MemberNo, actually it's about 80% of tinnitus sufferers that can manipulate their sound through head and neck movements. If you can change the sound of your tinnitus that way, you have somatic tinnitus. And that is the type that Dr. Shore says her device helps with. The fact that your tinnitus changes when you clench your jaw is a very good sign that this method will work for you!
New University of Michigan Tinnitus Discovery — Signal Timing
- Thread starter Hudson
- Start date
Dr. Shore will throw us a lifeline in a couple of years, maybe less (like a year or so). We'll find out more about that on Decemer 2nd/3rd. You won't have to wait ten years for effective treatments to become available (assuming that Dr. Shore's treatment works, which I do). It might be 10 years for a cure to happen (or something like that) but at least we'll be able to manage better when the Michigan Device comes out.
Dr. Shore's device is really the only thing that gives me hope and comfort at the moment. Let's just all hope it works. Even if it only just silences my tinnitus, I can live with that!
No. They have said that it will only work for somatic tinnitus at first, but they will try to get it to work with non-somatic tinnitus after it's been released.
FWIW, I asked a friend of mine who works in academia (he's a Professor at the University of Maryland with tinnitus). He told me that you usually don't present the results of a trial at a conference until you've published in a scientific journal.
So there's that! We seem to have that going for us. If she publishes the results of the trial soon, my feeling is that it won't be too long before commercialization. I think the productization of the device and FDA approval won't take a long time. Usually medical devices can be approved by the FDA in 6 months or even less. It's not the same as bringing a medication to market where the FDA approval process can take upwards of a decade or more.
Dr. Susan Shore's device is also the only hope I have to hold on to. I really hope we won't be disappointed this time.
Tinnitus has literally ruined my life for almost 4 years now. I'm 31, I lost the only girlfriend I had in my life 6 months ago, and now I'm having a terrible time finding a woman because all the places to meet are noisy...
On top of that my sleep is catastrophic... I can take the maximum dose of Mirtazapine and Melatonin, but nothing makes me sleep, this illness wakes me up all the time.
My life has become completely bland, I live without any pleasures. This illness is disastrous in every way...
Tinnitus has literally ruined my life for almost 4 years now. I'm 31, I lost the only girlfriend I had in my life 6 months ago, and now I'm having a terrible time finding a woman because all the places to meet are noisy...
On top of that my sleep is catastrophic... I can take the maximum dose of Mirtazapine and Melatonin, but nothing makes me sleep, this illness wakes me up all the time.
My life has become completely bland, I live without any pleasures. This illness is disastrous in every way...
- Jul 8, 2019
- 1,140
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
If all goes well and we get a result in 2023, then this entire thread should be filed in the national archive as a working example of the phrase "within the next 10 years".
My understanding (which may be incomplete but I think is mostly correct) is that the DCN - the Dorsal Cochlear Nucleus which resides in the auditory cortex of the brain not only processes sound but also the sense of touch. So nerves that perceive touch in other parts of the body, especially around the face and neck, are linked to it. So stimulating those areas with electricity while playing sounds through headphones that correspond roughly to the frequencies you hear in your tinnitus will break up the synchronization of cells in that part of the brain (called fusiform cells) which is what will relieve tinnitus. The theory that Dr. Shore is attempting to prove through her research is that the hyperactivity of the fusiform cells in the DCN of the auditory cortex is what causes tinnitus. And that breaking that synchrony through electrical stimulation paired (to the microsecond) with sound is what will relive those symptoms. This is what she is going to discuss at the Palm Springs Hearing Conference on December 2-3.
I always wondered why subjects in the Phase 1 clinical trial had mild tinnitus? I think the average THI was 29. I suppose lots of questions cannot be answered yet, but if half got a 13 point reduction, that is basically ~50% reduction in the handicap. Whether that translates to those of us with THIs of 50-100 (most of us), who knows.
I think the biggest challenge will be adequate training so audiologists know how to use the device. My audiologist just likes to do standard hearing tests and comment on results :-/
I think the biggest challenge will be adequate training so audiologists know how to use the device. My audiologist just likes to do standard hearing tests and comment on results :-/
- Jul 8, 2019
- 1,140
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
I honestly don't know enough about Auricle and the way these things work to be able to offer a point of view about early integration into the NHS.
I think I mentioned before that at my recent visit to NHS audiology, staff were wearing Neuromod branded lanyards. So clearly there's active and early(ish) penetration into NHS by similar companies to the upcoming Auricle. But I suppose essentially Neuromod is an Irish outfit so maybe these things happen quicker because of that this side of the pond.
However, that's not to say we won't be able to get hold of Dr. Shore's device through the usual Harley St. suspects. I guess the question is, how deep pockets will we need? Based on the cost of Lenire, I'd guesstimate circa £3.5k -> £5k at today's prices.
