Re: Letters

[Guest guest]

hi everyone , does anybody live in the bay area????? iam in santa rosa ??? thanks

[Guest guest]

Chico, but I travel.

hi everyone , does anybody live in the bay area????? iam in santa rosa ??? thanks

[Guest guest]

I checked out the link and think the ideas presented there are excellent. If you have not gone and read the more detailed information on the ideas presented, I highly recommend you do so. This is a proactive suggestion and beats sitting around doing nothing and suffering. I am particularly impressed with "Lynda's" reply to the original posting there. She has already written letters to three research labs and has gotten a response from the Ramachandran Lab in California with interviews set-up. Fabulous progress!! Vilayanur Ramachandran is a world renowned neuroscientist who tackles difficult brain processing problems. The fact that one of his grad students is starting to investigate misophonia is cause for great hope! Thanks for posting this ...I am currently waiting to be approved for membership at www.misophonia.info and will then also post the above there.>> I think we should all group together and write a few letters for the> community.> > http://www.misophonia.info/Forum/viewtopic.php?f=15 & t=463> > Please check out the above post and let me know your thoughts either here> or on the website.> > Looking forward to hearing back from you.> > >

[Guest guest]

"Vilayanur Ramachandran is

a world renowned neuroscientist who tackles difficult brain processing

problems. The fact that one of his grad students is starting to

investigate misophonia is cause for great hope"WOW!!! To: Soundsensitivity Sent: Sunday, January 29, 2012 7:06 PM Subject: Re: Letters

I checked out the link and think the ideas presented there are excellent. If you have not gone and read the more detailed information on the ideas presented, I highly recommend you do so. This is a proactive suggestion and beats sitting around doing nothing and suffering. I am particularly impressed with "Lynda's" reply to the original posting there. She has already written letters to three research labs and has gotten a response from the Ramachandran Lab in California with interviews set-up. Fabulous progress!! Vilayanur Ramachandran is a world renowned neuroscientist who tackles difficult brain processing problems. The fact that one

of his grad students is starting to investigate misophonia is cause for great hope! Thanks for posting this ...I am currently waiting to be approved for membership at www.misophonia.info and will then also post the above there.>> I think we should all group together and write a few letters for the> community.> > http://www.misophonia.info/Forum/viewtopic.php?f=15 & t=463> > Please check out the above post and let me know your thoughts either here> or on the website.> > Looking forward to hearing back from you.> >

>

[Guest guest]

whew whoooo hope it gets somewhere!!!!!!!!!!!!!

Subject: Re: Re: LettersTo: "Soundsensitivity " <Soundsensitivity >Date: Sunday, January 29, 2012, 5:31 PM

"Vilayanur Ramachandran is a world renowned neuroscientist who tackles difficult brain processing problems. The fact that one of his grad students is starting to investigate misophonia is cause for great hope"

WOW!!!

To: Soundsensitivity Sent: Sunday, January 29, 2012 7:06 PMSubject: Re: Letters

I checked out the link and think the ideas presented there are excellent. If you have not gone and read the more detailed information on the ideas presented, I highly recommend you do so. This is a proactive suggestion and beats sitting around doing nothing and suffering. I am particularly impressed with "Lynda's" reply to the original posting there. She has already written letters to three research labs and has gotten a response from the Ramachandran Lab in California with interviews set-up. Fabulous progress!! Vilayanur Ramachandran is a world renowned neuroscientist who tackles difficult brain processing problems. The fact that one of

his grad students is starting to investigate misophonia is cause for great hope!

Thanks for posting this ...I am currently waiting to be approved for membership at www.misophonia.info and will then also post the above there.

