University of Minnesota Tinnitus Research with Acoustic and Body Stimulation

[Stakovic]

@kelpiemsp
Any updates about your EEG ?

 

[kelpiemsp]

It in 1.5 hours will report back tomorrow.

 

[kelpiemsp]

I had my EEG on friday. It was kind of a hellish session, probably the worst so far. I had to sit in the sound proof booth again and match my tinnitus. That required 5 minutes in a sound proof booth with ear plugs in silence. Matching the sound, waiting 5 minutes etc. for 5 times. Then they hooked up the EEG and measured my baseline, in quiet. They than performed an ABR. On a side note, does anyone know how loud an ABR is compared to a VEMP? I canceled a VEMP test because I thought it would be too loud, but I handled the ABR fine.

On another side note, these required tests could be for why the don't recommend people with hyperacusis as candidates for the trial. I was told the actual treatment would be quieter.

Anyways, after the EEG and ABR, they then had me sit for 8 minutes with the electrical stimulation, then 8 with the acoustic, and then 8 with both. It was hell.

On the bright note, my next session will be my first one where I will actually get to experience the treatment, before they tailor it to my specific timing!

 

[GregCA]

Anyways, after the EEG and ABR, they then had me sit for 8 minutes with the electrical stimulation, then 8 with the acoustic, and then 8 with both. It was hell.

I'm afraid I don't understand the specifics: why was it hell? Were you hurt by any of these procedures? Were they just uncomfortable?

 

[kelpiemsp]

I'm afraid I don't understand the specifics: why was it hell? Were you hurt by any of these procedures? Were they just uncomfortable?

I should have been more clear. My tinnitus is super loud when in a quiet environment. I had to wear ear plugs while in a soundproof booth. And then I am asked to listen to listen it and try to relax. It's hard for me to do that

 

[GregCA]

I should have been more clear. My tinnitus is super loud when in a quiet environment. I had to wear ear plugs while in a soundproof booth. And then I am asked to listen to listen it and try to relax. It's hard for me to do that

Ah yes... ok. Thanks for clarifying.

 

[Stakovic]

I had my EEG on friday. It was kind of a hellish session, probably the worst so far. I had to sit in the sound proof booth again and match my tinnitus. That required 5 minutes in a sound proof booth with ear plugs in silence. Matching the sound, waiting 5 minutes etc. for 5 times. Then they hooked up the EEG and measured my baseline, in quiet. They than performed an ABR. On a side note, does anyone know how loud an ABR is compared to a VEMP? I canceled a VEMP test because I thought it would be too loud, but I handled the ABR fine.

On another side note, these required tests could be for why the don't recommend people with hyperacusis as candidates for the trial. I was told the actual treatment would be quieter.

Anyways, after the EEG and ABR, they then had me sit for 8 minutes with the electrical stimulation, then 8 with the acoustic, and then 8 with both. It was hell.

On the bright note, my next session will be my first one where I will actually get to experience the treatment, before they tailor it to my specific timing!

Did they explain you on the compture your EEG ?

 

[kelpiemsp]

Did they explain you on the compture your EEG ?

I asked about that! However, the person interpreting the results is using it from a biomechanical and electrical engineering perspective. Thus the readings/measurements that are commonly used for say audiology are not used. The audiologist performing the test basically said it was unreadable to her at the moment, but at my next appointment (in two fridays) they will have gone through the EEG etc.

 

[Manny]

I am praying with every bone in my body (cochlea definitely included) that this treatment will be a genuine success. But I'm just nervous it'll end up like The Tinnitus Clinic's ACRN, which seems to be kinda sorta shown to sorta kinda work, if you know what I mean.
Somebody please prove me wrong!
Oh well. I guess that's what trials are for. @kelpiemsp again, many many thanks for your updates.

 

[Stakovic]

@kelpiemsp
How many session will you do ?

 

[kelpiemsp]

@kelpiemsp
How many session will you do ?

9 for parameters where I give feedback on what works and then 4 where it's double blind controlled two reals and two sham.

 

[threefirefour]

9 for parameters where I give feedback on what works and then 4 where it's double blind controlled two reals and two sham.

Your first treatment session begins this Friday right?

 

[kelpiemsp]

Your first treatment session begins this Friday right?

No, it's the following Friday. It's marked on my calendar too. I can't wait!

 

[threefirefour]

No, it's the following Friday. It's marked on my calendar too. I can't wait!

Me too. I hope it goes really well. I think how this goes will be some indication of how future similar treatments go.

 

[Jiri]

Again, thanks for keeping us updated @kelpiemsp . When they want you to match your tinnitus sound (or sounds) isn't it difficult in case you have multi tonal tinnitus?

I don't understand how this treatment would then work for people who have more than just one or two sounds? Like in the Desyncra youtube video where the old man has to show the lady his tinnitus frequency on the phone.

 

[kelpiemsp]

Me too. I hope it goes really well. I think how this goes will be some indication of how future similar treatments go.

Yes, but also remember, they are still learning the parameters, and my case would be unusually tough to treat. Not because of the severity necessarily, but because I have had it most of my life. If it reduces this new (6 month) "TMJ/ETD/Somatic I hate with all my life tone" I would happily enjoy the nice 2khz horn, which is drowned out by the 14khz electrical screech.

Again, thanks for keeping us updated @kelpiemsp . When they want you to match your tinnitus sound (or sounds) isn't it difficult in case you have multi tonal tinnitus?

I don't understand how this treatment would then work for people who have more than just one or two sounds. Like in the Desyncra youtube video. The old man has to show the lady his tinnitus frequency on the phone.

