@threefirefour have you checked for this? This might be true but I haven't really thought about it before, I was just going off what they were saying that it works for everyone equally.
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
Member- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
I believe another user on this thread mentioned that Shore's device is customised to target certain nerves, determined by where the patient can modulate his / her tinnitus (I haven't verified this).
Using this logic perhaps you could hypothesise that if patients can modulate tinnitus through movements of their jaw then perhaps Lenire will be more effective (given Lenire targets the trigeminal nerve)?
@PeterPan Out of curiosity are there any questions relating to somatic tinnitus in the Lenire survey?
I'd like to opt in on this, to give some encouragement. I don't use Lenire (my tinnitus comes from neck issues, not noise induced), but my recovery so far is following a similar path as described above.
I started out with tinnitus of what I'd call 9/10, screaming through my head all day. Once I started doing my neck exercises, the average volume slowly reduced to its current state: my tinnitus is now between 0-3, usually around 1.
The "average" statement is important here. As we all know, tinnitus is extremely hard to measure, since there is no objective way to do so and since we should not focus on it at all. My improvement started halfway October, but it fluctuated wildly between 6 and 9. It wasn't until half November (4-7) that I honestly believed my symptoms were improving, as at this time I did not have days of 7+ anymore. Slowly my best days became my worst days, and my new best days became my new worst days, until I reached the current point of worst days being only 3/10, which doesn't bother me that much at all.
The point I'm trying to make here: improvement can take a long time and is incredibly hard to measure, but patience and discipline is key. Even though treatment in my case is different, tinnitus acts the same with its highly fluctuating nature. Maybe you can't tell if there is progress right away, but that's fine. Take any good days you find during treatment and live them to the fullest, and remain hopeful as to its outcome. Don't bother with results yet before a few months have passed.
I have non-somatic tinnitus, let's see what happens.
All the semi-positive reviews are written by people with somatic tinnitus? I'm not sure about that.
- Aug 28, 2019
- 1,496
- Tinnitus Since
- -
- Cause of Tinnitus
- -
I always presumed this would be the case, but was hoping in reality it wouldn't be so. I have non-somatic tinnitus.
Not sure whether to go ahead and try it or not.
- Apr 22, 2019
- 32
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- ear infection
I am in the early stages of using Lenire and I do not have somatic tinnitus. I will post in the User Experiences thread when I have completed a couple of weeks.
AfroSnowman
Member
- Jul 23, 2019
- 1,075
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
I just checked exclusion criteria from tent-2a and i think what you might be referencing is the following exclusion: "Diagnosed with somatic tinnitus resulting from head or neck injury."
I didn't see any other exclusion of somatic tinnitus.
I do believe that shore's device is being tested exclusively on somatic patients
I didn't like the morbid avatar image he started using. I'm worried for the guy.
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
80% of people have somatic involvement so this seems unlikely.
Neuromod is working along the same basic principles as the UMich device, there's no reason at this time to think the patients they will be most effective against will be different.
Donny this is simply not true. Their trial criteria states "Diagnosed with somatic tinnitus resulting from head or neck injury."
If they excluded people with somatic they would be excluding 70% percent or more of all tinnitus sufferers.
Trial Info
I hope he is ok.
- Jun 23, 2019
- 98
- Tinnitus Since
- 1992 (got much worse in 2018)
- Cause of Tinnitus
- Loud noise exposure
I will keep everybody posted. Yesterday was my best day since I started the treatment. My tinnitus was at a very low level, possibly the lowest it has ever been in the last 14 months. Today is not so good though... it's a real rollercoaster!
- Aug 28, 2019
- 1,496
- Tinnitus Since
- -
- Cause of Tinnitus
- -
Can you explain to me why so many have a somatic element, yet others don't? In fact why is some tinnitus somatic and others not. I don't know the science behind all of this.
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
I really can't, I am not a scientist, just someone who has tried to understand my own problems as well as I can.
Here's what I know:
In the 80s Dr. Richard Salvi from UB discovered that a lot of tinnitus patients could change the sound by moving their neck or jaw. This was surprising to him, so he did a formal study and concluded that 80% of people with tinnitus could modulate it to SOME extent.
This led to other research.
The UMich device (or Lenire), at a base level, is supposed to work like this:
Your Dorsal Cochlear Nucleus (DCN) gets nerve fibers from the ears as well as touch-sensing nerves in the neck and face. It "integrates" these and passes a more processed data stream on to the rest of the brain.
