MuteButton

[Paulmanlike]

I've had my tinnitus for years, I've blown money on something called the TinniTool that was £300, and over £200 on scams. After that, I realised that enough was enough and there was no treatment.

I was almost sold ACRN, again wasted money on the Tinnitus Clinic, something like £170 and that was just for a consultation for 30 minutes. They deemed me not suitable for ACRN and wanted me to try Levo - fuck that £4K just to get used to it, I wanted a reduction or elimination of it for that price.

If anybody is new to tinnitus - be aware that people will quite happily take your money.

It's tempting to part with money on promises that it will return your noisy world to a quiet place, but accept that when a treatment does come to market it will be headline news.

This is why, I am determined to sit back and find evidence before shelling out on this treatment. Neuromod seem like a genuine bunch but so did the guys behind ACRN, find me 10 'success stories' on that.

I don't want to dampen hopes of people, but the long term sufferers of tinnitus, will know what I'm talking about. Perhaps the newbies not so much. Regardless I wish Neuromod the best of success, it's also important to remember that the trials have been conducted by the developers of the device - it needs to be peer reviewed and the evidence needs to come from long term members on here that I trust before I buy it.

If this treatment fails, then it'll be years before a potential new treatment comes round (FX-322, or other drugs that take years to reach the market).

On a positive note, these guys have experts in the field, have attracted millions in investment and have produced good results. I am cautiously optimistic.

 

[dayma]

If the thing really works and starts rolling I wouldn't be surprised if there was going to be a huge waiting list.

Depends on cost and inventory. Since insurance is not going to cover the cost of the device and other services it may not be realistic for a good amount of people.

They are sitting on a good amount of these devices from the last roll out.

My 2 cents...

 

[Agrajag364]

We are so far at the bottom of the healthcare ladder nothing would surprise me. We are almost routinely scammed, robbed and treated like absolute shit.

There are many health conditions out there where the patients are treated like absolute shit. Believe me.

 

[_Patrick_]

If this treatment fails, then it'll be years before a potential new treatment comes round (FX-322, or other drugs that take years to reach the market).

We don't know that. Maybe the treatment fails because the technology needs some fine tuning. There are so many parameters that nobody knows exactly what's the optimal way to use it.

Everyone is doing neuromodulation these days, so there has got to be something going on around that tech, we just need to harness its potential.

 

[Alex Matyjasek]

Depends on cost and inventory. Since insurance is not going to cover the cost of the device and other services it may not be realistic for a good amount of people.

They are sitting on a good amount of these devices from the last roll out.

My 2 cents...

Here we are waiting for the moment of thruth. Time will tell. This is taking forever!

 

[Bndsmheowqhe]

We don't know that. Maybe the treatment fails because the technology needs some fine tuning. There are so many parameters that nobody knows exactly what's the optimal way to use it.

Everyone is doing neuromodulation these days, so there has got to be something going on around that tech, we just need to harness its potential.

I think this is the key thing to remember. Three separate organizations have been developing this technology independent of one another. There must be something to it.

 

[GlennS]

If this treatment fails, then it'll be years before a potential new treatment comes round (FX-322, or other drugs that take years to reach the market).

Based on what I've absorbed so far, I really don't think this treatment is going to go down as a proven failure. I think it's going to fall into a gray area where it's going to be hard to predict in advance whether it's worth the money because of the mixed results. That gray area is going to include people across the spectrum, those who claim the tinnitus went away completely, those who felt it went away enough to be worth it, didn't go away enough to be worth it, or didn't go away much at all. But for those who DO respond to it, I'm sure it will seem like a godsend.

 

[Heinrich_S7]

Guys, for the vast majority of us it's going to either silence it or immensely reduce it. Cheer up, the trial results were fantastic.

Things are finally beginning to turn around for us.

 

[Fabrikat]

I was almost sold ACRN, again wasted money on the Tinnitus Clinic, something like £170 and that was just for a consultation for 30 minutes. They deemed me not suitable for ACRN and wanted me to try Levo - fuck that £4K just to get used to it, I wanted a reduction or elimination of it for that price.

It's pretty outrageous that the Tinnitus Clinic have gotten away with emptying people's wallets for useless treatments.

They seem to somehow present an acceptable face because they provide legitimate audiologist services, but in fact they're no better than the worst tinnitus scammers. They're charging huge fees for useless stuff. Where is the oversight for this sort of behaviour?

 

[GlennS]

Guys, for the vast majority of us it's going to either silence it or immensely reduce it. Cheer up, the trial results were fantastic.

I'm on the edge of my seat like everyone else but I'm waiting for Neuromod to post results of the trial they're running now before I reach that level of optimism.

