How Many Horror Stories Is It Going to Take???

[valeri]

There is literally no clinical evidence whatsoever that Trobalt is a safe or effective treatment for tinnitus. There are a handful of anecdotes from the internet based on a single clinical study in rats (which was not even trying to address the impact of the drug on chronic tinnitus).

If doctors were in general more willing to throw extremely dangerous drugs at people based on random posts from internet forums, I think the world would be more scary, not less scary.

It's an extremely low-market-penetration drug, because it's extremely dangerous, and hasn't proven to be very effective for the exact conditions it's approved to treat (treatment resistant partial-onset seizures). My experience was that it was pretty easy to get in the US, but that's because doctors here are, in general, drug happy.

Personally, I very quickly found the side effects worse than the tinnitus. I believe people should be able to try this stuff if they want to, because I'm essentially a libertarian when it comes to drug policy, but we absolutely need to stop the "trobalt cures tinnitus!" meme that seems to keep popping up here, because it's not true.

You may be right in everything you said but please don't forget the seriousness of this condition for others.
If you were as desperate as this poor man was would you say: no thanks, Trobalt is too dangerous! Now I'm off to myself!

No one here is saying Trobalt is a cure, but at the same time we can not ignore the results from others who tried it.

So all I'm saying when a poor soul gets pushed against the wall and there is nowhere to go why not try Trobalt? Why not have it available? Why not have it further tested? Changed, modified?
But even as is it can't be worse than how this poor man ended

 

[RaZaH]

@amandine so , it just needs clicks and not reads ? What is the point of that ?
3000 people need to open the document and close it again , I seriously fail to see the purpose of that?
Please enlighten me .

 

[Blackbird26]

You may be right in everything you said but please don't forget the seriousness of this condition for others.
If you were as desperate as this poor man was would you say: no thanks, Trobalt is too dangerous! Now I'm off to myself!

No one here is saying Trobalt is a cure, but at the same time we can not ignore the results from others who tried it.

So all I'm saying when a poor soul gets pushed against the wall and there is nowhere to go why not try Trobalt? Why not have it available? Why not have it further tested? Changed, modified?
But even as is it can't be worse than how this poor man ended

I always said to try it * if only you have a gun to your head*

Regardless, even then not all docs will give it. I belonged to a fb support group and a man there couldnt get it and did have a gun to his head!! He died..and it's a tragedy...We just need a better drug or options..but even then, not one size will fit all...

 

[erik]

I have seen a lot of bickering lately about Facebook. The Facebook algorithm is much more complex than just liking or sharing something and hoping someone else does the same to get noticed. There is a science to it.

Facebook decides for each and every person what they will and will not see. We have some but little control over it. Facebook determines which posts are relevant or not and adjusts its algorithm accordingly. It's just not a matter of it showing up in your newsfeed or our friends newsfeeds. Even if you like or share it, it may not show up for 80% or more of your friends. There are many factors which go into the algorithm. Are you on a home computer or mobile? It will show different feeds on different devices. Timing is another one of them- timing such as tying your post to a current hot news event or time of day. Trending topics always rate high. Posts which engage people and create interest, rate high. Also, posts which elicit many comments and feedback go a long long way in determining it's success.

Outside of your friends, it is very difficult to get noticed without paying money. It can be done but it is tough. It used to be much easier before last year and since then the algorithm has been re-adjusted at least 3 times. Now you can only expect a click through rate of 1.5-2.5% if that even if you pay. You need tens of thousands of likes to get noticed and make any kind of impact on a large scale.

Connecting emotionally with people - strangers and strangers alike will go a long way on FB.

Sorry to get a little off topic here.

 

[Markku]

I have seen a lot of bickering lately about Facebook. The Facebook algorithm is much more complex than just liking or sharing something and hoping someone else does the same to get noticed. There is a science to it.

Facebook decides for each and every person what they will and will not see. We have some but little control over it. Facebook determines which posts are relevant or not and adjusts its algorithm accordingly. It's just not a matter of it showing up in your newsfeed or our friends newsfeeds. Even if you like or share it, it may not show up for 80% or more of your friends. There are many factors which go into the algorithm. Are you on a home computer or mobile? It will show different feeds on different devices. Timing is another one of them- timing such as tying your post to a current hot news event or time of day. Trending topics always rate high. Posts which engage people and create interest, rate high. Also, posts which elicit many comments and feedback go a long long way in determining it's success.

