Acoustic CR® Neuromodulation: a New Treatment for Tinnitus

[Louise]

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.

Yeah David and do you know that they are trying to get it available on the NHS so that you wont have to fork out the cash.

I personally really hope this thing works, (for some types of T), and that the NHS are FORCED to take it on board. At least then, at last, some T sufferers will be getting a service from the NHS that they have helped pay for.

 

[Louise]

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

Thanks Aisling. I was annoyed too. I did put this in an email to the head of the trials and when he finally could be bothered to reply to me (after I had to ring up and get his secretary to prompt him) he said that everyone will have been told to score high and yet they were within tolerance. How does he even that is true AND even if they were told how does he know that we all interpreted that instruction the same?

I bet you could smack that guy who did your epidural wrong right in the ear so that he too has tinnitus. That is really disgusting.

 

[Aisling]

That's for sure Louise. I am even more annoyed that it could have been prevented if they treated the spinal leak. Absolutely ridiculous to go in for a baby and end up with tinnitus. I prob would have been safer with a home birth!

Not so sure bout that residual inhibition Steve I didn't get it 2 nite anyhow after 3 hours straight on the device. I was staying in my mother in laws house at the weekend maybe the sounds in her house masked the tinnitus better.

Did everyone see the stem cell research on the news tonight it was from human skin. I think it was Oregon university. I really hope a cure for this condition comes in our lifetime

 

[Steve]

Without a doubt they're putting their necks on the line and I totally applaud them for that. Louise, I have met some absolutely useless audiologists and consultants on the NHS with no knowledge of the condition. But, if they have the software and training it should be simple to deliver the therapy, the main thing will probably be the time they're allowed to do it in.

The way it is set up at the minute I can't see it being used on the NHS though, it takes too many appointments of long length - perfectly suited to £120+ an hour consultants. 100 patients on the treatment = £450k of turnover, nice business if you can get it - or - £450k of NHS budget; I think that the NHS rank us pretty low as patients and can't see the current costs being viable for them. Just imagine how many people nationwide would go for this new treatment if they took it on.

I also think they should be doing a little more with the trial (though it would cost more) and using a combination of TRT with it for some. My biggest thing so far is the increased awareness I have, they expect your tone/s to change and I've found this pretty unnerving. It's like I've lost all of the habituation I had and I'm starting as a new patient - does anyone else on the trial have this experience? I've had it for around 10 years so it could be down to that, @carlover, as a long time sufferer, did this happen to you?

Aisling, I asked about that and they said they don't expect you to get any Residual inhibition.

 

[Aisling]

When are you back in nottingham Steve?

 

[Louise]

I think that the NHS rank us pretty low as patients and can't see the current costs being viable for them

Well you've hit the nail on the head there Steve - we are pretty low on the NHS priorities as patients. That's the problem. I hope this thing is proven to work and then pressure can be put on them, maybe via sites like this, to damn well provide the treatment.

This will be contentious but, why do they spend thousands on IVF?
I've paid my dues and I deserve some treatment for a condition which has befallen me.

 

[Steve]

When are you back in nottingham Steve?

My next appointment (where I find out which treatment group I'm in) is 5th June.

@Louise I totally agree with you, and it probably is controversial. I think that a health system should primarily focus on illness. You could argue about the psychological effects infertility can have on somebody but adoption is a viable alternative to IVF, we have no alternative but medical treatment and help of some type. As a system that we've paid into to insure us for bad health it massively under-performs for tinnitus.

 

[carlover]

Hiya steveh ,never got that im glad to say.After using the equipment for a few hours it turns my jet engine type soud into seashell ssssshshhhhhhhhh and its more bearable but only for a couple of hours.

 

[Aisling]

Oh that will be interesting to find out Steve I'm not really noticing much. I'm back 23rd may then 6th June.

I agree with you both on the health system!

 

[Louise]

Hiya steveh ,never got that im glad to say.After using the equipment for a few hours it turns my jet engine type soud into seashell ssssshshhhhhhhhh and its more bearable but only for a couple of hours.