I just got the sense that the last trial was not quite definitive in that they were still experimenting with different parameters of the stimulation and constraining the types of patients that were allowed to participate. Now hopefully they have something to run with. Assuming they are broadening the types of patients and applying lessons learned with the treatment regimen, the trial they're running right now should be much more significant. It hasn't really been made clear how they're doing this trial but common-sense would indicate that they are going to at least stop trying things that didn't work last time and maybe use the extra trial "slots" to bring in more patients...like, um, those who have had tinnitus for longer than their artificial cutoff period.

 

[Paulmanlike]

We don't know that. Maybe the treatment fails because the technology needs some fine tuning. There are so many parameters that nobody knows exactly what's the optimal way to use it.

Everyone is doing neuromodulation these days, so there has got to be something going on around that tech, we just need to harness its potential.

So if this fails or the results don't build up on here what next do we have to look forward too? Regeneration is years off and even if that's successful we don't know if this will eliminate tinnitus. Any new drug that may be developed by Tzounopoulos or Rauschecker takes years to reach market and even if it's successful (1/10 chance).

That's if they can work out what drugs may help it.

This is why there is much hope for this treatment because looking at it, if this fails we are a long way off to a treatment or a cure. There's been hope in other modulating techniques over the years (rTMS, VNS, etc) that have never come to fruition or standard market practice.

I really want this to be a success, but I have followed tinnitus research over the years and there's been nothing but big fat disappointments.

I've been here before with the excitement and I feel it's best not to get too hyped about this.

If they are successful and it helps me, I will personally be writing to Ross O'Neill calling him a hero and showing my utter gratitude, but it just feels like a dream now.

 

[Heinrich_S7]

I'm on the edge of my seat like everyone else but I'm waiting for Neuromod to post results of the trial they're running now before I reach that level of optimism.

I just got the sense that the last trial was not quite definitive in that they were still experimenting with different parameters of the stimulation and constraining the types of patients that were allowed to participate. Now hopefully they have something to run with. Assuming they are broadening the types of patients and applying lessons learned with the treatment regimen, the trial they're running right now should be much more significant. It hasn't really been made clear how they're doing this trial but common-sense would indicate that they are going to at least stop trying things that didn't work last time and maybe use the extra trial "slots" to bring in more patients...like, um, those who have had tinnitus for longer than their artificial cutoff period.

The severity of people's tinnitus also probably plays a huge role.

 

[Alex Matyjasek]

I found this on Neuromed's web-page. This is from there clinical trials. There's one thing that worries me. The eligible frequency range is between 2 to 8 kHz? You can download the whole file on their page.

 

[_Patrick_]

So if this fails or the results don't build up on here what next do we have to look forward too? Regeneration is years off and even if that's successful we don't know if this will eliminate tinnitus. Any new drug that may be developed by Tzounopoulos or Rauschecker takes years to reach market and even if it's successful (1/10 chance).

What I meant, is that if this fails, they might bring it back to the lab to make it work. They won't just throw the baby out with the bathwater, there might still be some changes and improvements to be done that could make it work.

And btw, that's what I believe they will do nonetheless, to make sure they get a better coverage than the alleged 80%.

And if none of it works anyway, then we will raise awareness like never before, and we will get a cure within 5 years, just as Dr. Rauschecker said we would!

 

[Paulmanlike]

What I meant, is that if this fails, they might bring it back to the lab to make it work. They won't just throw the baby out with the bathwater, there might still be some changes and improvements to be done that could make it work.

And btw, that's what I believe they will do nonetheless, to make sure they get a better coverage than the alleged 80%.

And if none of it works anyway, then we will raise awareness like never before, and we will get a cure within 5 years, just as Dr. Rauschecker said we would!

He was saying that years ago. People totally went off the wire when he allegedly said "help is on its way", he never said that, he said he wish he could reply to emails saying help is on its way.

Also, there was talk on ACRN helping 7/10 people, where are those people?

Not being negative, but I believe we've got to be firm and vigilant on new treatments that are explained with science that means nothing to the layman.

Even if Rauschecker works out the exact mechanism of tinnitus and what keeps it going, there still needs to be a way to develop a drug or treatment that can reverse or stop it. That could take more years.

I am hoping though that if Neuromod really believe in this science, that it could be brought back to the lab with further exploratory work to increase efficacy, but for starters we still don't know if this does actually reduce or stop the volume, remember 500 people out of millions worldwide, this could mean anything.

I would just like to add I found a comment fro someone on Facebook who stated it did nothing for them in 2016, Clare (who recovered completely) spoke to 2 people who got no improvement, and there was multiple statements when it was first released that it did nothing. Clinical trials performed by the developers of the treatment mean nothing to me until they are peer reviewed. Even then I will be waiting for the evidence base to build up (if it ever does) from long term members of this forum and if it attracts more media attention. Until then, I will sit back, deal with it like I have been doing and watch it unfold.