Outside of your friends, it is very difficult to get noticed without paying money. It can be done but it is tough. It used to be much easier before last year and since then the algorithm has been re-adjusted at least 3 times. Now you can only expect a click through rate of 1.5-2.5% if that even if you pay. You need tens of thousands of likes to get noticed and make any kind of impact on a large scale.

Connecting emotionally with people - strangers and strangers alike will go a long way on FB.

Sorry to get a little off topic here.

This is true.

On average, per published FB update, only around 10-15% of our fans are reached. That is when the update isn't sponsored (paid). And as FB has become more popular for advertising, the prices have gone up too.

We have had a couple popular 100% organic updates too, which reached twice the number of our fans, because those updates were initially shared more than what is on the average by the initial 10-15% group who are reached.

 

[Cheza]

There is literally no clinical evidence whatsoever that Trobalt is a safe or effective treatment for tinnitus.

There are drugs that are prescribed off label for which there is no clinical evidence. It's not that unusual, and it's usually something that's stumbled upon and then the knowledge is shared amongst physicians and/or the patient community.

If doctors were in general more willing to throw extremely dangerous drugs at people based on random posts from internet forums, I think the world would be more scary, not less scary.

What could possibly be scarier than suicide as an outcome? Desperate times call for desperate measures, and no one is suggesting that doctors "throw" dangerous drugs at their patients willy-nilly. It's a conscientious decision made after weighing the pros and cons.

Personally, I very quickly found the side effects worse than the tinnitus. I believe people should be able to try this stuff if they want to, because I'm essentially a libertarian when it comes to drug policy, but we absolutely need to stop the "trobalt cures tinnitus!" meme that seems to keep popping up here, because it's not true.

You're extrapolating your experience and applying it to others, which is the other side of the coin of saying "trobalt cures tinnitus." @Dan couldn't take the side effects of trobalt, either, but he doesn't discourage those who suffer from severe tinnitus from at least trying it.

I never have said trobalt is the be-all/end-all cure for tinnitus. I do, however, believe a person should be made aware of all potential treatments, advised of risk/benefit, and let the patient decide with oversight by their doctor. Suicide is terminal, but trobalt's side effects are temporary, at least according to what I've read about it, on this forum and elsewhere. My position is, what if it had worked for him? But Mr. Jones never was given the chance to even try trobalt.

Okay, edit to add that I've read the permanent use of a catheter. I'll check that out, but again, it's better than suicide. Not to be flippant, but you can always kill yourself later if trobalt doesn't work or screws you up even worse.

 

[Dana]

@Cheza
I agree with everything you said. The only thing that I have to add would be that the option to try Trobalt should belong with the tinnitus sufferer, not with the medical professional, who, with all his "medical studies", has no clue as to what is the T sufferer confronted with, how things look from the sufferer's perspective, and only knows to categorise the T sufferer when he is talking about suicide as "mentally ill", whilst wanting to put yourself out of that torture in not only "not insane", but the most common sense decision that a poor soul suffering that kind of torture can have.
REFUSING Trobalt as a last attempt to try to do something of a last resort, something that may save somebody who is in the vicinity of suicide for a good reason (being like burned on a stake), i find that CRIMINAL.
If the "medical professional " doesn't want to give Trobalt because he doesn't want the responsibility for doing that, that responsibility can easily be taken by the person who is in torture, by a simple signature on some paper.
Problem is that medical professionals FAIL to understand the situation at hand, how it is to have several sounds of different frequencies in your head 24/7 at unbearable volume, possibly because..... they simply don't care.
Excuse the errors, English not my first language.

 

[Telis]

This trobalt thing is retarded, tinnitus is all over the place for everyone, there is no way to conclude that this drug Helps in any way. There are a zillion supplements, drugs, diet changes that people claim to lower/cure their T, I think it's all bunk. If you tried everything that people "claim" cured/helped them, it would be a full time job and a loosing battle. Not to mention, if any of this stuff actually helped, we would all be better by now.

