Re: Momentum

[Guest guest]

I live in the San Francisco Bay Area. No insurance. Would be thrilled to

volunteer in research that is not drug-based.

>

> Welcome to our new members! I have been tearfully reading your stories and

your " I'm not alone " eureka moments. It was the same for me. And I get

emotional all over again. I am 52 and have been getting worse since I was 8

years old.

>

> We have an amazing opportunity here now to continue this momentum and raise

our flag high. I know, I know, the Today Show hasn't even aired yet so why am I

thinking about the next step already? Because people tend to have short

attention spans. I have gotten a huge response from people just from posting

the NYT article on FaceBook.

> Is it time for bumper stickers? (Nothing mean or undignified: just the

website info and maybe graphics.)

> Is it time for us to visit otoneurologists? I think Dr J was compiling a list

of MDs who are good and those that are not so good. Should we separate by

region and (if you have insurance and/or the means to do so) make appointments

with these " good " doctors? Or should we all find otoneurologists since a GP

won't know what to do?

>

> I live outside San Diego and have access to UCSD which has a research arm. I

have seen an otoneurologist there (twice) who appears to be trying his best to

get some answers without me coming back all the time ($). Do you live anywhere

where there is a medical school? Research facility? Would we tell our oto's the

name of the other oto's so they can collaborate?

>

> Or am I just so full of adrenaline that I should shut it down and chill? B^)

>

[Guest guest]

Definitely agree we should keep pushing toward with awareness. I'm 100% for it and will help out any way I can

> Welcome to our new members! I have been tearfully reading your stories and your " I'm not alone " eureka moments. It was the same for me. And I get emotional all over again. I am 52 and have been getting worse since I was 8 years old.

> > We have an amazing opportunity here now to continue this momentum and raise our flag high. I know, I know, the Today Show hasn't even aired yet so why am I thinking about the next step already? Because people tend to have short attention spans. I have gotten a huge response from people just from posting the NYT article on FaceBook.

> Is it time for bumper stickers? (Nothing mean or undignified: just the website info and maybe graphics.) > Is it time for us to visit otoneurologists? I think Dr J was compiling a list of MDs who are good and those that are not so good. Should we separate by region and (if you have insurance and/or the means to do so) make appointments with these " good " doctors? Or should we all find otoneurologists since a GP won't know what to do?

> > I live outside San Diego and have access to UCSD which has a research arm. I have seen an otoneurologist there (twice) who appears to be trying his best to get some answers without me coming back all the time ($). Do you live anywhere where there is a medical school? Research facility? Would we tell our oto's the name of the other oto's so they can collaborate?

> > Or am I just so full of adrenaline that I should shut it down and chill? B^) > > >

[Guest guest]

Hey Kat - I'm in SF area too - on the peninsula, work in the south bay. We're near stanford??Seems I don't have it as intense as other but enough that a couple people forwarded me the article (including my dad, who was the #1 offender of chewing with his mouth open, and saying "oh get over it.") And posting it on facebook got a lot of "WOW" responses from my close friends.Chewing and whistling get me big time - my boyfriend is kind enough to only eat chips & whistle at work I've also noticed that if I haven't eaten in a while & my blood sugar is low it is 100 times worse - every sound in the world gets me at that point. Anyone have that??And I have a younger sister who is the same! SO cool to know I'm not alone.

I live in the San Francisco Bay Area. No insurance. Would be thrilled to volunteer in research that is not drug-based.

>

> Welcome to our new members! I have been tearfully reading your stories and your "I'm not alone" eureka moments. It was the same for me. And I get emotional all over again. I am 52 and have been getting worse since I was 8 years old.

>

> We have an amazing opportunity here now to continue this momentum and raise our flag high. I know, I know, the Today Show hasn't even aired yet so why am I thinking about the next step already? Because people tend to have short attention spans. I have gotten a huge response from people just from posting the NYT article on FaceBook.

> Is it time for bumper stickers? (Nothing mean or undignified: just the website info and maybe graphics.)

> Is it time for us to visit otoneurologists? I think Dr J was compiling a list of MDs who are good and those that are not so good. Should we separate by region and (if you have insurance and/or the means to do so) make appointments with these "good" doctors? Or should we all find otoneurologists since a GP won't know what to do?

>

> I live outside San Diego and have access to UCSD which has a research arm. I have seen an otoneurologist there (twice) who appears to be trying his best to get some answers without me coming back all the time ($). Do you live anywhere where there is a medical school? Research facility? Would we tell our oto's the name of the other oto's so they can collaborate?