Hope that wasn't more than a sidenote. I can relate to the breakup part, as it sucks to break up for health reasons, but the moment someone feels they need to find a new partner, like they need a new car/commodity when the old one is bust, that's just myopic, and not any different from saying "I'm having a hard time finding a woman because I don't drink", or "because I don't care for bars and going out". There are people here who would feel happy simply if the noise stopped, even for a while, for instance one guy who was the father of a small child that felt he didn't have a reason to wake up, and people who are unable to hold a job or get educated because of tinnitus. Kindly insert your predicament in relief with that. While pretty much everyone here wants to heal, sleep and pursue a career, I bet you'll find no such consensus that having a partner is better than being single.
They have never said that specifically. Only that it was part of the inclusion criteria for the clinical trial.
AfroSnowman
Member
- Jul 23, 2019
- 1,071
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
That's why the measured dB reduction is so intriguing. What was it on average? Something like 9 dB?
I've found one of the links that states that the device only works for somatic tinnitus sufferers.
Check this link.
The link I posted says:
Dr. Shore has this to say on the topic:
Which means that they are exploring whether it will work for nonsomatic forms of the disorder, they have not stated specifically that it will work on the nonsomatic form. They have only stated that it works for somatic sufferers.
I believe that the Engadget article I posted was the first place I saw that claims it only works for somatic tinnitus sufferers, but I am sure I have seen it other places as well, in addition to having Dr. Shore say that directly to me in email.
- Mar 2, 2018
- 280
- Tinnitus Since
- 2/2018
- Cause of Tinnitus
- Rock 'n Roll
Not to beat a dead horse but it's definitely been mentioned at least 10 or so times in this specific thread - not to mention others - but when conducting clinical trials it's imperative you design a study with results that can be ACHIEVED. Severe cases are more complicated and therefore harder to get clinically significant results out of.
For a treatment like this it's better to have it be approved for a smaller indication and to grant use for off-label (severe) cases later on. If you muddy the waters trying to treat everyone and their mother's case in a clinical trial absolutely nothing will get approved by the FDA ever.
It's likely that if this works on mild cases, it works on a subset of all cases. Getting approved for use is their #1 goal. Otherwise, it never see's the light of day for ANY type of case - mild, moderate or severe.
- Dec 18, 2015
- 618
- 45
- Tinnitus Since
- 03/2015
- Cause of Tinnitus
- Noise induced, loud rock concert
I have similar concerns as you, sir. In fact papers say 80% of tinnitus patients have it somatic, but I presume, based on testimonies in this thread, most of us can only increase tinnitus sound by clenching the jaw or tensing the neck muscles. I'm not sure I have seen a single claim here of one being able to reduce the tinnitus sound. Nonetheless, I still hope Dr. Shore is onto something big and she found a way to use somatic tinnitus phenomenon to our favour.
- Jul 16, 2019
- 89
- Tinnitus Since
- 10/2018
- Cause of Tinnitus
- Unknow. Maybe stress?
I'm worried we won't learn anything relevant at the Palm Springs Hearing Seminar. General information about the second clinical trial and general thoughts on how to proceed. But the concrete conclusion, to what extent and how many people the device helped, will remain secret.
By the way, I can reduce one of the sounds by pressing my thumb on the sled bone.
By the way, I can reduce one of the sounds by pressing my thumb on the sled bone.
DimLeb
Member
- Jun 20, 2021
- 355
- Tinnitus Since
- 03/2021
- Cause of Tinnitus
- Idiopathic Cochleopathy or Maybe Loud Music
I've got 3-4 (mild) sounds with good and bad days. I can reduce/muffle one hissing/air exhaust sound in my left ear by clenching together my back teeth on that side or moving the jaw towards the other side. It provides some temporary relief especially on its worse days when it kind of increases. For my other sounds, I can't say I've found any other somatic component, they just fluctuate a bit from day to day.
Karen1979
Member
- May 5, 2021
- 19
- Tinnitus Since
- Feb 2021
- Cause of Tinnitus
- Noise damage /Acoustic trauma?
The NHS will only fund grade A-C evidence based practice (In my service, maybe this isn't national) so I can't see it making its way in the NHS any time soon. Post commercialisation, more than likely in the UK, it will be something like The Tinnitus Clinic that picks it up (at what cost - who knows.)
AfroSnowman
Member
- Jul 23, 2019
- 1,071
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
Well that made me look it up "Pooled groups showed a mean decrease of 8.035+/-1.33 dB from a baseline of 54.42+/-13.3 dB in loudness matches during the four weeks of active treatment."
I had a jaw-modulable sound that virtually disappeared some months ago, leaving me with only "non-somatic" tinnitus. I've seen others say the same. I'm not convinced of the heterogeneity of this condition at all.
@Karen1979, so grade C evidence would be what? Double blind with a minimum number of participants or is it number of studies?
So 8 dB, which is a lot. Basically 50% reduction in volume. Interesting that the mean is almost 55 dB, yet average TFI is low at 29. I read that as moderate to severe in loudness and low in handicap.
Anyone correct me?
I finally did get a response from Dr. Shore on treating one ear with her device. This is what she had to say:
I thought that was very interesting and explains why they only use one earbud in her treatment!Dr. Shore said:
Wow. I would criticise people for harassing her, however her response was very interesting and enlightening. I didn't realise this and thought you would treat each ear separately.