Re: Letters

[Guest guest]

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

[Guest guest]

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

[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]

Thank you Lynda,

I think it is very exciting and hopeful that you were able to get even get a response from one of Dr. Ramachandran grad students, whether something comes of it or not. Also fantastic news about interest at the Cohen Kadosh Lab at Oxford.

I think the method of approach you have been taking to contacting researchers is an excellent plan of action, I am looking forward to reading your templates. To: Soundsensitivity Sent: Monday, January 30, 2012 1:43 PM Subject: Re: LettersI 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]

I need a letter that better explain and educate people in general please! work on it and let everyone understand that it is a debilitating condition and the sufferer has no control of it. This is a torture to live with it. For the past 17+ years I woke up every day thinking of killing myself, hating to be alive.I carry a card given to me by the Manhattan Psychiatric Center social worker that has helped, but it doesn't explain much and most people don't understand when they read it...They laugh about "the crazy card" for the past 20 years it has help me at least make some people stop, when they read Psychiatric center they get scary.I have problems from noises, smells, visuals .I am living a nightmare at the SRO where I live, the staff enjoy when they get me trapped in the elevator or a corner to torment me by shoving food in their mouths and chewing loudly, smirking and staring at me to see a reaction in a daily basis. I have none to complain or a place to make a complain. I am not allowed to participate at social events in the building where I have lived for the past 17+ years because of families of staff my be there enjoying their gum chewing at tenants events. They told me to "get over it", :"you are not going to get your way with us to get special privileges", Those are the people that are supposed to get paid to help people with disabilities... I can't understand where is the professional, compassion, humanity... etc. Why is that nobody cares about the misophia sufferers to understand the dangerous and crippling dysfunction invisible to the so called

normal people. I am trapped in this Single Room Occupancy with NO help or assistance from any kind."DEAR SIR / MADAMDUE TO A CHEWING GUM PHOBIATHAT I SUFFER FROM, I WOULD BEVERY APPRECIATIVE IF YOU WOULD NOT CHEW GUM IN MY PRESENCETHANK YOU." From: lindakessler52

To: Soundsensitivity Sent: Monday, January 30, 2012 9:33 PM Subject: Re: Letters

,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]

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.