Lenire — Bimodal Stimulation Treatment by Neuromod

[Melike]

Is there anything we know about how the treatment affects other mysterious tinnitus related symptoms like aural pressure, TTTS, head rumbling/buzzing, clogged ears etc.?

 

[friend74]

Still don't know if I'm going to register now or wait for the first responses. I just checked and one flight would be around (moderate) 80 Euro and would last 2 hours from Germany. With some luck I don't have to stay overnight.

 

[acute]

They proposed me October 22nd, pretty late... I'm from Poland.

I'm from Poland.

17.09.2019 <- date for me.

Did they call you or just send an email?

This morning I have been trying to get in touch with them by phone, but it has been impossible because the connection was very bad...

I am so anxious because at this rate I will get to try Lenire next year... and I applied the release day. I do not want to wait so many months in this living hell.

It's impossible for me to contact with them, and they do not contact me anyway. It's frustrating. I don't know what to do.

 

[Allan1967]

It's really weird. Been talking about this since last year. Ups/downs/uncertainties. You want it to work, but you also know it might not or maybe not as much as you hoped for or maybe it will exceed your expectations.

And suddenly my journey is upon me. I've said this before - God does not allow something to happen to you that He thinks you can't handle and even if you don't believe in God I do believe the Universe manufacturers things to happen, because every cloud has a silver lining. Things always work out in the end. It might be a long dark road but eventually you reach the end.

I knew on Monday morning this week I'd be getting my call that day. I just knew. I even answered my mobile that said 'Private Number' with a 'Hello Neuromod' and I was greeted with that sweet female Irish accent.

I don't know why I'm writing this, its just weird. In a nice way.

 

[Annpann]

I have just accepted my appointment for 11th October. I was hoping for a closer date but will take what I can get!

 

[RODRIGO]

Got my date for 8th October

 

[KotaDomowa]

@acute - They sent an e-mail.

 

[drcross]

Hi Guys, I've been making some posts on the Reddit tinnitus page regarding my experience with the Neuromod device so far and someone mentioned that the information would be useful here:

If anyone has any questions please let me know. The initial assessment was on Tuesday, I'm about to get my device in four weeks.

If you want me to take part in a podcast or whatever I'm down for it.

 

[Allan1967]

Hi Guys, I've been making some posts on the Reddit tinnitus page regarding my experience with the Neuromod device so far and someone mentioned that the information would be useful here:

View attachment 30435

If anyone has any questions please let me know. The initial assessment was on Tuesday, I'm about to get my device in four weeks.

If you want me to take part in a podcast or whatever I'm down for it.

Did you get the feeling you were being screened for suitability?

Surely there has to be more science to this than just zapping our brains with a DC voltage?

Did you get any idea of what sort of outcome you could expect?

 

[annV]

Surely there has to be more science to this than just zapping our brains with a DC voltage?

Read up on bimodal stimulation. It's all about the combination of sound and electrical stimulation. And the sound has a special timing, it can't just be any sound.

 

[Jack Straw]

I don't think they have any more info on the US rollout than we've already speculated. If they can assure me of a 1-week or less turnaround between the assessment and getting fitted I can probably justify flying out there and paying for an AirBnB. I don't think I'd be able to claim it as a vacation, though, not without pushing my vacation back 3 months which I really don't want to do. I'd have to work remotely during that week and somehow explain it (and the followup trips, which would be during the work-week for sure) to my boss.

The other big question mark is whether this treatment could possibly be covered by US health insurance. I doubt they'd cover an international treatment. If it IS coverable, it would be after it hits the US. I'm not that hardup for cash but I don't want to waste money needlessly either.

Technically this time off could be considered sick time from work because you are doing it for a medical procedure. So you can split it between vacation and sick time.

 

[DaveFromChicago]

To Allan1967:

Electrical stimulation of the Vagus nerve has considerably helped many people with Epilepsy.

It is also used to restart heart functions.

"Zapping brains with DC voltage" may in fact be very beneficial (given that the brain is a 2 billion cell electrical device).

As AnnV indicated, it is as if an important electrical dimension has been added to the previous ACRN Sound Methods.

