Lenire — Bimodal Stimulation Treatment by Neuromod

@kelpiemsp
Did you experience an increase in your tinnitus after sessions as many people that are using the Lenire device are reporting ?

 

Neuromod are not in the tech area. Tech area is much closer to the city center.

 

What? The whole deal with Lenire is that hyperacusis sufferers are supposed to be "super responders".

 

Just to clarify. Lenire has NOT given me hyperacusis. I already have hyperacusis in respect of certain sounds. Motorbikes, crockery, sirens, dogs barking, babies crying etc which is unchanged. The 'loudness' I hear is just that. Everyday speech etc just sounds 'louder' but not painful. I just take my hearing aids out and it's a normal level. Hope that helps. I don't know if anyone else has an opinion on their hyperacusis after using Lenire. Just my experience. Should this go in the Lenire User's thread?

 

@Liz Windsor thank you for posting in the user experience thread. Being that tinnitus has been with you since 2012 I find your latest journal entry particularly encouraging. Even if the positive results currently last only a few hours per day, it's a good start. Hopefully things will continue to get better for you.

 

Could that mean your hearing is actually improving? Maybe the loudness is more of what you are supposed to experience with more normal hearing?

 

@Fifth Business,

As @Phi said Neuromod's on the outskirts of the city.

Figuring out how to get there was slightly painful so here's a guide, hope it helps someone:

Neuromod Medical is in a large hospital complex called Hermitage Clinic. It is fairly close to a hotel, the Clayton Hotel Liffey Valley, and there's a bus (the Airport Hopper, number 767 or 777) that goes to it directly from the airport.

The bus is a bit confusing because it has no schedule (or at least doesn't adhere to the one that is on Google Maps) and its bay isn't marked either. So you gotta go to the bus terminal at the airport and wait until you physically sight the bus - it'll be red and prominently display Airport Hopper on the side. It's a van, not a "full" bus. Comes by twice a hour or so, and waits a few minutes before it leaves. Then you need to ask for a ticket to Liffey Valley which will be 11 euros and can be paid in cash or with card. Ride time will be around 30 minutes.

Google Maps will be able to guide you from there to the Hermitage Clinic, it's a roughly 15 minute walk through a non-pedestrian area (major roads and roundabouts). There is pedestrian pavement, though.

Once you get to Hermitage you'll see Neuromod posters to reassure you that you're in the right place. You don't need to check in anywhere, head up right away with the elevator to the 2nd floor where Neuromod will be at the end of a hallway in Suite 18.

If possible, bring euro coins to feed to the vending machines, Hermitage's cantina is cool but had a very long line when I was there.

 

Just for the sake of clarity;
- Neuromod are based in the tech district in the city centre somewhere.
- Neuromod Medical, who we're all going to see and and are actually dishing out the devices, are based in a small suite of rooms in a hospital about 10 miles west of the city.
- The 'Airport Hopper' service does have a set timetable - https://airporthopper.ie/tallaght-timetable/ - but they very often aren't able to stick to it. They run 2 services to / from the airport, going to/from Tallaght or Maynooth. Both services follow the same route from the airport until you get to the 'N4 Footbridge', which is a 10-15minute walk to the hospital, so it doesn't really matter which one you get on.
- Neuromod are in Suite 38, on the 2nd floor, not Suite 18. You'd probably end up with a confused Irish paediatrician looking at you blankly in Suite 18.

 

What's the cause of your tinnitus?
Do you have hyperacusis?

 

It's amazing to read that this device is actually helping some people. So much has happened since three years ago!

 

No hyperacusis. My tinnitus and hearing impairment are noise induced. Too many gigs & clubs when I was younger.

 

User Experience Group Update!

Hello,

Just a short update on the user experience group. This group is for users who have, or intend to, purchase a Lenire and who wish to share their experience in an objective manner.

So far we have 16 baseline surveys completed (these are completed around the device fitting date) and 6 surveys for the 6 week milestone. We have a total of 36 users, which is a good sample size.

We're seeing pretty good response rates, so THANK YOU very much for completing your surveys!

We expect all the baseline surveys to be completed by the end of the year, and all the 12 week surveys completed around end of March 2020.

We will publish anonymized information on the baseline information we have around the end of the year (this will provide some useful information about the characteristics of tinnitus, but nothing on Lenire).

And then we will publish anonymized information on the impact of the Lenire around April 2020.

If you have recently decided to purchase a Lenire, please join our User Experience Group (banner at the top of this thread)! If you have joined already and have a Lenire, thank you very much for participating!

PeterPan.

 

How big is your hearing loss?

 

@Liz Windsor My apologies, I've misinterpreted the 'uncomfortably loud'. I have hyperacusis and tinnitus and I'm terrified in the thought of this having a bad impact on my sound tolerance which is already very low.

To anyone battling with tinnitus I want to say something, it can get much worse, so take good care of your hearing and sound exposure. I thought it was hell suffering from tinnitus for years but when my hyperacusis came in it went down to a whole new level. Too bad there's no studies and treatments focusing on this horrible condition.

I need to have a slight ray of hope that Lenire maybe, just maybe, make my hyperacusis a bit better.

 

LOL. Apologies. I did feel I was overconfident about knowing that number from heart.

 

@Allan1967 how's your status?

 

@Redknight I just read your recent post in the Lenire User Experiences thread. So they’re only planning on expanding to Germany this year?

When I was on the phone with them they told me that they were in current talks with the FDA for US approval and that it was submitted . Did they say nothing about this when you visited?

 

Do they think that you are not benefiting because of your hearing loss. Any insights?

 

Are you in Dublin? Want to meet up?
Or anyone else?

Very bored waiting for my device fitting appointment on Oct 1.

 

Do you live in that area?

 

Close to Temple Bar.

 

Ah I see. I don't have my appointment yet, but I'll let you know when I do! I'm a big Guinness fan so I've always seen that as a plus of trying to get over there lol

 

They did; they said the same to me, that FDA approval was being processed but that it was a very lengthy process.

 

I would have mate, but I'm back home now. I live in Northern Ireland, so just drive up and down for appointments. I did get the chance to grab coffee with @Cojackb which was really nice.

 

No need to apologise. I just wanted to make sure no-one misinterpreted my comment about sounds being louder. It hasn't worsened the hyperacusis which, as you say, is horrible and adds another level of difficulty to the tinnitus. Fingers crossed we get some help with that as well in the near future. Good luck. Liz.

 

Has anyone who got an email offering the earliest possible appointments in 2020 (and an update on that soon) heard back from Neuromod yet?

 

Mine's worse than yours.

 

Not yet.

 

The last contact I had with them was dated August 20th (I originally contacted them in July) and they said "The 2020 appointments will be set up late September/October and we will contact you then regarding and update on appointments."

Hopefully any day.