Lenire — Bimodal Stimulation Treatment by Neuromod

Holy shit! Congrats! You better keep us updated.

 

Waiting for my call... Did you call them before?

Mmhh I read that you've had tinnitus for a short while so you're in a perfect habituation time frame... Maybe that's why I didn't get the call.

Good luck with it @Cojackb.

 

Yep, I'm in England so hopefully patients from overseas aren't an issue. The very friendly lady on the phone was quick to remind me they're based in Dublin.

Absolutely, If they decide the treatment might help - you guys will get all the updates I can provide.

 

I agree. They have to.

I contacted them regarding US availability and they got back to me today. They said they are working hard to get it through the FDA, and though they do not encourage going to Ireland for a device, the clinic will not be checking residency. They are still strongly recommending the follow up appointments.

So essentially, even if it's not approved in your country (Spain), they won't stop you from going over there and getting it, and they still strongly recommend that you are able to attend the follow up appointments.

 

@Cojackb you've only had tinnitus for 3 months? Isn't that too early for trying Lenire?

 

Has anyone discovered what the follow up appointments actually involve?

Is it about changing the settings to drive further improvement such as in TENT-A2 or is it about something else?

 

From what I have read yes, that's what they are doing, and it seems at the end of it they will do a long term use plan.

 

A question that must be asked, although I do highly doubt Neuromod would do that.
Presumably @Tinnitus Talk's data collection would help us detect if such a pattern exists.

 

How long was it from when the email came out and you applied?

Just wondering if they are reviewing applications as they come in; in alphabetical order; location or something else?

 

Hey Alex, my current stint of tinnitus has been since end of January / early February. Contrary to my intro thread on here I'd actually had very mild tinnitus and hyperacusis for years as a teenager without realising (too young and naive to know any different).

I got so used to it and with it being that mild that I managed to forget it was there.

It's not since this more recent and severe flare up that I've realised I had tinnitus and hyperacusis for all those years and it's now become a lot worse.

Apologies for the confusion!

 

I applied the same day the email came out, in the afternoon.

Meant to be migrating to New Zealand at the beginning of July and really wasn't expecting a response, let alone an appointment before then.

I've got no idea how they're booking people in and if the question isn't answered by the 25th I'll gladly ask it while I'm there!

 

Hey Candy,

I didn't call them - just filled in the appointment form online and waited.

Sincerely hope you're right about habituating to this new level of tinnitus. It's deafening!

Fingers crossed you get a call back soon!

 

14 days is next Wednesday Allan. Sit tight.

 

So did I. Email came out about 3.30pm ish. I applied by 4.30pm. Were you before or after that please? How did you describe your tinnitus to them? Mild? Severe?

 

Yeah I know. You can't help but think maybe you won't fit.

 

What time!?!?!?!?! Is it fastest finger first?

I registered within 30 minutes of receiving their e-mail and I don't think Allan1967 was far behind me, so we're both checking our phones far too regularly. I've never answered as many unknown numbers.

 

It might be totally random too. I sent mine in 15 minutes after I got the email.

 

What time did you get the e-mail tho'?

 

I think it's random. I applied the same day too and I haven't received any call. I am afraid of Neuromod's call though, I'm not good at English, but I'll try

I'm wondering... If Lenire reduces or eliminates our tinnitus, if we are exposed to a noisy place or concert, would the tinnitus appear again?

I don't know if our ears are damaged for life and we must take care of them for the rest of our lives. For example, not to use headphones and avoid concerts and noisy places ever again.

 

As long as you don't present as a gibbering wreck, screaming that Lenire is your only hope, I think they'll be happy to take your money.

I found something new today, from their clinical trial exclusion criteria. They noted that a score of 120 or above on the 'State Trait Anxiety Inventory' would rule someone out of the trial. Never heard of this before, but a bit of searching gives an idea that they're nervous about taking on patients who are clinging on by their fingers. Obviously they don't want to be a footnote in any 'adverse patient outcomes'.

I did the questionnaire - it took a while to find one online - and came out at 90, so fingers crossed I'm stable enough for their risk assessments.

 

@Allan1967 @ruud1boy

I left it a couple of hours before applying. I definitely wasn't as quick to the post as you guys by the sounds of things.

I described my tinnitus as mild/moderate, I wouldn't describe it as severe (regardless of how it makes me feel).

FYI they called through on an Irish number, not withheld.

I sincerely hope you guys get the phone calls you're waiting on very soon!!

 

Absolutely - if they help you get rid of it, there's nothing to say it won't come back.

That means headphones on low at all times, if at all, no concerts, no firework displays, no firing ranges - at least not without some really serious hearing protection.

That's my plan anyway - each to their own.

 

Probably yes. You need to take care for the rest of your life, even after years. It doesn't fix the cause of the problem.

 

It would be safest to take ear plugs to loud places, even after treatment. I recommend Eargasm.

As for ear damage, there is research underway to address that. The product that seems closest to market at this time is Frequency Therapeutics's FX-322. They plan to start their phase 2 trial by the end of the year.

 

Ah... I might have scored my tinnitus quite high, that’s what I suspected.

 

Good luck! Just think long-term, if not now, perhaps in the near future. Also, please let us know how it goes!

 

How are you going to manage going back 3 times if you're migrating to New Zealand?

 

I'm Australian, but am planning on being in Europe from September for three months. Going to Germany would be more convenient for me than Ireland, so I rang Neuromod and asked if I should book in with them now or wait to see if Germany would be an option. The woman suggested waiting if I was coming in September. The line wasn't very good (Skype!), but I think she went on to say they were working on options in Germany. I asked if she knew what city and she said no.

So, from that it sounds like they're expecting a German option in the next month or so. Hope that is helpful to some European readers! I wonder where they will base themselves in Germany - would it probably be Berlin??

 

All of that is going on hold if Lenire offer the treatment. Fortunately the situation is flexible enough to be able to move dates around.

 

Holy shit a German clinic would make such a huge difference for us continental Europeans. Can't wait! I also hope they'll speak English as my German is a bit rusty...