>> I think we should all group together and write a few letters for the> community.> > http://www.misophonia.info/Forum/viewtopic.php?f=15 & t=463> > Please check out the above post and let me know your thoughts either here> or on the website.> > Looking forward to hearing back from you.> > >

[Guest guest]

I just wanted to address the comment below made by Kessler. It is not a

given that the Ramachandran lab will investigate misophonia. My only contact has

been with the grad student. He wanted to know if there were any of us in the San

Diego area that he could interview. I found six volunteers. Hopefully when he

has finished the interviews he will want to carry out an investigation. Also,

Dr. Ramachandran is away until February. I'm also hoping he will support an

investigation when he returns. But, if this all falls through, I know there is

someone out there somewhere in the scientific community that will find

misophonia very interesting and will want to research it. We just have to find

him.

" Vilayanur Ramachandran is a world renowned neuroscientist who tackles

difficult brain processing problems. The fact that one of his grad students is

starting to investigate misophonia is cause for great hope! "

[Guest guest]

Lynda,Thank you so much for responding to my posting and clarifying the situation with the Ramachandran lab. I have a tendency to be over-optimistic and often get ahead of the situation. I was just so excited when I saw that you had at least gotten a foot in the research door, and I'm well aware of Ramachandran's reputation and niche research. In addition to the fact that I have just joined these groups on misophonia and have seen so much suffering and misunderstanding of this topic, it was wonderful to see 's proactive suggestions and your post!My son is currently working in a brain research lab at the University of Michigan and I would very much like to have him distribute a letter to his fellow workers explaining the need for investigation into misophonia. If you could forward a template of the letter that you have used, he and I could tailor it to fit his lab's interests and expertise.My interest in this topic is that a different son's girlfriend has rather severe misophonia, and I have some basic understanding of brain processing as I have taught a variety of classes at the university level on the brain and behavior.I also have a background in writing and would be more than happy to help polish up a form letter to be distributed to friends, family, doctors, etc as suggested by .Thanks again for your posting and I look forward to helping in any way I am able. Kessler> > "Vilayanur Ramachandran is a world renowned neuroscientist who tackles difficult brain processing problems. The fact that one of his grad students is starting to investigate misophonia is cause for great hope!">

[Guest guest]

This is excellent. Thank you for your efforts. I would like to get a large group of people involved so if I have not already please do make time to respond to this post or the post on the public website.

R

 

Lynda,Thank you so much for responding to my posting and clarifying the situation with the Ramachandran lab.  I have a tendency to be over-optimistic and often get ahead of the situation.  I was just so excited when I saw that you had at least gotten a foot in the research door, and I'm well aware of Ramachandran's reputation and niche research.  In addition to the fact that I have just joined these groups on misophonia and have seen so much suffering and misunderstanding of this topic, it was wonderful to see 's proactive suggestions and your post!

My son is currently working in a brain research lab at the University of Michigan and I would very much like to have him distribute a letter to his fellow workers explaining the need for investigation into misophonia.  If you could forward a template of the letter that you have used, he and I could tailor it to fit his lab's interests and expertise.

My interest in this topic is that a different son's girlfriend has rather severe misophonia, and I have some basic understanding of brain processing as I have taught a variety of classes at the university level on the brain and behavior.

I also have a background in writing and would be more than happy to help polish up a form letter to be distributed to friends, family, doctors, etc as suggested by .

Thanks again for your posting and I look forward to helping in any way I am able. Kessler

> > " Vilayanur Ramachandran is a world renowned neuroscientist who tackles difficult brain processing problems. The fact that one of his grad students is starting to investigate misophonia is cause for great hope! "

>

[Guest guest]