>

> Or am I just so full of adrenaline that I should shut it down and chill? B^)

>

[Guest guest]

Hey lisa,

I'm in the north bay, in Marin. I also have a sister with Misophonia. My dad and

another sister have other hearing sensitivities, but not misophonia.

As for diet, I didn't think about it, but you're probably right about the blood

sugar thing. I do get more out of sorts when my blood sugar is off.

> > >

> > > Welcome to our new members! I have been tearfully reading your stories and

your " I'm not alone " eureka moments. It was the same for me. And I get emotional

all over again. I am 52 and have been getting worse since I was 8 years old.

> > >

> > > We have an amazing opportunity here now to continue this momentum and

raise our flag high. I know, I know, the Today Show hasn't even aired yet so why

am I thinking about the next step already? Because people tend to have short

attention spans. I have gotten a huge response from people just from posting the

NYT article on FaceBook.

> > > Is it time for bumper stickers? (Nothing mean or undignified: just the

website info and maybe graphics.)

> > > Is it time for us to visit otoneurologists? I think Dr J was compiling a

list of MDs who are good and those that are not so good. Should we separate by

region and (if you have insurance and/or the means to do so) make appointments

with these " good " doctors? Or should we all find otoneurologists since a GP

won't know what to do?

> > >

> > > I live outside San Diego and have access to UCSD which has a research arm.

I have seen an otoneurologist there (twice) who appears to be trying his best to

get some answers without me coming back all the time ($). Do you live anywhere

where there is a medical school? Research facility? Would we tell our oto's the

name of the other oto's so they can collaborate?

> > >

> > > Or am I just so full of adrenaline that I should shut it down and chill?

B^)

> > >

> >

> >

>

[Guest guest]

Hi, Kat and lisa,

Would you both be interested in meeting with me to work with some approaches to

treating misophonia? I will be in Larkspur (Marin) from mid-November, and would

like very much to interview and work with you.

Please reply to tarabecon@... with your details and we can chat.

With regards,

Tara

(www.lastingchanges.co.uk)

Let your email find you with BlackBerry from Vodafone

Re: Momentum

 

Hey lisa,

I'm in the north bay, in Marin. I also have a sister with Misophonia. My dad and

another sister have other hearing sensitivities, but not misophonia.

As for diet, I didn't think about it, but you're probably right about the blood

sugar thing. I do get more out of sorts when my blood sugar is off.

> > >

> > > Welcome to our new members! I have been tearfully reading your stories and

your " I'm not alone " eureka moments. It was the same for me. And I get emotional

all over again. I am 52 and have been getting worse since I was 8 years old.

> > >

> > > We have an amazing opportunity here now to continue this momentum and

raise our flag high. I know, I know, the Today Show hasn't even aired yet so why

am I thinking about the next step already? Because people tend to have short

attention spans. I have gotten a huge response from people just from posting the

NYT article on FaceBook.

> > > Is it time for bumper stickers? (Nothing mean or undignified: just the

website info and maybe graphics.)

> > > Is it time for us to visit otoneurologists? I think Dr J was compiling a

list of MDs who are good and those that are not so good. Should we separate by

region and (if you have insurance and/or the means to do so) make appointments

with these " good " doctors? Or should we all find otoneurologists since a GP

won't know what to do?

> > >

> > > I live outside San Diego and have access to UCSD which has a research arm.

I have seen an otoneurologist there (twice) who appears to be trying his best to

get some answers without me coming back all the time ($). Do you live anywhere

where there is a medical school? Research facility? Would we tell our oto's the

name of the other oto's so they can collaborate?

> > >

> > > Or am I just so full of adrenaline that I should shut it down and chill?

B^)

> > >

> >

> >

>

[Guest guest]

I submitted my info at http://misophonia-provider.com/Home_Page.html. I'm in the D/FW, TX area. Several university hospitals within about a 4 hour drive of here, and 2-3 locally. So, yes, I'd really appreciate a list of specialists who won't respond with " lolwut? " when I discuss this with them.

 So, no, I don't think you should chill. The worst think anyone can do is waste momentum. Regards,Rob  

 

Welcome to our new members! I have been tearfully reading your stories and your " I'm not alone " eureka moments. It was the same for me. And I get emotional all over again. I am 52 and have been getting worse since I was 8 years old.

We have an amazing opportunity here now to continue this momentum and raise our flag high. I know, I know, the Today Show hasn't even aired yet so why am I thinking about the next step already? Because people tend to have short attention spans. I have gotten a huge response from people just from posting the NYT article on FaceBook.

Is it time for bumper stickers? (Nothing mean or undignified: just the website info and maybe graphics.)

Is it time for us to visit otoneurologists? I think Dr J was compiling a list of MDs who are good and those that are not so good. Should we separate by region and (if you have insurance and/or the means to do so) make appointments with these " good " doctors? Or should we all find otoneurologists since a GP won't know what to do?

