Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
Member
Hi all,
I'm a first posting tinnitus sufferer, soon to turn 47-year-old male, living in the US. I've had tinnitus for a couple of years, however I'd say things got pretty bad last year. From a white noise to a very high pitched wheeeeeeeee sound, most of the time that is at such a high frequency, it's hard to mask out. Sort of a coil whine sound. Increased if I clench my jaw. So somatic I guess.
I went to an ENT for an initial consultation, but he annoyed me in that he was so unsympathetic. He did however say my ears are fine then charged me a fortune. Needless to say I didn't go back. Regular Dr gives me a low dosage of Klonopin and thankfully I'm able to sleep regularly. Some days I seem less bothered by it, and those days are amazing!! Maybe the start of habituation or it could be that whatever is firing off up there is genuinely not as loud?
Anyway I've remained only a lurker only on the forums, because the more I thought about tinnitus, the worse it became. Knowing there was no cure, I spent most my time just keeping busy instead. So tried to stay away from participating in the forums and only came on here to remind myself, that real efficacy treatments are not that far away.
As most of us here, I've been keeping an eye on the research, and signed up to Neuromod, who gave me a date in late July!
I'm all booked up, flights all set and ready to go!
I've sort of accepted this tinnitus is here. Which is sooooooooooo much better than the state I was in, when it first got it and it turned real bad. There was a time, where I could have just driven off a bridge to make it end. But I'm no longer there, which is something I'm so grateful for in myself. So I'm happy if I even just get a reduction. It doesn't have to go away completely. I've learned to accept, life is not always perfect.
Some people out there with much worse things than a little ringing.
I guess I'll know in the next few months if this is going to help me or not, and will share my experiences with you all. Fingers crossed.
Good luck to you all trying this out. I'm very excited to be part of this new and exciting treatment.
I also signed up for the SurveyMonkey Lenire User Experience Group listed here.
I'm a first posting tinnitus sufferer, soon to turn 47-year-old male, living in the US. I've had tinnitus for a couple of years, however I'd say things got pretty bad last year. From a white noise to a very high pitched wheeeeeeeee sound, most of the time that is at such a high frequency, it's hard to mask out. Sort of a coil whine sound. Increased if I clench my jaw. So somatic I guess.
I went to an ENT for an initial consultation, but he annoyed me in that he was so unsympathetic. He did however say my ears are fine then charged me a fortune. Needless to say I didn't go back. Regular Dr gives me a low dosage of Klonopin and thankfully I'm able to sleep regularly. Some days I seem less bothered by it, and those days are amazing!! Maybe the start of habituation or it could be that whatever is firing off up there is genuinely not as loud?
Anyway I've remained only a lurker only on the forums, because the more I thought about tinnitus, the worse it became. Knowing there was no cure, I spent most my time just keeping busy instead. So tried to stay away from participating in the forums and only came on here to remind myself, that real efficacy treatments are not that far away.
As most of us here, I've been keeping an eye on the research, and signed up to Neuromod, who gave me a date in late July!
I'm all booked up, flights all set and ready to go!
I've sort of accepted this tinnitus is here. Which is sooooooooooo much better than the state I was in, when it first got it and it turned real bad. There was a time, where I could have just driven off a bridge to make it end. But I'm no longer there, which is something I'm so grateful for in myself. So I'm happy if I even just get a reduction. It doesn't have to go away completely. I've learned to accept, life is not always perfect.
Some people out there with much worse things than a little ringing.
I guess I'll know in the next few months if this is going to help me or not, and will share my experiences with you all. Fingers crossed.
Good luck to you all trying this out. I'm very excited to be part of this new and exciting treatment.
I also signed up for the SurveyMonkey Lenire User Experience Group listed here.
Ken219
Member
I believe the one thing you are all forgetting during Lenire's trials is that this truth came out. 26 years late.
'May 23, 2019
Effect of Tinnitus Retraining Therapy vs Standard of Care on Tinnitus-Related Quality of LifeA Randomized Clinical Trial'
'May 23, 2019
Effect of Tinnitus Retraining Therapy vs Standard of Care on Tinnitus-Related Quality of LifeA Randomized Clinical Trial'
I'll believe it when I see it. Susan Shore is firmly implanted in my mind as the Sloth from Zootopia.
- Oct 17, 2017
- 644
- Tinnitus Since
- 2005
- Cause of Tinnitus
- unknown - possibly hereditary
You are not the sharpest pencil are you? You realize Lenire has nothing to do with TRT? You are not very clued up. I've seen your posts on the 3M earplugs debacle and how you think because of 3M did that everyone else must be doing it too. That's ridiculous distorted thinking. If you don't have anything useful to add, keep your shit out of this thread, I don't want to read your rubbish.
