Q&A: Tinnitus Hub Meets Neuromod (Lenire)

[Gman]

No treatment works for 100% of people, so there's no reason why it would be any different with MuteButton. But to have the first actual real treatment (with others being developed) that offers the chance for tinnitus to improve is something that fills me with hope.

 

[PDodge]

We can speculate all we want but until we have more first hand accounts it doesn't matter what we think here haha.

 

[valeri]

@RCP1,

Sorry if this has been asked but why didn't you participate in the trial considering you are in Ireland?

 

[Machina]

Do you guys really believe this is the first real step to "curing" tinnitus? Just wondering. Feels as if not many care about this condition.

@Clare B
Have you tried listening for the tinnitus? Has it come back even for just a little bit?

 

[Sam Bridge]

I agree.

And remember that Clare B said the treatment began to take effect in the last sessions.

Maybe we should prepare to read negative testimonies during the first weeks. :S

Well yes possibly but it is supposed to be used for ten weeks so let's wait for that time period to end before judging.

 

[Soren]

Do you guys really believe this is the first real step to "curing" tinnitus? Just wondering. Feels as if not many care about this condition.

Yes. I take it you don't feel the same?

 

[Gman]

Do you guys really believe this is the first real step to "curing" tinnitus? Just wondering. Feels as if not many care about this condition.

@Clare B
Have you tried listening for the tinnitus? Has it come back even for just a little bit?

A real step to at least treating it and, for the lucky ones, maybe more. I don't think they've been developing it for laughs.

 

[RCP1]

Merry Xmas.

@RCP1,

Sorry if this has been asked but why didn't you participate in the trial considering you are in Ireland?

I didn't hear about it in time.

 

[Don Tinny]

I told my relatives about this device and they have a hard time believing that it is so close to reaching the market.
My partner does not stop telling me "those are experimental things". "It's something that has yet to be proven." Sometimes I think he does not want to see me "free" again. How can you take away hope like that?

 

[dayma]

I just renewed my passport and global entry simply for this. Now I am just waiting for its release and an audiologist that sells it and I will book my travel.

I may ask some of our Irish friends on here for suggestions ...

 

[drivera2592]

I told my relatives about this device and they have a hard time believing that it is so close to reaching the market.
My partner does not stop telling me "those are experimental things". "It's something that has yet to be proven." Sometimes I think he does not want to see me "free" again. How can you take away hope like that?

How soon are they expecting it to be released?

I've already looked into flights and they cost about $600 round trip from Los Angeles.

 

[Bam]

I told my relatives about this device and they have a hard time believing that it is so close to reaching the market.
My partner does not stop telling me "those are experimental things". "It's something that has yet to be proven." Sometimes I think he does not want to see me "free" again. How can you take away hope like that?

Realistically I reckon it's going to be between 4 and 6 months before anyone actually gets hold of one.

 

[Machina]

Yes. I take it you don't feel the same?

I feel as if it can only be a real step forward if it has a success rate (of lowering tinnitus or even erasing it to silence or just about) of at least 60%.

If this happens then we will have almost a blueprint of what's to come next in terms of treating tinnitus.

 

[Don Tinny]

How soon are they expecting it to be released?

I've already looked into flights and they cost about $600 round trip from Los Angeles.

It was supposed to be for sale in early 2019. Some people said January.

For me (Argentina) a trip to Ireland costs nearly $1700USD.

 

[OnceUponaTime]

It did improve my tinnitus by the end of the trial and interestingly my tinnitus continued to quieten after I stopped using the device.

Congratulations!! This is great news for all of us here. Thank you for sharing your experience and results.

I pray it will help the majority of people.

 

[Bndsmheowqhe]

Realistically I reckon it's going to be between 4 and 6 months before anyone actually gets hold of one.

I picture a bunch of impatient tinnitus sufferers storming their headquarters demanding access to the device only to be driven away by a moderately loud stereo system.

 

[Bam]

I picture a bunch of impatient tinnitus sufferers storming their headquarters demanding access to the device only to be driven away by a moderately loud stereo system.

Or a woman on reception clipping her nails and eating her way through a bowl of eggs.

@Bill Bauer @Eric N

 

[Sam Bridge]

I picture a bunch of impatient tinnitus sufferers storming their headquarters demanding access to the device only to be driven away by a moderately loud stereo system.

Moderately loud?? Pssshh that wouldn't be enough to stop me storming the office!

 

[Clare B]

@Clare B Did they allow you to take the Neuromod device home, or did you use it at their office? Will the patients be able to buy this device and use it at home, or will the treatment take place elsewhere?

Oh yes, they allowed us to take it home for the 12 weeks, so we could use it in the comfort of our own home. I lived 200 miles away from their office anyway!

