A scam as a tinnitus fix? Maybe. As a relief mechanism, no. So then it could be a very strong point...
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
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What I mean is that $2,000 per white noise generator is insane.
It's like a $90 pizza margherita.
Joe72
Member
- Dec 25, 2020
- 10
- Tinnitus Since
- 2014
- Cause of Tinnitus
- headphones use as a teenager and loud event
I agree... It's a money grab...
I think many researchers and institutions are in the "grab the money now while you still can" mode due to the unpredictable nature of where this whole COVID-19 BS is going into the future and how that will affect funding. That's my guess.
I think a lot of research and resources have dwindled away over the last year and it's "everyone for themselves" mode now until the SHTF. You can only print and inject so much fake money into economies before it catches up into a world-wide collapse... Whether you believe the collapse will be real or manufactured, it doesn't matter. I think a collapse and reset is coming given the global events of the past year.
You guys will hate me for this, but I think tinnitus is so complicated that will never be completely solved. Like many of you here I have downloaded and read so many papers related to tinnitus that it makes my head spin. There are so many components to it... sleep/wake cycle... circadian rhythm... hearing loss due to noise... hearing loss due to drug use... old age hearing loss... etc...
Many people who suffer from tinnitus claim they have no hearing loss, BUT I still believe that they DO have hearing loss although it is undetectable... Phantom signals are being generated by your own brain to make up for it, however small or insignificant... That's when lifestyle, mental health and diet come into play! How your brain re-wires to compensate for the loss of hearing! We have the ability over weeks and months to turn ON and OFF genes related to inflammation and disease in our own bodies just by adjusting our diet, happiness, and general health... That's been proven time and time again - the immune system is intricately connected to the nervous system... This is why the entire subject is so complicated... That's why some people with hearing loss experience no tinnitus - their immune systems and nervous systems and activated/deactivated genes are DIFFERENT than people that suffer... And it all comes back full circle to genetics, diet, mental health, human connections, and immunity...
There was a study recently in Japan that looked at residents in Okinawa that live to 100. They came to the positive conclusion that although the right genetics will clear the path towards living to 100, diet and lifestyle trumps the centennial gene. That means those without the centennial gene can also live to 100, although they must work harder at it by maintaining a very healthy diet and lifestyle - in other words these people, through diet and lifestyle are able to activate "supporting" genes that relate to a long life... That's good news, but my point is that is shows just how complex our bodies really are... I believe neurological diseases like tinnitus are similar in nature... There is no smoking gun solution... It's a entire lifestyle change combined with mental health and immunity and perhaps some drugs that might enhance our ability to activate and re-wire our brains... I still think resetting and rewiring is the key here...
So there is hope, and I hope each and everyday, but only because I better understand my disease now and will not rest my hopes on the medical community to solve it for me... They are ultimately governed by profits... I am not.
MemberCan you let me know what this steroid is called? Do I need to get it via my GP?
I have had tinnitus for the past 3 months due to physical damage to the nerve endings in my inner ear (confirmed by ENT)... Maybe this is worth a shot.
AfroSnowman
Member
- Jul 23, 2019
- 1,074
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
Prednisone is the oral form, from my understanding 3 months in is really too late. I think it is to stop the damage from inflammation after a few days the damage is already done. That being said I'm no doctor and I'd talk to my ENT for their opinion.
You're not wrong. Tinnitus manifests from many different things. Will all tinnitus be cured? I don't believe so. Some cases unfortunately will never be solved. With that being said I believe most if not all cases involving noise exposure and ototoxic drugs will be solved. If you get into a motorcycle accident and smash your head on the pavement and a brain injury causes it, you're probably shit out of luck. I genuinely believe that one of these eight or nine companies will get the formula correct and deliver a therapy that cures hearing loss. When that happens I truly believe most people will have elimination or exponential improvements.
I'm going to chance it and try the per appointment payment option. It's expensive given the mediocre reception on here but thankfully I'm in a position to not have it set me back too much to try.
Anyone who has fine hearing and visual snow found much in the way of improvement so far? I'm really hoping to knock back my most recent 2 month spike.
Anyone who has fine hearing and visual snow found much in the way of improvement so far? I'm really hoping to knock back my most recent 2 month spike.
Nothing to add to the above posts relative to my experience with Neuromod, travelling from Glasgow to Dublin by bus...
Staff were outstanding, lovely girls, love that sexy accent. Sadly the treatment didn't work for me despite two 12-week treatment periods.
Per the T&Cs I cannot resell but it's a shame I've got this kit that potentially will end up in a bin. Tongue tip has expired... Oh well.
Staff were outstanding, lovely girls, love that sexy accent. Sadly the treatment didn't work for me despite two 12-week treatment periods.
Per the T&Cs I cannot resell but it's a shame I've got this kit that potentially will end up in a bin. Tongue tip has expired... Oh well.