I live outside San Diego and have access to UCSD which has a research arm. I have seen an there (twice) who appears to be trying his best to get some answers without me coming back all the time ($). Do you live anywhere where there is a medical school? Research facility? Would we tell our oto's the name of the other oto's so they can collaborate?

Or am I just so full of adrenaline that I should shut it down and chill? B^)

-- Don't think of me as evil. Think of me as exploring alternative moralities.

[Guest guest]

Anne Howell at the r Clinic in Dallas believes this is real and knows Dr. . She has ordered me broad band noise generators. It won't cure anything but I think it will help in situations head phones aren't appropriate. And while trying to tune things out and have a conversation with someone. Best of wishes to you.Sent from my iPhone

I submitted my info at http://misophonia-provider.com/Home_Page.html. I'm in the D/FW, TX area. Several university hospitals within about a 4 hour drive of here, and 2-3 locally. So, yes, I'd really appreciate a list of specialists who won't respond with "lolwut?" when I discuss this with them.

So, no, I don't think you should chill. The worst think anyone can do is waste momentum. Regards,Rob

Welcome to our new members! I have been tearfully reading your stories and your "I'm not alone" eureka moments. It was the same for me. And I get emotional all over again. I am 52 and have been getting worse since I was 8 years old.

We have an amazing opportunity here now to continue this momentum and raise our flag high. I know, I know, the Today Show hasn't even aired yet so why am I thinking about the next step already? Because people tend to have short attention spans. I have gotten a huge response from people just from posting the NYT article on FaceBook.

Is it time for bumper stickers? (Nothing mean or undignified: just the website info and maybe graphics.)

Is it time for us to visit otoneurologists? I think Dr J was compiling a list of MDs who are good and those that are not so good. Should we separate by region and (if you have insurance and/or the means to do so) make appointments with these "good" doctors? Or should we all find otoneurologists since a GP won't know what to do?

I live outside San Diego and have access to UCSD which has a research arm. I have seen an there (twice) who appears to be trying his best to get some answers without me coming back all the time ($). Do you live anywhere where there is a medical school? Research facility? Would we tell our oto's the name of the other oto's so they can collaborate?

Or am I just so full of adrenaline that I should shut it down and chill? B^)

-- Don't think of me as evil. Think of me as exploring alternative moralities.

[Guest guest]

I live in san Diego, perhaps you could gave the name and number of your dr and I too can see your doc. Ann Curry said she'd love to do a follow up. The producer just called to say the same thing. So if we can get some moreMedical stuff going to bring back to NBC they seem very interested/open to another story. The more stories the more interest in research, or so I hope. I do believe this will take on a life of it's own but that doesn't mean we should coast. I also think it's time to not fret over the H board. He is over there complaining and we were in the Today show, the train has left the station and he can't stop it.HeidiSent from my iPhone

Welcome to our new members! I have been tearfully reading your stories and your "I'm not alone" eureka moments. It was the same for me. And I get emotional all over again. I am 52 and have been getting worse since I was 8 years old.

We have an amazing opportunity here now to continue this momentum and raise our flag high. I know, I know, the Today Show hasn't even aired yet so why am I thinking about the next step already? Because people tend to have short attention spans. I have gotten a huge response from people just from posting the NYT article on FaceBook.

Is it time for bumper stickers? (Nothing mean or undignified: just the website info and maybe graphics.)

Is it time for us to visit otoneurologists? I think Dr J was compiling a list of MDs who are good and those that are not so good. Should we separate by region and (if you have insurance and/or the means to do so) make appointments with these "good" doctors? Or should we all find otoneurologists since a GP won't know what to do?

I live outside San Diego and have access to UCSD which has a research arm. I have seen an otoneurologist there (twice) who appears to be trying his best to get some answers without me coming back all the time ($). Do you live anywhere where there is a medical school? Research facility? Would we tell our oto's the name of the other oto's so they can collaborate?

Or am I just so full of adrenaline that I should shut it down and chill? B^)

[Guest guest]

Hi Rosemarie and all,Thanks! I'll look into that.On the topic of momentum, are there any plans to submit an article to some of the lay magazines that cover this sort of thing, such as Scientific American Mind?

I've actually got an iPhone app called WhiteNoise that I've started using. When I need it, I just let it play through the phone's speakers. It does a lot more than just white noise too.

Regards,Rob

 

Anne Howell at the r Clinic in Dallas believes this is real and knows Dr. . She has ordered me broad band noise generators. It won't cure anything but I think it will help in situations head phones aren't appropriate. And while trying to tune things out and have a conversation with someone. Best of wishes to you.

