MemberBig thanks for taking this on! You're doing a wonderful thing, as I expect this will take up a significant part of your week.
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
Director- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
Just to second Markku here in thanking @PeterPan (aka Simon) for taking on this major responsibility!!!
When there is justification for a cure or a treatment I am interested.
In the last 200,000 years man seems to have substantiated nothing whatsoever.
I know I am old - (76) - but I can probably give it a few more days.........x
(just checking my pulse as we speak).
(124/68)
PS - don't forget John - you've got
'The Lord' in your corner.......x
RichardGuy
Member
What happened to that one young lady on here who participated in the trials in 2017 and experienced full remission with this? I know she finally decided to leave but getting some more details would be nice considering we may not have more direct information for months.
This thread is pretty well-known now and I'm seeing some new faces posting in it. I expect to see some first-hand reports very very soon considering that the biggest benefits show up after the first six weeks of use. If they don't show up here then they will pop up on Neuromod's Facebook page and get shared over here.
RichardGuy
Member
Are you sure? I thought that the first appointments would not be for a few months, and then at least another few weeks for assessment and fitting? If not, when should we expect these results?
Despite our fears and sensitivity to noise, the limits of noise exposure and subsequent hearing damage are well understood. The volume of the device would not be calibrated to damage hearing when listened to for the prescribed time period (30-60 minutes).
As far as I know, they have already started doing assessments. When you see appointments scheduled months in advance you're talking about those not lucky enough to be first in line. I mean, if they are only one office how many assessments can they do each day? Maybe 4-6 tops if it's one at a time and it's over an hour for each assessment. So the odds of anyone here being among the very first through the door are low.
Some people already had their assessments and are just waiting to get the device.
RichardGuy
Member
That seems like the description of "minimum masking level" (MML). There is another process used to measure tinnitus loudness that involves comparisons to calibrated values. They are different things.
@JJ2time
Could you ask about the average tinnitus loudness reduction (in decibels) and how many weeks will it be until the first signs of improvement are seen? If someone had H, but no longer has it, will he also have an increased benefit from treatment? [Maybe a stupid question but I'm desperate and I'm looking for hope]
Could you ask about the average tinnitus loudness reduction (in decibels) and how many weeks will it be until the first signs of improvement are seen? If someone had H, but no longer has it, will he also have an increased benefit from treatment? [Maybe a stupid question but I'm desperate and I'm looking for hope]
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There is some indication of the number who worsened in the Neuromod presentation @annV has as I recall.
It was less than 10% and we don't know why it worsened. Was it the treatment? Or did they expose themselves to ototoxic medication or loud noises during the treatment?
Also, in the interview Ross O'Neill did mention that the majority of people whose tinnitus worsened went back to normal when stopping the treatment.
We have no hard numbers on this, just what was said by Ross O'Neill and what was shown in the slides.
I really hope this works out and brings relief to a lot of people, but I can't help but be jaded and pessimistic when it comes to tinnitus treatments.
Back when I first got tinnitus I was accepted into the AM-101 trials. A few years ago AM-101 was the latest and greatest thing that showed promise in quelling tinnitus in its early stages. I was desperate for relief and put a lot of hope in it working. They treated me well and I went through 3 rounds of 3 injections into each ear totaling in 18 injections. I only had minimal (if any) improvements and the trial failed. I don't regret doing it, and the hope kept me going during the hardest times, but it taught me to manage my expectations with this condition. Hope is a funny thing, it keeps us going, but it often leads to disappointment.
Back when I first got tinnitus I was accepted into the AM-101 trials. A few years ago AM-101 was the latest and greatest thing that showed promise in quelling tinnitus in its early stages. I was desperate for relief and put a lot of hope in it working. They treated me well and I went through 3 rounds of 3 injections into each ear totaling in 18 injections. I only had minimal (if any) improvements and the trial failed. I don't regret doing it, and the hope kept me going during the hardest times, but it taught me to manage my expectations with this condition. Hope is a funny thing, it keeps us going, but it often leads to disappointment.
The other process would be matching where they determine your sensory level then have you match the loudness of the tone to your tinnitus and the result is decibels over sensory level dBSL.
I have a date for 2nd of August. I'm just emailing them about my ear wax issue and the fact I've not had a hearing test done because of it. I can get a same day return flight for 108 pounds so it's tempting to give this thing a shot.
For anyone wondering its 18 miles from the airport to the hospital. How does everyone plan to get from A to B?
For anyone wondering its 18 miles from the airport to the hospital. How does everyone plan to get from A to B?
- May 9, 2017
- 929
- Tinnitus Since
- 2013
- Cause of Tinnitus
- Noise-induced
They did talk about it, question 21: Are there any instances of tinnitus getting worse or being cured from the treatment?
Ah, so you too know well the sound of a need piercing your eardrum. Could you taste the stuff when it flushed down your eustachian tubes? Did it make you dizzy for a moment?
Nope couldn't taste it. I found out after the trials that I got the real drug in the first round. The trial coordinator warmed it up to body temperature so no dizziness. It seemed to lessen my fleeting tinnitus occurrences, but that's about it.
O' and after the first round I boarded a plane just a couple hours later (i.e. still had holes in my eardrums). When we ascended my ears pretty much emptied out into my sinuses. No pain, though.
The only problem I had was the single time one of the doctors suctioned my eardrum after putting too much phenol on it, I will never allow that to happen again.
Yes, suction devices in the ears are definitely bad.
No ears or tongue? No tinnitus?
Ooooo what if you used this and you never even had tinnitus?
- Apr 12, 2019
- 29
- Tinnitus Since
- 12/2018
- Cause of Tinnitus
- Ear wax removal with suction by ENT
Hi Jazzer,
I don't know you, nor have ever interacted with you. But I can tell you this:
I am begging you to consider this treatment. I saw your video and I just don't know how you manage. Whenever I have a spike and think I can't go on, I think about your line about how your shaver is the only match for your tinnitus and I quickly get my act together and get through it.
"Have patients gotten worse? There were a small number of patients who have gotten worse, erm not dramatically, their tinnitus might have gotten, you know, elevated. These patients, they were asked whether they wanted to discontinue the treatment or continue, a lot of them continued. Eh, most of those cases then resolved, so we haven't had any serious adverse events in the study, and eh so we haven't had any very... just very, kind of, yeah well this term "serious adverse events", you know so there aren't any patients we're very very concerned about. And the majority of patients did actually, in patients that, some patients experience some change at the start which is probably to be expected at the start if you are doing something, if you are disrupting this kind of neural processes there is going to be change".
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