Lenire — Bimodal Stimulation Treatment by Neuromod

[GlennS]

I'm having enormous difficulties with though, and that's having "clear thoughts".

I would really fish around for other hobbies if I were you. Not all of them require the same sort of organized mental focus as writing fiction, but Netflix and videogames are obviously too passive for you.

 

[uae96]

Again I want to mention that I was told Lenire works best for people with hyperacusis. Why? I don't know.

 

[jmasterj]

Again I want to mention that I was told Lenire works best for people with hyperacusis. Why? I don't know.

That is what they found in the trials. Most people with hyperacusis were "super responders". Interestingly enough they told a few users they aren't seeing that correlation as much with the release now.

 

[Lola808]

I am waiting for a reply back from Neuromod. I know COVID-19 has things locked up. Wonder when Neuromod might open up again.

 

[Croaker]

Again I want to mention that I was told Lenire works best for people with hyperacusis. Why? I don't know.

I hope that holds true with the Michigan device. I wonder if Shore has mentioned something similar?

 

[Bartoli]

That is what they found in the trials. Most people with hyperacusis were "super responders". Interestingly enough they told a few users they aren't seeing that correlation as much with the release now.

I wonder if those users are just desensitizing their auditory system and thereby improving their sound tolerance, making the hyperacusis and reactive tinnitus better too.

I'm aware not every hyperacusis patient benefits from desensitization through exposure (or white noise), but apparently some do.

Just a thought.

 

[alanisnotadj]

Significant improvement of my tinnitus in just 5 days. It's been two days in a row where it is hardly noticeable when I am outside. So glad I am back on the first settings. Let's see how things evolve.

 

[lucy_snow]

Significant improvement of my tinnitus in just 5 days. It's been two days in a row where it is hardly noticeable when I am outside. So glad I am back on the first settings. Let's see how things evolve.

Hi, do you have any hearing loss?

 

[alanisnotadj]

Hi, do you have any hearing loss?

35 dB at 8000 Hz then it goes downhill... I can't hear anything above 9-10 kHz.

I am 45.

 

[NeoKortex88]

35 dB at 8000 Hz then it goes downhill... I can't hear anything above 9-10 kHz.

I am 45.

I am 32 and can only hear up to 13500 Hz. Will I only be able to hear up to 8000 Hz at 45 years old too?

 

[Bartoli]

Significant improvement of my tinnitus in just 5 days. It's been two days in a row where it is hardly noticeable when I am outside. So glad I am back on the first settings. Let's see how things evolve.

Good to hear. Is your tinnitus pitch in your hearing range, or is it above the frequencies you can still hear? Trying to figure out if that is a predictor of what makes it work for some people. (Although they must have checked that out at Neuromod, I hope)

 

[alanisnotadj]

Good to hear. Is your tinnitus pitch in your hearing range, or is it above the frequencies you can still hear? Trying to figure out if that is a predictor of what makes it work for some people. (Although they must have checked that out at Neuromod, I hope)

Well, to be honest I don't really know. It seems like I have a variety of sounds, but I am pretty sure they are all in the high frequencies.

I don't remember Neuromod checking where exactly my tinnitus was. I am actually scheduled to do a HD "acouphénometrie" in Paris in July where they will test my hearing over 8kHz as I am really curious to find out where my hearing loss is.

 

[hans799]

2 weeks in to my restart of Lenire with the first setting and 2×30minutes a day.

Tinnitus is all over the place. My 2016 noise is fluctuating all over the place, sometimes it's nearly absent (as in, I have to concentrate to hear it with my ears plugged), sometimes it's annoying. Last time around I was having similar fluctuations at this same point in time. If it goes like last time, the fluctuations should clear up & I should begin improving compared to baseline in 1-2 more weeks. Really looking forward to it.

 

[DaveFromChicago]

Hello,

I'm probably a rare reviewer in that I took part in one of the clinical trials of Lenire in 2016 and have since gone onto purchase the treatment in late 2019.

It has significantly improved my tinnitus both times.

Before beginning the trial my tinnitus wasn't as bad as it was before purchasing the treatment. In the three years after the trial, I was exposed to a couple of innocent noise events. One was being on a speedboat, near the back, and the engines were very noisy. The other was simply watching a street parade that had a lot of drums and brass instruments. Both times I wore earplugs but perhaps didn't put them in early enough or they just didn't provide enough protection. Some ototoxic antibiotic ear drops (Cipro – very dangerous for tinnitus) may have contributed as well.

Before the trial my tinnitus was loud enough to prevent me from falling to sleep. I used to use headphones playing masking noises to help. Not as severe as some people's stories I've read on here but enough to be heard constantly throughout the day and difficult to be distracted from or tune out from.