Sent from my iPhone

 

I submitted my info at http://misophonia-provider.com/Home_Page.html. I'm in the D/FW, TX area. Several university hospitals within about a 4 hour drive of here, and 2-3 locally. So, yes, I'd really appreciate a list of specialists who won't respond with " lolwut? " when I discuss this with them.

 So, no, I don't think you should chill. The worst think anyone can do is waste momentum. Regards,Rob  

 

Welcome to our new members! I have been tearfully reading your stories and your " I'm not alone " eureka moments. It was the same for me. And I get emotional all over again. I am 52 and have been getting worse since I was 8 years old.

We have an amazing opportunity here now to continue this momentum and raise our flag high. I know, I know, the Today Show hasn't even aired yet so why am I thinking about the next step already? Because people tend to have short attention spans. I have gotten a huge response from people just from posting the NYT article on FaceBook.

Is it time for bumper stickers? (Nothing mean or undignified: just the website info and maybe graphics.)

Is it time for us to visit otoneurologists? I think Dr J was compiling a list of MDs who are good and those that are not so good. Should we separate by region and (if you have insurance and/or the means to do so) make appointments with these " good " doctors? Or should we all find otoneurologists since a GP won't know what to do?

I live outside San Diego and have access to UCSD which has a research arm. I have seen an there (twice) who appears to be trying his best to get some answers without me coming back all the time ($). Do you live anywhere where there is a medical school? Research facility? Would we tell our oto's the name of the other oto's so they can collaborate?

Or am I just so full of adrenaline that I should shut it down and chill? B^)

-- Don't think of me as evil. Think of me as exploring alternative moralities.

-- Don't think of me as evil. Think of me as exploring alternative moralities.

[Guest guest]

Hi Rob,

I had submitted my information to get a list of treatment providers in my area

(twice, actually) but never got anything. I never got any confirmation that they

received my request, either. I'm writing to ask if you ever did hear back from

them, and how if so, how long it took?

Thanks!

> >

> >> **

> >>

> >>

> >> Welcome to our new members! I have been tearfully reading your stories and

> >> your " I'm not alone " eureka moments. It was the same for me. And I get

> >> emotional all over again. I am 52 and have been getting worse since I was 8

> >> years old.

> >>

> >> We have an amazing opportunity here now to continue this momentum and

> >> raise our flag high. I know, I know, the Today Show hasn't even aired yet

so

> >> why am I thinking about the next step already? Because people tend to have

> >> short attention spans. I have gotten a huge response from people just from

> >> posting the NYT article on FaceBook.

> >> Is it time for bumper stickers? (Nothing mean or undignified: just the

> >> website info and maybe graphics.)

> >> Is it time for us to visit otoneurologists? I think Dr J was compiling a

> >> list of MDs who are good and those that are not so good. Should we separate

> >> by region and (if you have insurance and/or the means to do so) make

> >> appointments with these " good " doctors? Or should we all find

> >> otoneurologists since a GP won't know what to do?

> >>

> >> I live outside San Diego and have access to UCSD which has a research arm.

> >> I have seen an there (twice) who appears to be trying his best to get some

> >> answers without me coming back all the time ($). Do you live anywhere where

> >> there is a medical school? Research facility? Would we tell our oto's the

> >> name of the other oto's so they can collaborate?

> >>

> >> Or am I just so full of adrenaline that I should shut it down and chill?

> >> B^)

> >>

> >>

> >

> >

> > --

> > Don't think of me as evil. Think of me as exploring alternative moralities.

> >

> >

> >

>

>

>

> --

> Don't think of me as evil. Think of me as exploring alternative moralities.

>

[Guest guest]

Thank you so much for the awareness you already helped bring. Please do NOT stop

now! We've suffered in silence enough. If ever there was a time to take it all

the way, I think now would be it. Already, many of us feel " better " knowing

we're not crazy or overreacting.

>

> Welcome to our new members! I have been tearfully reading your stories and

your " I'm not alone " eureka moments. It was the same for me. And I get

emotional all over again. I am 52 and have been getting worse since I was 8

years old.

>

> We have an amazing opportunity here now to continue this momentum and raise

our flag high. I know, I know, the Today Show hasn't even aired yet so why am I

thinking about the next step already? Because people tend to have short

attention spans. I have gotten a huge response from people just from posting

the NYT article on FaceBook.

> Is it time for bumper stickers? (Nothing mean or undignified: just the

website info and maybe graphics.)

> Is it time for us to visit otoneurologists? I think Dr J was compiling a list

of MDs who are good and those that are not so good. Should we separate by

region and (if you have insurance and/or the means to do so) make appointments

with these " good " doctors? Or should we all find otoneurologists since a GP

won't know what to do?

