Acoustic CR® Neuromodulation: a New Treatment for Tinnitus

#151
Sorry I should have said I haven't timed how long the residual inhibition lasts because I don't like checking for my tinnitus but I have been these last 3 days just out of curiosity. However I think the RI lasts minutes maybe even 10 mins
 
#152
Aisling said:
Hi guys
Just wanted to let you know I am also on the trial. Steve did you tell them about the thing with your speech. I will keep everyone updated with my experience.
Click to expand...
Hi Aisling,

I told them and they didn't seem to see any link at all, possibly just a long, mild cold giving me a dry mouth. Are you doing the trial at Nottingham? I got a re-calibration last week and asked a load of questions. Apparently they don't expect anybody to get any residual inhibition from the device, though as some of the tones are fairly near your T tone it's possibly going to happen. I agree with you on the usage, I really don't like to feel of the earphones sitting so deep in my ear, it is itchy and unnatural feeling.

The previous calibration I had I found it really difficult to pinpoint my tones, I get a lot of fluctuation in their quiet, soundproofed rooms. The program of the device really annoyed me and I had to stop using it until last weeks appointment. It's been fine since though. I still wouldn't say I've had an improvement, my tones seem to have moved in pitch but not to any real benefit. There's still plenty of time though, I get my second EEG in early June and will find out what treatment group I'm in. I could still be placebo at this stage.
 
#153
If not for being 2% over on the anxiety scores I would have been on this trial with you guys!

YES I am still miffed about that :(
 
#156
I would've been well annoyed if I'd given up a day for them to be told I'm not suitable. Still, it means you get to go a different trial I suppose. Difficult thing is that these treatments all cost such a lot of cash and won't necessarily work. No way would I spend the money on this that they're asking.
 
#157
I was well annoyed Steve. Particularly because I was so close and he had told me to 'aim high' on the answers to the anxiety questions if I was in doubt. And then to fail by 2%...... And then to just be tipped out onto the street in tears, literally.

That was the treatment I had always wanted since getting T. Its worth such a lot of money (4.5k). I really wanted to get my shot at trying it as there's no way I can afford it.

You're lucky to be able to try it for free and then if it works even luckier!!!
 
#158
Well, if I can nail down their system I can produce a similar treatment tone for you. After looking into it I need more info, which I'll get when I know which group I'm in, though I'm learning more all the time. It won't be exactly the same but it'll be something to try at least. Can you identify your T pitch?
 
#159
I cant easily identify it, no. It moves and sometimes its a whistle and sometimes a different sound and static waves.

Will you give TTers a cut down price Steve? :)
 
#160
I even stretch to a 100% discount.

You may not actually have been suitable for the treatment if you can't identify a tone. It works on the theory that neurons are misfiring that are associated with different tonal areas in the brain. If yours moves and changes I can't see how the principle of the device can work, you could set it to one area and find that the next day it needs to be reset to another, then equally find that you can't set it another day because you can't identify a pitch. Have you had an audiogram? It may be that it could be calibrated to a hearing loss zone, however small. I'll ask about that next time I'm in with them.
 
#161
I know that stuff, I investigated it in the beginning :) I did ask about my pitch matching and he said it could be difficult but you have to go at the loudest tone first. I think I could identify at least one so I would've got on it. I've heard others who are part of the trial say that it was hard for them to do pitch matching too.

Right, so when you are ready to do my treatment I'll come to York - its not far for me :)
 
#162
My first patient, I will be happy to operate. All you need is an Mp3 player and earphones that are comfortable to use. I reckon that by mid June I should have all the info I need.
 
#163
The therapy with CR-Neuromodulation was discussed in a German Forum intensively. The result is disillusioning: just a few users of the Neuromodulator had a relief, but none healing. It costs altogether about 3500 €. Expensive snake-oil, isn't it?