 

[_Patrick_]

He was saying that years ago. People totally went off the wire when he allegedly said "help is on its way", he never said that, he said he wish he could reply to emails saying help is on its way.

He said in his last interview that if we raised enough money and created a dedicated tinnitus research center, we would find a cure within 5 years. If not, he hopes within 10 years but he isn't sure it might be enough.

 

[jmasterj]

I found this on Neuromed's web-page. This is from there clinical trials. There's one thing that worries me. The eligible frequency range is between 2 to 8 kHz? You can download the whole file on their page.

View attachment 26215

I wouldn't read too much into that. They have to set up parameters for the research and peer review.

 

[jmasterj]

I think it is in everyone's right to be skeptical, but we know this has worked for some. @Clare B has had great success and @kelpiemsp has had very positive results from the University of Minnesota device. Hubert Lim is from the University of Minnesota who was in charge of the study kelpiemsp was in is now working with Neuromod. He has taken his knowledge to them as well.

People keep bringing this device up when it failed in 2016. Neuromod took responsibility and pulled the device from the market and admitted they were wrong. How many companies would truly do that? Look how many sham devices are still out there today taking people's money because of the suffering of tinnitus.

This may not be the cure all for everyone, but it has been the most positive hope we have ever had. I know Clare mentioned that the people that it didn't work for were older. It is possible that as we age the neuroplasticity of the brain isn't as effective. It is also possible that they didn't follow the guidelines for the trial. We really don't know that. Frequency Therapeutics may be the ultimate fix someday, but that is several years off and there is no guarantee it will work for tinnitus.

 

[Paulmanlike]

He said in his last interview that if we raised enough money and created a dedicated tinnitus research center, we would find a cure within 5 years. If not, he hopes within 10 years but he isn't sure it might be enough.

He would never know that for sure.

 

[GlennS]

I wouldn't read too much into that. They have to set up parameters for the research and peer review.

That text sounds like it's leftover from the last trial. Someone should ask them if they are still constraining patients the same way.

 

[Alex Matyjasek]

I wouldn't read too much into that. They have to set up parameters for the research and peer review.

Yes, ok, but what about the sufferers whose tinnitus frequency is higher than 8 kHz? It's not suitable? I guess you're knocking a lot of patients out just because of this 'little' detail. That would be a bummer for me and for a lot of people! But I also seem to remember that on the interview they stated that it isn't an issue?! Am I wrong?

 

[Paulmanlike]

Yes, ok, but what about the sufferers whose tinnitus frequency is higher than 8 kHz? It's not suitable? I guess you're knocking a lot of patients out just because of this 'little' detail. That would be a bummer for me and for a lot of people! But I also seem to remember that on the interview they stated that it isn't an issue?! Am I wrong?

"The tonality, the intonality, doesn't matter" - Ross O'Neill

 

[Heinrich_S7]

@kelpiemsp has much worse tinnitus than I do. IIRC he could only hear his when he pressed his ear up to his pillow? Isn't his tinnitus above 75 dB? Mine sits around 30-35 dB and if his was brought down that much then this device should knock mine below the threshold of hearing at 20 dB.

Again, severity probably plays a huge role in the outcome. Those of us with mild tinnitus should be completely cured.

 

[Watasha]

And if none of it works anyway, then we will raise awareness like never before, and we will get a cure within 5 years, just as Dr. Rauschecker said we would!

@_Patrick_ I don't think we should wait on Neuromod's success or failure to raise awareness, I think we should start right this very minute. We aren't as likely to get that cure within five years resting on our laurels. He says so himself how challenging an environment this field is for research and the patient community needs to make some noise. Let's do it, starting today.

 

[jay777]

When you try this device you get bermuda triangle syndrome.

 

[Bam]

know Clare mentioned that the people that it didn't work for were older. It is possible that as we age the neuroplasticity of the brain isn't as effective. I

Or they were at the worse end of acceptable hearing loss. If you have severely compromised ears and dodgy hearing I think you would do well to be skeptical about this device.

 

[Bam]

When you try this device you get bermuda triangle syndrome.

Maybe Ross sat down all the trial candidates and clearly explained the rules beforehand......we'll either cure you or make you disappear. Take it or leave it you desperate *****?!?

 

[Helheim]

When you try this device you get bermuda triangle syndrome.

Uh, what?

 

[Alex Matyjasek]

"The tonality, the intonality, doesn't matter" - Ross O'Neill

So frequency doesn't matter? Getting me confused.

 

[PDodge]

When you try this device you get bermuda triangle syndrome.

That's a good thing.