A few people that apparently got relief from taking trobalt out of probably thousands that have tried it now (with zero results) is laughable at best. After reading the entire retigabine thread it's pretty easy to conclude that this drug does jack shit besides get you high as hell and relax you. If this were a real trail, it would be shut down just like AUT.

I find it incredible that people would still conclude that this drug is effective. I guess people hang on to anything and loose all sense of reality when they suffer. It's actually pretty sad. It's simple, if a few people find relief, and the masses don't, you go with the numbers, it's not rocket science.

I'm sure if I served up a steaming pile of my dogs crap as a cure to a couple of thousand people that had T, there would be at least a few that found relief. It's our job to look at probability, come to our own conclusions and not be fools just because we suffer.

 

[mohamad-m]

This trobalt thing is retarded, tinnitus is all over the place for everyone, there is no way to conclude that this drug Helps in any way. There are a zillion supplements, drugs, diet changes that people claim to lower/cure their T, I think it's all bunk. If you tried everything that people "claim" cured/helped them, it would be a full time job and a loosing battle. Not to mention, if any of this stuff actually helped, we would all be better by now.

A few people that apparently got relief from taking trobalt out of probably thousands that have tried it now (with zero results) is laughable at best. After reading the entire retigabine thread it's pretty easy to conclude that this drug does jack shit besides get you high as hell and relax you. If this were a real trail, it would be shut down just like AUT.

I find it incredible that people would still conclude that this drug is effective. I guess people hang on to anything and loose all sense of reality when they suffer. It's actually pretty sad. It's simple, if a few people find relief, and the masses don't, you go with the numbers, it's not rocket science.

I'm sure if I served up a steaming pile of my dogs crap as a cure to a couple of thousand people that had T, there would be at least a few that found relief. It's our job to look at probability, come to our own conclusions and not be fools just because we suffer.

I could not agree more , it's like when. I took a benzo yesterday cause I couldn't sleep cause of my t and I felt relaxed and just did not care about my t anymore , that's what Trobalt does in my opinion after read the thread the ones who say cured tinnitus and hyperacus are full of bs and just want attentib online cause they can't get any in real life

 

[Dana]

A few people that apparently got relief from taking trobalt out of probably thousands that have tried it now (with zero results) is laughable at best.

The part with "probably thousands (???) that have tried it" I think is the only laughable part of your above phrase. Cause the part with "a few people apparently got relief from taking trobalt" is cerainy not laughable. If only one person got relief (Mpt) that is not "laughable", but actually extremely serious. We are not talking statistics here. What can help somebody can harm another. I would say that even a single sure case of severe case cured with Trobalt (I don't believe in some huge coincidence between starting trobalt and starting to get relief) is a good reason to look at trobalt very seriously.

 

[Telis]

The part with "probably thousands (???) that have tried it" I think is the only laughable part of your above phrase. Cause the part with "a few people apparently got relief from taking trobalt" is cerainy not laughable. If only one person got relief (Mpt) that is not "laughable", but actually extremely serious. We are not talking statistics here. What can help somebody can harm another. I would say that even a single sure case of severe case cured with Trobalt (I don't believe in some huge coincidence between starting trobalt and starting to get relief) is a good reason to look at trobalt very seriously.

Okay...go get it. Grab some cats claw, ginko, vit B and the tinnitus miricle cure while you are at it, Ive heard good things! If those don't work, my dogs warm pile helped me a lot, I'm 90 percent better. Just to warn you though...it's not cheap! I sell it by the pound, you can use it as tea if I dry it out, very calming as well.

And yup, probably thousands.

 

[Dana]

@mohamad-m
For your information, some benzos reduce T, and maybe you took one of those and that's the the reason you felt so relaxed and indifferent to T.
To accuse people that say they got relief from T or H with certain drugs of being liers or to say that they are too high to know what they are doing and they seek an attention they don't get in real life is just an insult with no base.
I personally am convinced that Mpt got cured thanks to Trobalt, and when Danny Boy started trobalt (it is true that I am worried about him not getting off of it) he was having a baby daughter he just wanted to continue to be the father of. From what I know babies are fond of their parents and want to be with them all the time, so I am not worried about Danny not getting attention in real life. I never got that much attention like i've got from my boy when he was growing. Even now he pays a lot of attention to me and I feel like crap because I cannot be a better, cheerful parent because of this damn T.

