Struggling to Cope

[NinaW]

I've been living with tinnitus for a few years now. I did have a year or two with frequent glugging sounds, pressure changes etc. in one ear due to a eustacian tube problem but that was cured with a nasal spray.

My current issue is a high pitched whistle. I usually only notice it when there's no other noise around but it can make it difficult to get to sleep. Recently, it has been worse, I can hear it all the time and it has woken me in the night a few times and had kept me awake when I'm trying to get to sleep more.

I've looked online for advice on how to cope and the main medical advice seems to be "you'll get used to it" and "you have to learn to not worry about it" and "worrying about it is what makes is worse". None of these apply to me, so I'm looking for some more helpful suggestions.

 

[Paulmanlike]

Looks like a new device will be coming out this year, www.neuromoddevices.com

It's based on science of 'bi-modal neuromodulation' and has the tinnitus community very excited right now.

So possibly, there is hope on the horizon that we can have a bit more control over it one day X

 

[Michael Leigh]

Looks like a new device will be coming out this year, www.neuromoddevices.com

No doubt with an extremely high price tag to match!

Michael

 

[Drone Draper]

I'm hoping Neuromod is a huge success and they can offer the product at a cheaper rate and, eventually, through the public healthcare systems. But yeah, the price will be prohibitive to many sufferers initially.

 

[Paulmanlike]

I'm hoping Neuromod is a huge success and they can offer the product at a cheaper rate and, eventually, through the public healthcare systems. But yeah, the price will be prohibitive to many sufferers initially.

For it to be adopted by the NHS I believe that it has to be reviewed by NICE - National Institute for Health and Care Excellence.

It needs to be better than the current treatments on offer and has to have a strong evidence base and be cost effective.

 

[Drone Draper]

Hopefully when I get mine I can invite all of you with similar audiograms to come round to mine to share, like we used to share SNES games when I was a kid.

 

[ZachB]

Hopefully when I get mine I can invite all of you with similar audiograms to come round to mine to share, like we used to share SNES games when I was a kid.

How much is it gonna cost and when exactly will it be retailed in Ireland? Can't find that info on their website

 

[Drone Draper]

Hey Zach. The're being very cagey with both. I wasn't a T sufferer when they first released their old model, so someone else will need to provide the details of their price. They say they're launching "early 2019", I can see this being pushed back towards the end of the year.

 

[Drone Draper]

For it to be adopted by the NHS I believe that it has to be reviewed by NICE - National Institute for Health and Care Excellence.

It needs to be better than the current treatments on offer and has to have a strong evidence base and be cost effective.

I think that is an outcome we all hope for. Fingers crossed.

 

[Michael Leigh]

How much is it gonna cost and when exactly will it be retailed in Ireland? Can't find that info on their website

My guess is that it will be from £4,000/€4,556/$5,000 upwards. It needs to be expensive for people to believe in it. I think Neuromod to be very similar to Neuromodulation, which the Tinnitus Clinic has been using to treat people for some years. It may have a few tweaks to the design but essentially I bet it's the same thing.

Michael

 

[Drone Draper]

I agree, I believe the Acoustic Neuromodulation thing costs about that.

The audiologist I spoke to at the Tinnitus Clinic said it is effective, but required a lot of time (I think it was something like 18 months) to work. He also said it requires a high amount of compliance for it to make a difference.

 

[Paulmanlike]

My guess is that it will be from £4,000/€4,556/$5,000 upwards. It needs to be expensive for people to believe in it. I think Neuromod to be very similar to Neuromodulation, which the Tinnitus Clinic has been using to treat people for some years. It may have a few tweaks to the design but essentially I bet it's the same thing.

Michael

The difference is the "bi-modal" part, which is believed to drive neuroplasticity to make lasting brain changes.

This can be done in a shorter period of time than ACRN and is promising higher rate chances of working.

I have however given my view that I will be holding onto my money before an evidence base builds up: with or without peer review because of the history of treatments like ACRN that are somewhat dubious.

