Lenire — Bimodal Stimulation Treatment by Neuromod

[ThomasC]

It seems 20% have benefited from Lenire and 80% have worsened?

Why do you spread false information on this topic?

 

[MRItechssuck]

@pinklights98 thank you for keeping everyone informed. Has Lenire commented on your experiences and offered any suggestions?

 

[pinklights98]

@pinklights98 thank you for keeping everyone informed. Has Lenire commented on your experiences and offered any suggestions?

Neuromod told me that fluctuations are normal and I doubted this at first as my tinnitus got extremely aggravated but I am still early in (just finished my third week) and I'm trying to remain optimistic. It's hard, not going to lie, but I'm trying my best!

Their only other recommendation was to cut down my use of the device but this didn't help with the spike so I'm all in for now.

 

[GlennS]

It seems 20% have benefited from Lenire and 80% have worsened?

Even I think that assessment is too negative.

 

[MRItechssuck]

Neuromod told me that fluctuations are normal and I doubted this at first as my tinnitus got extremely aggravated but I am still early in (just finished my third week) and I'm trying to remain optimistic. It's hard, not going to lie, but I'm trying my best!

Their only other recommendation was to cut down my use of the device but this didn't help with the spike so I'm all in for now.

I would've hoped they would suggest a change in the stimulation timings or something.

 

[Bartoli]

It would have been best if Neuromod used MML but they used THI, which is just a bad metric.

Pretty sure they use both, don't they?

 

[Autumnly]

It would have been best if Neuromod used MML but they used THI, which is just a bad metric.

Ross O'Neill: We also measured MML, which is a kind of audiometric measure of assessing tinnitus loudness.
- source

 

[pinklights98]

I would've hoped they would suggest a change in the stimulation timings or something.

I'm scheduled for my six week appointment in two weeks.

 

[threefirefour]

Pretty sure they use both, don't they?

Ross O'Neill: We also measured MML, which is a kind of audiometric measure of assessing tinnitus loudness.
- source

Yeah I know they use both, but they mostly grade using THI.

 

[MRItechssuck]

My opinion is Lenire is a maintenance regime... it is not permanent.

 

[threefirefour]

My opinion is Lenire is a maintenance regime... it is not permanent.

There were two here who had permanent reductions, but it's possible that they could be very long regiments, assuming it is a permanent reduction.

I'm very grateful for Josh1994's reports. The first is a really good standard candle for exactly how many dB a "mild reduction" is, and how long the effects last if someone stops using Lenire. This info is very useful.

 

[JayBowson]

My opinion is Lenire is a maintenance regime... it is not permanent.

I had my first appointment today and this question was addressed. The answer is it's a very mixed bag. Some people will see results very quickly and still maintain them beyond the year long follow up. Some will relapse and need to use Lenire again. And some find that only a regular treatment routine keeps the tinnitus at bay.

I myself probably wouldn't really find the constant maintenance scenario worth it. I'm not sure an hour a day perpetually is worth keeping my milder tinnitus at bay. But then who knows how I'll respond if at all. The staff(who were lovely) were very adamant that we not think about Lenire in terms of 12 week trial timelines as it was just for need of a cutoff point. Think of it as a treatment/service that will be available to you from now on. It may turn out that you won't need it beyond a certain point or ever again.

I was recommended for treatment and have my device pickup on the 6th. So I guess I'll see myself soon.

 

[Sironketchup]

I myself probably wouldn't really find the constant maintenance scenario worth it. I'm not sure an hour a day perpetually is worth keeping my milder tinnitus at bay.

Hehe, imagine it giving you silence if you used it 30 minutes per day.
Sweet, sweet silence. Ohh I'm in memories again.
Get out of my head melancholia.
The excitement grows...



@JayBowson
I might see you on the 6th, my appointment is at 10:45.
I'm still hoping to get the fitting during the same day or on Friday. Do you know if that might be possible, or was one week the earliest it could be done?

Thanks!

 

[ChrisBoyMonkey]

I'm scheduled for my six week appointment in two weeks.

Did Neuromod push it back a little since you stopped using Lenire for a little?

 

[El BUZZ]

I'm still hoping to get the fitting during the same day or on Friday. Do you know if that might be possible, or was one week the earliest it could be done?

Thanks!

From my understanding some people have received the device the same day of the first appointment.

 

[JohnK]

Well that would have been handy. As it is, I've flown back to Dublin to pick it up. My carbon footprint is amazing!

 

[JayBowson]

Hehe, imagine it giving you silence if you used it 30 minutes per day.
Sweet, sweet silence. Ohh I'm in memories again.
Get out of my head melancholia.
The excitement grows...