 

[Dana]

@Telis
Problem is, with your dog warms, Telis, is that I do not think that you are 90% better thanks to them, I think they just got you very high, which also explains the high price, similar to narcotics, that you put on them.

And you don't seem calm at all!

On what base you state that "probably thousands tried trobalt"?
You are just counting on the fact that saying "probably" will exonerate you from having to come with some proof? In the same fashion why you don't say "probably millions tried trobalt", or "probably billions tried trobalt"? Same BS.

 

[mohamad-m]

@mohamad-m
For your information, some benzos reduce T, and maybe you took one of those and that's the the reason you felt so relaxed and indifferent to T.
To accuse people that say they got relief from T or H with certain drugs of being liers or to say that they are too high to know what they are doing and they seek an attention they don't get in real life is just an insult with no base.
I personally am convinced that Mpt got cured thanks to Trobalt, and when Danny Boy started trobalt (it is true that I am worried about him not getting off of it) he was having a baby daughter he just wanted to continue to be the father of. From what I know babies are fond of their parents and want to be with them all the time, so I am not worried about Danny not getting attention in real life. I never got that much attention that i'very got from my boy when he was little. Even now he pays a lot of attention to me and I feel like crap because I cannot be a better, cheerful parent because of this damn T.

Ok if you're so convinced and your life has stopped cause of "damn t" why don't you try Trobalt you're self !!?

 

[Dana]

@mohamad-m
Couldn't get it yet.

 

[Telis]

@Telis
Problem is, with your dog warms, Telis, is that I do not think that you are 90% better thanks to them, I think they just got you very high, which also explains the high price, similar to narcotics, that you put on them.

And you don't seem calm at all!

On what base you state that "probably thousands tried trobalt"?
You are just counting on the fact that saying "probably" will exonerate you from having to come with some proof? In the same fashion why you don't say "probably millions tried trobalt", or "probably billions tried trobalt"? Same BS.

Nope educated guess, been here for a long time, talked to a lot of people.

Whatever it doesn't matter, the cure is right around the corner for you, just those damn stupid educated doctors standing in your way to freedom hey? What do they know! I mean MPT got cured!! Idiots. You tell em dannyboy and MPT online were cured! Tell the world!!

 

[Dana]

@Telis
Please also quote me, if you can, where I said that a cure is right around the corner for me, but I am not set free because of the "damn stupid educated doctors". I just implied that i would give Trobalt a try. That's all.
Like I said, you seem nervous. Maybe you didn't take enough of your dog worms for today?

And yes, some doctors are so stupid that they seem to have been educated to be so, can't believe they were born this way.

 

[Telis]

@Telis
Please also quote me, if you can, where I said that a cure is right around the corner for me, but I am not set free because of the "damn stupid educated doctors". I just implied that i would give Trobalt a try. That's all.
Like I said, you seem nervous. Maybe you didn't take enough of your dog worms for today?

And yes, some doctors are so stupid that they seem to have been educated to be so, can't believe they were born this way.

Dana, I wish you the best, I honestly hope that trobalt helps you. I'm going to end it at that, the last thing I want to do is upset anyone here, it's just my opinion. Take care

 

[Dana]

@Telis
Thank you for your wishes that I will obtain trobalt one day and that trobalt will help me. (Or something else). As for upsetting me, don't worry, you couldn't upset me more than how upset I got when I found this thread of Dubbyaman giving us the news about this poor soul who killed himself after 6 months of increasing and increasing T. I don't even want to think about what he has been through. THAT is upsetting!

 

[Martin69]

This trobalt thing is retarded, tinnitus is all over the place for everyone, there is no way to conclude that this drug Helps in any way. There are a zillion supplements, drugs, diet changes that people claim to lower/cure their T, I think it's all bunk. If you tried everything that people "claim" cured/helped them, it would be a full time job and a loosing battle. Not to mention, if any of this stuff actually helped, we would all be better by now.

A few people that apparently got relief from taking trobalt out of probably thousands that have tried it now (with zero results) is laughable at best. After reading the entire retigabine thread it's pretty easy to conclude that this drug does jack shit besides get you high as hell and relax you. If this were a real trail, it would be shut down just like AUT.