We had to use it twice a day for 30 mins, I used it in the morning and evening. We had to bring the device with us when we went back for check up appointments I think so they could check the data, to make sure we were complying with the recommended usage etc.

If you buy a device I'd imagine it would be the same as what happened us on the trial, you would have it set up by an audiologist to be calibrated to suit your hearing, tinnitus level and tongue tip sensitivity tolerance.

They allowed us to test the device for one of the treatments (30 mins) in their office, to observe us and make sure we were happy using the device and if we had any questions. It was very easy to use though.

 

[Clare B]

Hi Clare, I hope you don't mind me asking but did the onset of your tinnitus coincide with pregnancy or delivery? If so, I think there are some young moms that could benefit from your experience. TC

That's no problem. No it didn't coincide with pregnancy or delivery, my daughter was born in 2007 and my tinnitus came on a long time after that in 2015.

 

[Clare B]

You, my friend, are a smart one. If I have the opportunity to try this product and it is efficacious - imma treat it like fcking gold.

Ha! Yes, I wasn't about to miss an opportunity to get rid of the thing that was driving me nuts! I thought I would have been a fool not to!

 

[Clare B]

I really hope everything you are stating is true and that there is some real help on the way.

I'm not about to come on here and mess with people who are dealing with such a serious problem. I really just want to help by answering any questions I can about my personal experience with tinnitus and using the device.

 

[Clare B]

Do you guys really believe this is the first real step to "curing" tinnitus? Just wondering. Feels as if not many care about this condition.

@Clare B
Have you tried listening for the tinnitus? Has it come back even for just a little bit?

I have tried listening for it. No it hasn't come back not for even just a little bit. I usually have a listen before I go to sleep at night, not every night just every now and then, I really don't want to hear it again thanks!

Now that my tinnitus has gone there are not many noises that annoy me like they might annoy others, dripping tap no problem, ticking clock no problem, dog barking no problem, nothing compares to tinnitus that you cannot escape from!

 

[EDDTEKK]

Hi Clare B,

Did you notice the improvement gradually and when did it start? Thanks so much that you are here to share your first hand experience.

 

[Clare B]

I told my relatives about this device and they have a hard time believing that it is so close to reaching the market.
My partner does not stop telling me "those are experimental things". "It's something that has yet to be proven." Sometimes I think he does not want to see me "free" again. How can you take away hope like that?

Maybe they just don't want you to get your hopes up and be disappointed if it didn't work. I kept my expectations very low after my experience with doctors and ENT consultants. But hey, look it worked for me!

Now I realise how lucky I was to get on the trial. I would say definitely have hope that there is a possibility it could work for you. Better to have hope that not to. That's a dark place to be. It is hard for family members and friends who haven't experienced tinnitus to really understand the mental anguish it can cause.

 

[Don Tinny]

Maybe they just don't want you to get your hopes up and be disappointed if it didn't work. I kept my expectations very low after my experience with doctors and ENT consultants. But hey, look it worked for me!

Now I realise how lucky I was to get on the trial. I would say definitely have hope that there is a possibility it could work for you. Better to have hope that not to. That's a dark place to be. It is hard for family members and friends who haven't experienced tinnitus to really understand the mental anguish it can cause.

Yes. I agree. I wish it worked for everyone. But I know that is almost impossible.

 

[Halsy]

Thanks to everyone for their hard work in putting this together so well. They're definitely coming at in the right way IMO so I'm sold. Anything involving neuroplasticity for tinnitus is necessary IMO. And his talking about how this helps in the decay of the neural pathways established by the tinnitus, that's the essence of it all right there. I'm curious if the electrical stimulation does anything to help reset the fusiform cells - as is the case with what Susan Shore and Co. are doing.

I'll have to email these folks and ask if my SSCD may be a factor for exclusion or if they've tested anyone who has it. I see people talking about cost, my wager is it'll come in about $1000 US or less. Looks like it shouldn't be more than $500 IMO.

Thanks again folks.

 

[Bam]

nothing compares to tinnitus that you cannot escape from

@Clare B To me - somebody who has intricately planned their own death due to this condition- you are as remarkable and noteworthy as somebody who has survived a plane crash in the mountains that has wiped out every single person on board, and has somehow crawled from the wreckage unscathed and survived for several weeks on melted snow and the flesh of the other passengers dead bodies whilst fighting off grizzly bears with nothing more than a complimentary toothbrush.......No shit! That's how miraculous I find your escape from this nightmare.

 

[Manny]

Realistically I reckon it's going to be between 4 and 6 months before anyone actually gets hold of one.

Ugh. Why do I have this dreadful sinking feeling that you are right. PLEASE lord let this be wrong and let the device be available January!!

 

[annV]

Ugh. Why do I have this dreadful sinking feeling that you are right. PLEASE lord let this be wrong and let the device be available January!!

If it was available by January, surely there should be some kind of announcement by now.