brokensoul
Member
- Dec 31, 2019
- 223
- Tinnitus Since
- 02/05/2019
- Cause of Tinnitus
- unknown:medication,cannabis,stress,sleep deprivation
At the moment I remain skeptical, but I hope that'll change around in the coming months.
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
Member
Hi Laura. Well, I'm a patient person and didn't expect quick results. I've put my most recent impressions on the Lenire Users Experiences thread. No big change since then but I will always update it if I have anything definite to report. Thanks for asking though. I've actually been using Lenire now for about 20 weeks and am planning to continue as that is the advice I was given.
Take care.
Liz
- Aug 28, 2019
- 1,496
- Tinnitus Since
- -
- Cause of Tinnitus
- -
I find this to be a strange question. What do you mean by trust? Do you mean: Does Lenire work for the majority of users?
Not for me. Maybe it works for new and mild/moderate cases. But they need to improve it for severe sufferers.
I try to be optimistic. Even if it only works for some cases... it´s an advance.
Hey @Liz Windsor
Thank you for your response about the treatment.
May I ask how your tinnitus sounds?
Can you modulate it by moving your jaw or by biting etc.?
Do you have more than a slight hearing loss?
Thank you!
Thank you for your response about the treatment.
May I ask how your tinnitus sounds?
Can you modulate it by moving your jaw or by biting etc.?
Do you have more than a slight hearing loss?
Thank you!
- Jul 8, 2019
- 1,140
- Tinnitus Since
- 1991
- Cause of Tinnitus
- Loud Music / family history
Star64
Member
I have spoken with 4 audiology clinics in Melbourne that advertise help for tinnitus, unfortunately not one of these clinics had even heard of Lenire, let alone of this kind of treatment.
It's very disheartening to think people in this field are not up to date with treatments.
One clinic told me they would research it now since I had brought it to their attention.
This clinic was meant to be the most knowledgeable in that field and is recommended by the Victorian Tinnitus Association. They also had never heard of this treatment.
If medical professionals and audiologists are not up to date with treatments options what hope is there for us.
Hopefully in the future Lenire or its competitors will be available to Australians.
Laure Chauvin
Member
- Oct 30, 2019
- 30
- Tinnitus Since
- June 2019
- Cause of Tinnitus
- Temporo-mandibular joint dysfonction
Thank you Liz for answering me, I hope you will have some good results soon.
However. I am wondering what the Neuromod team is thinking about just the little improvement you had after 20 weeks of treatment. It has been a long time but it's a good thing you continue, patience is probably key to success.
I had the exact same experience with my ENT yesterday. Sad, really. Sometimes I feel like no one in that office has any idea what they're doing.
I think these guys are mostly interested in selling over-priced hearing aids (which, admittedly do seem to work for some people).
Hopefully we will see some real reasonably priced treatments coming to Australia soon.
Neuromod has mentioned some patient characteristics that coincide with successful treatment (e.g., hyperacusis) but have not mentioned somatic tinnitus.
brokensoul
Member
- Dec 31, 2019
- 223
- Tinnitus Since
- 02/05/2019
- Cause of Tinnitus
- unknown:medication,cannabis,stress,sleep deprivation
They don't have tinnitus so no sense of urgency or real understanding of the suffering. For most of them it's just a job, they don't live on the edge of despair like many of us do.
Plus, why would they follow up on potential treatments? Tinnitus is mostly a psychological problem that is treatable today with TRT or CBT.
* eeeeeeeeeeeee cries eeeeeeeeeeeeeee *
My tinnitus clinic is perfectly aware though about Lenire and is likely going to offer it somewhere in 2020. Then again it's run by someone who has dedicated his life to researching tinnitus.
MRItechssuck
Member
And another user just responded no change after 3 months. My hopeless / hope meter is teetering towards hopeless again.
I think I'm going to delay my trip to Ireland. There just doesn't seem to be enough evidence to take the risk.
It would be important that Neuromod publishes new data from real patients.
And also about experiences and learning if they could further improve the device (timing, frequency etc).
I am sure the device is more or less still in experimental phase and there is much room for optimizing it.
I'm noticing that lately there seem to be a tad more non-responders. I wonder if they changed something in their device that isn't working as well? Perhaps the newer tongue tip? It might be a bit paranoid on my part but just thinking out loud.
Am I right that there is, until now, only one person @Redknight who had some good improvement?
Puuuh, that's not much... How big is the likelihood that a person will get some benefit, for example a 20% reduction in their tinnitus?
Puuuh, that's not much... How big is the likelihood that a person will get some benefit, for example a 20% reduction in their tinnitus?
- Aug 28, 2019
- 1,496
- Tinnitus Since
- -
- Cause of Tinnitus
- -
70% sounds good, but how can that be if only one person has seen good improvement?
Laure Chauvin
Member
- Oct 30, 2019
- 30
- Tinnitus Since
- June 2019
- Cause of Tinnitus
- Temporo-mandibular joint dysfonction
@thescientist
Hello,
If you're around... Thank you for your latest review, I am so disappointed for you and for us...
You talked about placebo but how could you explain that some Lenire users have seen their tinnitus disappear completely for a period?
They maybe should have felt an improvement but not a complete absence of tinnitus for few days/weeks as was the case for some of them?
Did you tell Neuromod that Lenire has not worked for you after 3 months?
Have a nice day.
Hello,
If you're around... Thank you for your latest review, I am so disappointed for you and for us...
You talked about placebo but how could you explain that some Lenire users have seen their tinnitus disappear completely for a period?
They maybe should have felt an improvement but not a complete absence of tinnitus for few days/weeks as was the case for some of them?
Did you tell Neuromod that Lenire has not worked for you after 3 months?
Have a nice day.
This is the response I got, dated 12/6/19. I didn't want to post this back than due to Lenire coming out and deep down hoping the audiologist would be wrong!
Unfortunately Australia is still good decade behind the rest of the western world. Not much here is available or accepted as treatment despite being used in other developed countries.
They just love to brag about being the best in the world. Far from it unfortunately!
This is not only for tinnitus but other illnesses as well.
Anything that becomes treatment for tinnitus somewhere in the world will take at least 5 years to become available here.
I wouldn't hold my breath, we won't be helped in Australia.
- Jul 17, 2019
- 87
- Tinnitus Since
- 2017
- Cause of Tinnitus
- Idiopathic/Bad shoes?
I mean I don't think there's much in that response to be taken negatively. They say that the researchers are highly regarded and that the approach is likely the best current one. The only thing to do is separate the 40% either from the published stats (whenever they are).
Yes, just another great event funded from the money that should go into proper research.
Cure or treatment will never come from these people!
I agree but saying that Susan Shore's device might be better is still sort of negative for Lenire.
Laure Chauvin
Member
- Oct 30, 2019
- 30
- Tinnitus Since
- June 2019
- Cause of Tinnitus
- Temporo-mandibular joint dysfonction
In a few months we have gone from "Lenire is working" to "Lenire doesn't work"... It's an emotional rollercoaster, I really don't know what to think.
FounderWe weren't invited. We learned about the initiative at the same time as everyone else (i.e. at the time of the public announcement).
After that, Hazel did try to get us involved but wasn't successful.
Obviously we'd love to have been involved and feel that we could have represented the patient side quite well.
(This is not to shame the participating organizations, they had every right to decide who they want to invite, and I hope good things come out of the partnership, I just felt I had to tell this as is because we've been asked this by quite a few members now and transparency is key in everything we do.)