@JayBowson
I might see you on the 6th, my appointment is at 10:45.
I'm still hoping to get the fitting during the same day or on Friday. Do you know if that might be possible, or was one week the earliest it could be done?

Thanks!

I'm on the 6th at 10:45 also. Maybe they have more than 1 fitter? They did stress that they're open 5 days a week now.

So they are able to offer much faster appointments. I'm not sure about same day. You could always call them and ask in advance guess?

Since @Josh1994's user review I don't mean maintaining full silence! Just whatever improvements have been gained. I'd still urge people to be realistic. You're far more likely to land in the moderate improvement/no improvement category than the complete silence group.

One thing I do plan on asking though that confuses me. If the first trial results say 66% improvers and also stipulate that those improvements in the main ARM were kept until the 12 month checkup. That would imply that those who must do regular treatment to maintain results aren't in that 66%? Was the response rate higher? Or are they in some way included in the 66%?

I'll definitely be asking that one.

 

[GlennS]

Well that would have been handy. As it is, I've flown back to Dublin to pick it up. My carbon footprint is amazing!

Yeah, that was a factor in my backing out of my appointment.

 

[winstona]

From my understanding some people have received the device the same day of the first appointment.

Really? That's great news. Did you hear about this from Neuromod themselves?

 

[raymilf]

I hope the German clinic will be handling the appointments better. Would be great if I could pick up the device directly after the first assessment. It's an 8 hour drive one way for me...

 

[Laure Chauvin]

I'm on the 6th at 10:45 also. Maybe they have more than 1 fitter? They did stress that they're open 5 days a week now.

So they are able to offer much faster appointments. I'm not sure about same day. You could always call them and ask in advance guess?

Since @Josh1994's user review I don't mean maintaining full silence! Just whatever improvements have been gained. I'd still urge people to be realistic. You're far more likely to land in the moderate improvement/no improvement category than the complete silence group.

One thing I do plan on asking though that confuses me. If the first trial results say 66% improvers and also stipulate that those improvements in the main ARM were kept until the 12 month checkup. That would imply that those who must do regular treatment to maintain results aren't in that 66%? Was the response rate higher? Or are they in some way included in the 66%?

I'll definitely be asking that one.

You're right,
I have my appointment next Tuesday and I'll ask the same question.

I have decided to wait before using Lenire, too many people have had their tinnitus increased without the certainty it is temporary or did not have any improvement. I prefer to wait for more reviews.

Doing Lenire being afraid of a worsening situation is probably counterproductive.

 

[mrbrightside614]

Could someone please link me to the research papers they've published on Lenire? I'm citing sources of available treatments for tinnitus on a veterans brochure I am working on and I have a lot of work in front of me, and would rather not wade through the 221 pages of this thread.

Thanks in advance.

 

[Kam75]

You're right,
I have my appointment next Tuesday and I'll ask the same question.

I have decided to wait before using Lenire, too many people have had their tinnitus increased without the certainty it is temporary or did not have any improvement. I prefer to wait for more reviews.

Doing Lenire being afraid of a worsening situation is probably counterproductive.

Same for me. I have my appointment in May, but I won't go for the same reason.

My tinnitus is already ruining my life because of the lack of sleep, I can't imagine the various sounds in my head increasing.

I hope that Susan Shore's device will be safer and will work for non-somatic tinnitus.

By the way, are you French?

 

[PeterPan]

Lenire User Experience Group Report 1

We now have 43 people (the cohort) who have joined the Lenire User Experience Group and who have started, or are close to starting, their treatment. Around the end of April, these people should have completed their treatment and we will issue Report 2 on the results of their treatment. Thanks very much to everyone who has joined the group and who has provided/is providing details of their experience.

Report 1 (summary and detailed) is now available. The purpose of Report 1 is to provide some information on the characteristics of the cohort prior to the commencement of treatment, to provide information about the questionnaire we used and to provide some information on the type of statistical methods and the terminology we will be using in Report 2.

Report 1 does not provide any information about the efficacy of the device (this will be in Report 2).

The summary report provides summary statistics on the group and is 1 page. Read this one if you have a cursory interest in the cohort characteristics and/or don't have much time.

The detailed report is quite lengthy, but mostly made up of charts. Read this one if you are interested in the questions we used, the baseline responses, the statistical methods etc. Because statistical results can be difficult to interpret if you don't have a statistics background, the statistics parts are carefully quarantined from the rest of the report.