@ jibs
"Tone 1 will be (tinnitus frequency - 900hz)
Tone 2 will be (tinnitus frequency - 400hz)
Tone 3 will be (tinnitus frequency + 400hz)
Tone 4 will be (tinnitus frequency +1500hz)"

We found instead (6 different samples, 3 persons, who had this neuromulator, trusted) in an interval of 2100 till 5600 Hz tinnitus frequency)
Tone 1: f1 = 0.77 t
Tone 2: f2 = 0.9 t
Tone 3: f3 = 1.1 t
Tone 4: f4 = 1.4 t
where t is the tinnitus frequency. For example: imaging your tinnitus frequency is 5000 Hz, it comes to:
Tone 1: 3850 Hz
Tone 2: 4500 Hz
Tone 3: 5500 Hz
Tone 4: 7000 Hz

"In regards to volume, it should be just high enough to mask your tinnitus."
It should not be higher than 65, 70 dB, as you might damage your ears even more taking a higher loudness.
 
#165
Hi Steve yeah I'm in Nottingham. My freq is 200hz I also found it difficult in their rooms to identify it. Mine is a hum. Maybe I don't get the residual but I'll keep checking.
Sorry Louise but keep in mind what's meant for you won't pass you so maybe this new trial you are on will help you more.

That's disappointing about the German forum but I think with tinnitus treatment they are never going to find a cure for all I think some treatments work for some people.

Fritz with the people it worked for in Germany what was the cause of their tinnitus.
 
#166
@Louise As soon as I get the lightning conductor and neck-bolts delivered we're on.

@Fritz That's really interesting. I'm being matched to within 500Hz, guess it keeps things simple. What software did you use to detect the frequency of the device? I produce music but the software I use won't detect in Hertz, just musical notes.

I think that the device is very expensive considering it works on a very simple principle. It just stimulates regions of the brain that respond to sound, once you know and understand the research behind it you can make it yourself with an iPod (I don't pretend to understand very much of it). The main thing is having the knowledge and somebody to help you match your frequency. I'm not personally convinced that it works at its best as it is, the sound intervals are not natural to our ears or brains and can seem irritating. As we are used to a western - equal temperament - musical scale, maybe using actual notes would be more pleasing.

@Aisling Your frequency is really low, what do they say they are matching you to? I'm matched within 500Hz (Currently left ear 4500Hz, Right ear 5000Hz), when I asked that's what they said used as the intervals. When you get as low as 200Hz, a jump to 500Hz is a huge difference to our ears (Roughly a major 3rd an octave up, or 16 notes on a piano).
 
#167
Hi Steve

The device goes down to 150hz so from 500 we went down in hundreds and I matched it to 200hz. You prob think my tinnitus is not that bad but believe me it is still annoying. I think this is worth trying even if its base on simple principles
 
#168
I don't believe in 'What's meant to be' etc I'm afraid Aisling and the trial I'm on is just a simple study by a PHD student for her project, nothing with the resources behind it that the ANM trial has.

I've never heard of anyone having a T pitch as low as 200hz.

Steve - its the Research that cost them the money and what people are paying for, not just the actual MP3 player.
 
#169
Sorry Louise I didn't mean to offend you. I do truly hope you find relief someway. Mine is low prob because it was not noise induced. It sounds like an idle deisel engine, a hum.
 
#170
No probs Aisling, thanks.

Yours is an unusual one, most I've heard of seem to be high-pitched whining or 'eeeee' or electrical high-pitched. How did you gets yours - do you know?
 
#171
"Fritz with the people it worked for in Germany what was the cause of their tinnitus."
Have to look, will take its time.

"I think that the device is very expensive considering it works on a very simple principle. It just stimulates regions of the brain that respond to sound, once you know and understand the research behind it you can make it yourself"
Much too expensive considering the tasks the device has to do. Simple and cheap components, a mikrocontroller together with an audio generator produces frequency and amplitude programmable sine waves, amplifies them to be hearable in headphones. Not to forget the charger for battery, cable and the box for that electronics and battery itself. Why so expensive? ANM justifies this with the costs of research and development, and of course - it's made in Switzerland, known for extreme quality and precision, and such precious products will have their price, maybe somewhere goldandstudded with diamonds, hidden invisible inside that beautiful little box.