>

> I live outside San Diego and have access to UCSD which has a research arm. I

have seen an otoneurologist there (twice) who appears to be trying his best to

get some answers without me coming back all the time ($). Do you live anywhere

where there is a medical school? Research facility? Would we tell our oto's the

name of the other oto's so they can collaborate?

>

> Or am I just so full of adrenaline that I should shut it down and chill? B^)

>

[Guest guest]

I'm in the middle of nowhere (rural South Dakota). I do have insurance, but have 15 chronic health conditions (including severe chronic intractable pain) and can't travel to a doctor. I've seen two local doctors (one in town, one an hour away) who both believed I had (what was at that time) 4S... but didn't know how to treat it.

I'm willing to do what I can to help.. but at this point, don't see anything I can really do. But if anyone can think of a way for me to help, I'd be glad to do it.

---------------------------------------------------------

♥

" Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before. " -Holley Gerth ♥

http://www.caringbridge.org/visit/sarahmae

 

Welcome to our new members! I have been tearfully reading your stories and your " I'm not alone " eureka moments. It was the same for me. And I get emotional all over again. I am 52 and have been getting worse since I was 8 years old.

We have an amazing opportunity here now to continue this momentum and raise our flag high. I know, I know, the Today Show hasn't even aired yet so why am I thinking about the next step already? Because people tend to have short attention spans. I have gotten a huge response from people just from posting the NYT article on FaceBook.

Is it time for bumper stickers? (Nothing mean or undignified: just the website info and maybe graphics.)

Is it time for us to visit otoneurologists? I think Dr J was compiling a list of MDs who are good and those that are not so good. Should we separate by region and (if you have insurance and/or the means to do so) make appointments with these " good " doctors? Or should we all find otoneurologists since a GP won't know what to do?

I live outside San Diego and have access to UCSD which has a research arm. I have seen an otoneurologist there (twice) who appears to be trying his best to get some answers without me coming back all the time ($). Do you live anywhere where there is a medical school? Research facility? Would we tell our oto's the name of the other oto's so they can collaborate?

Or am I just so full of adrenaline that I should shut it down and chill? B^)

[Guest guest]

Hi ,I just did it yesterday, so nothing yet. From the behavior of the form, I kind of suspect that their form submission is broken.

 

Hi Rob,

I had submitted my information to get a list of treatment providers in my area (twice, actually) but never got anything. I never got any confirmation that they received my request, either. I'm writing to ask if you ever did hear back from them, and how if so, how long it took?

Thanks!

> >

> >> **

> >>

> >>

> >> Welcome to our new members! I have been tearfully reading your stories and

> >> your " I'm not alone " eureka moments. It was the same for me. And I get

> >> emotional all over again. I am 52 and have been getting worse since I was 8

> >> years old.

> >>

> >> We have an amazing opportunity here now to continue this momentum and

> >> raise our flag high. I know, I know, the Today Show hasn't even aired yet so

> >> why am I thinking about the next step already? Because people tend to have

> >> short attention spans. I have gotten a huge response from people just from

> >> posting the NYT article on FaceBook.

> >> Is it time for bumper stickers? (Nothing mean or undignified: just the

> >> website info and maybe graphics.)

> >> Is it time for us to visit otoneurologists? I think Dr J was compiling a

> >> list of MDs who are good and those that are not so good. Should we separate

> >> by region and (if you have insurance and/or the means to do so) make

> >> appointments with these " good " doctors? Or should we all find

> >> otoneurologists since a GP won't know what to do?

> >>

> >> I live outside San Diego and have access to UCSD which has a research arm.

> >> I have seen an there (twice) who appears to be trying his best to get some

> >> answers without me coming back all the time ($). Do you live anywhere where

> >> there is a medical school? Research facility? Would we tell our oto's the

> >> name of the other oto's so they can collaborate?

> >>

> >> Or am I just so full of adrenaline that I should shut it down and chill?

> >> B^)

> >>

> >>

> >

> >

> > --

> > Don't think of me as evil. Think of me as exploring alternative moralities.

> >

> >

> >

>

>

>

> --

> Don't think of me as evil. Think of me as exploring alternative moralities.

>

-- Don't think of me as evil. Think of me as exploring alternative moralities.

[Guest guest]

A follow up would be FANtastic! I sent doc a link to the NYT article yesterday.

And sent him a link to the Today Show today and asked him if it's OK to

" publish " his contact info. Also asked him if he can do research if we get

enough people. Will let you know . . . if he says " no " I will send you his info

off line anyway B^)

>

> > Welcome to our new members! I have been tearfully reading your stories and

your " I'm not alone " eureka moments. It was the same for me. And I get emotional

all over again. I am 52 and have been getting worse since I was 8 years old.

