Acoustic CR® Neuromodulation: a New Treatment for Tinnitus

#421
Reinier said:
But the difficult part of the day usually is in the afternoon.
Click to expand...
Interesting. Mine often ramps up in the afternoon, somewhere between the 2:30 to 3:30 range. I can't correlate it with food intake or activities. It just happens that way, and it's very noticeable as soon as it increases.

Steve said:
With every audio therapy they mention that the volume may go up sometimes so it's likely it can happen from time to time. There are also spikes that you may have gotten anyway. Was it after using the notched sound?
Click to expand...
Played audio notch on Friday, awoke on Saturday to moderate T, but then it just got worse and worse. I did listen on Saturday for maybe an hour or less to notched, and a couple hours of ACRN, but it was so bad that I had to go to mynoise.net and play the Nocturnal Garden audio all day to be able to function.

I'm not prone to spikes except if there's an extremely loud noise, like a toddler screaming in a cafe or someone slamming a car door. Saturday night was an anomaly that I hope never occurs again.

Steve said:
Whatever you do with audio therapies I don't think it's a good idea to listen to them for too long, the audionotch website tells you to listen for 1 hour daily. The brain needs some down time to process, especially when you are creating an artificial soundscape that would not be heard normally.
Click to expand...
I'll pare down the audio notch to 1 hour per day. When I play the ACRN, it drops out of my awareness. I had the general fuzz ACRN playing yesterday evening, just above hearing threshold, and it wasn't until I went to mynoise.net that I realized my computer sound had quit. For how long it had been that way, I have no idea. I should set a timer from now on for whatever sound therapy I'm using.

Steve said:
One other thing, especially for notching, is to keep a check on the frequency of your tinnitus. If it moves you need to do the notch again to make sure you're working on the right frequency area.
Click to expand...
I check it every 2 days.

Thanks for all the helpful info. :)
 
#422
Another post regarding my neuromodulator therapy.
A little overdue. I set out to post progress or the lack thereof every week.
I will try to be objective. This is difficult because at the moment my tinnitus is just going down from 8 to 6.
More of an effort to stay objective when tinnitus is loud or was loud just moments ago.

The tinnitus tone doesn't seem to go down any more, or is at this lower frequency for a longer period of time. I was expecting this.
So at the moment I am not convinced there is progress.
 
#423
I will post with larger intervals. I start to feel that once every week is too frequent.

Not much has changed. At the moment 6 out of 10. This morning 3 out of 10.
Lower tinnitus frequency (6 kHz) is still gaining. Again very, very slow.
Hyperacusis not improving :(

One thing worth mentioning: my audiologist (last weeks visit) noticed that the tones generated in the neuromodulator player were able to be lowered 10 dB for my most damaged ear! (Left ear level was kept unchanged).
This should imply that at that instance my tinnitus level had decreased 10 dB! (At that point in time my tinnitus experience was a 5 out of 10). I was pleasantly surprised:woot:.
10DB is more than double (improvement). 6 dB being double.
So the neuromodulator player level for my right ear is set at 70 dB at the moment.
My hearing threshold in my most damaged ear is 65-70 dB for 9kHz.

This implies that my tinnitus level should be very low. I conclude this because I can not see that my hearing has improved 10 dB. That would be a miracle. 10 dB is a lot! I would have noticed this "hearing improvement" in everyday life. And NIHL simply does not heal!
Despite this 10 dB tinnitus improvement (most important of all) I do not experience this as such )-;
I still subjectively rate my tinnitus on average 4 to 5 out of 10.

Also the tinnitus I hear in my left ear could originate from my right ear. My audiologist explained this is a possibility. There can be "cross contamination" (these are my wordings) in the brain. I have been thinking about this to, but I am not so sure.
For the simple reason: I know for sure that, because of the explosion, something has been damaged in my left ear to.
I hear weird copper like sounds (marbles in a copper cauldron) when I use an earplug during walking. So there definitely is something damaged in this ear too. Also hyperacusis for this ear is present.
I will post again in two weeks. Sooner if something worth mentioning has happened.
 
#424
I took part in the London/Nottingham trial of the ANM in 2012-13 but the results were dismissed because of some failure to adhere to clinical protocols: a dreadful waste of time and money. But I found the machine very helpful and have not been bothered by my tinnitus since, until a month ago when it suddenly got to near-unbearable levels again. I'm hoping this is due to sinus congestion and repeated viruses, as otherwise I shall be very frightened about my future. I still have the ANM so will try it again, but of course it ought to be regularly adjusted to match the sounds in your head and that means going to Harley Street and paying a great deal of money!
 
#425
@Helen Birkbeck
Good to hear it worked for you. Not so good to hear your tinnitus is back again. The returned tinnitus frequency is different from the previous one?
But I agree it is a lot of money.
 
#427
Another update regarding my neuromodulator therapy.
I am starting to notice a decline in tinnitus severity.
Also I need to have the neuromodulator player at the lowest level most of the time. This is also an indication that I am not imagining things.