Real understanding with that research results of Tass et al requires high knowledge of neuroscience and physics, that may be a problem.

"I'm being matched to within 500Hz, guess it keeps things simple."
If your tinnitus frequency is in a high region below 10000 Hz and you don't have hearing impairment at that individual 4 frequencies, your Tinnitus should be tonal and would indeed things keep simple

"What software did you use to detect the frequency of the device?"
You mean the frequencies of the 4 tones? It is the easiest thing in that kind of analysis. Just make a spectrum analysis performing sound analysis on the spectral content of the original neurostimulator sound, the graph (FFT) will show the (x-Axis) frequency versus intensity (y-axis). You will see 4 peaks, measure the values of that peaks via cursor, and you get your frequencies.
As far as I can remember I used NCH.

"As we are used to a western - equal temperament - musical scale, maybe using actual notes would be more pleasing."
Exists.
"Christo Pantev and his team at the University of Muenster took each patient's favorite music and removed from it the audio frequencies that matched the individual's tinnitus. In other words, this so-called "notched" music contained no energy in the frequency range surrounding the individual's tinnitus frequency.
After one year of listening to their favorite notched tunes, test subjects reported a significant decrease in the loudness of their ear ringing, compared to a matched group of tinnitus patients who listed to placebo (unaltered) music."
 
#172
Louise said:
I don't believe in 'What's meant to be' etc I'm afraid Aisling and the trial I'm on is just a simple study by a PHD student for her project, nothing with the resources behind it that the ANM trial has.

I've never heard of anyone having a T pitch as low as 200hz.

Steve - its the Research that cost them the money and what people are paying for, not just the actual MP3 player.
Click to expand...
I understand and I can appreciate that, I've not long since finished reading Ben Goldacre's book 'Bad Pharma' that gives a great insight into the whole medical system - more on the drugs side than this sort of treatment, well worth a read if you haven't already. This technique though is devised from electrical brain stimulation for a parkinsons treatment so a lot of the leg work was already done for them. They took the theory and replaced electrical stimulation with acoustic stimulation. It is extremely expensive to test and bring a treatment to market and it also doesn't help that the consultants have such a high hourly rate. This device does seem a bit rushed though, I mean it's on sale when they don't have a reliable study yet, the people who are paying for it are essentially still guinea pigs. I don't begrudge a company a profit but £4.5k is pretty steep considering the simplicity of the theory and system (well, not simple, but borrowing from established research on neuroplasticity, neuromodulation and tonotopic organisation).

@Aisling I also have a low rumble, not sure if it's an increased awareness of blood flow, don't hear it all the time. I just put it down to the mechanisms of tinnitus that I hear all sorts of noises.
 
#173
I understand your points Steve and I think the Big Pharma thing is disgusting. But, ANM believed in this product but didn't have the funds to back it up with clinical trials so they sold it, believing in it, and now have the funds and are using them to do these properly controlled trials. That's laudable in my book. They could've just kept the money from the initial sales and kept on selling it without spending any on the trials. Of course if the trials are a success it will increase the sales. But if they are not......

Anyhow, what do I know. And I'm not even on the trials :( OK I WONT MENTION THAT AGAIN!!!

I will just be a bystander on this thread now and follow the progress of ones who ARE on the trial. Good luck you ones and try to be positive and feel lucky that you have 4.5k of free treatment!!!

Over and out.
 
#174
@Louise Ah well, on the bright side I'll be able to copy the therapy for you. With all the data on here and from the trial so far I think I should be able to pretty much replicate the process.

I agree, it is good that they are doing the research, I wouldn't even like to think of how much it's costing them to do it. It could be delivered a lot cheaper though by attending any normal audiologist for pitch matching and setting the tone levels, then downloading a tone pattern for an Mp3 player or using an app / program that generates the tone from a website.

They are making the therapy a much higher cost by having a proprietary device that is useless without them re-configuring / supporting it. I personally think they are being greedy. If they made it cheaper they could have potentially made a lot of money by getting approval to train audiologists and deliver it on the NHS and other healthcare systems - if the trial shows it to be effective of course.
 