Just thinking Pete.... do you think there's any value in you going in for a re-tune? I mean it does have some effect on your T so maybe now could be a time to get it re-programmed?

 

[Louise]

My next appointment (where I find out which treatment group I'm in) is 5th June.

@Louise I totally agree with you, and it probably is controversial. I think that a health system should primarily focus on illness. You could argue about the psychological effects infertility can have on somebody but adoption is a viable alternative to IVF, we have no alternative but medical treatment and help of some type. As a system that we've paid into to insure us for bad health it massively under-performs for tinnitus.

That will be interesting Steve to find out what you've been on, placebo or real.

I absolutely agree with what you've said re: IVF. I would also add that I personally know someone who was allowed 2 IVF treatments on the NHS even though beforehand the tests proved there was nothing wrong with either of them. Both attempts failed (and cost the NHS, ie. us, a fortune) then a few months later she had some acupuncture and got pregnant.
How is that fair when the NHS wont even pay for a sound generator for me - someone who had to stop working due to their health condition? Who makes these rules? Honestly it makes my blood boil.

Anyway I'm pretty sure this is off topic I'd better keep quiet!

 

[david c]

Hi good to hear about the updates on these trials

Completely agree with UK-based posters re-inadequacy of NHS health provision. If it's any use the 2009 Provision of Services for Adults with Tinnitus NHS Guide stated this about sound generators:

The range of sound enrichment generators as well as assistive listening devices should be available, free at the point of delivery, to these patients, who will be seen by skilled staff at the first level community based audiology clinic.

There's a lot of rationing of white noise generators going on I know (personally I found a sound machine more useful anyway). But for anyone UK-based who wants them it's worth quoting this to your audiologist and asking why he/she is failing to comply with best practice guidelines.

 

[Louise]

Thanks David. That's going to go into a letter of complaint I will write. I directly asked for one and she told me no. I would also question the term "skilled staff" but I wont put that in the letter

 

[carlover]

Just thinking Pete.... do you think there's any value in you going in for a re-tune? I mean it does have some effect on your T so maybe now could be a time to get it re-programmed?

Hi Louise thanks for the thoughts. During the first 12 months I went back and retuned It 6 times only slightly every time,Its absoloutely spot on ,the T hasnt moved ,and actually you can be out by 500 (is it HZ ir Db or something) and as I got shown(heard) that is a wide parameter. If I went back agin its another £150 and i dont think I would need to change it anyway.

All the best,Pete

 

[Steve]

I put an Mp3 on the do it yourself guide thread, made it yesterday. It seems to work for me so far, may be useful for anybody not on the trial.

 

[Louise]

Hi Louise thanks for the thoughts. During the first 12 months I went back and retuned It 6 times only slightly every time,Its absoloutely spot on ,the T hasnt moved ,and actually you can be out by 500 (is it HZ ir Db or something) and as I got shown(heard) that is a wide parameter. If I went back agin its another £150 and i dont think I would need to change it anyway.

All the best,Pete

I see what you mean Pete - no point in retuning if the T hasn't changed at all

 

[Louise]

I put an Mp3 on the do it yourself guide thread, made it yesterday. It seems to work for me so far, may be useful for anybody not on the trial.

Think I might have me a trip to York soon......

 

[Steve]

Think I might have me a trip to York soon......

I think I can set up a couple of tone patterns fairly well balanced to your hearing profile, let me know if you want to pop across and we'll arrange something. I work from home a fair bit of the time so it shouldn't be too difficult to sort out.

@carlover It's interesting that it had a temporary effect, you say yours was more of a jet engine? So it's a broad frequency range rather than concentrated on a tone? I don't think that the principles of the device are suited to you if it is because it is supposed to be centred around a single tone, playing sounds either side of that. I imagine that if yours is quite a broad noise then the higher tones from the device would be part of your tinnitus noise rather than around it. Looking (as a layman) at their theory there should be tones either side of your tinnitus for it to work.

 

[carlover]

Steve ,they realised my problem and I can pinpoint it.Its not like an organ key mind you.Next time you sit in a plane listen ,you may think its a lot of tones but there is a central core to the thing.