However, we will finally get the real readout from you first pioneers regarding this.

Also, notice that $2,430.36 is in fact less than anticipated.

I keep in mind that in the 5 and one half years that I have had this, this is the first potential for truly exciting developments regarding treatments.

 

[GlennS]

I'm about to get my device in four weeks.

Hmm... A month between assessment and fitting. I wonder how much of this might be down to waiting for the product to come back from the factory?

Technically this time off could be considered sick time from work because you are doing it for a medical procedure. So you can split it between vacation and sick time.

Well, I work in a startup and haven't taken a formal vacation in almost three years. Yes, it's that kind of a work environment. I also have a strict policy of staying "in the closet" outside of my closest inner-circle. Anti-discrimination laws or not, I think it counts against you if your employer thinks you're damaged goods. I've been very very fortunate to have carved the career I have despite this condition and the knock-on psychological impacts. I hear so many stories here from people who classify themselves as unemployable and who are presumably falling onto disability, meds, etc... So I have to think this through.

 

[Allan1967]

To Allan1967:

Electrical stimulation of the Vagus nerve has considerably helped many people with Epilepsy.

It is also used to restart heart functions.

"Zapping brains with DC voltage" may in fact be very beneficial (given that the brain is a 2 billion cell electrical device).

As AnnV indicated, it is as if an important electrical dimension has been added to the previous ACRN Sound Methods.

However, we will finally get the real readout from you first pioneers regarding this.

Also, notice that $2,430.36 is in fact less than anticipated.

I keep in mind that in the 5 and one half years that I have had this, this is the first potential for truly exciting developments regarding treatments.

I know they are doing a study on the same thing with stoke victims for them to regain the use of lost limbs [like left hand use] right here in Newcastle in the UK so there has to be more to it than 'just zapping our brains'.

Is there anything anywhere that explains the science behind it in layman's terms?

 

[Autumnly]

Is there anything anywhere that explains the science behind it in layman's terms?

This is about the device by the University of Michigan (Susan Shore's team):

"The brain, and specifically the region of the brainstem called the dorsal cochlear nucleus, is the root of tinnitus," said Susan Shore, the U-M Medical School professor who leads the research team. "When the main neurons in this region, called fusiform cells, become hyperactive and synchronize with one another, the phantom signal is transmitted into other centers where perception occurs.

"If we can stop these signals, we can stop tinnitus. That is what our approach attempts to do, and we're encouraged by these initial parallel results in animals and humans."
[...]
This sets off a process called stimulus-timing dependent plasticity, or STDP, which was first explored in animals and led to long-term changes in the rate at which the nerves fire. The approach aims to reset the activity of fusiform cells, which normally help our brains receive and process both sounds and sensations such as touch or vibration—what scientists call somatosensory inputs.

Link to the article with videos

 

[Allan1967]

This is about the device by the University of Michigan (Susan Shore's team):

"The brain, and specifically the region of the brainstem called the dorsal cochlear nucleus, is the root of tinnitus," said Susan Shore, the U-M Medical School professor who leads the research team. "When the main neurons in this region, called fusiform cells, become hyperactive and synchronize with one another, the phantom signal is transmitted into other centers where perception occurs.

"If we can stop these signals, we can stop tinnitus. That is what our approach attempts to do, and we're encouraged by these initial parallel results in animals and humans."
[...]
This sets off a process called stimulus-timing dependent plasticity, or STDP, which was first explored in animals and led to long-term changes in the rate at which the nerves fire. The approach aims to reset the activity of fusiform cells, which normally help our brains receive and process both sounds and sensations such as touch or vibration—what scientists call somatosensory inputs.

Link to the article with videos

I'm guessing Lenire works on similar or exact same principle?

 

[Autumnly]

I'm guessing Lenire works on similar or exact same principle?