When I started the trial in 2016 I very quickly experienced a pronounced step change in the volume of my tinnitus. When completing a treatment session my tinnitus went berserk, rapidly increasing and decreasing in volume before losing all hearing for a couple of seconds. When the volume of my hearing came back up to normal level the tinnitus was decreased significantly and stayed that way. It was a very strange sensation. Almost like my hearing system rebooted itself. This happened very early in the trial and no further improvements were made after but I felt that I had achieved the benefit available to me and frankly was delighted at that.

When I attended the Neuromod clinic in 2019 my tinnitus had worsened to 28 dB. At the 6 week assessment it had calmed to 22 dB and at the 12 week assessment it had reduced further to 14 dB. The changes here differed to the trial in that they occurred over the full span of the course. Along with the overall reduction in the loudness of my tinnitus it is also much less reactive. Before, even moderately loud noises would cause my tinnitus to fluctuate loudly as it seemed to chase the sound. Exercising as well would cause loud fluctuations. Now it is much more stable and predictable.

Since I finished the treatment in December 2019 there has been no negative changes in my tinnitus and I have been enjoying a much better quality of life. I know for some people the treatment hasn't worked and can imagine the frustration they must feel. But I would think Neuromod are devoting resources to understand why some people respond and some don't and if they can unlock that then they may be able to tailor the treatment to be effective across a broader range of sufferers. From my end I know I can consider myself lucky to have responded very well twice to the treatment and I'm genuinely very grateful to Neuromod for their help.

Any questions or comments please let me know, happy to help.

I am curious about why Lenire did not feature you as a prime interviewee, since your report of such success is far greater than anything mentioned by the other trial participants.

 

[JackJ]

I am curious about why Lenire did not feature you as a prime interviewee, since your report of such success is far greater than anything mentioned by the other trial participants.

After the followups from the trial they asked I would be willing be take part in a video testimonial of my experience with the device but I declined as I'm camera shy. In hindsight I should have.

Since completing the second round of treatment I've been approached again to take part in a testimonial. This time I agreed but it was cancelled. If they reschedule in the future and ask me again I would gladly oblige.

 

[alanisnotadj]

2 weeks in to my restart of Lenire with the first setting and 2×30minutes a day.
Tinnitus is all over the place. My 2016 noise is fluctuating all over the place, sometimes it's nearly absent (as in, I have to concentrate to hear it with my ears plugged), sometimes it's annoying. Last time around I was having similar fluctuations at this same point in time. If it goes like last time, the fluctuations should clear up & I should begin improving compared to baseline in 1-2 more weeks. Really looking forward to it.

It seems that we are going through the exact same thing. My tinnitus is also fluctuating wildly but with moments where it is very very low. Last night I fell asleep without any sound enrichment for the first time in 18 months. Normally I would wake up with screaming tinnitus but this morning was so peaceful I could not believe it. Then the tinnitus was on the up again this afternoon.

But so far the positives clearly outweigh the negatives.
Let's hope things keep going this way.

 

[UKBloke]

Normally I would wake up with screaming tinnitus but this morning was so peaceful I could not believe it.

Really pleased for you!

 

[ThomasC]

I've made my decision. I will give Lenire a try next year. There is something like 50% of success rate and there are very few cases of permanent worsening.

 

[Mathew Gould]

I've made my decision. I will give Lenire a try next year. There is something like 50% of success rate and there are very few cases of permanent worsening.

I haven't been paying attention to this thread in months... I thought Lenire was a failure basically. Did people start improving over time??

 

[ThomasC]

I haven't been paying attention to this thread in months... I thought Lenire was a failure basically. Did people start improving over time??

it's neither a failure nor a success. Trolls keep saying that is a complete fail but the reality is it works for some and it doesn't for others.

 

[Chinmoku]

Posting very little these days, as I am struggling really hard.

Quick question for anyone who has tried LENIRE: Have any of you tried LENIRE when your tinnitus was possibly due to ototoxic medication and GABA drugs in particular (benzos, gabapentin/pregabalin, finasteride, Z-drugs)?

As the tinnitus associated with GABA drugs withdrawal seems to be of a very specific kind, I'm wondering whether LENIRE could potentially help with that or not.

Thanks in advance.

 

[JackJ]

Quick question for anyone who has tried LENIRE: Have any of you tried LENIRE when your tinnitus was possibly due to ototoxic medication and GABA drugs in particular (benzos, gabapentin/pregabalin, finasteride, Z-drugs)?

Hi Chinmoku,

My tinnitus was caused by ototoxic medication. A powerful non-steroidal anti-inflammatory a doctor prescribed to me for some back pain as she was too nervous to prescribe a perfectly safe codeine pill. That was 8 years ago and I'm still living with the consequences. Over the years, at different times, it was made worse by Doxycycline and Ciprofloxacin. I quickly discontinued both of those when they caused my tinnitus to spike. Both are known ototoxics. To say I'm highly sensitive to ototoxic medication is an understatement. Also when you have tinnitus I believe it's much easier for it to be made worse than it was to get it in the first place.
I now use the attached as my ototoxicity bible.
It's an excellent reference.