I find it incredible that people would still conclude that this drug is effective. I guess people hang on to anything and loose all sense of reality when they suffer. It's actually pretty sad. It's simple, if a few people find relief, and the masses don't, you go with the numbers, it's not rocket science.

I'm sure if I served up a steaming pile of my dogs crap as a cure to a couple of thousand people that had T, there would be at least a few that found relief. It's our job to look at probability, come to our own conclusions and not be fools just because we suffer.

Hey Telis. So what's the plan if nothing helps?
Living with it in misery until God takes us into heaven?

I have done nothing (or not much) the first year. People said there is nothing and I will start to recover once I do not look for treatments. But nothing happened. No recovery. Therefore I decided taking therapeutic dosages of supplements, eat healthier, avoid stress etc. Does it help? No, not really.

Hoping for a cure like AUT00063 helped me somehow. Hoping for SF34 or anything else helps me, too. I have benzos and Trobalt here. I take seldom, but having them helps me a little bit.

So what shall we do? We can only live the day the best as possible. And hope that one day our brain has enough and stops this craziness in our head.

 

[Carlos1]

Hey Telis. So what's the plan if nothing helps?
Living with it in misery until God takes us into heaven?

I have done nothing (or not much) the first year. People said there is nothing and I will start to recover once I do not look for treatments. But nothing happened. No recovery. Therefore I decided taking therapeutic dosages of supplements, eat healthier, avoid stress etc. Does it help? No, not really.

Hoping for a cure like AUT00063 helped me somehow. Hoping for SF34 or anything else helps me, too. I have benzos and Trobalt here. I take seldom, but having them helps me a little bit.

So what shall we do? We can only live the day the best as possible. And hope that one day our brain has enough and stops this craziness in our head.

Hey Martin well I wouldn't hesitate to take klonopin if I'm having a bad day.....or sometimes I go out have couple beers sometimes for some weird reason that helps but the one thing I try not to do is just sit there and listen to my T and let my mind run away with the little sanity I have left.
God bless

 

[Sgguy46]

@Martin69 does trobalt help u?

 

[randomuser]

Hey Telis. So what's the plan if nothing helps?
Living with it in misery until God takes us into heaven?

I have done nothing (or not much) the first year. People said there is nothing and I will start to recover once I do not look for treatments. But nothing happened. No recovery. Therefore I decided taking therapeutic dosages of supplements, eat healthier, avoid stress etc. Does it help? No, not really.

Hoping for a cure like AUT00063 helped me somehow. Hoping for SF34 or anything else helps me, too. I have benzos and Trobalt here. I take seldom, but having them helps me a little bit.

So what shall we do? We can only live the day the best as possible. And hope that one day our brain has enough and stops this craziness in our head.

Hope is powerful. Really powerful. While the Autifony hype was still going on, when I was through bad days, only thinking that something good was coming was a great relief. Not to the sound, of course, but to my emotioal state. Now I see no solutions in the short term. I was so hyped and now, what else do we have? SF00034 is under attack (look for the KC media attack in ATEOS posts). Science advances, surely, but very slow, and is reaaaaally easy to become desperated.

It's worth noting that I'm going through a mild depression, withdrawing from clonazepam and scared, and having a shitty day.

Anyway, I shouldn't be posting here, I should stop entering the forum for a while.

 

[amandine]

You tell em dannyboy and MPT online were cured! Tell the world!!

Telis - @preslys has also put a short post that he has also been cured. He says he took Trobalt and Nuerontin.
By the briefness of his posts it doesn't seem like he has posted for attention! It would seem that he has had a cessation of his Tinnitus. I have never seen any evidence of Preslys trying to get attention.........? @locoyeti has said that he has a permanent lowering of his T......I also dont see any evidence of him posting for attention....?

Quite a lot of people have posted that they have found a certain amount of relief using Trobalt even if that relief i s temporary with others saying that they have found permanent relief......so something is going here with this drug......

 

[linearb]

There are drugs that are prescribed off label for which there is no clinical evidence. It's not that unusual, and it's usually something that's stumbled upon and then the knowledge is shared amongst physicians and/or the patient community.