Yes, this timeline by @kelpiemsp explains this really well:

1. The University of Minnesota did the original study.
2. Shore picked up on it and moved it forward.
3. Neuromod then picked up on it and moved it forward.
4. Both Shore and Neuromod fumbled initially.
5. Neuromod then brought in the lead researchers from the University of Minnesota to help understand why they failed.
6. Shore announces the preliminary success.
7. Neuromod announces success and races to put the device on the market (industry first funding).
8. Shore wraps up her trial, plans to release device if successful (academic first funding).
9. The University of Minnesota moves to phase 3 of a smaller trial of all three but holds the keys to the original experiments and data (just might know something the other two don't).

 

[Jack Straw]

Hi Guys, I've been making some posts on the Reddit tinnitus page regarding my experience with the Neuromod device so far and someone mentioned that the information would be useful here:

View attachment 30435

If anyone has any questions please let me know. The initial assessment was on Tuesday, I'm about to get my device in four weeks.

If you want me to take part in a podcast or whatever I'm down for it.

They told you to tell them when the white noise masked your tinnitus?

That is going to be an issue for some of us with loud tinnitus that is hard to mask. The noise level might get up to dangerous levels if that's the case.

 

[Jack Straw]

 

[KMc24]

My tinnitus fluctuates greatly from day to day. Today it is mild, yesterday moderate, and 3 days ago rather loud. It usually follows this predictable pattern. What parameters will they use if your tinnitus fluctuates like mine? Depending on what kind of day I'm having setting the device would vary greatly. If they set it based on hearing loss instead of tinnitus loudness that would be a different story.

 

[Watasha]

Did they call you or just send an email?

This morning I have been trying to get in touch with them by phone, but it has been impossible because the connection was very bad...

I am so anxious because at this rate I will get to try Lenire next year... and I applied the release day. I do not want to wait so many months in this living hell.

It's impossible for me to contact with them, and they do not contact me anyway. It's frustrating. I don't know what to do.

I obviously cannot speak for your experience. What I can say is that you've had this experience for a couple of months according to your profile. It is normal in the beginning to feel tormented etc. Even if the experience remains, the overwhelming majority of people move past this stage. It is also possible that yours could dissipate and improve on its own. Unless you responded differently on your questionnaire, I imagine they haven't prioritized you due to its recent onset. Hang in there and in time, waiting a few months likely won't seem as big of a deal.

 

[Allan1967]

My tinnitus fluctuates greatly from day to day. Today it is mild, yesterday moderate, and 3 days ago rather loud. It usually follows this predictable pattern. What parameters will they use if your tinnitus fluctuates like mine? Depending on what kind of day I'm having setting the device would vary greatly. If they set it based on hearing loss instead of tinnitus loudness that would be a different story.

Mine varies too... generally from severe to moderate to manageable but by and large fcuking loud, but I'll be pretty sure that they are aware of that and if I remember rightly it is based on your hearing profile.

 

[Lucifer]

View attachment 30438

What do you use to add text above a gif?

 

[Watasha]

So do we have a timeline on any dates set in stone for individuals to receive their devices at this point?

 

[Candy]

Appointment on 12th July. I was struggling to get hold of them... Finally! Thought I'd missed the boat...

Fingers crossed I'll be suitable.

 

[ruud1boy]

This morning I have been trying to get in touch with them by phone, but it has been impossible because the connection was very bad...

It's impossible for me to contact with them, and they do not contact me anyway. It's frustrating. I don't know what to do.

E-mail them and stick a read receipt on the message - info@neuromodmedical.com
I'm sure they're not deliberately ignoring you, but it isn't impossible that your original expression of interest might have got lost in their system.

A polite e-mail enquiring if you are still in their 'to do' pile I'm sure would do the trick.

 

[Jack Straw]

What do you use to add text above a gif?

Mematic app.

 

[Rio80]

Has anyone on here from US or Canada received an appointment invitation earlier than October/ November?

 

[Melike]

I am incredibly excited for everyone who got their appointments booked although I will have to wait at least a year to save enough money for the treatment & other expenses. I'll have to do a serious popcorn investment for the next couple of months.

 

[grate_biff]

Got an e-mail today. December 20th for me.

But first I'm going to e-mail them asking what could exclude me.

No way am I going to Ireland, with my fear of flying, to be told I´m not eligible.