#176
Assomeone who paid at The Harley St Clinic (didnt work for me ) can Ipass a comment.
You have to admire their "Balls" for getting Involved In a trial. I cannot say how many units they are selling obviously I do not know,but there were allways people there when I went.So talk about make or break,If this trial fails thats basically the end of thier business model.This Harley st practice is a private business with I think 2 directors.Yes they sell hearing aids etc but I think acrn is there main thrust.
 
#177
Hi Louise I'm am really annoyed for you that they told you to score on the high side. It's silly not to include you because of 2%.

I know exactly how I got my tinnitus I was having my baby in sept and the guy did the epidural wrong which left me with a spinal leak which subsequently was left untreated! It's really annoying.

I don't mind using the device at all if this works I think people with tinnitus will find it easy to use.

My right ear has more of an eee I described it like the sound of a flat line of a heart monitor you know like you see on the TV when people have died. They didn't program that one because my hum is so loud it's hard to match my right ear
 
#178
Great to get the feedback on this trial and those samples of the sound devices - thanks for that guys. Can't say that I'm convinced it would work for me (at least not enough to fork out the cash) but will be interesting to find out the results of the trials - whenever they become available.
 
#179
Steve said:
@Louise Ah well, on the bright side I'll be able to copy the therapy for you. With all the data on here and from the trial so far I think I should be able to pretty much replicate the process.

I agree, it is good that they are doing the research, I wouldn't even like to think of how much it's costing them to do it. It could be delivered a lot cheaper though by attending any normal audiologist for pitch matching and setting the tone levels, then downloading a tone pattern for an Mp3 player or using an app / program that generates the tone from a website.

They are making the therapy a much higher cost by having a proprietary device that is useless without them re-configuring / supporting it. I personally think they are being greedy. If they made it cheaper they could have potentially made a lot of money by getting approval to train audiologists and deliver it on the NHS and other healthcare systems - if the trial shows it to be effective of course.
Click to expand...

Get those screw-drivers out Steve - I'm depending on you!!

It must be costing them a fortune to do the research. Has to be. I know that they sold the devices to get the money to fund it because of their belief in it.

I'm really surprised you're advocating normal audiologists supply this treatment. I actually think they do in Germany, and do you know I think that's why they get sh*te results! Based on the audiologists I've seen here - NO! I personally wouldn't trust any NHS audiologists I've been involved with.

I dunno about the greed thing, the consultancy costs are too high. But they are on Harley St - its to be expected.

But really, did we ever think a treatment that would stop or ameliorate T would be cheap???
 
#180
carlover said:
Assomeone who paid at The Harley St Clinic (didnt work for me ) can Ipass a comment.
You have to admire their "Balls" for getting Involved In a trial. I cannot say how many units they are selling obviously I do not know,but there were allways people there when I went.So talk about make or break,If this trial fails thats basically the end of thier business model.This Harley st practice is a private business with I think 2 directors.Yes they sell hearing aids etc but I think acrn is there main thrust.
Click to expand...

I agree entirely. Entirely.
 

Log in or register to get the full forum benefits!

Register

Register on Tinnitus Talk for free!

Register Now

Similar threads

T
Reduction of Tinnitus with Treatment for Digestive Issues — Permea Regul Fort
Replies
3
Views
624
Alternative Treatments
Nick47
N
re-animator
Acoustic Trauma-Induced Tinnitus from Shooting AK-47 at a Gun Range
Replies
20
Views
1K
Introduce Yourself
Tim123
T
N
The Efficacy of Incobotulinum Toxin A Injections for Treatment of Tinnitus
Replies
5
Views
2K
Research News
CGB
C
V
New Tinnitus Tone (Beeping/Chirping) After a Cold
Replies
3
Views
281
Introduce Yourself
Viciousears
V
delta784
Recently Developed Loudness Hyperacusis After Acoustic Trauma — Worsened Tinnitus/Hyperacusis by Methylprednisolone
Replies
16
Views
1K
Support
delta784
delta784
Top Bottom
Back
Forums
Members
Donate
Menu