 

[Agrajag364]

For it to be adopted by the NHS I believe that it has to be reviewed by NICE - National Institute for Health and Care Excellence.

It needs to be better than the current treatments on offer and has to have a strong evidence base and be cost effective.

I think the Neuromod product would have to have very good evidence behind it for NICE to approve it, considering how expensive it is.

 

[ZachB]

I agree, I believe the Acoustic Neuromodulation thing costs about that.

The audiologist I spoke to at the Tinnitus Clinic said it is effective, but required a lot of time (I think it was something like 18 months) to work. He also said it requires a high amount of compliance for it to make a difference.

There's Neuromodulation offered where I live. Has it been proven to work?! Is that pretty much that same thing as NeuroMod? Like how big of a difference does it make.

 

[Paulmanlike]

I think the Neuromod product would have to have very good evidence behind it for NICE to approve it, considering how expensive it is.

Yep. Would definitely be released privately first for a hefty fee, depending if it is shown to have a 80% success rate or better after tweaking it, before the NHS touch it.

 

[Paulmanlike]

There's Neuromodulation offered where I live. Has it been proven to work?! Is that pretty much that same thing as NeuroMod? Like how big of a difference does it make.

Please, neuromodulation is different to the Neuromod which is BI-MODAL neuromodulation, basically meaning they stimulate to sensory inputs. With Neuromod it's through headphones and the trigeminal nerve.

 

[Drone Draper]

Zach - this is where it gets interesting. You will need to google the specific brand of machine the place near you uses.

My understanding is - and people who have been around this game longer, please tell me if I'm mistaken - the system the tinnitus clinic near me uses is not that effective for everyone. ALLEGEDLY, patients who signed up to it needed to sign a huge disclaimer that they wouldn't talk about the system on social media and the level of success was all over the place.

They did do a study that was published, but apparently it's quite sketchy. I haven't read it yet.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6192374/

I would say don't waste your money just yet.

 

[JohnAdams]

a high pitched whistle.

I'm starting to think the high pitch whistle is not directly related to the specific damaged frequencies in the cochlea and is from something else. Any thoughts?

 

[Agrajag364]

I'm starting to think the high pitch whistle is not directly related to the specific damaged frequencies in the cochlea and is from something else. Any thoughts?

Could be because most people describe their tinnitus as high pitched yet often hearing loss is in the lower speaking frequencies.

 

[JohnAdams]

Could be because most people describe their tinnitus as high pitched yet often hearing loss is in the lower speaking frequencies.

I have a notch at 6.5khz and a tone that matches that, which is a hight pitch, and the high pitch whistle sound is on top of that and fluctuates and is the problem tone by far.

 

[Agrajag364]

I have a notch at 6.5khz and a tone that matches that, which is a hight pitch, and the high pitch whistle sound is on top of that and fluctuates and is the problem tone by far.

Mine is about 10kHz but the only hearing loss I have is above 14kHz in the tinnitus ear. I know it's not just ageing because I can hear well above 14kHz in the non-tinnitus ear.

 

[grate_biff]

No doubt with an extremely high price tag to match!

Better than TRT scams though.

 

[Ken219]

No doubt with an extremely high price tag to match!

Michael

Why worry about 'price'? Efficacy!

 

[grate_biff]

high pitch whistle is not directly related to the specific damaged frequencies in the cochlea

I have a high pitch whistle, 10-13 kHz, and it correlates exact to where my loss is.
See my avatar. To me, it's self explanatory.

 

[JohnAdams]

I have a high pitch whistle, 10-13 kHz, and it correlates exact to where my loss is.
See my avatar. To me, it's self explanatory.

can't argue with that.

 

[NinaW]

Can anyone tell me what treatments are available on the NHS as I haven't been offered anything other than the nasal spray which seems to have cleared up my Eustachian tube issue?
Also, I don't have any hearing loss, I do have frequent pain in one ear and in the area around it, sometimes going into my jaw, sore throat on that side most of the time.

 

[Drone Draper]

I envy people who have low pitch T. I think I'd habituate to a low drone at 200hz more easily.

