Lenire — Bimodal Stimulation Treatment by Neuromod

[Ruse]

In this case what would be the point of sending them an audiogram upfront if they were to do it on-site anyway?

To check that you are not disqualified for hearing loss I would imagine.

 

[GlennS]

In this case what would be the point of sending them an audiogram upfront if they were to do it on-site anyway?

I'm thinking for liability purposes they probably wouldn't approve you based on an off-site audiogram but they could reject you (which is what I would want to save me the trip).

 

[LongWait]

What happens if your hearing is acceptable but you wear hearing aids to mask the high-frequency hearing loss, would that be OK?

I can clearly hear speech. Mild/moderate hearing loss.

 

[jmasterj]

I sent in my audiogram last night. This audiogram was taken within the last year. Based on their criteria I should be fine. I have no loss up to 3kHz then a slow drop up to 8kHz which my left ear is at 45 dB loss and right is around 40 dB loss. I would be considered to have mild/moderate loss. Though I feel my tinnitus is so loud it masks the upper range. I will post here if I hear anything back.

 

[Meiro]

@Hazel, @Liz Windsor and @Steve are confirmed to be attending the networking event, the conference, and the expo. I believe @Candy may attend as well, not confirmed though.

We'll also have a booth, this time for both the conference and the expo (last year we only had a booth for the expo).

Here's our thread about it:
2019 Tinnitus Expo in London on 14 September

We may be crossing paths with Neuromod and having a chat

Thanks, I hope you will have the opportunity to ask them what's up

 

[AliceW]

Do you think Lenire could also treat symptoms of vibrations/myoclonus of the eardrum? (Caused by muscles...)

 

[BigNick]

Do you think Lenire could also treat symptoms of vibrations/myoclonus of the eardrum? (Caused by muscles...)

Mine have improved a lot. It didn't cross my mind at first. Someone else mentioned that their ENT said it would though, due to the stimulation of the trigeminal nerve.

 

[Dizzyhead888]

Who's in Dublin and wants to meet?

I am staying there for the next 2 weeks.

 

[AliceW]

@BigNick

Is it still improving day after day for you, you don't have myoclonus anymore? And how is your tinnitus now after 6 weeks of treatment?

 

[ruud1boy]

I am travelling to the Hermitage Clinic on 11th October and am looking at the Airport Hopper.

Has anyone used this bus service? If I travel to the N4 footbridge, is it a long walk from there?

I am sure someone posted before but I cannot find the post. I would be grateful for any advice as I intend to book tickets in advance.

Yep, I've used the Hopper on my 2 visits to Neuromod so far. It's a 10 minute walk from the footbridge. Or you could go one stop further, to the Liffey Valley, Clayton Hotel and it's a 10 minute walk from there as well. The bus basically goes past the entrance to the medical centre and the stops are either side of it.

Doesn't really make any difference when you're going to the clinic, but when you're heading back to the airport, the Hotel is a better bet. You can wait for the bus in the hotel lobby / car park, rather than by the side of the motorway for the footbridge stop. It gets a bit loud...

 

[BigNick]

@BigNick

Is it still improving day after day for you, you don't have myoclonus anymore? And how is your tinnitus now after 6 weeks of treatment?

The ear spasms would sometimes last all day, I'm getting 3/4 days without any, then they come back a little bit.

My tinnitus is slowly but surely improving. The biggest thing is that I've stopped using sound therapy at night. It still fluctuates and can still be pretty unpleasant but there's been times when it's dropped to a soft hiss. It's been emotionally quite tough despite the improvements as you can't help but analyse it and it can spike after a session but for me they subside quite quickly.

Today has probably been my best day so far. I will be six weeks on Tuesday when I go back to Dublin.

It's hard to explain but I'm just starting to feel better.

 

[AliceW]

So happy for you @BigNick.

Thank you for this message of hope! Keep us updated! Fingers crossed!

 

[Redknight]

Who's in Dublin and wants to meet?

I am staying there for the next 2 weeks.

@Cojackb and I are both at Neuromod next Friday.

 

[Lilah]

@BigNick how did your tinnitus sound like, and do you know what caused your tinnitus?

 

[Mathew Gould]

@Cojackb and I are both at Neuromod next Friday.

And people have seen the most improvement after 6 weeks, correct? After Neuromod fine tuned the device at the follow-up appointment?

 

[ChrisBoyMonkey]

And people have seen the most improvement after 6 weeks, correct? After Neuromod fine tuned the device at the follow-up appointment?

After 6 weeks from the first 6 weeks, so 12 weeks after starting the treatment.

They just arbitrarily chose those time frames for the trial, but they believe it'll work better the longer it is used (after 12 weeks).

