Hyperacusis Hybrid Device: A Clinical Trial for Hyperacusis Patients (University of South Florida)

[lymebite]

The University of South Florida is now recruiting participants for a clinical trial for hyperacusis.

See full details with the flyer image below. Apparently they are having difficulty recruiting enough people to participate, so if you live in Florida and have hyperacusis, please consider signing up!

 

[Autumnly]

From twitter:

Hyperacusis patients in Florida: See about testing out the new hybrid #hyperacusis device. Details are here.

Hyperacusis Hybrid Device
Dr. David Eddins from the University of South Florida highlighted a key new effort Hyperacusis Research is supporting – the development of a hyperacusis hybrid device. This proposal (see description here) involves a dual device that suppresses loud noises above a certain threshold and also incorporates a sound generator for treatment. This device offers, in a single flexible instrument, a promising transitional intervention to sound-enriching therapy with loudness-suppressing compression processing that provides improved audibility and a broader dynamic range, without opposing the therapeutic effects of enriching sound therapy. The study includes a well-designed clinical trial which will be centered at the University of South Florida. Please contact us if you would like to participate and can travel to Tampa, Florida. - source

 

[Badger19]

Sounds extremely promising for hyperacusis!

 

[TheDanishGirl]

I never wished to be back in Florida more in my life, than now!

(been there twice in the past)

Really hope somebody will jump on this, and report back their experiences to us.

 

[BuzzyBee]

I wonder if it helps with reactive tinnitus (that may or may not be hyperacusis).

 

[Lucifer]

This is great news. Hopefully someone who lives in Florida can enter the clinical trial.

I wonder what the difference is between this device over WNGs.

 

[Daniel Lion]

This is great news. Hopefully someone who lives in Florida can enter the clinical trial.

I wonder what the difference is between this device over WNGs.

I think it said it's got a noise blocker, "loudness suppressing compression" feature as well as the sound therapy. So that's pretty cool, that feature would really complement hearing aids for safety issues. Just my take on what I read.

 

[Lucifer]

If anyone is entering this trial can you please let us know. It would mean a lot to us.

 

[RichardGuy]

I live in St. Pete, but could definitely go. Any idea if it's still open? I can't find anything

 

[lymebite]

Any idea if it's still open? I can't find anything

The most recent news I heard was that they were having difficulty finding enough patients. Have you tried contacting USF? Phone and email are at this link.

https://hyperacusisresearch.org/hyperacusis-device/

 

[RichardGuy]

The most recent news I heard was that they were having difficulty finding enough patients. Have you tried contacting USF? Phone and email are at this link.

https://hyperacusisresearch.org/hyperacusis-device/

Thanks! I sent an email. It would be a little tricky, seeing as I live 45 mins from the facility, but I could do it.

 

[Lucifer]

Thanks! I sent an email. It would be a little tricky, seeing as I live 45 mins from the facility, but I could do it.

Keep us up to date.

 

[RichardGuy]

Keep us up to date.

I got a response back on the 6th and immediately replied saying I would be glad to make the repeated drives for the testing. However that was Wednesday morning. Still no response.

 

[Lucifer]

I got a response back on the 6th and immediately replied saying I would be glad to make the repeated drives for the testing. However that was Wednesday morning. Still no response.

Thanks for the update and good luck.

 

[victoria9273]

This sounds so promising and well-informed. If I were in Florida I would definitely go.

 

[RichardGuy]

Thanks for the update and good luck.

Seems as though they are taking their sweet ass time for a reply. 4 days from initial inquiry, then already 4 days from my response and still waiting..

 

[RichardGuy]

So 8 days later (following another email from me) this is the response I got:

"Hello Mr . X"

"The schedule is fairly flexible. We will need to see you at specific intervals (usually 1 month) but can work with your schedule to determine which time of day or day of the week will work for you and this may vary from one appointment to the next."

"The treatment involves use of a multi-functional device which provides therapy sound and also serves as a sound attenuator (similar to an earplug) for sounds that you find uncomfortably loud. You will be asked to use the devices for a minimum of 8 hours per day. Please let me know what other questions I can answer for you."

Are they legit asking me to have ear buds shoved into my ears for 8 hours a day? Potentially playing loud sounds?

 

[Lucifer]

So 8 days later (following another email from me) this is the response I got:

"Hello Mr . X"

"The schedule is fairly flexible. We will need to see you at specific intervals (usually 1 month) but can work with your schedule to determine which time of day or day of the week will work for you and this may vary from one appointment to the next."