,I have gone to the misophonia.info site but I'm not quite sure how to correctly add to the thread about letters there, so I am hoping that posting here will get through to you and others with an interest in getting the letter-writing underway. Perhaps you could post this letter in the appropriate spot at misohonia.info.Because I do not personally have misophonia, it would be helpful for me to have a list of the most common symptoms, triggers, reactions, etc in order to put together an informative letter. I agree with you that there should be a basic form letter to give to doctors that people with misophonia can use to educate their physicians about this syndrome along with a basic form letter to distribute to friends and family explaining the general problems experienced with misophonia. My knowledge of this syndrome comes from discussions with my son's girlfriend who has described her problems mostly relating to chewing sounds and soft tapping sounds that trigger an instant intense anger often resulting in verbal outbursts which she knows are irrational but she cannot control. This is often followed by frustration and depression. She also experiences anticipatory anxiety when she knows she will be in social situations where she may experience her triggers. Her symptoms started in childhood and the reaction of her family is that she should just "get over it" and at least stop over-reacting. It appears likely from the many people who share these same basic problems that misophonia is some type of brain-processing problem where soft repetitive sounds hijack one's emotional neuro-circuitry and create something similar to the "fight or flight" reaction. This is my basic knowledge but I'm sure others can add more detail that should be included in the letters. Anyone with any suggestions, please post and I will do my best to put together a couple form letters that can be edited and tweeked. Obviously, individuals can also personalize these form letters to fit their own situations.And if Lynda will post one of the letters that she used to contact research labs, I would find it helpful to use for contacting the University of Michigan's Dept of Psychiatry where my son works in a research capacity.Looking forward to hearing any other suggestions from the many posters at either this yahoo groups site or at the misophonia.info site. Kessler> > >> > > "Vilayanur Ramachandran is a world renowned neuroscientist who tackles> > difficult brain processing problems. The fact that one of his grad students> > is starting to investigate misophonia is cause for great hope!"> > >> > > >>

[Guest guest]

This is great, and the symptoms you have described are VERY accurate for me.

- Anxiety before I go somewhere knowing these sounds will be heard

- Pen clicking, nail clipping, finger tapping, exsessive sniffing are all bothersome, but what REALLY makes me squirm is Gum Chewing, food Smacking, and what I describe basically as "mouth sounds"

- If I SEE someone chewing, especially if they're a very animated chewer, it triggers high anxiety in me even if I can't hear it and I have to look away.

- Hearing these sounds USED to trigger pure rage and anger, but I do not get angry anymore, I instead get Extremely depressed and anxious and usually a fight or flight reaction where I think "I HAVE to get OUT of here!" I feel like a freak of nature. I think that this is because before when I got angry it was because I kept thinking that everyone around me was extremely rude, until I realized it was ME, not them.

- It started in childhood at the dinner table. my family tends to want to talk with mouths full of food. I had a very rough relationship with my mother and sister, but I don't think that is related.

[Guest guest]

Hi all,I am concerned that this topic will get lost in the stream of emails from the yahoo group unless we keep it active. I would really like to see more involvement on this topic so if you have not already please either respond to this email chain or head over to the public website and let us know your thoughts.

http://www.misophonia.info/Forum/viewtopic.php?f=15 & t=463The more feedback we have from everyone the better the letters will be.

Please do respond to this email or head over to the public website. The more we all work together the closer we stand to research and hopefully in time, a cure. So lets get some more thoughts down and act pro-actively  to get closer to that cure!

Rich

 

This is great, and the symptoms you have described are VERY accurate for me.

 

- Anxiety before I go somewhere knowing these sounds will be heard

 - Pen clicking, nail clipping, finger tapping, exsessive sniffing are all bothersome, but what REALLY makes me squirm is Gum Chewing, food Smacking, and what I describe basically as " mouth sounds "

 - If I SEE someone chewing, especially if they're a very animated chewer, it triggers high anxiety in me even if I can't hear it and I have to look away.

 - Hearing these sounds USED to trigger pure rage and anger, but I do not get angry anymore, I instead get Extremely depressed and anxious and usually a fight or flight reaction where I think " I HAVE to get OUT of here! "   I feel like a freak of nature.  I think that this is because before when I got angry it was because I kept thinking that everyone around me was extremely rude, until I realized it was ME, not them.

 - It started in childhood at the dinner table.  my family tends to want to talk with mouths full of food. I had a very rough relationship with my mother and sister, but I don't think that is related.