 

[Annpann]

Yep, I've used the Hopper on my 2 visits to Neuromod so far. It's a 10 minute walk from the footbridge. Or you could go one stop further, to the Liffey Valley, Clayton Hotel and it's a 10 minute walk from there as well. The bus basically goes past the entrance to the medical centre and the stops are either side of it.

Doesn't really make any difference when you're going to the clinic, but when you're heading back to the airport, the Hotel is a better bet. You can wait for the bus in the hotel lobby / car park, rather than by the side of the motorway for the footbridge stop. It gets a bit loud...

Thank you so much for your help.

 

[BigNick]

@BigNick how did your tinnitus sound like, and do you know what caused your tinnitus?

Probably headphones usage for over 20 years. I'm 45 years old. I was ill when it started though.

I have a few sounds but most noticeable is a hiss from the left ear and siren type high pitch from the right but there's head noise as well, it all mashes up together.

She (the audiologist) didn't seem very interested in a description of my tinnitus tbh. Guess it's all about your hearing profile. I have very mild hearing loss on their audiogram but within normal range on my one from my local hospital.

 

[Daniel Lion]

The ear spasms would sometimes last all day, I'm getting 3/4 days without any, then they come back a little bit.

My tinnitus is slowly but surely improving. The biggest thing is that I've stopped using sound therapy at night. It still fluctuates and can still be pretty unpleasant but there's been times when it's dropped to a soft hiss. It's been emotionally quite tough despite the improvements as you can't help but analyse it and it can spike after a session but for me they subside quite quickly.

Today has probably been my best day so far. I will be six weeks on Tuesday when I go back to Dublin.

It's hard to explain but I'm just starting to feel better.

Congratulations mate.

In November you will be a 1-year veteran of tinnitus. Lenire is really proving to be remarkable.

Well done BigNick. I hope you keep improving, I am sure you will.

 

[Allan1967]

I have stopped using Lenire. I suffered a very brief exposure to a house alarm panel. I continued to use my Lenire after that but things have drastically wrong for me in the past two weeks. My tinnitus is horrific.

I am told the noise exposure could have aggravated my tinnitus and then with Lenire on top it has potentially further aggravated my tinnitus. I'm told that my Lenire was set to my hearing parameters and it could have been anything that could have done it, not just Lenire... loud Telly; headphones... what I'm saying is it didn't have to be the Lenire.

I am crushed because my tinnitus is now so bad it's waking me in the night and is so horrific at that point I don't know if I can survive this. I have been advised to stop using it.

I honestly don't know if this will settle. If it's my new baseline, I am doomed, literally.

 

[Dizzyhead888]

I have stopped using Lenire. I suffered a very brief exposure to a house alarm panel. I continued to use my Lenire after that but things have drastically wrong for me in the past two weeks. My tinnitus is horrific.

I am told the noise exposure could have aggravated my tinnitus and then with Lenire on top it has potentially further aggravated my tinnitus. I'm told that my Lenire was set to my hearing parameters and it could have been anything that could have done it, not just Lenire... loud Telly; headphones... what I'm saying is it didn't have to be the Lenire.

I am crushed because my tinnitus is now so bad it's waking me in the night and is so horrific at that point I don't know if I can survive this. I have been advised to stop using it.

I honestly don't know if this will settle. If it's my new baseline, I am doomed, literally.

I hope your tinnitus will settle back and then you can retry Lenire.

 

[Lynny]

I have stopped using Lenire. I suffered a very brief exposure to a house alarm panel. I continued to use my Lenire after that but things have drastically wrong for me in the past two weeks. My tinnitus is horrific.

I am told the noise exposure could have aggravated my tinnitus and then with Lenire on top it has potentially further aggravated my tinnitus. I'm told that my Lenire was set to my hearing parameters and it could have been anything that could have done it, not just Lenire... loud Telly; headphones... what I'm saying is it didn't have to be the Lenire.

I am crushed because my tinnitus is now so bad it's waking me in the night and is so horrific at that point I don't know if I can survive this. I have been advised to stop using it.

I honestly don't know if this will settle. If it's my new baseline, I am doomed, literally.

I'm so sorry to hear that, Allan. We were all (and still are) really rooting for you and for things to go well for you. When the stress and anxiety using Lenire and worrying whether it's making things worse settles, perhaps so will your tinnitus. I can imagine this must've been an incredibly tough time for you so don't rule out stress as a possible exacerbator. I pray you will find some form of peace (and quiet). Stay strong <3

 

[GlennS]

I have stopped using Lenire. I suffered a very brief exposure to a house alarm panel.

