Struggling to Cope
- Thread starter NinaW
- Start date
Member
On the contrary, I feel sorry for the poor and unfortunate people that are going to be reeled in by this guff.
Michael
So let me get this straight,
If it's expensive, then it's basically scamming people
If it's cheap, it's cheap because it's not an effective product.
What option does Neuromod win in your opinion?
Drone Draper
Member
Drone Draper
Member
There's no way I'm going on any sleeping meds, I need my brain fully functioning in the day and find anything that makes me drowsy tends to make me feel like my brain isn't fully functioning in the day. As for machines it is something I'll look in to but there are so many things out there, it is hard to figure out what might be suitable. My doctor has referred me to ENT again but times I've been before they haven't suggested anything for the tinnitus. Just poke me about, do hearing checks and tell me they can't find anything wrong except a bit of a sore throat. There's often suggestions that I really shouldn't be bothering them with such minor things, but I don't get to see them when things are at their worst because it takes about 4 months to get an appointment.
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
@Michael Leigh makes some important comments and it's important to keep in mind, acoustic CR neuromodulation was a big thing a few years ago. Today I struggle to find testimonials on its effectiveness.
I will never in my life fall into a tinnitus scam again.
However, there are reasons to be positive of this treatment, but despite my enthusiasm it tends to be hyped up by newbies and slated by veterans.
Advice for newbies - wait for the evidence base to build up, be cautiously optimistic
Advice for Veterans - it may or may not work. Don't assume history will repeat itself. Like Einstein said "if you did what you always did you will get what you always got", Neuromod and the scientists on board seem a bright bunch, surely they are aiming higher than for a quick buck.
I will never in my life fall into a tinnitus scam again.
However, there are reasons to be positive of this treatment, but despite my enthusiasm it tends to be hyped up by newbies and slated by veterans.
Advice for newbies - wait for the evidence base to build up, be cautiously optimistic
Advice for Veterans - it may or may not work. Don't assume history will repeat itself. Like Einstein said "if you did what you always did you will get what you always got", Neuromod and the scientists on board seem a bright bunch, surely they are aiming higher than for a quick buck.
Drone Draper
Member
Yeah, I've heard a lot of people say that. I had no choice personally.
I'm loathe to link to the BTA, but do you perhaps think your tinnitus could be due to TMJ?
https://www.tinnitus.org.uk/tinnitus-and-tmj
I'm loathe to link to the BTA, but do you perhaps think your tinnitus could be due to TMJ?
https://www.tinnitus.org.uk/tinnitus-and-tmj
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
Have a look at the papers, the scientists, the company Michael.
US Veterans are not new to scams, but please take some time into reading research. It is worth noting
- They have performed 3 of the largest clinical trials to date for tinnitus with this method of treatment. They are also submitting for it to be peer reviewed before publishing their results to customers.
- The guys on board for Neuromod are not all commercial salesmen. If you look into them, they are reputable scientists that have a specific interest In tinnitus. Some like Richard Tyler was a founder of the TRI.
- The company dates back to 2010. They released a product in 2015 but withdrew it to spend their limited resources on demonstrating efficacy. There was an article about a new investment from the times about a €24 million investment boost.
- Their work comes from university research. Also, 2 universities in the USA are also looking at the emerging evidence how bi-modal neuromodulation can be used to treat tinnitus. Have you heard of Susan Shore from the University of Michigan?
What I'm saying @Michael Leigh is that, I understand, I've had tinnitus a long time too, and there have been a shit load of so called products that rinse your wallet, but you take some time out and have a look into it.
HI @Paulmanlike
Thank you for the information Paulmanlike. I will look at the information on Neuromod and appreciate it if you can supply me with a link.
Thank you.
Michael
- Apr 15, 2017
- 1,419
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Noise
Hi Michael
The website address is:
https://www.neuromoddevices.com
Link to the Q&A where Steve interview the CEO (Ross O'Neill):
https://www.tinnitustalk.com/threads/q-a-tinnitus-hub-meets-neuromod-lenire.32369/
Discussion from various members of Tinnitus Talk:
https://www.tinnitustalk.com/threads/mutebutton.124/
They also have a Twitter page and a mailing list that you can sign up to where they keep you updated on news:
https://twitter.com/neuromoddevices
Also, David from the BTA and Steve have a discussion about bi- modal neuromodulation here from 2018 high lights in tinnitus research
https://www.tinnitustalk.com/threads/reflections-on-tinnitus-research-2018.32743/
If you have any questions Michael I will try and answer them as I've been following this research closely.
