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

Hello again all!

Sorry for the delay. I've been having a shitty week and today was especially bad- some pain and heightened ringing after getting into a car with blaring music.

But I do bring good news!

 

... ok, a tiny bit of bad news now.

My doc was insistent on giving me prednisone for my trauma yesterday and as such the doctors have insisted that my initial visit be pushed back to December 3. So, counting today, that's 12 days out. You should hear back in the afternoon on the 3rd.

I don't think I need to, considering how long some of these trials and processes are, but I thought I should remind everyone that I'll be on as frequently as possible to discuss the treatment as it happens, however the trial could last until July 2020. As such I won't be comfortable coming to any conclusions until then (or if I don't make the cut, or if I have to drop out for whatever reason).

 

Hey guys,

I'm in a bit of a pickle right now. It's been one week since that car stereo incident and while I was given a 4 mg / 6 day dose pack of methylprednisolone last Friday my ears have not been the same. I'm still dealing with new tones in my ears and the new sounds are extremely "reactive" although the pain is very very slight most of the time and there is no fullness as far as I can tell.

I was given a 6 day / 10mg pack (60 for the first day, 50 second, etc) of regular prednisone by another doctor and the option for me to take this one as well is seriously tempting. The problem is the trial. By the time Tuesday comes around (if I start taking the pills today) I'll still be taking 20mg of pred and 10mg the next day. I am almost certain that the initial appointment will be rescheduled if I take them now, but I also fear the possibility of waiting too long to take the pills.

I don't know if a hearing test will be done at appt #1 but there probably will be one. And I don't want to disappoint anyone even if it means pushing the test back 2 weeks.

Thanks guys. @Bill Bauer

 

What do you mean?

Why would it be rescheduled?

 

As I mentioned in my last post the initial appointment (which was supposed to take place on the 25th?) was rescheduled after I informed the doctors I was given prednisone by my doctor.

 

Hi again guys,

Some guidance would be greatly appreciated.

It's been 9 days since the car stereo incident and I still get occasional fullness and pain in the ears. My tinnitus is, of course, worse than ever before and it's not just the loudness, it's the remarkable number of tones- at least four, plus the hissing, although thankfully they appear to be the same in each ear.

I can't believe it, as it honestly didn't seem that loud, but there it is. I still have the 60 mg taper pack my doctor gave me. I've tried to fight the urge to bitch out and at least try to wait until they call me on Monday to see if everything is okay, but another part of me says that I should take the prednisone as I can always reschedule at a later date. On the other hand we are closing in on two weeks post-trauma and I'm worried about the reduced effect of the steroids.

Thoughts appreciated! @Bill Bauer sorry again man

 

Sorry Richard,

Perhaps you can take the prednisone and talk to the lab people about mking a new appointment. Shit happens and your health and mental health are number 1.
Follow your heart, it's fine...

Good luck and hoping those tones and spike calms down ASAP.

 

Thank you for your advice.

Unfortunately I received an email from the "team" today, when they were supposed to call me this morning, saying that the initial prednisone course made me ineligible for an initial screening until January 2020.

So yeah, now I'm feeling pretty fucking mad, not gonna lie. I didn't even tell them I was taking a second course of prednisone, and if they really wanted to wait a full month post course, why didn't they tell me before they rescheduled to just a week later?!!?!?

Now I am happy I bitched out and started taking the pred yesterday. I'm sure that everything will be out of my system over a fucking month from now! Damnit.

Thankfully I can schedule right now but I'm so sorry I disappointed you guys. Seems like the choice wasn't even mine, considering my docs initially recommended prednisone on the 22nd.

 

Hey, don’t worry about a thing.
Do your course of steroids and make sure to eat fruit, veg, fish and lots of water.
Stay fit. Great news they rescheduled you. Richard, you are not carrying any load for the community here, it’s cool. We want you safe and healthy and happy.

Take good care and don’t worry about us. Everything is cool.

Take care of yourself and have a chill December,

Peace

 

Thank you.

I will be heading back January 6.

 

https://www.tinnitustalk.com/thread...aring-aid-for-tinnitus-and-hyperacusis.37876/

What is the difference between this device and the hearing aid @Jason E is talking about receiving from Myriam Westcott in the thread I linked?

 

This describes my current T pretty well that is now reactive and came on at the same time as Hyperacusis.

 

The appointment is in the later morning, and I should have results for you guys by 6pm EST.

 

OK! So, good news and bad. The good news is I am all but definitely "eligible" to continue. I had the full range of tests done (standard air conduction, bone conduction, LDLs) and I'll have the results below. As part of the testing I also sat in the booth as they cranked up the noise until I was no longer comfortable. I may have tried to tough it out a little too much and my ears have had very brief pains for the last hour. But I doubt actual damage was done.

