We are FINALLY seeing pharmaceutical drugs have a HUGE impact on some people's T! This is NOT a drill! We're getting closer and closer, even if it is one baby step at a time!

- Steve

 

[SoulStation]

As an observer, the confusion is understandable when looking at your posts - sometimes they do seem contradictory (eg. posts 5699 & 5769). Would you be able to give some kind of timeline for when you were or were not on each of the drugs that you credit with your success?

I agree with this 100%

 

[Yo-Han]

Hey dannyboy. My 1st reply! I've been reading here since december 2014 (and way longer on other forums like yuku, stringplayer and hyperacusis chat)... and i sure could post some sharp hooks on neurology even if i'm no neurologist... but i won't do that ... I'm no neuro, who is here? Only @benryu had some real knowledge and he is an analyst-programmer who worked on brain analysing software. He hasn't posted the last 100 replys. He knew his stuff. Good analyst probably if he know how to translate that to computer code! (i work in IT too)

Why should you leave if you don't want too and the mods have no probs with you?? I only see one reason: youv'e habituated and are ok now. You can't stay here forever. Live your life and may that H and T stay low or be gone forever ... or may you just find peace with it. If you're story ain't finished here it ain't. Then stay
I think you mean well.

But keep in mind that not everyone is in his prime 20's or has the same tolerances when advocating certain medicine. Everyones system is different and might react different. Any good doctor knows this.
Then again, for short periods trobalt ian't gonna kill or something. Viking might have put you on the path and you yourself some others. Everyone is responsible for himself here. It's the info from the internet (Jen!) . You must filter.

ps I think TRT and the more medicinal approach(psychosomatic vs pathological ) should find each other instead of figting off in some cases towards T and H therapy.
(team team team team, if you can't work as a team you're all fired)

"geuss the comedy series (brittish off course)"

Dr Nagler has his way, but he has many strong points too! Like the focus on induvidual therapy for the heavy H and T patients. You can't apply one approach or therapy or medicine to all with a symptom as complex as T and H.

 

[locoyeti]

this thread has degenerated. i think trobalt is a great idea, and dannyboy has done some work towards encouraging some others to try it out, but my god does he need to self-censor a bit. don't just post whatever comes to your head! i remember when i came across this thread around this time last year we had maybe 40 pages, and it took me about 2-3 days to completely digest it- i really feel for someone who has t recently who has to wade through this thread. we are almost at 200 posts and i doubt that i would spend the time going through each page if i had to now, which is a shame because there is a lot of great information in this thread.

i think we should have a section dedicated to technical discussion, and have additional moderators to ensure that we stay on topic. and if you just want to use the forum to chat with other members, do so in PM or in the support section. lets try to improve the signal/noise ratio, we need a more productive level of discourse.

 

[Danny Boy]

Hey dannyboy. My 1st reply! I've been reading here since december 2014 (and way longer on other forums like yuku, stringplayer and hyperacusis chat)... and i sure could post some sharp hooks on neurology even if i'm no neurologist... but i won't do that ... I'm no neuro, who is here? Only @benryu had some real knowledge and he is an analyst-programmer who worked on brain analysing software. He hasn't posted the last 100 replys. He knew his stuff. Good analyst probably if he know how to translate that to computer code! (i work in IT too)

Why should you leave if you don't want too and the mods have no probs with you?? I only see one reason: youv'e habituated and are ok now. You can't stay here forever. Live your life and may that H and T stay low or be gone forever ... or may you just find peace with it. If you're story ain't finished here it ain't. Then stay
I think you mean well.

But keep in mind that not everyone is in his prime 20's or has the same tolerances when advocating certain medicine. Everyones system is different and might react different. Any good doctor knows this.
Then again, for short periods trobalt ian't gonna kill or something. Viking might have put you on the path and you yourself some others. Everyone is responsible for himself here. It's the info from the internet (Jen!) . You must filter.

ps I think TRT and the more medicinal approach(psychosomatic vs pathological ) should find each other instead of figting off in some cases towards T and H therapy.
(team team team team, if you can't work as a team you're all fired)

"geuss the comedy series (brittish off course)"

Dr Nagler has his way, but he has many strong points too! Like the focus on induvidual therapy for the heavy H and T patients. You can't apply one approach or therapy or medicine to all with a symptom as complex as T and H.

