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Lenire — Bimodal Stimulation Treatment by Neuromod

#6,061
ChrisBoyMonkey said:
I'm not going to ask too much to help keep you anonymous but have you seen any reduction in your tinnitus?

You don't have to answer if you don't want to either.
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I definitely want to, but giving this forum one anecdotal data point based on my experience would be unfair to you all and to the research. I don't know how my experience compares to any others in the trial, and it would suck to comment and give everyone a singular nugget of insight that may be an outlier. Plus, I want this research to really lead us somewhere as a patient group.

I will say that this is a superlative research team. They are effectively pouring their lives into finding a treatment for tinnitus.

Also, I will say that this trial is definitely moving forward as fast as they can. They are busy, and working hard on this - so to all of the comments about the slowness of the research, I assure you, no one is in a holding pattern at this time.
 
#6,062
JJ4211 said:
Believe me, I want to, because as someone who has this junky tinnitus condition, I know how much I thirsted for info, signs of progress, etc. That said, I don't want to screw over the trial or say anything that would compromise their scientific approach, or influence perception by the scientific community. I've been lurking for a while on this board, refraining from discussing it, but the question about the placebo vs. true treatment was something that I felt like I could comment on. Their experiment design, from my non-scientific view, is very strong.
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It's cool, thanks for being part of it anyways. We have a thread dedicated to it if you would like to give it a read.
 
#6,063
JJ4211 said:
I definitely want to, but giving this forum one anecdotal data point based on my experience would be unfair to you all and to the research. I don't know how my experience compares to any others in the trial, and it would suck to comment and give everyone a singular nugget of insight that may be an outlier. Plus, I want this research to really lead us somewhere as a patient group.

I will say that this is a superlative research team. They are effectively pouring their lives into finding a treatment for tinnitus.

Also, I will say that this trial is definitely moving forward as fast as they can. They are busy, and working hard on this - so to all of the comments about the slowness of the research, I assure you, no one is in a holding pattern at this time.
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That alone is reassuring. Thank you for your insight.
 
#6,065
Lucifer said:
@JJ4211

Do you experience hyperacusis? If you do is it you find things too loud or painful?
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At initial onset of tinnitus, I experienced hyperacusis to a moderate degree. Over the first two months it largely subsided. I still have fleeting aspects of it where conversation is just too loud and screechy for me. I do not consider hyperacusis a major / primary issue for me.
 
#6,066
threefirefour said:
It's cool, thanks for being part of it anyways. We have a thread dedicated to it if you would like to give it a read.
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Thanks for sending! Admittedly I've read nearly all of it as I was lurking around. It actually encouraged me to perform some independent research about the trial and Dr. Shore, leading me to apply to the current study.

So thank you, Tinnitus Talk community, for the super useful content.
 
#6,067
JJ4211 said:
I definitely want to, but giving this forum one anecdotal data point based on my experience would be unfair to you all and to the research. I don't know how my experience compares to any others in the trial, and it would suck to comment and give everyone a singular nugget of insight that may be an outlier. Plus, I want this research to really lead us somewhere as a patient group.

I will say that this is a superlative research team. They are effectively pouring their lives into finding a treatment for tinnitus.

Also, I will say that this trial is definitely moving forward as fast as they can. They are busy, and working hard on this - so to all of the comments about the slowness of the research, I assure you, no one is in a holding pattern at this time.
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That is really awesome that you are part of the trial!

I tried to get in on it last year but, as of the time that I inquired, they didn't allow anyone to move to Ann Arbor for it.

Good luck and I hope it will help you in your journey to getting rid of your tinnitus, or at least improving it significantly.
 
#6,069
Hi everyone,

Is anyone keeping an overview of who has actually improved their tinnitus by using Lenire (such as RedKnight, Lucky97, ...)?

Do we have an idea how many Tinnitus Talk users are actually using Lenire now?

In other words, can we make a preliminary assessment in percentage of actual improvers?

I know there's been some posts about it, but maybe someone is maintaining a statistical overview?

Thanks so much.

PS: I'm new here.
 
#6,070
JJ4211 said:
You can feel the electrical stimulation in both devices, however it is so light of a sensation, by design, that you'd never be able to tell if the signal timing was drastically different in each device, rendering one a placebo and one a treatment, but which is which, is left undetectable to the trial participant.

I know this as fact because I am in the current trial.
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That's awesome.

But what bothers me with her device, is the fact you must have enough hearing at the tinnitus pitch.

There are no hearing aids that cover frequencies above 10 kHz. How can you benefit from this device if your tinnitus pitch is above 10 kHz and you have at least moderate hearing loss in that range?
 
#6,071
JJ4211 said:
I definitely want to, but giving this forum one anecdotal data point based on my experience would be unfair to you all and to the research. I don't know how my experience compares to any others in the trial, and it would suck to comment and give everyone a singular nugget of insight that may be an outlier. Plus, I want this research to really lead us somewhere as a patient group.

I will say that this is a superlative research team. They are effectively pouring their lives into finding a treatment for tinnitus.

Also, I will say that this trial is definitely moving forward as fast as they can. They are busy, and working hard on this - so to all of the comments about the slowness of the research, I assure you, no one is in a holding pattern at this time.
Click to expand...
I am also in the trial and can confirm things are moving forward. It's a busy team.
 
