New University of Michigan Tinnitus Discovery — Signal Timing

[jay777]

my own sad experience have almost 0 idea how to properly withdraw you from them!

I will second that.

 

[alex01]

Do you think that the device will be worn in the same way by participants in the next trial? Or it depends how the patient can modulate his tinnitus?

 

[canyonero]

Same thing here, I was able to modulate it by biting down when chewing my food or by yawning and opening my mouth real hard. But lately I cannot modulate it in any way.

Anyone else here who was able to modulate their tinnitus and can no longer do that?

Sticking your jaw out was the most common way to change your tinnitus. It's most noticeable when my T is low.

https://www.tinnitustalk.com/thread...-louder-when-you-move-your-jaw-forward.23317/

 

[Samir]

Sticking your jaw out was the most common way to change your tinnitus.

Yeah I do recall being able to change it by pushing my jaw forward, or side to side. The change is hardly noticeable these days, but there is definitely some somatic connection. But I was able to influence it more and notice the change more when this all started.

I'm not sure how you qualify or quantify these things, in regards to the trial. Like I said, most people with tinnitus do have some somatic component to it. Even Susan Shore said something in one of the videos that up to 2/3 of tinnitus patients are able to modify their tinnitus in different ways, be it by moving your jaw, neck or pressing on some part of your face and so on.

I feel like this should not be the deciding factor for whether or not you get into the trial or not. But I can understand why they would be interested primarily in people that can modify their tinnitus. They want to make sure that they target a very specific group of people in the initial stage of the trial, so that they can get unambiguous outcome measures and ensure commercial success. This reminds me of the way Spinraza is currently being administered to patients in Europe. Spinraza is a new medication for spinal muscular atrophy that's hyped up in media as this new revolutionary medicine with very high success rate, well over 80% as I recall. But patients that have breathing deficiencies from birth are not allowed to take part, because it has not been studied in these patients, even though there is scientific evidence that suggests that Spinraza would be effective in these patients as well. But in the next phase of the trial they may decide to include these patients as well. Sometimes, the commercial success of a new medication is more important than helping as many people as possible. If anything, desperate parents may be able to get the medication off label once it gets approved.

 

[kelpiemsp]

The reason is because they theorize if it is somatic in nature, part of the T runs through the DCN. The DCN is what this therapy influences. It would negatively bias the results to measure a therapy against something it is not intended to work for.

 

[Annika1884]

Is there a chance that we could have this as a treatment option in 2020

 

[threefirefour]

Is there a chance that we could have this as a treatment option in 2020

Well Susan Shore has been saying "a couple of years" all year, and said in a livestream that 2020 is a reasonable date, so yeah.

 

[housemzk]

Received this earlier this afternoon from University of Michigan:
Thank-you for your interest in our tinnitus device and upcoming clinical trial. The response to our publication in January 2018 was overwhelming. Thousands of tinnitus sufferers have taken the time to reach out, share your stories, and request information about our upcoming clinical trial.

We are so grateful for your interest – you are the reason we're committed to developing clinically validated tools to treat tinnitus. Unfortunately, not everyone will be able to participate in our next clinical trial, but we want to stay in touch with you and keep you updated on our work.

Our next clinical trial will be based in Ann Arbor, MI and will require participants to attend weekly appointments in SE Michigan for 4-6 months. If you live near Michigan or would be willing to travel here weekly for the period of the trial, please click here to share your contact information so that we can reach out to you when we begin recruiting patients in early fall 2018.

If you are not located near Michigan or able to travel, we still want to keep in touch so we can update you on the team's progress and let you know if a device becomes commercially available. You can sign up for our newsletter at ArborTinnitus.com.

Kind Regards,
The Shore Lab
University of Michigan

 

[Ambassador]

I received the same email and responded and asked to be considered for the trial but I suspect they will be overwhelmed by volunteers. I think it's going to be a little like winning the lottery if you are selected to participate.

 

[housemzk]

I received the same email and responded and asked to be considered for the trial but I suspect they will be overwhelmed by volunteers. I think it's going to be a little like winning the lottery if you are selected to participate.

Agreed. I'm ruling myself out, sadly, as there's no way I can fly back and forth to Michigan for 4 to 6 months.

 

[Hania]

Got the same mail too. Won't participate because I live in Belgium..

But guys I have a small question: won't this machine induce hyperacusis? It's roughly the same frequency and volume as your tinnitus they said.

If it works, then I couldn't be more happy. The first treatment in human history to actually reduce tinnitus loudness.

 

[Pero1234]

Also from Belgium @Hania and also rooting for this device.

 

[Ambassador]

I think this test will hopefully produce the results we all want but that remains to be seen. I'm an 8 hour drive away but would consider making the drive if that's what it takes but as I mentioned, the response has to be in the tens of thousands of people and the selected group is most likely going to be from their local area.

 

[Anthonyr]

This device will make them billions if they can pull it off. Keeping my fingers crossed.

 

[Charbee]

Fingers crossed

 

[NoBigDeal]

Got the same mail too. Won't participate because I live in Belgium..

But guys I have a small question: won't this machine induce hyperacusis? It's roughly the same frequency and volume as your tinnitus they said.

If it works, then I couldn't be more happy. The first treatment in human history to actually reduce tinnitus loudness.

Where did you read that ?
I asked on this forum some weeks ago which kind of sound was used in susan shore's therapy, and nobody had the response.