Welcome to tinnitus talk! And I haven't habituated, when I say cure, I mean I plug my ears and can't hear anything. Also, Dr. Nagler wasn't a nice person, he was very abusive to people and unkind. If you criticise me I take it in my stride and I am honest and open. Thank you for your kind words.

 

[markoana]

We all should be happy because of Danny Boy and his final (I hope) end with t. He was a bit inconsistent with his comments past 5, 6, 7 days. But he definetly had not bad intentions, and i think we can all agreed that he was very dedicated to TT, being guinea pig on his own hand, posting hundreds of informative links, researches etc...

Like few members already suggested, maybe best thing for Danny to contribute now is to summarize his journey with trobalt, kepra, when did he stoped taking, when did he start taking again. To fill those holes in his t. lifestory.
It would be great contribute to many members who are interested (And yes, it is his experience, not expected same will work for all).

And D. like I said 20 hours ago (maybe I brought u a luck ) stay well man !!!

 

[Christian78]

this thread has degenerated. i think trobalt is a great idea, and dannyboy has done some work towards encouraging some others to try it out, but my god does he need to self-censor a bit. don't just post whatever comes to your head! i remember when i came across this thread around this time last year we had maybe 40 pages, and it took me about 2-3 days to completely digest it- i really feel for someone who has t recently who has to wade through this thread. we are almost at 200 posts and i doubt that i would spend the time going through each page if i had to now, which is a shame because there is a lot of great information in this thread.

i think we should have a section dedicated to technical discussion, and have additional moderators to ensure that we stay on topic. and if you just want to use the forum to chat with other members, do so in PM or in the support section. lets try to improve the signal/noise ratio, we need a more productive level of discourse.

I am sory @Danny Boy but man is right. You should use more free time and more off computer. You have got life now use it, dont sit here and just write write. But of course STAY!!! You are our friend and I dont want louse you but cut it for 70% to 30%. You are not scientist. I know that you disease that you have that you got pension for dont let you go out, but you must fight to go out. I dont remember of decease and i will find out... but live a life.. forget tinnitus now.

You are good guy and try to life life, imagine if tinnitus get beck in worse condition and you did not lived a bit, you were scared of people and sit home and just wrote here. Try to live a bit, fuck commuter games, go to Paris... it is warm...

Love you

 

[Christian78]

We all should be happy because of Danny Boy and his final (I hope) end with t. He was a bit inconsistent with his comments past 5, 6, 7 days. But he definetly had not bad intentions, and i think we can all agreed that he was very dedicated to TT, being guinea pig on his own hand, posting hundreds of informative links, researches etc...

Like few members already suggested, maybe best thing for Danny to contribute now is to summarize his journey with trobalt, kepra, when did he stoped taking, when did he start taking again. To fill those holes in his t. lifestory.
It would be great contribute to many members who are interested (And yes, it is his experience, not expected same will work for all).

And D. like I said 20 hours ago (maybe I brought u a luck ) stay well man !!!

I used it and it was good for 4 month and then it came back worse... i use it for sleeping , but no effect on tinnitus even on overdose!

 

[valeri]

@Danny Boy

Why on earth would you compare yourself to Nagler???

I appreciate your presence here on TT so STAY!!!

 

[ruben ruiz]

Stay Danny Boy your providing much positive input.

 

[Danny Boy]

Stay Danny Boy your providing much positive input.

Thank you! I will be. I think the future is bright for all of us.

 

[Danny Boy]

I am sory @Danny Boy but man is right. You should use more free time and more off computer. You have got life now use it, dont sit here and just write write. But of course STAY!!! You are our friend and I dont want louse you but cut it for 70% to 30%. You are not scientist. I know that you disease that you have that you got pension for dont let you go out, but you must fight to go out. I dont remember of decease and i will find out... but live a life.. forget tinnitus now.

You are good guy and try to life life, imagine if tinnitus get beck in worse condition and you did not lived a bit, you were scared of people and sit home and just wrote here. Try to live a bit, fuck commuter games, go to Paris... it is warm...

Love you

Awwww, thanks Christian. I've invested so much time on here, that even if I wanted to leave I wouldn't want to. I love you guy/gals.

 

[passerby]

don't just post whatever comes to your head!