If you have any suggestions on how the format could be improved for Report 2 (due out around end of April), please let me know!

We are continuing to capture information from the user group, and these reports may be updated from time-to-time as more information becomes available.

 

[Lucifer]

Lenire User Experience Group Report 1

We now have 43 people (the cohort) who have joined the Lenire User Experience Group and who have started, or are close to starting, their treatment. Around the end of April, these people should have completed their treatment and we will issue Report 2 on the results of their treatment. Thanks very much to everyone who has joined the group and who has provided/is providing details of their experience.

Report 1 (summary and detailed) is now available. The purpose of Report 1 is to provide some information on the characteristics of the cohort prior to the commencement of treatment, to provide information about the questionnaire we used and to provide some information on the type of statistical methods and the terminology we will be using in Report 2.

Report 1 does not provide any information about the efficacy of the device (this will be in Report 2).

The summary report provides summary statistics on the group and is 1 page. Read this one if you have a cursory interest in the cohort characteristics and/or don't have much time.

The detailed report is quite lengthy, but mostly made up of charts. Read this one if you are interested in the questions we used, the baseline responses, the statistical methods etc. Because statistical results can be difficult to interpret if you don't have a statistics background, the statistics parts are carefully quarantined from the rest of the report.

If you have any suggestions on how the format could be improved for Report 2 (due out around end of April), please let me know!

We are continuing to capture information from the user group, and these reports may be updated from time-to-time as more information becomes available.

Wow so informative as well. Thanks for doing the report. It's like I'm reading a novel lol.

 

[Laure Chauvin]

Same for me. I have my appointment in May, but I won't go for the same reason.

My tinnitus is already ruining my life because of the lack of sleep, I can't imagine the various sounds in my head increasing.

I hope that Susan Shore's device will be safer and will work for non-somatic tinnitus.

By the way, are you French?

I will go to my appointment because I want to be tested and ask some questions but I will wait before using the device.

 

[Jcb]

Lenire User Experience Group Report 1

We now have 43 people (the cohort) who have joined the Lenire User Experience Group and who have started, or are close to starting, their treatment. Around the end of April, these people should have completed their treatment and we will issue Report 2 on the results of their treatment. Thanks very much to everyone who has joined the group and who has provided/is providing details of their experience.

Report 1 (summary and detailed) is now available. The purpose of Report 1 is to provide some information on the characteristics of the cohort prior to the commencement of treatment, to provide information about the questionnaire we used and to provide some information on the type of statistical methods and the terminology we will be using in Report 2.

Report 1 does not provide any information about the efficacy of the device (this will be in Report 2).

The summary report provides summary statistics on the group and is 1 page. Read this one if you have a cursory interest in the cohort characteristics and/or don't have much time.

The detailed report is quite lengthy, but mostly made up of charts. Read this one if you are interested in the questions we used, the baseline responses, the statistical methods etc. Because statistical results can be difficult to interpret if you don't have a statistics background, the statistics parts are carefully quarantined from the rest of the report.

If you have any suggestions on how the format could be improved for Report 2 (due out around end of April), please let me know!

We are continuing to capture information from the user group, and these reports may be updated from time-to-time as more information becomes available.

Thanks for this and all your hard work Peter, definitely will have to read in parts but looks good so far

 

[Venator-Fox]

I'll stay at Gardiner Hostel.

Oooh, glad I saw this. I'm booking flights from the US for the assessment April 3rd and was wondering about hostel options. For paying for stuff there are you relying on US cards or is it a better idea to carry cash in case something goes wrong with those?

 

[alex1975]

Oooh, glad I saw this. I'm booking flights from the US for the assessment April 3rd and was wondering about hostel options. For paying for stuff there are you relying on US cards or is it a better idea to carry cash in case something goes wrong with those?

I was in Dublin last August and credit cards are fine everywhere.

You may want to call your bank to see if they can send you a card with a scanning chip so you can just tap and go, if you don't already have one. For some reason we're a bit behind in the United States as it relates to that kind of tech, since we are barely getting it. You can also pay with Apple Pay in most places as well.

Whatever you do, don't exchange money at the airport, they'll charge you like 20%!

As a back up, I would take your ATM just in case.

Enjoy your trip!

 

[uae96]

Oooh, glad I saw this. I'm booking flights from the US for the assessment April 3rd and was wondering about hostel options. For paying for stuff there are you relying on US cards or is it a better idea to carry cash in case something goes wrong with those?

I've never seen a city so cashless than Dublin. I mean even the hotel didn't agree to take cash from me! Same for Lenire.

I strongly advise you to carry a card.