> >

> > We have an amazing opportunity here now to continue this momentum and raise

our flag high. I know, I know, the Today Show hasn't even aired yet so why am I

thinking about the next step already? Because people tend to have short

attention spans. I have gotten a huge response from people just from posting the

NYT article on FaceBook.

> > Is it time for bumper stickers? (Nothing mean or undignified: just the

website info and maybe graphics.)

> > Is it time for us to visit otoneurologists? I think Dr J was compiling a

list of MDs who are good and those that are not so good. Should we separate by

region and (if you have insurance and/or the means to do so) make appointments

with these " good " doctors? Or should we all find otoneurologists since a GP

won't know what to do?

> >

> > I live outside San Diego and have access to UCSD which has a research arm. I

have seen an otoneurologist there (twice) who appears to be trying his best to

get some answers without me coming back all the time ($). Do you live anywhere

where there is a medical school? Research facility? Would we tell our oto's the

name of the other oto's so they can collaborate?

> >

> > Or am I just so full of adrenaline that I should shut it down and chill? B^)

> >

> >

>

[Guest guest]

I live in smaller Canadian city and if I could find a medical professional from

any country that would be willing to work with me and others here. I would

honestly spend all of my earnings on this collaboration. I know some people

were skeptical about Dr. Amen but if he would look at my brain personally and

maybe a few others, I would book a flight this instant. If anyone has any ideas

at all, I am completely open to exploring them.

Great job on the Today Show ladies. On Sunday I was close to packing it in, but

you have given me that glimmer of hope that help maybe forthcoming.

Also, it was really tough to read the few negative comments on the New York

Times comment board. It is because of these negative reactions that I am so

afraid to tell just anyone about 4S/Misophonia. I am a school teacher and

everyday I hear adults and children judge the students that may need adaptations

for mental or physical reasons. Because of this " curse " I am extremely

accomodating to others struggling with various issues, and for that is a

blessing.

>

> Welcome to our new members! I have been tearfully reading your stories and

your " I'm not alone " eureka moments. It was the same for me. And I get

emotional all over again. I am 52 and have been getting worse since I was 8

years old.

>

> We have an amazing opportunity here now to continue this momentum and raise

our flag high. I know, I know, the Today Show hasn't even aired yet so why am I

thinking about the next step already? Because people tend to have short

attention spans. I have gotten a huge response from people just from posting

the NYT article on FaceBook.

> Is it time for bumper stickers? (Nothing mean or undignified: just the

website info and maybe graphics.)

> Is it time for us to visit otoneurologists? I think Dr J was compiling a list

of MDs who are good and those that are not so good. Should we separate by

region and (if you have insurance and/or the means to do so) make appointments

with these " good " doctors? Or should we all find otoneurologists since a GP

won't know what to do?

>

> I live outside San Diego and have access to UCSD which has a research arm. I

have seen an otoneurologist there (twice) who appears to be trying his best to

get some answers without me coming back all the time ($). Do you live anywhere

where there is a medical school? Research facility? Would we tell our oto's the

name of the other oto's so they can collaborate?

>

> Or am I just so full of adrenaline that I should shut it down and chill? B^)

>

[Guest guest]

You did great Adah!! Also Heidi! I could never go on live like Heidi did—I would probably freeze and not say anything coherentJ. You both said everything that needed to be said (in such a short time). It was a dream come true! Thank you to the both of you, and also to Dr. J who has been so caring all these years. Adah is right that we need to keep the momentum going. Hopefully researchers will take interest and start the studies!! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of adah_123Sent: Wednesday, September 07, 2011 11:33 PMTo: Soundsensitivity Subject: Momentum Welcome to our new members! I have been tearfully reading your stories and your " I'm not alone " eureka moments. It was the same for me. And I get emotional all over again. I am 52 and have been getting worse since I was 8 years old.We have an amazing opportunity here now to continue this momentum and raise our flag high. I know, I know, the Today Show hasn't even aired yet so why am I thinking about the next step already? Because people tend to have short attention spans. I have gotten a huge response from people just from posting the NYT article on FaceBook. Is it time for bumper stickers? (Nothing mean or undignified: just the website info and maybe graphics.) Is it time for us to visit otoneurologists? I think Dr J was compiling a list of MDs who are good and those that are not so good. Should we separate by region and (if you have insurance and/or the means to do so) make appointments with these " good " doctors? Or should we all find otoneurologists since a GP won't know what to do?I live outside San Diego and have access to UCSD which has a research arm. I have seen an otoneurologist there (twice) who appears to be trying his best to get some answers without me coming back all the time ($). Do you live anywhere where there is a medical school? Research facility? Would we tell our oto's the name of the other oto's so they can collaborate?Or am I just so full of adrenaline that I should shut it down and chill? B^)

[Guest guest]

I agree! I was never so excited to get up so early in my life to watch the

Today Show! You guys did awesome! It was like a dream watching our stories

literally come to life, and so fun to be able to put a face with a name. This

was a HUGE step and I hope and pray it will lead to even more. Thank you all!