 

[Steve]

Steve ,they realised my problem and I can pinpoint it.Its not like an organ key mind you.Next time you sit in a plane listen ,you may think its a lot of tones but there is a central core to the thing.

So they matched you to what you would call the fundamental, the lowest frequency.

Did you get any other effects, other than it being a bit more bearable straight after using? I've got worse with it, my ears aren't reacting very well at all, Aisling has also had a similar reaction to me. Did they tell you what to expect when you did the treatment, worse before it gets better?

 

[Roy]

I've just discovered this site after looking at the site for this CR Neuromodulation device. I'm not sure it would work that well for me as one ear is almost totally (but not completely) deaf, so, on the basic that if the ear can't hear the tones, they won't have any effect, I guess that ear will be unaffected. The T in that ear is a high pitch whistle but which varies rapidly in volume, as though someone had recorded it on a worn-out audio cassette with lots of dropouts! The other ear also has T, but a continuous tone (different pitch), and a "rushing" sort of noise, like water or an electric fan or similar. From what I read so far, that kind of sound wouldn't be treated by this system as it has to be tonal (but guess it would help the tonal part?).

 

[Debjj]

Without a doubt they're putting their necks on the line and I totally applaud them for that. Louise, I have met some absolutely useless audiologists and consultants on the NHS with no knowledge of the condition. But, if they have the software and training it should be simple to deliver the therapy, the main thing will probably be the time they're allowed to do it in.

The way it is set up at the minute I can't see it being used on the NHS though, it takes too many appointments of long length - perfectly suited to £120+ an hour consultants. 100 patients on the treatment = £450k of turnover, nice business if you can get it - or - £450k of NHS budget; I think that the NHS rank us pretty low as patients and can't see the current costs being viable for them. Just imagine how many people nationwide would go for this new treatment if they took it on.

I also think they should be doing a little more with the trial (though it would cost more) and using a combination of TRT with it for some. My biggest thing so far is the increased awareness I have, they expect your tone/s to change and I've found this pretty unnerving. It's like I've lost all of the habituation I had and I'm starting as a new patient - does anyone else on the trial have this experience? I've had it for around 10 years so it could be down to that, @carlover, as a long time sufferer, did this happen to you?

Aisling, I asked about that and they said they don't expect you to get any Residual inhibition.

Hi

Just wanted to say that I too had exactly the same initial response to wearing the device. I've had T.for 9 years, so I was fairly well habituated, but when I first started wearing the device I felt like I'd gone back to square one - I was constantly aware of my T.again all the time & very nervous/anxious about changes in frequency etc. I guess we get used to our own individual noises & any changes freak us out as much as at the start. I'm 6 months into wearing the device now & still very much aware of my T., but how can I be anything else whilst still wearing it? Sadly, my T.has not really improved but I remain positive & hopeful.

Hope this helps

Debs

 

[Steve]

Hi

Just wanted to say that I too had exactly the same initial response to wearing the device. I've had T.for 9 years, so I was fairly well habituated, but when I first started wearing the device I felt like I'd gone back to square one - I was constantly aware of my T.again all the time & very nervous/anxious about changes in frequency etc. I guess we get used to our own individual noises & any changes freak us out as much as at the start. I'm 6 months into wearing the device now & still very much aware of my T., but how can I be anything else whilst still wearing it? Sadly, my T.has not really improved but I remain positive & hopeful.

Hope this helps

Debs

Hi Debs,

That's really interesting, thanks. Are you on the trial or is it through the Tinnitus Clinic? Do they think that your reaction is normal?

I stopped using the device just over a week ago, it seemed to be making me worse every day I used it. I have improved since I stopped but I'm still in a much worse place than when I started. I find out next week which treatment group I'm in - I would've dropped out but I want to make sure that my experience is logged when it's this close to the end of the initial 3 month trial phase.