It is difficult, it is very difficult. My "guess" is either a) you pick a tone and do treatment for that one until it is reduced or eliminated and then move on to the next or b) (which is what the students told me) matching the tone isn't that important. "It's not like we could match guinea pigs tone" and yet they can still reduce tinnitus.

Thus, I am not totally certain the point of tone matching with this type of intervention. I will ask them again.

 

[Jiri]

Ok the 'b)' version sounds better, and it'd make even sense given the guniea pigs example. A little bit of mystery.

 

[threefirefour]

Yes, but also remember, they are still learning the parameters, and my case would be unusually tough to treat. Not because of the severity necessarily, but because I have had it most of my life. If it reduces this new (6 month) "TMJ/ETD/Somatic I hate with all my life tone" I would happily enjoy the nice 2khz horn, which is drowned out by the 14khz electrical screech.



It is difficult, it is very difficult. My "guess" is either a) you pick a tone and do treatment for that one until it is reduced or eliminated and then move on to the next or b) (which is what the students told me) matching the tone isn't that important. "It's not like we could match guinea pigs tone" and yet they can still reduce tinnitus.

Thus, I am not totally certain the point of tone matching with this type of intervention. I will ask them again.

Why would having tinnitus for your whole life be a complication if I could ask?

 

[kelpiemsp]

Why would having tinnitus for your whole life be a complication if I could ask?

Well, frankly, I don't know what silence sounds like. I can't imagine how I could rate a 0 on the tinnitus masking or tinnitus handicap inventory test. Maybe it will be like those videos where someone sees for the first time and I will walk around all day with ear plugs on in awwweee

On another note, for some reason, in the study there was preference to tinnitus less than 5 years old. Not sure why? I still got in so who knows.

I guess it's hard for me to believe, in my case, that I can possibly be T free. I'm still waiting for someone to post a "tinnitus resolved after 30 years" story

 

[Jiri]

Or it could be you that someone.

 

[Jcb]

Well, frankly, I don't know what silence sounds like. I can't imagine how I could rate a 0 on the tinnitus masking or tinnitus handicap inventory test. Maybe it will be like those videos where someone sees for the first time and I will walk around all day with ear plugs on in awwweee

On another note, for some reason, in the study there was preference to tinnitus less than 5 years old. Not sure why? I still got in so who knows.

I guess it's hard for me to believe, in my case, that I can possibly be T free. I'm still waiting for someone to post a "tinnitus resolved after 30 years" story

As Juri said hopefully you will be that person that posts that their "tinnitus resolved after 30 years". Thanks for keeping us all updated man, it's much appreciated.

 

[noitseuq]

Well, frankly, I don't know what silence sounds like. I can't imagine how I could rate a 0 on the tinnitus masking or tinnitus handicap inventory test. Maybe it will be like those videos where someone sees for the first time and I will walk around all day with ear plugs on in awwweee

On another note, for some reason, in the study there was preference to tinnitus less than 5 years old. Not sure why? I still got in so who knows.

I guess it's hard for me to believe, in my case, that I can possibly be T free. I'm still waiting for someone to post a "tinnitus resolved after 30 years" story

Don't loose hopes. You should be confident with that trial, and I do bet you are.

Daily, there are thousands and thousands of people being behind this and actually expecting to get good news from you to inform us.

Hope God's get involved in this, we need to get tinnitus free.

 

[Bam]

@kelpiemsp In all seriousness if Shore and those kids comes through for you and you walk out of that lab in blissful silence and report it here YOU personally might save a handful of lives....no pressure. You to us might be like the Neil Armstrong of tinnitus. Godspeed brave labrat man!

 

[Bam]

@kelpiemsp In all seriousness if Shore and those kids comes through for you and you walk out of that lab in blissful silence and report it here YOU personally might save a handful of lives....no pressure. You too us might be like the Neil Armstrong of tinnitus. Godspeed.

 

[threefirefour]

@kelpiemsp In all seriousness if Shore and those kids comes through for you and you walk out of that lab in blissful silence and report it here YOU personally might save a handful of lives....no pressure. You to us might be like the Neil Armstrong of tinnitus. Godspeed brave labrat man!

Very nice but this is a different research team. Susan Shore is not involved. Her trial begins in 3-4 months.

 

[Bam]

Very nice but this is a different research team. Susan Shore is not involved. Her trial begins in 3-4 months.

The more the merrier! Thank God there's some realisation that a cure is required big time.

 

[threefirefour]

The more the merrier! Thank God there's some realisation that a cure is required big time.

Absolutely. What I find great is if this experiment succeeds (and there's a good chance it does), then that gives more weight to Dr. Shores theory about reducing tinnitus.

 

[Mathew Gould]

Nope. If it can be modulated it is most likely running through the DCN which anything from the cervical spine would run through as well. However they will be doing a pre and post EEG! They may be doing fMRIs as well. My first session is on May 11th. It's 2.5 hours every other week for 12 weeks and then 4 sessions once a month.

@kelpiemsp When you say modulated, does that mean when you move your neck or jaw your entire tinnitus goes away? Or the sound of the tinnitus goes up and down, etc??

 

[kelpiemsp]

@kelpiemsp When you say modulated, does that mean when you move your neck or jaw your entire tinnitus goes away? Or the sound of the tinnitus goes up and down, etc??

Modulate just means change. Mine increase in volume and changes pitch slightly. Like bending a guitar string.

 

[GregCA]

Modulate just means change. Mine increase in volume and changes pitch slightly. Like bending a guitar string.

I get that feeling when I exert some force while chewing. It's hard to reproduce unless I have something I can stick between my teeth though.