I got married last year and got a big kiss over my ear, I thought at first they had burst my ear drum, it was instant noise, I didn't know what had happened
I Was a Guinea Pig in the Autifony QUIET-1 Study, Great Results
- Thread starter Mrs D
- Start date
MemberIt's horrible isn't it? I am concerned that Autifony's drug isn't as powerful as trobalt, as made by Autifony's ceo before he left GSK.
Because it only works on 1 channel....Trobalt works on 5, including KV3.1 and KV7. The KV7 channels are important in relation to tinnitus as they decrease when tinnitus first becomes apparent.
It also works on the KV2 channels, which causes the water retention.
http://onlinelibrary.wiley.com/stor...wq&s=cc589bd2fbbc3ee2229eb39b08a09fa63c0b6bb6
Hey Jesse Pinkman maybe you have some other privileges but i get this message on the link, maybe u can just copy paste the text
You don't have permission to access /store/10.1111/j.1528-1167.2011.03365.x/asset/j.1528-1167.2011.03365.x.pdf on this server.
I would, but there's so, so much, that it'll take up the whole thread. I'll try and find it again.
Retigabine is best described for its novel mechanism of action that involves specific activation of neuronal M-current encoded by Kv7.2-7.5 voltage-gated potassium channels
from this link http://www.molecularpain.com/content/6/1/49
that means 7.2, 7.3 7.4 and 7.5 4 sub-units, AUT is only 3.1: one subunit=less side effects
I know that...Wasn't some person making a drug that works on the KV3 channels in addition to the KV7 channels?
I haven't heard of that drug, I will have to read up on it.mtge best drug I have at the minute is wine
@Mrs D.
Thank you so much for joining this forum and giving us your experiences. We all really appreciate it. Yes it gives hope and we are very grateful to you.
I have one question though which @Hotspur asked. He was on the trial and had no effects I believe so probably got placebo. However he was not offered any news by the trial about joining a stage 3 trial (in the UK) and he was asking you about this as he had no further contact from the trial apart from during his participation and taking the pills. Were you told this about stage 3 trial during the trial or after the trial and were you told when they thought this stage 3 trial would start? Please hopefully you don't mind me asking you this question (on behalf of @Hotspur again) as you may have not seen his question which appeared earlier in this thread. Again huge thanks to you for your participation in the trial and for coming to this forum to discuss your experiences.
Thank you so much for joining this forum and giving us your experiences. We all really appreciate it. Yes it gives hope and we are very grateful to you.
I have one question though which @Hotspur asked. He was on the trial and had no effects I believe so probably got placebo. However he was not offered any news by the trial about joining a stage 3 trial (in the UK) and he was asking you about this as he had no further contact from the trial apart from during his participation and taking the pills. Were you told this about stage 3 trial during the trial or after the trial and were you told when they thought this stage 3 trial would start? Please hopefully you don't mind me asking you this question (on behalf of @Hotspur again) as you may have not seen his question which appeared earlier in this thread. Again huge thanks to you for your participation in the trial and for coming to this forum to discuss your experiences.
Yeah, basically. People using trobalt who had both tinnitus and epilepsy reported improvements in tinnitus, so it was by complete accident they discovered these drugs worked for tinnitus. After that, Dr. Charles Left and started working on a safer drug for tinnitus. By the way, don't go to self serving people, they only want to hear their own voice and waste time thinking about oneself rather than others. Wasted his time....More like he wasted your time.
Totally agree Danny and that was my point. However the real point is that even this self serving bumpkin of a doctor Dauman who has a huge ego but little else to offer DID know well about the use of Trobalt for T - that is the point I think. That the knowledge of the use of Trobalt for T is well known.....not just by us on TT and team trobalt here but amongst the T doctors certainly here in France.
You having taken Trobalt for around 8 months now approx. and having kicked your T right down to a 1 is fantastic.....I am sure that we would all take it if we were not worried about the potential bad side effects which yes happily you have not apparently suffered at all. Very sadly yes Christian78 has had really bad side effects and I hope he gets over these effects soon and gets much better.