Epic comment... like reading some folks messages on Facebook: "Going to do some gardening today" then 15 min. later: "Oh no, it started to rain. Guess gardening will have to wait!"

This thread is 90% trash-talk. A kindergarden. No wonder folks like @attheedgeofscience left.

a (concerned) passerby

 

[Danny Boy]

Epic comment... like reading some folks messages on Facebook: "Going to do some gardening today" then 15 min. later: "Oh no, it started to rain. Guess gardening will have to wait!"

This thread is 90% trash-talk. A kindergarden. No wonder folks like @attheedgeofscience left.

a (concerned) passerby

I wasn't trashing him? I still think he is you lol.

 

[markoana]

I used it and it was good for 4 month and then it came back worse... i use it for sleeping , but no effect on tinnitus even on overdose!

I know Christian, but I suggested to Danny (because as u saw, few members were quoting his contradictions in comments) to fill those holes in his life story abt t. Because he said that he was started again trobalt, so when, how much...etc

Just my suggestion as peaceful thing for all memebers of this thread...same boat for all of us, no need for anything negative here..

 

[dboy]

i remember when i came across this thread around this time last year we had maybe 40 pages, and it took me about 2-3 days to completely digest it- i really feel for someone who has t recently who has to wade through this thread. we are almost at 200 posts and i doubt that i would spend the time going through each page if i had to now, which is a shame because there is a lot of great information in this thread... lets try to improve the signal/noise ratio

This reminded me of a discussion on the diyaudio website about how best to implement the TPA3116D2 chip. The thread itself got ridiculously long, but some kind souls went through all the chatter and extracted key points into a "wiki" so newbies could get the most important info without too much effort. Don't know if this is a useful idea here? (Not that I'm volunteering - I definitely feel out of my depth with the brain science here.)

http://www.diyaudio.com/forums/class-d/237086-tpa3116d2-amp.html
http://www.diyaudio.com/wiki/TPA3116D2_Boards

 

[1MW]

Ι can confirm that 400mg rtg stoped my T 1 hour.
16mg methylprednisolone stops it 36 hours

 

[Rube]

Epic comment... like reading some folks messages on Facebook: "Going to do some gardening today" then 15 min. later: "Oh no, it started to rain. Guess gardening will have to wait!"

This thread is 90% trash-talk. A kindergarden. No wonder folks like @attheedgeofscience left.

a (concerned) passerby

It's too bad he left. The work he did to advance tinnitus research is unparalleled. We must be at least 5 years closer to a cure. I'm thankful for his contributions.....

 

[lapidus]

It's too bad he left. The work he did to advance tinnitus research is unparalleled. We must be at least 5 years closer to a cure. I'm thankful for his contributions.....

Dude, you're talking to him now. Passerby is ATEOS.

 

[Yo-Han]

@Danny Boy oh so no more T.... I thought you still had minor 't' like a 1. Well one can call that 'cured' yes. Its not always clear what cured you doh, im not gonna elaborate on that here. I understand your sometimes bit exctatic mood to help. You had it bad enough with T+H .... and the good thing is your ok now. I just wanted to say that and you should live your life know. Too much forum (wether health or hobby) time ain't no good for anyone.

 

[jeannie]

You need to stay on here Danny boy....you give out positive remarks and was a guinne pig to try different meds together. And post on here ..STAY

 

[Danny Boy]

You need to stay on here Danny boy....you give out positive remarks and was a guinne pig to try different meds together. And post on here ..STAY

Yeah, I was on too many meds. Surprised I'm still alive.

 

[Yo-Han]

My respect for both the guinea pigs and the people who kinda took the forum info (not the form that researchers like) and molded that into usable data for them researchers and get their much valued attention.
I'm not a big fan of big pharma, but at least there's attention to the T and H problem now.

I don't know if some short of sticky-wiki thread could be of importance in this fase of the thread with AUT fase 3 coming closer... but neverthelass good idea @dboy. Especially for new users who want a good clean info read

ps. My neurological balance is to delicate now to try these AED's. Im still trying a more soft approach for my T and H. And i'm allready too long on those damn benzo's, even not a huge dose (way before TMJ and T hit me, to ice it of with H last december )

 

[Hengist]

Can someone post what is the situation with this and other meds and research on the cure?