>

> You did great Adah!! Also Heidi! I could never go on live like Heidi did-I

> would probably freeze and not say anything coherentJ. You both said

> everything that needed to be said (in such a short time). It was a dream

> come true! Thank you to the both of you, and also to Dr. J who has been so

> caring all these years.

>

>

>

> Adah is right that we need to keep the momentum going. Hopefully

> researchers will take interest and start the studies!!

>

>

>

>

>

>

>

> From: Soundsensitivity

> [mailto:Soundsensitivity ] On Behalf Of adah_123

> Sent: Wednesday, September 07, 2011 11:33 PM

> To: Soundsensitivity

> Subject: Momentum

>

>

>

>

>

> Welcome to our new members! I have been tearfully reading your stories and

> your " I'm not alone " eureka moments. It was the same for me. And I get

> emotional all over again. I am 52 and have been getting worse since I was 8

> years old.

>

> We have an amazing opportunity here now to continue this momentum and raise

> our flag high. I know, I know, the Today Show hasn't even aired yet so why

> am I thinking about the next step already? Because people tend to have short

> attention spans. I have gotten a huge response from people just from posting

> the NYT article on FaceBook.

> Is it time for bumper stickers? (Nothing mean or undignified: just the

> website info and maybe graphics.)

> Is it time for us to visit otoneurologists? I think Dr J was compiling a

> list of MDs who are good and those that are not so good. Should we separate

> by region and (if you have insurance and/or the means to do so) make

> appointments with these " good " doctors? Or should we all find

> otoneurologists since a GP won't know what to do?

>

> I live outside San Diego and have access to UCSD which has a research arm. I

> have seen an otoneurologist there (twice) who appears to be trying his best

> to get some answers without me coming back all the time ($). Do you live

> anywhere where there is a medical school? Research facility? Would we tell

> our oto's the name of the other oto's so they can collaborate?

>

> Or am I just so full of adrenaline that I should shut it down and chill? B^)

>

[Guest guest]

We had contacted The House Ear Research Institute a couple of years ago and one of the doctors was interested in doing research, but he needed funding. Now that we have more exposure, maybe he would be able to get the funding. I’ll have to look back through my emails and find his name. I’ll shoot him an email with the NYT article and Today show clip. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of adah_123Sent: Thursday, September 08, 2011 3:51 PMTo: Soundsensitivity Subject: Re: Momentum A follow up would be FANtastic! I sent doc a link to the NYT article yesterday. And sent him a link to the Today Show today and asked him if it's OK to " publish " his contact info. Also asked him if he can do research if we get enough people. Will let you know . . . if he says " no " I will send you his info off line anyway B^)> > > Welcome to our new members! I have been tearfully reading your stories and your " I'm not alone " eureka moments. It was the same for me. And I get emotional all over again. I am 52 and have been getting worse since I was 8 years old.> > > > We have an amazing opportunity here now to continue this momentum and raise our flag high. I know, I know, the Today Show hasn't even aired yet so why am I thinking about the next step already? Because people tend to have short attention spans. I have gotten a huge response from people just from posting the NYT article on FaceBook. > > Is it time for bumper stickers? (Nothing mean or undignified: just the website info and maybe graphics.) > > Is it time for us to visit otoneurologists? I think Dr J was compiling a list of MDs who are good and those that are not so good. Should we separate by region and (if you have insurance and/or the means to do so) make appointments with these " good " doctors? Or should we all find otoneurologists since a GP won't know what to do?> > > > I live outside San Diego and have access to UCSD which has a research arm. I have seen an otoneurologist there (twice) who appears to be trying his best to get some answers without me coming back all the time ($). Do you live anywhere where there is a medical school? Research facility? Would we tell our oto's the name of the other oto's so they can collaborate?> > > > Or am I just so full of adrenaline that I should shut it down and chill? B^) > > > >>

[Guest guest]

has anyone figured out if there is a place to comment for the show segment at the today show website? I couldn't find it.To: Soundsensitivity Sent: Thursday, September 8, 2011 8:45 PMSubject: RE: Re: Momentum