The only problem with you (and all of us who may take it) as you are also aware is what happens when you stop taking the Trobalt and the Keppra and, even if nothing happens and your T stays low, you don't know yet if you have any unseen physical damage from the Trobalt and the Keppra as you are self administrating the drugs with no medical supervision for these drugs. That is absolutely fair enough, this self administration, as it is impossible for you to have medical assistance for these drugs as the docs won't prescribe them for you and wanted to leave you to suffer (just like I have and others here have experienced too) You had to choose for yourself and pay for yourself for these drugs and you have done so - fair play to you for being prepared to risk it and achieving 8 months of near silence! Personally I am beginning to think that you may be right and that there is little choice but to take Trobalt.......but it is scary stuff as we all know.......the only thing is that Autifony seems to be on to something and then there is maybe something coming out of France too? Maybe France and Autifony are the same thing and they are in competition to get to the post before the other? Who knows? France shows a 20 percent complete reduction of T and an 80 percent big improvement.....supposed to be rolled out as standard practice for T across the whole of France by the end of 2015 but apart from this have not yet been able to get more information.
The bumpkin doctor that I saw (described above) told me that Dr George Lamas of Pitie Hospital in Paris knows nothing about T and was just an ordinary ENT person (ORL in French). However Dr Lamas is described as being one of the doctors who is primarily involved with this new treatment giving anti epileptic drug. When I asked bumpkin Dauman to please telephone or email his colleague Lamas in Paris and ask about the new treatment he categorically refused and seemed quite annoyed about it too. When I asked this supposed leading T doctor Dauman about AM 101 he told me that he decided to not be involved with it. However when one speaks to other centres in France running AM 101 I have been told to speak with Dauman as he is the central point in France for AM 101..............sigh!! give up feeling..........
That's one long message. Anyway, I may have been on trobalt for 8 months, but personally, I have to say, if I didn't I would've been dead...I never had normal tinnitus that's for sure it was too loud, so loud that I could hear it outside over everything and it was always there...Now I can't hear it outside and only in quiet rooms. It's manageable now and hyperacusis is gone, thank the lord and reactive tinnitus which I personally think is the worst kind of tinnitus has gone. So yeah, the mixture I made truly helped me. I know I go on and on and on, but there's reason behind it...I want others to be in a good place, where they feel great. I'm just enjoying life now, rather than trying to fight this day by day
As for the new french drug, we don't know what that is? Will they even disclose what it is? So that others can get it? If it's trobalt, that will make me laugh. Nevertheless, there are drugs which are coming out to help us sufferers and that we should be thankful for. There are many people who suffered their entire life and have not had what we have. There was no hope, we have that hope, so cling on to it and fight, because there is a silver lining.
- May 7, 2015
- 1,050
- Tinnitus Since
- 29.09/2014
- Cause of Tinnitus
- Acoustic trauma using headphones
Again, I must say that some of your posts just fills me with hope and better understanding for this condition. And I really really love you for it DannyBoy. You must never ever leave this forum. You are important to me.
Somwhere down the line I am also hoping to try Trobolt out, even though I cant say I look forward to arguing with doctors about it. But my first priority is to get off this never ending benzowithdrawl that haunts me every fucking day. Im also currently on two different AD´s and I just can´t imagine that they will go well with Trobolt in the mix. But Im no psychiatrist.
Thanks for your kind comments. I hope you do try trobalt and have positive results like me and MPT have. I don't know what AD's are sadly? And if you are gonna do a benzo withdrawal I suggest campral, as it helps balance the brain chemicals out. Good luck buddy.
- May 7, 2015
- 1,050
- Tinnitus Since
- 29.09/2014
- Cause of Tinnitus
- Acoustic trauma using headphones
Thanks Danny! By AD´s I mean antidepressants. Effexor and Remeron together. The combination of the two even has a slang name: "Californian Rocketfuel". Supposed to be a highly potent remedy for severe depressions. I, like you with Trobolt, would be dead without it!
Ah, it's horrible having it that loud...I know both sides of the coin...Mild and super high pitched tinnitus...Hearing it everywhere and anywhere is like a death sentence....Seriously, they could torture people with giving people tinnitus not stabbing them.
of course I did!!!
Do you think a person who truly suffers from T wont try something that could help?
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