At the moment my life is very regular.
I do not know if it is my circadian rhythm, but I can almost synchronise my wristwatch on the times my tinnitus will start to go up again. In the morning (6 or 7 AM) my tinnitus is a 3 out of 10.
Than I start the therapy for approximately 4 hours. This instantly ramps up the tinnitus.
When I am at the end of a therapy session (11.00 or 12.00 hour) the tinnitus usually is low. 4 out of 10.
At 13:30-14:00 hours the tinnitus level starts to increase. 6 out of 10 and sometimes higher.
At 16:30-17:00 the tinnitus starts to go down again. 3 out of 10.
Sometimes if will flair up again at 19:00 for a short time.
On average the tinnitus level has been lower for the last couple of weeks.
Also for longer intervals the tinnitus frequency in my most damaged ear is lower (4-5 kHz).
Hyperacusis is still bothersome:(
 
#428
It is time for another update regarding my neuromodulator therapy.

Like I mentioned in my previous post, my tinnitus and hyperacusis are very predictable.
The tinnitus is still very, very slowly abating. Too slow to mark it again, but I do notice improvement.
The lower frequency is not yet gaining. I was expecting this. Only at night in bed I notice the lower frequency tinnitus more.

The hyperacusis can sometimes still make me feel desperate.
I will mention it again. I know that the therapy is for tinnitus. Yet I clearly notice a connection between the two.
Every day my tinnitus starts to go up between 13:00 and 13:30. One hour after stopping the therapy.
Every day my hyperacusis starts at 15:00 (approximately). The hyperacusis is not abating. Strong every day. I wonder if the therapy ramps up the hyperacusis?
Perhaps it is just that my hearing gets tired at that time of day?

When the improvement is continuing I am happy I started the therapy.
But after almost three months I suppose it is still early days for a condition like tinnitus.

In a couple of weeks time I have another appointment with my audiologist.
I am know already that the volume of the player needs to be adjusted again. At the moment the volume is at minimum al the time. Don't get me wrong. The tinnitus is still 6 or higher out of 10 after 13:30-14:00 to go down again at 16:30-17:00. That has not changed much.
But the lower level tinnitus is almost comfortably low.
 
#429
Reinier said:
I wonder if the therapy ramps up the hyperacusis?
Click to expand...
It's only a personal experience, completely anecdotal, but... When I trialled the device I got my hyperacusis back after having lost it years before.

There may have been other factors at play; it was the Nottingham trial and the old device where you set your own volume, plus the in-ear things did not agree with me. I'm pretty sure if there was a general connection to increased hyperacusis the device would be struggling, it is worth mentioning it to the audiologist though (if you haven't already) as they may have experience of it.
 
#432
Kyxwz said:
neuromodulation work or not? And how i can try it?
Click to expand...
Some say it works, some say it doesn't work. I know, not helpful. This is why I am posting my experience with the therapy.
I have not yet concluded if it works for me.
That way people can decide themselves if they want to spend the (expensive) money or effort.
I don't know if it is available in Italy
 
#437
monacco said:
If you car breaks down you have to open the hood to repair the fault
Click to expand...
I agree. But if we "open the hood" we will see an engine anybody knows much about. It is like software in an engine management. If you do not have all the information it is just a black box.
The fault in damaged inner ears is not able to be repaired. Medical science is just not there yet. I which they were. Than I wouldn't spend so much money on something that is not guaranteed.:(
In the mean time I think the neuromodulator therapy is a mechanism that could work. The "advertisements for this therapy" made sense to me.
 
#438
Has anyone heard of a company called Desyncra Supposedly they have come up with a sound generator that works to get rid of tinnitus. Website is Desyncra.com Expensive over $5000 They said you could experience the difference in 60 days. I don't trust any of this.
 
#439
Padresstar said:
Has anyone heard of a company called Desyncra Supposedly they have come up with a sound generator that works to get rid of tinnitus. Website is Desyncra.com Expensive over $5000 They said you could experience the difference in 60 days. I don't trust any of this.
Click to expand...

You mean this one
 
#440
I have been doing a lot of research on treatments for tinnitus and found a treatment known as "Adaptive Neuromodulation", developed by ANM Adaptive Neuromodulation GmbH. It seems available in Germany and UK but it does not appear available in America (or Canada). I also find a dearth of clinical trials except for one started around 2009 and concluded (with no result reported) in 2012.

I have read some comments on this forum and other sites from doctors who state "we have no proof this works" and "there have been no peer reviewed studies". I myself am a scientist (a theoretical physicist) so I know the scientific method and am amazed at the cavalier attitude of the medical community to a tinnitus therapy that has (anecdotal) reports of success but few studies to determine the validity of this therapy. Its not like the doctors can offer us sufferers another treatment (other than "learn to live with it") so, with nothing available, how about studying something that MIGHT work? Don't say you have no proof until you have actually tested it!