I'm not aware of a drug which has as serious a side-effects profile as Trobalt finding mass acceptance as an off-label drug; I think it would be more or less unprecedented. Beyond that, I personally take a dim view of off label drug use in general; there are plenty of horror stories (and, in many cases, lawsuits where pharma co's have paid out big) as a result. So, perhaps we have to just disagree on that -- and I admit that I'm biased because I basically feel like I was damaged by drugs at a young age from doctors who were too happy to send a 13 year old home with off-label psych meds (and for all I know, some of that helped set me up for T...)

What could possibly be scarier than suicide as an outcome?

I do not believe that reducing the anecdote in question to "trobalt" or "suicide" is an accurate characterization. And, to be a little bit snarky, I don't think death or suicide are, by any stretch of the imagination, the worst things that can happen to a human.

My position is, what if it had worked for him? But Mr. Jones never was given the chance to even try trobalt.

He also wasn't given the chance to try reiki crystals, electro-convulsive therapy, or any other random treatment which has no evidence to support its efficiency for tinnitus treatment. And, at the end of the day, he didn't have a chance to try these treatments because he decided to take his own life instead.

I don't think it's realistic to expect doctors -- even specific ENT doctors -- to know what's going on at the "cutting edge" of unscientific user-trials of dangerous drugs off label from the internet. So, sadly, it falls to the sufferer to educate themselves, find out about those options, and advocate for them. Plenty of people on here have done exactly that, and this person could have.

The bottom line is that what I object to here is the entire framing of the article; someone had T for 6 months and committed suicide. Okay. Lots of people have been on here with very severe tinnitus for a lot longer than that and are still around swinging. Some of them claim to be pretty well habituated even to persistent, intrusive, loud, high frequency noise. Any time someone commits suicide, there are dozens of factors that filter in to that, which are not going to come across in a sensationalist news blurb. So, I don't think that's really a reasonable starting point for an argument.

 

[linearb]

and just to clarify -- any time someone has been engaged with the medical system, and then commits suicide as a result of a non-terminal condition, I do believe that it represents a failing of the health system. I just think that the failure here is the failure to recognize the severity of his distress, the failure to explain that most people improve to some extent over a 6-12-18-24 month period, and the failure to provide a good enough support and awareness network to make this person feel loved, not alone, and to come to believe that their life is not over.

That's a staggering, catastrophic failure which his family is now burdened with forever -- but I don't think it's got much to do with Trobalt.

Sorry if I am coming across at all as combative, @Cheza -- I get surly before I've had my coffee. I completely respect your opinion and viewpoint, and you're definitely correct that my own negative experience with Trobalt has soured me towards it, perhaps to an unreasonable degree.

 

[Blackbird26]

Has this thread really turned into Mr. Jones should of been offered Trobalt for his T?

If I walked into my docs office and said, " Yea there is this drug called Trobalt (he probably wouldn't know about it) and it's cured a few people online of T (that's really a generous "opinion") so can I have it?"

He would first, laugh at me, then look it up in his drug encyclopedia, see the side effects and it be a hell no answer to me.

I would feel like a total idiot asking for this drug- dangerous drug, because apparently it cured a couple people in a forum.

People. .really..get real...no offense..

Show me some studies I could provide to my doctor! Then maybe that will carry some weight..unless @Mpt or @Dannyboy wants to call him..maybe that will help.

 

[rubyroseware]

What is trobalt? I've heard the word thrown around a lot. Can I ask my doctor for it (UK)?

 

[noisebox]

The person they interviewed said "there's not a tablet" for it, but in the case of James Ivor Jones, why were his physicians so clueless that they didn't even suggest Trobalt? Mr. Jones must have been at the depths of despair and then only to be told, "Live with it."

Because this is the uk, they don't give a damn, they don't give anything. I doubt he he even got to ENT or therapy in 6 months. I know I didn't. The waiting lists are very long.

 

[noisebox]

What is trobalt? I've heard the word thrown around a lot. Can I ask my doctor for it (UK)?

You can ask all you like here, but you won't get it. They won't prescribe a drug unless approved by NICE for a particular condition. Sorry but dream on. I couldn't even get tame melatonin here as I'm not 55 or an autistic child.