"The treatment involves use of a multi-functional device which provides therapy sound and also serves as a sound attenuator (similar to an earplug) for sounds that you find uncomfortably loud. You will be asked to use the devices for a minimum of 8 hours per day. Please let me know what other questions I can answer for you."

Are they legit asking me to have ear buds shoved into my ears for 8 hours a day? Potentially playing loud sounds?

I think they adjust the device based on your LDL's. If possible maybe build it up slowly

 

[RichardGuy]

I think they adjust the device based on your LDL's. If possible maybe build it up slowly

I want to say yes but holy crap! 8 hours! I mean, I'm lucky as all hell because I'm a student and even six months from now I still probably will be. But how do I find the time to do that all at once?

 

[Lucifer]

I want to say yes but holy crap! 8 hours! I mean, I'm lucky as all hell because I'm a student and even six months from now I still probably will be. But how do I find the time to do that all at once?

Do you know if it's 8 hours continuously or can you spread it out during the day?

 

[RichardGuy]

Do you guys want to ask the docs any questions? I am certain I will attend despite the issues I have outlined.

 

[Lucifer]

Do you guys want to ask the docs any questions? I am certain I will attend despite the issues I have outlined.

Not at the moment but appreciate you for doing the trial. I just want to see what the device looks like

 

[Daniel Lion]

Do you guys want to ask the docs any questions? I am certain I will attend despite the issues I have outlined.

Hi RichardGuy,

Happy you are following up on this... please keep us posted on how you do.

Best of luck, you are a champion!

 

[TheDanishGirl]

Do you guys want to ask the docs any questions? I am certain I will attend despite the issues I have outlined.

You are doing all of us hyperacusis sufferes a huge favour! I wish you the best of luck. I really hope this is the answer out of this hell.

I don't have any questions as of right now, but If I come up with any, I'll let you know.

 

[RichardGuy]

Not at the moment but appreciate you for doing the trial. I just want to see what the device looks like

To quote the doc, the devices are basically hearing aids that play continuous sounds that are set to a "comfortable" level.

Hi RichardGuy,

Happy you are following up on this... please keep us posted on how you do.

Best of luck, you are a champion!

I will post again when I have an appointment booked. If you don't hear back from me within 48 hours of the appointment booking and subsequent visit something has gone wrong.

You are doing all of us hyperacusis sufferes a huge favour! I wish you the best of luck. I really hope this is the answer out of this hell.

I don't have any questions as of right now, but If I come up with any, I'll let you know.

Yes.

My only concern is regarding the mute button/neuromodulation. According to the CEO of the device hyperacusis sufferers were the most likely to positively respond to using the device.

 

[RichardGuy]

Do you know if it's 8 hours continuously or can you spread it out during the day?

It can be spread out.

 

[Lucifer]

@RichardGuy

I reckon the hyperacusis device will be better than Lenire because it can be adjusted depending on your LDL's. Maybe if it resolves your hyperacusis, it might help with the tinnitus as well. If not, maybe after you have tried the hyperacusis device, try out Lenire.

 

[TheDanishGirl]

To quote the doc, the devices are basically hearing aids that play continuous sounds that are set to a "comfortable" level.

I will post again when I have an appointment booked. If you don't hear back from me within 48 hours of the appointment booking and subsequent visit something has gone wrong.

Yes.

My only concern is regarding the mute button/neuromodulation. According to the CEO of the device hyperacusis sufferers were the most likely to positively respond to using the device.

Hmmm, that actually doesn't sound promising... Isn't that just the same as white noise generators/TRT?

When it comes to Lenire/Neuromod I am not going to go for that. I believe subjecting myself to sounds through headphones is VERY risky, when my hyperacusis is this pronounced... and I can't "afford" the risk of making my hyperacusis worse.

 

[RichardGuy]

Hmmm, that actually doesn't sound promising... Isn't that just the same as white noise generators/TRT?

When it comes to Lenire/Neuromod I am not going to go for that. I believe subjecting myself to sounds through headphones is VERY risky, when my hyperacusis is this pronounced... and I can't "afford" the risk of making my hyperacusis worse.

Well, no. This isn't a tinnitus treatment, so treating hyperacusis may just be as simple as playing noise into the ears.

 

[TheDanishGirl]

Well, no. This isn't a tinnitus treatment, so treating hyperacusis may just be as simple as playing noise into the ears.

White noise generators are for both tinnitus and hyperacusis. It's supposed to help lower hyperacusis in some people. So that treatment already exits.