#6,075
Ivkopivko said:
Congrats!! What do you mean by "moving forward"? I know, not an easy question to answer, but would be thankful even for some pieces/info.
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I'm not commenting on the efficacy of the treatment. Just that they are currently performing trials. I signed an NDA so I can't discuss much other than confirm the trial is underway.
 
#6,077
I would kindly remind anyone who is about to start using Lenire to take part in our Lenire User Experience Group.

To further increase our sample size, every participant is important. I've seen some people here with appointments due soon who have not yet become part of the group, so please consider helping us collect more data. It won't take that much time from you.

lenire-neuromod-user-experience-group-desktop.png

@PeterPan has done an incredible amount of work managing the group. It humbles me and @Hazel to see his dedication to the project. He is an outstanding project manager.
 
#6,078
Ivkopivko said:
Congrats!! What do you mean by "moving forward"? I know, not an easy question to answer, but would be thankful even for some pieces/info.
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What I meant by 'moving forward' is that I always got a sense of urgency that the team is pushing to complete the trial as quickly as possible. They want this data, but they really want a solid, reputable experiment. I think they'll get both.
 
#6,079
JJ4211 said:
Also, I will say that this trial is definitely moving forward as fast as they can. They are busy, and working hard on this - so to all of the comments about the slowness of the research, I assure you, no one is in a holding pattern at this time.
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Do you happen to know how many trial participants there are?

The big advantage Neuromod has over Susan Shore is a much larger sample size. As you say, your experience would be an isolated datapoint but a very small trial of only a couple dozen subjects would seem to not carry as much weight as a trial closer to Neuromod's TENT-A2.
 
#6,080
Flight booked, £40 return from England.

My appointment is in April. I have noise induced hearing loss + tinnitus. There is still no evidence Lenire will do anything for me. So I'm unsure if I should be going through with it if I'm accepted for the treatment.
 
#6,081
GlennS said:
Do you happen to know how many trial participants there are?

The big advantage Neuromod has over Susan Shore is a much larger sample size. As you say, your experience would be an isolated datapoint but a very small trial of only a couple dozen subjects would seem to not carry as much weight as a trial closer to Neuromod's TENT-A2.
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Hi Glenn - I'm not sure how many participants are in the trial, or how many they are targeting. I agree, the bigger the better for sure.
 
#6,085
I have an appointment for late February. Not sure I am going to go ahead with Lenire yet as I still have trouble with my eustachian tube. My thinking is that I will either get rejected or any progress will be undone with my incurable (?) problems. Doctors have no clue.

Anyone in the same boat with existing eustachian tube issues thinking of trying neuromodulation?
 
#6,086
Just received my invite... February 20th at 15:15. I'll be there after about 15 hours in transit from Cocoa Beach, Florida. I signed up for an appointment in July and I've had tinnitus for 5 years. My tinnitus was from loud noise from aircraft because I worked for Northwest/Delta for 30 years and after that I bought a bar with a very loud stereo system and bands to appease the college kids that I proceeded to get inebriated so they would pay me handsomely for my services... they did... But messed my little ears up with the tinnitus.

I can modulate my tinnitus by clenching or moving my jaw around so I guess I have both noise induced tinnitus and somatic tinnitus?

I have habituated to the fact that I hate this affliction so I've done my best to try and play Jedi Mind Games with tinnitus... meaning doing my best to ignore it. Sometimes it works... sometimes not.

I will post my experience with Lenire as it unfolds... So Ireland... Here I come...
 
#6,087
I just signed up 2 weeks ago, late to the party. They finally replied and said they are overwhelmed and I may get an appointment in mid 2020... 6 months out I guess.

They said they are going through the list and making sure who is confirmed and who is not using their date.

@Sytex75... at least the flights are free if you can get on. :)
 
#6,088
Rafaa said:
Anyone in the same boat with existing eustachian tube issues thinking of trying neuromodulation?
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I have TMJ/eustachian tube problems, more acute on my left side which is also my bad T ear. For instance, just moving my jaw around or swallowing I literally hear a crinkling sound in my ears. There's like a persistent pinching or blockage, mostly on the left side. When I hold my nose and try to blow out or suck in, air really doesn't want to move through my ears. I'm interested in seeing if anything can be done mechanically that might relieve some of the tinnitus, assuming this phenomenon is part of the problem, but the audiologist wanted me to get an MRI done and after reading about them here I am terrified of getting in one.
 
#6,089
Jan64 said:
When did you apply?
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I applied in July 2019 when I was more of a believer, at the moment I'm not.

I was hoping this could rid me of a lot of grief, but when you hear people have done 12 weeks, no improvement, not good. Mentos for example, not impressed.

For £2000 plus I need some relief lol.
 
#6,090
Alright everyone. I just arrived at the clinic for my 6 week follow up. Although it's really 7 weeks since it was New Year's and all. Anyway I will post in the Lenire User Experiences thread in the next couple of days for sure. For me it has definitely been worth the cost and effort for sure. If anyone is in Dublin today you can holla and we go grab a Guinness :)
 

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