You would never know it based on the gushing puff pieces it has gotten in the media.
A real lack of due diligence on the part of journalists.
Honestly, for at least some improvement I wouldn't care too much about the money. I'd even consider it if my tinnitus would be guaranteed to stay the same, but the risk that it could significantly worsen it... I don't know. That's really scary.
The missing link in Lenire is that one must use the device and try to adjust the tinnitus through movements of the jaw or neck throughout the session. I am sure it will work like a Susan Shore device, you should try it with Lenire.
Sorry I'm not familiar - what are you basing your statement on re: the necessity of modulating the body throughout the session - is this how it works or speculative?
AfroSnowman
Member
- Jul 23, 2019
- 1,074
- Tinnitus Since
- 04/2019
- Cause of Tinnitus
- Nonnatural energy source
Looking at it from a distance now, ultimately it is unclear. If you had tested my TFI before and after the 3 month course you would have found an improvement. I believe that I experience less of my most obnoxious sounds after the treatment.
In both cases how can I truly know if that is due to Lenire or due to whatever process I went through from month 9-12 in my tinnitus journey.
What I will say is that I am glad I tried it. It is the only treatment that might have helped even a little, though not enough to get me off Tinnitus Talk. I recommend it if you have easy access, enough money, and realistic expectations. Personally I'll be giving it another go shortly. I've been taking a long hiatus while participating in a different tinnitus study, when it is over I'll be taking out my brand new tongue tip and giving it another go.
I believe it's speculation based on Susan Shore's device using the same bimodal stimulation strategy however that was tested placing electrodes where the patient in question could modulate their tinnitus.
Commonly it seems, clenching jaw is often a way for people to modulate their tinnitus.
It's certainly not a bad idea to try it with the Lenire device imo as you're activating the tinnitus portion of your brain, however this device was aimed as a general sweep by using the tongue and as such their may be no advantage to modulating as it simply doesn't target this.
It's all conjecture though as this is still best guess stuff.
Have you been tested from 8,000 Hz to 20,000 Hz? Very few people have. Almost all audiologists test only up to 8,000 Hz. If you have not been tested in those other frequencies, then you cannot yet know if you have hearing loss.
If I had a dollar for every post on Tinnitus Talk and Facebook where someone says they have no hearing loss but have not been tested over 8,000 Hz, I would be rich.
- Jul 16, 2019
- 89
- Tinnitus Since
- 10/2018
- Cause of Tinnitus
- Unknow. Maybe stress?
I have no hearing loss. I have had a high frequency audiogram. The tinnitus started at night, when I was in silence.Have you been tested from 8,000 Hz to 20,000 Hz? Very few people have. Almost all audiologists test only up to 8,000 Hz. If you have not been tested in those other frequencies, then you cannot yet know if you have hearing loss.
If I had a dollar for every post on Tinnitus Talk and Facebook where someone says they have no hearing loss but have not been tested over 8,000 Hz, I would be rich.
The Tinnitus Talk study does not have any data on the efficacy of the Lenire on tinnitus induced by stress, but we did find that it seems to work better on people with good hearing.
The Neuromod studies do not have data on stress-induced tinnitus.
ajc
Member
- Feb 6, 2018
- 1,170
- Tinnitus Since
- 11/2002; spike 2009; worse 2017-18
- Cause of Tinnitus
- Loud music - noise damage
Yes. But I didn't know what severe tinnitus was before I tried Lenire. And I got badly hurt. It is a scandal that this fake treatment is still being marketed. Given the marketing and hype Lenire has received on this forum, I expect the owners of Tinnitus Talk to hold the entrepreneurs behind Lenire accountable. Among the many tinnitus treatment scams few actually made their patients worse. Lenire can make your tinnitus worse or even give you trigeminal neuralgia. So stay away.
FounderMads, you're a long-time supporter of us and we appreciate that, but please try to understand that we haven't hyped anything from Neuromod. I've always been a healthy skeptic of their tech, starting from MuteButton, the name of which was comical by itself.
I believe we've done a service to the tinnitus community by having the User Experiences thread, organizing our own Patient Experience Group, carrying out a video interview and a Tinnitus Talk Podcast episode, and by @Hazel doing the write-up on our blog:
Here's Why the Jury's Still Out on Lenire
We also haven't taken a penny from Neuromod in sponsorship money, unlike some other organizations. Furthermore, when Steve went to do the first interview in Ireland, he even paid for that trip out of his own pocket.
The weaknesses mentioned in the above write-up are obviously deeply troubling, and if anyone asks me if Lenire is worth a try, the answer is a resounding no, as it stands now. I sincerely wish their product improves in the future, and that there will be placebo-controlled trials. My biggest wish is to have relief available for all of us, including myself.
Hi Markku. I really do appreciate the effort you are making by running this board. You are doing a great job. In regards to Neuromod and Lenire, I think Tinnitus Talk should follow up on them. That's it.
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