That's great news for you. As a fellow USer here who has an appointment in November please post your experiences. Best of luck with the process!
- Oct 17, 2017
- 644
- Tinnitus Since
- 2005
- Cause of Tinnitus
- unknown - possibly hereditary
How much does the whole trip cost you?
Will you be making four separate trips to Ireland?
- Jun 13, 2019
- 1,108
- Tinnitus Since
- 10/2018
- Cause of Tinnitus
- Started with a cold, possibly worsened by medication/noise
Yes you are right, I may have read too much into their reply. They stated that they do not have a date for opening a clinic in the UK.
My question was more general, namely when would the product be available in the UK? Their response seems to imply that they would make the product available only through their own clinics, but again I might be reading too much into it.
I tried doing the same thing (about the US) before I was forced to commit to at least one trip for the assessment. They weren't able to give me even a vague guesstimate. All that's clear (which is common-sense) is that they are trying to roll this out everywhere but how long it's going to take is anyone's guess. I really don't think this fog of uncertainty will persist for too long, though. My personal hunch is that they'll start floating some target dates around within the next six months.
Looks like I may not get Lenire this year, I signed up a week ago.
Dear Eric
Neuromod Medical has received your completed online booking assessment. We are aware that it has been some days since you submitted your completed assessment. At this time, we have allocated all available first assessment appointments until the end of 2019. We are working to confirm allocated appointments, which may allow us to offer you an appointment in 2019. If not, we will offer you the earliest possible appointment in 2020. We will aim to get back in touch with you with suggested appointment times as soon as possible.
We thank you for your continued patience as we respond to the significant demand for assessments at Neuromod Medical.
With best wishes
The Neuromod Medical Team
Dear Eric
Neuromod Medical has received your completed online booking assessment. We are aware that it has been some days since you submitted your completed assessment. At this time, we have allocated all available first assessment appointments until the end of 2019. We are working to confirm allocated appointments, which may allow us to offer you an appointment in 2019. If not, we will offer you the earliest possible appointment in 2020. We will aim to get back in touch with you with suggested appointment times as soon as possible.
We thank you for your continued patience as we respond to the significant demand for assessments at Neuromod Medical.
With best wishes
The Neuromod Medical Team
I am interested to see how many total appointments they scheduled for 2019.
Outside of Tinnitus Talk and Reddit I highly doubt many people even know about this including doctors. We had many users here submit to get into it and we have about 20-25 members who got appointments.
They technically did release in 2019, but this is such a small scale I feel a little deceived. Just like when someone says good morning and it's 11:59 am.
I'm not complaining because I am happy the device is out. Just feel a little misled on how quickly and widespread this was going to be.
When something is almost within your grasp you tend to get a little impatient.
Outside of Tinnitus Talk and Reddit I highly doubt many people even know about this including doctors. We had many users here submit to get into it and we have about 20-25 members who got appointments.
They technically did release in 2019, but this is such a small scale I feel a little deceived. Just like when someone says good morning and it's 11:59 am.
I'm not complaining because I am happy the device is out. Just feel a little misled on how quickly and widespread this was going to be.
When something is almost within your grasp you tend to get a little impatient.
Yes! As patients we can't update doctors. They always think it's shit from the Internet. The company must contact them.
Doctors always have a holier than thou attitude.
They will literally disregard everything you say regardless of current scientific trials and studies.
I'm happy it's starting to get out too. This is a tough group to please. We were losing our minds when it was January first of this year and it wasn't out yet. Running this out of one clinic is one bottleneck, but having to schedule every patient four times is what is really slowing this down. It took them less than two weeks to fully book out for the next six plus months. I'm hoping their slow and deliberate pace will help us all in the end.
My biggest disappoint since the release is the time between the initial assessment and actually receiving the device. Their graphic said it was a two week wait for people after the assessment. It's sounding like that wait is turning out to be a month. We are looking at two and a half months before we can expect any users to report on their first six weeks results.
I have no evidence of this... but I highly suspect that the trial participants were offered early appointments, especially those who saw good results. There was a guy on this thread who made direct contact and got an early appointment based on his participation in earlier trials.
That makes sense. We know the 20-25 people from here didn't completely book up Neuromod for the next six months. People are clearly finding out about it from somewhere.
- Oct 17, 2017
- 644
- Tinnitus Since
- 2005
- Cause of Tinnitus
- unknown - possibly hereditary
Man, they will disregard stuff you tell them about your own symptoms. I've had more than one doctor casually dismiss any link between tinnitus and eye floaters, which most of us know is real.
If he did an earlier trial what benefit would there be to doing the treatment over again? I mean, I know they are tweaking the parameters, but still.
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