I am cautiously optimistic and will be waiting for an evidence base to build up before spending any money on treatment. I considered the Acoustic CR Neuromodulation once at £4,500, however due to a lack of evidence I have held on for a new treatment that Neuromod may (or may not) be.
I've expressed some scepticism in the past about Neuromodulation, but the initial results from their trials do seem to be promising and they do seem to be trying something which is different from the past. However, whatever the price tag - and as far as I know they have not yet announced this - it is likely to be be high. And in terms of NICE approval and the NHS the time period for that happening will be a long way off (it ever).
My advice for anybody considering purchasing the treatment is, if you are not exceptionally desperate and very well off, it's probably worth waiting for at least six months until after the launch. By that time, if the treatment is effective - and given the level of interest in it at Tinnitus Talk - there will be plenty of success stories to read - and hopefully an online poll at Tinnitus Talk - will measure how many people found the device useful.
My advice for anybody considering purchasing the treatment is, if you are not exceptionally desperate and very well off, it's probably worth waiting for at least six months until after the launch. By that time, if the treatment is effective - and given the level of interest in it at Tinnitus Talk - there will be plenty of success stories to read - and hopefully an online poll at Tinnitus Talk - will measure how many people found the device useful.
@Paulmanlike
Thank you once again for supplying me with information and website links to Neuromod.
After reading the information on their website which is quite informative, I feel that some people will benefit from using Neuromod but doubt this treatment will be effective on its own, especially for people that have very intrusive tinnitus with or without hyperacusis.
Tinnitus can be very debilitating when it is severe and if hyperacusis is present more so. I know this from personal experience having taken 4 years to habituate for the 2nd time - this involved counselling as part of TRT and wearing white noise generators. In addition to this, I have corresponded and counselled people with this condition that have had a lot of difficulty coping with it. Therefore, I don't believe this treatment "by itself", is enough to address and treat the psychological effects that tinnitus can have on a person's mental and emotional wellbeing. Medication, and counselling are vitally important in these circumstances. As I said in my previous post, tinnitus is 90% mental, veterans and those seasoned to tinnitus know this.
I wish you well.
Michael
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It is possible, I do have TMJ problems, but I've also had long term (30+ years) with a constant sore throat and frequent ear ache on one side since I had my wisdom teeth taken out. So I think those problems could be due them not operating soon enough or messing up something during the operation. However, the tinnitus started after some work I did where I was sitting next to an air extraction system all shift. It wasn't load enough that earplugs were needed, but I think the endless white noise may have been an issue. Needless to say that is one of the reasons I don't want to listen to a white noise machine to get to sleep, it would have quite the opposite affect.
Drone Draper
Member
Right.
I think you are possibly on to something. Bose have recently brought out their SleepBuds - they are buds you wear at night that play a calming noise from their library - the usual waterfalls, brooks, campfires, etc. One person in here claims they got tinnitus from using them ONE NIGHT!
https://www.tinnitustalk.com/threads/new-bose-sleepbuds.29814/#post-388345
I also have a friend who works for them, he told me that for people with LIGHT tinnitus, they provide some relief, but people with moderate tinnitus have told them that they make things worse.
I also read one of the success stories here where someone said they had an improvement in their tinnitus when they stopped with the white noise at night. Personally, I have gone from sleeping with earplugs pre-tinnitus, to white noise after I got tinnitus to going back to earplugs. Yes, it makes the tinnitus seem louder than when I'm not wearing plugs, but I feel like it means the tinnitus is quieter in the morning.
I think you are possibly on to something. Bose have recently brought out their SleepBuds - they are buds you wear at night that play a calming noise from their library - the usual waterfalls, brooks, campfires, etc. One person in here claims they got tinnitus from using them ONE NIGHT!
https://www.tinnitustalk.com/threads/new-bose-sleepbuds.29814/#post-388345
I also have a friend who works for them, he told me that for people with LIGHT tinnitus, they provide some relief, but people with moderate tinnitus have told them that they make things worse.
I also read one of the success stories here where someone said they had an improvement in their tinnitus when they stopped with the white noise at night. Personally, I have gone from sleeping with earplugs pre-tinnitus, to white noise after I got tinnitus to going back to earplugs. Yes, it makes the tinnitus seem louder than when I'm not wearing plugs, but I feel like it means the tinnitus is quieter in the morning.
I too hope there will be many success stories to read here. I'm just not sure if polls on TT will be a reliable source of info since this is kinda true:
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