Really sad to hear this. I don't really understand why it is, regardless of what your starting tinnitus level is, that Lenire had the opposite effect on you.

 

[Chriscom]

I have stopped using Lenire. I suffered a very brief exposure to a house alarm panel. I continued to use my Lenire after that but things have drastically wrong for me in the past two weeks. My tinnitus is horrific.....

I'm so very sorry to hear this. I know you've been through hell and back and hell again, but I sure hope you find a way to hang on and give your system more chances to settle down. Easy to say I know.

 

[Allan1967]

I'm so sorry to hear that, Allan. We were all (and still are) really rooting for you and for things to go well for you. When the stress and anxiety using Lenire and worrying whether it's making things worse settles, perhaps so will your tinnitus. I can imagine this must've been an incredibly tough time for you so don't rule out stress as a possible exacerbator. I pray you will find some form of peace (and quiet). Stay strong <3

I haven't used Lenire since September 2nd. I'm not saying Lenire caused it, but I do think it has not helped either.

Does a brief (seconds) alarm exposure cause a spike? Apparently so. But then using something with a heavy white noise effect seems to have made it worse.

To be fair to myself however I did speak to Neuromod within 1 week of using due to the rise in my tinnitus, which I was told nearly every other trial participant experienced.

My tinnitus reactivity was also increasing.

What I think is happening now is my tinnitus has got worse, simultaneously so has my reactivity (or hyperacusis) and I have noticed not only does it react at the time, it raises my tinnitus which continues to rise through the day. Is that 'winding up' or 'kindling'?

Consequently by night time my tinnitus is screaming and continues to scream in my sleep and now it's waking me up after an hour or two.

Last night it was savage.

I was used to getting some decent sleep, tinnitus calming down a bit by morning, some mornings being virtually silent. And now I wake up and it's full on from the moment I open my eyes.

I hope for an early death. I'm 52. My mother is 85, father 80. Their parents died at 67 and 72. My mum's brother at 53. Fuck living till I'm 80 with this and other shit no doubt.

I pray for a massive cardiac arrest.

 

[Allan1967]

I hope your tinnitus will settle back and then you can retry Lenire.

So do I, but I'll be dammed if I listen to the music tracks.

 

[Daniel Lion]

I have stopped using Lenire. I suffered a very brief exposure to a house alarm panel. I continued to use my Lenire after that but things have drastically wrong for me in the past two weeks. My tinnitus is horrific.

I am told the noise exposure could have aggravated my tinnitus and then with Lenire on top it has potentially further aggravated my tinnitus. I'm told that my Lenire was set to my hearing parameters and it could have been anything that could have done it, not just Lenire... loud Telly; headphones... what I'm saying is it didn't have to be the Lenire.

I am crushed because my tinnitus is now so bad it's waking me in the night and is so horrific at that point I don't know if I can survive this. I have been advised to stop using it.

I honestly don't know if this will settle. If it's my new baseline, I am doomed, literally.

Allan, you're not doomed... I was actually being sarcastic in my last post, shame on me.

1 patient's tinnitus gets better in less than a year, with or without Lenire... well for fuck's sake that's the norm outside of chronic sufferers like ourselves.

You could give people Twix bars and their tinnitus would go as for 90 percent of new sufferers that's what happens.

You and I are not doomed, we're just gonna be in purgatory longer. We will beat this. 2020s is our time mate. Hold on brother. We are in this together. Be mindful of the psyche meds, they throw extra variables into the mix. I know TheDanishGirl, you, me, a few chaps looking at cochlear implants, are really hurting... but we are gonna pull through... believe me Allan...

Give Lenire a rest, it's fine...

Sincerely Daniel

 

[ChrisBoyMonkey]

What else is on the way, realistically? Something that doesn't involve pumping sound in your ears.

If Dr. Shore's device would still be bad for you (I kinda doubt it as there have been no reported worsenings so far), there are the drugs being made such as Dr. Tzounopoulos' small molecule treatment that will be entering preclinical trials soon.

 

[skenan]

I wish I could sign up for a clinical trial. I've had my rash of terrible rip off experiences with unnecessary surgeries and tests where I was told I was losing my hearing by ENT quacks.

 

[Redknight]

I have tinnitus reacting to anything similar to white noise. It's out of this world.

This last month it was so bad that I was unable to use gas cooker (low hissing) so I had to use portable electric cooker.

If there's a shower going, or food sizzling, frying... I can't be around that either.

I wouldn't dare listening to white noise directly for even few seconds let alone an hour a day.

Reactive tinnitus is not something that responds to masking, it actually gets worse.
Totally crazy if you ask me but it's real.

I suspected Allan having this same problem.

There are a number of audio tracks to choose from, some without white noise.