We had contacted The House Ear Research Institute a couple of years ago and one of the doctors was interested in doing research, but he needed funding. Now that we have more exposure, maybe he would be able to get the funding. I’ll have to look back through my emails and find his name. I’ll shoot him an email with the NYT article and Today show clip. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of adah_123Sent: Thursday, September 08, 2011 3:51

PMTo: Soundsensitivity Subject: Re: Momentum A follow up would be FANtastic! I sent doc a link to the NYT article yesterday. And sent him a link to the Today Show today and asked him if it's OK to "publish" his contact info. Also asked him if he can do research if we get enough people. Will let you know . . . if he says "no" I will send you his info off line anyway B^)> > > Welcome to our new members! I

have been tearfully reading your stories and your "I'm not alone" eureka moments. It was the same for me. And I get emotional all over again. I am 52 and have been getting worse since I was 8 years old.> > > > We have an amazing opportunity here now to continue this momentum and raise our flag high. I know, I know, the Today Show hasn't even aired yet so why am I thinking about the next step already? Because people tend to have short attention spans. I have gotten a huge response from people just from posting the NYT article on FaceBook. > > Is it time for bumper stickers? (Nothing mean or undignified: just the website info and maybe graphics.) > > Is it time for us to visit otoneurologists? I think Dr J was compiling a list of MDs who are good and those that are not so good. Should we separate by region and (if you have insurance and/or the means to do so) make appointments with these "good" doctors? Or should we

all find otoneurologists since a GP won't know what to do?> > > > I live outside San Diego and have access to UCSD which has a research arm. I have seen an otoneurologist there (twice) who appears to be trying his best to get some answers without me coming back all the time ($). Do you live anywhere where there is a medical school? Research facility? Would we tell our oto's the name of the other oto's so they can collaborate?> > > > Or am I just so full of adrenaline that I should shut it down and chill? B^) > > > >>

[Guest guest]

I don't know if you can post comments on the msnbc site, but you can comment on

the youtube video clip.

> >

> > > Welcome to our new members! I have been tearfully reading your stories and

your " I'm not alone " eureka moments. It was the same for me. And I get emotional

all over again. I am 52 and have been getting worse since I was 8 years old.

> > >

> > > We have an amazing opportunity here now to continue this momentum and

raise our flag high. I know, I know, the Today Show hasn't even aired yet so why

am I thinking about the next step already? Because people tend to have short

attention spans. I have gotten a huge response from people just from posting the

NYT article on FaceBook.

> > > Is it time for bumper stickers? (Nothing mean or undignified: just the

website info and maybe graphics.)

> > > Is it time for us to visit otoneurologists? I think Dr J was compiling a

list of MDs who are good and those that are not so good. Should we separate by

region and (if you have insurance and/or the means to do so) make appointments

with these " good " doctors? Or should we all find otoneurologists since a GP

won't know what to do?

> > >

> > > I live outside San Diego and have access to UCSD which has a research arm.

I have seen an otoneurologist there (twice) who appears to be trying his best to

get some answers without me coming back all the time ($). Do you live anywhere

where there is a medical school? Research facility? Would we tell our oto's the

name of the other oto's so they can collaborate?

> > >

> > > Or am I just so full of adrenaline that I should shut it down and chill?

B^)

> > >

> > >

> >

>

[Guest guest]

The video and transcript can be found at this link for the Today Show and at the bottom there is a place to 'Discuss' and leave your comment :)TODAY SHOW > > > > > Welcome to our new members! I have been tearfully reading your stories and your "I'm not alone" eureka moments. It was the same for me. And I get emotional all over again. I am 52 and have been getting worse since I was 8 years old.> > > > > > We have an amazing opportunity here now to continue this momentum and raise our flag high. I know, I know, the Today Show hasn't even aired yet so why am I thinking about the next step already? Because people tend to have short attention spans. I have gotten a huge response from people just from posting the NYT article on FaceBook. > > > Is it time for bumper stickers? (Nothing mean or undignified: just the website info and maybe graphics.) > > > Is it time for us to visit otoneurologists? I think Dr J was compiling a list of MDs who are good and those that are not so good. Should we separate by region and (if you have insurance and/or the means to do so) make appointments with these "good" doctors? Or should we all find otoneurologists since a GP won't know what to do?> > > > > > I live outside San Diego and have access to UCSD which has a research arm. I have seen an otoneurologist there (twice) who appears to be trying his best to get some answers without me coming back all the time ($). Do you live anywhere where there is a medical school? Research facility? Would we tell our oto's the name of the other oto's so they can collaborate?> > > > > > Or am I just so full of adrenaline that I should shut it down and chill? B^) > > > > > >> >>