 

[Steve]

I've just discovered this site after looking at the site for this CR Neuromodulation device. I'm not sure it would work that well for me as one ear is almost totally (but not completely) deaf, so, on the basic that if the ear can't hear the tones, they won't have any effect, I guess that ear will be unaffected. The T in that ear is a high pitch whistle but which varies rapidly in volume, as though someone had recorded it on a worn-out audio cassette with lots of dropouts! The other ear also has T, but a continuous tone (different pitch), and a "rushing" sort of noise, like water or an electric fan or similar. From what I read so far, that kind of sound wouldn't be treated by this system as it has to be tonal (but guess it would help the tonal part?).

Hi Roy,

From what i understand they would probably do the tone match to your good ear based on the tonal sound, I guess that an audiologist would make the decision on your other ear based on what sound you can hear and if they could pitch match around that.

It's such a new treatment that it's hard to know the protocol and the patient profile; this is something that will hopefully come out of the study.

 

[Debjj]

Hi Steve

I'm on the tinnitus trials, I finish in August. They don't say if any of what you experience is 'normal' - that's the frustrating part. But hopefully at my last appointment I will find out more. The other thing I should say is, when I first started wearing the device I developed a dreadful humming noise, it was deep in my ears/head & would come on during the night. When I woke up each day it was absolutely awful, I was totally freaked out & I was scared I'd be stuck with it for good. I contacted the trials people at UCL (is that where you go?) & they spoke to Nottingham & told me to have a 2 day break from the device; it took weeks to settle though. But obviously I can't say if it was caused by the device or if it was something which would have occurred anyway - that's the thing with tinnitus isn't it, you never know what's going to change or happen from day to day. Anyway, I stuck with it & I'm still wearing it.

Are you going to continue on the trials? I'd say, stick with if you can, glad I did & ad I've said, I'm happy wearing it now & I do think it calms my T.

Debs

 

[Steve]

I'm not sure if I'll continue, the distress of using it hasn't been balanced out with any positive effects for me. I woke up in the middle of the night just over a week ago with a screaming noise in one ear, like a jet engine, seems too coincidental not to be linked to the device. That was what made me stop; it was getting worse anyway and that was the final straw.

Are you sure it's a positive effect you feel now, is it not just relief from having been a lot worse and improving from that? I'm at Nottingham, could've been seen earlier in London but as the train fares can be so high Nottingham was the best option.

 

[Debjj]

Hi

That must have been very frightening waking up in the night like that, I've woken before with some horrendous noises going on; the biggest fear is always - will it stay like it.

In answer to your question, no I'm not sure if its a positive effect or not. I went through a stage, when I'd been wearing the device for about 3 months, when my T.really started to feel a lot better, but then I went for a follow up appointment, they re-programmed it & it got really bad again. It is now back to pretty much how it was at the start of the trials, but there has been a lot of change over the time I've been wearing it & the one thing the trials people HAVE said, is that change is good (even if its change I don't like). I think the main thing to always bear in mind with this device is that it is a long term thing, it is not a quick fix and therefore we have to weigh up the risks of the changes we do/might incur.

 

[Louise]

I'm not sure if I'll continue, the distress of using it hasn't been balanced out with any positive effects for me. I woke up in the middle of the night just over a week ago with a screaming noise in one ear, like a jet engine, seems too coincidental not to be linked to the device. That was what made me stop; it was getting worse anyway and that was the final straw.

Hmmm, don't think I will take you up on your homemade device then Steve

 

[erik]

Doesn't sound like there are too many positive experiences with this device and that pretty much falls in line with those other devices like SoundCure and Neuromonics which have a spotty success rate at least amongst actual users (not that the company literature would say that).

 

[Viktor Salvatore]

Sound Cure disappointed me. So did Sound Therapy International. Sound Cure was difficult to listen to from the start as the weird modulated tones actually changed my Tinnitus to sound like them which was terrible and even worse and louder than what I already had. Sound Therapy International although pleasant to listen to in the beginning (symphany music and all) eventually became to the point where it was setting off the Tinnitus on a loud tangent....i'm back to listening to crickets and rainfall on my mp3 player which is for free and may even help more. So much for science.