You will need to be very careful with ALL medications in the future. Even common ibuprofen and aspirin can cause tinnitus.

Hopefully the attached will help you and anyone else concerned with ototoxic medication.

 

[GlennS]

your tinnitus was possibly due to ototoxic medication and GABA drugs in particular (benzos, gabapentin/pregabalin, finasteride, Z-drugs)?

Propecia causes tinnitus???

 

[hans799]

It seems that we are going through the exact same thing. My tinnitus is also fluctuating wildly but with moments where it is very very low. Last night I fell asleep without any sound enrichment for the first time in 18 months. Normally I would wake up with screaming tinnitus but this morning was so peaceful I could not believe it. Then the tinnitus was on the up again this afternoon.

But so far the positives clearly outweigh the negatives.
Let's hope things keep going this way.

Yesterday I did both my sessions in the morning and also took armodafinil, and because of all this stimulation I expected my tinnitus to be in high gear all day long. Got just the opposite, I had an unusually quiet day. I even had a few minutes in the car when I couldn't hear anything from the "orchestra", not even the high-pitched noises I usually hear over the car. Just silence and the purr of my Honda. Felt so light and liberating.

 

[Chinmoku]

Propecia causes tinnitus???

Anecdotally.
Edit
https://www.pfsfoundation.org/about-pfs-post-finasteride-syndrome/

I think @Don Tinny knows something about this iirc

 

[Chinmoku]

Hi Chinmoku,

My tinnitus was caused by ototoxic medication. A powerful non-steroidal anti-inflammatory a doctor prescribed to me for some back pain as she was too nervous to prescribe a perfectly safe codeine pill. That was 8 years ago and I'm still living with the consequences. Over the years, at different times, it was made worse by Doxycycline and Ciprofloxacin. I quickly discontinued both of those when they caused my tinnitus to spike. Both are known ototoxics. To say I'm highly sensitive to ototoxic medication is an understatement. Also when you have tinnitus I believe it's much easier for it to be made worse than it was to get it in the first place.
I now use the attached as my ototoxicity bible.
It's an excellent reference.

You will need to be very careful with ALL medications in the future. Even common ibuprofen and aspirin can cause tinnitus.

Hopefully the attached will help you and anyone else concerned with ototoxic medication.

Man that is quite a list. Thanks for that.
Our hearing system robustness is something where evolution has failed us big time.

 

[Mathew Gould]

Anecdotally.
Edit
https://www.pfsfoundation.org/about-pfs-post-finasteride-syndrome/

I think @Don Tinny knows something about this iirc

I've been taking finasteride since probably 2009 and never had any side effects. My tinnitus is 100% related to neck and jaw issues.

 

[lucy_snow]

@hans799 Are you going to use the device only with the first settings this time?

 

[Chinmoku]

I've been taking finasteride since probably 2009 and never had any side effects. My tinnitus is 100% related to neck and jaw issues.

Yea, I know a person who was severely affected. That's why there is a finasteride withdrawal syndrome group. However, it does not hit everyone, a lot of people have zero problems with it. Like with benzos, some stop without problems, others go through hell. This person I know had his testosterone dropping to dangerously low levels, he could not work anymore, he had to go on leave six months, slowly recover, then get back to work but he is not 100% yet, it will take years. A nightmare. Probably such cases are rare, but who knows. I have no data.

 

[hans799]

@hans799 Are you going to use the device only with the first settings this time?

Yes.

I also came up with an explanation on what might have happened to me (first timing made matters better, second timing made them worse).
Source 1: Neuromod's clinical trial protocol https://pubmed.ncbi.nlm.nih.gov/31573942/
Source 2: Susan Shore's 2018 study https://pubmed.ncbi.nlm.nih.gov/29298868/

Findings:

• PS1 is Lenire's first setting, for everyone. "PS1 consists of a sequence of tones mixed with structured wideband noise, in which the tones are synchronized in time with electrical pulses presented to the tongue" [1]
• PS4 was the second setting for me, though this varies per patient. "PS4: Similar to PS1, except that a randomly
  varying short delay (0-30 ms) is introduced between the tone and tongue stimuli" [1]
• Shore's trial has determined that the effect of bimodal stimulation is very dependent on timing. She found that delays as low as 5 couple ms mean the difference between increasing or decreasing tinnitus. "We show, in vivo, that auditory-somatosensory stimulation strengthened or weakened neural synchrony between fusiform cells, depending on the bimodal stimulus order and timing." [2]

This means that according to Shore's research, the difference between Lenire's PS1 and PS4 timings is large enough to cause completely opposite effects. So what I've experienced is explained by the research. And what's still better, this predicts that PS1 will work again for me.

By the way I had another of those nights when I just stayed up listening to how quiet my tinnitus is. Knock on wood, hope not to jinx it, but maybe I've entered the "Lenire is working its magic" phase again.