(By way of explanation, I have been to numerous doctors and ENTs about my tinnitus, which some days is almost unbearable, and generally I seem to know more than the doctors. One ENT at a respected NY clinic actually gave me the name of a supplement to buy on Amazon. Asked about Adaptive Neuromodulation, my local ENT said he had never heard of it. Thus my respect for the medical community is about as low as the ground allows.)

There is some logic to Adaptive Neuromodulation (I have read the few papers available) and I would love to try it, but I can't unless I spend 6 weeks in the UK! The treatment is non-invasive and would seem to have few side effects (other than not working). Why doesn't some USA clinic offer this therapy (with the obvious caveats about unproven therapy) and then see if it works? If a patient is willing to pay for the treatment knowing it may not work, why not offer it? Why is a possible therapy ignored?

OK, medical doctors, give me all your excuses...
 
#442
GregCA said:
I think what you are inquiring about is ACRN. It is available in the US (but it hasn't been long). See http://www.desyncra.com
Click to expand...

Thank you, Greg.

But that was just one of my points, the biggest being how the medical community treats tinnitus almost like a psychological illness, to be "lived with", and puts down treatments they have not clinically tested. As I also said, my ENT and Audiologist claimed they never heard of ACRN - so much for keeping up on the research for your patients. Also, the Desyncra map showing treatment centers shows the treatment is not available East of Chicago, an amazing fact for a medical treatment.

Why has there not been a real, double blind clinical trial of Neuromodulation treatment that would provide a definitive answer as to the efficacy of this option? All I can find are "less than rigorous" (almost anecdotal) papers written by the manufacturers on "trials" of small numbers (under 100) of people with no control groups and not very much data. The results are almost always patient-reported surveys (useful but not dispositive). How much of this effect is the Placebo effect? Does the effect last over time and during times of stress? A well designed study could start to answer these questions.

As a side note, I also question the myriad of theories regarding the causes of tinnitus. (I am a scientist, so a good theory is natural to me.) Although I have read the MRI studies showing synchronous activity in the auditory processing areas of the brain, I also know that tinnitus, mine in particular, was caused by exposure to extremely loud noise, over 150 db (a rocket engine while I was in the service). That sounds like ear damage (no pun intended) causing brain misfiring. Later, Cipro (an Ototoxic antibiotic) increased the tinnitus and added a pulsating factor. Ear damage again. So perhaps Neuromodulation may help lessen the perception of the tones but I think the ear damage must be addressed. Where is the major University research program answering these question?

I will probably take a trip out West to try out the Neuromodulation treatment since the current treatments offered by my ENT doctor (none) offer no tangible relief. Have you done Neuromodulation treatment? Has anyone on this board tried it and can report results?
 
#443
@LB Jeffrys
As an engineer myself, I also look for scientific studies and find them lacking, but I realize we are caught between 2 contradictory requirements:
- we want treatments to be "vetted" by scientific studies
- we want them available to us ASAP

I think many T sufferers are willing to try these treatments despite the lack of clean double blind studies, and would rather take a chance and try it asap than wait for such studies to be implemented.

Many experimental treatments are like that, and the only way to get them is to participate in clinical studies (which isn't always practical).

Your ENT & audiologists may not keep up with the latest and greatest indeed (in their defense, I believe this device has just recently been approved by FDA, and therefore available in the US). I always say that nobody has the highest vested interest in our health than ourselves, so I always think the onus is on me to bring up to my doctors' attention any new possible treatment or avenue. I wish they knew all of it, but the reality is that to be on top of everything you kind of have to be fanatic about your work and domain, and that's a really small fraction of the workforce. If you find that gem of a doctor, then you're lucky. I find it's about the same in every profession (mechanic, software engineer, etc...).
 
#444
In February I started the neuromodulator therapy.
My tinnitus is still present al the time.
I don't know if I am habituating or if it is the therapy that works, but the tinnitus is for longer periods bearable.
There still are instances where the tinnitus is debilitating.
Not much use to you regarding efficiency of this therapy, I know.
I remember there was a trial, but people that were in this trial had to buy this therapy. Then you are inclined to conclude the therapy is working.
But, yes, we need double blind clinical trials.
 
#447
LB Jeffrys said:
As a side note, I also question the myriad of theories regarding the causes of tinnitus. (I am a scientist, so a good theory is natural to me.) Although I have read the MRI studies showing synchronous activity in the auditory processing areas of the brain, I also know that tinnitus, mine in particular, was caused by exposure to extremely loud noise, over 150 db (a rocket engine while I was in the service). That sounds like ear damage (no pun intended) causing brain misfiring. Later, Cipro (an Ototoxic antibiotic) increased the tinnitus and added a pulsating factor. Ear damage again. So perhaps Neuromodulation may help lessen the perception of the tones but I think the ear damage must be addressed. Where is the major University research program answering these question?
Click to expand...

Stanford is working on the ear damage stuff.
 
#448
Met with audiologist in Santa Monica USA who is recommending Desyncra (sp?). Im going to try it as there is a 60 day refund (though not for the $750 fitting session). While he doesnt think I would feel the full effects in 2 months there should be some improvement. The cost is about $4,750.
 

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