In (somatic) tinnitus patients, in the DCN, some of the wires from touch-sensing nerves get crosswired into the output to the auditory cortex. This is thought to be the DCN trying to maintain homeostasis.
The device uses electrical trickery to exploit "spike timing dependent plasticity" to basically fool the DCN into thinking it's getting full audio data from the ear again, and undoes this cross wiring (which takes a couple weeks to happen).
UMich told me that people who do not seem to be able to modulate their tinnitus at all with any muscle movement MIGHT still benefit from this device, or a future version -- and that future version might involve figuring out exactly which nerves are incorrectly wired at the DCN level.
It may also be that there are other types of tinnitus which involve no changes at the DCN, but either actual misfiring nerves in the ear, or problems in other brain regions. All of those things are still huge question marks.
Yes, we have this question:
"Are you able to change the volume or pitch of your tinnitus via somatic modulation (e.g. jaw or neck movement)?"
So far we have had 32 "Day-0" or baseline surveys completed. 21 have somatic tinnitus, 10 do not and 1 is not sure.
The average TFI score (a measure of tinnitus severity) for people with somatic tinnitus is 45.6, and for non-somatic it is 57.0. There is no statistical difference.
We expect another approximately 10 "Day-0" surveys prior to the end of January, for a total of about 42 participants.
The present plan is to then make available a "Cohort Analysis" which will provide information on the pre-treatment characteristics of the survey group at the end of January. This will include information such as any relationships between tinnitus severity and participant characteristics.
At the end of April all the participants should have completed their 12 week surveys and we can then make available the report on the post-treatment characteristics i.e. has there been a change in the average participant TFI, is there any relationship between patient characteristics and the change in TFI etc.
Yeah for me it says people with somatic tinnitus are more likely to have a reduction.
Correct me if I'm wrong but most people who suffer from hyperacusis have noise induced tinnitus, right?
Neuromod stated that people with hyperacusis are "super responders" to Lenire, that means that this device works better on people who have noise induced tinnitus?
So why are you guys saying that Lenire works better on people with somatic tinnitus? Just because 2 or 3 people with somatic tinnitus on this forum said that they got relief from using Lenire?
Neuromod stated that people with hyperacusis are "super responders" to Lenire, that means that this device works better on people who have noise induced tinnitus?
So why are you guys saying that Lenire works better on people with somatic tinnitus? Just because 2 or 3 people with somatic tinnitus on this forum said that they got relief from using Lenire?
I don't think this is correct. Do you have a source? I have mild hyperacusis but my tinnitus is not noise induced.
We do have information on the cause of tinnitus in the Lenire User Experience survey and I can correlate hyperacusis with the cause of being noise induced or acoustic trauma:
There is no relationship (at least in this study).
No noise induced tinnitus here, but I have had hyperacusis in the past, though it was only for a few weeks.
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
This was true of the Phase-I, though IIRC they also told me that in the animal model it hadn't actually mattered very much where the electrodes were placed, and they were doing it that way to try to maximize the effect. But, more study needed to see how much that matters, if at all.
Lenire certainly seems to think it doesn't, but the trip reports in the Lenire thread, so far, make me uneasy after my UMich experience.
- Apr 25, 2019
- 78
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- don't know, probably motorsport + headphones for last years
I just couldn't resist and asked him once again how he's doing with Lenire (4 weeks after the message above).
I quote his answer: "I've stopped using it as I'm at a level where it's pretty much unnoticed
,,What I think is important is is that he was able to repeat the treatment and had success again and he got even better results while using the device again and/or longer compared to the TENT-A2 trial.
I guess for him It's time to attend some Metallica shows again...
MRItechssuck
Member
I read that you were in phase I, couldn't do phase II, but did you have problems with Dr. Shore's device?
This thread is like balm for my soul.
I'm heavily addicted.
If only there wasn't the long waiting times and the not knowing if Lenire is going to work for you.
I wish you all a Happy New Year and great success to everyone who is using Lenire right now. 2020 is going to be our year. I want peace and silence so much.
@Ivkopivko
Do you know if his tinnitus is / was somatic (able to be modulated by jaw/neck movements) and if he had hyperacusis?
Thanks!
I'm heavily addicted.
If only there wasn't the long waiting times and the not knowing if Lenire is going to work for you.
I wish you all a Happy New Year and great success to everyone who is using Lenire right now. 2020 is going to be our year. I want peace and silence so much.
@Ivkopivko
Do you know if his tinnitus is / was somatic (able to be modulated by jaw/neck movements) and if he had hyperacusis?
Thanks!
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