OP - are you using any white noise machines? There are loads out there, or apps you can have on your phone. These can play a sound that will help mask the sound. Do you think you could sleep with the noise playing?

In terms of the NHS - If you are having issues sleeping, they could prescribe you sleeping or anti-depressants medication. I'm on both atm, zopiclone for sleeping and mirtazapine as an anti-depressant. The latter does make you drowsy, so it helps with sleep. You should speak to your doctor about it, though.

 

[Michael Leigh]

Why worry about 'price'? Efficacy!

@Ken219

If one has £4,000/€4,556/$5,000 and upwards burning a hole in their pocket to spend on this treatment then there is no need to worry. I for one do not believe in Neuromod for one second, despite the information @Paulmanlike kindly submitted, I believe it's the same as Neuromodualation with a few tweaks to give the impression that it's something new and wonderful and at the cutting edge of tinnitus research and after years of development.

Anyone that signs up for this treatment, will be told each person will respond differently, so there's no guarantee of efficacy which answers your question! I know two people that have noise induced tinnitus that spent over £4000 on Neuromodulation with zero improvement in their tinnitus. When they complained they were quickly shown the door! I have no doubt this treatment will help some people with tinnitus but remember, tinnitus comes in different levels of severity. I do not believe putting on a pair of headphones and playing some low level tones into the ear for 60mins a day for a set period of weeks is going to help someone that has intrusive tinnitus with or without hyperacusis.

Anyone that is seasoned to tinnitus or is a veteran, knows that tinnitus is 90% mental. When a person has severe tinnitus, or finds it difficult to cope with, it is counselling, medication, sound therapy - separate or a combination of all three working together which helps the condition, enabling a person to have a better quality of life, especially when hyperacusis is present, white noise generators can help desensitise the auditory system.

Many of these medical professionals pushing Neuromod have probably never experienced tinnitus is their life and if they have, I doubt it's anything like any of the people that visit tinnitus forums. How then can they know anything about this condition? Granted, they are experts in their field and know all about the brain, auditory system and anatomy of the ear etc but the majority know nothing about tinnitus and how it affects a person's mental and emotional wellbeing.

Michael

 

[threefirefour]

No doubt with an extremely high price tag to match!

Michael

It's less than 2000 quid. Way cheaper than TRT for sure.

 

[threefirefour]

@Ken219

If one has £4,000/€4,556/$5,000 and upwards burning a hole in their pocket to spend on this treatment then there is no need to worry. I for one do not believe in Neuromod for one second, despite the information @Paulmanlike kindly submitted, I believe it's the same as Neuromodualation with a few tweaks to give the impression that it's something new and wonderful and at the cutting edge of tinnitus research and after years of development.

Anyone that signs up for this treatment, will be told each person will respond differently, so there's no guarantee of efficacy which answers your question! I know two people that have noise induced tinnitus that spent over £4000 on Neuromodulation with zero improvement in their tinnitus. When they complained they were quickly shown the door! I have no doubt this treatment will help some people with tinnitus but remember, tinnitus comes in different levels of severity. I do not believe putting on a pair of headphones and playing some low level tones into the ear for 60mins a day for a set period of weeks is going to help someone that has intrusive tinnitus with or without hyperacusis.

Anyone that is seasoned to tinnitus or is a veteran, knows that tinnitus is 90% mental. When a person has severe tinnitus, or finds it difficult to cope with, it is counselling, medication, sound therapy - separate or a combination of all three working together which helps the condition, enabling a person to have a better quality of life, especially when hyperacusis is present, white noise generators can help desensitise the auditory system.

Many of these medical professionals pushing Neuromod have probably never experienced tinnitus is their life and if they have, I doubt it's anything like any of the people that visit tinnitus forums. How then can they know anything about this condition? Granted, they are experts in their field and know all about the brain, auditory system and anatomy of the ear etc but the majority know nothing about tinnitus and how it affects a person's mental and emotional wellbeing.

Michael

Something tells me you're upset the CBT paradigm just became irrelevent.