Also, the noise fatigue is real. I climbed out of the booth and practically fell down into a chair.

The bad news is that the actual fitting of the devices won't happen until Friday at the earliest, as there was so much crap in my ears from my hydrocortisone acetic acid treatment for an ear infection back in December that the researchers did not feel comfortable putting the silicone in my ears for the fitting. Oh, and yeah, apparently they need to do that too. I was cautioned very strongly by the head researcher that there existed the chance of an ear injury due to the fitting.

So the plan is to return to my ENT tomorrow, have the ears cleaned (manually) and return to the clinic Friday.

Apparently they still have quite a few spots open if you want to sign on.

 

Oh, my hearing test. Yeah, it's still a mystery as to how I have tinnitus this bothersome and hyperacusis bad enough to give me headaches at cocktail parties if this is what my range looks like. They even offered to test to 20k hz at a later date.

Keep in mind this isn't the official reading just something I grabbed with my phone.

 

Wow my hearing stinks lol

Pleas ask and be careful how your ears will be cleaned. Don’t leave anything to chance.

Good luck, thanks for the lurkers for the report.

 

No, thanks to @lymebite I actually found out about this. I actually attend a university right down the street and didn't know about this trial.

 

@RichardGuy

Did you end up getting the hyperacusis device?

Could you also upload a picture as well?

 

Hi everyone and @Lucifer (sorry for the delay, I never got a notification)

Long story very short. I'm sorry. I went into the initial appt on the 7th thinking I had a fix for my hyperacusis. There was some concern over a possible infection and by the 15th I was given a clean bill of health. On the 22nd they emailed once again to say they were still reviewing my data and hoped to get back to me in the next 48 hours.

On the 29th I popped into my ENT with some ear pain and noticeable fullness, to be told I had a staph infection, which is my fourth infection (two bacterial, one fungal) in four months. The response from the research team was immediate- I was to wait *two months* and then hopefully be reevaluated with the hope that the infection would clear up and not affect treatment or results. In addition- and they did not phrase this as a suggestion- they wanted to see that I had two months of "behavioral therapy" completed before I would return.

They say there is a chance of my returning to the trial in April but I'm really sorry guys.

My hyperacusis keeps worsening noticeably and last night the loud beeps from a checkout machine were causing me such pain that I simply asked to checkout at a regular register. I don't have much else to go on but this trial.

 

Hi, any word from them about this trial?

 

I learned last week from Dr. Secor, audiologist at the University of South Florida, that they have received approval to extend the hyperacusis clinical trial and add new patients. So, they are actively recruiting, for anyone with hyperacusis who is interested and meets the criteria, especially being located in Florida.

More details in the graphic, including telephone and email contact info.

 

It does seem like a fairly practical solution to a complicated problem. I wonder if it will be out before FX-322.

 

They are still recruiting, however, I must warn you that it did not do as much as I expected. The devices are very effective at blocking out painfully loud sounds and the masking sounds are very good. Maybe they will work better for you guys.

 

So, big correction I have to make.

I still have hyperacusis. That much is obvious. However, I went in for my final test this last week and the difference was dramatic. In all fields I had between a 10 and 25 dB increase in all thresholds. I am waiting for more official results but this was what I was told. They actually maxed out the volume for the conversation portion of the tests before I complained of discomfort.

 

This is really good news! I wonder if it would continue to improve your hyperacusis if you wore the device for a longer period of time. Do you think you will end up purchasing one down the line?

 

Sorry to resurrect this dead thread. I've been away for a while.

Would I purchase one of these devices? Probably but there are some serious downsides, at least for me. One of my devices was probably damaged at some point and when it picked up the tiniest bit of wind noise it would create a "glitch" sound effect, like a radio message that's barely received due to something blocking the transmission or being too far.

On top of that there was constant maintenance, constant. If I pushed the device into my ear as instructed (the open dome, not the plug) there was a very high chance it would clog with earwax if my ears weren't fairly clean as I have an issue with constant wax build up. So if I didn't have my cleaning device or it wasn't socially appropriate I would have to leave them out because a clogged device only acted as an earplug and made my tinnitus more noticeable.

The last issue is cost. The last time I was quoted for hearing aids the price came out to something like $1,500 and that's with Blue Cross/Shield insurance. I could easily see the price go for double without insurance and for a much less common device.

The improvement over, say, Walker Silencer ear plugs (for casual use) or Ops Core AMP NFMI plugs (for serious stuff) isn't there.

 

So the device trial is over?

They are selling it now?

 

Hi guys, just jumping in to ask if anyone knows how things are going with this device?

 

They've been doing trials with this exact type of "therapy" for almost 25 years.

It really helped me! But no, they're not selling it or anything like that. I'm not sure where I would even start. I could ask the researchers if I dug through my old emails where to get something similar if you'd like though.