 

[Ambassador]

It's more than just sound. Sound treatments, masking, notched, nature sounds and white noise have been around forever. They aren't a cure but help. There's some stimulation in addition to sound with the Shore device, I want to say Vagus nerve??
The down side of this it that their research and this technique have been around for years and I can't imagine what miracle has happened to make this round of students different than previous years.
I'm afraid this is just a teaching project that's destined for nowhere but having expressed all these negative thoughts I will remain optimistic and be part of it if they will have me.

 

[Hania]

Believe me everybody,..after 5 years from now,no body will suffer of tinnitus on earth.,atleast 10 good successful treatment are on the way..the tinnitus mechanism is understood since less then 2 years..Researchs in last 5 years are more in quantity than what all scientifics did in last 100 year..Just patience my friends..God has created uss to suffer for a while but not for a whole life..he is the one who will guide those researchers to find us the pill witch stop our T...before i got T those were the days...and 5 ears from now i promise you all,you will enjoy the days again

LOL that being said in 2013

 

[brummygirl]

I received the email too. We are in the U.K. and so won't be volunteering to go at this stage.
Clicked through, though, and I see that to date 75 people have volunteered. I am a little surprised the number is so low but it is early days yet, I guess.

 

[threefirefour]

I received the email too. We are in the U.K. and so won't be volunteering to go at this stage.
Clicked through, though, and I see that to date 75 people have volunteered. I am a little surprised the number is so low but it is early days yet, I guess.

Well this device is moderately low-key in the medical world and the requirements are extremely specific. Have to live around there or commute once a week, 6 months. I'm not surprised at all it's low.

 

[ee9892]

Signed up for the trial with their new link. Im 40 minutes away from them so fingers crossed. Ill keep you all updated.

Id imagine they start selecting people soon if they are kicking this off in August.

 

[WaqasVic]

hey guys not to go out off topic but I got this mail... like 4 days ago:

the-shore-lab@umich.edu
12 May (5 days ago)
to me

Hello,

We are reaching out because our previous email was not clear on how tos ubmit your information for interest in our study.

For those of you who are able to come to Ann Arbor once a week for 6 months,please click here to set up a profile and register. Once your information has been received, and you qualify for further evaluation, you will be contacted by a study team member.

Please note this a different link than the one provided in the previous email.

 

[threefirefour]

hey guys not to go out off topic but I got this mail... like 4 days ago:

the-shore-lab@umich.edu
12 May (5 days ago)
to me

Hello,

We are reaching out because our previous email was not clear on how tos ubmit your information for interest in our study.

For those of you who are able to come to Ann Arbor once a week for 6 months,please click here to set up a profile and register. Once your information has been received, and you qualify for further evaluation, you will be contacted by a study team member.

Please note this a different link than the one provided in the previous email.

It's an email they sent us. Not off topic at all.

Btw, who here plans on participating in the trials?

 

[Ambassador]

It's an email they sent us. Not off topic at all.

Btw, who here plans on participating in the trials?

It's not up to show wants to do it, they will be selecting candidates and from the sound of it, they will be drawing from the people who are in their immediate area.

 

[kelpiemsp]

It's not up to show wants to do it, they will be selecting candidates and from the sound of it, they will be drawing from the people who are in their immediate area.

At this point it kind of is. There are not 1000s of people signing up to do these studies. If they are recruiting they are not getting the numbers they need. And it sounds like they are still a little short. Plus there is a high drop out rate. When you go in, and read the consent form, and they tell you there is a chance your T will be made permanently louder, it can sure scare you.

Edit: for clarification I am in a similar trial based off the same research.

 

[threefirefour]

It's not up to show wants to do it, they will be selecting candidates and from the sound of it, they will be drawing from the people who are in their immediate area.

I know that but the more people on here who sign up with the intent to participate, the higher chances one of us has getting on the trial.

 

[Ambassador]

I know that but the more people on here who sign up with the intent to participate, the higher chances one of us has getting on the trial.

At this point it kind of is. There are not 1000s of people signing up to do these studies. If they are recruiting they are not getting the numbers they need. And it sounds like they are still a little short. Plus there is a high drop out rate. When you go in, and read the consent form, and they tell you there is a chance your T will be made permanently louder, it can sure scare you.

Edit: for clarification I am in a similar trial based off the same research.

Well if they need people, I'm ready, I emailed the study and then emailed as many individuals as I could find their email addresses. I told them I am retired with plenty of time to devote to whatever they need but so far no takers.

 

[threefirefour]

Well if they need people, I'm ready, I emailed the study and then emailed as many individuals as I could find their email addresses. I told them I am retired with plenty of time to devote to whatever they need but so far no takers.

You probably did, but did you try making a umich account and signing up for the study?

 

[kelpiemsp]

Well if they need people, I'm ready, I emailed the study and then emailed as many individuals as I could find their email addresses. I told them I am retired with plenty of time to devote to whatever they need but so far no takers.

Awesome! I don't know your age, but there is preference for people under 65 and with a shorter onset of T. But awesome either way!

 

[threefirefour]

Awesome! I don't know your age, but there is preference for people under 65 and with a shorter onset of T. But awesome either way!

Shorter onset? Like have had it less? According to their paper the two people who didn't have a significant reduction in TFI had tinnitus for less than a year. Granted two people is an extremely tiny sample size, but with our limited information it seems people who have had it longer benefit more.